The State of 21st Century\
Long-Term Services\
and Supports: Financing and\
Systems Reform for\
Americans with Disabilities

![](media/image1.png){width="1.75in" height="1.75in"}

National Council on Disability

December 15, 2005

National Council on Disability

1331 F Street, NW, Suite 850

Washington, DC 20004

### The State of 21st Century Long-Term Services and Supports: Financing and Systems Reform for Americans with Disabilities

This report is also available in alternative formats and on the
award-winning National Council on Disability (NCD) Web site
(www.ncd.gov).

Publication date: December 15, 2005

202-272-2004 Voice

202-272-2074 TTY

202-272-2022 Fax

The views contained in this report do not necessarily represent those of
the Administration as this and all NCD documents are not subject to the
A-19 executive branch review process.

**Letter of Transmittal**

December 15, 2005

The President

The White House

Washington, DC 20500

Dear Mr. President:

The National Council on Disability (NCD) is pleased to present to you
our groundbreaking report, *The State of 21st Century Long-Term Services
and Supports: Financing and Systems Reform for Americans with
Disabilities*.

NCD undertook research for this report because it has grown increasingly
concerned about the (a) lack of a coherent national long-term services
and supports (LTSS) public policy for all people with disabilities; (b)
fragmented nature of service and support delivery systems, with uneven
access and services provisions; and (c) LTSS costs of 22 percent or more
of state budgets, which are fast becoming unsustainable. Additionally,
NCD noted in undertaking research for this report that no single federal
program, federal agency, or congressional committee is charged with the
responsibility for the management, funding, and oversight of LTSS;
however, 23 federal agencies are actively involved in LTSS using the NCD
definition.

As reflected in this report, NCD believes that America needs a coherent
and comprehensive framework for its LTSS policies, programs, and funding
based on five interrelated assumptions. First, that people who are
elderly and people with disabilities both desire and deserve choices
when seeking assistance with daily living that maintains their
self-determination and maximum dignity and independence. Second, the
current financing mechanisms (public and private) will become
unsustainable in the near future without significant reform. The system
must be affordable to all Americans regardless of income levels and must
consider opportunities to leverage public and private support in new
ways without impoverishing beneficiaries. Third, there is an opportunity
with the changing demographic picture of the United States to explore
the possibilities of a universal approach to the design and financing of
supports that is responsive to individuals under the age of 65, as well
as Americans over 65 who may or may not have disabilities, without
sacrificing individual choice and flexibility. Fourth, formal and
informal caregiving must be sustained, including examination of family
needs and workforce recruitment and retention challenges. Fifth, the
approach to quality must examine consumer direction and control of
resources in addition to traditional external quality assurance
mechanisms.

NCD stands ready to work with you, members of your Administration, and
the leadership in Congress in the months and years ahead as you work
toward improving our nation's LTSS system.

Sincerely,

![](media/image2.png){width="1.3479166666666667in"
height="0.4861111111111111in"}

Lex Frieden

Chairperson

#   {#section .unnumbered}

# National Council on Disability Members and Staff

**Members**

Lex Frieden, Chairperson

Patricia Pound, First Vice Chairperson

Glenn Anderson, Ph.D., Second Vice Chairperson

Milton Aponte, J.D.

Robert R. Davila, Ph.D.

Barbara Gillcrist

Graham Hill

Joel I. Kahn, Ph.D.

Young Woo Kang, Ph.D.

Kathleen Martinez

Carol Novak

Anne M. Rader

Marco Rodriguez

David Wenzel

Linda Wetters

**Staff**

Number range CHAPTEREthel D. Briggs, Executive Director

Jeffrey T. Rosen, General Counsel and Director of Policy

Julie Carroll, Senior Attorney Advisor

Joan M. Durocher, Senior Attorney Advisor

Martin Gould, Ed.D., Director of Research and Technology

Geraldine Drake Hawkins, Ph.D., Senior Program Analyst

Allan W. Holland, Chief Financial Officer

Pamela O'Leary, Sign Language Interpreter

Mark S. Quigley, Director of Communications

Mark E. Seifarth, Congressional Liaison

Brenda Bratton, Executive Assistant

Stacey S. Brown, Staff Assistant

Carla Nelson, Secretary

# Acknowledgments

The National Council on Disability wishes to express its deepest
appreciation to Michael Morris and Johnette Hartnett of the National
Disability Institute NCB Development Corporation for developing this
groundbreaking report.

# Table of Contents

Page

Executive Summary 13

Introduction 13

Findings 17

Recommendations 29

Chapter 1 37

The State of 21st Century Long-Term Services and Supports:\
Financing and Systems Reform for Americans with Disabilities

Chapter 2 187

Future Market Demand and Understanding Costs of Long-Term\
Services and Supports: Financing and Systems Reform for\
Americans with Disabilities

Chapter 3 281

External Advisors and External Policymakers:

Recommendations for Action

Chapter 4 339

**Moving Forward: Selected State Strategies for 21st Century\
Long-Term Services and Supports: Financing and Systems Reform**

**for Americans with Disabilities**

Chapter 5 435

Moving Forward: Local and Individual Strategies for 21st Century\
Long-Term Services and Supports: Financing and Systems Reform\
for Americans with Disabilities

Chapter 6 489

Recommendations for Incremental and Clean Slate Reform

References 515

## Chapter 1: The State of 21st Century Long-Term Services and Supports: Financing and Systems Reform for Americans with Disabilities

## Table of Contents

**Page**

**Part I\
Picturing the Problem** 41

**Part II\
Charting the Course** 44

**Part III\
Forecasting the Need** 48

**Part IV\
Dragging Anchor** 55

**Part V\
Introducing the Captain** 62

**Part VI\
Meeting the Crew** 74

**Part VII\
Fueling the Engine** 84

**Part VIII\
Pushing Tugboats** 106

**Part IX\
Harnessing Favorable Winds** 113

**Part X\
Gathering Clouds** 117

**Part XI\
Recharting the Course** 125

**Appendix 1.A** 131

**Appendix 1.B** 132

**Appendix 1.C** 134

**Appendix 1.D** 136

**Appendix 1.E** 137

**Appendix 1.F** 139

**Appendix 1.G** 157

## Chapter 2: Future Market Demands and Understanding Costs of Long-Term Services and Supports: Financing and Systems Reform for Americans with Disabilities

## Table of Contents

**Page**

**Part I**

**Introducing Research Purpose and the Rich Picture Story Line** 191

**Part II**

**Forecasting the Storm** 193

**Part III**

**Tracking the Storm** 197

**Part IV**

**Lowering the Lifeboats** 216

**Part V**

**Approaching the Iceberg** 225

**Part VI**

**Reviewing the Passenger Manifest** 241

**Part VII**

**Moving Toward Reform** 272

## Chapter 3: External Advisors and External Policymakers: Recommendations for Action

## Table of Contents

**Page**

**Part I**

**Introduction** 285

**Part II\
Approaches to Development** 287

**Part III\
Expert Panel Discussion and Recommendations** 321

**Part IV\
Conclusion** 327

**Appendix 3.A** 331

## Chapter 4: Moving Forward: Selected State Strategies for 21st Century Long-Term Services and Supports: Financing and Systems Reform for Americans with Disabilities

## Table of Contents

**Page**

**Part I\
Introduction** 343

**Part II\
Five State Case Studies** 348

**Part III\
Conclusion** 429

**Appendix 4.A** 433

## Chapter 5: Moving Forward: Local and Individual Strategies for 21st Century Long-Term Services and Supports: Financing and Systems Reform for Americans with Disabilities

## Table of Contents

**Page**

**Part I**

**Introduction** 439

**Part II**

**Conclusion** 486

## Chapter 6. Recommendations for Incremental and Clean Slate Reform

## Table of Contents

**Page**

**Part I**

**Introduction to Incremental Reform** 493

**Part II**

**Moving Forward---Improving the Current LTSS Ship** 494

**Part III**

**The New Millennium LTSS Model** 508

**Part IV**

**Ameriwell---The New Millennium LTSS Model** 511

# Executive Summary

## Introduction

Long-term services and supports (LTSS) is not only an issue for older
Americans but also for younger individuals with disabilities, and any
LTSS financing and system reform efforts must consider both populations.

The current LTSS system is funded primarily by state and federal
programs. More specifically, Medicaid is the primary payer of LTSS in
this country. Medicaid paid for 45 percent of the \$137 billion this
country spent on LTSS in FY 2000. Yet, despite the amount of money that
state and federal programs are allocating to LTSS, individuals and their
families still pay out of pocket for nearly one-third of LTSS expenses.

Although the population of people who have disabilities and people who
are elderly has indicated a preference for receiving LTSS in home- and
community-based settings, a federal institutional bias exists.
Presently, about 1.6 million people live in nursing homes, group homes,
and other institutional facilities. At the same time, there are about 2
million to 2.4 million people on waiting lists or in need of some type
of LTSS.

Options for LTSS are emerging. Aging and disability advocates are
working with the health care industry to create a continuum of care,
including such services as assisted living, adult day services, and home
care. Governors have creatively used the Medicaid waiver process to
increase home- and community-based services for people who are elderly
and people with disabilities.

Although financing is the cornerstone of the LTSS issue, other issues
are critical in building an adequate, seamless, and effective LTSS
system to meet the increasing needs of aging baby boomers and the
increasing numbers of individuals with disabilities who have LTSS needs.
These issues include supporting family caregivers, addressing workforce
shortages, improving the quality of LTSS services, and improving access
to transportation and housing.

Recognizing, in particular, that the impending age wave of baby boomers
will significantly increase the demand for LTSS in the coming decades,
the National Council on Disability was interested in researching the
issues of LTSS financing and systems reform. This report addresses those
issues.

The development of long-term services and supports (LTSS) comprehensive
policy will define the future economic independence of Americans with
disabilities. Changing demographic and economic trends, here and abroad,
will demand that the United States retool its programmatic and financial
infrastructure to protect and promote individual dignity and
independence of all Americans with disabilities. The development of
sustainable and affordable LTSS public policy for the 21st
century---funded through a unique combination of individual
contributions, innovative private sector assistance, and public
support---will provide a new security for Americans with disabilities to
work and live independently. Although 20th century advances
revolutionized the concept of health care and longevity for many
Americans, increasing life expectancy by 30 years, they fell short in
providing an affordable LTSS public policy for both the medical and
nonmedical services and supports needed by many working Americans with
disabilities. The United States is a world leader in extending life and
eradicating disease, but it has failed to develop an LTSS public policy
that truly integrates disability as a natural part of the human
experience.

Few Americans think of LTSS for individuals under the age of 65 who are
living and working in the community with significant disabilities. Many
people do not realize that there is no LTSS public policy for
individuals of moderate to middle income, whether over or under the age
of 65. Private insurance is available for long-term care that, on
average, is capped at a specific dollar amount, provides coverage for
about three years, and is geared toward services and supports that cater
to diseases of aging and not the needs of everyday working Americans
with disabilities.

Ninety percent of Americans do not have long-term care insurance, and
many do not have the financial savings to cover the costs of aging. Few
insurance products are available that cover the costs of providing
services and supports targeted for individuals and families challenged
with lifelong disabilities under age 65. A recent actuarial study found
that Americans at age 45 are more likely to become disabled than to die,
and yet we continue to insure against loss of life rather than against
the risk of disability. There are no risk pools or insurance products
designed to supplement the additional costs associated with living and
working with a lifelong disability. There is little research or data
that accurately captures what this means for planning the financial
future of an individual born today with a lifelong disability.

Disability prevalence is rising in the under-age-65 population and,
although it has decreased slightly for seniors, it will begin to rise
sharply as the current senior population of 34 million doubles over the
next 20 years. Inherently, most Americans think of LTSS as long-term
care for seniors in nursing homes with severe chronic disabilities. This
bias is a holdover from the 1960s, when Medicaid and Medicare were first
established, and reflects a system of care that is outdated and no
longer cost-effective. Although the movement today is to provide
services and supports in the home and community through an array of
waivers, more than 50 percent of Medicaid resources for LTSS continue to
support individuals in nursing facilities or intermediate care
facilities for the mentally retarded (ICF/MRs).

In 2001,[^1] the United States spent \$1.24 trillion (or about \$5,500
per person) on personal health care services, with 12 percent (or
\$151.2 billion) spent on LTSS. Although 70 percent of the 53 million
Medicaid beneficiaries are children and mothers, more than half of the
\$276.1 billion spent in 2003 was for populations who are aging (15
percent) and with disabilities (15 percent). The predominant disability
populations receiving Medicaid LTSS are those with mental retardation
and developmental disabilities (MR/DD) and low-income seniors who rely
on both Medicaid and Medicare. Between 9 million and 12 million
Americans need help with activities of daily living (ADLs) and
instrumental activities of daily living (IADLs), and 3.5 million are
under 65 years of age. The literature also reports that 25 million
individuals with chronic severe disabilities under age 65 are probably
in need of some LTSS, but these individuals are often not counted or
found eligible because of income or family assets, or they fall outside
the realm of traditional functional assessments that use ADLs and IADLs
as measurements. There is also confusion about what definition of
disability should be used to assist policymakers in studying LTSS needs.
Finally, LTSS are not portable and are highly dependent on the fiscal
and budgetary priorities and obligations of each state.

In addition, about one-fifth of the U.S. population is uninsured or
underinsured, with more than 18,000 American lives lost each year
because of gaps in insurance coverage, at an economic cost between \$65
billion and \$139 billion annually from premature death, preventable
disability, early retirement, and reduced economic output. Rising
double-digit inflation costs for health care continue to confound state
and federal efforts to reign in overall health and LTSS spending. The
probability of sustaining future promises to current social policy and
its beneficiaries is low if the demographics are correct: Fewer workers
will mean lower payroll contributions and less money available to fund
past and future commitments. The research suggests that the problem is
beyond incremental reform and requires immediate attention.

A "rich picture" methodology was used to introduce the problem this
report addresses. The picture captures the current health care and LTSS
system. The field of management often uses a rich picture systems
methodology, that is, "an innovative tool that encapsulates knowledge
relevant to strategic reform." For the disability field, the use of the
rich picture allows people with intellectual impairments and other
cognitive challenges to grasp the essence of the research through a
visual representation and dialogue. The picture and narrative relied on
the review of primary and secondary research documents; one-on-one
open-ended interviews with key stakeholders in the disability, long-term
care, and health care fields; review of congressional records and
attendance at a number of hearings; and the convening of a national
expert advisory panel on LTSS.

The setting for the rich picture is the ocean, with the current LTSS and
health care ship heading toward an iceberg that represents the barriers
and challenges to systems reform. The cast for this rich picture
provided the substantive descriptions and main body of research and
analysis about the barriers and challenges of navigating through the
current system of LTSS. The presentation of the research in this format
was purposeful so that the reader and the researcher could begin the
voyage together with a snapshot of the problem. It was intended that a
new picture would emerge as the researchers integrated the findings from
the other chapters of the research. The final picture is a new ship,
"AmeriWell," that is designed to provide LTSS for all Americans
regardless of income or category of disability through innovative
funding from individuals and families, the private sector; and the
Federal Government. AmeriWell will delink aging and disability
populations from both Medicaid and Medicare that require LTSS to form a
new LTSS program that provides services and supports to middle-and
low-income Americans with disabilities.

The purpose of this research is to produce new knowledge and an
understanding of current experience with and the future need for
affordable LTSS for people with disabilities. The following findings
provide a broad overview of the four areas researched for this report.
Chapter recommendations are provided here in brief, but a detailed
summary is available in chapter 6. All footnotes and references can be
found in the original text, except where otherwise noted.

## Findings

1\. Little Political or Public Understanding of Current and Future LTSS
Needs (Chapter 1)

A. There is little public or political interest in putting LTSS onto the
national agenda, although state Medicaid spending represents 22 percent
of overall state budgets and is fast becoming unsustainable.

B. Fifty-nine percent of Americans have given little or no thought to
the issue of LTSS and the costs associated with aging or disability.

C. Most Americans do not understand the current system of LTSS, how it
is funded, or who is eligible for services. Many people do not
understand that Medicaid is the primary provider of LTSS for all
populations---both young and old---and that eligibility is income
sensitive.

D. The development of affordable LTSS is the missing link in making work
a reality for many Americans with disabilities.

2\. Fragmentation of Federal System of LTSS (Chapter 1)

A. There is no single federal program or federal agency charged with the
responsibility for management, funding, and oversight of LTSS at home
and in the community. More than 20 federal agencies and almost 200
programs provide a wide range of assistance and services to people with
disabilities.[^2]

B. There is no single entry point at a community level for individuals
with disabilities and seniors to learn about and access service and
support options.

C. There are multiple federal programs with varying policy objectives
that embrace the values of consumer choice and independence in daily
living, but there is no comprehensive, integrated delivery system that
provides portability across states.

3\. Policymakers Continue to Avoid the Hard Questions (Chapter 1)

A. Twenty years of research and exercises in forecasting future visions
for LTSS have failed to answer the following questions: What services
should be guaranteed to individuals unable to provide for themselves?
What protections from catastrophic loss, financial or otherwise, should
be afforded, and, most important, who will pay? How is the current LTSS
policy working, and does it meet the needs of today's population with
disabilities?

4\. Favorable Court Decisions Post-ADA for Future LTSS (Chapter 1)

A. Positive forces for change began with the passage of the Americans
with Disabilities Act (ADA) in 1990; they were followed by the Supreme
Court decision in *Olmstead* in 1999 and the subsequent Administration
actions in 2000, and continued to the present. They provide a platform
to support policy and program changes for a long-term support system
that embraces consumer choice to live in the least-restrictive
environment at home and benefit from community participation.

5\. Future of LTSS Formal and Informal Workforce Unclear (Chapter 1)

A. Population demographic changes because of aging, reduced fertility
rates, increased women in the workforce, and changing family makeup
predict there will be fewer unpaid family workers and an increased
demand for paid workers.

B. The role of government in addressing the challenges of the current
formal and informal workforce is unclear.

C. The majority of LTSS workers providing paid care are often without
health insurance and other employee benefits and experience frequent job
turnover.

6\. LTSS Policy Not Just for Seniors (Chapter 2)

A. Most data for LTSS favors individuals age 65 and older with diseases
of aging. Policymakers and researchers need accurate data to calculate
current and future LTSS utilization and costs to develop a clear
consensus as to who is to be covered by an LTSS system and how
eligibility will be calculated.

7\. Disability Definitions Need Clarification (Chapter 2)

A. Disability definitions range from a medical diagnostic approach to a
functional assessment approach that uses ADLs and IADLs. There is no
aggregated data on the overall costs and utilization rates using the
NCD/AARP definition for LTSS that includes transportation, nutrition,
and housing.

B. There are 38 million people under age 65 reporting some level of
disability and, of this Group, 25 million have a specific chronic
disability; however, many of these individuals are not eligible for
LTSS.

C. Using the functional definition of disability based on ADLs and
IADLs, the estimated population in need of LTSS under age 65 ranges from
a conservative figure of 3.5 million to more than 10 million.

8\. Future Demographic Trends Predict That Many Americans of All Income
Levels Will Need Access to Affordable LTSS (Chapter 2)

A. Regardless of the definition of the target population, there is clear
and undisputable data that the number of people over age 65 with ADL and
IADL limitations is growing and will double by 2030.

B. Twenty percent of people age 65 and over will require assistance with
at least one ADL and 50 percent will require assistance by age 85. The
number of people in need of assistance with two ADLs will grow from 1.8
million to 3.8 million by 2045.

9\. Disability Rates Declining for Seniors and Impact on Future LTSS
Utilization and Costs Is Unclear (Chapter 2)

A. The rate of disability has declined in the 65-and-older population,
mostly for IADLs. It is less clear whether this decline is due to health
improvements or environmental changes because of increased technology
for durable medical equipment, including assistive technology. However,
the rate of disability for individuals 85 years and older is expected to
rise as this population triples over the next 30 years.

10\. Disability Rates Rising for Individuals Under Age 65 and Impact on
Future LTSS Utilization and Costs Is Unclear (Chapter 2)

A. The rate of disability for individuals under age 65 is rising in
diabetes, obesity, and mental illness. Little data is available that
accurately predicts how this will impact future LTSS utilization, costs,
and service delivery.

B. It is unclear what LTSS truly looks like for individuals under age 65
across disabilities and specific age groups for those working and living
independently. The research shows that individuals under age 65 are
heterogeneous and have specific needs according to gender, age, and type
of disability that are quite different from individuals over the age of
65.

11\. Individuals Under Age 65 Receive Less Personal Assistance and Are
More Likely To Be Nonwhite (Chapter 2)

A. Individuals with two or more ADL limitations and personal assistance
needs under the age of 65 estimated a shortfall of 16.6 hours of help
per week and were more likely to be nonwhite, female, and living alone.

B. Paid personal assistance services go primarily to people 65 and
older, and working-age people 65 and under rely more on unpaid personal
assistance services.

12\. Increased Life Expectancy for People with Lifelong Disabilities and
Its Impact on LTSS Utilization and Costs Unstudied (Chapter 2)

A. Individuals with lifelong disabilities, such as Down syndrome,
cerebral palsy, and mental retardation, are living longer and the impact
on utilization of LTSS services and future costs is unclear from the
current literature.

B. It is unclear what future services and supports, including access to
housing, transportation, and nutrition, will be in most demand for
people under age 65 with lifelong disabilities living and working in the
community.

13\. LTSS Needs Among Minority Populations and Impact on Future
Utilization and Costs Needs Study (Chapter 2)

A. Black children are 13 percent more likely than white children to have
a reported ADL limitation. A recent Government Accountability Office
study confirmed that the black population has higher disability rates
and lower lifetime earnings and shorter life expectancies than whites.

B. The issues of poverty, lack of insurance, and continued segregation
from affordable and consistent health care will increase the future
needs and costs for LTSS for minority nonwhite populations in the U.S.,
which are projected to make up 50 percent of the American population by
2050.

14\. Growing Prevalence of Mental Illness and Its Impact on Future LTSS
Utilization and Costs Unknown (Chapter 2)

A. The prevalence of chronic disease and deaths caused by
noncommunicable disease in the United States between 1990 and 2020 will
increase from 28.1 million to 49.7 million, an increase of 77 percent.

B. Mental illness will rank number two after heart disease and replace
cancer by 2010 as having a greater impact on death and disability.
Medicaid is the principal public payer for mental health services and
represents 36 percent of the \$48 billion in spending. It is unclear
what the future LTSS needs and costs will be for people with mental
illness.

15\. Medicaid LTSS Not Designed to Support Growing Need of Middle-Income
Population (Chapter 2)

A. The current system of LTSS is designed for low-income individuals and
is unsustainable under the current system of health care that has
expanded Medicaid options to provide services and supports to an array
of middle-income and uninsured individuals.

B. There are 57 million working-age Americans between 18 and 64 with
chronic conditions such as diabetes, asthma, or depression, and more
than one in five (12.3 million) live in families that have problems
paying medical bills. Many are not eligible for LTSS services because
they have assets above prescribed limits.

C. The number of chronically ill people with private insurance who spend
more than 5 percent of their income on out-of-pocket health care costs
increased by 50 percent, to 2.2 million people, in 2003.

D. The impact on LTSS costs are unclear for 6.6 million individuals with
chronic care needs who are uninsured and go without needed care (42%),
delay care (65%), or fail to get needed prescriptions (71%), but they
will impact future need and costs without timely intervention.

[16.]{.smallcaps} Growth in Medicaid Spending Is Unsustainable (Chapter
2)

A. Eligibility and service pathways to state Medicaid programs have
expanded to meet the growing needs of 53 million low-income,
middle-income, and uninsured acute care and LTSS beneficiaries, and
reflect the growing challenges of economic downturns, increased health
premiums, increased longevity, a low savings rate, and slower wage
growth.

B. Twelve percent of \$329 billion combined state and federal funds in
2005 was spent on LTSS.[^3]

C. Seven million individuals are dually eligible for full Medicare and
Medicaid benefits and another 1 million receive assistance with copays
and deductibles; combined, this represents 42 percent of all Medicaid
expenditures.

D. The ability of states to respond to current and future LTSS needs is
beyond their capacity and resources as long as health care costs
continue to rise at double-digit rates.

17\. Two-Thirds of Medicaid Spending for Optional and Not Mandatory
Service (Chapter 2)

A. Two-thirds of Medicaid spending is for population groups and services
technically defined as optional, and 90 percent of all long-term care
Medicaid services are optional. It is unclear how vulnerable people with
disabilities are, with the majority of their services and funding
falling under optional categories.

B. Seventy-five percent of home- and community-based services (HCBS)
waivers are for people with MR/DD and are used to purchase LTSS. The
other 25 percent are used for people with physical disabilities and
older people. There are three small waiver programs that serve
individuals with a primary diagnosis of mental illness, accounting for
0.2 percent of HCBS waiver expenditures. Further research is needed to
explore the LTSS needs of the 25 percent population using HCBS.

18\. Medicaid Administrative Costs Need Further Research (Chapter 2)

A. Research is needed to further determine whether Medicaid
administrative costs meet the federal basic guidelines that "costs be
allowable, reasonable, and allocable for reimbursement under Federal
awards."[^4]

[19.]{.smallcaps} Many Uninsured Americans Are Working (Chapter 2)

A. Forty-nine percent of the 45 million uninsured Americans are either
self-employed or work for companies with fewer than 25 employees.

B. More than 50 percent of low-income employees of small firms with
incomes below 200 percent of the federal poverty level are uninsured.

C. More than 2 million health care paraprofessionals report wages below
the poverty line, do not work full time, and do not receive benefits.

20\. Long-Term Care Insurance Designed Mostly for Seniors and Not
Individuals Under 65 with Disabilities (Chapter 2)

A. Private LTSS insurance is targeted to individuals age 65 and older
and often to specific disease categories. One insurance company reported
that more than 50 percent of its LTSS insurance claims paid are for
Alzheimer's and other forms of dementia.

[21.]{.smallcaps} Risk of Disability Is Higher Than Premature Death at
Age 45 (Chapter 2)

A. The risk of disability is higher than premature death and is higher
for older people than younger, and females are more likely to become
disabled than males. A 45-year-old individual earning \$50,000 per year
and suffering a permanent disability could lose \$1,000,000 in future
earnings.

B. The public overestimates the help that is available from public
disability insurance programs---Social Security Disability Insurance
(SSDI) and other state-mandated, short-term programs. Workers
compensation benefits cover only disabilities caused by injury or
illness arising on the job---only an estimated 4 percent of
disabilities.

[22.]{.smallcaps} Congress Needs Research on the Current and Future
Utilization and Costs of LTSS for Individuals Under Age 65 and Their
Informal Workforce (Chapter 2)

A. Congress needs sufficient data on LTSS costs and utilization for
individuals across the spectrum of disabilities under age 65 to develop
a sustainable and affordable LTSS policy.

B. Congress needs sufficient data that responds to the demographics that
predict a decrease in the current population of informal caregivers
(valued at \$200 billion a year) and the impact of this trend on the
development of a future LTSS workforce.

C. Research is needed on the different public and private cost-sharing
scenarios that focus on the under-age-65 population with disabilities
and the relationship between public financing and private insurance to
develop affordable products that insure against future risk of
developing or being born with a disability.

[23.]{.smallcaps} Changing Global Demographics and Economic Impact on
Future LTSS Policy Unclear (Chapter 2)

A. The global economic picture and changing demographics, in addition to
the current U.S. federal budget deficit, raise new questions about the
sustainability of current entitlement and social programs and their
impact on beneficiaries with disabilities.

B. Current state and federal budget deficits and funding priorities
jeopardize a patchwork system of services and supports that do not meet
the current needs of the target population, let alone those projected
into the future.

[24.]{.smallcaps} Role of Caregiving and Workforce Issues in
Understanding Future LTSS Costs Unclear (Chapter 2)

A. 44.4 million American caregivers age 18 and over provide unpaid care
to an adult age 18 or older. Six out of 10 of these caregivers work
while providing care; most are women age 50 years or older.

B. Jobs for nurses' aids are expected to grow by 23.8 percent, while the
employment of personal care and home health aides may grow as much as
58.1 percent between 1998 and 2008.

C. It is unclear how many workers (the "gray market") are hired and
supervised by consumers who pay for their own care, although the numbers
are thought to be substantial.

D. Direct care workers (3.1 million) are in short supply and have nearly
a 100 percent turnover rate in nursing facilities; home care agencies
have annual turnover rates between 40 and 60 percent.

E. Direct care workers have low median hourly wages of \$9.20 an hour
and one-fifth (far more than the national average of 12 to 13 percent)
earn incomes below the poverty level; 30 to 35 percent of all nursing
home and home health aides who are single parents receive food stamps.

25\. LTSS Not Portable Across States (Chapter 2)

A. LTSS are not portable and cannot be moved with an individual from
state to state, and current LTSS costs are not a customized response to
individual needs.

B. Current costs reflect matching an individual's circumstances to
available services and supports, based on federal eligibility criteria,
with degrees of consumer choice and direction that vary based on the
state in which the individual lives.

C. The fiscal health of each state (and its ability to provide the
necessary match to draw upon federal Medicaid resources) determines the
scope and array of the current LTSS system for low-income Americans with
disabilities and seniors.

D. The personal assistance service needs of an individual in California
could be similar to someone living in Mississippi, and yet the
availability of services and funding may vary dramatically.

[26.]{.smallcaps} LTSS Public Policy Is Necessary to Increase Positive
Employment Outcomes for People with Disabilities (Chapter 2)

A. It is unclear how Americans with lifelong disabilities under age 65
can become self-sufficient and economically independent through work and
build careers without substantial LTSS reform that allows asset growth
and more innovative public-private support for LTSS.

B. It is unclear how Americans with or without disabilities will provide
for their own health care and LTSS in the future without changes in
savings behavior and the development of insurance products that protect
against the risk of disability.

[27.]{.smallcaps} External Advisor and External Policymaker Findings for
LTSS Action Similar to State Findings (Chapter 3)

A. Similar to the state findings, the advisory group encouraged moving
any LTSS policy discussion away from the current medical status and
disability type to a standardized assessment process to evaluate
functional needs related to ADLs and IADLs.

B. There is a need to reevaluate financial eligibility criteria and
develop an expanded benefits menu that organizes service options from a
presumption of individual preference for remaining at home and in
community settings. The panel, without describing benefits coverage in
detail, recognized that different people have different needs. As a
result, the benefits coverage based on functional assessment must be
flexible, individualized, and comprehensive. Nursing home level of care
should be shifted from an entitlement status to an option of last
resort.

C. The system should offer more consumer choice and direction in
determining needs, creating a service plan, and directing and managing
provider selection and service delivery.

D. The system should provide incentives to support and encourage family
caregiving, and consider tax incentives to help defray expenses of
dependent care for LTSS.

E. Federal authorities should agree on key outcomes and a measurement
system. Shared information and data collection and analysis across
agencies in multiple settings should help improve understanding of
cost-effectiveness based on different service delivery models.
Performance outcomes should focus on wellness, productivity, inclusion,
and independence.

F. The cost should be spread across all wage earners over a lifetime as
part of a social insurance financing framework. Similar to the approach
of social security and Medicare, individual needs will vary over a life
span.

G. The system should decouple eligibility for benefits from current
requirements of impoverishment for individuals and families.

H. The system should provide support and incentives to encourage family
support and informal caregiving to be balanced with public funding and
responsibility. Key outcomes should be defined on an individual and
systems level that focuses on wellness, productivity, inclusion, and
independence.

[28.]{.smallcaps} Selected State Strategies for LTSS Are Promising
(Washington, Vermont, Minnesota, Texas, and Indiana) (Chapter 4)

A. States have ongoing, intensive, comprehensive planning processes that
involve a full range of stakeholders---from state officials to providers
to advocates and people with disabilities themselves---and the
commitment and support of the governor and legislature.

B. Planning includes realistic accounting of the state's fiscal
situation, availability of federal money, community partnership
building, implementation of cost-limited regulatory changes, and
benchmark settings to measure results.

C. States are experimenting with merging, consolidating, and combining
nursing home and HCBS dollars to better allocate funds according to the
needs of people with disabilities and developing single-point-of-entry
systems at the local level to encourage easier access to LTSS.

D. States are experimenting with global budgeting that allows budgeting
practices to blend (to some degree) institutional care and HCBS dollars
and allows states the flexibility to respond to the preferences of
people with disabilities to remain at home or in the community.

E. States are broadening HCBS to allow greater numbers of people with
disabilities the opportunity to direct their own care (for example,
hiring, training, and supervising their workers).

[29.]{.smallcaps} States Are Living Laboratories for Future LTSS Policy
Development (Chapter 4)

A. The *Olmstead* decision stimulated executive and legislative review
of the current system of service delivery, unmet needs of target
populations, and where the dollars are being expended.

B. Cross-agency planning is most effective when the consumer stakeholder
voice is included as part of the process to develop recommendations for
systems reform.

C. Structural changes have involved substantial reorganization to an
umbrella department for multiple target populations with long-term
support and service needs.

D. Expanded use of Medicaid waivers is common to broaden benefits and
LTSS to subpopulations.

E. The most restrictive policy most frequently identified was the
Medicaid institutional bias.

F. There remains confusion in the use of language regarding long-term
care and LTSS.

G. All selected states have waiting lists for specific target
subpopulations, although states may limit services and operate the
waiver on less than a statewide basis.

H. Current budget challenges at a state level have compelled states to
reexamine the balance between public and private responsibility for
LTSS, evaluate approaches to target individuals based on an assessment
of level of need, and seek to identify strategies that encourage
coverage of supports through some type of insurance coverage and other
private sector resource sharing.

[30.]{.smallcaps} Local and Individual Strategies for LTSS Require
Fresh, Creative Thinking That Reanalyzes the Use of Public and Private
Resources (Chapter 5)

A. There is growing recognition that a fundamental shift in values is
occurring as states move LTSS to the community and home and out of the
institutions. Individuals with disabilities are being provided with more
choices to live independently.

B. New housing models with cooperative organizational structures are
providing a realignment of service and financial relationships at an
individual and community level and recognize the importance of consumer
choice and direction.

C. New economic models for managing assets include pooled trusts,
supportive corporations, time banks, and child trust funds, and raise
important questions about public versus private responsibility to create
and manage a social safety net for individuals deemed in greatest need
of long-term support.

## Recommendations for Incremental and Clean Slate Reform (See Chapter 6 for full text and implementation lead for each recommendation)

[1.]{.smallcaps} Increase Policymaker Knowledge and Understanding of
Public and Private Costs and Benefits of LTSS for People with
Disabilities Under Age 65 and Their Families (Chapter 5)

A. The lack of data that presents a complete and accurate picture of the
costs for LTSS for families with children or adults with disabilities
was a key finding by NCD researchers. Despite multiple studies by the
Congressional Budget Office (CBO) and other federally sponsored research
centers on the costs of long-term care for seniors, the population under
age 65 with disabilities has not been a priority. The traditional
definition of long-term care identified acute care needs as well as
nonmedical services and supports for seniors. Today's definition of
long-term care has changed to reflect the ongoing growth and integration
of disability into mainstream culture. LTSS for people 65 years and
younger is about many nonmedical services and supports, such as personal
assistance, assistive technology, financial management, housing,
transportation, and nutrition. How people are assisted in compensating
for loss of ADLs will define their future earnings potential and
economic independence.

[2.]{.smallcaps} Design and Implement a Multifaceted Action Plan of
Monitoring and Oversight of State Activities to Meet Their ADA
Obligations as a Result of the *Olmstead* Court Decision (Chapter 5)

A. The *Olmstead* Supreme Court decision in 1999 provides important
legal support for states' current efforts to rebalance their LTSS
systems toward home- and community-based settings. The Administration,
through an Executive Order and grant activities, has taken seriously the
Court's decision and mandated a state planning process to improve and
expand community-based choices for people with disabilities. More than
\$200 million has been awarded by the Centers for Medicare and Medicaid
Services (CMS) to states on a competitive basis to promote system
changes. Despite these efforts, litigation continues to expand in class
action suits. In more than 25 states, individuals with disabilities have
been frustrated with the pace of change and the slow movement of funding
away from nursing homes and institutional settings to communities.

B. The Office for Civil Rights at the Department of Health and Human
Services (HHS) and the Justice Department have the responsibility to
monitor and oversee *Olmstead* state plan implementation. As both
agencies have done on numerous occasions in the past related to ADA,
there is an opportunity to be proactive and design and implement an
action plan that evaluates individual state efforts to meet the
*Olmstead* community imperative mandate. Each state should be
rebalancing its financing, reducing the number of individuals with
disabilities residing in nursing homes, diverting others from entering
nursing homes, and putting in place the infrastructure for expanded HCBS
for individuals with disabilities.

[3.]{.smallcaps} Decouple Eligibility for Home- and Community-Based
Services Under an HCBS Waiver from a Determination of Nursing Home
Eligibility (Chapter 5)

A. It is necessary to remove the institutional bias in the Medicaid
program to give Medicaid beneficiaries greater choice in how financial
assistance is provided to cover a range of LTSS. The clear majority of
stakeholders recognized the overwhelming consumer preference for HCBS.
Two complementary options deserve immediate attention from Congress and
bipartisan support.

B. The first option is to shift the HCBS program from its current waiver
status to a state plan requirement. Eligibility would be delinked from
nursing home eligibility and states would receive an increased federal
match under their state cost-sharing agreement for services provided in
this category as part of their Medicaid reimbursement for authorized
expenditures. CMS would set guidelines for a functional assessment
process and minimum threshold of services to be covered, including
personal assistance services.

C. The second complementary option would be that federal funding follows
the person from a nursing home to a community setting as part of a
person-centered plan and self-directed budget. The Money Follows the
Person (MFP) option would continue for a three-year period to help
support successful community transition. Both options are currently part
of legislative proposals before Congress. MFP and the Medicaid Community
Attendant Services and Supports Act (MiCASSA) deserve to be the focus of
hearings before the end of the year.

[4.]{.smallcaps} Increase Support for Families and Significant Others in
Their Role as Informal and Unpaid Caregivers for Individuals with
Disabilities Over and Under the Age of 65 (Chapter 5)

A. Eligibility for LTSS and the scope and intensity of covered services
varies significantly from state to state. States have considerable
discretion in determining who their Medicaid programs cover. Despite
state variability in criteria for Medicaid eligibility and scope of
benefits, in all states, individuals with disabilities are dependent on
informal caregivers, including parents, family members, and significant
others. The estimated benefit of informal caregiving exceeds \$200
billion annually. Services should be designed to support, not supplant,
the role of the family and actions of informal caregivers. Increased
support for informal caregiving could be achieved through implementation
of a complementary set of recommendations. There is a need to address
the lack of portability from state to state for Medicaid LTSS.

[5.]{.smallcaps} Improve the Supply, Retention, and Performance of
Direct Support Workers to Meet Increasing Demand (Chapter 5)

A. As part of the *Olmstead* guidance, CMS should issue an advisory
letter to state Medicaid directors directing corrective action to
achieve parity of compensation across the environments where direct
support workers are located.

B. CMS should continue to fund demonstration projects to allow states to
test innovative strategies to improve the recruitment, supply,
retention, and performance of direct support workers.

C. Funding should be authorized for collaborative demonstration projects
between the U.S. Departments of Labor and HHS that promote collaboration
between community colleges and disability-related organizations to
develop a high-quality set of competencies to be taught in a new support
worker certificate program that expands supplies of quality workers to
meet market demand in home- and community-based settings.

D. Worker cooperatives should be piloted and tested with the assistance
of the Departments of Agriculture, Labor, and HHS to explore improved
consumer-caretaker relationships.

[6.]{.smallcaps} Mandate Coordination and Collaboration Among Federal
Agencies to Align Public Policy and Transform Infrastructure to Be
Responsive to Consumer Needs and Preferences for a Comprehensive System
of LTSS (Chapter 5)

A. Although Medicaid and Medicare dominate the landscape of funding
authorities for LTSS, NCD researchers documented the complexity and
fragmentation of multiple systems with different rules of eligibility
and lack of information on access to and availability of resources. The
fragmentation and coordination challenges carry over from the executive
to the legislative branches of government, in which different committees
in the Senate have different controlling authority than committees in
the House of Representatives. Although Program Assessment Rating Tool
(PART) reviews by the Office of Management and Budget (OMB) are
incorporating common performance measures across agencies and programs,
*there is no focus on cross-department and agency collaboration*. The
nature of LTSS requires more than 200 programs and 20 agencies to
improve their coordination of resources at the community level, where
they will benefit the end-user. No single recommendation can respond to
this significant challenge. NCD recommends that the appropriate agencies
and congressional committees implement the following set of
recommendations:

-   Hold congressional hearings to evaluate possible options for
    improvement of multiple department collaboration to provide access
    to information and supports and services to meet the long-term needs
    of people with disabilities under and over age 65.

-   Require the Department of Housing and Urban Development (HUD) and
    HHS to document current efforts and future plans to improve and
    expand the availability of affordable, accessible housing that is
    coordinated with services/supports, when needed. Establish an
    Interagency Council on Meeting the Housing and Service Needs of
    Seniors and Persons with Disabilities.[^5] (See chapter 6 for a
    description of the full role of the council.)

-   Add to the PART performance criteria indicators that will evaluate
    documented outcomes from intra-agency and cross-agency collaboration
    to meet LTSS needs of people with disabilities. Consider possible
    financial incentives for agencies that document valued outcomes from
    LTSS system collaboration. Report annually to Congress on individual
    agency performance in this area.

-   Issue a new Executive Order charging CMS to chair a time-limited
    workgroup (six months) on LTSS that includes representation by HUD,
    HHS, the Social Security Administration (SSA), and the Departments
    of Education, Labor, Justice, Transportation, Treasury, and
    Agriculture to identify policy barriers and facilitators to an
    improved comprehensive, coordinated system of LTSS for people with
    disabilities under and over age 65 that maximizes interagency
    collaboration, promotes consumer direction, and increases consumer
    choice and access to affordable supports and services in home- and
    community-based settings.

7\. Improve and Hold States Accountable for Rebalancing Their Systems to
Support LTSS (Chapter 5)

A. Study states that are having success with a global budgeting approach
to move their LTSS system from an institutional bias to be anchored by
HCBS and home- and community-based supports.

B. Develop a template in consultation with states to be used to evaluate
and measure current expenditures for LTSS in institutional versus home-
and community-based settings. Such a template would be developed jointly
by CMS and CBO to allow for consistent, comparative benchmarking from
year to year within and among states.

8\. Increase Understanding of the Possible Relationship Between an LTSS
Insurance Product and Publicly Financed LTSS (Chapter 5)

A. Congressional interest remains high to understand and explore further
the possible relationship between the current market for long-term care
insurance products and a reduced dependence on Medicaid and Medicare for
long-term support needs. With the growing cost of Medicaid and Medicare
documented by NCD researchers, there is growing interest in forging a
new level of partnership with the insurance industry that explores both
the expansion of product options and the possible cost savings to the
public system. For people with disabilities under age 65, no such
insurance product yet exists, and little is known about the risk factors
in terms of potential utilization by the target population and how to
achieve affordable pricing. Even with the adoption of several of the
other major recommendations proposed in this report, it is unlikely that
a revised Medicaid program will ever meet the needs of all people who
are seeking LTSS.

B. Conduct a feasibility study of possible new insurance products and
options regarding relationship to the Medicaid program to evaluate
possible strategies to partner an LTSS insurance product with
supplementary Medicaid coverage for people with disabilities under age
65. Consider price, benefit coverage, caps in coverage, and eligibility
for Medicaid LTSS, and project market demand and needed incentives to
share risk among stakeholders: the government, the consumer, and the
insurance industry. The possible collaboration would include the
assistant secretary for planning and evaluation (APSE) at HHS, CMS, and
a private insurer.

C. Pilot test such a product or products to evaluate cost benefits to
all critical stakeholders. Such a pilot must recognize that LTSS must be
individualized to accommodate the needs and desires of the individuals
receiving assistance and that the services and supports must reflect
consumer preference for noninstitutional settings. Such an insurance
product must achieve several objectives: It must be affordable,
flexible, responsive to consumer needs and preferences, and sustainable
over time with federal oversight.

[9.]{.smallcaps} Improve Consumer Understanding, Knowledge, and Skills
to Develop a Person-Centered Plan and Self-Direct an Individual Budget
(Chapter 5)

A. The Cash and Counseling Demonstrations and the Independence Plus
Waivers have produced early positive findings of increased consumer
satisfaction with the self-direction of individual budgets, the
selection of support providers, and increased choice in development of
person-centered plans. Individuals with disabilities and their families
should be given the opportunity to plan, obtain control, and sustain the
services that are best for them in preferred home- and community-based
settings. For people with disabilities who have been given few choices
in the past regarding services and supports and service delivery
options, consumer self-direction requires information, education, and
training to build the critical skills needed to make informed decisions.

B. Access to information about service options, streamlined procedures
for determining eligibility for various public benefits, and new
infrastructure will need to be developed to assist with programmatic and
financial management.

C. Recommendations that recognize the principles of individual
self-direction and responsibility for prudent and effective management
of public resources are critical to the development of the LTSS system
of the future.

D. The system should continue to provide competitive grants that
establish Aging and Disability Resource Centers (ADRCs) in all 50 states
that provide one-stop access to information and individualized advice on
long-term support options, as well as streamlined eligibility
determinations for all publicly funded programs.

E. The system should establish, with funding from CMS, a National
Resource Center on Consumer Self-Direction that identifies and
disseminates best practice information on person-centered plan
development, self-directed management of individual budgets, and
examples of multiple funders combining funds within an individual budget
to achieve common negotiated performance objectives.

F. The system should require states, as part of their HCBS waiver
implementation, to provide education and training to eligible Medicaid
beneficiaries on effective and meaningful participation in
person-centered planning, management of individual budgets, and
negotiation with service and support providers.

G. The system should establish a cross-agency workgroup that involves
CMS, the Administration on Aging (AOA), SSA, the Administration on
Developmental Disabilities, HUD, the Office of Special Education and
Rehabilitative Services at the Department of Education, and the
Department of Labor to accelerate options for states to bundle and/or
braid public funds within a self-directed individual budget with
streamlined and accelerated eligibility procedures.

[10.]{.smallcaps} Continue to Educate People with Disabilities, Their
Families, and Other Critical Stakeholders About LTSS Challenges in
Public Policy and Practice and Document Further Consumer Needs, Costs,
and Preferences for a Comprehensive, Accessible, and Affordable System
(Chapter 5)

A. This report documents the current crisis and the impending "perfect
storm." It is a complex and confusing picture, not easy to grasp and
even more difficult to change as we move forward. NCD must continue to
put the spotlight on the critical set of challenges that in the next 20
years may touch more than half the population of our country. For people
with unmet LTSS needs today, NCD must continue the public education
process through outreach activities and direct discussion with the
disability community and policymakers.

B. A series of audio conferences and a national summit of key leaders
and stakeholders should be held to continue to document the findings and
build consensus on possible policy and practical solutions.

## Recommendations for Clean Slate Reform: Year 2049 (See Chapter 6 for full text and implementation leads and future model)

[1.]{.smallcaps} AmeriWell is a Prefunded, Mandatory, Long-Term Services
and Support Model That Provides All Americans of Any Age with Coverage
from Birth Based on Criteria of Risk and Functioning, and Not Category
of Disability (Chapter 6)

A. AmeriWell delinks LTSS from Medicaid and Medicare, creating its own
governing agency, regulations, oversight, and congressional committee.

B. The contributions of individuals and families, the private sector,
and the Federal Government fund AmeriWell. A "penny pool" is established
through private stock transactions to supplement LTSS costs for
impoverished and vulnerable Americans previously served under Medicaid
and Medicare.

C. Medicaid remains a primary safety net for mothers and children.
Medicare continues to provide its health and acute care and limited home
services to individuals 65 and older who are not Medicaid eligible or on
SSDI.

# 

# Chapter 1

# The State of 21st Century Long-Term Services and Supports: Financing and Systems Reform for Americans with Disabilities 

##   {#section-2 .unnumbered}

## Table of Contents Chapter 1

**Page**

**Part I\
Picturing the Problem** 41

**Part II\
Charting the Course** 44

**Part III\
Forecasting the Need** 48

**Part IV\
Dragging Anchor** 55

**Part V\
Introducing the Captain** 62

**Part VI\
Meeting the Crew** 74

**Part VII\
Fueling the Engine** 84

**Part VIII\
Pushing Tugboats** 106

**Part IX\
Harnessing Favorable Winds** 113

**Part X\
Gathering Clouds** 117

**Part XI\
Recharting the Course** 125

**Appendix 1.A** 131

**Appendix 1.B** 132

**Appendix 1.C** 134

**Appendix 1.D** 136

**Appendix 1.E** 137

**Appendix 1.F** 139

**Appendix 1.G** 157

## Part I Picturing the Problem

The "rich picture" methodology for presentation of the state of
long-term services and supports financing and systems reform research.

Some people say that a picture is worth a thousand words. The field of
management often uses a "rich picture" systems methodology, "an
innovative tool that encapsulates knowledge relevant to strategic
reform."[^6]^,^ [^7]^,^ [^8]^,^ [^9] It is often described in the
management literature as a "soft systems methodology" for linking hard
and soft facts in a cartoon-like representation to illustrate a complex
problem simply and clearly. The following research is presented using
the rich picture methodology to capture the current long-term care and
long-term services and supports (LTSS) crisis. The picture and narrative
rely on expert research from the past and present, as well as on
one-on-one open-ended interviews with key stakeholders in the fields of
disability, long-term care, and health care.

The setting for the rich picture is the ocean, with the current LTSS
ship heading toward an iceberg that represents the barriers and
challenges to systems reform. The "cast" for this rich picture will
provide the substantive descriptions and body of research and analysis
about the barriers and challenges of navigating through the current
system of LTSS. The presentation of the research is purposeful, so that
the reader and the researcher can begin the voyage together with a
snapshot of the problem.

The purpose of this research is to produce new knowledge and
understanding of current experience with and future need for affordable
LTSS for people with disabilities. This research on the State of LTSS
Financing and Systems Reform is the first part in a five-part series
that will tell the story of the current LTSS system to set the stage for
the exploration of future market demands and current gaps in supply; to
explore promising state practices and challenges; and to picture what
the 21st century's comprehensive, consumer-responsive system might look
like and make policy recommendations.

The research is based on five assumptions. First, people with
disabilities, whether young or old, desire and deserve choices when
seeking assistance with daily living that maintains their
self-determination and maximum dignity and independence. Second, the
current financing mechanisms (public and private) will become
unsustainable in the near future without significant reform. The system
must be affordable to all Americans regardless of income levels and must
consider opportunities to leverage public and private support in new
ways without impoverishing beneficiaries. Third, there is an opportunity
with the changing demographic picture of the United States to explore
the possibilities of a universal approach to the design and financing of
services and supports that is responsive to individuals under the age of
65, as well as seniors with disabilities, without sacrificing individual
choice and flexibility. Fourth, formal and informal caregiving must be
sustained, examining family needs and workforce recruitment and
retention challenges. Fifth, the approach to quality must examine
consumer direction and control of resources in addition to traditional
external quality assurance mechanisms.

![](media/image4.png){width="6.429166666666666in"
height="8.692361111111111in"}

## Part II Charting the Course

An overview of the context for systems reform and the challenges
inherent in navigating the current waters for people with disabilities
and seniors.

Historians will remember the last half of the 20th century for its
legacy of public policy in health care, education, disability, and civil
rights. It will fill the archives of history as to how a young country,
barely 200 years old, grappled with developing and implementing
equitable and just policy for all its citizens. Although the flurry of
disability policy has waxed and waned with the political, economic, and
social changes of the greatest century in history, it nevertheless
started a critical dialogue about the rights and responsibilities of all
people, of all abilities, toward each other.

The United States enters the 21st century with 35 million people over 65
years of age in relatively good health with independent lifestyles and
less than 5 percent in skilled nursing homes. Not bad outcomes for a
young country when one considers that, historically, only 2 to 3 percent
of the world's population has ever lived beyond 65 years of age. In less
than a century, life expectancy in the United States has increased by 30
years. This phenomenon has also increased the life span of people with
lifelong disabilities, such as Down syndrome and mental retardation. The
increase in longevity is attributed to advances in technology,
sanitation, education, health care, and the environment, coupled with an
abundance of social and fiscal policy that has provided the first-ever
experiment for how a democracy ought to work for its citizens of all
abilities.

Over the second half of the 20th century, health care legislation
evolved to help working Americans meet the rising costs associated with
health care and living longer. The initial Medicare legislation was
designed to insure seniors for acute care needs and short-term
rehabilitation, and Medicaid was to provide health care for poor women,
children, and people with disabilities. For people with chronic,
long-term care needs, the nursing home became the primary option for
care. In the 1960s, there was no companion legislation developed
alongside Medicare and Medicaid that addressed the needs of LTSS. The
civil rights debate was in full swing, but the debate about the rights
of people with disabilities to services and supports outside a state
hospital was in its infant stage. The education movement to integrate
people with disabilities into the mainstream classroom was a decade
away. It was assumed that families would provide the supports and
services and housing for their own family members with lifelong
disabilities; if they could not, the alternative was a nursing home or a
state institution.

It was not surprising that the 1960s Medicaid legislation covered
institutional care and considered it the right response for seniors and
people with disabilities with long-term needs. The movement to close
state hospitals, ironically, began before the Medicare and Medicaid
reform in the 1960s. Deinstitutionalization was viewed by some as an
ethical and moral imperative indicative of the changing philosophy of
care and civil rights for people with disabilities. However, others saw
it as an opportunity to reduce state costs and take advantage of the new
federal legislation that would provide states with resources for
institutional care such as group homes, intermediate care facilities,
and nursing homes.

Today, most Americans, whether with a lifelong disability or a
short-term chronic illness, want to receive LTSS in their homes and
their communities. In the early 1800s, the first health caregivers were
women from local benevolent societies and churches who visited the sick
and the indigent in their homes. In the early 1900s, hospitals and state
institutions for people with mental retardation grew, and caregiving,
although still very much home based, was provided by professionals like
nurses, nursing assistants, and social workers. Today, the majority of
formal and informal (paid and unpaid) caregivers who provide LTSS are
still women. Since 1981, Medicaid policy revisited the home- and
community-based notion of caring by offering waivers to states that
allow federal-state Medicaid dollars to be spent on optional services
rather than just on institutional and home health care. However, the use
of waivers is optional and varies dramatically from state to state, and
waivers serve less than 1 million low-income people needing LTSS.

It is estimated that between 9 and 12 million people over the age of 18
(459,000 under age 18) need LTSS for everyday self-care needs such as
dressing, eating, toileting, shopping, paying bills, or taking
medication. Demographers predict that the senior population of 35
million will double by 2030 and, although disability rates have declined
for this age group, will begin to climb as the category of the oldest of
the old, 85 years and above, increases. The functional as well as
chronic and acute care needs of people under 65 years of age are growing
at a faster rate than for those over 65 years of age, in part because of
improved medical technology, increased life expectancy, increase in
asthma, higher prevalence of diabetes and obesity, and deterioration in
a number of self-reported health statistics.[^10] Eighty percent of
adults receive LTSS in the community in which they live, although 64.3
percent of the Medicaid dollars support caregiving for people in nursing
homes and other facilities.

The United States spent about \$1.24 trillion on all U.S. personal
health care services in 2001, with 12.2 percent (or \$151.2 billion)
spent on LTSS.[^11] Medicaid was the major source of funding, followed
by personal out-of-pocket pay, Medicare, private long-term care
insurance, and a small group of other federal programs. The
Congressional Budget Office predicts that the need for services and
supports will only grow and that more than half of Americans will need
LTSS at some point in their lives. The good news is that the need will
be sporadic for most and long term for but a few. The bad news is that
the current system is designed for low-income individuals who are
nursing home eligible. There are many people with disabilities, young
and old, who will never meet the stringent income and functioning
requirements for care under the current system. It is ironic that
poverty has become the criterion for receipt of LTSS when the United
States spends about \$5,500 per person on health care, 50 percent more
than any other nation in the world.

Financial eligibility criteria for receipt of LTSS through Medicaid
require that individuals have extremely low assets and income to receive
services. Although demographers and economists have forecast the current
crisis, few Americans have saved enough to support any serious long-term
care needs. More than 50 percent of Americans have no access to company
pension plans,[^12] and only about 10 percent have long-term care
policies. As many as 45 million Americans have no health insurance.
Thirty-four percent of people with disabilities have incomes below
\$25,000 a year, and more than 60 percent are asset poor (have only
enough money to survive for three months at the federal poverty rate).
More than 22 percent of Americans are unbanked, which means they are not
saving or investing for future long-term care needs.

Economists are exploring how the increased longevity and decreased
fertility rates will ultimately affect overall the productivity rates of
the American workforce and the ability of the American taxpayer to
sustain current financing for the delivery of the current long-term care
system. Although there is much debate about the economic health of a
variety of our current entitlement programs, there is agreement that
there is a growing imbalance between what the Federal Government will
collect in future benefits and what it has promised to pay. Before the
new prescription drug legislation of 2004, Comptroller General David
Walker of the Government Accountability Office (GAO) said that GAO
simulations for the year 2040 demonstrated that, without reform, federal
income taxes could rise drastically and the nation could see a 50
percent reduction in current spending.[^13] Actuaries are challenged to
provide insurance companies with lifetime cost projections for people
with severe and chronic disabilities who are living longer. Insurance
companies are nervous about predicting future costs for long-term care
as health care costs continue to rise and the profile of the typical
senior continues to change.

Although today's delivery and design of LTSS are guided by a philosophy
that is consumer directed and noninstitutional, the funding mechanisms
are rooted in policy that is 40 years old and that favors "episodic
responses to chronic and acute care needs rather than nonspecific causes
related to old age or as a result of a lifelong disability."[^14]
Regardless of one's philosophy or biases, the current system is fast
becoming financially unsustainable. Even the generous federal waivers
that make it possible for about 1 million Americans to receive services
outside a skilled nursing home come without financial guarantees and are
dependent on the fiscal health of each state. It is highly unlikely that
states will be able to sustain many of these innovative programs without
significant reform in the near future. The current health care system
needs a "companion" system of services and supports that provides a
constellation of consumer-driven options that are supportive,
rehabilitative, medical, and affordable and ensures that people with
disabilities and seniors have dignity and independence. The future of
LTSS is the gateway to a new industry that has the potential to provide
a menu of services that not only maintain or sustain activities of daily
living (ADLs) as in the past, but also promote quality aging and
healthier lifestyles for all people with disabilities.

## Part III Forecasting the Need

A snapshot of public perceptions creating the barriers and challenges to
setting the course for long-term services and supports reform.

### Confusion and Misperceptions

Many Americans (59%) report giving "very little thought" or "no thought
at all" to the issue of long-term care (LTC), and one-third believe
that, if they do need LTC services, Medicare or Medicaid will pay the
bill.[^15] The National Endowment for Financial Education sponsored a
think tank on the issues of LTC and concluded that many Americans are
experiencing a "disconnect" from planning for the realities of LTC.[^16]
A national study on LTC insurance found consumers confused about exactly
what is meant by LTC---some thought it was an entitlement, others a
personal responsibility, and still others were unsure whether it was
about housing, services, or both.[^17] The study found that 25 percent
of those surveyed believed that Medicare or Medicaid would pay for LTC;
34 percent reported that they would never need LTC insurance; and 68
percent reported they would purchase it in the future when and if
needed.[^18]

A survey by the National Governors Association (NGA) found that 85
percent of Americans over the age of 45 have no public or private
insurance protection against the cost of LTC, and states must adopt
innovative strategies to encourage citizens to plan to finance their own
LTC needs. The survey found that many people have the following common
misperceptions about Medicare coverage for LTC costs:

-   Unaware that Medicare covers only 100 days of skilled nursing care
    following a hospital discharge and does not contain a long-term
    component providing for extended community or intuitional care

-   Widespread lack of awareness regarding the high costs associated
    with LTC

-   Wariness about paying LTC insurance premiums to cover services that
    may not be needed for decades

-   Unaffordable LTC insurance premiums for lower-middle-income people

-   Lack of knowledge about the availability of other LTC financing
    vehicles such as reverse mortgages

-   Limited options for lower-middle-income people to avoid spending
    down into Medicaid

-   Lack of stigma or consequences for individuals choosing to spend
    down to Medicaid[^19]

### Attitudes and Preferences

A survey of participants in a four-state Robert Wood Johnson Foundation
partnership for the LTC insurance demonstration project measured
attitudes of the participants about purchasing LTC insurance. The
evaluation reported that individuals who did not have family members to
count on for LTSS and who believed in self-reliance rather than
government involvement were more likely to purchase an LTC insurance
policy.[^20] Most participants were married, college educated, healthy,
and had incomes between \$50,000 and \$100,000 and assets over
\$100,000.[^21] According to the Administration on Aging (AOA) Profile
of Older Americans 2000,[^22] only 14 percent of family households with
a head of household 65 years and older earned incomes between \$50,000
and \$74,000. Married seniors far outrank their single or never-married
and divorced or separated colleagues. Only 4 percent of single or
never-married individuals and 8 percent of the divorced or separated are
age 65 or older.[^23] So attitudes about self-reliance versus government
involvement for married well-off seniors are probably quite different
than the attitudes of 32 million seniors reporting a median working
income of \$14,425, with 34 percent reporting a working income of less
than \$10,000 and 23 percent reporting \$25,000 or more.[^24]

### Postelection Views

America's Health Insurance Plan (AHIP) reported its 2004 postelection
survey findings regarding health care issues of 1,000 people who voted
in the 2004 presidential election and found that 8 out of 10 people
considered health care to be very important but ranked issues of values,
Iraq, the economy, and terrorism before health care. Affordability of
health care was considered important by 67 percent of respondents, and
27 percent were concerned about providing insurance coverage for more of
the uninsured. Almost half reported that the health care system has
features that work well and features that need significant changes.
Eighty-three percent of voters were satisfied with their health
insurance coverage, while only 15 percent were dissatisfied.[^25]

Finally, the Kaiser Family Foundation/Harvard School of Public Health
Survey, January 2005, reported its findings on the Health Care Agenda
for the New Congress. The most important issues or problems the
President and Congress should deal with were the war in Iraq (27%), the
economy (17%), and health care (10%). The Democrats listed health care
as number three of five top priorities, and the Republicans ranked
health care as number four out of five top priorities.

### Lack of Political and Public Will 

The brief review above indicates that the issue of health care, not to
mention the issue of LTSS, is not on the public or political radar.
There is a disconnect from what people think and believe and what is
actually happening in the states and, to some extent, what is happing on
the federal level. This could be attributed to the fact that the LTC
system is designed for low-income recipients, and surveys and polls
reflect the views and perceptions of middle- and upper-income
populations. However, with less than 10 percent of the American
population purchasing LTC insurance, there is a question of how
Americans are actually planning for their aging years. Even the large
volume of research on the topic of LTC and LTSS reflects a high level of
interest and importance by policy leaders, national think tanks, and
major federal agencies. The misperceptions about the role of public
programs in providing LTC for the average American are serious because
they reflect a lack of planning and understanding of the issue. The lack
of public and political will should be of great concern to policymakers
advocating for people with disabilities and seniors in light of
projected federal budget cuts for programs that many believe are growing
at unsustainable rates, such as Social Security, Medicaid, and Medicare.

Durenberger (2003) writes that the LTC debate "lacks a strong wedge"
because, unlike Social Security and its monthly check, there is no
frequent reminder of the need for LTSS in everyday life. Most Americans
believe that LTC "signifies an unstoppable decline that ends in
death."[^26] Many are in denial that LTC is connected to their financial
security and should, in fact, be a part of their retirement portfolio.
What salient issue will create the wedge is unclear, although the
suggestion to link it to financial security is excellent and should be
parlayed into retirement planning for every American.

In addition, Durenberger suggests clarity about what is important and
what is urgent to include in the LTC debate. On the urgent side, he
recommends the issue of reimbursement and the increased Medicaid
matching rates that pushed many states into deficit. The Kaiser
Commission on Medicaid and the Uninsured confirmed that 50 states and
the District of Columbia implemented Medicaid cost-containment
strategies for FY 2003 and FY 2004 and announced plans to make cuts in
their Medicaid programs by limiting eligibility, cutting benefits, or
restructuring prescription drug payment and coverage.[^27] State
budget-cutters are reported as particularly targeting nursing home
reimbursement rates, with Illinois implementing a 5.9 percent reduction
in its nursing home reimbursement rates, and the Kansas Legislature
reducing its nursing home budget by \$8.9 million.[^28] On the important
side of the debate, Durenberger recommends discussion of financing
reform, systemic change, consumer-directed care, and housing. Although
these are the issues most frequently researched, he suggests that they
are not as critical to states' current crises and immediate
functions.[^29] Durenberger explains that the integration of the urgent
and the important issues must be part of the wider national dialogue.
The wisdom in this advice is obvious: If the current policy structure
for LTSS is breaking the bank for states, alternative strategies must be
introduced on a national level to supplement the states in meeting the
demands of their aging populations. Although some states are moving
forward with their own Medicaid reform, it is unclear what the outcomes
will be. A case in point is the recent announcement by Governor Jeb Bush
of Florida that his administration is proposing a transformation of the
state's \$14 billion Medicaid program that serves 2.1 million
vulnerable, disabled, and elderly Floridians. Medicaid spending since
1999 has increased 112 percent and, if reform is not made, there is a
fear that it will collapse under its own weight.[^30] The reform efforts
are defined as a patient-centered vision with three components: basic
care, catastrophic care, and flexible spending.

Robyn Stone (2003) reinforces Durenberger's proposition about the
important issues when she writes that consumer choice has become the
"mantra" of many policymakers, but is a "vacuous" promise at best in the
absence of knowledge about options to make informed choices about LTC
options.[^31] She asserts that communicating about public benefits
requires money and a marketing strategy. Unfortunately, as seen in the
welfare reform of the late 1990s, the lack of marketing information
initially caused a significant drop in the benefit rolls for people
receiving food stamps, Medicaid, and other programs because of the lack
of knowledge or understanding of the rules and policies associated with
the new law.

Joanne Silberner, a health policy correspondent for National Public
Radio, writes that the problem with the current debate about health care
and LTC is that it is an "endless debate" and is not newsworthy, and
that the lack of media coverage is due to the lack of anything new
happening. She compares the LTC issue with Medicare:

"Paul Kleyman, the editor of *Aging Today*, is quite passionate about
issues of aging and LTC. He once complained to me that 'the zookeepers
in politics keep shouting that we have to worry about the pachyderm
Medicare before we cover LTC.' The editors at NPR concur. Medicare is a
topic that we can cover because it is an issue with clear political
agendas. LTC however, is more muddied, and it is not a pachyderm. So the
media covers a budget fight, policy changes, bankruptcies, and scandals
involving LTC."[^32]

### New Language and Definitions

The challenge for the architects of the 21st century's LTSS system is
not just about public perception and lack of media coverage but about
language and actions. The current Administration's assertive actions
following the 1999 Supreme Court *Olmstead* decision has asked states to
develop and implement plans for less-restrictive community options in
care settings of the consumer's choice.[^33]^,^ [^34] The disability
rights movement has spearheaded the rights of people with disabilities
to live in the least-restrictive environment and has expanded the domain
of membership in what was once perceived as an LTC system for people on
social welfare and the old and frail. [^35]^,^ [^36]

The use of people-first language, the dropping of the "care" from long
term, and services defined as "consumer directed" or "consumer centered"
reflect a movement toward a more universal language and acceptance of
the evolution of how we think about the multigenerational aspects of
aging, disability supports, and services. Kane describes the transition
of these slogans into policy, such as the Medicaid home- and
community-based waivers, which use client-employed workers; or the Cash
and Counseling Demonstrations, during which the Medicaid benefit is
cashed out for those who opt for a monetary, although discounted,
benefit.[^37]^,^ [^38]

Several models designed by the leaders of the self-determination
movement for people with developmental disabilities demonstrated
promising outcomes with consumer-driven budgets, which are now being
tested across the age span in a few states.[^39]^,^ [^40] The next
generation of individuals with disabilities and older Americans will
benefit because of the sharing and borrowing of language and policy
across the aging spectrum and disability world that preceded current
reform efforts.

The definition of LTSS covers a daunting range of issues, needs, and
services. The Congressional Record Service defines LTC as "a wide range
of supportive and health services for persons who have lost the capacity
for self-care due to illness or frailty."[^41] LTSS include much more
than health care and is composed of a variety of services and supports
essential to maintain quality of life with maximum dignity and
independence for individuals with disabilities and individuals over and
under 65 years of age. Services and supports include housing,
transportation, nutrition, technology, personal assistance, and other
social supports to maintain independent living.

### Health Outcomes---Another Reason for Reform 

Most LTSS are nonmedical and, when combined with the financing
mechanisms that favor acute care and institutional care, it is like
trying to fit a circle in a square. An examination of health outcomes
for the current system may provide a rationale for why a new financing
and delivery system is needed.

A recent study produced by researchers from the Robert Wood Johnson
Foundation surveyed decades of studies as far back as 1970 as to why
people die premature deaths. The study found that 64 percent of
premature deaths are due to nonmedical environmental or social or
behavioral inputs.[^42] This is not surprising when one realizes that
the focus of health policy over the past 40 years has not been on
prevention or services and supports that could help people with
disabilities maintain quality lives or help people with chronic
illnesses stabilize conditions. Currently, only 3 percent of total
health care expenditures in the United States are spent on well care,
including preventive care.[^43] Although the United States spends 50
percent more than 29 other countries in the developed world for health
care, its health indicators---such as infant mortality and life
expectancy---do not reflect this. Although the United States surpasses
all other countries in its spending (13 percent of its gross domestic
product), 20 percent of Americans remain uninsured for health care
services and 90 percent are uninsured for LTC insurance.[^44]

The LTSS debate may be seen as a political nonstarter when referenced by
the media only in the context of disability and aging, but it
underscores the unpreparedness of the current system to handle the
biggest demographic challenge in the history of its young country. A
textbook commonly used in health policy graduate courses concludes in
its chapter on LTC that the subject is largely ignored for several
reasons: a focus on the "cure rather than the care" in medicine today;
the view of LTC as a low-status service within the health care system;
the lack of sustainable and affordable financing mechanisms; and the
psychological challenges of coping with a disability at the end of
life---all these reasons perpetuate denial and lack of decision making
about the problem.[^45]

## Part IV Dragging Anchor

An overview of the role of history in the evolution of today's
understanding and future forecasting of long-term services and supports
financing and systems reform.

### History as Prologue

In the 20th century, the United States Congress tried six times to pass
national health care, but failed. A critical reason given for this
failure was the lack of consensus that health care should be a right for
all citizens in a free society, subsidized in part by the Federal
Government. Nineteenth-century Americans fiercely embraced the idea of
individualism and the belief that the working and middle classes never
took money not earned. The only exception to this revered ideology was
the military half-pensions that began during the Revolutionary War. The
sentiment of the 19th century Victorian middleclass was unwavering,
holding steadfast to the belief that "American greatness depended at the
very least on idle and working-class Americans not accepting benefits
they had not earned."[^46] However, our 19th century forefathers did
develop the concept of the truly needy and took on the responsibility
(state and local) for funding the first poorhouses and institutions. The
strong characteristic of individualism prevailed, however, and today's
social policy reflects the belief that poverty is an individual problem
and not the result of an economic system.[^47] Unlike Western Europe,
Canada, and Japan, the United States has never embraced the concept of
universal entitlements and is last with respect to its public share of
total health care expenditures when compared with other industrialized
countries (45.4% public and 54.6% private), Canada (69.4% public and
30.6% private), and Japan (79.5% public and 20.5% private).[^48]

George Lundberg, MD, an editor of the *Journal of the American Medical
Association* for 17 years, wrote that the failure of recent health
reform efforts was based on an erroneous assumption that the American
public would accept one level of health care across the board any more
than it has accepted one mode of transportation or housing or
fashion.[^49]

The current system of health care was designed more than 40 years ago
and was the United States' second major attempt since the passage of
Social Security in 1935 in providing income security for its working
seniors, poor mothers and children, and people with disabilities. Health
reform efforts over the last several years have been described as
"incremental" and reflective of the overall public and political opinion
(see part III of this chapter) of the insured. However, what is notably
absent from the current debate is reliable research that spells out the
needs and perceptions about the current LTSS from the uninsured,
underinsured, and people with disabilities.

The dilemma is that American public policy, although based on social
movements and general premises of reason and knowledge, has become
homogenized and does not truly represent the needs of those who are
marginalized, such as the poor and people with disabilities.[^50]^,^
[^51] This "dilemma of difference"[^52] is found in traditions that lean
heavily on universal imperatives that dictate what society ought to do,
resulting in public policy that is "value neutral." [^53] Richard
Bringewatt, president and chief executive officer of the National
Chronic Care Consortium, describes the challenge this way: " The focus
needs to be shifted from the needs of provider systems that were
established in 1965 to the needs of tomorrow. There is no health policy
in this country today---only budget policy."[^54] The Consortium for
Citizens with Disabilities---a national coalition of organizations
working together to advocate for national public policy that ensures the
self-determination, independence, participation, empowerment,
integration, and inclusion of children and adults with disabilities in
all aspects of society---is even clearer with its opposition to any
Medicaid reform efforts that threaten the services and guarantees
currently available under law to people with disabilities.[^55] The
consortium and many of its members know that the dilemma of juxtaposing
budget policy over social policy is that it ignores the human element
and, in this case, people with disabilities and the primary purpose of
the policy in the first place. Should the costs of providing personal
assistance for a working mother who needs help in getting from her bed
to her wheelchair every day take precedence over her need to provide for
her family and manage her life? The dilemma of difference is that it
sets aside an issue such as LTSS as belonging to "the other" and
therefore reduces the sense of obligation or responsibility of the
majority. This dilemma is also seen in the multitude of research
articles reviewed for this report about the financing of LTSS reform.
The "beneficiary story"---how changes in funding would affect people
with disabilities and their everyday lives over time---is noticeably
absent from almost all analyses. Without this information, policymakers
and the public are only privy to half the story: the monetary side of
the policy and not the human side about the impact of the policy on the
lives of millions of Americans with disabilities.

Forecasting a future system of reform requires a look back at the
patterns and trends that paved the way to today's philosophy of caring
and delivery of services and supports. The American system of health
care has two distinct histories. The first, from the 1700s to the early
1900s, was based on a model for caring that was mostly a charity model,
delivered by churches and benevolent groups and subsidized by local
communities and state governments.[^56] Charity care was mostly
nonmedical care given to the sick and indigent by volunteers and nurses
in the home and the poorhouses. The second history began in the 1900s
and is the for-profit health care model we have today, which is highly
professionalized and focused more on cure and treatment than on care.

The following two sections will provide a sketch of the evolution of
American culture and its impact and implications for navigating the
current state of LTSS system reform for people with disabilities with
the hope of "dragging anchor" and moving the dialogue for reform
forward.

### Evolution of American Culture and Its Philosophy of Caring---1800s

The underwriting of human life began in the United States in the 1830s
as the first life insurance policy was written, signaling a major shift
in American values. Never before had America found it necessary to
insure a person's life in the event of death. Mortality was high in the
early 19th century (about 42 years) and the concept of life insurance
buffered the frequency of death by providing financial security for
young families left behind. In the 1860s, the average marriage lasted 15
years before one partner died. Today, by contrast, it is not uncommon
for a married couple to celebrate a 60th wedding anniversary.

In the 1850s, Charles Darwin introduced the theory of evolution that
forever changed the Puritan tradition. Scientific discoveries promoted
new ways of thinking, such as the germ theory, sparking religious
debate. If germs caused disease, what was the role of the Divine? Two
thousand years of western thought on immortality and the afterlife were
suddenly under attack. As with the evolution in the sciences, philosophy
was experiencing similar challenges. Metaphysics and moral philosophy
were shunned as knowledge of opinion and not knowledge of fact. A new
breed of thinkers, weary of their European experience of superstition,
bigotry, religious persecution, and barbarism, emerged with the
skepticism of the ancients and the optimism of the newfound
sciences.[^57] The Enlightenment fathers, as they called themselves,
ironically produced many of the same philosophies they had crossed the
ocean to leave behind. Immanuel Kant described his age as the "Age of
Enlightenment, but not an enlightened age."[^58]

The religious and social values of 19th century America began to change
dramatically as religious clauses were dropped from wills that for
centuries had been the measure of a man's character as well as his
financial worth. As this change occurred, the familiar Victorian
deathbed scene with its personal attending clerics all but disappeared
as the once-public hour of death became private.[^59] The tradition of
burying the dead from home changed as the local cabinetmaker was asked
to open up his parlor and assume the responsibilities for the care and
burying of the deceased. By the 1890s, the death-care industry was
born.[^60]

The first hospitals were primarily of a "religious and charitable
nature" and provided care for the sick rather than medical cures.[^61]
The growth in biomedical science and technology between 1870 and 1920
altered the purpose of the early hospitals and the type of services
rendered. A new medical profession of trained professionals emerged and
the number of hospitals grew from 178 in 1873 to more than 4,300 in
1909.[^62] In the 1840s, a few state mental hospitals were opened and
championed by an extraordinary advocate for people with mental illness,
Dorothea Dix, who was successful in garnering state support.[^63]^,^
[^64] At this time, mental illness was considered treatable, and "moral
treatment" consisted of work, education, and recreation.[^65] It was not
long before the populations and expenditures grew and the standards of
care declined. Institutions became warehouses and one of America's worst
legacies. It is important to note that the first institutions were often
built in the country and away from mainstream activities. Originally,
this was done to create a serene environment. However, similar to the
placement of the early cemeteries away from mainstream cities, this
created a stigma, that the people in institutions should be hidden and
feared. Unfortunately, this stigma prevails to this day about many
people with disabilities, even those not in institutions.

Although institutional care was gaining popularity during this time, 80
percent of Americans, whether ill, aged, or dying, were cared for in
their homes, in contrast to today, when more than 80 percent die in
institutions.[^66] The shift from home care to institutional care during
the 1800s did mean new jobs with the growth of new industries and the
emphasis on professional care. However, charity care survived well into
the early part of the 1900s, predominately for health care. Insurance
for health care was introduced in 1929, although it did not really take
hold until the 1940s, when Blue Cross Insurance was introduced as a
method to help pay for the support of hospitals.[^67]

### Early Settlement and Pauper Laws 

In colonial America, the early settlement and pauper laws were adopted
to confine the movement of the poor and indigent from one town to
neighboring communities, and it was considered illegal for people to
move from one town to another without express permission of the town
fathers.[^68] These laws dated back to the 1500s and were inherited from
our European ancestors.[^69] Local laws favored towns regarding the
wandering poor and people with mental illness or, as they were called
then, the "mentally deficient." It was not uncommon for local overseers
of the poor to try to remove people who were "crippled, feeble, and
mentally deficient" from the town budgets by marrying them off or
removing them from the town under some technicality regarding their
inheritance or the town's settlement laws. It became increasingly
difficult to monitor settlement and pauper laws as the population
considered "mentally ill and mentally defective" grew.

The problem of housing for the poor and people with disabilities was
addressed with the establishment of poorhouses or almshouses, and
legislation allowed towns to tax citizens to build, purchase, or hire a
house of correction or workhouse in which to confine and set their poor
to work.[^70] For example, by 1834, in the state of Vermont, the first
institution for the "relief of the insane" was initiated with a \$10,000
grant from woman in New Hampshire, and the Vermont legislature, in an
unprecedented gesture, appropriated \$2,000 annually for fives years to
help with the costs. The Vermont Asylum of the Insane (known today as
the Brattleboro Retreat) was opened in 1836. It was not until 1921,
however, that Vermont enacted laws in favor of the "crippled and
handicapped," almost 100 years after it provided funding for a state
asylum for mental illness. It was not until 1884 that the state assumed
total support for "mentally defective paupers" regardless of residency;
by 1891, it had opened the Vermont State Asylum in Waterbury for the
"insane."[^71]

### 20th Century---From Charity Care to For-Profit Care

By the 1950s, a new for-profit system of health care had evolved as a
result of advances in sanitation, specialization of medicine, and the
further development of medical research, including discoveries such as
insulin, antibiotics, and anesthesia.[^72] Federal legislation responded
to the problems of employment for people with disabilities as early as
the 1920s with the passage of the Federal Rehabilitation Act. The growth
in the medical sciences, coupled with this legislation, encouraged the
development of rehabilitation medicine for people with physical
disabilities and influenced the quality of life immensely. In addition,
the field of psychiatry grew and new medications for the treatment of
people with mental illness advanced and precipitated the long overdue
deinstitutionalization movement that began in the 1950s. The need for
health insurance grew because of several of the following factors: as a
response to poverty and the aftermath of the Great Depression in the
1930s; as a response to a collective bargaining agreement of the Federal
Government that limited wage increases to workers but not fringe
benefits during World War II; as a response to the passage of the
Hill-Burton Act in 1946 that supplied funds to underwrite new hospital
construction; and as a response to the passage of Medicare in 1965.[^73]

The evolution of care from the home to the almshouse to the state mental
hospital to the private nursing home and now back to the home and
community has one underlying theme: that is, historically, Americans
have provided for the care of their family, loved ones, and the poor
with disabilities. Primary resource documents on what the early charity
care looked like were beyond the scope of this study. However, it is
clear that the care was primarily comfort care with little or no medical
oversight, and the first professionals on the scene, as early as the
1830s, were the visiting nurses or, as they are known today, the
Visiting Nurse Association.[^74] However, the legacy of the state
hospital continues today, with 60,000 people remaining in state mental
institutions, compared with 559,000 in 1955.[^75]^,^ [^76]

As this brief review demonstrates, a new landscape for democracy emerged
during this period in American history. The discovery of electricity;
the inventions of the telegraph, photography, and the steam engine; the
building of American railroads; and the opening of public schools,
coupled with the religious and social revolutions, provided the
foundation for Americans to negotiate their future responsibilities and
commitments to each other. However, for people with disabilities, there
was little negotiating about rights or access to much of this new
landscape. From the opening of the first state hospital in the 1840s, it
would take over a century before the dialogue about the rights of people
with disabilities to live, work, and be educated would begin. America
would continue to sort out its human obligations, and accompanying
fiscal responsibilities at the federal and state level, in creating a
democracy and social contract that included people with disabilities.

## Part V Introducing the Captain

An introduction to people with disabilities, the consumer-directors of
the long-term services and supports system voyage.

### Meet Mary

Mary is 42 years old, recently widowed, and living in a small rural town
in the South. Mary has cerebral palsy and has been in a wheelchair most
of her life. Her husband was her primary caregiver and helped with daily
activities such as dressing and cooking, and he dropped her off at work
every day. Mary works in a day care center 35 hours a week. She depended
on her husband's health insurance but will no longer receive it now that
he has died. She owns a home but has little equity and savings of about
\$10,000. Her husband worked construction and had a small pension plan
that provides her with \$250 a month. Without her husband's income and
health insurance, she may be forced to sell the house. Mary now needs to
hire a personal assistant but is unsure how she will pay for the
services. She has never received public benefits and does not know what
is available. Someone told her she may receive a Social Security
Survivor benefit, but she is not sure. Although she has had cerebral
palsy since she was very young, she has always been independent. Mary
did apply for LTC insurance because she has no family or relatives but
was denied at age 40.

### People Using Long-Term Services and Supports

Demographers predict that the 34 million Americans 65 years of age and
older will double over the next half of the century. The breakdown of
that increase is found in table 1.1 and describes the growth of three
age groups and includes individuals in institutions.[^77]^,^ [^78] It is
estimated that this growth will impose significant pressure on federal
and state budgets that fund Medicaid, because as individuals age, the
prevalence of disability is expected to rise.[^79] Among those 85 years
and older, 21 percent were in nursing homes, and another 49 percent were
community residents with LTC needs.[^80]

### Over Age 65

It is estimated that between ***9 and 12 million people over the age of
18 receive LTSS for everyday self-care needs.***[^81]^,^ [^82]^,^ [^83]
***Six million people over the age of 65*** receive services and
supports, with 4.5 million receiving these services and supports in
their home and 1.5 million receiving them in a skilled nursing facility.
Overall, 60 percent of seniors rely exclusively on unpaid caregivers
(spouse and children) and 7 percent rely exclusively on paid services.
Research is showing a slight decline in disability in the population
over 65 years of age, which is attributed to an overall healthier aging
population.[^84] Stone predicts, however, that the decline in disability
in people 65 and older will be overshadowed by the dramatic increase in
the 85‑plus population.^85^

### Under Age 65

Currently, there are ***3.4 million people under age 65 receiving
services and supports*** in their home or community and another 0.16
million in nursing homes and other facilities.[^85] Overall, nearly
three-quarters of the people living in the community rely exclusively on
unpaid caregivers and only 6 percent rely exclusively on paid services.
The functional as well as chronic and acute care needs of people under
age 65 are growing at a faster rate than for those over age 65, in part
because of improved medical technology, increased life expectancy,
increase in asthma, higher prevalence of diabetes and obesity, and
deterioration in self-reported health statistics.[^86]

### Entrance Requirements 

Entrance into the world of LTSS is based on the functional and financial
profile of an individual. The functioning capacity of an individual to
maintain independence is measured by assessing a person's need for
assistance with activities of daily living (ADLs) and/or instrumental
activities of daily living (IADLs).

***ADLs includes bathing, eating, dressing, toileting, mobility, and
transferring from a bed to a chair. IADLs are tasks necessary for
independent community living and include money management, shopping,
light housework, telephoning, cooking, reading, writing, taking
medications, and accessing transportation.***[^87]^,^ [^88]^,^ [^89]^,^
[^90] In addition to the ADLs and IADLs, LTSS include a medical
component that provides monitoring and routine help for chronic disease;
a rehabilitative component that provides maintenance or stabilization of
a lifelong condition; and a supportive component that provides
companionship, social support, comfort care, and symptom management for
people struggling with chronic disease.[^91] LTSS cover chronic
illnesses (arthritis, cancer, heart disease, emphysema, Alzheimer's
disease, cystic fibrosis); impairments (blindness, hearing loss,
paralysis); developmental disabilities (cerebral palsy, genetic or
congenital defects, seizure disorders); and injuries (paralysis from
head and spinal cord injuries and burns).[^92]

Of the 12 million Americans reporting LTC needs using ADLs and IADLs as
a benchmark, 57 percent were over the age of 65, 40 percent were under
65 years of age, and 3 percent were children.[^93] The prevalence of
functional limitations among people under age 65 (N=229 million) was 2
percent for community residents and 0.1 percent for nursing home
residents.[^94] For people over age 65 (N=34 million), 12 percent were
community residents and 5 percent were nursing home residents reporting
functional limitations.[^95] Functional limitations increase with age,
and 21 percent of individuals 85 years old and older were in nursing
homes, compared with 5.4 percent between the ages of 75 and 84.[^96]
Nationally, patients in nursing facilities averaged 3.89 ADL
limitations. Virginia reported a high of 4.33 ADL limitations and
Illinois a low of 3.32 ADL limitations.[^97] The Urban Institute
Long-Term Care Chart Book 2001 reports that, of the 51 million children
ages 5 through 17 in 1994, less than 1 percent were likely to need some
type of long-term assistance.[^98]

### Challenges of Using ADLs and IADLs 

Many individuals with a disability may be able to function without
performing most IADLs, but they probably could not get through a day
without performing most ADLs. In addition to the functional and
instrumental ADL measurement, cognitive functioning and dementia are
also measured but often difficult to assess.[^99]^,^ [^100] Some
individuals with Alzheimer's may have no ADL dependency, but they cannot
function independently.[^101] The literature reports that there are
probably many people with cognitive limitations that go unidentified
because of the complexity of measuring various types of cognitive
impairments.[^102]^,^ [^103]

### Unemployment and ADLs and IADLs

Economists are studying why there seems to be a decline in employment
since the Americans with Disabilities Act (ADA) was passed in 1990. They
report that people who are unable to work are 10 times as likely as the
rest of the disability population to need assistance with ADLs, and 5
times as likely to need help with IADLs.[^104] In 1980, only 4 percent
of wage-earning adults needed help with ADLs, compared with 5.2 percent
by 1996.[^105] The decline in working capacity and/or the need for
increased assistance with ADLs and IADLs is another variable for
consideration for demographers predicting the future costs of LTSS
needs.

### Recipients of Supplemental Security Income and Social Security Disability Insurance

The Social Security Administration (SSA) administers two income
maintenance programs that provide cash benefits based on disability or
blindness: Social Security Disability Insurance (SSDI) and Supplemental
Security Income (SSI). These programs pay cash benefits to individuals
who are unable to work for a year or more because of a disability. The
SSI programs include asset and resource limits as part of their
eligibility requirements to receive Social Security maintenance
payments. A large percentage of people using LTSS are receiving SSDI and
SSI.

SSI maintenance programs provide payments for total disability, not
partial or short-term disabilities. The definition of disability under
Social Security may be different from other programs. According to a
recent GAO report, the definition of disability under both of these
programs is the same.

An individual must have a medically determinable physical or mental
impairment that (1) has lasted or is expected to last at least 1 year or
to result in death and (2) prevents the individual from engaging in
substantial gainful activity (SGA).[^106] Moreover, the definition
specifies that for a person to be determined to be disabled, the
impairment must be of such severity that the person not only is unable
to do his or her previous work but, considering his or her age,
education, and work experience, is unable to do any other kind of
substantial work that exists in the national economy.[^107]

For most people, the medical requirements for disability payments are
the same under SSI and SSDI, and the same process determines a person's
disability. While eligibility for SSDI is based on prior work under
Social Security, SSI disability payments are made on the basis of
financial need. It is important to note that eligibility for other
government benefits can affect the amount of an individual's Social
Security benefits. Some people have to pay federal income taxes on their
Social Security benefits. This usually happens only if their total
income is high. For people accessing tax credits for LTSS, the impact of
income on the receipt of federal benefits can be troublesome.[^108] In
general, benefits will continue as long as an individual is considered
disabled; cases are reviewed periodically to see if recipients are still
disabled.

### Social Security Disability Insurance

In 1956, Title II[^109] of the Social Security Act established the SSDI
program, which authorized a program of federal disability insurance
benefits for workers who have contributed to the Social Security Trust
Fund and have become disabled (or blind) before retirement age. These
contributions are the Federal Insurance Contributions Act (FICA) social
security tax paid on their earnings or those of their spouses or
parents. Spouses with disabilities and dependent children of fully
insured workers (often referred to as the primary beneficiary) also are
eligible for disability benefits upon the retirement, disability, or
death of the primary beneficiary.[^110]^,^ [^111]

After becoming disabled, individuals have a waiting period of five
months before receiving cash benefits. In addition to cash assistance,
SSDI beneficiaries receive Medicare coverage after they have received
cash benefits for 24 months. Beneficiaries' SSDI benefits convert to
Social Security retirement benefits when beneficiaries reach the
currently approved retirement age.

To qualify for Social Security disability benefits, an individual must
have worked long enough and recently enough under Social Security.
Individuals may earn up to a maximum of four work credits per year. The
amount of earnings required for a credit increases each year as general
wage levels rise. Family members who qualify for benefits on an
individual's work record do not need work credits.

The number of work credits needed for disability benefits depends on an
individual's age when he or she becomes disabled. Generally one needs 40
credits, 20 of which were earned in the last 10 years, ending with the
year one becomes disabled. Younger workers may qualify with fewer
credits.

### SSDI Recipients

According to the 2004 Catalog of Federal Domestic Assistance
(CFDA),[^112] it is estimated that for FY 2004 an average of 7,664,000
disabled workers and their dependents will receive monthly cash
benefits. During FY 2005, the number receiving benefits is expected to
increase to 7,996,000. Researchers report a 67 percent rise in the SSDI
rolls during the 1990s. In 2000, the program provided cash and medical
benefits to 5 million working-age (18--64) adults with impairments,
one-fifth to individuals who also receive SSI cash benefits, and
Medicare after a 24-month waiting period.[^113] Early findings attribute
the growth in this population to a correlation between relaxed
eligibility criteria in the 1980s and an increase in program generosity
for low-wage workers.[^114] It is also reported that the SSI rolls have
increased over this same time period. It is unclear how these trends
will affect the LTSS system's sustainability, but it is clear that a
rise in these populations, in addition to the convergence of the baby
boomers and a rise in the 85-plus population, will require serious
actuarial evaluation.

### Supplemental Security Income Program

In 1974, Title XVI[^115] of the Social Security Act established the SSI
program, a federally administered cash assistance program for
individuals who are older, blind, or disabled and meet a financial needs
test (income and resource limitations).[^116]^,^ [^117]

The SSI program operates in the 50 states, the District of Columbia, and
the Northern Mariana Islands. The program also covers blind or disabled
children of military parents stationed abroad and certain students
studying outside the United States for a period of not more than one
year. The Federal Government funds SSI from general tax revenues. The
basic SSI amount is the same nationwide. However, many states add money
to the basic benefit. Some states pay benefits to some individuals to
supplement their federal benefits. Some of these states have arranged
with SSA to combine their supplementary payment with the federal payment
into one monthly check. Other states manage their own programs and make
their payments separately.

Unlike the SSDI program, SSI has no prior work requirements and no
waiting period for cash or medical benefits. Eligible SSI applicants
generally begin receiving cash benefits immediately upon entitlement
and, in most cases, receipt of cash benefits makes them eligible for
Medicaid benefits.[^118]

### SSI Recipients

According to the 2004 CFDA,[^119] in FY 2003, an average of 6,553,000
people per month were federal SSI recipients. It is estimated that in FY
2004, an average of 6,711,000 recipients received monthly cash benefits.
During FY 2005, the average number receiving payments is estimated to be
6,867,000 per month. These totals and estimates do not include people
who receive only state supplementary payments, some of which are
administered by the SSA for the states as part of the SSI program.

### Social Security Reform

There are currently 3.3 workers for each Social Security beneficiary;
however, by 2031, it is estimated that there will only be 2.2 workers
for each beneficiary.[^120] The future financial stability of the Social
Security benefits program is a major challenge for future policymaking
regarding the design of the LTSS system.

The current political focus on a partial privatization of Social
Security for younger workers raises important questions that require
research demonstrating the impact of reform on the various populations
currently receiving benefits. How would reform preserve current
resources supporting the most vulnerable beneficiaries who cannot
contribute to the system? How would reform impact the stability of the
SSI and SSDI programs? Would recipients be dependent on market
fluctuations or would privatization not affect the SSI and SSDI
programs?[^121] The sections below will describe the maze of
beneficiaries needing LTSS and the challenges inherent in communicating
this information accurately and compellingly to the policymakers.

### Chronic Illness and the Need for Long-Term Services and Supports

People with chronic illnesses are also in need of LTSS reform. About 57
million working-age Americans live with chronic conditions such as
diabetes, asthma, or depression and, in 2003, one out five people (or
2.3 million) had trouble paying medical bills.[^122] Of the 35 million
people on the original Medicare plan (5 million are on Medicare+Choice),
87 percent have one or more chronic conditions, 65 percent have multiple
chronic conditions, and one-third have one or more chronic conditions
that are considered serious.[^123] Chronic illness is defined as an
"illness, functional limitation, or cognitive impairment that lasts (or
is expected to last) at least one year; limits what a person can do, and
requires ongoing care."[^124]

The National Academy of Social Insurance found that Medicare coverage
for chronic illness is lacking in its coverage for a variety of
functional and maintenance rehabilitative services, including coverage
for durable medical equipment supports that usually are only covered if
used primarily in the home.[^125] In addition, beneficiaries reported
that it is often difficult to find physicians who can address functional
and cognitive issues and that more education about self‑management
supports, evidenced-based protocols, health assessments, and telephone
follow-up calls is needed.[^126]

Chronic impairment is measured by the number of ADLs and IADLs a person
needs, whereas eligibility for SSI and SSDI for people under age 65 is
based on the ability or lack of ability to work on specific jobs. Menton
reported that, "the major social security reasons for disability
entitlement younger than age 65 are not obesity and asthma but (in 2000)
job impairments caused by chronic psychiatric problems (27.4%),
muscoskeletal problems (28.7%), and heart disease (10.8%).[^127]

### Dual Eligibility---Recipients of Both Medicaid and Medicare 

Also requiring LTSS are the 7 million "dual eligibles" who qualify for
both Medicare and Medicaid services.[^128] Sixteen percent of Medicare
beneficiaries are dually eligible, and 4.9 million are older than 65
years of age and represent 30 percent of the spending for the Medicare
population. Thirteen percent are under the age of 65 with a disability.
Seventeen percent of the Medicaid population is dually eligible and, in
FY 2000, represented 43 percent of the total Medicaid service spending
of \$168.1 billion.[^129] The largest category of Medicaid spending for
dual eligibles includes LTC, including nursing facilities, home- and
community-based services (HCBS), institutions for individuals with metal
retardation, and other LTC services.[^130] Medicare spending for dual
eligibles is limited to primary and acute care services. The dually
eligible population is the most fragile of all the groups discussed in
this section; they are disproportionately poor, over age 85, nonwhite,
female, and unmarried, with multiple functional and cognitive
impairments, and represent almost half of all Medicare beneficiaries
with Alzheimer's disease.[^131]

### Mental Retardation and Developmental Disabilities Population

In 2002, there was an estimated population of 4,556,966 people with
mental retardation and developmental disabilities (MR/DD). Sixty-one
percent of this population lives with a family caregiver, 15 percent
with a spouse, 14 percent in their own household, and 10 percent in
supervised residential settings.[^132] Total public spending for MR/DD
services in the United States in 2002 was \$34.64 billion. There is an
array of LTSS, including the following: family support services for
people with MR/DD, such as programs and resources to support cash
subsidy payments, respite care, family counseling, architectural
adaptation of the home, in-home training, sibling support programs,
education, and behavior management services; and supported employment,
supported living, and personal assistance designed to increase
individual choice and control over service delivery.[^133]

### One Size Does Not Fit All

Most people do not understand the dollar cost associated with living
with a disability. The "costs of entry" for working, learning, living,
and fully participating in life are higher than the comparable unit
costs for people without disabilities.[^134] Research has examined the
economic costs of mental retardation, cerebral palsy, hearing loss, and
vision impairment and found that "productivity losses make up the
largest fraction of overall costs, accounting for 72 to 83 percent of
costs, and direct medical and non-medical costs account for the
rest."[^135]

According to Stephen Mendelsohn, people working with a mobility
impairment, blindness, or deafness have tremendous add-on costs for
transportation and assistive and communication technology.[^136] Whether
they need an accessible vehicle with a lift or one fitted with adaptive
driving controls, materials in Braille or synthetic speech or
large-print output to access a computer, or a TTY for communicating over
the voice telephone, the associated costs are higher than for people
without disabilities.[^137]

In the area of services, a "sign-language interpreter, the reader, the
attendant service provider, the computer trainer with specialized
knowledge of the interface between complex networked systems and access
technology must be found and paid for."[^138] Many health policymakers
may not be familiar with the nonmedical supports and services that are
unique to people with disabilities and the add-on costs that are
incurred to live normal lives.

Researchers found that access and experience with various services for
adults in community settings does vary depending on the type of
disability, age, and gender for people age 18 to 35 versus those age 36
and older.[^139] In a controlled study between people with one or more
substantial functional limitations who do not meet the criteria of
having a developmental disability and people with developmental
disabilities, those with developmental disabilities had poorer outcomes
and were more likely to "receive, need or be waiting for supports or
services."[^140] The study also found age differences between the two
groups when divided according to age, with those age 36 and older having
"more needs for assistance with specific skills, and more trouble
getting around outside of their homes, and having received more services
and supports related to health care needs."[^141]

Younger adults with disabilities were more likely to need or participate
in employment programs, social skills and communication supports, mental
health services, and generic transportation options that the older
adults.[^142] This study also looked at gender and important differences
were noted. Women were more likely to need assistance with IADLs and
tended to have more needs for LTC and assistance, transportation, and
health care. Men with disabilities were more likely to be in the
workforce and have independent travel options. This study illustrates
the importance of understating the subpopulations of people under age 65
and the variation in their needs according to a number of variables,
such as age, gender, and category of disability. It is clear that "one
size does not fit all" in providing services and supports to people with
disabilities.

A Kaiser Family Survey found that 66 percent of people with a disability
who were uninsured postponed care and 60 percent skipped doses of needed
medication and that this was common behavior for people under 65 years
of age. For people receiving both Medicaid and Medicare, 38 percent
postponed care and 32 percent skipped doses of needed medication. For
people with a disability on Medicare only, 60 percent postponed care and
58 percent skipped doses of needed medication.[^143]

It is clear that the target audience for LTSS is not homogeneous and
varies in age, gender, ethnicity, and category of disability and use of
federal programs. Reform efforts need to develop clarity and consensus
about how to define future services and supports considering the
changing demographics, different eligibility criteria, rising need, and
political urgency.

### Back to Mary

The current system of LTC has little room to accommodate a circumstance
like Mary's. She can either keep working and try to live on the \$1,100
plus \$250 a month she gets and pay for a personal assistant and try to
keep her house, or she could seek to be determined disabled under SSDI's
rules. To support her case, she would have to reduce her work hours so
that her income would be less than \$810 a month. If she applied for
SSDI, she would have to wait two years for Medicare. If she is
determined disabled by SSDI, she may qualify for a home- and
community-based waiver (if there is one in her state and there isn't a
waiting list) under Medicaid and for Medicaid coverage if her income is
at or below 300 percent of SSI (this applies in most states). If Mary
applied for SSI, she would have to divest herself of all assets except
for \$2,000 and, if she were found eligible, she would receive Medicaid
immediately.

Right now, her only access to either Medicare or Medicaid is to meet
disability requirements set by SSI/SSDI. And eligibility for those
programs doesn't necessarily mean she will be able to get a personal
assistant, but they at least open up the possibility of getting one and
having health insurance. Mary may have no choice but to quit her job and
apply for SSI or SSDI.

## Part VI Meeting the Crew

An introduction to the navigators of the long-term care ship and their
role as providers and consumers of services and supports.

### Caregiver Crew 

Half of all Americans in their 50s will need LTSS in their lifetime and,
by 2010, 50 percent of the workforce (people in their 40s and 50s) will
be involved in caring for an older parent or family member with a
disability.[^144] This responsibility is already costing employers an
estimated \$1,000 to \$2,500 per employee in reduced productivity, lost
work time, time off, and stress-related absences.[^145] A MetLife
analysis estimated aggregated costs of caregiving employees to employers
nationwide ranged between \$11.4 billion per year and \$29 billion per
year.[^146] Stone reports that 50 percent of people with disabilities
and older Americans who lack a family member network live in nursing
homes, compared with 7 percent of the same population with
families.[^147] It is estimated that Americans provide 120 million hours
of unpaid care to elders with functional disabilities living in
community settings.[^148] Sixty-seven percent of elders rely solely on
unpaid help; 86 percent of elders with the greatest risk of nursing home
placement (three plus ADLs) live with family members and receive about
60 hours of family care per week, supplemented by 14 hours of paid
assistance.[^149] Women give 75 percent of the caregiving; 31 percent
are in the labor force; 66.6 percent work full time, and they provide 18
hours of care a week and are, on average, 60 years old. Two-thirds of
the women with paying jobs report conflict between their jobs and
caregiving.[^150]

Lechner,[^151] in one of the few studies examining racial and ethnic
differences among African-American working caregivers, found less
support from supervisors and less flexible policies regarding family
concerns than experienced by white caregivers. Neal and Wagner[^152]
reported a slightly higher prevalence of caregiving among
African-Americans and Hispanic families compared with Caucasian
families.

Demographers predict that more women will have less time to provide the
traditional caregiving as workplace pressures continue to grow. Many
employee benefit programs include education about elder care, but they
need updating and expansion to include the multigenerational aspects of
providing more comprehensive life care for employees with caregiving
responsibilities for individuals with disabilities.

Also, on the LTSS ship is the workforce that provides care in the
nursing homes, intermediate care facilities for the mentally retarded
**(**ICF/MRs), group homes, supported living, individual homes and
apartments, and assisted living arrangements throughout the country. In
the next 10 years, 5.3 million health care workers will be needed---3.1
million to fill new jobs and 2.2 million to replace people who have left
the workforce.[^153]

In FY 2002, family members provided "informal" residential care to 2.79
million of the 4.56 million people with developmental disabilities in
the United States, representing six times the number of people served by
the formal out-of-home residential care system (460,455).

Formal and informal caregiving, paid and unpaid, are essential elements
of the current system of LTSS for individuals with disabilities across
the age span. Caregivers provide a range of activities with the time
expended, ranging from a few hours per week to more than 40 hours per
week. The demand on the caregiver will vary by individual situation and
relationships.[^154] The value of people who care for adult family
members or friends and were not paid has been estimated between \$200
billion and \$257 billion annually.[^155] In results of a new study
released by the National Alliance for Caregivers, an estimated 44.4
million American caregivers (21% of the adult population) age 18 or
older are providing unpaid care to an adult age 18 or older.[^156] It
further estimates that 22.9 million households are affected by the
presence of an unpaid caregiver---that represents 21 percent of all U.S.
households.[^157] In defining the relationship between caregiver and
care recipient, 83 percent were identified as related by family or
marriage.[^158]

Several key distinctions emerged from looking at caregivers for
individuals 50 and older and caregivers for individuals 18 to 49 years
old.

-   Caregivers who help someone 50 or older tend to be older than
    caregivers who help someone between the ages of 18 and 49 (mean age
    47 years versus 41 years). The average (mean) age of a younger care
    recipient (18--49) is 33 years and the average (mean) age of a care
    recipient age 50 or older is 75 years.

-   Two in three (66%) of caregivers who help someone between the ages
    of 18 and 49 years are employed full or part time, compared with 57
    percent of caregivers who help someone age 50 or older.

-   Caregivers who help someone 50 or older tend to be better educated
    and earn higher incomes than those helping recipients between 18
    and 49. For example, 37 percent of those caring for people 50 and
    older have a college degree, compared with 26 percent of those
    helping 18- to 49-year-old recipients; and 44 percent helping the
    older set make \$50,000 or more, whereas only 35 percent of
    caregivers helping those 18 to 49 do so.

-   While caregivers who care for someone 50 or older tend to be helping
    their mothers (34%), grandmothers (11%), or fathers (10%), those
    helping someone 18 to 49 are much more likely to be caring for an
    adult child (27%), a sibling (15%), or a nonrelative (25%).

-   Caregivers of younger care recipients (18 to 49) most commonly
    report mental illness or depression as the biggest problem or
    illness for the person they care for (23%). On the other hand,
    caregivers of older care recipients (50 and older) most commonly
    report the main problem or illness as aging (15%), cancer (9%),
    diabetes (9%), Alzheimer's (8%), and heart disease (9%).

-   Caregivers of younger care recipients (18 to 49) are more likely to
    report being primary caregivers (70%) than caregivers of older care
    recipients 50 and older (54%), and tend to be living with the
    recipient (33%) more often than caregivers helping recipients 50 and
    older (22%). In fact, only 38 percent of those helping 18- to
    49-year-old recipients report the presence of some other type of
    unpaid help, whereas 65 percent of those helping recipients 50 and
    older have done so.

-   One in three (33%) caregivers of younger care recipients (18 to 49)
    report assisting the person they care for with at least one ADL,
    whereas more than half (55%) of caregivers helping older recipients
    do so. Instead, caregivers of people 18 to 49 are more likely
    performing IADLs, especially helping manage finances (79%) and
    transportation (77%).

-   While nearly half (46%) of caregivers helping someone 50 or older
    not in a nursing home receive some type of paid help, only 23
    percent of those caring for 18- to 49-year-old recipients have done
    so.

-   Caregivers who help younger care recipients provide an average of
    \$205 per month financial support. Caregivers who help older care
    recipients provide an average of \$197 per month. Caregivers of
    younger care recipients are more likely to report financial hardship
    (25% rate 4 or 5 on a 5-point scale) than caregivers of older care
    recipients (9%) and to report having requested information about how
    to get financial help for the recipient (35% versus 22%).[^159]

Appendixes 1.A and 1.B highlight some further distinctions between
caregivers for younger versus older adults with disabilities.

Regardless of the age of the caregiver and the age of the recipient of
assistance, 67 percent of caregivers reported needing assistance with
one or more of the following challenges: finding time for myself (35%),
managing emotional and physical stress (29%), and balancing work and
family responsibilities (29%).[^160] Almost half the caregivers reported
spending more than 8 hours per week helping the relative or friend for
whom they provide assistance and almost one in five report providing 40
or more hours of assistance.[^161]

Services provided weekly as a caregiver, in priority order or frequency,
include transportation, shopping, housework, managing finances,
preparing meals, arranging services, dressing, bathing, toileting, and
feeding.[^162] These findings reaffirm conclusions by other studies
conducted by the Federal Government and private researchers during the
past 10 years:

-   Family caregivers provide approximately 80 percent of all LTSS for
    family members and friends across the life span.[^163]

-   Out-of-pocket medical expenses for a family with a family member
    with a disability or chronic condition who needs help with ADLs are
    more than 2.5 times greater than for a family without a member with
    a disability (11.2% of income compared with 4.1%).[^164]

-   Over the period of caregiving, family members providing intense
    personal care can lose as much as \$659,000 in wages, pensions, and
    Social Security.[^165]

-   Respite care, one of the most frequently requested family support
    service, has been shown to help sustain family stability, avoid
    out-of-home placements, and reduce the likelihood of abuse and
    neglect. However, respite care remains in short supply for all age
    groups.[^166]

-   An assessment of family caregiver strengths, needs, and preferences
    constitutes the foundation for developing appropriate and quality
    LTSS.[^167]^,^ [^168]

As a key human resource to navigate the ship in the future, family
caregiving is an essential part of the system of LTSS. However, from a
philosophical and financial perspective, there is little agreement on
how best to divide responsibility between the public and private
sectors, between families and government.

As a starting point, the National Alliance for Caregiving sets out
several defining principles to develop an appropriate balancing of
interests:

Public policy must not assume that family members can always provide
assistance for a frail elder or person with disabilities. Public policy
also must not assume that the availability of family members or others
to provide uncompensated assistance is the criterion to be used to
allocate long-term support resources. An assessment of family caregiver
strengths and needs must be a part of a more comprehensive assessment of
need for the individual and family.[^169]

#### Workforce Challenges

Between 2002 and 2012, the Bureau of Labor Statistics projects
employment growth in demand nationally for direct care workers at more
than double (33.8%) the projected growth in overall employment
nationally (14.8%).[^170] Based on a 2003 survey of state Medicaid
agencies, 35 states continue to consider workforce issues in the
delivery of long-term services a serious issue.[^171] The shortage of
qualified, reliable direct care/support workers has a direct impact on
the health and safety of individuals with disabilities in need of
assistance with ADLs. But it also has a direct impact on the health and
well-being of family caregivers who must take on added responsibilities,
much of which require training and support they do not have.[^172]

Unfortunately, workforce challenges are expected to get worse as the
baby boom generation ages and places more demands on the LTSS
system.[^173]

At the national level, two major initiatives, one public and one
privately funded, have started to respond to challenges of workforce
recruitment and retention. In 2003, the U.S. Department of Health and
Human Services (HHS) awarded demonstration projects to five states to
pilot and evaluate a range of activities, including making health
insurance coverage available to direct care workers and creating
training and mentoring programs to improve worker skills.[^174] At the
end of 2003, the Robert Wood Johnson Foundation funded coalitions in an
additional five states to implement policy and practice changes to
improve the ability to attract and retain high-quality direct care
workers in home and community settings.[^175]

At a state level, a recent trend in public policy is to tie outcomes
related to certain quality measures to increased reimbursement for
long-term service providers. The ability to tie outcomes effectively to
reimbursement will depend on states' development of the necessary data
and evaluation systems to collect and analyze required data to verify
that the intended outcomes have been achieved.[^176]

For the past three years, challenges with budget shortfalls at the state
level have resulted in reductions, termination, or delays in a number of
direct care workforce initiatives to improve wages and benefits as well
as education and training programs.[^177] It is premature to evaluate
findings from either the national or state initiatives described. In a
paper prepared for the American Association of Homes and Services for
the Aging and HHS, which described approaches to be considered in
modeling the future supply and demand for LTC workers, Holzer points out
that economists generally believe that market forces tend to eliminate
shortages in the labor market over time. If wages and benefits are free
to adjust, worker shortages should lead to higher compensation levels in
a given market, which should then add to the supply of labor in that
field and result in easing the shortage.[^178] However, typical free
market forces are constrained by the dominance of Medicare and Medicaid
as the majority funders of LTSS. Both public financing systems will
continue to be pressured to reduce costs based on their rate of growth,
growing demand for services, and the larger picture of budget deficits
at the federal and state level.

### Federal Decision-Making Crew

Paid and unpaid caregivers are most affected by the federal
decision-making crew. Authority for decision making in the executive and
legislative branches of the Federal Government is dispersed among many
key stakeholders with a complicated chain of command.

The critical question of who will lead future policy development
requires an analysis of who is authorized at a federal level with
decision-making authority. Such an analysis reveals that there is no
single federal agency charged with the development of a comprehensive
and coordinated system of LTSS. The evolution of public policy regarding
LTSS does not rest with a single congressional committee in the House or
Senate. The navigators for the ship at the federal level in the
executive and legislative branches of government face a daunting
challenge to pull the pieces together across entitlements and
discretionary authority and multiple jurisdictions. The tables in
Appendix 1.G divide current programs and services that are relevant to
the discussion of future policy development into nine major areas of
life domains: federal health care, social and in-home supports, income
maintenance, housing, transportation, nutrition, technology, civil
rights, and caregiver support. The lines of authority and oversight in
the Senate are not the same as those in the House of Representatives.
There are five full committees in the Senate with distinct authorization
and oversight responsibilities for specific programs, services, and
benefits. In addition, there is a separate budget and appropriations
process with additional full committees with specific responsibilities
on the House and Senate sides. Within the executive branch of
government, there are a dozen agencies within six departments charged
with responsibility for the implementation of the identified specific
programs, services, and benefits.

Executive Order 13217, issued by President George W. Bush in 2001,
directs all the relevant federal agencies to evaluate their policies,
programs, and regulations to determine whether any changes are needed to
improve the availability of community-based services for individuals
with disabilities. There have been two published reports on federal
agency actions to date.[^179]

Under a new initiative of the Office of Management and Budget, a Program
Assessment Rating Tool (PART) has been created to evaluate whether
federal programs are effective and well managed across all federal
agencies.[^180] A shortcoming of PART, identified in the recent report
of the President's Committee for People with Intellectual Disabilities
(PCPID), is that PART "does not conduct an assessment across agencies
and programs."[^181] A specific program may score well as currently
configured and yet not be effectively collaborating with other federal
programs and agencies or organizations outside the Federal
Government.[^182] PCPID calls for an "enriched PART to create a new
culture of measurement and accountability that raises expectations for
policymakers, service providers, parents, and individuals with
disabilities" and guides government to respond more efficiently and
effectively to the demands of the target population for improved
personal and economic freedom.[^183]

The crew reflect the complex set of relationships among formal and
informal caregivers and multiple decision makers with specific
designated roles and responsibilities spread through the executive and
legislative branches of the Federal Government. Competing interests seek
to protect and preserve their share of federal expenditures as demand
continues to grow for affordable health care as well as LTSS for a
changing American population.

### State Crews

The states are the engines that drive the delivery and financing of
health care and LTSS in this country. Their fiscal health determines how
much flexibility and innovation they have to fuel their health care
system. Most states want to create a more balanced delivery system of
LTSS to meet the rising demands of their aging populations with and
without disabilities and have used the federal-state Medicaid home- and
community-based waivers for this purpose. Wiener reports that two
important outcomes of the waiver demonstrations have been the
consumer-directed home care movement and the use of nonmedical
residential settings, such as assisted living and adult family
homes.[^184]

A number of states (18 in 2003) offer a tax deduction or credit to their
residents who purchase LTC insurance. However, only 10 percent of
Americans currently have LTC insurance, and a 2002 survey found that
substantial increases in premiums and rate stability continue to
challenge further expansion and marketing to middle- and lower-income
Americans.[^185] A few states have developed public-private partnerships
for people who have purchased LTC insurance and still need assistance
after exhausting their coverage and savings options to come under the
state's Medicaid coverage. Participation in the federal Medicaid LTC
insurance partnership program is considered low.[^186] Early results
suggest that of the 181,600 policies approved since 1993, 88 people (0.5
percent) received Medicaid coverage for their LTC needs and a total of
\$2.8 million in assets are protected for people in California,
Connecticut, and Indiana. Over half of the purchasers, in a survey of
California and Connecticut, had assets of greater than \$350,000; in
Indiana, 60 percent of purchasers had assets greater than \$350,000.
Contrast this with 20 percent of purchasers in California and
Connecticut who have assets of less than \$100,000 (excluding the home).
It is clear that this opportunity has traction for people with
substantial assets. But there is concern that a federal-state policy
such as Medicaid designed to provide health coverage to low-income
mothers and children should help nonpoor Americans protect their assets.

The National Conference of State Legislatures (NCSL) reports that
Medicaid accounts for 20 percent of all state spending, and the largest
single source of public funding for LTSS grew by more than 13 percent
between FY 2001 and FY 2002,[^187] with the National Governors
Association (NGA) reporting a 9.3 percent growth in FY 2003.[^188] The
report found that states cut, froze, or provided only small increases
for nursing home reimbursement rates, and froze new admissions to home
care programs.

The NGA reports that the cost of LTC is rising and that, by 2030,
institutional health care is expected to cost \$200,000 a year compared
with \$57,000 in 2004 for a semi-private room. Average home health care
costs today are \$20,000 a year; by 2030, they are projected to rise to
\$75,000.[^189]

In light of state budget gaps totaling \$78 billion for state FY 2004,
the Center on Budget and Policy Priority reported that Medicaid, State
Children's Health Insurance Program (SCHIP), and other health care
enrollment reductions would affect an estimated 1.2 to 1.6 million
low-income people, half of whom are children and half of whom are
parents, seniors, people with disabilities, childless adults, and
immigrants.[^190] Thirty-four states report adopting such cuts.

However, NCSL reports that states, despite their troubled economies,
declining tax revenues, and expanding Medicaid costs, are making
progress on LTC.[^191] Many states report implementing pilot programs
and, with the help of federal systems, change grants have made some
progress at restructuring LTC and have begun to craft improved access to
LTSS.[^192]

## Part VII Fueling the Engine

An examination of the key federal programs (entitlements and other
discretional funding sources that are means and nonmeans tested) that
provide the fuel for the current system of long-term services and
supports.

Even the most seasoned professional may be surprised to learn the number
of federal programs that make up the constellation of LTSS, their
budgetary priorities, and their rules and regulations. At the federal
and state levels, there are many networks that provide and fund an array
of services and supports for people with mild to severe disabilities,
with mild to severe chronic illness, and who are young and old, male or
female, rich and poor, and ethnically diverse.

Currently, the LTSS system is fragmented in its approach to service
provision and oversight, budgetary priorities, and, most important,
issues related to quality of life from the perspective of the individual
requiring services and support. Since older adults and individuals with
disabilities receive services through separate networks, it is critical
to understand not only the demographics but also what consumers of LTSS
need in order to have a reasonable quality of life. This section of the
report provides a clear picture of the current federal experience in
providing these services to individuals who require support.

The working definition of LTSS introduced earlier in this report
includes a variety of services and supports essential to maintain
quality of life with maximum dignity and independence for individuals
who are elderly (age 65 and older) and individuals with disabilities.
Services and supports include housing, transportation, nutrition,
technology, personal assistance, and other social supports to maintain
independent living.

The federal legislative and regulatory involvement includes Medicaid,
Medicare, Medicaid Home- and Community-Based Waivers, the Department of
Housing and Urban Development (HUD) generic and elderly- and
disability-specific programs that underwrite housing and supportive
services, independent living services under the Rehabilitation Act,
programs funded under the Older Americans Act, nutrition programs, and
transportation programs relevant to either or both populations, as well
as the Community Services Block Grant and other social services programs
administered by HHS and relevant to the target population.

Each of the identified federal programs attempts to address
quality-of-life domains. Quality-of-life domains are defined in terms of
what a person requires to live life in a holistic manner and thus should
be viewed as integrative in nature. In developing the quality-of-life
domains, the research team considered what a person requiring assistance
with daily activities would need to remain independent and maintain the
ability to live in the least restrictive environment. These
quality-of-life domains include the following:

-   health care;

-   social support, personal assistance, and home care;

-   housing;

-   transportation;

-   nutrition;

-   technology; and

-   caregiver support.

The tables in Appendix 1.F provide an overview of specific federal
programs authorized in each of the seven defined quality-of-life
domains. For each program, information is provided on the legislative
authority, the responsible administrating agency, the targeted
eligibility group, and the scope of services that may be provided. In
addition, each program authority has been reviewed to identify (1) the
extent of consumer direction and control of service delivery and (2) the
direct consumer involvement in quality oversight, the approach to
federal-state partnerships, the promotion of systems change activities,
funding patterns over a three-year period, and any shift toward
universal design to meet the needs of individuals with disabilities
across a wide age span.

The review and analysis of 23 programs across the seven quality-of-life
domains reveals a patchwork approach that began in 1965 with the
establishment of the Medicaid and Medicare programs. Over the past 40
years, LTSS policy was added on as optional services to Medicaid policy.
States began to allow services and supports funded through Medicaid to
be provided in the home and community to eligible individuals.[^193]

Unlike the majority of programs profiled and analyzed in the other
quality-of-life domains, an ***entitlement*** program guarantees
eligible individuals a specified level of benefits. Congress must
appropriate funds sufficient to cover the costs associated with
entitlement benefits and services. The other profiled programs must
survive the annual appropriations process and the struggle for limited
dollars available for all domestic spending.

### Medicaid and Medicare

#### Medicaid Program

Medicaid represents a federally supported, state-administered,
means-tested entitlement program that is financed by the state and
Federal Government and is the nation's major public financing program
for providing health and long-term coverage to low-income people.[^194]
Medicaid LTC services are generally offered through the Medicaid state
plan and/or an HCBS waiver. The Medicaid state plan is the document that
states submit to the Federal Government for approval that describes the
eligibility groups and covered services. State plan services must be
available statewide to all Medicaid enrollees who qualify for the
service. Within federal guidelines, states set their own income and
asset eligibility criteria for Medicaid. Federal assistance is provided
to states for coverage of specific groups of people and benefits through
federal matching payments based on the state's per capita
income.[^195]^,^ [^196]^,^ [^197]

Within broad national guidelines established by federal statutes,
regulations, and policies, each state:

-   establishes its own eligibility standards;

-   determines the type, amount, duration, and scope of services;

-   sets the rate of payment for services; and

-   administers its own program.[^198]

While states generally have discretion in determining which groups their
Medicaid programs will cover, including the financial criteria for
eligibility, to be eligible for federal funds, states are required to
provide Medicaid coverage for certain individuals to include the
following:

-   low-income people who are over age 65;

-   blind or disabled;

-   members of families with dependent children;

-   low-income children and pregnant women;

-   recipients of SSI in most states;

-   certain Medicare beneficiaries; and

-   in many states, medically needy individuals.[^199]

As with the eligibility criteria, states have considerable flexibility
within their plans; however, there are mandatory requirements if federal
matching funds are to be received. A state's Medicaid program must offer
medical assistance for certain basic services to most categorically
needy populations such as "home health care for persons eligible for
skilled nursing services."[^200] States may also use federal matching
funds to provide optional services to include the following:

-   Diagnostic services

-   Clinic services

-   ICF/MRs

-   Prescribed drugs and prosthetic devices

-   Optometrist services and eyeglasses

-   Nursing facility services for children under age 21

-   Personal care

-   Transportation services

-   Rehabilitation and physical therapy services

-   HCBS[^201]

While Section 1902(a) (23) of the Social Security Act establishes the
right of Medicaid beneficiaries to choose their own provider,[^202]
consumer direction beyond this provision varies considerably.

