Testimony

Before the Special Committee on Aging, U.S. Senate

United States General Accounting Office

GAO

For Release on Delivery

Expected at 1:00 p.m.

Monday, September 24, 2001 LONG-TERM CARE

Implications of Supreme

Court’s Olmstead Decision

Are Still Unfolding

Statement of Kathryn G. Allen

Director, Health Care—Medicaid

 and Private Health Insurance Issues

GAO-01-1167T
Page 1 GAO-01-1167T

Mr. Chairman and Members of the Committee:

I am pleased to be here today as you address challenges in providing for

long-term care, in view of the Supreme Court’s 1999 decision, known as

Olmstead, that addressed issues pertaining to the setting in which a person

with disabilities receives care.1

 Long-term care includes many types of

services that a person with a physical or mental disability may need, and

encompasses a wide array of care settings. Such care can be provided in

institutional settings such as nursing homes or state psychiatric facilities,

or in community settings such as assisted living facilities, adult foster

homes, and people’s own homes. About 80 percent of the estimated 5.2

million elderly individuals who require assistance with daily activities2

 live

at home or in community-based settings, while about 20 percent live in

nursing homes or in other institutions. Many people with disabilities who

live outside of institutions rely on home and community-based services

such as home health care or nursing services, assistance with meals or

medication management, and personal care services. Many people with

disabilities are elderly adults, but children and adults of all ages have

diverse types of disabilities that may require long-term care services.

In Olmstead, the Supreme Court decided that states may be violating title

II of the Americans With Disabilities Act of 1990 (ADA)3

 if they provide

care to people with disabilities in institutional settings when they could be

appropriately served in a home or community-based setting. While the

Olmstead decision involved two women with developmental disabilities

and mental illness who were residents of a psychiatric hospital, it has been

interpreted to extend beyond these specific circumstances. This includes

applicability to people 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 live in the community and are at risk of

institutionalization. As a result, the decision has generated considerable

discussion about its implications for the provision of long-term care

services—not only for people with disabilities who currently need

services, but also for the growing numbers of aging baby boomers who

 1

Olmstead v. L.C., 527 U.S. 581 (1999).

2

Individuals needing long-term care may have difficulty performing some activities of daily

living (ADL) without assistance, such as bathing, dressing, toileting, eating, and moving

from one location to another; or instrumental activities of daily living (IADL) such as

preparing food, doing housekeeping, and handling finances; or both.

3

See 42 U.S.C. §§12131-12165.
Page 2 GAO-01-1167T

will need care in the coming decades. In responding to these current and

future long-term care service needs, much attention has been focused on

Medicaid, the joint federal-state health financing program for certain lowincome individuals, including the elderly and persons with disabilities.

Flexibility built into the Medicaid program allows states to make many of

their own decisions, within broad federal guidelines, about whom and

what long-term care services to cover, and in what settings.

As part of your ongoing series of hearings on long-term care, you asked us

to address the implications of the Olmstead decision in this larger context.

My remarks today, which are based on our current and previous work4

 and

on the research of others, will focus on (1) an overview of the demand for

and financing of long-term care, in view of the Olmstead decision and the

growing numbers of baby boomers, and (2) implications of the decision

for state-administered long-term care programs.

In summary, the extent to which the Olmstead decision will dictate major

shifts in long-term care services from institutional to home and

community-based settings—and for whom—is uncertain. What is more

certain, however, is that responses to the decision will take place in the

larger context of preparing for the tidal wave of aging baby boomers who

will increasingly tax the current capacity of public and private resources.

This aging generation, with the associated expected increase in the

numbers of people with disabilities, could increase the number of disabled

elderly people who will need care to between 2 and 4 times the current

number. While many public programs support people with disabilities,

Medicaid is the dominant public program supporting long-term care

institutional and home and community-based services, accounting for

about 44 percent of the $134 billion spent for these services nationwide in

1999. Historically, Medicaid has financed long-term care primarily in

nursing homes or other institutions. While Medicaid spending for home

and community-based services is growing, these are largely optional

benefits that states may or may not choose to offer, and states vary widely

in the degree to which they cover them as part of their Medicaid programs.

Consequently, the ability of Medicaid-eligible people with disabilities to

access care in home and community-based settings also varies widely from

state to state and even from community to community. Private

resources—which include out-of-pocket spending and private health and

long-term-care insurance—make up the second largest source of long-term

 4

A list of related GAO products is at the end of this statement.
Page 3 GAO-01-1167T

care financing, comprising about 40 percent of total spending. This public

and private spending, however, does not quantify the total costs of longterm care. Families play a major role in supplying services. For example,

an estimated 60 percent of disabled elderly individuals living in

communities rely exclusively on their families and other unpaid sources

for their care.

Implications of the Olmstead decision—in terms of the scope and nature

of states’ obligation to provide home and community-based long-term care

services—are still unfolding. While the Supreme Court ruled that, under

certain circumstances, providing care in institutional settings may violate

the ADA, it also recognized that there are limits to what states can do,

given available resources and the obligation to provide a range of services

for people with disabilities. The ADA does not require states to

“fundamentally alter” their existing programs. The decision thus left many

open questions for states and lower courts to resolve. To date, most states’

responses to Olmstead have focused on preparing plans that lay out goals

and actions for expanding home and community services for people with

disabilities. The Supreme Court had indicated that such plans were a way

for states to demonstrate they were making reasonable progress in

changing their long-term care programs. Because most of these plans are

works in progress, it is too soon to tell how and when they will be

implemented. State programs also may be influenced over time as dozens

of lawsuits and hundreds of formal complaints seeking access to

appropriate services are resolved.

The plaintiffs in the Olmstead case were two women with developmental

disabilities and mental illness who claimed that Georgia was violating title

II of the ADA, which prohibits discrimination against people with

disabilities in the provision of public services. Both women were being

treated as inpatients in a state psychiatric hospital. The women and their

treating physicians agreed that a community-based setting would be

appropriate for their needs. The Supreme Court held that it was

discriminatory for the plaintiffs to remain institutionalized when a

qualified state professional had approved community placement, the

women were not opposed to such a placement, and the state could

Background
Page 4 GAO-01-1167T

reasonably accommodate the placement, taking into account its resources

and the needs of other state residents with mental disabilities.5

The Olmstead decision is an interpretation of public entities’ obligations

under title II of the ADA. As one of several federal civil rights statutes, the

ADA provides broad nondiscrimination protection for individuals with

disabilities in employment, public services, public accommodations,

transportation, and telecommunications. Specifically, title II of the ADA

applies to public services furnished by governmental agencies and

provides in part that “no qualified individual with a disability shall, by

reason of such disability, be excluded from participation in or be denied

the benefits of the services, programs, or activities of a public entity, or be

subjected to discrimination by any such entity.”

