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76–174 PDF 2001

S. HRG. 107–179

LONG–TERM CARE AFTER OLMSTEAD: AGING AND

DISABILITY GROUPS SEEK COMMON GROUND

HEARING

BEFORE THE

SPECIAL COMMITTEE ON AGING

UNITED STATES SENATE

ONE HUNDRED SEVENTH CONGRESS

FIRST SESSION

WASHINGTON, DC

SEPTEMBER 24, 2001

Serial No. 107–15

Printed for the use of the Special Committee on Aging

(

SPECIAL COMMITTEE ON AGING

JOHN B. BREAUX, Louisiana, Chairman

HARRY REID, Nevada

HERB KOHL, Wisconsin

JAMES M. JEFFORDS, Vermont

RUSSELL D. FEINGOLD, Wisconsin

RON WYDEN, Oregon

BLANCHE L. LINCOLN, Arkansas

EVAN BAYH, Indiana

THOMAS R. CARPER, Delaware

DEBBIE STABENOW, Michigan

JEAN CARNAHAN, Missouri

LARRY CRAIG, Idaho, Ranking Member

CONRAD BURNS, Montana

RICHARD SHELBY, Alabama

RICK SANTORUM, Pennsylvania

SUSAN COLLINS, Maine

MIKE ENZI, Wyoming

TIM HUTCHINSON, Arkansas

PETER G. FITZGERALD, Illinois

JOHN ENSIGN, Nevada

CHUCK HAGEL, Nebraska

MICHELLE EASTON, Staff Director

LUPE WISSEL, Ranking Member Staff Director

(II)

C O N T E N T S

Page

Opening Statement of Senator John Breaux ......................................................... 1

Statement of Senator Larry E. Craig ..................................................................... 2

PANEL I

Kathryn G. Allen, Director, Health Care, Medicaid and Private Health Insurance Issues, U.S. General Accounting Office, Washington, DC ....................... 3

Sara Rosenbaum, Director, George Washington University School of Public

Health and Health Policy, Washington, DC ...................................................... 35

Jane Isaacs Lowe, Senior Program Officer, Robert Wood Johnson Foundation,

Washington, DC ................................................................................................... 57

Laura Brackin, Director, Louisiana Governor’s Office of Disability Affairs,

Baton Rouge, LA .................................................................................................. 69

(III)

(1)

LONG-TERM CARE AFTER OLMSTEAD: AGING

AND DISABILITY GROUPS SEEK COMMON

GROUND

MONDAY, SEPTEMBER 24, 2001

U.S. SENATE,

SPECIAL COMMITTEE ON AGING,

Washington, DC.

The committee met, pursuant to notice, at 1:02 p.m., in room

SD–192, Dirksen Senate Office Building, Hon. John B. Breaux

(Chairman of the Committee) presiding.

Present: Senators Breaux and Craig.

OPENING STATEMENT OF SENATOR JOHN B. BREAUX,

CHAIRMAN

The CHAIRMAN. The Committee on Aging will please come to

order.

I want to thank all of our guests who are here with us today for

what I consider to be a most important hearing, and our ranking

colleague, Senator Craig, for being with us as well.

The events of the past 2 weeks have given all of us reason to

think about what we believe in and what our country stands for.

As Americans, we of course believe in personal liberty and freedom,

but we also recognize the rule of law. As individuals, we are very

proud of our independence and our self-reliance, but we are also

very grateful for the comfort and support of our families and

friends.

As a society, of course, we also believe in the value of private enterprise, but we also know that Government plays a very important

role in protecting our liberties and also safeguarding and helping

to improve the quality of our lives. These traditional American values have carried us through very difficult times before and will do

so again.

But today we also continue the business of Congress and the

work of this Aging Committee. These traditional values are especially relevant to the issues that are before the committee this

afternoon.

This is the third of a series of hearings that this committee has

held in which we continue to examine the need for reform of our

long-term care system in this country. In one sense, the witnesses

who appear here today will help us to do that by interpreting law,

by analyzing statistics, and by providing us with recommendations

based on their professional as well as personal experiences.

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But in a deeper sense, the message that they bring us also reflects traditional American values. Older Americans in every part

of our country want to prolong their independence and also their

freedom. They want to live in familiar communities and surroundings and in the company of family and friends.

To help them achieve those goals, we need to build new partnerships that combine the resources of private enterprise and of Government; and we need to remember that the functional limitations

associated with aging are a form of disability and that we can draw

upon the independent living skills learned by individuals who have

developed disabilities caused by chronic or catastrophic illness or

even mental illness.

I would like to recognize Senator Larry Craig for any comments

that he might have.

OPENING STATEMENT OF SENATOR LARRY E. CRAIG

Senator CRAIG. Mr. Chairman, again let me thank you for calling

this third hearing in our series on long-term care.

I would also like to thank the witnesses from whom we are about

to hear for being here today to testify on long-term care after

Olmstead, aging and disability groups seeking the kind of common

ground that I think the chairman has just spoken to.

Over the past months, we have examined many aspects of longterm care. I think we have gained an understanding of the immense challenges facing our system in the coming years. We have

discovered innovative ways that States are preparing their systems. With this last hearing, we hope to learn from the experiences

of the disability community so we can build a foundation for working together.

People with disabilities have been receiving services in the home

and community setting for many years. It is appropriate for older

Americans to look to this group for guidance for effective ways to

deliver quality care to individuals.

One of the ways the disability community has been receiving

these services is through private-public partnerships, and I am especially excited to hear about these types of approaches.

Through this series of hearings, we have learned invaluable information about our Nation’s long-term care services, and the

chairman and I will now be working together to evaluate this information and looking to construct legislation to make long-term care

systems more adaptable to a changing society. That certainly is our

goal, and to ensure accountability and high-quality care while

doing this.

Again I want to thank the witnesses and the chairman for this

hearing.

Thank you, Mr. Chairman.

The CHAIRMAN. Thank you, Senator.

We would like to welcome our panel this afternoon. We would

like to welcome Ms. Kathryn Allen, who is Director of Health Care,

Medicaid and Private Health Insurance Issues, with the General

Accounting Office; Ms. Sara Rosenbaum, who is Director of the

George Washington University Center for Health Services Research

and Policy here in Washington; Dr. Jane Isaacs Lowe, who is Senior Program Office at the Robert Wood Johnson Foundation at

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Princeton; and, from my State of Louisiana, the Director of the

Louisiana Governor’s Office of Disability Affairs, Ms. Laura

Brackin. Thank you, Laura, particularly for coming up; I know that

we have all had to rearrange things because of the circumstances

in the country. And to all of you, we deeply appreciate your being

with us and look forward to your testimony.

Ms. Allen, thanks for the good work that GAO has done. I note

that you have an over-20-page document that you have presented

to us. I would encourage all organizations to take the opportunity

and time to review it; it is an excellent summary of what has happened since Olmstead. We would ask you to summarize it, and

please begin.