Medicaid LTC expenditures in FY 2002 equaled \$82.1 billion,
approximately 34 percent of total Medicaid expenditures, which equaled
\$243.5 billion for 39 million enrollees. Medicaid LTC expenditures in
FY 2003 equaled \$83.8 billion, approximately 32 percent of total
Medicaid expenditures, which equaled \$259.6 billion for approximately
41.9 million enrollees. Financial assistance to states ranged from \$2.4
million to \$28.2 billion with an average of \$3.3 billion.[^203]^,^
[^204]

### Medicaid Home- and Community-Based Services Waiver Program

In addition to the Medicaid state plan, states have the option, upon
federal approval, to provide HCBS for Medicaid-eligible people who might
otherwise be institutionalized. HCBS may be offered as a supplement to,
or instead of, optional services available through the state plan.
Section 1915(c), which authorizes HCBS waivers, was added to Title XIX
of the Social Security Act by P.L. 97-35, the Omnibus Budget
Reconciliation Act of 1981, to encourage the provision of cost-effective
services to Medicaid recipients in noninstitutional settings. Before
P.L. 97-35, the Medicaid program provided little coverage for LTC
services in a noninstitutional setting, but offered full or partial
coverage for such care in an institution. In an effort to address these
concerns, Section 2176 of P.L. 97-35 was enacted, adding Section 1915(c)
to the Act.[^205]^,^ [^206]

The HCBS waiver program affords states the flexibility to develop and
implement creative alternatives to institutionalizing Medicaid-eligible
individuals. The program recognizes that many individuals at risk of
institutionalization can be cared for in their homes and communities,
preserving their independence and ties to family and friends, at a cost
no higher than that of institutional care.

Two primary criteria determine eligibility for 1915(c) waiver programs:
financial eligibility for Medicaid and functional eligibility for the
services provided, which is generally tied to eligibility for
institutional care. Recipients of waiver services must meet both
criteria.[^207]

Before the creation of the HCBS waiver program, financial eligibility
requirements for Medicaid were less stringent for institutional services
than for home-based services, which made it easier for people to enter
institutions than to receive care in the home. The waiver program helped
to correct this institutional bias by allowing states to set financial
eligibility limits for income that were as much as 300 percent of the
federal SSI benefits, generally the same level used for a nursing
facility. The functional eligibility criteria for waiver services vary
widely from state to state and vary by waiver target population within a
given state. Currently, there are 285 waivers nationwide serving 900,000
individuals with disabilities. The service mix includes case management,
personal care, environmental adaptations, habilitation, transportation,
assisted living services, and respite care.[^208]

Forty-nine states now have HCBS programs under §1915(c) of the Social
Security Act, the HCBS waiver program. (Arizona offers its HCBS program
under a §1115 waiver.) These and other programs allow states to target
specific population groups and limit the number of participants to
control costs. Individuals with developmental disabilities or mental
retardation constitute 38 percent of waiver program participants and 75
percent of expenditures. The elderly and people with physical
disabilities account for 62 percent of participants and 25 percent of
program expenditures.[^209]

+----------------------------------------------+-----------------------+
| Table 1.4. Medicaid HCBS Waivers by          |                       |
| Population[^210]                             |                       |
+----------------------------------------------+-----------------------+
| # Population                                 | #####                 |
|                                              | #### Number of States |
+----------------------------------------------+-----------------------+
| # Elderly/people with disabilities           | 49                    |
+----------------------------------------------+-----------------------+
| # M                                          | 46                    |
| ental retardation/developmental disabilities |                       |
+----------------------------------------------+-----------------------+
| # Technology-dependent children              | 17                    |
+----------------------------------------------+-----------------------+
| # HIV/AIDS                                   | 17                    |
+----------------------------------------------+-----------------------+
| # Brain injury                               | 15                    |
+----------------------------------------------+-----------------------+
| # Mental illness                             | 3                     |
+----------------------------------------------+-----------------------+

### Medicare Programs (Part A and Part B)

Medicare provides the foundation for our nation's financing of health
care for older Americans. Authorized by Congress in 1965 as Title XVIII
of the Social Security Act, Medicare is a federal health insurance
program for eligible elderly people or eligible people with
disabilities.[^211] Known in 1965 as Health Insurance for the Aged and
Disabled, Medicare generally covers individuals age 65 and over to
complement the retirement, survivors, and disability insurance benefits
under Title II of the Social Security Act.[^212]

Traditionally, Medicare has consisted of Part A, Hospital Insurance
(HI), which reimburses hospitals and other covered entities of the
program, and Part B, Supplementary Medical Insurance, which provides
supplemental medical insurance benefits. The Balanced Budget Act (BBA)
of 1997 (P.L. 105-33) established Part C, the Medicare+Choice program,
which expanded beneficiaries' options for participation in private
sector health care plans.[^213] Since 2004, the Supplementary Medical
Insurance component has included Medicare Part B and Part D. Part B pays
for physician, outpatient hospital, home health, and other services for
the aged and disabled; and Part D will initially provide access to
prescription drug discount cards and transitional assistance to
low-income beneficiaries. In 2006 and later, Part D will provide
subsidized access to drug insurance coverage on a voluntary basis for
all beneficiaries and premium and cost-sharing subsidies for low-income
enrollees.[^214]

#### Medicare Part A---Hospital Insurance Component

Individuals eligible for Medicare Part A include people who are age 65
or over and eligible for Social Security or Railroad retirement
benefits; people who have been eligible for Social Security or railroad
retirement disability benefits for at least 24 months; and/or workers
who are insured and have end-stage renal disease (ESRD), as well as
their spouses and children.

The Medicare HI component covers the following services:

-   inpatient hospital care---initial deductible required if admitted,
    in addition to copayments for stays beyond 60 days;

-   skilled nursing care---if the care follows within 30 days of a
    hospital stay of 3 days or more and is considered medically
    necessary, limited to 100 days;

-   home health agency---covers the first 100 visits only after a 3-day
    hospital stay or a skilled nursing facility stay. There is no
    copayment or deductible for home health under Part A; and

-   hospice care---provided to terminally ill patients with life
    expectancies of 6 months or less. No deductible to be paid by
    enrollee, but there is coinsurance for prescriptions and inpatient
    respite care.[^215]

Medicare Part A is financed mainly through a mandatory payroll tax at a
tax rate of 1.45 percent of earnings, paid by each employee, and matched
by the employer. People who are self-employed pay at a rate of 2.90
percent. According to the Centers for Medicare and Medicaid Services
(CMS), additional funding sources for Part A include the following:

-   a portion of the income taxes levied on Social Security benefits
    paid to high-income beneficiaries;

-   premiums from certain people who are not otherwise eligible and
    choose to enroll voluntarily;

-   reimbursements from the general fund of the U.S. Treasury for the
    cost of providing HI coverage to people of certain ages who retired
    when the program began and were unable to earn sufficient quarters
    of coverage;

-   interest earnings on its invested assets; and

-   other small miscellaneous income sources.[^216]

In 2003, according to CMS, 40.9 million people utilized Part A of
Medicare, including 34.9 million people age 65 and over and 6 million
individuals with disabilities. It is estimated that in 2004, there will
be 41.6 million enrollees (35.3 aged and 6.4 disabled), and by 2010,
46.3 million.[^217]^,^ [^218]

#### Medicare Part B---Supplementary Medical Insurance Component

Individuals age 65 and older, and all people entitled to coverage under
Part A or the HI component of Medicare, are eligible for enrollment in
Part B of Medicare, also known as Supplementary Medical Insurance, on a
voluntary basis by payment of a monthly premium.

Services provided under Medicare Part B must be deemed medically
necessary or prescribed as preventive by a physician. Services that are
not covered by Medicare include nursing care that is long term,
custodial care, dentures and dental care, eyeglasses, hearing aids, and
most prescription drugs. Services that are covered include the
following:

-   physicians' and surgeons' services (including some authorized
    services rendered by chiropractors, podiatrists, dentists, and
    optometrists);

-   emergency department or outpatient clinic, including same-day
    surgery and ambulance services;

-   home health not covered under Part A;

-   laboratory tests, X-rays, and other diagnostic radiology services,
    and certain preventive care screening tests;

-   ambulatory surgical center services in a Medicare-approved facility;

-   most physical and occupational therapy and speech pathology
    services;

-   comprehensive outpatient rehabilitation facility services, mental
    health care prescribed by physician;

-   radiation therapy, renal dialysis, and some organ and bone marrow
    transplants;

-   approved durable medical equipment for home use; and

-   drugs and biologicals that cannot be self-administered.[^219]

Financing for Part B of Medicare includes premium payments paid by
enrollees (\$66.60 in 2004) in combination with funds from the general
fund of the U.S. Treasury.[^220] According to CMS, beneficiary premiums
cover only 25 percent of expenditures, making the general fund from the
U.S. Treasury the largest source of funding for Medicare Part B.
Supplementary Medical Insurance benefits in 2003 served 38.5 million
(33.1 million aged and 5.3 million disabled). It was estimated that, in
2004, there would be 40 million enrollees, and by 2010, 43
million.[^221]

### Medicaid and Medicare

Combined, the federal-state Medicaid and federal Medicare programs
provide states with more than 50 percent of their LTSS funding.
Originally, the programs had different goals, different target
audiences, and different funding mechanisms with no provision for home-
and community-based LTSS. As we have read in previous sections of this
report, just understanding what the different eligibility criteria for
services and supports are for the various populations requesting them is
pretty complex. When we look at what actually is mandated under Medicaid
and Medicare, we realize that today's LTSS programs are add-ons and are
funded primarily (outside of institutional care) as optional services.
The rising need for LTSS caused by the changing demographics over the
past decade has not been acknowledged by Congress as an issue that
needed to be addressed. States have been challenged to find creative
ways to provide services and supports through the use of federal
waivers. In a way, the granting of waiver authority was a little like
giving states a credit card to buy LTSS that were not yet budgeted for,
either on the state or federal level.

States are at a crossroads and cannot continue to meet the LTSS needs of
their citizens without federal assistance. The dually eligible
population---the most fragile of all the populations and the most in
need of services and supports---is consuming an inordinate amount of
Medicare and Medicaid dollars. In a December 2004 letter to Congress and
the Administration, the NGA wrote that it was "unacceptable" that
Medicaid costs were growing at a rate of 12 percent per year and
averaging 22 percent of state budgets. The letter cited two main causes
of this growth: a 33 percent increase in caseloads over the past four
years and LTC costs. Medicaid currently finances 70 percent of all care
for nursing home residents.[^222]

It should be no surprise to policymakers that the baby boomers are
getting older and will have an increasing need for services and supports
to remain independent. And it is old news that people with disabilities
have always needed access to services and supports to compensate for
their disabilities so they can live fully engaged lives.

### Other Quality-of-Life Domains

Out of the quality-of-life domains identified social support, personal
assistance, and home care are possibly the most important for
individuals requiring LTSS. Unfortunately, these are also the most
fragmented domains and perhaps the most underfunded, depending on how
one measures and defines them relative to specific programs. Independent
Living State Grants, Centers for Independent Living, Special Programs
for the Aging, the Senior Companion Program, the Medicaid HCBS waiver
program, and the Social Services Block Grant are the six related federal
programs associated with this quality-of-life domain.

Appendix 1.F, table 2 highlights the fact that no fewer than five
federal agencies are responsible for the programs that attempt to
mediate these important domains. Additionally, eligibility criteria vary
tremendously by age, disability, and income. Only two of the programs
are designed to support both frail elders and individuals with
disabilities.

The degree of consumer direction is difficult to identify because the
majority of these federally funded programs have delegated decision
making to the local level. The variance relative to the scope of
services is just as difficult to measure because of the same issues but
does vary from support of the operation of Independent Living Centers to
implementation and coordination of social services and home health
through Medicaid state plan options and waivers.

Eligibility criteria vary for each program but are most variable with
respect to the Medicaid and HCBS waiver programs that exist in those
states. The states have discretion with respect to eligibility and the
services that are provided.

### Housing

Of the quality-of-life domains analyzed, none is more underfunded than
affordable and accessible housing. According to HUD's latest Worst Case
Housing Needs Report, people with disabilities make up at least 25
percent[^223] (estimated by HUD as 1.1 million to 1.4 million people) of
the households with worst-case housing needs in the United States.[^224]
Some of these individuals are actually homeless and without housing of
any kind. An Urban Institute study on homelessness indicates that of the
800,000 people who are homeless on any given night, 46 percent of adults
have some type of disability.[^225]

HUD and the U.S. Department of Agriculture (USDA) are the two federal
agencies identified that administer federal-related programs that
address the housing needs of the elderly and adults with disabilities.
Nine programs are administered by HUD and one by USDA. Appendix 1.F,
table 4 highlights the relevant federal housing programs.

Across the nation, the reconfigurations relative to accessible and
affordable housing initiatives that are under way at the state level, in
general, include two primary efforts: (1) developing more state and
local programs that help keep people who are disabled, frail, or
cognitively impaired at home; and (2) community-based residential
alternatives for people who are elderly and disabled who can no longer
manage at home but do not need the 24-hour subacute care/skilled nursing
environment provided in nursing homes. To make these institutional
alternatives available to people with low incomes, states use a variety
of state- and Medicaid-funded approaches to deliver home-based and
residential services.

Nationally, on average, a person with a disability receiving SSI
benefits would be priced out of the private housing market because he or
she would need to pay over 105 percent of the monthly SSI check to rent
a modest one-bedroom unit at the published HUD Fair Market Rent. Without
housing assistance, through some type of government-funded direct
support to the individual or subsidized housing to a developer,
low-income individuals who are aging and/or disabled will not find an
affordable place to live.[^226] Without some type of housing
assistance---such as government-funded subsidized housing---low-income
people with disabilities and frail elders are unable to afford decent
and safe housing of their choice in the community.

In the past 30 years, states have continued to evolve their approach to
housing and related services for people with disabilities. In general,
states have moved away from an institutional model of segregated
facilities that tie together housing and service needs to a variety of
smaller community-based living options. To varying degrees, these
community living alternatives are intended to provide more choices and
independence for the targeted populations. With the authorization by
Congress in 1981 of the Medicaid HCBS waiver, there have been new
options for states to consider in supporting community integration.
However, despite these increases, Medicaid payment policy does not cover
housing or meal costs in a home- or community-based setting, although
Medicaid does factor these costs into payments for nursing homes. In
recent years, people with disabilities and individuals who are aging
have been consistent in articulating essential principles to frame
housing choices and related services to meet their needs. People with
disabilities have pushed to separate housing choices that are affordable
and accessible from the provision of LTSS.

Federal and state housing programs can target households with incomes up
to 50--60 percent of the median income, or even higher in some cases.
Although government housing agencies are producing new "affordable"
housing every year, in many instances, this new supply of housing is not
affordable to people with SSI incomes. This is true because most federal
and state programs help pay for the one-time cost of developing the
housing (e.g., the cost of acquisition/rehabilitation or new
construction of housing) but do not fund the ongoing cost of operating
the housing (e.g., insurance, maintenance/repairs, reserves, property
management costs, utilities, etc.).

To make "affordable housing" truly affordable to people with
disabilities and frail elders, an ongoing rent subsidy or operating
subsidy is needed to ensure that all of the operating costs can be
covered.

Of the quality-of-life domains of the long-term support system
identified, housing appears to be the least fragmented; however, access
remains a problem. While most of the federal-related programs are funded
by HUD, they are underfunded, the eligibility criteria are restrictive,
and consumer choice and control are limited. The trend toward shifting
institutional care to home- and community-based support and services
will not be realized if housing is not considered a priority area
relative to LTSS for people with disabilities.

### Transportation

Appendix 1.F, table 5 highlights the important transportation programs.
The ability to access transportation is critical to living a full life.
Having access to transportation is one of the quality-of-life domains
that enable individuals requiring LTSS to maintain their independence
and dignity; that is, for many it represents the vehicle to
participation. For instance, transportation is the key to connecting
individuals to the services and supports they need, such as visiting
family and friends and participating in community activities (social,
recreation, and community participation); taking care of their health
needs, such as doctor and hospital visits, as well as the ability to
purchase needed medical supplies, including prescriptions; securing and
maintaining employment; advancing their educational goals and careers
(attending school and educational advancement institutions); and
providing for their nutritional and routine needs, such as the ability
to access shopping centers.

The Department of Transportation funds programs that focus on the
specific transportation needs of transportation-disadvantaged
populations. The programs include the Job Access and Reverse Commute
Grants, which are aimed at connecting low-income individuals to
employment and support services; the Capital Assistance Program, which
provides financial assistance to nonprofit organizations for meeting the
transportation needs of elderly people and people with disabilities; and
the United We Ride State Coordination Grants, which assist states that
want to strengthen or jump-start efforts to coordinate human service
transportation.

According to a recent GAO report on the transportation-disadvantaged
populations,[^227] there are 62 federal programs that can fund
transportation services for certain transportation-disadvantaged
populations, which include some elderly people, people with
disabilities, or low-income people who have transportation needs, such
as the ability to provide their own transportation, or who have
difficulty accessing conventional public transportation. Most of these
programs are administered by four federal agencies: the Departments of
Transportation, HHS, Labor, and Education. Programs that can fund
incidental transportation services include health and medical programs
or job-training programs. For example, the Medicaid program
(administered by HHS) spent an estimated \$976.2 million on
transportation in FY 2001. The Community Transportation Association of
America (CTAA)[^228] identified several programs that provide
transportation for the target audience, including Workforce Investment
Act programs (administered by the Department of Labor), and Vocational
Rehabilitation Grants (administered by the Department of
Education).[^229]

Although it appears that numerous federal programs exist to assist the
transportation-disadvantaged population, research conducted by the GAO
relative to these programs concluded that fragmentation and lack of
coordination within supporting agencies continue to be a challenge;
therefore, there is a need to coordinate the transportation services
offered by these federal programs to provide "improved customer service
and substantial cost savings."[^230] Efforts toward coordinating
transportation services were identified and addressed in 1986 through
the creation of the Coordinating Council on Human Services
Transportation by the Department of Transportation and HHS, which was
renamed the Coordinating Council on Access and Mobility in 1998. In
January 2004, the Departments of Labor and Education joined the council.
The council was charged with coordinating and addressing issues of
transportation access and mobility in their respective programs.[^231]

One significant effort of this council was the launch of the United We
Ride initiative in December 2003. The United We Ride program represents
a five-part transportation coordination initiative developed by the four
federal agencies.[^232] This initiative moves to improve federal
leadership and commitment "by establishing coordination as a priority
and providing some dedicated financial support and proactive technical
assistance."[^233]

The members of this council and its mandate were further enhanced
through Executive Order 13330 on Human Service Transportation
Coordination, issued by President Bush on February 24, 2004, "to enhance
access to transportation to improve mobility, employment opportunities,
and access to community services for persons who are
transportation-disadvantaged." The order established the Interagency
Transportation Coordinating Council on Access and Mobility within the
Department of Transportation, which expands the members of the 1998
council. The membership of this council now includes secretaries from
the Departments of "Transportation, Health and Human Services,
Education, Labor, Veterans Affairs, Agriculture, Housing and Urban
Development, and the Interior, the Attorney General and the Commissioner
of Social Security and such other federal officials as the Chairperson
of the Council may designate."[^234] According to the language of the
Executive Order, it was issued based on the following findings and
principles:

\(a\) A strong America depends on citizens who are productive and who
actively participate in the life of their communities.

\(b\) Transportation plays a critical role in providing access to
employment, medical and health care, education, and other community
services and amenities. The importance of this role is underscored by
the variety of transportation programs that have been created in
conjunction with health and human service programs, and by the
significant Federal investment in accessible public transportation
systems throughout the Nation.

\(c\) These transportation resources, however, are often difficult for
citizens to understand and access, and are more costly than necessary
due to inconsistent and unnecessary Federal and State program rules and
restrictions.

\(d\) A broad range of Federal program funding allows for the purchase
or provision of transportation services and resources for persons who
are transportation-disadvantaged. Yet, in too many communities, these
services and resources are fragmented, unused, or altogether
unavailable.

\(e\) Federally assisted community transportation services should be
seamless, comprehensive, and accessible to those who rely on them for
their lives and livelihoods. For persons with mobility limitations
related to advanced age, persons with disabilities, and persons
struggling for self-sufficiency, transportation within and between our
communities should be as available and affordable as possible.

\(f\) The development, implementation, and maintenance of responsive,
comprehensive, coordinated community transportation systems is essential
for persons with disabilities, persons with low incomes, and older
adults who rely on such transportation to fully participate in their
communities.[^235]

### Nutrition

Nutrition, like housing and transportation, represents another essential
LTSS that the elderly and people with disabilities require to maintain
quality of life and to help them maintain independent living. At the
beginning of the 20th century, life expectancy was less than 50
years---at that time individuals did not face things such as chronic
long-term illness or the need for special care that can come from aging
into one's 70s, 80s, and even 90s. However, by 1950, with the advent of
provisions such as better nutrition, clean water, pasteurized food, and
refrigeration, life expectancy had increased to 63 years.[^236]

According to a USDA report to Congress,[^237] the investment in
nutrition assistance in the United States has been a critical tool in
fighting undernutrition and related health problems. It is well
established that good nutrition is fundamental to proper growth,
development, health, and performance. Diet is widely recognized as a
central component of health promotion and disease prevention. Scientific
evidence increasingly supports the fact that good nutrition is essential
to health, self-sufficiency, and quality of life.[^238]^,^ [^239]

People with disabilities and special health care needs frequently have
nutrition problems, including growth alterations, metabolic disorders,
poor feeding skills, medication-nutrient interactions, and partial or
total dependence on enteral or parenteral nutrition. Poor health habits,
limited access to services, and long-term use of multiple medications
are considered risk factors for additional health problems.[^240]

There are three main federal-related nutrition programs that address the
nutritional needs of the elderly and individuals with disabilities: the
Elderly Nutrition Program (HHS), and the Senior Farmers' Market
Nutrition Program and Food Stamps Program (Department of Agriculture).

The relationships among appropriate nutrition services, positive health
outcomes, and reduced health care costs for older adults and individuals
with disabilities continue to be established.[^241]^,^ [^242] Good
nutritional status and personal well-being benefit both the individual
and society: Health is improved, dependence is decreased,
hospitalization stays and time required to recuperate from illness are
reduced, and utilization of health care resources is contained.[^243]^,^
[^244]^,^ [^245] While food is sustenance required by every living being
to survive, access to proper nutrition remains a substantial problem for
the elderly and people with disabilities. Many of these individuals have
low incomes and do not receive enough in retirement or disability
benefits to meet all of their expenses and to purchase healthy and
nutritious meals.

### Assistive Technology

LTC encompasses a broad range of services and supports that the elderly
and individuals with disabilities require to maintain a long-term
quality of life. Assistive technology (AT), like health care and social
support services, can play an important part in helping individuals to
maintain their independence by improving access and coordination. AT
represents any item, piece of equipment, or product system---whether
acquired commercially off the shelf, modified, or customized---that is
used to increase, maintain, or improve the functional capabilities of
individuals with disabilities.[^246]

AT can be as simple as a walker to make moving around easier or an
amplification device to make sounds easier to hear (for example, talking
on the telephone or watching television). It could also include a
magnifying glass that helps someone who has poor vision read the
newspaper, or a small motor scooter that makes it possible to travel
over distances that are too far to walk. In short, anything that helps
the elderly and people with disabilities continue to participate in
daily activities is considered AT.

AT services also include things like home modification, such as
architectural changes and permanent installation of equipment.
Architectural changes can include adding ramps and other structures to
enter, move about in, or exit the home; widening doorways; retrofitting
a bathroom; and lowering countertops and making other modifications to
an eating area or kitchen.

Other examples of AT include large-screen computer monitors and remote
control devices to operate lamps, radios, and other appliances. AT
devices can assist most people---of all ages---to be more functional and
independent; they can make the difference between dependence and
independence.[^247]

The Assistive Technology Act (ATA) of 1998, reauthorized with amendments
in 2004, is a federal program that acknowledges and addresses the
benefits of providing AT to enable individuals with disabilities to
participate in society.

The ATA has three main purposes: to sustain and strengthen the capacity
of states to address the AT needs of people with disabilities; to
support investment in technology across federal agencies; and to support
microloan programs for the purchase of AT devices or services.[^248]

For the elderly and individuals with disabilities, AT may make the
difference between being able to live independently and having to get
long-term nursing or home health care. AT for both target groups is
critical to the ability to perform simple ADLs, such as bathing and
going to the bathroom, as well as more complex tasks, such as using a
computer.

According to the executive summary from the NCD report *Federal Policy
Barriers to Assistive Technology*,[^249] individuals of all ages can
benefit from AT; however, the benefit for individuals with disabilities
"changes the most ordinary of daily activities from impossible to
possible. In an ideal climate, no person with a disability should be
denied the opportunity to obtain assistive technology and transfer its
inherent potential into viable, life-fulfilling endeavors." Furthermore,
in its concluding remarks, the NCD report states that "it is clear that
the current patchwork of federal policies has barriers and gaps, leaving
many people with disabilities without the benefits of assistive
technology."

Currently, no single private insurance plan or public program will pay
for all types of AT; however, Medicare will cover up to a percentage of
the cost of AT for items that are traditionally considered "medical
and/or medically needy." However, the need for LTC often extends well
beyond the "medically needy" period; therefore, these LTSS would not be
covered. Some state-run Medicaid programs may cover AT, and seniors
eligible to receive veterans benefits may be able to purchase needed AT
through this program.[^250]

In 2000, money was appropriated for Title III of the Assistive
Technology Act of 1998 (P.L. 105-394) authorizing the Alternative
Financing Program (AFP), which is designed to assist states in
establishing or maintaining alternative financing projects to increase
access to AT for individuals with disabilities. This program allows
individuals with disabilities and their family members to access a
funding alternative to public assistance programs to purchase AT devices
and services.[^251]

Existing funding sources for the acquisition of AT devices and services
do not meet the needs of all individuals with disabilities of all ages.
These individuals may encounter barriers to obtaining AT devices because
they either do not quality for services from these systems or are unable
to obtain payment for their particular piece of equipment. Some states
have attempted to reduce or eliminate these barriers through the
establishment of an AFP. Unfortunately, these programs are underfunded
and not every state has one. According to the Rehabilitation Engineering
and Assistive Technology Society of North America (RESNA) Alternative
Financing Technical Assistance Project, FY 2003 grantees only include 23
states and three territories.[^252]

### Caregiver Support

While some federal and state programs exist to provide LTSS to the
elderly and individuals with disabilities, most long-term support is
provided in the United States by family members or other informal
caregivers. These caregivers include spouses, adult children, and other
relatives or friends.

The HHS report *Delivering on the Promise*[^253] states that recent
studies confirm that the majority of direct care (about 64 percent) to
people with disabilities is provided by families, friends, and
neighbors. This same report cites that 95 percent of the elderly who
need assistance have family members involved in their care. This report
concurs with other studies that state that these caregivers receive
little, if any, direct assistance and often "face tremendous financial
and emotional pressures." Finally, the inadequacy of caregiver supports,
such as respite care, "poses significant challenges to community
integration for individuals with disabilities and their families."
Evidence does suggest that the provision of supportive services "can
diminish caregiver burden, permit caregivers to remain in the workforce,
and enable people with disabilities \[this can also apply to the
elderly\] to remain in community settings."

It is clear, then, that because caregivers play such an important role,
services that sustain a caregiver's role and maintain his or her
emotional and physical health are an important component of any HCBS
system.[^254] Respite care is one program option that may provide the
support needs that caregivers require. Respite care represents
"short-term supervision, assistance, and care provided due to the
temporary absence or need for relief of recipient's primary caregivers.
This may include overnight, in-home or out-of-home services."[^255]

The National Family Caregiver Support Program (NFCSP), the
federal-related program that addresses the quality of life domain of
caregiver support, recognizes the role of families in providing LTSS.

The NFCSP calls for all states to work in partnership with Area Agencies
on Aging, as well as local community service providers, to provide the
following five basic services for family caregivers:

-   information to caregivers about available services;

-   assistance to caregivers in gaining access to supportive services;

-   individual counseling, organization of support groups, and
    caregiving training to assist caregivers in making decisions and
    solving problems related to their caregiver roles;

-   respite care to enable caregivers to be temporarily relieved from
    their caregiver responsibilities; and

-   supplemental services on a limited basis, to complement the care
    provided by caregivers.[^256]

Respite care is also an allowable service under the HCBS waivers and is
included in a majority of state waivers to targeted eligible
individuals.[^257] Policymakers have traditionally designed Medicaid
benefits based upon specific eligibility criteria defining needs of
individuals. Both in-home and out-of-home respite services introduce
additional complexities from a policy perspective as they require an
assessment of family need.

### Conclusion

Changing demands and expectations of individuals with disabilities and
families continue to pressure states to reevaluate their approach to
deliver consumer-responsive services and supports. Regardless of the
identified quality-of-life domain and analysis of the current menu of
federally supported services, there was a lack of choices for the
targeted audience to effectively respond to growing demand. There is a
level of complexity that leaves consumers and professionals bewildered
by the rules and procedures to determine eligibility for specific
supports and services. States are developing client assessment
instruments to assess a person's ability to perform ADLs (eating,
bathing, dressing, mobility, and toileting); cognitive and emotional
status; social, housing, and environmental circumstances; and nutrition
and family/friend support networks. Several states also use this
instrument to determine qualifications for (and to help a client choose
from) a menu of program options, including Medicaid waiver and state
plan services, state-funded services, and Social Services Block Grant
programs.[^258]

States also reported efforts to make their delivery systems more
efficient and user friendly by establishing single-entry-point systems
or no-wrong-door systems to help eliminate the confusion consumers have
about choices for LTSS.[^259]

Thirty-one states and the District of Columbia have implemented
single-entry-point systems, which combine information and referral,
client assessment, eligibility determination, care plan development,
authorization, and quality assurance in one entity at the local level.
Some of these systems also coordinate with the client's physician or
hospital discharge planner to facilitate movement among services and
settings.[^260]

These new state efforts build upon a no-wrong-door philosophy.
Regardless of which agency one may access to seek assistance, that
agency is prepared to provide information and connect the individual to
needed services and supports. Despite these efforts at systems reform,
at a community level, there remains great confusion among consumers and
government agencies about who should supply which services, whether some
services even exist, and who may be eligible. As one commenter explained
before the Federal Commission on Affordable Housing and Health Needs for
Seniors in the 21st Century, "The current 'crazy-quilt' tapestry of
services and shelter options make it difficult to fully grasp their
complexities, let alone try to access them."[^261]

## Part VIII Pushing Tugboats

An overview of promising practices that are moving the current system
toward reform.

Many state demonstration projects for LTC, which are funded in part by
federal and private foundation funds, are responsible for the current
innovations occurring in states for people with disabilities and senior
Americans. Initiatives such as the Real Choice Systems Change (RCSC)
grants from CMS are facilitating demonstrations and compliance with
*Olmstead*, greater alliance among the aging and disability communities,
and a "lifespan" approach to policy change. Cash and Counseling and
Independence Plus consumer-directed care and caregiving programs that
allow greater autonomy for people with disabilities (of any age) to
direct the hire and choice of personal caregivers, single-point-of-entry
programs to create more effective access to services, and affordable
assisted living and housing options for low-income seniors (such as NCB
Development Corporation's and the Robert Wood Johnson Foundation's
Coming Home Program) are all pushing forward the possibilities of new
thinking.[^262]

As the second Administration of President George W. Bush begins to
unveil its priorities, multiple demonstration initiatives launched in
the first term continue to support state efforts to expand consumer
choices to live independently at home and in community settings
coordinated with needed services. Appendix 1.C highlights four
initiatives that are the "tugboats" pushing forward state changes in
service delivery, financing, administration, consumer direction, and
quality oversight.

### Cash and Counseling Demonstrations

The Cash and Counseling Demonstrations are offering states the
opportunity to experiment and innovate with cost-effective choices
between institutional and community-based systems.

The Cash and Counseling Demonstrations jointly funded by the AOA and the
Office of Planning and Evaluation at HHS builds on an initial
partnership that began in 1996 with the Robert Wood Johnson Foundation
to pilot and evaluate consumer-directed models for long-term supports in
three states: Arkansas, Florida, and New Jersey (see Appendix 1.D).
Under these demonstrations, each state provided beneficiaries with
disabilities with a flexible monthly allowance to pay for personal care
services according to a budget developed by the individual and approved
by the state. The individual hired, supervised, and managed the services
provided by direct care workers that include family members. Appendix
1.D describes the primary features of each state's demonstrations.

Based on a comparison with a control group of individuals who received
services through a traditional agency-based provider, participants in
the demonstration (1) were more satisfied with the services they
received; (2) reported a higher quality of life; (3) had fewer unmet
needs for personal care; (4) received more paid care (especially adults
under age 65); and (5) did not have more adverse events or health
problems.[^263]

Based on preliminary positive findings, HHS awarded on a competitive
basis new Cash and Counseling Demonstration projects in 11 states in
October 2004.[^264]

The Cash and Counseling Demonstrations are not without criticism from
some members of the disability community. In testimony before the House
Energy and Commerce Committee, Bob Williams, co-director of Advancing
Independence---a forum that promotes responsible changes to Medicare and
Medicaid needed to enhance the health and independence of Americans with
disabilities of all ages---articulated a number of specific concerns,
including the following:

-   The notion that self-directed individual budgets is an approach that
    everyone can or wants to use: It might not work well for someone
    without a natural support network to turn to that can help manage
    the relationships with service providers and resulting costs.

-   The methods for calculating individual budgets must be fair and
    reflect changing levels of need over time.

-   The need for consumer education and individual assistance in
    assessment of needs, the creation and management of an individual
    budget, and the management of service provider relationships.[^265]

### Establishment of Aging and Disability Resource Centers

During the past two years, FY 2003 and FY 2004, CMS teamed up with the
AOA to create one-stop Aging and Disability Resource Centers (ADRCs) to
assist individuals and families learn about and access LTSS. CMS and AOA
funded on a competitive basis projects in 23 states to design, pilot,
and evaluate a more coordinated approach to LTSS through a single point
of entry. The pilot projects are now building on the earlier experience
that began in the late 1990s in Wisconsin. The centers in Wisconsin
serve as clearinghouses for information about LTC and LTSS options and
eligibility. As an information clearinghouse, the ADRC offers advice and
assistance to individuals with disabilities across the age spectrum as
well as to physicians, hospital discharge planners, and other
professionals who work with older people or people with disabilities.
Services offered through the single entry point can be grouped into six
major areas:

-   **Information and Assistance**. Provide information to the general
    public about services, resources, and programs in areas such as
    disability and LTC-related services and living arrangements, health
    and behavioral health, adult protective services, employment and
    training for people with disabilities, home maintenance, nutrition,
    and family care. Resource center staff will provide help to connect
    people with those services and to also apply for SSI, Food Stamps,
    and Medicaid as needed.

-   **LTC Options Counseling**. Offer consultation and advice about the
    options available to meet an individual's LTC needs. This
    consultation will include discussion of the factors to consider when
    making LTC decisions. Resource centers will offer pre-admission
    consultation to all individuals with LTC needs entering nursing
    facilities, community-based residential facilities, adult family
    homes, and residential care apartment complexes to provide objective
    information about the cost-effective options available to them. This
    service is also available to other people with LTC needs who request
    it.

-   **Benefits Counseling**. Provide accurate and current information on
    private and government benefits and programs. This includes
    assisting individuals when they run into problems with Medicare,
    Social Security, or other benefits.

-   **Emergency Response**. The resource center will ensure that people
    are connected with someone who will respond to urgent situations
    that might put someone at risk, such as a sudden loss of a
    caregiver.

-   **Prevention and Early Intervention.** Promote effective prevention
    efforts to keep people healthy and independent. In collaboration
    with public and private health and social service partners in the
    community, the resource center will offer both information and
    intervention activities that focus on reducing the risk of
    disabilities. This may include a program to review medications or
    nutrition, home safety review to prevent falls, or appropriate
    fitness programs for older people or people with disabilities.

-   **Access to the Family Care Benefit.** For people who request it,
    resource centers will administer the LTC Functional Screen to assess
    the individual's level of need for services and eligibility for the
    Family Care benefit. The Wisconsin Family Care benefit combines HCBS
    waiver funds with non-state waiver-only funds. Once the individual's
    level of need is determined, the resource center will provide advice
    about the options available to him or her: to enroll in Family Care
    or a different case management system (if available), to stay in the
    Medicaid fee-for-service system (if eligible), or to privately pay
    for services.[^266]

It is too early to determine the impact of the ADRC demonstrations on
the target populations. AOA and CMS will evaluate whether the Resource
Centers increase informed decision making and consumer satisfaction with
access to needed LTSS in the most integrated setting. Over a three-year
period, each of the pilot states is expected to have at least one
operating center that demonstrates improvements in the state's ability
to manage public resources, monitor program quality and costs, and
improve assessment of need and effective coordination of services to
limit unnecessary use of high-cost options, including nursing
facilities.

### Real Choice Systems Change Grants

As part of the President's New Freedom Initiative (NFI), funds
competitively awarded to states during the past four years are intended
to be catalysts for systems change to enable people of all ages with a
disability to (1) live in the most integrated community setting suited
to their needs; (2) have meaningful choices about their living
arrangements; and (3) exercise more control over the services they
receive.[^267] The four rounds of competition have challenged states to
focus on specific areas of intervention to help rebalance funding toward
expanded community choices, improve consumer participation and
direction, monitor quality, and build better links between housing and
services. CMS has awarded more than 200 grants and over \$200 million,
with the typical grant period extending for three years and the majority
of states having at least one award.[^268] Findings from the Second
Annual Report on Grantee Activities include relevant activities that are
laying the foundation for LTSS reform. In the area of consumer
direction, grantees in 41 states are incorporating principles of
consumer direction in service delivery through changes in administrative
rules and regulations, and training and education for consumers,
families, and providers. Grantees in 22 states have successfully
transitioned a total of 1,214 individuals with disabilities from
institutional to community settings. The state budgeting and
reimbursement grantees in 38 states are developing changes to their
long-term support systems that adapt individualized budgeting,
strategies to allow dollars to follow a person from institutional
settings to the community, and new payment rates and reimbursement
methods. The workforce recruitment and quality grantees in 39 states
have initiatives to increase wages and benefits, have training to
improve skills and development of career ladders, and are testing new
recruitment strategies. The quality assurance grantees in 25 states are
implementing initiatives to redefine quality measures, adding a consumer
focus to monitoring activities, and developing data systems for quality
monitoring.[^269] Appendix 1.E provides an overview of all 50 states
with initiatives to improve access to LTSS.[^270]

The current findings of the Research Triangle Institute Report for CMS
recognize the limitations of the data analyzed, which primarily comes
from grantee self-reporting. As grantees continue to design and
implement multiple systems change strategies made possible by federal
RCSC funding during the next four years, new understanding and knowledge
will become available to shape future decisions about the structure and
design of consumer-responsive LTSS. An additional new round of
competitive funding for states in the summer of 2005 will invite states
to propose further activities to support comprehensive systems reform.

### Independence Plus Initiative

Independence Plus was first announced in May 2002 to encourage
individual or family direction of supports and services that keep people
in the community through the development and direction of individualized
budgets.[^271] In August 2004, California became the sixth state
approved by CMS under the Independence Plus program. It is expected to
benefit more than 60,000 Californians with disabilities who will be
allowed to direct their own personal care services rather than have
their care designed by a home health agency.[^272] Under the
Independence Plus waiver, consumers and families will be involved in
planning all aspects of service delivery of personal assistance
services, including but not limited to the hiring, direction, and
appraisal of service providers. According to Mark McLellan,
administrator of CMS, "Allowing persons with disabilities and their
families to engage in self-direction is a high priority for the Bush
Administration and my agency."[^273]

The Independence Plus waiver approach to self-direction is a part of the
Bush Administration's efforts to expand funding resources for LTSS at
home and in community settings. State and federal expenditures have
increased under HCBS waivers from \$13.9 billion in FY 2001 to an
estimated \$20.7 billion in FY 2004. Between 2001 and 2004, a total of
\$68.7 billion will be spent to support HCBS waivers.[^274]

Each of the eight states with approved Independence Plus waivers has
targeted a specific group of eligible individuals with disabilities,
such as adults with physical disabilities, individuals with a
developmental disability, or individuals with disabilities who are over
age 65. The scope of services offered also varies in scope, from
personal assistance services in California to personal care services,
respite services, and other services needed to maintain independent
lives in South Carolina. All participating states will require
individualized budgets directed with the assistance of a service
coordinator and a fiscal intermediary to help with financial management
services.[^275] It is too early to evaluate the impact of these design
elements on the targeted beneficiaries or the larger state systems.

### Conclusion

The combination of these four initiatives provides both financial and
philosophical support to a long-term service system that needs to be
reframed and transformed with active participation of people with
disabilities and their families. In an August 2004 letter to state
Medicaid directors, CMS reaffirmed its support for states in the
implementation of the principles of Money Follows the Person. CMS
explains that the term as follows:

Money Follows the Person refers to a system of flexible financing for
long-term services and supports that enables available funds to move
with the individual to the most appropriate and preferred setting as the
individual's needs and preferences change. It is a market-based approach
that gives individuals more choice over the location and type of
services they receive. A system in which Money Follows the Person is
also one that can incorporate the philosophy or self-direction and
individual control in state policies and programs.[^276]

CMS, through these four important initiatives and letters of policy
guidance, is pulling the ship forward to allow people to have expanded
choice and control of the services and supports they need.

## Part IX Harnessing Favorable Winds

An overview of selected, important legislative and executive branch
activities.

### Americans with Disabilities Act

The new paradigm of disability maintains that disability is an
"interaction between characteristics (e.g., conditions or impairments,
functional status or personal and social qualities) of an individual and
characteristics of the natural, built, cultural, and social
environments."[^277] Favorable winds from the legislative, judicial, and
executive branches of the Federal Government in the past 15 years have
embraced this new paradigm.

The passage of ADA in 1990[^278] and of its predecessor, the
Rehabilitation Act of 1973,[^279] reflect a basic shift in public
understanding of disability and its meaning in the broader society. Both
laws have embraced community integration as an essential core concept,
although ADA changed the basic terminology of the Rehabilitation Act and
broadened the goal of community integration of people with disabilities
to extend to all facets of life, not merely federally assisted
programs.[^280]

Although much of the public attention and research inquiry regarding ADA
has attempted to evaluate the impact of ADA civil rights protections
regarding business practices and employment discrimination,[^281] the
purpose of ADA is far broader. For individuals with disabilities, the
ADA preamble states the following:

The nation's proper goals regarding individuals with disabilities are to
assure equality of opportunity, full participation, independent living,
and economic self-sufficiency.[^282]

Title II of ADA, which applies to publicly operated and funded programs
and services, provides the framework for community integration and
movement away from separate and segregated services. "No qualified
individual with a disability shall by reason of such disability, be
excluded from participation in or denied the benefits of the services,
programs, or activities of a public entity, or be the subject of
discrimination by any such entity."[^283] The Department of Justice
regulations implementing this provision require that "a public entity
shall administer services, programs, and activities in the most
integrated setting appropriate to the needs of qualified individuals
with disabilities."[^284]

According to the preamble to these implementing regulations, the "most
integrated setting" means "a setting that enables individuals with
disabilities to interact with non-disabled persons to the fullest extent
possible."[^285]

### The Olmstead Decision

Nine years later, the favorable winds (or new momentum) for redirecting
the ship (or current system of LTC entitlements and other federal
funding sources) that could embrace community inclusion and integration
principles resulted from the U.S. Supreme Court decision in *Olmstead v.
L.C.* and the interpretation of Title II of ADA. The *Olmstead* decision
affirmed the right of people with disabilities to choose how to live
their lives and have greater control over their daily activities in the
most integrated settings.[^286] The Supreme Court made it clear that it
is a violation of ADA for states to discriminate against people with
disabilities by providing services in institutions when the individual
could be served more appropriately in a community-based setting.[^287]
The Supreme Court stated that "Unjustified isolation . . . is properly
regarded as discrimination based on disability."[^288] It observed that
(1) "institutional placement of persons who can handle and benefit from
community settings perpetuates unwarranted assumptions that persons so
isolated are incapable or unworthy of participating in community life,"
and (2) "confinement in an institution severely diminishes the everyday
life activities of individuals, including family relations, social
contacts, work options, economic independence, educational advancement,
and cultural enrichment."

Under ADA, states are obliged to:

make reasonable modifications in policies, practices, or procedures when
the modifications are necessary to avoid discrimination on the basis of
disability, unless the public entity can demonstrate that making the
modifications would fundamentally alter the nature of the service,
program or activity.[^289]

The Supreme Court indicated that the test as to whether a modification
entails "fundamental alteration" of a program takes into account three
factors: the cost of providing services to the individual in the most
integrated setting appropriate; the resources available to the state;
and how the provision of services affects the ability of the state to
meet the needs of others with disabilities.

### New Freedom Initiative

Favorable winds picked up greater force with the February 2001
announcement by President George W. Bush of a comprehensive set of
proposals called the New Freedom Initiative (NFI) to reduce barriers to
full community integration for people with disabilities.[^290] The
initiative, which is designed to help ensure that Americans with
disabilities participate more fully in the life of their communities,
states the following:

Americans with disabilities should have every freedom to pursue careers,
integrate into the workforce, and participate as full members in the
economic marketplace. The New Freedom Initiative will help tear down
barriers to the workplace, and help promote full access and
integration.[^291]

With the NFI, President Bush continued the policy direction started by
his father when he signed ADA into law. The initiative continues to
support the coordinated activities of the Federal Government and state
governments to remove barriers that impede opportunities for community
participation. The NFI represents an important step in working to ensure
that all Americans with disabilities have the opportunity to learn and
develop skills, engage in productive work, and choose where to live and
participate in community life.[^292]

As part of the NFI, on June 18, 2001, President Bush issued Executive
Order 13217, "Community Based Alternatives for Individuals with
Disabilities." The Executive Order directs six federal
agencies---including the Departments of Justice, Education, and Labor,
as well as HHS, HUD, and the SSA---to evaluate their policies, programs,
and regulations to determine whether any should be revised or modified
to improve the availability of community-based services for people with
disabilities. In that order, the President emphasized that unjustified
isolation or segregation of qualified individuals with disabilities in
institutions is a form of prohibited discrimination, that the United
States is committed to community-based alternatives for individuals with
disabilities, and that the United States seeks to ensure that America's
community-based programs effectively foster independence and
participation in the community for Americans with disabilities.[^293]

The order also charged the Federal Government with providing assistance
to states and localities to swiftly implement the *Olmstead* decision.
In response, federal agencies have undertaken several initiatives,
including clarifying federal statutes and regulations to assist in the
transition of institutionalized individuals into more integrated
settings and increasing federal funding for programs and projects aimed
at expanding opportunities for community living. In March 2002, the Bush
Administration issued its first report, "Delivering on the Promise: A
Compilation of Individual Federal Agency Reports of Actions To Eliminate
Barriers and Promote Community Integration." The report identifies more
than 400 steps to removing barriers and improving community
integration.[^294] In 2004, a second progress report was issued that
further updates federal agency efforts to promote community
integration.[^295]

The current Administration, through a series of letters from the CMS to
states, has enjoined states to develop and implement plans for less
restrictive community options for LTSS that respect consumer
choice.[^296] The majority of states have both *Olmstead* plans and
cross-agency and stakeholder workgroups to focus on policy development,
capacity building, and systems change to steer the ship to promote
consumer choice and direction.

## Part X Gathering Clouds 

An overview of recent judicial decisions that are challenging long-term
services and supports reform efforts.

Despite these favorable winds, the past six years have seen a growing
number of court cases concerning access to LTSS at home and in community
settings for individuals with disabilities.[^297] Individuals with
disabilities and their families have grown increasingly impatient at the
pace of change. The Supreme Court in its *Olmstead* decision set a
general standard for state behavior in the future. If a state had "a
comprehensive, effectively working plan for placing qualified persons
with mental disabilities in less restrictive settings and a waiting list
moved at a reasonable pace," then there would be no effective claim for
a violation of Title II of ADA.[^298] However, the Court did not
elaborate what constituted a "reasonable pace" or an "effectively
working plan." The *Olmstead* "community integration" imperative set a
new expectation that a state rebalance its allocation of public
resources away from institutional services in nursing facilities to a
new mix of HCBS. In the past 40 years, public expenditure of a majority
of federal dollars in the Medicaid program has paid for institutional
services.[^299] Under Medicaid law, there is an entitlement to
institutional services that must be included in a state's Medicaid
program.[^300] There is no similar entitlement for home and community
LTSS.[^301] Under Section 1915(c) of the Social Security Act, a state
has the option of offering community services as an alternative to
institutional eligibility criteria.[^302] However, a state may select
the services, define their scope, and target a specific group of
Medicaid beneficiaries under an HCBS waiver.[^303]

For the past 10 years, Medicaid expenditures for home- and
community-based LTSS have grown rapidly. Between 1990 and 2003, HCBS
waiver expenditures increased more than tenfold to \$18.6 billion.[^304]
In 1990, home and community services represented just over 10 percent of
Medicaid long-term service expenditures. In 2003, the share of HCBS
funding had grown to 33 percent of Medicaid long-term service
funding.[^305]

Several significant factors lie behind the storm clouds of increased
litigation. Multiple research studies have documented the interest of
people with disabilities across the age span to remain in their own
homes and communities rather than more restrictive nursing facilities or
institutional settings.[^306] The majority of states have long waiting
lists for multiple HCBS waiver programs, despite the state authority to
limit the number of people who participate in the waivers.[^307] Federal
monitoring and enforcement of the *Olmstead* "community integration"
imperative has yet to become a priority of the Department of Justice
Civil Rights Division. No complaint has been filed or settlement reached
with a state that challenges "the reasonable pace" of implementation of
a state's plan to expand home and community support and service options.

However, protecting the rights of institutionalized people with
disabilities continues to remain a priority for the Civil Rights
Division of the Department of Justice.[^308] In August 2004, the Justice
Department found California in violation of Title II of ADA by failing
to provide services in the most integrated setting.[^309] The findings
resulted from an investigation of Laguna Honda Hospital and
Rehabilitation Center in San Francisco. Laguna Honda is one of the
largest publicly operated nursing homes in the country, with an average
daily census of 1,041 residents. For a nursing home, Laguna Honda serves
an unusually high number of residents under the age of
55---approximately 22 percent of the total residents. This segment of
the population tripled from 1990 to 2000 and continues to increase.

The Justice Department found evidence that California had failed to
ensure that residents had meaningful access to community alternatives.
Instead, the investigation concluded that nursing home placements were
authorized without requiring assessments to evaluate the appropriateness
of HCBS. Individuals in the nursing facility were also not informed
later of available community options.

The Justice Department as part of the Laguna Honda investigation did
examine the California *Olmstead* plan to expand community options. The
Justice Department concluded the following:

The plan lacks data regarding institutionalized persons with benchmarks
and timetables for diverting and transitioning current nursing facility
residents into community settings.[^310]

Appendix 1.E lays out the Justice Department's detailed remedial
measures to be implemented by California as a response to cited
violations of ADA. Remedial measures focus on changes to the assessment
process for revised policies and procedures to enable the target group
to make fully informed decisions, community capacity to provide services
in more integrated environments, and appropriate training for case
managers and care coordinators.[^311] The proposed remedial measures and
approach to the analysis of a state's *Olmstead* plan with requirements
of benchmarks and timelines offer considerations for future Justice
Department intervention on a systematic basis across all states.

In addition to federal action, as of October 2004, legal action on
behalf of individuals with disabilities had been filed in 25
states.[^312] The challenges to state policies can be grouped into two
broad categories:

-   **Access to Medicaid Home and Community Services.** The majority of
    these cases involve individuals with disabilities who want but
    cannot obtain HCBS. Challenges relate to both individuals with
    disabilities on waiting lists for services and individuals with
    disabilities who are currently in nursing or other LTC facilities.

-   **Limitations on Availability or HCBS Comparable to Services Offered
    in More Restrictive Settings.** The majority of these cases
    challenge state policies that affect the scope and quality of
    Medicaid services in the home or community setting. Several cases
    have challenged the adequacy of payments or rate setting for
    coverage of specific community-based services that create an
    unfavorable balance toward availability in institutional rather than
    community settings.

Recent decisions are mixed from across the federal circuits as different
fact situations and legal theories seek to extend and define the Supreme
Court's *Olmstead* decision. Three cases illustrate the storm clouds
ahead as individuals with disabilities seek to clarify and extend
judicial interpretation of the *Olmstead* "community integration"
imperative.

### New Types of Medicaid Service Are Not Required for Those Seeking Home Care:

### Rodriguez v. City of New York (1999)

In *Rodriguez v. City of New York,*[^313] a class of Medicaid-eligible
individuals with mental disabilities sought to have the city include
"safety-monitoring" services along with other personal care services in
its Medicaid personal care program. The individuals claimed that without
safety-monitoring services they would be unable to continue living in
their homes and would require institutionalization.[^314]

The Second Circuit denied relief, ruling that *Olmstead* reaffirms that
ADA does not require a state to offer a new type of Medicaid
service.[^315] The court relied on a footnote in *Olmstead*, which
provided that "States must adhere to ADA's nondiscrimination requirement
with regard to the services they in fact provide."[^316] Plaintiffs were
requesting new services, as New York does not provide safety monitoring
to individuals with physical or mental disabilities.[^317]

Notably, however, nothing in this footnote or in the court's discussion
of the fundamental alteration defense states that new services would
never be required to comply with ADA. In fact, the court's discussion of
the defense makes clear that the only factors to be considered in
determining what constitutes a fundamental alteration are the cost of
providing integrated services, the resources available, and the needs of
others.[^318] The language cited in *Rodriguez* appears simply to
reflect the court's clarification that ADA does not create an
entitlement to a specific "standard of care," but instead requires that
once a state chooses to provide services, it must not discriminate by
providing those services in an unnecessarily segregated setting.

### Institutionalization Is Not a Prerequisite for Individuals to Be Covered by Title II: Reducing Benefits to Those Outside of Institutional Settings While Maintaining Benefits to Those in Institutional Settings: Fisher v. Oklahoma Health Care Authority (2003) 

In *Fisher v. Oklahoma Health Care Authority*,[^319] the Tenth Circuit
was presented with the question of whether institutionalization is a
prerequisite for the application of *Olmstead.* Here, the Tenth Circuit
interpreted *Olmstead* to allow people with disabilities who, by reason
of a change in state policy, stand imperiled with segregation to
challenge that state policy under ADA's integration regulation without
first submitting to institutionalization.[^320] The *Fisher* holding's
importance to the greater community of people with disabilities cannot
be stressed enough. After *Fisher*, individuals with disabilities living
in community settings were protected from state efforts to
institutionalize or, in some cases, reinstitutionalize them. The case
prohibits a state from presenting individuals with a Hobson's choice
between remaining in the community under dangerous constraints or
entering state-supported institutions to gain access to needed services.

Oklahoma, through the Oklahoma Health Care Authority (OHCA), provided
prescription drug benefits to Advantage Program participants in the
community as well as residents in institutional settings.[^321] In
September 2002, OHCA notified participants that it would impose a cap of
five prescriptions per month on Advantage participants, effective
October 1, 2002.[^322] The state, meanwhile, continued to provide
unlimited prescriptions to patients in nursing facilities.[^323]

The Tenth Circuit interpreted *Olmstead* and ADA's integration
regulation to cover those living in community settings. To act the other
way would present Medicaid recipients with another choice. They could
choose to live in the community but accept benefits that were not
comparable to those with similar conditions living in institutions or
they could enter an institution and receive complete care but forgo the
benefit of living in the outside community.[^324]

Like so many other *Olmstead* cases, the Tenth Circuit also explored the
"fundamental alteration" language used by the Supreme Court. Oklahoma
defended the five-prescription cap in two ways: (1) the HCBS waiver
program is optional, and (2) "\[g\]iven . . . the State financial
crisis," Oklahoma's move to reduce an optional program rather than
eliminate it altogether is reasonable, a fiscal crisis fundamental
alteration defense."[^325] The Tenth Circuit expeditiously rejected the
first defense, noting that, under Title II of ADA, "a state may not
amend optional programs in such a way as to violate the integration
mandate."[^326] The Tenth Circuit articulated a boundary to a state's
use of the fundamental alteration defense, noting that the fact that a
program is optional does not allow the defense to be successful.
Instead, noted the court, the fact that a program is optional and
subject to state-proposed changes does not automatically constitute a
fundamental alteration in the state's services and programs and limit a
state's liability under Title II of ADA.[^327]

While not rejecting the fiscal crisis fundamental alteration defense,
the Tenth Circuit stated that courts will scrutinize state actions that
impede integration rather than deferring to reasonable state judgments.
"The fact that Oklahoma has a fiscal problem, by itself, does not lead
to an automatic conclusion that preservation of unlimited medically
necessary prescription benefits for participants in the Advantage
program will result in a fundamental alteration."[^328] *Fisher* further
clarifies the lines initially drawn by the Ninth Circuit in *Townsend*
by defining that "fiscal decisions" does not mean the courts will defer
to state judgments any time the state acts and defends its action by
asserting fiscal crisis.

### Access to Quality Care in Community Settings: Ball v. Biedess (2004)

In *Ball v. Biedess*,[^329] Medicaid recipients receiving home-based
care alleged that the Arizona Health Care Cost Containment System
(AHCCCS) was supplying an insufficient number of home care workers for
HCBS beneficiaries. The plaintiffs charged that under the federal
Medicaid Law and ADA, the AHCCCS administration is required to make home
and personal attendant services available in a scope and amount
necessary to allow individuals receiving Medicaid services to live in
the community. The failure to provide an adequate number of home care
workers threatened to force these individuals, in their desire for
adequate medical care, into nursing facilities.

The District Court ruled that the AHCCCS program failed to ensure that
recipients of HCBS received the prescribed services. The court ordered
AHCCCS to make extensive reforms to ensure that it "provide\[s\] each
individual who qualifies for its services with those services for which
the individual qualifies without gaps in service."[^330]

The court, citing the public health regulations, stated that agencies
must make payments to home and personal attendant service workers that
are sufficient to "to enlist enough providers so that services under the
plan are available to recipients at least to the extent that those
services are available to the general population."[^331] AHCCCS, the
court ordered, must establish payment rates and enlist a sufficient
number of providers to ensure that Medicaid recipients who are qualified
to receive community-based care receive quality of care and have access
to such care.[^332]

The ruling, like that in *Fisher*, represents a victory for Medicaid
recipients in community-based settings. The courts are consistently
prohibiting states from presenting those in community-based care
settings with a Hobson's choice of remaining in the community with
limited services or receiving a full array of supports and services only
in restrictive institutional settings. "Institutionalization is not a
viable choice," wrote the *Ball* court, "for patients who qualify for
AHCCCS programs but do not receive the services to which they are
entitled."[^333] Recipients of Medicaid services must not be forced,
through state funding decisions or state inaction, to choose between
inadequate access to needed LTSS in the community and
institutionalization.

Budget problems will continue to serve as the leading defense used by
states for slowing the pace of systems reform and rebalancing public
expenditures to support a more comprehensive set of choices for
individuals with disabilities to live at home and in community settings
with needed LTSS.

Current judicial decisions represent a glimpse of divergent views of
analysis regarding the future balancing of interests between state
discretion in fashioning the LTSS system with public resources and
consumer expectations for expanded choices to benefit from services in
the least restrictive environment. The slow pace of comprehensive reform
continues to bring judicial intervention. Over a dozen states have
agreed to court settlements that will accelerate the development of
community supports and choices for targeted classes of individuals with
disabilities.[^334]

## Part XI Recharting the Course

A final checklist of challenges and forecast summary for navigating the
rough waters of reform.

*Archeologists discovered the tomb of the "boy king" Tutankhamun in
Egypt's romantic Valley of the Kings in 1922, 3,000 years after his
death.*[^335] *Some say it was the richest discovery in the history of
mankind, uncovering five burial chambers and more than 5,000 works of
art.* The Untold Story *describes the intrigue of professional
archeologists and their relentless passion for uncovering antiquity. It
is rumored that the major benefactor for the project died shortly after
illegally entering one of the burial chambers not yet sanctioned by the
Egyptian government. However, there was little information uncovered
about Tutankhamen except for a lonely quote found on the last shrine
\[chamber\] surrounding his great sarcophagus, "I have seen yesterday; I
know tomorrow."*[^336]

*Archeologists spent their whole careers digging for the tomb of
Tutankhamun and, in the end, the prize was the world's grandest
collection of rare objects of art. The King Tut exhibit was shown around
the world and eventually ended up in an Egyptian museum, where
deterioration rapidly set in due to inadequate preservation. The
significance of the find was major in the world of archeology but left
many unanswered questions as to who the 15-year-old boy-king was as a
person and a ruler.*

### Concluding Thoughts

As the nation drags anchor and moves forward on this voyage that will
rechart the delivery and financing of LTSS, it is important to think
about what archeologists interested in aging and disability might find
1,000 years from now if they were to visit the first decade of the 21st
century. What policies would they find that reflected how a country only
a few hundred years old responded to its growing population with
disabilities and extended life span? What values and beliefs would these
policies reveal about the democracy?

The current crisis in health care and LTSS is at a crossroads. How
Americans respond to the critical issues facing millions of its seniors
and young people with disabilities will determine the health of the
nation for generations to come. The picture presented today identifies
little public or political interest in putting these issues onto the
national agenda. It is, however, first on the agenda of every state
budget committee. At 22 percent of the budget, the rising costs of
health care and LTSS are no longer sustainable. This fiscal crisis will
cause rough waters for the LTSS voyage and for the identified captain
and crew.

This review found that the current federal experience provides a complex
picture over time of response to a growing segment of the population in
need of LTSS to maintain their dignity and independence in daily living.
Depending on where you live, your age, your economic status, and the
nature of your disability, you will face different options and levels of
response to home- and community-based needs.

There is no single federal program or federal agency charged with
responsibility for management, funding, and oversight of LTSS at home
and in the community. There is no single entry point at a community
level for individuals with disabilities and seniors to learn about and
access service and support options. There are multiple federal programs
with varying policy objectives that embrace the values of consumer
choice and independence in daily living, but there is no comprehensive,
integrated delivery system. There are also differences in service
philosophy and administration between programs for individuals with
disabilities under age 65 and those for seniors.

The tugboats are full of young people and seniors with disabilities who
continue to push forward with the need for consumer direction and
control and more responsibility for managing support options and
caregivers. There remains significant disagreement about the elements of
a comprehensive LTSS system, the relationship between the medical model
as the dominant paradigm versus a social empowerment model of consumer
choice and control, and how to balance family caregiving with public
responsibility for long-term supports.

This chapter on current federal experience provides a rationale for
rethinking current public policy regarding LTSS. Disability is a natural
part of the human experience over time. At some point, many Americans
will need assistance with such activities as dressing, bathing, eating,
and daily living. The current system of entitlement provides maximum
assistance with daily living and personal assistance in the most
restrictive environments, skilled nursing facilities. Integrated
delivery systems that build on a presumption of support at home and in
the community must be built through the design and development of
consistent policy goals across all federal agencies. The captains are
left with a final checklist of challenges and a brief summary of
forecasts for navigating the rough waters of reform.

### Checklist of Challenges

-   **Financial.** Runaway costs of state Medicaid spending and impact
    on people and children with disabilities.

-   **Policy.** Lack of coherent public policy that people with
    disabilities should have access to LTSS to maintain lifestyle and
    independence.

-   **Political.** Unwillingness of Congress to put the issue of LTSS on
    the national agenda, although the issue is very high on state
    agendas because of rising costs.

-   **Public Perception.** Low interest in and understanding of the
    urgency and importance to all Americans of the current growing
    crisis in the need for LTSS.

-   **Federal System.** Fragmented across agencies, with no single
    agency managing or coordinating reform.

-   **State Systems.** Fragmented delivery systems with uneven access
    and service provisions depending on the state's fiscal health.

-   **Workforce.** Role of government in addressing the challenges of
    the current workforce of caregivers, both formal and informal.

-   **Legislation.** Current system of LTC is unbalanced toward
    institutional and restrictive environments.

-   **Demographic Shifts.** The impact of extended life expectancies,
    decreased fertility rates, and more women in the workforce, along
    with rising disability rates for those age 65 and under.

-   **Needs.** More consumer direction and control and understanding of
    what LTSS are needed for people across disabilities, gender, age,
    and ethnic background.

### Forecast Summary

#### Forecast: Ask the Hard Questions

William Scanlon writes that most exercises in forecasting visions for
LTSS policy do not address the following hard questions about goals and
outcomes: What services should be guaranteed to individuals unable to
provide for themselves? What protections from catastrophic loss,
financial or otherwise, should be afforded? Most important, who will pay
for these protections?[^337]

#### Forecast: Don't Forget the Beneficiaries

Robert Schalock suggests a three-part test to evaluate future policy
development that focuses on the following:

-   The individual beneficiary and the impact of any changes in
    eligibility, funding, and services delivery on their lives related
    to independence, productivity, community, and personal well-being.

-   The service delivery level, and any changes in service delivery
    patterns and the conversion of the system away from programs and
    toward individuals that allows for personal control and individual
    choice and is truly based on the type and intensity of
    individualized needed supports.

-   The societal level and its ability to integrate disability policy,
    funding, and outcomes-based evaluation with equality of opportunity,
    full participation, independent living, and economic
    self-sufficiency.[^338]

#### Forecast: Prepare to Navigate Choppy Waters and Difficult Storms

The 2004 NCD report *Consumer-Directed Health Care: How Well Does It
Work?* identified five factors that stand in the way of change in policy
and practice to expand consumer choice and participation in an LTSS
system for the future:

-   Beware of the institutional bias of Medicaid in the use of HCBS
    waivers that require states to demonstrate cost neutrality with a
    comparison of costs to institutional care.

-   Expect to find an underpaid, shrinking labor force that is unable to
    keep up with growing demand.

-   Recognize that the increasing share of total budget costs now
    averages 22 percent of state budgets.

-   Look out for consumer and caregiver education and skill-building
    programs needed by beneficiaries to develop the skills to set goals
    and take responsibility for managing budgets and service delivery.

-   Do not expect to see common definitions in research that has
    effectively evaluated outcome and cost data for consumer-directed
    services. [^339]

#### Forecast: Look for the Favorable Winds

Positive forces for change began with the passage of ADA in 1990,
followed by the Supreme Court's *Olmstead* decision in 1999 and the
subsequent Administration actions from 2000 to the present. These forces
provide a platform to support policy and program changes for a long-term
support system that embraces consumer choice to live in the least
restrictive environment at home and benefit from community
participation. Look also for new court decisions pushing the states to
accelerate systems change.

#### Forecast: Keep the Deliberations Fair

Estes and Linkins suggest that the approach to LTSS in the United States
for beneficiaries and family caregivers must be one that is "socially
just, that promotes gender, ethnic, intergenerational, and class justice
through a system that is accessible, affordable, and universal."[^340]

### Words for Safe Travel

Rheinhold Niebuhr, a Protestant theologian, wrote about the "social
gospel" movement in the early part of the 20th century and reminded
Americans that designing just policy cannot be done from some esoteric
ethic that may or may not apply to a certain group of people and that
Americans must first and foremost agree on what it means to be human and
what it means to be just.[^341]

#   {#section-3 .unnumbered}

# Appendix 1.A Comparing Caregiver Characteristics by Age of Recipient

+------------------+-------------------------+-------------------------+
|                  | Recipients 18--49       | Recipients 50 or Older  |
+------------------+-------------------------+-------------------------+
| Average          | 33                      | 75                      |
| recipient age    |                         |                         |
+------------------+-------------------------+-------------------------+
| Relationship     | Adult child, sibling,   | Mother, grandmother, or |
|                  | or nonrelative          | father                  |
+------------------+-------------------------+-------------------------+
| Pr               | Mental illness,         | Aging, Alzheimer's,     |
| oblems/Illnesses | depression, or          | cancer, diabetes, heart |
|                  | emotional problems      | disease, mobility,      |
|                  | financial problems      | blindness               |
+------------------+-------------------------+-------------------------+
| Average          | 41                      | 47                      |
| caregiver age    |                         |                         |
+------------------+-------------------------+-------------------------+
| Demographics     | Working                 | Retired, married        |
+------------------+-------------------------+-------------------------+
| Support          | Primary caregivers feel | Receive more funding    |
|                  | financial hardships     |                         |
|                  |                         | Provide three or more   |
|                  |                         | activities of daily     |
|                  |                         | living                  |
+------------------+-------------------------+-------------------------+

*Base:* 1,247 caregivers in the United States.

*Source:* Caregiving in the United States, National Alliance for
Caregiving, and American Association of Retired Persons, 2004.

# Appendix 1.B Demographic Profile of Caregivers by Age of Recipient

+-----------------------+--------+-----------------+-----------------+
|                       | Total  | Caregivers of   | Caregivers of   |
|                       |        | recipients      | recipients 50+  |
|                       |        | 18--49          |                 |
+=======================+========+=================+=================+
| **Total**             | 100%   | 20%             | 79%             |
+-----------------------+--------+-----------------+-----------------+
| ### Gender            | ###    | ###             | ###             |
+-----------------------+--------+-----------------+-----------------+
| Male                  | 39%    | 44%             | 37%             |
+-----------------------+--------+-----------------+-----------------+
| Female                | 61     | 56              | 63              |
+-----------------------+--------+-----------------+-----------------+
| ### Race of Caregiver | ###    | ###             | ###             |
+-----------------------+--------+-----------------+-----------------+
| White                 | 73%    | 69%             | 74%             |
+-----------------------+--------+-----------------+-----------------+
| African American      | 12     | 16              | 11              |
+-----------------------+--------+-----------------+-----------------+
| Hispanic              | 10     | 11              | 10              |
+-----------------------+--------+-----------------+-----------------+
| Asian American        | 4      | 4               | 4               |
+-----------------------+--------+-----------------+-----------------+
| ### Age of Caregiver  | ###    | ###             | ###             |
+-----------------------+--------+-----------------+-----------------+
| Under 35 years old    | 26%    | 42%             | 22%             |
+-----------------------+--------+-----------------+-----------------+
| 35--49                | 32     | 30              | 33              |
+-----------------------+--------+-----------------+-----------------+
| 50--64                | 30     | 19              | 32              |
+-----------------------+--------+-----------------+-----------------+
| 65 or older           | 13     | 9               | 13              |
+-----------------------+--------+-----------------+-----------------+
| Mean (years)          | 46 yrs | 41 yrs          | 47 yrs          |
+-----------------------+--------+-----------------+-----------------+
| ### Marital status    | ###    | ###             | ###             |
+-----------------------+--------+-----------------+-----------------+
| Married/living with   | 62%    | 53%             | 63%             |
| partner               |        |                 |                 |
+-----------------------+--------+-----------------+-----------------+
| Single, never married | 18     | 22              | 17              |
+-----------------------+--------+-----------------+-----------------+
| Separated/divorced    | 14     | 17              | 14              |
+-----------------------+--------+-----------------+-----------------+
| Widowed               | 6      | 7               | 6               |
+-----------------------+--------+-----------------+-----------------+
| ###                   | ###    | ###             | ###             |
|  Education attainment |        |                 |                 |
+-----------------------+--------+-----------------+-----------------+
| High school or less   | 34%    | 41%             | 33%             |
+-----------------------+--------+-----------------+-----------------+
| Some college          | 27     | 3               | 26              |
+-----------------------+--------+-----------------+-----------------+
| Technical school      | 3      | 2               | 3               |
+-----------------------+--------+-----------------+-----------------+
| College graduate      | 22     | 18              | 23              |
+-----------------------+--------+-----------------+-----------------+
| Graduate school +     | 13     | 8               | 14              |
+-----------------------+--------+-----------------+-----------------+
| #                     | ###    | ###             | ###             |
| ## Current employment |        |                 |                 |
+-----------------------+--------+-----------------+-----------------+
| Employed full time    | 48%    | 54%             | 47%             |
+-----------------------+--------+-----------------+-----------------+
| Employed part time    | 11     | 12              | 10              |
+-----------------------+--------+-----------------+-----------------+
| Not employed          | 41     | 33              | 43              |
+-----------------------+--------+-----------------+-----------------+
| ### Household income  | ###    | ###             | ###             |
+-----------------------+--------+-----------------+-----------------+
| \<\$30K               | 25%    | 32%             | 22%             |
+-----------------------+--------+-----------------+-----------------+
| \$30K--\$50K          | 26     | 27              | 25              |
+-----------------------+--------+-----------------+-----------------+
| \$50K--\$75K          | 18     | 19              | 18              |
+-----------------------+--------+-----------------+-----------------+
| \$75K--\$100K         | 9      | 9               | 9               |
+-----------------------+--------+-----------------+-----------------+
| \$100K +              | 15     | 7               | 17              |
+-----------------------+--------+-----------------+-----------------+

*Source:* National Alliance for Caregiving and AARP. (2004) Caregiving
in the U.S. Available at: www.caregiving.org/04finalreport.pdf.

# Appendix 1.C Federal Demonstrations

+------------+----------------------+------------------+---------------+
| *          |                      |                  |               |
| *Long-Term |                      |                  |               |
| Services   |                      |                  |               |
| and        |                      |                  |               |
| Support:   |                      |                  |               |
| Reform     |                      |                  |               |
| St         |                      |                  |               |
| rategies** |                      |                  |               |
+============+======================+==================+===============+
| **In       | **Funders**          | **Focus**        | *             |
| itiative** |                      |                  | *Evaluation** |
+------------+----------------------+------------------+---------------+
| Cash and   | Administration on    | Individuals of   | Independent   |
| Counseling | Aging,               | various ages and | evaluation    |
|            |                      | disabilities     | will study    |
|            | Robert Wood Johnson  | direct their own | costs,        |
|            | Foundation,          | supportive       | consumer      |
|            |                      | services and     | satisfaction, |
|            | Office of Planning   | hire their own   | access to     |
|            | and Evaluation, and  | care managers    | home-based    |
|            |                      | with an          | services, and |
|            | APSE at the          | individualized   | qu            |
|            | Department of Health | budget.          | ality-of-life |
|            | and Human Services   |                  | changes.      |
|            |                      | Eleven new       |               |
|            | \$25 million         | states funded in |               |
|            |                      | October 2004     |               |
|            | 2004--2006           | that follow      |               |
|            |                      | pilots in        |               |
|            | www.c                | Florida, New     |               |
|            | ashandcounseling.org | Jersey, and      |               |
|            |                      | Arkansas.        |               |
|            |                      |                  |               |
|            |                      | New states are   |               |
|            |                      | Alabama, Iowa,   |               |
|            |                      | Kentucky,        |               |
|            |                      | Michigan,        |               |
|            |                      | Minnesota, New   |               |
|            |                      | Mexico,          |               |
|            |                      | Pennsylvania,    |               |
|            |                      | Rhode Island,    |               |
|            |                      | Vermont,         |               |
|            |                      | Washington, and  |               |
|            |                      | West Virginia.   |               |
+------------+----------------------+------------------+---------------+
| Aging and  | Administration on    | Create a single, | Will evaluate |
| Disability | Aging and            | coordinated      | whether the   |
| Resource   |                      | system of        | Resource      |
| Centers    | Centers for Medicare | information and  | Centers       |
| (ADRCs)    | and Medicaid         | access for all   | increase      |
|            | Services (CMS)       | people seeking   | informed      |
|            |                      | long-term        | decision      |
|            | \$19 million         | support to       | making,       |
|            |                      | enhance          | meaningful    |
|            | 2003--2006           | individual       | choice, and   |
|            |                      | choice and       | access to     |
|            | www.adrc.org         | informed         | long-term     |
|            |                      | decision making. | services and  |
|            |                      |                  | supports in   |
|            |                      | The 23 states    | the most      |
|            |                      | funded are       | integrated    |
|            |                      | Louisiana,       | setting.      |
|            |                      | Maine, Maryland, |               |
|            |                      | Massachusetts,   |               |
|            |                      | Minnesota,       |               |
|            |                      | Montana, New     |               |
|            |                      | Hampshire, New   |               |
|            |                      | Jersey,          |               |
|            |                      | Pennsylvania,    |               |
|            |                      | Rhode Island,    |               |
|            |                      | South Carolina,  |               |
|            |                      | West Virginia,   |               |
|            |                      | Arkansas,        |               |
|            |                      | Alaska,          |               |
|            |                      | California,      |               |
|            |                      | Florida,         |               |
|            |                      | Georgia,         |               |
|            |                      | Illinois,        |               |
|            |                      | Indiana, Iowa,   |               |
|            |                      | New Mexico,      |               |
|            |                      | North Carolina,  |               |
|            |                      | and Wisconsin.   |               |
+------------+----------------------+------------------+---------------+
| Real       | CMS                  | States are       | Focus on      |
| Choice     |                      | funded to build  | sustainable   |
| Systems    | \$200 million        | infrastructure   | system        |
| Change     |                      | and pursue       | changes       |
| Grants     | 2001--2007           | policy changes   | concerning    |
|            |                      | that result in   | the approach  |
|            | www.hcbs.org         | "effective and   | to service    |
|            |                      | enduring         | delivery,     |
|            |                      | improvements in  | exercise of   |
|            |                      | community        | meaningful    |
|            |                      | long-term        | choices with  |
|            |                      | support          | expanded      |
|            |                      | systems." There  | support       |
|            |                      | have been four   | options to    |
|            |                      | rounds of        | live in the   |
|            |                      | funding that     | most          |
|            |                      | states have      | integrated    |
|            |                      | competed for     | setting       |
|            |                      | that target      | appropriate,  |
|            |                      | specific theme   | rebalancing   |
|            |                      | areas, such as   | of funding to |
|            |                      | integrating      | expand        |
|            |                      | long-term        | community     |
|            |                      | supports with    | living        |
|            |                      | accessible       | preferences   |
|            |                      | affordable       | and           |
|            |                      | housing,         | priorities,   |
|            |                      | improving and    | and nursing   |
|            |                      | expanding        | home          |
|            |                      | personal         | diversion and |
|            |                      | assistance       | transition.   |
|            |                      | services that    |               |
|            |                      | are consumer     | All states    |
|            |                      | directed, and    | have one or   |
|            |                      | enhancing        | more grants.  |
|            |                      | quality          |               |
|            |                      | management       |               |
|            |                      | systems.         |               |
|            |                      |                  |               |
|            |                      | Other grants     |               |
|            |                      | focus on         |               |
|            |                      | comprehensive    |               |
|            |                      | system reform    |               |
|            |                      | efforts.         |               |
+------------+----------------------+------------------+---------------+
| In         | CMS                  | States are       | Focus on cost |
| dependence |                      | funded through   | savings,      |
| Plus       | [www.cms.hhs.gov/\   | the HCBS waiver  | consumer      |
|            | i                    | authority to     | satisfaction  |
| Waiver     | ndependenceplus](htt | offer            | and outcomes, |
| Dem        | p://www.cms.hhs.gov/ | individualized   | and other     |
| onstration | %0Bindependenceplus) | budgets and      | benefits of   |
|            |                      | consumer         | consumer      |
|            |                      | self-direction.  | direction.    |
|            |                      |                  |               |
|            |                      | Nine states have |               |
|            |                      | been approved:   |               |
|            |                      |                  |               |
|            |                      | California, New  |               |
|            |                      | Hampshire,       |               |
|            |                      | Louisiana, South |               |
|            |                      | Carolina,        |               |
|            |                      | Maryland,        |               |
|            |                      | Florida, North   |               |
|            |                      | Carolina,        |               |
|            |                      | Connecticut, and |               |
|            |                      | Delaware         |               |
+------------+----------------------+------------------+---------------+

*Source:* Author's compilation.

# Appendix 1.D Overview of Cash and Counseling Demonstrations

+-----------------+-----------------+-----------------+-----------------+
|                 | **Arkansas**    | **New Jersey**  | **Florida**     |
+-----------------+-----------------+-----------------+-----------------+
| State program   | Independent     | Personal        | Co              |
| name            | Choices         | Preference      | nsumer-Directed |
|                 |                 |                 | Care            |
+-----------------+-----------------+-----------------+-----------------+
| Implementation  | December 1998   | November 1999   | May 2000        |
| date            |                 |                 |                 |
+-----------------+-----------------+-----------------+-----------------+
| Authority for   | Medicaid state  | Medicaid state  | Section 1915(c) |
| personal        | plan: personal  | plan: personal  | HCBS waivers    |
| assistance      | care option     | care option     |                 |
| services        |                 |                 |                 |
+-----------------+-----------------+-----------------+-----------------+
| Populations     | Elderly and     | Elderly and     | Elderly, adults |
| served          | adults with a   | adults with a   | with a physical |
|                 | physical        | physical        | disability, and |
|                 | disability      | disability      | children with a |
|                 |                 |                 | developmental   |
|                 |                 |                 | disability      |
+-----------------+-----------------+-----------------+-----------------+
| Territory       | Statewide       | Statewide       | Central and     |
| covered         |                 |                 | South Florida:  |
|                 |                 |                 | Elderly and     |
|                 |                 |                 | adults with a   |
|                 |                 |                 | physical        |
|                 |                 |                 | disability      |
|                 |                 |                 |                 |
|                 |                 |                 | Statewide:      |
|                 |                 |                 | Children and    |
|                 |                 |                 | adults with     |
|                 |                 |                 | developmental   |
|                 |                 |                 | disabilities    |
+-----------------+-----------------+-----------------+-----------------+
| Average monthly | \$350           | \$1,300         | \$300           |
| cash allotment  |                 |                 |                 |
+-----------------+-----------------+-----------------+-----------------+
| Formula for     | A rate          | Amount based on | Individual's    |
| determining     | corresponding   | the numbers of  | historic        |
| cash allotment  | to an           | hours in the    | Medicaid HCBS   |
|                 | individual's    | individual's    | waiver          |
|                 | assessed number | previous        | expenditures    |
|                 | of hours of     | personal care   | reduced between |
|                 | personal care   | assessment      | 8% and 17% to   |
|                 | reduced between | multiplied by   | account for     |
|                 | 0% and 30% to   | the state's     | actual use of   |
|                 | account for     | hourly rates    | services versus |
|                 | actual number   | for personal    | projected use.  |
|                 | of hours        | care.           |                 |
|                 | service used    |                 |                 |
|                 | versus          |                 |                 |
|                 | projected use.  |                 |                 |
+-----------------+-----------------+-----------------+-----------------+
| Final caseload  | 2,008 people    | 1,762 people    | 2,820 people    |
| (for            |                 |                 |                 |
| evaluation)     |                 |                 |                 |
+-----------------+-----------------+-----------------+-----------------+

*Source:* University of Maryland, Center on Aging, Cash and Counseling
At-a-Glance, at www.hhp.umd.edu/AGING/CCDemo/ataglance.html, accessed
June 2005.

#  

# Appendix 1.E 50 States, the District of Columbia, and U.S. Territories with Initiatives to Improve Access to Long-Term Care Services

  ---------------------------------------------------------------------------------------------------------------
  **State**       **Integrated   **Streamlined      **Expanded      **Nursing        **Informed   **Other\*\***
                  LTC Systems**  Eligibility        Eligibility**   Facility         Consumer     
                                 Determinations**                   Resident         Choice**     
                                                                    Transition\***                
  --------------- -------------- ------------------ --------------- ---------------- ------------ ---------------
  Alabama         x                                                 x                x            x

  Alaska                         x                                  x                x            x

  Arkansas        x              x                                  x                x            x

  California                                                        x                x            x

  Colorado        x              x                                  x                x            x

  Connecticut     x                                                 x                x            

  Delaware        x                                 x               x                x            x

  District of     x              x                  x               x                x            x
  Columbia                                                                                        

  Florida         x                                                 x                x            x

  Georgia         x                                                 x                             x

  Guam            x              x                                  x                x            

  Hawaii          x              x                                                   x            x

  Idaho           x                                 x               x                x            x

  Illinois        x              x                                  x                x            x

  Indiana                        x                  x               x                x            

  Iowa            x                                                 x                x            

  Kansas                                            x               x                x            

  Kentucky                                                          x                x            x

  Louisiana       x              x                  x               x                x            x

  Maine                                                                                           x

  Maryland                                                          x                x            

  Massachusetts   x              x                  x               x                x            x

  Michigan        x              x                                  x                x            x

  Minnesota       x                                                 x                x            x

  Mississippi                                                       x                             x

  Missouri        x              x                                  x                x            x

  Montana                                                                            x            x

  Nebraska        x                                                 x                x            

  Nevada                                                            x                x            x

  New Hampshire   x              x                                  x                x            x

  New Jersey      x                                                 x                             x

  New York                                                          x                             

  North Carolina  x                                 x               x                x            

  North Dakota                                                                       x            

  No. Mariana     x                                                                  x            
  Islands                                                                                         

  Ohio            x                                                 x                x            

  Oklahoma                       x                  x               x                x            x

  Oregon                                                                             x            

  Pennsylvania    x              x                  x               x                x            x

  Rhode Island    x                                                 x                x            x

  South Carolina  x                                                 x                x            x

  Tennessee       x                                 x               x                x            x

  Texas           x                                                 x                x            x

  Utah            x                                                 x                x            x

  Vermont         x              x                  x               x                x            x

  Virginia                                                                           x            x

  Washington                     x                  x               x                x            x

  West Virginia                  x                  x               x                x            x

  Wisconsin       x              x                  x               x                x            x

  Wyoming                        x                  x               x                x            x

  **Total**       **32**         **20**             **16**          **43**           **45**       **38**
  ---------------------------------------------------------------------------------------------------------------

\*NFT transition and diversion activities encompass a range of
activities, including increasing housing availability and accessibility,
developing peer support networks, and developing outreach materials and
conducting outreach.

\*\*This category includes the areas of community education, housing,
home modifications, assistive technology, and transportation.

*Source:* HCBS, [www.hcbs.org](http://www.hcbs.org/), accessed June
2005.

# Appendix 1.F Federal Tables

**Table 1. Federal Health Care Programs**

<table>
<colgroup>
<col style="width: 10%" />
<col style="width: 10%" />
<col style="width: 8%" />
<col style="width: 10%" />
<col style="width: 10%" />
<col style="width: 6%" />
<col style="width: 6%" />
<col style="width: 5%" />
<col style="width: 9%" />
<col style="width: 4%" />
<col style="width: 12%" />
<col style="width: 4%" />
</colgroup>
<thead>
<tr class="header">
<th><strong>Domains and Programs</strong></th>
<th><strong>Year Authorized</strong></th>
<th><strong>Responsible Agency</strong></th>
<th><strong>Eligibility</strong></th>
<th><strong>Scope Of Service</strong></th>
<th><strong>Consumer Directed</strong></th>
<th><strong>Consumer-Perspective Quality</strong></th>
<th><strong>State/ Local Partners</strong></th>
<th><strong>Financing Mechanism</strong></th>
<th><strong>Innovation</strong></th>
<th><strong>Utilization: Trends Over Time</strong></th>
<th><strong>Universal Design</strong></th>
</tr>
</thead>
<tbody>
<tr class="odd">
<td><strong>Medicare Part A</strong></td>
<td>Social Security Act Amendments of 1965, Title XVIII, Part A</td>
<td>Centers for Medicare and Medicaid Services (CMS)</td>
<td>Age, qualified disability</td>
<td>Hospital insurance for elderly and disabled who qualify, short-term
acute care, skilled nursing care, home health, hospice care.</td>
<td>No</td>
<td>No</td>
<td>Yes</td>
<td>Direct Payments</td>
<td>No</td>
<td><p>FY 03</p>
<p>$150,970,000,000</p>
<p>FY 04 est</p>
<p>$166,182,000,000</p>
<p>FY 05 est</p>
<p>$181,350,000,000</p>
<p>2003 enrollees</p>
<p>40,884,000</p>
<p>2004 est enrollees</p>
<p>41,607,000</p>
<p>2005 est enrollees</p>
<p>42,280,000</p></td>
<td>No</td>
</tr>
<tr class="even">
<td><strong>Medicare Part B</strong></td>
<td>Social Security Act Amendments of 1965, Title XVIII, Part B</td>
<td>CMS</td>
<td>Age, qualified disability</td>
<td>Supplemental health insurance, home health, outpatient
rehabilitation services, physical, speech and occupational therapy.
Durable medical equipment at home.</td>
<td>Varies</td>
<td>Varies</td>
<td>Yes</td>
<td>Direct Payments</td>
<td>No</td>
<td><p>FY 03</p>
<p>$121,628,633,000</p>
<p>FY 04 est</p>
<p>$127,976,000,000</p>
<p>FY 05 est</p>
<p>$140,705,000,000</p>
<p>2003 enrollees</p>
<p>38,369,000</p>
<p>2004 est enrollees</p>
<p>38,928,000</p>
<p>2005 est enrollees</p>
<p>39,477,000</p></td>
<td>No</td>
</tr>
<tr class="odd">
<td><strong>Medicare Part D</strong></td>
<td>Social Security Act Amendments of 2003</td>
<td>CMS</td>
<td>Age, qualified disability</td>
<td>Prescription drugs.</td>
<td>No</td>
<td>No</td>
<td>No</td>
<td>Direct benefit</td>
<td>No</td>
<td>Estimates of costs exceed $100 billion</td>
<td>N/A</td>
</tr>
<tr class="even">
<td><strong>Medicaid</strong></td>
<td>Social Security Act, Title XIX, 1965</td>
<td>CMS</td>
<td>Means/<br />
disability</td>
<td>Skilled nursing, home health, case management, personal care,
rehabilitation.</td>
<td>Varies</td>
<td>Mix</td>
<td>Yes</td>
<td>Federal/ state cost share: entitlement</td>
<td>No</td>
<td><p>FY 03</p>
<p>$169,105,405,000</p>
<p>FY 04 est</p>
<p>$177,232,410,000</p>
<p>FY 05 est</p>
<p>$183,302,865,000</p>
<p>2003 enrollees</p>
<p>41,900,000</p>
<p>2004 est enrollees</p>
<p>42,900,000</p>
<p>2005 est enrollees</p>
<p>43,600,000</p></td>
<td>No</td>
</tr>
<tr class="odd">
<td colspan="12"><em>Source:</em> Catalog of Federal Domestic
Assistance. General Services Administration, Office of Governmentwide
Policy, Office of Acquisition Policy, Regulatory and Federal Assistance
Publication Division. <a href="http://www.cfda.gov/">www.cfda.gov</a>,
accessed June 2005.</td>
</tr>
</tbody>
</table>

**Table 2. Federal Social Support, Personal Assistance Services, and
Home Care Programs**

<table>
<colgroup>
<col style="width: 9%" />
<col style="width: 10%" />
<col style="width: 11%" />
<col style="width: 12%" />
<col style="width: 11%" />
<col style="width: 5%" />
<col style="width: 5%" />
<col style="width: 4%" />
<col style="width: 7%" />
<col style="width: 5%" />
<col style="width: 9%" />
<col style="width: 5%" />
</colgroup>
<thead>
<tr class="header">
<th><strong>Domains And Programs</strong></th>
<th><strong>Year Authorized</strong></th>
<th><strong>Responsible Agency</strong></th>
<th><strong>Eligibility</strong></th>
<th><strong>Scope of Service</strong></th>
<th><strong>Consumer Directed</strong></th>
<th><strong>Consumer-Perspective Quality</strong></th>
<th><strong>State/ Local Partners</strong></th>
<th><strong>Financing Mechanism</strong></th>
<th><strong>Innovation or Systems Change</strong></th>
<th><strong>Utilization: Trends Over Time</strong></th>
<th><strong>Universal Design</strong></th>
</tr>
</thead>
<tbody>
<tr class="odd">
<td><strong>Independent Living State Grants</strong></td>
<td>Rehabilitation Act 1973 Title VII</td>
<td>Department of Education (DOE), Office of Assistant Secretary for
Special Education and Rehabilitative Services</td>
<td>Disability</td>
<td>Support operation of statewide independent living councils
(SILCs)</td>
<td>N/A</td>
<td>Yes</td>
<td>Yes</td>
<td>Formula Grants</td>
<td>Yes</td>
<td><p>FY 03 $22,151,000 FY 04 est $22,020,000</p>
<p>FY 05 est</p>
<p>$22,020,000</p>
<p>FY 2003</p>
<p>78 designated state units received funds</p></td>
<td>No</td>
</tr>
<tr class="even">
<td><strong>Centers for Independent Living</strong></td>
<td>Rehabilitation Act 1973 Title VII</td>
<td>DOE, Office of Assistant Secretary for Special Education and
Rehabilitative Services</td>
<td>Disability</td>
<td>Establishment and operation of CILs or SILCs</td>
<td>Yes</td>
<td>Yes</td>
<td>Yes</td>
<td>Competi-tive Grants</td>
<td>Yes</td>
<td><p>FY 03 $69,545,000 FY 04 est $73,563,000</p>
<p>FY 05 est</p>
<p>$73,563,000</p>
<p>Grants support the operation of approximately 320 centers</p></td>
<td>Yes</td>
</tr>
<tr class="odd">
<td><strong>Special Programs for the Aging</strong></td>
<td>Title III, Part B 1965</td>
<td>Administration on Aging (AOA)/Depart-ment of Health and Human
Services (HHS)</td>
<td>Age (60+)</td>
<td>Implementation and coordination of community-based supportive
services</td>
<td>No</td>
<td>Varies</td>
<td>Yes</td>
<td>Formula Grants</td>
<td>Varies</td>
<td><p>FY 03 $355,673,000 FY 04 est</p>
<p>$353,888,665</p>
<p>FY 05 est</p>
<p>357,000,000</p>
<p>FY 2003</p>
<p>56 grants awarded</p>
<p>FYs 2004 and 2005</p>
<p>56 grants anticipated</p></td>
<td>Varies</td>
</tr>
<tr class="even">
<td><strong>Senior Companion Program</strong></td>
<td>Domestic Volunteer Service Act 1973</td>
<td>Federal Agency Corporation for National and Community Service</td>
<td>Senior Companions (60+); adults served (21+); one or more activity
of daily living (ADL) limitation and at risk for
institutionalization</td>
<td>Engaging people (60+) and providing supportive services to disabled
adults</td>
<td>Varies</td>
<td>Yes</td>
<td>Yes</td>
<td>Matching Grants</td>
<td>No</td>
<td><p>FY 03</p>
<p>$45,255,000</p>
<p>FY 04 est</p>
<p>$45,255,000</p>
<p>FY 05 est</p>
<p>$45,548,000</p></td>
<td>No</td>
</tr>
<tr class="odd">
<td><strong>Medicaid HCBS Waiver</strong></td>
<td>Omnibus Reconciliation Act (OBRA) Section 2176 1981</td>
<td>CMS</td>
<td>Means test, state variation medically needy, and waivers specific to
a target population (elderly, mental retardation, physical disabilities,
brain injury)</td>
<td>Respite care, personal care, habilitation, environmental
adaptations, assistive technology, service coordination</td>
<td>Varies</td>
<td>Varies</td>
<td>Yes</td>
<td>State/ federal cost share</td>
<td>Yes</td>
<td><p>FY 02</p>
<p>$16.3 billion</p>
<p>FY 03</p>
<p>$18.6 billion</p>
<p>FY 04</p>
<p>$19 billion</p></td>
<td>Varies</td>
</tr>
<tr class="even">
<td><strong>Social Services Block Grant</strong></td>
<td>Social Security Act, Title XX, OBRA 1981</td>
<td>Administration for Children and Families, HHS</td>
<td>Means tested, low-income individuals and families</td>
<td>Grants to states for support of social services programs</td>
<td>Varies</td>
<td>No</td>
<td>Yes</td>
<td>Formula Grants</td>
<td>No</td>
<td><p>FY 03</p>
<p>$1.7 billion</p>
<p>FY 04 est</p>
<p>$1.7 billion</p>
<p>FY 05 est</p>
<p>$1.7 billion</p>
<p>FY 2003</p>
<p>57 grants awarded</p>
<p>FYs 2004 and 2005 est</p>
<p>57 grants</p></td>
<td>Varies</td>
</tr>
<tr class="odd">
<td colspan="12"><em>Source:</em> Catalog of Federal Domestic
Assistance. General Services Administration, Office of Governmentwide
Policy, Office of Acquisition Policy, Regulatory and Federal Assistance
Publication Division. <a href="http://www.cfda.gov/">www.cfda.gov</a>,
accessed June 2005.</td>
</tr>
</tbody>
</table>

Table 3. Federal Income Maintenance Support Programs

<table>
<colgroup>
<col style="width: 10%" />
<col style="width: 8%" />
<col style="width: 11%" />
<col style="width: 8%" />
<col style="width: 8%" />
<col style="width: 5%" />
<col style="width: 4%" />
<col style="width: 8%" />
<col style="width: 10%" />
<col style="width: 4%" />
<col style="width: 14%" />
<col style="width: 5%" />
</colgroup>
<thead>
<tr class="header">
<th><strong>Domains and Programs</strong></th>
<th><strong>Year Authorized</strong></th>
<th><strong>Responsible Agency</strong></th>
<th><strong>Eligibility</strong></th>
<th><strong>Scope of Service</strong></th>
<th><strong>Consumer Direction</strong></th>
<th><strong>Consumer-Perspective Quality</strong></th>
<th><strong>State/ Local Partners</strong></th>
<th><strong>Financing Mechanism</strong></th>
<th><strong>Innovation or Systems Change</strong></th>
<th><strong>Utilization: Trends Over Time</strong></th>
<th><strong>Universal Design</strong></th>
</tr>
</thead>
<tbody>
<tr class="odd">
<td><strong>Social Security</strong></td>
<td>Social Security Act of 1935</td>
<td>Social Security Administration (SSA)</td>
<td>Retired workers (62+)</td>
<td>Replace lost earnings due to retirement</td>
<td>Yes</td>
<td>N/A</td>
<td>No</td>
<td>Direct payments with unrestricted use</td>
<td>No</td>
<td><p>FY 03 $330,606,100,000 FY 04 est $345,573,400,000</p>
<p>FY 05 est</p>
<p>$354,307,700,000</p>
<p>2003 enrollees 32,408,700</p>
<p>2004 est enrollees</p>
<p>32,749,900</p>
<p>2005 est enrollees</p>
<p>33,136,400</p></td>
<td>N/A</td>
</tr>
<tr class="even">
<td><strong>Supplemental Security Income (SSI)</strong></td>
<td>Social Security Act of 1935, Title XVI</td>
<td>SSA</td>
<td>Means test, 65+, or qualified disabled</td>
<td>Ensure minimum level of income</td>
<td>Yes</td>
<td>N/A</td>
<td>Some states supplement</td>
<td>Direct payments—nonrestricted</td>
<td>No</td>
<td><p>FY 03</p>
<p>$32,535,000,000</p>
<p>FY 04 est $34,285,000,000</p>
<p>FY 05 est</p>
<p>$38,363,000,000</p>
<p>2003 enrollees</p>
<p>6,553,000</p>
<p>2004 est enrollees</p>
<p>6,711,000</p>
<p>2005 est enrollees</p>
<p>6,867,000</p></td>
<td>N/A</td>
</tr>
<tr class="odd">
<td><strong>Social Security Disability Insurance (SSDI)</strong></td>
<td>Social Security Act of 1935, Title II</td>
<td>SSA</td>
<td>Qualified disabled workers under full retirement age</td>
<td>Ensure minimum level of income</td>
<td>Yes</td>
<td>N/A</td>
<td>Yes</td>
<td>Direct payments—nonrestricted</td>
<td>No</td>
<td><p>FY 03</p>
<p>$69,788,000,000<br />
FY 04 est $76,639,000,000</p>
<p>FY 05 est</p>
<p>$81,821,000,000</p>
<p>2003 enrollees</p>
<p>7,330,000</p>
<p>2004 est enrollees</p>
<p>7,664,000</p>
<p>2005 est enrollees</p>
<p>7,996,000</p></td>
<td>N/A</td>
</tr>
<tr class="even">
<td colspan="12"><em>Source:</em> Catalog of Federal Domestic
Assistance. General Services Administration, Office of Governmentwide
Policy, Office of Acquisition Policy, Regulatory and Federal Assistance
Publication Division. <a href="http://www.cfda.gov/">www.cfda.gov</a>,
accessed June 2005.</td>
</tr>
</tbody>
</table>

**Table 4. Federal Housing Programs**

<table>
<colgroup>
<col style="width: 11%" />
<col style="width: 5%" />
<col style="width: 7%" />
<col style="width: 10%" />
<col style="width: 11%" />
<col style="width: 5%" />
<col style="width: 7%" />
<col style="width: 5%" />
<col style="width: 11%" />
<col style="width: 5%" />
<col style="width: 11%" />
<col style="width: 5%" />
</colgroup>
<thead>
<tr class="header">
<th><strong>Domains And Programs</strong></th>
<th><strong>Year Authorized</strong></th>
<th><strong>Responsible Agency</strong></th>
<th><strong>Eligibility</strong></th>
<th><strong>Scope Of Service</strong></th>
<th><strong>Consumer Direction</strong></th>
<th><strong>Consumer-Perspective Quality</strong></th>
<th><strong>State/ Local Partners</strong></th>
<th><strong>Financing Mechanism</strong></th>
<th><strong>Innovation Or Systems Change</strong></th>
<th><strong>Utilization: Trends Over Time</strong></th>
<th><strong>Universal Design</strong></th>
</tr>
</thead>
<tbody>
<tr class="odd">
<td><strong>Housing and Urban Development (HUD) 811</strong></td>
<td>2000</td>
<td>HUD</td>
<td>Disability/18+ /means test</td>
<td><p>Supportive housing for people with disabilities,</p>
<p>group homes,</p>
<p>apartments,</p>
<p>cooperatives</p></td>
<td>No</td>
<td>No</td>
<td>Local</td>
<td>Formula and competitive grants for local nonprofit sponsors</td>
<td>No</td>
<td><p>FY 03 $250,515,000</p>
<p>FY 04 est $250,570,000</p>
<p>FY 05 est</p>
<p>$248,700,000</p>
<p>FY 2003</p>
<p>Funded 1,484 units</p>
<p>FY 2004</p>
<p>Anticipate similar level of funding</p></td>
<td>Varies</td>
</tr>
<tr class="even">
<td><strong>HUD 202</strong></td>
<td>1959</td>
<td>HUD</td>
<td>62+/means test</td>
<td><p>Supportive housing for people who are aging,</p>
<p>congregate living</p></td>
<td>No</td>
<td>No</td>
<td>Local</td>
<td>Formula and competitive grants for local nonprofit sponsors</td>
<td>No</td>
<td><p>FY 03 $783,286,000</p>
<p>FY 04 est $778,320,000</p>
<p>FY 05 est</p>
<p>$773,320,000</p>
<p>FY 2003</p>
<p>Funded 5,980 units</p>
<p>FY 2004</p>
<p>Anticipate similar</p>
<p>level of funding</p></td>
<td>Varies</td>
</tr>
<tr class="odd">
<td><strong>HOME</strong></td>
<td>1990</td>
<td>HUD</td>
<td>Means test individuals and families</td>
<td>Grants to state/cities for affordable housing development and
rehabilitation</td>
<td>No</td>
<td>No</td>
<td>Yes</td>
<td>Block grants to state and large MSAs 80/20 funding mix</td>
<td>Yes</td>
<td><p>FY 03 $1,946,167,500 FY 04 est $1,963,745,140</p>
<p>FY 05 est</p>
<p>$2,082,000,000</p>
<p>As of 9-30-03, 758,504 units committed; 491,482 units were completed;
and 92,286 families received tenant-based rental assistance</p></td>
<td>No</td>
</tr>
<tr class="even">
<td><strong>Community Development Block Grant (CDBG)</strong></td>
<td>1974</td>
<td>HUD</td>
<td>Means test individuals and families</td>
<td>Grants to state/cities for housing and community development</td>
<td>No</td>
<td>No</td>
<td>Yes</td>
<td>Block grant to state and large MSAs</td>
<td>No</td>
<td><p>FY 03</p>
<p>$3,037,677,000</p>
<p>FY 04 est</p>
<p>$3,031,592,000</p>
<p>FY 05 est</p>
<p>$3,026,721,000</p>
<p>FY 2004</p>
<p>Approx 1,100 units of local government eligible to receive
grants</p></td>
<td>No</td>
</tr>
<tr class="odd">
<td><strong>HOPE VI</strong></td>
<td>1995</td>
<td>HUD</td>
<td><p>Means test</p>
<p>eligible for public housing</p></td>
<td>Affordable redevelopment of public housing</td>
<td>No</td>
<td>No</td>
<td>Yes</td>
<td>Grants to public housing authorities</td>
<td>Yes</td>
<td><p>FY 03</p>
<p>$595,144,000</p>
<p>FY 04</p>
<p>567,530,000</p>
<p>FY 05</p>
<p>141,000,000</p></td>
<td>Yes</td>
</tr>
<tr class="even">
<td><strong>Housing Opportunities for Persons with AIDS
(HOPWA)</strong></td>
<td>1992</td>
<td>HUD</td>
<td>Means test for people living with HIV/AIDS</td>
<td>Supportive housing/services for people with AIDS and coresident
family members</td>
<td>No</td>
<td>No</td>
<td>Yes</td>
<td>Grants to states</td>
<td>Yes</td>
<td><p>FY 03 $290,102,000</p>
<p>FY 04 $294,751,000</p>
<p>FY 05 est</p>
<p>$294,751,000</p></td>
<td>No</td>
</tr>
<tr class="odd">
<td><p><strong>Continuum of Care Program (COC):</strong></p>
<p>Supportive Housing Program, Shelter Plus Care, Single-Room Occupancy
(competitive)</p>
<p>and Emergency Shelter Grants (ESG) (noncompetitive)</p></td>
<td>1996</td>
<td>HUD</td>
<td>Homeless individuals and others eligible for transitional housing
services</td>
<td>Development of housing and supportive services for homeless
individuals and families</td>
<td>No</td>
<td>No</td>
<td>Yes</td>
<td>Grants to states</td>
<td>Yes</td>
<td><p>FY 02 $969,000,000 (COC)</p>
<p>$150,000,000 (ESG)</p>
<p>FY 03</p>
<p>$1.1 billion (COC)</p>
<p>$159,000,000 (ESG)</p></td>
<td>No</td>
</tr>
<tr class="even">
<td><strong>Section 8 Housing Choice Voucher Program</strong></td>
<td>1975</td>
<td>HUD</td>
<td>Means test</td>
<td>Rental assistance to low-income families, elderly, and people with
disabilities</td>
<td>Yes</td>
<td>No</td>
<td>Yes</td>
<td>Grants to states and local housing agencies</td>
<td>No</td>
<td><p>FY 03 $11,272,905,390 FY 04 est $14,712,340,909</p>
<p>FY 05 est</p>
<p>$13,339,000,000</p>
<p>FY 2003</p>
<p>Approx 2,077,000 vouchers available</p>
<p>FY 2004 est</p>
<p>2,100,000 vouchers</p></td>
<td>No</td>
</tr>
<tr class="odd">
<td><strong>Family Self-Sufficiency (FSS) Program</strong></td>
<td>1990</td>
<td>HUD</td>
<td>Families who receive assistance under the housing choice voucher
program are eligible to participate in the FSS program.</td>
<td>Encourages communities to develop local strategies to help assisted
families obtain employment that will lead to economic independence and
self-sufficiency.</td>
<td>Yes</td>
<td>Yes</td>
<td>Yes</td>
<td>No specific funding is provided by HUD. Public Housing Authorities
(PHAs) that administer a FSS program will provide opportunities for
families participating in the housing choice voucher program to also
receive assistance under the FSS program</td>
<td>Yes</td>
<td>N/A</td>
<td>No</td>
</tr>
<tr class="even">
<td><strong>Section 502 Rural Housing Service</strong></td>
<td>1949</td>
<td>U.S. Department of Agriculture (USDA)</td>
<td><p>Means test for</p>
<p>individuals and families at low incomes</p></td>
<td>Direct and guaranteed loans to build, buy, or improve applicant’s
permanent residence</td>
<td>Yes</td>
<td>No</td>
<td>Yes</td>
<td>Formula</td>
<td>No</td>
<td><p>Direct Loans<br />
FY 03</p>
<p>$1,037,864,233</p>
<p>FY 04 est</p>
<p>$1,351,392,000</p>
<p>FY 05 est</p>
<p>$1,100,000,000</p>
<p>Guaranteed Loans</p>
<p>FY 03</p>
<p>$3,086,764,226</p>
<p>FY 04 est</p>
<p>$3,123,000,000</p>
<p>FY 05 est</p>
<p>$2,715,000,000</p>
<p>FY 2002</p>
<p>Total of 14,727 new direct loans and 29,218 guaranteed loans were
made</p></td>
<td>No</td>
</tr>
<tr class="odd">
<td colspan="12"><em>Source:</em> Catalog of Federal Domestic
Assistance. General Services Administration, Office of Governmentwide
Policy, Office of Acquisition Policy, Regulatory and Federal Assistance
Publication Division. <a href="http://www.cfda.gov/">www.cfda.gov</a>,
accessed June 2005.</td>
</tr>
</tbody>
</table>

**Table 5. Federal Transportation Programs**

<table>
<colgroup>
<col style="width: 11%" />
<col style="width: 5%" />
<col style="width: 11%" />
<col style="width: 10%" />
<col style="width: 9%" />
<col style="width: 5%" />
<col style="width: 6%" />
<col style="width: 5%" />
<col style="width: 10%" />
<col style="width: 6%" />
<col style="width: 11%" />
<col style="width: 5%" />
</colgroup>
<thead>
<tr class="header">
<th><strong>Domains and Programs</strong></th>
<th><strong>Year Authorized</strong></th>
<th><strong>Responsible Agency</strong></th>
<th><strong>Eligibility</strong></th>
<th><strong>Scope of Service</strong></th>
<th><strong>Consumer Direction</strong></th>
<th><strong>Consumer-Perspective Quality</strong></th>
<th><strong>State/ Local Partners</strong></th>
<th><strong>Financing Mechanism</strong></th>
<th><strong>Innovation Or Systems Change</strong></th>
<th><strong>Utilization: Trends Over Time</strong></th>
<th><strong>Universal Design</strong></th>
</tr>
</thead>
<tbody>
<tr class="odd">
<td><strong>Capital Assistance Program for Elderly Persons and Persons
with Disabilities Section 5310</strong></td>
<td>1975</td>
<td><p>Federal Transit Administration (FTA)/<br />
Department of Transportation</p>
<p>(DOT)</p></td>
<td><p>Elderly/</p>
<p>disabled</p></td>
<td>Provide efficient and coordinated specialized transport</td>
<td>No</td>
<td>No</td>
<td>Yes</td>
<td>Formula grants</td>
<td>No</td>
<td><p>FY 03</p>
<p>$92,901,000</p>
<p>FY 04 est</p>
<p>$98,361,000</p>
<p>FY 05 est</p>
<p>$88,280,000</p></td>
<td>No</td>
</tr>
<tr class="even">
<td><strong>Job Access Reverse Commute Section 5311</strong></td>
<td>1999</td>
<td><p>FTA/</p>
<p>DOT</p></td>
<td><p>Welfare recipients</p>
<p>Low-income people</p></td>
<td>To develop transportation services to connect to employment and
support services</td>
<td>No</td>
<td>No</td>
<td>Yes</td>
<td>Project grants</td>
<td>Yes</td>
<td><p>FY 03 $135,618,000</p>
<p>FY 04 est $153,993,000</p>
<p>FY 05 est</p>
<p>$135,461,000</p>
<p>Services in 45 states plus the District of Columbia have been funded
through more than 300 grants and grant amendments</p></td>
<td>No</td>
</tr>
<tr class="odd">
<td><strong>United We Ride State Coordination Grants</strong></td>
<td>2004</td>
<td><p>FTA/</p>
<p>DOT</p></td>
<td>Transportation-disadvantaged (individuals with low incomes, older
adults, people with disabilities)</td>
<td>To assist states that want to strengthen or jump start efforts to
coordinate human service transportation</td>
<td>No</td>
<td>Yes</td>
<td>Yes</td>
<td>State grants</td>
<td>Yes</td>
<td>The total amount available for grants will be at least $1,000,000
for up to 50 awards. Funding will range from $20,000 to $35,000 per
grant.</td>
<td>Varies</td>
</tr>
<tr class="even">
<td colspan="12"><em>Source:</em> Catalog of Federal Domestic
Assistance. General Services Administration, Office of Governmentwide
Policy, Office of Acquisition Policy, Regulatory and Federal Assistance
Publication Division. <a href="http://www.cfda.gov/">www.cfda.gov</a>,
accessed June 2005.</td>
</tr>
</tbody>
</table>

**Table 6. Federal Nutrition Programs**

<table>
<colgroup>
<col style="width: 12%" />
<col style="width: 8%" />
<col style="width: 11%" />
<col style="width: 9%" />
<col style="width: 12%" />
<col style="width: 5%" />
<col style="width: 5%" />
<col style="width: 4%" />
<col style="width: 9%" />
<col style="width: 4%" />
<col style="width: 12%" />
<col style="width: 4%" />
</colgroup>
<thead>
<tr class="header">
<th><strong>Domains and Programs</strong></th>
<th><strong>Year Authorized</strong></th>
<th><strong>Responsible Agency</strong></th>
<th><strong>Eligibility</strong></th>
<th><strong>Scope Of Service</strong></th>
<th><strong>Consumer Direction</strong></th>
<th><strong>Consumer-Perspective Quality</strong></th>
<th><strong>State/ Local Partners</strong></th>
<th><strong>Financing Mechanism</strong></th>
<th><strong>Innovation Or Systems Change</strong></th>
<th><strong>Utilization: Trends Over Time</strong></th>
<th><strong>Universal Design</strong></th>
</tr>
</thead>
<tbody>
<tr class="odd">
<td><strong>Title III Part C Nutrition Services Elderly Nutrition
Program (ENP)</strong></td>
<td>Older Americans Act 1965</td>
<td>Administration on Aging (AOA) /Department of Health and Human
Services (HHS)</td>
<td>60+ and spouse and coresident disabled</td>
<td>Support to states for nutrition services congregate or in home</td>
<td>No</td>
<td>Yes</td>
<td>Yes</td>
<td>Formula/ matching 85% federal/15% nonfederal</td>
<td>No</td>
<td><p>Congregate</p>
<p>FY 03</p>
<p>$384,591,798</p>
<p>FY 04 est</p>
<p>$386,352,989</p>
<p>FY 05 est</p>
<p>$388,646,000</p>
<p>Home delivered</p>
<p>FY 03</p>
<p>$180,984,902</p>
<p>FY 04 est</p>
<p>$179,917,188</p>
<p>FY 05 est</p>
<p>$180,985,000</p>
<p>FY 2003</p>
<p>56 grants</p>
<p>FY 2004/05 est</p>
<p>56 grants</p></td>
<td>No</td>
</tr>
<tr class="even">
<td><strong>Senior Farmers’ Market Nutrition Program
(SFMNP)</strong></td>
<td>2002</td>
<td>USDA</td>
<td>60+/ means tested</td>
<td>Support to states for low-income elders to buy fresh food at
farmers’ markets and roadside stands</td>
<td>Yes</td>
<td>No</td>
<td>Yes</td>
<td>Grants to states</td>
<td>Yes</td>
<td><p>FY 03</p>
<p>$0</p>
<p>FY 04</p>
<p>$0</p>
<p>FY 05 est</p>
<p>$20,000,000</p>
<p>FY 2003</p>
<p>Grant levels to state agencies totaled $16.8 million, including $1.8
million in unspent funds from FY 2002.</p></td>
<td>No</td>
</tr>
<tr class="odd">
<td><strong>Food Stamps Reauthorization Act</strong></td>
<td>2002</td>
<td>USDA</td>
<td>60+ or SSI disabled, means tested</td>
<td>Nutrition-related assistance</td>
<td>Yes</td>
<td>Yes</td>
<td>Yes</td>
<td>Grants to states</td>
<td>Yes</td>
<td><p>Direct Payments</p>
<p>FY 03</p>
<p>$24,606,021,000</p>
<p>FY 04 est</p>
<p>$29,301,274,000</p>
<p>FY 05 est</p>
<p>$31,976,563,000</p></td>
<td>No</td>
</tr>
<tr class="even">
<td colspan="12"><em>Source:</em> Catalog of Federal Domestic
Assistance. General Services Administration, Office of Governmentwide
Policy, Office of Acquisition Policy, Regulatory and Federal Assistance
Publication Division. <a href="http://www.cfda.gov/">www.cfda.gov</a>,
accessed June 2005.</td>
</tr>
</tbody>
</table>

**Table 7. Federal Assistive Technology Programs**

<table>
<colgroup>
<col style="width: 9%" />
<col style="width: 9%" />
<col style="width: 12%" />
<col style="width: 8%" />
<col style="width: 12%" />
<col style="width: 4%" />
<col style="width: 5%" />
<col style="width: 4%" />
<col style="width: 11%" />
<col style="width: 4%" />
<col style="width: 12%" />
<col style="width: 4%" />
</colgroup>
<thead>
<tr class="header">
<th><strong>Domains and Programs</strong></th>
<th><strong>Year Authorized</strong></th>
<th><strong>Responsible Agency</strong></th>
<th><strong>Eligibility</strong></th>
<th><strong>Scope of Service</strong></th>
<th><strong>Consumer Direction</strong></th>
<th><strong>Consumer-Perspective Quality</strong></th>
<th><strong>State/ Local Partners</strong></th>
<th><strong>Financing Mechanism</strong></th>
<th><strong>Innovation Or Systems Change</strong></th>
<th><strong>Utilization: Trends Over Time</strong></th>
<th><strong>Universal Design</strong></th>
</tr>
</thead>
<tbody>
<tr class="odd">
<td><strong>Assistive Technology Act of 1998</strong></td>
<td>1998, reauthorized 2004</td>
<td><p>The Office of the Assistant Secretary for Special Education and
Rehabilitative Services</p>
<p>Department of Education</p></td>
<td>Individuals with disabilities</td>
<td>States may provide assistance to statewide community-based
organizations or directly to individuals with disabilities of all
ages</td>
<td>No</td>
<td>Yes</td>
<td>Yes</td>
<td><p>Project grants (discretionary)</p>
<p>Project grants (contracts)</p></td>
<td>No</td>
<td><p>FY 03</p>
<p>$26,227,000</p>
<p>FY 04 est</p>
<p>$25,943,000</p>
<p>FY 05 $21,524,000 FY 2003</p>
<p>26 awards were made</p></td>
<td>Yes</td>
</tr>
<tr class="even">
<td colspan="12"><em>Source:</em> Catalog of Federal Domestic
Assistance. General Services Administration, Office of Governmentwide
Policy, Office of Acquisition Policy, Regulatory and Federal Assistance
Publication Division. <a href="http://www.cfda.gov/">www.cfda.gov</a>,
accessed June 2005.</td>
</tr>
</tbody>
</table>

> **Table 8. Federal Caregiver Support Programs**

<table>
<colgroup>
<col style="width: 8%" />
<col style="width: 9%" />
<col style="width: 11%" />
<col style="width: 10%" />
<col style="width: 9%" />
<col style="width: 6%" />
<col style="width: 6%" />
<col style="width: 4%" />
<col style="width: 9%" />
<col style="width: 4%" />
<col style="width: 10%" />
<col style="width: 6%" />
</colgroup>
<tbody>
<tr class="odd">
<td><strong>Domains and Programs</strong></td>
<td><strong>Year Authorized</strong></td>
<td><strong>Responsible Agency</strong></td>
<td><strong>Eligibility</strong></td>
<td><strong>Scope of Service</strong></td>
<td><strong>Consumer Direction</strong></td>
<td><strong>Consumer-Perspective Quality</strong></td>
<td><strong>State/ Local Partners</strong></td>
<td><strong>Financing Mechanism</strong></td>
<td><strong>Innovation Or Systems Change</strong></td>
<td><strong>Utilization: Trends Over Time</strong></td>
<td><strong>Universal Design</strong></td>
</tr>
<tr class="even">
<td><strong>National Family Caregiver Support</strong></td>
<td>Older Americans Act, as amended, Title III, Part E and VI, Part
C.</td>
<td>Administration on Aging</td>
<td>Family caregivers, grandparents, and older individuals who are
relative caregivers</td>
<td>Information and referral, respite, training</td>
<td>Varies</td>
<td>Varies</td>
<td>Yes</td>
<td><p>Formula grants</p>
<p>75% federal and 25% nonfederal</p></td>
<td>Yes</td>
<td><p>FY 03</p>
<p>$155,234,375 FY 04 est</p>
<p>$159,056,000</p>
<p>FY 05 est</p>
<p>$161,867,000</p></td>
<td>Varies</td>
</tr>
<tr class="odd">
<td colspan="12"><em>Source:</em> Catalog of Federal Domestic
Assistance. General Services Administration, Office of Governmentwide
Policy, Office of Acquisition Policy, Regulatory and Federal Assistance
Publication Division. <a href="http://www.cfda.gov/">www.cfda.gov</a>,
accessed June 2005.</td>
</tr>
</tbody>
</table>

# APPENDIX 1.G Congressional Oversight of Federal Programs

**Federal Health Care Programs**

  ------------------------------------------------------------------------------------------------------------------------------------------------
  **Program Name**  **Purpose**             **Act\***       **Senate**                         **House of                             **Agency,
                                            *Original Act                                      Representatives**                      Office**
                                            or most recent                                                                            
                                            Congressional                                                                             
                                            activity*                                                                                 
  ----------------- ----------------------- --------------- --------------- ------------------ ------------------- ------------------ ------------
                                                            **Committee**   **Subcommittee**   **Committee**       **Subcommittee**   

  **Medicare (Part  To provide hospital     Social Security Committee on    \(1\) Health Care, Committee on Ways   \(1\) Health, (2)  Department
  A) (Medicare      insurance protection    Act Amendments  Finance         (2) Social         and Means           Social Security    of Health
  Hospital          for covered services to of 1965, Title                  Security and                                              and Human
  Insurance)**      people age 65 or above, XVIII, Part A,                  Family Protection                                         Services,
                    to certain disabled     P.L. 89-97                                                                                Centers for
                    people, and to                                                                                                    Medicare and
                    individuals with                                                                                                  Medicaid
                    chronic renal disease.                                                                                            Services

  **Medicare (Part  To provide medical      Social Security Committee on    \(1\) Health Care, Committee on Ways   \(1\) Health, (2)  Department
  B) (Medicare      insurance protection    Act Amendments  Finance         (2) Social         and Means           Social Security    of Health
  Supplementary     for covered services to of 1965, Title                  Security and                                              and Human
  Medical           people age 65 or over,  XVIII, Part B,                  Family Protection                                         Services,
  Insurance)**      to certain disabled     P.L. 89-97                                                                                Centers for
                    people, and to                                                                                                    Medicare and
                    individuals with                                                                                                  Medicaid
                    end-stage renal disease                                                                                           Services
                    who elect this                                                                                                    
                    coverage.                                                                                                         

  **Medicare (Part  Under Part D of the     Medicare        Committee on    \(1\) Health Care, Committee on Ways   \(1\) Health, (2)  Department
  D)**              Social Security Act,    Prescription    Finance         (2) Social         and Means           Social Security    of Health
                    the Medicare program    Drug,                           Security and                                              and Human
                    includes a voluntary    Improvement,                    Family Protection                                         Services,
                    prescription drug       and                                                                                       Centers for
                    benefit. Beneficiaries  Modernization                                                                             Medicare and
                    entitled to Part A and  Act of 2003 (P.                                                                           Medicaid
                    enrolled in Part B,     L. No. 108-173,                                                                           Services
                    enrollees in Medicare   117 Stat. 2066,                                                                           
                    Advantage private       codified at 42                                                                            
                    fee-for-service plans,  U.S.C. sec.                                                                               
                    and enrollees in        1395w-101)                                                                                
                    Medicare Savings                                                                                                  
                    Account Plans will be                                                                                             
                    eligible for the                                                                                                  
                    prescription drug                                                                                                 
                    benefit. The                                                                                                      
                    prescription drug                                                                                                 
                    benefit is available to                                                                                           
                    eligible individuals                                                                                              
                    beginning January 1,                                                                                              
                    2006.                                                                                                             

