Adults With Severe Disabilities: Federal and State Approaches for
Personal Care and Other Services (Letter Report, 05/14/1999,
GAO/HEHS-99-101).
According to a national survey done in 1994 and 1995, 2.3 million adults
living in home- or community-based settings require considerable
assistance with basic daily activities, such as bathing and dressing, to
avoid institutionalization. Affording such help was a problem, however.
Disabled adults were more likely than the general population to live in
a family with an income of less than $20,000 and were almost twice as
likely to live below the U.S. poverty threshold. Eighty-four percent of
those aged 18 to 64 were jobless. More than 80 percent of severely
disabled adults had public health insurance, primarily Medicare or
Medicaid or both. At least 70 different federal programs assist
individuals with disabilities. An estimated $79 billion in benefits will
be paid in fiscal year 1999, primarily through Social Security
Disability Insurance and Supplemental Security Income. Other programs
provide a mixture of cash and services. Medicaid's fastest-growing
outlays are for home- and community-based services waivers. The states
are increasingly taking advantage of the flexibility these waivers allow
to design and target programs that meet unique state needs. Personal
care programs in California, Kansas, Maine, and Oregon reflect diverse
approaches and can serve as models for other states to expand service
delivery in noninstitutional settings and emphasize consumer
participation in directing services to meet their own care needs.
--------------------------- Indexing Terms -----------------------------
REPORTNUM: HEHS-99-101
TITLE: Adults With Severe Disabilities: Federal and State
Approaches for Personal Care and Other Services
DATE: 05/14/1999
SUBJECT: Health care programs
Home health care services
Disability benefits
Persons with disabilities
State-administered programs
Disadvantaged persons
Waivers
Health surveys
Aid for the disabled
Long-term care
IDENTIFIER: Oregon
Maine
California
Kansas
Social Security Disability Insurance Program
Supplemental Security Income Program
Medicare Program
Medicaid Program
National Health Interview Survey
VA Aid and Attendance Benefit Program
******************************************************************
** This file contains an ASCII representation of the text of a **
** GAO report. This text was extracted from a PDF file. **
** Delineations within the text indicating chapter titles, **
** headings, and bullets have not been preserved, and in some **
** cases heading text has been incorrectly merged into **
** body text in the adjacent column. Graphic images have **
** not been reproduced, but figure captions are included. **
** Tables are included, but column deliniations have not been **
** preserved. **
** **
** Please see the PDF (Portable Document Format) file, when **
** available, for a complete electronic file of the printed **
** document's contents. **
** **
** A printed copy of this report may be obtained from the GAO **
** Document Distribution Center. For further details, please **
** send an e-mail message to: **
** **
** **
** **
** with the message 'info' in the body. **
******************************************************************
United States General Accounting Office GAO Report
to Congressional Requesters May 1999 ADULTS WITH SEVERE
DISABILITIES Federal and State Approaches for Personal Care and
Other Services GAO/HEHS-99-101 GAO United States General
Accounting Office Washington, D.C. 20548 Health, Education, and
Human Services Division B-280728 May 14, 1999 The Honorable Pete
V. Domenici Chairman Committee on the Budget United States Senate
The Honorable John R. Kasich Chairman Committee on the Budget
House of Representatives Millions of adults of all ages have
severe disabilities; are unable to perform basic daily activities
such as bathing and dressing; and often require substantial
financial, medical, or other supportive services. Financing for
these and other long-term care services comes from both public and
private sources. For example, the federal government provides cash
assistance, health insurance, and other supportive services, many
of which are targeted at individuals with disabilities.
Historically, public funding for such individuals has consisted
primarily of cash benefits or services delivered in nursing homes
or similar institutions. However, the provision of long-term care
has changed, as an increasing number of adults with disabilities
receive services in the community. Medicaid, a joint federal/state
program that provides medical care for certain categories of low-
income Americans, has played a significant role in the movement
toward community-based personal care and support services.
Medicaid gives states flexibility in how they provide personal
care services-for example, through such innovations as allowing
individuals with disabilities to select and direct their own
caregivers. States most frequently approach community-based
services under Medicaid using one of two optional benefits, both
of which give states flexibility in deciding which beneficiaries
will be served and allow a wide range of services to be covered.
Recently, some advocacy groups and consumers with disabilities
have challenged the optional nature of community-based long-term
care with its flexibility to limit both the number and categories
of individuals served. The cost and policy implications of
changing the current provision of community-based care are
considerable and require a broad understanding of the current
framework under which adults with disabilities receive services.
With the goal of obtaining basic information Page 1
GAO/HEHS-99-101 Severely Disabled Adults B-280728 to enhance
understanding of these issues, you asked us to (1) estimate the
number and characteristics of adults with severe disabilities; (2)
quantify the federal assistance available to such individuals; (3)
describe Medicaid coverage of personal care and related services;
and (4) discuss how a sample of selected states have implemented
Medicaid policies that allow consumers to select their own
caregivers, an approach called consumer direction. We used the
National Health Interview Survey (NHIS) to derive estimates of the
number of individuals with severe disabilities who live in the
community, rather than in institutions. We also conducted
interviews with research and advocacy groups on disability,
identified public programs that addressed the needs of adults with
severe disabilities, and visited a sample of states identified as
innovators in the provision of personal care: California, Kansas,
Maine, and Oregon. We conducted our review from June 1998 through
April 1999, in accordance with generally accepted government
auditing standards. Appendix I contains a more detailed discussion
of our scope and methodology. Results in Brief Our analysis of
1994-95 NHIS data showed 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
activities of self-care. For such individuals with severe
disabilities, obtaining personal care on what is often a daily
basis is critical to avoiding institutionalization. However,
without help from family, friends, or public programs, affording
such assistance may be problematic, because individuals with
severe disabilities were usually less well off economically than
the general population. Adults with disabilities were more likely
than the general population to live in a family with an income of
less than $20,000 and were almost twice as likely to live below
the U.S. poverty threshold. Eighty-four percent of adults aged 18
to 64 with severe disabilities were either out of work or did not
participate in the workforce. In addition, adults of all ages with
severe disabilities were more likely to have less than a high
school education. Over 80 percent of the adults with severe
disabilities in our sample reported having public health
insurance, primarily Medicare, Medicaid, or both. At least 70
different federal programs provide assistance to individuals with
disabilities. Having a disability is a central eligibility
criterion for 30 programs that have estimated fiscal year 1999
expenditures totaling $110 billion. The majority of these funds
($79 billion) are used to pay cash benefits, primarily through the
Social Security Disability Insurance and Supplemental Security
Income programs. Other programs provide a Page 2
GAO/HEHS-99-101 Severely Disabled Adults B-280728 mixture of cash
and services to veterans with disabilities ($28 billion) or offer
other individuals educational, training, employment, social, and
other services ($3 billion). For a second, larger group of 40
programs, disability is one of many potential eligibility
criteria. Within these 40 programs, Medicare and Medicaid are the
most significant sources of federal funds that cover nonskilled
personal care services for individuals with disabilities.