6

Two ADA implementing regulations were key in the Supreme Court’s

ruling in Olmstead. The first requires that public entities make “reasonable

modifications” when necessary to avoid discrimination on the basis of

disability, unless the entity can demonstrate that the modification would

“fundamentally alter the nature of the service, program or activity.”

7

 The

second requires public entities to provide services in “the most integrated

setting appropriate to the needs of qualified individuals with disabilities.”

8

That setting could be in the community, such as a person’s home, or in an

institution, depending on the needs of the individual. For example,

professionals might agree that a nursing home is the most integrated

setting appropriate for an institutionalized person’s needs. In Olmstead,

physicians at the state hospital had determined that services in a

community-based setting were appropriate for the plaintiffs. The Supreme

Court recognized, however, that the appropriate setting for services is

 5

527 U.S. 581, 607 (1999). The Supreme Court remanded the case to the United States

District Court for the Northern District of Georgia for further consideration of whether

changes would “fundamentally alter” the nature of the services, programs, or activities of

the state of Georgia. On July 11, 2000, the parties settled. Under the settlement agreement,

the state agreed to provide both plaintiffs with community-based residential placements;

individual service plans; and, in the event of institutionalization, a return to communitybased treatment within 30 days of a determination that a return to residential or

community-based treatment is appropriate.

6

The ADA defines a public entity as including (1) a state or local government or (2) a

department, agency, special purpose district, or other instrumentality of a state, states, or

local government. 42 U.S.C. §12131(1).

7

28 C.F.R. §35.130(b)(7).

8

28 C.F.R. §35.130(d).
Page 5 GAO-01-1167T

determined on a case-by-case basis and that the state must continue to

provide a range of services for people with different types of disabilities.

The ADA has a broad scope in that it applies to individuals of all

disabilities and ages. The definition of disability under the ADA is a

physical or mental impairment that is serious enough to limit a major life

activity, such as caring for oneself, walking, seeing, hearing, speaking,

breathing, working, performing manual tasks, or learning.9 The breadth of

this definition thus covers people with very diverse disabilities and needs

for assistance. For some individuals with disabilities, assistance from

another person is necessary—direct, “hands-on” assistance or supervision

to ensure that everyday activities are performed in a safe, consistent, and

appropriate manner. For others, special equipment or training may enable

them to continue to function independently. Disability may be present

from an early age, as is the case for individuals with mental retardation or

developmental disabilities; occur as the result of a disease or traumatic

injury; or manifest itself as a part of a natural aging process. Moreover, the

assistance needed depends on the type of disability. For example,

individuals with physical disabilities often require significant help with

daily activities of self-care. In contrast, individuals with Alzheimer’s

disease or chronic mental illness may be able to perform everyday tasks

and may need supervision rather than hands-on assistance. To be a

“qualified” individual with a disability under title II of the ADA, the person

must meet the eligibility requirements for receipt of services from a public

entity or for participation in a public program, activity, or service—such as

the income and asset limitations established for eligibility in the Medicaid

program.10

 9

Specifically, the ADA defines “disability” as (1) a physical or mental impairment that

substantially limits one or more of an individual’s major life activities, (2) a record of such

an impairment, or (3) being regarded as having such an impairment. 42 U.S.C. §12102(2).

10States impose specific standards regarding who is sufficiently disabled to qualify for

publicly funded long-term care. Only a subset of the population considered to be disabled

within the meaning of the ADA may be affected by state long-term care programs targeted

to people with extensive service needs.
Page 6 GAO-01-1167T

The breadth of the disabled population to whom Olmstead may eventually

apply is uncertain. Much is unknown about the widely varying population

of people with disabilities, the settings in which they are receiving

services, and the extent to which their conditions would put them at risk

of institutionalization. Demographic data show, however, that the

response to Olmstead will take place in the context of significant increases

in the number of people with disabilities. As the baby boom generation

grows older, they are more likely to be affected by disabling conditions. Of

the many public programs that support people with disabilities, the

federal-state Medicaid program plays the most dominant role for

supporting long-term care needs. Services through this program have been

provided primarily in institutional long-term care settings, but a growing

proportion of Medicaid long-term care expenses in the past decade has

been for home and community-based services. At present, however, there

are wide differences between states in the degree to which home and

community-based services are provided. States also face varying

challenges in supporting community living beyond what can be provided

through long-term care programs, such as ensuring adequate supports for

housing and transportation, and maintaining adequate programs to ensure

quality care is provided in community settings.

The Olmstead decision has been widely interpreted to apply to people with

varying types of disabilities who are either in institutions or at risk of

institutionalization. One reason for the uncertainty about how many may

be affected is that, as the decision recognized, the appropriateness of a

person’s being placed in an institution or receiving home or communitybased services would depend in part on the person’s wishes and the

recommendations of his or her treatment professionals. Another reason is

that information on the number of people with disabilities who are at risk

of institutionalization is difficult to establish.

• Number of institutionalized individuals. On the basis of information from

different sources, we estimate that the total number of people with

disabilities who are being served in different types of institutional settings

is at least 1.8 million. This figure includes about 1.6 million people in

nursing facilities,11 106,000 in institutions for the mentally retarded or

 11We earlier reported that approximately 1.6 million elderly and disabled residents were in

nursing facilities in 1999. Nursing Homes: Complaint Investigation Processes Often

Inadequate to Protect Residents (GAO/HEHS-99-80, Mar. 22, 1999), p. 1.

Breadth of Population

Affected by Olmstead

Is Uncertain but

Likely to Grow, With

Medicaid the

Dominant Payer

Comprehensive

Information on Those

Institutionalized or at Risk

Is Lacking
Page 7 GAO-01-1167T

developmentally disabled,12 and 57,000 in state and county facilities for the

mentally ill.13

• Number at risk of institutionalization. The number of people who are

living in the community but at risk of institutionalization is difficult to

establish. In an earlier study we estimated that, nationwide, 2.3 million

adults of all ages lived in home or community-based settings and required

considerable help from another person to perform two or more self-care

activities.14 More difficult to estimate is the number of disabled children at

risk of institutionalization.15

The demographics associated with the increasing number of aging baby

boomers will likely drive the increased demand for services in a wide

range of long-term care settings. Although a chronic physical or mental

disability may occur at any age, the older an individual becomes, the more

likely a person will develop disabling conditions. For example, less than 4

percent of children under 15 years old have a severe disability, compared

with 58 percent of those 80 years and older. The baby boom generation—

those born between 1946 and 1964—will contribute significantly to the

growth in the number of elderly individuals with disabilities who need

long-term care and to the amount of resources required to pay for it. The

oldest baby boomers, now in their fifties, will turn 65 in 2011. In 2000,

about 13 percent of our nation’s population was composed of individuals

 12David L. Braddock, unpublished data for 2000 from the State of the States Developmental

Disabilities Project, Coleman Institute for Cognitive Disabilities and the Department of

Psychiatry, University of Colorado. In surveys of state programs for people with

developmental disabilities, Braddock identified nearly 35,000 people with developmental

disabilities living in nursing facilities in addition to the 106,000 in state and private

Intermediate Care Facilities for persons with Mental Retardation (ICF/MR) with seven or

more beds.