  **Medicaid**      To provide financial    Medicaid Act    Committee on    \(1\) Health Care, \(1\) Committee on  Ways and Means:    Department
                    assistance to states    (Aug. 14, 1935, Finance         (2) Social         Ways and Means (2)  (1) Health, (2)    of Health
                    for payments of medical ch. 531, Title                  Security and       Committee on Energy Social Security;   and Human
                    assistance on behalf of XIX, as added                   Family Protection  and Commerce        Energy and         Services,
                    cash assistance         July 30, 1965,                                                         Commerce:          Centers for
                    recipients, children,   P.L. 89-97,                                                            Subcommittee on    Medicare and
                    pregnant women, and the Title I, §                                                             Health             Medicaid
                    aged who meet income    121(a), 79                                                                                Services
                    and resource            Stat. 343)                                                                                
                    requirements, and other                                                                                           
                    categorically eligible                                                                                            
                    groups. In certain                                                                                                
                    states that elect to                                                                                              
                    provide such coverage,                                                                                            
                    medically needy people,                                                                                           
                    who, except for income                                                                                            
                    and resources, would be                                                                                           
                    eligible for cash                                                                                                 
                    assistance, may be                                                                                                
                    eligible for medical                                                                                              
                    assistance payments                                                                                               
                    under this program.                                                                                               
                    Financial assistance is                                                                                           
                    provided to states to                                                                                             
                    pay for Medicare                                                                                                  
                    premiums, copayments,                                                                                             
                    and deductibles of                                                                                                
                    qualified Medicare                                                                                                
                    beneficiaries meeting                                                                                             
                    certain income                                                                                                    
                    requirements. More                                                                                                
                    limited financial                                                                                                 
                    assistance is available                                                                                           
                    for certain Medicare                                                                                              
                    beneficiaries with                                                                                                
                    higher incomes.                                                                                                   

  **Medicaid, Home- Program gives states    Social Security Committee on    \(1\) Health Care, \(1\) Committee on  Ways and Means:    Department
  and               flexibility to design   Act (Aug. 14,   Finance         (2) Social         Ways and Means, (2) (1) Health, (2)    of Health
  Community-Based   programs to meet the    1935, c. 531,                   Security and       Committee on Energy Social Security;   and Human
  Services (HCBS)   specific needs of       Title XIX, §                    Family Protection  and Commerce        Energy and         Services,
  Waiver**          defined groups. States  1915, as added                                                         Commerce:          Centers for
                    may create programs to  and amended                                                            Subcommittee on    Medicare and
                    serve the elderly,      Aug. 13, 1981,                                                         Health             Medicaid
                    people with physical    P.L. 97-35,                                                                               Services
                    disabilities,           Title XXI, §§                                                                             
                    developmental           2175(b), 2176,                                                                            
                    disabilities, mental    2177(a)),                                                                                 
                    retardation, or mental  Medicare and                                                                              
                    illness. States may     Medicaid                                                                                  
                    also target programs by Amendments of                                                                             
                    specific illness or     1981 (P.L.                                                                                
                    condition as well as    97-35, Title                                                                              
                    people with acquired or XXI, Aug. 13,                                                                             
                    traumatic brain injury. 1981, 95 Stat.                                                                            
                    States can make home-   783) (codified                                                                            
                    and community-based     at 42 U.S.C.                                                                              
                    services available to   sec. 1396n)                                                                               
                    individuals who would                                                                                             
                    otherwise qualify for                                                                                             
                    Medicaid only if they                                                                                             
                    were in an                                                                                                        
                    institutional setting.                                                                                            
                    States may offer a                                                                                                
                    variety of services to                                                                                            
                    participants under an                                                                                             
                    HCBS waiver program and                                                                                           
                    are not limited to the                                                                                            
                    number of services that                                                                                           
                    can be provided. States                                                                                           
                    may use an HCBS waiver                                                                                            
                    program to provide a                                                                                              
                    combination of both                                                                                               
                    traditional medical                                                                                               
                    services as well as                                                                                               
                    nonmedical services.                                                                                              
                    There are no specific                                                                                             
                    services that must be                                                                                             
                    offered in an HCBS                                                                                                
                    waiver program. There                                                                                             
                    is no limit on the                                                                                                
                    number of services that                                                                                           
                    can be offered under a                                                                                            
                    single waiver program                                                                                             
                    as long as the waiver                                                                                             
                    retains cost-neutrality                                                                                           
                    and the services are                                                                                              
                    necessary to avoid                                                                                                
                    institutionalization.                                                                                             
  ------------------------------------------------------------------------------------------------------------------------------------------------

**Social Support, Personal Assistance Services, Home Care**

  -------------------------------------------------------------------------------------------------------------------------------------------------------------
  **Program Name**  **Purpose**                     **Act\***        **Senate**                         **House of                             **Agency,
                                                    *Original Act*                                      Representatives**                      Office**
  ----------------- ----------------- ------------- ---------------- --------------- ------------------ ------------------- ------------------ ----------------
                                                                     **Committee**   **Subcommittee**   **Committee**       **Subcommittee**   

  **Independent     To assist states                Rehabilitation   Committee on    Varies             Committee on        Varies             Department of
  Living State      in maximizing the               Act of 1973, as  Health,                            Education and the                      Education,
  Grants**          leadership,                     amended, Title   Education,                         Workforce                              Office of the
                    empowerment,                    VII, Chapter 1,  Labor, and                                                                Assistant
                    independence, and               Part B, 29       Pensions                                                                  Secretary for
                    productivity of                 U.S.C.                                                                                     Special
                    individuals with                796a-796e-3.                                                                               Education and
                    disabilities, and                                                                                                          Rehabilitative
                    the integration                                                                                                            Services
                    and full                                                                                                                   
                    inclusion of                                                                                                               
                    individuals with                                                                                                           
                    disabilities into                                                                                                          
                    the mainstream                                                                                                             
                    American society,                                                                                                          
                    by providing                                                                                                               
                    financial                                                                                                                  
                    assistance for                                                                                                             
                    providing,                                                                                                                 
                    expanding, and                                                                                                             
                    improving the                                                                                                              
                    provision of                                                                                                               
                    independent                                                                                                                
                    living services.                                                                                                           

  **Centers for     The program                     Rehabilitation   Committee on    Varies             Committee on        Varies             Department of
  Independent       awards grants to                Act of 1973, as  Health,                            Education and the                      Education,
  Living**          locally run                     amended, Title   Education,                         Workforce                              Office of the
                    nonprofit                       VII, Chapter 1,  Labor, and                                                                Assistant
                    agencies that are               Part B, 29       Pensions                                                                  Secretary for
                    operated by                     U.S.C.                                                                                     Special
                    individuals with                796a-796e-3.                                                                               Education and
                    disabilities and                                                                                                           Rehabilitative
                    that offer                                                                                                                 Services
                    independent                                                                                                                
                    living services                                                                                                            
                    that include (1)                                                                                                           
                    information and                                                                                                            
                    referral, (2)                                                                                                              
                    independent                                                                                                                
                    living skills                                                                                                              
                    training, (3)                                                                                                              
                    peer counseling,                                                                                                           
                    and (4)                                                                                                                    
                    individual and                                                                                                             
                    systems advocacy.                                                                                                          

  **Special         Grants are made                 Older Americans  Committee on    Varies             \(1\) Committee on  Varies             Department of
  Programs for the  to any public or                Act of 1965,     Health,                            Education and the                      Health and Human
  Aging:            nonprofit private               P.L. 89-73, July Education,                         Workforce, (2)                         Services,
  Discretionary     agency,                         14, 1965, 79     Labor, and                         Energy and Commerce                    Administration
  Projects**        organization, or                Stat. 218,       Pensions                                                                  on Aging
                    institution.                    codified at 42                                                                             
                    These funds may                 U.S.C. sec. 3001                                                                           
                    be used to (1)                                                                                                             
                    demonstrate new                                                                                                            
                    methods and                                                                                                                
                    practices to                                                                                                               
                    improve the                                                                                                                
                    quality and                                                                                                                
                    effectiveness of                                                                                                           
                    programs and                                                                                                               
                    services, (2)                                                                                                              
                    evaluate existing                                                                                                          
                    programs and                                                                                                               
                    services, and (3)                                                                                                          
                    conduct applied                                                                                                            
                    research and                                                                                                               
                    analysis to                                                                                                                
                    improve access to                                                                                                          
                    and delivery of                                                                                                            
                    services to train                                                                                                          
                    professionals in                                                                                                           
                    the field.                                                                                                                 

  **Special         Funds are awarded               Older Americans  Committee on    Varies             \(1\) Committee on  Varies             Department of
  Programs for the  to states to                    Act of 1965,     Health,                            Education and the                      Health and Human
  Aging: Grants for develop and                     P.L. 89-73, July Education,                         Workforce, (2)                         Services,
  Supportive        strengthen                      14, 1965, 79     Labor, and                         Energy and Commerce                    Administration
  Services and      comprehensive and               Stat. 218,       Pensions                                                                  on Aging
  Senior Centers**  coordinated                     codified at 42                                                                             
                    service delivery                U.S.C. sec. 3001                                                                           
                    systems through                                                                                                            
                    designated state                                                                                                           
                    Agencies on Aging                                                                                                          
                    and area Agencies                                                                                                          
                    on Aging. In                                                                                                               
                    addition to                                                                                                                
                    supportive                                                                                                                 
                    nutrition                                                                                                                  
                    services, these                                                                                                            
                    may be used to                                                                                                             
                    support other                                                                                                              
                    services,                                                                                                                  
                    including                                                                                                                  
                    renovation,                                                                                                                
                    acquisition and                                                                                                            
                    alteration, and                                                                                                            
                    construction of                                                                                                            
                    multipurpose                                                                                                               
                    senior centers.                                                                                                            
                    The objective of                                                                                                           
                    these services                                                                                                             
                    and centers is to                                                                                                          
                    maximize the                                                                                                               
                    informal support                                                                                                           
                    provided to older                                                                                                          
                    Americans to                                                                                                               
                    enable them to                                                                                                             
                    remain in their                                                                                                            
                    homes and                                                                                                                  
                    communities.                                                                                                               
                    Providing                                                                                                                  
                    transportation                                                                                                             
                    services, in-home                                                                                                          
                    services, and                                                                                                              
                    caregiver support                                                                                                          
                    services, this                                                                                                             
                    program ensures                                                                                                            
                    that elders                                                                                                                
                    receive the                                                                                                                
                    services they                                                                                                              
                    need to remain                                                                                                             
                    independent.                                                                                                               

  **Senior          The program                     Domestic         Committee on    Varies             Committee on        Varies             Federal Agency
  Companion         provides                        Volunteer        Health,                            Education and the                      Corporation for
  Program**         stipends,                       Service Act of   Education,                         Workforce                              National and
                    transportation,                 1973 (Volunteers Labor, and                                                                Community
                    physical                        in Service to    Pensions                                                                  Service
                    examinations,                   America) (VISTA)                                                                           
                    insurance, and                  (P.L. 93-113,                                                                              
                    meals for their                 Oct. 1, 1973, 87                                                                           
                    volunteers.                     Stat. 394)                                                                                 
                    Assignment of                   (codified at 42                                                                            
                    Senior Companions               U.S.C. sec.                                                                                
                    to adults may                   4950)                                                                                      
                    occur in                                                                                                                   
                    residential and                                                                                                            
                    nonresidential                                                                                                             
                    facilities and in                                                                                                          
                    their own homes.                                                                                                           

  **Medicaid Home-  Program gives                   Social Security  Committee on    \(1\) Health Care, \(1\) Committee on  Ways and Means:    Department of
  and               states                          Act (Aug. 14,    Finance         (2) Social         Ways and Means, (2) (1) Health, (2)    Health and Human
  Community-Based   flexibility to                  1935, c. 531,                    Security and       Committee on Energy Social Security;   Services,
  Services (HCBS)   design programs                 Title XIX, §                     Family Protection  and Commerce        Energy and         Centers for
  Waiver**          to meet the                     1915, as added                                                          Commerce:          Medicare and
                    specific needs of               and amended Aug.                                                        Subcommittee on    Medicaid
                    defined groups.                 13, 1981, P.L.                                                          Health             Services
                    States may create               97-35, Title                                                                               
                    programs to serve               XXI, §§ 2175(b),                                                                           
                    the elderly,                    2176, 2177(a)),                                                                            
                    people with                     Medicare and                                                                               
                    physical                        Medicaid                                                                                   
                    disabilities,                   Amendments of                                                                              
                    developmental                   1981 (P.L.                                                                                 
                    disabilities,                   97-35, Title                                                                               
                    mental                          XXI, Aug. 13,                                                                              
                    retardation or                  1981, 95 Stat.                                                                             
                    mental illness.                 783) (codified                                                                             
                    States may also                 at 42 U.S.C.                                                                               
                    target programs                 sec. 1396n)                                                                                
                    by specific                                                                                                                
                    illness or                                                                                                                 
                    condition as well                                                                                                          
                    as people with                                                                                                             
                    acquired or                                                                                                                
                    traumatic brain                                                                                                            
                    injury. States                                                                                                             
                    can make home-                                                                                                             
                    and                                                                                                                        
                    community-based                                                                                                            
                    services                                                                                                                   
                    available to                                                                                                               
                    individuals who                                                                                                            
                    would otherwise                                                                                                            
                    qualify for                                                                                                                
                    Medicaid only if                                                                                                           
                    they were in an                                                                                                            
                    institutional                                                                                                              
                    setting. States                                                                                                            
                    may offer a                                                                                                                
                    variety of                                                                                                                 
                    services to                                                                                                                
                    participants                                                                                                               
                    under an HCBS                                                                                                              
                    waiver program                                                                                                             
                    and are not                                                                                                                
                    limited to the                                                                                                             
                    number of                                                                                                                  
                    services that can                                                                                                          
                    be provided.                                                                                                               
                    States may use an                                                                                                          
                    HCBS waiver                                                                                                                
                    program to                                                                                                                 
                    provide a                                                                                                                  
                    combination of                                                                                                             
                    both traditional                                                                                                           
                    medical services                                                                                                           
                    as well as                                                                                                                 
                    nonmedical                                                                                                                 
                    services. There                                                                                                            
                    are no specific                                                                                                            
                    services that                                                                                                              
                    must be offered                                                                                                            
                    in an HCBS waiver                                                                                                          
                    program.                                                                                                                   

  **Social Services                                 Social Security  Varies          Varies             Varies              Varies             Department of
  Block Grant**                                     Act, Title XX,                                                                             Health and Human
                                                    as amended;                                                                                Services,
                                                    Omnibus Budget                                                                             Administration
                                                    Reconciliation                                                                             for Children and
                                                    Act of 1981                                                                                Families
                                                    (P.L. 97-35)                                                                               
                                                    (codified at 42                                                                            
                                                    U.S.C. sec. 1397                                                                           
                                                    et seq*.*)                                                                                 

  **Social          Enables each      Social                         Committee on    \(1\) Health Care, Committee on Ways   \(1\) Health, (2)  Social Security
  Security**        state, as far as  Security Act                   Finance         (2) Social         and Means           Social Security    Administration
                    practicable under (Old Age                                       Security                                                  
                    the conditions in Pension Act)                                                                                             
                    such state, to    (Aug. 14,                                                                                                
                    furnish financial 1935, ch.                                                                                                
                    assistance to     531, 49 Stat.                                                                                            
                    aged needy        620)                                                                                                     
                    individuals. The  (codified at                                                                                             
                    Social Security   42 U.S.C.                                                                                                
                    Act authorizes to sec. 301 et                                                                                              
                    be appropriated   seq.)                                                                                                    
                    for each fiscal                                                                                                            
                    year a sum                                                                                                                 
                    sufficient to                                                                                                              
                    carry out the                                                                                                              
                    purposes of the                                                                                                            
                    social security                                                                                                            
                    program. The                                                                                                               
                    money made                                                                                                                 
                    available under                                                                                                            
                    the Social                                                                                                                 
                    Security Act is                                                                                                            
                    used for making                                                                                                            
                    payments to                                                                                                                
                    states that have                                                                                                           
                    submitted plans                                                                                                            
                    for old-age                                                                                                                
                    assistance and                                                                                                             
                    had them approved                                                                                                          
                    by the Secretary                                                                                                           
                    of Health and                                                                                                              
                    Human Services.                                                                                                            

  **Supplemental    Establishes a     Social                         Committee on    \(1\) Health Care, Committee on Ways   \(1\) Health, (2)  Social Security
  Security Income** national program  Security Act,                  Finance         (2) Social         and Means           Social Security    Administration
                    to provide        (Old Age                                       Security                                                  
                    Supplemental      Pension Act)                                                                                             
                    Security Income   (Aug. 14,                                                                                                
                    to individuals    1935, ch.                                                                                                
                    who have attained 531, title                                                                                               
                    age 65 or are     XVI, Sec.                                                                                                
                    blind or          1601), as                                                                                                
                    disabled.         added P.L.                                                                                               
                                      92-603,\                                                                                                 
                                      title III,                                                                                               
                                      Sec. 301,                                                                                                
                                      Oct. 30,                                                                                                 
                                      1972, 86                                                                                                 
                                      Stat. 1465                                                                                               
                                      *(*codified                                                                                              
                                      at 42 U.S.C.                                                                                             
                                      sec. 1601 et                                                                                             
                                      seq*.*)                                                                                                  

  **Social Security To replace part   Social                         Committee on    \(1\) Health Care, Committee on Ways   \(1\) Health, (2)  Social Security
  Disability        of the earnings   Security Act                   Finance         (2) Social         and Means           Social Security    Administration
  Insurance**       lost because of a of 1935,                                       Security                                                  
                    physical or       Title II, as                                                                                             
                    mental            amended;                                                                                                 
                    impairment, or a  (P.L. 96-265)                                                                                            
                    combination of    (codified at                                                                                             
                    impairments,      42 U.S.C.                                                                                                
                    severe enough to  sec. 402,                                                                                                
                    prevent a person  416, 420-25)                                                                                             
                    from working.                                                                                                              
  -------------------------------------------------------------------------------------------------------------------------------------------------------------

Federal Housing Programs

  --------------------------------------------------------------------------------------------------------------------------------------------------
  **Program Name**  **Purpose**         **Act\*** *Original **Senate**                         **House of                             **Agency,
                                        Act*                                                   Representatives**                      Office**
  ----------------- ------------------- ------------------- --------------- ------------------ ------------------- ------------------ --------------
                                                            **Committee**   **Subcommittee**   **Committee**       **Subcommittee**   

  **Section 811**   The Section 811     Cranston-Gonzalez   Committee on    Subcommittee on    Committee on        Housing and        Department of
                    program allows      National Affordable Banking,        Housing and        Financial Services  Community          Housing and
                    people with         Housing Act (NAHA)  Housing, and    Transportation                         Opportunity        Urban
                    disabilities to     (P.L. 101-625, Nov. Urban Affairs                                          Subcommittee       Development,
                    live as             28, 1990, 104 Stat.                                                                           Office of
                    independently as    4079) (codified at                                                                            Housing
                    possible in the     42 U.S.C. sec.                                                                                
                    community by        8013)                                                                                         
                    increasing the                                                                                                    
                    supply of rental                                                                                                  
                    housing with the                                                                                                  
                    availability of                                                                                                   
                    supportive                                                                                                        
                    services. The                                                                                                     
                    program also                                                                                                      
                    provides project                                                                                                  
                    rental assistance,                                                                                                
                    which covers the                                                                                                  
                    difference between                                                                                                
                    the HUD-approved                                                                                                  
                    operating costs of                                                                                                
                    the project and the                                                                                               
                    tenants'                                                                                                          
                    contribution toward                                                                                               
                    rent.                                                                                                             

  **Section 202**   The Section 202     Housing Act of 1959 Committee on    Subcommittee on    Committee on        Housing and        Department of
                    program helps       (P.L. 86-372, Sept. Banking,        Housing and        Financial Services  Community          Housing and
                    expand the supply   23, 1959, 73 Stat.  Housing, and    Transportation                         Opportunity        Urban
                    of affordable       654) (codified at   Urban Affairs                                          Subcommittee       Development,
                    housing with        12 U.S.C. sec.                                                                                Office of
                    supportive services 1701q)                                                                                        Housing
                    for the elderly. It                                                                                               
                    provides very                                                                                                     
                    low-income elderly                                                                                                
                    with options that                                                                                                 
                    allow them to live                                                                                                
                    independently but                                                                                                 
                    in an environment                                                                                                 
                    that provides                                                                                                     
                    support activities                                                                                                
                    such as cleaning,                                                                                                 
                    cooking,                                                                                                          
                    transportation,                                                                                                   
                    etc.                                                                                                              

  **HOME Investment HOME provides       Cranston-Gonzalez   Committee on    Subcommittee on    Committee on        Housing and        Department of
  Partnerships      formula grants to   National Affordable Banking,        Housing and        Financial Services  Community          Housing and
  Program**         states and          Housing Act (NAHA), Housing, and    Transportation                         Opportunity        Urban
                    localities that     Title II (P.L.      Urban Affairs                                          Subcommittee       Development,
                    communities         101-625, Nov. 28,                                                                             Community
                    use---often in      1990, 104 Stat.                                                                               Planning, and
                    partnership with    4079) (codified at                                                                            Development
                    local nonprofit     42 U.S.C. sec.                                                                                
                    groups---to fund a  12721)                                                                                        
                    wide range of                                                                                                     
                    activities that                                                                                                   
                    build, buy, and/or                                                                                                
                    rehabilitate                                                                                                      
                    affordable housing                                                                                                
                    for rent or                                                                                                       
                    homeownership or                                                                                                  
                    provide direct                                                                                                    
                    rental assistance                                                                                                 
                    to low-income                                                                                                     
                    people.                                                                                                           

  **Community       To develop viable   Housing and         Committee on    Subcommittee on    Committee on        Housing and        Department of
  Development Block urban communities,  Community           Banking,        Housing and        Financial Services  Community          Housing and
  Grant (CDBG)      by providing decent Development Act of  Housing, and    Transportation                         Opportunity        Urban
  Programs**        housing and a       1974, Title I,      Urban Affairs                                          Subcommittee       Development,
                    suitable living     (P.L. 93-383, Aug.                                                                            Community
                    environment, and by 22, 1974, 88 Stat.                                                                            Planning, and
                    expanding economic  633) (codified at                                                                             Development
                    opportunities,      42 U.S.C. sec. 5301                                                                           
                    principally for     et seq*.*)                                                                                    
                    people of low and                                                                                                 
                    moderate income.                                                                                                  

  **Homeownership   Revitalization      Quality Housing and Committee on    Subcommittee on    Committee on        Housing and        Department of
  and Opportunity   grants enable PHAs  Work Responsibility Banking,        Housing and        Financial Services  Community          Housing and
  for People        to improve the      Act of 1998 (P.L.   Housing, and    Transportation                         Opportunity        Urban
  Everywhere (HOPE) living environment  105-276, Title V,   Urban Affairs                                          Subcommittee       Development,
  VI**              for public housing  Oct. 21, 1998, 112                                                                            Public and
                    residents of        Stat.                                                                                         Indian Housing
                    severely distressed 2518)(*codified at*                                                                           
                    public housing      42 U.S.C. sec.                                                                                
                    projects through    1437c-1, 1437z-1                                                                              
                    the demolition,     *et. seq.*, 1437w,                                                                            
                    substantial         1437bbb-1 et                                                                                  
                    rehabilitation,     seq*.*) *see also*,                                                                           
                    reconfiguration,    HOPE VI Program                                                                               
                    and/or replacement  Reauthorization and                                                                           
                    of severely         Small Community                                                                               
                    distressed units;   Mainstreet                                                                                    
                    revitalize the      Rejuvenation and                                                                              
                    sites on which      Housing Act of 2003                                                                           
                    severely distressed (P.L. 108-186,                                                                                
                    public housing      Title IV, Dec. 16,                                                                            
                    projects are        2003, 117 Stat.                                                                               
                    located and         2693)                                                                                         
                    contribute to the                                                                                                 
                    improvement of the                                                                                                
                    surrounding                                                                                                       
                    neighborhood;                                                                                                     
                    lessen isolation                                                                                                  
                    and reduce the                                                                                                    
                    concentration of                                                                                                  
                    low-income                                                                                                        
                    families; build                                                                                                   
                    sustainable                                                                                                       
                    mixed-income                                                                                                      
                    communities; and                                                                                                  
                    provide                                                                                                           
                    well-coordinated,                                                                                                 
                    results-based                                                                                                     
                    community and                                                                                                     
                    supportive services                                                                                               
                    that directly                                                                                                     
                    complement housing                                                                                                
                    redevelopment and                                                                                                 
                    that help residents                                                                                               
                    to achieve                                                                                                        
                    self-sufficiency,                                                                                                 
                    young people to                                                                                                   
                    obtain educational                                                                                                
                    excellence, and the                                                                                               
                    community to secure                                                                                               
                    a desirable quality                                                                                               
                    of life. HOPE VI                                                                                                  
                    Demolition Grants                                                                                                 
                    enable PHAs to fund                                                                                               
                    the demolition of                                                                                                 
                    severely distressed                                                                                               
                    public housing                                                                                                    
                    units, the                                                                                                        
                    relocation of                                                                                                     
                    affected residents,                                                                                               
                    and the provision                                                                                                 
                    of supportive                                                                                                     
                    services to                                                                                                       
                    relocated                                                                                                         
                    residents.                                                                                                        

  **Housing         The HOPWA Program   AIDS Housing        Committee on    Subcommittee on    Committee on        Housing and        Department of
  Opportunities for was established to  Opportunity Act     Banking,        Housing and        Financial Services  Community          Housing and
  Persons with AIDS address the         (Housing            Housing, and    Transportation                         Opportunity        Urban
  (HOPWA)**         specific needs of   Opportunities for   Urban Affairs                                          Subcommittee       Development,
                    people living with  People with AIDS                                                                              Community
                    HIV/AIDS and their  Act of 1991)                                                                                  Planning, and
                    families. HOPWA     (HOPWA) (P.L.                                                                                 Development
                    makes grants to     101-625, Title                                                                                
                    local communities,  VIII, Subtitle D,                                                                             
                    states, and         Nov. 28, 1990, 104                                                                            
                    nonprofit           Stat. 4375) (*as                                                                              
                    organizations for   codified at* 42                                                                               
                    projects that       U.S.C. sec. 12901                                                                             
                    benefit low-income  *et. seq.*)                                                                                   
                    people medically                                                                                                  
                    diagnosed with                                                                                                    
                    HIV/AIDS and their                                                                                                
                    families. HOPWA                                                                                                   
                    funding provides                                                                                                  
                    housing assistance                                                                                                
                    and related                                                                                                       
                    supportive services                                                                                               
                    as part of HUD's                                                                                                  
                    Consolidated                                                                                                      
                    Planning initiative                                                                                               
                    that works in                                                                                                     
                    partnership with                                                                                                  
                    communities and                                                                                                   
                    neighborhoods in                                                                                                  
                    managing federal                                                                                                  
                    funds appropriated                                                                                                
                    to HIV/AIDS                                                                                                       
                    programs. HOPWA                                                                                                   
                    grantees are                                                                                                      
                    encouraged to                                                                                                     
                    develop                                                                                                           
                    community-wide                                                                                                    
                    strategies and form                                                                                               
                    partnerships with                                                                                                 
                    area nonprofit                                                                                                    
                    organizations.                                                                                                    

  **Supportive      The Program is      McKinney-Vento      Committee on    Subcommittee on    Committee on        Housing and        Department of
  Housing Program** designed to promote Homeless Assistance Banking,        Housing and        Financial Services  Community          Housing and
                    the development of  Act (Stewart B.     Housing, and    Transportation                         Opportunity        Urban
                    supportive housing  McKinney Homeless   Urban Affairs                                          Subcommittee       Development,
                    and supportive      Assistance Act)                                                                               Community
                    services to assist  (McKinney Act)                                                                                Planning, and
                    homeless people in  (P.L. 100-77, July                                                                            Development
                    the transition from 22, 1987, 101 Stat.                                                                           
                    homelessness and to 482) (*codified at*                                                                           
                    enable them to live 42 U.S.C. sec.                                                                                
                    as independently as 11301 *et. seq.*)                                                                             
                    possible. Program                                                                                                 
                    funds may be used                                                                                                 
                    to provide: (1)                                                                                                   
                    transitional                                                                                                      
                    housing within a                                                                                                  
                    24-month period as                                                                                                
                    well as up to 6                                                                                                   
                    months of follow-up                                                                                               
                    services to former                                                                                                
                    residents to assist                                                                                               
                    their adjustment to                                                                                               
                    independent living;                                                                                               
                    (2) permanent                                                                                                     
                    housing provided in                                                                                               
                    conjunction with                                                                                                  
                    appropriate                                                                                                       
                    supportive services                                                                                               
                    designed to                                                                                                       
                    maximize the                                                                                                      
                    ability of people                                                                                                 
                    with disabilities                                                                                                 
                    to live as                                                                                                        
                    independently as                                                                                                  
                    possible; (3)                                                                                                     
                    supportive housing                                                                                                
                    that is, or is part                                                                                               
                    of, a particularly                                                                                                
                    innovative project                                                                                                
                    for, or alternative                                                                                               
                    method of, meeting                                                                                                
                    the immediate and                                                                                                 
                    long-term needs of                                                                                                
                    homeless                                                                                                          
                    individuals and                                                                                                   
                    families; (4)                                                                                                     
                    supportive services                                                                                               
                    for homeless                                                                                                      
                    individuals not                                                                                                   
                    provided in                                                                                                       
                    conjunction with                                                                                                  
                    supportive housing,                                                                                               
                    and (5) safe havens                                                                                               
                    for homeless                                                                                                      
                    individuals with                                                                                                  
                    serious mental                                                                                                    
                    illness currently                                                                                                 
                    residing on the                                                                                                   
                    streets who may not                                                                                               
                    yet be ready for                                                                                                  
                    supportive                                                                                                        
                    services.                                                                                                         

  **Section 8       To aid very         Housing Act of      Committee on    Subcommittee on    Committee on        Housing and        Department of
  Housing Choice    low-income families 1937, Section 8(o), Banking,        Housing and        Financial Services  Community          Housing and
  Voucher Program** in obtaining        (as amended, 42     Housing, and    Transportation                         Opportunity        Urban
                    decent, safe, and   U.S.C. 1437(o))     Urban Affairs                                          Subcommittee       Development,
                    sanitary rental                                                                                                   Public and
                    housing. For                                                                                                      Indian Housing
                    Welfare-to-Work                                                                                                   
                    rental vouchers,                                                                                                  
                    families must also                                                                                                
                    meet special                                                                                                      
                    welfare-to-work                                                                                                   
                    criteria. Section                                                                                                 
                    502 of the Public                                                                                                 
                    Housing Reform Act                                                                                                
                    states that a                                                                                                     
                    purpose of the                                                                                                    
                    legislation is                                                                                                    
                    "consolidating the                                                                                                
                    voucher and                                                                                                       
                    certificate                                                                                                       
                    programs for rental                                                                                               
                    assistance under                                                                                                  
                    Section 8 of the                                                                                                  
                    United States                                                                                                     
                    Housing Act of 1937                                                                                               
                    (the USHA) into a                                                                                                 
                    single                                                                                                            
                    market-driven                                                                                                     
                    program that will                                                                                                 
                    assist in making                                                                                                  
                    tenant-based rental                                                                                               
                    assistance more                                                                                                   
                    successful at                                                                                                     
                    helping low-income                                                                                                
                    families obtain                                                                                                   
                    affordable housing                                                                                                
                    and will increase                                                                                                 
                    housing choice for                                                                                                
                    low-income                                                                                                        
                    families."                                                                                                        

  **Section 502     To assist very low, Housing Act of      Committee on    Subcommittee on    Committee on        Housing and        Department of
  Rural Housing     low-income, and     1949, Title V,      Banking,        Housing and        Financial Services  Community          Agriculture,
  Service**         moderate-income     Section 502, as     Housing, and    Transportation                         Opportunity        Rural Housing
                    households to       amended, P.L.       Urban Affairs                                          Subcommittee       Service
                    obtain modest,      89-117, 42 U.S.C.                                                                             
                    decent, safe, and   1471 et seq.; P.L.                                                                            
                    sanitary housing    92-310 (codified at                                                                           
                    for use as a        42 U.S.C. sec. 1472                                                                           
                    permanent residence et seq*.*)                                                                                    
                    in rural areas.                                                                                                   

                                                                                                                                      
  --------------------------------------------------------------------------------------------------------------------------------------------------

Federal Transportation Programs

  ---------------- ---------------- ----------- ------------------ ------------------------- ------------------- ------------------ -----------------
  **Program Name** **Purpose**      **Act\***   **Senate**                                   **House of                             **Agency,
                                    *Original                                                Representatives**                      Office**
                                    Act*                                                                                            

                                                **Committee**      **Subcommittee**          **Committee**       **Subcommittee**   

  **Capital        To provide       (P.L.       \(1\) Committee on \(1\) Commerce, Science,  Committee on        Highways, Transit, Department of
  Assistance       financial        103-272, §  Commerce, Science, and                       Transportation and  and Pipelines      Transportation,
  Program for      assistance in    1(d), July  and                Transportation--Surface   Infrastructure      Subcommittee       Federal Transit
  Elderly Persons  meeting the      5, 1994,    Transporta-tion,   Transportation and                                               Administration
  and Persons with transportation   108 Stat.   (2) Committee on   Merchant Marine                                                  
  Disabilities**   needs of elderly 807, and    Environ-ment and   Subcommittee, (2)                                                
                   people and       amended     Public Works       Environment and Public                                           
                   people with      P.L.                           Works---Transportation                                           
                   disabilities     105-178,                       and Infrastructure                                               
                   where public     Title III,                     Subcommittee                                                     
                   transportation   § 3013(a),                                                                                      
                   services are     June 9,                                                                                         
                   unavailable,     1998, 112                                                                                       
                   insufficient, or Stat. 359)                                                                                      
                   inappropriate.   (codified                                                                                       
                   The Section 5310 at 49                                                                                           
                   program is       U.S.C. sec.                                                                                     
                   designed to      5310)                                                                                           
                   supplement FTA's                                                                                                 
                   other capital                                                                                                    
                   assistance                                                                                                       
                   programs by                                                                                                      
                   funding                                                                                                          
                   transportation                                                                                                   
                   projects for                                                                                                     
                   elderly people                                                                                                   
                   and people with                                                                                                  
                   disabilities in                                                                                                  
                   all areas:                                                                                                       
                   urbanized, small                                                                                                 
                   urban, and                                                                                                       
                   rural.                                                                                                           
  ---------------- ---------------- ----------- ------------------ ------------------------- ------------------- ------------------ -----------------

Federal Nutrition Programs

  --------------------------------------------------------------------------------------------------------------------------------------------
  **Program     **Purpose**           **Act\***     **Senate**                         **House of                             **Agency,
  Name**                              *Original                                        Representatives**                      Office**
                                      Act*                                                                                    
  ------------- --------------------- ------------- --------------- ------------------ ------------------- ------------------ ----------------
                                                    **Committee**   **Subcommittee**   **Committee**       **Subcommittee**   

  **Elderly     Elderly Nutrition     Older         Health,         Aging Subcommittee \(1\) Energy and    \(1\) Energy and   Department of
  Nutrition     Program provides      Americans Act Education,                         Commerce Committee, Commerce, Health   Health and Human
  Program       grants to support     Amendments of Labor, and                         (2) Education and   Subcommittee; (2)  Services,
  (ENP)**       nutrition services to 1992, Title   Pensions                           the Workforce       Select Education   Administration
                older people          III, Grants   Committee                          Committee           Subcommittee       on Aging
                throughout the        for State and                                                                           
                country. The Elderly  Community                                                                               
                Nutrition Program     Programs on                                                                             
                provides for          Aging (P.L.                                                                             
                congregate and        102-375,                                                                                
                home-delivered meals. Sept. 23,                                                                               
                These meals and other 1992, 106                                                                               
                nutrition services    Stat. 1195)                                                                             
                are provided in a     (codified at                                                                            
                variety of settings,  42 U.S.C.                                                                               
                such as senior        sec. 3030p).                                                                            
                centers, schools, and Older                                                                                   
                in individual homes.  Americans Act                                                                           
                Meals served under    of 1965 (P.L.                                                                           
                the program must      89-73, July                                                                             
                provide at least      14, 1965, 79                                                                            
                one-third of the      Stat. 218).                                                                             
                daily recommended                                                                                             
                dietary allowances                                                                                            
                established by the                                                                                            
                Food and Nutrition                                                                                            
                Board of the National                                                                                         
                Academies' Institute                                                                                          
                of Medicine.                                                                                                  

  **Senior      SFMNP awards grants   Farm Security Committee on    Research,          Committee on        Department of      Department of
  Farmers'      to states, United     and Rural     Agriculture,    Nutrition, and     Agriculture         Operations,        Agriculture,
  Market        States Territories,   Investment    Nutrition, and  General                                Oversight,         Food and
  Nutrition     and federally         Act of 2002,  Forestry        Legislation                            Nutrition, and     Nutrition
  Program       recognized Indian     sec. 4402,                    Subcommittee                           Forestry           Service
  (SFMNP)**     tribal governments to (Farm Bill,                                                          Subcommittee       
                provide low-income    2002) (P.L.                                                                             
                seniors with coupons  107- 171, May                                                                           
                that can be exchanged 13, 2002, 116                                                                           
                for eligible foods at Stat. 134)                                                                              
                farmers' markets,     (*codified                                                                              
                roadside stands, and  at* 7 U.S.C.                                                                            
                community-supported   sec. 3007)                                                                              
                agriculture programs.                                                                                         
                The grant funds may                                                                                           
                be used only to                                                                                               
                support the costs of                                                                                          
                the foods that are                                                                                            
                provided under the                                                                                            
                SFMNP; no                                                                                                     
                administrative                                                                                                
                funding is available.                                                                                         
                The purposes of the                                                                                           
                SFMNP are to (1)                                                                                              
                provide resources in                                                                                          
                the form of fresh,                                                                                            
                nutritious,                                                                                                   
                unprepared, locally                                                                                           
                grown fruits,                                                                                                 
                vegetables, and herbs                                                                                         
                from farmers'                                                                                                 
                markets, roadside                                                                                             
                stands and                                                                                                    
                community-supported                                                                                           
                agriculture programs                                                                                          
                to low-income                                                                                                 
                seniors, (2) increase                                                                                         
                the domestic                                                                                                  
                consumption of                                                                                                
                agricultural                                                                                                  
                commodities by                                                                                                
                expanding or aiding                                                                                           
                in the expansion of                                                                                           
                domestic farmers'                                                                                             
                markets, roadside                                                                                             
                stands, and                                                                                                   
                community-support                                                                                             
                agriculture programs,                                                                                         
                and (3) develop or                                                                                            
                aid in the                                                                                                    
                development of new                                                                                            
                and additional                                                                                                
                farmers' markets,                                                                                             
                roadside stands, and                                                                                          
                community-support                                                                                             
                agriculture programs.                                                                                         

  **Community   To support the        Food Stamp    Committee on    Research,          Committee on        Department of      Department of
  Food Projects development of        Act of 1977   Agriculture,    Nutrition, and     Agriculture         Operations,        Agriculture,
  (Food         community food        (Food Stamp   Nutrition, and  General                                Oversight,         Food and
  Stamps)**     projects designed to  Act of 1964), Forestry        Legislation                            Nutrition, and     Nutrition
                meet the food needs   Section 25                    Subcommittee                           Forestry           Service
                of low-income people; (P.L. 88-525,                                                        Subcommittee       
                increase the          Aug. 31,                                                                                
                self-reliance of      1964, 78                                                                                
                communities in        Stat. 703)                                                                              
                providing for their   (codified as                                                                            
                own needs; and        amended at 7                                                                            
                promote comprehensive U.S.C. sec.                                                                             
                responses to local    2034),                                                                                  
                food, farm, and       amended by                                                                              
                nutrition issues.     Federal                                                                                 
                                      Agriculture                                                                             
                                      Improvement                                                                             
                                      and Reform                                                                              
                                      Act of 1996                                                                             
                                      (FAIRA),                                                                                
                                      Section 401,                                                                            
                                      (P.L.                                                                                   
                                      104-127, Apr.                                                                           
                                      4, 1996, 110                                                                            
                                      Stat. 888) (7                                                                           
                                      U.S.C. sec.                                                                             
                                      2033-34).                                                                               
  --------------------------------------------------------------------------------------------------------------------------------------------

Federal Assistive Technology Programs

  -------------------------------------------------------------------------------------------------------------------------------------------
  **Program     **Purpose**           **Act\***    **Senate**                         **House of                             **Agency,
  Name**                              *Original                                       Representatives**                      Office**
                                      Act*                                                                                   
  ------------- --------------------- ------------ --------------- ------------------ ------------------- ------------------ ----------------
                                                   **Committee**   **Subcommittee**   **Committee**       **Subcommittee**   

  **Assistive   To provide grants to  Assistive    Committee on    Employment,        Committee on        Workforce          Department of
  Technology    states to support     Technology   Health,         Safety, and        Education and the   Protections        Education,
  Act (ATA) of  capacity building and Act of 1998  Education,      Training           Workforce           Subcommittee       Office of the
  1998**        advocacy activities,  (P.L.        Labor, and      Subcommittee                                              Assistant
                designed to assist    108-364,     Pensions                                                                  Secretary for
                the states in         Dec. 25,                                                                               Special
                maintaining permanent 2004)                                                                                  Education and
                comprehensive,        (Codified as                                                                           Rehabilitation
                consumer-responsive   amended at                                                                             Services
                statewide programs of 29 U.S.C.                                                                              
                technology-related    sec. 3001 et                                                                           
                assistance for        seq*.*)                                                                                
                individuals with                                                                                             
                disabilities of all                                                                                          
                ages. Revises ATA                                                                                            
                state grant programs                                                                                         
                to direct the                                                                                                
                Secretary of                                                                                                 
                Education to make AT                                                                                         
                grants to states to                                                                                          
                maintain                                                                                                     
                comprehensive                                                                                                
                statewide programs                                                                                           
                designed to (1)                                                                                              
                maximize the ability                                                                                         
                of individuals with                                                                                          
                disabilities, and                                                                                            
                their family members,                                                                                        
                guardians, advocates,                                                                                        
                and authorized                                                                                               
                representatives, to                                                                                          
                obtain AT; and (2)                                                                                           
                increase access to                                                                                           
                AT. Requires states                                                                                          
                to use portions of AT                                                                                        
                grant funds for (1)                                                                                          
                state-level                                                                                                  
                activities, including                                                                                        
                state financing                                                                                              
                system activities                                                                                            
                (which may include                                                                                           
                loan programs) to                                                                                            
                increase access to                                                                                           
                and funding for AT                                                                                           
                devices and services,                                                                                        
                as well as for                                                                                               
                programs for device                                                                                          
                reutilization, device                                                                                        
                loan, and device                                                                                             
                demonstration and                                                                                            
                information; and (2)                                                                                         
                state leadership                                                                                             
                activities, including                                                                                        
                training and                                                                                                 
                technical assistance,                                                                                        
                public-awareness                                                                                             
                activities, and                                                                                              
                coordination and                                                                                             
                collaboration.                                                                                               

                                                                                                                             
  -------------------------------------------------------------------------------------------------------------------------------------------

Caregiver Support/Respite Care

  ----------------------------------------------------------------------------------------------------------------------------------------
  **Program    **Purpose**         **Act\***    **Senate**                         **House of                             **Agency,
  Name**                           *Original                                       Representatives**                      Office**
                                   Act*                                                                                   
  ------------ ------------------- ------------ --------------- ------------------ ------------------- ------------------ ----------------
                                                **Committee**   **Subcommittee**   **Committee**       **Subcommittee**   

  **National   The NFCSP calls for Older        Committee on    Aging Subcommittee Committee on        Postsecondary      Department of
  Family       the states, working Americans    Health,                            Education and the   Education,         Health and Human
  Caregiver    in partnership with Act          Education,                         Workforce           Training and       Services,
  Support      Area Agencies on    Amendments   Labor, and                                             Life-Long Learning Administration
  Program      Aging and local     of 2000,     Pensions                                               Subcommittee       on Aging
  (NFCSP)**    community-service   section 316,                                                                           
               providers, and      (P.L.                                                                                  
               tribes to provide a 106-501,                                                                               
               continuum of        Nov. 13,                                                                               
               caregiver services, 2000, 114                                                                              
               including           Stat. 2226)                                                                            
               information,        (*codified                                                                             
               assistance,         at* 42                                                                                 
               individual          U.S.C. sec.                                                                            
               counseling, support 3030s,                                                                                 
               groups, training,   3030s-1,                                                                               
               respite, and        3030s-2,                                                                               
               supplemental        3030s-11,                                                                              
               services. These     3030s-12)                                                                              
               caregiver support                                                                                          
               services are                                                                                               
               available to adult                                                                                         
               family members or                                                                                          
               other individuals                                                                                          
               who are informal                                                                                           
               providers of                                                                                               
               in-home and                                                                                                
               community care to                                                                                          
               older people.                                                                                              
               Caregiver support                                                                                          
               services are also                                                                                          
               available to                                                                                               
               grandparents or                                                                                            
               older individuals                                                                                          
               who are relative                                                                                           
               caregivers for a                                                                                           
               child, age 18 and                                                                                          
               under. Priority                                                                                            
               consideration for                                                                                          
               services is to be                                                                                          
               given to people in                                                                                         
               greatest social and                                                                                        
               economic need, with                                                                                        
               particular                                                                                                 
               attention to                                                                                               
               low-income older                                                                                           
               individuals, and                                                                                           
               older individuals                                                                                          
               providing care and                                                                                         
               support to people                                                                                          
               18 and under with                                                                                          
               mental retardation                                                                                         
               and related                                                                                                
               developmental                                                                                              
               disabilities.                                                                                              

                                                                                                                          
  ----------------------------------------------------------------------------------------------------------------------------------------

Civil Rights Protections

  -----------------------------------------------------------------------------------------------------------------------------------------------------
  **Program Name**    **Purpose**           **Act\*** *Original **Senate**                         **House of                             **Agency,
                                            Act*                                                   Representatives**                      Office**
  ------------------- --------------------- ------------------- --------------- ------------------ ------------------- ------------------ -------------
                                                                **Committee**   **Subcommittee**   **Committee**       **Subcommittee**   

  **Americans with    ADA prohibits         Americans with      Senate          Various            \(1\) Committee on  Subcommittee on    Department of
  Disabilities Act    discrimination on the Disabilities Act of Committee on                       the Judiciary, (2)  the Constitution   Justice,
  (ADA)**             basis of disability   1990 (ADA) (P.L.    Health,                            Committee on                           Civil Rights
                      in employment, state  101-336, July 26,   Education,                         Education and the                      Division
                      and local government, 1990, 104 Stat.     Labor, and                         Workforce                              
                      public                327) (codified at   Pensions, and                                                             
                      accommodations,       42 U.S.C. sec.      Senate                                                                    
                      commercial            12101-12117,        Committee on                                                              
                      facilities,           12131-12134,        the Judiciary                                                             
                      transportation, and   12141-12150,                                                                                  
                      telecommunications.   12161-12165,                                                                                  
                      It also applies to    12181-12189; 47                                                                               
                      the United States     U.S.C. sec. 225)                                                                              
                      Congress. To be                                                                                                     
                      protected by ADA, one                                                                                               
                      must have a                                                                                                         
                      disability or have a                                                                                                
                      relationship or                                                                                                     
                      association with an                                                                                                 
                      individual with a                                                                                                   
                      disability. An                                                                                                      
                      individual with a                                                                                                   
                      disability is defined                                                                                               
                      by ADA as a person                                                                                                  
                      who has a physical or                                                                                               
                      mental impairment                                                                                                   
                      that substantially                                                                                                  
                      limits one or more                                                                                                  
                      major life                                                                                                          
                      activities, a person                                                                                                
                      who has a history or                                                                                                
                      record of such an                                                                                                   
                      impairment, or a                                                                                                    
                      person who is                                                                                                       
                      perceived by others                                                                                                 
                      as having such an                                                                                                   
                      impairment. ADA does                                                                                                
                      not specifically name                                                                                               
                      all of the                                                                                                          
                      impairments that are                                                                                                
                      covered.                                                                                                            

  **Civil Rights of   CRIPA authorizes      Civil Rights of     Senate          Various            Committee on the    Subcommittee on    Department of
  Institutionalized   actions for redress   Institutionalized   Committee on                       Judiciary           the Constitution   Justice,
  Persons Act         in cases involving    Persons Act (CRIPA) the Judiciary                                                             Civil Rights
  (CRIPA)**           deprivations of       (P.L. 96-247, May                                                                             Division
                      rights of             23, 1980, 94 Stat.                                                                            
                      institutionalized     349) (codified at                                                                             
                      people secured or     42 U.S.C. sec.                                                                                
                      protected by the      1997-1997j)                                                                                   
                      Constitution or laws                                                                                                
                      of the United States.                                                                                               
                      CRIPA is used by the                                                                                                
                      Department of Justice                                                                                               
                      to bring actions on                                                                                                 
                      behalf of those                                                                                                     
                      living in public                                                                                                    
                      nursing homes,                                                                                                      
                      facilities for those                                                                                                
                      with cognitive                                                                                                      
                      disabilities, and                                                                                                   
                      psychiatric                                                                                                         
                      hospitals. The Civil                                                                                                
                      Rights Division                                                                                                     
                      pursues cases under                                                                                                 
                      CRIPA, where public                                                                                                 
                      nursing homes or                                                                                                    
                      other public                                                                                                        
                      institutions have                                                                                                   
                      neglected or abused                                                                                                 
                      residents entrusted                                                                                                 
                      to their care, or                                                                                                   
                      have failed to meet                                                                                                 
                      residents'                                                                                                          
                      constitutional or                                                                                                   
                      federal statutory                                                                                                   
                      right to adequate                                                                                                   
                      care and services.                                                                                                  
                      These cases generally                                                                                               
                      involve an extensive                                                                                                
                      investigation of the                                                                                                
                      conditions and                                                                                                      
                      practices at the                                                                                                    
                      facility, efforts to                                                                                                
                      remedy the offending                                                                                                
                      practices, and, where                                                                                               
                      necessary, the filing                                                                                               
                      of a CRIPA action.                                                                                                  
                      Resolution of CRIPA                                                                                                 
                      suits generally                                                                                                     
                      include reaching a                                                                                                  
                      written agreement                                                                                                   
                      with the jurisdiction                                                                                               
                      that provides for                                                                                                   
                      remedial relief in                                                                                                  
                      each one of the areas                                                                                               
                      in which the                                                                                                        
                      institution failed to                                                                                               
                      meet the needs of the                                                                                               
                      residents.                                                                                                          

  **Rehabilitation    The Rehabilitation    Rehabilitation Act  \(1\) Committee Various            \(1\) Committee on  Subcommittee on    Department of
  Act (Section 504)** Act prohibits         of 1973 (P.L.       on Health,                         Education and the   the Constitution   Justice,
                      discrimination on the 93-112, Sept. 26,   Education,                         Workforce, (2)                         Civil Rights
                      basis of disability   1973, 87 Stat. 355) Labor, and                         Committee on Ways                      Division
                      in programs conducted (codified as        Pensions, (2)                      and Means                              
                      by federal agencies,  amended at 29       Committee on                                                              
                      in programs receiving U.S.C. sec. 794)    Finance                                                                   
                      federal financial                                                                                                   
                      assistance, in                                                                                                      
                      federal employment,                                                                                                 
                      and in the employment                                                                                               
                      practices of federal                                                                                                
                      contractors. The                                                                                                    
                      standards for                                                                                                       
                      determining                                                                                                         
                      employment                                                                                                          
                      discrimination under                                                                                                
                      the Rehabilitation                                                                                                  
                      Act are the same as                                                                                                 
                      those used in title I                                                                                               
                      of the Americans with                                                                                               
                      Disabilities Act.                                                                                                   
                      Section 504 states                                                                                                  
                      that "no qualified                                                                                                  
                      individual with a                                                                                                   
                      disability in the                                                                                                   
                      United States shall                                                                                                 
                      be excluded from,                                                                                                   
                      denied the benefits                                                                                                 
                      of, or be subjected                                                                                                 
                      to discrimination                                                                                                   
                      under" any program or                                                                                               
                      activity that either                                                                                                
                      receives federal                                                                                                    
                      financial assistance                                                                                                
                      or is conducted by                                                                                                  
                      any executive agency                                                                                                
                      or the United States                                                                                                
                      Postal Service. Each                                                                                                
                      federal agency has                                                                                                  
                      its own set of                                                                                                      
                      Section 504                                                                                                         
                      regulations that                                                                                                    
                      apply to its own                                                                                                    
                      programs. Agencies                                                                                                  
                      that provide federal                                                                                                
                      financial assistance                                                                                                
                      also have Section 504                                                                                               
                      regulations covering                                                                                                
                      entities that receive                                                                                               
                      federal aid. Each                                                                                                   
                      agency is responsible                                                                                               
                      for enforcing its own                                                                                               
                      regulations. Section                                                                                                
                      504 may also be                                                                                                     
                      enforced through                                                                                                    
                      private lawsuits.                                                                                                   

  **Fair Housing Act  The FHA, as amended   Fair Housing Act    Committee on    Various            \(1\) House         \(1\) Subcommittee Department of
  (FHA)**             in 1988, prohibits    (P.L. 90-284, Title Finance                            Financial Services  on Housing and     Justice,
                      housing               VIII, Apr. 11,                                         Referral, (2)       Community          Civil Rights
                      discrimination on the 1968, 82 Stat. 81)                                     Committee on Ways   Opportunity, (2)   Division and
                      basis of race, color, (codified at 42                                        and Means, (3)      Subcommittee on    the Office of
                      religion, sex,        U.S.C. sec.                                            House Judiciary     the Constitution   Program
                      disability, familial  3601-3619)                                                                                    Compliance,
                      status, and national                                                                                                and the
                      origin. Its coverage                                                                                                Office of
                      includes private                                                                                                    Fair Housing
                      housing, housing that                                                                                               and Equal
                      receives federal                                                                                                    Opportunity
                      financial assistance,                                                                                               at the U.S.
                      and state and local                                                                                                 Department of
                      government housing.                                                                                                 Housing and
                      It is unlawful to                                                                                                   Urban
                      discriminate in any                                                                                                 Development
                      aspect of selling or                                                                                                
                      renting housing or to                                                                                               
                      deny a dwelling to a                                                                                                
                      buyer or renter                                                                                                     
                      because of the                                                                                                      
                      disability of that                                                                                                  
                      individual, an                                                                                                      
                      individual associated                                                                                               
                      with the buyer or                                                                                                   
                      renter, or an                                                                                                       
                      individual who                                                                                                      
                      intends to live in                                                                                                  
                      the residence. The                                                                                                  
                      FHA requires owners                                                                                                 
                      of housing facilities                                                                                               
                      to make reasonable                                                                                                  
                      exceptions in their                                                                                                 
                      policies and                                                                                                        
                      operations to afford                                                                                                
                      people with                                                                                                         
                      disabilities equal                                                                                                  
                      housing                                                                                                             
                      opportunities. The                                                                                                  
                      FHA also requires                                                                                                   
                      landlords to allow                                                                                                  
                      tenants with                                                                                                        
                      disabilities to make                                                                                                
                      reasonable                                                                                                          
                      access-related                                                                                                      
                      modifications to                                                                                                    
                      their private living                                                                                                
                      space, as well as to                                                                                                
                      common use spaces.                                                                                                  
                      (The landlord is not                                                                                                
                      required to pay for                                                                                                 
                      the changes.) The Act                                                                                               
                      further requires that                                                                                               
                      new multifamily                                                                                                     
                      housing with four or                                                                                                
                      more units be                                                                                                       
                      designed and built to                                                                                               
                      allow access for                                                                                                    
                      people with                                                                                                         
                      disabilities.                                                                                                       
  -----------------------------------------------------------------------------------------------------------------------------------------------------

#  

# 

# Chapter 2

# Future Market Demand and Understanding Costs of Long-Term Services and Supports: Financing and Systems Reform for Americans with Disabilities 

##   {#section-28 .unnumbered}

## Table of Contents Chapter 2

**Page**

**Part I\
Introducing Research Purpose and the Rich Picture Story Line** 191

**Part II\
Forecasting the Storm** 193

**Part III\
Tracking the Storm** 197

**Part IV\
Lowering the Lifeboats** 216

**Part V\
Approaching the Iceberg** 225

**Part VI\
Reviewing the Passenger Manifest** 241

**Part VII\
Moving Toward Reform** 272

##   {#section-29 .unnumbered}

## Part I Introducing Research Purpose and the Rich Picture Story Line

*Long-Term Services and Support Financing and Systems Reform*

### Purpose

The purpose of chapter 2 is to explore and understand the future market
demand and costs of long-term services and supports (LTSS) for
individuals with disabilities through a review and analysis of the
literature and in-depth case studies of six individuals to better
understand the current experience with and future need for affordable
LTSS nationwide for Americans with disabilities.

### Rich Picture Story Line[^342]

The setting for chapter 2 is the LTSS ship heading toward the iceberg in
the waters of reform. The iceberg represents barriers to reform; the
state of the economy; state and federal deficits; rising health care
costs; workforce shortages; increasing numbers of uninsured; low
national savings; and increased longevity of all Americans. The setting
in part II is an overview of the storm clouds: multidimensional
financial and attitudinal challenges that compete for the attention of
even the most skilled navigators. In part III, the consumer-directors
chart their way through the demographic challenges and trends of the
current and future LTSS system. The setting in part IV is the LTSS ship
with its consumer-directors talking with other Medicaid beneficiaries
about the rising costs. The waves are taking their toll, and it becomes
evident that some passengers must be lowered onto lifeboats and given
passage to safer waters. In part V, the ship will come face to face with
the financial barriers to reform and lower its lifeboats yet again
before hitting the iceberg. In part VI, six consumer-directors will
introduce themselves and provide information about their journey and
what they think their lives will look like in 2030. In part VII, the
consumer-directors will summarize their findings and prepare for their
final voyage into the waters of reform.

### Research Questions

The Government Accountability Office (GAO) states clearly in its "21st
Century Challenges: Reexamining the Federal Base of Government" that
current fiscal policies in place today are economically unsustainable
over the long term without unprecedented changes in tax and/or spending
policies.[^343] The report identifies emerging forces that are carving
out a new position for the United States in the world today. Several of
these forces---long-term fiscal imbalance, increasing global
interdependence, changing economy, demographic shifts, science and
technology advances, and quality-of-life trends---will directly impact
the current and future viability of LTSS for Americans with
disabilities. In addition, the report poses a set of 21st century
questions intended to guide Congress in addressing current fiscal
demands as well as future fiscal challenges in fine-tuning current and
future public policy that covers discretionary spending, mandatory
spending (including entitlements), and tax policies.[^344]

This chapter will probe answers to the following questions:

-   Who needs LTSS?

-   How is the population projected to change over the next 25 years?

-   What are the pathways for eligibility for LTSS and have they
    changed?

-   Who is meeting the LTSS demands and financing them?

-   What do we know about LTSS costs today and in the future?

## Part II Forecasting the Storm 

*Overview of the Problem*

The United States is a nation at risk at it enters the 21st century with
unsustainable social and fiscal policy to support its aging and
disability population. Despite two centuries of economic progress, it is
still without a sustainable internal infrastructure for the delivery of
affordable health care and LTSS for all Americans.[^345]^,^ [^346]^,^
[^347] Because of the intersection of many demographic changes over the
next century---such as increased longevity; low fertility rates;
changing patterns of marriage, divorce, and participation in the labor
force and immigration; lower national savings; rising state deficits and
health care costs---there is great concern about the future of LTSS for
Americans with disabilities. [^348]^,^ [^349]^,^ [^350]

The director of the Congressional Budget Office (CBO), in testimony on
Social Security reform before the Committee on the Budget, U.S. House of
Representatives, on February 9, 2005, testified that "a major
achievement of reform is to resolve uncertainty about the future and
that uncertainty is an economic cost in its most fundamental form . . .
and the sooner the uncertainty is resolved the better served future
beneficiaries will be."[^351] The director stated that the key
uncertainty stems from a central policy question: To what extent should
Social Security programs in the 21st century resemble the program in the
20th century? The Consortium for Citizens with Disabilities responded
that Congress should request a beneficiary impact statement for every
major component of any serious proposal and that, when evaluating any
program that affects millions of individuals of all ages, it is
essential for policymakers to look beyond the budgetary change to
understand the actual impact on people's daily lives.[^352]

There are 38 million Americans under age 65 reporting some level of
disability[^353] and, of this group, 25 million (11 percent of the
nonelderly population) have a specific chronic disability.[^354]
Fifty-three percent have private insurance, 20 percent are covered under
Medicaid, 15 percent are uninsured, and 12 percent have Medicare and
other types of insurance.[^355] There are 8.1 million Americans with
disabilities on Medicaid and another 6 million on Medicare who are under
age 65.[^356] The Medicaid beneficiaries with disabilities are
substantially more impaired than other individuals with disabilities.
About 50 percent have a physical impairment, one-fourth have some
limitation in performing activities of daily living (ADLs), and 40
percent have severe mental symptoms or disorders.[^357]

Most of the research on aging defines a person as needing LTSS if he or
she requires another person's help with one or more ADLs or instrumental
activities of daily living (IADLs). Using this definition, there are 9.5
million people with LTSS needs, and 36 percent (3.56 million) are
nonelderly, including residents of nursing home and intermediate care
facilities for the mentally retarded (ICF/MRs).[^358]

The comptroller general of the GAO has called for a "fundamental
reexamination" of America's spending and tax priorities because of the
mounting long-term fiscal challenges primarily caused by known
demographic trends and growing health care costs.[^359] A national forum
of leading experts convened to explore the gap in public understanding
of the nature and magnitude of the long-term fiscal challenge and to
examine strategies for marketing the problem to the public to begin the
dialogue about solutions. The problem was described as "too big to be
solved by economic growth, or making modest changes to existing spending
and tax policy."[^360] The seriousness of the problem is reflected in
the growing imbalance between discretionary and mandatory spending. In
1964, two-thirds (67 percent) of total federal spending was
discretionary; in FY 2004, this share had shrunk to about 39
percent.[^361]

Key barriers identified at the national forum were similar to the
barriers identified in chapter 1 of this report: gaining public and
political will; lack of consensus among leaders on the nature, extent,
and timing of the nation's fiscal problem; lack of possible solutions;
and lack of public understanding of the problem.[^362] This phenomenon
is perplexing: Despite years of national symposiums, thousands of
published research studies, and millions of dollars spent on the
economics of America's troubled social and fiscal policy, we are still
without reform. [^363]

Testimony on the crisis in long-term care (LTC) spending was heard on
April 19, 2005, before the Subcommittee on Health of the House Committee
on Ways and Means, U.S. House of Representatives. Noticeably absent was
research about the service and support needs and challenges of people
with disabilities who are under the age of 65. Congress and the American
public still think only of aging when they discuss issues of LTSS. Even
the research is scarce on the prevalence and demographics of people
using LTSS under age 65. As the current debate heats up, it will be
imperative that disability research is developed that provides
comprehensive data on what it costs to live with a lifelong disability.

The current system of LTSS is based on policy and purpose written 40
years ago for low-income Americans on public assistance, children, the
elderly, and people with disabilities. Although Medicaid and Medicare
have made many improvements over the past four decades, their
fundamental purposes were not designed to meet the needs of the current
aging and disability demographics. Today, less than 20 percent of people
on Medicaid are on welfare; 30 percent of the population includes the
elderly and people with disabilities, and the other 70 percent includes
mostly children and families who need health insurance.[^364] Despite
legislation that allows states to shift services and supports from the
nursing home to the community, Medicaid continues to spend 64.3 percent
(\$73.1 billion) for care in nursing facilities and ICF/MRs, mainly for
people with disabilities.[^365] Medicaid spending has gone from 8
percent of state budgets in 1985 to 22 percent in 2003.[^366] Seven
million people with disabilities receive both Medicaid and Medicare
(dual eligible) and account for 42 percent of all state Medicaid
spending.[^367]

Although Americans make more money than the rest of the world, they
spend more.[^368] Many people with disabilities and seniors who are not
eligible for public benefits are not financially prepared to pay for the
costs of LTSS (only 7% have annual incomes of \$50,000 or
more).[^369]^,^ [^370]A private room in a nursing home in 2003 was
\$66,000 on average and a home health aide averaged \$18 per hour.
People with disabilities under age 65 are poorer and have less work
history than today's retired seniors (35% have incomes hovering around
the federal poverty level). Individuals with disabilities on
Supplemental Security Income (SSI) who are working (more than 323,000)
are challenged by disincentives in the policy that discourage earnings
and prevent the development of assets that could provide resources to
pay a fair share of the costs for LTSS.[^371]

Few Americans with lifelong impairments purchase LTC insurance because
of the cost and the reluctance of the insurance industry to underwrite
high-risk populations.[^372]^,^ [^373] Yet, a few major investment
houses are marketing financial planning products for special needs
populations, which appeal to parents challenged with providing for the
long-term future of a child with a lifelong disability. Ten percent of
Americans have purchased LTC insurance, but for people with
disabilities, many of the standard policies cater more to medical
rehabilitation and less to the nonspecific needs of those who have a
chronic illness or long-term impairment. Under the current system, it is
unclear how families and communities plan to support a child born today
with a lifelong disability that will require extraordinary costs.

The trend to drop employer-based health care is growing as annual health
care premiums continue to rise.[^374] The Institute of Medicine
estimates that 18,000 lives are lost each year because of gaps in
insurance coverage at an economic cost between \$65 billion and \$139
billion annually from premature death, preventable disability, early
retirement, and reduced economic output.[^375]

The shrinking workforce, both paid and unpaid, providing the majority of
LTSS is unstable, underpaid, and untrained.[^376] The family unit that
provides the majority of unpaid care today (women in their 50s) will
change in the future.[^377] More women are opting out of motherhood and
remaining single or divorced.[^378]

America must construct a new system for individuals who need LTSS to go
to school, to work, or to be retired at home. Most important, it needs a
system that will promote independence and self-sufficiency in an
affordable and dignified way.

## Part III Tracking the Storm

*Demographic Trends in Long-Term Services and Supports*

### Defining Long-Term Services and Supports 

The 21st century LTSS policy is guided by a strong federal and state
commitment toward home- and community-based services (HCBS) and is an
important milestone for people with disabilities. The shifting of costs
from institutional spending to community-based service spending is
providing the infrastructure and capacity for people with disabilities
to work, go to school, and live independently. The evolution of the
current system of LTSS requires a definition that identifies the scope
and depth of services needed that is inclusive of people with
disabilities under the age of 65.[^379]

The NCD supports a broad definition of LTSS that reflects the essential
needs for maintaining a quality of life with maximum dignity and
independence. Housing, transportation, nutrition, technology, personal
assistance, and other social supports are included in the NCD definition
of LTSS.[^380]

The AARP definition of long-terms services and supports provides a good
overview of the breadth and depth of what a long-term services and
support policy means today:

LTSS refers to a wide range of in-home, community-based, and
institutional services and programs that are designed to help
individuals of all ages with physical or mental impairments who have
lost or never acquired the ability to function independently. LTSS
include assistance with performing self-care activities and household
tasks, habilitation and rehabilitation, adult day services, case
management, social services, assistive technology, job modification, and
some medical care. LTSS are provided in a variety of settings, including
at home, in assisted living and other supportive housing settings, and
in nursing homes.[^381]

The AARP Policy Book explains that people with disabilities prefer to
use the phrase "long-term services and supports" rather than "long-term
care" because of possible implications concerning dependence or
paternalism. The movement to provide services and supports in the
community rather than in an institution is the result largely of the
work of disability advocates who have worked for decades to control the
direction of their services and supports outside the traditional
facility or institution. Federal and state legislation and the Supreme
Court have responded with a flurry of demonstration projects and
decisions that have favored noninstitutional living. However, federal
and state Medicaid spending for LTSS continues to favor institutional
care (nursing facilities and ICF/MRs), with the balance spent on
HCBS.[^382]

The Congressional Research Service (CRS) found that different disability
groups have focused on different aspects of consumer-directed LTSS to
fit their individual needs, including the use of individual budgets and
other self-empowering strategies for managing and directing their own
services and supports.[^383] The CRS reported that

Individuals with physical disabilities and who are aging have generally
focused on personal care services. For individuals with developmental
disabilities, consumer direction has been referred to as
"self-determination" and has often included other long-term care
services in addition to personal care services, such as respite and
adult day care. For individuals with serious and persistent mental
illness, opportunities for consumers to direct their own services have
not been as prevalent, although there is a growing interest in consumer
empowerment, peer-support services, and peer participation in
treatment.[^384]

No research found estimated overall costs for an individual with a
lifelong impairment based on the definitions used here for LTSS. The
productivity losses, societal costs, direct medical and nonmedical
utilization rates, housing, and living expenses for a person living with
a lifelong disability are important statistical data that when
aggregated would help build a true economic picture for policy and
budget discussion. There are studies that have looked at prevalence and
mortality rates of particular categories of disability but have not
included other relevant variables about what it takes for a family to
raise a child with a severe chronic lifelong disability.[^385]

The importance of introducing a new definition for LTSS is that it will
describe to policymakers and budget directors the unique issues and
economic profile of living with a disability under the age of 65. The
current focus on LTC for people over 65 was underscored in an April 2004
paper from the CBO on "Financing Long-Term Care for the Elderly." One
page was dedicated to "nonelderly people." The study found that, in
general, people younger than 65 use LTC services for different reasons
than people over 65 years of age, referring to mental illness, mental
retardation, and neurological conditions.[^386] The CBO paper does
report that Medicaid is the largest funder for LTC for impaired people
under the age of 65 and that, since 1992, the program has grown 4.8
percent annually. The CBO report is directed to Congress and provides
little information about the LTSS needs of people with disabilities
under the age of 65, other than that they are mostly Medicaid dependent.
It is clear that Congress would need more information about the 14
million Americans under age 65 on Medicaid and Medicare to better
understand the demographics, costs, and service needs of those receiving
LTSS through public programs who are working, going to school, living at
home, or retired. New LTSS policy must include not only the aging cohort
of Americans with disabilities but also the under-65 cohort.

When actuaries prepare assumptions about the future, they look at a
number of factors. The actual future income and expenditures for a new
system of LTSS will depend on many factors, including the size and
characteristics of the population receiving benefits, the size and level
of benefit amounts, and the number of workers and their earnings. None
of the proposals for reforming the current LTSS system provided
assumptions about future costs (see chapter 3) that included the full
array of factors, such as the following: birthrates, death rates,
immigration, marriage and divorce rates, retirement-age patterns,
disability incidence and termination rates, production gains, wage
increases, medical and nonmedical costs, inflation, and many other
demographic, economic, and program-specific factors.[^387]

Even demographic data about the nonelderly users of LTSS who are living
in institutions (including group homes) is not readily available,
because the various surveys used to collect this data do not encompass
all institutional settings.[^388] The Disability Supplement to the
National Health Interview Survey (NHIS-D) is a household survey of
nonelderly community dwellers and does not include group homes that in
2004 represented about 7 percent of the population with mental
retardation and developmental disabilities (MR/DD). The National
Long-Term Care Survey (NLTCS) draws from Medicare enrollment files and
community and institutional residents, and the researchers found that
"no such population-based survey exists for the non-elderly using
long-term services and supports and no combination of existing surveys
can be said with confidence to provide a similarly comprehensive view of
the non-elderly."[^389] One survey did collect data in 1987---the
National Medical Expenditure Survey, Institutional Population
Component---and, at the time, did include nursing homes, ICF/MRs, and
licensed personal care homes for residents of all ages.[^390] However,
its successor survey in 1996---the Medicaid Expenditure Panel Survey
(MEPS)---restricted data collection to nursing homes only. The authors
estimated that about 416,000, or 0.4 million people (MR/DD and mentally
ill in state mental institutions, residential facilities, government
general hospitals, private hospitals, and VA medical centers), are left
out of national surveys of nonelderly recipients of LTSS. This
population is not always reflected in the national figures used to
represent the number of people under 65 years of age needing services
and supports.

Table 2.1 combines two national survey data sets to compare
community-based service use and nursing home use for individuals under
65 years of age with nonusers of community service. Females are more
likely to receive community-based services and be in nursing homes than
males in the general public; 4.8 percent of community-based service
users are widowed, compared with 10.3 percent of nursing home residents
and 1.8 percent of nonusers; individuals receiving both community-based
services and nursing home services were 50 percent more likely to have
an education of less than 12 years; and community-based users had twice
the poverty rate of nonusers.[^391] There was no single data set to
provide national estimates for elderly and nonelderly LTC users in both
community and institutional settings.[^392]

+-------------------+----------------+----------------+----------------+
| Table 2.1.        |                |                |                |
| Demographics of   |                |                |                |
| Long-Term Service |                |                |                |
| and Supports,     |                |                |                |
| Community-Based   |                |                |                |
| Users and         |                |                |                |
| Nonusers[^393]    |                |                |                |
+-------------------+----------------+----------------+----------------+
| **                | **Nonusers of  | **C            | **Nursing Home |
| Characteristics** | Community      | ommunity-Based | Residents      |
|                   | Services**     | Services Use   | \<65**         |
|                   |                | \<65**         |                |
+-------------------+----------------+----------------+----------------+
| **Population      | 155,200        | 3,364 (2.1%)   | 138 (0.1%)     |
| (Thousands)**     | (97.8%)        |                |                |
+-------------------+----------------+----------------+----------------+
| **Mean Age        | 38             | 45             | 51             |
| (Years)**         |                |                |                |
+-------------------+----------------+----------------+----------------+
| **Gender**        | 50.8           | 57.6           | 51.0           |
|                   |                |                |                |
| Female            | 49.2           | 42.4           | 49.0           |
|                   |                |                |                |
| Male              |                |                |                |
+-------------------+----------------+----------------+----------------+
| **Race**          | 83.2           | 77.0           | 76.1           |
|                   |                |                |                |
| White             | 12.0           | 19.0           | 19.2           |
|                   |                |                |                |
| Black             | 04.9           | 04.0           | 04.7           |
|                   |                |                |                |
| Other             |                |                |                |
+-------------------+----------------+----------------+----------------+
| **Marital         | 65.9           | 57.3           | 16.4           |
| Status**          |                |                |                |
|                   | 01.8           | 04.8           | 10.3           |
| Married           |                |                |                |
|                   | 22.0           | 29.2           | 46.3           |
| Widowed           |                |                |                |
|                   | 10.2           | 18.4           | 27.0           |
| Never Married     |                |                |                |
|                   |                |                |                |
| S                 |                |                |                |
| eparated/Divorced |                |                |                |
+-------------------+----------------+----------------+----------------+
| **Education**     | 15.3           | 34.3           | 42.0           |
|                   |                |                |                |
| Less Than 12      | 37.1           | 39.4           | 23.8           |
| Years             |                |                |                |
|                   | 46.9           | 23.5           | 16.9           |
| 12 Years          |                |                |                |
|                   | 0.70           | 02.7           | 16.4           |
| Greater Than 12   |                |                |                |
| Years             |                |                |                |
|                   |                |                |                |
| Missing           |                |                |                |
+-------------------+----------------+----------------+----------------+
| **Poverty**       | 10.2           | 26.0           | N/A            |
+-------------------+----------------+----------------+----------------+
| **Level of        | N/A            | 55.9           | 07.7           |
| IADL/ADL**        |                |                |                |
|                   | N/A            | 26.7           | 14.5           |
| Disability        |                |                |                |
|                   | N/A            | 17.4           | 75.5           |
| IADL Only         |                |                |                |
|                   |                |                |                |
| 1-2 Adls          |                |                |                |
|                   |                |                |                |
| 3-6 ADLS          |                |                |                |
+-------------------+----------------+----------------+----------------+
| **Functional      | 05.1           | 33.3           | N/A\           |
| Limitations**     |                |                | N/A\           |
|                   | 00.8           | 1.6            | N/A\           |
| Lower Body Only   |                |                | N/A            |
|                   | 01.5           | 38.1           |                |
| Upper Body Only   |                |                |                |
|                   | 92.2           | 26.2           |                |
| Upper And Lower   |                |                |                |
| Body              |                |                |                |
|                   |                |                |                |
| Neither           |                |                |                |
+-------------------+----------------+----------------+----------------+
| **Use of Mobility | 00.8           | 25.0           | 13.0           |
| Equipment**       |                |                |                |
+-------------------+----------------+----------------+----------------+
| **Use of          | 00.1           | 12.7           | 65.2           |
| Wheelchair**      |                |                |                |
+-------------------+----------------+----------------+----------------+
| **Difficulty      | 01.6           | 17.4           | 30.2           |
| Seeing**          |                |                |                |
+-------------------+----------------+----------------+----------------+
| **Difficulty      | 03.5           | 11.3           | 12.8           |
| Hearing**         |                |                |                |
+-------------------+----------------+----------------+----------------+
| **Difficulty      | 00.3           | 11.6           | 16.6           |
| Communication**   |                |                |                |
+-------------------+----------------+----------------+----------------+
| **Difficulty      | 00.4           | 09.8           | 12.0           |
| Understanding**   |                |                |                |
+-------------------+----------------+----------------+----------------+
| **Mental          | 00.1           | 11.6           | N/A            |
| Retardation**     |                |                |                |
+-------------------+----------------+----------------+----------------+

N/A = not available.

### People Who Use Long-Term Services and Supports

The development of public policy for LTSS requires finding a common
ground for defining eligibility. The review of the literature found
definitions for disability that identify function (ADLs, IADLs), chronic
illness, children with chronic illness, census data on perceived
disability, and work disability. The accepted definitions of eligibility
are the two major ones, provided by Medicaid and SSI, which are used
most often in the literature and are the gateway to services and
supports for millions of Americans with disabilities.

Seventy-eight percent (5.6 million) of people with disabilities in FY
2000 enrolled in Medicaid through SSI; the remaining 22 percent (8.1
million) were categorized as "other" (some on Medicare). It is estimated
that about 25 million Americans under the age of 65 with chronic
disabilities need some help with ADLs[^394] but often do not meet the
criteria of total disability required by Social Security until their
conditions are in the advanced stage.[^395] Examples include people with
HIV and multiple sclerosis. The CRS data estimates that 3.4 million
people with disabilities under age 65 receive an array of LTSS (mostly
in their homes and unpaid), but this varies depending on each state's
fiscal capacity or changing economic condition.

### Emerging Demographics of Long-Term Service and Support Use

Trends for chronic disease and disabilities are showing increases. The
prevalence of chronic disease and deaths caused by noncommunicable
disease in the United States between 1990 and 2020 will increase from
28.1 million to 49.7 million, an increase of 77 percent. Overall heart
disease, in terms of both death and disability, will be greater than any
other illness. Cancer will rank second. By the year 2010, mental
illness, namely unipolar major depression, will have a greater impact on
death and disability than cancer.[^396] Medicaid has become the
principal public payer of mental health services at 36 percent, with
Medicare spending 22 percent, and state and local governments spending
35 percent with another 7 percent coming from the Federal Government,
totaling \$48 billion.[^397] The most common chronic disability
conditions relate to mental health, mental retardation, cognitive
impairment, and learning disability.

The impacts of these trends and further analyses have varied predictions
for prevalence and future health care costs. However, the challenge
inherent in consolidating the medical and nonmedical needs for LTSS into
population characteristics with cost estimates differs based on criteria
and the definition of disability used. The following definitions and
estimates of disability prevalence are good examples of how complex and
confusing this can be.

### Use of ADLs and IADLs in Measuring Functional Ability 

The definitions used in describing the ability of individuals to
function independently in the community are ADLs and IADLs. ADLs include
a person's ability to perform the following functions: bathing,
dressing, eating, toileting, getting in or out of bed or a chair, and
getting around inside the home. IADLs include preparing meals, going
outside the home, managing money, using the telephone, taking
prescription medications, and doing housework.[^398] For people with
intellectual impairments, the ADL and IADL criteria do not always
accurately represent their functioning capacity. Further research is
being done on expanding criteria to better serve people with
intellectual impairments. The estimate of community-based LTSS, among
the nonelderly is 2.1 percent (over 3.4 million) receiving assistance
with ADL or IADL tasks.

The likelihood of needing help with ADLs rises with age. It is estimated
that, by age 65, 10 to 20 percent of individuals will require assistance
with at least one or more ADL and that, by age 85, 50 percent will
require assistance.[^399] Demographers predict a dramatic impact on the
prevalence of disability and use of LTSS in the coming decades. People
who need help with at least two ADLs will increase from 1.8 million
(1996--2000) to 3.8 million (2045---2049). The number of nursing home
residents and residents in alternative living facilities over age 65
will increase from 2 million in 2000 to 2.6 million in 2020 and 4.5
million in 2050. The number of home-based services users will increase
from 5.4 million in 2000 to 7.2 million in 2020 to 10.5 million in
2050.[^400]

The research concludes that disability has declined in the over-65
population for those who reported needing help with IADLs. The decline
represented a 3.9 percentage point decline in elderly people receiving
help from someone with ADLs and IADLs and a 1.4 percentage point
increase in elderly people who managed ADLs in the community with
assistive devices only.[^401] The study also found a 3.7 percentage
point drop in help with money management between 1984 and 1989, when
Social Security direct deposit became the norm, raising the question of
whether IADL declines reflect improvements in health or improvements in
the physical environment. Researchers suggest that the overall decline
may be driven by environmental and not health-related changes. Increases
in technology and greater availability of services and durable medical
equipment, including assistive technology, are thought to have
contributed to the decline. The mean number of IADLs for which people
with disabilities received assistance declined over the 15-year study,
but the mean number of ADLs for which assistance was received increased
for people with disabilities living in institutions and in the
community. If the IADL rate continues to decline, researchers will study
the relationship among savings in Medicare, Medicaid, and LTSS.[^402]

Definitions of disability in the literature vary from ICD-9 Codes to
subjective criteria, such as a child's ability to play. The scope of the
population with disabilities was not consistent; for example, parameters
such as age range, setting of services, and service types used to
segment and measure the population. In addition to the use of ADLs and
IADLs, four additional definitions are listed in table 2.2.

+---------------+-----------------------------+------------------------+
| Table 2.2.    |                             |                        |
| Disability    |                             |                        |
| Definitions   |                             |                        |
+---------------+-----------------------------+------------------------+
| *             | **Disability**              | **Demographics**       |
| *Disability** |                             |                        |
|               | **Definitions**             |                        |
| *             |                             |                        |
| *Categories** |                             |                        |
+---------------+-----------------------------+------------------------+
| Fun           | Limits in or inability to   | 47.6 million Americans |
| ctional[^403] | perform a variety of        |                        |
|               | physical activity, serious  | 6.1 million children   |
|               | sensory impairment (e.g.,   |                        |
|               | unable to read a newspaper, | 25.7 million           |
|               | even with glasses), serious | working-age adults     |
|               | symptoms of mental illness, |                        |
|               | long-term care needs, use   | 15.8 million elderly   |
|               | of an assistive device      |                        |
|               | (e.g., wheelchair),         |                        |
|               | developmental delay in a    |                        |
|               | child that is identified by |                        |
|               | a physician, and inability  |                        |
|               | to perform age-appropriate  |                        |
|               | functions.                  |                        |
+---------------+-----------------------------+------------------------+
| Work[^404]    | Limitations or the          | 16.9 million           |
|               | inability to work as a      | working-age adults     |
|               | result of a physical,       | (18-64 years of age)   |
|               | mental, or emotional health |                        |
|               | condition.                  |                        |
+---------------+-----------------------------+------------------------+
| Pe            | Individuals who reported    | 19 million Americans   |
| rceived[^405] | that they considered        |                        |
|               | themselves to have a        | 2 million children     |
|               | disability or were          |                        |
|               | considered by others to     | 11.1 adults (18-63     |
|               | have a disability.          | years of age)          |
|               |                             |                        |
|               |                             | 6 million elderly      |
+---------------+-----------------------------+------------------------+
| Public        | Includes people covered by  | 13.8 million           |
| Program       | government funding          | individuals            |
| Recipients    | programs, Special Education |                        |
| Under         | or Early Intervention       | 4.7 million children   |
| Age 65[^406]  | Services, and/or disability |                        |
|               | pensions.                   | 9.1 million adults age |
|               |                             | 18-64                  |
|               |                             |                        |
|               |                             | 65 and older not       |
|               |                             | included in this       |
|               |                             | definition             |
+---------------+-----------------------------+------------------------+

A study from the Research Institute and Training Center on Community
Living at the University of Minnesota examined the service use by and
needs of adults with functional limitations (FLs) or intellectual
disabilities/developmental disabilities (ID/DD) between the ages of
18--35 and\
35--64. The researchers found that people with ID/DD have substantially
more limitations in ADLs, learning, communication, self-direction, and
economic self-sufficiency compared with people with FLs only. Women with
ID/DD 35 years and older were more likely to have economic problems than
women under age 35 with FLs only. Gender differences were found in the
two populations---more males were found in both age categories with
ID/DD and more females were found in the FL category age 35 and older.
This study has important policy implications because it suggests that,
within different categories of disability, there are different service
needs that get overlooked, and that a more careful study of the gender
and age differences between groups may be needed.

Another challenge for individuals with disabilities under the age of 65
with personal assistance needs is receiving the necessary hours of
support. A recent study estimated the shortfall in hours of help and
adverse consequences and found that individuals who needed help with two
or more of the five basic ADLs had a shortfall of 16.6 hours of help per
week compared with those whose needs are met.[^407] Those with unmet
needs were more likely to be nonwhite, to be female, and to live alone.
The shortfall in hours as a percentage of needed hours is twice as great
for people who live alone. Both groups in the study found those who live
with someone and those who live alone experienced adverse consequences
in 29 out of the 34 measures tested, including weight loss, dehydration,
falls, burns, and dissatisfaction with the help received. People who
live alone and have unmet needs are 10 times as likely to go hungry, 20
times more likely to miss a meal, and 5 times as likely to lose
weight.[^408]

Personal assistance services (PAS) are provided to about 13.2 million
noninstitutionalized adults, representing an average of 31.4 hours of
PAS each week.[^409] Of these, 3.2 million people received an average of
17.6 hours of paid help, and 11.7 million received an average of 30.7
hours of unpaid help. This study found that older people are likely to
receive paid PAS and that working-age people rely more on unpaid PAS.

The policy implications of these studies suggest that future LTSS policy
should consider the number of working individuals under age 65, their
specific needs for PAS, and the impact that adequate and consistent PAS
might have on future earnings and long-term employment for working-age
individuals with disabilities.

### Children and the Need for Long-Term Services and Supports

A report by the U.S. Department of Health and Human Services (HHS),
"Children with Severe Chronic Conditions on Medicaid," used 360
disease-specific codes (ICD-9 Codes) to define children with physical
and mental health disabilities.[^410] In addition to the diagnosis
codes, the criteria for disability included hospital utilization
criteria. Physical disability utilization criteria included the
following:

-   3 or more hospital admissions;

-   20 or more days of inpatient hospital care;

-   total outpatient payment of \$5,000 or more; and

-   total payment of \$20,000 or more.

::: Definition-Term
Mental health disability criteria included the following:
:::

-   30 days or more of inpatient hospital care with any of the primary
    psychiatric diagnoses; and

-   outpatient payments of \$5,000 or more for any of the primary
    psychiatric diagnoses.[^411]

A 1995 summary by the Assistant Secretary for Planning and Evaluation
(ASPE) identified 4,536,300 American children with disabilities. This
report defined disability as difficulty with certain functions or
abilities (e.g., playing) because of a physical or mental health
impairment.[^412] This summary also stated that determining the
prevalence of disability was difficult due to varied definitions;
however, it reported that 4,536,300 children in the United States had a
disability and that 98 percent lived in the community and 2 percent
(91,800) lived in institutions; 1,200 children lived in nursing homes;
and 1,100 lived in homes for individuals with physical disabilities.
Another 29,500 children were in facilities for the mentally ill, and
60,000 were in MR/DD facilities.[^413] The report did note that there
are 148,000 children in correctional facilities, on whom data on
disability was not available.

Of the 51 American million children ages 5 through 17 in 1994, less than
1 percent were likely to need LTSS; 1.3 percent had problems with
mobility; 5.5 percent with communication; 10.6 percent with learning;
12.3 percent needed help with one or more ADLs; and 0.9 percent were
likely to need LTSS for self-care. Fifty-nine percent of people with
MR/DD are under the age of 17; 38 percent are between 17 and 64 years of
age; and 3 percent are over the age of 65.[^414]

The leading causes of disability in children reported in the 1995 ASPE
summary were learning disabilities (1,372,200), speech disorders
(1,096,000), MR/DD (720,500), mental illness (462,800), and respiratory
conditions such as asthma (362,200). [^415]

### People Over Age 65

In 1999, people 65 years or older numbered 34.5 million. This represents
12.7 percent of the U.S. population, about one in every eight Americans.
The number of older Americans has increased 3.3 million (10.6) percent
since 1990, compared with an increase of 9.1 percent for the under-65
population. [^416]

Since 1900, the percentage of Americans over 65 has tripled, and the
number has increased 11 times, from 3.1 million to 34.5 million.[^417] A
child born in 1998 could expect to live 76.7 years, about 29 years
longer than a child born in 1900. The major part of this increase is due
to reduced death rates for children and young adults. Two million people
turned 65 in 1999 (5,422 per day). In the same year, 1.8 million people
65 years of age or older died, resulting in a net increase of 200,000
(558) per day.[^418] Life expectancy in the United States rose
dramatically in the 20th century from about 47 years in 1900 to about 73
years for males and 79 years for females in 1999. This increase is
mainly due to improvements in environmental factors, such as sanitation,
and the discovery of antibiotics.[^419]

By 2030, there will be about 70 million Americans over the age of 65.
People over 65 represented 13 percent of the population in 1999; this
percentage will grow to 20 percent by 2030. Minority populations are
projected to represent 25.4 percent of the elderly population in 2030,
up from 16.1 percent in 1999.[^420]

In 1998, the majority (67%) of the elderly was noninstitutionalized and
lived in a family setting. Approximately 10.8 million (80%) of older men
and 10.7 million (58%) of older women lived in families. The proportion
living with a family decreased with age. Forty-five percent of those
over 85 years lived in a family setting. About 13 percent of older
people (7% men, 17% women) were not living with a spouse but were living
with children, siblings, or other relatives. About 3 percent of men and
2 percent of women (718,000) of the older population lived with
nonrelatives.[^421] A small number (1.47 million, 4.3%) of the over-65
population lived in nursing homes in 1997, and the percentage increased
dramatically with age, ranging from 1.1 percent for people 65--74 years
to 4.5 percent for people 75--84 years and 19 percent for people over
the age of 85.[^422]

In 1999, 16.1 percent of people over age 65 were minorities: 8.1 percent
were African American, 2.3 percent were Asian, and less than 1 percent
were American Indian or Native Alaskan. Hispanic origins represented 5.3
percent of the older population.[^423]

In 1999, about half (52%) of people over age 65 lived in nine states:
California had over 3.6 million; Florida, 2.7 million; New York, 2.4
million; Texas, 2 million; and Pennsylvania, 1.9 million. Ohio,
Illinois, Michigan, and New Jersey each had over 1 million.[^424]

In 1999, people over 65 constituted 14 percent or more of the total
population in 10 states: Florida, 18.1 percent; Pennsylvania, 15.8
percent; Rhode Island, 15.6 percent; West Virginia, 15.1 percent; Iowa,
14.9 percent; North Dakota, 14.6 percent; South Dakota, 14.4 percent;
Connecticut, 14.3 percent; Arkansas, 14.2 percent; and Maine, 14
percent. In 11 states, the over-65 population increased by 17 percent or
more between 1990 and 1999: Nevada, 61 percent; Alaska, 55 percent;
Arizona, 31 percent; Hawaii, 30 percent; Colorado, Utah, and New Mexico,
23 percent; Delaware, 21 percent; South Carolina and North Carolina, 19
percent; and Texas, 17 percent.[^425]

  ----------------------- ----------------------- -----------------------
  Table 2.3. Population                           
  Projections Five-Year                           
  Age Groups[^426]                                

  **Age group**           **July 2004**           **July 2030**

  65--69 years            9,928,000               19,844,000

  70--74 years            8,375,000               17,878,000

  75--79 years            7,432,000               14,029,000

  80--84 years            5,432,000               9,638,000

  85--89 years            2,954,000               5,077,000

  90--94 years            1,351,000               2,457,000

  95--99 years            425,000                 1,015,000

  100 years and older     88,000                  381,000
  ----------------------- ----------------------- -----------------------

Twenty percent of people 65 and older (about 6 million) need some level
of LTSS. The mean age is 80.5 years and the person is most likely to be
a widowed white female. Forty percent who are living in the community
are cognitively impaired, with Alzheimer's disease, mental retardation
(7%), or senility, or have ADL needs. Forty percent living in the
community have informal care, 25.1 percent have both informal and formal
care, 4.6 percent have formal care, and 29.6 percent have care in an
institution.[^427]

The next few decades will bring an unprecedented increase in the size of
the elderly population. Major factors to consider in predicting the
impact of the aging population follow:

-   The aging U.S. population, in particular the growth in the
    proportion of the people age 85 and over, will place increasing
    demands on our fragmented LTC system. The demands are uncertain.

-   LTC will continue to be a woman's issue.

-   The LTC population will become more ethnically diverse.

-   Aging is not geographically uniform.

-   Americans are unprepared to pay for LTC.[^428]

#### Chronic Care Demographics

About 57 million working-age Americans, 18--64 years old, live with
chronic disease conditions such as diabetes, asthma, or depression. In
2003, more than one in five (12.3 million) people with chronic diseases
lived in families that had problems paying medical bills.[^429]

Chronic diseases---such as cardiovascular disease (primarily heart
disease and stroke), cancer, and diabetes---are among the most
prevalent, costly, and preventable of all health problems. Seven of
every 10 Americans who die each year (more than 1.7 million people) die
of a chronic disease. Chronic disabling conditions cause major
limitations in activity for more than 1 in every 10 Americans (25
million people).[^430]

Eight of the top 10 causes of death in the United States in 1997 were
due to chronic diseases: heart disease (31.4%), cancer (23.3%), stroke
(6.9%), chronic obstructive pulmonary disease (4.7%), pneumonia/flu
(3.7%), diabetes (2.7%), kidney disease (1.1%), chronic liver disease
(1.1%).[^431] Only unintentional injury (4.1%) and suicide (1.3%) are
not related to chronic disease.

The main contribution to chronic disease is exposure to risk factors,
such as tobacco use, unhealthful diets, lack of physical activity, and
alcohol use. [^432]

Estimates of chronic disease costs include the following:

-   More than 90 million Americans have a chronic illness.

-   Chronic diseases account for 70 percent of all deaths in the United
    States.

-   Medical costs of people with chronic diseases account for more than
    75 percent of the nation's \$1.4 trillion medical care costs.

-   Chronic diseases account for one-third of the years of life lost
    before age 65.

-   The direct and indirect costs of diabetes are nearly \$132 billion a
    year.

-   Arthritis annually results in estimated medical care costs of more
    than \$22 billion and estimated total costs (medical and lost
    productivity) of almost \$82 billion.

-   The estimated direct and indirect costs associated with smoking
    exceed \$75 billion annually.

-   In 2001, approximately \$300 billion was spent on all cardiovascular
    diseases. Over \$129 billion in lost productivity was due to
    cardiovascular disease.

-   Direct medical costs associated with physical inactivity were nearly
    \$76.6 billion in 2000.[^433]

Despite annual spending of over \$500 billion, half of the people with
chronic illnesses do not receive appropriate care:

-   27% of individuals with hypertension (high blood pressure) are
    adequately treated;

-   50% of diabetics have controlled blood sugar, lipid, and blood
    pressure levels;

-   35% of eligible people with atrial fibrillation receive
    anticoagulation;

-   25% of people with depression are receiving adequate treatment;

-   44% of people with heart failure who experience a hospital stay are
    readmitted with the same problem within six months;[^434]

-   50% of the elderly fail to receive pneumococcal vaccine; and

-   50% of heart attack victims fail to receive beta-blockers.[^435]

A large study examined 439 indicators of 30 chronic diseases (6,712
people) in the United States. Findings showed that people received only
54.9 percent of scientifically indicated care. The study concluded that
the "defect rate" in the quality of American health care is
approximately 45 percent. Recommendations of the study were to clarify
national goals for improvement, change the care delivery
processes/systems, change the organizations that deliver care, and
change the environment of professional medical practice.[^436]

Another rationale for unmanaged chronic care was found in a study of 6.6
million uninsured people living with chronic conditions, with almost
half reporting problems paying medical bills. Of the chronically ill
with medical bill problems, 42 percent went without needed care, 65
percent delayed care, and 71 percent failed to get needed prescription
drugs, all due to cost concerns.[^437]

Between 2001 and 2003, the proportion of low-income chronically ill
people with private insurance who spent more than 5 percent of their
income on out-of-pocket health care costs grew from 28 percent to 42
percent, a 50 percent increase to 2.2 million people. [^438]

Inequalities in income and education underlie many health disparities in
the United States. They are intrinsically related and often serve as a
proxy for each other. In general, population groups that suffer the
worst health status and chronic disease morbidity/mortality are those
that have the highest poverty rates and the least education. In 1996,
the total number of whites below the poverty level was 12 percent,
compared with African Americans (28 percent) and Hispanics (29 percent).
[^439]

According to a Kaiser Family Foundation survey in 2003, people with
disabilities use the health care system frequently, with more than half
(57%) having seen a physician four or more times in six months and 18
percent reporting two or more visits to the emergency room in the past
six months.[^440] While only 15 percent of the survey respondents say
they have no regular doctor, one in four reports having trouble finding
a doctor who understands his or her disability. When it comes to finding
a doctor who accepts their insurance, 17 percent of the sample reported
having had such problems, with higher rates reported by those covered by
Medicaid.[^441] Seventeen percent of those with a mental disability said
the cost of mental health services is a serious problem for them.
Prescription drug costs affected 32 percent of the respondents, and 36
percent of those taking prescription drugs admitted having skipped doses
of the drug, split pills, or gone without filling a prescription.
Twenty-one percent of the people who use equipment to manage their
disability say they have serious difficulties paying for it.[^442] Those
with disabilities were less likely than the general population to
receive preventive services and they received those services
considerably less frequently than is generally recommended. Less than
half of all female respondents reported having a mammogram in the past
year, and only about a third of all men reported having a prostate
examination. Only 41 percent reported having a dental examination in the
past year.[^443]

### Racial and Ethnic Disparities

Healthy People 2010 cites race and ethnicity differences as a factor in
chronic disease mortality and morbidity. The U.S. infant mortality rate
is down, but the infant death rate among African Americans is still more
than double that of whites. Heart disease rates are 40 percent higher
for African Americans than for whites. The death rate for all cancers is
30 percent higher for African Americans compared with whites; for
prostate cancer, it is more than double than for whites. The death rate
from HIV/AIDS for African Americans is more than seven times than that
for whites. Hispanics living in the United States are twice as likely to
die from diabetes than non-Hispanic whites. Although constituting only
11 percent of the total population in 1996, Hispanics accounted for 20
percent of the new cases of tuberculosis. Puerto Ricans have a low
infant birth-weight rate that is 50 percent higher than that for whites.
Hispanics also have higher rates of high blood pressure and obesity than
non-Hispanic whites.[^444]

By 2050, people of color are expected to make up nearly half of the U.S.
population.[^445] A study analyzed data on 419,843 children 17 years and
younger from 1979 to 2000 and found 22,758 with disabilities living in
the community.[^446] Disparities in the prevalence of ADL difficulties
caused by chronic conditions or disability in the black and white
non-Hispanic population were found to increase over time. Black children
had higher prevalence rates in disability, due in part to differences in
poverty status. The prevalence of difficulty with ADLs for white
children increased over time to 47 percent---or 40.7 per 1,000 to 59.7
per 1,000 children in the population. For black children, the prevalence
increased 77 percent---or 37.9 per 1,000 to 67.1 per 1,000 children in
the population. Black children were 13 percent more likely than white
children to have a reported activity limitation.

The prevalence of disability caused by chronic conditions has increased
markedly for both black and white children. In the past, white children
were in the mild chronic category. Researchers believe that the higher
rates of disability are due, in part, to the increased exposure to
poverty, racial disparities, lack of education, social opportunities,
restricted access to care, increased exposure to environmental causes of
disability, poor nutrition, and poor quality health care.

The death rate for 13 to 15 leading causes of death are higher and life
expectancy is lower for black Americans than for white Americans. Asthma
prevalence rates are higher for blacks, and there are more premature
births and deaths in infancy.

The Kaiser Family Foundation reported nonelderly uninsured rates by race
and ethnicity in 2003: 13 percent white; 20 percent Asian/Pacific
Islander; 21 percent black; 28 percent American Indian and Native
Alaskan; other, 1.8 percent; and 34 percent Latino.[^447]

Combined, 36 percent of the 53 million Americans with disabilities are
black and Latino (U.S. Census Bureau 2000). A recent GAO studied
confirmed that the black population has higher disability rates, lower
lifetime earnings, and shorter life expectancy than whites.[^448]
Sixteen percent of workers who are black die before the age of 62.
Twenty-seventy percent of the Social Security Disability Insurance
(SSDI) benefits are for the black and Latino population. The study found
that people of color are receiving more public benefits over a lifetime
then they contribute in payroll taxes. [^449]

The demographic profile of individuals receiving both Medicaid and
Medicare (7 million dual eligibles) shows that 4 million dual eligibles
are mostly nonwhite widowed women over the age of 65 with multiple
chronic disabilities. The dual eligible population is a major factor in
the current problem, as it represents about 14 percent of the Medicaid
population. In FY 2000, of the total Medicaid service spending of
\$168.1 billion, \$70.8 billion or 42 percent was attributed to dual
eligibles in payment for Medicaid covered benefits and in deductibles
and coinsurance for Medicare services.[^450]

### Summary

If not addressed, the issues of poverty, lack of insurance, and
continued segregation from affordable and consistent health care will
increase the future needs and costs for LTSS. The increase in disability
and prevalence in young black and white children cannot be ignored as we
seek to design LTSS policy for the future. Despite disagreement among
researchers, policymakers, and the consumer populations as to
appropriate methods to define and determine which person with a
disability has unmet needs, there is a common understanding that the
number of people in need is growing at a rate that is far beyond current
capacity of federal programs to respond.

The next section will provide an overview of the current pathways to
LTSS for people with disabilities and the change in purpose, services,
eligibility, and costs.

## Part IV Lowering the Lifeboats 

*Medicaid's expanding purposes, pathways, services, and costs for people
with disabilities.*

The grandfather of LTSS is Medicaid,[^451] whose original purpose was to
provide health care and nursing home care to very low-income families
with dependent children, poor elderly, and disabled individuals.[^452]
The concept of LTC was not developed in the early years of Medicaid, and
nursing home care represented the narrow scope of what it meant to age
in America in the 1960s. Today, there are many additions to the original
federal Medicaid purpose that reflect the growing trend for
beneficiaries to receive services and supports in the home and the
community and less in the nursing home. In FY 2003, 53.0 million
Americans were enrolled in Medicaid, including 24.8 million children and
13.6 million aged, blind, or disabled individuals.[^453] Total Medicaid
assistance payments for FY 2002, not including administration, were
"\$246.3 billion and the four largest categories were: nursing
facilities--19.3% of the total; inpatient services (general and mental
hospitals)--14.3%; prepaid health care (capitation payments--managed
care organizations)--13.3%; and prescription drugs--9.5%."[^454]

The relevance and purpose of LTSS for Americans with disabilities has
never been more important as the United States addresses its current
social and fiscal obligation to meet the growing demands of an increased
disability and aging population over the next century. The concept of
LTSS for people with disabilities has evolved over the past 40 years as
the expectations and image of people with disabilities has changed.
Clearly, in order to work, people with lifelong impairments need access
to affordable nonmedical supports and services, as well as ongoing
reliable and affordable health care. For aging Americans with
disabilities, the same holds true---all need affordable supports and
services and health care to maintain dignity and independence.

State Medicaid programs receive their funding from federal Medicaid
funds that are not capped and rise to meet state Medicaid spending. The
match from federal Medicaid depends on a state's per capita income---the
higher the income, the lower the match. Nationally, the federal match
pays for roughly 57 percent of total Medicaid spending.[^455] Geography
plays an important role in the uneven distribution of services and
supports, because poorer states often have fewer resources to spend,
larger populations of seniors to serve, and higher disability
rates.[^456] The menu of services under Medicaid is listed in state
plans. Mandatory services are services that all states opting to have a
Medicaid program must provide to all of their citizens. Optional
services are additional and states can limit the number of enrollees and
services. [^457]^,^ [^458]

**Mandatory Medicaid services that all states must cover include the
following**: hospital care (inpatient and outpatient); physician
services; laboratory and X-ray services; family planning services;
health center and rural health clinic services; nurse midwife and nurse
practitioner services; early and periodic screening, diagnostic, and
treatment (EPSDT) services and immunizations for children under age 21;
nursing home care; and home health services for those eligible for
nursing home care.[^459]

**Optional services that states may choose to cover include the
following:** basic medical and health care services (including
prescribed drugs);[^460] services that support people with disabilities
to live in their communities, such as personal care services (37 states
offer personal care, 2003); rehabilitative and or clinic services (29
states offer rehabilitative services, 2003); case management services
(49 states, 2003); and small group homes that operate as intermediate
care facilities for persons with mental retardation and developmental
disabilities for 15 or fewer residents; aides, therapies, and related
professional services.[^461] Services involving short- or long-term
institutional stays include inpatient psychiatric hospital services for
children and young people under age 21; nursing facility services for
children and young people under age 21; ICF/MRs with more than 15
residents; inpatient hospital services for people age 65 or older with
mental illness in institutions for mental diseases (IMDs); and nursing
facility services for people age 65 or older with mental illness in
IMDs.[^462]

Medicaid's purpose and scope and pathways to services grew and by the
1980s there were more than 50 distinct population groups wanting to
become eligible in states programs.[^463] Many new eligibility pathways
were added to the Medicaid statute, including coverage of higher income
children and pregnant women as well as other elderly and disabled
individuals.[^464] Most recently, the Medicaid statute allowed states to
extend benefits to women with breast or cervical cancer, uninsured
individuals with tuberculosis, immigrants (with certain conditions), and
certain other working individuals with disabilities.[^465] Today, more
than one-third of Medicaid beneficiaries participate in new pathways
added since the 1980s; the introduction of HCBS waivers and other
programs has allowed for insurance coverage of vulnerable populations
not previously eligible.[^466]

In a 2005 report to the National Governors Association (NGA),
researchers from Health Management Associates report that Medicaid's
\$300 billion program (\$134 billion is for LTC programs)[^467] has
mushroomed into a constellation of several programs that include the
following:

-   an insurance program for low-income, uninsured children and some
    parents and pregnant women;

-   a program of chronic care and LTC for people with disabilities,
    mental illness, and low-income elderly;

-   a supplement to Medicare for low-income seniors and people with
    disabilities, and a support for those awaiting qualification for
    Medicare on the basis of permanent disability; and

-   a source of funding for safety nets for hospitals and community
    health centers that serve a disproportionate share (DHS) of the
    uninsured. [^468]

The report made the distinction that two-thirds of Medicaid spending is
for population groups and services technically defined as optional and
90 percent of all LTC Medicaid services today fall under the optional
category.[^469] States are making cuts to many of the optional services
as they struggle with the addition of 8.4 million beneficiaries and a
one-third increase in program spending between 2000 and 2003.[^470] In
2003, 49 states and the District of Columbia implemented Medicaid cuts,
according to the Kaiser Commission on Medicaid and the Uninsured, and 32
states revisited their initial cuts and made more. Cost-containment
measures implemented included the following: 37 states reduced or froze
provider payments to hospitals and nursing homes; 45 states implemented
prescription drug cost controls; 27 states report that they cut or
restricted Medicaid eligibility; 25 states reduced benefits; and 17
states increased copayments.[^471]

The Kaiser Commission Report added that a number of states were planning
further cuts to their LTC spending and medically needy programs (allows
individuals to "spend down" to qualify by reducing medical expenses from
income) and that *any* cuts could affect access to health care for
people with disabilities who rely mainly on Medicaid for a number of
important services.[^472] Reform proposals over the past few years have
suggested federal caps for Medicaid spending that would eventually phase
out optional services; these services would either be institutionalized
by the states, and the costs absorbed, or they would no longer be
offered due to lack of funds. Any cuts to the current menu of optional
benefits would erode services and supports that are the lifeline for
millions of low-income people with disabilities. [^473]^,^ [^474]

Low-income people with disabilities have benefited from the growing
purpose of Medicaid and continue to enter the program through a complex
mix of mandatory and optional pathways for eligibility.[^475]

The following highlights of the mandatory and optional pathways that are
specific to people with disabilities under Medicaid provide an overview
of the programs, the states involved, and, in some instances, the costs.

### Mandatory

-   ***Supplemental Security Income (SSI): This is a means-tested cash
    assistance, mandatory program for aged, blind, and disabled
    individuals*** whose incomes are less than 74 percent of the federal
    poverty level. ***One exception is the "209(b) option that allows
    states (about 11 states in 2004) to set eligibility standards that
    are more restrictive than current SSI standards,"*** using SSI
    income, resource, and disability standards in place on January
    2, 1972. Individuals who qualify for SSDI may also qualify for
    Medicaid.[^476]

-   ***Qualified Medicare Beneficiary (QMB): This applies to certain
    low-income individuals (\<100% of poverty) who have disabilities as
    defined under SSI and who are eligible for Medicare cost-sharing
    expenses paid by Medicaid.*** Medicaid pays Medicare Part B
    premiums, deductibles, and coinsurance for Medicare-covered benefits
    but no Medicaid benefits unless individuals qualify for Medicaid
    through other eligibility pathways (e.g., via SSI, medically needy,
    or the special income rule.)

-   ***Specified Low-Income Beneficiary: This applies to individuals who
    are eligible for Medicare cost-sharing and whose incomes are less
    than 100--120 percent of poverty.*** Medicaid pays Medicare Part B
    premium.

### Optional[^477]

-   ***State Supplemental Payment (SSP) benefits with state-only
    dollars*** on a monthly basis help cover items such as food,
    shelter, clothing utilities, and other daily necessities. SSI
    applicants must be allowed to deduct medical expenses from their
    income when determining financial eligibly for Medicaid. This is
    sometimes referred to as "spend down" and is critical to working
    people with disabilities. (In October 2001, 21 states reported
    providing this coverage to people with disabilities and 3 states
    provided this coverage only to people who are blind.)[^478]

-   ***Omnibus Budget Reconciliation Act of 1986 offered states an
    option for covering people whose income exceeds SSI or 209(b) levels
    up to 100 percent of the*** ***federal poverty level***. In 2003, 20
    states and the District of Columbia used this option.

-   ***Special income rule, the "300 percent" rule,*** allows states to
    extend Medicaid to certain individuals with incomes too high to
    qualify for SSI, but who are eligible for nursing facility or other
    institutional care. The Miller Trust allows applicants under this
    rule to place income in excess of the special income level into a
    trust, making the state the beneficiary after death.

-   ***Medically Needy Program*** extends Medicaid coverage beyond the
    aged and people with disabilities to families with children who do
    not meet the applicable income (or resource) requirements for other
    eligibility pathways. States may set their medically need monthly
    limits for a family of a given size at any level up to 133 1/3
    percent of the former AFDC (now TANF) program standard. (In FY 2003,
    35 states and the District of Columbia had medically needy programs,
    and 33 of these programs were extended to people age 65 and older
    and people with disabilities.)

-   ***Rules for working people with disabilities on SSI*** are linked
    to an individual's ability to work and earn income and "engage in
    substantial gainful activity" (SGA). A person is considered able to
    engage in SGA if his or her earnings exceed \$830 per month for
    2005; \$1,380 for people who are blind. Under a waiver called
    1619(a), SSI law permits states that extend Medicaid to SSI working
    recipients to receive Medicaid even when they are working above the
    SGA level. As an individual's earnings increase, his or her cash
    benefits are gradually reduced through a special income disregard
    formula.[^479]

-   ***Ticket to Work and Work Incentives Improvement Act of 1999
    (TWIIA)*** ***allows states to raise their Medicaid income and asset
    limits for individuals with disabilities who work.*** States may
    require that working individuals with disabilities "buy-in" to the
    Medicaid program by sharing in the costs of their coverage.
    ***Medicaid buy-in*** allows states to expand Medicaid coverage to
    working individuals with disabilities between the ages of 16 and 34,
    with incomes and resources as defined by the state, and allows
    states to impose premiums and other cost-sharing on individuals who
    qualify (in 2002, 25 states).[^480] ***Under TWIIA, the medical
    improvement group option*** targets individuals with cyclical or
    periodic disabilities who are working at the federal minimum wage at
    least 40 hours a month or who meet other definitions approved by
    HHS. Three states currently participate in this option: Connecticut,
    Indiana, and Missouri.[^481]

-   ***Katie Beckett Option*** allows children to stay in their homes
    who would otherwise be institutionalized, and parents' income are
    not attributed (21 states have this option). Tax Equity and Fiscal
    Responsibility Act 1982.

-   ***Home- and Community-Based Service Waivers*** allow states,
    through a waiver process, to provide at-risk individuals with
    services at home (49 states use HCBS waivers, introduced in 1981 and
    currently serving almost 1 million Americans.) The federal HCBS
    waiver authorized by Congress in 1981 is the principal Medicaid
    program that underwrites LTSS for the MR/DD population in the United
    States.

    Federal spending for HCBS grew for MR/DD from \$1.2 billion in 1982
    to \$7.2 billion in 2002. The average state ICF/MR cost in 2002 was
    \$134,619 per resident per year, compared with the HCBS cost per
    participant of \$35,215.[^482] The waiver provides the financing
    mechanism for states to expand their menu of community supports that
    promote economic independence and self-sufficiency for people with
    MR/DD. State data revealed that by 2002 all states but Mississippi
    were spending more for community services than for institutional
    services.[^483]

    In 2002, national spending for MR/DD was \$34.6 billion, and
    combined individual and family support spending of \$4.4 billion
    constituted 13 percent of nationwide funding; 53 percent was
    allotted for supported living and personal assistance; 32 percent
    for family support, and the remaining 15 percent funded supported
    employment activities.[^484]

    For FY 2003, HCBS increased 9.3 percent from \$16.9 billion to
    \$18.6 billion.[^485] Three-fourths of HCBS waivers (nearly \$14.0
    billion) are used to purchase LTSS for people with MR/DD.[^486]

    The other 25 percent of waiver expenditures were for people with
    physical disabilities and older people and totaled \$4.2 billion in
    FY 2003: Brain injuries accounted for \$163 million (a 59% increased
    from FY 2002); HIV or AIDS and technology-dependent or medically
    fragile people accounted for an additional 0.9 percent of all waiver
    spending (about \$167 million in FY 2003). There were three small
    waiver programs, which served individuals with a primary diagnosis
    of mental illness, accounting for 0.2 percent of HCBS waiver
    expenditures.[^487]

-   ***Family Support Services*** for MR/DD consist of any
    community-based services administered or financed by the state MR/DD
    agency that provide "vouchers, direct cash payments to families,
    reimbursement, or direct payments to service providers which the
    state agency identified as family support."[^488] Examples of family
    supports are "cash subsidy payments, respite care, family
    counseling, architectural adaptation of the home, in-home training,
    sibling support programs, education and behavior management
    services, and the purchase of specialized equipment."[^489] All 50
    states reported a family support initiative in 2002 (the District of
    Columbia did not provide a family support initiative).

-   ***Supported Employment*** began in the early 1980s as long-term
    support for workers with developmental disabilities to enhance and
    supplement the states' vocational rehabilitation services already in
    place. Supported employment refers to "small business enterprise,
    work crews, enclaves within industry and individual job
    placements."[^490] The research in this field overwhelmingly shows
    that people with developmental disabilities want paid jobs in the
    community. In 2002, 24 percent of all vocational and day program
    participants in the United States worked in supported or competitive
    employment and the other 76 percent received services in sheltered
    employment, day activity, or day habilitation programs. States spent
    \$662,768,320 in 2002 on supported employment for 112,417 MR/DD
    participants.[^491]

    HCBS waiver spending for supported employment grew since the
    Balanced Budget Act of 1997 removed the requirement that
    HCBS-supported employment participants be previously
    institutionalized.

-   ***Supported Living*** for MR/DD is "housing in which individuals
    with MR/DD choose to live and ownership is by someone other than the
    support provider and the individual has an individualized support
    plan." Forty-seven states reported providing supported living
    services to 95,223 individuals in 2002, at a cost of \$2.0 billion.
    The national average for supported living was \$20,643, with a range
    of \$2,196 in Mississippi to \$124,544 in Oklahoma.[^492]

-   ***Personal Assistance*** is "support provided to people living in
    their own homes financed by either state funds or federal/state
    Medicaid funds and defined by the state as 'personal
    assistance.'"[^493]

    In 2002, for MR/DD, 22 states had initiatives with combined
    supported living and personal assistance spending of \$2.3 billion,
    which constituted 7 percent of the total MR/DD spending. Expenditure
    data ranged from \$844 in West Virginia to \$89,354 in Oklahoma,
    with a national average of \$14,146.[^494] The Federal Government
    has encouraged supported living through legislation: The Medicaid
    Community Supported Living Arrangement (CSLA) legislation enacted in
    1990 endorsed supported living principles and provided funding for
    eight states to establish statewide supported living initiatives.

Medicaid spending for acute care and LTC combined in 2002 was \$91,889
billion for the blind/disabled category compared with \$51,733 billion
for the aged, \$31,247 billion for children, \$23,493 billion for
adults, and \$4,282 billion for foster care children.[^495] Spending for
the aged was higher in two service categories compared with the same two
service categories for the blind/disabled: (1) LTSS spending for the
aged was \$35,242 billion versus \$29,554 billion for the
blind/disabled; (2) nursing facility services spending for the aged was
\$30,002 billion versus \$8,770 billion for the blind/disabled. Personal
support services were higher for the blind/disabled---\$8,262 billion
compared with \$3,505 billion for the aged.[^496] The aged and
blind/disabled categories combined represent 15 percent of the total
Medicaid population.

### Summary

The growth of eligibility pathways for Medicaid beneficiaries with
disabilities and the rising costs reflect the intense needs of its major
beneficiaries: people with mental retardation and developmental
disabilities. Reform efforts to date have been incremental and represent
the path of least resistance. As the country ages and more people enter
Medicaid, it is unclear how the current fiscal safety net for the MR/DD
population can be sustained by states that will be addressing the
additional costs of prescription drug benefits as well.[^497]

The changes to the Medicaid program have become the path of least
resistance for incremental reform. Part V will describe the many
challenges in forecasting future demographic trends and gaps in services
and supports.

## Part V Approaching the Iceberg

*Economic and financial challenges to reform.*

### Global Challenges

The current agenda for 21st century Americans with disabilities must
include a clear examination of how aging (both at home and abroad) will
affect the economic well-being of people with disabilities to live fully
independent and meaningful lives. A 2005 report by McKinsey & Company
found that aging will cause a global wealth shortfall over the next two
decades and that growth in household financial wealth will slow by more
than two-thirds (from 4.5 percent historically to 1.3 percent going
forward), with the United States the largest source of the global
shortfall (\$19 trillion) because of its dominant share of global
wealth.[^498] Left unchecked, this trend "could significantly reduce
future economic and health care needs of aging populations."[^499]

The staff at the International Monetary Fund in January 2004 reported
that the growing imbalance between what the U.S. Government has promised
to pay in future benefits and its expected revenues would require "an
immediate and permanent 60 percent hike in the federal income tax, or a
50 percent cut in Social Security and Medicare benefits."[^500] Many
federal reports confirm the growing fiscal insolvency of these programs,
using different economic models and projections of costs, and all agree
that the current growth is unsustainable.[^501]^,^ [^502]

America is also highly dependent on foreign capital and is currently
importing far more goods and services than it is exporting; it is
becoming more indebted to foreign countries.[^503] Western Europe and
Japan are aging more rapidly than the United States and may need
additional capital to finance their own growing deficits. The growing
global debt due to the war on terror and other factors combined with the
rising costs for health care and the growing number of seniors without
sufficient retirement income to cover their LTC responsibilities place
major pressure on current federal programs like Medicaid.

In his forward to Jeffrey Sachs' book *The End of Poverty---Economic
Possibilities for Our Time*, Bono wrote that America "can be the
generation that no longer accepts that an accident of latitude
determines whether a child lives or dies---but will we be that
generation?" Sachs' premise is that we can end poverty in the world in
this generation if we choose, and he lays out an extraordinary plan to
do so. America has its own poverty right now and, although it is much
unlike the extreme poverty Bono and Sachs talk about, these Americans
are in need of their own champions and a plan. People with disabilities
are the poorest of the poor---among working adults, "nearly 40% of
people with disabilities have family incomes less than 200% of poverty
compared to 22% of the non-disabled."[^504]

As discussed in chapter 1, the United States is a noncontender in the
life expectancy race compared with other countries that spend much less
per capita. The World Health Organization's (WHO) Disability-Adjusted
Life Expectancy measure is used to examine health data in every nation
in the world, starting with life expectancy then subtracting years of
ill health after weighting the level and duration of each
disability.[^505] In the 2000 survey, the United States came in 24th for
life expectancy at 70 years. The survey found that Americans die earlier
and spend more time disabled than people in most other industrialized
countries. One WHO executive said that "portions of our population are
very poor and suffer from the poor health more characteristic of a poor
developing country rather than a rich industrialized one."[^506]

The disparities in health outcomes and disability are increasing for
Americans under age 65 because of poverty, rising rates of obesity and
diabetes, and increased longevity for individuals with lifelong
disabilities, such as Down syndrome and mental retardation. The
disparity in poverty rates is evident among seniors: 8.3 percent of
whites live in poverty compared with 22.7 percent of black seniors and
20.4 percent of Hispanic seniors. The highest poverty rate (58.8%) is
experienced by older Latino women who live alone.[^507]

Healthy People 2010 estimated that direct medical and indirect annual
costs associated with disability are more than \$300 billion, or 4
percent of the gross domestic product (GDP). This total cost includes
\$160 billion in medical care expenditures (1994 dollars) and lost
productivity approaching \$155 billion.[^508]

### Federal Roles in Financing LTSS

Medicare and Medicaid programs are the fastest growing entitlement
programs and together account for 62.5 percent of the \$151.2 billion
spent on LTSS in 2001.[^509] Medicaid's federal share as a percentage of
GDP will grow from today's 1.5 percent to 2.6 percent in 2035 and 4.8
percent in 2080.[^510] Medicare's federal share will triple as a share
of GDP from 2.7 percent to 7.5 percent by 2035 and reach 13.8 percent in
2080. Social Security spending will grow as a federal share of the GDP
from 4.3 percent today to 6.3 percent in 2035 and will reach 6.4 percent
in 2080. Combined, all three programs are projected to double by
2035.[^511] If the current federal health and retirement programs
continue to grow at these rates, by 2040 federal revenues will be
adequate to pay little more than interest on the federal debt.[^512] By
2010, the share of the population age 65 and older will begin to climb,
with profound implications: Social Security and Medicare (the Hospital
Insurance portion) are pay-as-you-go programs---as the ratio of workers
to retirees declines, so will the income for these programs.[^513]

The GAO report also found that the prevalence of disability will go up,
although it has had a steady decline over the past 16 years (it was
noted earlier that the reasons may be environmental rather then
health-related.) In 2000, one in five adults had unmet needs for LTSS.
That need is expected to double by 2020.