STATEMENT OF KATHRYN G. ALLEN, DIRECTOR, HEALTH

CARE, MEDICAID AND PRIVATE HEALTH INSURANCE

ISSUES, U.S. GENERAL ACCOUNTING OFFICE, WASHINGTON,

DC

Ms. ALLEN. Thank you, Mr. Chairman and Senator Craig.

It is a pleasure to be here today as you continue this series of

hearings on long-term care, and with today’s focus particularly exploring implications of the Supreme Court Olmstead decision in addition to other issues.

What I would like to do is focus my remarks on three brief

points—highlights of the decision itself in terms of the Olmstead

case; an overview of current and future demand and financing of

long-term care services in which the Olmstead decision will have

some effect; and finally, implications of the decision for State longterm care programs.

The 1999 Olmstead decision has been widely interpreted as actually going far beyond the specific circumstances of the case that

was heard. This particular case involved two women with developmental disabilities and mental illness who were inpatients in a

State psychiatric hospital and whose physicians had determined

that a community-based setting would be appropriate for their

needs.

The Supreme Court concluded that in order to avoid violating

Title II of the Americans with Disabilities Act, ADA, States would

be required to provide community-based treatment for persons with

mental disabilities when three conditions are present—that treatment professionals determine that such placement is appropriate;

that the affected persons do not oppose such treatment; and that

the treatment can be reasonably accommodated taking into account

the resources available to the State and the needs of others with

mental disabilities.

Beyond the specific circumstances of this case, the Olmstead decision is being interpreted to extend to persons with physical as

well as mental disabilities, to those in nursing homes and other institutional settings in addition to psychiatric hospitals, and to those

who already live in the community but are at risk of institutionalization.

As such, it carries broader implications for the provision of longterm care, not just for persons with disabilities who currently need

services, but also for the expected changes that loom on our horizon.

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Without question, the approaching tidal wave of aging baby

boomers will generate new demand for long-term care services that

will increasingly tax our capacity, that of public and private resources. Although a chronic physical and mental disability can and

does strike at any age, whether child, young adult or senior, the

risk of developing a disability increases as a person ages. As a result, the number of disabled elderly individuals who will need care

by the year 2040 is projected to be two to four times the current

number.

There are scores of Federal programs that support persons with

disabilities. We counted about 70. But implications are most profound for Medicaid, with its open-ended commitment to serve eligible persons. Medicaid is now the primary public payer for longterm care. It paid about 44 percent of the $134 billion spent nationwide on long-term care in 1999 for both institutional and home and

community-based services. How Medicaid serves individuals with

disabilities, however, varies widely from State to State.

States have considerable flexibility to decide within broad Federal guidelines who and what services they will cover and in what

settings. While historically, Medicaid programs have been viewed

as being slanted toward institutional care, spending for home and

community-based services has increased more than fourfold over

the past decade, from $4 billion to over $18 billion last year.

But these are still optional services that are not federally required, so States can and do vary widely in terms of the degree to

which they choose to cover these services.

With the continuing shift to greater provision of community care

and the reduced reliance on institutions that actually predated

Olmstead, we need to look beyond the implications for Federal programs and public programs. Individuals and their families will also

certainly be impacted. Private resources that include out-of-pocket

spending and insurance already make up the second-largest share

of long-term care spending, about 40 percent. But this does not include the unspecified but high cost of care provided by family members and other informal caregivers.

An estimated 60 percent of disabled elderly individuals living in

their own homes and communities rely exclusively on their families

and other unpaid sources for their care. While the shift from institutional to in-home and community care offers many benefits and

advantages for persons with disabilities, formal or paid services

most often satisfy only a portion of these individuals’ needs, with

the balance falling to family and other informal caregivers.

My third and final point is that the implications of the Olmstead

decision are still unfolding for States and their long-term care programs. Although the Supreme Court ruled that under certain circumstances, institutionally based services may violate the ADA,

the Court also acknowledged that the community may not be the

most appropriate setting for many individuals. It further recognized that States’ responsibilities are not boundless. There are limits to what States can do given available resources and the obligation to provide a range of services for persons with disabilities.

The ADA does not require States to fundamentally alter their existing programs as they make so-called reasonable modifications to

avoid discrimination. The Olmstead decision therefore leaves open

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many questions for States and lower courts to resolve in determining States’ obligations as to the nature and scope of their programs.

To date, most States’ responses to Olmstead have focused on preparing plans that lay out goals and actions. Because most of these

are still works-in-progress, it is too soon to tell how and when they

will be implemented. State programs will no doubt also be influenced over time by the resolution of the many pending lawsuits

and complaints that have been filed seeking access to appropriate

services.

In conclusion, Mr. Chairman, we face a growing need to anticipate and plan for the inevitable increase in demand for long-term

care in settings that offer both varying options and choices. This

increased demand will emanate not just from the Olmstead decision but also from the needs and preferences of the baby boom generation. Finding ways to develop and finance additional service capacity that meets needs, allows choice, and leverages limited public

and private resources will be the ongoing challenge for this generation, families, and Federal, State, and local governments.

Mr. Chairman, this concludes my prepared remarks.

The CHAIRMAN. Thank you very much, Ms. Allen.

Ms. Rosenbaum.

[The prepared statement of Ms. Allen follows:]

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STATEMENT OF SARA ROSENBAUM, DIRECTOR, GEORGE

WASHINGTON UNIVERSITY SCHOOL OF PUBLIC HEALTH

AND HEALTH POLICY, WASHINGTON, DC

Ms. ROSENBAUM. Thank you very much, Mr. Chairman and Senator Craig.

The George Washington University School of Public Health

greatly appreciates this opportunity to testify before you today. We

have been asked to present testimony on a special study that we

have conducted over the past year which examines in detail, on an

anonymous basis, the Olmstead complaints, that is, complaints

filed with the Office for Civil Rights at HHS alleging a failure to

provide care in the most integrated setting under Title II.

With the support of the Center for Health Care Strategies, part

of the Robert Wood Johnson Foundation, we have been analyzing

these complaints for about 12 months. We have analyzed the 334

complaints that have been filed since 1996, and I am going to summarize the findings from the analysis; you have the full analysis,

of course, with you.

The CHAIRMAN. Excuse me. You said since 1996, so that is prior

to Olmstead?

Ms. ROSENBAUM. Yes. The Olmstead case, of course, originated

well before the year that the Supreme Court actually handed down

its decision, so there have been most integrated setting complaints

filed under the ADA for a number of years; and before that, of

course, under 504 of the Rehabilitation Act, many of these claims

also would have been germane.

In brief, our review of the complaints, which should not as a body

be understood to be representative of all people who might be medically unjustifiably institutionalized—we do not know if they are

representative of that whole group of Americans; nonetheless we

think these complaints shed a lot of light on the situations facing

people who believe they are in this situation—our review of the

complaints reveals certain distinct patterns which we think will be

extremely helpful to the committee as it begins to fashion recommendations.

The first observation is that this is a nationwide problem, not

confined to any one State or any one region of the country. It is

all over. The number of complaints by region varies, but it is safe

to say that there is not a State that is not facing this issue, and

it affects all residents of the United States.