Medicare's home health benefit, which cost over $17.7 billion in
1997, has become a significant source of personal care funding and
over time has changed in focus from solely a short-term, acute
care benefit to a longer-term, chronic care benefit. Most Medicaid
personal care and related services are optional benefits that are
provided at the discretion of each state. The fastest growing
expenditures are for Medicaid home- and community-based services
(HCBS) waivers, which grew at an average annual rate of 31 percent
between 1987 and 1998-twice as much as Medicaid home health (a
required benefit) and three times as much as the personal care
services (PCS) optional benefit. States apply to the federal
government for HCBS 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. Nearly all states have HCBS
waivers, and 40 states use them as the primary funding source for
Medicaid community-based care. However, recent court challenges to
the service and expenditure limits imposed by HCBS waivers have
raised questions regarding whether states will be allowed to
continue these practices. These pending cases have raised concerns
in a few states that waiver costs will increase; if so, there may
be additional costs for the federal government as well. The
consumer direction policies of the Medicaid programs in
California, Kansas, Maine, and Oregon reflected the advantages and
complexities of self-direction as well as the competing concerns
among states, caregivers, and consumers. While most states offered
consumers choice regarding the selection and hiring of a
caregiver, consumer direction varied most often in the extent to
which consumers had authority to train their own caregivers and
manage the payroll. Despite differences in models of consumer
direction, all four states confronted similar issues regarding the
quality and availability of consumer-directed services. In
general, states and consumers identified two challenges: (1)
ensuring a qualified pool of personal caregivers for what are
usually low-wage positions that typically attract individuals with
little or no training and (2) balancing states' Page 3
GAO/HEHS-99-101 Severely Disabled Adults B-280728 concerns
regarding consumer safety with consumers' right to direct their
own care. Background The term "disability" can be broadly
applied to mean limitations that are physical, mental, or both and
that hinder performance of everyday activities. Within this broad
characterization, there are considerable differences in severity
and in the need for assistance.1 For some individuals with
disabilities, assistance from another person is necessary-either
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 can
enable continued independent functioning. Disability can be
present from an early age, such as in the case of individuals with
mental retardation/developmental disabilities; occur as the result
of a disease or traumatic injury; or manifest itself as a part of
the natural aging process. Moreover, different forms of disability
can pose different challenges. 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 more than hands-on assistance.
Personal care, a key component of community-based long-term care
services, is one term used to describe "hands-on" or one-on-one
assistance provided to individuals needing help with basic
activities of daily life in a noninstitutional setting.2 Personal
care is nonmedical and involves aiding individuals with
limitations in the ability to perform activities of daily living
(ADL) and instrumental activities of daily living (IADL). ADLs
include bathing, dressing, eating, transferring from a bed to a
chair, using the toilet, and moving around the house, while IADLs
cover preparing meals, shopping, managing money, using the
telephone, and performing heavy or light housework. The number of
self-care tasks for which an individual requires assistance is a
good indicator of severity of need, and the amount and intensity
of long-term care assistance a person needs increase appreciably
with the number of his or her impairments. The increase in need
for assistance is especially dramatic for individuals with
limitations in three or more ADLs. While there are other
definitions of 1In fact, estimates of the number of individuals
with disabilities ranged from 1 million to well over 10 million,
depending upon the definitions used. 2Some people with
disabilities prefer to use the terms "supports" or "services"
rather than "care" and think of themselves as "consumers" rather
than "clients" or "care recipients." We use the term "personal
care" because of its use by and common association with the
Medicaid program. However, it is intended as a broad descriptive
term for hands-on assistance to or supervision of an individual.
Page 4 GAO/HEHS-
99-101 Severely Disabled Adults B-280728 disability, ADL and IADL
limitations can be directly linked to the need for personal care.3
Medicaid and, to some extent, Medicare are the two primary sources
of public funding for personal care. Medicaid, a joint
federal/state health financing program for low-income Americans
who are aged, blind, or disabled, is the principal source of
public funding for long-term care, with 1998 expenditures of $59.1
billion. In 1996, Medicaid accounted for 38 percent of total long-
term care spending. Historically, Medicaid long-term care
expenditures financed services delivered in nursing homes or other
institutions, whereas home- or community-based care was
predominantly provided informally by family, friends, or both, or
paid for with private funds. While most community-based care
continues to be provided on an informal basis, Medicaid has
increased its funding of community-based services. Between 1987
and 1998, community-based long-term care expenditures increased
from 10 percent to 25 percent of Medicaid long-term care spending.
Medicaid offers three benefits that provide personal care: the
home health benefit; the PCS benefit; and HCBS waivers, which
operate under section 1915(c) of the Social Security Act. Within
broad federal guidelines, states determine the amount and duration
of services offered under their Medicaid programs. States may, for
example, place reasonable limits on services or require
authorization to be obtained prior to service delivery. Home
Health Benefit States must offer home health services as a part
of their Medicaid program to all beneficiaries who are entitled to
nursing facility services. Under Medicaid, a physician must order
home health services as part of a care plan that is reviewed
periodically and includes part-time or intermittent nursing
services; home health aide services; and medical supplies,
equipment, and appliances suitable for use in the home. Home
health aide services must be provided by a home health agency and
can include personal care. PCS Benefit States may, at
their option, choose to offer the PCS benefit as part of their
Medicaid program. Medicaid defines the PCS benefit as services
that are (1) authorized for an individual by a physician in
accordance with a plan of 3Examples of other definitions of
disability include (1) measures of physical activities such as
walking, lifting, reaching; (2) serious sensory impairments; (3)
serious symptoms of mental illness; and (4) inability to work.
Page 5 GAO/HEHS-
99-101 Severely Disabled Adults B-280728 treatment;4 (2) provided
by an individual who is qualified to provide such services and who
is not a member of the individual's family;5 and (3) furnished in
a home or, if the state chooses, in another location.6 States may
limit the PCS benefit through two mechanisms: medical necessity
and utilization control. HCBS Waivers HCBS waivers provide
states greater flexibility in program design, permitting the
adoption of a variety of strategies to control the cost and use of
services. Thus, states may "waive" certain provisions of the
Medicaid statute, such as (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 target
services to 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).7 To receive an HCBS waiver, states
must demonstrate that the cost of the services to be provided
under a waiver (plus other state Medicaid services) is no more
than the cost of institutional care (plus any other Medicaid
services provided to institutionalized individuals). Waivers
permit states to cover a wide variety of nonmedical and social
services and supports that allow people to remain in the
community, including personal care, personal call devices,
homemakers' assistance, chore assistance, adult day health care,
and other services that are demonstrated as cost-effective and
necessary to avoid institutionalization. Medicare, a federal
program that provides health insurance to Americans 65 and older
as well as to certain disabled individuals, offers a home health
benefit that can include in-home services provided by an aide. To
be eligible for Medicare home health, a beneficiary must be
confined to the home, be under the care of a physician who
establishes a plan of care, and 4Under Medicaid, states may also
approve "service plans," which are similar to physician-prescribed
treatment plans. 5"Family member" is defined as a legally
responsible relative (42 C.F.R. sec. 440.167(b)). This includes
spouses of recipients and parents of minor recipients, including
any stepparents who are legally responsible for minor children.