13Additions and Resident Patients at End of Year, State and County Mental Hospitals by Age

and Diagnosis by State, United States 1998 (Rockville, Md.: SAMHSA, Center for Mental

Health Services, 2000). See also David L. Braddock, Public Financial Support for Disability

at the Close of the 20th Century, Coleman Institute for Cognitive Disabilities and

Department of Psychiatry (Denver, Colo.: University of Colorado, Aug. 1, 2001).

14Since there is no consensus on what constitutes a severe disability, we estimated, using

National Health Interview Survey data, the number of adults who had either a lot of

difficulty with or was unable to perform either three or more ADLs or two ADLs and four

IADLs. See Adults With Severe Disabilities: Federal and State Approaches for Personal

Care and Other Services (GAO/HEHS-99-101, May 14, 1999).

15See Children With Disabilities: Medicaid Can Offer Important Benefits and Services

(GAO/T-HEHS-00-152, July 12, 2000).

Changing Demographics

Will Drive Increased

Demand for Long-Term

Care
Page 8 GAO-01-1167T

aged 65 or older. By 2020, that percentage will increase by nearly one-third

to about 17 percent—one in six Americans—and will represent nearly 20

million more seniors than there are today. By 2040, the number of seniors

aged 85 and older will more than triple to 14 million (see fig. 1). However,

because older people are healthier now than in the past, no consensus

exists on the extent to which the growing elderly population will increase

the number of disabled elderly people needing long-term care. Projections

of the number of disabled elderly individuals who will need care range

between 2 and 4 times the current number.

Figure 1: Estimated Number of Elderly Individuals in 2000, 2020, and 2040

Source: Bureau of the Census, “Projections of the Total Resident Population by 5-Year Age Groups

and Sex With Special Age Categories: Middle Series,” selected years, 2000 to 2040 (Washington,

D.C.: Jan. 2000).

0

10

20

30

40

50

60

70

80 In millions

4.3

6.8

14.3

62.9

47.0

30.5

2000 2020 2040

Aged 85+

Aged 65 to 84

Years
Page 9 GAO-01-1167T

The changing demographics will also likely affect the demand for paid

long-term care services. An estimated 60 percent of the disabled elderly

living in communities now rely exclusively on their families and other

unpaid sources for their care. Because of factors such as the greater

geographic dispersion of families and the large and growing percentage of

women who work outside the home, many baby boomers may have no

option but to rely on paid long-term care providers. A smaller proportion

of this generation in the future may have a spouse or adult children to

provide unpaid care and therefore may have to rely on more formal or

public services.

Medicaid is by far the largest public program supporting long-term care.16

States administer this joint federal-state health financing program for lowincome people within broad federal requirements and with oversight from

the Centers for Medicare and Medicaid Services (CMS),17 the agency that

administers the program at the federal level.18 In 2000, Medicaid long-term

care expenditures represented over one-third of the total $194 billion

spent by Medicaid for all medical services. Although at least 70 different

federal programs provide assistance to individuals with disabilities at

substantial cost, Medicaid is the most significant source of federal funds

 16People with disabilities generally become eligible for Medicaid through one of two routes.

First, individuals become eligible if they meet a state’s income and resource criteria for

institutional care and are determined to require services equivalent to a nursing home level

of care. This is how the elderly most often become eligible for Medicaid. The second route

is through eligibility for the Social Security Administration’s Supplemental Security Income

(SSI) program. SSI is the federally-administered means-tested income assistance program

that provides a financial safety net for disabled, blind, or aged individuals who have low

incomes and limited resources. As of October 2000, 40 states provided Medicaid to all

individuals who were receiving SSI payments. In the remaining states, a disabled

individual’s Medicaid eligibility was not automatic since these states have elected to

continue using the SSI standards that were in effect on January 1, 1972, and are more

restrictive than current SSI eligibility criteria.

17Formerly the Health Care Financing Administration (HCFA), until June 2001. We continue

to refer to HCFA where agency actions were taken under its former name.

18Medicaid costs are shared by the federal government and states, and each state program’s

federal and state funding shares are determined through a statutory matching formula. The

federal share of states’ medical assistance payments ranges from 50 to 83 percent,

depending on a state’s per capita income in relationship to the national average. On

average, the federal share of Medicaid expenditures is 57 percent.

Medicaid Plays a Dominant

Role in Financing LongTerm Care
Page 10 GAO-01-1167T

for providing long-term care.19 Earlier this year, we reported that Medicaid

paid nearly 44 percent of the $134 billion spent nationwide for long-term

care in 1999, including postacute and chronic care in nursing homes and

home and community-based care. Individuals needing care, and their

families, paid for almost 25 percent of these expenditures out-of-pocket.

Medicare and other public programs covered almost 17 percent, and

private insurance and other private sources (including long-term care

insurance as well as services paid by traditional health insurance)

accounted for the remaining 15 percent. (See fig. 2.) These amounts,

however, do not include the many hidden costs of long-term care. For

example, they do not include wages lost when an unpaid family caregiver

takes time off from work to provide assistance.20

 19Federal programs supporting people with disabilities can be categorized generally into

two groups. The first group is programs with disability as a central eligibility criterion,

composed of 30 programs largely providing cash benefits, with estimated expenditures

totaling $110 billion in fiscal year 1999. The second group uses disability as one of many

potential criteria for program participation and consists of 40 programs, including

Medicaid, for which age, income, or both also serve as bases for eligibility. See Adults With

Severe Disabilities: Federal and State Approaches for Personal Care and Other Services

(GAO/HEHS-99-101, May 14, 1999).

20See Long-Term Care: Baby Boom Generation Increases Challenge of Financing Needed

Services (GAO-01-563T, Mar. 27, 2001).
Page 11 GAO-01-1167T

Figure 2: Percentage of Expenditures for Long-Term Care, by Source of Payment,

1999

Note: Includes Medicaid expenditures for home and community-based services, which are considered

as part of “other personal health care” in HCFA’s national health care accounts.