States do not have the fiscal capacity to assume the primary role for
their aging and disability populations without significant federal
participation. The following data describes how integral the federal
role is in partnership with states to finance current LTSS:

-   ***Of the \$1.24 trillion spent on all U.S. personal health care
    services in 2001, \$151.2 billion (12 percent) was spent on
    LTSS.***[^514]

-   ***Total Medicaid Spending for acute care and LTSS in 2003 was
    \$276.1 billion and exceeded net outlays for Medicare.***[^515]
    ***The federal share for Medicaid in 2003 was \$161.0.***

-   ***Total spending for LTSS was \$150.2 billion in 2001; Medicaid
    financed 48 percent, or \$73.1 billion, of the federal share,***
    with 64.3 percent covering care in nursing facilities and ICF/MRs
    and the balance spent on HCBS. The national average Medicaid nursing
    home payment is \$97 per day or \$2,942 per month. There is
    variation by state; for example, Florida has an average monthly
    Medicaid nursing home cost of \$3,496 compared with Iowa's average
    monthly cost of \$2,275. The average U.S. annual cost of assisted
    living is \$28,548.[^516]

-   ***Medicare financed 18.0 percent, or \$33 billion, of total LTC
    expenditures in 2003,*** with 54 percent for skilled nursing
    facility care and the balance for home health care.[^517]

-   ***Families and individuals financed 20 percent, or \$38 billion, of
    out-of-pocket expenditures in 2003,*** mostly for nursing home care
    (82%).[^518] In the early 1960s, nearly half of health care spending
    was financed by individuals, with the rest provided by public
    programs and health insurance.[^519] By 2002, individual
    out-of-pocket spending at the point of service was estimated to be
    14 percent.[^520]

-   ***Donated care represented 36 percent of LTSS care in 2004, at a
    cost estimated between \$103 and \$218 billion.***[^521] Using the
    \$218 billion estimate, this represented approximately \$24,000 per
    senior.

-   ***Private LTC insurance represented 9.6 percent (\$16 billion) of
    all U.S. spending on LTC insurance in 2003,*** with 52 percent for
    nursing home care and the balance for home health care.[^522]

-   ***Other federal programs provided 5.9 percent, or \$151.2
    billion,*** for 2001 and included the Older Americans Act and the
    Social Services Block Grant (SSBG) program (Title XX of the Social
    Security Act), both of which fund a variety of community-based
    services. In 2001, the Older Americans Act was amended to authorize
    the National Family Caregiver Support Program (NFCSP), which offers
    assistance to family caregivers of the frail elderly. Some states
    supplement SSI to help low-income individuals pay for HCBS or to
    reside in nonmedical residential settings such as board and care
    homes. Certain programs under the Rehabilitation Act of 1973 provide
    a range of supportive services to people with disabilities. The
    Department of Veteran Affairs (VA) provides a wide range of LTC
    services to the nation's veterans that include nursing home,
    domiciliary, home health care, and assistance to caregivers. Tax
    benefits for LTC include a limited deduction for LTC expenses and
    insurance premiums, tax-exempt insurance benefits, and the dependent
    care tax credit.[^523]

GAO, in "21st Century Challenges: Reexamining the Base of the Federal
Government," provided policymakers and government agencies with a
compendium of areas considered ripe for review and reexamination, along
with a framework for evaluating and identifying the issues and
solutions. Question 4 of the GAO framework concerns affordability and
cost-effectiveness. If we inserted LTSS into the formula, this is how
the questions would look:[^524]

-   Are LTSS affordable and financially sustainable over the long term,
    given known cost trends, risks, and future fiscal imbalances?

-   Is LTSS using the most cost-effective or net beneficial approaches
    when compared to other tools and program designs?

-   What would be the likely consequences of eliminating the program,
    policy, function, or activity?

-   What would be the likely implications if its total funding is cut by
    25 percent?

It is clear from the research that the current funding mechanisms to
support LTSS (primarily coming from Medicaid) are exceeding states'
capacity and still not providing many of the services needed for a
growing younger and older population that is not MR/DD or on Medicaid.
In addition to the patchwork system of publicly financed LTSS, private
LTC insurance is an alternative financing strategy.

### Medicaid and Private Insurance

The sources for individual health care coverage for the elderly and
people with disabilities are Medicare, Medicaid, and private insurance.
All health care coverage plans have certain covered services and gaps in
coverage. The type of health care coverage determines access to the kind
of care and services and supports people with a disability over and
under age 65 receive. Each health care coverage plan covers different
services and different populations.

Medicaid provides coverage for most medical services, mental health
care, LTC, and prescription drugs. The single benefit used by the
largest number of Medicaid recipients is prescription drugs. In FY 2002,
24.4 million Medicaid beneficiaries used this benefit, followed by
physician services, which were used by 22.1 million recipients.[^525]
(The prescription drug benefit will shift to Medicare in 2006, and it is
unclear what the impact of this change will be for people with
disabilities, particularly those receiving both Medicare and
Medicaid.)[^526]

Fourteen percent of the U.S. population (40.8 million) used Medicaid and
the State Children's Health Insurance Program (SCHIP) in 2001 as their
primary source of health insurance.[^527] Enrollees are described as
"heterogeneous" in terms of the duration of their enrollment and the
extent to which they rely on Medicaid and SCHIP as their sole source of
coverage.

The CRS described three distinct groups using Medicaid and SCHIP in
2001:[^528]

-   ***18.8 million relied solely on both Medicaid and SCHIP for the
    entire year;*** 69 percent were children under age 19 and none were
    aged.

-   ***12.3 million used both Medicaid and SCHIP for part of the year***
    and were uninsured for two-thirds of the months they spent without
    Medicaid/SCHIP. Job-based health insurance covered nearly all of the
    remaining months; 1.8 million experienced a loss of job-based
    coverage during the year, and 61 percent were linked to
    policyholders (spouse or parent) who experienced substantial
    disruption in their employment and insurance status. An additional
    14 percent were linked to policyholders who were employed but
    experienced a drop in wages.[^529]

-   ***9.7 million never relied solely on Medicaid*** during the year
    and had other sources of coverage; under 23 percent were children,
    but nearly half (46%) were aged. [^530]

The report highlights the common theme of poverty across these three
groups, as well as differences by race. Thomas Shapiro found that two
out of every five American families do not have enough money to live at
the poverty line for three months and defines this phenomenon as being
"asset poor."[^531] Fifty-four percent of black families are asset poor
compared with 26 percent of white families. It is estimated that only 7
percent of American seniors have enough resources for one year of
nursing home care, [^532] and that cost of care is 20 percent higher in
urban areas than in rural areas. In New York, California, and
Massachusetts, the cost of urban care was found to be 40 percent higher
than in nonurban areas.[^533]

The demographics of the Medicaid insured population, when broken into
the three categories above, suggest a high vulnerability to rising
health care costs and dependence on family members (69% of 12.8 million
children) for coverage. The growth in spending and enrollment is due in
part to downturns in the economy; the increase in health premiums (in
2001, job-based health insurance premiums increased by 10.9% while
workers' earnings and overall inflation increased by less than half that
amount); and the availability of expanded covered under public programs
like Medicaid/SCHIP.[^534]

The Economic and Social Research Institute found that nearly 49 percent
of the uninsured are either self-employed or work at firms with fewer
than 25 workers or for companies with fewer than 10 employees, of which
only 52 percent offer insurance.[^535] Over 50 percent of low-income
employees of small firms with incomes below 200 percent of the federal
poverty level are uninsured.[^536] A 1999 report of the President's
Advisory Commission, "Consumer Protection and Quality in the Health Care
Industry," found that 600,000 of the 2 million health care
paraprofessionals (nursing aides, home health aides, and home care
aides) do not work full time and receive benefits and report wages below
the poverty line.[^537] (For an in-depth review, see "Supply and Demand
Puzzle" in this section.)

#### Private Insurance

Over 6 million Americans own LTC insurance (about 10% of the U.S.
population) and 50 percent of the claims paid are for Alzheimer's and
other forms of dementia.[^538] Genworth Financials (which provides LTC
to 15 million customers in 22 countries) reports that cognitive claims
since 1993 have increased 35 percent and that the annual dollar amount
paid out has experienced a twelvefold increase, reaching approximately
\$120 million for cognitive care claims in 2003.[^539] The allocation of
cognitive claims was noted as moving from nursing homes to home health
care and assisted living facilities.

Thomas Stinson, CEO of Genworth Financials, has more than 30 years of
experience in the LTC insurance business. In his testimony before
Congress, he reported that the average age of people buying LTC
insurance has shifted dramatically from postretirement to
preretirement---from age 69 to age 59.[^540] Ten percent of those age 65
and older entering nursing homes will be there for five years or more,
with average costs for 2004 at \$179 per day; assisted living facilities
cost \$79 per day; and certified home care is about \$20 per hour. The
top 13 companies providing LTC insurance had paid out \$8 billion in
claims through 2002 and offer policies to individuals ranging in age
from 18 to 99; they provide a \$50 to \$600 per day benefit.[^541]
Stinson confirmed what many studies have reported (see chapter 1, public
opinion): that many Americans underestimate the financial risks involved
with aging and do not understand the limits of Medicare. The focus of
Stinson's testimony to Congress was on the aging population and not the
specific needs of people with disabilities under the age of 65. However,
the fact that 50 percent of LTC policies are covering cognitive claims
suggests that more research is needed on the type of insurance coverage
required by people under age 65.

#### State Partnerships for Long-Term Care and Medicaid

The National Association of Health Underwriters (NAHU) was represented
at the April 19, 2005, hearing of the U.S. House of Representatives Ways
and Means Committee on Long-Term Care; association representatives
testified that 8 out of 10 people in America are not insured for the
catastrophic expense of nursing home care (currently estimated at
\$70,000 annually).[^542] Janet Trautwein of NAHU testified that the LTC
partnership programs currently being offered in several states provide
incentives for individuals who purchase private insurance and exhaust
their benefits provided by the LTC insurance partnership policy to
receive Medicaid as the payer for their LTC expenses. Policyholders are
allowed to keep personal assets equal to the benefits paid by the
original LTC policy. Mark Meiners also testified at this hearing that
the partnership program can save Medicaid costs and that projected
potential savings by 2017--2020 would produce a 7 percentage point
decline in Medicaid's share of the LTC bill.[^543] Current savings are
in the range of \$8 to \$10 million.[^544]

#### Disability Insurance

The lack of disability insurance was described as the "missing piece in
the financial security puzzle" for Americans with disabilities and is an
indication that the public underestimates the risk of having a
disability.[^545] The Task Force for the Disability Chart Book found the
following:

-   The risk of a disability during a worker's career is significant, as
    are the consequences to the individual and family financial
    security. (The increase in SSDI beneficiaries confirms this first
    finding.)[^546]^,^ [^547]

-   The risk of disability is higher than premature death and is higher
    for older people than younger people, and females are more likely to
    become disabled than males. The majority of disabilities are caused
    by illnesses and not serious accidents (p. 4).

-   Females have the highest risk of disability at age 35, at 29
    percent, compared with a 20 percent risk for males (p. 7).

-   The financial risk of disability is great and stops income and
    prevents retirement savings. A 45-year-old, currently earning
    \$50,000 per year and suffering a permanent disability, could lose
    \$1,000,000 in future earnings (p. 13).

-   The public may overestimate the help that is available from public
    disability insurance programs (SSDI and other state-mandated,
    short-term programs provide a safety net but do not ensure financial
    security). Workers compensation benefits cover only disabilities
    caused by injury or illness arising on the job---only an estimated 4
    percent of long-term disabilities. The SSDI definition for
    disability excludes many workers who qualify for private disability
    benefits (p. 29).[^548]

### Supply and Demand Puzzle

The issues of identification of current and projected future costs of an
LTSS system are further complicated by the role of informal caregiving.
There are no agreed-upon definitions for caregivers for the elderly and
people with disabilities, especially when they are family and friends.
Little consensus exists among the states about the recognition of
families as a central component of the LTC system, such as in state
statutes, in other state policies, or in the provision of other home-
and community-based care programs and services. Providing explicit
support to family and friends of frail elders represents a paradigm
shift. Viewing the family caregiver as a "consumer" or "client" is a
relatively new concept for many state agencies.[^549]

Many policymakers and states disagree about whether family and informal
caregivers should be considered clients or consumers in the LTC system
and whether they should have access to their own support services.[^550]
Yet, according to the Kaiser Family Foundation Survey, only 8 percent of
people with disabilities turn to professional sources for assistance,
such as home health aides and personal assistants. Two-thirds rely on
family members and friends as an important source of support.[^551]

According the National Alliance for Caregiving and AARP, 44.4 million
American caregivers age 18 and older provide unpaid care to an adult age
18 or older. Six out of 10 of those caregivers either work or have
worked while providing care. Eighty-three percent are caring for a
relative. Most of the caregivers (69%) are women. Most of the people
receiving caregiving are women (65%) who are widowed (42%). Most care
recipients are 50 years old or older (80%) and live in their own home.
The typical caregiver is a 46-year-old woman who has at least some
college experience and provides unpaid care to a widowed woman age 50 or
older.[^552]

The middle-aged women who currently provide much of the care, both
formally and informally, will decrease in relative number, creating a
situation in which the demand for LTC workers could substantially
outstrip the supply.[^553]

The most frequently reported unmet needs for caregivers are finding time
for themselves (35%), managing emotional and physical stress (29%), and
balancing work and family responsibilities (29%). To cope, 73 percent of
caregivers say praying helps them with the caregiving stress, 61 percent
talk with or seek advice from friends and relatives, and 44 percent say
they read about caregiving in books.[^554]

Family members and other informal caregivers, such as friends and
neighbors, are the backbone of the LTC system, providing largely unpaid
assistance to loved ones with chronic illnesses and disabilities.
Without question, the economic value of family care is staggering. In
1998, HHS estimated that replacing donated LTC services for seniors with
professional care would cost between \$50 billion and \$103 billion.
Another recent analysis estimated the value of informal care of impaired
people of all ages in 1997---measuring it as forgone wages of the
caregiver---at \$196 billion.[^555] At an estimated value of \$257
billion nationally (in 2000 dollars), informal caregiving greatly
surpasses the costs associated with home health care (\$32 billion) and
nursing home care (\$92 billion).[^556]

The Older Americans Act of 2000 authorized NFCSP as a national program
with the following support to caregivers:

-   information to caregivers about available services;

-   assistance to caregivers in gaining access to supportive services;

-   individual counseling, support groups, and caregiving training to
    assist caregivers in making decisions and solving problems related
    to their role;

-   respite care to temporarily relieve caregivers from their
    responsibilities; and

-   supplemental services, on a limited basis, to complement care
    provided by caregivers.[^557]

While this legislation offers new resources for caregivers, more
research is needed to learn more about the programs that some states
have designed and their impact and cost savings.

While caregiving by family and friends is ancient, it is not fully
understood. The term "caregiver" needs to be defined. Caregiver
prevalence studies should use the same definitions and parameters to
gather better information. Issues such as caregiver training, caregiver
burden and stress, negative impact on the physical health of caregivers,
services they provide, and the economic impact of caregiving, especially
the impact on work, need to be understood.[^558] Outcomes and costs for
caregiving and quality measures for the safety and health of the care
recipient would address the value and gaps in caregiving.

#### Workforce Shortage and Recruitment and Retention Challenges

The demand for LTSS is growing. The cost is growing. The supply of paid
workers, skilled and unskilled, to respond to the market demand is
declining. The challenge for policymakers is not only to focus on
workforce shortages and related costs of education, training, wages, and
benefits but also to solve the puzzle of the role and relationship of
informal caregiving to paid providers. Who is going to meet the growing
demand for providing services and supports as informal caregiving
decreases?

The workforce shortage is both a supply and demand problem. As the aging
of the baby boom generation increases seniors' share of the population
from 12.6 percent in 2000 to 20.5 percent in 2040, the demand for LTC
services is virtually certain to increase. The population's aging will
also cause a decline in the share of the population that is of a working
age. In 2000, the ratio of people of working age to people of retirement
age was 4.7. In 2040, the ratio is forecast to fall to 2.6.[^559] There
will be a shortage of workers and taxpayers, along with an increasing
demand for health care services. It is not simply a supply-and-demand
issue. Other issues affect the shortage, such as wages and the job
itself.

As with most health care professions, there is a shortage of nurses and
home care workers for LTC. As of 2002, the health care workforce
included nearly 2.2 million registered nurses (RNs), about 700,000
licensed practical nurses (LPNs), and about 3.1 million paraprofessional
workers, including nurse home health, personal care aides, and home care
aides. The Health Resources and Services Administration forecast
projects that the demand for RNs and LPNs in nursing homes will increase
by 44.2 percent and 47.9 percent, respectively, between 2000 and 2020.
The demand for RNs and LPNs in home health agencies is expected to
increase by 43.8 percent and 53.8 percent, respectively, during the same
period. According to the Bureau of Labor Statistics (BLS), jobs for
nurses aides are also expected to grow by 23.8 percent, while the
employment of personal care and home health aides could grow at a much
more rapid rate of 58.1 percent between 1998 and 2008.[^560] These
statistics do not count the "gray market"---workers hired and supervised
by consumers who pay for their own care, whose numbers are thought to be
substantial.[^561] This sector of paraprofessionals in the home---the
home care worker---is consistently in BLS estimates of the top 20
fastest and largest job growth occupations. Over a half million new home
care jobs will be created by 2012.[^562]

This shortage in workers is occurring as the baby boomers age and the
incidence of chronic disease is on the rise. The basic argument is that
the aging of the baby boomers over the next few decades, along with
improvements in longevity generated by medical advances, will cause a
dramatic increase in the elderly population requiring LTC.[^563]
Government estimates suggest that the number of people using paid LTC
services---in a nursing facility, alternative residential care facility
such as assisted living, or at home---could nearly double, increasing
from 15 million in 2000 to 27 million in 2050.[^564] In the future, the
labor force, on the whole, will not be growing as fast as either the LTC
population or the population at greatest risk of needing LTC (i.e.,
people age 85 or older).[^565]

Economists generally believe that market forces tend to eliminate
shortages in the labor market (or elsewhere), especially with the
passage of time. If wages and benefits are free to adjust, worker
shortages in the short term should lead to higher compensation levels in
a given market, which then should attract workers to that field and
thereby ease the shortage. However, a number of factors might limit the
speed of any such adjustment.[^566] Factors may include competition for
these workers, content of the job, conditions of work, and the ability
to increase wages.

In particular, the shortage in direct care workers (paraprofessionals,
nursing assistants, personal and home care aides, and home health aides)
will have the greatest impact on community and home-based LTSS. The
profile of the direct care worker is a woman who is 37 to 41 years old.
Slightly over half of the direct care workers are white and
non-Hispanic. About one-third are African American and the rest are
Hispanic or other ethnicities. One-fourth of direct care workers are
unmarried and living with children, compared with 11 percent of the
total U.S. workforce. Two-fifths (41%) have completed their formal
education with a high school diploma or general education diploma (GED).
Another 38 percent have attended college.[^567]

There is a shortage of direct care workers. Direct care work is
unattractive in the LTC and health care sectors, and in the overall
workforce, for many reasons. The content of the job and conditions of
work may be one factor. In particular, care for the elderly may not be
considered appropriate or appealing work for other potential labor
pools, such as less-skilled men, and stressful work conditions might
limit other potential candidates as well.[^568] Another indicator is the
high staff turnover in the LTC sector. Studies have found that the
turnover rate in nursing facilities is nearly 100 percent for nursing
aides. Home care agencies have annual turnover rates between 40 percent
and 60 percent.[^569] Possible explanations for the high turnover rates
among nursing personnel in the LTC sector include relatively low wages,
limited or no benefits, and greater physical and emotional exertion than
is required in many other jobs in the health care sector.[^570]

The wages are low. In 2003, the median hourly wage for all direct care
workers was \$9.20, significantly less than the median wage of \$13.53
for all U.S. workers. Almost a fifth of direct care workers---far more
than the national average of 12 percent to 13 percent---earn incomes
below the poverty level, and 30 to 35 percent of all nursing home and
home health aides who are single parents receive food stamps.[^571] The
financial ability for this sector to generate higher wages and benefits
will be limited by the constraints on third-party payers, such as
Medicaid and Medicare, which are and will continue to be pressured to
reduce costs under the weight of a growing retirement population.[^572]

There is little access to health benefits for the direct care worker,
because the work is part time or the worker is self-employed. Home
health aides average 29.2 hours per week, and nursing aides, orderlies,
and attendants average 32 hours.[^573] Because the work is part time,
the worker often has to patch together a few jobs to make ends meet. In
1999, one-third (32.1%) of home care aides and one-fourth (25.2%) of
certified nursing assistants in nursing homes had no health insurance,
compared with one-sixth (16%) of all U.S. workers.[^574]

The elasticity of the labor supply reflects the responsiveness of
workers in any sector to the wages offered in that sector. A fairly
elastic labor supply indicates that workers will respond in large
numbers to higher wages.[^575] Again, wages will not be the only factor
that affects the transition of workers to LTC. If the willingness of
people to work in LTSS depends heavily on the extent to which they enjoy
providing care to the elderly; or if less-skilled men and other
demographic groups (such as youth or the near-elderly) are not amenable
to providing such work or view it as less prestigious or as a low-status
occupation, the elasticity of the labor market for this sector will be
relatively low.[^576]

The following are other variables that shift the labor supply and that
vary from state to state:

-   Labor market demographics: This includes the population from which
    the LTC workers is typically drawn. The share of the population
    composed of less-educated (with a high school diploma or less)
    middle-aged women and/or immigrants.

-   Unemployment rate: The local unemployment rate should also affect
    the relative supply to the LTC industry, as it reflects the amount
    of competition available from other low-wage occupations.

-   Low-wage worker policies: Polices to improve the wages and benefits
    of low-wage workers overall should have some positive effects on the
    labor supply to the LTC sector. These policies might include state
    minimum wages above the national level, federal and state-earned
    income tax credits, or a generous SCHIP.

-   Long-term support worker policies: Regulations might limit the
    supply of workers by imposing training or other requirements that
    make it harder to generate LTC workers. On the other hand,
    innovative recruitment or training programs could have more positive
    effects.

-   Wages and employment in competing occupations/industries: Wages in
    competing sectors, such as hospitality and child care, are important
    for determining the potential willingness of workers to enter the
    long-term services sector from these other sectors.[^577]

The issues for direct care workers and the labor supply must be
understood on the national, state, and local levels. Among the top
issues to be addressed are salary, full-time work, and benefits,
balanced with long-term service funding for Medicare and Medicaid. For
the success of consumer-directed programs and other Medicaid waiver
programs, the workforce issues and shortages need to be resolved.

### Summary

The documented growing demand for LTSS in the home and community raise
new questions for researchers and policymakers about current costs and
projected future costs for the under- and over-65 populations with
disabilities. The cost conundrum is further exacerbated by four
important factors.

First, insufficient data is available on LTSS costs for individuals
across the spectrum of disabilities under age 65. Second, there is
insufficient data on the costs of responding to a decreasing population
of informal caregivers and the development of an appropriately trained
and paid workforce. Third, there is a lack of agreement on the role and
responsibility of the government versus individuals and families to
cover the costs of current and future LTSS needs. Without research to
explore different public and private cost-sharing scenarios,
particularly for the under-65 population with disabilities, it would be
difficult to explore the relationship of public financing and private
insurance.

The fourth and final factor transcends the specific challenges of
development of a responsive LTSS system for the targeted population. The
global economic picture and changing demographics, in addition to the
current federal budget deficit, raise questions about the political will
to maintain current entitlements, let alone craft a new system.

## Part VI Reviewing the Passenger Manifest

*Case studies of the costs and services and supports for six individuals
with disabilities: 2005--2030.*

There is no better way to identify the reality of the environment we are
attempting to research than by referring to the human element. The
following case studies present information about the lives of six
individuals with disabilities, with information on services accessed and
costs (when available) associated with their needs on an annual basis
and projected 25 years out. Four of the cases present information on
physical and cognitive disabilities. Given the predictions regarding an
aging population, one case is based on a chronic medical condition
(diabetes) and another on Alzheimer's. No two case studies were
completed in the same state.

### Crystal's Story

#### General Description

Crystal is a one-year-old girl living with her single, 20-year-old
mother, Ruth, in Vermont. Crystal was born prematurely at 27 weeks.
Crystal and her mother had home health nurse visits because she was at
high risk due to prematurity. Crystal's mother and nurse had noticed
that Crystal was not developing motor skills normally and had a
preference for one side. She was diagnosed with cerebral palsy (CP) at
six months. She is now being evaluated for seizures because she has
periods of staring.

Crystal is tiny and below normal for weight and height. She is withdrawn
and quiet most of the time, although she smiles at Ruth. Crystal's left
arm muscles are stiff (spastic) and she does not sit up on her own. She
tries to roll over in one direction, although she does not crawl.
Crystal coos and makes noises, is bottle-fed, and does well with pureed
baby food. She is gaining weight and, like all babies, likes being in
her carriage and going for rides.

Crystal and Ruth live in a rented mobile home in rural southern Vermont.
The town they live in is 40 minutes from the nearest hospital or city.
Ruth worked as a waitress during her pregnancy. She has not returned to
work since Crystal was born because of Crystal's medical problems and
not having adequate day care. Ruth and Crystal are now on public
assistance. Ruth's mother, Jean, lives in the same area and works full
time as a secretary for a cement company. She visits Ruth frequently.
Crystal's father is not involved with the family.

#### Diagnosis and Level of Functioning

CP is a developmental disability that appears early in life, manifested
by difficult control of movement and posture. With a relationship to the
central nervous system and damage to parts of the brain, it may occur
before, during, or after delivery.[^578] There are four types of CP.
Spastic CP, in which the muscles are stiff and permanently contracted,
affects 70--80 percent of individuals with CP. Doctors often describe
the type of spastic CP an individual has based on which limbs are
affected (e.g., both legs, one side, or all four limbs).[^579]

It is a challenge to assess Crystal's level of growth and development
because of her prematurity, although her type of CP seems to be located
on the left side of her body. She can grasp and reach with her right
hand and is being evaluated for seizures and mental retardation. About
45 percent of children with CP have epilepsy. Seventy percent of people
with CP have other disabilities, including mental retardation.[^580]
Crystal is too young to be evaluated for ADLs or IADLs.

#### Present Services and Costs

The home health nurse referred Ruth and Crystal to FIT, the Family,
Infant and Toddler Program. FIT is Vermont's response to the Individuals
with Disability Education Act (IDEA), which requires states to have a
program or services to assess and support children with special health
needs and delays in development to reach their full potential. FIT is a
family-centered system of early intervention for children from birth to
three years who have or may have special health needs and/or delays in
development. After age three, the local school system is responsible for
the coordination and delivery of supportive and educational services
through an Individual Education Plan (IEP).

FIT did the original assessment and referrals for Crystal. Because Ruth
has no private insurance, all the costs are assumed by the state of
Vermont. If Crystal were eligible for SSI and received Medicaid, some of
the cost would be incurred by the Medicaid connection to SSI, which is
both federal and state funded. They arranged for Crystal to be seen and
followed by a developmental pediatrician who has a monthly Vermont
Children with Special Needs clinic in the nearby city. Through FIT, the
early childhood educator has developed with Ruth, Jean, and other
professionals an IEP for Crystal. Crystal has been assigned a case
manager through FIT to help Ruth with access and coordination of
services. Crystal has physical therapy twice a week for muscle and joint
flexibility and development. She has an occupational therapist who does
play therapy and fine motor coordination with Crystal. A dietitian
visits with Ruth to talk about nutrition and food planning, because
children with CP burn more calories. An early education and parenting
specialist works with Ruth, Jean, and Crystal on parenting and bonding
with a child with special needs.

A social worker is working with Ruth on her financial and housing
situation. The mobile home is not handicap-accessible and the town she
lives in does not have a special education department in its school
system. They are discussing moving into a more accessible home and
considering moving to the city, where more services are available and
there is a school with a special education department. If Ruth does not
move to the city, Crystal will be transported daily to the city school,
which is 40 minutes each way.

The social worker and parenting specialist are concerned about Ruth. She
is often overwhelmed with the care of Crystal and her own lack of social
contacts. Her friends do not visit her anymore, and she can only go out
when Jean can come over and babysit.

Transportation is becoming an issue because Ruth's car is old and she
does not have the money to buy a new one. She uses the Red Cross for
transportation for medical visits for Crystal. This is a service the Red
Cross provides for rural families in southern Vermont.

Ruth is now on public assistance for income through the Office of
Economic Services and Vermont Health Access Program (VHAP) for health
coverage (Medicaid). She receives a supplemental payment from the state
and food stamps. With the help of the social worker, she is looking for
funding for a special stroller and chair for Crystal. She may have
access to a Payer of Last Resort Pool, which is available through FIT.
The state of Vermont has reorganized its agencies for people with
disabilities into one department, the Department of Aging and
Independent Living, to better coordinate and administer services to the
elderly and individuals with disabilities. (Crystal would be eligible
also for an SSI payment and Medicaid through that eligibility, and Ruth
would continue to be covered under the public assistance program.)

+----------------------------------------+-----------------------------+
| Annual Costs                           |                             |
+----------------------------------------+-----------------------------+
| **Public Assistance:**                 |                             |
+----------------------------------------+-----------------------------+
| > **Temporary Assistance to Needy      | **\$ 6,420 (2004            |
| > Families**                           | dollars)**[^581]            |
+----------------------------------------+-----------------------------+
| > **State Subsidy Payment to Family**  | **\$ 2,802 (2002            |
|                                        | dollars)**[^582]            |
+----------------------------------------+-----------------------------+
| > **State Flexible Family Funding**    | **\$ 1,122 (2004            |
|                                        | dollars)**[^583]            |
+----------------------------------------+-----------------------------+
| > **Food Stamps**                      | **\$ 2,400 (2004            |
|                                        | dollars)**[^584]            |
+----------------------------------------+-----------------------------+
| > **Personal health care costs\        | **\$10,437 (1993            |
| > (average personal health costs)**    | dollars)**[^585]            |
+----------------------------------------+-----------------------------+
| > **Supplemental Security Income**     | **\$ 4,032 (estimated child |
|                                        | payment)**[^586]            |
+----------------------------------------+-----------------------------+

#### Future Services and Costs

In 2030, Crystal will be 27 years old. Crystal's history has been a
difficult one. Her mother, Ruth, left her at the age of six. Ruth said
she just couldn't take it anymore. They had never moved out of the
mobile home and Crystal had been traveling almost two hours back and
forth from a special education program in the city. She had no friends
locally and was very isolated, just like her mother, Ruth. Jean,
Crystal's grandmother, became the parent and guardian for Crystal. They
continued to live in rural Vermont and traveled to the school and other
services. Jean was better able to cope with Crystal's care, and they
developed a very loving relationship. Crystal graduated from high
school, but never found employment and had continued to live with her
now aging grandmother. They took care of each other. They had refused
any services for people with disabilities. They had had no contact with
the Department of Aging and Independent Living since Crystal finished
high school. When Crystal was 25, Jean could no longer care for herself
or Crystal. Jean contacted the Center for Independent Living for help.

Crystal has been assigned a case manager from the Department of Aging
and Independent Living. Because she can no longer live with her
grandmother, Crystal has agreed to go into a small group home in the
city to transition her to more independence and the possibility of
employment.

Crystal is able to do all of her ADLs in an adaptive environment. She
can walk with a leg brace and cane with some difficulty. She now has a
motorized wheelchair.[^587] She has the potential to assume her IADLs
with adequate training. When she lived with her grandmother, Jean
managed the money and shopping.

Crystal had a full evaluation by the Center for Independent Living. She
is receiving psychological counseling. Crystal is withdrawn, has low
self-esteem, and is moderately depressed. She was rejected by her
mother, had no friends due to her rural isolation, and misses her
grandmother. She had been evaluated for mental retardation as a child
and was found to have normal intelligence. She did finish high school
but did not receive any vocational training or further education.

Crystal's plan for independence is full employment, her own apartment,
and case management. Crystal agrees with the plan but is not sure she
can do it. Her present services through an HCBS waiver include
vocational training, psychological counseling, group living, socializing
activities at the Center for Independent Living, and IADL training. She
visits her grandmother every week. She receives SSI from SSA and medical
insurance through VHAP (Medicaid).

+---------------------------------------+------------------------------+
| **Annual Costs**                      |                              |
+---------------------------------------+------------------------------+
| > **Supplemental Security Income**    | **\$ 6,624 (2003             |
|                                       | dollars)**[^588]             |
+---------------------------------------+------------------------------+
| > **VHAP (Medicaid)\                  | **\$10,437 (1993             |
| > (average personal health costs)**   | dollars)**[^589]             |
+---------------------------------------+------------------------------+
| > **Group Housing**                   | **\$40,000 (2004             |
|                                       | dollars)**[^590]**\          |
|                                       | (estimated national          |
|                                       | average)**                   |
+---------------------------------------+------------------------------+
| > **HCBS Waiver**                     | **\$35,215 (2003             |
|                                       | dollars)**[^591]             |
+---------------------------------------+------------------------------+

#### Case Summary

Crystal's story represents a number of themes, including a child with
disabilities born in a rural setting, a family caregiver system, the
availability and fragmentation of state services, and consumer
direction. The rural setting led to financial difficulties and
isolation. While the FIT program did provide home visits, for the
majority of Crystal's life, the rural setting meant transportation
issues, employment issues for the mother, lack of availability of day
care and school services, and social isolation from schoolmates and
other social services. The state provided intense, family-oriented
services and support for the first three years of Crystal's life, but as
she grew older, Crystal fell between the cracks and received no services
for a period of time. However, at 27, she was able to reconnect to
support services provided by the state. The support of her family was
mixed. Her mother was overwhelmed and left, and a loving grandmother
assumed her care. However, her grandmother continued the social
isolation and, therefore, Crystal has been delayed reaching full
independence. The level of consumer direction is not clear. Did Crystal
prefer social isolation with her grandmother or did she not fully
understand her choices? The costs have clearly increased as Crystal has
moved from family care to more independent living.

### Robert's Story

#### General Description

A Wisconsin resident, Robert, is a 45-year-old man with schizophrenia
complicated by a developmental disability. The voices that he hears
constantly and responds to verbally are poorly controlled by medication.
He has an average IQ. He is overweight with poor posture, is not secure
on his feet, and has a history of numerous broken arms. Although he
often looks unkempt, his clothes are clean, his hygiene is good, and he
is nonviolent. Robert appears shy and withdrawn when he is fighting the
voices and has limited eye contact and slurred speech that he can
correct if he is asked to speak more clearly.

Robert was diagnosed with behavioral issues, developmental issues, and
emotional disturbance when he was in elementary school. He was placed in
a school for emotionally disturbed children, attended public high school
with the support of a special needs department, and had some vocational
training. When he was 23, he worked for one year in a supermarket but
fell and broke his arm. He refused to go back to work.

Robert lives with his elderly, retired parents and goes to day
habilitation (sheltered workshop). He had lived in a group home in the
past, but he did not want to stay in that setting because he did not
like his roommates. For the majority of his life, he has lived with his
parents. He is the second oldest of five siblings. Two of his brothers
and one sister live nearby in Wisconsin. One sister lives in New Jersey.
Robert is very involved with his family and visits his sister in New
Jersey every year with his parents. Robert is friendly with some of the
participants in his day program. Robert has a network of past teachers
and counselors that he calls on the telephone every week. Some of these
relationships have existed for more than 30 years. He enjoys music,
football, and vacations with his family. He is able to take public
transportation and go shopping at the mall by himself.

#### Diagnosis and Level of Functioning

According to the National Institutes of Health, schizophrenia is a
chronic, severe, and disabling condition. People with schizophrenia
often suffer terrifying symptoms, such as hearing internal voices not
heard by others (hallucinations) or believing that other people are
reading their minds, controlling their thoughts, or plotting to harm
them. Approximately 1 percent of the population develops
schizophrenia---more than 2 million Americans suffer from the illness in
a given year. Children over the age of five can develop schizophrenia,
but it is very rare before adolescence. Antipsychotic drugs are the best
treatment now available, but they do not cure schizophrenia or ensure
that there will not be further psychotic episodes.[^592]

Robert takes antipsychotic drugs and regularly sees a psychiatrist for
medication management. The antipsychotic drugs do not fully control his
hallucinations. Over the years, he has been admitted for acute
psychiatric hospital care when he is nonfunctioning because of the
hallucinations. In a recent hospital admission, he was found to have
high cholesterol, for which he now takes medication regularly. After
that admission, he was referred to an internal medicine physician for
medical care. It is not unusual for people with disabilities to have
their medical care focused on their disabilities and not to have
recommended preventive examinations and routine screenings.

Robert is able to do his ADLs with oversight from his parents. Robert
manages his weekly allowance and is able to go shopping and take the
bus. In the past, he has flown alone to visit his sister with his
parents getting him on the plane and his sister being there when he
arrives. He has not been able to live independently, cook his own meals,
or manage a household. Robert participates in decisions about his life
and trusts his parents and family.

#### Present Services and Costs

Robert meets the Wisconsin definition for adults with serious mental
illness and, because of his balance and speech difficulties, meets the
developmental disabilities definition. Chronic mental illness means a
mental illness that is severe in degree and persistent in duration,
which causes a substantially diminished level of functioning in the
primary aspects of daily living and an inability to cope with the
ordinary demands of life, which leads to an inability to maintain a
stable adjustment and independent functioning without long-term
treatment and support and which may be of lifelong duration. Chronic
mental illness includes schizophrenia, as well as a wide spectrum of
other severely disabling psychiatric conditions, but it does not include
organic mental disorders or a primary diagnosis of mental retardation or
of alcohol or drug dependence.[^593] An individual who also has been
diagnosed with developmental disabilities has more difficulty with daily
living skills and often lacks the ability to live without some amount of
daily support.

Wisconsin has been a national leader and an incubator in the area of
services for the treatment of people with mental illness.[^594] The
Wisconsin Administrative Code, Chapter HFS 63, mandates each county to
have a Community Support Program (CSP).

A CSP is a coordinated care and treatment program providing a range of
treatment, rehabilitation, and support services in the community through
an identified treatment program and staff, ensuring ongoing therapeutic
involvement and individualized treatment for people with severe and
persistent mental illness. The array of required treatment services
available to CSP consumers includes crisis intervention; symptom
assessment, management, and education; medication prescription and
monitoring; psychiatric evaluation and treatment; and family,
individual, or group psychotherapy. The required array of rehabilitation
services available to CSP consumers includes vocational assessment, job
development, and vocational supportive counseling; social and
recreational skill training; and individualized support, training, and
assistance in ADLs. The required array of support services available to
the CSP consumers includes assistance in obtaining needed physical and
dental care, legal services, transportation services, acquisition of
financial support and benefits, and housing supports. Case management is
an integral part of CSP services. CSP case management includes
coordination of assessment and treatments, coordination of referrals,
assessment and monitoring of symptoms, providing supportive therapy, and
symptom education. Case management also includes advocacy on behalf of
consumers; education, support, and consultation with consumers, parents,
families; and other supports.[^595] CSP is an HCBS waiver program for
Medicaid, and the county in which the program resides pays the state
portion. Because the counties are required to know what their
constituents want and need, the programs vary by county. There is also a
statewide quality assurance program for mental health services to
collect client-specific data and measure consumer-oriented quality.

Robert lives at home and attends a day habilitation program that is part
of the CSP in the county. Day habilitation provides him with education,
supportive therapy, socialization, and other activities. His case
manager sees him at least once a month there. He is able take public
transportation to and from the program. The CSP also covers his visits
with the psychiatrist and medication management.

Robert receives SSI and has Medicaid for health coverage. Robert also
receives SSDI and Medicare from his retired parental work record,
because he was disabled before he was 22 years of age, was never
married, and does not have a sufficient work record of his own.

Robert's parents are both retired and middle class. They are his
guardians and have power of attorney. They meet with the case manager
once a year and as needed. When they are on vacation and Robert does not
go with them, Robert stays with one of his brothers. His parents are
members of the National Alliance for the Mentally Ill of Wisconsin and
attend the local chapter meetings.

+-------------------------------------------+--------------------------+
| **Annual Costs**                          |                          |
+-------------------------------------------+--------------------------+
| > **Community Support Services**          | **\$ 6,030 (2001         |
|                                           | dollars)**[^596]         |
+-------------------------------------------+--------------------------+
| > **Community Treatment Services**        | **\$ 1,211 (2001         |
|                                           | dollars)**[^597]         |
+-------------------------------------------+--------------------------+
| > **HCBS Waiver**                         | **\$36,528 (2002         |
|                                           | dollars)**[^598]         |
+-------------------------------------------+--------------------------+
| > **Supplemental Security Income and**    | **\$ 7,104 (2003         |
|                                           | dollars)**[^599]         |
+-------------------------------------------+--------------------------+
| > **Social Security Disability            |                          |
| > Insurance**                             |                          |
+-------------------------------------------+--------------------------+
| > **Medicaid plus Medicare\               | **\$21,236 (2000         |
| > (average personal health costs)**       | dollars)**[^600]         |
+-------------------------------------------+--------------------------+

#### Future Services and Costs

In 2030, Robert will be 71 years old. As his parents aged, he agreed to
live in a community residential home. When his parents were alive, he
would come home for a weekend day and his parents would take him out one
evening during the week for dinner. After both of his parents died, his
siblings assumed the same schedule. He spends one weekend day with one
of his three siblings in the area and another sibling takes him out to
dinner once a week. His youngest brother is now his guardian and has
power of attorney.

Robert still has daily hallucinations. He is more unstable on his feet
and uses a walker. He has developed high blood pressure and adult onset
diabetes. He is more withdrawn and is often talking back to the voices.
He does not want to go to a day habilitation program anymore. He likes
to watch television, especially sports, and listen to music. He still
spends part of each day phoning friends, siblings, and teachers from his
past. He will walk around the yard or sit on the porch. He no longer
wants to go on the bus by himself. He can still do his ADLs with
reminders from the residential staff; the staff also help him with money
management. The CSP provides him with medical care, dental care,
psychiatric care, medication management care, and case management.

+------------------------------------------+---------------------------+
| **Annual Costs**                         |                           |
+------------------------------------------+---------------------------+
| > **Community Residential Services**     | **\$10,159 (2001          |
|                                          | dollars)**[^601]          |
+------------------------------------------+---------------------------+
| > **Community Treatment Services**       | **\$ 1,211 (2001          |
|                                          | dollars)**[^602]          |
+------------------------------------------+---------------------------+
| > **HCBS Waiver**                        | **\$36,528 (2002          |
|                                          | dollars)**[^603]          |
+------------------------------------------+---------------------------+
| > **Supplemental Security Income and**   |                           |
+------------------------------------------+---------------------------+
| > **Social Security Disability           | **\$ 7,104 (2003          |
| > Insurance**                            | dollars)**[^604]          |
+------------------------------------------+---------------------------+
| > **Medicaid/Medicare\                   | **\$21,236 (2004          |
| > (estimated average personal health     | dollars)**[^605]          |
| > costs)**                               |                           |
+------------------------------------------+---------------------------+

#### Case Summary

Robert's story represents a number of themes, including the family
caregiving system, a well-coordinated state system, and consumer
direction. Robert's family has a very strong sense of family
responsibility. His parents cared for Robert his whole life while
fostering independence and utilizing public and private support. The
siblings have continued the support of Robert, as he is an integral
member of his family. The state of Wisconsin has well-coordinated
services, including acute care and LTC. Robert has benefited from
coordinated services and case management. Robert has directed his life
with the support of his family. The cost of services has been
substantial, even with the family caregiving. The success of Robert's
story is consumer direction with active family support in a state with
well-coordinated services.

### Lucy's Story 

#### General Description

Lucy is an 18-year-old girl with mental retardation. She lives at home
in Massachusetts with her parents, who are a lawyer and a manager, and
her younger brother, who is four years younger. Their home is in a small
middle- to upper-class town northwest of Boston. Lucy attends a public
high school. According to Massachusetts Chapter 766 and the Federal
IDEA, the public school system must provide her with education and
appropriate services until she is 22 years old. Lucy has been attending
a full day of classes in the school's special education department. She
has had prevocational training to be able to clean trays and tables in
the school cafeteria. This year, she will be attending half-day
vocational training as a health care assistant and half-day classes in
the school's special education department.

Lucy's social activities are parent-directed. She has attended dance
classes and theater classes. She is involved and has competed in the
Special Olympics for swimming and downhill skiing. She has four
girlfriends. Three are from her special education class and the fourth
is a girl she has known since elementary school. She usually talks with
them on the telephone and attends school activities and dances with
them. Lucy has a friend she calls her "boyfriend" whom she met through
Special Olympics. She talks with him on the phone, but they do not see
each other outside of the Special Olympics. Lucy lives at home with her
parents, who have power of attorney for her.

#### Diagnosis and Level of Functioning

The definition of mental retardation, according to the American
Association on Mental Retardation, is as follows:

Mental retardation is a disability characterized by significant
limitations both in intellectual functioning and in adaptive behavior as
expressed in conceptual, social and practical adaptive skills. This
disability originates before age 18. The five assumptions to the
application of the definition are (1) Limitations in present functioning
must be considered within the context of community environments typical
of the individual's age peers and culture; (2) Valid assessments
consider cultural and linguistic diversity as well as differences in
communication, sensory, motor and behavioral factors; (3) Within an
individual, limitations coexist with strengths; (4) An important purpose
of describing limitation is to develop a profile of needed supports; and
(5) With appropriate personalized supports over a sustained period, the
life function of the person with mental retardation generally will
improve.[^606]

Lucy has cognitive development delay. Her IQ is 64. Her speech is slow.
Her reading, writing, and math skills are at a first-grade level. While
she is shy at times, she can be friendly with people she knows, and she
communicates back and forth with peers and adults in a limited but
effective way. She has no physical limitations or chronic illnesses. She
can perform ADLs, such as bathing, dressing, and eating, with reminders
from her parents. She would have difficulty with IADLs, such as money
management, some shopping, and traveling.

#### Present Services and Costs

The local education system is responsible for much of Lucy's past
training and costs. According to Massachusetts' Chapter 766, the school
system must provide education, training, and counseling up to the age of
22. The school has provided a special need education, vocational
training, and speech and language therapy to work on her vocabulary,
word retrieval, and language processing for appropriate responses. She
has had ongoing counseling with the school social worker about
adaptation and appropriate social behaviors.

Because Lucy is 18, she is starting to transition to the adult support
system through the Massachusetts Department of Mental Retardation. She
is presently being reevaluated by the Regional Eligibility Team. The
Regional Eligibility Team will do an Individual Support Plan (ISP) to
determine the adequate, most appropriate, and least restrictive supports
she will need. The ISP will include Lucy and her parents. The local
provider for the Massachusetts Department of Mental Retardation, through
an approved ISP, will continue her vocational training, provide her with
activities for continued socialization, and assign her a service
coordinator. The service coordinator is a case manager who will do
ongoing assessments and provide information, crisis intervention, and
advocacy.

Lucy will continue to live at home while she is in vocational training.
She is also staying involved with the Special Olympics. Lucy will no
longer be covered by her parents' private health insurance. She will go
on MassHealth, which is Massachusetts' Medicaid. She will also be
eligible for SSI through the Social Security Administration.

Her family will also be able to access support services. Family support
services consist of any community-based service administered or financed
by the state MR/DD agency providing vouchers, direct cash payments to
families, reimbursement, or direct payments to service providers, which
the state agency identified as family support. Examples of family
support include cash subsidy payments, respite care, family counseling,
architectural adaptation of the home, in-home training, sibling support,
education and behavior management services, and the purchase of
specialized equipment.[^607] While Lucy's family is upper middle class,
they take advantage of family counseling and in-home training through
the local Department of Mental Retardation provider.

+---------------------------------------------+------------------------+
| **Annual Costs**                            |                        |
+---------------------------------------------+------------------------+
| > **Average Cost per Special Education      | **\$13,542 (2003       |
| > Student**                                 | dollars)**[^608]       |
+---------------------------------------------+------------------------+
| > **Supplemental Security Income**          | **\$ 6,624 (2003       |
|                                             | dollars)**[^609]       |
+---------------------------------------------+------------------------+
| > **HCBS Waiver**                           | **\$42,536 (2002       |
|                                             | dollars)**[^610]       |
+---------------------------------------------+------------------------+
| > **Average MassHealth Cost\                | **\$21,820 (2000       |
| > (estimated average MA personal\           | dollars)**[^611]       |
| > health care cost, per capita)**           |                        |
+---------------------------------------------+------------------------+
| > **Family Support**                        | **\$ 2,653 (2002       |
|                                             | dollars)**[^612]       |
+---------------------------------------------+------------------------+

#### Future Services and Costs

In 2030, Lucy will be 44 years old. It is expected that at that time she
will be working as a health care assistant in an assisted living
facility under a supported employment program of the local Department of
Mental Health provider and an HCBS waiver. Supported employment consists
of MR/DD state agency--financed programs for long-term employment
support, with the goal of developing independent work skills leading to
competitive wages for individuals with mental retardation.[^613] She
will be earning minimum wage or above and have her health benefits
through her employer.

Lucy will live in a supported living apartment through an HCBS waiver.
Supported living includes housing in which individuals choose where and
with whom they live, in which ownership is by someone other than the
support provider, and in which the individual has a personalized support
plan that changes as his or her needs and abilities change.[^614] Lucy's
housing is provided by the local Department of Mental Retardation. She
takes the bus to her job and to go shopping.

Her parents still live nearby and have power of attorney. Lucy, her
parents, and the service coordinator are discussing a long-term plan for
Lucy as her parents' age. They are discussing whether her brother, who
lives out of state, should have power of attorney or whether they should
appoint a guardian.

Lucy is still very involved with her parents. Lucy goes to church with
her family, goes on vacation with them, and spends holidays with them.
She also has social activities through the local Department of Mental
Retardation provider. Lucy has a boyfriend whom she sees regularly. Lucy
remains healthy, although she is now overweight.

+---------------------------------------------+------------------------+
| **Annual Costs**                            |                        |
+---------------------------------------------+------------------------+
| > **Housing Support**                       | **\$23,752 (2002       |
|                                             | dollars)**[^615]       |
+---------------------------------------------+------------------------+
| > **Employment Support**                    | **\$12,377 (2002       |
|                                             | dollars)**[^616]       |
+---------------------------------------------+------------------------+
| > **HCBS Waiver**                           | **\$42,536 (2002       |
|                                             | dollars)**[^617]       |
+---------------------------------------------+------------------------+
| > **Estimated Supplemental Security Income\ | **\$ 6,624 (2003       |
| > (earned wages would determine exact       | dollars)**[^618]       |
| > amount)**                                 |                        |
+---------------------------------------------+------------------------+
| > **Medicaid**                              | **\$21,820 (2000       |
|                                             | dollars)**[^619]       |
+---------------------------------------------+------------------------+
|                                             |                        |
+---------------------------------------------+------------------------+

#### Case Summary

Lucy's story represents a number of themes, including the family
caregiving system, a well- coordinated service system at the local
level, and consumer direction. The success of Lucy's family caregiving
is that the family has resources. They are well educated and have a
middle- to upper-class income. They know how to advocate for Lucy and
foster her independence and socialization. The services available to
Lucy are at the local level, including the town school system. The
school system coordinates the transition to the local provider for the
Department of Mental Retardation. Lucy has the advantage of a local
agency that will support and coordinate care and independence. Because
her parents have fostered her independence, Lucy can direct her life
within the context of her abilities. Many of the earlier costs were
assumed by the local school system and her parents. The costs increased
as she assumed a more independent but supported life, although she earns
an income and has medical coverage through her employer.

### Miguel's Story 

#### General Description

Miguel is 27 years old and a resident of Colorado. He sustained a spinal
cord injury at the level of T-4 (fourth thoracic vertebrae) in a car
accident one year ago. He is wheelchair bound and is in his first year
of rehabilitation.

Miguel came to the United States from Central America when he was 12
years old and lived with his parents and two sisters in Arizona. Miguel
speaks English and graduated from high school but has poor reading and
math skills. Since high school, he has worked in the food industry as a
dishwasher and short-order cook. He moved to Colorado three years ago
with two friends to work at a ski resort in the kitchen as a cook. The
pay was better and the resort offered low-rent housing to the staff. One
night, after work, he was in a single-car accident. He hit a patch of
ice and went off the road and hit a number of trees. He was thrown from
the car and broke his back.

Miguel has had two surgeries on his back. The first was to stabilize the
dislocation of his spine with a spinal fusion. Six months later, he had
a rod placement to further stabilize his back. He was in rehabilitation
after the first surgery. Since the second surgery, he has received his
rehabilitation in a nursing home, where he receives both physical
therapy and occupational therapy. He is hoping to be discharged to an
apartment that is handicap-accessible with the support of a personal
assistant.

His parents and sisters from Arizona have visited him three times since
his accident and would like Miguel to move back home so they can be more
involved in his life. His friends from work visited him at first, but
now, a year later, they rarely come by.

#### Diagnosis and Level of Functioning

Spinal cord injury (SCI) occurs when a traumatic event results in damage
to cells within the cord or severs the nerve tracts that relay signals
up and down the spinal cord. The most common types of SCI include
contusion (bruising of the spinal cord) and compression (pressure on the
spinal cord). Severe SCI often causes loss of control over voluntary
movement and muscles of the body and loss of sensation and function
below the point of injury, including loss of bowel and bladder control
and sexual dysfunction.[^620]

There are 11,000 new cases of SCI each year, and 247,000 Americans are
living with SCI. The most common cause is motor vehicle accidents and
the second most common cause is violence, such as a gunshot wound. Most
SCIs occur in men between the ages of 16 and 30. Thirty-four percent of
SCIs result in incomplete or quadriplegia (paralysis of all four limbs)
and 25.1 percent result in complete paraplegia (lower limb
paralysis).[^621]

Miguel has a spinal cord injury at the T-4 level. He has paraplegia
(loss of muscle control and sensation in his legs). He also has some
paralysis of his trunk, which means he has difficulty sitting. His
injury did not affect his diaphragm and he has no breathing problems.

For his ADLs, Miguel has full use of his arms and hands. He can feed
himself and participate in his hygiene and dressing. With rehabilitation
and appropriate aids, he will be able to swing his lower trunk and
transfer into a wheelchair. With rehabilitation, his ability to balance
while sitting and leaning forward, backwards, and sideways is improving.
Miguel needs significant assistance in the beginning of the day with
hygiene, dressing, and getting in the wheelchair and again with settling
for night.

For IADLs, Miguel still needs assistance. The language barrier,
especially the written word, is difficult. He does not always understand
medical language, consent forms, and instructions. Transportation
resources are limited, so his ability to go out of the nursing home is
limited. He is able to manage his money.

Miguel is very angry. He is angry about the accident and his injury and
has not accepted his disability. His isolation and language issues
frustrate him and he feels useless. His psychological state is impeding
his rehabilitation and he is receiving counseling from a social worker.

#### Present Services and Costs

Miguel is presently living in a nursing home that provides
rehabilitation, including physical therapy, occupational therapy, and
social work. The social worker has helped him get SSI through the Social
Security Administration and Medicaid, through the State of Colorado.
Miguel now has an income and medical coverage. In the nursing home,
Medicaid pays all medical expenses and the SSI is paying for housing and
food.

Miguel will have access to services for adults with disabilities through
Colorado's Office of Adult, Disability and Rehabilitation Services
(ADRS). ADRS's mission is to ensure the safety of Colorado's adults and
individuals with disabilities, and their rehabilitation needs. This
office promotes personal choice, independence, and improved quality of
life. The program goals of this office are to help clients develop and
exercise their individual competencies and talents, and to achieve the
highest possible levels of rehabilitation, employment, community
participation, and independence.[^622]

Miguel would like to have his own apartment that is accessible. With a
personal assistant in the morning and evening, Miguel could probably
live independently. However, in Colorado, there is a waiting list for
housing. More than 1,200 families remain on the Supportive Housing and
Homeless Programs waiting list for rental assistance.[^623] Miguel is on
that waiting list.

There is also a shortage of direct care staff, nationally and in
Colorado. Miguel cannot go into an apartment without a personal
assistant for ADLs. High turnover and low wages have resulted in
personal care boarding homes, assisted living, and nursing homes
reaching a crisis state for the industry.[^624]

The nursing home social worker has also referred Miguel to the
vocational rehabilitation program in Colorado, The Division on
Vocational Rehabilitation provides job coaching, adjustment training,
and on-the-job training to offer one of the best opportunities for
individuals with the most significant disabilities to secure and
maintain gainful employment in integrated work settings in the
community.[^625] Eligibility determination is usually completed within
49 days.

Colorado is experiencing the largest shortfall in revenue in over 60
years. Colorado suffered an \$869 million dollar shortfall in State FY
2002--03. A \$900 million dollar shortfall is anticipated for state FY
2003--04. This will result in deeper and more significant program
reductions at the state level. Little assistance from the Federal
Government can be expected because recent federal funding is flat.[^626]
The recovery from Colorado's last major recession, over two decades ago,
took 42 months. The recovery from the current recession is projected to
be slower and more uncertain.[^627] This current fiscal situation in
Colorado will result in increasing waiting lists for services and delays
in new services, such as expansion of the Independent Living Centers.

+---------------------------------------------+------------------------+
| **Annual Costs**                            |                        |
+---------------------------------------------+------------------------+
| > **Nursing Home**                          | **\$42,000 (1999       |
|                                             | dollars)**[^628]       |
+---------------------------------------------+------------------------+
| > **Health Care and Income**                | **\$25,394 (2004       |
|                                             | dollars)**[^629]       |
+---------------------------------------------+------------------------+
| > **Social Security Disability Insurance**  | **\$10,404 (2004       |
|                                             | dollars)**[^630]       |
+---------------------------------------------+------------------------+
| > **Estimated Annual Medicaid**             | **\$21,457 (2000       |
|                                             | dollars)**[^631]       |
+---------------------------------------------+------------------------+

It is noted that the first year of costs, including health care and
living expenses for a person with a spinal cord injury and paraplegia,
is \$249,549 in 2004 dollars.[^632]

#### Future Services and Costs

In 2030, Miguel is 53 years old and living in a board and care home.
Also called an adult care home or group home, this home offers housing
and personal care services to between 3 and 16 residents who are
assigned to a bed. Group home services such as meals, supervision, and
transportation are usually provided.[^633] Miguel has a personal
assistant for his ADLs when one is available. When one is not available,
he pays someone at the board and care home under the table for help.
Miguel is capable of assisting with his hygiene and toileting. He can
prepare meals, go shopping, and manage his own money. He can transfer
from bed to wheelchair and back to bed. He has a motorized wheelchair
paid for by Medicaid after he developed chronic shoulder problems from
his manual wheelchair. With the motorized wheelchair, he is able to
travel where he needs to go in his neighborhood.

Miguel did start vocational rehabilitation but was frustrated by the
language barrier and inadequate transportation services. His vocational
rehabilitation counselor was concerned about his mental health. They had
difficulty finding a Spanish-speaking counselor and Miguel was not open
to talking about his disability or his anger. He dropped out of the
program because he was frustrated. He has maintained an income through
SSDI and SSI and medical insurance through Medicare and Medicaid.

He remains very frustrated by his disability, social isolation, and
language barrier. He drinks alcohol daily and is at times belligerent.
He has been evicted from other housing situations in the past, and a
number of personal assistants refuse to care for him. None of his old
friends are in touch with him. His family still calls him and encourages
him to come to Arizona, but he is afraid of losing his benefits. His
social life is based on the people in his board and care home and the
local bars. He has no steady relationships. Because of his drinking, he
is on a waiting list for vocational rehabilitation and is not welcomed
in an independent living center. Miguel has no case manager or
coordination of care.

His health has been affected by his alcohol abuse, mental health issues,
chronic urinary tract infections, and pressure sores. The latter two
conditions are related to his paraplegia and place him at risk for
septicemia, which is an infection of the blood system and can be fatal.
He receives his care at an outpatient clinic and the local emergency
room. At times he is admitted to the hospital or has home care services
for his infections and falls. He does not have a regular doctor and his
care is based on each individual incident of infection or fall. He does
not have coordinated care, nor does he have any preventive care or
screenings. Most of the time, he either does not understand the
physician's instructions or he does not follow them. Medicaid covers his
occasional prescriptions. He is not receiving any treatment for his
alcohol abuse or his mental health issues.

+---------------------------------------------+------------------------+
| **Annual Costs**                            |                        |
+---------------------------------------------+------------------------+
| > **Social Security Disability Income**     | **\$10,404 (2004       |
|                                             | dollars)**[^634]       |
+---------------------------------------------+------------------------+
| > **Medicare and Medicaid**                 | **\$16,854 (1995       |
|                                             | dollars)**[^635]       |
+---------------------------------------------+------------------------+
| > **HCBS Waiver\                            | **\$29,120 (1997       |
| > (Board and Care Home)**                   | dollars)**[^636]       |
+---------------------------------------------+------------------------+
| > **Personal Assistance Services\           | **\$19,656 (2003       |
| > (3 hours per day)**                       | dollars)**[^637]       |
+---------------------------------------------+------------------------+

#### Case Summary

Miguel's story represents a number of themes, including a language
barrier, complications added by substance abuse, lack of a family
support system, lack of portability of services from one state to
another, and lack of state funding for services. A SCI is a sudden-onset
disability, and a negative, angry response is not unusual. An unhealthy
response to disability, such as substance abuse, is also not unusual.
The entire situation is compounded by the language barrier and social
isolation. Miguel is at high risk. Because of a recession and budgetary
restraints, state services are not coordinated or even available. There
are long waiting lists. His health care is not coordinated. Miguel has
and will continue to fall between the cracks. He will not reach his
potential for rehabilitation and independence. Without addressing his
anger, depression, and alcohol abuse, it is hard to say whether his
rehabilitation will ever be consumer directed.

### Howard's Story

#### General Description

Howard is a 72-year-old man living in Redondo Beach, a suburb of Los
Angeles, California. Howard lives with his wife, Sophie, who is 68 years
old. They have three children, ages 48, 45, and 39, and eight
grandchildren. Howard retired five years ago from a small aerospace firm
located in Los Angeles, where he worked as a design engineer technician.
Sophie also retired five years ago from where she worked part time in a
physician's office as a registered nurse. Howard and Sophie live
together in a two-bedroom modest condominium three blocks from the
Pacific shore. They like to walk every morning along the beach, and
twice a week they volunteer at the local high school for literacy
program.

Howard and Sophie drive one weekend a month to visit with each one of
their children and grandchildren, going to San Diego, Berkeley, and
Pasadena. They have a circle of friends their own age who visit together
frequently, occasionally meeting for lunch at a local cafe. Howard and
Sophie enjoy attending their local community symphony concerts.

Howard and Sophie have been relatively healthy. Howard has some
difficulty walking due to a leg injury from an auto accident 25 years
ago. However, he is able to walk unassisted. Howard has mild
hypertension, which is being treated with an antihypertension medication
he takes once per day. Sophie is a breast cancer survivor, and has been
disease free for the past eight years. Howard and Sophie have Medicare
as their primary insurance.

During the past six months Sophie noticed that Howard was being
forgetful, with such things as having read the morning paper, and he
increasingly did not recall time spent at the high school literacy
program. Recently, Howard was walking with his three-year-old grandson
during a visit to San Diego and was unable to remember his way back to
his daughter's home one block away. Howard went to his physician and
after evaluation was diagnosed with early Alzheimer's disease.

#### Diagnosis and Level of Functioning

Alzheimer's disease is a disorder of the brain's nerve cells that slowly
impairs memory, thinking and behavior, and is eventually fatal.[^638]
The three stages of Alzheimer's disease follow:

-   Mild. A person starts to lose short-term memory. He or she may
    forget names of friends, appointments, or new information.

-   Moderate. The person needs more help with ADLs. Agitation,
    confusion, and anger are common.

-   Severe. The person can no longer make decisions, has difficulty
    speaking, or may not recognize loved ones.[^639]

#### Disease Impact

-   An estimated 4.5 million Americans have Alzheimer's disease. The
    number of Americans with Alzheimer's has more than doubled since
    1980.

-   In 2050, the number of individuals with Alzheimer's could range from
    11.3 to 16 million.

-   Increasing age is the greatest risk factor for Alzheimer's. The
    disease affects 1 in 10 individuals over 65 and nearly half of those
    over 85.

-   A person with Alzheimer's will live an average of 8 years to as many
    as 20 years from the time of symptom onset. From the time of
    diagnosis, people with Alzheimer's survive about half as long as
    those of similar age without the disease.

-   National direct and indirect annual costs of caring for individuals
    with Alzheimer's disease are estimated at \$100 billion.

-   Alzheimer's disease costs American business \$61 billion a
    year---\$24.6 billion covers Alzheimer's health care and \$36.5
    billion covers costs related to caregivers of individuals with
    Alzheimer's, including lost productivity, absenteeism, and worker
    replacement.

-   Seven out of 10 people with Alzheimer's disease live at home, where
    family and friends provide their care. Additional paid care average
    \$12,500 per year. Families pay almost all of this out of pocket.

-   Half of all nursing home residents have Alzheimer's disease.

-   The average cost for nursing home care is \$24,000 per year but can
    exceed \$70,000 per year depending on the state or area of the
    United States.

-   The average lifetime cost of care for an individual with Alzheimer's
    is \$174,000.

-   By 2010, Medicare costs for beneficiaries with Alzheimer's are
    expected to increase 54.4 percent, from \$31.9 billion in 2000 to
    \$49.3 billion. Medicaid expenditures on residential dementia care
    will increase 80 percent, from \$18.2 billion to \$33 billion in
    2010.[^640]

-   On average, a worker who takes care of an older sick relative, such
    as a person with Alzheimer's disease, loses \$659,139 in lost wages,
    pension benefits, and Social Security income.[^641]

#### Services and Costs

Howard and Sophie attended a local Alzheimer's support group at the
recommendation of the nurse practitioner in their physician's office.
The support group provided them with information on community resources
and a support network of Alzheimer caregivers.

Two years after the diagnosis, Howard was able to remain physically
independent. He remained engaged in all his social relationships;
however, his memory loss was increasing at a slow but noticeable rate.
Howard and Sophie continued to do the activities they enjoyed together.
There were increasing times that Howard would become very frustrated and
angry at his memory loss. Howard and Sophie discussed Howard's illness
with their children and developed a living will outlining Howard's
wishes for medical treatment should he become incapable of expressing
his wishes.

Three years after the diagnosis, Sophie had to accompany Howard whenever
he went outside their home. Howard could no longer drive. He required
some help with bathing and dressing, and required the use of a cane when
walking. Sophie and Howard visited less with their friends and no longer
traveled to see their children. Howard and Sophie stopped their
volunteer work. Friends and family were supportive and would visit
Sophie and Howard in their home.

Four years after the diagnosis Howard was able to carry on short simple
conversations, but his short-term memory was severely impaired. Sophie
had to dress and bathe Howard. Howard was incontinent during the night
and required toileting reminders during the day. Sophie became dependent
upon friends to stay with Howard so she could go the store and the bank
and complete errands. Howard had one hospitalization after a fall in the
shower. His hospital stay was only two days for evaluation of a possible
head injury, at a cost of \$3,500. Medicare reimbursement for
rehabilitation to the subacute facility was not possible after his
hospitalization because Howard did not have a three-day qualifying
hospital stay. The hospital case manager arranged for home physical
therapy to evaluate Howard and Sophie's home for safety and assistive
devices to aid Howard's mobility. Sophie was concerned about being able
to manage Howard alone: getting him out of bed, and in and out of a
chair. The Home Health Agency providing the physical therapy did
evaluate Howard for home health services and found that while Howard was
in need of physical care, his needs were not at a skilled level of
nursing care. Therefore, help was not covered under Medicare. The cost
of two weeks (6 one-hour visits) of home health services was \$2,500.
Sophie and her children met together to evaluate the medical resources
available to them and to plan for Howard's increasing physical
dependence and mental deterioration. The concern of the children at this
time was Sophie, who was becoming more isolated and no longer able to
provide the total physical care Howard required.

Howard met the eligibility requirements for the California Medicaid
Waiver Program. The program is for adults who require nursing facility
care but wish to remain at home.[^642] Services provided in the home
include nursing, case management, therapies, and home aide assistance. A
Medicaid waiver allows the state to waive portions of the Social
Security Act referring to Medicaid and implement services that otherwise
may not be covered under Medicaid, may be more cost-effective, or may
enable a senior to remain in the least restrictive environment (i.e.,
the home).[^643] Howard remained in the Medicaid Waiver program for one
year at a cost of \$14,760. Medicaid Waiver Services provided an aide to
bathe Howard and help him into a chair three times per week. A home
health nurse visited once per month to evaluate Howard and his care
plan. Howard died at home at age 77; Sophie was 73. During Howard's last
six months of life, his youngest son, who is single and employed full
time, took a six-month unpaid leave from work to stay with Sophie and
Howard. The son provided total care for Howard and helped Sophie, who
became increasingly exhausted and unable to provide for all of Howard's
needs. Howard and Sophie's other two children provided financial support
for the son who took a leave from his job.

#### Case Summary

Alzheimer's disease as depicted in this case is typical of the disease
course and impact. Howard's family, namely his wife, was responsible for
the majority of his increasing physical needs.[^644] Alzheimer's
disease, as this case represents, is one that results in caregivers'
isolation and causes a long-term burden on a caregiver's emotional,
physical, and financial resources. As in this case, the LTC needs of
those with Alzheimer's disease are not medically acute or reimbursable
under the benefit structure that currently exists.

### Elise's Story

#### General Description

Elise is a 56-year-old African-American woman living in a rural
Mississippi community. Elise is a widow, has a high school education,
and lives alone. She has two adult daughters; one who lives in New York
City and one daughter who is an officer in the Army, currently on active
duty and stationed in Germany. Elise works part time (20 hours per week)
at a local hardware and feed store as a checkout clerk. Additionally,
she works at home babysitting a neighbor's two toddlers three mornings a
week. Elise is active in her church and sings in the choir every Sunday
morning. Although they are distant in geography, Elise is close to her
two daughters. They speak to each other every week by telephone. Elise
has several woman friends with whom she socializes on a regular basis.
Social activities include church events and a sewing group. Elise does
not have a car. She walks to work and church, which are both one block
from her apartment.

Elise's annual income from working is \$10,400, plus a pension from her
deceased husband, which provides her an additional \$875 per month. Her
total annual income is \$20,900. Elise has no health insurance.

Elise has smoked half a pack of cigarettes per day for the past 41
years. She is sedentary in her lifestyle, and is overweight by 65
pounds. Elise was diagnosed with diabetes five years ago and is insulin
dependent. She has been hospitalized twice for high blood sugar and has
recently had difficulty walking due to an open wound on her left foot.
She self-administers insulin. She has a glucose monitor; however, she
cannot afford the test strips to measure her blood glucose levels three
times per day.

#### Diagnosis and Level of Functioning

Diabetes is a disease that affects the body's ability to produce and use
insulin. Insulin is a hormone made in the pancreas. Insulin is used to
get glucose (sugar) from the food eaten into the cells of our body to be
used as a source of energy. With diabetes, the body either doesn't make
enough insulin or can't use the insulin it produces very well. Glucose
then builds up in the blood.

Type 1 Diabetes usually appears in children and young adults, while Type
2 Diabetes usually appears after age 40; however, children who are
overweight are at high risk for developing Type 2 Diabetes. Another type
of diabetes, Gestational Diabetes, appears during pregnancy. Women who
develop gestational diabetes are at greater risk for developing Type 2
Diabetes later in life. In 2000, Mississippi ranked second in the United
States in overall prevalence of diabetes, after Puerto Rico.

The Mississippi State Health Department estimates that 9.3 percent of
Mississippi's adult population had diabetes in 2001. That's an increase
from 7.6 percent in 2000. In 2001, nearly 190,000 individuals age 18 and
over reported that they had been diagnosed with diabetes, and estimates
are that another 95,000 have not yet been diagnosed. In total, it is
estimated that more than a quarter million (285,000) Mississippians had
diabetes in 2001. About 750,000 Mississippians are at increased risk of
undiagnosed (Type 2) diabetes because of the risk factors of age,
obesity, and sedentary lifestyle (lack of exercise).[^645]

Diabetes is the seventh cause of death by disease in the United States,
affecting an estimated 16 million people nationwide. It is the leading
cause of heart disease, kidney disease, adult onset blindness,
amputations, and stroke. In Mississippi, according to the Center for
Disease Control (CDC), approximately 285,000 people have diabetes. Of
those, 90,000 are unaware that they have it. Most people who are
undiagnosed have no symptoms.

#### Diabetes Prevalence

Nationally, 2.3 million (10.8 percent) of African Americans have
diabetes; however, one-third of those affected do not know it. In
Mississippi, figures for 1996 showed that 56,253 African Americans were
diagnosed with diabetes, and a like number of cases went undetected.

-   One in four African Americans between the ages of 65 and 74 has
    diabetes.

-   African Americans are 1.7 times more likely to develop diabetes than
    are white Americans.

```{=html}
<!-- -->
```
-   The number of African Americans diagnosed with diabetes tripled
    between 1963 and 1993.

```{=html}
<!-- -->
```
-   One in four African-American women and one out of five
    African-American men over 50 has diabetes.

-   African-American women are at a higher risk for developing
    gestational diabetes during pregnancy than white women.

-   Diabetes is the fifth leading cause of death for African Americans
    between the ages of 45 and 64, and the third leading cause of death
    for those 65 and older.[^646]

#### Diabetes Complications

African Americans experience higher rates of at least three of the
serious complications of diabetes: blindness, amputation, and end-stage
renal disease (kidney failure).

Diabetic retinopathy is a term used for all anomalies of the small blood
vessels of the retina caused by diabetes, such as weakening of blood
vessel walls or leakage from blood vessels. African Americans are twice
as likely to suffer from diabetes-related blindness.

Diabetes is the most frequent cause of nontraumatic lower-limb
amputations. The risk of a leg amputation is 15 to 40 times greater for
a person with diabetes. Each year 56,000 people lose their foot or leg
to diabetes. African Americans are 1.5 to 2.5 times more likely to
suffer from lower-limb amputations; 10 to 21 percent of all people with
diabetes develop kidney disease. In 1995, 27,900 people initiated
treatment for end-stage renal disease (kidney failure) because of
diabetes. African Americans with diabetes are 2.6 to 5.6 times more
likely to suffer from kidney disease, with more than 4,000 cases of
end-stage renal disease each year.[^647]

The per capita medical expenditures totaled \$13,243 for people with
diabetes and \$2,560 for people without diabetes in 2002. The projected
increase in the numbers of people with diabetes suggests that the annual
cost in 2002 dollars could rise to an estimated \$156 billion in 2010
and to \$192 billion by 2020.[^648]

#### Future Services and Costs

Elise does not qualify for Mississippi Medicaid because her income is
greater than \$826 per month in 2003 and she has not been determined
medically eligible.[^649]

In 2005, Elise will have two hospitalizations due to uncontrolled
diabetes. The second hospitalization will be for surgery on the infected
open wound on her foot. After the surgery, Elise will not be able work
her part-time job at the hardware store. She will start the application
process for SSI and SSDI.

In 2006, Elise will qualify for Mississippi Medicaid, and receive an
annual medical benefit of \$2,969.[^650] She will also be eligible to
apply for both SSI and SSDI through the Social Security Administration,
because she is no longer able to work due to her diabetes. This year,
Elise had four more episodes of acute uncontrolled diabetes. She has not
been able to return to her part-time job. She is at high risk of a
below-the-knee amputation caused by the early stages of necrosis in her
lower left leg. The medical expenses for Elise in 2006 are \$20,500.

Late in 2006, Elise will have a below-the-knee amputation and experience
a postoperative heart attack. She will be admitted to a nursing home
posthospitalization and will undergo a slow recovery and rehabilitation.
The expense of the surgery and nursing home care will be \$38,000.

By the end of 2006, Elise will no longer be able to participate in her
social activities or maintain her home without assistance. She will
become depressed and withdrawn, and will not follow her prescribed diet,
exercise, or insulin regime.

Elise is admitted to a nursing home after a lengthy hospitalization and
development of a larger right leg ulcer, which is failing to heal. Elise
spends the next two years in a nursing home (\$16,010 per year) under a
Medicaid benefit.[^651] If she had SSDI, Medicare would also provide
medical support to the nursing home. In addition to the nursing home
stay, Elise has four acute hospital admissions. She undergoes a right
below-knee amputation and experiences a second heart attack due to
severe vascular disease caused by the uncontrolled diabetes and smoking
history. Elise continues to live in the nursing home. In 2009, she signs
advanced directives defining her wishes for no further treatment to
prolong her life.

Elise has six hospitalizations in 2009 at a cost of \$72,000. Each
subsequent hospitalization is due to vascular insufficiency, heart
failure, and renal failure caused by uncontrolled diabetes. Elise
refuses dialysis for the acute renal failure. She expires in January
2010 in the nursing home. The cause of death is acute renal failure. The
total medical expenses for Elise's care from 2005 to 2010 was more than
\$202,000.

#### Case Summary

Diabetes is a disease characterized by a lack of control of blood sugar.
Although inadequate control of blood sugar levels can cause acute
clinical problems and require hospitalization, in general, the most
common health consequences of diabetes are chronic rather than
acute.[^652] Elise's case exemplifies the chronic characteristics of
diabetes: poor healing of a lower leg wound leading to amputation,
compromised cardiac function, and an increasingly impaired renal
function. Her disease was difficult to control because of her excess
weight, smoking, and inability to monitor her blood sugar. Progression
of disease eventually affected Elise's ADLs and IADLs, making her
totally dependent on others for her care.

### Case Studies Summary 

These six case studies move the discussion from the abstraction of
numbers and dollars to real people and their families in a struggle to
find a coordinated, comprehensive response to their LTSS needs. Despite
the diversity of challenges associated with varying types of disability
and multiple secondary conditions, the underlying human element is the
desire to live independently and with dignity.

The examples of real-life struggles today and projected changes 25 years
later in 2030 help capture both the complexity and significance of
designing an LTSS system sooner rather than later. Several key findings
can be offered from an analysis of the six life stories of individuals
with chronic, intellectual, physical, and mental disabilities.

The current system of responses to individual needs is dependent on
state-specific differences in coverage and resource allocation. Families
and friends are a critical component of an informal caregiving system
that is eroding as America ages. Without federal intervention and
financial assistance, no state can begin to cope with the growing demand
for HCBS. Current state and federal budget deficits and funding
priorities jeopardize a patchwork system of services and supports that
do not meet the current needs of the target population, let alone those
projected into the future.

### Summary of Findings

LTSS cannot be looked at in isolation from other health care needs,
including acute care and mental health service needs. The range of needs
across age and type of disability highlight the importance of service
coordination, access to information, and need for support of the family
as well as the individual with disabilities. Current costs are not a
customized response to individual needs. Costs reflect matching an
individual's circumstances to available services and supports, based on
federal eligibility criteria, with degrees of consumer choice and
direction varied based on the state in which the individual lives.
Medicaid, Medicare, and Social Security dominate the cost profiles and
projections, with the quality of services and support most evident with
active family intervention. The projected costs are dependent on, at a
minimum, no loss of entitlements as we know them today. The evolution of
a consumer-responsive comprehensive system demands additional analysis
of the costs of raising and supporting, at home and in the community,
individuals across a spectrum of functional need from birth through the
aging process. Supporting families in their unpaid caregiving will help
keep public costs lower. However, the balancing of public and private
responsibility for caregiving must be confronted directly by
policymakers through incentives, respite options, flexibility, and
portability of services and skills training.

## Part VII Moving Toward Reform

### Defining who needs LTSS.

The development of public policy for LTSS requires finding a common
ground for defining eligibility. There is not yet a common agreement
among the critical stakeholders as to who needs LTSS. Most data and
definitions are based on individuals age 65 and older. The definitions
range for the target population from a medical diagnostic approach to a
functional assessment. It is impossible for policymakers and researchers
to accurately calculate current and future costs without a clear
consensus as to who should be covered by an LTSS system.

### Growth in population over age 65 needing LTSS.

Regardless of the definition of the target population, there is clear
and undisputable data that the number of people over age 65 with ADLs
and IADLs is growing and will double by 2030. Twenty percent of people
age 65 and over will require assistance with at least one ADL, and 50
percent will require such assistance by age 85. People in need of
assistance with two ADLs will grow from 1.8 million to 3.8 million by
2045.

### Declining disability prevalence for individuals age 65 and older and rising disability rates for those 65 and under.

The research concludes that disability has declined in the 65-and-older
population using ADLs and IADLs as measurement. It is less clear whether
this decline is due to health improvements or environmental changes
aided by increased use of durable medical equipment, including assistive
technology. The prevalence of disability in those 65 and younger is
rising using the chronic condition definition of disability. The
increased longevity of people with lifelong disabilities and its impact
on the need and future costs for LTSS are unclear from the current
literature.

***Changes in disability prevalence across the age span and their impact
on future LTSS costs are unclear.***

There are 38 million people under age 65 reporting some level of
disability; of this group, 25 million have a specific chronic
disability. Depending on the definition used, the estimated population
in need of LTSS under age 65 ranges from a conservative figure of 3.5
million to more than 10 million.

As the prevalence of disability and use of LTSS increases in the
under-age-65 population, it is unclear from the research what effect
this growth will have on the future costs and services of the LTSS
system. It is less clear how many individuals under the age of 65 are in
need of assistance with ADLs and IADLs when different definitions of
disability are used. There is no aggregated data on the overall costs of
LTSS using the NCD/AARP definition, which includes transportation,
nutrition, and housing. It is less clear what services and supports
truly look like for individuals under age 65, across disabilities and
specific age groups, for those working and living independently. The
research shows that individuals under age 65 are heterogeneous and have
specific needs according to gender, age, and type of disability.

### Disparities in LTSS needs among minority populations and impact on future LTSS costs.

::: Definition-Term
A further challenge was found in understanding the correlation between
the disparities in LTSS needs among minority populations and the impact
on future utilization and costs for LTSS. Black children were reported
to be 13 percent more likely than white children to have a reported
activity limitation. A recent GAO study confirmed that the black
population has higher disability rates and lower lifetime earnings and
shorter life expectancies than whites. The issues of poverty, lack of
insurance, and continued segregation from affordable and consistent
health care will increase the future needs and costs for LTSS for a
population that is projected to make up 50 percent of the American
population by 2050.
:::

Individuals with two or more ADL limitations and personal assistance
needs under the age of 65 estimated a shortfall of 16.6 hours of help
and were more likely to be nonwhite females and to live alone. People
who live alone are 10 times more likely to go hungry, 20 times more
likely to miss a meal, and 5 times as likely to lose weight. Paid
assistance for personal assistance services (PAS) goes primarily to
people 65 and older, and working-age people 65 and under rely more on
unpaid PAS.

### Growing prevalence of mental illness and impact on future LTSS costs.

The prevalence of chronic disease and deaths caused by noncommunicable
disease in the United States will increase from 28.1 million to 49.7
million between 1990 and 2020, an increase of 77 percent. Mental illness
will rank number two after heart disease and will replace cancer by 2010
as having a greater impact on death and disability. Medicaid is the
principal public payer for mental health services and represents (36%)
of the \$48 billion in spending. It is unclear what the future LTSS
needs and costs will be for this population.

### Uncertainty of future utilization and costs for LTSS.

Future utilization and costs for LTSS are highly uncertain because of
the rising cost of health care, fiscal challenges of federal and state
governments, increased longevity of high-cost disability populations,
increased prevalence of chronic conditions, and the changing philosophy
regarding where and how LTSS are delivered.

There are 57 million working-age Americans (18--64) with chronic
conditions such as diabetes, asthma, and depression; more than one in
five (12.3 million) live in families that have a problem paying medical
bills. The number of chronically ill people with private insurance who
spend more than 5 percent of their income on out-of-pocket health care
costs increased from 28 percent in 2000 to 42 percent in 2003, a 50
percent increase to 2.2 million people. Less than 55 percent of people
with chronic conditions receive scientifically indicated care, and the
"defect rate" in the quality of American health care is approximately 45
percent.

The impacts on LTSS costs for 6.6 million individuals with chronic care
needs who are uninsured and go without needed care (42%), delay care
(65%), or fail to get needed prescriptions (71%) are unclear, but
without timely intervention they will affect future need and costs.

Eligibility and service pathways to state Medicaid programs have
expanded to meet the growing needs of their uninsured and LTSS
beneficiaries and reflect the growing challenges of economic downturns,
increased health premiums, increased longevity, a low savings rate, and
slower wage growth. The ability of states to respond to current and
future LTSS needs is beyond their capacity and resources.

### Medicaid has added many new eligibility pathways and programs over its 40-year history and extends benefits to many middle-income Americans who are aging and faced with catastrophic LTSS costs. 

Two-thirds of Medicaid spending is for population groups and services
technically defined as optional; these services account for 90 percent
of all LTC Medicaid services. Optional services are currently undergoing
cuts across the country as states struggle with unsustainable growth in
costs and caseloads. It is unclear how vulnerable people with
disabilities are, with the majority of their services and funding
falling into optional categories.

Seventy-five percent of HCBS waivers are for people with MR/DD and are
used to purchase LTSS. The other 25 percent are used for people with
physical disabilities and older people. Three small waiver programs
serve individuals with a primary diagnosis of mental illness, accounting
for 0.2 percent of HCBS waiver expenditures. Further research is needed
to explore the LTSS needs of the other 25 percent using HCBS.

Medicaid spending for acute care and LTC for the blind/disabled category
was \$91,889 billion; \$51,733 billion for the aged category; and
\$59,022 billion for children, adults, and foster care children.

All Medicaid beneficiaries, when broken into the following three
categories, demonstrate a high vulnerability to rising health care costs
and dependence on family members for health coverage and LTSS:

-   Almost 70 percent of the Medicaid caseload (18.8 million) are
    children; the rest are adults who rely solely on Medicaid for both
    Medicaid and SCHIP for an entire year.

-   About 12.3 million used both Medicaid and SCHIP for part of the year
    and were uninsured for two-thirds of the months they spent without
    Medicaid/SCHIP; job-based health insurance covered nearly all the
    remaining months over an entire year.

-   About 9.7 million never relied solely on Medicaid during the year
    and had other sources of coverage; less than 23 percent were
    children, but nearly half (46%) were seniors.

### Most uninsured Americans are working and many are LTSS paraprofessionals.

Forty-nine percent of uninsured Americans are either self-employed or
work for companies with fewer than 25 employees or fewer than 10
employees, of which only 52 percent offer insurance. Over 50 percent of
low-income employees of small firms with incomes below 200 percent of
the federal poverty level are uninsured. Over 2 million health care
paraprofessionals do not work full time, do not receive benefits, and
report wages below the poverty line.

Private LTSS insurance is targeted to individuals age 65 and older and
highly targeted to specific diseases such as Alzheimer's. More than 6
million Americans own LTSS insurance, and 50 percent of the claims paid
are for Alzheimer's and other forms of dementia.

The risk of disability during a worker's career is significant, as are
the consequences to the individual's and the family's financial
security. The risk of disability is higher than premature death and is
higher for older people than younger people; females are more likely to
become disabled than males. A 45-year-old earning \$50,000 per year and
suffering a permanent disability could lose \$1,000,000 in future
earnings. The public underestimates the help that is available from
public disability insurance programs (SSDI and other state-mandated,
short-term programs). Workers compensation benefits cover only
disabilities caused by injury or illness arising on the job---only an
estimated 4 percent of disabilities.

### Lack of data on current and future costs for the under- and over-65 populations with disabilities raises new questions for researchers and policymakers.

The documented growing demand for LTSS in the home and community raises
new questions for researchers and policymakers about current costs and
projected future costs for the under- and over-65 populations with
disabilities. The cost conundrum is exacerbated by four important
factors.

First, there is insufficient data on LTSS costs for individuals under
age 65 across the spectrum of disabilities. Second, there is
insufficient data on the costs of responding to a decreasing population
of informal caregivers and the development of an approximately trained
and paid workforce. Third, there is a lack of agreement on the role and
responsibility of the government versus individuals and families to
cover the costs of current and future LTSS needs. Without research to
explore different public and private cost-sharing scenarios that focus
on the under-age-65 population with disabilities, it would be difficult
to explore the relationship of public financing and private insurance.

### Disability insurance is the missing piece in the financial security puzzle for Americans with disabilities.

The forth and final factor transcends the specific challenges of
development of a responsive LTSS system for the targeted population. The
global economic picture and changing demographics, in addition to the
current federal budget deficit, raise questions about the political will
to maintain current entitlements, let alone craft a new system.

### The issues of identification of current and projected future costs for LTSS are further complicated by the role of formal and informal caregiving, and by workforce shortage and retention issues.

There are 44.4 million American caregivers age 18 and over who provide
unpaid care to an adult age 18 or older. Six out of 10 of these
caregivers work while providing care; most are women age 50 years or
older. The value of donated care is estimated to be more than \$200
billion, and it is unclear from the literature how the changing
demographics will affect the unpaid care industry and whether there will
be cost-shifting to paid care as fewer women become available in the
future.

It is unclear who is going to meet the growing demand for providing
services and supports as the role of the informal caregiver decreases.
The workforce shortage is both a supply and demand problem. As the
65-and-over population increases, the 65-and-under working-age
population will decrease and there will be a shortage of workers and
taxpayers. In addition, there is a shortage of nurses and home care
workers for LTSS. Jobs for nurse's aides are expected to grow by 23.8
percent, while the employment of personal care and home health aides may
grow as much as 58.1 percent between 1998 and 2008. It is unclear how
many workers (the "gray market") are hired and supervised by consumers
who pay for their own care, although the numbers are thought to be
substantial.

Direct care workers (3.1 million) are in short supply and have nearly a
100 percent turnover rate in nursing facilities; home care agencies have
annual turnover rates of 40--60 percent. Direct care workers have low
median hourly wages of \$9.20 an hour, and one-fifth (far more than the
national average of 12--13 percent) earn incomes below the poverty
level; 30--35 percent of all nursing home and home health aides who are
single parents receive food stamps. The financial ability for this
sector to generate higher wage and benefits is limited by the
constraints of third-party payers, such as Medicaid or Medicare, which
are and will continue to be pressured to reduce costs under the weight
of a growing retirement and disability population.

### Americans with disabilities struggle to find a coordinated, comprehensive response to their LTSS needs despite the diversity of challenges associated with the varying types of disability.

The current system of response to individual needs is dependent on
state-specific differences in coverage and resource allocation. Families
and friends are a critical component of an informal caregiving system
that is eroding as America ages. Without federal intervention and
financial assistance, no state can begin to cope with the growing demand
for home and community based-services. Current state and federal budget
deficits and funding priorities jeopardize a patchwork system of
services and supports that do not meet the current needs of the target
population, let alone those projected into the future.

LTSS cannot be looked at in isolation from other health care needs,
including acute care and mental health service needs. The range of needs
across age and type of disability highlights the importance of service
coordination and access to information, and need for support of the
family as well as the individual with disabilities. Current costs are
not a customized response to individual needs. Costs reflect matching an
individual's circumstances to available services and supports, based on
federal eligibility criteria, with degrees of consumer choice and
direction varying according to the state in which the individual lives.
Medicaid, Medicare, and Social Security dominate the cost profiles and
projections, with the quality of services and support most evident with
active family intervention. The projected costs are dependent on, at a
minimum, no loss of entitlements as we know them today.

The evolution of a comprehensive, consumer-responsive system demands
additional analysis of the costs of raising and supporting, at home and
in the community, individuals across a spectrum of functional need from
birth through the aging process. Supporting families in their unpaid
caregiving will help keep public costs lower. However, the balancing of
public and private responsibility for caregiving must be confronted
directly by policymakers through incentives, respite options, and skills
training.

### Americans with disabilities need to be represented in the current public policy discussion about the future of LTSS.

How Americans will decide to solve the current demographic challenges of
an aging and growing disability population is unclear. Few proposals
have provided a total picture of what LTSS means to people with
disabilities from birth till death.

As Americans age there will be fewer workers contributing to the
pay-as-you-go resources in Medicare and Social Security to keep even the
current system afloat. It is unclear how Americans with lifelong
disabilities under age 65 can become self-sufficient and economically
independent through work and build careers without substantial LTSS
reform that allows asset growth and public support for LTSS. It is
unclear how Americans will provide for their own health care and
services and supports in the future without substantial savings and
insurance against the risk of disability.

### LTSS are not portable across states.

LTSS are not portable and cannot be moved with an individual from state
to state, and current LTSS costs are not a customized response to
individual needs. Current costs reflect matching an individual's
circumstances to available services and supports, based on federal
eligibility criteria, with degrees of consumer choice and direction that
vary according to the state in which the individual lives. The fiscal
health of each state and its ability to provide the necessary match to
draw on federal Medicaid resources determines the scope and array of
LTSS for seniors and low-income Americans with disabilities. The
personal assistance service needs of an individual in California could
be similar to those of someone living in Mississippi and yet the
availability of services and funding would vary dramatically.

# 

# Chapter 3

External Advisors and External Policymakers:\
Recommendations for Action

##   {#section-31 .unnumbered}

## Table of Contents: Chapter 3

**Page**

**Part I\
Introduction** 285

**Part II\
Approaches to Development** 287

**Part III\
Expert Panel Discussion and Recommendations** 321

**Part IV\
Conclusion** 327

**Appendix 3.A** 331

##   {#section-32 .unnumbered}

## Part I Introduction

The picture of a ship at sea comes into focus. It struggles in choppy
waters to make progress, becoming more aware of the impending storm.
State and federal budget deficits, competing budget priorities between
homeland and social security, and domestic and global needs make it even
more difficult to navigate safe passage. Demographic shifts, science and
technology advances, and changing expectations of an aging baby boomer
population to maintain and control the quality of independent living
produce sporadic thunder but do not yet hold the sustained interest of
the ship's crew.

As sudden as lightning streaking through a dark sky, current events
attract media and public attention to the complexity of competing
portraits of human identity: life with all its freedom defined by
intellectual and physical capacity, and disability defined by decline
and devalued in some economic terms by limited return on investment. For
two weeks, the plight of Terry Schiavo was the focus of national media
attention---the front page on newspapers and the lead story on the
evening news.

On March 31, 2005, Terry Schiavo died, 13 days after her feeding tube
was removed as a national debate continued about the ethics, politics,
and spiritual significance of her life and death.[^653] Her plight
raised new questions for policymakers, the courts, and families
nationwide about who makes decisions about when life is worth living and
when it is not. President Bush issued a statement lamenting that
attempts at congressional intervention were not successful to override
the decision of Schiavo's husband: "The essence of civilization is that
the strong have a duty to protect the weak."

What has been lost in much of the media attention to the Schiavo case is
the shift of the spotlight from decision making about the end of life to
the growing numbers of Americans living every day in need of assistance
with activities of daily living (ADLs) to be able to achieve an enhanced
level of human dignity and independence. A hundred years ago, the end of
life was typically more sudden as a result of disease or injuries. With
the advances of medical technology, there are growing numbers of
Americans with chronic conditions, below and above 65, whose quality of
life will be defined by the level of supports and personal assistance
that can be accessed through government financial assistance.

The Schiavo family's conflicts about who should decide to end a life and
the attempts at judicial and legislative intervention to substitute
public for private decision making should send an urgent message to all
of us to revisit public responsibility to individuals with significant
disabilities, who are not dead yet! The moral high ground needs to move
beyond emotion and ideology to a much-needed evaluation of public
responsibility to recognize disability as a natural part of human
experience with social and economic implications, to protect the "weak,"
preserve human dignity, and enhance independent living through access to
needed long-term services and supports.

Are policymakers across the political spectrum ready to debate the role
and responsibility of federal and state government to protect the right
to live with dignity, which recognizes the need to confront the economic
terms of meeting such objectives with financial assistance for LTSS?

Terry Schiavo's life and death transfixed the nation. At this writing,
one week later, there is no shortage of expert opinions on policy
options to consider bringing the ship forward in choppy waters and the
impending storm. This chapter offers multiple perspectives of diverse
stakeholders who recognize the urgency and importance of confronting
these complex challenges sooner rather than later.

The recommendations for action are broken into two parts. The first part
offers a summary and analysis of selected approaches to future policy
development by leading organizations and think tanks navigating their
way through the diverse interests and needs of state government,
providers, individuals with disabilities, and families. The second part
offers the perspective of an Expert Panel assembled by the National
Council on Disabilities to share their personal experiences and
expertise on consumer direction, public financing, the workforce, and
service delivery options to respond to pressing needs of individuals and
families across the diverse spectrum of age, geography, disability, and
economic class.

## Part II Approaches to Policy Development

NCD researchers compared and contrasted policy recommendations for
improving access, availability, and quality of LTSS for individuals with
disabilities that have been produced by six different national
organizations:

-   National Academy for State Health Policy (NASHP)

-   National Governors Association (NGA)

-   National Academy of Social Insurance (NASI)

-   Congressional Budget Office (CBO)

-   Americans Disabled for Attendant Programs Today (ADAPT)

-   American Association for Retired Persons (AARP)

Despite varied roles and relationships to advising policymakers at the
federal level, the alignment of strategies proposed and the sense of
urgency to move forward are more consistent than might be expected. All
have a similar starting point. Demand is growing for LTSS that will not
be able to be ignored by policymakers and that will require changes in
structure and financing to respond to consumer preferences for home and
community options. The greatest variance among organization proposals
can be distinguished by the degree of fiscal commitment to a guaranteed
coverage of a comprehensive benefits package organized around consumer
needs and preferences.

### National Academy for State Health Policy

NASHP is a nonprofit organization dedicated to helping states achieve
excellence in health policy and practice. NASHP conducts research on
emerging trends and challenges for states to respond to the needs of
children and adults for health care and LTSS. Activities include policy
analysis, training, and technical assistance to states, and convening
regional and national forums to enable diverse stakeholders to share
innovative and collaborative strategies related to service delivery,
financing, management, and quality issues.

In January 2005, NASHP published a report on improving health and
long-term care (LTC) coverage for low-income Americans.[^654] The
report, "Making Medicaid Work for the 21st Century," was a year-long
effort undertaken by NASHP to develop recommendations that would improve
the Medicaid program. A workgroup was convened of state officials and
national experts representing a broad range of stakeholder interests.
The focus of discussion was on the federal-state relationship in
Medicaid and its financing of health care, LTC, and LTSS. Medicaid
beneficiaries become entitled to benefits adopted by the state; however,
the terms and conditions for a state to receive financial assistance are
defined by policies and requirements of the Federal Government. Federal
rules define benefits that are mandatory and a menu of others that are
optional and defined by the state in terms of scope and population areas
covered. The workgroup focused on three core areas for improvement:
revising the eligibility process for Medicaid financing of
community-based LTSS, incentives to encourage states to offer expanded
coverage of community-based services and supports, and restructuring the
system to improve beneficiary access to a full-range of at-home or
community-based services.

#### Revise Eligibility for Medicaid

The workgroup agreed to an overarching goal: that Medicaid should "serve
eligible populations through policies and enrollment processes that
maximize coverage and ease administration." The workgroup identified
several features of current Medicaid eligibility rules that were
particularly challenging. There is little consistency across states in
how they define and value income and assets when determining whether an
applicant meets Medicaid financial eligibility criteria.[^655] Existing
eligibility rules are more expansive for individuals in an LTC
institution rather than in the community.[^656] The workgroup
recommended that a minimum national income eligibility threshold be
established, with states having the flexibility to expand coverage to
individuals and families above the eligibility floor. The national
minimum eligibility threshold would require states to cover all
individuals with household incomes up to 100 percent of the federal
poverty level. This new requirement would be phased in over four years,
and the Federal Government would offer an enhanced match for new
eligibles. Implementation of this recommendation would provide Medicaid
coverage to 5.3 million new individuals, including 4 million of the
uninsured. When fully implemented, the estimated cost would be \$16.6
billion per year, with an estimated federal share of \$11.2
billion.[^657] When fully phased in, state Medicaid spending would
increase by 4.1 percent. The workgroup also recommended that states have
the option to eliminate the assets test for all Medicaid populations.
States do not currently have the option to eliminate it for Medicaid
enrollees whose eligibility is tied to Social Security Income (SSI).

Separate from financial eligibility for Medicaid, the workgroup also
recommended that states be allowed to set different functional criteria
for institutional and community-based services and supports.[^658]
Separate standards would allow the provision of community-based supports
before an individual's condition deteriorates to the point that
institutional care is the only option.

#### Modify the Benefits Package

The second core area of focus for the workgroup was on the benefits
package and correcting the balance between institutional and home- and
community-based services and supports. With more than 20 years of
experience, and with community supports waiver applications tied to cost
neutrality as compared to institutional care, it is time to move to a
state plan option. The workgroup recommended that states be allowed to
replace 1915(c) waivers with a home- and community-based services (HCBS)
program with the following components:

-   States would submit a plan to the Centers for Medicare and Medicaid
    Services (CMS) describing the services to be covered. Once approved,
    the program would continue without renewal requirements.

-   States could set a higher income threshold for admission to an
    institution and a lower threshold for the HCBS program.

-   The program would not be subject to existing waiver requirements
    (cost neutrality, time-limited approvals, and links to nursing home
    level of care).

-   States would have the discretion to set caps on participation and
    distinguish service options for subpopulations.[^659]

The workgroup recommended that, under the new HCBS programs, states be
allowed to choose to provide optional populations (those with incomes
above the minimal national eligibility threshold) with more restrictive
choices of services and supports.[^660] Two other recommendations from
the workgroup would offer the consumer greater ability to manage and
direct the delivery of services. States should be encouraged to expand
Cash and Counseling Demonstrations that provide beneficiaries with an
individual budget to purchase and mange their own service
delivery.[^661] States should also be encouraged to expand Money Follows
the Person beyond transitioning nursing home residents to individual
residents of intermediate care facilities for the mentally retarded
(ICF/MRs) and for individuals with long-term mental illness[^662]

As part of the approach to expanding benefits, the workgroup also
proposed two other recommendations to improve beneficiary access.
Building on the early results from the Aging and Disability Resource
Centers (ADRCs), states would be encouraged to create single entry
points to provide Medicaid beneficiaries and applicants with information
and assistance in determining eligibility and service needs. A
complementary suggestion by the workgroup is that all beneficiaries
seeking long-term services should provide a standardized assessment to
help determine needs and service options to meet those needs. Assistance
would be provided to help access appropriate services and supports.

#### Provide Financial Incentives to States to Rebalance the Program

The final area for improvements focused on current policies governing
Medicaid financing. Medicaid is currently an open-ended entitlement to
eligible individuals and states. As an entitlement, the Federal
Government must reimburse the state for the federal portion of the cost
for every dollar spent on Medicaid-covered services for eligible
individuals. States' matching rates vary based on the size of low-income
populations. The minimum 50 percent federal matching rate ensures that
states will receive a minimum level of federal cost-sharing.

The workgroup recommended the creation of fiscal incentives to encourage
and support the rebalancing of their LTSS system to favor home and
community. The suggested approach would offer states a temporary, higher
match on community-based services, combined with a continuation of
Systems Change Grants to support infrastructure development.[^663] The
enhanced match would be conditional, with a state required to document
progress in serving more people in homes and communities, measured as a
percentage of the total number of beneficiaries receiving long-term
support, or as a decline in Medicaid-paid nursing home bed days.[^664]

The workgroup emphasized in its concluding comments that the proposed
set of recommendations related to changes in eligibility criteria, the
menu of benefits, and financing are interrelated and must be viewed as a
whole. Strengths of the NASHP proposal include the creation of a minimum
national financial eligibility level for Medicaid, regardless of what
state one lives in, to ensure coverage for all Americans with incomes
below the federal poverty level; a simplified community services program
to replace the waiver; and fiscal incentives to states to relocate their
resources away from institutional settings. The reduction of the number
of uninsured individuals is estimated at about 4 million, or 10 percent
of the total group.[^665] Although the increased projected federal and
state costs are not insignificant (\$16.6 billion), it is a step forward
to reduce variability among states and provide important benefits
coverage to a class of individuals with significant need. The
replacement of the "waiver" context for HCBS and the conversion to a
"program" not tied to institutional cost comparisons, with the added
push of fiscal incentives, is a major step forward.

However, the proposed program offers states the flexibility of carving
out covered populations and limiting geographic scope as a way of
containing costs. The approach does not yet create a true parity between
the entitlement to skilled nursing care and home- and community-based
LTSS. The recommendations to create financial incentives to states to
reallocate their system as part of the design, development, and
expansion of home- and community-based LTSS are not accompanied by any
projections of cost.

This set of recommendations from NASHP focuses exclusively on
improvements to Medicaid. As a result, it does not look at a broader
policy framework for expansion of coverage of LTSS across funding
options and other existing federal authorities.

The following table summarizes key recommendations from the NASHP
report.

Table 3.1. National Academy for State Health Policy

Report/Recommendation: "Making Medicaid Work for the 21st Century,"
January 2005.

+-------+---------+---------+---------+---------+---------+---------+
| **    | *       | **B     | *       | **Fina  | **Stre  | **Weakn |
| Scope | *Eligib | enefits | *System | ncing** | ngths** | esses** |
| of    | ility** | Cov     | D       |         |         |         |
| Appro |         | erage** | esign** |         |         |         |
| ach** |         |         |         |         |         |         |
+-------+---------+---------+---------+---------+---------+---------+
| Fo    | Create  | El      | Create  | To      | Viable  | A       |
| cuses | a       | iminate | single  | acc     | a       | pproach |
| only  | minimum | the     | entry   | elerate | pproach | is      |
| on    | n       | relat   | points  | reba    | to end  | op      |
| Med   | ational | ionship | to      | lancing | instit  | tional, |
| icaid | income  | of cost | provide | the     | utional | not     |
| ch    | elig    | neu     | M       | LTSS    | bias of | r       |
| anges | ibility | trality | edicaid | system, | Me      | equired |
|       | th      | between | benefi  | states  | dicaid. | for     |
|       | reshold | Home-   | ciaries | would   |         | states. |
|       | to      | and     | and     | receive | Fiscal  |         |
|       | cover   | C       | app     | a       | inc     | States  |
|       | all     | ommunit | licants | higher  | entives | can     |
|       | indi    | y-Based | ass     | match   | for     | carve   |
|       | viduals | S       | istance | on a    | states  | out who |
|       | with    | ervices | with    | te      | to      | is      |
|       | ho      | (HCBS)  | dete    | mporary | re      | el      |
|       | usehold | waivers | rmining | basis   | balance | igible, |
|       | incomes | and     | elig    | for     | LTSS    | limit   |
|       | up to   | instit  | ibility | HCBS.   | system. | scope   |
|       | 100     | utional | based   |         |         | of      |
|       | percent | care.   | on      | States  | Create  | be      |
|       | of the  |         | service | would   | M       | nefits, |
|       | federal | Create  | needs.  | be      | edicaid | and     |
|       | policy  | a new   |         | r       | state   | waive   |
|       | level.  | HCBS    | States  | equired | plan    | st      |
|       |         | program | would   | to      | option. | atewide |
|       | Set     | as a    | be      | d       |         | co      |
|       | di      | state   | enc     | ocument | En      | verage. |
|       | fferent | M       | ouraged | p       | courage |         |
|       | fun     | edicaid | to      | rogress | use of  | Further |
|       | ctional | plan    | provide | in      | con     | r       |
|       | c       | option. | e       | serving | sumer-d | esearch |
|       | riteria |         | ligible | more    | irected | is      |
|       | for     | States  | parti   | people  | ind     | needed  |
|       | instit  | define  | cipants | in HCBS | ividual | on cost |
|       | utional | the     | an      | and a   | b       | of      |
|       | and     | b       | ind     | decline | udgets. | pr      |
|       | c       | enefits | ividual | in      |         | oposal. |
|       | ommunit | c       | budget  | M       | Create  |         |
|       | y-based | overage | to      | edicaid | single  | Does    |
|       | s       | re      | p       | paid    | points  | not     |
|       | ervices | garding | urchase | nursing | of      | look    |
|       | and     | lo      | and     | home    | entry   | outside |
|       | su      | ng-term | manage  | bed     | to      | of      |
|       | pports. | s       | their   | days.   | o       | M       |
|       |         | ervices | own     |         | vercome | edicaid |
|       |         | and     | service | C       | system  | at      |
|       |         | s       | de      | ontinue | fragmen | other   |
|       |         | upports | livery. | Systems | tation. | federal |
|       |         | (LTSS)  |         | Change  |         | autho   |
|       |         | and can | P       | Grants  |         | rities. |
|       |         | set     | rograms | from    |         |         |
|       |         | caps to | would   | Centers |         |         |
|       |         | partici | c       | for     |         |         |
|       |         | pation. | ontinue | M       |         |         |
|       |         |         | without | edicare |         |         |
|       |         |         | waiver  | and     |         |         |
|       |         |         | renewal | M       |         |         |
|       |         |         | requir  | edicaid |         |         |
|       |         |         | ements. | S       |         |         |
|       |         |         |         | ervices |         |         |
|       |         |         | States  | (CMS)   |         |         |
|       |         |         | could   | to help |         |         |
|       |         |         | set a   | states  |         |         |
|       |         |         | higher  | with    |         |         |
|       |         |         | income  | b       |         |         |
|       |         |         | th      | uilding |         |         |
|       |         |         | reshold | ca      |         |         |
|       |         |         | for     | pacity, |         |         |
|       |         |         | ad      | policy  |         |         |
|       |         |         | mission | c       |         |         |
|       |         |         | to an   | hanges, |         |         |
|       |         |         | inst    | and     |         |         |
|       |         |         | itution | infrast |         |         |
|       |         |         | and a   | ructure |         |         |
|       |         |         | lower   | devel   |         |         |
|       |         |         | th      | opment. |         |         |
|       |         |         | reshold |         |         |         |
|       |         |         | for the |         |         |         |
|       |         |         | HCBS    |         |         |         |
|       |         |         | p       |         |         |         |
|       |         |         | rogram. |         |         |         |
|       |         |         |         |         |         |         |
|       |         |         | States  |         |         |         |
|       |         |         | allowed |         |         |         |
|       |         |         | to      |         |         |         |
|       |         |         | carve   |         |         |         |
|       |         |         | out     |         |         |         |
|       |         |         | covered |         |         |         |
|       |         |         | popu    |         |         |         |
|       |         |         | lations |         |         |         |
|       |         |         | and     |         |         |         |
|       |         |         | limit   |         |         |         |
|       |         |         | geo     |         |         |         |
|       |         |         | graphic |         |         |         |
|       |         |         | co      |         |         |         |
|       |         |         | verage. |         |         |         |
+-------+---------+---------+---------+---------+---------+---------+

### National Governors Association

The NGA is the collective voice of the nation's governors. In 2003, NGA
Chairman Governor Dirk Kempthorne of Idaho created a task force to
identify public policies that can help individuals live independently
and with dignity.[^666] In his charge to the task force, Kempthorne
urged the group to advance best practices in community care.
"Overwhelmingly, Americans want to remain in their communities and
places they call home."[^667] In describing the scope of inquiry,
Kempthorne encouraged an examination of effective transportation
systems, emerging technologies, and reliable housing options, as well as
identification of innovative practices to encourage and assist
caregivers.[^668] Over the course of the past 15 months, through
numerous forums and public policy research, the Lifetime of Health and
Dignity Task Force developed multiple recommendations for future policy
development. The discussion frequently returned to focus on the Medicaid
and Medicare programs, which are the dominant federal means of
assistance for our nation's most vulnerable citizens, who would
otherwise lack the means to afford the health care and LTSS they need.

At their winter 2003 meeting, the governors adopted a statement of
principles to be considered concerning any proposal to reform Medicaid.
Included in the statement of principles is a finding that "the Medicaid
statute has failed to keep pace with the changing health care system,
current medical practices, and the needs of Americans in the 21st
Century."[^669]

The proposed principles or policy framework adopt a core set of concepts
that are reflected in the recommendations reviewed and analyzed from
other national-level organizations. There is a need for more flexibility
for states in the management of the Medicaid program. Current HCBS
waiver authority must be revised to rebalance the current system of
supports to favor community versus institutional settings.[^670]
However, the NGA platform goes farther to address a range of issues of
major concern to the governors and states. All three recommendations
touch the sensitive issue of cost and allocation of responsibility if
changes and improvements are to be made to enable all Americans to live
longer with independence and dignity.

-   The Medicare and Medicaid programs are interrelated, and any change
    made to Medicare, whether to strengthen its solvency, address its
    financing, or for other purposes, should be considered in
    conjunction with reforms to Medicaid.

-   The Federal Government should pay 100 percent of the cost of any new
    Medicaid mandates imposed under an Act of Congress, federal
    regulation, or court decision based on federal laws and regulations.

-   It is also unacceptable for Medicaid to be the only LTC program in
    the country. Other sources of coverage, whether federal, employer
    based, personal, familial, or community based, must be
    developed.[^671]

It is not surprising that the governors are concerned about increased
costs and the shifting of responsibility to the states. The last three
Administration budget proposals have targeted Medicaid for federal cost
reductions that would shift increased responsibility for beneficiaries
to states.[^672] Total Medicaid spending has increased rapidly in recent
years. In the past four years, Medicaid spending has increased by more
than 50 percent.[^673] Over the past two decades, the average share of
state budgets set aside for Medicaid spending increased from 8 percent
in 1985 to 22 percent in 2003.[^674] In 2005, Medicaid spending will
surpass spending for elementary and secondary education as the largest
single item in overall state budgets.[^675] According to CMS and the
Congressional Budget Office, Medicaid spending is expected to continue
to grow at a rate exceeding state revenue growth, driven by caseload
growth, an aging population in greater need of assistance, and medical
advances.[^676]

Despite cost concerns, the NGA task force explored additional, diverse
options to change the current system of LTSS. A recommended list of "20
Actions Governors Can Take" was developed that divides proposed actions
into four major categories: (1) promote community-based care; (2)
support family caregivers and home care workers; (3) encourage personal
financial planning; and (4) promote health and wellness.[^677] All 20
recommendations are based on promising practices in one or more states
concerning services for seniors. Several would require federal policy
reform. However, many would also benefit individuals with disabilities
at a younger age in need of LTSS. The review of 13[^678] of the 20
recommendations was selected because of their relevance to the larger
target audience of individuals with disabilities below and above the age
of 65.

#### Promote Community-Based Care

1\. Promote elder-ready communities to enable individuals to live in
their homes and neighborhoods as long as possible. Based on the livable
communities framework,[^679] state and local governments can work
together to improve availability of affordable housing and
transportation, and provide financial assistance with home modifications
to enable an individual with the onset of disability to "age in place."

2\. Establish fast-track eligibility for HCBS. Following a hospital
stay, individuals are routinely referred to nursing homes instead of
being offered community-based services. Hospital discharge planners are
often more familiar with nursing home eligibility rules than with
options for coverage of in-home or community care. Several states have
streamlined the eligibility process for HCBS waivers and established
presumptive eligibility for community care that makes services available
within 48 hours.

3\. Improve access to long-term support options by developing Web-based
information and assistance systems. With the complex set of rules and
requirements that determine eligibility for services and supports and
that are often different for each public funder and from state to state,
numerous states are now developing information-rich Web sites to provide
consumer-friendly information to determine support options and
individual eligibility. Computer-based information systems are
complemented by counselor support in local neighborhood centers.

4\. Establish one-stop shops. Pioneered in Wisconsin, multiple sites are
now piloting ADRCs with financial support from CMS and the
Administration on Aging. Assistance is provided to both public- and
private-pay individuals to better coordinate information and access to
multiple federal, state, and local programs.

5\. Include consumer direction in all state community-based service
programs. Building on positive evaluations from selected state Cash and
Counseling Demonstrations, consumer direction is an essential program
design element that allows individuals with disabilities to have maximum
choice and control over their support plan, including assessment of
needs, determination of how those needs will be met, selection of
providers, and management of costs within an individual budget.

6\. Coordinate transit funding sources. Access to reliable
transportation services can be strengthened through linking
transportation resources to health and social service programs. Improved
coordination between state and local governments and public and private
service providers can improve availability in urban and rural settings.

#### Support Family Caregivers and Home Care Workers

7\. Improve the tax treatment of caregiver expenses. State caregiver tax
credits generally range from \$500 to \$1,500. At least 26 states and
the District of Columbia have either refundable or nonrefundable tax
credits for dependent care that generally benefit low-income taxpayers.

8\. Expand Family and Medical Leave Act (FMLA) benefits. FMLA provides
employees of businesses with at least 50 employees with at least 12
weeks of unpaid leave each year to care for a newborn or seriously ill
family member, or to recover from their own serious health conditions.
To further support family caregivers, the federal FMLA provisions could
be expanded to cover employees in workplaces with fewer than 50
employees, allow leave for family medical needs that are not covered by
the federal law, extend the periods for family and medical leave, and
offer paid leave benefits.

9\. Inform home care workers about eligibility for federal tax credits.
Tax refunds for a low-income worker with a family can be
significant---up to \$4,200 under the provisions of the earned income
tax credit (EITC). Volunteer tax preparation assistance is available in
most major cities.[^680]

10\. Encourage and assist in developing employer health insurance
purchasing pools. Several states have organized public authorities that
serve as employer of record for self-employed home care workers to
create a purchasing pool. Between 40 and 45 percent of paraprofessional
home care workers lack health coverage. Health coverage options will
help attract and retain direct care workers.

11\. Connect in-home workers to existing supports for taxes, housing,
health care, transportation, and other service needs of low-wage
workers. Selected states have created direct care worker resource
centers and have coordinated worker recruitment and links to support
services through the workforce development system of One-Stop Career
Centers.[^681]

12\. Encourage personal financial planning. Selected states are offering
limited tax credits or deductions to encourage purchase of LTC insurance
premiums. Encourage more consistent coverage across states with tax
incentives for purchase of policies that benefit other family members.

13\. Promote the use of reverse mortgages for long-term supports.
Reverse mortgages allow homeowners to stay in their homes while cashing
in on the equity they have invested. Funds received in a lump sum, as
monthly payment over a fixed period of years, as a lifetime annuity, or
as a flexible line of credit are considered tax free and do not count as
income toward social security, Medicare, or Medicaid benefits. The full
loan amount, including principal and interest, is repaid to the lending
institution when the borrower or borrower's spouse sells the home,
moves, or dies.

With its statement of principles for Medicaid reform and the breadth of
recommendations for the creation of a more comprehensive system of
support for individuals with disabilities to live with independence and
dignity, NGA has offered possible ways to reexamine the current policy
framework. Although there are no cost projections for any of the
specific proposals, there are clear concerns about sharing the costs
with the states. NGA wants any new federal Medicaid mandate to be 100
percent funded by the Federal Government. There is an understanding that
no single federal program or funding authority offers a full solution to
increasing long-term services demands and changing consumer preferences.
There is an interest in embracing consumer direction and choice, as well
as state commitment to continued expansion of the benefits options that
support the family and recognize the important role of family
caregiving, which reduces public costs. A comprehensive solution will
need to improve collaboration among federal, state, and local government
and public and private sector interests. The NGA recommendations make it
clear that the allocation of costs is at the center of future
discussions and debate.

The following table summarizes the NGA recommendations.

Table 3.2. National Governors Association

Report/Recommendation: "Lifetime of Health and Dignity Task Force,"
2004.\
"Policy Resolution HHS-27," Winter Meeting, 2005.\
"Twenty Actions Governors Can Take," 2004.

+-------+--------+-------+--------+-----------+-------------+--------+
| **    | **E    | **Ben | **     | **Fi      | **          | **     |
| Scope | ligibi | efits | System | nancing** | Strengths** | Weakne |
| of    | lity** | Cover | De     |           |             | sses** |
| Appro |        | age** | sign** |           |             |        |
| ach** |        |       |        |           |             |        |
+-------+--------+-------+--------+-----------+-------------+--------+
| Focus | Est    | Does  | Est    | Federal   | Recognition | Takes  |
| on    | ablish | not   | ablish | G         | of the      | strong |
| Med   | fast   | d     | On     | overnment | multiple    | po     |
| icaid | -track | efine | e-Stop | should    | dimensions  | sition |
| and   | eligi  | the   | Shops  | pay 100   | to the      | a      |
| Medi  | bility | ben   | to     | percent   | challenges  | gainst |
| care, | for    | efits | better | of the    | being faced | any    |
| but   | home-  | cov   | coor   | cost of   | by          | new    |
| with  | and    | erage | dinate | any new   | individuals | un     |
| the   | com    | for   | infor  | Medicaid  | and         | funded |
| r     | munity | HCBS. | mation | mandates. | families in | f      |
| ecogn | -based |       | on     |           | growing     | ederal |
| ition | se     | Does  | eligi  | Any       | numbers.    | ma     |
| that  | rvices | pr    | bility | changes   |             | ndates |
| other | (      | omote | and    | to        | Endorse     | as a   |
| strat | HCBS). | the   | access | Medicare  | livable     | sol    |
| egies |        | e     | to     | must      | communities | ution. |
| must  | Co     | lder- | d      | address   | framework   | Any    |
| be    | nsider | ready | iverse | the       | to improve  | improv |
| devel | presu  | or    | public | impact on | coordinated | ements |
| oped, | mptive | li    | and    | Medicaid, | accessible  | to     |
| incl  | eligi  | vable | p      | which     | tra         | co     |
| uding | bility | c     | rivate | shares    | nsportation | verage |
| emplo | for    | ommun | se     | costs     | and housing | under  |
| yer-b | HCBS   | ities | rvices | between   | strategies. | Me     |
| ased, | based  | co    | and    | the       |             | dicaid |
| fa    | on     | ncept | sup    | Federal   | Support     | must   |
| mily, | func   | and   | ports. | G         | consum      | be 100 |
| and   | tional | encou |        | overnment | er-directed | p      |
| pr    | asse   | rages | I      | and the   | individual  | ercent |
| ivate | ssment | state | mprove | states.   | budgets and | fed    |
| s     | of     | and   | infor  |           | active      | erally |
| ector | needs. | local | mation | Improve   | consumer    | fin    |
| solut |        | g     | access | tax       | choice and  | anced. |
| ions. | I      | overn | by     | benefits  | management  |        |
|       | nvolve | ments | deve   | for       | of public   | The    |
|       | the    | to    | loping | dependant | resources.  | cost   |
|       | co     | work  | Web    | care to   |             | issue  |
|       | nsumer | tog   | -based | help      | Support     | steers |
|       | ac     | ether | infor  | families  | improved    | NGA    |
|       | tively | to    | mation | with the  | information | rec    |
|       | in     | im    | sy     | expenses  | access and  | ommend |
|       | asse   | prove | stems. | of        | presumptive | ations |
|       | ssment | av    |        | informal  | eligibility | away   |
|       | of     | ailab | I      | ca        | for         | from   |
|       | needs  | ility | nclude | regiving. | community   | ch     |
|       | and    | of    | co     |           | services    | anging |
|       | d      | affor | nsumer | Encourage | based on a  | the    |
|       | etermi | dable | dir    | and       | functional  | c      |
|       | nation | ho    | ection | assist in | assessment  | urrent |
|       | of an  | using | in all | d         | rather than | HCBS   |
|       | indi   | and   | state  | eveloping | on the      | waiver |
|       | vidual | trans | com    | employer  | in          | p      |
|       | s      | porta | munity | health    | stitutional | rocess |
|       | ervice | tion, | -based | insurance | care bias   | or     |
|       | plan   | and   | pro    | p         | of current  | cr     |
|       | to     | fina  | grams. | urchasing | system.     | eation |
|       | meet   | ncial |        | pools to  |             | of new |
|       | those  | assis |        | help      | Support     | state  |
|       | needs. | tance |        | attract   | expanded    | plan   |
|       |        | with  |        | and       | tax         | option |
|       |        | home  |        | retain    | benefits    | or     |
|       |        | modi  |        | direct    | for         | entitl |
|       |        | ficat |        | care      | families    | ement. |
|       |        | ions. |        | workers.  | involved in |        |
|       |        |       |        |           | dependent   | Exp    |
|       |        |       |        | Promote   | care and    | ansion |
|       |        |       |        | the use   | assistance  | of tax |
|       |        |       |        | of        | in health   | be     |
|       |        |       |        | reverse   | coverage    | nefits |
|       |        |       |        | mortgages | for direct  | for    |
|       |        |       |        | to        | care        | family |
|       |        |       |        | increase  | workers to  | care   |
|       |        |       |        | personal  | help with   | giving |
|       |        |       |        | funding   | recruitment | needs  |
|       |        |       |        | to pay    | and         | addi   |
|       |        |       |        | for       | retention   | tional |
|       |        |       |        | long-term | challenges. | re     |
|       |        |       |        | services  |             | search |
|       |        |       |        | and       |             | r      |
|       |        |       |        | supports  |             | elated |
|       |        |       |        | (LTSS).   |             | to     |
|       |        |       |        |           |             | cost   |
|       |        |       |        | Expand    |             | and    |
|       |        |       |        | family    |             | an     |
|       |        |       |        | and       |             | alysis |
|       |        |       |        | medical   |             | of the |
|       |        |       |        | leave     |             | impact |
|       |        |       |        | benefits  |             | r      |
|       |        |       |        | to        |             | elated |
|       |        |       |        | further   |             | to a   |
|       |        |       |        | support   |             | public |
|       |        |       |        | family    |             | system |
|       |        |       |        | ca        |             | of     |
|       |        |       |        | regivers. |             | sup    |
|       |        |       |        |           |             | ports. |
+-------+--------+-------+--------+-----------+-------------+--------+

### National Academy of Social Insurance

NASI is a nonprofit organization made up of the leading experts on
social insurance. Members include policy analysts in income security and
health care financing, economists, political scientists, administrators
of public and private benefit programs, and practitioners in related
fields. Social insurance encompasses broad-based systems for insuring
workers and their families against economic insecurity caused by loss of
income from work and the cost of health care. NASI convenes study panels
to conduct research and issue findings and policy recommendations.