The age range of the complainants is predominantly focused on

adults ages 22 to 64. This is where many of the complainants are.

There is a fair number of children. There is a smaller number of

persons over age 65 who filed complaints; we believe that that is

an artifice of the complaint process and is not reflective of the lack

of a problem related to medically unjustifiable institutionalization

among elderly people.

Residential status of the complainants, as Ms. Allen noted, is a

broad decision, and indeed, 30 percent of all the complaints and 40

percent of the children’s complaints involved residents of the community, not residents of institutions. So when you think about this

problem, you need to think about it across residential status.

Within the group of people who are in the community, almost

two-thirds are living with their families and clearly feeling under

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threat over the ability to maintain a family residential status. Thirty-five percent are struggling to live on their own or in another setting in the community, but we were quite struck by the fact that

so many do live with their families—an indication that something

is wrong with the mechanism for providing community supports if

you feel this unable to maintain a community residential status

even with your own family.

Within the group of institutionalized beneficiaries or complainants, most are in nursing facilities overall; a fair number, one-quarter, are in psychiatric facilities. Among children, however, the picture is quite different. Among children, a fair number—we simply

could not tell where they were, but there appeared to be a fair

number of complaints from long-term hospitals, from residential

treatment facilities, from the kinds of facilities that children with

profound mental and emotional needs may be in for special education purposes.

In the case of the diagnosis—and we think this may be some of

the most helpful information to you—a physical disability diagnosis

is the overwhelmingly common diagnosis. There is a very substantial presence of mental diagnoses, mental retardation, mental illness, but if I had to draw a picture for you today of the typical person filing a complaint alleging unjustifiable institutionalization, it

would be an adult with very significant physical disabilities. In the

case of children, however, again, the presence of dual and trebly diagnosed children is very high. Mental illness, mental retardation,

developmental disabilities, in combination with a physical disability, are much more common.

The service needs that people seek should be no surprise. The

two biggest service needs are a place to live and health services in

the home, and this I think is consistent with the nature of who is

complaining. People want to have a place to live that is not an institution, they obviously cannot secure it, and they need in-home

services to be able to achieve that result.

This is a very rapid statistical overview of the findings. Many of

the letters are just simply heartbreaking in the description of the

predicaments that people find themselves in. As you think through

a remedy for this issue, it is clear that it extends well beyond the

Medicaid program in its current form; it extends into housing, social services, education, and other supports needed to thrive in a

community.

Thank you very much.

The CHAIRMAN. Thank you very much, Professor Rosenbaum.

Next, Ms. Lowe.

[The prepared statement of Ms. Rosenbaum follows:]

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STATEMENT OF JANE ISAACS LOWE, SENIOR PROGRAM

OFFICER, ROBERT WOOD JOHNSON FOUNDATION, WASHINGTON, DC

Dr. LOWE. Mr. Chairman and Senator Craig, good afternoon.

Thank you for inviting me to testify this afternoon on the work the

Robert Wood Johnson Foundation has done to improve long-term

care in America.

I am pleased to share some of the lessons we have learned from

our grant-making in this area. But let me begin first by putting a

human face on this complex issue by telling you about Mrs. K, who

lived on a farm by herself in rural Illinois.

At age 85, Mrs. K suffered from hearing and vision loss and was

increasingly confined to a wheelchair due to severe arthritis. An Illinois home care specialist visited several times a week, as did several of her children, but she was slowly losing the ability to live

independently without help. Although she resisted giving up her

home, she was amenable to living in a senior apartment complex;

however, the nearest facility was far from her home town and also

beyond her financial means. She feared that it was just a matter

of time before she would have to go to a nursing home.

Mrs. K was lucky. An affordable assisted living facility was built

10 miles from her home as a result of the Foundation’s Coming

Home Program, a national program designed to increase the number of affordable assisted living programs in rural America.

Mrs. K was one of the first seniors to qualify for residence in

Cache Valley, located in a town of 550 people. Today she has her

own apartment, filled with her furniture, receives meals and help

with dressing, bathing and medications, and as a result has

friends, her independence, and help when she needs it.

There are many people like Mrs. K who are living in rural, suburban, and urban areas. They are alone and isolated, living with

chronic illnesses and limited resources and, like Mrs. K, they need

affordable housing and service options.

Mrs. K’s story is just one example of our work to develop longterm care programs for vulnerable and frail older persons and people with disabilities. The Robert Wood Johnson Foundation’s work

in this area is funded as part of our goal to improve care and support for people with chronic illness. This has been one of our principal programming goals since 1991.

Since that time, the Foundation has awarded more than 3,000

grants totaling close to $1 billion to improve long-term care and

care for people with chronic illness. Through our grant-making, we

test new ideas and develop new models, and these innovations necessarily fall short of broad-scale change, but with careful interpretation provide valuable lessons.

The three most salient lessons we have learned from our grantmaking are as follows. First, consumers and/or their families must

be involved in decisions about their care. Second, more alternatives

to institutional long-term care must be created. And third, financing must be more flexible in order to support these options.

Let me talk for just a moment about consumer-directed care. One

very promising model that the Foundation has supported in the

past decade is consumer-directed care or self-determination. This

model is based on the premise that control over the nature, extent,

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and duration of services and supports that are available to people

with disabilities and older persons should rest with the person receiving those services and their families.

Beginning with our work with Monodnock Development Services

in Keene, NH, we supported several iterations of the self-determination model—Self-Determination for People with Developmental Disabilities, a 19-state replication of the Monodnock model;

Independent Choices, a consumer-directed program for older

adults; and Cash and Counseling, a Medicaid consumer-directed

demonstration for older adults and persons with disabilities.

Our work on these programs suggests several lessons. First,

when consumers, to the extent they desire, control decisionmaking

about their care, they experience improved quality of life, greater

self-confidence and personal autonomy, and improved access to

services.

Second, implementation of this model and its values requires a

serious commitment to change to ensure that decisionmaking rests

with consumers and that services meet their needs.

Third, supportive services are necessary to promote independence

and are integral to this effort.

The second lesson we have learned is about the alternatives to

institutional care. Today the only widely available service for most

Americans with long-term care needs is nursing home care. As a

foundation, we have worked to expand the number of home and

community-based long-term care options for all Americans, most

especially low-income seniors and disabled adults.

Linking housing with services has been one successful model that

we have invested in. Two Robert Wood Johnson Foundation programs for low-income seniors—No Place Like Home and Coming

Home—have worked extensively in this area.

Another grant to the Corporation for Supportive Housing resulted in the development of housing-based integrated service models for low-income adults with chronic physical and mental illnesses.

For many people, receiving supportive services in their housing

environment can make the difference between institutionalization

in a nursing home and aging in one’s own apartment or home—

what we in the field call ‘‘aging in place’’—and can also reduce

hopelessness for chronically ill and disabled adults.

We have also supported innovations in community-based services. Three examples of this work include Building Health Systems

for People With Chronic Illness; the Program of All-inclusive Care

for the Elderly, or PACE; and Partners in Caregiving. Building

Health Systems focused on the difficult challenges of overcoming

fragmentation of services, financing barriers, and the prevalence of

episodic care through 24 different programs.