Source: HHS, HCFA, Office of the Actuary, National Health Statistics Group, Personal Health Care

Expenditures, 2001.

Historically, Medicaid long-term care expenditures have financed services

delivered in nursing homes or other institutions, but the proportion of

spending directed to home and community-based care has increased

steadily over the past decade, as shown in figure 3. Federal and state

Medicaid spending on home and community-based services was about $18

billion (27 percent) of the $68 billion spent on long-term care in fiscal year

2000.

Medicaid Funding for

Home and CommunityBased Services Is

Increasing

2.9%

4.6%

10.3%

13.7%

24.6%

43.8%

Other public

Other private

Private insurance

Medicare

Out-of-pocket

Medicaid
Page 12 GAO-01-1167T

Figure 3: Trends in Medicaid Long-Term Care Spending for Institutional and Home

and Community-Based Care, 1990-2000

Source: The MEDSTAT Group, from HCFA 64 Data.

Much of the Medicaid coverage of home and community-based services is

at each state’s discretion. One type of coverage, however, is not optional:

states are required to cover home health services for medically necessary

care (see table 1). A second type of services, called personal care, is

optional. The primary means by which states provide home and

community-based services is through another optional approach: home

and community-based services (HCBS) waivers, which are set forth at

section 1915(c) of the Social Security Act.21 States apply to the federal

government for these waivers, which, if approved, allow states to limit the

availability of services geographically, target specific populations or

conditions, control the number of individuals served, and cap overall

expenditures.22 To receive such a waiver, states must demonstrate that the

cost of the services to be provided under a waiver (plus other state

 21These waivers are codified at 42 U.S.C. §1396n(c).

22Provisions of the Medicaid statute that may be waived include (1) “statewideness,” which

requires that the services be available throughout the state (a waiver allows services to be

provided only in particular geographic locations); (2) comparability, which requires that all

services be available to all eligible individuals (a waiver allows states to limit services to a

specific number of individuals on the basis of certain criteria determined by the state, such

as disease, condition, and age); and (3) the community income and resource rules for the

medically needy (a waiver allows states to use institutional eligibility rules—which are

more generous than community rules—for individuals residing in the community). For

more information on these and other types of home and community services, see Adults

With Severe Disabilities: Federal and State Approaches for Personal Care and Other

Services (GAO/HEHS-99-101, May 14, 1999).

2000

Total spending: $67.7 billion 1990

Total spending: $29.5 billion

$3.9

billion

$18.2

billion

$25.6

billion

$49.5

billion

Community-based

care

Institutional

care
Page 13 GAO-01-1167T

Medicaid services) is no more than what would have been spent on

institutional care (plus any other Medicaid services provided to

institutionalized individuals). States often operate several different

waivers serving different population groups, and they have often limited

the size and scope of the waivers to help target their Medicaid resources

and control spending.

Table 1: Expenditures for Home and Community-Based Services Covered by

Medicaid, by Type, Fiscal Year 2000

Dollars in billions

Type of service

Required or

optional Description

Medicaid

expenditures

Home Health

Care

Required Home health care includes

medically necessary nursing, home

health aides, medical supplies,

medical equipment and appliances

suitable for use in the home.

$2.3

Personal Care

Services

Optional Personal care services include a

range of assistance to enable

people to accomplish tasks they

would normally do for themselves if

they did not have a disability.

Types of assistance that may be

provided may include light

housework, laundry, meal

preparation, transportation, grocery

shopping, using the telephone,

medication management, and

money management.

$3.8

Home and

CommunityBased Services

(HCBS)

Waivers

Optional HCBS provided under what is

called the 1915(c) waiver program

includes a broad range of services

such as case management,

homemaker, home health aide,

personal care, adult day health,

respite care, and, for individuals

with chronic mental illness,

outpatient clinic services.

$12.0

Source: HCFA.

While expenditures for these services have generally grown over time,

states’ use of HCBS waivers to provide services in community settings has

grown at the highest rate. Expenditures for services provided under HCBS

waivers grew at an average annual rate of 28 percent between 1988 and

2000—twice as much as Medicaid’s expenditures for home health services

and three times as much as for personal care services.
Page 14 GAO-01-1167T

Expenditures under the HCBS waivers vary widely with the type of

disability covered. The average cost across all programs in 1999 was about

$15,331 per recipient. For persons with developmental disabilities, the

average cost was twice the average ($30,421); for programs serving the

aged and aged disabled, the average cost was much lower ($5,849). This

variation results from several factors, but primarily from differences in the

type and amount of program services supplied versus services from other

sources such as family members. The average costs for providing waiver

and other home and community-based services is much lower than

average costs for institutionalizing a person. However, the costs of these

community-based services do not include significant other costs that must

be covered when a person lives in his or her home or in a communitybased setting, such as costs for housing, meals, and transportation, as well

as the additional costs and burden for family and other informal

caregivers.

The proportion of Medicaid long-term care spending devoted to home and

community-based services varies widely among states. Some states have

taken advantage of Medicaid HCBS waivers to develop extensive home

and community-based services, while other states have traditionally relied

more heavily on institutional and nursing facility services. This variation is

reflected in differences in the extent of states’ total Medicaid long-term

care spending devoted to home and community-based care (defined to

include the waivers, home health, and personal care services). For

example, in 1999, 9 states devoted 40 percent or more of Medicaid longterm care expenditures to community-based care, whereas 11 states and

the District of Columbia devoted less than 20 percent. (See fig. 4.)

Provision of Home and

Community-Based

Services Varies Widely by

State
Page 15 GAO-01-1167T

Figure 4: Proportion of Medicaid Long-Term Care Spending for Home and

Community-Based Care, by State, 1999

Source: Based on data from the National Conference of State Legislatures.

States also vary in the amount of home and community-based services

they offer specifically through HCBS waivers. According to data compiled

by researchers, an estimated 688,000 disabled persons were being served

under 212 HCBS waivers in 49 states (excluding Arizona) and the District

of Columbia in 1999.23 (See app. I.) These waivers covered several different

types of disabled populations and settings. All but two states operated at

least one waiver covering services for people with mental retardation or

developmental disabilities, and all but the District of Columbia operated at

 23Charlene Harrington and Martin Kitchener, Medicaid 1915(c) Home and Community

Based Waivers: Program Data, 1992-1999, prepared for The Kaiser Commission on

Medicaid and the Uninsured (San Francisco, Calif.: University of California, San Francisco,

Aug. 2001).

California

Oregon

Washington

Idaho

Nevada

Montana

Wyoming

Utah

Arizonaa

Alaska

Alabama

Michigan

Illinois

Ohio

Pennsylvania

New Jersey

Connecticut

Rhode Island

Vermont

New Hampshire

Maine

Massachusetts

Maryland

Washington D.C.