Adult children are not included in this definition. 6The PCS
benefit is not available to Medicaid-eligible individuals who are
hospitalized or reside in a nursing facility, an intermediate care
facility for people with mental retardation, or an institution for
mental disease. 7For example, under institutional eligibility
rules, the parents' income is not counted when determining their
child's eligibility for Medicaid. The parents' income is counted
under the community rules. Page 6
GAO/HEHS-99-101 Severely Disabled Adults B-280728 have a need for
at least one of the following: intermittent skilled nursing care,
physical therapy, speech therapy, or continuing occupational
therapy. Finally, the beneficiary must receive services under a
plan of care that is reviewed periodically. A physician can
prescribe a home health aide only if all the coverage conditions
are met. Any home health aide services must consist primarily of
personal care activities; chores, housekeeping, and other services
must be incidental to the personal care services performed and not
add to the time of the visit. Under the PCS benefit and HCBS
waivers, some states have allowed consumers of personal care to
direct their own services, a concept known as consumer direction.
Consumer direction includes a range of potential activities. At a
minimum, consumer direction entails some degree of decision-making
on the part of consumers regarding their service needs, who should
provide their care, and their evaluation of the quality and
appropriateness of the services received. Consumer direction
differs from the traditional, agency-based system of personal care
in which people with disabilities have little control over the
choice of caregivers, staff schedules, and policies regarding what
services will be provided. At its best, consumer direction can
tailor services to meet the expressed needs and personal
preferences of consumers; thus, it involves helping define the
services to be delivered and making important decisions about
caregiving. While Medicaid enabling legislation does not authorize
cash payments to beneficiaries, states can allow consumers to
direct their own care through hiring, training, and supervising
their personal care attendants. States with consumer direction may
also establish processes that permit consumers to assist in
payroll management, tax filings, and other fiscal
responsibilities. Over Two Million We estimate
that approximately 2.3 million adults living in the community
Adults With Severe have severe disabilities and
require considerable help from another person to perform multiple
ADLs or IADLs. There are a variety of methods and Disabilities
Live in the definitions for identifying individuals with severe
disabilities. Our estimate Community is
based on NHIS data and includes adults with both physical and
cognitive impairments who required personal care in a home- or
community-based long-term care setting.8 Adults with severe
disabilities were less likely to work, had less education, and had
less income than the general population. Adults aged 18 to 64 with
severe disabilities were also much more likely to have public
health insurance coverage, primarily through 8We selected NHIS in
part because it allowed individuals to provide an indication of
the amount of assistance they required. Page 7
GAO/HEHS-99-101 Severely Disabled Adults B-280728 Medicare and
Medicaid, than those of similar age in the general population. No
Consensus Definition There is no consensus on what
constitutes a severe disability. Individuals of Severe Disability
Exists differ in the number of functional areas in which they
require assistance (expressed by ADLs or ADLs in combination with
IADLs) and the level of difficulty they have in performing the
activity. Using NHIS, we estimated that the number of individuals
with severe disabilities ranged from 1.4 to 3.3 million, depending
upon the definition of severity used (see fig. 1). For purposes of
demographic analysis, we selected a definition of adults that
focused primarily on individuals' ability to perform ADLs but also
included an IADL component. Specifically, we defined an adult with
severe disabilities as an adult who has either a lot of difficulty
with or is unable to perform either * three or more ADLs or * two
ADLs and four IADLs.9 9Our definition focuses on adults living in
the community; thus, individuals with severe disabilities residing
in nursing homes or other institutions are excluded from this
analysis. Page 8
GAO/HEHS-99-101 Severely Disabled Adults B-280728 Figure 1:
Estimates of Number of Adults With Severe Disabilities, 1994-95
Four or More ADLs, High Difficulty
1.4 Four or More ADLs, Any Difficulty
1.6 Three or More ADLs, High Difficulty
1.9 Three or More ADLs, Any Difficulty 2.3 Two ADLs and Four+
IADLS OR Three or More ADLs, High Difficulty
2.3 Estimate Used for This Report Two ADLs and Four+
IADLS OR Three or More ADLs, Any Difficulty
2.6 Two or More ADLs, High Difficulty
2.9 Two or More ADLs, Any Difficulty
3.3 0 0.5 1 1.5 2
2.5 3 3.5 Millions 18 to 64 65 and
Over Note: We identified two levels of difficulty in performing
ADLs and IADLs: (1) "any difficulty," which means an adult
reported some difficulty, a lot of difficulty, or being unable to
perform a requisite number of activities, and (2) "high
difficulty," which means an adult reported a lot of difficulty or
being unable to perform activities. Source: NHIS 1994-95 data.
Adults With Severe Adults with
severe disabilities were considerably less well off than the rest
Disabilities Had Lower of the general
population in several key areas, as summarized in figure 2.
Employment, Education, Working age
adults (18 to 64) with severe disabilities were far less likely to
and Income work, with 84
percent reporting that they were either out of work or did not
participate in the workforce. Additionally, adults 18 and over
with Page 9
GAO/HEHS-99-101 Severely Disabled Adults B-280728 severe
disabilities were more likely to have less than a high school
education, live in a family with an income of less than $20,000
per year, and live with a relative that is not a spouse.
Furthermore, adults 18 and over with severe disabilities were
almost twice as likely to live below the U.S. poverty threshold
than nondisabled individuals. Figure 2: Selected Characteristics
of Adults With Severe Disabilities Compared With Those of the
General Population, 1994-95 Unemployed/Not in Labor Force (Aged 18
to 64)
84 23 Less Than High School Education
43 19 Family Income Less Than $20,000
42 23 Live With Relative That Is Not a Spouse
33 23 Below U.S. Poverty Threshold 18
10 0 10 20 30 40 50 60 70 80 90 Percentage Adults With Severe
Disabilities General Adult Population Source: NHIS 1994-95 data.