The PACE program in contrast replicated a single successful

model that integrates Medicare and Medicaid financing streams

and acute and long-term care services within a single delivery system.

In addition, our support for the Partners in Caregiving Program

ensures that adult day centers help family caregivers by providing

crucial services during work hours when many family members are

not able to look after their loved ones.

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Lesson three relates to the financing. Any discussion of long-term

care reform would be incomplete without addressing financing

questions.

Financial support for a variety of services is obviously critical to

the viability of the service delivery system and other models we

have funded. However, demonstration programs on their own cannot solve the underlying questions about the sources and nature of

financing for long-term care services.

At the same time, our demonstration experiences do suggest lessons about the use of long-term care dollars. For example, we have

learned that funding sources should cover a variety of services and

a range of medical and social services in order to make consumer

choice a reality.

We have also learned that the ability to leverage multiple funding sources, such as creating interrelationships between housing

and supportive services, best enables older adults and adults with

disabilities to remain in the community.

As we move forward, the Foundation’s program efforts will focus

on assisting family caregivers and strengthening the paid work

force, encouraging communities to design, build, and strengthen

their capacity for providing long-term care services, and promoting

changes in public policy to increase consumer choice and to improve the coordination and financing of supportive services.

The Robert Wood Johnson Foundation recognizes that reforming

the system must be complemented by a national effort to improve

the health of older members of our society. To encourage this work,

the Foundation is supporting numerous efforts, including a program to increase physical activity among mid-level and older

adults, and also to improve clinical services for people with chronic

illness and improve public awareness of issues related to chronic

illness and disability.

We also hope to assist Federal and State policymakers as they

consider a variety of issues through improved information and resources, through technical assistance, and through the development

of policy options. Our work suggests that long-term care reform will

need to incorporate the Federal, State and community perspectives

and foster public-private partnerships in order to find solutions to

the most pressing issues confronting vulnerable older adults and

their caregivers.

The several decades of experience in this field demonstrate the

formidable challenges of improving America’s long-term care system. Our experiences also highlight many opportunities and provide significant lessons for the nation as we embrace this challenge. We will need to develop delivery systems, service capacity,

and financing streams that provide vulnerable and frail elders and

people with disabilities with choices about how to live their lives

and receive the care they need.

We will need to pay particular attention to supportive services

and housing issues, which determine whether those individuals can

maintain the autonomy and independence they desire.

The Foundation will continue to work with providers, public

agencies, consumers, researchers and others to refine the models

we have, test new ideas, and build capacity within our communities

and our nation to meet these challenges. We would be happy to

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connect you with projects that we support across the country that

are grappling with these issues.

I thank you for your attention and look forward to your questions.

The CHAIRMAN. Thank you very much, Dr. Lowe.

Next, Dr. Laura Brackin from Louisiana.

[The prepared statement of Dr. Lowe follows:]

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STATEMENT OF LAURA BRACKIN, DIRECTOR, LOUISIANA

GOVERNOR’S OFFICE OF DISABILITY AFFAIRS, BATON

ROUGE, LA

Ms. BRACKIN. Mr. Chairman, Senator Craig, my name is Laura

Brackin, and I am Executive Director of the Governor’s Office of

Disability Affairs in the State of Louisiana.

I thank you for the opportunity to appear before you today and

provide testimony regarding long-term care reform. My role here

today is to share with you a State’s perspective on long-term care

reform, including the impact of Olmstead and Barthelemy, and the

process of partnership-building and solution-sharing between the

aging and disability communities in Louisiana.

The 1999 U.S. Supreme Court decision, Olmstead v. L.C., had a

dual effect on the State of Louisiana. First, it became the legal

basis for Louisiana’s version of Olmstead, which is Barthelemy v.

Department of Health and Hospitals. Second, it was the central

force that led to a partnership between the aging and disability

communities in the State of Louisiana.

In April of 2000, the Advocacy Center, which is the State’s protection and advocacy system, filed a class action lawsuit which we

refer to as ‘‘Barthelemy.’’ This lawsuit was filed on behalf of persons in nursing homes or at imminent risk of being placed in nursing homes. The main provisions of the lawsuit, which are included

in Attachment A of my written testimony, are designed to increase

the options for community services, ensure that individuals are informed of their options and that professionals are trained regarding

the availability of community services.

The implementation of the provisions in the lawsuit will form

some of the initial action steps of long-term care reform in Louisiana.

During the time that the Barthelemy lawsuit was being negotiated, Olmstead was creating action at both the State department

level and the grassroots level. On July 26, 2000, at the request of

the Office of Civil Rights, the Louisiana Department of Health and

Hospitals held a meeting between DHH officials, consumers, family

members, advocates, and other stakeholders. Unsure as to whether

DHH would proceed with the development of an Olmstead plan,

aging and disability advocates held a meeting of their own in August to discuss common ground. It was there that Olmstead became

the catalyst in forming a partnership between the aging and disability communities.

Aging and disability advocates realized that they had similar

needs, that they were fighting for the same pots of money, and that

they would be a greater force if they were united. They formed a

group called the Louisiana People’s Olmstead Planning Group,

which was called LAPOP, although I must say they hate the name

and have since changed it to LADAP, Louisiana’s Disability and

Aging Partnership.

The intention was to develop a ‘‘people’s plan’’ since they were

unsure as to whether or not the State was going to proceed with

an Olmstead plan. It was co-chaired by a representative of the developmental disabilities community and a representative of the

aging community. Strong efforts were placed on ensuring that the

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members of the adult disability community and the mental health

community were also involved as part of their steering committee.

This was a very strong and positive collaborative effort, because

not only for the first time were the developmental disability community and the aging community working on the same goals, but

all four disability groups were at the same table, being equal decisionmakers in the direction of an Olmstead plan for Louisiana.

In January of 2001, the LAPOP group determined that legislation supporting the development of their ‘‘people’s plan’’ would help

to ensure effective implementation of the plan. Therefore, they

worked collaboratively with legislators, the Department of Health

and Hospitals, the Governor’s Office of Disability Affairs, and numerous disability and aging organizations to develop and seek passage of Senate Bill 855. This bill was signed into law by Governor

Mike Foster and is now Act 1147.

Act 1147 creates the Disability Services and Support Systems

Planning Group, which is led by a consumer task force. It is comprised of numerous aging and disability consumers, family members, advocates, State agencies, and other interested individuals,

and is now the entity responsible for the development of a plan for

long-term care reform in the State of Louisiana.

On a national level, Olmstead, the President’s Executive Order,

the systems change grants, and other Federal directives were some

of the innovative initial steps in establishing Federal and State environments which were conducive to long-term care change.

On a State level, implementation of the provisions of the

Barthelemy lawsuit will function as a change agent for future reform of long-term care in Louisiana.