Delaware

New York

West 

Virginia Virginia

North

Carolina

South

Carolina

Georgia

Florida

Kentucky

Tennessee

Mississippi

Wisconsin 

Indiana 

Colorado

North Dakota

South Dakota

Nebraska

Kansas

Oklahoma

Texas

Hawaii

Minnesota

Iowa

Missouri

Arkansas

Louisiana

New Mexico

40 percent or more (9 states)

20 percent to 39 percent (30 states)

Less than 20 percent (11 states and the District of Columbia)

Proportion of Medicaid long-term care spending
Page 16 GAO-01-1167T

least one waiver for the aged disabled. Overall, states had 73 waivers

covering services for people with mental retardation or developmental

disabilities serving nearly 260,000 participants, 65 waivers covering

services for almost 382,000 aged or aged disabled participants, and 27

waivers serving about 25,000 physically disabled individuals.24 Nationwide,

the number of people served by waivers varies substantially across states.

Oregon, for example, served more than 8 times as many people per capita

in its large waiver for the aged and disabled, compared with several other

states that had waivers for the same target population.

In most states, the demand for HCBS waiver services has exceeded what is

available and has resulted in waiting lists.25 Waiting list data, however, are

incomplete and inconsistent. States are not required to keep waiting lists,

and not all do so. Among states that keep waiting lists, criteria for

inclusion on the lists vary. In one 1998-99 telephone survey of 50 states and

the District of Columbia, Medicaid officials in 42 states reported waiting

lists for one or more of their waivers, although they often lacked exact

numbers. Officials in only eight states reported that they considered their

waiver capacity and funding to be adequate and that they did not have

waiting lists for persons eligible for services under those waivers.26

The states face a number of challenges in providing services to support

people with disabilities living in the community, and these challenges

extend beyond what can be provided by the Medicaid program alone. The

additional costs to the states of supporting people with disabilities in the

community are a concern. For example, Medicaid does not pay for housing

or meals for individuals who are receiving long-term care services in their

own homes or in a community setting, such as an adult foster home.

Consequently, a number of state agencies may need to coordinate the

delivery and funding of such costly supports as housing and

 24The remaining waivers served almost 22,000 individuals with AIDS, traumatic brain

injuries, and children with severe medical disabilities.

25Waiting lists can result when states are providing services for the full number of

participants or “slots” authorized by the waiver agreement with CMS. States may apply to

CMS to amend their waivers to expand the number of authorized slots. However, waivers

also allow states to cap overall expenditures, which my contribute to waiting lists.

26Charlene Harrington and others, “Met and Unmet Need for Medicaid Home and

Community Based Services in the States,” University of California, San Francisco, March

2001. This unpublished report has been accepted for publication in a forthcoming issue of

the Journal of Applied Gerontology.

States Face Challenges in

Supporting Community

Living
Page 17 GAO-01-1167T

transportation. States may also find their efforts to move people out of

institutions complicated by the scarcity of caregivers—both paid personal

attendants and unpaid family members and friends—who are needed to

provide the home and community services.

Finally, there are concerns about the difficulty of establishing adequate

programs to ensure that quality care is being provided in the different

types of noninstitutional service settings throughout the community. We

have reported on quality-of-care and consumer protection issues in

assisted living facilities, an increasingly popular long-term care option in

the community. States have the primary responsibility for the oversight of

care furnished in assisted living facilities, and they generally approach this

responsibility through state licensing requirements and routine

compliance inspections. However, the licensing standards, as well as the

frequency and content of the periodic inspections, are not uniform across

the states. In our sample of more that 750 assisted living facilities in four

states, the states cited more than 25 percent of the facilities for five or

more quality-of-care or consumer protection problems during 1996 and

1997. Frequently identified problems included facilities providing

inadequate or insufficient care to residents; having insufficient,

unqualified, and untrained staff; and failing to provide residents

appropriate medications or storing medications improperly. State officials

attributed most of the common problems identified in assisted living

facilities to insufficient staffing and inadequate training, exacerbated by

high staff turnover and low pay for caregiver staff.27

The Supreme Court’s Olmstead decision left open questions about the

extent to which states could be required to restructure their current longterm care programs for people with disabilities to ensure that care is

provided in the most integrated setting appropriate for each person’s

circumstances. Interpretation of the Olmstead decision is an ongoing

process. While the Supreme Court held in Olmstead that

institutionalization of people with disabilities is discrimination under the

ADA under certain circumstances, it also recognized that there are limits

to what states can do, given available resources and the obligation to

provide a range of services for people with disabilities. Most states are

 27Assisted Living: Quality-of-Care and Consumer Protection Issues (GAO/T-HEHS-99-111,

Apr. 26, 1999). See also Assisted Living: Quality-of-Care and Consumer Protection Issues in

Four States (GAO/HEHS-99-27, Apr. 26, 1999).

Full Implications of

Olmstead for State

Programs Not Yet

Known
Page 18 GAO-01-1167T

responding to the decision by developing plans for how they will serve

people with disabilities in less restrictive settings. These plans are works

in progress, however, and it is too soon to tell how and when they may be

implemented. State responses will also be shaped over time by the

resolution of the many pending lawsuits and formal complaints that have

been filed against them and others.

The Supreme Court held that states may be required to serve people with

disabilities in community settings when such placements can be

reasonably accommodated. However, it recognized that states’ obligations

to provide services are not boundless.28 Specifically, the Court emphasized

that while the ADA’s implementing regulations require reasonable

modifications by the state to avoid discrimination against the disabled,

those regulations also allow a state to resist requested modifications if

they would entail a “fundamental alteration” of the state’s existing services

and programs.

The Court provided some guidance for determining whether

accommodations sought by plaintiffs constitute a reasonable modification

or a fundamental alteration of an existing program, which would not be

required under the ADA. The Court directed that such a determination

should include consideration of the resources of the state, the cost of

providing community-based care to the plaintiffs, the range of services the

state provides to others with disabilities, and the state’s obligation to

provide those services equitably.29 The Court suggested that if a state were

to “demonstrate that it had a comprehensive, effectively working plan for

placing qualified persons with mental disabilities in less restrictive

settings, and a waiting list that moved at a reasonable pace not controlled

by the state’s endeavors to keep its institutions fully populated, the

reasonable modification standard would be met.”