Page 10 GAO/HEHS-99-101
Severely Disabled Adults B-280728 Most Adults With Severe
Most adults with severe disabilities reported receiving public
health Disabilities Qualified for insurance coverage, primarily
Medicare and Medicaid. Of our estimated Public Health Insurance
2.3 million adults with severe disabilities, 1.9 million, or 84
percent, Coverage reported having some form
of public health insurance, as shown in figure 3. Because almost
everyone aged 65 or older is eligible for Medicare, age was a
significant factor in health insurance coverage. While younger
adults with severe disabilities were less likely to have public
health coverage than those 65 and over, they were far more likely
to have public coverage than those of a similar age in the general
population. Because disability is one eligibility criterion for
both programs, an adult aged 18 to 64 with severe disabilities was
7 times as likely to receive Medicaid coverage and over 18 times
as likely to receive Medicare10 than the nondisabled general
population. 10In 1998, 5.2 million individuals below the age of 65
with disabilities qualified for Medicare, accounting for
approximately 13 percent of program beneficiaries. Page 11
GAO/HEHS-99-101 Severely Disabled Adults B-280728 Figure 3: Adults
With Severe Disabilities Covered by Public Health Insurance, 1994-
95 66 All Types of Public Health Insurance
96 84 37 Medicare
92 69 35 Medicaid 20 26 0
10 20 30 40 50 60
70 80 90 100 Percentage 18 to 64 65
and Over Total Notes: Public health insurance includes Medicare,
Medicaid, military, veterans', and Indian Health Services
coverage. Approximately 2 percent reported military health
coverage. Medicare and Medicaid coverage categories are not
mutually exclusive; a person can qualify for both programs at the
same time. Source: NHIS 1994-95 data. Page 12
GAO/HEHS-99-101 Severely Disabled Adults B-280728 Many Federal
We identified two groups of federal programs that provide
assistance to11 Programs Provide individuals with
disabilities-a term that is applied in a variety of ways. The
first group uses various definitions of disability as a central
criterion Assistance to Adults for eligibility and
consists of 30 programs with estimated expenditures With
Disabilities 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 Medicare and Medicaid, for which age, income, or both
also serve as bases for eligibility.12 Medicaid is the most
significant source of federal funds for providing personal care
services to individuals with disabilities. The provision of
personal care services under Medicare is limited to its home
health benefit, the use of which has been growing over the past
decade. $110 Billion in Federal For fiscal year 1999, the
federal government will obligate an estimated Programs Is Targeted
$110 billion across 30 programs and services that specifically
offer benefits Exclusively for Individuals to individuals with
disabilities.13 The three largest programs-Social With
Disabilities Security Disability Insurance,Veterans
Compensation for Service- Connected Disabilities, and Supplemental
Security Income-offer cash benefits to eligible individuals and
account for over 86 percent of this total. One program within the
30, the Department of Veterans Affairs (VA) Aid and Attendance
program, explicitly offers personal care services through a cash
allowance and provides an additional cash allowance to eligible
veterans if their disabilities make it impossible to perform basic
ADLs without the assistance of another person.14 Figure 4 shows
the distribution of the $110 billion by budget function. 11The
eligibility criteria for federal programs are not consistent with
the definition we used to estimate the number of adults with
severe disabilities. For federal programs, disability can be
linked to an individual's ability to work, rather than the need
for assistance with ADLs and IADLs. While these two definitions
are not mutually exclusive, they are not necessarily the same. In
fact, many of these federal programs are likely to serve very
different populations than those represented in our estimate of
2.3 million. For example, one program offers independent living
services to individuals with visual impairments, and another
offers employment training to individuals with physical or mental
impairments that impede employment. 12We have not included
expenditures for these 40 programs because the broader eligibility
criteria did not allow us to determine the amount of expenditures
that could be attributed to individuals with disabilities. 13This
estimate includes 77 percent of the expenditures of the
Supplemental Security Income program, which is the percentage of
individuals with disabilities served by this program. Supplemental
Security Income is an income- and resource-tested cash assistance
program for low-income individuals who are aged, blind, or
disabled. 14For more information on consumer-directed personal
care offered under this program, see Consumer-Directed Personal
Care Programs: Department of Veterans Affairs and Medicaid
Experience (GAO/HEHS-98-50R, Jan. 16, 1998). Page 13
GAO/HEHS-99-101 Severely Disabled Adults B-280728 Figure 4:
Distribution of the Estimated $110 Billion Designated Specifically
for Billions
Education, Training, Employment, Individuals With Disabilities, by
$3 and Social Services Budget
Function, Fiscal Year 1999 $22 Income
Security (Includes Supplemental Security Income and Housing
Assistance) $57 $28
Veterans' Benefits and Services Social Security Disability
Insurance Source: General Services Administration, Catalogue of
Federal Domestic Assistance (Washington, D.C.: GSA, Dec. 1998).
Appendix II summarizes the 30 programs for which disability is a
condition of participation, and appendix III lists the broader
array of 40 programs that include disability as one of many
potential eligibility criteria. Medicare Home Health Has
Although Medicaid is the most significant source of federal funds
for Become a Significant providing personal
care services to people with disabilities, the Medicare Source of
Funds for home health benefit-particularly
the long-term use of a home health Community-Based Care
aide-has become an important source of nonskilled personal care
for individuals with disabilities and the elderly. This benefit,
originally established for beneficiaries recovering from illness
or injury after a hospitalization, has been used by an increasing
number of beneficiaries as a source of custodial care for chronic
conditions.15 This shift toward more long-term care services has
been a major contributor to the 20-percent average annual growth
in Medicare home health costs between 1981 and 15See Medicare Home
Health: Success of Balanced Budget Act Cost Controls Depends on
Effective and Timely Implementation (GAO/T-HEHS-98-41, Oct. 29,
1997). Page 14
GAO/HEHS-99-101 Severely Disabled Adults B-280728 1997. Figure 5
shows the dramatic increases in Medicare home health
expenditures.16 Figure 5: Medicare Home Health Expenditures, 1981-
97 20 Billions of Dollars 18 16 14 12 10 8 6 4 2 0
1981 1982 1983 1984 1985 1986 1987 1988
1989 1990 1991 1992 1993 1994 1995 1996
1997 Source: Health Care Financing Administration (HCFA), Office
of the Actuary. Longer-term use of the home health benefit,
particularly for home health aide services, has increased Medicare
spending. In 1989, the proportion of home health users receiving
more than 30 visits was 24 percent. In 1996, this proportion had
increased to 49 percent, indicating that the program was serving a
larger proportion of longer-term patients. Moreover, 55 percent of
beneficiaries receiving home health care in 1997 had not been
recently hospitalized, another indication that those receiving
care were not in need of short-term acute care (such as following
a hospital stay), but of longer-term care for chronic conditions,
which are often associated with disability. For 1996, over 48
percent of all Medicare visits 16From 1995 through 1997, the rate
of growth of the Medicare home health benefit slowed, and Medicare
home health expenditures declined in 1998. The amount of the
decline is uncertain, however, since these expenditures have not
been finalized. Page 15
GAO/HEHS-99-101 Severely Disabled Adults B-280728 were made by
home health aides and, as shown in table 1, 5 percent of home
health aide users received about 41 percent of those visits. Table
1: Beneficiaries' Use of Medicare Home Health Aides, 1996
Percentage of home Number of visits per user Percentage
of total users health aide visits 1-9
22.2 0.2 10-29
28.9 2.1 30-49
13.0 3.4 50-99
14.6 9.6 100-149
6.7 10.7 150-199
4.7 12.9 200-249
2.8 10.3 250-299
2.0 9.9 300+
5.0 40.8 Total
100.0 100.0 Note: Percentages may not total 100
because of rounding. Source: Medicare Payment Advisory Commission.
Most Medicaid Under Medicaid, states
have three approaches for providing personal care, Personal Care
and two of which may be offered at the
discretion of the state. First, states must offer the Medicaid
home health services benefit (including home Related Services Are
health aides), which may provide unskilled personal care services.
Second, Optional Benefits states may
choose to provide the PCS benefit, which offers unskilled personal
care services as a part of the states' Medicaid benefit package.
Offered by States Third, HCBS waivers,
which were first introduced in 1981, give states the option of
providing personal care and other related services if they choose
to do so. HCBS services operate under markedly different rules
than the home health and PCS benefits, which must be offered to
all eligible individuals. In particular, HCBS waivers allow states
to limit geographic availability, target specific populations or
conditions, limit the number of individuals served, and cap waiver
expenditures. The popularity of HCBS waivers is evidenced by their
growth rate: from 1987 to 1998, expenditures under HCBS waivers
grew at an average annual rate of 31 percent, compared with 16
percent for home health and 10 percent for the PCS benefit.