In January 2003, the Study Panel on Medicare and Chronic Care in the
21st Century issued a report titled "Building a Better Care System."
When Medicare was first established in 1965, it was modeled after the
health insurance system of that time. Medicare served primarily as a
claims payer. Its benefits package and reimbursement systems were not
designed for chronic conditions.[^682] The study panel adopted a
definition of a chronic condition as "a condition which lasts (or is
expected to last) a year or longer, limits what a person can do, and
requires ongoing care."[^683] The report identified the cost of managing
chronic conditions as substantial. A disproportionate amount of Medicare
dollars are spent on beneficiaries with chronic conditions.
Beneficiaries with five or more chronic conditions account for 20
percent of Medicare spending.[^684]

The need to manage chronic conditions has increased over the past two
decades. The number of beneficiaries is expected to continue to grow
from 40 million in 2001 to 77 million by 2030. The number of
beneficiaries over age 85---those with the greatest chronic care
needs---is projected to grow from 4.3 million to 8.5 million over the
same period.[^685] The report also noted that the disabled population
under the age of 65 has grown even faster than the aged population.
Enrollment rose from 2.2 million in 1975 to 5.6 million in 2000. By
2017, Medicare is expected to cover 8.5 million individuals with
disabilities.[^686]

The study panel adopted three principles for selecting policy changes to
promote better chronic care:

-   Medicare should recognize and aim to focus on beneficiaries' needs
    and preferences.

-   Payment should support recommended models of care delivery.

-   Policies should aim for efficient care with beneficiaries getting
    the best value for the dollars spent. Policies should help
    beneficiaries maintain function and quality of life.[^687]

The panel's recommendations include a long-term vision for Medicare and
six short- to mid-term requirements. The long-term vision entails a
shift in focus to chronic care with access to needed services to enhance
function and quality of life and financial protection from costs that
pose barriers to needed supports.[^688] There would be a seamless
continuum across acute, chronic, long-term, and end-of-life care.

To achieve the long-term vision, the panel recommended six key areas for
improvement, some of which could be implemented immediately.

1\. Provide beneficiaries with financial protection from chronic
conditions. To limit cost-sharing requirements, add an annual cap on
out-of-pocket expenditures for covered services.

2\. Expand the continuum of care beyond those services presently covered
by Medicare. The current statute prohibits payment for services that are
"not reasonable or necessary for the diagnosis or treatment of illness
or injury or to improve the functioning of a malformed body member"
(1862 (a)).[^689] The panel recommended a change in statutory language
to prohibit payment for services that "are not reasonable and necessary
for the prevention, diagnosis, treatment of illness or injury, or to
improve, maintain, or slow the decline of function."[^690] This change
would shift the Medicare focus to allow for coverage of preventive and
rehabilitative services that would enhance function and quality of life.
The panel suggested the addition of a prescription drug benefit as the
most important addition for management of chronic conditions. The report
was written before the passage by Congress in 2003 of the Medicare
Modernization Act.[^691] Other suggested changes in coverage included
durable medical equipment, with the specific intent of maintaining or
restoring function and support of rehabilitation as a tool to improve,
maintain, or slow the decline of function.[^692]

3\. Promote new models of care. The panel adopted the position that
incremental changes in policy will not be sufficient to significantly
improve the system of services and supports for individuals with chronic
conditions. Services must be integrated for individuals dually eligible
for Medicare and Medicaid. Payments should support the redesign and
expanded benefits coverage. The risk adjustment of evaluation and
management codes should be considered. Add-on payments for beneficiaries
with specific chronic conditions would compensate providers for longer
visits, additional supports, and coordination with other providers to
improve the quality of care.[^693] The panel also suggested the design
and testing of a variety of payment models for different subpopulations.

4\. Strengthen the role of CMS as a purchaser of services. The panel
supported the use of enhanced payments to providers who provide
high-quality chronic care. The panel recognized the challenges of
implementation of such a system and suggested that CMS fund
demonstrations to improve measures and measurement on the quality of
chronic care and examine strategies to make the information available to
beneficiaries. Quality-of-care reporting requirements would eventually
be required of individual providers, physician groups, and health
plans.[^694]

5\. Support enhanced information systems. Medicare should support the
implementation of information systems that track beneficiaries across
multiple providers and care settings. Information systems should
transition to longitudinal electronic records from handwritten case
files. The panel notes that information systems can proactively
facilitate care, reduce provider errors, and improve CMS oversight and
assessment of quality of care, highlight potential areas for
improvement, and provide evidence of which practices optimize quality of
care.[^695] CMS should also promote the collection and standardization
of health and functional assessment data. The current separate measures
and information systems for different provider settings make it
difficult to track an individual's health, function, and quality of life
across care settings.[^696]

6\. Implement and support funding for research and demonstration
projects. The panel suggested that CMS sponsor a wide variety of
research and demonstration projects. Projects to consider included
alternative models of care management, research on risk adjustment,
options to increase family participation in care and support decisions,
and other approaches to improve quality of care for specific
subpopulations with functional and cognitive limitations.[^697]

The NASI panel did not attempt to project the costs of implementing
their recommendations. It did, however, prioritize their top three
suggestions for federal policymakers. Their priority recommendations
were to limit beneficiary costs by adding an annual cap for
out-of-pocket expenses, support new models of care by risk-adjusting
evaluation and management codes, and implement an information system
that tracks beneficiaries across multiple providers and care settings.
The panel's focus on care reflects the influence of the medical system
historically on a population increasingly determined to have a greater
role in assessment and management of service and support plans.

There is recognition of the need for change that would significantly
alter and improve the Medicare program for a growing population that is
younger and more disabled. These changes will require significant
additional spending of public resources. The NASI panel was more
narrowly focused on a single federal program and did not look at the
interrelationship of other federal authorities outside of Medicare and
Medicaid. Analysis and measurement of quality of life for people with
chronic conditions would evaluate alternative care settings for
rehabilitation and enhanced function. However, challenges of affordable
housing and aging-in-place at home were beyond the scope of inquiry. The
panel suggests testing alternative payment models but leaves the scope
of options to future research and demonstration activities. The panel
does offer an important shift in focus for Medicare that suggests the
possible framework for a more comprehensive set of benefits "to improve,
maintain, or slow the decline of function."

The following table summarizes the NASI recommendations.

Table 3.3. National Academy of Social Insurance

Report/Recommendation: "Medicare and Chronic Care in the 21st
Century---Building a Better Care System," 2003.

+---------+---------+---------+---------+---------+---------+---------+
| **Scope | *       | **B     | *       | **Fina  | **Stre  | **Weakn |
| of      | *Eligib | enefits | *System | ncing** | ngths** | esses** |
| App     | ility** | Cov     | D       |         |         |         |
| roach** |         | erage** | esign** |         |         |         |
+---------+---------+---------+---------+---------+---------+---------+
| Focuses | Allow   | Expand  | S       | Limit   | Support | There   |
| only on | payment | c       | ervices | bene    | of new  | are no  |
| changes | for     | overage | must be | ficiary | models  | cost    |
| to      | s       | to      | better  | cost-   | that    | proj    |
| M       | ervices | include | int     | sharing | are at  | ections |
| edicare | that    | durable | egrated | with an | risk of | for     |
| and the | are     | medical | for     | annual  | ad      | this    |
| growing | rea     | eq      | indi    | cap on  | justing | p       |
| pop     | sonable | uipment | viduals | out-of  | eva     | roposed |
| ulation | and     | with    | dually  | -pocket | luation | change  |
| with    | ne      | the     | e       | expen   | and     | in      |
| chronic | cessary | s       | ligible | ditures | man     | c       |
| cond    | for the | pecific | for     | for     | agement | overage |
| itions. | tr      | intent  | M       | covered | codes   | and     |
| Does    | eatment | of      | edicare | se      | under   | focus   |
| re      | of      | main    | and     | rvices. | Me      | of      |
| cognize | illness | taining | Me      |         | dicare. | Me      |
| the     | or      | or      | dicaid. | C       |         | dicare. |
| int     | injury  | re      |         | onsider | Improve |         |
| errelat | to      | storing | Support | risk    | coord   | Narrow  |
| ionship | i       | f       | i       | adj     | ination | focus   |
| with    | mprove, | unction | mproved | ustment | across  | on      |
| M       | ma      | and     | info    | of      | funders | M       |
| edicaid | intain, | support | rmation | eva     | and     | edicaid |
| for     | or slow | of      | systems | luation | care    | and     |
| future  | the     | rehabil | that    | and     | s       | M       |
| policy  | decline | itation | track   | man     | ettings | edicare |
| devel   | of      | as a    | benefi  | agement | through | leaves  |
| opment. | fu      | tool to | ciaries | codes   | an      | out     |
|         | nction. | i       | across  | with    | e       | consid  |
|         |         | mprove, | m       | add-on  | nhanced | eration |
|         |         | ma      | ultiple | p       | info    | of      |
|         |         | intain, | pr      | ayments | rmation | other   |
|         |         | or slow | oviders | to      | system  | federal |
|         |         | the     | and     | cover   | that    | auth    |
|         |         | decline | care    | costs   | tracks  | orities |
|         |         | of      | se      | of      | benefi  | also    |
|         |         | fu      | ttings. | benefi  | ciaries | af      |
|         |         | nction. |         | ciaries | across  | fecting |
|         |         |         | Stan    | with    | m       | quality |
|         |         | Shift   | dardize | the     | ultiple | of life |
|         |         | the     | health  | need    | pro     | for the |
|         |         | focus   | and     | for     | viders. | t       |
|         |         | of      | fun     | more    |         | argeted |
|         |         | M       | ctional | in      | Re      | pop     |
|         |         | edicare | ass     | tensive | cognize | ulation |
|         |         | to      | essment | su      | the     | with a  |
|         |         | chronic | data    | pports. | need to | s       |
|         |         | care    | across  |         | change  | pecific |
|         |         | with    | care    | Conduct | c       | e       |
|         |         | access  | se      | add     | overage | mphasis |
|         |         | to      | ttings. | itional | of      | on      |
|         |         | needed  |         | r       | M       | coord   |
|         |         | s       | Support | esearch | edicare | ination |
|         |         | ervices | r       | to      | for a   | between |
|         |         | to      | esearch | und     | growing | housing |
|         |         | enhance | and     | erstand | pop     | ass     |
|         |         | f       | demonst | more    | ulation | istance |
|         |         | unction | rations | about   | that is | and     |
|         |         | and     | to      | cost    | younger | service |
|         |         | quality | learn   | and the | and     | needs.  |
|         |         | of      | more    | impact  | more    |         |
|         |         | life.   | about   | of a    | di      |         |
|         |         |         | app     | risk-   | sabled. |         |
|         |         |         | roaches | benefit |         |         |
|         |         |         | to      | a       | Limit   |         |
|         |         |         | improve | pproach | out-of  |         |
|         |         |         | quality | and     | -pocket |         |
|         |         |         | of care | options | e       |         |
|         |         |         | for     | to      | xpenses |         |
|         |         |         | s       | i       | a       |         |
|         |         |         | pecific | ncrease | nnually |         |
|         |         |         | subpopu | family  | for     |         |
|         |         |         | lations | partic  | benefic |         |
|         |         |         | with    | ipation | iaries. |         |
|         |         |         | fun     | in care |         |         |
|         |         |         | ctional | and     |         |         |
|         |         |         | and     | support |         |         |
|         |         |         | co      | dec     |         |         |
|         |         |         | gnitive | isions. |         |         |
|         |         |         | limit   |         |         |         |
|         |         |         | ations. |         |         |         |
+---------+---------+---------+---------+---------+---------+---------+

### Congressional Budget Office

The CBO conducts policy research at the request of members of Congress
and congressional committees. Its mission is to provide independent,
objective information to help consider policy options for the future. At
the request of the House Budget Committee, the CBO's Health and Human
Services Division analyzed the current state of financing for LTC and
delineated a range of policy approaches to consider for future policy
development. A report entitled "Financing Long-Term Care for the
Elderly" was issued in April 2004. In keeping with its mandate to
provide impartial analysis, the report contains no recommendations.
However, CBO does provide a careful analysis of the current context to
consider increasing costs affected by demographic trends that demand the
attention of policymakers. Although the target population is more narrow
than the larger group of individuals across the age span with LTSS
needs, the CBO analysis is relevant and helpful to the understanding of
recent growth in public spending and the possible relationship between
public and private financing.

CBO explains that the need for LTC is already substantial, even without
the aging of the baby boom generation. The doubling of the senior
population by 2040 is expected to further intensify demand for services.
CBO defines "long-term care" as

the personal assistance that enables impaired people to perform daily
routines such as eating, bathing, and dressing. Such services may be
provided at home by family and friends; through home- and
community-based services such as home health care, personal care, and
adult day care; or in institutional settings.[^698]

With the exception of room and board covered by Medicaid for individuals
who qualify for skilled nursing facilities, the CBO analysis does not
explore, within the context of LTC, alternative less restrictive places
to live and public and private financing options. Within the definition
of LTSS adopted by CBO, the report explains that most costs are provided
through personal resources. Most seniors with a need for assistance with
at least four aspects of daily life rely on informal caregiving.[^699]
Donated caregiving is most common among lower-income groups and among
seniors who live close to people willing to provide it, such as family
members. CBO estimates that replacing the donated costs with
professional care would cost between \$50 billion and \$103 billion in
2004 dollars.[^700]

The CBO report acknowledges that, in general, people who are younger
than 65 use LTC for different reasons than do people who are over 65.
Seniors in need of LTSS generally are adversely affected by physical
problems such as arthritis and heart disease. Younger individuals with
disabilities are more likely to be affected by mental retardation and
mental illness.[^701] Medicaid is by far the biggest funder of LTSS for
individuals under the age of 65, and the program spending for this group
continues to grow significantly with the shift from institutional care
to HCBS.[^702]

The CBO report sets out three options to respond to growing demand for
LTSS. The first set of proposals would tighten eligibility for Medicaid
and limit Medicare's home health benefits. The second set of proposals
explores the relationship between LTC insurance and public coverage
under Medicaid. It seeks to alter the incentives that encourage people
to spend down assets to become financially eligible for Medicaid for
private LTC insurance. The third set of options would expand public
programs that finance LTSS.

1\. Restrict growth in LTC spending by Medicaid and Medicare. The
rationale for this suggestion is that, by placing new restrictions on
eligibility and benefits, individuals with disabilities and families
would turn to private market solutions that would be developed to
respond to the need.[^703] One approach would be to tighten existing
limits on income and assets that would delay some applicants' entry into
the Medicaid program and discourage others from applying at all. Such a
proposal would probably most adversely affect individuals with
disabilities under age 65. These individuals are the least likely
candidates for any market-driven product of LTC insurance, because their
need for services and supports is more intense and costly. As a group,
they are the least likely to be able to afford premiums that would be
risk-adjusted and most likely be at the higher end.

2\. Improve the functioning of the market for private LTC insurance.
This second proposal seeks to improve the relationship between Medicaid
coverage and coverage under private insurance policies. The first part
of the proposal is to standardize LTC policies.[^704] Such an approach
would make it easier for companies to compare premiums for uniform sets
of benefits. It might lead to more competition among insurers and
possibly drive prices down. A standard benefits package that conforms to
government standards might also help prevent insurers from tailoring
policies to appeal only to healthier purchasers or those with less
intense needs. CBO's analysis of this approach suggests that
standardization of benefits may block the objective it was meant to
achieve.[^705] A required minimum set of benefits and consumer
protections might be so comprehensive that insurers would have to charge
higher premiums, with the result that consumer interest would decline.
An additional disadvantage discussed is that standardization could
prevent insurers from offering a variety of products to meet the needs
of a very diverse consumer audience. A second part of this proposal
would allow consumers to supplement Medicaid coverage with private
policies. Current rules do not allow enrollees to hold supplemental
private insurance. Applicants for Medicaid must exhaust all other
sources of LTC financing, including benefits offered by private
insurance. Allowing Medicaid beneficiaries to supplement coverage with
private insurance would conserve public resources.

The Long-Term Care Insurance Partnership Program that began as a
four-state model, and will be expanding to a nationwide model in the
near future, allows people who have exhausted or used most of their
private LTC insurance benefits to qualify for Medicaid and exempt all or
some of their assets from Medicaid estate recovery requirements.[^706]
Several states are experimenting with partnership policies that allow
individuals with more modest means to purchase less expensive,
shorter-term coverage and still protect some or all of their
assets.[^707] In the partnership policy, some or all of the
policyholder's savings are allowed to be designated as uncountable
assets for determining current and future eligibility for Medicaid. What
is unknown is whether the partnership policy approach reduces or
increases Medicaid spending. In a small study conducted in California's
partnership program, a savings of \$1.3 million was calculated for 18
individuals who used private policies versus Medicaid coverage.[^708] It
was noted that it was unclear whether the participants in this study had
transferred assets before applying to Medicaid.

CBO concludes that, without question, partnership policyholders would
generate more Medicaid expenditures, because they would be allowed to
qualify without first exhausting all assets.[^709] What is not as clear
is how Medicaid expenditures might be affected by people who would not
have purchased insurance at all. CBO questions whether people without
insurance have a diminished incentive to preserve their finances. By
exhausting their resources, they qualify for Medicaid that much
faster.[^710]

3\. Expand public programs that finance LTC. This third set of proposals
is described by CBO as the most costly and would "probably worsen the
fiscal difficulties the future demographic changes are expected to bring
if current law remains unchanged."[^711] Three approaches are offered to
expand the menu of benefits and the group of individuals who would be
eligible for the enhanced menu of LTSS. Similar to the NASHP proposal,
the Federal Government and states could raise the current limits on
assets and income so that more individuals met the program criteria for
financial eligibility. CBO suggests that such an approach is likely to
depress further the development and sale of private insurance products.
It is also likely to shift costs away from out-of-pocket spending by
individuals who, under the new criteria, would probably have had to
spend down more of their assets. A second part of this approach would be
to expand benefits under Medicare. Suggested expanded benefits include
home health services and respite care to promote and support informal
caregiving.[^712] CBO again points out that any expansion of benefits
will reduce consumer interest in private insurance products. A third
option suggested by CBO for consideration is to look at several types of
tax credits as an alternative to expanded direct public funding. CBO
proposes a tax credit to taxpayers who are "functionally impaired or who
have a functionally impaired dependent."[^713] A tax credit as an
alternative to a defined program benefit offers beneficiaries a greater
degree of choice and control about the type of services to be purchased
and the providers to be selected. CBO does not offer more details on the
amount of the tax credit or whether it would be available to individuals
and families below a certain income level.

The CBO report offers a set of options that recognize demand for
services and their resultant costs. The proposals have not been analyzed
in terms of specific projected costs to implement or the comparative
costs of selecting one of the three approaches over another. The CBO
report does raise important concerns about the relationships among
out-of-pocket spending, informal caregiving, private insurance coverage,
and federal spending by Medicaid and Medicare. Decisions about changes
in financial eligibility will have an impact on the development, design,
and utilization of private insurance products. CBO urges more study of
how partnership products, which seek to balance individual and public
spending, could respond to growing needs for LTSS for individuals with
disabilities. Without more federal involvement to require private
policies to conform to particular design standards, it is an unlikely
option for individuals with disabilities with diverse needs.

The following table summarizes the CBO recommendations.

Table 3.4. Congressional Budget Office

Report/Recommendation: "Financing Long-Term Care for the Elderly," 2004.

+-------+--------+---------+--------+---------+----------+----------+
| **    | **E    | **B     | **     | **Fina  | **Str    | **Weak   |
| Scope | ligibi | enefits | System | ncing** | engths** | nesses** |
| of    | lity** | Cov     | De     |         |          |          |
| Appro |        | erage** | sign** |         |          |          |
| ach** |        |         |        |         |          |          |
+-------+--------+---------+--------+---------+----------+----------+
| CBO   | Re     | I       | CBO    | C       | CBO      | Narrow   |
| o     | strict | ncrease | ex     | onsider | raises   | focus of |
| ffers | growth | gov     | plores | a       | i        | analysis |
| three | in     | ernment | ways   | variety | mportant | on       |
| p     | longe  | invo    | of     | of tax  | concerns | e        |
| olicy | r-term | lvement | c      | credits | about    | xpansion |
| op    | care   | with    | omplem | as an   | the      | or       |
| tions | sp     | the     | enting | alte    | rela     | r        |
| with  | ending | private | public | rnative | tionship | eduction |
| an    | by     | lo      | pr     | to      | between  | of       |
| ana   | Me     | ng-term | ograms | e       | out-o    | coverage |
| lysis | dicare | care    | with   | xpanded | f-pocket | through  |
| of    | and    | (LTC)   | p      | direct  | s        | Medicaid |
| each  | Me     | in      | rivate | public  | pending, | and      |
| appr  | dicaid | surance | LTC    | funding | private  | M        |
| oach. | by     | market  | ins    | to      | i        | edicare. |
| CBO   | p      | by      | urance | re      | nsurance |          |
| does  | lacing | re      | w      | imburse | c        | Need for |
| not   | new    | quiring | ithout | indi    | overage, | further  |
| reco  | restri | a       | losing | viduals | and      | research |
| mmend | ctions | s       | public | and     | public   | on cost  |
| one   | on     | tandard | eligib | f       | spending | and      |
| o     | eligi  | b       | ility. | amilies | on LTSS. | benefits |
| ption | bility | enefits |        | for the |          | of       |
| over  | by     | package |        | expense | CBO      | linking  |
| ano   | tigh   | that    |        | of      | urges    | i        |
| ther. | tening | must be |        | LTSS.   | more     | nsurance |
|       | income | made    |        |         | research | product  |
|       | and    | ava     |        | Allow   | about    | coverage |
|       | asset  | ilable. |        | co      | the      | with     |
|       | l      |         |        | nsumers | costs    | Medicaid |
|       | imits. | Allow   |        | to use  | and      | elig     |
|       |        | co      |        | private | benefits | ibility. |
|       | Expand | nsumers |        | in      | of the   |          |
|       | eligi  | to      |        | surance | rela     |          |
|       | bility | sup     |        | to help | tionship |          |
|       | to     | plement |        | reduce  | between  |          |
|       | p      | M       |        | public  | i        |          |
|       | rovide | edicaid |        | costs.  | nsurance |          |
|       | an     | c       |        |         | products |          |
|       | ex     | overage |        |         | and      |          |
|       | panded | with    |        |         | publicly |          |
|       | menu   | private |        |         | financed |          |
|       | of     | in      |        |         | b        |          |
|       | lon    | surance |        |         | enefits. |          |
|       | g-term | po      |        |         |          |          |
|       | se     | licies. |        |         | Use of   |          |
|       | rvices |         |        |         | tax      |          |
|       | and    | Expand  |        |         | credits  |          |
|       | su     | b       |        |         | to help  |          |
|       | pports | enefits |        |         | support  |          |
|       | (      | c       |        |         | the      |          |
|       | LTSS). | overage |        |         | expense  |          |
|       |        | under   |        |         | of       |          |
|       |        | Me      |        |         | family   |          |
|       |        | dicare, |        |         | car      |          |
|       |        | in      |        |         | egiving. |          |
|       |        | cluding |        |         |          |          |
|       |        | c       |        |         |          |          |
|       |        | overage |        |         |          |          |
|       |        | of      |        |         |          |          |
|       |        | respite |        |         |          |          |
|       |        | care,   |        |         |          |          |
|       |        | to      |        |         |          |          |
|       |        | promote |        |         |          |          |
|       |        | and     |        |         |          |          |
|       |        | support |        |         |          |          |
|       |        | i       |        |         |          |          |
|       |        | nformal |        |         |          |          |
|       |        | care    |        |         |          |          |
|       |        | giving. |        |         |          |          |
+-------+--------+---------+--------+---------+----------+----------+

### Americans Disabled for Attendant Programs Today

ADAPT has a history of organizing the disability community using civil
disobedience and similar nonviolent direct action to achieve its goals.
The organization was founded by individuals with disabilities in Denver
as American Disabled for Accessible Public Transit and began its first
national campaign in the 1980s, to improve access to public transit for
people with disabilities. ADAPT members nationwide began to organize in
1990 for the reallocation of 25 percent of federal and state Medicaid
dollars from institutional programs to consumer-controlled HCBS and
supports. The reaction of ADAPT members to HCBS waivers has been one of
disappointment. Inconsistent coverage from state to state, both in terms
of limited eligibility and benefits coverage, has left too many
individuals with disabilities and their families with few choices
outside of nursing homes and other large institutions.[^714] As a
possible solution to the institutional bias of Medicaid, ADAPT developed
a legislative proposal designed to encourage states to provide more
HCBS. First introduced in the 105th Congress in 1997, two similar
legislative proposals stalled in the House Subcommittee on Health and
Environment and the Senate Finance Committee.[^715] In the 106th
Congress, and each subsequent legislative session through 2004, related
versions of the ADAPT proposal have been introduced but have not secured
sufficient support for passage.

The ADAPT policy recommendations focuses on three core areas for
improvement of the Medicaid program. They focus on eligibility, access
to benefits that are consumer directed, and financing strategies to
encourage states to rebalance their services and supports away from
institutions to home and community settings. The Medicaid Community
Attendant Services and Supports Act (MiCASSA) does not propose the
creation of a new entitlement. However, it does propose to offer states
more flexibility in the use of federal funds to establish a national
program of community-based attendant services and supports for people
with disabilities, regardless of age or type of disability. In the
version of the proposal introduced in the 108th Congress in 2003,
congressional findings indicated that the goals of the Nation properly
include providing families of children with disabilities, working age
adults with disabilities, and older Americans with

a\. a meaningful choice of long-term services and supports in the most
integrated setting appropriate to their needs;

b\. the greatest possible control over the services received and,
therefore, their own lives and futures; and

c\. quality services that maximize independence in the home and
community, including in the workplace.[^716]

To achieve these goals, the ADAPT legislative proposal would establish a
mandatory Medicaid plan benefit for coverage of community-based services
and supports to be transitioned over a four-year period.

1\. Expand coverage of LTSS. Rather than a plan option or an inclusion
as a benefit under an HCBS waiver, the ADAPT proposal would require all
states who choose to participate in the Medicaid program to include a
new set of benefits for community-based attendant services and supports.
Services and supports in the benefit would cover assistance with tasks
necessary to assist an individual in accomplishing ADLs and IADLs; and
the acquisition, maintenance, and enhancement of skills required to
accomplish ADLs and health-related functions. Support includes hands-on
assistance; supervising and/or cueing; and help to learn, keep, and
enhance skills to accomplish such activities.[^717] ADLs include eating,
toileting, grooming, dressing, bathing, and transferring. IADLs include
meal planning and preparation, managing finances, shopping, household
chores, phoning, and participating in the community.[^718] Services must
be provided in the most integrated setting appropriate to the needs of
the individual based on an individual plan.[^719]

Not included under the benefit are the provision of room and board for
the individual, special education, and related services provided under
the Individuals with Disabilities Education Act; vocational
rehabilitation services provided under the Rehabilitation Act, assistive
technology devices and services, durable medical equipment, and home
modifications.[^720] The list of excluded services and benefits is an
attempt to not duplicate coverage available through some other federal
program authority, such as special education, vocational rehabilitation,
or an HCBS waiver. It does not attempt to offer new resource support for
affordable and accessible housing, even though Medicaid continues to
cover room and board only in nursing home settings.

For a state plan amendment with the new mandatory community-based
services and supports benefit to be approved, a state must establish an
extensive quality assurance program to maximize consumer independence
and consumer control in both agency-provided and other delivery
models.[^721]

2\. Adopt current standards of eligibility for community-based services
and supports. Eligibility for the new benefit would include any
individual who (1) is eligible for medical assistance under the state
plan, (2) is determined to need the level of care provided in a nursing
facility or an intermediate care facility for the mentally retarded, and
(3) chooses to receive these services and supports in a community
setting.[^722] Financial eligibility would be the same as currently
required for nursing home eligibility---up to 300 percent of the SSI
level. States would have the option to adopt a higher threshold.

3\. Offer states financial assistance to rebalance their systems. The
ADAPT proposal offers states enhanced federal matching assistance for
those who move ahead with the redesign and rebalancing of their systems.
The proposal also offers states additional reimbursement for the
provision of community-based services and supports to an individual for
whom costs exceeds 150 percent of the average cost of providing nursing
facility services but who chooses to receive assistance at home or in
community settings.[^723]

The ADAPT proposal attempts to provide the consumer of LTSS with more
options and choices outside nursing facilities and institutions. It
offers states additional federal financial assistance to rebalance the
service delivery system away from an institutional bias. As a mandatory
benefit in a state's Medicaid plan, policymakers may have significant
concerns about the number of individuals who would seek to apply for the
community-based benefits and add costs to the Federal Government and
states. The ADAPT proposal does not include cost projections.

The proposal offers no additional policy options to respond to the
growing demand for affordable and accessible housing. The ADAPT proposal
continues to influence policy debates as to possible approaches for
federal financial assistance to follow an individual involved in nursing
home traction. The possible strategy of different levels of federal
financial participation for support of states that try to rebalance
their systems deserves further research on cost and utility.

The following table summarizes the ADAPT recommendations.

Table 3.5. Americans Disabled for Attendant Programs Today

Report/Recommendation: "2003 Legislative Proposal---Medicaid Community
Attendant Services and Supports Act," 2003.

+------+---------+--------+---------+---------+----------+----------+
| **S  | *       | **Be   | *       | **Fina  | **Str    | **Weak   |
| cope | *Eligib | nefits | *System | ncing** | engths** | nesses** |
| of   | ility** | Cove   | D       |         |          |          |
| Ap   |         | rage** | esign** |         |          |          |
| proa |         |        |         |         |          |          |
| ch** |         |        |         |         |          |          |
+------+---------+--------+---------+---------+----------+----------+
| F    | Similar | Be     | Rather  | States  | Adding a | A        |
| ocus | elig    | nefits | than a  | are     | m        | mandated |
| on   | ibility | are    | state   | offered | andatory | service  |
| cha  | requi   | ex     | plan    | e       | benefit  | meets    |
| nges | rements | panded | option  | nhanced | will     | great    |
| to   | as      | to     | or an   | fi      | provide  | re       |
| Medi | cu      | cover  | in      | nancial | the      | sistance |
| caid | rrently | assi   | clusion | m       | eligible | from     |
| to   | exist   | stance | as a    | atching | po       | f        |
| ex   | for     | with   | benefit | ass     | pulation | ederally |
| pand | Me      | the    | under   | istance | access   | focused  |
| cove | dicaid, | ac     | an HCBS | to move | to       | budget   |
| rage | in      | tivity | waiver, | ahead   | needed   | analysts |
| of   | cluding | of     | the     | with    | services | and      |
| h    | fi      | daily  | ADAPT   | system  | not tied | state    |
| ome- | nancial | living | p       | design  | to an    | gov      |
| and  | elig    | or     | roposal | and     | insti    | ernments |
| com  | ibility | instru | would   | rebal   | tutional | who are  |
| muni | and     | mental | es      | ancing. | model in | cost     |
| ty-b | ind     | acti   | tablish |         | all      | -sharing |
| ased | ividual | vities | a new   | States  | states.  | partners |
| serv | determ  | of     | ma      | are     | The      | in the   |
| ices | ination | daily  | ndatory | offered | choice   | Medicaid |
| (HC  | of need | living | plan    | add     | of       | program. |
| BS). | for a   | inc    | requ    | itional | parti    |          |
|      | level   | luding | irement | fi      | cipation | There is |
|      | of care | meal   | for all | nancial | is not   | no       |
|      | p       | pl     | states  | ass     | left to  | consi    |
|      | rovided | anning | that    | istance | the      | deration |
|      | in a    | and    | choose  | for     | di       | of       |
|      | nursing | prepar | to      | indi    | scretion | supports |
|      | f       | ation, | part    | viduals | of the   | from     |
|      | acility | ma     | icipate | who     | states   | other    |
|      | or an   | naging | in the  | part    | if they  | federal  |
|      | Inter   | fin    | M       | icipate | want to  | auth     |
|      | mediate | ances, | edicaid | and for | continue | orities, |
|      | Care    | sho    | p       | whom    | to       | such as  |
|      | F       | pping, | rogram. | costs   | par      | housing  |
|      | acility | hou    |         | exceed  | ticipate | and      |
|      | for the | sehold | A state | 50      | in the   | transpo  |
|      | M       | c      | must    | percent | Medicaid | rtation, |
|      | entally | hores, | es      | of the  | program. | which    |
|      | Re      | and    | tablish | average |          | are part |
|      | tarded. | com    | an      | costs   | F        | of a     |
|      |         | munity | ex      | of      | inancial | larger   |
|      | The     | pa     | tensive | pr      | in       | f        |
|      | change  | rticip | quality | oviding | centives | ramework |
|      | would   | ation. | as      | nursing | are      | for      |
|      | be to   |        | surance | f       | offered  | di       |
|      | honor   | Se     | program | acility | to       | scussion |
|      | ind     | rvices | to      | s       | e        | of an    |
|      | ividual | must   | m       | ervices | ncourage | expanded |
|      | pre     | be     | aximize | to an   | state    | l        |
|      | ference | pr     | c       | indi    | partic   | ong-term |
|      | to      | ovided | onsumer | vidual, | ipation. | supports |
|      | receive | in the | indep   | but who |          | and      |
|      | those   | most   | endence | prefers | C        | services |
|      | s       | inte   | and     | to      | onsumer- | system.  |
|      | ervices | grated | control | receive | directed |          |
|      | in a    | s      | in both | ass     | service  | Further  |
|      | co      | etting | a       | istance | planning | cost     |
|      | mmunity | appro  | gency-p | at home | and      | analysis |
|      | s       | priate | rovided | or in   | implem   | is       |
|      | etting. | to the | and     | co      | entation | needed   |
|      |         | needs  | other   | mmunity | is       | to fully |
|      |         | of the | d       | se      | emp      | un       |
|      |         | indiv  | elivery | ttings. | hasized. | derstand |
|      |         | idual. | models. |         |          | the      |
|      |         |        |         |         |          | impl     |
|      |         |        |         |         |          | ications |
|      |         |        |         |         |          | of       |
|      |         |        |         |         |          | implem   |
|      |         |        |         |         |          | entation |
|      |         |        |         |         |          | of the   |
|      |         |        |         |         |          | ADAPT    |
|      |         |        |         |         |          | p        |
|      |         |        |         |         |          | roposal. |
+------+---------+--------+---------+---------+----------+----------+

### American Association for Retired Persons

AARP is a national nonprofit membership organization. Its membership is
diverse, including individuals in their 50s who are working and enjoy a
comfortable standard of living as well as those over 80 who are
struggling with minimal resources. Each year AARP, with input from its
members, develops a set of policy recommendations to help improve
economic security, health and LTSS, and independent living. *The Policy
Book* for 2005 offers an analysis of the current environment,
articulates a list of principles to frame future policy development, and
offers a detailed and comprehensive set of policy recommendations to
improve access, availability, and quality of LTSS for individuals in
need, regardless of age or income.[^724]

AARP's description of the current environment recognizes that for many
Americans, advancing age means an increasing likelihood of chronic
illness and disability. However, AARP, utilizing census data, points out
that millions of younger adults and children also need LTSS. If a broad
functional definition of "disability" is used to include individuals who
need assistance with one or more ADLs or IADLs, AARP estimates that 11.5
million individuals of all ages have disabilities severe enough to
require LTSS.[^725] With the aging of the population over the next 25
years and continued improvements in health care, the class of
individuals needing services and supports will grow dramatically.[^726]
Other factors identified by AARP in the current environment included
changing consumer preference for HCBS as a first choice, dependence on
unpaid family caregiving, and limited coverage of Medicaid and Medicare
with private LTC insurance not filling the void for many individuals in
need of assistance because of high cost or adverse selection.[^727]

AARP takes a strong position on the need for comprehensive reform and
offers 11 principles that should be used to evaluate any new policy
proposals.[^728]

1\. Long-term services and supports should receive adequate public
financing through a social insurance program. Under social insurance
programs, individuals pay into the system and are subsequently entitled
to benefits when they are needed. The costs are spread across an entire
population, which is the financing mechanism for Social Security and
Medicare.

2\. Implementation of a comprehensive public LTSS system should be
phased in. Expansion of services requires development of the needed
infrastructure, including building the capacity of a workforce to
respond to long-term individual support needs.

3\. A comprehensive range of LTSS should be guaranteed to all who need
them, regardless of age or income. Uniform assessments should determine
whether a person meets eligibility criteria for the program, and what
type and level of service a person requires. The range of services
includes in-home assistance, community services, a full range of
supportive housing options, institutional care, rehabilitative services,
assistive technology, and assistance with home modifications. Consumer
choice and direction should also be key elements of assessment of need
and service delivery management.

4\. Public LTSS should give meaningful support to family and friends who
provide caregiving. Any new national program should support, not
necessarily replace, caregiving by family and friends.

5\. Private sector insurance should supplement public LTSS financing.
Any private sector approach should be subject to strong standards to
protect consumers from inadequate products or deceptive marketing
practices.

6\. Provider payments should be adequate. Reimbursement for services and
supports must be reasonable and offer appropriate incentives to deliver
quality services and to attract and retain qualified staff.

7\. Cost-containment mechanisms should be built into the comprehensive
long-term support program. Appropriate mechanisms should promote
efficiency in service delivery, tying the amount of benefits to
disability levels. However, cost containment should not reduce access to
adequate and affordable services and supports.

8\. The Federal Government and state governments are responsible for
monitoring and ensuring the delivery of quality services. To protect the
health and safety of consumers, both levels of government should swiftly
and vigorously apply sanctions when needed to enforce laws and
regulations concerning the quality of services and supports being
provided.

9\. LTSS should promote consumer independence, dignity, autonomy, and
privacy. The design and delivery of services should promote concepts of
consumer choice and direction. The framework for decision making should
recognize and support consumer choices to the maximum extent possible.

10\. The rights of consumers receiving LTSS should be protected.
Consumers receiving services should have a private right of action in
court to ensure their rights. The list of protections should include the
right to timely information concerning their care, including access to
records, the right to keep personal possessions, and the right to
express grievance without fear of reprisal.

11\. Consumers of LTSS have a right to privacy. Regardless of the
long-term service setting, consumers should have private areas for
visitation, security protections for personal property, and access to
private telephones.

In addition to these principles to help design and evaluate future
policy proposals, *The Policy Book* offers more detailed strategies for
consideration by the Federal Government and state government that are
divided into six core areas: creating a consumer-directed system,
support for family caregivers, expanding HCBS, development of
appropriate health and functional criteria, preserving access and
quality, and coordination and integration of LTSS.

1\. Creating a consumer-directed system. The underlying philosophy
presumes that consumers are the experts on their own service needs and
that meaningful choice can be introduced into all service environments.
As AARP explains it, the potential benefits of consumer direction
include cost savings, flexible and more individualized service packages,
increased consumer satisfaction with management of service provision,
and use of family caregivers, which increases the pool of available
providers.[^729] Efforts to establish or offer consumer-directed
services and supports should include guidelines and standards for care,
consumer direction, counseling to assist people in arranging for
services, flexibility in selection of providers, and choice to return to
traditional agency-directed HCBS.[^730] AARP indicates that not everyone
may be an appropriate candidate for consumer-directed services.
Screening guidelines should be developed with timely grievance and
appeal procedures for consumers dissatisfied with, or turned down for,
services.[^731]

2\. Support for family caregivers. AARP recommends that LTSS cover
respite care and adult day services that supplement caregiving by family
and friends. Five specific proposals suggested by AARP include extending
the Family and Medical Leave Act to provide paid leave and cover more
workers for longer periods, additional tax benefits to help underwrite
some percentage of costs associated with unpaid caregiving, increased
funding for the National Family Caregiver Support Program, amending the
SSI rules so that they do not reduce benefits for people living with
family members, and public education to encourage employers to take
advantage of existing tax incentives, such as flexible spending accounts
for dependent care.[^732]

AARP also suggests that federal and state policies should allow payment
to relatives and friends who provide LTSS as part of an individual plan.
However, the AARP recommendation does not respond to the concerns of
policymakers that such policies will simply shift costs from the
individual family to government and not necessarily expand supports in
response to individual needs.

3\. Expand HCBS. AARP urges the expansion of federal funding for LTSS
through multiple federal authorities, including Medicaid, the Older
Americans Act, and the Social Services Block Grant (SSBG) program.[^733]
AARP also recommends more vigorous enforcement of the Americans with
Disabilities Act, with more active oversight of state activities to
implement plans in response to the *Olmstead* decision and its community
inclusion mandate.[^734]

To expand HCBS, AARP describes multiple strategies. There is no single
policy option that can produce the comprehensive system of supports that
is currently unavailable. Budgets and policies must be designed to
eliminate institutional bias and expand access under the HCBS waivers.
Specific policy options should allow states more flexibility to set
separate eligibility criteria for nursing facility care and waiver
options.[^735] Other options to be considered include

-   enacting laws that ensure nurse delegation to home care workers of
    certain tasks that provide adequate consumer protection and
    liability protection;

-   initiating nursing home diversion programs with a comprehensive
    range of services to meet health and functional needs; and

-   supporting volunteer service credit banks for expanding access to
    LTSS. These community services should not be used as alternatives to
    public responsibility for funding adequate supports.[^736]

4\. Development of appropriate health and functional criteria. AARP
suggests that eligibility for LTSS should be based on functional needs.
Appropriate measures should recognize the diversity of the population to
assess functional needs of individuals with physical impairments,
cognitive impairments, and chronic illness.[^737] Eligibility for people
with physical disabilities would be based on difficulty in performing
two of the five basic ADLs.

5\. Preserve access and quality for people with cognitive disabilities.
AARP indicates that, despite the high prevalence of cognitive
disabilities among nursing home residents, few have access to mental
health professionals. The policy approach suggested by AARP is to
require cooperative agreements with Area Agencies on Aging and community
mental health centers to meet the needs of older people in the
community. AARP urges changes in federal requirements for all skilled
nursing facilities to include mandatory annual review of changes in the
physical and mental condition of mentally ill or mentally retarded
nursing facility residents to ensure that they receive necessary
treatment and services in the most appropriate care setting.[^738]

6\. Improve coordination and integration of services and supports.
Arranging for appropriate services is a daunting task for most
individuals and families. Services and funding are divided among
multiple agencies. An essential part of a comprehensive system is
effective case management and service coordination. Policy
recommendations include

-   establishing a single point of entry for people seeking publicly or
    privately funded services;

-   ensuring that case management is available through a community
    organization that is not a direct service provider (to avoid
    conflict of interest);

-   requesting state certification and annual continuing education for
    case managers;

-   ensuring that individual service plans are based on functional
    needs, not ability to pay; and

-   requiring the development of the plan in partnership with the
    individual and family, with an emphasis on a person-centered
    approach.[^739]

AARP recognizes that development and implementation of many of the
proposed recommendations will be costly. Medicaid and Medicare are the
two largest public programs; they account for more than 50 percent of
the cost of the current imperfect system of LTSS. Smaller public
programs that provide LTSS, such as the Older Americans Act and the SSBG
program, account for less than 2 percent of total expenditures on
long-term services.[^740]

Consistent with AARP principles for development and design of any new
proposal for policy reform, an approach to financing must have the
government and individuals sharing responsibility. Public financing must
be "progressive, broadly based, stable, and capable of growing with
enrollment."[^741] AARP supports the development of a publicly financed
social insurance program that would have individuals pay into the
program and be entitled to benefits defined in law, including a cash
payment option, when they need services. Eligibility for this
entitlement should be based on functional criteria and "take into
account cognitive, physical, and social limitations, and the need for
support, supervision, and training."[^742] Although there are no cost
projections for this policy framework, AARP explains that the most
important way to control costs associated with LTSS is to avoid
unnecessary institutionalization by providing HCBS in response to
standard individual assessments and individual plans.[^743] Other
approaches suggested to achieve cost savings include improved data
collection to evaluate services and outcomes and cost-effective
allocation of resources; global budgeting strategies for states that
combine nursing home and community services expenditures into a single
pool, which enables a state to rebalance more efficiently the use of
public dollars in community settings; and consumer self-directed budgets
to manage their own service plans.[^744]

In a separate section of *The Policy Book*, AARP documents that housing
is the single largest expenditure category for older households.[^745]
Housing figures prominently in an individual's quality of life and,
depending on the availability of services and supports, can have a major
influence on whether an individual can age in place and remain
independent. The rising housing costs and the challenges of linking
affordable and accessible housing options with needed long-term supports
requires improved coordination of multiple federal, state, and local
public agencies that have separate management responsibilities for
housing and supported services.[^746] AARP recommends that the
Department of Housing and Urban Development (HUD) establish a high-level
office or senior staff member to develop and coordinate policy on
housing and services.[^747] Similar high-priority action is needed at
CMS to identify strategies to improve coordination with HUD and link
affordable housing objectives with access to community-based LTSS.

Of the six national level organizations with policy recommendations to
review and analyze, AARP offers the broadest set of strategies to
develop a comprehensive system for all Americans who seek to remain
independent and in the community. The adoption of the social insurance
model to spread costs across the largest number of people to finance a
menu of benefits that enhance function and preserve individual freedom
and choice offers a framework for reform that requires further research
and evaluation. The recognition that there is a public and private
responsibility to share risk moves the policy discussion from the narrow
focus of Medicaid to the larger context of community and multiple
federal authorities with responsibilities for housing, social and human
services, and civil rights. The larger context for policy framework also
recognizes the need to improve coordination among those federal
authorities to develop a seamless, one-stop system that is responsive to
the consumer in need of information, access, and user-friendly service
delivery options that respect consumer preferences

The following table summarizes the AARP recommendations.

Table 3.6. American Association for Retired Persons

Report/Recommendation: The Policy Book: AARP Policies 2005.

+-------+--------+-------+--------------+-------+----------+--------+
| **    | **E    | **Ben | **System     | **F   | **Str    | **     |
| Scope | ligibi | efits | Design**     | inanc | engths** | Weakne |
| of    | lity** | Cover |              | ing** |          | sses** |
| Appro |        | age** |              |       |          |        |
| ach** |        |       |              |       |          |        |
+-------+--------+-------+--------------+-------+----------+--------+
| Com   | A      | Range | C            | P     | Offers   | Need   |
| prehe | c      | of    | omprehensive | ublic | the      | for    |
| nsive | ompreh | se    | LTSS should  | fina  | broadest | f      |
| fram  | ensive | rvice | be phased in | ncing | set of   | urther |
| ework | range  | inc   | to allow     | must  | st       | an     |
| for   | of     | ludes | development  | be    | rategies | alysis |
| p     | LTSS   | in    | of needed    | pr    | to       | of     |
| olicy | should | -home | inf          | ogres | advance  | costs  |
| r     | be     | a     | rastructure, | sive, | a        | with a |
| ecomm | guar   | ssist | including    | br    | compr    | social |
| endat | anteed | ance, | workforce    | oadly | ehensive | ins    |
| ions. | to all | comm  | development. | b     | LTSS     | urance |
|       | who    | unity | Private      | ased, | system.  | model  |
| Focus | need   | serv  | sector       | st    |          | based  |
| on    | them,  | ices, | insurance    | able, | Adoption | on     |
| i     | rega   | a     | should       | and   | of       | dif    |
| ndivi | rdless | full  | supplement   | ca    | social   | ferent |
| duals | of age | range | public LTSS  | pable | i        | assum  |
| with  | or     | of    | financing.   | of    | nsurance | ptions |
| de    | i      | suppo |              | gr    | model    | about  |
| fined | ncome. | rtive | Framework    | owing | would    | cost   |
| funct |        | ho    | for decision | with  | spread   | allo   |
| ional | U      | using | making       | e     | costs    | cation |
| needs | niform | opt   | should       | nroll | and      | with   |
| over  | asse   | ions, | recognize    | ment. | provide  | indi   |
| age   | ssment | reha  | and support  |       | cost     | vidual |
| 50.   | p      | bilit | consumer     | Esta  | -sharing | and    |
|       | rocess | ative | choices and  | blish | with a   | family |
| Build | should | serv  | direction.   | a     | large    | res    |
| a     | det    | ices, | Federal and  | pub   | pool of  | ponsib |
| s     | ermine | assi  | state        | licly | part     | ility, |
| ocial | eligi  | stive | policies     | fin   | icipants | gove   |
| insu  | bility | t     | should help  | anced | who will | rnment |
| rance | for    | echno | underwrite   | s     | need     | s      |
| pr    | the    | logy, | some         | ocial | benefits | upport |
| ogram | type   | and   | percentage   | insu  | at       | at a   |
| to    | and    | home  | of costs     | rance | d        | f      |
| s     | level  | mo    | associated   | pr    | ifferent | ederal |
| pread | of     | dific | with family  | ogram | levels   | and    |
| cost  | se     | ation | caregiving.  | that  | in the   | state  |
| for a | rvices | a     |              | would | future.  | level, |
| com   | based  | ssist | Eliminate    | have  |          | and    |
| prehe | on     | ance. | i            | all   | Rec      | po     |
| nsive | func   |       | nstitutional | wage  | ognition | ssible |
| long  | tional | LTSS  | bias of      | ea    | of need  | role   |
| -term | needs. | s     | Medicaid and | rners | for      | of     |
| ser   |        | hould | allow home-  | pay   | i        | p      |
| vices |        | pr    | and          | into  | ncreased | rivate |
| and   |        | ovide | com          | a     | funding  | insu   |
| sup   |        | meani | munity-based | s     | under    | rance. |
| ports |        | ngful | services     | ystem | other    |        |
| (     |        | su    | (HCBS)       | and   | federal  | Need   |
| LTSS) |        | pport | waivers to   | then  | auth     | to     |
| sy    |        | to    | have         | be    | orities, | d      |
| stem. |        | f     | separate     | ent   | i        | evelop |
|       |        | amily | eligibility  | itled | ncluding | addi   |
|       |        | and   | for home and | to    | HUD, the | tional |
|       |        | fr    | community    | ben   | Justice  | core   |
|       |        | iends | services.    | efits | Dep      | el     |
|       |        | who   | Improve      | de    | artment, | ements |
|       |        | pr    | coordination | fined | and the  | of     |
|       |        | ovide | among        | in    | Admini   | such   |
|       |        | c     | federal      | law,  | stration | an     |
|       |        | aregi | authorities. | incl  | on       | ap     |
|       |        | ving. | At a local   | uding | Aging,   | proach |
|       |        |       | level,       | the   | to       | and    |
|       |        |       | improve case | c     | expand   | a      |
|       |        |       | management   | hoice | other    | nalyze |
|       |        |       | and service  | to    | needed   | its    |
|       |        |       | coordination | s     | supports | impact |
|       |        |       | with a       | elf-d | and      | on     |
|       |        |       | single point | irect | o        | c      |
|       |        |       | of entry.    | a     | versight | urrent |
|       |        |       |              | se    | of civil | f      |
|       |        |       | At a federal | rvice | rights   | ederal |
|       |        |       | level,       | manag | prot     | autho  |
|       |        |       | require      | ement | ections. | rities |
|       |        |       | senior lead  | plan. |          | based  |
|       |        |       | staff at     |       | Re       | on     |
|       |        |       | Department   | To    | cognizes | eligi  |
|       |        |       | of Housing   | co    | the need | bility |
|       |        |       | and Urban    | ntrol | to       | and    |
|       |        |       | Development  | c     | improve  | be     |
|       |        |       | (HUD) and    | osts, | system   | nefits |
|       |        |       | Centers for  | elim  | coor     | cov    |
|       |        |       | Medicare and | inate | dination | erage. |
|       |        |       | Medicaid     | the   | at a     |        |
|       |        |       | Services     | ins   | federal, |        |
|       |        |       | (CMS) to     | titut | state,   |        |
|       |        |       | work         | ional | and      |        |
|       |        |       | together to  | bias  | local    |        |
|       |        |       | improve      | of    | level    |        |
|       |        |       | coordination | Medi  | through  |        |
|       |        |       | between      | caid, | shared   |        |
|       |        |       | housing and  | enco  | inf      |        |
|       |        |       | services.    | urage | ormation |        |
|       |        |       | Improve      | g     | systems, |        |
|       |        |       | federal      | lobal | one-stop |        |
|       |        |       | monitoring   | budg  | resource |        |
|       |        |       | of response  | eting | centers, |        |
|       |        |       | of states to | by    | and      |        |
|       |        |       | Olmstead     | st    | a        |        |
|       |        |       | mandate.     | ates, | greement |        |
|       |        |       |              | and   | on       |        |
|       |        |       |              | im    | as       |        |
|       |        |       |              | prove | sessment |        |
|       |        |       |              | data  | ap       |        |
|       |        |       |              | colle | proaches |        |
|       |        |       |              | ction | to       |        |
|       |        |       |              | to    | d        |        |
|       |        |       |              | eva   | etermine |        |
|       |        |       |              | luate | need to  |        |
|       |        |       |              | ser   | be       |        |
|       |        |       |              | vices | matched  |        |
|       |        |       |              | and   | with     |        |
|       |        |       |              | out   | public   |        |
|       |        |       |              | comes | and      |        |
|       |        |       |              | in    | private  |        |
|       |        |       |              | diff  | re       |        |
|       |        |       |              | erent | sources. |        |
|       |        |       |              | set   |          |        |
|       |        |       |              | tings |          |        |
|       |        |       |              | with  |          |        |
|       |        |       |              | co    |          |        |
|       |        |       |              | nsume |          |        |
|       |        |       |              | r-dir |          |        |
|       |        |       |              | ected |          |        |
|       |        |       |              | bud   |          |        |
|       |        |       |              | gets. |          |        |
+-------+--------+-------+--------------+-------+----------+--------+

## Part III Expert Panel Discussion and Recommendations

On February 24, the National Disability Institute of the NCB Development
Corporation, in concert with the National Council of State Legislatures
(NCSL), convened an Expert Panel to discuss the current state of federal
policy concerning LTSS for people with disabilities and a possible
framework for future policy recommendations. The panel members
represented diverse experience and expertise regarding consumer choice
and control; formal and informal caregiving; the support options
available under Medicaid, Medicare, and other social service funding
streams; the relationships between federal policy and state reform
efforts; aging and disability service delivery; individual budgets; and
risk management.

The panel was convened to provide advice to NCD and to produce new
knowledge and understanding of current experience with, and future need
for, affordable LTSS nationwide for Americans with disabilities of all
ages.

There were two parts to the discussion with panel members. The first
part of the discussion was reactions to research findings on the current
state of LTSS for individuals with disabilities, both above and below
the age of 65. The second part of the discussion was to provide advice
and recommendations on future policy development to establish a
comprehensive system of HCBS that enable individuals with disabilities
to have expanded choice and direction to live independently and with
dignity.

The findings from the first phase of research on current federal
experience were summarized for the panel. Key findings identified were
the fragmentation of service delivery; inconsistent policy with an
institutional bias; and variance of access to needed supports based on
age, income, type of disability, and geography. The challenges of
program coordination resulted from separate and distinct authorities
across the Federal Government having responsibility for program rules on
eligibility and scope of benefits coverage. The complexity and
fragmentation in the legislative branch also made it difficult to bring
together responsible federal authorities for oversight and produce
consensus for further policy development. In a post-*Olmstead*
environment, state budget pressure and federal discretionary grants are
significant factors accelerating state interest in reexamining
infrastructures, the budget process, consumer-directed service delivery,
cross-agency and intergenerational collaboration, and public and private
partnerships. The pace of change varies by state and perception of
progress with comprehensive reform and realignment of systems to enhance
consumer choice, and direction varies by stakeholder class. Litigation
continues in over half the states as people with disabilities challenge
the pace of change, with particular focus on realignment of resources to
support expansion of home and community choices.

The discussion by the panel of current challenges reaffirmed the scope
of issues identified in the research on current experience. The public
policy discussion of private individual accounts for younger workers has
heightened interest in, and evaluation of, who is responsible for
long-term needs and what they will cost. Beyond discussions of an
entitlement to retirement income, is there a public responsibility to
vulnerable populations for LTSS? What are the dividing lines between
public and family responsibility? The Expert Panel did agree that
current federal and state budget obligations and future projections will
intensify the need to reexamine the current approach to support of HCBS.
Demographic changes will continue to add further stress on the role of
the public system, as fewer caregivers will be available to support
unpaid caregiving within a family. Panel members described the current
system as

-   not working effectively for many individuals with disabilities and
    their families;

-   inconsistent in scope with significant variability across states;

-   dominated by an institutional bias that defines the policy
    framework;

-   fragmented;

-   impacting budgets as costs are growing with increasing demand from
    diverse stakeholders;

-   forcing individuals and families to be impoverished to be eligible
    for benefits;

-   inflexible;

-   limiting individual choices;

-   complex;

-   confusing;

-   divisive as groups compete for resources;

-   devaluing; and

-   out of balance, as waivered services and supports are optional and
    not required.

There was agreement that the current picture cannot be ignored. The
range of challenges is intergenerational, as more individuals and
families seek public assistance to remain independent with LTSS. The
lack of community options and the costs are overwhelming individuals and
families who seek alternatives to skilled nursing facilities. Changing
expectations of aging baby boomers will compel policymakers to ask new
questions:

-   Are we investing in the right things?

-   Do we understand enough about the costs of HCBS to make an economic
    argument for policy change?

-   Do we need to look beyond a budget rationale to adoption of a
    critical principle for future public policy development that
    supports living independently at any cost?

There was agreement from the panel that additional research is needed to
understand more about the full set of costs of living at home or in the
community and what cost savings, if any, are possible from nursing home
diversion. Additional questions were raised about the cost savings
achieved from family support and informal caregiving. Concern was
expressed about some states and projects that are using a
consumer-directed individual budget approach to long-term supports as a
strategy to reduce individual and systems expenditures. There was
general agreement that policy development that uses a cost-savings
rationale for expansion of LTSS must proceed with caution. More needs to
be learned about the relationship between paid and informal caregiving
and the cost benefits of consumer-directed individual budgets as the
management structure for service delivery.

Panel members cited current demonstration projects funded by CMS and the
Administration on Aging that will help policymakers and other future
stakeholders learn more about the costs and benefits of
consumer-directed service delivery. Other demonstration initiatives,
such as the ADRC and Workforce Development projects, were identified to
help key stakeholders increase their understanding about the cost
benefits of streamlined access to information and services, improved
coordination of supports and services, and workforce skill development
and retention.

The second part of the discussion followed a summary of specific state
efforts at innovation related to service delivery, financing, and
consumer choice. Participants were asked to frame a new picture that
sets out a different set of expectations for all Americans and that
recognizes disability as a natural part of human experience. The panel
members offered multiple strategies for systems change.

The majority of suggestions affirmed recommendations from one or more of
the six organizations that are reviewed and analyzed in the first part
of this chapter. The overwhelming agreement of the panel was to create a
policy framework that recognizes the important and essential federal
responsibility to contribute public resources and that sets consistent
expectations for states to establish a comprehensive system. Such a
system of supports must respond to the long-term support needs of the
target population over a life span, in the least restrictive
environment.

Recommendations from the panel focused on the essential elements of a
comprehensive system, including eligibility, benefits coverage,
infrastructure, and financing.

-   **Determine eligibility based on functional need**. The panel urged
    movement away from current medical status and disability type to a
    standardized assessment process to evaluate functional needs related
    to ADLs and IADLs.

-   **Reevaluate financial eligibility criteria.** Although not specific
    with what would be an appropriate income and asset test, the current
    threshold, which in effect requires individuals and families to
    spend all assets to be eligible for Medicaid, must be changed.

-   **Develop an expanded benefits menu that organizes service options
    from a presumption of individual preference for remaining at home
    and in community settings.** The panel, without describing benefits
    coverage in more detail, recognized that different people have
    different needs. As a result, the benefits coverage based on
    functional assessment must be flexible, individualized, and
    comprehensive. Nursing home level of care should be removed from an
    entitlement status to an option of last resort.

-   **Offer more consumer choice and direction in determining needs,
    creating a service plan, and directing and managing provider
    selection and service delivery.** The panel suggested that all
    eligible consumers have a choice to direct an individual budget as
    an alternative to traditional agency direction of services.

-   **Provide incentives to support and encourage family caregiving.**
    Consider tax incentives to help defray expenses of dependent care
    for LTSS.

-   **Reach agreement across federal authorities on key outcomes and a
    measurement system.** Shared information and data collection and
    analysis across agencies in multiple settings should help improve
    understanding of cost-effectiveness based on different service
    delivery models. Outcomes to be focused on performance are wellness,
    productivity, inclusion, and independence.

-   **Spread the cost across all wage earners over a lifetime as part of
    a social insurance financing framework.** Similar to the approach of
    Social Security and Medicare, individual needs will vary over a life
    span. However, there is a basic safety net to help with the sharing
    of costs for a comprehensive system. The panel did not develop the
    specifics of such a proposal. Further research would be needed to
    calculate individual cost scenarios and system capacity to respond.

The panel did not expect to reach an agreement in one meeting on the
details of a social insurance solution. There was a sense in the group
that, during the next five years, policymakers will struggle with
multiple options to improve the current system in response to increasing
demand. Rather than predict the range of policy options to be
considered, the panel suggested a framework to evaluate any future
proposal. The beginning framework is a set of questions, or lenses,
through which to evaluate future policy proposals.

Any new proposals to reform Medicaid and Medicare should be evaluated
from an impact perspective on low-income individuals with disabilities.
States should be able to modify asset and income lists to determine
eligibility for a menu of LTSS.

Any reform proposal must be evaluated to determine the following:

-   Does it simplify and expand eligibility?

-   Does it improve coordination, access, and choice?

-   Does it compel states to rebalance institutional and HCBS systems?

-   Does it allow states to set financial and functional criteria for
    eligibility?

-   Does it encourage families to continue informal caregiving through
    tax incentives and mandated family leave benefits?

-   Does it encourage multiple points of entry and informed decision
    making on support options?

-   Does it encourage consumer direction and offer the option of
    management of individual budgets?

-   Does it favor one group over another because of age or functions?

-   Does its approach to financing reduce eligibility or benefit
    coverage?

-   Does the approach to financing spread risk and costs across a larger
    population to help reduce individual liability and spread costs
    across multiple shareholders in an equitable way to minimize adverse
    impact on individuals because of age, disability, location, or
    income status?

## Part IV Conclusion

In a new report of the U.S. Government Accountability Office (GAO),
entitled "21st Century Challenges: Reexamining the Base of the Federal
Government," major emerging forces are identified that will require the
Federal Government to rethink its entire approach to policy design,
priorities, and management.[^748] According to David Walker, Comptroller
General of the United States, "There is a daunting long-term fiscal
outlook."[^749] Competing demands from existing federal
entitlements---Social Security, Medicaid and Medicare, and other federal
commitments to respond to the nation's global war against terrorism and
homeland security needs---present only a partial picture of expected
federal spending in the future. Government spending continues to
increase across the board as the federal role has grown in addressing a
wide range of needs.[^750] The growing imbalance between expected
federal spending and tax revenues will ultimately require the nation to
decide what level of federal benefits and spending it wants for which
segments of the American population, and how it will pay for these
benefits.

According to the GAO report, one of the significant forces that will
place new demands on government in the future is an aging and more
diverse population.[^751] An additional significant force is the rapid
pace of change in science and technology, which offers new opportunities
to maintain function and independence. However, these advances raise
their own unique vulnerabilities, risks, and privacy and equity
concerns.[^752] These and other cited trends---evolving foreign policy,
a changing economy, build-up of homeland security, growing federal
deficit, and increasing divide between rich and poor---will cause
policymakers to conclude that all the government's existing programs,
policies, and activities cannot continue as "givens."[^753] GAO
concludes that many of the government's programs were designed decades
ago to address earlier challenges informed by life expectancies, health
conditions, organizational structures, technologies, and management
models of prior eras.[^754] GAO offers policymakers and the American
people a set of questions to help address what the Federal Government
does and how it does it. Key questions include the following:

-   Is the federal role warranted?

-   Are benefits targeted to those most in need?

-   Is it affordable and sustainable over time?

-   Are policies consistent with best practice?

-   How do we measure success?

-   Are all applicable costs and benefits being considered?[^755]

The lens offered by the Expert Panel takes a very similar approach to
that of the GAO. Evaluation of current federal programs and
policies---as well as future proposals to transform the government's
role as a funder, provider, and manager of a comprehensive system of
LTSS for people with disabilities---must consider relevance and
responsiveness to changing demands and consumer preferences. The Expert
Panel and six organizations representing diverse stakeholder interests
within and outside government all agree that there is a need for a
fundamental federal presence to offer expanded financial assistance that
is adequate to support a growing population as it lives with maximum
independence and dignity at home and in community settings. There is an
equally strong concurrence of opinion that, for low-income members of
the target population and for individuals with significant disabilities,
the private markets and state and local governments will not be able to
respond to the demand and cost of LTSS without the Federal Government
playing a role as a funder.

There are differences of opinion among the analyzed groups as to the
scope of benefits, the interrelationships of existing federal
authorities, and how and to whom to allocate costs. Most promising for
future policy development is the extent of interest in increasing
consumer protection in an assessment process to determine functional
need; to develop an individualized service plan; to have a choice of
service environments and providers; and to control, if interested and
appropriate, an individual budget. All groups and the Expert Panel agree
that current Medicaid policy, with its institution bias, must end, but
they disagree about the extent of flexibility states would be allowed to
exercise to define eligibility, benefits coverage, service provider
options, and cost-sharing.

The majority of the groups and the Expert Panel express strong support
for improving access and information to the target population about
program eligibility and available public and private resources. There is
also strong support for assisting families with some tax relief to
reduce expenses of informal caregiving, and to expand respite care
options to provide further assistance to individuals and families
engaged, in some way, in meeting the support needs of individuals with
disabilities.

The combined number of recommendations for future policy development
offered totals more than 40. Although the strategies proposed would most
directly affect the Medicaid and Medicare programs and CMS, other
federal authorities that would be affected are the Administration on
Aging, Social Security Administration, and the Departments of Labor,
Treasury, and Justice. Most recommendations require additional research
that would project costs for specific program amendments. The analysis
of this body of recommendations helps underscore differences of opinion
about targeted versus more comprehensive strategies. It is apparent,
however, that the longer we wait, the more painful and difficult the
choices will become.

#   {#section-33 .unnumbered}

# APPENDIX 3.A Advisory Panel: Participants and Contributors

## Long-Term Supports and Services Expert Panel Participants February 24, 2005 Washington, DC

#### \* In attendance

\* Lisa Maria B. Alecxih, Vice President\
Center on Long Term Care\
Lewin Group\
3130 Fairview Park Drive, Suite 800\
Falls Church, VA 22042\
<Lisa.alecxih@lewin.com>*\
*703-269-5542\
703-269-5503 FAX

\* Elizabeth Clemmer, Assistant Director\
AARP Public Policy Institute\
601 E. Street, NW\
Washington, DC 20049\
<eclemmer@aarp.org>\
202-434-3840

\* Sue Christmas\
Topeka Independent Living Resource Center\
501 SW Jackson Street\
Topeka, Kansas 66603\
<schristmas@tilrc.org>\
785-233-4572

\* Jeff Crowley, Project Director/Senior Researcher\
Institute for Health Care Research and Policy\
Georgetown University\
2233 Wisconsin Avenue, NW, Suite 525\
Washington, DC 20007\
<Jsc26@georgetown.edu>\
202-687-0880

\* Steve Edelstein, Policy Specialist\
Paraprofessional Healthcare Institute\
349 East 149^th^ Street, 10^th^ Floor\
Bronx, NY 10451\
<edelstein@paraprofessional.org>\
718-402-7413

\* Jackie Golden\
2626 Wendover Road\
Parkville, MD 21234\
<jlgolden@comcast.net>\
410-262-1276\
410-882-2080 FAX

Lynn Feinberg, MSW\
Deputy Director, National Center on Caregiving\
Family Caregiver Alliance\
180 Montgomery Street, Suite 1100\
San Francisco, CA 94104\
<lfeinberg@caregiver.org>\
[www.caregiver.org](http://www.caregiver.org/)\
415-434-3388\
415-434-3508 FAX

Patrick Flood, Commissioner\
Vermont Department of Aging and Disabilities\
103 South Main Street\
Waterbury, VT 05671\
<Patrick@dad.state.vt.us>\
802-241-2400\
802-241-2325 FAX

\* Marty Ford, Director of Legal Advocacy\
The Arc and UCP Disability Policy Collaboration\
1660 L Street, NW, Suite 701\
Washington, DC 20036\
<ford@thearc.org>\
[www.thearc.org](http://www.thearc.org/)\
[www.ucp.org](http://www.ucp.org/)\
202-783-2229\
202-783-8250 FAX

Suellen Galbraith, Director Government Relations\
American Network of Community Options and Resources\
1101 King Street, Suite 380\
Alexandria, VA 22314\
<sgalbraith@ancor.org>\
703-535-7850\
703-535-7860 FAX

Linda Horton, Director of Community Relations\
AIDS Alliance\
<lhorton@aids-alliance.org>

Gail Hunt, President and CEO\
National Alliance for Caregiving\
4720 Montgomery Lane, 5^th^ Floor\
Bethesda, MD 20814\
<gailhunt@caregiving.org>\
301-718-8444

\* Allen Jensen, Director\
Work Incentives Project\
Center for Health Services Research and Policy\
George Washington University\
<ihoacj@gwumc.edu>\
202-530-2319

LaRhae Knatterud, Planning Director\
Department of Human Services\
444 Lafayette Road North\
Saint Paul, MN 55155\
<Larhae.knatterud@state.mn.us>\
651-296-2062

\* Chas Mosley\
National Association of State Directors of Developmental Disabilities\
Services (NASDDDS)**\
**113 Oronoco Street**\
**Alexandria, VA 22314**\
**<cmoseley@nasdds.org>\
703-683-4202**\
**703-683-8773 or 703-684-1395 FAX

\* Brenda Premo, Director\
Center for Disability Issues and Health Care Professions\
Western University of Health Sciences\
309 E. Second Street/College Plaza\
Pomona, CA 91766\
<bpremo@westernu.edu>\
909-469-5385

Debra Stone\
P.O. Box 367\
Goshen, NH 03752\
<Deborah.stone@dartmouth.edu>\
603-863-5653\
603-863-8114 FAX

\* Eileen Sweeney, Senior Fellow\
Center on Budget and Policy Priorities\
820 First Street, NE, Suite 510\
Washington, DC 20002\
<Sweeney@cbpp.org>\
202-408-1080\
202-408-1056 FAX

Hollis Turnham, Michigan Policy Director\
Paraprofessional Healthcare Institute\
5013 Applewood Drive\
Lansing, MI 48917\
<hollis@paraprofessional.org>\
[www.paraprofessional.org](http://www.paraprofessional.org/)\
[www.directcareclearinghouse.org](http://www.directcareclearinghouse.org/)\
517-327-0331\
260-846-5347 FAX

\* Tony Young, Executive Director\
NISH\
8401 Old Courthouse Road\
Vienna, Virginia 22182\
<tyoung@nish.org>\
571-226-4660\
703-849-8916 FAX\
<info@nish.org>

## Project Staff

> Michael Morris, Director\
> National Disability Institute\
> NCB Development Corporation\
> 1725 Eye Street, NW, Suite 60\
> Washington, DC 20006\
> and
>
> Associate Director\
> Law, Health Policy & Disability Center\
> University of Iowa College of Law\
> <mmorris@ncbdc.org>\
> 202-521-2930\
> 202-218-7297 FAX
>
> Johnette Hartnett, Vice President\
> NCB Development Corporation\
> National Disability Institute\
> 1725 Eye Street, NW, Suite 600\
> Washington, DC 20006\
> and\
> Law, Health Policy, & Disability Center\
> University of Iowa College of Law\
> <jhartnett@ncbdc.org>\
> 202-218-7284\
> 202-218-7297 FAX
>
> Donna Folkemer, Program Manager\
> National Conference of State Legislatures\
> 444 North Capitol Street, NW, Suite 515\
> Washington, DC 20001\
> <donna.folkemer@ncsl.org>\
> 202-624-5400

## National Council on Disability

> Martin Gould, Director of Research and Technology\
> National Council on Disability\
> 1331 F Street, NW, Suite 850\
> Washington, DC 20004\
> <mgould@ncd.gov>\
> 202-272-2004\
> 202-272-2022 FAX
>
> Jeff Rosen, General Counsel/Director of Policy\
> National Council on Disability\
> 1331 F Street, NW, Suite 850\
> Washington, DC 20004\
> <jrosen@ncd.gov>\
> 202-272-2124\
> 202-272-2022 FAX

# 

# Chapter 4

# Moving Forward: Selected State Strategies for 21st Century Long-Term Services and Supports: Financing and Systems Reform for Americans with Disabilities 

##   {#section-35 .unnumbered}

## Table of Contents: Chapter 4

**Page**

**Part I\
Introduction** 343

**Part II\
Five State Case Studies** 348

**Part III\
Conclusion** 429

**Appendix 4.A** 433

##   {#section-36 .unnumbered}

## Part I Introduction

The current picture of long-term services and supports (LTSS) documented
by families, policymakers, researchers, and service providers is
complex, confusing, and frustrating. It is a ship struggling with the
weight of escalating costs and an increasing number of passengers
seeking access and safe passage. Services and supports are scattered
throughout numerous federal programs, with uncertain points of entry and
different rules of eligibility defined by geography, income level, age,
and nature and type of disability.

There is no comprehensive national policy focused on LTSS that is free
from the medical model and institutional bias of long-term care (LTC).
However, at the state and local levels, there is a push to move forward:
setting new policies, reallocating resources, testing new service
delivery approaches, and engaging individuals with disabilities and
families in a public dialogue to redesign the ship to support a
consumer-responsive system that encourages choices, seeks flexibility in
service delivery, invests in public-private collaboration, and values
the role of formal and informal caregivers. None of the highlighted
activities can offer a comprehensive roadmap to reform of existing
systems. However, each highlighted state or local system focuses a
spotlight on innovative thinking, including policies, processes, and
methods of administration to help guide the redesign efforts for the
future.

This chapter identifies and highlights selected activities at the state
and local levels that are leading toward increased access to LTSS with
federal and state dollars. A growing number of states are reevaluating
their current systems to identify a range of options for consumers to
remain in their own homes or communities rather than be forced into more
restrictive environments and skilled nursing facilities. Researchers
selected five states to profile and analyzed current activities that are
in different stages of development toward the goal of comprehensive,
person-centered service and support programs.

### Five State Study

The barriers that the selected states had to overcome to achieve
preferred and valued results suggest opportunities for the Federal
Government to reform LTSS at the national level. Indeed, many of the
innovations implemented by the five states have been made possible by
recent federal policies and programs that have recognized the hurdles
states have to overcome to help people with disabilities lead
meaningful, independent lives. The New Freedom Initiative has provided
states with grants to achieve the following:

-   assist individuals to move out of nursing homes into community
    settings;

-   create regional information and assistance centers that serve as
    one-stop shopping for consumers to meet their needs for services and
    supports;

-   adopt and improve consumer-directed features in their home care
    programs and train consumers on their use; and

-   form community partnerships to develop accessible and affordable
    housing and transportation for people with disabilities.

While many of these grants have been modest in amounts, they have helped
to keep the momentum going in states faced with tight budgets. The five
states selected are using these grants and adopting a variety of
strategies to achieve their goals for rebalancing their LTSS systems.
They are at different stages in this process. At one extreme is
Washington, which has taken a step-by-step approach over more than 20
years to expand home- and community-based services (HCBS). At a
different point in the spectrum is Texas, which has only recently
embarked on a major overhaul of state agencies that administer LTSS,
while also continuing a large-scale effort to move thousands of people
out of nursing homes into community living.

The five states were selected because of several characteristics
identified as common to the states and instrumental to their expansion
of HCBS. These characteristics include a strategic planning process,
systems reorganization, involvement of consumers in shaping new policy,
and interagency collaboration. These five states were chosen to reflect
geographic diversity and unique program design and development.

The mandate for planning has generally come from the governor or the
legislature. These states have also developed consensus about the
direction to take their programs through involvement of key stakeholders
from all parts of the community, including advocates, providers, and
policymakers. Most of the selected states have a tradition of discussion
and collaboration over public policy issues.

Pulling together state agencies that have responsibilities for LTSS has
been a starting point (or at least a necessary element) for making
services more accessible to consumers and responsive to their needs in
the states under review. States that place the responsibility for both
nursing homes and home- and community-based care under the same state
agency provide greater flexibility for that agency to allocate funds
based on the needs of its clients rather than having separate silos for
those funds.

Each state has developed some unique programs or approaches to serving
people with disabilities. **Washington** was one of the first states in
the country (in 1983) to take advantage of the then-new federal Medicaid
HCBS initiative, the HCBS waiver program.[^756] **Vermont** is
pioneering a global budgeting approach to providing services that will
pool nursing home and HCBS funds to allow people with disabilities to
select whichever option they prefer. The state will establish priorities
for meeting the needs of people with disabilities by dividing these
people into those with the highest needs (who are the state's first
priority) and those with less high or moderate needs.

**Minnesota** has embarked on an ambitious project to review and
prioritize public and private financing options for LTSS so the state
can develop a campaign to ensure an optimal combination of the two. The
goal is to help address the critical public financial situation that
could develop when baby boomers age and need services and supports.
**Texas** has broken new ground with a Medicaid managed care system that
is serving more than 60,000 aged and disabled people in one area of the
state. The state is also revamping its agency structure to provide
consumers with easier access to services. The effort, which could take
three to fives years to complete, involves 12 agencies, 200 programs,
and about 50,000 state employees. **Indiana** has a state-funded home-
and community-based care program that is so highly valued by consumers
and public policymakers that the program has received ever-rising
appropriations, even though the state has been facing difficult fiscal
times.[^757]

Each state case study is divided into sections that discuss programs and
services for different groups of people with disabilities. Additional
sections outline residential options and consumer-directed initiatives.
A final section singles out two particularly innovative projects in each
state.

Taken together, these five state case studies offer an optimistic and
encouraging picture of the possibilities for reforms in LTSS. They
suggest additional steps that can be taken at the federal level to
continue to help states move forward in the evolution of a comprehensive
system of support for individuals with disabilities that favors consumer
choice and control.

The following table offers a summary of each state's reform strategies
and its significance to future policy development.

Table 4.1. Five States: Long-Term Services and Supports Reform
Strategies

+--------------+---------------------------+---------------------------+
| **State**    | **Reform Strategies**     | **Importance**            |
+==============+===========================+===========================+
| Indiana      | Public-Private Long Term  | Tax deduction for cost of |
|              | Care (LTC) Insurance      | premium. For every dollar |
|              | Program---links purchase  | of benefits that a policy |
|              | of private LTC insurance  | pays out, the purchaser   |
|              | with Medicaid coverage of | earns \$1 of asset        |
|              | long-term services and    | protection to remain      |
|              | supports (LTSS).          | eligible for Medicaid.    |
|              |                           |                           |
|              | State-funded Community    | Targets a population not  |
|              | and Home Options to       | on Medicaid with a        |
|              | Institutional Care for    | sliding fee schedule      |
|              | the Elderly (CHOICE)      | based on income level.    |
|              | program is for low-income |                           |
|              | individuals who do not    |                           |
|              | qualify for Medicaid      |                           |
|              | and/or are waiting for    |                           |
|              | Medicaid services.        |                           |
|              | Covered services are case |                           |
|              | management, home health   |                           |
|              | supplies and services,    |                           |
|              | personal assistance       |                           |
|              | services, transportation, |                           |
|              | respite care, home        |                           |
|              | delivered meals, and      |                           |
|              | adaptive aids and         |                           |
|              | devices.                  |                           |
|              |                           |                           |
|              | The program is            |                           |
|              | administered by the Area  |                           |
|              | Agencies on Aging. Twenty |                           |
|              | percent of service        |                           |
|              | dollars must be used by   |                           |
|              | people with disabilities  |                           |
|              | under the age of 60.      |                           |
+--------------+---------------------------+---------------------------+
| Vermont      | Coordination of LTSS for  | Single agency improved    |
|              | people who are aging      | information flow to       |
|              | and/or disabled.          | consumers.                |
|              |                           |                           |
|              | One department includes   | Removes institutional     |
|              | Aging, Physical           | bias and offers eligible  |
|              | Disabilities, and         | people community choice   |
|              | Developmental             | and expanded service      |
|              | Disabilities.             | options.                  |
|              |                           |                           |
|              | A global budgeting        | Increased consumer        |
|              | approach allows the state | satisfaction and cost     |
|              | to combine Medicaid home- | savings.                  |
|              | and community-based       |                           |
|              | services (HCBS) waiver    |                           |
|              | funds with the state's    |                           |
|              | nursing home              |                           |
|              | appropriation.            |                           |
+--------------+---------------------------+---------------------------+
| Washington   | Balanced global funding   | Improved coordination in  |
|              | of institutional services | the delivery of services  |
|              | and LTSS with             | with a client-centered    |
|              | consolidated              | integrated service plan   |
|              | administration under the  | that is managed by a      |
|              | Department of Social and  | service broker.           |
|              | Human Services.           |                           |
|              |                           | State investment in       |
|              | With a focus on movement  | one-time transition       |
|              | out of nursing homes,     | costs.                    |
|              | state general revenue     |                           |
|              | funds (up to \$816) are   |                           |
|              | available to help a       |                           |
|              | person move from a        |                           |
|              | nursing home to a less    |                           |
|              | restrictive setting.      |                           |
|              | State funds are also used |                           |
|              | to pay for assistive      |                           |
|              | technology.               |                           |
+--------------+---------------------------+---------------------------+
| Minnesota    | Examination of long-term  | Seek to identify tax      |
|              | support insurance options | incentives and other      |
|              | to balance public and     | means to maximize private |
|              | private responsibility.   | resource utilization and  |
|              |                           | still achieve state       |
|              | Creation of benchmarks to | policy goals.             |
|              | assess change over time   |                           |
|              | in state system (for      | Ability to assess change  |
|              | example, a percent of     | in the state system over  |
|              | long-term care dollars    | time.                     |
|              | spent on institutional    |                           |
|              | versus community          | An approach to increase   |
|              | support).                 | wage levels and still     |
|              |                           | achieve consumer          |
|              | Shared Care is part of    | satisfaction.             |
|              | the state's Medicaid      |                           |
|              | Personal Care Assistance  |                           |
|              | Choice Program. With      |                           |
|              | Shared Care, two          |                           |
|              | consumers can share a     |                           |
|              | personal assistant, with  |                           |
|              | the cost divided between  |                           |
|              | two people. The worker    |                           |
|              | will be paid one and      |                           |
|              | one-half times the        |                           |
|              | regular rate.             |                           |
+--------------+---------------------------+---------------------------+
| Texas        | Reorganization of         | Will allow an integrated  |
|              | administration with       | application process for   |
|              | integrated eligibility    | medical, food, and other  |
|              | determination process.    | LTSS. Money Follows the   |
|              |                           | Person from a nursing     |
|              | Movement of Medicaid      | home to the community.    |
|              | funding from its nursing  |                           |
|              | home budget to its budget | More than 3,000           |
|              | for Community Care        | individuals have made the |
|              | Programs.                 | transition from nursing   |
|              |                           | home to community living  |
|              |                           | coordinated with          |
|              |                           | supports.                 |
+--------------+---------------------------+---------------------------+

## Part II Five State Case Studies

### Washington

*Washington is among the leaders among states seeking to create and
maintain a balanced long-term care system that offers real choices for
consumers among an array of settings and service options.*[^758]\
---National Academy for State Health Policy for\
the Community Living Change Collaborative,\
November 2003

#### Introduction

Like its neighbor, Oregon, Washington began its efforts to limit
institutionalization and expand HCBS for people with disabilities in the
1980s, long before most other states. Washington was one of the first
states to take advantage of what was then a new federal option: Medicaid
HCBS waiver programs, which allow a state to offer people at risk of
institutionalization a chance for community care instead.

In FY 2003, Washington spent \$1.6 billion on Medicaid-funded LTSS, of
which about \$770 million (49.5 percent) was allocated to institutional
care (nursing facilities and institutions for people with mental
retardation or developmental disabilities, MR/DD). Another \$784 million
(50.5 percent) went to HCBS. This contrasts sharply with the national
average allocation, which is about 70 percent for institutional care and
30 percent for HCBS. Over half of the public expenditures for LTSS in
Washington are noninstitutional, and more than 75 percent of
participants receive community-based services rather than institutional
care.

Allowing consumers the opportunity to direct their services themselves
is another important feature of Washington's HCBS programs. The HCBS
programs strongly promote choice. Washington has also been in the
forefront of states in realizing the importance of providing assistance
to family caregivers to enable them to continue caring for family
members. The state developed its own program of family caregiver
supports before the enactment of the National Family Caregiver Support
Program.

The state has also realized the importance of developing a stable and
trained workforce of direct care workers if quality care is to be
provided to people with disabilities. The creation by voter initiative
and legislation of the Home Care Quality Authority in 2000 is unique
among states in its concept and operation.

Perhaps as important as anything else to Washington's ability to create
a comprehensive system has been its management of most services for
people with disabilities in one agency. The Department of Social and
Health Services (DSHS) serves one in five Washington residents (with
health as well as support services) and, in some of the mostly rural
counties, more than one-third of the population.[^759] Within DSHS, the
Aging and Disability Services Administration (ADSA) has responsibility
for nursing homes as well as HCBS and for people with developmental
disabilities as well as the frail elderly and other adults with
disabilities. This single-agency focus has made it possible for the
state to shift resources from institutions to community services and to
coordinate services for people with disabilities who have complex
health, mental, and long-term support needs that span several agency
programs.

#### Background

The total population of Washington was about 6 million in 2002. The
state experienced a 21 percent increase in population from 1990 to 2000,
compared with a national population increase of 13 percent. The number
of people age 65 and older in 2000 totaled 662,000, or 11.2 percent of
the total population. Between 1990 and 2000, the state saw a 15.1
percent increase in the number of elderly. From 2000 to 2025, the Census
Bureau predicts a 131 percent increase in this age group in Washington,
the sixth highest growth rate in the country.[^760]

The number of people with a disability totaled 981,007 in 2000. The
state has a relatively homogeneous population with only 3.2 percent
black, 5.5 percent Asian, and 7.5 percent Hispanic. The number of people
with incomes below the poverty level totaled 10.6 percent of the
population in 2000.[^761]

More than three-fourths of the state's residents live in urban areas. In
2003, the state had the largest budget deficit in its history: \$2.4
billion.

#### Integrating Services for People with Disabilities

Washington has been gradually evolving a strategy of integrating LTSS
for people with disabilities. In 1986, the state consolidated
administration of all long-term supports for older people and people
with disabilities into the Aging and Adult Services Administration under
the umbrella of the DSHS. The Mental Health Division (MHD) and the
Division of Developmental Disabilities (DDD) were also located within
the umbrella agency.

Kathy Leitch, assistant secretary of ADSA, says that the 1986
reorganization brought nursing homes and HCBS together under one
administration. "There was always this push," she says, "that the
nursing home entitlement got in the way of providing home- and
community-based services." The purpose of the reorganization, she adds,
"was to organize around consumers and have an array of options available
to them."

The department estimated that almost 25,000 people received services
from two or more of the following DSHS programs in 1999: mental health,
aging and adult services, alcohol and substance abuse, and developmental
disabilities. In November 2000, DSHS began developing the No Wrong Door
care coordination project to design integrated case coordination models
for people and families served by several different DSHS programs. The
project involves multidisciplinary teams made up of staff from various
DSHS programs, local community organizations, and other supports of the
person and family. A "client-centered integrated service plan" is
developed and a service broker/coordinator then manages joint planning
and coordinated delivery of services.

One example of service integration was the October 2002 the creation of
the Aging and Disability Services Administration (ADSA) in DSHS, which
combined aging programs from the former Aging and Adult Services
Administration (including nursing facilities as well as community-based
programs) with developmental disabilities programs (both residential
centers and community programs). Mental health and alcohol and substance
abuse programs remain within the Health and Rehabilitation
Administration in DSHS.

#### Expansion of Community Supports

Washington has steadily increased the number of people who receive home
and community services, while decreasing the number of nursing home
residents. State officials say they can place two people in community
services for the cost of one person in a nursing home.

In FY 1992, 19,330 people were being provided publicly funded HCBS; by
FY 2003, that number had grown to 33,729. Over the same period, the
Medicaid caseload in nursing homes had dropped from 17,353 to
12,943.[^762] About 33,000 people are now receiving community services
from the Division of Development Disabilities through Medicaid Personal
Care, Family Support Services, or Community Residential Services,
compared with 1,330 people in the state's Residential Habilitation
Centers (RHCs).[^763]

Moving people out of nursing homes whenever possible has become a major
priority for the state. Four funds are available to assist people with
their transitions to the community:

-   *Medical Institution Income Exemption Fund*. Beneficiaries who
    qualify for Medicaid nursing home care must pay all their income
    toward the cost of their care, except for a personal needs
    allowance. Under the income exemption, a new nursing facility
    resident may keep income, up to 100 percent of the federal poverty
    level, for a six-month period. Residents can use this income to
    maintain their home in the community by paying rent, mortgage,
    property tax, insurance, and/or utility payments.[^764] This means
    that a person who may have a short stay in a nursing home is less
    likely to face the prospect of losing his or her residence during
    that period.

-   *Residential Care Discharge Allowance*. This allowance provides up
    to \$816 in state general revenues to help a person move from a
    nursing home or other residential setting (such as an assisted
    living facility or adult family home) to a less restrictive setting.

-   *Civil Money Penalties.* The state uses fines paid by nursing homes
    with deficiencies to help people in such nursing homes move to
    another facility or to an alternative residential setting. The
    amount is limited to \$800 per resident but may be higher if the
    facility has been decertified or if an emergency exists in which
    residents must be relocated.

-   *Assistive Technology Fund.* State general revenues are used to pay
    for assistive and adaptive technology, as well as durable medical
    equipment; evaluations; training; or minor home modifications. The
    average request is for about \$2,000; requests for more than
    \$10,000 must be reviewed by state officials.[^765]

**Programs for individuals who are elderly and/or physically disabled:**
The major program serving older people and young adults with
disabilities is the Medicaid HCBS waiver program, the Community Options
Program Entry System (COPES). An average monthly caseload in April 2004
was 23,110 people---almost 15,000 of these people were receiving in-home
services and the remainder were in residential settings.[^766]
Expenditures for FY 2003 totaled about \$295 million. (For more detailed
information on COPES, see "Innovative Practices" below.)

Washington also operates a Medicaid Personal Care program that provides
services to people who need assistance with at least one activity of
daily living (ADL), such as dressing, bathing, or self-medication. The
average monthly caseload in April 2004 was about 11,000 people.
Expenditures totaled \$226 million in FY 2003. The state also offers
limited home care services through the state-funded Chore Program, which
provides personal care and help with household tasks. However, the
state's budget crunch in 2002 and 2003 resulted in cutbacks in this
program.

**Programs for people with developmental disabilities:** Washington has
faced a number of challenges with regard to its services for people with
developmental disabilities. For example, a 1999 study found that the DDD
was "fully serving the needs of only 62 percent of its caseload."[^767]

A 1999 lawsuit, *The Arc of Washington State v. Lyle Quasim*, charged
that the state failed to provide LTSS with reasonable promptness to
people with developmental disabilities. Another lawsuit, *Boyle v.
Braddock,* filed in December 2001, alleged that the state had failed to
make available the full range of services offered through the Community
Alternatives Program to program participants.[^768] Both cases were
combined for purposes of oral arguments before the Ninth Circuit Court
scheduled for October 2004.

The secretary of DSHS appointed a Developmental Disabilities Strategies
for the Future Stakeholder Workgroup in 1997 to help develop a plan for
the future needs of people with developmental disabilities. At its
inception, the Stakeholder Workgroup stated that choice and
self-determination should be the "foundation for restructuring services
and supports" for people with developmental disabilities. Its many
recommendations after five years of work included enhancing case
management services, increasing wages of direct care staff, and
encouraging self-directed services.[^769] Direct care workers have
received modest wage increases in recent years, although the state's
fiscal problems continue to make this a contentious issue for
policymakers. Consumer direction has been incorporated into the new
Medicaid waiver programs discussed below.

The case management recommendations, however, became part of a larger
overhaul of management practices because the workgroup's efforts were
soon followed by critical reviews of the DDD by the Centers for Medicare
and Medicaid Services (CMS) and by Washington's Joint Legislative Audit
and Review Committee. Their reports were critical of the agency's
assessment and case management processes and management controls. One
major response of the Department of Social and Health Services was to
merge DDD with the Aging and Adult Services Division. The reorganization
included mandates from the DSHS secretary for organizational,
management, and service delivery reforms for DDD.

One change seeks to address issues concerning DDD's procedures for
assessing potential applicants for its programs and then allocating
resources to its clients. The change involved replacing the agency's
single Medicaid HCBS waiver program, the Community Alternatives Program
(CAP), with four waivers, each of which is targeted toward a particular
subset of the potential client population.[^770] The 10,500 people who
were receiving services under the CAP were to be moved into the new
waiver program that was most appropriate for each person's situation.
These waivers were approved by the Federal Government in December 2003
and officially replaced the CAP waiver on April 1, 2004. The programs
and the groups they cover follow:

-   **Basic Waiver:** Individuals who live with family or in their own
    homes and have a "strong natural support system." The
    family/caregiver's ability to continue to provide care may be at
    risk but can be continued with additional services. These services
    include physical and occupational therapy, behavior management,
    emergency assistance, respite care, specialized medical equipment,
    specialized psychiatric services, supported employment, and
    transportation.

-   **Basic Plus Waiver:** Individuals who live with family or in
    another setting with assistance. They are at high risk of
    out-of-home placement. Clients are eligible for all the general
    services covered in the Basic Waiver plus skilled nursing, adult
    family home, and adult residential care services.

-   **Core Waiver:** Individuals who require residential habilitation
    services or live at home but are at immediate risk of out-of-home
    placement. Services include residential habilitation and all the
    Basic Plus services, except emergency assistance, adult family home,
    and adult residential care services.

-   **Community Protection Waiver:** Individuals who require 24-hour
    staff supervision and require therapies and/or other habilitation
    services. They live in or are moving into the community.[^771]
    Services include all Core Waiver services, except personal care,
    respite, community access, adult family home, and adult residential
    care services.

Participants in these programs can hire, train, and supervise workers
they choose, or they can elect to have agency services. Because the
number of people with developmental disabilities has increased
significantly in recent years, demand for services has been greatly
exceeding supply. The state reported that 5,000 people were on a waiting
list for the Family Support Program, with an average wait for services
of about 18 months. (Family Support helps people find and pay for
respite care, therapy, special equipment, and participation in community
activities.)[^772]

Another major issue for the agency has been the future of the state's
five RHCs that provide 24-hour residential housing for individuals with
developmental disabilities needing institutional care. At their peak in
1967, the centers had a combined population of 4,000 residents. By 2004,
that population had shrunk to 1,100 residents after the state had begun
closing some of the facilities.

**Programs for people with mental illness:** The state has made vigorous
efforts to move long-term psychiatric state hospital patients into
community settings. Those efforts have resulted in the closure of 178
psychiatric state hospital beds between December 2001 and April
2003.[^773]

The foundation of the state's mental health system is a network of local
mental health managed care plans called Regional Support Networks
(RSNs). Services include crisis services; individual or group therapy;
medication evaluation, prescription, and management; and case
management. Each RSN is allotted a specific amount of money to provide
these services to people in its area and an allotment of beds for people
who need hospitalization at state hospitals. Most RSNs also use private
psychiatric inpatient facilities closer to home.[^774]

The DSHS received a \$1.4 million federal Real Choice Systems Change
Grant in 2002 to improve services for adults and older adults with
co-occurring medical and behavioral disorders. A draft report on the
grant in March 2003 noted that only one in three adult DSHS clients with
a diagnosis in the group, including dementia and other organic
disorders, was served by the MHD in FY 2001. A high percentage of older
adults leaving state hospitals, the report said, are never seen in
community services.[^775]

In response, DSHS began an Expanding Community Services (ECS)
Initiative, which received funding in the FY 2001--2003 state budget.
The goal is to fund the development and operation of community support
services for long-term state hospital patients who are facing barriers
to discharge. Community funding is becoming available through closure of
some state hospital wards.[^776]

#### Residential Options

The residential alternatives for people with disabilities include adult
family homes that can provide care for up to six residents, and boarding
homes licensed to care for seven or more people. "Boarding homes" is a
term that covers adult residential care (ARC), assisted living, and
enhanced ARC. Services in ARC homes include lodging, meals, general
supervision of residents, and assistance with personal care. Enhanced
residential care services include the services provided through an ARC
contract and limited nursing services.

Washington has more than 2,000 adult family homes that provide room,
board, laundry, supervision as needed, and assistance with ADLs.
Boarding homes that provide assisted living services offer a private
unit with a private bathroom and help with personal care tasks that do
not require a professional worker. Some boarding homes specialize in
nursing services, while others serve individuals with mental health
problems, developmental disabilities, or dementia.

A Medically Needy Residential Waiver program pays for personal care and
other services for aged, blind, or disabled people in adult family
homes, assisted living facilities, and enhanced ARC facilities. Medicaid
funding was available for about 2,900 residents of assisted living
facilities in 2000; that number had grown to 3,762 in 2002.[^777]

In 1995, the state moved licensing and oversight responsibility for
assisted living from the Department of Health to DSHC, which also has
enforcement authority over nursing facilities. The legislature enacted a
law in 1997 to establish a consultative approach to help assisted living
providers meet state licensing requirements. The Quality Improvement
Consultation Program, as it was called, employed a staff of consultants
to advise and train assisted living providers. The nine regionally based
consultants conducted site visits, led training sessions, and responded
to telephone inquiries.[^778]

After six months of operation, about 82 percent of providers voluntarily
participated in the program. Evaluations conducted six months and two
years after the program started found a large majority of providers
expressing satisfaction with the program. Among residents assessed by
the consultants on more than one visit, 86 percent showed improvement in
various aspects of care, such as administration of medications and
assistance with ADLs.

The program fell victim to budget cutbacks in the FY 2003 budget,
however, and ended in June 2002. The U.S. General Accounting Office
(GAO) found that the number and percentage of facilities that had
incurred penalties "fell substantially" after implementation of the
program. The state imposed fewer civil fines, conditions on licenses,
license revocations, and summary suspensions.[^779]

Washington has received a four-year Coming Home grant from the Robert
Wood Johnson Foundation to help the state explore development of
affordable models of housing with services for the elderly and adults
with disabilities. Part of the grant calls for setting up focus groups
to obtain input from the disability community on current housing and new
models.[^780]

#### Workforce Issues

*Direct Care Workers:* Initiative 775 enacted by Washington voters in
2001 established the Home Care Quality Authority "to regulate and
improve the quality of in-home care services by recruiting, training,
and stabilizing the workforce of individual providers."[^781] The 2002
legislature incorporated the text of the initiative in state law. In May
2002, the governor appointed the authority's nine-member board, which
held its first meeting in June 2002.

The authority is developing a referral registry for individual home care
providers, which is to be available by July 2005, and providing training
opportunities for consumers and providers. The authority has a mandate
to recruit providers and then match consumers to qualified providers in
both routine and emergency situations.

After the passage of the initiative, the Service Employees International
Union, which represents about 26,000 home care workers in Washington,
negotiated a contract with the state that called for a \$2.07 per hour
increase and a package of state-subsidized benefits. But the money to
implement the contract required legislative approval, and the state had
hit a severe revenue shortfall.

The contract was rejected in the 2003 legislative session, although the
budget did include \$25 million to cover a \$0.75 per hour raise for
home care workers. Then, the union won legislative approval in March
2004 for a revised contract that called for a \$0.50 per hour raise as
well as new health and workers' compensation benefits. Home care workers
saw their wages rise from \$7.18 per hour in 2001 to \$8.93 in
2004.[^782]

*Family Caregivers or Informal Care:* Washington has also strengthened
its support for family caregivers over the years. The state estimates
that more than 540,000 family caregivers are helping adults who have
chronic illnesses or serious disabilities.[^783] A respite care program
established statewide in 1989 had a \$2.8 million budget in FY 2003. A
state family caregiver support program was started in October 2000, with
an annual budget of \$610,000. When the National Family Caregiver
Support Program was enacted that year, Washington was allocated about
\$2.4 million.[^784]

Washington has also devoted considerable efforts to ethnic family
caregivers. The state has used two federal Alzheimer's Disease
Demonstration Grants to target Chinese, Hispanic, Korean, and Native
American communities as well as rural communities.

#### Consumer Direction 

Washington has long been a state that promotes consumer-directed care
for participants in its home- and community-based programs. Participants
in the Medicaid Personal Care program and COPES may use workers from
home care agencies or hire independent providers However, state policy
requires clients who need more than 112 hours of service a month to use
an independent provider rather than an agency, which was intended as a
cost-containment measure and to address shortages of home care workers,
particularly in rural areas. For this reason or because of preference,
the majority of in-home clients use independent providers rather than
agencies.

In the Medicaid-funded programs, participants may hire family members
but not a spouse or parent of a client. A 1998 survey by the Aging and
Adult Services Administration found that 52 percent of independent
providers were family members. Independent providers, including family
members, must submit to criminal history background checks and complete
a state-designed training course. After hire, a worker must take a
two-hour orientation course, take 28 hours of mandatory training within
the first 120 days of hire, and take 10 hours of continuing education
each year thereafter.

In addition to hiring and supervising his or her worker, the consumer
trains the worker regarding individual needs and health-related tasks. A
case manager determines the client's eligibility for the program and the
number of hours of service the worker may provide. The client signs the
timesheets; the case manager authorizes services and payment. The state
cuts a check, which it sends directly to the worker.

The state applied in 2004 for a Robert Wood Johnson grant to implement a
Cash and Counseling project, which will allow eligible Medicaid
participants to receive a monthly allowance to be spent to hire their
own workers, including relatives. The project will also provide
counseling and financial assistance to help clients plan and manage
their responsibilities, including choosing a fiscal agent if they wish
to maintain their accounts, write checks, withhold taxes, and file tax
returns.

#### Innovative Practices

Two key innovative practices in Washington include one program that has
been the foundation of the state's successful HCBS system for almost 20
years (COPES) and one demonstration program that has only recently been
implemented (the Medicaid Integration Partnership).

***The Community Options Program Entry System (COPES):*** The heart of
the home- and community-based system in Washington is COPES, begun in
1983. It is one of the largest HCBS waiver programs in the country in
terms of number of participants, with more than one-third of the
participants age 18 to 64 years old. Not only does the program provide
assistance with personal care and household tasks in the home, COPES
also funds services in adult family homes, assisted living facilities,
and enhanced ARC facilities.

To qualify for COPES services, an individual must be at risk of nursing
home care and need assistance with two or more ADLs or be cognitively
impaired. The financial eligibility standard is 300 percent of
Supplemental Security Income (SSI). Initial functional and financial
eligibility determinations are carried out by local ADSA caseworkers
throughout the state. If a client receives services at home, an Area
Agency on Aging worker will assume case management responsibilities for
that person. If the client enters a residential facility to receive
services, the state agency caseworker will retain the case management
function.

Covered services include assistance with personal care and household
tasks, adult day care, environmental modifications, home delivered
meals, personal emergency response systems, and specialized medical
equipment and supplies. Other services include skilled nursing and home
health aide services that are beyond the amount, duration, and scope of
regular Medicaid services, as well as training and transportation to
meet therapeutic goals.

***Medicaid Integration Partnership:*** This is a demonstration program
aimed at bridging the gaps that exist for many high-risk clients of the
DSHS who are eligible for or are receiving services from different
divisions of the department. The project is aimed at individuals with
complex medical conditions, cognitive impairment, mental illness,
addiction disorders, and physical and developmental disabilities who
make heavy use of medical, hospital, or nursing home services;
prescription drug services; or mental health services. The goal is to
provide these clients with an integrated package of services "to slow
the progression of illness and functional disability, reduce unnecessary
emergency room and hospital visits, and reduce the overall cost of
care."[^785]

Agencies involved include the Office of the Secretary of DSHS, ADSA, the
Medical Assistance Administration (Medicaid), the Budget Office, and the
Research and Data Analysis Division. An intra-agency workgroup began
developing the demonstration project to be implemented during the FY
2003--05 biennium. The legislature authorized DSHS to combine and
transfer funds for Medicaid clients in this program from the separate
budget categories for the ADSA, Alcohol and Substance Abuse, Mental
Health, and Medical Assistance (Medicaid) program budgets into the
2003--05 biennium. Enrollment is expected to reach at least 4,000
people.

One of the first steps in the project was to analyze the Medicaid
population in terms of demographics, use of services, and cost and
setting of care. The workgroup has been working on coordinating
arrangements for health care, mental health, substance abuse benefits,
and LTSS. In addition to the state agencies working together, the
project envisions community partnerships made up of groups of medical,
behavioral, and long-term service providers in one or two counties.
Funding streams will be integrated into a single monthly capitated
payment for medical services, prescription drugs, LTSS, and behavioral
health.

The program must evaluate changes in cost, utilization, and client
outcomes. In January 2005, the department will prepare a Medicaid waiver
proposal that outlines further steps in Medicaid integration that the
state wishes to pursue, including fully integrating Medicare and
Medicaid funding and services.[^786]

#### Future Plans and Challenges

The pressures brought through class action lawsuits on behalf of people
with mental illness and individuals with developmental disabilities have
pushed the state to advance its community-based agenda despite severe
budget and fiscal pressures. Although the commitment to increasing
community services for people with disabilities remains strong, tensions
over budget issues have slowed some actions to improve LTSS, such as
raising wages and benefits for direct care workers or expanding
state-funded programs such as the Chore Program.

At the same time, however, the state's Medicaid agency has been looking
at enhanced rates for boarding homes that serve people with dementia,
says Bernard Dean, senior fiscal analyst of the House Appropriations
Committee. ADSA Assistant Secretary Leitch points out that some
specialized dementia care boarding homes that have been developed in the
state are at least \$50 per day cheaper than nursing homes and delay
nursing home placement. Pat Thibaudeau, the ranking member of the Senate
Health and Long-Term Care Committee, believes that the legislature also
has "to figure out a better way to fund nursing homes," pointing to a
number of nursing home closures and the potential need for some
facilities to care for baby boomers in the future.

As the agency charged with *Olmstead* planning, DSHS completed a draft
plan in December 2002, but the agency described its work as an ongoing
process. The Washington *Olmstead* plan "is intended to be a living
document, subject to continuous planning and change," the agency said.
The goals are to continue to divert people from institutional admissions
by creating sufficient options in home and community settings, and to
help people already in institutions make the transition to the
community.[^787] The state will be tested through its fiscal
difficulties to realize these goals.

The reorganization within DSHS also poses challenges for the state as
the newly created ADSA strives for cohesion and coordination among its
somewhat disparate parts.

As DSHS increasingly promotes the delivery of services through teams
from different parts of the agency, it will be learning whether
efficiencies can be achieved and the quality of care improved for all
its clients.

### Vermont 

*Vermont's long-term care system is "characterized by collaboration
among key agencies, advocates, and other stakeholders. It is built upon
the principle of maximizing participant choice of services, providers
and living arrangements."\
* ---MEDSTAT report for CMS, 2003

#### Introduction

Although a small rural state, Vermont has built an enviable record of
providing LTSS for people with disabilities that enhance their
independence and dignity and promote choice. This system has evolved
through years of planning since the 1990s and is built on a firm
commitment to the goals articulated in legislation and program
administration for providing services that reflect each individual's
needs and choices.

The key components of Vermont's programs are extensive and ongoing
planning, expanded HCBS, residential options, worker initiatives, and
self-directed services. Agencies for different populations with
disabilities have collaborated on a number of projects, and a recently
implemented reorganization plan will unite most agencies for people with
disabilities under one umbrella department.

Vermont's efforts are strengthened by the close partnership between the
state and 10 local coalitions throughout the state. These coalitions
bring together advocates and providers to collaborate on ways to improve
service design, options, and coordination in each geographic area.

Significant milestones in Vermont's planning for and development of
home- and community-based options for people with disabilities include
Act 160, which was enacted in 1996, and "Shaping the Future of Long Term
Care" reports, which have been issued since 2000. Act 160 laid the
groundwork for rebalancing the state's system of LTSS from an
institutional approach to greater emphasis on home- and community-based
options. The "Shaping the Future" reports set out goals and measure
progress toward meeting those goals for the elderly and people with
disabilities.

#### Background

Vermont had a population of about 616,600 people in 2002, forty-ninth in
the country. Encompassing only about 9,250 square miles, the state has a
population density of 65.8 people per square mile (compared with the
U.S. average of 79.6 people per square mile). The population is largely
white and nonpoor---96.8 percent white with a poverty rate of 9.4
percent (compared with the national average of 12.4 percent poor).

The state had 77,510 people age 65 and older in 2002. The number of
people age five and older with a disability totaled 97,167 in
2000.[^788] The state estimates that 3,835 people were living in the
community in 2003 who required assistance with at least two ADLs.
Forty-five percent of these individuals were low income. The state
estimates that by 2013, this number will grow to 5,464 people (a 42
percent increase).[^789]

In the 1980s, Vermont's public officials began to review the state's
LTSS, which consisted largely at that time of institutional care, Older
Americans Act services, and a small state-funded attendant care program.
A set of recommendations for expansion of community services came out of
a 1986 report to the state legislature and a 1988 commission headed by
the lieutenant governor. As a result of this work, the state developed a
Medicaid home care waiver program, and provided additional state funds
for adult day services and homemaker services.

Another outcome was the creation of the Department of Aging and
Disabilities (DAD) in 1989, which issued a 1991 report "Long Term Care
in Vermont." A major recommendation of that report was that the state
allocate for community services at least 30 percent of total public
funds for institutional and home- and community-based care.[^790]

#### Integrating Services for People with Disabilities 

Until 2004, Vermont did not integrate or coordinate LTSS for all people
with disabilities. Separate administration and program operations
existed for aged and disabled people in DAD and for developmentally
disabled and mentally ill people in the Department of Developmental and
Mental Health Services (DDMHS), although both departments were located
in the Agency of Human Services.

Significant progress has been made, however, in coordinating all
services and supports for elderly people, people with disabilities, and
people with developmental disabilities through a reorganization that has
been in the planning stages since 2002 and was implemented in 2004. The
reorganization has resulted in the creation of the Department of Aging
and Independent Living, which pulls together programs from DAD and
developmental disabilities services from DDMHS (which was abolished as
an agency). The reorganization also locates mental health services in
the Department of Health, along with programs from the Division of
Alcohol and Drug Abuse.[^791] (Throughout this report, the names of the
former agencies will be used in most cases because the services and
programs to which the report refers evolved through the years under
those agencies.)

This effort at coordination and consolidation of services came about
when the Vermont General Assembly in the FY 2003 Appropriations Act
instructed the Agency of Human Services to recommend a comprehensive
plan for reorganization of the agency's operations. For six months (July
1, 2003, to December 31, 2003), the agency consulted a wide range of
Vermont consumers, providers, state employees, and stakeholders through
surveys, focus groups, regional stakeholder meetings, regional and state
advisory groups, and a statewide conference.

The agency said that "widespread agreement" emerged that it needed "to
do a better job" in several areas, which included integrating the
state's approach to LTSS "so that consistent support and services are
available based on the need of the individual or family, rather than by
diagnosis or geographic region of the state." The system, the agency
said, "tolerated significant disparities and inequities that inhibit too
many children and adults with disabilities from receiving vital services
and supports they need to live independently in integrated community
settings."[^792]

When the legislature backed the reorganization, says Peter Youngbaer,
executive director of the Vermont Coalition on Disability Rights,
lawmakers felt that a key component had to be a "detailed financial
plan." The state's director of long-term care services, Brendan Hogan,
says that the state has experienced incremental changes in the years
since passage of Act 160. With reorganization, he says, "There is more
of an overall strategy." Completion of the reorganization is expected to
take about three years, with final implementation scheduled for
mid-2006.

Putting developmental disabilities services into a single department
with aging and physical disabilities was a "real step forward," says
Debra Leese Baker, executive director of the Vermont Independent Living
Center. Coordination is still sometimes difficult, she says, because
"mental health remains in another department."

It should be noted that, before the reorganization, the various agencies
with responsibilities for services for people with disabilities often
collaborated on various projects. For example, a 1999 Workforce Task
Force begun in DAD was later expanded to include DDMHS and DDD. DAD and
DDMHS jointly administer the ElderCare Initiative, begun in FY 2001 to
provide mental health services for older adults in their homes (see
below).

Another major collaborative activity has been the work by DAD, DDD, and
DDMHS on a series of activities funded by a \$2 million, three-year
federal grant under the Real Choice Systems Change Grant program. The
objectives for the project include the following:

-   improving and coordinating information flow to consumers to ease
    their ability to navigate service delivery systems;

-   identifying best practices to foster self-determination and
    self-advocacy among consumers;

-   supporting workforce development (discussed in greater detail below
    under "Workforce Issues");

-   developing a Medicaid waiver to eliminate a bias toward
    institutional care (see "Innovative Practices" below); and

-   researching the option and implementing a pilot program to provide
    direct funding to people with developmental disabilities and their
    families.

All three agencies are involved in the first three objectives, the
Medicaid waiver application is a project of DAD, and direct consumer
funding is a project of DDS. In May 2004, the agencies applied to CMS
for a no-cost extension that would continue the projects through autumn
2005.[^793]

#### Public/Private Partnerships

In the process of expanding its HCBS, Vermont has "achieved remarkable
consensus on policy goals," according to one study, "among state
officials, the disability community, aging advocates, service providers
and program participants themselves." Creating a state-level coalition
"consisting of all relevant stakeholders," the report said, helped the
state reach consensus on policy goals and strategies for realizing those
goals.[^794]

After the 1991 "Long-Term Care in Vermont" report, stakeholder groups
consisting of people with disabilities, the elderly, and providers
convened at the local level. These groups provided community input into
the process that led to passage of Act 160. After that, DAD used a small
amount of the 160 funds to support the transition of 10 stakeholder
groups around the state into coalitions.

The coalitions have been "widely credited with fostering collaborations
among various stakeholders and improving access to services."[^795] The
coalitions developed business plans that focused on filling local gaps
in services in the first years of their existence. The 10 LTC coalitions
operate in areas generally corresponding to county boundaries. They have
been given authority by DAD to select either an Area Agency on Aging or
a home health agency in their region to coordinate management of the
Home-Based and Enhanced Residential Care Medicaid Waiver Programs, and
they now oversee the Housing and Supportive Services Program as well.

#### Expansion of Community Supports

Act 160 laid the groundwork for a multiyear effort to limit
institutionalization of people with disabilities who need services and
supports by expanding home care and other community residential options.
Act 160 linked increased funding for HCBS to reduced growth in nursing
facility expenditures for the four years following passage of the law.
The state had estimated that spending on nursing home care would
increase 8 percent a year, the rate of growth experienced between 1983
and 1996. Act 160 provided that any savings realized by the state from
spending less on nursing homes than the projected amount could be used
to finance expanded community options.

When the legislation was enacted, 3,600 people were residents of nursing
homes; as of December 2003, the number of nursing home residents had
dropped to 3,256. In 1992, about 22 percent of Vermont's population age
85 or older lived in nursing homes. By 2002, 15 percent of that age
group were living in nursing homes.[^796]

**Programs for individuals who are elderly and/or physically disabled:**
The following are the major programs for seniors and people with
disabilities that are administered by DAD: Home-Based Medicaid Waiver
Program, Attendant Services Program (ASP), Traumatic Brain Injury
Medicaid Waiver, Enhanced Residential Care Medicaid Waiver, Adult Day
Services Program, Homemaker Program, and Housing and Supported Services.

Personal care services are provided in the Home-Based Medicaid Waiver
Program. These include assistance with essential daily activities such
as dressing, bathing, eating, grooming, toileting, mobility, and
transferring. Assistance may also be provided for other activities, such
as medication management, meal preparation, cleaning, and shopping. The
program also pays for up to 720 hours a year of respite care services
for family caregivers. The program has more than 1,300 participants

The ASP also provides assistance with the daily activities described
above, but allows for several models of consumer-directed care. A
program assessor completes an in-depth assessment of an applicant's
needs in his or her home. Then an eligibility committee (consisting of
program participants) reviews the assessment and authorizes a specific
number of hours of service per day.

The program has four different components. The state-funded
Participant-Directed or Medicaid Participant-Directed Programs are for
people who need assistance with at least two ADLs and who can manage
their own care A third ASP component is a state-funded Personal Services
Program for people who need assistance with at least one ADL or meal
preparation. The fourth ASP component is the Group-Directed Attendant
Care Program for people who need four or more hours of attendant
services daily.

The Enhanced Residential Care Waiver Program provides personal care,
case management, activities, and 24-hour staffing for people who live in
residential care homes or assisted living facilities. The program serves
about 200 people a year in 38 licensed Level III residential care homes.
(For further information on residential care homes, see "Residential
Options" below.)

The Adult Day Services Program offers personal care and meals,
therapeutic activities, and professional nursing services in adult day
settings. The Homemaker Program provides homemaker services for people
with one or more ADL deficiency and/or cognitive impairment. The Housing
and Supported Services Program provides services and coordinates access
to existing community services for residents of congregate housing. (For
further information on this program, see "Residential Options" below.)

**Programs for people with developmental disabilities:** The state has
created comprehensive community-based services for people with
developmental disabilities through the DDMHS. The services that the
state has developed have led to the following results:

-   Vermont ranks first among the states in the number of people with
    developmental disabilities per 100,000 population who receive
    supported employment.

-   The state is fourth in the nation in terms of total family support
    spending per family with a person with developmental
    disabilities.[^797]

-   Vermont has the nation's highest percentage of people with
    developmental disabilities living in residential settings of three
    or fewer residents.[^798]

-   The only public institution in Vermont for people with developmental
    disabilities, the Brandon Training School, was closed in November
    1993.

The Developmental Disabilities Act of 1996 laid out 12 principles of
service that included employment, accessibility, meaningful choice,
individualized support, and health and safety, among others. DDD has
contracts with 15 nonprofit developmental services providers: 10
Designated Agencies in each geographic region of the state and 5
Specialized Services Agencies that provide services to meet distinctive
individual needs.

In FY 2003, the agency provided supports to 2,889 people, which agency
officials say represents only 25 percent of the eligible population.
Medicaid funds 99 percent of developmental services through the Home-
and Community-Based Waiver Program that served 1,918 people in FY 2003.
Participants have choices for the management of their services:
self-direction, agency management, "shared" management between an agency
and the consumer, or family management.

A smaller state-funded program, Flexible Family Funding, provides up to
a maximum of \$1,122 annually to eligible families with children or an
adult family member who lives at home. The money can be used for
services and supports at the family's discretion. (Families receiving
Flexible Family Funding can also get services under the Medicaid waiver
program if they are eligible.)[^799]

The Federal Government has praised Vermont's program for people with
developmental disabilities for its attention to each participant's
needs. For further information on the state's approach, see "Innovative
Practices" below.

**Programs for people with mental illness:** A Medicaid waiver program
provides services for the chronically and persistently mentally ill
through a network of community mental health agencies. The FY 2003
appropriation for community-based services for adult mental health was
\$35.6 million. Programs include Community Rehabilitation and Treatment
(CRT), Adult Outpatient Services, and Emergency Services.

The CRT program, which had about 3,200 clients in FY 2003, provides
medication prescription and monitoring, and helps clients find and keep
a job and locate housing. The program also assists clients in getting an
education and provides social and recovery skills. Adult Outpatient
Services, which has served more than 7,000 people annually in recent
years, offers a range of mental health services, such as evaluation and
family, individual, and group therapy. People are typically seen for 1
to 10 visits.

Emergency services are available 24 hours a day, 365 days a year to
evaluate mental health crises and to provide or arrange whatever
treatment or support is needed to cope with the crisis. The program
serves about 7,600 people annually. Consumer/Family Initiatives services
include information, advocacy and referral, and training for providers.
Support groups and telephone emotional support are also available.[^800]

**ElderCare Initiative:** A joint program of DAD and DDMHS, the
ElderCare Initiative was started in FY 2001 with a \$250,000
appropriation. Clinicians provide outreach, case identification, and
home-based mental health treatment services for adults age 60 or older.
The most frequent diagnosis is depression, with a small percentage of
cases of substance abuse or dementia. At the local level, the program is
run by the state's five Area Agencies on Aging and 10 community mental
health centers.[^801]

#### Residential Options[^802]

The first "Shaping the Future of Long Term Care" report called for the
development of additional supportive housing, such as enhanced
residential care, assisted living, group-directed congregate housing,
and adult family care. Although state officials say that significant
progress has been made in developing new housing models, getting the
models up and running has been difficult. In some parts of Vermont,
older people have a two- to five-year wait for affordable housing.

Vermont's first licensed affordable assisted living residence opened in
July 2003. The 28 apartments were all leased or under signature within
three months of opening. Other entities are in various stages of
developing assisted living residences, with the state hoping to produce
a specific plan for future growth in 2004. (People in assisted living
facilities and residential care homes who are Medicaid-eligible can
receive Medicaid-covered services through Vermont's Assistive Community
Care Services Program.)

Residential care homes are state-licensed group living arrangements
designed to meet the needs of people who cannot live independently but
who may not need the level of care provided in nursing homes. Assistance
in residential care homes primarily includes help with daily activities
such as bathing, dressing, and eating. There are two levels of these
facilities: Level III homes provide nursing overview but not full-time
nursing care, and Level IV homes do not provide nursing overview *or*
nursing care.

Other housing options in the planning or development stage include the
following:

-   *Consumer-directed congregate living arrangements* that provide
    individual apartments and shared caregivers for a small number of
    young adults with severe mobility impairments. One nine-unit site in
    Burlington is being evaluated by the state for future planning
    replication.

-   *Adult family care*, an arrangement in which an older person or a
    young adult with a disability lives with an unrelated family that
    provides housing, personal care, and supportive services. This
    option is in the development stage in a few areas; the state hopes
    to expand the concept statewide sometime in 2005.

-   *Housing and Supportive Services (HASS)* provide service
    coordination and gap-filling supportive services to people living in
    29 congregate housing sites. The goal of HASS is to allow residents
    to age in place, thus avoiding or delaying institutional placement.
    Wellness initiatives, exercise programs, and community meals are
    provided. As of June 2003, about 800 people were participating in
    this program.