There are several other factors, though, which will force our longterm care system to change. The rapid growth in the aging population, including a cohort, namely the baby boomers, who may not

accept institutionalization as a prerequisite for receiving long-term

support and services, will create a greater demand for long-term

care services, including greater demands upon State and Federal

budgets and on family members.

Reduction in birth rates, greater mobility of working Americans,

and the increased participation of women in the work force will decrease the capacity for family members to provide care for family

members who are aging or disabled.

Another factor is the new, reinvigorated, and politically potent

coalitions between aging advocates and disability advocates who

have been brought together and fueled by Olmstead.

Cross-fertilization between the fields of disability and aging are

evolving such that advocates for the aging will begin demanding

the same civil rights, community integration, and consumer-directed supports for older adults with disabilities as advocates and

self-advocates have been demanding for younger adults with disabilities.

Our society is rapidly evolving such that consumers, family members, and advocate are no longer buying into the notion of predetermined categories for disability or aging. Instead, they are banding

together and working toward a universal system for all people with

disabilities regardless of age.

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One of the most important mechanisms for long-term care

change will be the development of partnerships such as in the Displaced Services and Support System Planning Group in the State

of Louisiana. Partnerships also need to be formed between State

agencies that provide services, partnerships between State and

Federal Government, public and private partnerships, but most importantly, partnerships between States and consumers, family

members, and advocates. And these partnerships need to include

collaboration on grants, policies and procedures, program development and strategic planning.

We have an ingrained system, and therefore, incentives are needed to change that system. I would like to share with you a couple

of short-term or quick fixes that I believe may help us in moving

toward long-term care reform.

One is that regulations need to be changed so that family members can be reimbursed for care. There needs to be flexibility in the

use of long-term care dollars so that family members can do what

they are able to do for other family members who are aging or disabled, but they can get the support in the way that they need it

most. Costs will be controlled because they are not going to be reimbursed for unnecessary 24-hour care.

States must be allowed to bundle Medicare and Medicaid services

for a definable population across all age groups and use the money

as a research and demonstration waiver to allow more flexibility.

It is anticipated that this will be cost-neutral for Louisiana and

also cost-neutral for the Federal Government.

We must enhance the Federal match rate for home and community-based services similar to what was done with the Family Opportunity Act, by either removing nursing home care as a required

entitlement benefit under Medicaid and making long-term care

services the required benefit so that States have some flexibility in

how and where to deliver long-term care services, or make home

and community-based long-term care services a required benefit

under Medicaid to be on the same level as nursing homes. Another

option that would put them on the same footing would be the passage of MiCASSA.

We must provide Federal dollars to assist poor States with excess

institutional capacity to buy back certificates of need for surplus

nursing home beds. This will produce cost savings in States with

too many nursing home beds and should provide nursing homes

with the resources for them to retool. Bed buybacks and bed-banking could be used to encourage the retooling of nursing homes so

they would move toward more home and community-based care.

We must change Federal laws and regulations to allow for Cash

and Counseling programs.

We must de-link eligibility requirements for home and community-based services from eligibility requirements for institutional

care. I would like to point out that it is easier to get into an institution than it is to receive home and community-based care. Eligibility determination requires that you describe an individual’s deficits as opposed to his strengths and weaknesses. This forces an approach of viewing the negatives as opposed to viewing a broad

array of options. Eligibility is deficit-based; therefore, the family is

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forced to describe the person as being as needy as possible to get

the minimum amount of care.

We must have an enhanced Federal match and short-term Federal program to buy back nursing home beds in States where there

is excess nursing home capacity. This would be a one-time-only option; then, nursing homes would enter into a competitive market.

This would require nursing homes to retool and would create incentives for them to provide other kinds of services and supports.

We currently have a long-term care system that was built on a

model for acute care—namely, the hospital—rather than for chronic

care. We must rationalize our system of long-term care so that

health care is incorporated into the context of everyday life. Normal, everyday life in the community should not have to stop just

because a person needs chronic care and long-term support.

There are a few long-term issues that would need to be addressed in dealing with long-term care reform. Incentives are needed to create equity in States between the public and private sector

for direct-support professionals. This could be achieved by funding

the recommendations as outlined in the reauthorization of the Developmental Disabilities Act.

Another issue that needs to be addressed is that there is currently a work force crisis. Studies show that care from family members is a huge unreimbursed service. This is a double dilemma for

the developmental disabilities population being cared for by aging

family members.

The services that they provide keep individuals out of more costly and restrictive environments. However, as the caregivers are

aging, it takes a toll on them, impacting women more than men.

One way to deal with this is to support family members so that

they may provide care for the family member who is aging or has

a disability. This will not replace the current work force but will

help build a more comprehensive work force that is capable of

meeting growing consumer demands.

Overall, we need a comprehensive long-term care system that addresses issues such as flexibility, supporting rather than replacing

family caregiving, reimbursement rates, workforce capacity, housing, consumer direction, financial incentives for providers to re-tool

in order to meet consumer demand, development of a broad array

of options, informed choices, transportation and recreation.

This new system should be guided by a focus on serving all persons with disabilities, regardless of whether the disability was acquired by birth, accident or injury, or by the aging process.

But most importantly, I would like to leave you with one final

concept. There is a term that is used in the disability community

and that is: ‘‘Nothing about me without me.’’ What that means is

that services and systems should not be developed unless the consumers are meaningfully involved in the development of the services that affect their lives.

Thank you.

[The prepared statement of Ms. Brackin follows:]

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The CHAIRMAN. Thank you, Ms. Brackin, and I thank all the

members of the panel for their very important testimony.

Let me start with a question of a general nature on the Olmstead

decision. It was brought under the Americans with Disabilities Act.

The question that I think Ms. Allen and Ms. Rosenbaum particularly talked about was the coverage of the decision and that there

is some uncertainty about what is covered and what is not, and

there is a question in my opinion as to whether Congress needs to

clarify that uncertainty.

Is the coverage of the requirement of the Supreme Court decision

intended, do you think, to cover disabilities outside of the disabilities that that the Americans with Disabilities Act covers? I am

thinking that you have mental disabilities, you have physical disabilities, and I guess you have disabilities that are just brought on

by old age, which is not specifically diagnosed as being a hip problem or an Alzheimer’s problem or some other type of mental disability.

Does the Olmstead decision cover people who are just old, for instance, who do not have a, ‘‘disability’’ in the more traditional

sense, or is in fact just becoming very old a disability in and of

itself under the terms of this decision? Can I get some discussion

on that?

Ms. ROSENBAUM. Yes, Mr. Chairman. The way the ADA is structured is actually quite notable given your question. It is structured

not to turn on specific conditions or specific groups of people. It defines ‘‘disability’’ in terms of your relative ability to function in relation to how people in your age and class would function. So, for

example, as people age—the ADA definition of ‘‘disability’’ is that

you have a physical or mental impairment which essentially affects

your normal daily functioning, has a major impact on normal functions. Well, of course, as you age, what becomes normal daily functioning changes somewhat, so the presence of a disability in a person who is old is not measured against what that person should do

when the person is 37. In that sense, it does not have an infinite

capacity to classify everybody who is old as a person with a disability, and in fact, a couple of years ago, the Supreme Court made

clear that there are real limits on who is disabled under the ADA.