Appendix IV summarizes the growth of each of the three Medicaid
approaches to personal care and provides information on how states
use them to provide community-based care. Page 16
GAO/HEHS-99-101 Severely Disabled Adults B-280728 Finally, recent
court challenges to service provision limits and to the selective
nature of some personal care waiver programs have raised serious
concerns about the continued viability of HCBS waivers. These
pending cases have raised concerns among a few states that waiver
costs will increase; if so, there may be additional costs for the
federal government as well. Medicaid Home Health Has In
contrast to the very rapid growth in the Medicare home health
benefit Grown Modestly since the late 1980s,
expenditures under Medicaid home health have Compared With
Medicare increased more modestly. A physician must order
Medicaid home health in accordance with a plan of care that is
reviewed periodically and details the use of services required. A
prescribed care plan may or may not include the services of a home
health aide, but the home health benefit must make available
medical services (such as nursing services), supplies, equipment,
and appliances suitable for use in the home. Between 1987 and
1997, expenditures for Medicaid home health grew at an average
annual rate of 17 percent, compared with 26 percent for Medicare
home health. Figure 6 shows annual changes in expenditures for the
two programs during this period. Page 17
GAO/HEHS-99-101 Severely Disabled Adults B-280728 Figure 6:
Comparison of Growth in Medicare and Medicaid Home Health
Expenditures, 1987-97 60 Percentage Change 50 40 30 20 10 0 1987-
88 1988-89 1989-90 1990-91 1991-92
1992-93 1993-94 1994-95 1995-96 1996-97
Medicare Medicaid Source: HCFA. States are permitted to use
medical necessity and utilization control methods to manage the
use of Medicaid home health services. For example, California
requires prior authorization for more than one visit in a 6-month
period and will approve a maximum of 30 visits at a time. Florida
limits visits to 60 per year, except by prior authorization.17
Other states limit the hours of service provided each day; require
preauthorization if the services are not in conjunction with a
recent hospitalization; or impose limits on the type of services
provided, such as nurse, therapy, or home health aide visits.
17While Medicaid services for home health can range from those of
a home health aide to more skilled services (for example,
physical, occupational, or speech therapy or nursing services),
expenditures are not tracked by the type of home health visit
made. Page 18
GAO/HEHS-99-101 Severely Disabled Adults B-280728 Medicaid PCS
Benefit Of the Medicaid approaches offering personal
care, the PCS benefit is Requires Statewide Service offered by
the fewest states; accordingly, it has had the slowest average
Provision but Allows annual growth: 10 percent from 1987
to 1998. About three-fifths of the Service Limits
states and the District of Columbia had elected to use the PCS
benefit under Medicaid as of 1998, as shown in figure 7. Once
elected, the PCS benefit must be provided to all eligible
individuals with a demonstrable need for personal care, a factor
that may prevent additional states from adopting this benefit.
Page 19 GAO/HEHS-99-101 Severely
Disabled Adults B-280728 Figure 7: States Offering the PCS
Benefit, 1998 PCS Benefit (28) No PCS Benefit (23) Note: Arizona
operates a personal care program as part of a separate section
1115 waiver; because HCFA includes these expenditures as part of
its PCS benefit totals, Arizona is identified as a PCS state in
this map. Source: Medicare and Medicaid Guide (Chicago, Ill.:
Commerce Clearing House, Inc.). States offering the PCS benefit
are afforded some flexibility in order to contain costs or target
services to particular populations. For example, states are
allowed to set their own criteria for establishing who needs the
PCS benefit and may use a wide variety of assessment instruments
or other Page 20
GAO/HEHS-99-101 Severely Disabled Adults B-280728 procedures to
determine who receives services. Variations in the use of the PCS
benefit are apparent across states, reflecting these
implementation differences. For example, California relies on the
PCS benefit primarily as a means of providing personal care
services to individuals with long-term care needs, whereas Oregon
targets this benefit toward an acute-care, more medically based
service. Other states establish eligibility for the PCS benefit by
identifying functional impairment. For example, Maine and New
Hampshire limit eligibility to individuals with chronic or
permanent disabilities, while Florida limits the PCS benefit to
children. Table 2 shows PCS benefit expenditures and their
proportion of each state's total Medicaid home and community
expenditures for fiscal year 1998. Page 21
GAO/HEHS-99-101 Severely Disabled Adults B-280728 Table 2: States'
Use of the PCS Benefit, Ranked by Percentage of Total
Percentage of Medicaid Community-Based
community-based FY 1998 PCS benefit Expenditures,
Fiscal Year 1998 State
expenditures expenditures California
59.10 $324,379,099 Arkansas
49.36 63,244,424 Idaho
42.46 15,238,552 New York
41.90 1,655,085,940 Michigan
39.95 207,957,621 Texas
35.33 228,816,135 New Jersey
33.51 169,711,230 Montana
32.41 13,365,579 Missouri
28.84 91,636,182 North Carolina
28.20 135,870,664 Washington
27.79 120,122,810 Massachusetts
22.05 139,105,479 Arizona
19.98 266,642 West Virginia
18.56 27,845,161 Minnesota
18.49 98,637,571 Wisconsin
15.08 65,534,473 Oklahoma
15.03 24,184,928 Alaska
12.11 4,246,146 Maryland
10.39 24,051,519 Nevada
9.53 2,025,840 Oregon
6.77 19,961,594 Nebraska
5.58 5,381,619 Floridaa
3.82 14,136,021 Kansas
3.74 8,213,577 Maine
3.06 3,596,006 District of Columbia
2.73 366,038 Vermonta
2.15 1,527,670 New Hampshire
2.10 2,294,653 South Dakota
1.55 732,931 South Carolinaa
0.81 1,177,397 Utah
0.66 431,427 aThese states do not offer
the PCS benefit to adults but report expenditures because of
services provided to children under the Early and Periodic
Screening, Diagnostic, and Treatment program. Source: HCFA. Page
22 GAO/HEHS-99-101
Severely Disabled Adults B-280728 States also control utilization
of the PCS benefit by requiring prior authorization, establishing
limits on the duration of services, or both. For example, of the
27 states and the District of Columbia, 7 require prior
authorization for personal care services and 15 limit the hours or
units of service provided.18 (App. V summarizes approaches states
take to limit services under the PCS benefit through the use of
assessment tools and limits on services.) States Make Use of
The enactment of HCBS waivers gave states more flexibility in
program Controls and Flexibility design and more control over
expenditures. HCBS waivers allow states to Afforded by HCBS
Waivers target services to specific populations, geographic
areas, or both. HCBS waivers also allow states to set expenditure
caps, limit services to a specific number of individuals, and-
similar to the PCS benefit-impose limits on the number of hours of
services provided. From 1987 to 1998, HCBS waivers grew at an
average annual rate of 31 percent, increasing in popularity and
use among states. In contrast to the PCS benefit, which 23 states
did not offer, HCBS waiver expenditures were reported by almost
every state in 1998, and all but 8 of these states had at least
one waiver that offered personal care services (see fig. 8). Only
two states used the PCS benefit for the majority of their Medicaid
community-based expenditures, while 40 states channeled over half
of their community-based Medicaid expenditures through HCBS
waivers. (App. V summarizes HCBS waivers that offered personal
care.) 18Of the 14 states and the District of Columbia with
service limits, 7 do not allow these limits to be exceeded, while
the remaining 8 allow exceptions with prior authorization. Page 23
GAO/HEHS-99-101 Severely Disabled Adults B-280728 Figure 8:
Medicaid HCBS Waivers With and Without Personal Care Services,
1998 HCBS Waivers That Offered Personal Care (44) No HCBS Waivers
That Offered Personal Care (7) Source: American Public Human
Services Association. Using a database compiled by the American
Public Human Services Association (APHSA), we estimated that 118
of the over 200 HCBS waivers provided personal care to almost
331,000 individuals.19 The estimate of the number of recipients is
likely to be an undercount, because as many as 16 waivers did not
cite the number of enrollees. States had anywhere from 19Personal
care is only 1 of over 25 different types of services offered