-   *Homeshare Vermont,* a program currently in only a few areas of
    Vermont, brings together a homeowner who needs support and
    assistance with a caregiver looking for a place to live. In 2003, a
    match-up program in Central Vermont opened through the collaboration
    of multiple partners in the area.

#### Workforce Issues

As with most states, Vermont has problems finding enough direct care
workers for its home care and residential programs, a situation that is
exacerbated by the sparse population in rural areas. A study by DAD
found that turnover rates ranged from 35 to 60 percent in nursing homes
and home health agencies, and up to 400 percent in residential care
homes.[^803] The state has attempted to address these shortages in
several ways:

-   Used savings in the nursing home budget in FY 2001 to increase
    payment rates for the consumer-directed option in waiver programs.
    (After a year's experience, a worker would be paid \$10 an hour, on
    average.)

-   Enacted wage pass-through[^804] legislation for nursing homes. The
    legislature appropriated \$6.3 million in FY 2001, \$8.7 million in
    FY 2002, and \$8.3 million in FY 2003.

-   Applied part of a federal Systems Change Grant to establish a
    paraprofessional organization, the Vermont Association of
    Professional Care Providers. The association will give workers an
    opportunity to help shape their training and work conditions.

Another major effort has been the creation of a community coalition led
by the Community of Vermont Elders (COVE) with a demonstration grant
from the Better Jobs/Better Care (BJBC) program[^805] to develop quality
criteria for nursing homes and other LTC providers that include staff
development and support, working conditions, and recognition for
workers. One outcome of the effort was the appropriation by the 2004
legislature of \$7 million in extra funding to support nursing home rate
rebasing that will augment funds for direct care staff. The coalition
also won a 5 percent increase (to \$50 per day) in rates for assistive
community care services in residential care homes.

DAD and the Vermont Health Care Association have collaborated to develop
a "Gold Star" designation program to improve staff retention in nursing
homes.[^806] The program was designed by nursing home professionals and
state staff to promote nursing homes that agree to use best practices
with their employees. Nursing facilities must meet criteria in seven
areas (the examples for each component are taken from descriptions in
the BJBC newsletter):[^807]

-   *Staff recruiting:* Honest depiction of job duties and expectations
    and involvement of direct care workers in interviewing.

-   *Orientation and training:* Well-developed orientation and hands-on
    training and mentoring for new employees.

-   *Staffing levels and work hours:* Flexible scheduling, worker
    control over hours, and safe workloads.

-   *Professional development and advancement:* Career ladders,
    mentoring opportunities, and training in specialized care.

-   *Supervisory training and practices:* Training for all supervisory
    staff, accessible supervisors, and respect for all workers.

-   *Team approaches:* Involvement of direct care staff in care
    planning, permanent assignments for patient care, and regular
    communication among team members.

-   *Staff recognition and support:* Rewarding years of service with pay
    increases or opportunities for advancement, counseling resources,
    and strategies to express appreciation and respect.

Nursing facilities are to be given flexibility in how they implement the
practices within their own facilities. A nursing home must be a
participating Gold Star facility to qualify for one of the five \$25,000
Quality of Care awards given by DAD each year.

#### Consumer Direction

Providing consumers with the opportunity to choose their own services
and providers and to direct their own care has been a key element of
Vermont's programs for people with disabilities. The "Principles of
Developmental Services" for people with developmental disabilities, for
example, talks about "meaningful choices" that ensure that "each
recipient is directly involved in decisions that affect that person's
life." Another principle states that "adults, regardless of the severity
of their disability, can make decisions for themselves...."[^808]
Vermont policymakers strongly support the concept because of consumer
preference, cost-effectiveness, and shortages of paid providers,
particularly in rural areas.

For the elderly and older adults with physical disabilities,
self-directed services have been integral to programs managed by DAD.
The agency provides consumers with a "Consumer and Surrogate Directed
Services Employer Handbook." In 1997, the state began offering enrollees
in the Medicaid Home-Based Waiver Program the option of directing their
own care, and a year later, provided a surrogate-directed choice.

Currently, half of all personal care hours under the Home-Based Waiver
Program are used by people who manage their own care or have a surrogate
for this role.[^809] According to Patrick Flood, commissioner of the
Department of Aging and Independent Living, this widespread use of
consumer-directed services saves the state money that can be applied to
expanding HCBS. "We were paying \$24 per hour for a home health aide,"
he said, compared to \$12 for consumer-directed care." "If we didn't do
this, we would not have been as successful in shifting dollars to home-
and community-based services," he adds.

Individuals in the state-funded participant-directed component of the
ASP may even hire their own spouses to provide their care. Participants
recruit, select, and supervise their workers, and develop work
schedules. The participant and attendant complete, sign, and submit
biweekly time reports to a designated payroll agent, who approves the
payment and mails a check to the worker.

Vermont Independent Living Center director Debra Leese Baker says that
consumer direction also needs to be made available to people with
psychiatric disabilities. Even with consumer direction options for the
other programs, she says, finding workers is difficult because of the
low pay and benefits for direct care workers. She points to the
state-funded participant-directed program, which allows spouses to be
paid as aides but which is underfunded because of the state's fiscal
constraints. "We hope we'll get permission under the new Medicaid 1115
waiver to pay spouses," she says.[^810]

#### Innovative Practices

While Vermont has a number of noteworthy initiatives and practices,
probably the most significant are its waiver proposal to create equal
access to either nursing home or home- and community-based care and its
comprehensive community care system for people with developmental
disabilities.

***The 1115 Medicaid waiver proposal:*** DAD filed a 1115 Research and
Demonstration Waiver proposal in October 2003 with CMS after a year-long
planning process with providers, advocates, and consumers. The program
would allow the state to create a program without an institutional bias
by combining Medicaid HCBS waiver funds with the state's nursing home
appropriation in a "global budget."[^811] (Vermont spent a total of
\$133 million in FY 2004 for all LTSS, including nursing home care.)

Eligible elderly people or people with disabilities would have the
option of receiving either Medicaid-covered HCBS or care in a nursing
home. People choosing HCBS will not have to wait for a slot to open up
in the Medicaid waiver program.

The state proposes to establish a priority system for eligible people,
who will be placed into three groups: highest need, high need, and
moderate need. The highest need group, who must meet the state's
Medicaid financial eligibility criteria,[^812] will be entitled to
either nursing home care or HCBS. The high need group will not be
legally "entitled" to LTSS, but will be served to the extent that funds
are available. These consumers will also have to meet Medicaid financial
but not functional eligibility criteria. The moderate need group will
consist of people who do not meet nursing home or HCBS waiver
eligibility criteria but are believed to be at risk for
institutionalization based on their assessed care needs. (Functional
eligibility criteria for each group are listed in Attachment 4.A.)

Service options for the highest and high need groups are the same: case
management, personal care, adult day services, respite, companion
services, assistive technology and home modifications, emergency
response system, enhanced ARC, or nursing facility care. The type and
amount of services depend on the assessed strengths and needs of each
individual. For consumers with moderate need, service options will
include case management, adult day services, and/or homemaker services.

At the time of the state's application, 2,200 people were "entitled" to
nursing home care in the state. State officials believe an additional
800 people will benefit from an entitlement to either nursing home care
or HCBS. As of October 2004, the state had not yet received formal
federal approval of the proposal, although most details had been worked
out by the state and CMS. State officials estimated a July 1, 2005,
start for the program.

***A model developmental disabilities system:*** In a review of the
state's renewal request for its Medicaid HCBS waiver program for people
with MR/DD, CMS said that the Vermont system for this population serves
as a model for other states.[^813] The federal agency said

Vermont's home- and community-based services waiver for individuals with
mental retardation and developmental disabilities continues to reflect
the commitment and dedication of the Division of Developmental Services,
other involved State officials, service providers and other stakeholders
to provide high quality developmental services and opportunities for
enjoyment of life in the community to all people receiving developmental
services.

Goals and outcomes defined in Vermont's Developmental Disabilities Act
of 1996 and its implementing regulations are reflected in all systems
operating within the waiver. DDS staff continue to strive to improve all
aspects of the program Their focus on continued growth in the quality of
individualized planning and consumer involvement, health and wellness,
provider oversight, and accountability in the utilization of resources
for outcomes-based service delivery, can serve as a model for other
home- and community-based services waiver programs.[^814]

The federal agency said that DDS ensured ongoing quality in its program
through "availability of full information, individualized supports,
meaningful choices, community participation and employment,
accessibility, health and safety, trained staff, and fiscal integrity."
The CMS report noted that Individualized Support Agreements (care plans)
use a person-centered approach, which sometimes includes brief histories
of the participant's experiences and goals, often written in the
participant's own words.

DDS has produced a document called "Individual Support Agreement
Guidelines," intended for a consumer audience to help participants
understand the process and to provide information about supports,
approvals, and making changes The CMS report also noted that all
consumers whose case files were reviewed had current documentation of
their need for an intermediate care facility for the mentally retarded
(ICF/MR)[^815] level of care and therefore of their eligibility for HCBS
waiver services.

#### Future Plans and Challenges 

A DAD goal that was articulated in the "Shaping the Future of Long-Term
Care" reports has been to establish a county minimum of 40 HCBS waiver
slots for every 60 Medicaid-funded nursing home beds. Five of the
state's 13 counties had reached or exceeded that goal by 2003, with
several other counties "poised" to reach the goal, according to
DAD.[^816] Setting these goals and implementing the planning efforts to
reach them has helped the state to learn which counties "need more
infrastructure building," says Peter Youngbaer of the Coalition on
Disability Rights.

Youngbaer also notes that the state is in the middle of an
*Olmstead*[^817] planning process, and is developing a plan that will be
more comprehensive than the "Shaping the Future" reports. The *Olmstead*
plan, he says, will encompass education, transportation, housing, health
care, and other relevant issues.

An effort is also under way to better manage care for people who need
both medical and chronic care services. Vermont was one of nine states
that participated with the Hartford Foundation to establish PACE
(Programs of All-Inclusive Care for the Elderly) in their states. In
Vermont, the plan is for these programs to operate in Burlington and
Rutland, with about 100 clients in each of the two areas. The
legislature appropriated \$100,000 for planning work.

Although Vermont did not experience as severe a fiscal crisis as many
other states in 2002 and 2003, funds have been tight for initiatives,
such as improving direct care worker wages and benefits or increasing
funds for accessible and affordable housing. Agency officials talk about
waiting lists for certain services or programs, such as the Flexible
Funding Program for families of people with developmental disabilities .

Vermont continues to evolve its system of LTC services and supports,
which reflects a commitment to offering options to people with
disabilities about where they will live, what kinds of services they
will receive, and how they want to direct those services.

## Attachment 4.A Functional Criteria for 1115 Waiver Program[^818]

### Highest Need Group

-   Individual needs extensive or total assistance with one or more of
    the following: toileting, eating, bed mobility, and transfer and
    needs *at least* limited assistance in any other ADL; or

-   Individual has a severe impairment with decision making skills *or*
    a moderate impairment with decision making skills *and* one of the
    following behavioral symptoms/conditions that is not easily altered:
    wandering, verbal abuse, physical abuse, inappropriate behavior, or
    resists care; or

-   Individual has any of the following conditions or treatments that
    require skilled nursing assessment, monitoring, or care on a *daily
    basis:* Stage 3 or 4 skin ulcers, IV medications, end-stage disease,
    ventilator/respirator, potential feedings, sectioning, nasogastric
    tube feeding, or second- or third-degree burns; or

-   Individual has an unstable medical condition that requires skilled
    nursing assessment, monitoring, and care on a *daily basis* related
    to conditions or treatments, including but not limited to (19
    conditions or treatments are listed that include dehydration,
    internal bleeding, therapy, aphasia, transfusions, surgical wounds,
    oxygen respiratory, and cerebral palsy).

### High Need Group

-   Individual who requires extensive to total assistance on a daily
    basis with any of the following ADLs: bathing, dressing, eating,
    toileting, and/or physical assistance to walk. Individual requires
    skilled teaching on a daily basis to regain control or function with
    ADLs, gait training, speech, range of motion, or bowel and/or
    bladder training; or

-   Individual who has impaired judgment or decision making skill that
    requires constant or frequent redirection for ADLs *or* one of the
    following behaviors that require a controlled environment to
    maintain safety: constant or frequent wandering, inappropriate
    behavior, or aggression; or

-   Individual who has any of the following conditions or treatments
    that require skilled nursing assessment, monitoring, and care on
    less than daily basis and an aggregate of daily services, including
    rehabilitation therapy: wound care, medication injection, end-stage
    disease, potential feeding, suctioning, ventilator/respirator,
    nasogastric feeding, and severe pain management.

### Moderate Need Group

-   Individual requires supervision or any physical assistance three or
    more times in seven days with any single or combination of ADLs or
    IADLs,[^819] or

-   Individual has impaired judgment or decision making skills that
    require general supervision on a daily basis, or

-   Individual requires at least monthly monitoring for a chronic health
    condition, or

-   Individual's health condition would worsen if LTC services are not
    provided or if services are discontinued.

### Minnesota

*We envision a long-term care system that supports self-determination,
provides services that meet consumer needs, provides high-quality care,
(and) ensures efficiency and affordability.*\
---Minnesota Long-Term Care Task Force, January 2003

#### Introduction

In 2001 the Minnesota Legislature enacted a series of measures to expand
LTSS that built on a set of recommendations issued by a task force the
year before. The goal was to reduce institutionalization of people with
disabilities and expand the availability of home- and community-based
options. Although the task force work and the subsequent legislation
were framed with a focus on the older population, the state has also
been steadily improving community options for other disability groups as
well.

As a result of these efforts, Minnesota closed almost 5,000 nursing home
beds from FY 2001 to FY 2003. The number of people age 65 and older
served through publicly funded HCBS grew from 23,000 to nearly 30,000, a
25 percent increase, over those years.[^820] Minnesota has also seen a
surge in housing options for people with disabilities that has included
a doubling in the number of assisted living residences over the previous
five years.

The state has also made a major effort to provide most people with
disabilities an opportunity to direct their own services. That option
has been available for many years in selected counties to participants
in the Medicaid Personal Care program and in the Medicaid HCBS waiver
program for people with mental retardation and related conditions. With
federal approval, the state plans to extend consumer direction in 2005
to all counties and to its other four Medicaid waiver programs, as well
as to two managed care programs that provide a combination of Medicare
and Medicaid health and LTSS.

#### Background

The total population of Minnesota in 2000 was about 5 million people.
The number of people age 65 and older totaled almost 600,000, which was
12.1 percent of the total population (compared with the national average
of 12.4 percent).[^821] The population is largely white (89.4 percent)
with 3.5 percent who are black, 2.9 percent Asian, and 2.9 percent
Hispanic. People who are foreign born constitute 5.3 percent of the
state's total population.

Individuals with incomes below the poverty level in 2000 account for 7.9
percent of the population (for people age 65 or older, the percentage
was 8.2 percent). Fourteen percent of the population age 21 through 64
reported having a disability, as did 36.9 percent of the over-65
population.[^822]

#### Integrating Services for People with Disabilities

The Minnesota Department of Human Services (DHS) is an umbrella agency
that ensures basic health care for low-income Minnesotans, provides
economic assistance, and assists people with disabilities and the
elderly. The department's FY 2004--2005 biennial budget includes a
little more than one-third of the state's total public spending.[^823]
In outlining department priorities in 2003, DHS included a goal of
providing "more consistent services across all of the home- and
community-based waivers through development of a common services menu
and a common screening tool."[^824] The DHS agencies with major
responsibilities for services for people with disabilities include the
following:

-   The **Disabilities Services Division,** which encompasses services
    for people with developmental disabilities, traumatic brain
    injuries, physical disabilities, and chronic medical conditions;

-   The **Mental Health Division,** which provides support to counties
    that are the local mental health authorities; and

-   The **Aging and Adult Services Division,** which provides protective
    services, supportive assistance, and alternative housing
    arrangements for older people and vulnerable adults.

A different form of integration that Minnesota has pioneered is the
Minnesota Senior Health Options program that provides Medicare and
Medicaid benefits through an integrated care coordination model to a
voluntarily enrolled group of older people who are eligible for both
Medicare and Medicaid. About 5,000 people in 10 Minnesota counties
receive their care through a provider network they select. Enrollees
live in both nursing homes and community settings.[^825]

Another model of integration is the demonstration project mandated by
the 2003 Legislature that moves the Medicaid Elderly Waiver HCBS program
into the Pre-Paid Medical Assistance Program, thus integrating medical
care and LTC for elderly Medicaid recipients who are at risk of
institutionalization.[^826] This program, originally scheduled for
implementation July 1, 2004, was delayed six months to a year to give
counties and health plans a chance to negotiate a role for counties in
this new managed care model.[^827]

#### Expansion of Community Supports

In 1980, Minnesota's nursing home utilization rate was the highest in
the country, 8.8 percent of people age 65 and over. In 1983, the state
began providing HCBS for Medicaid-eligible older people at risk of
institutionalization through the Elderly Waiver program. At the same
time, the state established a parallel state-funded Alternative Care
program for older people of low income who were not eligible for
Medicaid.[^828]

Despite these efforts, high nursing home utilization rates continued. In
1996, Minnesota spent 92.6 percent of its Medicaid LTC dollars on
nursing homes, ranking seventh out of 50 states in the proportion of
those Medicaid expenditures going to nursing home care. The result was
the formation of a Long-Term Care Task Force composed of Minnesota
legislators and state agency officials in 2000 to address gaps in the
state's programs and delivery of LTSS, and to develop strategies for
addressing those issues.[^829]

The task force issued a report, "Reshaping Long-Term Care in Minnesota,"
in January 2001.[^830] A number of its recommendations were enacted into
law by the 2001 Legislature, including the appropriation of \$183
million to carry out many of the provisions, including the funding of
community service grants to pay startup, capital, and other costs for
developing supportive housing and HCBS in areas where current resources
were judged inadequate to meet needs. Examples of some of the 200
community services grants that were awarded in 2002 and 2003 include the
following:

-   **Ageless Care Options**---Coordinate care, provide licensed home
    care services for older adults in four senior apartment buildings in
    the town of Grygla, and two senior apartment buildings in Warroad,
    provide adult day services and transportation services for residents
    of the senior apartments and other older people in both towns.

-   **Sholom Home East**---Purchase a van to deliver kosher meals for 30
    to 40 people, and add restrooms and shower/tub for Adult Day Service
    program in St. Paul.

-   **First Care Medical Services**---Provide assisted living services
    to at least 18 clients in four subsidized senior apartment buildings
    in Fosston, Minnesota.

-   **Lutheran Social Services**---Provide assisted living services to
    40 people in three affordable apartment buildings in Carver County.

-   **Highland Manor, Inc.**---Construction of 16 units of low-income
    senior housing in New Ulm in conjunction with a Section 202 grant
    from the U.S. Department of Housing and Urban Development (HUD),
    register the building as housing with services, and provide licensed
    home care.

-   **Eventide Home Association**---Close Eventide 50-bed nursing
    facility in Mountain Lake and convert it into 14 units of affordable
    assisted living plus, out-of-home respite, and an 8-unit dementia
    care facility; collaborate with Good Samaritan Village to delicense
    15 nursing facility beds and create private rooms.

-   **Western Community Action, Inc.**---Use volunteer drivers and
    public transit buses to provide transportation in Marshall to
    distant medical clinics and local senior support services.

Other initiatives supported by the legislation included expanding
in-home services programs, providing incentives for nursing homes to
voluntarily close beds or convert them into assisted living, authorizing
grants for providers who developed best practices and innovation in
delivering services, and creating scholarship programs for direct care
workers in nursing homes.[^831] (Further details on the scholarship
programs are provided in Section VI, Workforce Issues.)

In February 2002, the Minnesota DHS issued a report, "Keeping the
Vision," detailing progress on addressing local gaps in long-term
services. The 2001 legislation had called for a local analysis and
planning process to assess how well counties were currently meeting the
long-term needs of older people. The services and supports most
frequently rated by local authorities as being inadequate included
transportation, in-home respite and caregiver support, and chore
services Counties cited lack of start-up funding, lack of staff, and low
reimbursement as barriers to further development. Other barriers
included service delivery problems in rural areas, and lack of awareness
of services by many seniors.

Local communities had also reported a shortage of accessible and
affordable housing.[^832] By early 2004, the DHS was able to report that
93 percent of counties reported that there were more home and community
care options in their counties in 2003 than in 2001. Sixty percent of
the counties described their supply of HCBS as "adequate." As evidence
of the increased availability of community services, the number of
people receiving such publicly funded services totaled 38,555 in FY
2003, an increase of almost 60 percent over the number of participants
in FY 2000.

**Programs for individuals who are elderly and/or physically disabled:**
Four of Minnesota's five Medicaid HCBS waiver programs cover elderly and
physically disabled people: the Elderly Waiver, Community Alternatives
for Disabled Individuals, Community Alternative Care, and the Traumatic
Brain Injury Waiver. The fifth Medicaid waiver program is for people
with mental retardation and related conditions (see below).

Six services are part of all five waiver programs: case management,
homemaker services, home modifications, extended personal care assistant
services (assisting with daily activities such as bathing and
dressing),[^833] respite care, and transportation. (Other services
specific to a individual waiver program are noted within the
descriptions for that program.)

*Elderly Waiver:* One of the largest publicly funded HCBS program
operated by Minnesota is the Medicaid Elderly Waiver (EW) program, which
grew from 9,772 participants in FY 2000 to 13,405 people in FY 2003.
Services can be provided not only in the home but also in assisted
living facilities, foster care homes, and residential care.

Two new services for the EW were approved by the Federal Government in
April 2004: transitional supports and consumer-directed community
support. Transitional supports are intended to help cover the activities
and expenses incurred in moving from a nursing home to the community,
such as expenses related to establishing housing such as lease or rental
deposits, essential furniture, and utility set-up fees and deposits.
Consumer-directed community supports refers to a model of self-direction
that the state has made available in other Medicaid waiver programs for
several years, and will now implement in the EW program in April 2005.
(For further details on self-directed models of care, see "Consumer
Direction" below.)

*Community Alternatives for Disabled Individuals:* This is a waiver
program for children and adults under age 65 who would otherwise require
a nursing home level of care. The category includes people with physical
disabilities or mental illness. Enrollment more than doubled from FY
2000 to FY 2003---from 3,957 participants to 8,420 participants.[^834]
An additional service provided under this program is supported
employment.

*Community Alternative Care:* A small program, the waiver covers
children and adults who are chronically ill or medically fragile and who
require a level of care provided at a hospital. In FY 2003, CAC had 165
participants. An additional service covered under this program is
extended prescription medication.[^835]

*Traumatic Brain Injury:* Eligible individuals include people with a
traumatic or acquired brain injury that is not congenital, who have
significant cognitive and behavioral needs related to the injury, and
who require the level of care provided in a specialized nursing
facility. The program had 861 participants in FY 2003.

Two state-funded programs cover community services for older people as
well. One is the Alternative Care (AC) program serving people whose
income and assets would be inadequate to fund a nursing home stay for
more than 180 days. Although the program reached a total enrollment of
12,233 people in 2002, the caseload dropped to 11,709 people in FY 2003
and was dropping further by the end of calendar year 2003, according to
state officials. In the face of serious budget shortfalls, the 2003
Legislature had taken actions to reduce program expenditures, such as
tightening eligibility criteria, expanding monthly fees, and imposing
state recovery provisions (liens).[^836]

Another state-funded home care program is the Consumer Support Grant
program, which is an alternative offered to participants in the Medical
Assistance (Medicaid) home care program who can choose to switch to this
consumer-directed model. They receive a grant to purchase the services
of a personal care attendant and they can purchase supplies. The amount
of the grant is based on an assessment by a case manager and on the
prevailing rate for the provider they choose to use. They can receive
their grant in the form of cash, vouchers for services, or direct
payments to vendors.

**Programs for people with developmental disabilities:** The Medicaid
Mental Retardation/\
Related Conditions (MR/RC) waiver program (which many other states call
mental retardation/developmental disabilities) received about 79 percent
of total Minnesota Medicaid waiver program expenditures in FY 2003. The
number of recipients almost doubled from 8,313 participants in FY 2000
to 15,704 participants in FY 2003.[^837]

In FY 2002, Minnesota spent \$139 per capita on the MR/RC waiver
program, which was the second highest per capita rate in the country and
three times the national average. Compared with the national average,
Minnesota spent 22 percent *less* per capita on institutional care for
people with mental retardation.[^838]

In addition to the services available in all the waiver programs, the
MR/RC program covers supported living and day training/habilitation.
Supported living refers to a set of related services, including training
and assistance in self-care, communication, interpersonal skills,
sensory and motor development, money management, health care, community
living, leisure and recreation, and reduction in challenging behaviors.
Almost 70 percent of expenditures for the program goes to supported
living services.[^839]

According to state reports, the program has changed substantially since
the late 1990s. For example, the state introduced consumer-directed
community supports in certain counties in 1998, which allows recipients
and their families to select their services and employ friends and
family members if they wish. In FY 2003, almost 3,300 MR/RC waiver
recipients chose consumer direction.[^840]

In 2001, the state instituted an open enrollment period to reduce the
program's long waiting list. The result was an increase of more than
5,500 people to the waiver program, a 50 percent jump in the program's
caseload. However, faced with state budget shortfalls, DHS reduced the
rate of growth in the county budgets for the MR/RC waiver program in
2003. (DHS sets the county budgets for the waiver program, which
counties may not exceed unless they pay for the excess.)

Still, the state reports that 3,485 people were waiting for MR/RC
services as of June 30, 2003. Legislative researchers point out,
however, that more than 2,600 people in this group were living with
their immediate family, or an extended family member, and may have been
receiving other Medicaid home care services, family support grants, or
other publicly funded assistance while on the MR/RC waiting list.[^841]

**Programs for people with mental illness:** The 1987 Minnesota
Comprehensive Adult Mental Health Act established basic standards for a
statewide network of services for this population. It is a
state-supervised, county-administered system. The counties either
provide services directly or have contracts with local mental health
providers. Community Mental Health Centers located throughout the state
provide a range of services such as outpatient treatment, medication
management, and community-based services. Seventy-two residential
treatment facilities generally have 16 beds or less and provide 24-hour
supervised treatment for people who require a more restrictive,
supervised setting before they can move to more independent living in
the community.

Public mental health services are developed by each county board and
must include (1) education and prevention services; (2) emergency
services---24 hours a day, seven days a week; (3) outpatient
services---individual, group, and family therapy, diagnostic
assessments, medication management; (4) community support
services---designed to help an individual function and remain in the
community; (5) residential treatment services---a 24-hour program in a
community residential setting; (6) acute care hospital inpatient
treatment; (7) regional treatment center inpatient services; and (8)
case management.

In 1997, Minnesota began a Mental Health Initiative intended to
encourage counties to work together through greater regional planning to
reduce reliance on facility-based care for people with mental illness
(particularly care in the five state hospitals) through alternative
service delivery models in the community. The state wanted to get away
from an 87-county approach, state officials say, and instead encourage
counties to develop service packages that could cross county lines.
Sixteen initiatives emerged out of this effort, with the largest
regional grouping involving 18 counties working together.[^842]

The initiatives have included expanded crisis services, housing and
supports, and Assertive Community Treatment teams that provide intensive
case management. The state also moved 250 state employees out of the
state hospitals to work in mental health centers and other community
facilities.

The Minnesota Legislature also turned its attention to adult mental
health reform legislation in 2003, fostering a broad array of
community-based mental health services, including a range of housing
options. The intent was to develop services in closer proximity to where
people lived, rather than forcing them to travel to regional treatment
centers. The goal is the development of natural support systems, such as
smaller hospital units, crisis response services, in-home supports, and
long-term residential supports.[^843]

A public-private partnership is also developing around mental health
issues in Minnesota. The formation of the Minnesota Mental Health Action
Group grew out of meetings among government officials and health care
providers in 2002 to try to determine why people with mental health
issues were increasingly being diverted to hospitals far from their
communities for assistance and treatment. The organization now consists
of mental health providers, hospitals, private organizations, health
plans, advocates, and government agencies. An example of the activities
that this effort has spawned is an East Metro Adult Crisis Stabilization
Collaborative that involves three counties, three hospitals, four major
health plans, and DHS. The group meets bimonthly and provides oversight
to a mobile crisis response team.[^844]

#### Residential Options

Minnesota has seen an explosion of housing development for people with
disabilities in recent years, particularly the development of assisted
living residencies. Between 1997 and 2004, the number of residences
doubled from 426 to 907, and the number of units tripled, rising from
13,000 to slightly more than 40,000 units. State officials say the state
now has more assisted living residences and units than it has nursing
homes and nursing home beds. Some of the growth can be attributed,
officials say, to nursing homes converting a portion or all of a
facility into assisted living.[^845]

The number of participants living in assisted living facilities and
receiving services through the EW or the AC programs rose from 4,285
clients in 2000 to 7,403 clients in 2003. Nearly all these people were
living in assisted living plus settings that provide 24-hour
supervision.[^846]

About 4,800 residential settings in the state come under the broad
heading "group residential housing"; about 4,000 provide adult foster
care, which are private homes that provide housing for up to five
people. About 13,600 people were being provided adult foster care in
2003. About 9 percent were seniors, and 52 percent of the clients under
age 65 were participants in the MR/RC Medicaid waiver program.[^847]

#### Workforce Issues

The Long-Term Care Task Force, in its 2001 report, gave significant
attention to the issues affecting both the paid direct care workforce
and the informal network of family caregivers. The report noted that
Minnesota was experiencing a severe shortage of workers in health and
LTC. In terms of family caregivers, the report pointed out that
Minnesota had one of the highest labor force participation rates for
women in the country, thus indicating the need for "supplemental
assistance that working women need ...to provide care to frail
relatives."[^848]

One measure that has evolved out of the concern about recruitment and
retention of workers in nursing homes is a small scholarship program.
The state has offered funds to nursing homes to provide scholarships to
lower-wage employees who work at least 20 hours per week. The
scholarships, which have averaged about \$1,000 for each eligible
worker, can be used for any educational program that would lead to
advancement within the facility or to a career in LTC, such as a
certified nursing assistant training for a licensed practical nurse or
registered nurse degree. The state set no limit on how much scholarship
money an individual facility could distribute. Whatever a facility did
spend was factored into its rate the following year.

In the first year (ending September 30, 2002), about 90 percent of the
state's facilities gave out scholarships to just over 3,000 employees
for a total of \$3 million. In the second year, about 75 percent of
facilities gave out more than 2,400 scholarships that totaled \$2.5
million.[^849]

Another direct care worker model than Minnesota has implemented is
called Shared Care; it is available to people participating in the
state's Medicaid Personal Care Assistance Choice program. This program
allows people receiving personal care services to direct those services
themselves. With Shared Care, two consumers can share a personal
assistant, with the cost divided between the two people. One example
would be a personal assistant helping two participants to go shopping
together, for which the worker will be paid one-and-a-half times the
regular rate.[^850]

To help family caregivers of children with mental retardation, Minnesota
provides a Family Support Grant, available to families with incomes up
to \$76,170 in annual adjusted gross income (2003). Grants may not
exceed \$3,000 per calendar year, and can be spent in any way that would
help the family keep their child at home.

#### Consumer Direction

In March 2004, the Federal Government approved Minnesota's request to
expand consumer direction statewide to all its Medicaid waiver programs
and to the Minnesota Senior Health Options (MSHO) and Minnesota
Disability Health Options (MnDHO) programs. Consumer direction had been
an option for people covered by the MR/RC waiver program since 1998, but
only in 37 counties. DHS immediately began developing a timetable for
full implementation of this expanded Consumer-Directed Community
Supports (CDCS) program by April 2005.

As described in a DHS bulletin, the consumer-direction option

includes a range of allowable services and supports that can be tailored
to meet an individual's needs. Recipients are able to describe services
and supports in ways that are meaningful to them and customize supports
to best meet identified needs. Part of the flexibility built into CDCS
is the ability to completely customize one's community support
plan.[^851]

The participant directs development of his or her own Community Support
Plan (care plan). The plan must delineate "individual specific
parameters," which include service outcome, how it will be met, what
training and qualifications are required of providers, how the service
will be monitored, and what the payment will be. DHS sets individual
budgets, and all services and supplies must be provided within the
budget amount. County or health plan case managers determine whether the
Community Support Plan assures the participant's health and safety, and
they authorize services and complete an annual reassessment of the
client.

Each participant must have a Fiscal Support Entity (FSE) to pay
providers or workers. The FSE must provide, at a minimum, payroll
assistance, and offer participants a range of services that allow the
client to select how much autonomy he or she wants in employing,
managing, and paying for services and supports. Clients will hire, fire,
manage, and direct their workers.[^852]

A \$900,000 federal grant under the Systems Change Grants for Community
Living program is being allocated to a program called Pathways to
Choice: Minnesota's Consumer-Directed Personal Assistance Program. In
describing its grant proposal, DHS noted that although the state has
been offering consumer direction options to participants in the Medicaid
Personal Care and several HCBS waiver programs, a chronic worker
shortage has been a major factor limiting the use of the option. DHS
planned to address this problem by developing a Consumer-Initiated
Partnership and Support (CIPS) model. Through CIPS, consumers will
access each other's natural supports, such as family and neighbors, to
provide personal care services.[^853]

Consumers will have access to a registry of available workers to help
match personal care attendants who want to work more hours with
consumers who need more assistance. Workers on this registry will be
paid a higher rate because provider agencies will charge only a fiscal
intermediary fee.[^854]

DHS planning director LaRhae Knatterud said the state had recently
received a Robert Wood Johnson Foundation grant to educate people about
consumer direction, including people who are not on Medicaid. According
to Knatterud, the state would like to encourage consumers buying
privately to consider consumer direction with an agency providing fiscal
intermediary services.

#### Innovative Practices

Minnesota's planning process for expanding its LTSS has involved
establishing benchmarks to measure progress, a unique feature of state
reform efforts. Another feature unique to Minnesota is its focus on how
services and supports are financed. The 2003 Legislature called for the
DHS to complete a study of nongovernmental resources, and to consider
options to help individuals and families use their own resources to pay
for needed LTSS.

##### Setting Benchmarks for Long-Term Care Reform

The Minnesota Long-Term Care Task Force not only established priorities
for a number of its strategies, it also set benchmarks to assess change
in the state's system. The first five benchmarks are listed below, with
the changes that have taken place as noted in the 2003 "Status of
Long-Term Care in Minnesota" report:

-   *Percent of public long-term care dollars spent on institutional vs.
    community care for persons 65+.*

This benchmark measures the relative proportion of the state's and each
county's total budget for nursing home care and for community care
(Medicaid EW program, state-funded AC program, and Medical Assistance
Home Care program). Minnesota's use of nursing home care was higher than
the national average with the statewide proportion of expenditures for
institutional care at 86 percent in 2001, 14 percent for community care.
In 2003, the proportion had shifted to 80/20, with expenditures in the
87 counties ranging from 67.2/32.8 percent in Crow Wing County to
96.5/3.5 percent in Cook County.

-   *Percent of nursing home residents 65+ that is case mix A.*

"Case mix A" is defined as a less-disabled class of residents who have
limitations in four to five daily activities (such as bathing, dressing,
and eating) but no special conditions and no nursing rehabilitation
needs. The state believes many of these residents can be maintained in
the community if proper supports are available.

This benchmark is in the process of being redefined because the case mix
A system was replaced in October 2002, and the benchmark now needs to
use measures in the new system. In 2002, 16 percent of nursing home
residents were case mix A.

-   *Percent of Elderly Waiver and Alternative Care recipients that is
    case mix B--K.*

This benchmark measures the percent of seniors in the EW and AC programs
that need more intensive services to remain in the community because of
greater difficulties with daily activities. In 2002, 37.2 percent of
statewide clients in these two programs had the higher case mix levels.
That proportion had increased to 39.7 percent in 2003, indicating that
more intensive services *were* being provided to keep people in their
homes and communities despite a high disability level.

-   *Ratio of nursing home beds per 1000 persons 65+.*

Minnesota's ratio of nursing home beds per 1,000 people has been higher
than the national average. The Minnesota ratio was 83.9 beds per 1,000
people 65 and older in 1993. By 2002, the ratio was down to 65.7 beds
per 1,000 (compared with 49 per 1,000 nationally). There is wide
variation among counties, with the ratio ranging from 132.3 in Norman
County to 22.4 in Anoka County.

-   *Percent of EW/AC recipients in assisted living that is case mix
    B--K.*

This benchmark measures the proportion of disabled recipients in
assisted living settings, with case mix scores of B--K reflecting need
for intensive services. To reduce reliance on nursing homes, the state
needs an adequate supply of housing options that offer high levels of
services. In 2003, 54 percent of assisted living residents receiving
publicly funded services were in the case mix B--K category.

The state concluded in its 2003 status report that the five benchmarks

indicate that the measures are changing in the direction called for in
the 2001 reform. The percent of total public long-term care dollars
spent on institutional care is declining, and the proportion spent on
community care is increasing. The ratio of nursing home beds per 1000
has continued its downward trend....

The "most dramatic" change, the report notes, has been the "increased
percentage of more disabled clients supported in the community with the
EW and AC programs."[^855] Knatterud says the state is "going in the
right direction on all the benchmarks."

##### Public-Private Financing Study

The 2003 Legislature called for the DHS to complete a study by January
2005 of nongovernment resources for LTSS, and to look at the feasibility
of various options to help individuals and families use their own
resources for this purpose. "New sources of non-governmental funds to
pay for long-term care are increasingly seen as options that could blunt
some of the projected growth in government entitlements for long-term
care services," says a DHS fact sheet on the project.[^856] The options
include the following:

-   Health insurance options, especially the inclusion of LTC in
    Medicare supplemental plans.

-   LTC insurance options, including incentives to purchase such
    insurance and expansion of individual and group-based products.

-   Life insurance annuities and combined life and LTC insurance
    products.

-   Reverse mortgage products and other options that make use of home
    equity.

-   Universal LTC tax/savings plans, similar to a plan passed by the
    Hawaii legislature but vetoed by the governor.

-   Personal savings and pensions.

-   Family care, including incentives for families to provide services
    or supports or to pay for services and supports through special
    loans.

The results of this analysis, says the department, will be a listing of
these options from strongest to weakest in terms of their ability to
achieve the state's policy goals and maximize private resources. "Our
goal is to find the right way to 'slice and dice' this set of options so
they work in Minnesota," says Knatterud. The department will attempt to
identify the most effective tools to implement the options, such as tax
incentives and consumer education and information.[^857]

DHS and the Minnesota Board on Aging sponsored a series of briefings on
these financial issues throughout 2004 that included bringing in
national experts to discuss possible approaches, such as LTC insurance,
reverse mortgage products, and various tax savings plans. The last of
the briefings in December 2004 was intended to be a statewide conference
to review all private financing options that had been explored in the
previous regional briefings, and to obtain input from Minnesotans on
which options they considered to have the greatest potential to meet
their needs. To inform and involve the public in this effort, DHS began
distributing an email newsletter in December 2003, and posting notices
on the DHS Web site about briefings, forums, and focus groups being held
as part of the project.

The DHS also has asked the University of Minnesota to apply national
data from the Employee Benefit Research Institute on future retirement
income and assets to Minnesota. The report is expected to help the state
determine the capacity of Minnesotans to pay for health and LTC costs in
the future and suggest options for addressing the adequacy of income and
assets.[^858]

Forty-eight percent of Minnesota's top 25 public and private employers
offer LTC insurance, compared with a national average of about one-third
of all large private employers. The state of Minnesota has been offering
an LTC insurance plan to its employees since 2000 (and later to
retirees). When the plan was opened in October/November 2000, initial
enrollment was 11,000 people (75 percent employees, 22 percent spouses,
and 3 percent parents of employees). The 18 percent rate of
participation of the 61,000 eligible state employees was the highest
initial enrollment of any public employee LTC insurance plan in the
country.[^859] (For details on the plan's major features, see Attachment
4.B.)

#### Future Plans and Challenges 

Like many other states, Minnesota has had to grapple recently with
budget deficits and shrinking expenditures, resulting in some tightening
of human services spending. For example, the 2003 legislature limited
increases in enrollment and reduced spending for the Medicaid HCBS
waiver programs. Still, Minnesota has been moving forward on many fronts
that significantly expand the options available to people with
disabilities to live and work in the community and to self-direct their
personal care services.

The landmark work of the Long-Term Care Task Force continues to generate
ideas and to stimulate initiatives. The Task Force set benchmarks to
measure the state's progress in rebalancing its LTC system, and status
reports help to keep the momentum going. In Minnesota, the 87 counties
deliver LTSS, and their efforts are being bolstered by community service
grants from the state and other state general revenue dollars. Minnesota
is also devoting considerable attention to the question of the most
effective way to encourage greater personal financial responsibility for
LTSS to conserve public resources for its most vulnerable populations.
Its review of these issues should produce significant proposals in 2005
for other states to consider.

## Attachment 4.B Minnesota Long-Term Care Insurance Plan for State Employees[^860]

The state offers two LTC insurance plans, one for state employees and
their spouses and parents, and another for retirees and their spouses.
The plans differ in underwriting, benefits, and costs. The employee plan
has 48 possible plan combinations; the retiree plan has 32 plan
combinations.

The main decisions an employee or retiree must make are as follows:

-   *Lifetime maximum amount.* For an employee, six possible limits are
    provided from \$100,000 to \$600,000. For retirees, four limits are
    possible from \$58,400 to \$219,000.

-   *Daily benefit amount.* The maximum dollars that can be paid out
    each day is either \$80 or \$120 per day.

-   *Inflation protection.* Participants can choose a lifetime 5 percent
    automatic benefit increase (no premium increases) *or* a guaranteed
    benefit option that allows the participant to purchase additional
    coverage in the future.

Premiums are based on the participant's age when coverage becomes
effective and will not increase as the employee ages. Examples include
\$20.03 a month for a 45-year-old and \$47.16 for a 65-year-old. (These
premiums, which were the cost of the plan in 2001, remained constant
through 2004.) Costs could be lower because Minnesota law allows
residents to claim a tax credit of up to 25 percent of LTC premiums
paid, or \$100 a year, whichever is lower.

The benefits include assistance at home, adult day care centers,
assisted living facilities, or nursing homes. The plan pays for a
variety of services for people who are unable to care for themselves
because of an injury, chronic illness (such as arthritis), acute episode
(such as a stroke), or cognitive impairment (such as Alzheimer's).

### Texas

*The Legislature envisioned...a health and human services system which
is not simply more efficient and cost effective...but which is
transformed in very fundamental ways to significantly improve the
quality of services provided to Texans who need these services.*\
---H.B. 2292 Transition Plan, November 2003

#### Introduction

For many years, Texas had a system of LTSS that was heavily dependent on
institutional care rather than on HCBS. The state had excess bed
capacity in its nursing homes and a high institutionalization rate for
people with developmental disabilities. This pattern began to change
beginning in the late 1990s.

In response to the U.S. Supreme Court *Olmstead* decision, then-Governor
George W. Bush issued an Executive Order in September 1999 directing the
Texas Health and Human Services Commission (HHSC) to review community
services and supports available to people with disabilities in Texas and
to propose improvements. With the creation of the Promoting Independence
Advisory Board that year, work began on expanding access to community
services.

A Promoting Independence Plan was delivered to the 77th Legislature in
January 2001, with a revised plan issued in December 2002. The
recommendations in these plans, and subsequent actions by the
legislature, have produced a number of initiatives that have greatly
increased opportunities for people with disabilities to leave
institutions to live in the community and to direct their own services
and providers.

One of the most important of these innovations, called the Rider 37
initiative (named for the rider to the state appropriations act that set
it in motion), has resulted in the relocation of thousands of
institutionalized Texans to community settings since its enactment in
2001. (Texas was also one of the first states to pioneer the concept of
Money Follows the Person[^861] in connection with its
deinstitutionalization drive, which a number of other states have
adopted.)

Even before the Promoting Independence initiative began, however, Texas
was also breaking new ground with its STAR+PLUS demonstration
program---a Medicaid pilot project to integrate delivery of acute and
long-term services through a capitated managed care system. Today, the
project serves more than 60,000 aged and disabled people in Harris
County (the Houston area).

#### Background

The total Texas population in 2003 was almost 22 million people, ranking
second only to California. About 15 percent of the population had
incomes at or below the poverty level in 2001. From 1998 to 2000, Texas
had the eighth highest rate of poverty in the nation. The percentage of
the population age 65 or older totaled 9.9 percent, compared with the
national average of 12.4 percent. About 3.6 million people had one or
more limitations in ADLs in 2002.

Fifty-two percent of the population is white and 11.5 percent is black.
Nearly one in three Texans are of Hispanic origin (32 percent compared
with the national average of 12.5 percent). People who are foreign born
constitute 13.9 percent of the population.[^862]

#### Integrating Services for People with Disabilities

***Reorganization to improve integrated service delivery:*** The Texas
HHSC was created in 1991 to oversee the state's health and human
services departments, which included the Texas Department of Mental
Health and Mental Retardation (TDMHMR), Department of Human Services,
and Department on Aging. As this umbrella agency grew, it came to
encompass 11 separate agencies that have administered more than 200
programs, employed about 50,000 state workers, and operated from more
than 1,000 different locations across the state.[^863]

In May 2003, the Texas legislature enacted H.B. 2292, consolidating the
duties and functions of the 12 agencies into a structure composed of
HHSC and four new departments. The transition plan for the new
organization noted that

Texans who seek the services and protections on the state's health and
human services enterprise today face a bewildering array of
organizations, office locations, and overlapping (sometimes conflicting)
programs and services. ...there is a lack of coherence and a lack of
integration in the services being provided to individual clients, groups
of clients, or geographic areas.[^864]

Although the new departments were all in place by the summer of 2004,
full implementation was expected to take three to five years.[^865]

Two of the new departments took over responsibility for all the services
for people with various disabilities:

-   **Department of Aging and Disability Services (DADS**)**:**
    Consolidates the mental retardation and state school programs of the
    former TDMHMR, the community care and nursing home services programs
    of the former Department of Human Services, and the aging services
    (mostly Older Americans Act programs) from the Department on Aging.

-   **Department of State Health Services:** Consolidates the health
    programs and the mental health community services and state hospital
    programs formerly operated by TDMHMR and the services formerly
    provided by the Texas Commission on Alcohol and Drug Abuse.[^866]

The other two departments are the Department of Family and Protective
Services (child and adult protective services and child care regulatory
services) and the Department of Assistive and Rehabilitative Services
(services for the blind and visually impaired and deaf and hard of
hearing and early childhood intervention services.)

A major issue for the new DADS involves the separate local service
systems and processes of the three agencies that have been merged. The
Department on Aging operates, for example, through 28 Area Agencies on
Aging, many of which are housed in regional municipal governing bodies.
The Department of Human Services operates through 400 local offices in
10 regions that serve all of the state's 254 counties. TDMHMR provides
services through local authorities in each county that provide services
to people with mental retardation directly or through a network of local
providers. The opportunity exists, says DADS commissioner Jim Hine, of
creating "a consistent, integrated and accessible 'front door' for
service delivery."

Another important feature of the reorganization is the integrated
eligibility determination process. The proposed redesign of the state
systems will allow Texans to apply for medical and aged and disabled
services, food, and cash assistance in person, through the Internet,
over the telephone, by fax, or by mail. Call centers are to be
established to receive and process applications.[^867]

Another pilot program is integrating funding and services for people
with mental health and substance abuse problems. Begun in 1999,
NorthSTAR is an initiative of TDMHMR and the Texas Commission on Alcohol
and Drug Abuse that is operating in the Dallas area to provide a single
system of care for mental health and chemical dependency treatment.

The 2003 legislature directed the Health and Human Services Commission
to expand managed care further. HHSC contracted with the Lewin Group in
2003 to project the cost impact of such an expansion. Based on the
consultant's findings, HHSC has developed a framework for
expansion.[^868]

#### Expansion of Community Supports

The Promoting Independence Advisory Board became the S.B. 367
Interagency Task Force on Appropriate Care Settings for Persons with
Disabilities after passage of S.B. 367 in May 2001, which called for
status reports on HHSC plans to "ensure appropriate care settings for
persons with disabilities." In its December 2002 report, the task force
noted a number of steps that had already been taken, such as the
following:

-   the creation of relocation specialists to help assist people who
    were making the transition from institutions to community
    residential settings,

-   the development of a new Texas Home Living Medicaid waiver program
    by TDMHMR to enable the state to move people off waiting lists, and

-   provision of housing vouchers for people transitioning from nursing
    homes.

**Programs for individuals who are elderly and/or physically disabled:**
Texas operates a number of Medicaid HCBS waiver programs, Medicaid state
plan services, and state-funded services under what DHS calls its
Community Care Program for the elderly and adults with disabilities.
(These programs have now been folded into DADS.) The *major* programs
that serve the largest number of people include the following:[^869]

##### Medicaid-Funded Programs

-   ***Primary Home Care*** is a Medicaid Personal Care program under
    the Medicaid State Plan. It is the largest Texas community care
    program in terms of participants, with an average monthly caseload
    of about 51,900 people of all ages who have limitations in at least
    one personal care task. The program provides personal care services
    (assistance with daily activities such as bathing and dressing),
    homemaking, and medical escort services.

-   ***Community Attendant Services*** is a variant of the Primary Home
    Care program for people with slightly higher incomes. The financial
    eligibility standard is an annual income of up to 300 percent of
    SSI, or \$1,656 a month in 2003. The program served an average of
    almost 35,000 people per month in 2003.

-   ***Community-Based Alternatives* (CBA),** which is a Medicaid HCBS
    waiver program, had an average monthly caseload of about 30,300
    people in FY 2003. Services include personal assistance, adaptive
    aids, medical supplies, adult foster care, assisted
    living/residential care, nursing, respite care, home-delivered
    meals, and home modifications.

-   ***Day Activity and Health Services*** are offered as an optional
    Medicaid State Plan service under rehabilitation services. The
    program provides nursing and personal care; noon meals and snacks;
    physical rehabilitation; transportation; and social, recreational,
    and educational activities. Individuals may receive up to 10 hours
    of services per day, five days a week. In 2003, this program
    provided day services to a monthly average of almost 16,000 people.

##### State-Funded Programs 

-   ***In-Home and Family Support*** provides direct grants to
    beneficiaries or their families, up to a maximum of \$3,600
    annually. About 3,800 people receive an average cash subsidy of
    \$150 per month. (They may also be eligible for a one-time grant of
    up to \$3,600.) This program is for people of any age with a
    physical disability that substantially limits the person's ability
    to function independently. People with incomes at or above 105
    percent of the state's median income must contribute to the cost of
    services on a sliding fee schedule. Grants may be used for
    therapies, medications, skills training, transportation, respite
    care, equipment, home modifications, or adaptive aids, or personal
    assistant services for medically fragile people.

-   ***Consumer-Managed Personal Assistant Services*** targets adults
    age 18 or older with disabilities who are capable of self-directing
    workers who provide personal care. Contract agencies determine
    client eligibility and the amount of care needed. These agencies
    also develop a pool of potential personal assistants and provide
    emergency backup if an assistant fails to show. The program serves
    about 700 people a month.

**Programs for people with mental retardation/developmental
disabilities:** Until the reorganization of the HHSC agencies, programs
for people with MR/DD were split between the Department of Human
Services and TDMHMR. DHS operated the Medicaid Community Living
Assistance and Support Services (CLASS) program for people with
developmental disabilities. The definition of the eligible population
for these services is "persons with related conditions," which is
defined as severe disabilities other than mental retardation (such as
epilepsy, brain injuries, and spina bifida) that originated before age
22. The caseload was about 1,800 people per month in FY 2003.

TDMHMR has operated the HCBS Medicaid waiver program for people with
mental retardation, which served an average monthly caseload of about
6,700 people in FY 2003. Both waiver programs offer the same menu of
services as do the waiver programs for the elderly and physically
disabled: nursing, respite care, home modifications, therapies, adaptive
aids and supplies, and emergency response systems. The CLASS program
also offers personal attendant services.

In 2000, TDMHMR implemented a process known as the Community Living
Options Process for individuals living in state-operated campus
facilities and community ICF/MR programs. The process helps identify
individuals who want to seek an alternative living arrangement. The
department may provide Medicaid waiver services to these individuals,
but the waiting list for such services is very long. As of February
2004, there were 908 ICF/MRs in Texas (including 13 state schools and
895 public or private ICF/MRs) serving more than 12,400
individuals).[^870]

Governor Rick Perry issued an Executive Order (R.P. 13) in April 2002
directing TDMHMR to develop a Medicaid "essential services" waiver
called the Texas Home Living Waiver. The intent is to move people who
are Medicaid-eligible but currently receiving state-funded services to
the Medicaid waiver program, thus freeing up state general revenues to
create additional program slots for people on the waiting list. Services
covered by this program include community support, day habilitation,
supported employment, specialized therapies, minor home modifications,
adaptive aids, and dental treatment.

Eligible recipients for these waiver services are people whose needs can
be met within a \$10,000 per year cost ceiling. The department
identified 1,915 people whose current general revenue--funded community
services cost between \$3,500 and \$10,000 per year. The Federal
Government approved the waiver application in February 2004; enrollment
was scheduled to begin in April 2004.

Despite this array of community programs and services, there were still
5,000 people in the 13 State Mental Retardation Facilities in 2003. In
addition, waiting lists for community services continue to be very
large. In September 2002, 11 individuals and The ARC of Texas filed a
class action complaint against HHSC, the Department of Human Services,
and TDMHMR for failing to provide people with MR/DD with community-based
options and services. The complaint charged that about 17,500 people
with mental retardation were on waiting lists for HHCS services and
another 7,300 people had requested but not received CLASS waiver
services. Final adjudication of all issues in the case had not been
reached as of October 2004.[^871]

**Programs for people with mental illness:** TDMHMR has been contracting
with 39 Community Mental Health Centers, which are also called Local
Mental Health Authorities, across the state, and NorthSTAR, a Medicaid
managed care plan that serves seven counties in the Dallas region. (The
Texas DHS now has responsibility for mental health programs.) Each
authority develops policy and coordinates and allocates resources within
its local service area, and generally contracts with another
organization to provide actual services.

A key model for service is the Assertive Community Treatment (ACT)
program, a national program endorsed by the National Alliance for the
Mentally Ill and adopted in Texas in 1995. ACT clinical and
rehabilitation staff provide psychiatric, substance abuse, nursing
services, medication management, employment, and housing services
through one service delivery system. The teams also work with families
to provide education and support.

About 50 teams throughout the state provide these services to people
with severe and persistent mental illness who have not responded to
traditional mental health approaches. The typical recipient of services
has schizophrenia or another serious mental illness, such as bipolar
disorder or major depression, and has experienced multiple psychiatric
hospital admissions.[^872]

S.B. 367 (2002) required TDMHMR to identify people who have been
admitted to state mental health facilities three or more times in 180
days or less as being at imminent risk of requiring placement in an
institution. The legislation required the state to develop strategies to
meet the needs of these people in the community. Monthly reports track
this population for the local community mental health authorities so
that intensive services can be focused on this group.[^873]

#### Residential Options

"Affordable, accessible, integrated housing remains an integral part of
successfully transitioning individuals from institutional care into the
community," noted the S.B. 367 Task Force.[^874] Governor Perry and the
Legislature requested that HHSA, DHS, and the Texas Department of
Housing and Community Affairs (TDHCA) develop a housing assistance
program to assist with these transitions from nursing homes to
residential settings.

Also pursuant to Governor Perry's April 2002 Executive Order, TDHCA sets
aside funds to serve people with disabilities who want to move out of
institutions to community settings. The department set aside \$2 million
to go to nonprofits, public housing authorities, and units of local
government that want to provide Tenant Based Rental Assistance (TBRA),
which include rental subsidies, security deposits, and utility
allowances (for 24 months). The income of a consumer assisted with TBRA
cannot exceed 80 percent of the area median income, and 90 percent of
the people assisted must have incomes below 60 percent of the area
median income.

An eligible entity could apply for up to \$500,000. Although the
department sent out information and held workshops across the state with
more than 600 entities (nonprofits, housing authorities, and independent
living centers), the program got off to a slow start. In 2003, only four
applications were received and approved for a total of \$442,681 to
provide rental assistance to 40 people. After potential housing
applicants said that the 6 percent administration fee allowed by the
department was too low, the TDHCA raised that fee to 10 percent. But
only one other application was approved in July 2004 for \$103,194 to
help 10 more people with rental assistance.[^875]

In August 2001, the housing agency received 35 out of 400 housing
vouchers made available nationwide by HUD under a program called Project
Access Housing Choice Voucher Program. The vouchers are provided to
people with disabilities who want to leave nursing homes to live in the
community. The vouchers help them to move into subsidized housing. The
first Project Access Housing Choice Voucher was issued in Texas in
August 2002.[^876]

The DHS also created Transition to Life in the Community grants, a new
statewide service within the In-Home and Family Support program. The
program targets people moving from nursing homes to the community, and
provides grants in amounts up to a maximum of \$2,500 to be used for
set-up costs. As of August 2003, the program had helped 91 individuals
with initial rent and utility deposits, and other relocation-related
expenses and household items.[^877]

Adult foster care is provided in DHS-enrolled homes. This service
provides 24-hour living arrangements, and includes meal preparation,
housekeeping, and help with personal care. Residential care in
DHS-licensed facilities provides services to eligible adults who require
access to services on a 24-hour basis, but who do not need daily nursing
intervention.[^878]

#### Consumer Direction

In July 2002, Texas was one of the first states to receive approval from
CMS for the implementation of consumer direction in multiple Medicaid
HCBS waiver programs and in the Medicaid state plan. Four Texas programs
had put consumer direction into practice in September 2001: three
programs in DHSDHS---CLASS, the Deaf/Blind waiver, and the
Consumer-Managed Personal Assistant Services programs; and one program
in TDMHMR---In-Home and Family Support program. In January 2002,
consumer direction was added to the Medicaid Primary Home Care (personal
care) program in DHS. With the added federal approval in 2002, Texas was
able to provide vouchers for participants of the CBA and STAR+PLUS
programs.[^879]

Consumers can manage, recruit, hire, supervise, and fire their workers.
A fiscal agent handles employer-related administrative functions, such
as payroll and tax-related reports, and provides back-up personal
assistants when a worker is sick or fails to show up. A more limited
version of consumer direction is the Consumer-Managed Personal Assistant
Services model. The program contracts with licensed agencies to provide
personal assistants. The agency determines consumer eligibility and the
amount of care needed, develops a pool of potential workers, and
provides emergency backup. The client supervises the worker.

Use of consumer direction was moving slowly in some programs, however.
HHSC reported the utilization rate of CDCS varied from a high of 28
percent in CLASS to a low of .07 percent in the CBA program and Primary
Home Care. The HHSC report noted that the state faced a key challenge in
ensuring that enrollees in the home- and community-based programs "are
aware of and sufficiently educated about" consumer direction.[^880]

To help consumers understand the concept and how they can use consumer
direction, Texas sought and was granted a federal Systems Change Grant.
The grant will help the state test two models of consumer control in one
region, then statewide. One model calls for participants to manage their
own budgets *and* hire and supervise their workers, while under the
other model, participants will handle the personnel duties but not have
budget responsibility.

#### Innovative Practices

Texas is breaking new ground with several of its LTSS projects. Other
states have developed projects similar to the two described below, but
Texas stands out because of the considerable number of people with
disabilities involved in these efforts and also by specific strategies
the state has adopted. In the Rider 37 initiative, the state and its
community partners have devoted significant resources to facilitate the
transition from nursing home to community living for the participants.

The STAR+PLUS project integrates acute and long-term services for
Medicaid recipients. One of the health maintenance organizations in the
pilot received approval from CMS in 2002 to operate as a Medicare+Choice
plan.[^881] For dual-eligible people who choose this plan, the state has
removed the three-prescription-per-month limit that applies to other
project participants.

***Rider 37 (Money Follows the Person):*** A number of factors were
responsible for the passage of Rider 37, including the U.S. Supreme
Court's *Olmstead* decision, the creation of the Promoting Independence
Advisory Board and its subsequent development of a plan and
recommendations, and legislative action to implement some of those
recommendations.

In September 2001, the Texas legislature included a rider in the state
appropriations act (Rider 37), which allowed the Texas DHS to move
Medicaid funding from its nursing facility budget to its budget for
Community Care Programs when a Medicaid recipient moves from a nursing
facility into a home or other residence in the community. The program is
called Money Follows the Person.[^882] A nursing home resident who wants
to move to the community does not have to wait for a slot to open up in
a Community Care Program, particularly the Medicaid waiver programs that
have long waiting lists.

The state has entered into relocation contracts with various
organizations, such as independent living centers, that have helped to
publicize the effort, identify individuals who want to move to the
community and are eligible to do so, and then assist them in making the
move. These organizations received Community Awareness and Relocation
Services funding to publicize the project and to help individuals make
the transition to the community. For the latter, grants of up to \$2,500
per individual are available as start-up funds for furniture, utility
and security deposits, and other essentials.

As of the end of February 2004, more than 3,400 people had made the
transition from an institution to the community under the Rider 37
program and its successor amendment, Rider 28. One-third of the
participants were under age 65, with the remaining two-thirds age 65 and
older. Within about half of the regions in the state, between one-third
and one-half of the people who relocated moved into assisted living
facilities. Within other regions, greater percentages of individuals
moved into their own homes or family homes. (Advocates have noted,
however, that lack of affordable and accessible housing still presents a
significant barrier for people moving out of nursing homes.)[^883]

Many observers believe that strong and persistent work from organized
advocates has been essential to the success of the Rider 37 effort to
date, as has been the ongoing partnership and collaboration among
advocates, DHS, and other groups. The Promoting Independence Interagency
Task Force, which formalized this collaboration, has been called a task
force "with high visibility and powerful influence."[^884]

In September 2003, the Federal Government gave Texas a grant of more
than \$730,000 to help educate employees and advocates involved in the
transition process about community care options so they could better
assist people leaving nursing homes to make appropriate community
choices.

##### Integrated Funding and Services for Acute and Long-Term Services 

Senate Concurrent Resolution 55 in the 74th legislative session required
the HHSC to pilot a cost-neutral model for the integrated delivery of
acute and long-term services for aged and disabled Medicaid recipients
in Harris County. The project required getting federal approval for two
Medicaid waivers, 1915(b) and 1915(c), in order to mandate participation
and to provide home- and community-based services. The Federal
Government approved the waivers in February 1998.

STAR+PLUS is a single capitated managed care delivery system that was
serving 63,630 people as of July 1, 2004. For people who are dually
eligible for Medicare and Medicaid (about half of the enrollees),
STAR+PLUS covers LTSS, and Medicare provides primary and acute care.
Participants may choose from two HMOs.

While dually eligible people constitute only 23 percent of the state's
Medicaid population, they account for almost 60 percent of Medicaid's
expenditures. Controlling costs for this population was a major reason
for the demonstration, as was offering a way to provide a continuum of
care with a wide range of options and increased flexibility to meet
individual needs.[^885]

LTSS provided by the HMOs include day activity and health services and
personal assistance. Additional services include adaptive aids, adult
foster home services, assisted living, emergency response services,
medical supplies, minor home modifications, nursing services, respite
care, and therapies. A care coordinator is responsible for coordinating
the client's acute and long-term services, even if the client is a
dually eligible person who receives Medicare services from a provider
not affiliated with the STAR+PLUS HMO.

#### Future Plans and Challenges

In additional to STAR+PLUS, the state has undertaken to test
consolidation of a number of different Medicaid waiver programs for
different groups of people with disabilities. The 75th legislative
session called for HHSC to conduct the three-year pilot in one county.
Under this demonstration, called the Consolidated Waiver Program, HHSC
provides a single array of services to multiple populations with
different types of physical disabilities who are sharing common
providers with consistent rates.

The pilot began in December 2001 and serves about 200 people annually.
It combines funding from five Medicaid HCBS waiver programs. Applicants
must be waiting for Medicaid waiver services from one of the five
programs and must meet level-of-care criteria for ICF/MR care or meet
the medical necessity criteria for nursing home care. The target
population is people who are medically fragile or have mental
retardation.

In the legislative session immediately following issuance of the
Promoting Independence Plan, legislators appropriated expansion monies
for all the state's community waiver programs, the development of
transition services, and alternative family-based options for children.
For example, \$63 million was appropriated for FY 2002 to provide
community services for 5,600 people on waiting lists. In addition, the
state received five federal Real Choice Systems Change Grants in 2003
that totaled \$3.3 million. One initiative that will be funded with this
money is the Creating a More Accessible System for Real Choice for
Long-Term Care Services (the Texas Access Project). In two areas of the
state, models of "system navigation" will be tested to help individuals
and families cut through state government bureaucracy and red tape to
obtain needed LTC services.

Still, in the face of the bleak budget situation that developed in
Texas, progress on expanding community options slowed. Long waiting
lists for community services remain a major challenge for the state.
However, the Promoting Independence Plan made clear that the state
viewed its response to the *Olmstead* decision as an ongoing process.
State officials say they intend to continue moving forward in their
effort to identify individuals who want to move out of nursing homes to
the community, help those individuals make that transition, reduce
waiting lists for community services, and coordinate all LTSS.[^886] The
restructuring of the human services agencies, which will take several
years to complete, offers the possibility of greatly improved
coordination and integration of publicly funded services for people with
disabilities, but it also involves a substantial amount of work and
commitment on the part of agency personnel as well as many other
stakeholders.

### Indiana

*Indiana has a long history of innovation and support for
community-based long-term care.*\
---Family Caregiver Alliance, 2002

#### Introduction

Indiana began moving away from institutional care for people with
disabilities and toward expanded HCBS in the early 1990s. Legislative
and gubernatorial actions led to the creation of commissions and task
forces to study the state's LTSS and to recommend ways to shift greater
resources to HCBS. The early 1990s also saw the creation of the
state-funded Community and Home Options to Institutional Care for the
Elderly (CHOICE) program, and a Medicaid HCBS waiver program for people
with MR/DD.

A quick look at Indiana's statistics shows, however, that the state
still must overcome significant hurdles if it is to meet its goal of
shifting greater resources toward home- and community-based care for
people with disabilities. About 76 percent of its Medicaid LTC dollars
(\$1.5 billion) were allocated to institutional care in FY 2003,
compared with the national average of 67 percent. The state has,
however, made significant strides in the last several years to build on
its earlier initiatives, and considerable pressure has been placed on
state agencies by advocates and lawmakers to continue the momentum.

From 1992 to 2000, the state reduced funding for institutional settings
by 52 percent, compared with a 16 percent reduction nationally. From
2001 to 2003, the state helped to create options for more than 4,800
elderly and 2,000 people with disabilities to live in their homes and
communities. A priority for the state is the expansion of community
services for 1,000 more people with developmental disabilities.[^887]

#### Background

Indiana calls itself "the crossroads of America." A midwestern state,
Indiana had a total population of about 6.1 million people in 2000, 87.5
percent of whom are white. Only 8.4 percent of the state population is
black and 3.5 percent is Hispanic. The population age 65 and older
totals about 752,000 (one in eight Hoosiers), of whom about 42 percent
have some limitation in two or more ADLs, as do about 18.5 percent of
the population age 21 to 64.[^888]

About 9.5 percent of the population had incomes at or below the poverty
level in 2000 (compared with the national average of 12.4 percent).

#### Integrating Services for People with Disabilities

The Family and Social Services Administration (FSSA) is an umbrella
agency that houses the Division of Disability, Aging and Rehabilitative
Services (DDARS) and the Division of Mental Health and Addiction (DMHA).
Within DDARS are the Bureau of Aging and IN-Home Services and the Bureau
of Developmental Disabilities. This structure was created by the Indiana
General Assembly in 1991 "to better integrate the delivery of human
services."[^889]

FSSA had a \$6.3 billion budget in FY 2003. The agency acts as the
safety net for nearly a million Hoosiers, about one in six people in the
state. In 1992, the IN-Home Services program was created, bringing
together funding from a variety of programs for the elderly and people
with disabilities: the state-funded CHOICE program, Older Americans Act
and Social Services Block Grant programs, and seven Medicaid HCBS waiver
programs.

For these programs, the state's 16 Area Agencies on Aging act as single
entry points, providing information about options and assistance in
applying for benefits. All community services for the elderly and people
with disabilities are integrated and delivered through the Area Agencies
on Aging. In 1998, the National Governors Association (NGA) recognized
Indiana for its interagency collaboration and innovations. Two strengths
of the Indiana system, the NGA said, were the authority given to case
managers to blend funds for home care and the decentralization of power
across Indiana's Area Agencies on Aging.[^890]

#### Public-Private Partnership

Indiana is one of only four states that are participating in a
public-private LTC insurance program that links purchase of private LTC
insurance with Medicaid coverage of LTSS. The program promises
protection from estate recovery of a Medicaid-covered nursing home
resident's assets after death if the individual has purchased LTC
insurance that initially paid for the institutional care.[^891]

The Indiana program offers two types of asset protection:
dollar-for-dollar and total asset protection. Under the
dollar-for-dollar option, for every \$1 of benefits that a policy pays
out, the purchaser earns \$1 of asset protection. To earn total asset
protection, on the other hand, the consumer must purchase a policy in an
amount that equals or exceeds a specified amount (a state-set dollar
amount), which was \$187,613 in 2004.[^892]

The enabling legislation for the program was enacted in 1987; federal
approval was received in December 1991. The first policies became
available in May 1993. By September 2004, about 31,000 people age 19
through 90 had purchased policies from the 12 insurance companies that
have been approved by the state to sell the policies. Fifty-three
percent of the purchasers were under the age of 65 (average age of
purchasers was 62). About 80 percent of the policies purchased included
coverage for both nursing home care and home and community care.[^893]

Through legislation enacted in May 1999, Indiana residents who pay
premiums for partnership policies could (beginning with the 2000 tax
year) receive a 100 percent tax deduction for the cost of the premiums.
There is no cap on the deduction. Indiana has also made LTC insurance a
pretax insurance option for all state employees.

#### Expansion of Community Services

Over the years, Indiana has had a much higher than average supply of
nursing home beds and high rates of institutionalization for people with
disabilities. Of total Medicaid LTC expenditures in Indiana in FY 1997,
about 91 percent went to institutional care and 9 percent to HCBS. By FY
2003, that split had dropped to 76 percent for institutional care and
risen to 24 percent for HCBS.[^894] From 1992 to 2000, the state reduced
funding for institutional settings by 52 percent.[^895]

The state's focus on community services was given impetus by several
commissions in the late 1990s and subsequent years. The first major
development was the 1997 passage of S.B. 317, which called for community
options for people with developmental disabilities. An S.B. 317 Task
Force appointed by the governor developed a comprehensive plan of
reforms in 1998. The state has since devoted significant resources to
implementing the S.B. 317 plan.

In September 2000, Governor Frank O'Bannon issued an Executive Order
that identified the FSSA as the agency in charge of planning to address
the issues raised by the U.S. Supreme Court *Olmstead* ruling in 1999,
which called for greater community integration of people with
disabilities. The Executive Order required FSSA to conduct a
comprehensive study of services for people with disabilities and to
recommend ways to improve community integration.

The agency released a plan on June 1, 2001: "Indiana's Comprehensive
Plan for Community Integration and Support of Persons with
Disabilities."[^896] The plan called for greater consumer choice,
support for the informal family network, strengthened quality assurance,
workforce development, and improved access to HCBS through expanded
information and assistance.

The next development was the creation by Governor O'Bannon in July 2002
of the Governor's Commission on Home- and Community-Based Services,
which released an interim report in December 2002 and its final report
in June 2003. The commission made 16 recommendations in its interim
report and 28 additional proposals in its final report.[^897] The
commission's goal, it said, was to develop short- and long-term
strategies to create or expand community options for people with
disabilities. (For further details on the commission's work, see
"Innovative Practices" below.)

Building on the recommendations of the Governor's Commission was the
enactment of S.B. 493 in 2003, which makes it a matter of state policy
for FSSA to establish "a comprehensive program of home- and
community-based services to provide eligible individuals with care that
is not more costly than services provided in institutions." Its
provisions include raising the monthly income standard for the Medicaid
Aged and Disabled Waiver program to 300 percent of the SSI standard
(having the effect of qualifying more people for Medicaid coverage under
the waiver), adding 20,000 Medicaid HCBS waiver slots (without
additional cost to the state), and adding spousal impoverishment
provisions to the Aged and Disabled Waiver (also a recommendation of the
Governor's Commission).[^898]

The legislature failed to fund the provisions of S.B. 493, however, in
the face of declining state revenues. Nevertheless, the Governor's
Commission chair Katie Humphreys believes that the general purpose of
S.B. 493 is to "eliminate barriers to care, increase community capacity,
and support consumer choice." Legislative analyst Kathy Norris points
out that lawmakers thought it important to authorize 20,000 waiver
slots, for example, even if money could not be found immediately to
allow filling the slots. Once the slots are available, Norris says, they
can be funded at a later date when the revenue outlook improves.

In FY 1998, total expenditures for the state's seven Medicaid HCBS
waiver programs was \$52 million. That total had reached almost \$295
million in FY 2003. By that year, the seven waiver programs were serving
a combined total of more than 7,600 individuals.[^899]

**Programs for individuals who are elderly and/or physically disabled:**
The two major HCBS programs for this population, as administered by the
Bureau of Aging and IN-Home Services, are the Medicaid Aged and Disabled
Waiver program and the state-funded CHOICE program. A waiver program for
coverage of services in assisted living facilities was approved by the
Federal Government in July 2002.

*Aged and Disabled Waiver program:* This waiver program was established
in 1990. In 2002, the state added about 1,600 slots to the program to
bring the total number of slots up to 6,000. However, due to budget
restrictions, the state was serving only about 4,000 people under the
program in 2004. Services include case management, attendant care,
homemaker services, respite care, adult day services, adaptive aids and
devices, and environmental home modifications.

*CHOICE program:* Beginning as a pilot program in several counties in
1988, CHOICE went statewide in 1992. The program was funded at about
\$48.7 million and served 11,272 people in FY 2003. The average monthly
care plan cost about \$538. As of January 31, 2004, 10,776 individuals
were on a waiting list for CHOICE services. (For further details on
CHOICE, see "Innovative Practices" below.)

**Programs for people with mental retardation/developmental
disabilities:** Indiana has made "tremendous progress in the past four
years in reducing reliance on institutions and in establishing the HCBS
waiver as a major funding source for community developmental
disabilities service expansion," according to a 2004 report.[^900] The
beginnings of this expansion of community services was passage of S.B.
317 in May 1997. This law called for the creation of a 12-member task
force whose responsibility was to prepare a comprehensive plan of
implementation for the future of community living arrangements for
people with MR/DD.

The task force issued a report in 1998 ("Comprehensive Plan for the
Design of Services for People with Developmental Disabilities") that
called for the implementation of person-centered planning and
person-centered funding for all people with developmental disabilities.
Other recommendations included redirecting funding in the developmental
disabilities system away from congregate settings to integrated housing
and day services, and expanding community capacity to support people
with developmental disabilities, and their families, particularly those
who had been waiting for services because of the lack of sufficient
resources in the system.[^901]

In response to the recommendation on person-centered planning, the state
promulgated a rule in May 2003 (460 IAC 7) that mandates the use of a
person-centered planning process, including the development of an
Individualized Support Plan (ISP) for all people getting services from
the Bureau of Developmental Disabilities Services (BDDS), whether they
are receiving supportive services in their homes or communities,
receiving services and supports from group home providers, or living in
ICF/MRs. The resources to help implement the ISP are allocated through
an Individual Community Living Budget, which becomes a financial
agreement between the individual, the provider agency, and the BDDS.

The state agency also adopted a policy for residents who moved to the
community from Central State Hospital, which closed in 1994, that
allowed the funds that supported those individuals at Central State to
be used for their community supports. "Funding following the person was
a key vision of the 317 plan," BDDS officials said in 2003, "and we
continue to make progress in this area."[^902]

The agency has also been able to report significant progress on the 317
Task Force recommendation about redirecting funding from congregate to
community settings. Of the 10 private ICF/MRs, only three were still
open in 2004. In 1999, the state had been serving 834 people in private
ICF/MRs; that number had dropped to 343 by the end of 2003. The
population of the State Development Centers went from 800 people in 1999
to less than 500 people in 2003 and was expected to drop to about 200
people by 2005. In addition to Central State Hospital, two other State
Developmental Centers (New Castle and Northern Indiana) were closed in
1998.

When the task force report was published in 1998, \$467 million was
being spent by the state for services for people with developmental
disabilities, of which only \$110 million was going toward community
services. About 5,000 people were on waiting lists for services.[^903]
The total number of people with development disabilities in residential
settings increased 34 percent between FY 2000 and FY 2004. Group homes
have been one of the community alternatives for people with
developmental disabilities. These are residences for four to eight
individuals that include 24-hour supervision by paid staff, who help
residents develop daily living skills.

Follow-up services for supported employment have also been expanding. In
2000, about 1,800 people received these services after getting a job.
The number had increased to 2,300 people by 2002, and BDDS has set a
goal of 3,700 by June 30, 2005. Medicaid spending for the HCBS waiver
program for people with developmental disabilities increased 360 percent
from FY 2000 to FY 2004, while ICF/MR spending dropped 16 percent.
However, while the number of people in the waiver program totaled 5,139
in FY 2004, more than 11,000 people still were on a waiting list for
services.[^904]

The two major Medicaid waiver programs for people with developmental
disabilities are the following:

*Developmental Disabilities Waiver:* Originally established in 1992 as
the ICF/MR waiver, the program was amended in 2001 to become a
Developmental Disabilities waiver program with expanded services, which
range from adult day services to case management and crisis assistance.
Recreational, occupational, speech, physical, and music therapy are
offered as well as community education and therapeutic activities (an
annual allowance to pay for the costs of community activities). Other
services include environmental modifications, family and caregiver
training, specialized medical equipment, and transportation. Services
under the waiver can also be provided in adult foster care facilities
(limited to four people per residence), and in 24-hour residential care
facilities.

The Federal Government approved an amendment in July 2003 to the
Developmentally Disabled and Autism waiver programs to provide a
Community Living Budget. This program provides a \$1,000 allowance to
people moving out of institutional care to community settings. The
allowance pays for the client's initial security deposit on an
apartment, essential furnishings, pest eradication, and set-up fees for
utilities and telephones. The program was originally entirely state
funded, but moving the program under Medicaid allows for a 62 percent
federal match.[^905]

*Support Services Waiver:* This program was created to address a problem
that had arisen with the Developmental Disabilities waiver. The
resources of that program were not proving sufficient to cover the
expenses of providing adult day services for many recipients, including
activities to help individuals get ready for jobs, supported employment
follow-up, and sheltered workshops.

Begun in April 2002, the Support Services program offers a family
allowance of up to a maximum of \$13,500 per person annually and is
intended for people living at home with their families or other informal
caregivers. The program includes all the services provided under the
Developmental Disabilities waiver program except for adult foster care
or residential services and environmental modifications. Enrollment
totaled 3,550 people in FY 2004; several thousand people were on a
waiting list for the services.

For people not financially eligible for Medicaid, state funds provide an
array of services that allow individuals with developmental disabilities
to live in their own homes. State funds may be used when other funds are
not available, such as when a Medicaid recipient loses eligibility for
that program.[^906] State funds are also available to cover rent and
meals (Residential Living Allowance) for people in residential
facilities whose services are being covered by the Medicaid Development
Disabilities waiver program; Medicaid does not cover rent and meals.

**Programs for people with mental illness:** DMHA reports that 38,194
adults with serious mental illness were served in the community in FY
2001. That number had increased to 42,076 by FY 2003.[^907] DMHA
contracts with managed care providers, which are generally Community
Mental Health Centers or networks of several centers. These centers, of
which there are 31 in the state, receive an annual allocation for each
person they enroll.

The primary source of services and supports for adults with serious
mental illness is the Hoosier Assurance Plan (HAP). This program
accounts for almost 80 percent of funded treatment services provided by
DMHA. People eligible for HAP must qualify for Medicaid or Food Stamps,
or have incomes that fall at or below 200 percent of the federal poverty
level. They must also meet certain evaluation criteria as determined by
mental health professions. The agency estimates that 59 percent of
eligible adults (people with mental illness who meet the low-income
requirements) are enrolled in HAP.

HAP does not pay for 100 percent of a person's care. Each individual in
the program is expected to contribute toward the cost of care based on a
sliding fee scale applied to the person's income.

The Mental Health Centers are responsible for providing a continuum of
care that includes individualized treatment planning to increase patient
coping skills and symptom management, 24-hour-a-day crisis intervention,
case management, and outpatient services, such as substance abuse
services, counseling, and treatment. The centers must also offer
residential services, day treatment, family support services, and
medication evaluation and monitoring. The centers also provide supported
employment services; the state estimates that more than 1,200 people
have been helped to find jobs from 1999 to 2003.

#### Residential Options 

"...if development of new housing initiatives is not aggressively
pursued," said the Governor's Commission on Home- and Community-Based
Services, "the State is likely to find itself in the position of having
developed a plethora of new service options yet have no consumers to
utilize them."[^908] Giving people with disabilities options to live in
the community in small residential settings rather than in institutions
has been a major challenge for Indiana. For example, the national
average for individuals with MR/DD living in settings of six people or
fewer was 61 percent in 2000; in Indiana, the rate was only 44
percent.[^909]

In the 1970s, Indiana created two state-funded programs, Assistance to
Residents in County Homes and the Room and Board Assistance Program for
residents of board and care facilities. These programs subsidize the
difference between a resident's income and the state-approved daily rate
for a county home or a licensed residential care facility. In 1992, the
two programs came under the authority of the DDARS, and in 2000 merged
into the Residential Care Assistance Program (RCAP).

In 2003, there were 19 county homes and 42 licensed board and care
homes. In addition to providing financial assistance for room and board,
the program offers residents a personal needs allowance (\$52 a month in
2003) and medical assistance. About 2,500 people were in the program at
the end of FY 2003; these are people who cannot live independently but
who do not need nursing home level of care. They must be financially
eligible for Medicaid or SSI. Total expenditures for the program were
about \$14 million in FY 2003.[^910]

Of the 3,700 households receiving housing assistance through Indiana's
Housing Choice Voucher Program (Section 8) rental assistance program in
FY 2001, two-thirds had an elderly or disabled family member. In that
year, however, 7,000 households were on the preapplication list waiting
for assistance.[^911]

Another project that attempts to create opportunities for people with
disabilities to own or rent homes is the Back Home in Indiana Alliance.
The state has funded the project through the Indiana Housing Finance
Authority and the Governor's Planning Council for People with
Disabilities The alliance is a coalition of various organizations that
includes Fifth Third Bank, Irwin Mortgage, the Indianapolis Neighborhood
and Housing Partnership, Indianapolis Resource Center for Independent
Living, and Independent Residential Living of Central Indiana. Also
involved are Fannie Mae and HUD.[^912]

The project, which is housed in Indiana University's Institute on
Disability and Community, connects people with disabilities and their
families to housing organizations and resources. A preliminary financial
assessment is conducted; potential clients must have incomes at or above
30 percent of the local median income. If the applicant meets this
standard, he or she is directed to a homeownership counseling and
educational organizations that will provide information about low-cost
lending and the steps an applicant must take. Alliance staff say that
the key factor sustaining this project is "the development of
partnerships with organizations experienced in housing, advocacy, and
supporting people with disabilities."[^913]

Indiana has also created two other housing possibilities for people with
disabilities in recent years. The state submitted an application to the
Federal Government for a Medicaid Assisted Living Waiver that was
approved in July 2002. By FY 2004, the program was serving 70 people,
with 36 people on a waiting list. The Aged and Disabled Waiver was
amended to include a new congregate care option that was approved by the
Federal Government in 2003.

#### Workforce Issues

In 2001, the General Assembly authorized the creation of a Governor's
Commission on Long Term Caregivers. The mandate of the commission, which
began meeting in 2002, was to review information and data related to
long-term caregivers; evaluate the adequacy of the state's training
programs; and make recommendations to increase the supply of certified
nurse aides, licensed practical nurses, and registered nurses in health
facilities, home health care, and other community-based settings. The
commission made a number of recommendations to strengthen education and
training opportunities for direct care workers, improve workplace
conditions, and develop recognition programs for the workers.[^914]

In 2002, the General Assembly enacted a bill that permits certain
individuals who are not licensed health care professionals to provide
health-related services to people receiving in-home care under the
CHOICE program and the Medicaid HCBS waiver programs. The workers are
called personal services attendants. The DDARS was charged with
developing a registry of these workers.

#### Consumer Direction

A key recommendation of the Governor's Commission on Home- and
Community-Based Services was that all applicable Medicaid waiver
programs "should include and implement the consumer-directed care
service option."[^915] Although 2001 legislation had given recipients of
CHOICE the option of directing their attendant care services workers,
only 140 program participants were exercising that option in 2004.

The state requested an amendment to the Aged and Disabled Waiver in
November 2001 to allow self-directed attendant care, which was approved
by the Federal Government in January 2002. Indiana applied for and was
awarded a \$1.4 million Real Choice Systems Change Grant in 2002 to
develop systems that support consumer choice and consumer-directed care.
Another \$725,000 federal grant that year for community personal
assistance services and supports calls for the development of a pilot
model of self-directed care based on the work of three local coalitions.
The coalitions are to include an Area Agency on Aging, an Independent
Living Center, a nursing home, and other support providers and advocacy
groups. The goal of the project is to develop a system whereby
self-directed personal attendant care "is a realistic and accessible
service for any individual who chooses to live in the community."[^916]

The FSSA noted in 2004 that efforts to expand self-directed care had
been complicated by fiscal intermediary issues. The Area Agencies on
Aging administer CHOICE and the Aged and Disabled Waiver programs. The
Area Agencies on Aging reported concerns about how they would handle
their fiscal intermediary responsibilities and about how to limit their
liability regarding "employer of record" issues.[^917] However, the
state was moving ahead in mid-2004 to issue a request for proposals for
an organization to serve as fiscal intermediary.

#### Innovative Practices

Indiana has been a pioneer in two very different directions for
expansion of LTSS. Through the actions of a broad-based commission on
HCBS, bolstered by gubernatorial and legislative support, the state has
put into place, in effect, a graduated schedule of reforms that should
enable it to keep its reform momentum going even in the face of tough
fiscal times. At the same time, the state has managed to develop and
strengthen a state-funded home- and community-based program that has
strong and continuing support from the political and advocacy
communities.

***Governor's Commission on Home- and Community-Based Services:*** The
commission called its report with its comprehensive series of
recommendations "a blueprint for reform in Indiana." Mindful of the
state's tight fiscal situation at the time, but also because of the
"opportunities presented by the upcoming legislative session," the
commission said it tried to frame many of its initial recommendations in
terms of achievable results. For example, in its December 2002 Interim
Report, the commission said it proposed to identify the "most
significant of the long-term care service delivery barriers and to
develop comprehensive recommendations in response."[^918] Taking note of
this strategy, NCD said in September 2003 that the commission's "effort
to prioritize activities that could begin immediately and at little
short-term cost is exemplary and should serve as a model for other
states."[^919]

One such immediate activity with little short-term cost was pursuing
federal grant opportunities. The FSSA lost no time in applying for such
grants and reported that it received a total of \$6.4 million in FY 2002
and FY 2003, mostly from the Real Choice Systems Change Grant program
under the New Freedom Initiative. One \$1.4 million federal grant helped
to create and staff the Governor's Commission and also went toward the
distribution of mini-grants to communities around the state to stimulate
creative community thinking about independent living for people with
disabilities. The state awarded \$430,000 to 12 communities in February
2003 and another \$320,000 to 11 communities in May 2003 in mini-grants
of up to \$40,000.

Projects were to encourage innovation in community living, housing,
transportation, supported employment, and caregiver support. Activities
funded through the mini-grants include, for example, training for
Indianapolis housing suppliers and consumers to increase the
availability of community-based housing for people with disabilities,
support for Bloomington's continuum of services for adults with
developmental disabilities and/or mental illness, and the development of
resources in New Palestine that enable homeowners with disabilities to
access home repair or modification services.[^920]

Other commission recommendations also saw quick action by the state,
such as implementing spousal impoverishment provisions in the Aged and
Disabled Waiver program similar to the provisions applicable to nursing
home care.[^921] A waiver amendment to allow this action was approved by
the Federal Government in February 2003. (For additional information on
commission proposals and subsequent state actions, see Appendix 4.A.)

One major commission recommendation (i.e., to raise the monthly income
standard for the Aged and Disabled Waiver program to 300 percent of
SSI), however, proved to be more problematic because of cost concerns.
An initial state estimate of the additional first-year cost of the
change was \$2.7 million. FSSA contracted with the Lewin Group to
conduct a more comprehensive analysis of the fiscal impact of this
proposed change and the addition of 20,000 waiver slots mandated by S.B.
493. The report was due by November 2004.

The commission also established Benchmarks for Measuring Success for
each of its recommendations. For example, for the Adult Foster Care
Medicaid waiver program, the benchmarks included implementation of the
program, development of an adult foster care consumer base (with the
number of consumers increasing each quarter), and development of an
adult foster care provider base (with the number of providers increasing
each quarter). However, the commission expired at the end of 2003,
leaving open to question how monitoring would be conducted in the
future.

***CHOICE:*** Although many states offer limited state-funded services
for people whose low incomes still do not qualify them for
Medicaid-funded services, Indiana has a 12-year-old comprehensive
state-funded program that continues to be popular not only with
consumers and advocates but also with legislators and other
policymakers. The CHOICE program has lasted through tough fiscal times
and continues to gain strength.

The CHOICE program has received national recognition since its inception
in the late 1980s, largely because it fills a gap for low-income people
who are not eligible for or are waiting for Medicaid services. People
must be at least 60 years of age (or any age with disabilities) and
unable to perform at least two ADLs as determined by an assessment.

There are no financial eligibility requirements for CHOICE. However,
cost-sharing on a sliding fee scale is required of people with annual
incomes between 150 percent and 350 percent of the federal poverty
level. People with incomes below 150 percent of the poverty level are
not required to pay for services; people with incomes above 350 percent
must pay the entire cost of their services.

Covered services include case management, home health supplies and
services, attendant care, homemaker services, respite care,
home-delivered meals, adult day care, transportation, minor home
modifications, adaptive aids and devices, and other necessary services.
The program is operated locally by Area Agencies on Aging. At least 20
percent of an Area Agency on Aging's CHOICE service dollars must be used
for people under the age of 60 with disabilities.

#### Future Plans and Challenges

Although Indiana still has many challenges to face to overcome its
earlier bias toward institutionalization, the state has made
considerable progress in recent years in offering many more people with
disabilities the option of living independently in the community. The
strides made in the last two to three years are impressive compared with
the state's past record in providing home- and community-based options
for people with disabilities. The state-funded CHOICE program continues
to receive strong ongoing support from public officials.

The executive and legislative branches of the Indiana government have
shown a convincing commitment to continuing this forward movement. In
2003, the state set a goal of creating community options for 1,000 more
seniors and 1,000 more people with disabilities over two years.[^922]
Several federal grants are helping to keep the momentum going, and local
efforts supported by mini-grants should help develop new initiatives.

Representative Peggy Welch, vice chair of the Assembly Public Health
Committee, says that "implementing what we've got and how to pay for it"
is a major challenge for lawmakers. Legislators are committed to
expanding home- and community-based care, she says, but they worry about
the short term. "We seem to be improving our economic status," she says,
but FY 2005 "will be a tough budget year."

Another key stakeholder, Beth Quarles, chair of the Indiana Independent
Living Center, is concerned that no group is charged with monitoring
activities that have been recommended by the Governor's Commission. "We
need a group to conduct follow-up reviews," she says, and to distribute
results to stakeholders around the state. Federal or state money needs
to be invested in that follow up, she adds.

## Attachment 4.C Selected Recommendations of the Governor's Commission on Home- and Community-Based Services 

The status of some of the commission recommendations was provided by
FSSA secretary Cheryl G. Sullivan in a November 10, 2003, letter to
commission chair Katie Humphreys. Secretary Sullivan said that "in
prioritizing its efforts and commitment given available resources," all
18 of the commission's recommendations that were directed to FSSA could
not be accomplished within the commission's proposed time frame.

-   *Implement a diversion project that presents consumers with real
    alternatives to nursing home placement.* FSSA worked with Area
    Agencies on Aging (AAAs) to provide discharge planners in hospitals
    to offer consumers community alternatives to nursing home care. In
    addition, FSSA worked with the AAAs, Independent Living Centers, and
    the Nursing Home Coalition to fund two separate conversion team
    projects to work with families in moving individuals from nursing
    homes. The agency hoped to pilot the project in other parts of the
    state. As of March 2004, there had been 780 diversions (people who
    chose alternatives to nursing home care) and 60 conversions (people
    who left nursing homes for home and community settings).

-   *Reduce to 20 days the time involved in determining Medicaid
    eligibility and in initiating services.* Applicants must often wait
    months, the commission said, for the process to be completed. The
    process had been reduced to 39 days and, as of August 2003, the
    agency had established a centralized Medicaid financial eligibility
    determination unit.

-   *Develop the infrastructure for a consumer-directed program that
    includes policies for fiscal intermediary services; information,
    education, and training for consumers, workers, and providers; a
    training curriculum for case managers; and a marketing plan.* FSSA
    received a \$725,000 Systems Change Grant in 2002 to expand
    consumer-directed personal attendant care under the Aged and
    Disabled Waiver. The state has developed a Consumer Manual and an
    Attendant and Case Management Manual available for use
    electronically and in print versions.

-   *Add Adult Foster Care as a service to the Aged and Disabled Waiver
    program.* FSSA said that Adult Foster Care was a service component
    of the waiver and explained how the agency was working to expand the
    service. FSSA had finalized Foster Care Certification Standards, and
    was working on outreach for the program. The agency said quality
    assurance "would be a major challenge" as the program expanded, but
    it had applied for and received federal grant funding to "enhance
    the infrastructure" for quality assurance.

-   *Fully and immediately develop the Assisted Living Waiver.* The
    program had been funded since July 1, 2001, but had signed up few
    providers. The secretary reported that the agency had hired a
    manager to specifically direct this program in early 2003. After
    that, FSSA developed new application materials and a marketing
    presentation for the program. The agency presented the material at
    the annual conference of the Indiana Association of Assisted Living
    Facilities as well as at three regional meetings. FSSA also reported
    having engaged in discussions with two major assisted living
    providers and public housing authorities in three areas.

-   *Expand Adult Day Services efforts.* FSSA said it continued to
    increase community-based options and had 42 certified sites to
    provide Adult Day Services. Because of increased marketing, the
    agency said, it was receiving on average three contacts per week of
    entities interested in becoming providers of these services. FSSA
    said it was "working closely" with the Indiana Association of Adult
    Day Services in providing technical assistance for new providers.

## Part III Conclusion

Key shared features of the movement forward by the five selected states
are (1) an ongoing intensive planning process that involves policymakers
with all critical stakeholders, (2) organization changes in the
management of budget and service delivery, and (3) a focus on expansion
of consumer choices to respond to individualized needs.

**The planning process.** A number of factors combine to make for an
effective planning process:

-   A comprehensive endeavor that involves a full range of
    stakeholders---from state officials to providers to advocates and
    people with disabilities themselves---and the commitment and support
    of the governor and legislature.

-   Final plans with realistic recommendations that take into account
    the state's fiscal situation but also take advantage of available
    federal money, develop community partnerships, and implement
    cost-limited regulatory changes.

-   The setting of benchmarks to measure results and to place
    responsibility for tracking and reporting the results to
    policymakers and the public.

**Structural changes.** Although it is difficult for states to quantify
the impact of merging and consolidating state agencies, state officials
believe that services can be delivered more effectively and efficiently
after such moves. They also argue that combining nursing home and home-
and community-based dollars means that they can allocate funds according
to the needs of people with disabilities rather than to cost centers.

Consolidation at the state level also means local-level changes that can
make access to services easier for consumers and that simplify and speed
the application process. There is also a trend toward establishing
single-point-of-entry systems at the local level that has been adopted
by many states and encouraged through federal grants to make for easier
access to LTSS.

**Global budgeting.** States are hampered in expanding HCBS by budgeting
practices that maintain separate line items for nursing homes and HCBS
and by separate funding sources, such as Medicaid, Older Americans Act
funds, and state general revenues, which are often administered by
separate agencies. Several of the study states have developed strategies
to use savings from limiting nursing home use or to transfer dollars
that were previously allocated to nursing homes to people who move from
those institutions to community settings.

The most far-reaching approach, however, has been to budget for both
institutional care and HCBS within the same agency and to tap pooled
funds to meet care needs in any setting. Called "global budgeting" by
some policymakers, this practice allows states the flexibility to
respond to the preferences of people with disabilities to remain at home
or in the community.

**Broadening home- and community-based services.** Allowing greater
numbers of people with disabilities the opportunity to direct their own
care (hiring, training, and supervising their workers) has become a
major objective not only of the five selected states but of many other
states as well. Federal grants are helping many states consider how to
educate consumers about the option, provide them with training, and set
up fiscal intermediaries to assist consumers with bookkeeping and
taxpaying. The selected states are also using the Medicaid waiver
amendment process to broaden benefits, help more people, and provide
services in a variety of residential settings.

What each of these five states has accomplished provides lessons to be
learned for future policy development at the state and federal levels.
An analysis of activity across the five selected states resulted in the
identification of 10 findings that will help inform the design of the
21st century LTSS system:

1\. Response to the *Olmstead* decision stimulated executive and
legislative review of the current system of service delivery, unmet
needs of target populations, and where the dollars are being expended.

2\. Cross-agency planning with consumer stakeholder voice was included
as part of the process to develop recommendations for systems reform.

3\. Structural changes have involved substantial reorganization to an
umbrella department for multiple target populations with LTSS needs.

4\. Change in structure has given emphasis to streamlining eligibility
determinations, improving access to information for consumers, and
rebalancing funding between community and institutional settings.

5\. All five states have embraced principles of self-determination with
varying degrees of choice and control. This has led to expanded
opportunity for greater numbers of people to manage and direct support
and service plans with the assistance of service brokers/coordinators
and fiscal intermediaries.

6\. The states continue to expand their use of Medicaid waivers to
broaden benefits and long-term services to subpopulations.

7\. All five states have encountered federal policy barriers that
restrict their flexibility, increase their costs, and reduce capacity to
meet individual needs at home or in the least restrictive settings. The
most restrictive policy most frequently identified was the Medicaid
institutional bias.

8\. There remains confusion in the use of language regarding long term
care and long term supports and services. The traditional term has been
"long-term care." Long-term care is the more frequently used term to
describe needs that include personal assistance with daily living
activities through nursing facility services and home care. The
confusion often is a result of the medically oriented funding base of
the primary funding stream (Medicaid), which covers a range of LTC
services, including institutional and community-based services. Medicaid
community-based services include personal care, targeted case
management, home health, transportation, habilitation, and home
modifications. The language being used is not keeping up with the
philosophy as the pace of change varies across states.

9\. All selected states have waiting lists for specific target
subpopulations, even though states may limit services and operate the
waiver on less than a statewide basis.

10\. Current budget challenges at the state level have compelled states
to reexamine the balance between public and private responsibility for
LTSS, evaluate approaches to target individuals based on an assessment
of level of need, and seek to identify strategies that encourage
coverage of supports through some type of insurance coverage and other
private sector resource sharing.

# Appendix 4.A Stakeholders Interviewed for State Case Studies 

-   State Senator Linda Berglin, Chair, Minnesota Health and Human
    Services Budget Committee

-   Pat Casanova, Director of Waiver Services, Indiana Division of
    Disability, Aging, and Rehabilitation Services

-   Cathy Cochran, *Olmstead* Coordinator, Washington State Department
    of Social and Health Services

-   Bernard Dean, Senior Fiscal Analyst, Washington State House
    Appropriations Committee

-   Melissa Durr, Executive Director, Area Agency of Aging; Chair,
    Hoosiers for Options (represents the major long-term care
    stakeholders in Indiana)

-   Patrick Flood, Commissioner, Vermont Department of Aging and
    Independent Living

-   Marc Gold, Director, Texas Medicaid Long-Term Care Policy

-   Emily Hancock, Director of Long-Term Care, Indiana Office of
    Medicaid Policy and Planning

-   Brendan Hogan, Director of Long-Term Care Services, Office of
    Vermont Health Access

-   Adelaide Horn, Deputy Director, Texas Department of Aging and
    Disabilities

-   Katie Humphreys, Consultant, Health Evolutions; Chair, Indiana
    Governor's Commission on Home- and Community-Based Services; Former
    Secretary, Family and Social Services Administration

-   Lois Johnson, Chair, Minnesota Independent Living Center

-   Steve Kappel, Associate Fiscal Analyst, Vermont Joint Fiscal Office
    of the Legislature

-   LaRhae Knatterud, Planning Director for Aging Initiatives, Minnesota
    Department of Human Services

-   Debra Leese Baker, Executive Director, Vermont Independent Living
    Center

-   Kathy Leitch, Assistant Secretary, Aging and Disability Services
    Administration, Washington State Department of Social and Health
    Services

-   Steve Lerch, Senior Research Economist, Washington State Institute
    for Public Policy

-   Kathy Norris, Senior Fiscal and Program Analyst, Office of Fiscal
    Management Analysis, Indiana Legislative Services Agency

-   State Representative Pat O'Donnell, Vermont Appropriations Committee

-   Beth Quarles, Chair, Indiana Independent Living Center

-   State Senator Pat Thibaudeau, Ranking Member of the Washington State
    Health and Long-Term Care Committee

-   State Representative Peggy Welch, Vice Chair, Indiana Public Health
    Committee

-   Peter Youngbaer, Executive Director, Vermont Coalition on Disability
    Rights; former state legislator

# 

# Chapter 5

# Moving Forward: Local and Individual Strategies for 21st Century Long-Term Services and Supports: Financing and Systems Reform for Americans with Disabilities 

##   {#section-38 .unnumbered}

## Table of Contents Chapter 5

**Page**

**Part I**

**Introduction** 439

**Part II**

**Conclusion** 486

##   {#section-39 .unnumbered}

## Part I Introduction 

At the individual, family, and community levels, the public and private
sectors are working together to design new strategies to provide
accessible, affordable long term services and supports to meet the needs
of individuals with disabilities and people who are aging. Criteria used
to identify promising practices included the documentation of (1)
alternative financing approaches or relationships; (2) support of
consumer choice and direction; (3) nontraditional housing and service
delivery models that expand supply and access; (4) response to workforce
quality and retention challenges; (5) support of family caregivers; (6)
promotion and preservation of resources and assets; and (7) replication
potential.

Each of the highlighted initiatives builds on strengths of partnerships
at the local level and offers the target audience expanded choices for
community inclusion and participation. None offer comprehensive
solutions to the challenges of meeting LTSS needs in the future.
However, similar to the profiled state experiences, each highlighted
strategy offers policymakers additional possibilities for inclusion in a
more comprehensive systems approach to LTSS needs in the future.

The following table provides an overview of the selected local or
individual strategies that realign service and financial relationships.
For each initiative, the table includes a brief description, what can be
learned from the implementation of the strategy, and program contact
information.

Table 5.1. Selected Local and Individual Strategies

+-------------------------+----------------+--------------------------+
| **Worker                |                |                          |
| Cooperatives---Waushara |                |                          |
| County, Wisconsin**     |                |                          |
+-------------------------+----------------+--------------------------+
| **Description**         | **What Can Be  | **Contacts**             |
|                         | Learned**      |                          |
+-------------------------+----------------+--------------------------+
| The home care worker    | Response to    | Kathleen McGwin,         |
| co-op helps about 82    | workforce      | Executive Director       |
| individuals who are     | issues of low  |                          |
| elderly and/or who have | pay and poor   | Cooperative Care         |
| disabilities live       | retention.     |                          |
| independently in their  | Different      | PO Box 620               |
| own homes. The 74       | approach to    |                          |
| worker-owner members    | organize       | 402 E. Main Street       |
| now enjoy higher wages, | service        |                          |
| workers compensation,   | delivery.      | Wautoma, WI 54982        |
| health insurance, and   |                |                          |
| profit sharing. Was a   |                | Phone: 920-787-1886      |
| finalist this past year |                |                          |
| in the Harvard          |                | <mcgwin@co-opcare.com>   |
| "Innovations in         |                |                          |
| American Government"    |                | <http://co-opcare.com/>  |
| award. The U.S.         |                |                          |
| Department of           |                |                          |
| Agriculture is looking  |                |                          |
| at replication with     |                |                          |
| planning grants to      |                |                          |
| projects in Hawaii,     |                |                          |
| Washington, Colorado,   |                |                          |
| and Nebraska.           |                |                          |
+-------------------------+----------------+--------------------------+
| **Time Banks/Time       |                |                          |
| Dollars---Washington,   |                |                          |
| D.C.**                  |                |                          |
+-------------------------+----------------+--------------------------+
| **Description**         | **What Can Be  | **Contacts**             |
|                         | Learned**      |                          |
+-------------------------+----------------+--------------------------+
| Time Banks are based on | Provides a way | Time Dollar Institute    |
| the concept of people   | for            |                          |
| using their time as     | individuals    | 5500 39^th^ Street, N.W. |
| money. Communities that | with time to   |                          |
| are "cash-poor, time    | give, but      | Washington, DC 20015     |
| rich," are able to      | little income, |                          |
| trade their time        | to get the     | Phone: 202-686-5200      |
| providing each other    | services they  |                          |
| with valuable services  | need. The      | <contact@timedollar.org> |
| to benefit people with  | elderly and    |                          |
| disabilities and        | individuals    | [http:/                  |
| families. The system is | with           | /www.timedollar.org](htt |
| based on equality: one  | disabilities   | p://www.timedollar.org/) |
| hour of help means one  | are able to    |                          |
| Time Dollar.            | secure         |                          |
|                         | personal       |                          |
|                         | assistance,    |                          |
|                         | shopping, and  |                          |
|                         | other support  |                          |
|                         | services they  |                          |
|                         | may need. They |                          |
|                         | are also able  |                          |
|                         | to offer       |                          |
|                         | services       |                          |
|                         | themselves on  |                          |
|                         | behalf of      |                          |
|                         | people with    |                          |
|                         | similar        |                          |
|                         | challenges.    |                          |
+-------------------------+----------------+--------------------------+

+-------------------------+----------------+--------------------------+
| **Together We Can---New |                |                          |
| York City**             |                |                          |
+-------------------------+----------------+--------------------------+
| **Description**         | **What Can Be  | **Contacts**             |
|                         | Learned**      |                          |
+-------------------------+----------------+--------------------------+
| One of two approaches   | Response to    | Jim Gray, Vice President |
| to affordable housing   | unmet critical |                          |
| that offer              | need for       | Together We Can          |
| nontraditional choices  | affordable     |                          |
| to individuals with     | housing        | NCB Development          |
| disabilities with       | without being  | Corporation              |
| limited income.         | locked into    |                          |
| Together We Can offers  | specific       | 1725 Eye Street, N.W.,   |
| affordable cooperative  | service menu   | Suite 600                |
| living with limited     | or provider.   |                          |
| equity shares to keep   |                | Washington, DC 20006     |
| prices well below       |                |                          |
| market rate.            |                | Phone: 202-336-7642      |
|                         |                |                          |
|                         |                | <jgray@ncbdc.org>        |
|                         |                |                          |
|                         |                | <http://www.ncbdc.org/>  |
|                         |                | (The link can be found   |
|                         |                | under "Affordable Co-op  |
|                         |                | Housing.")               |
+-------------------------+----------------+--------------------------+
| **No Place Like Home    |                |                          |
| Com                     |                |                          |
| munities---Robbinsdale, |                |                          |
| Minnesota**             |                |                          |
+-------------------------+----------------+--------------------------+
| **Description**         | **What Can Be  | **Contacts**             |
|                         | Learned**      |                          |
+-------------------------+----------------+--------------------------+
| One of two approaches   | Response to    | Emily Fuerste, Executive |
| to affordable housing   | unmet critical | Director                 |
| that offers             | need for       |                          |
| nontraditional choices  | affordable     | No Place Like Home       |
| to individuals with     | housing        | Communities              |
| disabilities with       | without being  |                          |
| limited income. No      | locked into    | 4101A West Broadway      |
| Place Like Home         | specific       |                          |
| Communities offers      | service menu   | Robbinsdale, MN 55422    |
| homeownership and       | or provider.   |                          |
| subsidized rental       |                | Phone: 763-537-0170      |
| options within a        |                |                          |
| rehabilitated           |                | <info@nplhc.org>         |
| multifamily development |                |                          |
| that also includes a    |                | [http://www.nplhc.org    |
| range of supportive     |                | ](http://www.nplhc.org/) |
| services.               |                |                          |
+-------------------------+----------------+--------------------------+
| **Self-directed Support |                |                          |
| C                       |                |                          |
| orporation---Baltimore, |                |                          |
| Maryland**              |                |                          |
+-------------------------+----------------+--------------------------+
| **Description**         | **What Can Be  | **Contacts**             |
|                         | Learned**      |                          |
+-------------------------+----------------+--------------------------+
| A Microboard designs    | Different      | Jackie Golden            |
| supports for one person | approach to    |                          |
| as an alternative to    | service        | Inclusion Research       |
| traditional long-term   | delivery and   | Institute                |
| care providers. The     | consumer       |                          |
| Board members of a      | direction.     | 1010 Wisconsin Avenue,   |
| legal nonprofit         |                | N.W.                     |
| corporation make a      |                |                          |
| personal commitment to  |                | Suite 340                |
| the individual with a   |                |                          |
| disability to assist    |                | Washington, DC 20007     |
| with person-centered    |                |                          |
| planning. It is         |                | Phone: 202-338-7253      |
| recognized by the state |                |                          |
| as the employer of      |                | <jlgolden@comcast.net>   |
| record to provide or    |                |                          |
| purchase support        |                | [http://www.inclusion    |
| services for the        |                | research.org](http://www |
| individual.             |                | .inclusionresearch.org/) |
+-------------------------+----------------+--------------------------+

+-------------------------+----------------+--------------------------+
| **Pooled                |                |                          |
| Trust---Bedford, New    |                |                          |
| Hampshire**             |                |                          |
+-------------------------+----------------+--------------------------+
| **Description**         | **What Can Be  | **Contacts**             |
|                         | Learned**      |                          |
+-------------------------+----------------+--------------------------+
| Pooled Trusts provide   | Financial      | Enhanced Life Options    |
| an efficient and        | service that   | Group                    |
| economical way to have  | offers         |                          |
| trust funds             | responsible    | 15 Constitution Drive,   |
| administered for people | decision       | Suite 169                |
| with disabilities that  | making and     |                          |
| will supplement the     | protection of  | Bedford, NH 03110        |
| benefits offered by     | assets to      |                          |
| public programs. The    | remain         | Phone: 603-472-2543      |
| assets placed in trust  | eligible for   |                          |
| by parents or others    | means-tested   | <contact@elonh.org>      |
| are allocated to a      | government     |                          |
| separate subaccount.    | benefit        | <http://www.elonh.org/>  |
| The assets from all     | programs.      |                          |
| subaccounts are pooled  |                |                          |
| together to invest and  |                |                          |
| manage as one larger    |                |                          |
| amount.                 |                |                          |
+-------------------------+----------------+--------------------------+
| **Child Trust           |                |                          |
| Fund---United Kingdom** |                |                          |
+-------------------------+----------------+--------------------------+
| **Description**         | **What Can Be  | **Contacts**             |
|                         | Learned**      |                          |
+-------------------------+----------------+--------------------------+
| Through the Child Trust | A similar      | Child Trust Fund Office  |
| Fund, each child born   | strategy with  |                          |
| in Great Britain from   | restricted use | Waterview Park           |
| September 2002 is       | of funds for   |                          |
| eligible to receive     | children       | Mandarin Way             |
| government funds for    | determined to  |                          |
| the purpose of opening  | have a certain | Washington, NE38 8QG,    |
| an account that matures | level of need  | United Kingdom           |
| at age 18. Families     | for future     |                          |
| below the poverty level | long-term      | Phone: 08453-021470      |
| will receive an         | supports and   |                          |
| additional allocation   | services might | <childtrustf             |
| of funds double that of | be evaluated   | undoffice@ir.gsi.gov.uk> |
| other children at       | as an          |                          |
| birth.                  | alternative    | <                        |
|                         | (supplemental  | http://www.childtrustfun |
|                         | or             | d.gov.uk/Homepage/fs/en> |
|                         | complementary  |                          |
|                         | financing      |                          |
|                         | strategy to    |                          |
|                         | current        |                          |
|                         | college 529    |                          |
|                         | plans or       |                          |
|                         | individual     |                          |
|                         | retirement     |                          |
|                         | accounts).     |                          |
+-------------------------+----------------+--------------------------+

### Worker Cooperatives---Waushara County, Wisconsin

#### Background

Many individuals who require long-term supports and services (LTSS) may
only need assistance with such activities as dressing, bathing, feeding,
shopping, meal preparation, and housework to allow them to live
independently in their own homes. Research suggests that home care
maintains the recipient's dignity and independence. The supports and
services that home care workers can provide to these individuals allow
them to remain in their homes, providing them with a preferred
alternative to a nursing home or other facilitated care setting. In
addition to helping to maintain a person's dignity and independence,
in-home care is much more cost-effective than institutional care.[^923]
Research also clearly documents that the demand for home care will only
increase as the population ages, especially as the baby boom generation
nears retirement. By 2030, one in five Americans will be over the age of
65. In many rural areas, the elderly already have reached this critical
mass. Home care providers have traditionally been a key factor in
helping people continue living in their own homes and not going into a
nursing home. While this in-home, direct care services model has helped
save counties and states money, it has also stretched limited financial
resources.

Despite the growing demand and cost-effectiveness of in-home care, there
is a serious shortage of home care workers. Low wages and lack of
benefits provide a disincentive for people to enter into this
profession. Turnover within the industry is very high---between 40 and
60 percent annually---and in a tight labor market, individuals can
easily work in less stressful retail or service industries for similar
wages.

Like many counties in the state of Wisconsin, Waushara County has
struggled to find enough appropriate direct care providers for its
elderly and disabled populations. Waushara is one of the state's poorer
counties and it is also rural, which forces home care workers to drive
significant distances between clients. The county's economic status, low
wages for home care workers, lack of benefits, and rural nature made
finding and keeping direct care providers a challenge.[^924]^,^ [^925]
Prior to the creation of Cooperative Care, Waushara County Department of
Human Services (DHS) developed the In-Home Providers Program to serve
the rural elderly and individuals with disabilities. For more than 20
years, DHS paired homemaker and personal care providers with low-income
adults with disabilities and frail elderly residents who qualified for
state-funded programs or Medicare. In this arrangement, care providers
were not county employees, but rather considered domestic workers hired
by the service recipient and paid by a third-party fiscal intermediary;
that is, the client was the actual employer, but the county was the
fiscal intermediary. The county was charged with handling the payroll
and all other financial details, as well as scheduling worker home
visits, providing employee background checks, and helping clients find
in-home service providers.

This arrangement stretched limited public resources and left care
providers without workers compensation and benefits. Compounding the
situation, state and federal funding did not keep pace with
cost-of-living expenses, resulting in lower-than-average wages. In
Waushara County, this posed a potential liability because another rural
Wisconsin county with a similar arrangement had recently been sued to
cover medical costs incurred by a caregiver's injury on the job. Despite
the existence of a third-party fiscal intermediary, the Internal Revenue
Service (IRS) has ruled that counties in this arrangement are the true
employers and therefore liable for workers compensation and payroll
reporting.

Lu Rowley, director of Waushara County's DHS, recognized that the
delivery of home care services, which allowed the low-income elderly and
individuals with disabilities to live independently in their own homes,
came at the expense of their low-income caregivers. For years, care
providers had asked the county for higher wages and benefits, but tight
budgets had prevented the director from accommodating their requests.
The DHS director heard about a co-op approach to addressing the
challenges faced by home care workers in south Bronx, New
York---Cooperative Home Care Associates (CHCA)---that pioneered the
first home care worker cooperative in the United States in 1985, and
decided to apply for a state grant to allow Waushara County to explore
utilizing the worker co-op model in a rural setting. The DHS director
felt that Waushara County could form a similar worker-owned co-op. The
county could sign a contract with the co-op to continue providing
services to its low-income elderly and disabled residents. As a private
company, the co-op could also serve counties beyond Waushara and care
for private clients. By combining public and private revenue sources, it
might be possible for a worker-owned co-op to offer much-needed benefits
and perhaps higher wages.

#### Program Description

Founded in 2001, Cooperative Care is a worker-owned cooperative in rural
Waushara County. It provides homemaker and certified nursing assistant
care to the elderly and individuals with disabilities in their homes.
Each worker-member owns a share of the cooperative and has one vote.
Workers share the cooperative's profits and sit on its board of
directors, where they help direct company policy and strategic planning.
Cooperative Care is the first such co-op in the Midwest and came
together as a result of a unique collaboration among the federal, state,
county, and private sectors. By sharing a vision and working together,
social workers, administrators, and caregivers joined together to build
an organization that has the potential to serve as a model for state
counties and direct care workers.[^926]^,^ [^927]^,^ [^928] Cooperative
Care started with an experienced workforce in desperate need of higher
wages and basic benefits. Most of the worker-owner members are
lower-income white women from a rural county with limited employment
opportunities. All are ideologically committed to home care and have
chosen to work in the field although they would earn slightly higher
wages in institutional settings. A fair percentage of the providers are
employed to care for their family members who would otherwise be
institutionalized.

Cooperative Care offers the care providers comprising its membership a
kind of organizational ownership that they had never enjoyed nor
probably even imagined. It also provides them with member benefits that
are not often found in this field of work (the lack of these benefits is
one of the key reasons why there is such high turnover). Membership in
Cooperative Care provides worker-owners with profit sharing, with each
member's share based on the number of hours worked during the past year.
Workers receive differential pay for unscheduled work and are paid extra
for filling in when a colleague misses a scheduled shift. Workers are
reimbursed for time spent traveling between clients, which is especially
important given the rural nature of the county. Workers are guaranteed a
minimum of one hour's pay for any assignments that last less than an
hour. Benefits also include nine paid holidays a year, overtime pay,
paid vacation time, and subsidized health insurance for those who work
at least 30 hours a week, as well as a flexible benefit plan, liability
insurance, and worker's compensation.

For its home care clients, Cooperative Care provides a stable,
committed, and professional workforce. For the county, it takes the
scheduling and financial management of home care workers out of the
county's hands, freeing up case managers to better focus on providing
the best social services possible.

#### Core Program Elements

##### Staffing

Cooperative Care has an executive director and a five-member
worker-owner board of directors, who are voted into office by
caregivers. Qualified worker-owner applicants must be certified home
health aides or nursing assistants, and applicants must have state
certification or be prepared to obtain it on their own. If membership is
granted, the new worker-owner pays a one-time \$50 membership fee for a
share in the co-op.

Initially, Cooperative Care was able to tap into an existing core of
providers, which required no recruiting efforts. It expanded on a
20-year-old program and thus was able to build upon strong support from
both the county and the community. Cooperative Care utilized
partnerships and collaborations on the county, state, and federal
levels. On the county level, it utilized the expertise of the director
of DHS, a nurse, social workers, and the county board. On the state
level, Cooperative Care applied for grants and used the money to hire a
local organizer and tap into resources to assist in research and
support. It utilized the services of a local nonprofit to review the
business plan and offer advice on the financial aspects of starting up
and running a co-op. At the federal level, the U.S. Department of
Agriculture (USDA) provided co-op technical assistance, co-op services
advice, and a 2004 grant/loan fund to explore other co-ops. Cooperative
Care used representatives from other co-ops to help set up the
accounting system and get advice on dealing with conflict resolution.
Finally, the University of Wisconsin Center for Cooperatives (UWCC)
provided board members with training videos, conflict resolution, legal
direction, and research.

##### Funding and Expenditures

Waushara County received a Community Options Program (COP) Community
Links grant from the state of Wisconsin to explore the feasibility of
forming a cooperative. COP is a state-funded program to provide
assessments, case plans, and community services as an alternative to
nursing home placements for all disability groups as well as the frail
elderly. A \$125,000 loan from the state bank provided the start-up
money, 20 percent of which was spent on capital expenditures. The rest
covered payroll until the cooperative achieved adequate cash flow. The
cooperative is now funded entirely by client payments (it has a contract
with the county) and its \$50 membership fees.

##### Technical Assistance

To help facilitate the co-op development process, the director of
Waushara County's DHS brought in Margaret Bau, an expert on co-ops. In
her job with the USDA Rural Development in Stevens Point, Wisconsin, Bau
had advised and helped develop numerous rural cooperatives. She knew
what was involved, how to develop a business plan, and how to structure
the governing board. The organized plan that Bau and Dianne Harrington,
a social worker and the other project coordinator, used to build
Cooperative Care mirrored the 10-step model for building a co-op
developed by the USDA.[^929]^,^ [^930]^,^ [^931] The following are the
10 steps:

1\. Hold an exploratory meeting with others who have a similar interest
and determine whether you have common needs and desire to address those
needs as a group.

2\. Select a steering committee to guide the group through the formation
process.

3\. Conduct a survey of potential members.

4\. Analyze markets for products, supplies, and services.

5\. Prepare a business plan.

6\. Incorporate the business.

7\. Adopt bylaws and select a board of directors.

8\. Find investment funds---including member investment needed to carry
out the business plan.

9\. Hire management and employees, and acquire facilities and equipment.

10\. Begin operations.

#### Lessons Learned and Accomplishments

The cooperative started with 61 caregivers in June 2001; as of December
2004, it had 74 members, with about 63 active. Of this group, all but
two are certified nursing assistants. Two members are homemaker aides.
The co-op has 82 active clients. Financially, Cooperative Care exceeded
its fiscal projections. Year-end profits for 2001 exceeded \$41,000.
After prepaying part of the business loan and setting aside funds for
capital reserves, cash patronage refunds were distributed at the first
annual meeting. Checks averaged \$440 but were as high as \$1,000, based
on the number of hours worked. At the end of the co-op's second year of
operation, net profits totaled more than \$65,000, which was distributed
to its members as retained equity and as cash payout.

Every year since its inception, worker-owners have received increases
equivalent to hourly raises per hour worked. For example, in 2002 (for
the year 2001), worker-owners received an increase of \$1.39 per hour
worked (14 percent for workers who earned \$9.75 and 18 percent for
workers who earned \$7.75/hour). In 2004 (for the year 2003),
worker-owners received an increase of \$0.58 per hour worked (6 percent
for workers who earned \$9.75/hour and 7.4 percent for workers who
earned \$7.75/hour). Harvard's John F. Kennedy School of Government
named Waushara County and Cooperative Care as one of 99 semifinalists
(out of a pool of 800 applicants) in the prestigious 2002 Innovations in
American Government Awards. Wisconsin Rural Partners named Cooperative
Care as Wisconsin's Top Rural Development Initiative for 2003.

In 2002, a survey was developed to assess the impact of the formation of
the cooperative on the satisfaction worker-members feel with their jobs.
The survey was administered in the fall of 2002. Forty-three members (69
percent) completed surveys. Analysis of survey responses indicated that
Cooperative Care members were generally and uniformly satisfied with
most aspects of their jobs. The formation of the cooperative in June
2001 seems to have had an overall positive impact on the job
satisfaction of current members. That impact is both tangible (increased
wages and access to benefits) and intangible (an increased feeling of
investment in the organization's management and well-being and a greater
sense of security and stability).[^932] In an effort to gauge consumer
satisfaction with Cooperative Care's providers, the co-op conducted a
consumer survey in the summer of 2002.[^933] The survey asked consumers
whether they were satisfied with eight different aspects of the care
they received from Cooperative Care members. Forty people responded. The
results indicated that consumer satisfaction with services performed
during the co-op's first year of operation was extremely high---an
average of 96 percent of the respondents reported they were satisfied
with each of the eight aspects of care. This suggests great satisfaction
with all facets of provider service. A ninth question asked whether the
consumer was satisfied, overall, with the services receive. Ninety-seven
percent of respondents answered yes.