The CHAIRMAN. So is it fair to say that the Olmstead decision,

in your opinion, would cover any individual who needs care from

the State program?

Ms. ROSENBAUM. It really covers any individual who, because of

any kind of physical or mental impairment—and there is a long

listing, but that is by class of impairments; there are a few exclusions under the Act—but who is unable to perform the normal

tasks of living. It gets us away from the kind of work test that is

in the Social Security Act or a ‘‘specific crippling conditions’’ test.

So it is a very factual evaluation, and one of the big issues in the

‘‘Olmstead cases,’’ as they are known, as access to the kinds of evaluations that assure that you are part of the group, figuring out

what you need and how much resources and services you will then

be eligible to receive.

So in terms of further congressional clarification, I actually think

that the law is broadly enough conceived to allow a fair amount of

policy implementation go forward under it.

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The CHAIRMAN. Ms. Allen?

Ms. ALLEN. Yes, if I could add to that, the ADA—specifically,

Title II—which was at question in this Supreme Court Decision,

applied to people who are considered ‘‘qualified individuals.’’ Within

the context of public programs, what that means is that the individual needs to qualify for or meet the eligibility standards for that

public program—for example, if a person is Medicaid eligible by

reason of either disability as defined within the program or because

of income standards, that person would be covered as a qualified

individual under the ADA. If a person is at a much higher income

standard and does not meet the qualifications to be eligible for the

Medicaid program, that person would not specifically be covered by

this provision of the ADA. I believe that is the case.

The CHAIRMAN. Ms. Allen, in your opinion, do you think this is

something that Congress needs to elaborate on or clarify, or do you

think the decision stands on itself and there is enough information

to the various State providers to be able to operate with some degree of assurance that they are doing the right thing?

Ms. ALLEN. At this point, there are just scores of lawsuits that

have been brought and are being settled. At this point, we have not

analyzed and summarized the outcome of those. Ms. Rosenbaum

perhaps has done more of that than we have. I am uncertain as

to whether Congress needs to act yet, or does it need to instead

better understand the resolution at lower courts and then how that

is playing out.

The CHAIRMAN. And of course, we have to understand that this

is not just for the elderly; children who are disabled would be eligible for the program and would come under the Olmstead requirements as well.

Ms. ALLEN. Absolutely.

Ms. ROSENBAUM. If I could just add, Mr. Chairman, in terms of

what an individual who is covered by the Act could get a court to

order, while the coverage under the Act is very broad, in fact, the

remedies that the ADA allows are relatively narrow.

For example, there has now been a series of decisions, including

one by the Supreme Court, saying that a court could not order a

State Medicaid program to change its plan, to add services that are

not in its plan. You could require a State to spend up to the limits

of its State plan; if it says it has 3,000 waiver slots, as they are

known, and is only funding 1,000 waiver slots, the State would

have to spend up to 3,000. But you could not make a State—at

least, not under current law—you could not make a State add State

plan services that are not already covered under the plan.

You probably could not make a State add a housing program

where there was none, but if a State had a housing program that

had no capacity in it whatsoever for people with disabilities, that

would be a different issue.

So it has to do with how you are administering your program.

The CHAIRMAN. It is a chicken-and-egg situation. There will not

be a lot of other assisted living-type facilities if they know they are

not going to be reimbursed through a State Medicaid program——

Ms. ROSENBAUM. That is right.

The CHAIRMAN [continuing.] but if they know that they are going

to be reimbursed, you are going to see the creation of an entire inVerDate 11-MAY-2000 14:19 Dec 05, 2001 Jkt 000000 PO 00000 Frm 00086 Fmt 6633 Sfmt 6633 76174.TXT saging1 PsN: saging1
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dustry trying to provide services that are outside the traditional institutionalized care.

Ms. Brackin, I take it our State of Louisiana was one of the first

to reach an agreement or a settlement of the suit based on the

Olmstead decision.

Ms. BRACKIN. Yes, sir. Our State was one of the first, and it provides more choice for individuals and ensures that individuals will

be informed about the services. One of the problems right now is

that people are not exposed to what their options are and feel that

nursing home care is the only option that is available to them. So

that is one of the things that will actually change by the

Barthelemy lawsuit.

The CHAIRMAN. Do you mean the information being provided

that there are alternatives?

Ms. BRACKIN. Yes.

The CHAIRMAN. Professor Rosenbaum spoke to the fact that because we have always had an institutional bias in all States—that

that is what you do with disabled people—there are not in fact a

lot of alternatives out there—and I am sure that our State is no

different from the majority of them, where there are not a lot of

alternatives.

How do you think that is going to change, and is it going to

change?

Ms. BRACKIN. One thing that is also included in the Barthelemy

lawsuit is that more options need to be available for individuals,

so what will happen because of this lawsuit is that options will be

created, and people will be informed about what those options are.

The CHAIRMAN. When you say ‘‘options will be created,’’ are you

envisioning State-constructed options, or are you talking about the

ability to have people stay in a family type of setting, or both?

Ms. BRACKIN. Options will be created by both Federal and State

policies and procedures. Right now, the infrastructure does not

exist completely for anybody who is currently in a nursing home to

move into the community and receive the supports and services

that they need. One of the issues that I spoke about is the work

force crisis. If you have an institutional setting, and one individual

is supervising 20, and 20 move out into the community, you need

to build the work force in order to meet that greater demand for

personal care services. So what will happen is that as more and

more people move into the community, we will start building that

infrastructure to meet their needs; more programs will be developed.

Another issue that is going to be a problem that we are going to

need to work on is transportation and recreation. There are so

many issues that will need to be addressed. Some of them will be

long-term, and some of them will be short-term, but we will develop a lot of those programs as people move into the community.

The CHAIRMAN. I note under ‘‘Substance of Reform, Short-Term

Suggestions’’—are those things that we are doing with the settlement agreement in Louisiana, or are these just recommendations

for future consideration?

Ms. BRACKIN. Those are recommendations for future consideration.

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The CHAIRMAN. Because you include some things that I know are

going to be somewhat controversial, and that is not surprising because we are dealing with something that has been operating in

only one fashion for a long period of time, but you are talking about

changing regulations so that family members can be reimbursed for

care.

Ms. BRACKIN. Yes. That is one way to address the work force crisis. Right now, family members are providing a lot of the care

which is alleviating the burden on State and Federal Governments.

We need to compensate family members to some degree for the

care they provide so they can continue to provide that care.

The alternative, if that is not happening, is that some individuals

will be forced to go into 24-hour nursing home care when 24-hour

care is not what they need and would wind up being more costly.

The CHAIRMAN. You also mentioned that you have had some discussion on what is a required benefit and an entitlement, if you

will. Removing nursing home care is a required benefit and entitlement under Medicaid, and making home and community-based

long-term services a required benefit under Medicaid to be on the

same level as nursing homes.

Can you give me some discussion on what your thinking is on

that?