30

The single most concrete state response to the Olmstead decision has

been to develop plans that demonstrate how the states propose to serve

people with disabilities in less restrictive settings, as suggested by the

 28527 U.S. 581, 603 (1999).

29527 U.S. 581, 597 (1999).

30527 U.S. 581, 605-606 (1999).

The Supreme Court

Recognized Limitations to

State Obligations

Most States Are Preparing

Olmstead Plans
Page 19 GAO-01-1167T

Supreme Court. HCFA provided early guidance and technical assistance to

states in these efforts. But most of these state plans are still works in

progress, and it is too soon to tell how and when they will be

implemented.

To help states with their Olmstead planning activities, between January

and July 2000 , HCFA issued general guidance to the states in developing

“comprehensive, effectively working plans” to ensure that individuals with

disabilities receive services in the most integrated setting appropriate.31 To

encourage states to design and implement improvements in their

community-based long-term care services, HCFA also announced a set of

competitive grant initiatives, funded at nearly $70 million, to be awarded

by October 1, 2001. (See app. II for details about these competitive grants.)

In addition, HCFA made $50,000 starter grants available to each of the

states and territories, with no financial match required, to assist their

initial planning efforts. As of July 2001, 49 states (every state except

Arizona) had applied for and received these starter grants, which must be

used to obtain consumer input and improve services.32

As of September 2001, an estimated 40 states and the District of Columbia

had task forces or commissions that were addressing Olmstead issues.

According to the National Conference of State Legislatures (NCSL), which

is tracking the states’ efforts, the goal for most of these states was to

complete initial plans by the end of this year or early 2002. Ten states were

not developing Olmstead plans, for a variety of reasons. NCSL reported

that some of the states that were not planning already have relatively

extensive home and community care programs and may believe that such

planning is not necessary. As the result of a 1999 lawsuit settlement, for

example, Oregon had developed a 6-year plan to eliminate the waiting list

 31The guidance for developing Olmstead plans included the following recommendations:

involving individuals with disabilities and their representatives in the planning process,

addressing the need to identify individuals who are eligible for community services,

assessing the appropriateness and capacity (including waiting lists) of available

community-based services, offering individuals with disabilities choices among services,

and taking steps to ensure quality assurance in community services. HHS’ Office for Civil

Rights (OCR) also provides technical assistance to the states on planning issues. For

example, states may choose to submit their draft Olmstead plans to OCR for review and

assistance. According to officials, OCR does not approve or disapprove the plans, but the

office assesses the extent to which the plans address the concerns raised in complaints.

32CMS also funds a contractor to maintain the Olmstead National Technical Assistance

Center. The contractor operates a Web site to facilitate communication between states and

consumers and provides research and summaries on HCBS programs and initiatives.
Page 20 GAO-01-1167T

of more than 5,000 people for its waiver program serving people with

developmental disabilities. Moreover, Oregon was the only state to

dedicate more than half of its 1999 Medicaid long-term care spending to

home and community-based services. Vermont also is not working on an

Olmstead plan because it has implemented a range of activities over the

years that are related to downsizing institutions and moving toward home

and community-based care.33

On the basis of a preliminary review of about 14 draft Olmstead plans,

NCSL reported that the contents are quite variable. A few plans are

relatively extensive and well documented, including determinations of

need, inventories of available services, funding needs, and roadmaps for

what needs to be done. According to NCSL, other plans consist primarily

of lists of recommendations to the governor or state legislature, without

specifying how the recommendations are to be implemented, by which

agencies, or in what time frame.

It is too early to tell how or when the states will implement the steps they

propose in their Olmstead plans. On the basis of the information collected

by NCSL, it appears that few states have passed legislation relating to

Olmstead—for example, appropriating funding to expand community

residential options or authorizing program changes. As of July 2001, NCSL

was able to identify 15 Olmstead-related bills that were considered in eight

states during 2001, of which 4 were enacted. One bill simply provided for

development of the state plan, while others appropriated funding, required

a new home and community-based attendant services program, or

proposed long-term care reforms. Increased state legislative activity is

expected in 2002, as more Olmstead plans are completed.

State responses to Olmstead also will be influenced by the resolution of

the numerous lawsuits and formal complaints that have been filed and are

still pending. Olmstead-related lawsuits, now being considered in almost

half the states, often seek specific Medicaid services to meet the needs of

people with disabilities. Lawsuits on behalf of people with disabilities

seeking Medicaid and other services in community-based settings often

are initiated by advocacy organizations. According to the National

 33According to NCSL, states not developing Olmstead plans were Michigan, Minnesota,

Nebraska, New York, Oregon, Rhode Island, South Dakota, Tennessee, Vermont, and

Virginia.

Resolution of Pending

Lawsuits and Complaints

Will Help Establish

Olmstead’s Reach
Page 21 GAO-01-1167T

Association of Protection and Advocacy Systems (NAPAS), Protection and

Advocacy Organizations report that about 30 relevant cases concerning

access to publicly funded health services whose resolution may relate to

Olmstead are still active.34 Plaintiffs in the cases include residents of state

psychiatric facilities, developmental disabilities centers, and nursing

homes, as well as people living in the community who are at risk of

institutionalization. Their complaints raise such issues as prompt access to

community-based services, the limitations of Medicaid waiver programs,

and the need for assessments to determine the most integrated setting

appropriate to each individual.

It is difficult to predict the overall outcome of these active cases since

each involves highly individual circumstances, including the nature of the

plaintiffs’ concerns and each state’s unique Medicaid program structure

and funding. According to a NAPAS representative, two recent cases in

Hawaii and Louisiana illustrate some of the issues raised by Olmsteadrelated lawsuits and how they were resolved through voluntary

settlements.

• The Hawaii case35 shows how one federal court addressed the state’s

obligation to move people off its waiting lists at a reasonable pace,

applying the Olmstead decision to people with disabilities who were not

institutionalized. The plaintiffs claimed that Hawaii was operating its

waiver program for people with mental retardation and developmental

disabilities in a manner that violated the ADA and Medicaid law. The

plaintiffs were living at home while on a waiting list for community-based

waiver services—the majority of the plaintiffs had been on the waiting list

for over 90 days and some for over 2 years. They could have obtained

services if they had been willing to live in institutions, but they wished to

stay in the community. The court found that Olmstead applied to the case

even though the plaintiffs were not institutionalized. Hawaii argued that

the plaintiffs were on the waiting list because of a lack of funds and that

providing services for more people would cause the state to exceed

funding limits set up in its waiver program. 36 The court rejected the state’s

 34Protection and Advocacy Organizations are part of a national protection and advocacy

system established by federal statutes to provide legal representation and advocacy

services for people with disabilities in every state. These organizations operate through

federal grants.

35Makin v. Hawaii, 114 F. Supp. 2d 1017 (D.HI, 1999).