The development and building of the Cooperative Care workers co-op in
Waushara County has been able to offer advantages for its workers, its
consumers, and for the county of Waushara. Worker-owners experience
personal empowerment and increased professional self-esteem; they
receive professional benefits, stability, better pay, and job
satisfaction; and they have a voice in their business and enjoy profit
participation. Because of the low turnover, consumers are receiving
consistent service from satisfied and conscientious workers. Cooperative
Care offers Waushara County a stable and dependable provider source. It
removes the operational burden from the county, as well as the potential
of IRS liability. Finally, the co-op helps the families of providers.

### Time Banks/Time Dollars---Washington, D.C.

#### Background

Time Banks are based on the concept of people using their time as money.
People build credits for time they put into voluntary activities in
providing health or social care and other worthwhile work in their
communities. Communities that are "cash-poor, time rich" are able to
trade their time, providing each other with valuable services such as
assistance for the elderly and individuals with disabilities, and family
support. The Time Bank/Time Dollar idea was developed by Edgar Cahn in
1980 when, at the age of 46, he suffered a massive heart attack.
Recuperating in the hospital and "feeling useless," he dreamed up Time
Dollars as a new currency to provide a solution to massive cuts in
government spending on social welfare. Seven years later, at the London
School of Economics, Cahn developed his theoretical explanation for why
the currency should work. He came back to the United States and started
putting service credits (not yet called Time Dollars) into operation.
Cahn described the idea as working like a blood bank or babysitting
club:

Help a neighbor and then, when you need it, a neighbor---most likely a
different one---will help you. The system is based on equality: One hour
of help means one Time Dollar, whether the task is grocery shopping or
making out a tax return. Credits are kept in individual accounts in a
"bank" on a personal computer. Credits and debits are tallied regularly.
Some banks provide monthly balance statements, recording the flow of
good deeds.[^934]^,^ [^935]

The result of this conceptualization represents a parallel economy using
time as the medium of exchange and, by doing so, making connections
between people and rebuilding a sense of trust. Time Banks create a
reciprocal relationship between people and institutions, as well as
between people and people, which ordinary volunteering finds harder to
achieve. It allows almost anybody in society, including the elderly and
individuals with disabilities, to give something back. In the Time Bank
concept, the focus shifts from people's problems to their abilities:
Time Banks focus on people's assets, what they can do. Time Dollars and
Time Banking can serve as a tool for social change.

Each local Time Bank has a broker who facilitates time exchanges and
keeps track of members' time accounts. This method is of particular
benefit to individuals with time to give but little income to get the
services they need. For the elderly and individuals with disabilities,
they are able to secure caring, shopping, sitting, and other support
services they may need. They are also able to offer services themselves,
which may be telephone or e-mail based or include other
supportive/advocacy services on behalf of people with similar
challenges. Time Banks are currently in operation worldwide.

#### Program Description

In the United States, Time Banks use a currency called Time Dollars.
Time Dollars represent a special, tax-exempt form of money that anyone
can earn by using time, energy, skills, and talents to help others. One
hour of service provided to another human being or to the community
earns one Time Dollar. A Time Dollar Exchange is formed whenever Time
Dollars are earned and spent. Anyone can earn Time Dollars through
membership in a Time Dollar Exchange. Time Dollar Exchanges use Time
Dollars in two main ways. One way is through generalized helping and the
other is through "specialized" activities that are targeted to a
specific outcome. Time Dollar Exchanges offer a way to provide social
networks that support the elderly and individuals with disabilities,
making it possible for them to live independently in their own
homes.[^936]^,^ [^937]^,^ [^938]^,^ [^939]

Time Dollars represent an alternative currency that can be used to
recognize, validate, and reward the work of people seeking to build
community. Because everyone earns Time Dollars at the same rate,
regardless of what they are able to contribute, Time Dollars measure and
reward the efforts people put in and send the message that every
individual counts in ways that money simply cannot. At the same time,
Time Dollars provide purchasing power to individuals whose contributions
are often unrecognized in the market economy. For example, they are used
to access food, clothing, computers, legal services, health care
services, housing, and rides to the store. Members of Time Dollar
organizations help each other in ways that family and neighbors have
traditionally done.

Co-Production as an idea was also developed by Edgar Cahn in 1993, in
which he worked out a theory to explain why and how Time Dollars could
so profoundly change the dynamics of social welfare programs. The
concept behind Co-Production is that all individuals, no matter how
frail, fragile, damaged, even delinquent, can feel valued for
contributions that they are able to make in their family. neighborhood,
or community. Co-Production contains a different understanding of the
role of clients and beneficiaries in that it regards all people as
assets and as co-producers of outcomes. This nonmonetary, unmeasured
sector of the economy also includes housework and efforts that go into
caring for relatives.[^940]^,^ [^941]^,^ [^942]

Cahn first used the term "Co-Production" to explain his particular
approach to training lawyers. Students at the University of the District
of Columbia School of Law are trained on the job by providing legal
support for people and communities who need it but can't normally afford
it---and this is where Co-Production comes in, because the students do
not provide their services for free. They charge out their time in Time
Dollars. The recipients of legal advice pay their bills by earning Time
Dollars themselves, either by passing on what they have learned to
somebody else or by helping out in the community in some other way.

Co-Production includes four core values: assets, redefining work,
reciprocity, and social capital. Assets as a core value recognize that
the real wealth of a society is its people. Every human being can be a
builder and a contributor. Redefining work as a core value recognizes
that work must be redefined to include whatever it takes to rear healthy
children, preserve families, make neighborhoods safe and vibrant, care
for the frail and the vulnerable, attack injustice, and make democracy
work. Reciprocity as a core value recognizes that the impetus to give
back is universal. Wherever possible, we must replace all forms of
one-way acts of helping with two-way transactions, so that "You need me"
becomes "We need each other." Finally, human beings require a social
infrastructure as essential as roads, bridges, and utility lines. Social
networks require ongoing investment of social capital generated by
trust, reciprocity, and civic engagement.

When Time Dollars are earned and spent by individuals who are elderly or
individuals with disabilities---who find they have no one to turn to
except professional caregivers for the support and help they need---then
every one of the four core values of Co-Production comes into play. All
those who earn Time Dollars are viewed as assets---their contributions
are redefined as work---the Time Dollar earned sets up an obligation on
the recipient who paid out the Time Dollar to contribute, in turn, to
someone else; and, in the process, new social networks of mutual help
and mutual trust are formed. In return for the help they receive from
professionals, clients use their own strengths to contribute to the
organization's mission, preferably by using their talents and skills to
help others. Measuring and rewarding those contributions---simply by
recognizing the effort, commitment, and worth---lifts the contribution
to the status of work and, in doing so, can transform a top-down
relationship between professionals and clients into an equal, reciprocal
one.

In communities across the country, Time Dollars as a tool and
Co-Production as an approach have enabled the people for whom the market
economy has little or no use to contribute in ways that go far beyond
volunteering.

#### Core Program Elements

##### Technical Assistance

The role of the Time Dollar USA Institute is to promote Time Dollars and
Co-Production and to nurture and nourish the network of independent Time
Dollar initiatives established by community groups, social service
agencies, local governments, community action programs, and so
on.[^943]^,^ [^944] In this role, the institute facilitates links and
exchanges of knowledge between new and well-established Time Dollar
initiatives worldwide. It offers publications and provides how-to and
learning materials, such as its Web site, workshops, and training. The
institute makes available speakers for forums, conventions, and other
public events. It developed Timekeeper software designed for use by Time
Dollar Exchanges to keep accounts for Time Dollar members and to match
providers to recipients. The software is free and downloadable from the
Web site.

#### Lessons Learned and Accomplishments

Experience using Time Dollars and Co-Production[^945]^,^ [^946] has
shown that these concepts can save money. Research at Member to Member
in Brooklyn, New York (see example below), has shown reductions in the
costs of caring for customers under the social health maintenance
organization (HMO) Elderplan. Local networks and support allow members
to care for one another, resulting in the ability to remain in their own
homes and out of nursing homes longer. Similar efficiency has been shown
in a range of other Co-Production programs. Government-funded research
in the United Kingdom has shown that rewarding individuals with Time
Dollars attracts community involvement from some of the hardest-to-reach
sections of the population, including people with disabilities. Programs
that successfully incorporate Co-Production have been praised by
participants and foundations alike for their ability to increase a sense
of local trust and safety and cross racial divides. Research has shown
over and over again that people who are active in their community are
healthier, and Co-Production promotes active engagement in families,
neighborhoods, and communities. An additional program benefit has been
the sustained involvement over time of participants. Both in the United
Kingdom and the United States, research on programs that use Time
Dollars has shown that involvement grows the longer participants have
been involved. At the New England Time Dollar Exchange Network (NETEN),
member engagement (number of hours put in by participants) leaped by 150
percent in the fifth year of membership. (See more information about the
New England Network below.)

##### Example of Time Dollars Building Co-Production: Elderplan, Brooklyn, New York

Elderplan, a social HMO in New York serving the elderly population of
Brooklyn, Queens, and Staten Island, was one of the first organizations
in the world to use Time Dollars as a method of delivering Co-Production
in its Member to Member program. Since its inception in 1987, it has
created long-term relationships that function as a supportive, extended
family for its members, many of whom would otherwise suffer from
isolation. The HMO's elderly clients are given the option of signing up
for the Member to Member Time Dollar Exchange. Enrollment in Member to
Member means that clients can receive help from other members who earn
Time Dollars for providing the help. By encouraging members to support
other members, the HMO found that health benefits extended not just to
those being supported, but also to those who were doing the helping. The
result has been a marked increase in health, a decrease in the need for
nursing home institutionalization, and a reduction in the social
isolation and depression that is known to have serious health
consequences.[^947]^,^ [^948]^,^ [^949]^,^ [^950]

Beyond the large-scale visibility and financial advantages, there are
individual savings associated with Member to Member as well. Each day
that a stay in the hospital can be shortened because of the Time Dollar
program saves Elderplan \$1,000. One avoided nursing home stay saves
\$35,000. The support, encouragement, and assistance that Member to
Member participants provide to each other also reduces the costs
incurred when medication isn't taken regularly or in the right dose, and
that same support can provide the early intervention needed to reduce
costs and risk when chronic conditions worsen. Since Member to Member's
inception, Elderplan has come to rely on the program's built-in
monitoring system to manage those costs (as well as others) effectively.
Recent research confirms that only 1 to 2 percent of customers leave
Elderplan every year when they are involved in Member to Member, whereas
the voluntary disenrollment rates for Elderplan's competitors and other
HMOs is normally between 10 and 15 percent. Research also found that
interventions regarding medications and hospitalization were
significantly lower for Time Dollar participants than for other members
of Elderplan.

Contact information:

Elderplan Member to Member\
745 64^th^ Street\
Brooklyn, NY 11220\
Phone: 718-921-7909\
Email: <customerservice@elderplan.org>\
[www.elderplan.org/programs/member_to_member.shtml](http://www.elderplan.org/programs/member_to_member.shtml)

##### Example of a Time Dollar Network: New England Time Dollar Exchange Network 

It was in late 1995 that Richard Rockefeller, the founder of NETEN
(formally known as Maine Time Dollar Network), first heard Edgar Cahn
speak about Time Dollars. Up to that point, most of Rockefeller's
philanthropy dollars had supported environmental issues. However, after
hearing Cahn speak, he realized that we cannot expect people to take
care of our environment if we are not first taking care of each other.
Rockefeller felt compelled to bring the concept of Time Dollars to Maine
and began to share his vision in 1996. In 1997, Maine hosted an
International Time Dollar Congress in cooperation with Cahn, bringing
together 40 Time Dollar programs from all over the world.[^951]^,^
[^952]

In 1998, the New England Time Dollars Exchange Network set its strategic
direction to create a model Time Dollar exchange on Portland's Munjoy
Hill and to replicate that model throughout Maine. Between 1998 and
2003, NETEN became a leader in the International Time Dollar movement.
NETEN created a successful Time Dollar exchange and began to replicate
the model in several New England communities: Portland, Brunswick,
Rockland, Lewiston, Mount Desert Island, and Millinocket, Maine;
Manchester and North Conway, New Hampshire; and Lynn, Massachusetts. Its
membership grew from 90 individuals in 1998, who exchanged 1,540 hours
of services, to a statewide membership of just under 1,000, who
exchanged 25,000 hours of services in 2003. During these five years, the
members exchanged well over 50,000 hours of services, a market economy
value of over \$800,000 (using United Way's average volunteer hourly
rate of \$16.07). NETEN hosted and mentored Time Dollar exchange groups
in the United States from Massachusetts, New Hampshire, Oklahoma,
Florida, California, Colorado, Indiana, and Pennsylvania; and around the
world from England, Scotland, Singapore, Canada, Japan, and France.

NETEN's current strategic direction is responding to and capitalizing on
the growing interest in the Time Dollar concept. The plan extends NETENs
reach from Maine to all of New England and addresses issues of capacity,
sustainability, governance, and technology. The goals through 2008
include reframing its geographic scope to include all of New England;
increasing the number of exchanges from 14 to 60; increasing the number
of members participating in exchanges from 875 to 15,000; and increasing
the number of hours exchanged from 18,000 to 300,000.

Contact information:

Auta Main, Director\
New England Time Banks\
144 Cumberland Avenue\
Portland, ME 04101\
Phone: 207-874-9868\
Email: <infomtdn@maine.rr.com>\
[www.mtdn.org](http://www.mtdn.org/)

A study conducted in 2004[^953] summarizes information collected through
30-minute, face-to-face interviews with 12 local Time Banks at the Time
Banks International Conference. The purpose of the interviews was to
begin to gather qualitative data on what is happening at the local level
so that best practices and lessons learned can be shared across the
global network. Questions focused on organizational structure,
partnerships, and sources of funds in order to look at how local Time
Banks can make more efficient use of resources and enhance
sustainability.

In terms of the sources of funds, members of local Time Banks in the
United States all rely on federal, state, and city/county dollars.
Federal sources include Americorps/VISTA, the Department of Housing and
Urban Development (HUD), National Emergency Grant, and the Substance
Abuse and Mental Health Services Administration. State sources included
the Departments of Education, Mental Health, and Social Services; and
city/county sources included public schools and county government. With
the exception of the Americorps/VISTA program, government dollars
typically go to a Time Bank that operates as part of a larger agency.
With the exception of some of the Time Banks that are part of the
network in New England, the local Time Banks are likely to have
difficulty pursing a comprehensive family/individual donor strategy
without additional support to develop the capacity to do so. All of the
Time Banks interviewed have less than 2.75 full-time enrollees (FTEs),
with most relying on the equivalent of one or less than one paid staff
member. Most do not currently have the administrative systems, staffing,
or specialized skills to build and manage a database, develop materials,
and conduct the necessary relationship-building and follow-up.

Four out of the 10 local U.S. Time Banks interviewed report doing
mini-fundraisers and hosting special events to raise money. The events
are important for community building as members typically earn Time
Dollars for organizing and staffing the fundraiser. Other costs are
covered through in-kind member contributions and local sponsors.
Agency-based Time Banks rely on their parent organization for overhead
and other resources (e.g., event space, administrative support), which
considerably reduces their need to raise cash for operating expenses
other than personnel. Well-established agencies typically have
visibility in the community, as well as partnerships and funding
relationships that can be further developed to include the Time Bank.
The challenge to being agency-based is often the need for a cultural
shift---in terms of how staff and clients interact and relate to each
other---and, as a result, the Time Banks model can be difficult to
implement effectively. None of the U.S. Time Banks interviewed reported
receiving funds from private foundations. This may reflect an
organization's stage of development, geographic area, or capacity for
foundation research, relationship-building, and grant writing. Only one
organization mentioned an effort to earn revenue by selling cookbooks
with local and outdoor cooking recipes. This initiative is in the early
stages and has not been tested.

In terms of the partnerships, members of local Time Banks in the United
States report that they have been able to marshal resources and improve
the variety of services offered to members through creative
partnerships. Partnerships are a key component of sustainability, in
terms of recruiting and retaining members, gaining visibility in the
community to attract funders, and reducing operating expenses through
exchanges. Partners will typically offer resources in kind; earn Time
Dollars, and donate them back to the Time Bank; earn Time Dollars and
spend them "hiring" members to cover staffing needs; or allow members to
purchase services in Time Dollars that normally have a cash fee. In the
latter case, members pay cash for any products that are needed to
complete the service (e.g., food for catering, bike parts for a
tune-up). Based on the interviews, the following types of partners are
emerging:

-   large organizations that rely on large numbers of volunteers,
    require minimal training, and have a standardized orientation
    process in place---examples include hospitals or local chapters of a
    national nonprofit (e.g., Red Cross);

-   small businesses, nonprofits, or local government offices with
    temporary staffing or volunteer needs that require minimal training;
    and

-   small businesses and nonprofit organizations that occasionally need
    skilled labor that is outside their area of expertise (e.g.,
    repairs, landscaping).

In terms of products, local Time Banks in the United States report that
members are exchanging Time Dollars for products, mainly by earning a
specified amount of Time Dollars and redeeming them for donated items
(e.g., computers). The obvious challenge with product Time Dollar
exchanges is pricing. It is difficult to attach a time value to a
product, and the local Time Banks are reluctant to take on the
responsibility of setting prices. Exceptions that are occurring at some
of the New England Time Banks include products that are exchanged in an
aggregate amount. For example, members of a local New England Time
Bank---Katahdin---may exchange one Time Dollar for one meal from the
daily menu at the local hospital's cafeteria. Members set their own
prices, negotiating (independent of the Time Bank) what a particular
product is worth in Time Dollars. For example, some members of a local
Time Bank---Portland---have offered items for sale to other members in
Time Dollars or in Time Dollars plus some amount of cash.

##### Time Bank Spotlight: Portland East End (Portland, Maine)

In addition to the summary of findings from the interviews with the
local Time Banks listed above, the specific outcomes of the interview
with the Portland East End Time Bank are highlighted below. The Portland
East End Time Bank operates independently as a member of the New England
Time Banks Network. It provides a good illustration of the strategies
and resources utilized to run a successful local Time Bank.

Table 5.2. The Portland East End Time Bank

+---------------------+------------------------------------------------+
| Start date          | Pilot in 1996; up and running in 1998          |
| (month/year)        |                                                |
+---------------------+------------------------------------------------+
| Membership          | Open                                           |
+---------------------+------------------------------------------------+
| Number of members   | 600+                                           |
| (as of August 2004) |                                                |
+---------------------+------------------------------------------------+
| Total FTEs          | 2.75                                           |
+---------------------+------------------------------------------------+
| Americorps/VISTA    | 1 (ABLE = program funded by AARP; 2 seniors    |
|                     | volunteer each work 20 hours/week)             |
+---------------------+------------------------------------------------+
| Sources of funds    | Individual donors (80--90 percent); AARP;      |
|                     | event sponsorship; local churches; and         |
|                     | government (federal)                           |
+---------------------+------------------------------------------------+
| Member/community    | Monthly potlucks with themes; Day of Sharing   |
| activities          | (community service); and Holiday Bazaar.       |
|                     | Fundraisers include cookie and lemonade sales; |
|                     | Tastes Around the World; and gift wrapping     |
|                     | (paper is provided by the Portland Exchange    |
|                     | and Time Dollar members do the wrapping for    |
|                     | customers shopping at local businesses).       |
+---------------------+------------------------------------------------+
| **Examples of       |                                                |
| exchanges with      |                                                |
| local organizations |                                                |
| that help the Time  |                                                |
| Bank to reduce its  |                                                |
| operating           |                                                |
| expenses**          |                                                |
+---------------------+------------------------------------------------+
| Advertising         | The local newspaper accepts 1 Time Dollar to   |
|                     | run a small ad to promote events sponsored by  |
|                     | the Time Bank. The newspaper spends its Time   |
|                     | Dollars to hire members when extra clerical    |
|                     | help is needed.                                |
+---------------------+------------------------------------------------+
| **Examples of       |                                                |
| products and        |                                                |
| services available  |                                                |
| to members through  |                                                |
| partnerships with   |                                                |
| local businesses,   |                                                |
| schools, health     |                                                |
| care providers, and |                                                |
| other nonprofits.** |                                                |
+---------------------+------------------------------------------------+
| Theater tickets     | The theater earns Time Dollars by donating     |
|                     | tickets that members can then buy with Time    |
| (Access to the      | Dollars. The theater relies on members to help |
| Arts)               | with ushering, mailings, filing, and hanging   |
|                     | posters.                                       |
+---------------------+------------------------------------------------+
| Adult education     | Members can take classes using Time Dollars.   |
| classes             | In exchange, members provide tutoring to other |
|                     | students.                                      |
| (Portland Adult     |                                                |
| Education)          |                                                |
+---------------------+------------------------------------------------+
| Physical and mental | The practice automatically receives 4 Time     |
| health services     | Dollars each month from the Time Bank. Members |
|                     | pay 2 Time Dollars per session for services.   |
| (True North)        | Members get a 10 percent discount on supplies. |
+---------------------+------------------------------------------------+
| Aikido classes      | Members can take classes for Time Dollars. In  |
|                     | exchange, the business relies on members for   |
|                     | Web site and brochure design.                  |
+---------------------+------------------------------------------------+
| Acupuncture         | On a limited basis, members can pay for        |
|                     | services with Time Dollars (the provider       |
|                     | limits the number of clients per month). In    |
|                     | exchange, the business relies on members to    |
|                     | provide catering services for open house       |
|                     | events.                                        |
+---------------------+------------------------------------------------+
| Advertising         | Members can post ads on the Time Banks Web     |
|                     | site in exchange for 1 Time Dollar. A staff    |
|                     | member scans all ads before posting.           |
+---------------------+------------------------------------------------+
| **Examples of       |                                                |
| individual member   |                                                |
| to member product   |                                                |
| exchanges**         |                                                |
+---------------------+------------------------------------------------+
| Car                 | Members post items for sale and negotiate the  |
|                     | price in Time Dollars with each other.         |
| Used furniture      |                                                |
+---------------------+------------------------------------------------+
| Homemade gifts      | At the annual Holiday Bazaar, members bring    |
|                     | homemade goods that they buy/sell for Time     |
|                     | Dollars.                                       |
+---------------------+------------------------------------------------+

### Affordable Housing

#### Background

Throughout the United States, advances in research care, corresponding
increases in frailty and cognitive impairments,[^954] and the *Olmstead*
decision are forcing states to reconfigure their LTSS systems for elders
and individuals. According to HUD's latest Worst Case Housing Needs
Report, people with disabilities make up at least 25 percent[^955]
(estimated by HUD as 1.1 million to 1.4 million people) of the
households with worst case housing needs in the United States.[^956] In
the past 30 years, states have continued to evolve their approach to
housing and related services for people with disabilities. In general,
states have moved away from an institutional model of segregated
facilities that ties together housing and service needs to a variety of
smaller community-based living options. To varying degrees, these
community living alternatives are intended to provide more choices and
independence for the targeted populations. With the authorization by
Congress in 1981 of the Medicaid home- and community-based services
(HCBS) waiver, there have been new options for states to consider in
supporting community integration. However, despite these increases,
Medicaid payment policy does not cover housing or meal costs in a home-
or community-based setting, although Medicaid does factor these costs
into payments for nursing homes. In recent years, people with
disabilities and individuals who are aging have been consistent in
articulating essential principles to frame housing choices and related
services to meet their needs. People with disabilities have pushed to
separate housing choices that are affordable and accessible from the
provision of LTSS.

According to a 2004 report by NCD,[^957] individuals with disabilities
identified that their satisfaction with their housing situation is the
primary factor for either remaining in or moving from their communities.
Satisfaction---according to this target population---depends on two key
factors: affordability and accessibility. Affordable and sustainable
homeownership is a virtue that has been embraced by housing advocates
and by the Bush Administration. Widely cited dividends resulting from
homeownership include both individual and societal benefits. While a
number of programs have extended ownership to people at increasingly
lower income levels, roadblocks continue to exist, such as rapidly
escalating housing costs---both rental and ownership, particularly in
urban environments; low credit ratings among those aspiring to
homeownership; predatory lending and the not-surprising default rate;
unanticipated postpurchase expenses; escalating monthly expenses; and
the absence of a network to support new homeowners as they confront
these challenges.[^958] Compounding the homeownership challenges faced
by individuals with low incomes is that, increasingly, affordable rental
housing is being lost as HUD-insured mortgages and low-income housing
tax credits expire, which threatens significant displacement and loss of
affordable housing units as these properties face pressure for
conversion to market-rate housing stock.

As the supply of affordable units grows increasingly tight, new sources
of affordable housing must be found: affordable homeownership
opportunities that combine support services as an option for individuals
with disabilities and the elderly.[^959] To significantly increase
homeownership rates of lower-income families in light of the rapidly
escalating cost of housing, other alternative mechanisms need to be
considered, such as multifamily structures with condominium and
cooperative ownership. Multifamily homeownership, whether it is
organized as a condominium or a cooperative, is often an entryway to
homeownership, providing ownership at a substantially lower cost than
single-family homes.

A housing cooperative is formed when people join together to own or
control the building in which they live. They form a corporation and pay
a monthly amount (maintenance fee) that covers operating expenses.
Residents buy shares or a membership in the co-op, but the cooperative
owns the building, land, and any common areas. Members pay a fixed
amount each month that covers the mortgage, property taxes, insurance,
administrative expenses, maintenance, and reserves. Costs are typically
less than either rental or single-family housing in the same
neighborhood. Cooperative housing represents a viable homeownership
alternative that provides affordable, quality living space and a number
of social benefits. Particularly in high-cost markets, cooperative
housing is an effective means for households with little savings and
limited income to achieve homeownership. Cooperatives provide residents
with the stability and opportunity to keep more of their income and to
improve their lives.[^960]^,^ [^961]^,^ [^962]

Cooperative housing offers an affordable homeownership alternative that
can lower, or at least stabilize, housing costs, especially if it is a
Limited Equity Cooperative (LEC). A LEC is created when restrictions are
placed on the resale of cooperative interests to make them affordable to
multiple generations of purchasers. Unlike properties made affordable by
programs such as the low-income housing tax credit (LIHTC) or
Mitchell-Lama, which expire after a set period of time, LECs remain as
sources of affordable homeownership in perpetuity. Like all kinds of
affordable housing, subsidies are needed to make most affordable LEC
projects feasible. Subsidies invested in cooperative housing result in
homeownership that is affordable to the tenants in residence at the time
of conversion. With the benefit of subsidy, cooperatives can be made
available to households of very low income. For example, a family
earning less than \$20,000 per year, and with as little as \$2,000 in
savings, can qualify for ownership in a cooperative.[^963]

Because cooperatives are owned and managed by their residents, they are
uniquely suited to offer alternatives to forcing seniors and individuals
with disabilities into institutions. Homeownership in a group setting of
people with similar needs and lifestyles gives those who may not be
capable of living on their own many viable opportunities for
independence and autonomy with mutual support. Co-ops can leverage the
community to offer a customized level of care that suits the needs of
their members. The residents decide what services are appropriate and
then provide them on a volunteer basis or pay for them together, often
getting services like personal aides and transportation at greatly
reduced rates. Those who would normally find themselves in group homes
or other institutional settings can achieve independence, along with a
sense of community and responsibility, in a cooperative.[^964]

Across the nation, the reconfigurations relative to accessible and
affordable housing initiatives that are under way at the state level, in
general, include two primary efforts: (1) developing more state and
local programs that help keep people who are disabled, frail, or
cognitively impaired at home; and (2) community-based residential
alternatives for people who are elderly and disabled who can no longer
manage at home but do not need the 24-hour subacute care/skilled nursing
environment provided in nursing homes. To make these institutional
alternatives available to people with low-incomes, states use a variety
of state and Medicaid-funded approaches to deliver home-based and
residential services.

#### Program Description

This section examines two approaches to affordable housing that offer
nontraditional choices to individuals with disabilities and the elderly
with limited income. Together We Can offers affordable cooperative
living with limited equity shares to keep prices well below market rate.
No Place Like Home Communities (NPLHC) offers homeownership and
subsidized rental options within a rehabilitated multifamily development
that also includes a range of supportive services.

### Together We Can---New York City

Together We Can is a project of the NCB Development Corporation (NCBDC).
Building on its successful history in cooperative housing finance, NCBDC
launched Together We Can in late 2003 as a three-year project to build
the capacity of community-based development organizations to engage in
cooperative development, increase the number of public and private
partners, and provide financing for the rehabilitation of rental
properties and the conversion of these properties to affordable
cooperative homeownership. Together We Can promotes cooperatives as an
effective means of preserving affordable housing and creating
homeownership opportunities for low-income families. Through this
initiative, housing units are preserved as affordable to serve as
vehicles for family stabilization and wealth creation for low-income
families and important anchors for neighborhood revitalization.[^965]^,^
[^966]^,^ [^967]

The Together We Can program promotes the use of the cooperative model as
an effective means of preserving affordable housing and creating
homeownership opportunities for very low-income families in New York
City. In 2004, NCBDC began working in New York City, where
public-private partnerships are already an effective tool for community
development. Over the course of this project, the goals will be to more
fully address the need for affordable housing in New York City by
creating at least 1,600 units of affordable cooperative homeownership;
to build the capacity of community-based development organizations to
develop affordable housing; and to demonstrate the effectiveness of the
cooperative model to enable low-income residents to become homeowners
and maximize partnering and leveraging opportunities to preserve
existing affordable housing. Together We Can will also increase personal
wealth by creating homeownership and equity-building opportunities for
low-income families.

Implementation of the program builds on existing partnerships with the
Department of Housing Preservation and Development (HPD) of the City of
New York, the Urban Homesteaders Assistance Board (UHAB),
community-based development organizations (CBOs), the local HUD office,
financial institutions, and private foundations. The Together We Can
initiative has the potential to provide permanent, affordable
homeownership for low-income families during the three years of the
program. In addition, by building the capacity of CBOs, it also has the
potential to build an infrastructure of capability and
expertise---creating a pipeline of affordable cooperative housing
development and multiplying the impact of this initiative.

### No Place Like Home Communities---Robbinsdale, Minnesota

NPLHC began in 1996 as a committee of families of people with
disabilities and special education and social services professionals
(organized by Intermediate School District 287) who were committed to
helping young adults with disabilities achieve as much independence as
possible. This group wanted to find a means of developing stable,
long-term supportive housing for adults with disabilities so they could
make full use of their abilities. The group evolved into an incorporated
nonprofit organization in 2001, with 501(c)(3) designation received in
2002. NPLHC was named by the adults with disabilities who were going to
live in the organization's pilot project---Adair Apartments.[^968]^,^
[^969]^,^ [^970]^,^ [^971]

NPLHC is best known for its work in the area of supportive, affordable
housing and homeownership. It is one of the first organizations in the
country to approach permanent, accessible, affordable, supportive
homeownership in a way that promotes economic independence and
self-direction among people with disabilities by helping them achieve
financial equity in their homes and emotional equity in their lives. In
2001, NPLHC acquired an apartment complex consisting of three buildings
with 11 units each in Robbinsdale, Minnesota. NPLHC developed a
financing model that dealt effectively with the limited public resources
available for supportive affordable housing. The NPLHC model is based on
the understanding that, while all of the residents with disabilities who
will live in NPLHC housing are low-income, some of their families have
adequate assets to buy an affordable unit with supportive services for
their family member with a disability, while others require public
subsidy even to rent a unit with services. NPLHC's pilot site---Adair
Apartments---contains 15 purchased condominium units and 15 rental units
subsidized through a variety of public funding sources. Through this
model, NPLHC developed 30 units of supportive housing for people with
disabilities, with public subsidies covering the cost of 15 units, thus
doubling the effectiveness of public funding for affordable housing.

In addition to affordable housing, NPLHC provides service coordination,
crisis management, conflict resolution, and activities to promote social
growth, self-advocacy, and independent living. These services, which are
offered through NPLHC's on-site Resource Center, ensure a critical
safety net for adults with disabilities who are striving to become
independent citizens. Participation in the Resource Center services and
activities is completely voluntary for residents. In this model, NPLHC
gives adults with disabilities the freedom to make their own decisions,
while offering crucial supports to sustain them on their path to
independence.

#### Core Program Elements

##### Funding and Expenditures

###### Together We Can

Together We Can works with foundations to fund and offer a loan fund for
predevelopment expenses; a credit enhancement fund to provide a partial
guarantee of the cooperative mortgages to attract investors and build
understanding of and confidence in cooperative loans; and a
capacity-building resource fund for CBOs.

###### No Place Like Home Communities

Asset-building activities currently sponsored by NPLHC include
accessible, affordable, supportive homeownership and conversion of
Section 8 renters to homeownership through innovative down payment and
closing cost programs. The development of a financial literacy and
first-time homebuyer education program known as "This Is Mine!" covers
basic banking, credit, budgeting, saving, loans, fraud, and consumer
rights, and helps to develop emotional equity through long-term
relationships with highly trained volunteer mentors. Programs help
individuals with disabilities, their families, and their employers
understand and use favorable tax provisions and savings programs through
Individual Development Accounts (IDAs) and 529 plans. Business planning,
including securing microenterprise loans for home-based businesses owned
and operated by individuals with disabilities, and solutions that more
responsibly serve individuals with disabilities who are the
beneficiaries of supplemental needs trusts.

##### Technical Assistance

###### Together We Can Program Financing and Technical Assistance Tools

Through the Together We Can initiative, NCBDC offers technical
assistance to experienced nonprofit developers who want to offer
affordable homeownership options. Together We Can works to increase
affordable homeownership by building developers' capacity to develop
affordable cooperatives.

#### Lessons Learned and Accomplishments

A 2004 study[^972] of LECs in the United States and Canada found that
LECs provide high-quality, safe, affordable housing for low-income
families; contribute to stable, economically and ethnically diverse
neighborhoods; can fulfill some economic and social needs more
successfully than rental housing, particularly for groups that have
special needs or where housing is especially expensive or distressed;
offer stable housing costs in hot real estate markets and resistance to
default in down markets, while requiring similar or lower subsidies than
comparable rental housing; and can be an attractive housing alternative
for a substantial portion of renters and some homeowners who spend more
than 50 percent of their income on housing.

##### NCBDC and the Together We Can Program: Impact and Experience

In its 20 years of operation, NCBDC and its affiliate, National
Cooperative Bank (NCB), have financed \$500 million supporting the
development of 30,000+ units of affordable cooperative and rental
housing. The Together We Can initiative started off strong. It obtained
\$15.7 million for renovations and expenses related to co-op conversion
for 425 units; it leveraged \$19.5 million in public funds and \$5
million more for 120 units; and it developed a new co-op training
curriculum in the fall of 2004. In October 2004, it hosted an Affordable
Cooperative Housing Roundtable with the Ford Foundation and Harvard
Joint Center for Housing Studies in New York City to increase the
visibility and understanding of co-ops in the affordable housing
community. Together We Can won the HUD technical assistance contract in
Metropolitan New York City and secured funding from Fannie Mae
Foundation, Surdna, Wells Fargo Foundation, MSN Fund/Cooperative
Development Foundation, and Bank of America Foundation.[^973]

##### No Place Like Home Communities: Impact and Experience

NPLHC is currently working with local community groups of adults with
disabilities, their parents, social workers, educators, and community
leaders to develop new projects in Washington, Ramsey, and suburban
Hennepin County that will serve a minimum of 120 individuals with
disabilities by the end of 2006. Ultimately, NPLHC hopes to serve as a
recognizable national model for homeownership and asset development for
people with disabilities.[^974]

In early 2004, NPLHC began working with NCBDC and its National
Disability Institute to strategize NPLHC's expansion across Minnesota
and the Upper Midwest. NCBDC is exploring partnering further with NPLHC
to develop more opportunities for accessible, affordable, supportive
homeownership in the Twin Cities area and the Upper Midwest. NCBDC
brings the creativity, financial expertise, mission orientation, and
willingness to explore nontraditional forms of financing that NPLHC
needs to develop a long-term version of its model for people with
disabilities. NPLHC has been acknowledged as one of the first
organizations in the country to approach permanent, accessible,
affordable, supportive housing in a way that promotes economic
independence and self-direction among people with disabilities by
helping them achieve financial equity in their lives. Its unique
financial model, utilizing both public and private resources, has
garnered national attention from disability advocates, policymakers, and
funding sources.

### Self-Directed Support Corporation---Baltimore, Maryland

#### Background

The conceptualization of Microboards came from David and Faye Wetherow
in the Canadian province of Manitoba in 1984. The Wetherows formed the
first Microboard around a young man leaving an institutional setting. A
Microboard, which does not have a specific legal meaning, is formed when
a small (micro) group of committed family and friends join together with
a person who lives with challenges to create a nonprofit society
(board). Together this small group of people addresses the person's
planning and support needs in an empowering and customized fashion. A
Microboard comes out of the person-centered planning philosophy and is
therefore created for the sole support of one individual.[^975]^,^
[^976]

At the time the Wetherows began developing the Microboard concept, there
were only three ways that the Canadian government would finance
community support services in Manitoba: (1) by licensing and funding a
limited number of residential or day program "spaces" under the auspices
of incorporated nonprofit societies or proprietary agencies; (2) by
paying board and care rates to the proprietors of commercial residential
facilities; and (3) by paying the equivalent of board and care rates to
foster families for children and adult home provider rates for adults.
In all three instances (except for foster care), the government was
funding an agency to operate a certain number of program spaces or
slots. This had several implications for the people served. If an
individual who needed supports did not happen to fit an open "slot," the
person would be forced to wait until an agency developed and the
government funded a new slot or a different kind of slot. Functionally,
this showed up in the form of waiting lists. If a person was being
served in an existing slot, and the type of service represented by that
slot did not fit that person's actual needs, there was very little
opportunity to change the service configuration, because alternative
slots were almost always full and had long waiting lists. Because there
were such powerful disincentives to make changes, people who were able
to make advances remained in mismatched service arrangements. The
express premise of many services---which was that they would be
"transitional" to other, less restrictive services---was inoperable
because actual movement was limited or entirely absent. On the other
hand, people who began experiencing increasing challenges or
difficulties were forced to remain in services that could no longer meet
their needs. Because of the congregate nature of most services, people
were extensively disconnected from relationships and opportunities in
the larger community. With rare exceptions, the places these individuals
lived, worked, and played, and the days of their lives, were entirely
defined by the agencies that supported them.

The intention of the Microboard was to bring the structures for
providing supports more in line with person-centered and family-centered
principles. The Microboard was designed to allow people to move (1) from
agency funding to funding individual support services; (2) from
agency-type governance structures to supports directly governed by the
individuals being supported and their friends and family members; (3)
from relatively inflexible service structures to supports that could
adapt rapidly to changes in a person's needs, interests, relationships,
and environments; and (4) from lives defined by services to lives
increasingly defined by companionship, connection, and contribution in
the broader community.

The structure of the first Microboards began with a simple question:
"What is the smallest unit of human organization that would be eligible
to receive agency-level funding?" The answer was a three-person
nonprofit corporation that could be organized to support as few as one
named individual; hence, the "Microboard." In 1989, the first
large-scale application of Microboards was developed by the Vela
Microboard Association in British Columbia, Canada, to develop the
concept into a critical service option for people with developmental
disabilities. Since its inception, Vela has helped set up over 170
Microboards in Canada.

Ensuring access to key health and support services was included as one
of the lessons learned from the community initiatives for adults with
disabilities that are described in the 2004 NCD report on livable
communities.[^977] One of the priority action steps listed in the area
of health care is

allowing money to follow the person to the most appropriate and
preferred care setting to create a more equitable balance between
institutional and community-based services, eliminate barriers to care,
and provide consumers with choice over the location and type of services
provided.

This is in concert with the Microboard concept.

#### Program Description

The Self-Directed Support Corporation (SDSC) model was established in
October 2001 by the Inclusion Research Institute (IRI) as a project of
national significance funded by the Administration on Developmental
Disabilities. The SDSC model was created to adapt the concept of the
Microboard to the legal, regulatory, and service delivery system for
people with developmental disabilities in the United States. The U.S.
adaptation was developed using existing service delivery components that
are widely accepted in the disability community. From a service
perspective, the SDSC model and similar small boards serve as
independent incorporated nonprofit entities, established to negotiate,
receive funds, organize, and manage supports around one person and/or
the person's family. In addition, the SDSC serves as a personal support
circle. The state funds the SDSC directly. The SDSC is the employer of
record and independently purchases the goods and services it needs, just
as the members of an ordinary household would purchase the goods and
services they need. The SDSC has complete freedom as to where and from
whom it purchases goods and services. For example, if the SDSC wants to
purchase payroll services rather than spending its time doing the
payroll, it can purchase that service from a bank, a commercial payroll
service, or a private bookkeeper, or it may join with other SDSCs to
form a cooperative payroll service. If the SDSC doesn't like the service
it is receiving, it can change the source at will, just as an ordinary
family may change lawyers or change banks.[^978]^,^ [^979]^,^ [^980]

The SDSC approach is another option that provides an opportunity for
public dollars to serve the person with a disability, while providing
accountability to the Federal Government and state governments. An SDSC
becomes the administrative body of the resources that the person with
the disability requires. It differs from traditional support services
because the board members (together, the provider) serve only one
person. Because support services are provided to only one person, states
may choose to be more flexible with regulations. However, an SDSC must
follow the accounting requirements of both the Federal Government and
the state government. It undergoes yearly audits to ensure
accountability to both of these entities. It is subject to the same
audits and reviews by state agencies as any other licensed service
provider. It also must follow labor laws and nursing
regulations.[^981]^,^ [^982]

The foundation of the SDSC model is six building blocks[^983] that
interlock to form a foundation on which people with disabilities and
their families can strive to build a life that offers real opportunities
for security, dignity, and contribution. These building blocks are
personal support; person-centered planning; responsive and flexible
individual assistance; individual funding; transition of existing
services; and community development. Supports are designed using the
principles and tools of self-determination to meet the individual's
unique support needs. The components of the SDSC model have been derived
from emerging best practices in self-determination described by Moseley
and Nerney,[^984]^,^ [^985] including the following:

-   ***Flexible Individual Budgeting***

The overall objective is to change state service delivery systems to
actively support, encourage, and enable people to directly control the
services they receive and the resources provided on their behalf.

-   ***Individually Created Budgets***

The person with a disability, with freely chosen family and friends,
should develop the budget for the supports he or she is to receive.

-   ***Open Budgeting Process***

The amount of the budget should be set through a process that involves
the individual in a discussion that identifies the person's needs, the
supports required to meet those needs, the presence of natural or
alternative means that can be used to meet needs, and the costs of the
support to be provided.

-   ***Authority Over Personnel***

The individual budget is designed to enable the person to supervise and
direct the staff who provide support. Even if the person receiving
services delegates responsibility to another organization (or
individual) to be the employer of record, the budget development and
implementation process recognizes the primary authority of the
individual over personnel.

-   ***Flexibility***

Within approved amounts, budgets are designed to support the reasonable
movement of dollars from line item to line item, as long as the
essential supports are maintained.

-   ***Administrative Structure***

The overall administrative and funding structure is designed to support
individual budgeting at two levels: (1) funding is allocated from the
state to the fiscal intermediary in a manner and form that enables the
organization to meet the financial and accounting demands that are
necessary to sustain a large number of individual budgets for people
receiving services; and (2) funding is allocated from the "provider" to
the individual through a mechanism that easily pays for the variety of
support alternatives that may be chosen.

-   ***Personally Directed and Controlled Planning Process***

The planning process must respect and reflect the central role of the
individual in the determination of its content and scope. Recognizing
that the authority for decision making rests with the consumer moves
person-centered planning to the next step by validating the authority of
the individual to choose the service provider, directly control how
resources allocated on his or her behalf will be spent, supervise the
staff who provide supports, and define how he or she will participate in
the overall service delivery system.

-   ***Independent Support Coordination***

The function of support coordination, or brokerage, is separate from
support provision. Ideally, support coordination is offered by an
independent organization or individual that is able to work solely on
behalf of the consumer without conflicting interests or
responsibilities. In this context, the support coordinator functions to
facilitate the transfer of power and control from the current system to
the individual.

-   ***Autonomous Fiscal Intermediary Services***

In many cases, the fiscal intermediary is the private nonprofit
organization established by and for the individual to hold the funds
that have been provided, including financial services to people for
functions typically performed by the business offices of agencies and
corporations. These activities may include, among other things, Medicaid
billing; check writing for all bills; administration of personnel
issues, such as employer of record services, tax withholding, worker's
compensation, and health insurance; and the management of other taxes
and benefits that might be appropriate, depending on the individual's
budget. The fiscal intermediary works for the individual and remains
accountable for ensuring compliance with all federal and state laws.

#### Core Program Elements

##### Staffing

The board of directors of an SDSC is responsible for identifying what is
important to the person receiving the supports. The board is not a paid
entity, which keeps it free of conflict of interest. As with any board,
it must keep records, manage the budget, and ensure that policies and
procedures are followed.

##### Funding and Expenditures

The costs of establishing an SDSC are in setting up the agency. These
vary from state to state, but the main cost is the incorporation
process. This is done through the state entity that oversees the
taxation and assessment process. Usually the cost is anywhere from \$40
to about \$150.

Usually funding for the supports that the person with the disability
requires is obtained through the state's Medicaid HCBS waiver. The HCBS
waiver dollars come from both state and federal Medicaid dollars. The
state is responsible for writing its own waivers and is responsible for
matching the federal dollars. Each state's match is different and,
because the state writes its own waivers, each state may have different
polices and regulations in place. However, the funding stream for the
SDSC is the same as for any other provider agency.

##### Technical Assistance

Some states have created Microboard associations to assist families and
other entities that wish to establish an SDSC or a small board. These
associations provide development, support, and training. The Inclusion
Research Institute (IRI) provides guidance, resources, and tools for
creating an SDSC on its Web site.[^986]

#### Lessons Learned and Accomplishments

The IRI has been tracking the establishment of SDSCs and the Microboard
approach. Currently, there are approximately 100 SDSCs (or some form of
this model) across the United States. The numbers are growing rapidly,
with about 75 more SDSCs in some phase of exploration or start-up.
States that already have these small boards include Maryland, Colorado,
Oregon, Missouri, Utah, Oklahoma, Virginia, Pennsylvania, Arizona,
Minnesota, California, and Tennessee. States that are in the process of
developing them include Nevada and New York.

##### SDSC Spotlight: Joshua's House Incorporated

Jackie Golden, executive director of IRI, shared the story of her son,
Joshua, and how the SDSC model made a difference in his life as well as
his family's life. Joshua's House Incorporated (JHI) is the SDSC that
was designed to deliver the supports Joshua needs to live successfully
and be fully included in his community. JHI is a provider agency that
provides custom-designed supports for Joshua. For Joshua and his family,
JHI delivers his supports using the principles and tools of
self-determination.[^987]^,^ [^988]

Joshua Golden is a survivor of traditional support networks. Since
Joshua was eight years old, he has been receiving some type of public
supports. The supports never fully matched Joshua's needs and often hurt
him both physically and mentally. The Goldens explored the SDSC model
and wondered why they could not become the provider of Joshua's
supports. The Goldens understood the need for accountability regarding
public funds, but they also knew that Joshua needed control over his
supports, and they felt that the system was taking too long to catch up
with his needs. Therefore, they believed that the SDSC model was the
answer. Joshua has significant cognitive disabilities and requires
full-time care. JHI incorporated and then applied for and became a
licensed provider of supports for Joshua. JHI is the employer of record.

The Goldens formed a nonprofit, JHI, around Joshua and became the legal
entity to receive Joshua's allotted Medicaid dollars. Only individuals
who care and share a vision for Joshua serve on the board of directors
for JHI on a volunteer basis. The board, committed to Joshua, ensures
that Joshua receives services that match his needs, desires, and
lifestyle. He is in control, with the assistance of people who want him
to be successful.

***What does this mean for Joshua?*** It means that Joshua no longer has
to deal with a system that does not value him as a person. He can select
who comes into his life, as he is the director and decision maker of his
support team, balanced with others who care about him.

***What does this mean for Joshua's family?*** Joshua's sister and his
parents serve on his board, along with Joshua. The board also has five
other members. The key for the Goldens was to include people with a
vision and commitment who are willing to spend time with Joshua. It also
means a support network for Joshua's family. No longer is it only his
parents looking to secure Joshua's future. Now his legal board of
directors is working for him. For Joshua's sister, she knows that she
will have people to help her with Joshua when his parents are no longer
around; it is a support team for her as well. While the SDSC has been a
lot of work, it is also the most wonderful thing that has happened to
the Golden family. Joshua truly can have a life that is his own, and his
family can finally sleep at night, knowing that people who care about
him are involved in his life.

### Pooled Trust---Bedford, New Hampshire

#### Background

Making financial arrangements for an individual with disabilities is an
important part of planning for future needs. These arrangements help
ensure that there will be some financial security when a parent or
guardian can no longer provide help. Because of the various factors that
need to be considered, making these arrangements can be quite complex.
Arrangements include a family's finances, the family member's needs, and
government benefits or other assets of the family member with a
disability. Many individuals with disabilities receive means-tested
benefits, such as Supplemental Security Income (SSI) and Medicaid.
Means-tested benefits are benefits available to people with minimal
income and minimal assets or resources. If a person's income or
assets/resources exceed the specified limit, he or she will not be
eligible for the benefit. Often, for example, parents or others plan for
the future financial security for their child with a disability by
leaving the child an inheritance. If an individual receives SSI and/or
Medicaid and has access to more than \$2,000 in assets, he or she would
lose eligibility for SSI and Medicaid.

One way to provide for the financial security of someone with a
disability without jeopardizing government benefits is by using a trust.
Trusts hold money or property that the grantor (the person who sets up
the trust) leaves for the benefit of another person (the beneficiary).
Unlike a gift or inheritance through a will, a trust usually contains
carefully written instructions on when and how to use the trust's
assets. Trusts may be designed to distribute assets to one or more
beneficiaries at certain times or under certain conditions. Some trusts
make distributions to the beneficiary (or beneficiaries) over time.
Others instruct the trustee to distribute only the trust's earnings
(from interest or investments) or the amount the trustee thinks the
beneficiary needs. Some trusts may require the accumulation of all
income for distribution at a future time.[^989]^,^ [^990] Supplementary
discretionary trusts are designed so that the principal (the amount put
in the trust account) and its earnings (from interest or investments)
supplement the beneficiary's basic care and do not replace the public
funds required to pay for this care. This kind of trust is good for the
SSI and Medicaid recipient whose assets may not exceed a specific level.
The trust grantor can carefully direct that the trust not pay for
services covered by Medicaid or other benefits received as a result of
the child's disability. Instead, the trust would require the trustee to
provide funds for certain items, services, or other expenses not covered
by SSI and Medicaid. These types of trusts may also be set up for
someone who is not on SSI and Medicaid.

Two federal laws support trusts for individuals with disabilities who
receive Medicaid and SSI. The Omnibus Budget Reconciliation Act of 1993
(OBRA 93) is a federal law that affects how people with disabilities can
have a trust and still qualify for Medicaid. The Foster Care
Independence Act of 1999 is a federal law that affects how people with
disabilities can have a trust and still qualify for SSI. Both laws allow
many people with disabilities to place their own money into a trust and
become (or remain) eligible for Medicaid and SSI.

#### Program Description

Pooled trust programs enable families or other caregivers, and in some
cases individuals with disabilities, to establish relatively inexpensive
and effective trust accounts that provide supplemental funds for the
person with a disability while protecting him or her from losing
important government benefits. In lieu of establishing an individual
trust account, families set up a subaccount with a trust program.[^991]
Pooled trust programs provide a convenient and economical way to have
trust funds administered for people with disabilities that will
supplement the benefits offered by entitlement programs. These programs
normally use a discretionary irrevocable trust for supplemental needs.
The assets placed in the trust by parents or others are allocated to a
separate subaccount. The assets from all subaccounts are pooled to be
invested and managed as one larger amount. Records are maintained of the
amount of each person's trust and the amount spent for that individual.
The program divides the trust earnings among the individual subaccounts
in shares equal to the amount that each subaccount has in the pooled
amount.

Using a pooled trust program offers many advantages. Parents may not
have or know someone who is willing to be a trustee. Trust programs
usually have knowledgeable staff and volunteers who will serve as the
trustee or manager of the trust. An individual trustee could die, move
away or not fulfill the trustee role for some other reason. Trust
programs offer continuity, as the program does not depend on just one
individual. The trust document used by programs usually has been
developed and reviewed by attorneys with expertise in this area of law.
There is also the likelihood that publicly funded agencies have reviewed
the trust document for compliance with their agency regulations. Banks
and trust companies will not accept or manage a trust that is not funded
at a threshold amount. Depending on the bank, the trust account may have
to be several hundred thousand dollars or more. Parents who cannot
afford to fund a large trust are often able to fund an adequate account
in a pooled trust program. Pooled trust program staff or volunteers
often have expertise and experience with people who have disabilities.
The volunteer board of the program may also include legal and financial
experts, family members of people with disabilities, and advocates.
Trust programs usually work closely with banks and trust companies to
maintain trust accounts and can tap the expertise of financial
institutions. This relationship can help maintain good financial
accountability without incurring high fees for the beneficiaries. One of
the most significant advantages of using a pooled trust program is the
expertise brought to managing the trust and making the required reports
after it begins to make disbursements.

#### Core Program Elements

##### Staffing

A pooled trust program usually undertakes the daily management of the
trust subaccounts. This includes handling requests for and expediting
disbursements, maintaining each subaccount's records, reporting to
various agencies that might be affected by disbursements, preparing
necessary reports (e.g., tax-related reports), and generally managing
the program. Many trust program representatives also spend considerable
time meeting with families about the program and assisting families and
others with future planning. Pooled trust programs are set up as or
administered by a nonprofit organization. They may be under the auspices
of or closely connected to one or more disability-related organizations.
Groups like state and local chapters of The Arc, Goodwill, the National
Alliance for the Mentally Ill (NAMI), and others have been active in
establishing pooled trust programs.

Some pooled trust programs include direct care coordination services for
their beneficiaries or contract with care coordinators to provide
services. Services vary depending on the agency and the services
provided, but the care coordinator may visit the beneficiary, be present
at meetings about the individual, advocate on the individual's behalf,
and provide related services as needed. Usually the costs of these
services are covered by the individual's trust funds and are charged
hourly.

##### Funding and Expenditures

Pooled trust programs typically work closely with a bank, trust company,
or other financial institution. Some pooled trust programs have banks
serve as the trustee for the program's funds, while other pooled trust
programs are their own trustees and may use the bank as an investment
manager or a co-trustee.

Pooled trust programs usually must charge fees for their services.
However, compared with managing an individual trust, by pooling
resources for investment and management, pooled trust programs can
minimize costs, so that fees are usually reduced considerably.

#### Lessons Learned and Accomplishments

As one of its projects, the Rehabilitation Research and Training Center
on Aging with Developmental Disabilities, in conjunction with The Arc,
conducted a study to identify, develop, and evaluate techniques that
assist individuals with developmental disabilities and their families to
plan for future needs, including future financial needs. This included
research to determine the best practices in pooled trust
programs.[^992]^,^ [^993]^,^ [^994] The project used a community-based
model of aging-in-place for families of people with intellectual and
developmental disabilities. The aims of the project were to increase
understanding of quality practices in pooled trust programs; to aid
families in using trust programs or alternatives; and to increase the
family's ability to develop effective future plans that address
financial, legal, and service/support areas. The study had three
research questions: What information do families and individuals need to
make an informed choice about using pooled trust programs? How are
pooled trust programs organized and what services do they offer? What
are the experiences and levels of satisfaction of families who have used
pooled trust programs? Three studies were conducted to answer the
research questions.

The research conducted on best practices in pooled trust programs
identified the following key findings and potential implications.
Families' needs for information on guardianship and alternatives,
trusts, and planning for supports and services are well documented.
However, early studies indicate that few families conduct financial
planning for a family member with a disability. Heller and
Factor[^995]^,^ [^996] found that only 31 percent of families in their
study contacted an attorney to initiate planning. The survey (study 3)
conducted by this project heard primarily from families that were
engaged in future planning. Seventy-four percent of the 223 respondents
had a financial plan in place for their family member with a disability.
Only 5 percent of these respondents used a pooled trust. Many of the 26
percent who had not developed a financial plan assumed that such
planning for the relative with a disability was just for people who are
wealthy. This supports the importance of educating families about
options other than a trust established with a financial institution. The
use of a pooled trust is one option; however, it is not universally
available, as only 22 states are known to have pooled trusts operating,
and not all of these are available to families statewide.

##### Pooled Trust Program Spotlight: Enhanced Life Options, Bedford, New Hampshire[^997]^,^ [^998]

The Enhanced Life Options Group, established in 1993, is a nonprofit
organization that develops and carries out enhanced life option plans
for people with disabilities. It provides information, consulting,
advocacy, mentoring, and trust-related services for the disabilities
community, including special needs trusts, supplemental needs trusts,
pooled trusts, and trusts for independent living. There are nine
directors, most of whom have a person with disabilities in their family.
Board members also have professional skills, including law enforcement
and banking. Board members have been active professionally in New
Hampshire's disability community for many years, working for nonprofit
organizations such as NAMI New Hampshire and the Parent Training and
Information Center. The Enhanced Life Options Group is a member of the
New Hampshire Brain Injury Association, NAMI New Hampshire, The Arc
national organization, Planned Lifetime Assistance Network (PLAN), and
the National Guardianship Association.

The Enhanced Life Options Group offers two different types of pooling
arrangements: (1) individually tailored trusts with pooling provisions;
and (2) a master trust arrangement in which the family does not create
the trust but joins a trust already created. In addition to providing
trust services, the group participates with the New Hampshire Community
Loan Fund in MoneyWorks in a program that makes Individual Development
Accounts (IDAs) available. MoneyWorks IDAs are matched savings accounts
designed to help eligible low-income people with disabilities accumulate
resources for education, homeownership, and small business development
in the Manchester and Portsmouth, New Hampshire, areas. The Enhanced
Life Options Group has also participated with Project Dollars and Sense
in a study of work incentives in the disabilities community, which was
funded in part by the U.S. Social Security Administration, to provide
Individual Career Account (ICA) demonstration projects in the Manchester
and Keene, New Hampshire, areas. Project Dollars and Sense ICAs are
microgrants designed to help remove work-related financial barriers for
people with disabilities.

### Child Trust Fund---United Kingdom

#### Background

The British government believes that saving and asset ownership are an
important complement to the three main pillars of its welfare strategy:
work and skills, income, and public services. Regular savings provide
individuals with a pool of financial assets for times of adversity, for
planning for retirement, or to enhance long-term independence and
opportunity. The government has implemented several programs to extend
the benefits of saving and asset ownership through Individual Savings
Accounts, Stakeholder Pensions, and the Pension Credit. But there is
strong evidence to suggest that lower-income households are not saving
enough for themselves, or their children, to enjoy the benefits and
opportunities of asset ownership.[^999]^,^ [^1000]

The British government looked at a number of ideas to ensure that the
benefits of saving are more widely available. One possible vehicle that
was explored for delivering the government's objectives was the Child
Trust Fund (CTF). A CTF would be a universal account, opened for all
children at birth, with an endowment paid in by the government, based on
the principle of progressive universalism---every baby would receive an
endowment, but those in families on lower incomes would receive a larger
lump sum. A CTF would meet the government's objectives for saving and
widening opportunity by ensuring that all young adults, regardless of
their families' circumstances, begin their adult lives with some level
of assets. This would provide all children with the benefits of having
savings (i.e., security, opportunity, long-term independence), with
those children most in need receiving the most help from the
government.[^1001]

#### Program Description

In April 2003, Gordon Brown, MP, chancellor of the Exchequer, announced
the CTF for all children born on and since September 1, 2002. The CTF,
which became operational in April 2005, represents a long-term savings
and investment account opened for each child, into which the government
will make an initial payment of either £250 or £500 (approximately \$465
or \$930, respectively), depending on the family's gross income.
Children from lower-income families---those below the Child Tax Credit
(CTC) limit---will receive an additional £250, because the government
believes that children from higher-income families are more likely to
have their funds supplemented by parents and grandparents. This
additional amount will be added to the account once the CTF award for
that year is confirmed. About a third of the children will be eligible
to receive the additional contribution. This ensures that the CTF is
both a universal and progressive policy---helping to extend opportunity
to all while targeting support at those most in need.[^1002]^,^
[^1003]^,^ [^1004]^,^ [^1005]^,^ [^1006]

The saving ethic across the United Kingdom as a whole is low, and it is
hoped that the launch of the CTF will reverse this trend. The goal is to
ensure that every child, no matter what family circumstances it is born
into, will have a nest egg for the future, which each child will be
encouraged to take an active interest in. The main aim for the CTF is to
educate parents and children about the importance of saving from an
early age, to provide for the future, to establish a saving habit, and
to aid in the financial education of young people. To date, nowhere else
in the world has a government committed its resources to such a program.
It represents a public-private partnership in that it relies on private
sector financial institutions as the vehicle to achieve universal
asset-building goals.

Entitlement to a CTF account will automatically be linked with
entitlement to child benefit, which reaches virtually all children
living in the United Kingdom. The notice of the child benefit award will
automatically trigger issuance of the CTF voucher. In addition, the
government is putting in place special arrangements to ensure that CTF
accounts will be opened for children looked after by local authorities
or under equivalent arrangements in Scotland, who do not qualify for
child benefits. From early 2005, the government will begin to send out
the vouchers to the parent/guardian to open a CTF plan from an approved
provider. Before the dissemination of the vouchers, the government will
be contacting parents and guardians to confirm their child's
eligibility.

CTF accounts are owned by the child and in the child's name. Annual
statements will be sent to the child throughout the 18 years the CTF
account is open. The CTF account will not affect any CTC benefits the
family receives, and neither the parent/guardian nor the child will pay
tax on income and gains in the account. However, there may be fees
associated with the provider's administration charges. Private
contributions may be made to the account up to £1,200 (approximately
\$2,200) per year after taxes, and account holders may transfer their
accounts among providers at any time and as many times as desired at no
charge. The plan will mature on the child's 18th birthday, at which time
the child will receive the assets; there will be no restrictions on what
the money can be spent on. The funds are not accessible until age 18.
Financial institutions are not required by law to offer CTF accounts.
However, those that wish to---including banks, brokers, investment
managers, and life insurers---must be approved as accepted providers by
the Financial Services Authority (FSA, the independent industry
regulator). The government wants to ensure the development of a
competitive CTF market that provides simple, good value, and accessible
CTF accounts with adequate incentives to save.

While children are eligible who were born beginning September 1, 2002,
the CTF did not become operational until April 2005. Therefore, if a
child was born between September 1, 2002, and April 4, 2005, he or she
will receive slightly more, because the child was eligible prior to the
issuance of the voucher. The CTF vouchers issued to children before the
operational date in 2005 will have a higher value than the standard
voucher to recognize this fact. Each child will receive a second, as yet
undetermined, payment on his or her seventh birthday. As well as helping
the accounts to grow, these age-related payments will be a useful
reminder of the CTF account. As with the additional contribution, a flat
rate payment will be distributed to all children, and an additional
payment will be made to children in lower-income families. In the
exceptional cases in which a parent or guardian chooses not to claim the
child benefit, the child will not be eligible for a CTF account.

#### Core Program Elements

##### Technical Assistance

The design of the CTF---including an additional government contribution
to the account at the age of seven, annual statements issued by
providers to all children, teaching and learning resources for use in
the classroom, and a dedicated Web site---will help children engage with
their accounts and make the best use of the assets at account maturity.
The government also wants parents to actively engage with the CTF and
will provide resources to ensure that parents are helped to make choices
about their child's CTF, including an information pack to be issued
alongside the CTF voucher, and will work with the FSA to ensure that
consumer information activity includes the CTF.[^1007] The detailed
information packet for parents will include such information as a full
explanation of the CTF rules; details of all CTF providers; an
explanation of the different types of accounts available; a step-by-step
guide to opening an account; and sources for further information and
guidance. In addition, the packet will include illustrations showing the
impact of a range of investment choices and contribution levels on
account growth and the risks associated with these choices.

The CTF, by linking with the school curriculum, will build on financial
education by ensuring that every young person has access to a financial
asset, increasing the relevance of financial education for all and
helping young people understand the advantages of saving. To support
learning through the CTF and related topics in the classroom, the
government will commission the development of a range of CTF teaching
and learning resources. The resources will help children improve their
financial capability and will be clearly linked in different parts of
the curriculum. These resources will be designed to meet the child's
needs at different ages, beginning with an introduction to the basic
concepts of saving and moving toward guidance on possible uses of
financial assets, including continuing to save, as the young person's
CTF nears maturity. The government will promote and make available these
resources to all schools.[^1008]

#### Lessons Learned and Accomplishments

It is too early to highlight any lessons learned and accomplishments;
however, enhanced functional literacy is being documented as a byproduct
for both children and families as a result of implementation of the CTF.
As a universal benefit, the CTF provides opportunities to devise new
teaching and learning materials, using the fund as a tangible example of
a savings/investment product.[^1009]^,^ [^1010] The CTF provides an
opportunity to promote financial awareness among children and young
adults and to give them a real-life savings vehicle that can be
associated with financial education. Schools will be able to use the CTF
as an example in their financial education work, and this in turn could
encourage children's and young people's interest in their accounts.
According to the FSA, there are various ways in which children and their
families could be encouraged to be involved with their CTFs. Saving
could be encouraged at school. Many schools operate school banks (in
some cases this is a credit union). Teenagers ages 15--17 who have a
maturing CTF could be encouraged to make decisions about its use and be
given the necessary understanding to make informed decisions. This could
happen as part of existing work done in schools and colleges; for
example, as part of work-related learning, as part of career education,
when considering options for higher education (and how that might be
funded), or when considering training or self-employment options.
Various government initiatives dealing with young people can incorporate
the CTF concept into their programs.

While there are no known outcomes, it is a good practice, and the U.S.
government could benefit from the approach the British government is
taking through this public-private partnership of universal asset
building. In the United States, a similar strategy with restricted use
of funds for children determined to have a certain level of need for
future LTSS might be evaluated as an alternative (supplemental or
complementary) financing strategy to current college 529 plans or
individual retirement accounts. A 2004 Aspen Institute Brief[^1011]
evaluates the approach the British government has taken and discusses
some issues and implications for a similar child account policy for the
United States. According to the brief, while the CTF represents a
significant advance in savings structures, government-provided matching
funds through direct payment or refundable tax credits would be an even
more effective incentive to encourage families in lower-income brackets
to save. A drawback to the CTF is that its incentives to save do not
expand on existing tax-based incentives to the full extent possible. A
policy created in the United States could be designed specifically to
stimulate asset acquisition, limiting the use of funds to investment in
higher education or a small business, a down payment on a house, or a
retirement account. In addition to stimulating asset acquisition, such
restrictions would also be consistent with existing U.S. asset-building
and long-term saving policies. Further, according to the brief, a hybrid
system in which accounts are offered by a government-sponsored entity
and by private financial institutions would maximize consumer protection
and the quality of product offerings. Access to a government-sponsored
account would give families the choice of a basic account with low costs
and good service. The private sector financial institutions' product
design expertise and marketing creativity would raise the accounts'
visibility, thereby stimulating greater participation and higher account
balances. An additional benefit of the hybrid system is that the
existence of quality low-cost government accounts would stimulate
competition among private sector providers.

## Part II Conclusion

LTSS reform requires leadership, creativity, capital, and risk-taking.
The waters of reform are rough and costly. It is clear that states
cannot take on the burden of reform without substantial federal
involvement. There is, however, a growing recognition that a fundamental
shift in values is occurring as states move services and supports to the
community and home and out of the institutions. Individuals with
disabilities are being provided with more choices to live independently.
The shift to a system that is not anchored by a medical model and an
institutional bias requires fresh, creative thinking that reanalyzes the
use of public and private resources.

The examples provided of realignment of service and financial
relationships at an individual and community level recognize the
importance of consumer choice and direction. The two examples of
cooperative organizational structures that provide places to live that
are affordable and that improve support workers' level of compensation
and job satisfaction offer viable options to respond to the current and
growing imbalance of demand versus system capacity to respond to need.
The three examples related to management of assets---pooled trusts,
support corporations, and CTFs---raise important questions about public
versus private responsibility to create and manage a social safety net
for individuals deemed in greatest need of long-term support.

These experiments in progress challenge society and policymakers to
offer a new role as resource managers to individuals and families who
traditionally have been the consumers of social services. The CTF offers
the boldest experiment in redefining public responsibility to all
children and families regardless of where they live, their economic
status, and immediate needs. It also raises new questions about
traditional policymaking that has defined and calculated need based on
economic status. Access to supports and services as an entitlement has
historically been means tested for individuals under the age of 65. The
CTF offers a new approach to the social contract between a nation and
its citizens that places enhanced value on asset development as a
foundation for future public policy development.

The Time Bank exchange of value offers further opportunities to rethink
the value and purpose of a community to support all its members with an
exchange of resources to respond to defined needs. Proponents of the
Time Bank exchange are quick to point out that it cannot replace
government intervention. However, it can be a cost-effective approach to
augment and complement a social safety net that responds to needs in a
way that recognizes disability as part of the human experience to be
embraced by community inclusion.

What is most refreshing about all the identified examples of local and
individual strategies is that they do not begin with the assumption that
the existing framework of government resources is the essential building
block for the delivery of LTSS. These strategies do not start with
Medicaid or Social Security to build and design a community-based
system. However, each example of community and family development
strategies embraces three fundamental principles to help design the ship
that may offer safe passage in the future:

1\. Consumer choice and direction is an essential design principle that
must rebalance risk and responsibilities between government and the
target audience.

2\. Communities should be supported by government through tax and social
policy to support formal and informal caregiving, recognizing the value
of cooperative principles of ownership to improve affordability and
worker and consumer satisfaction.

3\. Asset development is a lifespan challenge that should be a
fundamental principle of all future policymaking, which should reward
all children and families for saving for the future to respond to
planned and unexpected needs as a result of disability as a natural part
of the human experience.

Although each of these selected individual and local strategies has
promising early evidence of success, as a group they represent works in
progress that deserve the increased attention of policymakers to expand
replication options and continue the collection of data to further test
results over a longer period of time. The challenge for future
policymakers is to identify ways to embrace these concepts and
nontraditional system approaches in the design of the future system.

#   {#section-40 .unnumbered}

# 

# Chapter 6

# Recommendations for Incremental and Clean Slate Reform 

##   {#section-42 .unnumbered}

## Table of Contents: Chapter 6 

**Page**

**Part I**

**Introduction to Incremental Reform** 493

**Part II**

**Moving Forward---Improving the Current LTSS Ship** 494

**Part III**

**The New Millennium LTSS Model** 508

**Part IV**

**Ameriwell---The New Millennium LTSS Model** 511

##   {#section-43 .unnumbered}

## Part I Introduction to Incremental Reform

The recommendations offered are anchored by the original set of
assumptions that emphasizes the value of consumer choice and direction,
the importance of access and sustainability both programmatically and
financially, the preference for home- and community-based long-term
services and supports (LTSS), and the necessity of federal leadership,
financial investment, and oversight. The original assumptions have been
sustained and correlated by the research and supported by experts across
the diverse spectrum of stakeholders: government, policy analysts,
service providers, people with disabilities, and families.

The recommendations have been divided into two parts. The first set of
recommendations represents a comprehensive set of strategies that would
move the ship of LTSS forward at a slower pace.

The second set of recommendations would establish a new millennium
policy with multiple financing streams to sustain LTSS for Americans
with disabilities across the age span, regardless of geography, level of
personal resources, and family support. The second set of
recommendations represents the construction of a new ship to navigate
the rough waters expected.

Both sets of recommendations recognize that there is no single or simple
policy solution to the challenges documented in this report. Both sets
of recommendations identify specific agencies and committees within the
executive and legislative branches of the Federal Government that would
have the lead role to move forward with implementation and, where
appropriate, additional research. Although there may be disagreements
about which path will increase the probability of the LTSS ship's safe
passage through troubled waters, there is strong, overwhelming support
for focusing on these issues now rather than later. With the perfect
storm ahead, Congress and the executive branch cannot afford to keep
missing the boat. LTSS comprehensive policy development will define us
as a nation. It is imperative that the United States retool its
programmatic and financial infrastructure to protect and promote
individual dignity and independence within the context of supportive
families and communities to meet its growing economic and demographic
challenges.

## Part II Moving Forward---Improving the Current LTSS Ship

1\. Increase policymaker knowledge and understanding of public and
private costs and benefits of LTSS for people with disabilities under
age 65 and their families.

Implementation Lead:

-   **Office of Assistant Secretary for Planning and Evaluation,
    Department of Health and Human Services (HHS)**

-   **Congressional Budget Office (CBO)**

-   **General Accountability Office (GAO)**

The lack of data presenting a complete and accurate picture of the costs
for LTSS for families with children with disabilities and adults with
disabilities was a key finding by NCD researchers. Despite multiple
studies by CBO and other federally sponsored research centers on the
costs of long-term care (LTC) for seniors, the younger population with
disabilities under age 65 has not been a priority. The traditional
definition of LTC identified acute care needs as well as nonmedical
services and supports for seniors. Today's definition of LTC has changed
to reflect the ongoing growth and integration of disability into
mainstream culture. LTSS for people 65 years and younger is about many
nonmedical services and supports, such as personal assistance, assistive
technology, financial management, housing, transportation, and
nutrition. How a person is assisted in compensating for loss of
activities of daily living (ADLs) will define their future earnings
potential and economic independence.

Cost studies are needed that evaluate, in a systematic and comprehensive
manner, the extra costs of raising a child with a disability and
continued support of the person as an adult. Such studies should examine
differences of support needs reflected by cost for individuals with a
range of functional limitations in family settings and other home,
community-based, and more restrictive skilled nursing environments.
Other differences to be analyzed should relate to diversity of race,
ethnic background, gender, disability, and geography. Protocols should
examine the costs to consumers and families as well as the costs to
government (with specific government funders identified and quantified)
and other institutional payers as part of the evaluation of different
program models. Administrative versus direct service costs should be
scrutinized. As recommended by the NCD report "Consumer-Directed Health
Care: How Well Does It Work?" (October 2004), well-defined guidelines
are needed to accurately capture the role of families and individuals in
paying for LTSS to avoid the risk of cost-shifting to families as
supports and services move from institutional to community-based
settings.

More needs to be learned about the cost benefits of consumer-directed
services and support plans and improved coordination and collaboration
in the delivery of services through Aging and Disability Resource
Centers (ADRCs).

An additional area of focus is to increase understanding of the cost
benefits of LTSS insurance products as they are brought to market and
customized to respond to the needs of individuals with disabilities
under age 65. Finally, the CBO should be tasked with projecting the
costs of LTSS for individuals with disabilities under age 65 over the
next 30 years based on a consumer-directed service delivery model and
alternative options for public and shared private responsibility for
costs without current impoverishment rules. CBO should also investigate
the impact on public costs of making available comprehensive
community-based LTSS, with particular attention to possible reduced
demand and costs for nursing home placements.

All three agencies should be charged with preliminary reports ready for
the next term of Congress in January 2006 and complete reports by the
end of the year.

2\. Design and implement a multifaceted action plan of monitoring and
oversight of state activities to meet their Americans with Disabilities
Act (ADA) obligations as a result of the *Olmstead* Supreme Court
decision.

Implementation Lead:

-   **Office for Civil Rights, Department of Health and Human Services**

-   **Civil Rights Division, Department of Justice**

The *Olmstead* Supreme Court decision in 1999 provides important legal
support for states' current efforts to rebalance their LTSS systems
toward home- and community-based settings. The Administration, through
an Executive Order and grant activities, has taken seriously the Court's
decision and mandated a state planning process to improve and expand
community-based choices for people with disabilities. Over \$200 million
has been awarded by the Centers for Medicare and Medicaid Services (CMS)
to states on a competitive basis to promote system changes. Despite
these efforts, litigation continues to expand in class action suits. In
more than 25 states, individuals with disabilities have been frustrated
with the pace of change and the slow movement of funding away from
nursing homes and institutional settings to communities.

The Office for Civil Rights at HHS and the Justice Department have the
responsibility to monitor and oversee *Olmstead* state plan
implementation. As both agencies have done on numerous occasions in the
past related to ADA, there is an opportunity to be proactive and design
and implement an action plan that evaluates individual state efforts to
meet the *Olmstead* community imperative mandate. Each state should be
rebalancing its financing, reducing the number of individuals with
disabilities residing in nursing homes, diverting people from entering
nursing homes, and putting in place the infrastructure for expanded
home- and community-based supports for individuals with disabilities.
The action plan should require site visits in all states within the next
24 months; consumers and other interested stakeholders should be
provided with notice of the state visit and offered an opportunity to
meet with federal officials. State status reports on current efforts
should be made public and available for comment. Federal monitoring
reports would also be made public. Annually, both agencies would submit
to Congress a report on their monitoring and oversight activities. Both
the House and Senate Judiciary Committees should hold annual oversight
hearings to monitor federal and state activities and hear from people
with disabilities and their families.

3\. Decouple eligibility for home- and community-based services (HCBS)
under an HCBS waiver from a determination of nursing home eligibility.

Implementation Lead:

-   **Senate Finance Committee**

-   **House Energy and Commerce Committee**

-   **Centers for Medicare and Medicaid Services**

There are multiple suggestions from the Expert Panel and other key
stakeholders as to how to amend current public policy to remove the
institutional bias in the Medicaid program. All amendments would give
Medicaid beneficiaries greater choice in how financial assistance is
provided to cover a range of LTSS. The clear majority of stakeholders
recognize the overwhelming consumer preference for HCBS. Two
complementary options deserve immediate attention from Congress and
bipartisan support. The first option is to shift the HCBS program from
its current waiver status to a state plan requirement. Eligibility would
be delinked from nursing home eligibility, and states would receive an
increased federal match under their state cost-sharing agreements for
services provided in this category as part of their Medicaid
reimbursement for authorized expenditures. CMS would set guidelines for
a functional assessment process and the minimum threshold of services to
be covered, including personal assistance services.

The second, complementary, option would be that federal funding follows
the person from a nursing home to a community setting as part of a
person-centered plan and self-directed budget. The Money Follows the
Person (MFP) option would continue for a three-year period to help
support successful community transition. Both options are currently part
of legislative proposals before Congress. MFP and the Medicaid Community
Attendant Services and Supports Act (MiCASSA) deserve to be the focus of
hearings before the end of the year.

4\. Increase support for families and significant others in their role
as informal and unpaid caregivers for individuals with disabilities over
and under the age of 65.

Implementation Lead:

-   **Office on Disability, Department of Health and Human Services**

-   **Administration on Aging, Department of Health and Human Services**

-   **House Ways and Means Committee**

-   **Senate Finance Committee**

Eligibility for LTSS, and the scope and intensity of covered services,
varies significantly from state to state. States have considerable
discretion in determining whom their Medicaid programs will cover.
Despite state variability in criteria for Medicaid eligibility and scope
of benefits, in all states, individuals with disabilities are dependent
on informal caregivers, including parents, family members, and
significant others. The estimated benefit of informal caregiving exceeds
\$200 billion annually. Services should be designed to support, not
supplant, the role of the family and actions of informal caregivers.
Increased support for informal caregiving could be achieved through
implementation of a complementary set of recommendations. Address the
lack of portability from state to state for Medicaid LTSS.

-   Enact the Lifespan Respite Care Act to award grants or cooperative
    agreements to develop statewide lifespan respite care programs.
    Lifespan respite care is a coordinated system of accessible
    community-based respite care services for family caregivers,
    regardless of the individual's age, race, ethnicity, or special
    need.

-   Establish a National Resource Center on Lifespan Respite Care to
    maintain a national database and provide training, technical
    assistance, and information.

-   Amend the tax code to allow an additional standard deduction for any
    family who spends in excess of \$2,000 for the care of a family
    member with a disability. The deduction would be allowed for costs
    related to personal assistance services, technology-related
    assistance, transportation, respite care, medication, and adult day
    programs or workplace supports. Expenses would be disqualified if
    they are reimbursed by insurance or a public resource.

-   Authorize a study, coordinated by the Departments of Labor and HHS,
    to determine the costs to the economy---in terms of education,
    employment, income forgone, and transfer payments---as a result of
    the demands of family caregiving for parents, family members, and
    significant others.

-   Pilot test and evaluate the use of Time Banks as a nontraditional
    strategy at the community level to enhance opportunity and consumer
    satisfaction with informal caregiving.

-   Increase by 20 percent the funding level for the National Family
    Caregiver Support Program to expand respite care options and improve
    training and support for caregivers. Require improved coordination
    of program activities with other similar program efforts directed to
    support caregivers for individuals with disabilities under age 65.

5\. Improve the supply, retention, and performance of direct support
workers to meet increasing demand.

Implementation Lead:

-   **U.S. House of Representatives, Committee on Education and the
    Workforce**

-   **Senate Committee on Health, Education, Labor, and Pensions**

-   **Departments of Labor, Health and Human Services, and Agriculture**

As demand grows for in-home and community-based support workers, and as
informal caregivers become less available, public policy must pay
increasing attention to critical challenges that relate to direct
care/support employment. NCD researchers documented numerous state
efforts to raise wages, improve quality through education and training,
and change the nature of the relationship between consumer and
caregiver.

The supply, retention, and performance of direct support workers can be
enhanced by implementation of the following set of recommendations:

-   As part of the *Olmstead* guidance, CMS should issue an advisory
    letter to state Medicaid directors directing corrective action to
    achieve parity of compensation across the environments where direct
    support workers are employed. Home- and community-based workers must
    earn wages that are comparable to those of workers who perform
    similar duties in other care settings.

-   Continue to fund demonstration projects by CMS to allow states to
    test innovative strategies to improve the recruitment, supply,
    retention, and performance of direct support workers.

-   Authorize funding for demonstration projects between the Departments
    of Labor and HHS that promote collaboration between community
    colleges and disability-related organizations to develop a
    high-quality set of competencies to be taught in a new support
    worker certificate program that expands supplies of quality workers
    to meet market demand in home- and community-based settings.

-   Pilot test the establishment of additional worker cooperatives with
    the assistance of the Departments of Agriculture, Labor, and HHS, to
    explore improved consumer-caretaker relationships.

6\. Mandate coordination and collaboration among federal agencies to
align public policy and transform infrastructure to be responsive to
consumer needs and preferences for a comprehensive system of LTSS.

Implementation Lead:

-   **Centers for Medicare and Medicaid Services**

-   **Department of Housing and Urban Development (HUD)**

-   **Senate Finance Committee**

-   **Senate Committee on Banking, Housing, and Urban Affairs**

-   **House Subcommittee on Health and Environment**

-   **Department of Transportation**

-   **Social Security Administration**

-   **House Committee on Education and Workforce**

Although Medicaid and Medicare dominate the landscape of funding
authorities for LTC and LTSS, NCD researchers documented the complexity
and fragmentation of multiple systems with different rules of
eligibility and lack of information on access to and availability of
resources. The fragmentation and coordination challenges carry over from
the executive branch to the legislative branch, where different
committees in the Senate have different controlling authority than
committees in the House of Representatives. Although Program Assessment
Rating Tool (PART) reviews by the Office of Management and Budget (OMB)
are incorporating common performance measures across agencies and
programs, **there is no focus on cross-department and agency
collaboration.** The nature of LTSS requires more than a dozen programs
and agencies to improve the coordination of resource at the community
level, where it will benefit the end-user. No single recommendation can
respond to this significant challenge. NCD recommends that the
appropriate agencies and congressional committees implement the
following set of recommendations:

-   Hold congressional hearings to evaluate possible options for
    improvement of collaboration across multiple departments to provide
    access to information and supports and services to meet the
    long-term needs of people with disabilities under and over age 65.

-   Require HUD and HHS to document current efforts and future plans to
    improve and expand the availability of affordable accessible housing
    coordinated with services and supports when needed. Establish an
    Interagency Council on Meeting the Housing and Service Needs of
    Seniors and Persons with Disabilities.[^1012] The council's role
    would be as follows:[^1013] "(4) To improve coordination among the
    housing and service-related programs and services of federal
    agencies for persons with disabilities and seniors and to make
    recommendations about needed changes with an emphasis on (a)
    maximizing the impact of existing programs and services; (b)
    reducing or eliminating areas of overlap and duplication in the
    provision and accessibility of such programs and services; and (c)
    making access to programs and services easier for persons with
    disabilities and seniors around the country; (5) To increase the
    efficiency and effectiveness of existing housing and service related
    programs and services which serve the target populations; (6) To
    establish an ongoing system of coordination among an within such
    agencies or organizations so that the housing and service need are
    met in a more efficient manner. MEMBERSHIP: The council shall be
    composed of the following: (1) the Secretary of Housing and Urban
    Development or a designee of the Secretary; (2) the Secretary of
    Health and Human Services or a designee of the Secretary; (3) the
    Secretary of Agriculture or a designee of the Secretary; (4) the
    Secretary of Transportation or a designee of the Secretary; (5) the
    Secretary of Labor or a designee of the Secretary; (6) the Secretary
    of Veterans Affairs or a designee of the Secretary; (7) the
    Secretary of the Treasury or a designee of the Secretary; (8) the
    Commissioner of the Social Security Administration or a designee of
    the Commissioner; (9) the Administrator of the Centers for Medicare
    and Medicaid Services or a designee of the Administrator; (10) the
    Administrator of the Administration on Aging or a designee of the
    Administrator; (11) the head (or designee) of any other federal
    agency as the council considers appropriate; (12) state and local
    representatives knowledgeable about the needs of the target
    population. CHAIRPERSON: The chairperson of the Council shall
    alternate between the Secretary of Housing and Urban Development and
    the Secretary of Health and Human Services on an annual basis. The
    Council shall prepare an annual status report on activities to the
    President and Congress with policy recommendations."

-   Add to the PART performance criteria indicators that will evaluate
    documented outcomes from intra-agency and cross-agency collaboration
    to meet the LTSS needs of people with disabilities. Consider
    possible financial incentives for agencies that document valued
    outcomes from LTSS system collaboration. Report annually to Congress
    on individual agency performance in this area.

-   Issue a new Executive Order to charge CMS to chair a time-limited
    workgroup (six months) on LTSS that includes representation by HUD,
    HHS, Social Security Administration (SSA), Education, Labor,
    Justice, Transportation, Treasury, and Agriculture to identify
    policy barriers and facilitators to an improved comprehensive
    coordinated system of LTSS for people with disabilities under and
    over age 65 that maximizes interagency collaboration, promotes
    consumer direction, and increases consumer choice and access to
    affordable supports and services in home- and community-based
    settings. The final report to the President would include
    recommendations for policy and practice changes and any appropriate
    program consolidation.

7\. Improve and hold states accountable for rebalancing their system to
support LTSS.

Implementation Lead:

-   **Centers for Medicare and Medicaid Services**

-   **Congressional Budget Office**

-   **General Accountability Office**

Selected states are having success with a global budgeting approach to
move their LTSS systems from an institutional bias to be anchored by
home- and community-based services and supports. CMS Real Choice Systems
Change Grants have accelerated the pace of change in a number of states
that recognize the changing expectations of the consumer population to
have more control and independence with access to appropriate supports.
The consumer population in each state wants more information on the
progress their state is making to rebalance the system and expand their
choices in the most independent setting possible.

-   Develop a template, in consultation with states, to be used to
    evaluate and measure the states' current expenditures for LTSS in
    institutional versus home- and community-based settings. Such a
    template would be developed jointly by CMS and CBO to allow for
    consistent comparative benchmarking from year to year within a state
    and among states. CMS would require an annual updated report that
    would identify expenditures by cost category in terms of
    services/supports, funding streams, and populations. States would be
    expected to achieve an agreed-upon level of improvement annually,
    related to negotiated indicators. A system of rewards would be
    considered that would allow up to a 5 percent increase in federal
    matching funds under the Medicaid program for certain agreed-upon
    LTSS expenditures. CMS would make available on its Web site the
    comparative analysis of state expenditures, according to agreed-upon
    benchmarks.

8\. Increase understanding of the possible relationship between an LTSS
insurance product and publicly financed LTSS.

Implementation Lead:

-   **Centers for Medicare and Medicaid Services**

-   **Assistant Secretary for Planning and Evaluation, Department of
    Health and Human Services**

Congressional interest remains high to understand and explore further
the possible relationship between the current market for LTC insurance
products and a reduced dependence on Medicaid and Medicare for long-term
support needs. With the growing cost of Medicaid and Medicare documented
by NCD researchers, there is growing interest in forging a new level of
partnership with the insurance industry that explores both the expansion
of product options and the possible cost savings to the public system.
For people with disabilities under age 65, no such insurance product yet
exists and little is known about the risk factors in terms of potential
utilization by the target population and how to achieve affordable
pricing. Even with adoption of several of the other major
recommendations proposed in this report, it is unlikely that a revised
Medicaid program will ever meet the needs of all persons who seek LTSS.

-   Conduct a feasibility study of possible new insurance products and
    options regarding their relationship to the Medicaid program to
    evaluate possible strategies to partner an LTSS insurance product
    with supplementary Medicaid coverage for people with disabilities
    under age 65. Consider price, benefit coverage, caps in coverage,
    and eligibility for Medicaid LTSS, as well as project market demand
    and needed incentives to share risk among stakeholders: the
    government, the consumer, and the insurance industry. The possible
    collaboration would include APSE at HHS, CMS, and a private insurer.

-   Pilot test such a product or products to evaluate cost benefits to
    all critical stakeholders. Such a pilot must recognize that LTSS
    must be individualized to accommodate the needs and desires of the
    individuals receiving assistance and that the services and supports
    must reflect consumer preference for noninstitutional settings. Such
    an insurance product must achieve several objectives: be affordable,
    be flexible, respond to consumer needs and preferences, and be
    sustainable over time with federal oversight.

9\. Improve consumer understanding, knowledge, and skills to develop a
person-centered plan and self-direct an individual budget.

Implementation Lead:

-   **Centers for Medicare and Medicaid Services**

-   **Administration on Aging**

-   **Administration on Developmental Disabilities**

-   **Social Security Administration**

The Cash and Counseling Demonstrations and the Independence Plus waivers
have produced early positive findings of increased consumer satisfaction
with the self-direction of individual budgets, the selection of support
providers, and increased choice in the development of person-centered
plans. Individuals with disabilities and their families should be given
the opportunity to plan, obtain, control, and sustain the services that
are best for them in preferred home- and community-based settings. For
people with disabilities who have been given few choices in the past
regarding services, supports, and service delivery options, consumer
self-direction requires information, education, and training to build
the critical skills needed to make informed decisions.

Access to information about service options, streamlined procedures for
determining eligibility for various public benefits, and new
infrastructure will need to be developed to assist with programmatic and
financial management.

The following set of recommendations recognizes the principles of
individual self-direction and responsibility for prudent and effective
management of public resources as critical to the development of the
LTSS system of the future.

-   Continue to provide competitive grants that establish Aging and
    Disability Resource Centers (ADRCs) in all 50 states that provide
    one-stop access to information and individualized advice on
    long-term support options, as well as streamlined eligibility
    determinations for all publicly funded programs. With joint funding
    from CMS and the Administration on Aging, the ADRCs should provide
    education and training to individuals with disabilities on informed
    decision making in the development of person-centered plans and the
    management of individual budgets.

-   Establish, with funding from CMS, a National Resource Center on
    Consumer Self-Direction that identifies and disseminates best
    practice information on person-centered plan development,
    self-directed management of individual budgets, and examples of
    multiple funders braiding funds within an individual budget to
    achieve common negotiated performance objectives. The center should
    also provide assistance to states on methodology for development of
    individual budgets and strategic alliance options with financial
    institutions for the effective and efficient management of resources
    that have been allocated on an individualized basis.

-   Require states as part of their HCBS waiver implementation to
    provide education and training to eligible Medicaid beneficiaries on
    effective and meaningful participation in person-centered planning,
    management of individual budgets, and negotiation with service and
    support providers.

-   Establish a cross-agency workgroup including CMS, the Administration
    on Aging, SSA, the Administration on Developmental Disabilities,
    HUD, the Office of Special Education and Rehabilitative Services at
    the Department of Education, and the Department of Labor to
    accelerate options for states to bundle or braid public funds within
    a self-directed individual budget with streamlined and accelerated
    eligibility procedures. Findings and recommendations shall be made
    to the President and Congress within 90 days, with the report to be
    made public for review and comment.

10\. Continue to educate people with disabilities, their families, and
other critical stakeholders about LTSS challenges in public policy and
practice and document further consumer needs, costs, and preferences for
a comprehensive, accessible, and affordable system.

Implementation Lead:

-   **National Disability Institute/NCB Development Corporation**

-   **A major insurance company**

-   **A major financial service company**

-   **National disability organizations**

-   **American Association of Retired Persons**

-   **National Council on Disability**

This report documents the current crisis and the impending perfect
storm. It is a complex and confusing picture, not easy to grasp and even
more difficult to change as we move forward. NCD must continue to put
the spotlight on this critical set of challenges that, in the next 20
years, may touch over half the population of our country. For people
with unmet LTSS needs today, NCD must continue the public education
process through outreach activities and direct discussion with the
disability community and policymakers.

-   Conduct a series of audio conferences and a national summit of key
    leaders and stakeholders to continue to document the findings and
    build consensus on possible policy and practical solutions.

The focus of the discussion must be based on a core set of principles
identified by the Expert Panel reflecting the following:

-   ***Individual authority***---the ability to manage, direct, and
    control the nature and delivery of supports received.

-   ***Personal choice***---the freedom to choose the services and the
    provider that best meet the person's needs.

-   ***Individual support***---the resources to enable people with
    disabilities, as well as families and seniors, to make informed
    decisions regarding the services received.

-   ***Productivity***---the focus of LTSS must be on giving people the
    assistance they need to live full and productive lives.

-   ***Participation***---people receiving support need to be involved
    at all levels of the decision-making process, from policy to
    implementation.

## Part III The New Millennium LTSS Model

### Year 2049

The United States successfully built a health care and LTSS ship through
an array of public-private funding mechanisms. Many of the demographic
predictions made by economists and policymakers at the beginning of the
21st century did come true. There were fewer workers and more retirees
and fewer federal resources to cover promised benefits. It became
evident by the middle of the 2010s that reform was necessary in Social
Security, Medicare, Medicaid, civil service pensions, and military
pensions. The United States had committed \$25 trillion in future
benefits that were unfunded. Japan, Italy, and Spain experienced
population declines that affected everyone's international trade markets
and increased global workforce shortages.

Business leaders in the United States began to see their profit margins
eroded with the rising costs of health care and were concerned that
their ability to compete globally would decline unless the problem was
solved. Although disability advocates and researchers and policymakers
had tried to put the issue of LTSS and health care on the national
agenda for decades, it was the business community that actually
positioned it for reform.

Today, in 2049, 50 percent of Americans are nonwhite and a majority are
low-income workers. The overall health of Americans is better and many
people are living longer, including people with lifelong disabilities
such as Down syndrome, cerebral palsy, and intellectual impairments.
Life expectancy has increased and, although there are different
configurations of the "family unit," families continue to play an
important role in the care and housing of their members---young and old.
The nursing home facility of the mid- and late 20th century is all but
obsolete, and housing with variations in services is mostly community
based and provided by family members and a new cadre of professionals.
Although the movement in the late 20th century was toward
consumer-directed care in the community, the challenge of finding
affordable housing for many retired Americans and Americans with
disabilities, including appropriate and affordable services and
supports, remained a large barrier. Many Americans had not saved or
insured adequately against the costs of aging, retirement, or
disability. In 2005, LTSS public policy depended on many variables
falling into place. Even if an individual or family met the income and
disability eligibility criteria for LTSS, many states could not afford
to offer the necessary services and supports because of budget deficits.
Because Medicaid programs were state-specific, many people with
disabilities could not move their LTSS benefit from one state to
another. The country was not prepared to address the health and service
and support needs of its fast-growing demographics, which included more
working individuals under the age of 65 with disabilities and the
doubling of its senior population. Many middle-income seniors had
nowhere to turn but to Medicaid, and state and federal spending fast
became unsustainable.

Disability rates did decline for the senior population, as predicted in
2005. Even for those 85 and older, modern medicine and technology began
to eradicate diseases associated with aging, such as Alzheimer's, visual
and hearing impairments, and other physical conditions that once limited
mobility. Scientific breakthroughs for diabetes, obesity, and mental
illness helped to decrease the incidence of chronic disabilities in the
under-65 population as well. The incidence of lifelong disabilities,
such as cerebral palsy and Down syndrome, were unchanged, but new
insurance products became available and through shared risk pools were
helpful in defraying the costs of living with a lifelong disability.
Individuals with disabilities were no longer expected to live in
impoverishment to receive assistance for the additional costs associated
with compensating for limitations in ADLs. Unemployment for people with
disabilities declined as increased services and supports were provided.
The workplace became more accessible for people with disabilities as
technology increased its accessibility and employers became adept at
providing the necessary accommodations.

Today, in 2049, health care policy is universal and includes a basic
menu of services focused primarily on prenatal care, prevention
services, routine checkups, prescription drug management, and nonmedical
services and supports. Healthy environments and healthy behaviors are
considered the centerpiece for a healthy country. All Americans now have
access to an array of basic health services that are mandatory, similar
to the requirement that all drivers had automobile insurance during the
second half of the 20th century. The disproportionate costs for health
services for the uninsured declined as the new system focused on quality
outcomes and cost management and universal coverage. However, boutique
health care continued to grow and is now a popular alternative for many
Americans with private resources; it includes personalized health
services from spa membership to monthly plastic surgery treatments to
home visits by a physician.

HCBS replaced the institutional nursing home model of the mid-20th
century and regional centers provided neighborhood triage and mobile
units to reduce the costs of transportation and manage costs and
outcomes. Housing for seniors and people with disabilities emerged that
linked independent living with choice and new options. Group homes were
converted into cooperatives, and individuals with disabilities became
shareowners in an array of alternative housing models that promoted
equity. Unemployment for people with disabilities declined and, for the
first time in a century, working Americans included many individuals
with disabilities.

The movement toward health care reform, including LTSS, began in 2005 as
a small group of researchers and policymakers unveiled a new model for
the LTSS ship "AmeriWell," which provided a new roadmap for innovative
funding and product development for people with disabilities.

## Part IV AmeriWell---The New Millennium LTSS Model

Implementation Lead:

-   **Center for Medicaid Services**

-   **Congressional Committee on LTSS**

-   **Wall Street investment firms**

-   **Major health insurance companies**

-   **National Academy of Science**

-   AmeriWell is a prefunded, mandatory LTSS system that provides all
    Americans of any age with coverage from birth based on criteria of
    risk and functioning and not category of disability. AmeriWell
    delinks LTSS from Medicaid and Medicare, creating its own governing
    agency, regulations, oversight, and congressional committee.

-   The AmeriWell Center is the third division of CMS and is required to
    produce an annual report to the President and Congress that provides
    an update on fiscal and programmatic status.

-   AmeriWell Part A begins with a individual/family account established
    at birth for all Americans. AmeriWell Part A provides LTSS for all
    Americans of all ages based on criteria of risk and functioning and
    not ability to pay. AmeriWell Part A is funded through
    individual/family contributions made to individual/family-assigned
    accounts beginning at birth with premiums paid by wage earners on a
    sliding scale and assessment of functioning and risk. A basic LTSS
    menu provides services and supports most desired and utilized by
    people with disabilities, whether working or retired.

-   AmeriWell Part B will provide LTSS and health care and prescription
    drugs for individuals who are both Medicare and Medicaid eligible
    because of poverty and disability status.

-   Every American has an AmeriWell Account Plan (AWAP) that is an
    actuarially agreed-upon amount adjusted for inflation over time
    based on the cost projections of a specific lifelong disability,
    such as cerebral palsy, Down syndrome, or a physical impairment. In
    addition, an individual is assessed as to risk and functioning over
    time for any benefit adjustment. For example, a person with cerebral
    palsy who needs help with two ADLs but is functioning well on his or
    her own is given the necessary services and supports for work.
    Assuming that this person is not considered at immediate risk or
    need of other services, he or she is assigned a capped amount based
    on this data.

-   Each child is given an AmeriWell account at birth, funded by the
    parent wage earner. If a child is born with a significant
    disability, the parental account that has accrued over time will be
    opened and used for the child. If a child has no parents, AmeriWell
    Part B will kick in and provide a defined amount of services and
    support based on the individual's AWAP.

-   The AmeriWell premiums are set aside in an AmeriWell Trust Fund that
    has public-private oversight and provides a financial pool to cover
    LTSS.

-   Individuals and families also have the option to create private
    AmeriWell Freedom Accounts that are tax deductible up to \$10,000
    per year. These accounts are similar to the college 529 plans, and
    each state has the option of teaming up with private investment
    firms to offer choices regarding investment options, flexible and
    guaranteed rate of return, and/or annuities.

-   AmeriWell Part B raises revenue through a sales commission levied on
    daily stock transactions to create a fund (Penny Pool) to defray the
    disproportionate share of care provided to uninsured/underinsured,
    dual-eligible persons (those who receive both Medicare and
    Medicaid). The Penny Pool helps states meet the needs of
    impoverished individuals with disabilities and the aging.

-   AmeriWell allows Medicaid to stay true to its original mission to
    serve as a safety net for low-income mothers, children, and people
    under age 65 and provides a buy-in option for individuals who are
    working with a disability, who are working but do not have insurance
    on the job, or who lose coverage because of a lost job. All aging
    and disability populations (30% of the Medicaid caseload in 2005)
    have been moved into AmeriWell.

-   AmeriWellPlus is a program for Social Security Disability Insurance
    beneficiaries and dependent recipients who previously fell under
    Medicare. This account provides LTSS, health insurance, and
    prescription drugs, and its funding is shared with Medicare and the
    Penny Pool.

-   AmeriWell is a national program and provides LTSS portability from
    one state to another.

# ![](media/image5.png){width="5.533464566929134in" height="3.627952755905512in"}  {#section-44 .unnumbered}

# References

[^1]: O'Shaughnessy, C. (2003). Long-Term Care Chart Book: Persons
    Served, Payers and Spending. Congressional Research Service: The
    Library of Congress (RS21518). P. 3

[^2]: Finding added and not part of main body of research. Government
    Accountability Office. (June 2005). Federal Disability Assistance:
    Wide Array of Programs Needs To Be Examined in Light of 21^st^
    Century Challenges. Washington, DC: GAO (GAO-05-626). P. 5.

[^3]: Medicaid Reform A Preliminary Report from the National Governors
    Association. June 15, 2005.

[^4]: Finding added and not part of main body of research. Refers to
    Office of Management and Budget Circular A-87 that establishes cost
    principles for federal grants to state governments. April 2005.
    Department of Health and Human Services: Office of the Inspector
    General. Review of the Oklahoma Department of Human Services'
    Medicaid Administrative Costs. A-06-03-00046.

[^5]: Language added to U.S. Senate Bill, 109^th^ Congress---S.B. 705 to
    include people with disabilities: Establish an Interagency Council
    on Meeting the Housing and Service Needs of Seniors, April 5, 2005,
    to include people with disabilities.

[^6]: Checkland, P.B. (1999). *Soft Systems Methodology: A 30- Year
    Retrospective.* Toronto: John Wiley & Son, Ltd.

[^7]: Checkland, P.B. (1981). *Systems Thinking, Systems Practice.*
    Toronto: John Wiley & Sons, Ltd.

[^8]: Ausubel, D.P. (2000). *The Acquisition and Retention of Knowledge:
    A Cognitive View.* Dordrecht, Netherlands: Kluwer Academic
    Publishers.

[^9]: Senge, P., Kleiner, A., Roberts, C., Ross, R., & Smith, B. (1994).
    *The Fifth Discipline Fieldbook: Strategies and Tools for Building a
    Learning Organization.* New York: Doubleday.

[^10]: Lakdawalla, D., Bhattacharya, J., & Goldman, D. (2001). Are the
    Young Becoming More Disabled? National Bureau of Economic Research.

[^11]: O'Shaughnessy, C. (2003). Long-Term Care Chart Book: Persons
    Served, Payers and Spending. Congressional Research Service: The
    Library of Congress (RS21518). P. 3.

[^12]: Longman, P. (2004). *The Empty Cradle: How Falling Birthrates
    Threaten World Prosperity and What to Do About It.* New America Book
    published by Basic Books: New York. P. 154.

[^13]: Walker, D. (2004). The National Growing Fiscal Imbalance.
    Comptroller General of the United States, U.S. Government
    Accountability Office.

[^14]: Congressional Budget Office. (April 2004). Financing Long-Term
    Care for the Elderly. The U.S. Congress.

[^15]: National Endowment for Financial Education. (2002). Long-Term
    Care: Our Next National Crisis? A Meeting Sponsored by the National
    Endowment for Financial Education, Scottsdale, Arizona, May 6--8,
    2001.

[^16]: Ibid.

[^17]: American Association of Homes and Services for the Aging.
    (October 18, 2002). *Public Policy: Issue Updates*. (Contact Lousie
    Maus, AAHS Public Policy Associate at Lmaus@aahsa.org for a copy.)
    Washington, DC: American Association of Homes and Services for the
    Aging.

[^18]: Ibid.

[^19]: National Governors Association. (August 13, 2004). A Lifetime of
    Health and Dignity: Confronting Long-Term Care Challenges in
    America. P. 3. www.subnet.nga.org.ci.2-financial.hgtml.

[^20]: McCall, N., Korb, J. (2001). Chapter 8: What Have We Learned from
    the Partnership for Long-Term Care? In Ed. McCall, *Who Will Pay for
    Long-Term Care: Insights from the Partnership Programs.* Chicago:
    Health Administration Press.

[^21]: Ibid., 178

[^22]: A Profile of Older Americans: 2000. Administration on Aging, U.S.
    Department of Health and Human Services. P. 9.

[^23]: Ibid., 4.

[^24]: Ibid.

[^25]: American's Health Insurance Plans: 2004. Post-Election Survey
    Regarding Health Care Issues: Ayres, McHenry & Associates, Inc. Pp.
    1--2.

[^26]: Durenberger, D. (2003). Long-Term Care Policy in the New Reality.
    In Eds. Blumental, Moon, Washawsky, & Boccuti, *Long-Term Care and
    Medicare Policy -- Can We Improve the Continuity of Care?* National
    Academy of Social Insurance. Brookings Institution Press. Pp.
    120--128.

[^27]: Ibid., 2. Quoting Kaiser Commission on Medicaid and the
    Uninsured, January 2003.

[^28]: Ibid., 2.

[^29]: Durenberger, D. (2003). Long-Term Care Policy in the New Reality.
    In Eds. Blumental, Moon, Washawsky, & Boccuti, *Long-Term Care and
    Medicare Policy -- Can We Improve the Continuity of Care?* National
    Academy of Social Insurance. Brookings Institution Press. Pp.
    120--126.

[^30]: Press Release, January 11, 2005. Governor Bush announces plan to
    transform Medicaid: Proposals to put patients first. Empowered care
    -- putting patients first. www.empoweredcare.com/press01112005.aspx

[^31]: Stone, R. (2003). Reality of Caring for the Long-Term Care
    Population. In Eds. Blumental, Moon, Washawsky, & Boccuti,
    *Long-Term Care and Medicare Policy -- Can We Improve the Continuity
    of Care?* National Academy of Social Insurance. Brookings
    Institution Press. Pp. 40--47.

[^32]: Silberner, J. (2003). Comment on Part Three: Prospects for
    Long-Term Care Policymaking at State and Federal Levels. In Eds.
    Blumental, Moon, Washawsky, & Boccuti, *Long-Term Care and Medicare
    Policy -- Can We Improve the Continuity of Care?* National Academy
    of Social Insurance. Brookings Institution Press. Pp. 127--128.

[^33]: Velgouse L., & Dworken, M. (2002). *Olmstead* Update. An Update
    on Activities Related the *Olmstead* Decision: *Olmstead* State
    Plans Real Systems Change Grants. New Freedom Initiative: AAHSA
    Collaborations and Activities.

[^34]: National Council on Disability. (August 19, 2003). *Olmstead*:
    *Reclaiming Institutionalized Lives*. Washington, DC.

[^35]: Hudson, R.B. (1997). *The Future of Age-Based Public Policy.*
    Baltimore and London: The Johns Hopkins University Press.

[^36]: Kane, R. (2001). Long-Term Care and a Good Quality of Life:
    Bringing Them Closer Together. *The Gerontologist*, 41(3): 293--304.
    Stanford, CA: Stanford University.

[^37]: Kane, R.A., & Kane, R. L. (1987). *Long-Term Care: Principles,
    Programs, and Policies.* New York: Springer Publishing Company.

[^38]: Mahoney, K.J., & Simon-Rusinowitz, L. (1997). Cash and Counseling
    Demonstration and Evaluation: Start-Up Activities. *Journal of Case
    Management*, 6: 25--31.

[^39]: Kane, R. (2001). Long-Term Care and a Good Quality of Life:
    Bringing Them Closer Together. *The Gerontologist*, 41, 3, 293--304.
    Stanford, CA: Stanford University.

[^40]: Nerney, T., & Shumaway, D. (1996). *Beyond Managed Care:
    Self-determination for People with Disabilities.* Concord, NH:
    Institute on Disability, University of New Hampshire.

[^41]: Assisted Living Workgroup. (April 2003). Assuring Quality in
    Assisted Living: Guidelines for Federal and State Policy, State
    Regulation, and Operations. Report to the U.S. Senate Special
    Committee on Aging, Washington, DC.

[^42]: Longman, P. (2004). *The Empty Cradle. How Falling Birthrates
    Threaten World Prosperity and What to Do About It.* New York: Basic
    Books.

[^43]: Jonas, S., & Kovner, A.R. (2003). *Health Care Delivery in the
    United States.* Seventh Edition. New York: Springer Publishing
    Company. P. 461.

[^44]: Ibid., 135.

[^45]: Ibid.

[^46]: Longman, P. (1996). *The Return of Thrift: How the Coming
    Collapse of the Middle-Class Welfare State Will Reawaken Value in
    America.* New York: The Free Press.

[^47]: Rosner, D. (1982). Health Care for the "Truly Needy":
    Nineteenth-Century Origins of the Concept. *Milbank Memorial Fund
    Quarterly: Health and Society*, 60(Summer): 355.

[^48]: Jonas, S., & Kovner, A.R. (2003). *Health Care Delivery in the
    United States.* Seventh Edition. New York: Springer Publishing
    Company. Pp. 124--125.

[^49]: Lundberg, G.D. (2002). *Severed Trust. Why American Medicine
    Hasn't Been Fixed.* New York: Basic Books. P. 57.

[^50]: Young, I.M. (1990). *Justice and the Politics of Difference.* New
    Jersey: Princeton University Press.

[^51]: Hartnett, J.T. (1999). Toward a Philosophy of Difference: An
    Analysis of Vermont's Obligations to Establish Entitlement for
    Adults with Developmental Disabilities. University of Vermont.

[^52]: Ibid.

[^53]: Young, I.M. (1990). *Justice and the Politics of Difference.* New
    Jersey: Princeton University Press. P. 6.

[^54]: Bringewatt, R. (2003). *Long-Term Care and Medicare Policy: Can
    We Improve the Continuity of Care?* Eds. Blumental, Moon,
    Warshawsky, & Boccuti. Comment Paper on How Might We Meet Tomorrow's
    Needs for Chronic and Long-Term Care? Pp. 232--235.

[^55]: Consortium of Citizens with Disabilities. (March 10, 2004).
    Letter to U.S. Senators. www.c-c-d.org/2005Medicaid.htm.

[^56]: Buhler-Wilkerson, K. (2003). *No Place Like Home: A History of
    Nursing and Home Care in the United States.* Baltimore: John Hopkins
    University Press.

[^57]: Gray, P. (1969). *The Enlightenment.* New York: W.W. Norton &
    Company.

[^58]: Ibid., 33.

[^59]: Starr, P. (1982). *The Social Transformation of American
    Medicine.* New York:

    Basic Books.

[^60]: Hartnett, J.T. (1992). *The Funeral an Endangered Tradition:
    Making Sense of the Final Farewell.* Vermont: Good Mourning Press.

[^61]: Buhler-Wilkerson, K. (2003). *No Place Like Home: A History of
    Nursing and Home Care in the United States. Baltimore:* John Hopkins
    University Press.

[^62]: Jonas, S., & Kovner, A.R. (2003). *Health Care Delivery in the
    United States.* Seventh Edition. New York: Springer Publishing
    Company. P. 147.

[^63]: Aries, P. (1975). *Western Attitudes toward Death.* Baltimore:
    John Hopkins University Press.

[^64]: Nord, W.A. (1995). *Religion and American Education. Rethinking a
    National Dilemma.* Chapel Hill & London: The University of North
    Carolina Press.

[^65]: Jonas, S., & Kovner, A.R. (2003). *Health Care Delivery in the
    United States.* Seventh Edition. New York: Springer Publishing
    Company. Pp. 246--252.

[^66]: DeSpelder, L.A., & Strickland, A.L. (1997). *The Last Dance.*
    Mountain View, CA: Mansfield Publishing Company.

[^67]: Jonas, S., & Kovner, A.R. (2003). *Health Care Delivery in the
    United States.* Seventh Edition. New York: Springer Publishing
    Company.

[^68]: D'Agostino, L. (1948). *The History of Public Welfare in
    Vermont.* Winooski, VT: St. Michael's College Press.

[^69]: Stone, D. (1983). *The Disabled State.* Philadelphia: Temple
    University Press.

[^70]: Carlisle, L.B. (1965). Mental Retardation in Vermont, A
    Chronology of Changing Attitudes. Vermont Mental Retardation
    Planning Report, Pavilion Hotel: Montpelier, VT.

[^71]: D'Agostino, L. (1948). *The History of Public Welfare in
    Vermont.* Winooski, VT: St. Michael's College Press.

[^72]: Jonas, S., & Kovner, A.R. (2003). *Health Care Delivery in the
    United States.* Seventh Edition. New York: Springer Publishing
    Company.

[^73]: Ibid.

[^74]: Buhler-Wilkerson, K. (2003). *No Place Like Home: A History of
    Nursing and Home Care in the United States.* Baltimore: John Hopkins
    University Press.

[^75]: Jonas, S., & Kovner, A.R. (2003). *Health Care Delivery in the
    United States.* Seventh Edition. New York: Springer Publishing
    Company. P. 252.

[^76]: Lacey, D. (1999). The Evolution of Care: A 100-Year History of
    Institutionalization of People with Alzheimer's Disease. *Journal of
    Gerontological Social Work*, 31(3/4).

[^77]: Stone, Julie Lynn. (July 5, 2002). Medicaid: Eligibility for the
    Aged and Disabled. Washington, DC: Congressional Research Service
    (CRS RL31413).

[^78]: Kassner, Enid, & Bectel, R.W. (1998). Midlife and Older Americans
    with Disabilities: Who Gets Help? A Chartbook. The Public Policy
    Institute, Research Group: American Association of Retired Persons.

[^79]: Stone, Julie Lynn. (July 5, 2002). Medicaid: Eligibility for the
    Aged and Disabled. Washington, DC: Congressional Research Service
    (CRS RL31413).

[^80]: Ibid., 8.

[^81]: AARP. (2004). *Long-Term Services and Supports.* The Policy Book,
    Chapter 7: AARP Public Policies. Washington, DC: AARP.

[^82]: O'Shaughnessy, C. (2003). Long-Term Care Chart Book: Persons
    Served, Payers and Spending. Congressional Research Service: The
    Library of Congress (RS21518).

[^83]: Congressional Budget Office. (2004). Financing Long-Term Care for
    the Elderly. Congress of the United States.

[^84]: Redfoot, D.L., & Pandya, S.M. (2002). *Before the Boom: Trends in
    Long-Term Supportive Services for Older Americans with
    Disabilities.* Washington, DC: AARP Public Policy Institute.

[^85]: O'Shaughnessy, C. (2003). Long-Term Care Chart Book: Persons
    Served, Payers and Spending. Congressional Research Service: The
    Library of Congress (RS21518).

[^86]: Lakdawalla, D., Bhattacharya, J., & Goldman, D. (2001). Are the
    Young Becoming More Disabled? National Bureau of Economic Research.

[^87]: Burwell B.O., & Jackson, B. (1994). The Disabled Elderly and
    Their Use of Long-Term Care. U.S. Department of Health and Human
    Services, Washington, DC.

[^88]: Hudson, R.B. (1997). *The Future of Age-Based Public Policy.*
    Baltimore and London: The Johns Hopkins University Press.

[^89]: Kane, R. (2001). Long-Term Care and a Good Quality of Life:
    Bringing Them Closer Together. *The Gerontologist*, 41, 3, 293--304.
    Stanford, CA: Stanford University.

[^90]: Kane, R.A., & Kane, R.L. (1987). *Long-Term Care: Principles,
    Programs, and Policies.* New York: Springer Publishing Company.

[^91]: Jonas, S., & Kovner, A.R. (2003). *Health Care Delivery in the
    United States.* Seventh Edition. New York: Springer Publishing
    Company. P. 200.

[^92]: Ibid.

[^93]: Stone, Julie Lynn. (July 5, 2002). Medicaid: Eligibility for the
    Aged and Disabled. Washington, DC: Congressional Research Service
    (CRS RL31413).

[^94]: Ibid.

[^95]: Ibid.

[^96]: Ibid.

[^97]: American Health Care Association -- Health Services Research and
    Evaluation. (June 2003). Nursing Facility Total, Average and Median
    Number of Patients per Facility and ADL Dependence. Available at
    www.ahca.org. Washington, DC: American Health Care Association.

[^98]: *2001 Urban Institute Long-Term Care Chart Book.*

[^99]: Stone, Julie Lynn. (July 5, 2002). Medicaid: Eligibility for the
    Aged and Disabled. Washington, DC: Congressional Research Service
    (CRS RL31413).

[^100]: Ibid.

[^101]: See footnote 26.

[^102]: Hudson, R.B. (1997). *The Future of Age-Based Public Policy.*
    Baltimore and London: The Johns Hopkins University Press.

[^103]: Kane, R. (2001). Long-Term Care and a Good Quality of Life:
    Bringing Them Closer Together. *The Gerontologist*, 41, 3, 293--304.
    Stanford, CA: Stanford University.

[^104]: Stapleton, D.C., & Burkhauser, R.V. (2003). *The Decline in
    Employment of People with Disabilities: A Policy Puzzle.* Kalamazoo,
    Michigan: Upjohn Institute for Employment Research. Chapter 6:
    Employment and the Changing Disability Population. Ed. H. Stephen
    Kaye. P. 217--55.

[^105]: Ibid., 229.

[^106]: Regulations currently define SGA for both the SSDI and SSI
    programs as employment that produces countable earnings of more than
    \$810 a month for nonblind disabled individuals. The SGA level is
    indexed to the annual wage index. The SGA level for SSDI blind
    individuals, set by statute and also indexed to the annual wage
    index, is currently defined as monthly countable earnings that
    average more than \$1,350.

[^107]: Government Accountability Office. (2002). SSA and VA Disability
    Programs: Re-examination of Disability Criteria Needed to Help
    Ensure Program Integrity. Washington, DC: GAO (GAO 02-597).

[^108]: Sweeney, E. (2004). How Do the EITC and CTC Interact with Public
    Benefits? Center on Budget and Policy Priorities.

[^109]: Title II of the Social Security Act is administered by the
    Social Security Administration. Title II appears in the United
    States Code as §§401-433, subchapter II, chapter 7, Title 42.

[^110]: 42 U.S.C. § 401 (1994) (amended 1999).

[^111]: Social Security Disability Planner Home Page. Accessed 2004.
    Available at www.ssa.gov/dibplan/index.htm.

[^112]: Catalog of Federal Domestic Assistance. General Services
    Administration, Office of Governmentwide Policy, Office of
    Acquisition Policy, Regulatory and Federal Assistance Publication
    Division. www.cfda.gov.

[^113]: Ibid., 217.

[^114]: Ibid., 341--42

[^115]: Title XVI appears in the United States Code as §§1381 note-1385
    note, subchapter XVI, chapter 7, Title 42.

[^116]: 42 U.S.C. §§ 1381-1383c (1994) (§§ 1382-1382b, 1382d, 1382e,
    1383, 1383b amended 1999; § 1382c amended 1997; § 1383c amended
    1996).

[^117]: Supplemental Security Income Home Page. Accessed 2004. Available
    at www.ssa.gov/notices/supplemental-security-income/.

[^118]: Ibid.

[^119]: Catalog of Federal Domestic Assistance. General Services
    Administration, Office of Governmentwide Policy, Office of
    Acquisition Policy, Regulatory and Federal Assistance Publication
    Division. www.cfda.gov.

[^120]: Ibid.

[^121]: Gold, S. (2005). Social Security Debate and People with
    Disabilities. Information Bulletin No. 77.

[^122]: Tu, H.T. (2004). Rising Health Costs, Medical Debt and Chronic
    Conditions. Center for Studying Health System Change. Issue Brief.
    No. 88.

[^123]: Eichner, J., & Blumenthal, D., Eds. (2003). *Medicare in the
    21^st^ Century: Building a Better Chronic Care System.* Washington,
    DC: National Academy of social Insurance.

[^124]: Ibid.

[^125]: Ibid.

[^126]: Ibid., 27.

[^127]: Menton, K.G. (2004). Forecasting the Nursing Home Population.
    *Medical Care*, 41(1): 221--24.

[^128]: Miller, E. (2001). Federal and State Initiatives to Integrate
    Acute and Long-Tem Care: Issues & Profiles. Washington, DC:
    Congressional Research Service (RL30813). P. 4.

[^129]: Ibid.

[^130]: Tritx, K., & Lindley, M. (2004). Dual Eligibles: Medicaid
    Expenditures for Prescription Drugs and Other Services. Washington,
    DC: Congressional Research Service (RL31987).

[^131]: Ibid.

[^132]: Rizzolo, M., Hemp, R., Braddock, D., & Pomeranz-Essley, A.
    (2004). The State of the Stats in Developmental Disabilities.
    Department of Psychiatry and Coleman Institute for Cognitive
    Disabilities: The University of Colorado; Washington, DC: American
    Association on Mental Retardation.

[^133]: Ibid., 31.

[^134]: Mendelsohn, S. (2005). Asset Accumulation and People with
    Disabilities: The Role and Potential of the Income Tax Law.
    \[Pending publication\].

[^135]: Honeycutt, A., Grosse, S., Dunlap, L., Schendel, D., Chen, H.,
    Brann, E., & al Homsi, G. (2002). Economic Costs of Mental
    Retardation, Cerebral Palsy, Hearing Loss, and Vision Impairment.
    National Center on Birth Defects and Developmental Disabilities,
    Centers for Disease Control and Prevention, Atlanta, GA.

[^136]: Mendelsohn, S. (2005). Asset Accumulation and People with
    Disabilities: The Role and Potential of the Income Tax Law.
    \[Pending publication\].

[^137]: Ibid., 6.

[^138]: Ibid.

[^139]: Larson, S., Lakin, C., & Huang, J. (2003). Service Use by and
    Needs of Adults with Functional Limitations or ID/DD in the NHIS-D:
    Difference by Age, Gender, and Disability. DD Data Brief. University
    of Minnesota: Research and Training Center on Community Living,
    Institute on Community Integration.

[^140]: Ibid., 21.

[^141]: Ibid.

    ^?^ Ibid., 22.

[^142]: Ibid.

[^143]: The Henry J. Kaiser Family Foundation. (December 2003).
    Understanding the Health-Care Needs and Experiences of People with
    Disabilities.

[^144]: National Endowment for Financial Education. (2002). Long-Term
    Care: Our Next National Crisis? A Meeting Sponsored by the National
    Endowment for Financial Education, Scottsdale, Arizona, May 6--8,
    2001. P. 3.

[^145]: Ibid.

[^146]: Neal, M.B., & Wagner, D.L. (2001). Working Caregivers: Issues,
    Challenges, and Opportunities for the Aging Network. NFCSP Issue
    Brief.