under HCBS waivers. Because data on the costs associated
specifically with personal care services within each waiver are
not readily available, information on HCBS waivers and spending
encompasses many related services. Page 24
GAO/HEHS-99-101 Severely Disabled Adults B-280728 one to six HCBS
waivers offering personal care that varied greatly in the number
of clients served and per capita cost, as shown in table 3. For
example, the number of clients served ranged from a high of 35,000
under one waiver to a low of 9 under another. Additionally, one-
half of the waivers identified served fewer than 1,000
individuals, indicating that most HCBS waivers were relatively
small. Waivers that offered personal care were most likely to
provide related services, such as respite services, environmental
modifications, personal emergency response systems, and adult day
health programs. Table 3: Range of Attributes of HCBS Waivers
Offering Personal Care Attribute
Low High Average Services, 1998
Clients served per waiver 9 35,000
3,250 Per capita costs $663 $270,000
$20,769 Waivers per state 1
6 2.68 Source: APHSA. HCBS waivers are also likely
to target a specific population or group of individuals. For
example, over 50 percent of HCBS waivers offering personal care
focused on (1) the elderly, people with physical disabilities, or
both and (2) individuals with developmental disabilities;
together, these two populations accounted for over 80 percent of
consumers for HCBS waivers with personal care. Table 4 summarizes
HCBS waivers with personal care by their target populations and
number of consumers. Page 25
GAO/HEHS-99-101 Severely Disabled Adults B-280728 Table 4:
Selected Characteristics of HCBS Waivers With Personal Care,
Percentage 1998
Number of Percentage Number of
of Target population waivers of
waivers consumers consumers Elderly, people with
disabilities, or botha 30
25.4 174,969 52.8 People with
disabilities 15 12.7
17,631 5.3 People with HIV/AIDSb
12 10.2 13,726 4.1 Elderly
9 7.6 11,617 3.5 People
with developmental disabilities
35 29.7 112,221 33.9 People
with traumatic brain injury
13 11.0 916 0.3 Other
4 3.4 387 0.1 Total
118 100.0 331,467 100.0 aStates
did not identify HCBS waiver populations consistently, so we
created two categories of HCBS waivers for individuals with
disabilities: one that identified only disability and one that
served the elderly, people with disabilities, or both. bHuman
immunodeficiency virus/acquired immunodeficiency syndrome. Source:
APHSA. State Efforts to Target Recent litigation
in federal courts has raised the possibility that the use of
Services Have Been functional assessments in
conjunction with HCBS waivers as a basis for Challenged Legally
denying services to reduce or constrain costs may no longer be
legally permissible in some circumstances under the Americans With
Disabilities Act of 1990 (ADA).20 These cases raise questions
about whether federal matching funds would be made available to
meet added costs resulting from increased services that are
outside a state's Medicaid plan. The ADA prohibits the exclusion
of an individual with a disability from participating in public
programs or receiving public benefits by reason of the person's
disability. Department of Justice regulations implementing this
provision require that "a public entity shall administer services,
programs, and activities in the most integrated setting
appropriate to the needs of qualified individuals with
disabilities."21 Justice has recently reiterated that the "most
integrated setting" standard applies to states, 2042 U.S.C. 12131-
12134. Sec. 12132 of the act states 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." 21See 28 C.F.R.
35.130(d). Page 26
GAO/HEHS-99-101 Severely Disabled Adults B-280728 including state
Medicaid programs. The court cases reflect the application of this
provision to specific state programs for individuals with
disabilities. Courts in both Georgia and Pennsylvania have applied
Justice regulations and found that institutional placement may
violate the ADA if the placement does not constitute the most
integrated setting appropriate to the needs of the individual.
While only binding in the circuits involved, the court decisions
have potentially broader implications for all states and their
ability to place limits on the number of people that participate
in waiver programs. On July 29, 1998, HCFA sent a letter to state
Medicaid directors informing them of the following three Medicaid
cases relating to the ADA and the most integrated setting
standard. In L.C. By Zimring & E.W. v. Olmstead,22 patients in a
state psychiatric hospital in Georgia filed suit challenging their
placement in an institutional setting rather than in a community-
based treatment program. The circuit court found that the
placement in an institutional setting appeared to violate the ADA
because it constituted a segregated environment, and that
community placement could be required as a "reasonable
accommodation" to the needs of the individuals. While the court
emphasized that the state cannot justify the denial of community
placement because of a lack of funding, it also acknowledged that
the state need not provide these services if doing so would
fundamentally alter the state's program.23 This case was remanded
to the lower court for a determination of whether a fundamental
alteration of the state program would occur as a result of the
community placements.24 On a separate issue, this case was argued
before the Supreme Court on April 21, 1999. The Court limited its
review to the issue of whether the ADA compels the state to
provide treatment for mentally disabled people in a community
placement when appropriate treatment can also be provided to them
in a state institution. 22L.C. By Zimring & E.W. v. Olmstead, 138
F.3d 893 (11th cir.), rehearing and suggestion for rehearing en
banc denied, 149 F. 3d 1197 (11th cir.), cert. granted, 119 S.Ct.
617, order amended, 119 S.Ct. 633 (1998). 23See 28 C.F.R.
35.130(b)(7). "A public entity shall make reasonable modifications
. . . unless the public entity can demonstrate that making the
modifications would fundamentally alter the nature of the service,
program or activity." 24In its ruling, the circuit court put
forward some issues the lower court should consider in determining
if the state is meeting its burden of establishing that a
fundamental alteration of the program would occur if community-
based treatment was provided. One issue, among others, is whether
the additional expenditures needed to treat the plaintiffs in the
community would be unreasonable given the demands on the state
mental health budget. Page 27
GAO/HEHS-99-101 Severely Disabled Adults B-280728 In Helen L. v.
DiDario,25 a Medicaid nursing home resident alleged that the
Pennsylvania Department of Public Welfare violated the ADA by
requiring her to receive services in a nursing home rather than in
her own home through a state-funded personal care program for
which she qualified. The court held that the state's failure to
provide services in the "most integrated setting" appropriate to
the individual's needs violated the ADA. Additionally, the court
found that the provision of personal care to the plaintiff would
not fundamentally alter any state program because the services
were already within the scope of an existing program. In Easely v.
Snider,26 individuals with disabilities in Pennsylvania filed a
lawsuit, through their representatives, challenging a requirement
that they be mentally alert in order to participate in the state's
personal care program. The court determined that given the
essential goal of the program to foster independence for
individuals limited by only physical disabilities, including
individuals incapable of controlling their own legal and financial
affairs in the program would constitute a fundamental alteration
of the program. Therefore, the mental alertness requirement was
found to be valid and not to violate the ADA. Of these three
cases, only the last appears to uphold states' authority to limit
the availability of Medicaid-funded services. In our interviews,
state officials from both California and Maine expressed concern
about the implications of these cases, as well as about Justice's
"most integrated setting" standard. State officials' concerns
center on states' ability to limit participation in their waiver
programs. Maine officials noted that it is crucial that the state
have the authority to define eligibility for services and to
implement programs consistently with financial budgets, especially
given the large number of individuals who have ADL limitations.