36Hawaii had 976 federally approved “slots” for its HCBS waiver program for people with

mental retardation in 1998. In 1999, 801 people were on the waiting list.
Page 22 GAO-01-1167T

argument and held that funding shortages did not meet the definition of a

“fundamental alteration.” The court also found that Hawaii did not provide

evidence of a comprehensive plan to keep the waiting list moving at a

reasonable pace, suggested by the Olmstead opinion. In July 2000, the

parties settled the case by agreeing that Hawaii would fund 700 additional

community placements over 3 years and move people from the waiting list

at a reasonable pace.

• The Louisiana case37 was filed in 2000 on behalf of people living in nursing

homes, or at imminent risk of nursing home admission, who were waiting

for services offered through three Medicaid HCBS waivers that provided

personal attendant care, adult day health care, and other services to

elderly and disabled adults. The plaintiffs claimed that the state was failing

to provide services in the most integrated setting as required by the ADA.

They also claimed that the state was not following Medicaid statutory

requirements to provide services with reasonable promptness and to allow

choice among available services.38 As part of a settlement of this case,

Louisiana agreed to make all reasonable efforts to expand its capacity to

provide home and community-based services and to reduce waiting lists in

accordance with specific goals. For example, the state will increase the

number of waiver slots by a minimum of 650 slots by 2002, with additional

increases planned through 2005. The state also agreed to apply to CMS to

add a personal care service option to its Medicaid plan, thereby making

personal care services available to all eligible Medicaid recipients who are

in nursing homes, at imminent risk of nursing home admission, or recently

discharged. In addition, the state agreed to determine the status of persons

currently on waiting lists for waiver services and to take steps to inform

Medicaid beneficiaries and health professionals about the full range of

available service options.

Olmstead issues are also being addressed through a formal complaint

resolution process operated by the Office for Civil Rights (OCR) within

HHS. As part of its responsibility for enforcing the ADA, OCR receives and

helps resolve formal complaints related to the ADA. When OCR receives

 37Barthelemy v. Louisiana Department of Health and Human Services, Civil Action No. 00-

1083 (E.D.LA).

38The Medicaid statute requires that states furnish assistance “with reasonable promptness

to all eligible individuals.” 42 U.S.C. §1396a(8). States with home and community-based

care waiver programs must provide assurances to HHS that individuals who are

determined to be likely to require institutional care be informed of the feasible alternatives

and provision of services “at the choice of such individuals.” 42 U.S.C. § 1392n(c)(2)(C).

See also 42 U.S.C. §1396n(d)(2)(C).
Page 23 GAO-01-1167T

Olmstead-related complaints from individuals and parties, it works

through its regional offices to resolve them by involving the complainants

and the affected state agencies. If a complaint cannot be resolved at the

state and regional OCR level, OCR’s central office may get involved.

Finally, if these steps are not successful, the complaint is referred to the

Department of Justice. As of August 2001, no Olmstead-related cases had

been referred to the Department of Justice.

From 1999 through August 2001, OCR received 423 ADA-related

complaints.39 These complaints generally involved a concern that people

did not receive services in the most integrated setting. OCR reported that,

as of August 2001, 154 complaints had been settled and 269 remained

pending. These complaints had been filed in 36 states and the District of

Columbia, with more than half filed in seven states. A recent analysis of

334 Olmstead-related complaints indicated that 228 complaints (68

percent) were related to people residing in institutions.40

The ongoing resolution of Olmstead-related lawsuits and complaints will

help establish precedent for the types of Medicaid program modifications

states may have to make to their long-term care programs. Meanwhile, it is

difficult to generalize about the potential impact of the many ongoing

cases because each case will be decided on its own facts. The extent of

what federal courts will require states to do to comply with the ADA as

interpreted in Olmstead will become more clear over time as additional

cases are resolved.

In the wake of the Olmstead decision, states may face growing pressures

to expand services for the elderly and other people with disabilities in a

variety of settings that allow for a range of choices. Despite the numerous

activities under way at the state and federal levels to respond to this

decision, the full implications of the Olmstead decision are far from

settled. Ongoing complaints and legal challenges continue to prompt states

to make incremental changes at the same time that they continue to frame

states’ legal obligations for providing services to the disabled. States face

 39OCR officials indicated that they were in the process of updating their database with

respect to Olmstead-related complaints and that the data should be considered preliminary.

40Presentation of Sara Rosenbaum, J.D., and Alexandra Stewart, J.D., School of Public

Health and Health Services, The George Washington University, at the National Academy

for State Health Policy Annual Conference, August 12, 2001, Charlotte, N.C.

Concluding

Observations
Page 24 GAO-01-1167T

challenges in determining who and how many people meet the criteria of

needing and seeking services and also in balancing the resource and

service needs of eligible individuals with the availability of state funds.

This balancing of needs and resources will be an even greater issue in the

coming years as the baby boom generation ages and adds to the demand

for long-term care services. While Medicaid has a prominent role in

supporting the long-term care services provided today, other financing

sources also play an important role in our current system. These include

private resources—including out-of-pocket spending, private insurance,

and family support—as well as many other public programs. Finding ways

to develop and finance additional service capacity that meets needs,

allows choice, and ensures quality care will be a challenge for this

generation, their families, and federal, state, and local governments.

Mr. Chairman, this concludes my prepared statement. I will be happy to

answer any questions you or the other Committee members may have.

For more information regarding this testimony, please contact me at (202)

512-7114 or Katherine Iritani at (206) 287-4820. Bruce D. Greenstein, Behn

Miller, Suzanne C. Rubins, Ellen M. Smith, and Stan Stenersen also made

key contributions to this statement.

Contacts and Staff

Acknowledgments
Page 25 GAO-01-1167T

Number of persons served, by waiver type

State

Number of

waivers

Mentally retarded/

developmentally

disabled Aged/disabled

Physically

disabled Othera

Total

persons

served

State

expenditures

(in millions)