[^147]: Stone, R.I. (August 2000). Long-Term Care for the Elderly with
    Disabilities: Current Policy, Emerging Trends, and Implications for
    the Twenty-First Century. Available at:
    www.milbank.org/reports/008stone/index.html). New York, NY: Milbank
    Fund. P. 11.

[^148]: Ibid.

[^149]: Ibid.

[^150]: Ibid., 9.

[^151]: Lechner, V. (1993). Racial Group Responses to Work and Parent
    Care. Families in Society. *Journal of Contemporary Human Services*,
    74: 93--103.

[^152]: See footnote 20, Neal and Wagner. (2001).

[^153]: American Association for Homes and Services. (2002). Issue
    Updates. Washington, DC.

[^154]: National Alliance for Caregiving and AARP. (2004) Caregiving in
    the U.S. Available at:
    [www.caregiving.org/04finalreport.pdf](http://www.caregiving.org/04finalreport.pdf).
    (Last viewed: January 19, 2005.)

[^155]: Arno, P.S. (February 2004). Caregiving in the U.S. Presented at
    Economic Value of Informal Caregiving. Annual meeting of the
    American Association of Geriatric Psychiatry, Orlando, FL.

[^156]: National Alliance for Caregiving and AARP. (2004) Caregiving in
    the U.S. Available at:
    [www.caregiving.org/04finalreport.pdf](http://www.caregiving.org/04finalreport.pdf).
    (Last viewed: January 19, 2005.)

[^157]: Ibid., 9.

[^158]: Ibid*.*

[^159]: National Alliance for Caregiving and AARP. (2004) Caregiving in
    the U.S. Available at:
    [www.caregiving.org/04finalreport.pdf](http://www.caregiving.org/04finalreport.pdf).
    (Last viewed: January 19, 2005.)

[^160]: Ibid., 14.

[^161]: Ibid., 44.

[^162]: Ibid., 47.

[^163]: Government Accountability Office. (1994). Long-Term Care:
    Diverse, Growing Population Includes Millions of Americans of All
    Ages. Washington, DC: GAO (GAO/HEHS 95-26).

[^164]: Altman, B.M., Cooper, P.F., & Cunningham, P.J. (1999). The Case
    of Disability in the Family: Impact on Health Care Utilization and
    Expenditures for Non-disabled Members. *Milbank Quarterly*, 77(1):
    39--75.

[^165]: National Alliance for Caregiving and Brandeis University
    National Center on Women and Aging. (1999). The MetLife Juggling Act
    Study: Balancing Caregiving with Work and the Costs Involved.
    Westport, CT: MetLife Mature Market Institute.

[^166]: Abelson, A.G. (1999). Economic Consequences and Lack of Respite
    Care. *Psychological Reports*, 85: 880--82; Sherman, B.R. (1995).
    Impact of Home-Based Respite Care on Families of Children with
    Chronic Illnesses. *Children's Health Care*, 24(1): 33--45; Theis,
    S.L., Moss, J.H., & Pearson, M.A. (1994). Respite for Caregivers: An
    Evaluation Study. *Journal of Community Health Nursing*, 11(1):
    31--34; and Zarit, S.H., Parris Stephens, M.S., Townsend, A., &
    Greene, R. (1998). Stress Reduction for Family Caregivers: Effect of
    Adult Day Care Use. *The Journal of Gerontology*, 53B(5):
    S267--S277.

[^167]: Feinberg, L.F., Newman, S.L., & Van Steenberg, C. (2002). Family
    Caregiver Support: Policies, Perceptions and Practices in 10 States
    Since Passage of the National Family Caregiver Support Program. San
    Francisco: Family Caregiver Alliance.

[^168]: ASPE, CMS, HRSA, DOL Office of the Assistant Secretary for
    Policy; BLS & ETA. (2003). Future Supply of Long-term Care Workers
    in Relation to the Aging Baby Boom Generation: Report to Congress.
    Washington, DC: ASPE.

[^169]: Feinberg, L., Horvath, J., Hunt, G., Plooster, L., Kagan, J.
    Levine, C., Lynn, J., Mintz, S., & Wilkinson, A. (December 1, 2003).
    Family Caregiving and Public Policy Principles. Bethesda, MD:
    National Alliance for Caregiving. Available at
    [www.caregiver.org/caregiver/jsp/content/pdfs/op_2004_principles.pdf](http://www.caregiver.org/caregiver/jsp/content/pdfs/op_2004_principles.pdf).
    (Last viewed: January 19, 2005.)

[^170]: Results of the 2003 National Survey of State Initiatives on the
    Long-Term Care Direct-Care Workforce. (March 2004). New York:
    Paraprofessional Healthcare Institute & North Carolina Department of
    Health and Human Services' Office of Long-term Care.

[^171]: Ibid., 5.

[^172]: Donelan, K., et al. (2002). Challenged To Care: Informal
    Caregivers in a Changing Health Care System. *Health Affairs*,
    (July/August): 222--31.

[^173]: Ibid.

[^174]: HHS Launches Demonstrations to Recruit and Retain Personal
    Assistance Workers to Help People with Disabilities. (October 2,
    2003). Available at:
    [www.hhs.gov/news/press/2003pres/20031002.html](http://www.hhs.gov/news/press/2003pres/20031002.html).
    (Last viewed: January 19, 2005.)

[^175]: Paraprofessonal Healthcare Institute & North Carolina Department
    of Health and Human Services' Office of Long-Term Care. (March
    2004). Results of the 2003 National Survey of State Initiatives on
    the Long-Term Care Direct-Care Workforce. Bronx, NY:
    Paraprofessional Healthcare Institute.

[^176]: Ibid.

[^177]: Ibid.

[^178]: Holzer, H. (2003). Modeling the Future Supply and Demand for
    Long-Term Care Workers. Washington, DC: American Association of Home
    and Services for the Aging.

[^179]: New Freedom Initiative. (2001). "Fulfilling America's Promise to
    Americans with Disabilities." Available at:
    [www.hhs.gov/newfreedom](http://www.hhs.gov/newfreedom). (Last
    viewed: January 19, 2005.)

[^180]: Memorandum from Thomas M. Reilly to the Performance Measurement
    Advisory Council (February 11, 2003). Available at:
    [www.whitehouse.gov/omb/budintegration/pmac_3-3-03draft.html](http://www.whitehouse.gov/omb/budintegration/pmac_3-3-03draft.html).
    (Last viewed: January 19, 2005.)

[^181]: Ibid.

[^182]: President's Committee on People with Intellectual Disabilities.
    (2004). A Charge We Have to Keep: A Road Map to Personal and
    Economic Freedom for People with Intellectual Disabilities in the
    21^st^ Century. Washington, DC: PCPID.

[^183]: Ibid., 19.

[^184]: Weiner, W. (2003). *Long-Term Care and Medicare Policy: Can We
    Improve the Continuity of Care?* Eds. Blumental, Moon, Warshawsky, &
    Boccuti. Comment paper on How Might We Meet Tomorrow's Needs for
    Chronic and Long-Term Care?

[^185]: Stone-Axelrad, J. (2004). Long-Term Care Insurance Partnership
    Program. CRS Report to Congress. Washington, DC: Congressional
    Research Service (RL32610).

[^186]: The Long-Term Care Insurance Partnership Program provides that
    people who have exhausted (or used a least some of) their private
    long-term care insurance benefits may qualify for Medicaid,
    including its coverage for long-term care benefits, without having
    to meet the same means-testing requirements applicable to other
    groups of Medicaid eligibles. See footnote 152, P. 25.

[^187]: Ibid., 1.

[^188]: The Fiscal Survey of States. (December 2003). National Governors
    Association and National Association of State Budget Officers.

[^189]: National Governors Association. (August 13, 2004). A Lifetime of
    Health and Dignity: Confronting long-term care challenges in
    America. Available at: www.subnet.nga.org.ci.2-financial.hgtml.

[^190]: Ku, L., & Nimalendran, S. (December 22, 2003). *Losing Out:
    States Are Cutting 1.2 to 1.6 Million Low-Income People from
    Medicaid, SCHIP and Other State Health Insurance Programs. Center on
    Budget and Policy Priorities.*

[^191]: Coleman, B., Fox-Grage, W., & Folkemer, D. (2003). State
    Long-Term Care: Recent Developments and Policy Directions -- 2003
    Update. National Conference of State Legislatures.

[^192]: Ibid., 1.

[^193]: Hoffman, E., Klees, B, & Curtis, C. (2003). Brief Summaries of
    Medicare & Medicaid: Title XVII and Title XIX of the Social Security
    Act as of November 1, 2003. Office of the Actuary: Centers for
    Medicare & Medicaid Services, Department of Health and Human
    Services.

[^194]: 42 U.S.C. § 1396 (1994).

[^195]: Feder, J., Komisar, H., & Niefeld, M. (2000). Long-Term Care in
    the United States: An Overview. *Health Affairs*, 19(3): 40--56.

[^196]: Wacker, R.R, Roberto, K.A., & Piper, L.E. (1998). Community
    Resources for Older Adults: Programs and Services in an Era of
    Change. Thousand Oaks, CA.

[^197]: Brief Summaries of Medicare & Medicaid: Title XVIII and Title
    XIX of the Social Security Act as of November 1, 2003. Prepared by
    Earl Dirk Hoffman, Jr., Barbara S. Klees, and Catherine A. Curtis.
    Office of the Actuary, Centers for Medicare & Medicaid Services,
    Department of Health and Human Services.

[^198]: Ibid.

[^199]: Ibid.

[^200]: Ibid.

[^201]: Ibid.

[^202]: Smith, G., Doty, P., and O'Keeffe, J. (2000). Consumer-Directed
    Home and Community Services. Understanding Medicaid Home and
    Community Services: A Primer. Washington, DC.

[^203]: CMS program data, May 2004. Available at:

    [www.cms.hhs.gov/researchers/walletcard/04cmsprogramdata.pdf](http://www.cms.hhs.gov/researchers/walletcard/04cmsprogramdata.pdf).

[^204]: 2004 Annual Report of the Board of Trustees of the Federal
    Hospital Insurance and Federal Supplementary Medical Insurance Trust
    Funds. Centers for Medicare & Medicaid Services. Accessed 2004.
    Available at: www.cms.hhs.gov/publications/trusteesreport/2004/.

[^205]: 42 U.S.C. § 1396n(c) (1994) (amended 1999).

[^206]: Tritz, K. (2004). Long-Term Care: Consumer-Directed Services
    Under Medicaid. Washington, DC: Congressional Research Service (CRS
    RL32219).

[^207]: Brief Summaries of Medicare & Medicaid: Title XVIII and Title
    XIX of the Social Security Act as of November 1, 2003. Prepared by
    Earl Dirk Hoffman, Jr., Barbara S. Klees, and Catherine A. Curtis.
    Office of the Actuary, Centers for Medicare & Medicaid Services,
    Department of Health and Human Services.

[^208]: Summer, L. (May 2003). Medicaid and Long-Term Care. Washington,
    DC: Georgetown University Long-Term Care Financing Project, fact
    sheet.

[^209]: Ibid.

[^210]: HCFA 64 data, Center for Medicaid and State Operations, Division
    of Financial Management, Available at:
    <http://aspe.hhs.gov/daltcp/reports/stateltc.htm>. (Last viewed
    January 27, 2005.)

[^211]: Brief Summaries of Medicare & Medicaid: Title XVIII and Title
    XIX of the Social Security Act as of November 1, 2003. Prepared by
    Earl Dirk Hoffman, Jr., Barbara S. Klees, and Catherine A. Curtis.
    Office of the Actuary, Centers for Medicare & Medicaid Services,
    Department of Health and Human Services.

[^212]: Ibid.

[^213]: Ibid.

[^214]: 2004 Annual Report of the Board of Trustees of the Federal
    Hospital Insurance and Federal Supplementary Medical Insurance Trust
    Funds. Centers for Medicare & Medicaid Services. Accessed 2004.
    Available at: www.cms.hhs.gov/publications/trusteesreport/2004/.

[^215]: Ibid.

[^216]: Ibid.

[^217]: CMS program data, May 2004. Available at:

    [www.cms.hhs.gov/researchers/walletcard/04cmsprogramdata.pdf](http://www.cms.hhs.gov/researchers/walletcard/04cmsprogramdata.pdf).

[^218]: 2004 Annual Report of the Board of Trustees of the Federal
    Hospital Insurance and Federal Supplementary Medical Insurance Trust
    Funds. Centers for Medicare & Medicaid Services. Accessed 2004.
    Available at: www.cms.hhs.gov/publications/trusteesreport/2004/.

[^219]: Brief Summaries of Medicare & Medicaid: Title XVIII and Title
    XIX of the Social Security Act as of November 1, 2003. Prepared by
    Earl Dirk Hoffman, Jr., Barbara S. Klees, and Catherine A. Curtis.
    Office of the Actuary, Centers for Medicare & Medicaid Services,
    Department of Health and Human Services.

[^220]: Ibid.

[^221]: 2004 Annual Report of the Board of Trustees of the Federal
    Hospital Insurance and Federal Supplementary Medical Insurance Trust
    Funds. Centers for Medicare & Medicaid Services. Accessed 2004.
    Available at: www.cms.hhs.gov/publications/trusteesreport/2004/.

[^222]: National Governors Association. (2005). Governors Urge Congress,
    President to Reform Medicaid Aging Population and Increased Number
    of Low Income Families are Driving up States' Medicaid Costs.
    Washington, DC: NGA. Available at:
    [www.nga.org/nga/legislativeUpdate/1,1169,C_ISSUE_BRIEF\^D_7813,00.html](http://www.nga.org/nga/legislativeUpdate/1,1169,C_ISSUE_BRIEF^D_7813,00.html).
    (Last viewed: January 26, 2005.)

[^223]: Disability advocates and housing professionals agree that this
    figure underestimates the number of people with disabilities with
    worst-case housing needs, because it is based solely on those people
    with disabilities receiving SSI and does not include other
    low-income people with disabilities.

[^224]: Office of Policy Development and Research. (December 2003).
    Trends in Worst Case Needs for Housing, 1978-1999: A Report to
    Congress on Worst Case Housing Needs. Plus Update on Worst Case
    Needs in 2001. Office of Policy Development and Research, U.S.
    Department of Housing and Urban Development.

[^225]: Burt, M., Aron, L.Y., & Lee, E. (2001). *Helping America's
    Homeless: Emergency Shelter or Affordable Housing*. Washington, DC:
    The Urban Institute.

[^226]: Priced Out in 2002. (2003). Technical Assistance Collaborative
    and Consortium for Citizens with Disabilities Housing Task Force.

[^227]: Government Accountability Office. (June 30, 2003).
    Transportation-Disadvantaged Populations: Some Coordination Efforts
    Among Programs Providing Transportation Services, But Obstacles
    Persist. Washington, DC: GAO (GAO-03-697).

[^228]: CTAA is a national professional membership association that
    conducts research and provides technical assistance for community
    transportation providers.

[^229]: Community Transportation Association of America. (March 2002).
    Building Mobility Partnerships: Opportunities for Federal
    Investment. Washington, DC: CTAA.

[^230]: Government Accountability Office. (February 24, 2004).
    Transportation-Disadvantaged Populations: Federal Agencies Are
    Taking Steps to Assist States and Local Agencies in Coordinating
    Transportation Services. Washington, DC: GAO (GAO-04-420R).

[^231]: Ibid.

[^232]: Ibid.

[^233]: United We Ride Program Home Page. Federal Transit Administration
    of the Department of Transportation. Accessed 2004. Available at:
    www.fta.dot.gov/CCAM/www/index.html.

[^234]: White House. (February 26, 2004). Executive Order 13330---Human
    Services Transportation Coordination. 69 FR 9185. Available at:
    www.whitehouse.gov/news/releases/2004/02/20040224-9.html.

[^235]: Ibid.

[^236]: Centers for Disease Control, www.cdc.gov/nchs.

[^237]: USDA Report to Congress. (December 1999). Promoting Healthy
    Eating: An Investment in the Future. Prepared by the Food and
    Nutrition Service, Alexandria, VA.

[^238]: Kerschner, H., & Pegues, J.M. (1998). Productive Aging: A
    Quality of Life Agenda. *Journal of the American Dietetic
    Association,* 98: 1445--448.

[^239]: The American Dietetic Association. (1998). Position of The
    American Dietetic Association: The Role of Nutrition in Health
    Promotion and Disease Prevention Programs. *Journal of the American
    Dietetic Association,* 98: 205--08.

[^240]: The American Dietetic Association. (2004). Position of the
    American Dietetic Association: Providing Nutrition Services for
    Infants, Children and Adults with Developmental Disabilities and
    Special Health Care Needs. *Journal of the American Dietetic
    Association*, 104(1): 97--107.

[^241]: Committee on Nutrition Services for Medicare Beneficiaries, Food
    and Nutrition Board. (1999). The Role of Nutrition in Maintaining
    Health in the Nation's Elderly: Evaluating Coverage of Nutrition
    Services for the Medicare Population. Washington, DC: Institute of
    Medicine.

[^242]: Jensen, G.L., Kita, K., Fish, J., Heydt, D., & Frey, C.. (1997).
    Nutrition Risk Screening Characteristics of Rural Older Persons:
    Relation to functional limitations and health care charges.
    *American Journal of Clinical Nutrition*, 66: 819--28.

[^243]: The American Dietetic Association. (1995). Position of The
    American Dietetic Association: Cost-effectiveness of Medical
    Nutrition Therapy. *Journal of the American Dietetic Association*,
    95: 88--91.

[^244]: Gallagher-Allred, C.R., Voss, A.C., Finn, S.C., & McCamish, M.A.
    (1996). Malnutrition and Clinical Outcomes: The Case for Medical
    Nutrition Therapy. *Journal of the American Dietetic Association*,
    96: 361--369.

[^245]: Chima, C.S., Barco, K., Dewitt, M.L., Maeda, M., Teran, J.C., &
    Mullen, K.D. (1997). Relationship of Nutritional Status to Length of
    Stay, Hospital Costs, and Discharge Status of Patients Hospitalized
    in the Medical Service. *Journal of the American Dietetic
    Association*, 97: 975--978.

[^246]: 29 U.S.C. Sec 2202(2).

[^247]: Assist Guide 1999-2003.

[^248]: Ibid.

[^249]: National Council on Disability. (2000). Federal Policy Barriers
    to Assistive Technology. Washington, DC: NCD. Available at:
    www.ncd.gov/newsroom/publications/2000/pdf/assisttechnology.pdf.
    (Retrieved: October 4, 2004.)

[^250]: U.S. Department of Health and Human Services. (August 27, 2003).
    Administration on Aging Fact Sheet: Assistive Technology.
    Washington, DC: HHS.

[^251]: The Federal Alternative Financing Program. (November 2002).
    First Year Analysis of the First Year of Operation of the Federal
    Alternative Financing Program for Individuals with Disabilities -
    Providing Low Cost Loans for the Purchase of Assistive Technology.
    Accessed 2004. Available at:
    www.resna.org/AFTAP/library/AFPreport.txt.

[^252]: Alternative Financing Programs At-A-Glance FY2003 Grantees.
    (Draft October 2003). Produced by RESNA/AFTAP, 1700 North Moore
    Street, Suite 1540, Arlington, VA 22209, 703-524-6686 (V),
    703-524-6639 (TDD), 703-524-6630 (Fax). Available at:
    www.resna.org/AFTAP.

[^253]: See the U.S. Department of Health and Human Services. (2002).
    Delivering on the Promise: Compilation of Individual Federal Agency
    Reports to Eliminate Barriers and Promote Community Integration.

[^254]: Smith, G., Doty, P., & O'Keefe, J. (2000). Supporting Informal
    Caregiving. In Understanding Medicaid Home and Community Services: A
    Primer. U.S. Department of Health and Human Services, Office of the
    Assistant Secretary for Planning and Evaluation, Washington, DC.

[^255]: Lutzky, S., Alexcih, L., Duffy, J., & Neill, C. (2000). Review
    of the Medicaid 1915(c) Home- and Community-Based Services Waiver
    Program literature and program data. Final report prepared for the
    Department of Health and Human Services, Health Care Financing
    Administration. Falls Church, VA: The Lewin Group.

[^256]: Ibid.

[^257]: Ibid.

[^258]: Milne, D., Change, D., & Mollica, R. (January 2004). *State
    Perspectives on Medicaid Long-Term Care: Report from a July 2003
    State Forum.* Portland, ME: National Academy for State Health
    Policy.

[^259]: Ibid.

[^260]: Ibid.

[^261]: Monks, J. (September 24, 2001). Testimony to the Commission on
    Affordable Housing and Health Facility Needs for Seniors in the
    21^st^ Century. Washington, DC: U.S. House of Representatives.
    Available at:
    [www.seniorscommission.gov/pages/hearings/010924/monks.html](http://www.seniorscommission.gov/pages/hearings/010924/monks.html).
    (Last viewed: January 25, 2005.)

[^262]: NCB Development Corporation. (2005). About Us. Washington, DC:
    NCBDC. Available at: [www.ncbdc.org](http://www.ncbdc.org/). (Last
    viewed: January 26, 2005.)

[^263]: Foster, L., Brown, R., Phillips, B., Schore, J., & Carlson, B.L.
    (March 2003). Does Consumer Direction Affect the Quality of Medicaid
    Personnel Assistance in Arkansas? Princeton, NJ: Mathematica Policy
    Research. Available at:
    [www.mathematica-mpr.com/publications/PDFs/condirect.pdf](http://www.mathematica-mpr.com/publications/PDFs/condirect.pdf).
    (Last viewed: January 21, 2005).

[^264]: For additional information, visit
    [www.cashandcounseling.org/index.html](http://www.cashandcounseling.org/index.html).
    (Last viewed: January 21, 2005).

[^265]: Williams, B. (2003). Consumer**-**Directed Services: Improving
    Medicaid Beneficiaries' Access to Quality Care: Testimony before the
    House Committee on Energy and Commerce, Subcommittee on Health.
    Washington, DC: U.S. House of Representatives.

[^266]: Wisconsin Department of Health and Family Services. (2005).
    Aging and Disability Resource Centers. Madison, WI: Wisconsin DHFS.
    Available at:
    [www.dhfs.wisconsin.gov/ltcare/generalinfo/rcs.htm](http://www.dhfs.wisconsin.gov/ltcare/generalinfo/rcs.htm).
    (Last viewed: January 21, 2005.)

[^267]: Centers for Medicare and Medicaid Services. (September 2004).
    Real Choice Systems Change Grant Program: Second Year Report.
    Baltimore, MD: CMS.

[^268]: Ibid.

[^269]: Ibid.

[^270]: National Council on Disability. (October 26, 2004).
    Consumer-Directed Health Care: How Well Does It Work? Washington,
    DC: NCD.

[^271]: Centers for Medicare and Medicaid Studies. (2004). Opening Doors
    to Independence: CMS Accomplishments in Support of the Presidential
    New Freedom Initiative. Baltimore, MD: CMS. Available at:
    [www.cms.hhs.gov/independenceplus/](http://www.cms.hhs.gov/independenceplus/).
    (Last viewed: January 21, 2005.)

[^272]: Centers for Medicare and Medicaid Studies. (2004). HHS Approves
    California Plan for Self-Directed Home Care. Baltimore, MD: CMS
    Press Releases. Available at:
    [www.hhs.gov/news](http://www.hhs.gov/news). (Last viewed: January
    21, 2005.)

[^273]: Ibid.

[^274]: Ibid.

[^275]: Congressional Research Service. (February 6, 2004). Long-term
    Care: Consumer-Directed Services Under Medicaid. Washington, DC:
    Congressional Research Service.

[^276]: Crisp, S., Eiken, S., Gerst, K., & Justice, D. (2004). *Money
    Follows the Person and Balancing Long-Term Care Systems: State
    Examples*. Washington, DC: Medstat, Research and Policy Division.

[^277]: President's Committee for People with Intellectual Disabilities.
    (2004). A Charge We Have to Keep: A Road Map to Personal and
    Economic Freedom for Persons with Intellectual Disabilities in the
    21^st^ Century.

[^278]: Americans with Disabilities Act, 42 U.S.C. §§ 12131-12165
    (2004).

[^279]: Rehabilitation Act of [1973]{.smallcaps}, 29 U.S.C. §§ 701-796l
    (2004).

[^280]: Taylor Burke, J.D., & Sara Rosenbaum, J.D. (July 2004). The
    Meaning of Community Integration: Exploring the ADA Legal Standard
    Within a Broader Social Context. Funded by the Center for Health
    Care Strategies, Inc. under The Robert Wood Johnson Foundation's
    Medicaid Managed Care Program.

[^281]: Rehabilitation Act of 1973, U.S. Department of Education.
    Available at: www.ed.gov/policy/speced/reg/narrative.html?exp=0.
    Accessed December 13, 2004.

[^282]: 42 U.S.C. § 12101(a)(8) (2004).

[^283]: 42 U.S.C. § 12132 (2004).

[^284]: 28 C.F.R. § 35.130 (b)(7), (d)-(e)-1 (2004).

[^285]: 28 C.F.R. pt 35, App. A. (2004).

[^286]: *Olmstead v. L.C.*, 119 S.Ct. 2176 (1999).

[^287]: National Low-Income Housing Coalition. (2002). The *Olmstead*
    Factor: Integrating Housing for People with Disabilities.
    Washington, DC: LIHIS.

[^288]: The *Olmstead* decision interpreted Title II of the ADA and its
    implementing regulations, which oblige states to administer their
    services, programs, and activities "in the most integrated setting
    appropriate to the needs of qualified individuals with
    disabilities." (28 C.F.R. 35.130(d) (2004)).

[^289]: 28 C.F.R. 35.130(b)(7) (2004).

[^290]: New Freedom Initiative. (2001). Retrieved on April 27, 2002.
    Available at:
    [www.hhs.gov/newfreedom](http://www.hhs.gov/newfreedom).

[^291]: White House. (2002). New Freedom Initiative.

[^292]: New Freedom Initiative. (2001)."Fulfilling America's Promise to
    Americans with Disabilities." Available at:
    [www.hhs.gov/newfreedom/](http://www.hhs.gov/newfreedom/).

[^293]: Executive Order No. 13217, §§1(a)-(c).

[^294]: See the U.S. Department of Health and Human Services. (2002).
    Delivering on the Promise: Compilation of Individual Federal Agency
    Reports to Eliminate Barriers and Promote Community Integration.

[^295]: New Freedom Initiative. (2001). The President's New Freedom
    Initiative for People with Disabilities: The 2004 Progress Report.
    Available at:
    [www.whitehouse.gov/infocus/newfreedom/toc-2004.html](http://www.whitehouse.gov/infocus/newfreedom/toc-2004.html).
    (Last viewed January 26, 2005.)

[^296]: See Letters to State Medicaid Directors. Available at:
    [www.cms.hhs.gov/states/letters/](http://www.cms.hhs.gov/states/letters/).
    See, for example, Promising State Practices, SMDL#-02-012. Available
    at:
    [www.cms.hhs.gov/states/letters/smd81302.pdf](http://www.cms.hhs.gov/states/letters/smd81302.pdf).
    (Last viewed January 18, 2005.); *Olmstead* Update Number 3 (HCFA
    Update). Available at:
    [www.cms.hhs.gov/states/letters/smd725a0.asp](http://www.cms.hhs.gov/states/letters/smd725a0.asp).
    (Last viewed January 18, 2005); *Olmstead* Update Number 2
    (Questions and Answers). Available at:
    [www.cms.hhs.gov/states/letters/smd72500.asp](http://www.cms.hhs.gov/states/letters/smd72500.asp).

[^297]: Smith, G. (December 2004). Status Report: Litigation Concerning
    Home and Community Services for People with Disabilities. Portland,
    OR: Human Services Research Institute.

[^298]: *Olmstead v. L.C.* by Zimring, 527 U.S.C. 581, 144 L. Ed. 2d
    540, 119 S. Ct. 2176 (1999).

[^299]: Merlis, M. (October 2004). Medicaid Reimbursement Policy: CRS
    Report to Congress. Washington, DC: Congressional Research Service.

[^300]: Ibid.

[^301]: O'Brien, E., & Elias, R. (May, 2004). Medicaid and Long-term
    Care. Washington, DC: Henry J. Kaiser Foundation.

[^302]: Ibid.

[^303]: Mollica, R. (December, 2004). Making Medicaid Work for the
    21^st^ Century. Issue Brief No. 5. Washington, DC: National Academy
    for State Health Policy. Available at:
    [www.hcbs.org/files/57/2816/IssueBrief5.pdf](http://www.hcbs.org/files/57/2816/IssueBrief5.pdf).
    (Last viewed: January 18, 2005.)

[^304]: Merlis, M. (October, 2004). Medicaid Reimbursement Policy: CRS
    Report to Congress. Washington, DC: Congressional Research Service.

[^305]: Ibid.

[^306]: Center for Health Policy and Research. (October 8, 2004).
    *Promising Practices: Managing the Care of People with
    Disabilities.* Shrewsbury, MA: University of Massachusetts Center
    for Health Policy and Research.

[^307]: Congressional Research Service. (October 25, 2004). CRS Report
    for Congress: Medicaid Reimbursement Policy. Washington, DC: CRS
    (Order Code RL32644).

[^308]: U.S. Department of Justice. (August 3, 2004). Justice Department
    Finds State of California Contributes to Unnecessary
    Institutionalization at Laguna Honda Nursing Home. Washington, DC:
    U.S. Department of Justice. Available at:
    [www.usdoj.gov/opa/pr/2004/August/04_crt_537.htm](http://www.usdoj.gov/opa/pr/2004/August/04_crt_537.htm).
    (Last viewed: January 18, 2005.)

[^309]: Ibid.

[^310]: U.S. Department of Justice. (August 3, 2004). Letter to the
    Governor of California re: Laguna Honda Hospital and Rehabilitation
    Center. Washington, DC: U.S. Department of Justice. Available at:
    http://www.usdoj.gov/crt/split/documents/laguna_honda_findlet_aug3.pdf.

[^311]: Ibid.

[^312]: Smith, G. (December 2004). Status Report: Litigation Concerning
    Home and Community Services for People with Disabilities.

[^313]: 197 F. 3d 611 (2d Cir. 1999), *cert denied*, 121 S. Ct. 156
    (2000), 23 MPDLR 878.

[^314]: Ibid., 613-14.

[^315]: Ibid., 619.

[^316]: 527 U.S. at 603, n.14.

[^317]: Rodriguez, 197 F. 3d at 619.

[^318]: 527 U.S. at 603-07.

[^319]: *Fisher v. Oklahoma Health Care Authority*, 335 F. 3d 1175
    (10^th^ Cir. 2003).

[^320]: Ibid., 1181.

[^321]: Ibid., 1182.

[^322]: Ibid.

[^323]: Ibid.,

[^324]: Ibid., 1181.

[^325]: Ibid., 1182.

[^326]: Ibid.

[^327]: Ibid.

[^328]: Ibid., 1183.

[^329]: United States District Court of Arizona, No. Civ.
    00-0067-TUC-EHC (August 12, 2004).

[^330]: Ibid.

[^331]: Ibid.

[^332]: Ibid., quoting, 42 C.F.R. § 447.204 (2004).

[^333]: Ibid.

[^334]: Smith, G. (December 2004). Status Report: Litigation Concerning
    Home and Community Services for People with Disabilities.

[^335]: Hoving, T. (1978). *The Untold Story.* New York: Simon and
    Schuster.

[^336]: Ibid., 369.

[^337]: Scanlon, W. (2003). *Long-Term Care and Medicare Policy: Can We
    Improve the Continuity of Care?* Eds. Blumental, Moon, Warshawsky, &
    Boccuti. Comment Paper.

[^338]: Schalock, R. (2004). The Emerging Disability Paradigm. *Journal
    of Disability Policy Studies* 14(4).

[^339]: National Council on Disability. (2004). Report on
    Consumer-Directed Health Care: How Well Does It Work? Washington,
    DC: NCD.

[^340]: Estes, C.L., & Linkins, K.W. (1999). Devolution and Aging
    Policy: Racing to the Bottom In Long-Term Care. In Eds. Minkler &
    Estes, *Critical Gerontology: Perspectives from Political and Oral
    Economy.* New York: Baywood.

[^341]: Niebuhr, R. (1956). *An Interpretation of Christian Ethics.* New
    York: Meridian Books.

[^342]: Please refer to Hartnett, J., & Morris, M. (2005). *State of
    21^st^ Century Long-Term Services and Supports Financing and Systems
    Reform for Americans with Disabilities*. See Chapter 1 for an
    explanation of the rich picture methodology. P. 4.

[^343]: Government Accountability Office. (February 2005). 21^st^
    Century Challenges: Reexamining the Base of the Federal Government.
    Washington, DC: GAO (GAO-05-325SP).

[^344]: Ibid., 15. Adaptation of Table 1. Government Accountability
    Office. (February 2005). 21^st^ Century Challenges: Reexamining the
    Base of the Federal Government. Washington, DC: GAO (Illustrative
    GAO-05-325SP). P. 35. Generic Reexamination Criteria.

[^345]: Government Accountability Office. (February 2005). 21^st^
    Century Challenges: Reexamining the Base of the Federal Government.
    Washington, DC: GAO (GAO-05-325SP).

[^346]: Blumenthal, D., Moon, M., Warshawsky, M., & Boccuti, C., Eds.
    (2003). *Long-Term Care and Medicare Policy. Can We Improve the
    Continuity of Care?* National Academy of Social Insurance. Brookings
    Institution Press.

[^347]: Kotlikkoff, L.J., & Burns, S. (2005). *The Coming Generational
    Storm: What You Need to Know About America's Economic Future.*
    Cambridge Massachusetts: MIT Press.

[^348]: Congressional Budget Office. (February 9, 2005). The Director of
    the Congressional Budget Office in Testimony on Social Security
    Reform before the Committee on the Budget, U.S. House of
    Representatives.

[^349]: Longman, P. (2004). *The Empty Cradle. How Falling Birthrates
    Threaten World Prosperity and What to Do About It.* New York: New
    America Book: Basics Publisher.

[^350]: Government Accountability Office. (2005). Long-Term Care
    Financing. Growing Demand and Cost of Services Are Straining Federal
    and State Budgets. Washington, DC: GAO (GAO-05-564T).

[^351]: Congressional Budget Office. (February 9, 2005). The Director of
    the Congressional Budget Office in Testimony on Social Security
    Reform before the Committee on the Budget, U.S. House of
    Representatives.

[^352]: Produced by the Consortium for Citizens with Disabilities, 1660
    L Street NW, Suite 701, Washington, DC 20036.
    [www.c-c-d.org](http://www.c-c-d.org/). CCD, a coalition of over 100
    national consumer, provider, and advocacy organizations, advocates
    for national public policy to ensure the self-determination,
    independence, empowerment, integration, and inclusion of the 54
    million children and adults with disabilities living in the United
    States.

[^353]: The National Center for Health Statistics defines a person as
    disabled if he or she has "specific physical, functional, or
    mental/emotional disability or limiting condition, has a lot of
    difficulty performing daily self-maintenance activities, uses
    special equipment or devices such as a wheelchair or breathing aid,
    and is limited in a major or other life activity due to physical,
    mental, or emotional problems." Kaiser Commission on Medicaid:
    Medicaid's Role for Persons with Disabilities. P. 10.

[^354]: Ibid. Defined as a disabling condition or impairment that has
    already lasted or is expected to last for at least one year.

[^355]: Kaiser Commission on Medicaid and the Uninsured. (August 2003).
    Medicaid's Role for Persons with Disabilities.

[^356]: O'Shaughnessy, C. (2003). Long-Term Care Chart Book: Persons
    Served, Payers and Spending. Congressional Research Service: The
    Library of Congress (RS21518).

[^357]: Kaiser Commission on Medicaid and the Uninsured: Medicaid's Role
    for Persons with Disabilities. August 2003. P. 10.

[^358]: Williams, B., Claypool, H., & Crowley, J.S. (2005). Navigating
    Medicare and Medicaid, 2005. A Resource Guide for People with
    Disabilities, Their Families, and Their Advocates. The Henry J.
    Kaiser Family Foundation.

[^359]: GAO-05-282SP. The Long-Term Fiscal Challenge. February 2005.
    Comptroller General's Forum. Government Accountability Office.

[^360]: Ibid., 5.

[^361]: Ibid., 6

[^362]: Ibid., 6

[^363]: Blumenthal, D., Moon, M., Warshawsky, M., & Boccuti, C., Eds.
    (2003). *Long-Term Care and Medicare Policy. Can We Improve the
    Continuity of Care?* National Academy of Social Insurance. Brookings
    Institution Press.

[^364]: Smith, V., & Moody, G. (2005). Medicaid in 2005: Principles &
    Proposals for Reform. Health Management Association. Prepared for
    the National Governors Association.

[^365]: O'Shaughnessy, C. (2003). Long--Term Care Chart Book: Persons
    Served, Payers and Spending. Congressional Research Service: The
    Library of Congress (RS21518).

[^366]: Smith, V., & Moody, G. (2005). Medicaid in 2005: Principles &
    Proposals for Reform. Health Management Association. Prepared for
    the National Governors Association. P. 13

[^367]: Ibid.

[^368]: Sachs, J.D. (2005). *The End of Poverty. Economic Possibilities
    for Our Time.* New York: Penguin Press.

[^369]: Hagen, S. (2004). Financing Long-Term Care for the Elderly.
    Washington, DC: Congressional Budget Office.

[^370]: The Henry J. Kaiser Family Foundation. (2003). Understanding the
    Health-Care Needs and Experiences of People with Disabilities.

[^371]: The risk of disability is as great as or greater than other
    risks that are routinely insured, but workers and employers are far
    more likely to consider health, life, and dental insurance before
    giving thought to disability income. The public overestimates the
    help that is available from public disability insurance programs,
    which do no pay enough to maintain the standard of living for those
    who do qualify. The Actuarial Foundation. (2004). Disability
    Insurance: A Missing Piece in the Financial Security Puzzle: Society
    of Actuaries Disability Chart Book Task Force: The Actuarial
    Foundation: America's Health Insurance Plans.

[^372]: The Actuarial Foundation. (2004). Disability Insurance: a
    Missing Piece in the Financial Security Puzzle: Society of Actuaries
    Disability Chart Book Task Force: The Actuarial Foundation:
    America's Health Insurance Plans.

[^373]: Purushotham, M. (2004). Individual Disability Income Insurance
    Lapse Experience. A Joint Study by LIMRA International and the
    Society of Actuaries.

[^374]: Dorn, S. (2004). Towards Incremental Progress: Key Facts About
    Groups of Uninsured. Economic and Social Research Institute.
    Washington, DC. Employers of Small Business.

[^375]: Davis, K. (2004). *Transformational Change: A Ten-Point Strategy
    to Achieve Better Health Care for All.* The Commonwealth Fund. New
    York.

[^376]: Paraprofessional Healthcare Institute. (2004). Results of the
    2003 National Survey of State Initiatives on the Long-Term Care
    Direct-Care Workforce. North Carolina Department of Health and Human
    Services, Office of Long-Term Care.

[^377]: Levine, L. (2003). Family Caregiving to the Elderly by Employed
    Persons: The Effects on Working Caregivers, Employers, and Federal
    Policy. Congressional Research Services: The Library of Congress
    (RL31755).

[^378]: Data Profile. (2005). A Decade of Informal Caregiving. Are
    today's informal caregivers different than informal caregivers a
    decade ago? Center on an Aging Society, Georgetown University.

[^379]: World Health Organization. (2002). Toward a Common Language for
    Functioning, Disability and Health.

[^380]: National Council on Disability. (2004). Request for Proposal:
    Long-Term Services and Supports Financing and Systems Reform for
    Americans with Disabilities.

[^381]: AARP. (2004). The Policy Book: AARP Public Policies: Long-Term;
    and O'Shaughnessy, C. (2003). Long-Term Care Chart Book: Persons
    Served, Payers and Spending. Congressional Research Service: The
    Library of Congress (RS21518). Services and Supports.

[^382]: Ibid., 3.

[^383]: Tritz, K. (2004). Long-Term Care: Consumer-Directed Services
    Under Medicaid. Congressional Research Service. The Library of
    Congress (RL32219). P. 10.

[^384]: Ibid.

[^385]: Honeycut, A.A., Grosse, S.D., Dunlap, L.J., Schendel, D.E.,
    Chen, H., Brann, E., & Homsi, G. (2002). Economic Costs of Mental
    Retardation, Cerebral Palsy, Hearing Loss, and Vision Impairment.
    National Center on Birth Defects and Developmental Disabilities,
    Centers for Disease Control and Prevention, Atlanta, GA.

[^386]: Hagen, S. (2004). Financing Long-Term Care for the Elderly.
    Congressional Budget Office. See p. 16, box 2-1, Long-Term Care
    Expenditures for None Elderly People.

[^387]: 2005 OASDI Trustee Report. Assumptions About the Future. Part
    II. Overview. Available at:
    www.ssas.gov/OACT/TR/TR05/II_assump.html.

[^388]: Spector, W.D., Fleishman, J.A., Pezzin, L.E., & Spillman, B.C.
    (2004). The Characteristics of Long-Term Care Users. Agency for
    Healthcare Research and Quality. U.S. Department of Health and Human
    Services.

[^389]: Ibid., 5.

[^390]: Ibid.

[^391]: Ibid.

[^392]: Spector, W.D., Fleishman, J.A., & Pezzin, L.E. (1994) The
    Characteristics of Long-term Care Users. AHRQ Report. Publication
    No. 00-0049.

[^393]: Spector, W.D., Fleishman, J.A., & Pezzin, L.E. (1994). The
    Characteristics of Long-term Care Users. AHRQ Report. Publication
    No. 00-0049; Disability Supplement to the National Health Interview
    Survey (NHIS-D) Phase 1 and the National Long-Term Care Survey
    (NLTCS).

[^394]: The Kaiser Commission on Medicaid and the Uninsured. (2004).
    Medicaid's Role for People with Disabilities. P. 17.

[^395]: Williams, B., Claypool, H., & Crowley J.S. (2005). Navigating
    Medicare and Medicaid, 2005. A Resource Guide for People with
    Disabilities, Their Families, and Their Advocates. The Henry J.
    Kaiser Family Foundation.

[^396]: Robert Wood Johnson Foundation. (January 2000). Health and
    Health Care 2010, The Forecast, the Challenge. The Institute for the
    Future. P. 17.

[^397]: The Kaiser Commission on Medicaid and the Uninsured. (2004).
    Medicaid's Role for People with Disabilities. P. 18.

[^398]: Disability: Federal Survey Definitions, Measurements, and
    Estimates. Data Digest. Public Policy Institute. AARP. DD Number 98.

[^399]: Rowe, J.W., & Kahn, R.L. (1998). *Successful Aging.* New York:
    Random House.

[^400]: Tilly, J., Goldenson, S., Kasten, J., O'Shaughnessy, C., Kelly,
    R., & Sidor, G. (2000). Long-Term Care Chart Book. Persons Served,
    Payers and Spenders. Congressional Research Service: The Library of
    Congress.

[^401]: U.S. Department of Health and Human Services. (February 2003).
    Changes in Elderly Disability Rates and the Implications for Health
    Care Utilization and Cost. Washington, DC: HHS Assistant Secretary
    for Planning and Evaluation Office of Disability, Aging and
    Long-Term Care Policy. P. ii.

[^402]: U.S. Department of Health and Human Services. (February 2003).
    Changes in Elderly Disability Rates and the Implications for Health
    Care Utilization and Cost. Washington, DC: HHS Assistant Secretary
    for Planning and Evaluation Office of Disability, Aging and
    Long-Term Care Policy.

[^403]: U.S. Department of Health and Human Services. (November 1996).
    Beyond the Water's Edge: Charting the Course of Managed Care for
    People with Disabilities---Conference Resource Book. Washington, DC:
    HHS.

[^404]: Ibid.

[^405]: Ibid.

[^406]: Ibid.

[^407]: LaPlante, M.P., Harrington, C., & Kang, T. (2004). Unmet Need
    for Personal Assistance Services. Estimating the shortfall in hours
    of help and adverse consequences. *Journal of Gerontology*, 59:
    98--108.

[^408]: Ibid.

[^409]: LaPlante, M.P., Harrington, C., & Kang, T. (2002). Estimating
    Paid and Unpaid Hours of Personal Assistance Services in Activities
    of Daily Living Provided to Adults Living at Home. *Health Services
    Research*, 37(2): 397--415.

[^410]: Burwell, B., Crown, T., & Drabek, J. (November 1997). Children
    with Severe Chronic Conditions on Medicaid. U.S. Department of
    Health and Human Services.

[^411]: Ibid.

[^412]: Adler, M. (January 1995). ASPE Research Notes.

[^413]: Ibid.

[^414]: Urban Institute. (2003). Long-Term Care. Consumers, Providers,
    and Financing. A Chart Book. Washington, DC: Urban Institute.

[^415]: Adler, M. (January 1995). ASPE Research Notes.

[^416]: Administration on Aging. (2000). A Profile of Older Americans:
    2000. Administration on Aging, U.S. Department of Health and Human
    Services.

[^417]: Ibid.

[^418]: Ibid.

[^419]: Weeks, J. (2004). The Second Longitudinal Study of Aging.
    Centers for Disease Control and Prevention National Center for
    Statistics.

[^420]: Administration on Aging. (2000). A Profile of Older Americans:
    2000. Administration on Aging, U.S. Department of Health and Human
    Services.

[^421]: Ibid.

[^422]: Ibid.

[^423]: Ibid.

[^424]: Ibid.

[^425]: Ibid.

[^426]: U.S. Census Bureau. (2004). Projections of the Total Resident
    Population by 5-year Age Groups. U.S. Census Bureau, Washington, DC.

[^427]: Spillman, B.C. (February 3, 2003). Changes in Elderly Disability
    Rates and Implications for Health Care Utilization and Cost. U.S.
    Department of Health and Human Services.

[^428]: Stone, R.I. (August 2000). Long-Term Care for the Elderly with
    Disabilities. Current Policy, Emerging Trends and Implications for
    the Twenty-First Century. New York: NY: Milbank Memorial Fund.

[^429]: Tu, H. (September 2004). Rising Health Costs, Medical Debt and
    Chronic Conditions. Center for Studying Health Care Change.

[^430]: Chronic Disease Overview. (2004). National Center for Chronic
    Disease Prevention and Health Prevention.

[^431]: U.S. Department of Health and Human Services. (January 2000).
    Healthy People 2010: Understanding and Improving Health. Washington,
    DC: HHS.

[^432]: Yach, D., et al. (June 2, 2004). The Global Burden of Chronic
    Diseases. Overcoming Impediments to Prevention and Control. *JAMA*,
    291(21).

[^433]: Chronic Disease Overview. (2004). National Center for Chronic
    Disease Prevention and Health Prevention.

[^434]: Wagner, E. (2004). Improving the Care of the Chronically Ill.
    MacColl Institute for Health Care Innovation. Group Health
    Cooperative.

[^435]: Berwick, D. (March 2004). Designing a 21^st^ Century Health Care
    System. Institute for Healthcare Improvement.

[^436]: McGlynn, T., et al. (June 26, 2003). The Quality of Health Care
    Delivered to Adults in the U.S. *NEJM*, 348: 2635--645.

[^437]: Tu, H. (September 2004). Rising Health Costs, Medical Debt and
    Chronic Conditions. Center for Studying Health Care Change.

[^438]: Ibid.

[^439]: Ibid.

[^440]: Ibid.

[^441]: Feinberg, L.F., Newman, S.L., & Van Steenberg, C. (November
    2002). Family Caregiver Support; Policies, Perceptions and Practices
    in 10 States Since Passage of the National Family Caregiver Support
    Program. Family Caregiver Alliance. P. 9.

[^442]: Ibid., 1.

[^443]: Spector, W.D., Shaffer, T.J., Hodlewsky, R.T., De La Mare, J.J.,
    & Rhoades, J.A. (June 2000). Future Directions for Community-Based
    Long Term Care Health Services Research. P. 6.

[^444]: U.S. Department of Health and Human Services. (January 2000).
    Healthy People 2010: Understanding and Improving Health. Washington,
    DC: HHS.

[^445]: The Henry J. Kaiser Family Foundation. (March 2005). Race,
    Ethnicity and Health Care. March 2005.

[^446]: Newacheck, P.W., Stein R.E.K., Bauman, L., & Hung, Y., (2003).
    Disparities in the Prevalence of Disability Between Black and White
    Children. *Pediatric Adolescent Medicine*, 157: 244--48.

[^447]: The Henry J. Kaiser Family Foundation. (March 2005). Race,
    Ethnicity and Health Care. Policy Challenges and Opportunities in
    Closing the Racial/Ethnic Divide in Health Care.

[^448]: Kijakazi, K. (2003). GAO Report Shows Social Security is
    Favorable to People of Color But Some Changes in It Could Harm
    Minority Communities. Reference made to GAO---03-387.

[^449]: Ibid.

[^450]: Tritz, K. (2004). Dual Eligibles: Medicaid Expenditures for
    Prescription Drugs and Other Services. CRS Report to Congress.
    Congressional Research Service: The Library of Congress (RL31987).

[^451]: Social Security Amendments of 1965 (P.L.89-97).

[^452]: Herz, E., Hearne, J., Stone-Axelrad, J. Tritz, K., Baumrucker,
    E., Scott, C., Peterson, C., Grady, A., & Rimkunas, R. (2005). How
    Medicaid Works: Program Basics. CRS Report for Congress.
    Congressional Research Service: The Library of Congress (RL32277).
    P. 2.

[^453]: Scott, C. (2004). Medicaid and the Current State Fiscal Crisis.
    CRS Report for Congress. Congressional Research Services : The
    Library of Congress (RL31773).

[^454]: Ibid., 1.

[^455]: Crowley, J. S., & Elias, R. (2003). Medicaid's Role for People
    with Disabilities. The Kaiser Commission on Medicaid and the
    Uninsured.

[^456]: Administration on Aging. (2000). A Profile of Older Americans:
    2000. Administration on Aging, U.S. Department of Health and Human
    Services. The 10 areas with the highest poverty rates for the
    elderly over the period of 1997 to 1999 were Mississippi 19.1
    percent; Louisiana 17.1 percent; the District of Columbia 16.5
    percent; Arkansas 15.8 percent; West Virginia 15.1 percent; New
    Mexico 14.8 percent; Texas 14.4 percent; Alabama 13.3 percent; New
    York 13.2 percent, and North Carolina 12.7 percent.

[^457]: Mandatory LTC benefits include nursing facility service for
    individuals 21 or over and home health care service for individuals
    entitled to nursing facility care through HCBS. Optional LTC
    benefits include ICF/MR services; inpatient facility services for
    mental diseases for people 65 and over; inpatient psychiatric
    hospital services for individuals under age 21; and home health care
    services.^?^ Under HCBS, Medicaid also provides optional services
    such as case management services, respiratory care services for
    ventilator-dependent individuals, personal care services, private
    duty nursing services, hospice services, services under a PACE
    program, and HCBS.

[^458]: The Kaiser Commission on Medicaid and the Uninsured. (2003).
    Medicaid's Role for People with Disabilities. P. 17.

[^459]: Williams, B., Claypool, H., & Crowley, J.S. (2005). Navigating
    Medicare and Medicaid, 2005. A Resource Guide for People with
    Disabilities, Their Families, and Their Advocates. The Henry J.
    Kaiser Family Foundation.

[^460]: Ibid., see P. 40 for detailed list of services under this
    category.

[^461]: Ibid., see P. 40 for detailed list of services under this
    category.

[^462]: Williams, B., Claypool, H., & Crowley, J.S. (2005). Navigating
    Medicare and Medicaid, 2005. A Resource Guide for People with
    Disabilities, Their Families, and Their Advocates. The Henry J.
    Kaiser Family Foundation.

[^463]: Herz, E., Hearne, J., Stone-Axelrad, J., Tritz, K., Baumrucker,
    E., Scott, C., Peterson, C., Grady, A., & Rimkunas, R. (2005). How
    Medicaid Works: Program Basics. CRS Report for Congress.
    Congressional Research Service: The Library of Congress (RL32277).
    P. 2.

[^464]: Ibid., 10.

[^465]: Ibid., 2.

[^466]: Ibid.,12

[^467]: Congressional Budget Office. (2004). Financing Long-Term Care.
    Washington, DC: CBO. P. 1.

[^468]: Smith, V.K., & Moody, G. (2005). Medicaid in 2005: Principles
    and Proposals for Reform. Prepared for the National Governors
    Association. P. 2

[^469]: Ibid.

[^470]: Holahan, J., & Ghosh, A. (2005). Understanding the Recent Growth
    in Medicaid Spending 2000--2003. Urban Institute Health Policy
    Center. Washington, DC.

[^471]: The Kaiser Commission on Medicaid and the Uninsured. (August
    2003). Medicaid's Role for People with Disabilities. P. 35.

[^472]: Ibid.

[^473]: Rizzolo, M.C., Hemp, R., Braddock, D., & Pomeranz-Essley, A.
    (2004). The State of the States in Developmental Disabilities.
    Department of Psychiatry and Coleman Institute for Cognitive
    Disabilities, The University of Colorado. P. 48.

[^474]: Grady, A., Hearne, J. Herz, E., Scott, C., Stone-Axelrad, J., &
    Tritz, K. (2005). Medicaid and SCHIP: The President's 2005 Budget
    Proposals.

[^475]: Ibid., 5--10.

[^476]: Herz, E., Hearne, J., Stone-Axelrad, J., Tritz, K., Baumrucker,
    E., Scott, C., Peterson, C., Grady, A., & Rimkunas, R. (2005). How
    Medicaid Works: Program Basics. CRS Report for Congress.
    Congressional Research Service: The Library of Congress (RL32277).

[^477]: Ibid.

[^478]: The Kaiser Commission on Medicaid and the Uninsured. (August
    2003). Medicaid's Role for People with Disabilities. P. 13.

[^479]: Ibid. When work income exceeds SSI eligibility rules and a
    person is no longer receiving SSI cash benefits but is still
    considered a "qualified severely impaired individual," the person
    may still receive Medicaid if he or she meets four criteria: (1)
    continues to be blind or have a disabling impairment; (2) meets all
    other SSI eligibility requirements except for earnings; (3) would be
    seriously inhibited from continuing to work by the termination of
    eligibility for Medicaid services; and (4) earnings are not
    sufficient to provide a reasonable equivalent to the benefits
    available if he or she did not have SSI, state supplementary
    payments (where applicable), medical care, and publicly funded
    personal care.

[^480]: Government Accountability Office. (June 2003). Medicaid and
    Ticket to Work. States' Early Efforts to Cover Working Individuals
    with Disabilities. Washington, DC: GAO (GAO-03-587).

[^481]: Rizzolo, M.C., Hemp, R., Braddock, D., & Pomeranz-Essley, A.
    (2004). The State of the States in Developmental Disabilities.
    Department of Psychiatry and Coleman Institute for Cognitive
    Disabilities, The University of Colorado. P. 30.

[^482]: Ibid., 10.

[^483]: Ibid., 15.

[^484]: Ibid., 16

[^485]: Eiken, S., & Burwell, B. (2004). Medicaid HCBS Waiver
    Expenditures, FY 1995 through FY 2001. Medstat Group, Inc.
    Cambridge, Massachusetts.

[^486]: Ibid.

[^487]: Ibid., 2.

[^488]: Ibid., 24.

[^489]: Ibid., 24.

[^490]: Ibid., 27. Refers to research from Mank, D., Rhodes, E., &
    Bellamy, T. (1986). Four Supported Employment Alternatives. In Eds.
    W.E. Kiernan & J.A. Stark, *Pathways to Employment for Adults with
    Developmental Disabilities.* Baltimore: Brookes.

[^491]: Ibid., 28, Table 9.

[^492]: Ibid., 31.

[^493]: Ibid., 31.

[^494]: Ibid., 31.

[^495]: Herz, E., Hearne, J., Stone-Axelrad, J., Tritz, K., Baumrucker,
    E., Scott, C., Peterson, C., Grady, A., & Rimkunas, R. (2005). How
    Medicaid Works: Program Basics. CRS Report for Congress.
    Congressional Research Service: The Library of Congress (RL32277).
    Table 8. Total State and Federal Medicaid Payments by Basis of
    Eligibility, Type of Service, and as a Percentage of Total Payments,
    FY2002. P. 26.

[^496]: Ibid. Payments by Basis of Eligibility, Type of Service, and as
    a Percentage of Total Payments, FY2002. P. 26.

[^497]: Tritz, K. (2004). Dual Eligibles: Medicaid Expenditures for
    Prescription Drugs and Other Services. CRS Report for Congress.
    Congressional Research Services: The Library of Congress (RL31987).

[^498]: McKinsey Global Institute. (2005). The Coming Demographic
    Deficit: How Aging Populations Will Reduce Global Savings. McKinsey
    Global Institute, McKinsey & Company. P. 4.

[^499]: Ibid.

[^500]: Peterson, P. (2004). *Running on Empty: How the Democratic and
    Republican Parties Are Bankrupting Our Future and What Americans Can
    Do About It.* New York: Farrar, Straus and Giroux. P. xi.

[^501]: Government Accountability Office. (February 2005). 21^st^
    Century Challenges: Reexamining the Base of the Federal Government.
    Washington, DC: GAO (GAO-05-325SP).

[^502]: 2005 Annual Report of the Board of Trustees of the Federal
    Old-Age and Survivors Insurance and Disability Insurance Trust
    Funds. Annual costs will exceed tax income starting in 2017, at
    which time the annual gap will be covered with cash from redeeming
    special obligations of the Department of Treasury, until these
    assets are exhausted in 2041. The open group unfunded obligation of
    Old-Age and Survivors Insurance and Disability Insurance over the
    75-year period is \$4 trillion in present value, \$0.3 trillion more
    than the unfunded obligation estimated a year ago. (P. 2).

[^503]: Peterson, P. (2004). *Running on Empty: How the Democratic and
    Republican Parties Are Bankrupting Our Future and What Americans Can
    Do About It.* New York: Farrar, Straus and Giroux

[^504]: The Kaiser Commission on Medicaid and he Uninsured. (2003).
    Medicaid's Role for People with Disabilities. P. 10.

[^505]: Kotlikoff, L.H., & Burns, S. (2005). *The Coming Generational
    Storm. What You Need to Know about America's Economic Future.*
    Cambridge, Massachusetts: MIT Press. P. 236.

[^506]: www.who.int/inf-pr-2000/en/pr2000-life.html.

[^507]: U.S. Department on Aging. (2000). A Profile of Older Americans:
    Administration on Aging. U.S. Department on Aging, U.S. Department
    of Health and Human Services.

[^508]: U.S. Department of Health and Human Services. (January 2000).
    Healthy People 2010: Understanding and Improving Health. Washington,
    DC: HHS.

[^509]: O'Shaughnessy, C. (2003). Long-Term Care Chart Book: Persons
    Served, Payers and Spending. Congressional Research Service: The
    Library of Congress (RS21518).

[^510]: Government Accountability Office. (April 27, 2005). Long-Term
    Care Financing: Growing Demand and Cost of Services Are Straining
    Federal and State Budgets. Washington, DC: GAO (GAO-05-564T).

[^511]: Ibid., 7.

[^512]: Ibid., 8.

[^513]: Ibid., 10.

[^514]: O'Shaughnessy, C. (2003). Long-Term Care Chart Book: Persons
    Served, Payers and Spending. Congressional Research Service: The
    Library of Congress (RS21518). P. 3.

[^515]: Herz, E., Hearne, J., Stone-Axelrad, J., Tritz, K., Baumrucker,
    E., Scott, C., Peterson, C., Grady, A., & Rimkunas, R. (2005). How
    Medicaid Works: Program Basics. CRS Report for Congress.
    Congressional Research Service: The Library of Congress (RL32277).

[^516]: NCB Development Corporation. (2004). Improving Long-term Care in
    America. Washington, DC: NCBDC.

[^517]: Allen, K.G. (2005). Long-Term Care Financing: Growing Demand and
    Cost of Services Are Straining Federal and State Budgets. Testimony
    before the Subcommittee on Health, Committee on Energy and Commerce,
    House of Representatives (GAO-05-564T). P. 6.

[^518]: Ibid., 6.

[^519]: Government Accountability Office. (February 2005). 21^st^
    Century Challenges: Reexamining the Base of the Federal Government.
    Washington, DC: GAO (GAO-05-325SP).

[^520]: Ibid.

[^521]: Holtz,-Eakin, D. (April 19, 2005). CBO Testimony. The Cost and
    Financing of Long-Term Care Services before the Subcommittee on
    Health Committee on Ways and Means U.S. House of Representatives,
    Congressional Budget Office. P. 4.

[^522]: Government Accountability Office. (February 2005). 21^st^
    Century Challenges: Reexamining the Base of the Federal Government.
    Washington, DC: GAO (GAO-05-325SP).

[^523]: O'Shaughnessy, C. (2003). Long-Term Care Chart Book: Persons
    Served, Payers and Spending. Congressional Research Service: The
    Library of Congress (RS21518). Pp. 3--5.

[^524]: Government Accountability Office. (February 2005). 21^st^
    Century Challenges: Reexamining the Base of the Federal Government.
    Washington, DC: GAO (GAO-05-325SP).

[^525]: Herz, E., Hearne, J., Stone-Axelrad, J., Tritz, K., Baumrucker,
    E., Scott, C., Peterson, C., Grady, A., & Rimkunas, R. (2005). How
    Medicaid Works: Program Basics. CRS Report for Congress. RL32277.
    Congressional Research Service: The Library of Congress. P. 24.

[^526]: Tritz, K., & Lindley, M.(2004). Dual Eligibles: Medicaid
    Expenditures for Prescription Drugs and Other Services. CRS Report
    to Congress. Congressional Research Services. RL31987.

[^527]: Peterson, C.L. (2004). Medicaid/SCHIP as Primary Source of
    Health Insurance During the Year. CRS Report for Congress.
    Congressional Research Service: The Library of Congress (RL32555).

[^528]: Ibid.

[^529]: Ibid., 7. The drop in wages was due to either having a wage
    reduction in their current job or taking a different job with a
    lower wage. Only 39 percent were linked to policyholders who worked
    for the entire year and did not experience a wage drop.

[^530]: Ibid. Estimates used in this report are based on monthly
    Medicaid/SCHIP enrollment reported in the 2001 Medicaid Expenditure
    Panel Survey (MEPS).

[^531]: Shaprio, T.M. (2004). *The Hidden Cost of Being African
    American. How Wealth Perpetuates Inequality.* New York: Oxford
    University Press.

[^532]: Employee Benefit News. (February 2, 2003). A Federal Case for
    Long Term Care.

[^533]: Testimony of Buck Stinson, President, Genworth Financial Inc.,
    Long-Term Care Division. (April, 19, 200**\[?\]**). U.S. House of
    Representatives Subcommittee on Health of the Committee on Ways and
    Means Long-Term Care Hearing.

[^534]: Peterson, C.L. (2004). Medicaid/SCHIP as Primary Source of
    Health Insurance During the Year. CRS Report for Congress.
    Congressional Research Service: The Library of Congress (RL32555).
    Quoted from Employer Health Benefits: 2003 Annual Survey. The Kaiser
    Family Foundation and Health Research and Educational Trust, 2003,
    P. 2.

[^535]: Dorn, S. (2004). Towards Incremental Progress: Key Facts About
    Groups of Uninsured. Economic and Social Research Institute.
    Washington, DC: Employers of Small Business.

[^536]: Ibid. Fact Sheet: 2004. \$15,670 a year for a family of
    three---over half are uninsured (51.3%).

[^537]: Stone, J.L. (2002). Long-Term Care: Nursing and Paraprofessional
    Workforce Issues. CRS Report to Congress. Congressional Research
    Service: The Library of Congress (RL31090).

[^538]: Stinson, B. (April 19, 2005). Testimony in the U.S. House of
    Representatives: Subcommittee on Health of the Ways and Means
    Long-Term Care Hearing. Genworth Financial, Inc., Long-Term Care
    Division.

[^539]: Long-Term Care Division. (2005). Genworth Long-Term Care and
    Alzheimer's Disease in America: A Retrospective: Long-Term Care
    Insurance Products are Underwritten by General Electric Capital
    Assurance Company and, in New York, by GE Capital Life Assurance
    Company of New York. Richmond, VA: Long-Term Care Division.

[^540]: Stinson, B. (April 19, 2005). Testimony in the U.S. House of
    Representatives: Subcommittee on Health of the Ways and Means
    Long-Term Care Hearing. Genworth Financial, Inc., Long-Term Care
    Division.

[^541]: Ibid., 6.

[^542]: Trautwein, J. (April 19, 2005). Testimony from the National
    Association of Health Underwriters to the United States House of
    Representatives. Ways and Means Committee. Arlington, VA.

[^543]: Meiners, M.R. (2005). Testimony before the Subcommittee on
    Health of the House Committee on Ways and Means. Hearing on Issues
    Relating to Long-Term Care. George Mason University. Center for
    Health Policy, Research and Ethics.

[^544]: Ibid., 3--10.

[^545]: Society of Actuaries Disability Chart Book Task Force. (2004).
    Disability Insurance: A Missing Piece in the Financial Security
    Puzzle. America's Health Insurance Plans. The Actuarial Foundation.

[^546]: Feder, J. (2005). Testimony before the Subcommittee on Health,
    Committee on Ways and Means, U.S. House of Representatives.
    Long-Term Care.

[^547]: Congressional Budget Office. (November 2004). Disability and
    Retirement: The Early Exit of Baby Boomers from the Labor Force.
    Washington, DC: CBO.

[^548]: Society of Actuaries Disability Chart Book Task Force. (2004).
    Disability Insurance: A Missing Piece in the Financial Security
    Puzzle. America's Health Insurance Plans. The Actuarial Foundation.

[^549]: Stone, J.L. (December 18, 2002). Long-Term Care: Nursing and
    Paraprofessional Work Force Issues. Congressional Research Service.
    P. 3.

[^550]: National Clearinghouse on Direct Care. (September 2004). Who are
    direct-care workers? National Clearinghouse on Direct Care Workforce
    Fact Sheet. P. 1.

[^551]: Turnham, H. (May 2004). Supporting the In-Home Workforce.
    National Governors Association's Aging with Health and Dignity
    Forum. P. 1.

[^552]: Holzer, H. (December 2002). Modeling the Future Supply and
    Demand for Long Term Care Workers. Institute for the Future of Aging
    Services. P. 3.

[^553]: Friedman, R.B. (July 2004). Caregivers and Long-Term Care Needs
    of the 21^st^ Century: Will public policy meet the challenge?
    Long**-**Term Care Project, Georgetown University. P. 1.

[^554]: Ibid., 6.

[^555]: Holzer, H. (December 2002). Modeling the Future Supply and
    Demand for Long Term Care Workers. Institute for the Future of Aging
    Services. P. 1.

[^556]: National Clearinghouse on Direct Care. (September 2004). Who are
    direct-care workers? National Clearinghouse on Direct Care Workforce
    Fact Sheet. P. 1.

[^557]: Holzer, H. (December 2002). Modeling the Future Supply and
    Demand for Long Term Care Workers. Institute for the Future of Aging
    Services. P. 2.

[^558]: Stone, J.L. (December 18, 2002). Long-Term Care: Nursing and
    Paraprofessional Work Force Issues. Congressional Research Service.
    P. 4.

[^559]: Ibid., 5.

[^560]: National Clearinghouse on Direct Care. (September 2004). Who are
    direct-care workers? National Clearinghouse on Direct Care Workforce
    Fact Sheet. P. 2.

[^561]: Holzer, H. (December 2002). Modeling the Future Supply and
    Demand for Long Term Care Workers. Institute for the Future of Aging
    Services. P. 2.

[^562]: National Clearinghouse on Direct Care. (September 2004).Who are
    direct-care workers? National Clearinghouse on Direct Care Workforce
    Fact Sheet. P. 2.

[^563]: Ibid.

[^564]: Holzer, H. (December 2002). Modeling the Future Supply and
    Demand for Long Term Care Workers. Institute for the Future of Aging
    Services. P. 8.

[^565]: Ibid., 8.

[^566]: Ibid.

[^567]: National Council on Disability. (2005). Consumer-Directed Health
    Care: How Well Does It Work? Washington, DC: NCD. P. 10.

[^568]: Lutzky, S., Alecxih, L.M., Duffy, J., and Neill, C. (June 15,
    2000). Review of the Medicaid 1915(c) Home- and Community- Based
    Services Waiver Program Literature and Program Data. The Lewin
    Group. P. 24.

[^569]: National Council on Disability. (2005). Consumer-Directed Health
    Care: How Well Does It Work? Washington, DC: NCD. P. 10.

[^570]: Tritz, K. (February 27, 2004). Long-Term Care: Consumer Directed
    Services under Medicaid. P. 10.

[^571]: Ibid., 7.

[^572]: National Council on Disability. (2005). Consumer-Directed Health
    Care: How Well Does It Work? Washington, DC: NCD. P. 74.

[^573]: Tritz, K. (February 27, 2004). Long-Term Care: Consumer Directed
    Services under Medicaid. P. 26.

[^574]: Ibid., 27.

[^575]: Ibid., 31.

[^576]: Lutzky, S., Alecxih, L.M., Duffy, J., and Neill, C. (June 15,
    2000). Review of the Medicaid 1915(c) Home and Community Based
    Services Waiver Program Literature and Program Data. The Lewin
    Group. P. 26.

[^577]: Spector, W.D., Shaffer, T.J., Hodlewsky, R.T., De La Mare, J.J.,
    & Rhoades, J.A. (June 2000). Future Directions for Community-Based
    Long Term Care Health Services Research. P. 2--3.

[^578]: United Cerebral Palsy Research and Educational Foundation. (May
    2004). Evaluation of the Child Suspected of Having Cerebral Palsy.

[^579]: United Cerebral Palsy Research and Educational Foundation.
    (October 2002). Cerebral Palsy -- Facts and Figures.

[^580]: United Cerebral Palsy Research and Educational Foundation. (May
    2004). Evaluation of the Child Suspected of Having Cerebral Palsy.

[^581]: Estimate by Supervisor in the Bennington, VT, Office of Economic
    Services based on two-person family with no income.

[^582]: Rizzolo, M.C., Hemp, R., Braddock, D., & Pomeranz-Essley, A.
    (2004). The State of the State in Developmental Disabilities.
    American Association on Mental Retardation. P. 25.

[^583]: Bascom, J.E. (January 2004). Annual Report 2004. Vermont
    Department of Developmental and Mental Health Services.

[^584]: Estimate by Supervisor in the Bennington, VT, Office of Economic
    Services based on two-person family with no income and no
    consideration of other expenses.

[^585]: Ireys, H., Anderson, G., Han C., and Neff, J. (May 22, 1996).
    Cost of Care for Medicaid Enrolled Children with Selected
    Disabilities. Johns Hopkins University, U.S. Department of Health
    and Human Services. P. 8.

[^586]: SSA estimated childhood benefit would be just for Crystal and
    would reduce her TANF benefits total, because it is a similar
    benefit to SSI.

[^587]: United Cerebral Palsy Research and Educational Foundation.
    (September 2004). Aging with Cerebral Palsy III.

[^588]: Honeycutt, A., et al. (January 2004). Economic Costs Associated
    with Mental Retardation, Cerebral Palsy, Hearing Loss and Vision
    Impairment -- United States, 2003. National Center on Birth Defects
    and Developmental Disabilities, CDC.

[^589]: National Institute of Mental Health (NIMH). (2002).
    Schizophrenia.

[^590]: Rizzolo, M.C., Hemp, R., Braddock, D., & Pomeranz-Essley, A.
    (2004). The State of the States in Developmental Disabilities.
    American Association on Mental Retardation.

[^591]: Ibid.

[^592]: Wisconsin Department of Health and Family Services. (2004).
    Wisconsin's Adult Mental Health Plan. P. 69.

[^593]: Rizzolo, M.C., Hemp, R., Braddock, D., & Pomeranz-Essley, A.
    (2004). The State of the States in Developmental Disabilities.
    American Association on Mental Retardation. P. 11.

[^594]: Crowley, J., & Elias, R. (August 2003). Medicaid's Role for
    People with Disabilities. The Kaiser Commission on Medicaid and the
    Uninsured. P. 13.

[^595]: National Center for Health Statistics. (2002). Health, United
    States, 2002. National Center for Health Statistics, CDC. P. 293.

[^596]: Department of Health and Family Services. (2004). Wisconsin's
    Adult Mental Health Plan. P. 69.

[^597]: Ibid., 69.

[^598]: Rizzolo, M.C., Hemp, R., Braddock, D., & Pomeranz-Essley, A.
    (2004). The State of the States in Developmental Disabilities.
    American Association on Mental Retardation. P. 11.

[^599]: Crowley, J., & Elias, R. (August 2003). Medicaid's Role for
    People with Disabilities. The Kaiser Commission on Medicaid and the
    Uninsured. P. 13.

[^600]: National Center for Health Statistics. (2002). Health, United
    States, 2002. National Center for Health Statistics, CDC. P. 293.

[^601]: American Association on Mental Retardation Web site,
    [www.aamr.org](http://www.aamr.org/).

[^602]: Rizzolo, M.C., Hemp, R., Braddock, D., & Pomeranz-Essley, A.
    (2004). The State of the States in Developmental Disabilities.
    American Association on Mental Retardation. P. 24.

[^603]: Massachusetts Department of Education. (August 27, 2004). School
    Finance: Statistical Comparison. Available at:
    [www.finance1.doe.mass.edu](http://www.finance1.doe.mass.edu/).

[^604]: Crowley, J., & Elias, R. (August 2003). Medicaid's Role for
    People with Disabilities. The Kaiser Commission on Medicaid and the
    Uninsured. P. 13.

[^605]: Rizzolo, M.C., Hemp, R., Braddock, D., & Pomeranz-Essley, A.
    (2004). The State of the States in Developmental Disabilities.
    American Association on Mental Retardation. P. 11.

[^606]: National Center for Health Statistics. (2002). Health, United
    States, 2002. National Center for Health Statistics, CDC. P. 11.

[^607]: Rizzolo, M.C., Hemp, R., Braddock, D., & Pomeranz-Essley, A.
    (2004). The State of the States in Developmental Disabilities.
    American Association on Mental Retardation. P. 26.

[^608]: Ibid.

[^609]: Karan, O., el al. (1992). Supported Living: Rethinking the rules
    of residential services. AAMR News and Notes. P. 5.

[^610]: Rizzolo, M.C., Hemp, R., Braddock, D., & Pomeranz-Essley, A.
    (2004). The State of the States in Developmental Disabilities.
    American Association on Mental Retardation. P. 32.

[^611]: Ibid., 28.

[^612]: Ibid., 11.

[^613]: Honeycutt, A., et al. (January 2004). Economic Costs Associated
    with Mental Retardation, Cerebral Palsy, Hearing Loss and Vision
    Impairment -- United States, 2003. National Center on Birth Defects
    and Developmental Disabilities, CDC.

[^614]: National Institute of Neurological Disorders and Stroke. (July
    2001). NINDS Spinal Cord Injury Information Page. Available at:
    [www.ninds.nih.gov](http://www.ninds.nih.gov/).

[^615]: Spinal Cord Injury Information Network. (August 2004). National
    Spinal Cord Injury Database. Available at:
    [www.spinalcord.uab.edu](http://www.spinalcord.uab.edu/).

[^616]: Colorado Department of Human Services. (November 2003).
    Department Strategic Plan FY 2004--05. 1-2-25.

[^617]: Ibid., 1-2-87.

[^618]: Social Security Administration Research and Statistics data.
    [www.ssa.gov](http://www.ssa.gov/)

[^619]: Ibid.

[^620]: Colorado Division of Vocational Rehabilitation. (July 2004).
    State Plan Updates 2005. Attachment 4.12(a). P. 3.

[^621]: Colorado Department of Human Services. (November 2003).
    Department Strategic Plan FY 2004--05. 1-2-86.

[^622]: Ibid., 1-2-87.

[^623]: National Center for Health Statistics. (2002). Health, United
    States, 2003. National Center for Health Statistics, CDC. P. 11.

[^624]: Spinal Cord Injury Information Network. (August 2004). National
    Spinal Cord Injury Database. Available at:
    [www.spinalcord.uab.edu](http://www.spinalcord.uab.edu/).

[^625]: Ibid.

[^626]: Social Security Online, Disability Planner, Estimated Benefits,
    Quick Calculator, www.socialsecurity.gov.

[^627]: Crowley, J., & Elias, R. (August 2003). Medicaid's Role for
    People with Disabilities. The Kaiser Commission on Medicaid and the
    Uninsured. P. 13.

[^628]: Miller, E.A. (January 22, 2001). Federal and State Initiatives
    to Integrate Acute and Long Term Care: Issues and Profiles. CRS
    Report to Congress. Washington, DC: Congressional Research Service
    (RL30813). P. 4.

[^629]: Lutzky, S., Alecxih, L.M., Duffy, J., and Neill, C. (June 15,
    2000). Review of the Medicaid 1915(c) Home and Community Based
    Services Waiver Program Literature and Program Data. The Lewin
    Group. P. 12.

[^630]: Social Security Administration, Research and Statistics.
    [www.ssa.gov](http://www.ssa.gov/).

[^631]: State Health Facts.
    [www.statehealthfacts.org](http://www.statehealthfacts.org/).

[^632]: Congressional Budget Office (April 2004). Financing Long Term
    Care for the Elderly. Congressional Budget Office Paper. P. iii.

[^633]: Ibid., 34.

[^634]: Alzheimer's Disease.com. (2004). Stages of Alzheimer's Disease.

[^635]: Ibid.

[^636]: Long-Term Care Report. (June 2004). Report to the U.S. Senate
    Special Committee on Aging. 81-752.

[^637]: Ibid.

[^638]: Boyle, R., Pande, N., & Lynch, L. (2004). *The Guide to Medi-Cal
    Programs*. Second Edition. Oakland, CA: California HealthCare
    Foundation.

[^639]: Alzheimer's Disease.com. (2004). Stages of Alzheimer's Disease.

[^640]: MS State Department of Health. (2002).

[^641]: Ibid.

[^642]: Economic Costs of Diabetes in the U.S. in 2002. Diabetes Care.
    26: 917-932. 2003.

[^643]: Ibid.

[^644]: Mississippi Division of Medicaid. (September 2004).

[^645]: U.S. Department of Health and Human Services. (2000). Health
    Care Financing Review. Medicare and Medicaid Statistical Supplement.
    Washington, DC: HHS. P. 332.

[^646]: Ibid., 332.

[^647]: Congressional Budget Office. (October 13, 2004). An Analysis of
    the Literature on Disease Management Programs. Washington, DC: CBO.

[^648]: National Cooperative Bank--Development Corporation. (August 12,
    2004). Federal Health Programs Grid.

[^649]: Government Accountability Office. (June 2003). Long-Term Care:
    Federal Oversight of the Growing Medicaid Home- and Community-Based
    Waivers Should Be Strengthened. Washington, DC: GAO. P. 5.

[^650]: Ibid., 6.

[^651]: Tritz, K. (February 27, 2004). Long-Term Care: Consumer Directed
    Services under Medicaid. P. 14.

[^652]: National Council on Disability. (2005). Consumer-Directed Health
    Care: How Well Does It Work? Washington, DC: NCD. P. 69.

[^653]: Roig-Franzia, M. (April 1, 2005). Long Legal Battle Over as
    Schiavo Dies. *Washington Post*, A1, A13.

[^654]: Smith, V., Kaye, N., Chang, D., Bonney, J., Milligan, C., Milne,
    D., Mollica, R., & Shirk, C. (2005). *Making Medicaid Work for the
    21^st^ Century*. Portland, ME: National Academy of State Health
    Policy.

[^655]: Ibid., 13.

[^656]: Ibid., 13.

[^657]: Ibid., 15.

[^658]: Ibid., 20.

[^659]: Ibid., 30.

[^660]: Ibid., 34.

[^661]: Ibid., 35.

[^662]: Ibid., 35.

[^663]: Ibid., 55.

[^664]: Ibid., 56.

[^665]: Ibid., 77.

[^666]: National Governors Association. (Adopted 2003). Chairman's
    Message. Retrieved August 13, 2004. Available at:
    [www.subnet.nga.org/ci/message.html](http://www.subnet.nga.org/ci/message.html).

[^667]: Ibid.

[^668]: Ibid.

[^669]: National Governors Association. (Adopted Winter Meeting 2003;
    Revised Winter Meeting 2005 (formerly Policy HR-43)). Policy
    Position Detail; HHS-27. Medicaid Reform Principles Policy.
    Retrieved August 13, 2004. Available at:
    [www.nga.org/nga/legislativeUpdate/1,1169,C_POLICY_POSITION\^D_5113,00.html](http://www.nga.org/nga/legislativeUpdate/1,1169,C_POLICY_POSITION^D_5113,00.html).

[^670]: Ibid.

[^671]: Ibid.

[^672]: Executive Office of the United States. (2004-6). President's
    Budget Proposals FY 04, 05, 06. Retrieved April 1, 2005. Available
    at:
    [www.gpoaccess.gov/usbudget/browse.html](http://www.gpoaccess.gov/usbudget/browse.html).

[^673]: Smith, V.K., & Moody, G. (February 2005). *Medicaid in 2005:
    Principles & Proposals for Reform.* Prepared for the National
    Governor's Association. Retrieved April 11, 2005. Available at:
    [www.nga.org/cda/files/0502MEDICAID.pdf](http://www.nga.org/cda/files/0502MEDICAID.pdf).

[^674]: Ibid., 9.

[^675]: Ibid., 9.

[^676]: Ibid., 10.

[^677]: National Governor's Association. (2004). *A Lifetime of Health
    and Dignity: 20 Actions Governors Can Take*. Retrieved August 13,
    2004. Available at:
    [www.subnet.nga.org/ci/5-top20.html](http://www.subnet.nga.org/ci/5-top20.html).

[^678]: Ibid.

[^679]: National Council on Disability. (2004). Livable Communities
    Report.

[^680]: IRS.gov and Mastermymoney.org.

[^681]: www.careeronestop.org.

[^682]: Eichner, J., & Blumenthal, D., Eds. (2003). *Medicare and
    Chronic Care in the 21^st^ Century: Building a Better Care System*.
    Washington, DC: National Academy of Social Insurance. P. 1.

[^683]: Ibid., 2.

[^684]: Ibid., 2.

[^685]: Ibid., 9.

[^686]: Ibid., 8.

[^687]: Ibid., 12.

[^688]: Ibid., 49.

[^689]: Ibid., 50.

[^690]: Ibid., 50.

[^691]: CMS Medicare Modernization Update Web site. Available at:
    www.cms.hhs.gov/mmu/default.asp.

[^692]: Ibid., 51.

[^693]: Ibid., 53.

[^694]: Ibid., 54.

[^695]: Ibid., 55.

[^696]: Ibid., 56.

[^697]: Ibid., 56.

[^698]: Congressional Budget Office. (2004). *Financing Long-Term Care
    for the Elderly*. Washington, DC: Government Printing Office. P. 1.

[^699]: Ibid., 2.

[^700]: Ibid., 2.

[^701]: Ibid., 16.

[^702]: Ibid., 16.

[^703]: Ibid., 23.

[^704]: Ibid., 27.

[^705]: Ibid., 27.

[^706]: Stone-Axelrad, J. (2004). Long-Term Care Insurance Partnership
    Program. CRS Report to Congress. Congressional Research Service: The
    Library of Congress (RL32610).

[^707]: Ibid., 30.

[^708]: Ibid. 29.

[^709]: Ibid., 31.

[^710]: Ibid., 31.

[^711]: Ibid., 24.

[^712]: Ibid., 24.

[^713]: Ibid., 25.

[^714]: ADAPT. Why direct action? Retrieved April 8, 2005. Available at:
    [www.adapt.org/back.htm](http://www.adapt.org/back.htm).

[^715]: 40 B.C.L.Rev. 1221, *Boston College Law Review*, September,
    1999, Note, \*1221 "Don't Tread on the ADA": *Olmstead v. L.C.* Ex
    Rel. Zimring and the Future of Community Integration for Individuals
    with Mental Disabilities, Joanne Karger.

[^716]: S.971, introduced May 1, 2003.

[^717]: Ibid.

[^718]: Section 1935.

[^719]: Ibid.

[^720]: Ibid*.*

[^721]: Ibid*.*

[^722]: Section 101.

[^723]: Ibid.

[^724]: American Association of Retired Persons (2005). *The Policy
    Book*. Washington, DC. P. 7-1.

[^725]: Ibid., 7-1.

[^726]: Ibid., 7-2.

[^727]: Ibid., 7-3.

[^728]: Ibid., 7-4.

[^729]: Ibid., 7-15.

[^730]: Ibid., 7-16.

[^731]: Ibid., 7-16.

[^732]: Ibid., 7-19.

[^733]: Ibid., 7-27.

[^734]: Ibid., 7-27.

[^735]: Ibid., 7-28.

[^736]: Ibid., 7-28.

[^737]: Ibid., 7-31.

[^738]: Ibid., 7-33.

[^739]: Ibid., 7-37.

[^740]: Ibid., 7-74.

[^741]: Ibid., 7-75.

[^742]: Ibid., 7-76.

[^743]: Ibid., 7-87.

[^744]: Ibid., 7-88.

[^745]: Ibid., 9-1.

[^746]: Ibid., 9-9.

[^747]: Ibid., 9-9.

[^748]: Government Accountability Office. (February 2005). *21^st^
    Century Challenges: reexamining the base of the federal government.*
    Washington, DC: U.S. Government Printing Office. P. 10.

[^749]: Ibid., 5.

[^750]: Ibid., 12.

[^751]: Ibid., 11.

[^752]: Ibid., 11.

[^753]: Ibid., 12.

[^754]: Ibid., 12.

[^755]: Ibid., 11.

[^756]: These programs allow states to waive usual Medicaid rules about
    eligibility "entitlement" for Medicaid services. Rather than having
    to provide HCBS services to any person who meets Medicaid
    eligibility requirements, a state may create a program for specific
    populations, such as aged people, traumatic brain injury
    individuals, or people with MR/DD who meet the income eligibility.

[^757]: Information was collected from state agency Web sites, planning
    documents, *Olmstead* and task force reports, and legislative budget
    and research documents. Additional information was obtained from
    state agency officials through telephone and e-mail communications.
    Many states have created task forces to consider strategies for
    addressing concerns raised by the 1999 Supreme Court *Olmstead*
    decision that inappropriate institutionalization of people with
    disabilities constitutes discrimination as defined by ADA. Telephone
    interviews were conducted with several key stakeholders in each
    state. (Names and titles of these stakeholders are provided in
    Appendix 4**.**A). Selected comments from these interviews appear in
    the state case studies. The views and recommendations of these
    stakeholders on needed federal reforms are also summarized in the
    conclusion to this chapter.

[^758]: Mollica, R. (November 2003). "Building Nursing Home Transition
    into a Balanced Long Term Care System: The Washington Model."
    National Academy for State Health Policy for the Community Living
    Exchange Collaborative.

[^759]: Department of Social and Health Services. (September 2002).
    Facing the Future: The State of Human Services in Washington: Part
    2.

[^760]: U.S. Census Bureau. Census 2000 Summary File 1; 1990 Census of
    Population. *General Population Characteristics, United States.*
    Also, Census Bureau. 2004 State and County Quick Facts. *Washington
    Quick Facts.*

[^761]: *Washington Quick Facts.*

[^762]: Personal communication with staff, Aging and Disability Services
    Administration, June 2004.

[^763]: RDA Client Services Database, Research and Data Analysis.
    Department of Social and Health Services, January 2004. Personal
    communications with department staff, June 2004.

[^764]: U. S. Centers for Medicare and Medicaid Services. (January
    2003). Promising Practices in Home- and Community-Based Services.
    "Washington: Facilitating Nursing Facility to Community
    Transitions." Washington, DC: CMS.

[^765]: Mollica, R. (November 2003). "Building Nursing Home Transition
    into a Balanced Long Term Care System: The Washington Model."
    National Academy for State Health Policy for the Community Living
    Exchange Collaborative.

[^766]: Personal communication with staff, Aging and Disability Services
    Administration, June 2004.

[^767]: Human Services Research Institute. (2004). "Home and Community
    Services Litigation Status Report: October 2004."

[^768]: Ibid.

[^769]: Developmental Disabilities Strategies for the Future Stakeholder
    Workgroup. (December 2002). "Developmental Disabilities Strategies
    for the Future: Long Range Plan. Phase 3, Final Report."

[^770]: Joint Legislative Audit and Review Committee. (April 21, 2004).
    "DSHS Responses to JLARC Studies of the Division of Developmental
    Disabilities." Status Report 04-07.

[^771]: Department of Social and Health Services Report to the
    Legislature. (December 2003). "The Impact of the Creation of the
    Aging and Disability Services Administration."

[^772]: "Facing the Future: Part 3."

[^773]: National Conference of State Legislatures. (2003). "The States'
    Response to the *Olmstead* Decision: Washington."

[^774]: Joint Legislative Audit and Review Committee. (January 29,
    2004). "DSHS Mental Illness Prevalence Study: Follow-Up to JLARC
    2000 Mental Health System Performance Audit." Report 04-1.

[^775]: Adair, T., & Toulon, A. (March 2003) "Assessing System of Care
    for Older Adults and Adults with Co-Occurring Medical and Behavioral
    Disorders Currently in Washington State Psychiatric Hospitals or at
    Risk of Hospitalization." Systems Change Grant Report.

[^776]: Ibid.

[^777]: Mollica, R. (2002). "State Assisted Living Policy: 2002."
    National Academy for State Health Policy.

[^778]: Government Accountability Office. (April 30, 2004). "Assisted
    Living: Examples of State Efforts to Improve Protections."
    Washington, DC: GAO (GAO-04-684).

[^779]: Ibid.

[^780]: National Conference of State Legislatures. (2003). "The States'
    Response to the *Olmstead* Decision: Washington."

[^781]: Joint Legislative Audit and Review Committee. (April 21, 2004).
    "Home Care Quality Authority Performance Measures and Data
    Collection Plan."

[^782]: Thomas, R. (March 22, 2004). "Home-Care Union Blended Force,
    Finesse to Win Gains." *The Seattle Times.*

[^783]: Aging and Adult Services Administration. (January 2004). "Fact
    Sheet: Informal/Family Caregivers." Department of Social and Health
    Services.

[^784]: Feinberg, L.F., et al. (November 2002). "Family Caregiver
    Support: Policies, Perceptions and Practices in 10 States Since
    Passage of the National Family Caregiver Support Program."

[^785]: Joint Legislative Audit and Review Committee. (January 7, 2004).
    "Washington Medicaid Study." Washington Legislature.

[^786]: Ibid. Department of Social and Health Services*.* (Spring 2003).
    "The Medicaid Integration Partnership: An Update."

[^787]: [www1.dshs.wa.gov/olmstead/index.htm](http://www1.dshs.wa.gov/olmstead/index.htm)

[^788]: Profile of General Demographic Characteristics for the United
    States: 1999-2001; poverty data is from the Current Population
    Survey, U.S. Bureau of the Census.

[^789]: Wasserman, J. (January 2004). "Shaping the Future of Long Term
    Care and Independent Living, 2003-2013." Department of Aging and
    Disabilities.

[^790]: This history is described in "Vermont's Home- and
    Community-Based Services System." Medstat. 2003.

[^791]: Vermont Agency of Human Services. (February 20, 2004). February
    Reorganization Report.

[^792]: Vermont Agency of Human Services. (January 2004). Reorganization
    Report.

[^793]: Vermont Agency of Human Services. (May 24, 2004). Request for
    No-Cost Extension. Real Choice System Change Grant.

[^794]: Medstat.

[^795]: Ibid.

[^796]: Wasserman, J. (January 2004). "Shaping the Future of Long Term
    Care."

[^797]: Ibid.

[^798]: The University of Minnesota Research and Training Center on
    Community Living and The Lewin Group. (August 21--25, 2000).
    "Medicaid Home and Community-Based Services in Vermont." Site visit.

[^799]: Bascom, J.E. (January 2004). Annual Report 2004. Vermont
    Department of Developmental and Mental Health Services.

[^800]: Department of Developmental and Mental Health Services. (July
    2003).The Statewide System of Care Plan for Adult Mental Health in
    Vermont, Update: Fiscal Years 2003--04.

[^801]: Ibid.

[^802]: The material on housing options is from J. Wasserman (2004),
    "Shaping the Future of Long Term Care."

[^803]: National Conference of State Legislatures. (April 19, 2004).
    "Better Jobs, Better Care: Retaining Long-Term Care Workers." State
    Health Notes.

[^804]: "Wage pass-through" refers to a legislative action that provides
    increased reimbursement for nursing homes but mandates that part or
    all of the increase be spent on increased wages or benefits for
    workers.

[^805]: A four-year, \$15.5 million research and demonstration program
    funded by the Robert Wood Johnson Foundation and the Atlantic
    Philanthropies

[^806]: "Results of the 2003 National Survey of State Initiatives."

[^807]: "Vermont Consumer Advocates Align the Stars for Direct Care
    Worker Advances." *Insights*. Better Jobs/Better Care newsletter,
    4(Summer 2004).

[^808]: Bascom, J.E. (January 2004). Annual Report 2004. Vermont
    Department of Developmental and Mental Health Services.

[^809]: Medstat. (2003). "Vermont's Home and Community Based Service
    System."

[^810]: Medicaid rules prohibit paying spouses and parents of minor
    children in consumer-directed programs.

[^811]: Department of Aging and Disabilities. (October 1, 2003).
    "Vermont Long-Term Care Plan."

[^812]: The one exception is that participants who choose home care may
    retain up to \$10,000 in assets.

[^813]: Bascom, J.E. (January 2004). Annual Report 2004. Division of
    Developmental Services, Department of Developmental and Mental
    Health Services.

[^814]: U.S. Centers for Medicare and Medicaid. (March 24--28, 2003).
    "Home- and Community-Based Waiver Review: Vermont. Target Group:
    Individuals with Mental Retardation and Developmental Disabilities."
    Onsite Review. (#0047.90.R3).

[^815]: Intermediate Care Facility for Persons with Mental
    Retardation/Developmental Disabilities.

[^816]: Wasserman, J. (January 2004). "Shaping the Future of Long Term
    Care."

[^817]: The U.S. Supreme Court ruled in 1999 that states would be
    violating ADA if they provide care to people with disabilities in
    institutional settings when they could be more appropriately served
    in home- or community-based settings. Most states have responded, at
    least initially, by preparing plans that lay out goals and actions
    for expanding HCBS for people with disabilities

[^818]: "Vermont's Response to Questions from 1115 Federal Review Team:
    Responses to December 2003 Questions from CMS." Available at:
    www.dad.state.vt.us/1115waiver/11204Responsespdf.

[^819]: Instrumental activities of daily living, such as shopping or
    telephoning.

[^820]: Minnesota Department of Human Services. (2004). "Status of
    Long-Term Care in Minnesota, 2003." 2004 Legislative Reports.

[^821]: Minnesota Department of Administration. Minnesota State
    Demographic Center. (February 2004). "Elderly Minnesotans: A 2000
    Census Portrait." Population Notes.

[^822]: U.S. Census Bureau 2000 population.

[^823]: [www.budget.state.mnus/budget/profiles/230482.pdf](http://www.budget.state.mnus/budget/profiles/230482.pdf).

[^824]: Minnesota Department of Human Services. (July 2003). "DSH
    Priorities."

[^825]: Minnesota Department of Human Services. (2004). "Status of
    Long-Term Care in Minnesota, 2003." 2004 Legislative Reports.

[^826]: Ibid.

[^827]: Personal communication with Department of Human Services staff,
    June 2004.

[^828]: State of Minnesota Long-Term Care Task Force. (January 2001).
    "Reshaping Long-Term Care in Minnesota." Final Report.

[^829]: Ibid.

[^830]: It should be noted that the task force's work and its subsequent
    recommendations were directed at issues affecting the elderly, not
    all people with disabilities

[^831]: Fox-Grage, W., et al. (2003). "States' Response to the
    O*lmstead* Decision: How Are States Complying?" National Conference
    of State Legislatures.

[^832]: State of Minnesota Long-Term Care Task Force. (February 2002).
    "Keeping the Vision." Report to the Minnesota Legislature: Progress
    on Reshaping Long-Term Care in Minnesota.

[^833]: Services that are beyond the scope or variety of those available
    under the state's traditional Medicaid State Plan.

[^834]: Punelli, D. (February 2004). "Medicaid Home and Community-Based
    Waiver Programs." Information Brief. Minnesota House of
    Representatives Research Department.

[^835]: Ibid.

[^836]: Minnesota Department of Human Services. (2004). "Status of
    Long-Term Care in Minnesota, 2003." 2004 Legislative Reports.

[^837]: Punelli, D. (February 2004). "Medicaid Home and Community-Based
    Waiver Programs." Information Brief. Minnesota House of
    Representatives Research Department.

[^838]: Medicaid Home Program Evaluation Division. Minnesota Office of
    the Legislative Auditor. (February 18, 2004). "Medicaid Home and
    Community-Based Waiver Services for Persons with Mental Retardation
    and or Related Conditions.

[^839]: Ibid.

[^840]: Punelli, D. (February 2004). "Medicaid Home and Community-Based
    Waiver Programs." Information Brief. Minnesota House of
    Representatives Research Department.

[^841]: Ibid.

[^842]: Personal communication with Mental Health Division officials.

[^843]: Department of Human Services Web site. "Adult Mental Health
    Initiatives: Focusing on the Community." Available at:
    www.dhs.state.mn.us/main/groups/disabilities/documents/pub/dhs_id_000085.hcsp.

[^844]: Ibid.

[^845]: Minnesota Department of Human Services. (2004). "Status of
    Long-Term Care in Minnesota, 2003." 2004 Legislative Reports.
    Personal communication with Department of Human Services staff, June
    2004.

[^846]: Ibid.

[^847]: www.dhs.state.mn.us/main/groups/economic_support/documents/pub/DHS_id_026695.pdf.

[^848]: State of Minnesota Long-Term Care Task Force. (January 2001).
    "Reshaping Long-Term Care in Minnesota." Final Report.

[^849]: Minnesota Department of Human Services. (2004). "Status of
    Long-Term Care in Minnesota, 2003." 2004 Legislative Reports.
    Personal communication with Department of Human Services staff, June
    2004.

[^850]: Centers for Medicare and Medicaid Services. U.S. Department of
    Health and Human Services. (October 2003). Real Choice Systems
    Change Grant Program: First Year Report. (October 1, 2001--September
    30, 2002).

[^851]: Minnesota Department of Human Services. (September 7, 2004).
    "Implementation of Consumer-Directed Supports Across All Waivers,
    MSHO and MnDHO." Bulletin #04-56-07.

[^852]: Ibid.

[^853]: Compendium of the Systems Change Grants for Community Living.
    Community-Integrated Personal Assistance Services and Supports
    Grants: Minnesota. Home and Community Based Services Resources
    Network.
    [www.hcbs.org/systems_change/minnesota.htm](http://www.hcbs.org/systems_change/minnesota.htm)[.]{.underline}

[^854]: Anderson, W., Wiener, J., Greene, A., and O'Keeffe, J. (April
    2004). "Direct Service Workforce Activities of the Systems Change
    Grantees: Final Report." U.S. Centers for Medicare and Medicaid.

[^855]: Minnesota Department of Human Services. (2004). "Status of
    Long-Term Care in Minnesota, 2003." 2004 Legislative Reports.

[^856]: Ibid.

[^857]: Minnesota Department of Human Services. (October 2003).
    "Minnesota Long-Term Care Reform: Maximizing Non-Governmental
    Resources." Fact Sheet.

[^858]: Minnesota Department of Human Services. (2004). "Status of
    Long-Term Care in Minnesota, 2003." 2004 Legislative Reports.

[^859]: Testimony of Paul Strebe, Minnesota Department of Employee
    Relations. (2004). Summary of March 5, 2004, Briefing. Series of
    Policy Briefings. Department of Human Services.

[^860]: Minnesota Department of Employee Relations. (2004). "Long-Term
    Care Insurance Options."

[^861]: Defined as Medicaid funding following an individual who moves
    from a nursing facility into the community.

[^862]: U.S. Census Bureau. (2004). 2004 State and County Quick Facts.
    *Texas Quick Facts*.

[^863]: Health and Human Services Commission. (November 3, 2003). H.B.
    2292 Transition Plan.

[^864]: Ibid.

[^865]: To avoid confusion, this report will use the former names of the
    Texas agencies that operate services for people with disabilities,
    when appropriate, because much of the material in the report will
    apply to those agencies.

[^866]: Ibid.

[^867]: Ibid.

[^868]: Texas Health and Human Services Commission. (June 2004). "Texas
    Medicaid in Perspective." Fifth Edition. Available at:
    www.hhsc.state.tx.us/medicaid/reports/PB5/PinkBookhtml.

[^869]: Tilly, J., O'Shaughnessy, C., & Weissert, R. (May 1, 2003). "A
    CRS Review of 10 States: Home- and Community-Based Services---States
    Seek to Change the Face of Long-Term Care: Texas." Congressional
    Research Service Report for Congress and Texas Department of Human
    Services. Budget and Data Management. "2003 Reference Guide."
    Available at: www.bms.dhs.statetx.us.

[^870]: Texas Health and Human Services Commission. (June 2004). "Texas
    Medicaid in Perspective." Fifth Edition.

[^871]: Human Services Research Institute. (October 2004). "Home and
    Community Services Litigation Status Report."

[^872]: www.dshs.statetx.us/mhprograms/ACT/shtm.

[^873]: Texas Mental Health and Mental Retardation Board. Office of
    Program Statistics and Planning. (April 12, 2002). "Report Update
    for State Mental Health Facilities: Final Report."

[^874]: Interagency Task Force on Appropriate Care Settings for Persons
    with Disabilities Report. (November 2003). S.B. 367

[^875]: Texas Department of Housing and Community Affairs. "HOME Program
    Funds for the *Olmstead* Set Aside Still Available." Texas state Web
    site. Available at: www.tdhca.state.tx.us/olmstead.htm.

[^876]: Texas Department of Housing and Community Affairs. (January
    2004). "Breaking Ground" newsletter.

[^877]: S.B. 367. Interagency Task Force.

[^878]: Texas Department of Human Services. "2003 Reference Guide."

[^879]: Texas Health and Human Services Commission. (February 1, 2004).
    "Effectiveness of Consumer Directed Services: First Annual Update."
    Report to the 78th Texas Legislature. And Texas Health and Human
    Service Commission press release. (October 31, 2002). "Waiver
    approved by CMS."

[^880]: Ibid.

[^881]: Medicare+Choice plans offer more benefits generally than
    fee-for-service Medicare coupled with capitated payments and
    beneficiary premiums.

[^882]: When Rider 37 expired, the 2003 legislature enacted Rider 28 to
    continue the program.

[^883]: Klein, J., et al. (February 2004). "Strategies and Challenges in
    Promoting Transitions from Nursing Facilities to the Community for
    Individuals with Disabilities: A Pilot Study of the Implementation
    of Rider 37 in Texas." Community Living Exchange Collaborative at
    ILRU.

[^884]: Ibid.

[^885]: Center for Long-Term Care Integration. (2004). "STAR+PLUS 101."
    Texas Health and Human Services Commission. And "Texas
    STAR+PLUS-State Access Reform-PLUS Long Term Care."
    Medicare/Medicaid Integration Program, University of Maryland Center
    on Aging.

[^886]: Fox-Grage, W., et al. (2003). "States' Response to the
    *Olmstead* Decision: How Are States Complying?" National Conference
    of State Legislatures.

[^887]: Indiana Family and Social Services Administration press release.
    (October 14, 2003). "Indiana receives federal grant to help seniors
    and people with disabilities."

[^888]: *Census 2000.* U.S. Census Bureau.

[^889]: Indiana Family and Social Services Administration Web site.
    [wwwin.gov/fssa](http://www.in.gov/fssa).

[^890]: Indiana Family and Social Services Administration. (2002).
    Statewide IN-Home Services: 2002 Annual Report.

[^891]: Estate recovery refers to the right of a state to file a claim
    against the estate of a Medicaid nursing home resident after the
    death of that resident so the state can be reimbursed for the
    services it provided. In 1993, Congress passed legislation
    specifically precluding states from protecting assets from recovery,
    but exempted the four states that had already set up the Partnership
    programs under Robert Wood Johnson Foundation demonstration grants.

[^892]: www.longtermcareinsurance.IN.gov.

[^893]: Family and Social Services Administration Web site. (2004).
    "Indiana Long-Term Insurance Program." Available at: www.in.gov/fssa

[^894]: Burwell, B. (May 25, 2004). Medicaid Long Term Care Expenditures
    in FY 2003. The MEDSTAT Group, Inc.

[^895]: Family and Social Services Administration. (June 30, 2003*).
    Governor's Commission on Home and Community-Based Services.* June
    2003 Report.

[^896]: [www.state.in.us/fssa/servicedisabl/olmstead/comprehensive.html](http://www.state.in.us/fssa/servicedisabl/olmstead/comprehensive.html).

[^897]: Family and Social Services Administration. (June 30, 2003).
    *Governor's Commission on Home and Community-Based Services.*

[^898]: Senate Enrolled Act No. 493. (May 6, 2003). An Act to Amend the
    Indiana Code Concerning Human Services. Available at:
    [www.in.gov/legislative/bills/2003/SE/SE0493.1.html](http://www.in.gov/legislative/bills/2003/SE/SE0493.1.html).

[^899]: Burwell, B. (May 25, 2004). Medicaid Long Term Care Expenditures
    in FY 2003. The MEDSTAT Group, Inc.; Indiana Family and Social
    Services Administration. (2002). Statewide IN-Home Services: 2002
    Annual Report.

[^900]: Braddock, D., & Hemp, R. (Spring 2004). "Developmental
    Disabilities Services in Indiana: 2004 Progress Report. Reported in
    *The ARC News in Indiana.* Coleman Institute, University of
    Colorado.

[^901]: Indiana S.B. 317 Task Force. (July 1998). "Comprehensive Plan
    for the Design of Services for People with Developmental
    Disabilities." Family and Social Services Administration.

[^902]: Indiana Family and Social Services Administration. Mentally
    Retarded/Developmentally Disabled Commission Report. (November 6,
    2003). "Implementation of 317 Plan."

[^903]: Ibid.

[^904]: Braddock, D., & Hemp, R. (Spring 2004). "Developmental
    Disabilities Services in Indiana: 2004 Progress Report. Reported in
    *The ARC News in Indiana.* Coleman Institute, University of
    Colorado.

[^905]: Family and Social Services Administration press release. (July
    28, 2003). "Transitions from institutions to community easier,
    thanks to FSSA."

[^906]: Governor's Council for People with Disabilities. (July 2003
    update). *Third Edition of the Consumer Guide to Medicaid Waiver
    Home and Community Based Services.*

[^907]: FSSA Fact Sheet. (2003). "Total Persons Served in the Community
    by Population and State Fiscal Year." Family and Social Services
    Administration.

[^908]: Family and Social Services Administration. (June 30, 2003).
    *Governor's Commission on Home and Community-Based Services.*

[^909]: Ibid.

[^910]: Indiana Family and Social Services Administration. (2002).
    Statewide IN-Home Services: 2002 Annual Report.

[^911]: Ibid.

[^912]: Medstat. (May 16, 2003). "Indiana---Coalition of Organizations
    with Resources about Home Ownership and Rental." *Promising
    Practices in Home and Community-Based Services*. Medstat for the
    U.S. Centers for Medicare and Medicaid Services.

[^913]: Ibid.

[^914]: Governor's Commission on Long Term Caregivers. Report and
    recommendations. Family and Social Services Administration. (2002).
    Available at:
    [www.in.gov/fssa/community/pdf/LTCreport.pdf](http://www.in.gov/fssa/community/pdf/LTCreport.pdf)[.]{.underline}

[^915]: Family and Social Services Administration. (June 30, 2003).
    *Governor's Commission on Home and Community-Based Services.*

[^916]: Family and Social Services Administration. (2002). Grant
    narrative. Federal Community Personal Assistance Services and
    Supports.

[^917]: Administrative Rules Oversight Committee. (August 19, 2004).
    "Report of the Indiana Family and Social Services Administration on
    the Implementation of SEA 493."

[^918]: Family and Social Services Administration. (June 30, 2003).
    *Governor's Commission on Home and Community-Based Services.*

[^919]: National Council on Disability. (September 2003). Report to the
    President and Congress on *Olmstead.*

[^920]: Family and Social Services Administration Web site. (June 2002).
    Real Choice Systems Change Grant Project Narrative.

[^921]: These provisions allow the spouse of a person receiving
    Medicaid-covered services to retain a certain amount of income and
    assets for expenses of living in the community.

[^922]: Family and Social Services Administration press release.
    (October 14, 2003). "Indiana receives federal grant to help seniors
    and people with disabilities."

[^923]: The Management Group, Inc. for Waushara County Department of
    Human Services. (June 2003). Cooperative Care: The First Year. An
    Evaluation and Analysis of the Waushara County Care Workers
    Cooperative. Madison, WI.

[^924]: Bau, M., & Harrington, D. (May/June 2003). "House Calls," Rural
    Cooperatives. Rural Business-Cooperative Service, U.S. Department of
    Agriculture, 70:3.

[^925]: The Management Group, Inc. for Waushara County Department of
    Human Services. (June 2003). Cooperative Care: The First Year. An
    Evaluation and Analysis of the Waushara County Care Workers
    Cooperative. Madison, WI.

[^926]: Bau, M., & Harrington, D. (May/June 2003). "House Calls," Rural
    Cooperatives. Rural Business-Cooperative Service, U.S. Department of
    Agriculture, 70:3.

[^927]: Bau, M., Cooperative Development Specialist, USDA Rural
    Development -- Wisconsin. (2004). Delivering Co-op Development
    Technical Assistance. The Story of Cooperative Care, A Worker-owned
    Co-op of Home Care Providers. Accessed 2004. Available at:
    www.wisc.edu/uwcc/ace/04/bau/bau.pdf.

[^928]: Practice Profile Database on the National Clearinghouse on the
    Direct Care Workforce Web site. Available at:
    www.directcareclearinghouse.org/.

[^929]: Bau, M., & Harrington, D. (May/June 2003). "House Calls," Rural
    Cooperatives. Rural Business-Cooperative Service, U.S. Department of
    Agriculture, 70:3.

[^930]: The Management Group, Inc. for Waushara County Department of
    Human Services. (June 2003). Cooperative Care: The First Year. An
    Evaluation and Analysis of the Waushara County Care Workers
    Cooperative. Madison, WI.

[^931]: Bau, M., Cooperative Development Specialist, USDA Rural
    Development -- Wisconsin. (2004). Delivering Co-op Development
    Technical Assistance. The Story of Cooperative Care, A Worker-owned
    Co-op of Home Care Providers. Accessed 2004. Available at:
    www.wisc.edu/uwcc/ace/04/bau/bau.pdf.

[^932]: The Management Group, Inc. for Waushara County Department of
    Human Services. (June 2003). Cooperative Care: The First Year. An
    Evaluation and Analysis of the Waushara County Care Workers
    Cooperative. Madison, WI.

[^933]: Ibid.

[^934]: National Time Bank Network. (2000). Intervention 4. Issue Papers
    -- People's Health Movement PHM.

[^935]: New Economics Foundation. (July 2001). Time Banks: A Radical
    Manifesto for the UK.

[^936]: Cahn, E.S. (undated). The Non-Monetary Economy. Found on the
    Time Dollar USA Web site. Available at:
    www.timedollar.org/documents/Non-MonetaryEconomy.pdf.

[^937]: National Time Bank Network. (2000). Intervention 4. Issue Papers
    -- People's Health Movement PHM.

[^938]: Time Dollar Institute. (undated). "The Time Dollar How-To
    Manual: A comprehensive guide to starting and running your time
    dollar exchange,"

[^939]: Time Dollar USA Web site: www.timedollar.org/.

[^940]: Boyle, D. (undated). The New Philanthropy. The New Economics
    Foundation, London England.

[^941]: Boyle, D. The Co-Production Principle and Time Dollars. The Time
    Dollar USA Web site. Available at:
    www.timedollar.org/documents/Co-ProductionPrinciple.pdf.

[^942]: Time Dollar Institute. Time to Unite: Third International Time
    Banking Congress Report Autumn 2004. Available at:
    www.timedollar.org/documents/Congressreportfinalforweb_000.pdf.

[^943]: Time Dollar USA Web site: www.timedollar.org/.

[^944]: Time Dollar Institute. Time to Unite: Third International Time
    Banking Congress Report Autumn 2004. Available at:
    www.timedollar.org/documents/Congressreportfinalforweb_000.pdf.

[^945]: The Co-Production Principle and Time Dollars. A report by David
    Boyle. Found on the Time Dollar USA Web site:
    www.timedollar.org/documents/Co-ProductionPrinciple.pdf.

[^946]: Time Dollar USA Web site: www.timedollar.org/.

[^947]: Boyle, D. The Co-Production Principle and Time Dollars. The Time
    Dollar USA Web site. Available at:
    www.timedollar.org/documents/Co-ProductionPrinciple.pdf.

[^948]: New Economics Foundation. (July 2001). Time Banks: A Radical
    Manifesto for the UK.

[^949]: Time Dollar Institute. (undated). "The Time Dollar How-To
    Manual: A comprehensive guide to starting and running your time
    dollar exchange,"

[^950]: Time Dollar USA Web site. Available at: www.timedollar.org/.

[^951]: Maine Time Dollar Network Web site. Available at: www.NETEN.org.

[^952]: Time Dollar Institute. (undated). "The Time Dollar How-To
    Manual: A comprehensive guide to starting and running your time
    dollar exchange,"

[^953]: Root Cause Institute. (August 2004). Improving Efficiency &
    Sustainability -- Summary Report of Interviews with Local Time
    Banks. Time Banks International Conference.

[^954]: Recent data shows that more than 5.8 million (18 percent) of
    people age 65 and older who did not reside in institutions such as
    nursing facilities had difficulty performing either ADLs or IADLs
    without assistance. Seniors' Commission Report, p. 26.

[^955]: Disability advocates and housing professionals agree that this
    figure underestimates the number of people with disabilities with
    worst-case housing needs, because it is based solely on those people
    with disabilities receiving SSI and does not include other
    low-income people with disabilities.

[^956]: U.S. Department of Housing and Urban Development. (December
    2003). Trends in Worst Case Needs for Housing, 1978-1999: A Report
    to Congress on Worst Case Housing Needs. Plus Update on Worst Case
    Needs in 2001. Office of Policy Development and Research, HHS.

[^957]: National Council on Disability. (December 2, 2004). Livable
    Communities for Adults with Disabilities. Washington, DC: NCD.

[^958]: Roundtable for a New Initiative in Affordable Cooperative
    Ownership. Held at the Ford Foundation in New York City, October 27,
    2004. Hosted by the National Cooperative Bank and NCB Development
    Corporation.

[^959]: Ibid.

[^960]: Barnette, M. (October 2004). Creating Multifamily Homeownership
    at Scale: Affordable Housing Cooperatives in New York City,
    Washington, DC, and Chicago. A publication of the Pratt Institute
    Center for Community and Environmental Development. Prepared for NCB
    Development Corporation.

[^961]: Cooperative Housing Coalition. (2002). People Building
    Communities: Affordable Cooperative Housing. Washington, DC.

[^962]: Lewis, T., & Higgins, L.R. (October 2004). The Advantages and
    Disadvantages of Cooperative Housing as an Affordable Alternative. A
    paper prepared for NCB Development Corporation.

[^963]: NCB Development Corporation. (January 2004). Creating Affordable
    Cooperative Homeownership. Case Statement---Together We Can.
    Washington, DC: NCBDC.

[^964]: Cooperative Housing Coalition. (2002). People Building
    Communities: Affordable Cooperative Housing. Washington, DC.

[^965]: NCB Development Corporation. (January 2004). Creating Affordable
    Cooperative Homeownership. Case Statement---Together We Can, January
    2004. Washington, DC: NCBDC.

[^966]: NCB Development Corporation. (Revised September 2003). Together
    We Can: Affordable Cooperative Homeownership Initiative. Washington,
    DC: NCBDC.

[^967]: Together We Can, a program of the NCB Development Corporation,
    Web site. Available at: www.ncbdc.org/ (link to "Together We Can
    Program" under Affordable Co-op Housing).

[^968]: Asset Building Initiatives for People with Cognitive
    Impairments. Fact Sheet, No Place Like Home Communities,
    Robbinsdale, Minnesota.

[^969]: Housing Choice Summary, September 2004. Fact Sheet, No Place
    Like Home Communities, Robbinsdale, Minnesota.

[^970]: No Place Like Home Communities Web site. Available at:
    www.nplhc.org.

[^971]: NPLHC's Needs for Technical Assistance. (November 9, 2004).
    Discussion Paper.

[^972]: Saegart, S., & Benitez, L. (forthcoming). "Limited Equity
    Housing Cooperatives: Defining a Niche in the Low-Income Housing
    Market." *Journal of Planning Literature*.

[^973]: NCB Development Corporation. (January 2004). Creating Affordable
    Cooperative Homeownership. Case Statement---Together We Can.
    Washington, DC: NCBDC.

[^974]: NPLHC's Needs for Technical Assistance. (November 9, 2004).
    Discussion Paper.

[^975]: Wetherow, D., & Wetherow, F. (Revised August 2004). Microboards
    and Microboard Association Design, Development and Implementation.
    Found on the Community Works Web site. Available at:
    www.communityworks.info/articles/Microboard.htm.

[^976]: Vela Microboard Association of British Columbia Web site.
    Available at: www.Microboard.org/.

[^977]: National Council on Disability. (December 2, 2004). Livable
    Communities for Adults with Disabilities. Washington, DC: NCD.

[^978]: Offner, R.B., Cameron, C.T., and Golden, J. (July 2001). The
    Self-Directed Support Corporation (SDSC) Model. A working paper of
    the Inclusion Research Institute.

[^979]: Self-Directed Support Corporations. A Power Point presentation
    of the Inclusion Research Institute.

[^980]: Self-Directed Support Corporations Web site. Inclusion Research
    Institute. Available at: www.self-determined.org/.

[^981]: Self-Directed Support Corporations. A Power Point presentation
    of the Inclusion Research Institute.

[^982]: Self-Directed Support Corporations-A self-determination model.
    (February 9, 2004). Monday Morning in Washington, DC. (Inclusion
    Research Institute, 2002).

[^983]: O'Brien, J. (1999). Community Engagement: A Necessary Condition
    for Self-Determination and Individual Funding. Paper presented at
    the meeting of the Community Engagement Working Group, Pickering,
    Ontario, Canada.

[^984]: Moseley, C., & Nerney, T. (1998). Emerging Best Practice in
    Self-Determination. Common Sense, New Hampshire: Publication of the
    National Program Office on Self-Determination.

[^985]: Moseley, C. (1999). Making Self-Determination Work. New
    Hampshire: Publication of the National Program Office on
    Self-Determination.

[^986]: Self-Directed Support Corporations Web site. Inclusion Research
    Institute. Available at: www.self-determined.org/.

[^987]: Meet Joshua! Texas Self-Determination Symposium. Found on the
    Employment for All Web site. Available at:
    www.employmentforall.org/articles/articles.html.

[^988]: Golden, J. (2004). What a Difference an SDSC Can Make: Joshua's
    House Incorporated! by Jackie Golden. Available at:
    www.bridges4kids.org/pdf/Golden-Microboards.pdf.

[^989]: Davis, S., Ed. (2003). A Family Handbook on Future Planning,
    (2003). Produced by The Arc of the United States and the RRTC on
    Aging with Developmental Disabilities.

[^990]: Pooled Trust Programs for People with Disabilities: A guide for
    families. The Arc of the United States (2002).

[^991]: Ibid.

[^992]: Heller, T., & Factor, A. (1991). Permanency Planning for Adults
    with Mental Retardation Living with Family Caregivers. *American
    Journal on Mental Retardation*, 96: 163--76.

[^993]: Heller, T., & Factor, A. (1993, a). Aging Family Caregivers:
    Changes in burden and placement desire. *American Journal on Mental
    Retardation*, 98: 417--26.

[^994]: Davis, S., & Berkobien, R. (2003). Best Practices in Pooled
    Trust Programs. The Arc of the United States and the RRTC on Aging
    with Developmental Disabilities. More information available at:
    www.uic.edu/orgs/rrtcamr/research3_2.htm.

[^995]: Heller, T., & Factor, A. (1991). Permanency Planning for Adults
    with Mental Retardation Living with Family Caregivers. *American
    Journal on Mental Retardation*, 96: 163--76.

[^996]: Heller, T., & Factor, A. (1993, a). Aging Family Caregivers:
    Changes in burden and placement desire. *American Journal on Mental
    Retardation*, 98: 417--426.

[^997]: Enhanced Life Options. Developing enhanced life options for
    people with disabilities Web site. Available at: www.elonh.org/.

[^998]: Family Reference Materials. Enhanced Life Options Trust Program.
    This article is posted on the Web site with the permission of the
    author and the publisher, and is based on information presented at
    the December 6, 2002, New Hampshire Bar Association Continuing Legal
    Education Program, Bedford, New Hampshire, and also at the 2003 New
    Hampshire Family Support Conference, Conway, New Hampshire.
    Available at: www.elonh.org/frm/frm1.html.

[^999]: HM Treasury. (April 2001). Saving and Assets for All: The
    Modernisation of Britain's Tax and Benefit System.

[^1000]: HM Treasury and Inland Revenue. (October 2003). Detailed
    proposals for the Child Trust Fund,

[^1001]: HM Treasury. (April 2001). Saving and Assets for All: The
    Modernisation of Britain's Tax and Benefit System.

[^1002]: Child Trust Fund Your Questions Answered. Child Trust Fund --
    CTF -- UK Government Child Trust Funds for children. Homeowners
    Friendly Society Web site. Accessed 2004. Available at:
    www.homeowners.co.uk/ctf_faq.htm.

[^1003]: HM Treasury and Inland Revenue. (October 2003). Detailed
    proposals for the Child Trust Fund.

[^1004]: Frequently Asked Questions about the F&C Child Trust Fund.
    First in Investment Trust Web site. Accessed 2004. Available at:
    www.fandc.com/en/uk/pi/promotions/ctffaq.asp.

[^1005]: Introducing the Child Trust Fund. Inland Revenue. Child Trust
    Fund Web site. Accessed 2004. Available at:
    www.childtrustfund.gov.uk/assetRoot/04/00/24/44/04002444.pdf.

[^1006]: Introduction to the Child Trust Fund. Child Trust Fund Homepage
    -- The Child Trust Fund Web site. Accessed 2004. Available at:
    www.childtrustfund.gov.uk/Homepage/fs/en.

[^1007]: HM Treasury and Inland Revenue. (October 2003). Detailed
    proposals for the Child Trust Fund.

[^1008]: Hind, G., Consumer Education Services, FSA. (February 25,
    2003). Financial Education and The Child Trust Fund. Paper presented
    at IPPR seminar on "The Role of Financial Education in Asset-based
    Policies."

[^1009]: HM Treasury and Inland Revenue. (October 2003). Detailed
    proposals for the Child Trust Fund.

[^1010]: HM Treasury. (April 2001). Saving and Assets for All: The
    Modernisation of Britain's Tax and Benefit System.

[^1011]: Mensah, L., Schneider, R., & Aboulfadl, M. (June 2004). The
    Child Trust Fund: A Universal Long-Term Savings Policy. Aspen
    Institute, Initiative on Financial Security. Accessed 2004.
    Available at: www.aspeninstitute.org/.

[^1012]: Language added to U.S. Senate Bill, 109^th^ Congress - S.B.
    705: Establish an Interagency Council on Meeting the Housing and
    Service Needs of Seniors, April 5, 2005, to include people with
    disabilities.

[^1013]: Ibid.