State Approaches to States have introduced consumer direction
into their personal care Consumer Direction programs as a
means of ensuring that these services are tailored to the
expressed needs and personal preferences of individual consumers.
Reflect Similar Goals Putting the consumer in the "driver's
seat" is challenging for both and Challenges individuals
with disabilities and states. Officials we interviewed compared
the skills required for consumer direction to those needed to run
a small business. Overall, 31 states appear to offer some degree
of consumer- directed personal care. The four states in our
sample-California, Kansas, 25Helen L. v. DiDario, 46 F.3d 325 (3rd
cir.), cert. denied, 516 U.S. 813 (1995). 26Easley v. Snider, 36
F.3d 297 (3rd cir.), rehearing and rehearing en banc denied, 36
F.3d 297, 306 (3rd cir. 1994). Page 28
GAO/HEHS-99-101 Severely Disabled Adults B-280728 Maine, and
Oregon-have extensive interest in or experience with consumer-
directed personal care. Despite differences in their consumer-
direction models, all four states have confronted similar issues
surrounding the availability and quality of consumer-directed
services: (1) ensuring a qualified pool of personal caregivers for
what are typically relatively low-wage positions that often
attract individuals with little or no training and (2) balancing
state concerns regarding consumer safety with the consumers' right
to self-direct their own care. Consumer Direction Can
Consumer direction entails some degree of decision-making on the
part of Be Analogous to Operating consumers about the specific
services they need and want and about a Small Business
whether individual caregivers are appropriate for the job and
capable of delivering those services satisfactorily. Thus, at a
minimum, consumer direction means that the consumer defines the
services to be delivered and makes employment decisions about
caregivers. In contrast, under the traditional system of personal
care delivered by a home health or other agency, people with
disabilities are typically constrained by the agency's choice of
caregivers, the schedules of these staff, and agency policies
limiting available services. Consumers and state officials both
told us that self-direction is analogous to operating a small
business, in that consumers may have to select, hire, train, and
manage their own caregivers. (See fig. 9.) Page 29
GAO/HEHS-99-101 Severely Disabled Adults B-280728 Figure 9: Self-
Direction Can Be Analogous to Operating a Small Business
Select and Hire Personal Caregivers * Prepare job descriptions for
the services required. * Decide how to advertise for and recruit
job applicants, including through word of mouth, churches,
colleges, newspapers, and bulletin boards. * Screen job applicants
either by phone or in person, checking references and interviewing
applicants that appear qualified. Train and Manage Personal
Caregivers * Provide necessary training and management for
personal caregivers to assist with self-care and daily living
tasks. * Plan and coordinate schedules of possible multiple
caregivers to ensure needed coverage. * Monitor absences and
tardiness; collect, approve, and submit time sheets to state or
local authorities for payment; in some cases, oversee deduction
and withholding of payroll and income taxes; and ensure paychecks
are provided. * Develop contingency plans to use when the personal
caregivers are ill, have a personal emergency, or will be absent
for other reasons. * Evaluate job performance, including
responsiveness to consumer direction. * Discharge the caregivers
if performance is not acceptable. Depending in part on the nature
and degree of the disability, the consumer may have to retain the
services of multiple personal caregivers to provide sufficient
hours of care to meet ongoing needs as well as to respond to
emergencies. For example, a consumer may need assistance in both
the morning and evening, a situation that would probably result in
the need for more than one caregiver. In one case, we were told
that a person with quadriplegia required the services of 12
different personal caregivers over the course of a week. An
employed individual with disabilities with whom we met told us
that he has five different caregivers. In Maine, 479 consumers
collectively employ over 2,000 personal caregivers. Over Half the
States We identified 31 states, shown in figure 10,
that offered consumer-directed Include Some Consumer
personal care, primarily under Medicaid. A review of the
literature shows Direction for Personal that states
have different approaches to consumer direction. For example, Care
Services consumer direction in one state may
mean that a consumer participates in preparing a service plan and
can assist in recruitment. In other states and programs, consumers
may also screen caregivers, negotiate compensation, Page 30
GAO/HEHS-99-101 Severely Disabled Adults B-280728 and train
caregivers.27 To date, little systematic evaluation of the
effectiveness of and costs associated with consumer-directed
personal care has taken place; a demonstration is under way,
however, that should provide insights on this approach to
community-based personal care services. The Robert Wood Johnson
Foundation, in cooperation with the Department of Health and Human
Services (HHS), is sponsoring a four-state demonstration and
evaluation of the cost-effectiveness and appeal of a consumer-
directed approach to personal care services in Medicaid. Appendix
VI summarizes the implementation progress of this demonstration in
Arkansas, Florida, New Jersey, and New York. 27See Susan A.
Flanagan and Pamela S. Green, Consumer-Directed Personal
Assistance Services: Key Operational Issues for State CD-PAS
Programs Using Intermediary Service Organizations (Washington,
D.C.: Department of Health and Human Services, Oct. 24, 1997),
app. V-1, exhibit D, pp. 8-12. Page 31
GAO/HEHS-99-101 Severely Disabled Adults B-280728 Figure 10:
Consumer-Directed Personal Care in the States Washington, D.C.
Consumer-Directed Personal Care Identified (31) No Consumer-
Directed Personal Care Identified (20) States in Our Sample
The four states that we visited offer several different approaches
to Approach Consumer consumer direction
that vary in the consumers targeted and the extent to Direction
Differently which consumers have a choice about
self-direction. In addition, these states offered different
supportive services to help consumers manage their care and
oversee their caregivers, as well as different levels of consumer
participation in the payroll process. California
Under California's county-based system, 96 percent of personal
care (and related services) is self-directed, with consumers
having various levels of access to supportive services. State
officials told us, however, that regulations require that all
counties evaluate consumers regarding their Page 32
GAO/HEHS-99-101 Severely Disabled Adults B-280728 ability to self-
direct and, if counties determine consumers are incapable, they
are referred for special assistance. Of California's 58 counties,
16 offer service delivery models other than self-direction that
are based upon county assessments of consumers' needs. In these 16
counties, consumers may also select providers from either the
contracting agency or the counties' contracted providers. Twenty-
three counties offer supported individual provider services, which
use state funds to provide additional administrative and support
services for consumers using independent providers. Supported
individual provider services enhance service delivery through
recruitment, provider list development and maintenance,
orientation classes, supervision assistance, and consumer-to-
independent-provider matching services. In addition, six counties
have opted to form public authorities,28 which are enhanced
independent provider models, and provide additional client
assistance and increased compensation for providers.29 In other
counties, few such services are available. Kansas The degree of
self-direction in Kansas ranges from a low of 10 percent of people
with developmental disabilities to a high of 70 percent of those
with physical disabilities. The frail elderly fall in between,
with 30 percent self-directing their care. Consumers choosing
self-direction manage all aspects of their care except paying
personal caregivers, which is generally the responsibility of
community organizations that serve as payroll agents. Consumers
are given lists of payroll agents from which they may choose.