Ms. BRACKIN. Well, I could probably put together a more formal

report at a later date and research some of the policies and procedures so that I do not misquote anything; but the point is that

right now, they are not on the same footing, so it is creating an

institutional bias when money is available for nursing home care,

and it is not available for home and community-based services, so

people are forced to go into that environment in order to receive

services at all because that is where the money is.

The CHAIRMAN. I take it that under our State and probably

under most of the States, if you are a Medicaid-eligible person, you

are entitled to an institutional setting, i.e., nursing home, but you

are not necessarily entitled to a home health care assistance program?

Ms. BRACKIN. Right.

The CHAIRMAN. Thank you.

Senator Craig.

Senator CRAIG. I will ask this question first because of the time

involved; I think, Mr. Chairman, we have a vote planned for

around 2 o’clock.

Dr. Lowe, I understand that in the early 1990’s, with a grant

from your organization, four States—California, Connecticut, Indiana, and New York—initiated programs to create public-private

partnerships to provide for long-term care coverage without having

to spend down the Medicaid eligibility.

Do you have any information on the status of those partnerships?

Dr. LOWE. I do not, sir, but I will be happy to get that information for you.

Senator CRAIG. If you would, I would appreciate it. I think that

that is a potential model that we would want to look at to see how

that is working.

[Information of Dr. Lowe follows:]

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The Robert Wood Johnson Foundation’s Partnership for Long Term Care was designed to explore alternatives for long term care financing by encouraging the blending of public and private insurance. Four States, California, Connecticut, Indiana

and New York, received grants to implement programs that combine long term care

insurance with Medicaid. All four of the program use private insurance to cover the

initial costs of long term care. Consumers who purchase Partnership approved policies become eligible for Medicaid services after their private insurance is exhausted

without spending down all their assets as is required to meet Medicaid eligibility

criteria. All Partnership approved policies must meet quality guidelines established

by the individual States.

To date, the four Partnership states report that a total of 70,027 policies have

been issued with 57,963 policies in force. These data are from the States’ internal

reporting systems. A comprehensive analysis of this program can be found in the

book, Who will Pay for Long Term Care? Insights from the Partnership Programs,

Editor, Nelda McCall, Chicago: Health Administration Press, 2001.

Senator CRAIG. Ms. Allen, your testimony highlights that changing demographics will drive an increased demand for long-term

care services. Are you expecting these demographics to result in demand for different services than are currently available? Does your

analysis look at it in that way?

Ms. ALLEN. We were not specific in terms of the types of services,

but we can expect they would be fairly comparable to what we have

today. The services are actually quite far-ranging. Some of them

are very hands-on, very physical, for people who have severe physical disabilities who might need help just moving about. But for

many people, particularly aging seniors who have perhaps more

cognitive disabilities, it might require more assistance just in managing their lives in terms of prompting them to do certain things

for self-management.

The real issue, though, is simply the volume of additional services that will be needed. There are now about 35 million individuals who are age 65 or older, and by the year 2040, we are projecting that number to more than double, to more than 77 million people. That sheer volume of people alone will dictate that more care

be available.

Senator CRAIG. It is a matter of cost per individual on an average

out in that community of services searching for the service that fits

them. By that very character, I assume you are extrapolating that

the costs will go up dramatically.

Ms. ALLEN. Exactly, just because of the sheer numbers of affected individuals.

Senator CRAIG. Ms. Rosenbaum, beyond the work that you have

done and the studies that are being done at the university, are you

prepared to make specific policy recommendations to Congress or

to us as we look toward reforming the country’s long-term care system based on the analysis that you have done through these complaints?

Ms. ROSENBAUM. We are, Senator Craig, and I do concur with

many of the recommendations made by Ms. Brackin. Within the

Medicaid program itself, which of course, as Ms. Allen pointed out,

is the biggest source of at least the health and health-related financing that is needed for all of this, there are a number of recommendations that would significantly improve the availability of

Medicaid funding to States for these activities, and I think that

probably Congress is going to have to confront head-on. In particular, there are a couple of different medical assistance limits that

have always been in the program. One is the sacred cow that it

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does not pay for room and board except in a skilled nursing facility.

We need somehow to pay for physical adaptive housing at this

point that goes beyond a simple apartment and can deal with all

of these people with physical disabilities.

The other issue is exactly the issue that Ms. Brackin identified,

which is that Medicaid does not do well by people who are trying

to live at home with their own families. Whether it is because the

family members are not paid, whether it is because the eligibility

criteria do not work very well for people who are in their own

homes, you cannot even trigger your coverage—that is a second

problem.

The third problem is how poorly Medicaid works under the current structure for people with mental illness, because in order to

qualify for these home care services, you have to essentially demonstrate your need for institutional care services, and of course,

Medicaid coverage for institutional care services for people with

mental illness is really not very available.

So I think that Congress is looking at some fundamental revisiting.

The final point I would make is that Medicaid runs off the Social

Security definition of ‘‘disability,’’ which is a work definition. That

is so outdated today. If we are serious about being able to retool

the program to support people living in their communities and

working, we need to do more of what you did as part of the Ticket

to Work Act, which is to rethink Medicaid’s availability to people

who are working and playing and living at home, but who need

some extra services and supports. And today, Medicaid cannot really do that.

Senator CRAIG. Do you know of any analyses—I know that we

have some limited working programs that actually go into the

home—you talked about the physical characteristics of the home

and adapting that or changing that to fit the needs of the individual. I was recently visited by a group that blends Federal and private money toward going in and making a home more accessible

and usable by the senior who might otherwise need to be institutionalized or at least in a setting that would accommodate that.

Out of that which you have looked at, does that seem to come forward as a fairly important part of the requirements or the requests

of need?

Ms. ROSENBAUM. It is essential. If you look at the programs that

the Johnson Foundation has funded over the years which build, of

course, really, all on the original On Lok demonstration, which is

the hallmark of Congress’ thinking—if you go back 25 or 30 years,

you could find the model back then—we have never really succeeded in building the elements of On Lok into ongoing policy options or requirements. We keep funding demonstrations or waivers

or add-ons or alternative for subclasses of people.

I think that Ms. Brackin is exactly right that the very nature of

the entitlement to assistance in Medicaid needs to be rethought.

The days of having it simply be a recovery-based nursing home are

behind us.

The other group that I would suggest to this committee is the

Center for Independent Living, which has done pioneering work

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over the years in thinking about what people with disabilities need

to be able to adapt to a community.

Senator CRAIG. Thank you.

Mr. Chairman, I thank you.

The CHAIRMAN. I just have a few other questions.

Ms. Allen, you mentioned in your statement that some have interpreted the Olmstead decision as perhaps going farther than it

actually did. Can you elaborate on that? What are they thinking—

and that may not be correct.

Ms. ALLEN. I did not intend to suggest that it is incorrect. I was

simply trying to portray that many, including the Health Care Financing Administration early on and now, of course, the Centers

for Medicare and Medicaid Services, early interpreted that the

reach of the decision was beyond the specific circumstances of the

Olmstead case because it was an interpretation of the Americans

with Disabilities Act, which has a broader definition.