AK 4 589 712 345 0 1,646 $38.3

AL 3 3,994 5,826 335 0 10,155 129.1

AR 3 1,104 8,158 298 0 9,560 46.8

CA 5 34,212 8,551 120 4,015 46,898 482.9

CO 10 6,517 11,481 0 1,929 19,927 209.6

CT 4 4,328 8,978 198 0 13,504 364.0

DC 1 29 0 0 0 29 51.5

DE 3 490 734 0 365 1,589 34.4

FL 8 13,316 16,805 0 6,337 36,458 287.1

GA 4 2,683 14,018 0 293 16,994 119.2

HI 4 948 923 0 66 1,937 34.2

IA 5 4,984 3,994 0 70 9,048 86.6

ID 3 549 1,000 0 0 1,549 17.5

IL 5 6,961 17,396 12,387 1,483 38,227 290.8

IN 4 1,866 2,338 0 131 4,335 84.5

KS 6 5,325 6,701 3,822 894 16,742 239.9

KY 3 1,060 13,339 52 0 14,451 97.3

LA 4 2,885 759 113 0 3,757 78.0

MA 2 11,076 5,132 0 0 16,208 427.7

MD 3 10,021 132 0 205 10,358 156.7

ME 4 1,624 1,395 697 0 3,716 119.5

MI 3 8,748 6,328 0 0 15,076 253.2

MN 5 7,413 7,838 3,625 367 19,243 429.5

MO 5 7,779 20,821 11 80 28,691 232.0

MS 3 348 2,540 127 0 3,015 14.9

MT 2 980 1,514 0 0 2,494 41.7

NC 4 5,016 11,159 0 273 16,448 316.3

ND 3 1,845 347 0 14 2,206 41.1

NE 4 2,394 2,357 0 21 4,772 88.3

NH 3 2,535 1,367 0 90 3,992 117.4

NJ 9 7,027 4,587 290 611 12,515 292.3

NM 4 1,752 1,404 0 212 3,368 119.2

NV 4 867 1,235 131 0 2,233 15.1

NY 7 36,179 19,732 0 964 56,875 1,784.9

OH 4 5,897 26,135 0 0 32,032 316.8

OK 3 2,687 9,042 0 0 11,729 172.9

OR 2 3,583 26,410 0 0 29,993 298.9

PA 8 10,553 2,463 1,948 70 15,034 516.2

RI 4 2,833 2,304 58 0 5,195 109.7

SC 5 4,242 14,361 32 1,390 20,025 151.7

SD 4 1,764 791 52 0 2,607 48.8

TN 3 4,063 511 0 0 4,574 118.4

Appendix I: Medicaid Home and CommunityBased Services Waivers, by State, 1999
Page 26 GAO-01-1167T

Number of persons served, by waiver type

State

Number of

waivers

Mentally retarded/

developmentally

disabled Aged/disabled

Physically

disabled Othera

Total

persons

served

State

expenditures

(in millions)

TX 6 6,227 27,978 100 895 35,200 506.0

UT 5 0 3,422 21 97 3,540 66.0

VA 6 3,650 11,835 235 523 16,243 211.2

VT 5 1,553 1,014 0 208 2,775 67.7

WA 4 5,071 25,718 0 35 30,824 332.2

WI 4 8,884 13,900 0 205 22,989 387.9

WV 2 0 5,284 0 0 5,284 110.3

WY 3 1,110 982 0 0 2,092 45.4

Total 212 259,561 381,751 24,997 21,843 688,152 $10,550.0

a

“Other” includes waivers that serve the conditions other populations, such as children with special

health care needs, persons with AIDS, individuals with mental health needs, and individuals with

traumatic brain injuries and head injuries.

Source: Charlene Harrington and Martin Kitchener, Medicaid 1915(c) Home and Community Based

Waivers: Program Data, 1992–1999, prepared for The Kaiser Commission on Medicaid and the

Uninsured (San Francisco, Calif.: University of California, San Francisco, Aug. 2001).
Page 27 GAO-01-1167T

In January 2001, HCFA announced a set of grant initiatives called “Systems

Change for Community Living.” These grants are intended to encourage

states to design and implement improvements in community long-term

support services. Total funding for these grants is $70 million for fiscal

year 2001. States will have 36 months to expend the funds. States and

other organizations, in partnership with their disabled and elderly

communities, were invited to submit proposals for one or more of these

four distinct grant programs (see table 2). Agency officials reported

receiving 161 separate applications for these grants for more than $240

million. The agency expects all grant awards to be made by October 1,

2001.

Table 2: Overview of “Systems Change for Community Living” Grants

Name of

grant Description of grant

Total grant

funding

available

Maximum

award

Estimated

number of

awards

Nursing

Facility

Transitions

To help states transition

eligible individuals from

nursing facilities to the

community.

$10 million to

$14 million

$1.2 million 16 to 26

CommunityIntegrated

Personal

Assistance

Services

and

Supports

To improve personal

assistance services that are

consumer-directed or offer

maximum individual control.

$5 million to

$8 million

$1.2 million 9 to 12

Real Choice

Systems

Change

To help design and implement

effective and lasting

improvements in community

support systems to enable

children and adults of any age

who have a disability or longterm illness to live and

participate in their

communities.

$41 million to

$43 million

$3.5 million 30 to 40

National

Technical

Assistance

Exchange

for

Community

Living

To provide technical

assistance, training, and

information to states,

consumers, families, and other

agencies and organizations.

$4 million to

$5 million

$4.0 million

to $5.0

million

1

Source: Coordinated Invitation to Apply for “Systems Change Grants for Community Living,”

(Washington, D.C.: HHS, HCFA, May 17, 2001).

Appendix II: HCFA’s “Systems Change for

Community Living” Grant Initiative
Page 28 GAO-01-1167T

Long-Term Care: Baby Boom Generation Increases Challenge of Financing

Needed Services (GAO-01-563T, Mar. 27, 2001).

Mental Health: Community-Based Care Increases for People With Serious

Mental Illness (GAO-01-224, Dec. 19, 2000).

Long-Term Care Insurance: Better Information Critical to Prospective

Purchasers (GAO/T-HEHS-00-196, Sept. 13, 2000).

Children With Disabilities: Medicaid Can Offer Important Benefits and

Services (GAO/T-HEHS-00-152, July 12, 2000).

Adults With Severe Disabilities: Federal and State Approaches for

Personal Care and Other Services (GAO/HEHS-99-101, May 14, 1999).

Assisted Living: Quality-of-Care and Consumer Protection Issues in Four

States (GAO/HEHS-99-27, Apr. 26, 1999).

Nursing Homes: Complaint Investigation Processes Often Inadequate to

Protect Residents (GAO/HEHS-99-80, Mar. 22, 1999).

Long-Term Care: Baby Boom Generation Presents Financing Challenges

(GAO/T-HEHS-98-107, Mar. 9, 1998).

Medicaid: Waiver Program for Developmentally Disabled Is Promising but

Poses Some Risks (GAO/HEHS-96-120, July 22, 1996).

Long-Term Care: Current Issues and Future Directions (GAO/HEHS-95-

109, Apr. 13, 1995).

Medicaid Long-Term Care: Successful State Efforts to Expand Home

Services While Limiting Costs (Aug. 11, 1994).

Health Care Reform: Supplemental and Long-Term Care Insurance

(GAO/T-HRD-94-58, Nov. 9, 1993).

(290083)

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