This is what is helping, I think, to raise the concern for many,

recognizing that we have this larger population, not only of those

directly affected by mental illness or mental disability, but also

aging seniors, and that is perhaps driving the concern about how

to respond to this.

The CHAIRMAN. Thank you.

Dr. Lowe, you had talked about additional information for consumers. It seems like we always have an overabundance of information. I notice there is a whole list of different programs and

things that are available. Is there, for instance, one website that

would be helpful to people who are looking for the various services

that may be available for someone who finds himself or herself in

an Olmstead type of decision—because I take it that most of these

decisions are not going to be made by the person who would benefit

from the service directly as much as they will be by the children

and grandchildren who are perhaps involved in taking care of that

person.

If I had a person in my family, for example, and I wanted to

know what was available, where would I go? Is there any single

good place to start, rather than having a committee hearing like

this?

Dr. LOWE. There are actually literally hundreds of websites out

there that help people navigate the system by identifying sources

of care. Some of the States and communities themselves have developed navigational internet systems. Charlotte, NC has one

called ‘‘Just One Call’’ which connects people to actual services

rather than just the giving them information.

But in terms of just one, I do not think there is just one. I think

the situations that people find themselves in are complicated by

their own individual circumstances, so there is no single site where

every person who is looking for information go.

The CHAIRMAN. Is it something that we can encourage, maybe

through the Centers for Medicare and Medicaid Services, that each

State would develop some kind of a one-stop shopping center for information on this?

Dr. LOWE. I think there are examples of State one-stop shopping

that would be worth looking at. New Jersey has developed the New

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ple with services on the State level, when what they are really

looking for are local services, makes these things very complex. So

there is probably a need for State and local partnerships.

There are plans at the Federal level to develop a 211 information

and referral telephone number. I am not sure where that stands

but I think that that is something we ought to become more informed about.

The CHAIRMAN. Ms. Brackin, what about in Louisiana, if I were

looking to find out what would be available for my father, for instance, is there a place I could go to find out? I think most people,

when they think about an elderly person who is disabled because

of problems associated with aging, instantly think of a nursing

home; and for many, that is clearly the right solution, but for a

large segment of them, it is probably not the correct and best available solution to the problem.

How can we help convey that additional information?

Ms. BRACKIN. There are two provisions of the Barthelemy lawsuit that were designed specifically to address that issue. One is

that a toll-free number will be established that individuals can call

to find out about the long-term care options that are available to

them. The second is that there is a provision that the Department

of Health and Hospitals will develop a training component for professionals that would be most likely to interact with individuals

who would need long-term care services so that they are aware of

the options that are available to individuals.

In addition, because of the Real Choice Systems Change Grants

that came out from CMS recently, the Disability Services and Support Systems Planning Group is looking at a single point of entry

instead of one-stop—now, with the Work Force Investment one-stop

issues, we are trying to get away from the ‘‘one-stop’’ term—but a

single point of entry for all populations is what they are looking at.

They are in the process of developing an individual report that will

go to David Hood, the Secretary of the Department of Health and

Hospitals, and that single point of entry concept will be included

in that report—not that the State needs to move on it very quickly

but only that they want to mention that this is something that is

very important that the Disability Services and Support Systems

Planning Group wants to focus on and move toward in the State

of Louisiana.

The CHAIRMAN. Under the concept of the 1–800 number if it is

to be fully implemented, when you call that number, what is the

concept, and to whom are you likely to speak?

Ms. BRACKIN. I cannot answer that because the settlement was

just finalized not too long ago, but I can find that out.

The CHAIRMAN. I was just wondering if you were writing the recommendation as far as who would be at the other end of that 1–

800 phone call, who would it be—what would your recommendation

be?

Ms. BRACKIN. I have not been involved in it, but I will find out

what that is going to look like.

The CHAIRMAN. I will tell you what I think, and I am not a party

to the lawsuit, but I would want to be able to call a 1–800 number

and say, ‘‘Look, my father is 90 years old, and he is having problems. What are my options?’’ and I would want that person to be

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able to tell me, ‘‘Here are your options, and here is what the State

helps with financially, and here is what the Federal Government

helps with financially.’’ At a minimum, I think that that is what

the person should be able to convey to the caller.

Does anybody else have any ideas about that?

Ms. ALLEN. Yes, Mr. Chairman. As part of the Family Caregiver

Support Act that was passed last year, a very essential component

of that is to help connect family caregivers with community-based

services where they live. The Act was funded at about $125 million

for this year, which some would say there is some question about

how far that will go, but certainly, one of the principles there was

to establish a point of contact that one could call in one’s own community.

Often, these are connected with the area agencies on aging,

which are very pervasive, so to the extent that people know to look

in their local telephone books and contact that agency, that is a

good place to start.

The CHAIRMAN. We have so many programs, and sometimes you

can get lost in the numbers; you do not know where to go. So it

is sometimes very, very confusing.

Well, I think this has been very helpful. I would hope that all

of the States could pay attention to the things that have been discussed at the hearing today and the information that is out there,

because to a certain degree, I think there is a difference or a lack

of understanding as to what Olmstead really stands for, what it requires the States to do, and States are in various modes of trying

to reach agreements and settlements as a result of this decision.

I am very pleased that Louisiana is one of the first to have actually

reached a settlement which outlines a procedure for responding to

the Olmstead decision. I think that everyone can be congratulated

for that.

I think all of this points to a rather obvious problem. The Medicaid program was never intended to be a long-term care program for

seniors in this country. It was a program that was intended to provide medical assistance for poor people. And now, I am sure that

up to 20 percent of people—and more in my State—probably 90

percent-plus of the people in nursing homes in Louisiana, right——

Ms. BRACKIN. That is right.

The CHAIRMAN [continuing.] are covered by Medicaid—at least 90

percent if not more than that, and some of them, it is 100 percent

of the people in nursing home settings being paid for through Medicaid, which requires you to become poor before you become eligible, when the truth in fact is that we ought to be looking at longterm care for everybody in this country. And we are in the process

of trying to come up with some concepts and ideas for the next session to look at some recommendations on long-term care—how do

we provide it; how do we help people have insurance for it, for instance; how do we get younger people to be more concerned about

what their long-term care is going to look like when they become

eligible for it and in fact become in need of that kind of care—because when you are 25 years old, you are not thinking about what

it is going to be like when you are 75 or 85 or older than that in

today’s society.

90

So we are going to be looking at some recommendations to the

relative committees in Congress to address the question of longterm care. But in the meantime, we are sort of stuck with trying

to make a round peg fit into a square hole by using the Medicaid

program to pay for long-term care coverage, although it was never

intended to do that. So we come up against all of these difficulties,

and that is one of the difficulties we have discussed today.

I thank all of you very much for being with us. I think you have

enlightened a lot of people out there about what they can and cannot do and what they need to be doing, and we thank you for that.

With that, the Aging Committee will be adjourned.

[Whereupon, at 2:15 p.m., the committee was adjourned.]

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