Consumers may consult with Centers for Independence for help with
determining how comfortable they are with living independently in
the community and with self-direction. Maine Maine gives
consumers an initial choice regarding self-direction. Consumers
choosing to self-direct must then decide between two models. Under
one model, all consumers must agree to participate in the most
extensive consumer-directed program we reviewed, which requires
clients to be responsible for training and developing job
descriptions for their caregivers as well as for performing actual
payroll management functions. These consumers receive a voucher
check twice a month from the state based on time sheets that they
submitted.30 Personal caregivers are hired by the consumers and
trained on the job by the consumers to assist with 28Public
authorities are relatively new; the San Francisco Public Authority
first met in Oct. 1995, and Los Angeles passed its ordinance in
Oct. 1997. 29In California, counties exercise control over many
aspects of personal care. Not only do they administer the personal
care program, they are also responsible for 17.5 percent of costs
and decide what supportive services will be available to
consumers. 30A voucher check is a two-party check that the
consumer signs over to the caregiver. Page 33
GAO/HEHS-99-101 Severely Disabled Adults B-280728 daily
activities. Under the second model, consumers may choose between
more limited self-direction and agency provision of service.
Oregon In Oregon, consumer-directed providers, over whom
clients have ultimate hiring and firing authority, provide over 91
percent of in-home services. These providers are paid directly by
a state agency, and, thus, consumers have minimal involvement in
the payroll process. However, consumers of Medicaid in-home care
do verify that the authorized hours of work were performed by
signing workers' time sheets. In Oregon, case managers play a
significant role in ensuring a successful community-based
placement. Consumers work with case managers to obtain the set of
services that best meets their functional needs. Oregon reports a
staffing standard of one case manager for each 69 in-home clients-
approximately one-half of the staffing standard for nursing
facility clients. Case managers can also arrange for in-home
agency providers to assist in case of an emergency. Finally,
Oregon has a "Client Employed Provider Guide for Employees" that
helps clients select, hire, and direct caregivers. The four
states' approaches are summarized in table 5. Page 34
GAO/HEHS-99-101 Severely Disabled Adults B-280728 Table 5:
Variation in Consumer Direction of Personal Care in Four
Consumer Supportive Payroll States
Populations direction services
done by State served
available availablea consumer California
People with Yes, in all 68 Yes, in at least
Less than 1 physical counties; 16 23
countiesb percent disabilities and the counties have frail
elderly additional service delivery modes. Kansas
People with Optional Yes
No physical disabilities and developmental disabilities and the
frail elderly Maine People with
Mandatory Yes, but limited Yes, under physical
under one under one one model disabilities
and the model; optional model frail elderly under
other model Oregon People with
Optional Yes No physical disabilities
and developmental disabilities, the frail elderly, and people with
mental illness aSupportive services include assistance in
recruiting and hiring, training, and day-to-day management of
caregivers. bCalifornia services are decentralized to the county
level and thus vary in the degree of available supportive
services. States Recognize Multiple Despite
differences in their models of consumer direction, the four states
Factors Influencing the we visited share concerns
about ensuring the quality of care and Quality of Personal Care
safeguarding individuals with disabilities. There is a general
consensus among state officials, consumers, and advocates that
working conditions-including low wage levels and lack of fringe
benefits-often make it very difficult to recruit and retain
qualified caregivers.31 Despite these states' commitment to
transfer authority over key aspects of personal care to the
consumer, there is less consensus among these same groups on
whether and how other quality control measures, such as background
checks and service monitoring, should be implemented. Each
31Additionally, state officials, consumers, and advocates reported
that it is often difficult to arrange for backup when caregivers
do not show up for work. Page 35
GAO/HEHS-99-101 Severely Disabled Adults B-280728 state recognizes
the special challenges posed by monitoring services delivered in a
home-based setting and by serving a population that includes
consumers who have mental impairments. Furthermore, little
consensus existed among state officials, consumers, and advocates
regarding the degree to which government should actively protect
consumers with disabilities. Compensation of Caregivers
Among the concerns most often raised by state officials,
consumers, and Has Implications for Quality of advocates in
three of the four states we visited are the low wages and Care
limited fringe benefits available to caregivers and the
implications of these factors for the quality of care consumers
receive. Any decision about caregiver compensation inevitably must
be made in a context of funding limitations. The quantity of
services available is related in large part to the cost of those
services-and labor is by far the largest component of the cost of
personal care. Three of the four states told us that they were
uncomfortable with caregiver pay levels, indicating that low wages
could reduce the quality and consistency of care. Only in Kansas
did there seem to be general agreement that personal caregiver
wage rates were adequate. At the time of our visits, the hourly
wages for personal care when provided under consumer-directed
(nonagency) arrangements were as follows: * California paid $5.75,
* Kansas paid varying wages, * Maine paid $6.25, and * Oregon paid
$6.50 to $6.72.32 In California, counties have the option of
increasing the personal caregiver's hourly wage using local
revenues, without any state contribution to the increase. Only San
Francisco has augmented the wage level-to $7. Several other
counties are currently considering increases. In addition,
California has chosen to use state revenues to pay relatives for
providing personal care to people who are otherwise eligible for
Medicaid reimbursement.33 One study, which found positive outcomes
for consumers self-directing their caregivers, estimated that over
40 percent of consumer-directed personal care providers in
California are family 32Oregon has a tiered payment system
reflective of clients' care needs. At the time of our visit,
Oregon rates were $6.50 per hour for minimal assistance with ADL
and IADL care needs and $6.72 per hour for full assistance with
ADL care. As of Feb. 1, 1999, Oregon increased its rates to $7.80
and $8.02, respectively. 33HCFA generally prohibits Medicaid
payments to spouses or parents of beneficiaries who provide care.
Page 36 GAO/HEHS-
99-101 Severely Disabled Adults B-280728 members.34 Family members
are more likely to undertake such a responsibility, in part, for
altruistic reasons, and thus the low compensation may be more
appropriately viewed as a recognition of this fact rather than as
an actual salary. In Kansas, under the HCBS waiver for people with
physical disabilities, caregivers are paid between $8.25 and
$13.25 per hour. The specific amount is determined by the consumer
and his or her independent living counselor and reflects in part
the severity of the consumer's disability. These amounts are
essentially ceilings; caregivers are typically paid at lower
levels. For example, for personal care arranged through the Topeka
Independent Living Center, wages range from $7 to $10. Part of the
reason for the difference between these rates and the maximum
allowed by the state is that the Center pays for workers'
compensation and unemployment insurance from the remainder of the
state allowance. The frail elderly waiver reimburses between
$12.00 and $13.25, depending on the level of care the consumer
requires; the waiver for people with developmental disabilities
offers a flat hourly rate of $10.40. These amounts are then
subject to withholding and insurance, resulting in the caregiver's
receiving approximately $6 to $8. Few fringe benefits-such as
workers' compensation, health insurance, and paid leave-are
available for personal caregivers. Of the four states we visited,
only California offers workers' compensation to all personal
caregivers; Kansas offers selective coverage, depending in part on
the choice of the consumer or vendor agency. In California, active
consideration is being given to providing health insurance
coverage; San Francisco began providing health insurance coverage
in March 1999, and a few counties are also exploring health
insurance options. None of the four states offers sick or vacation
leave to consumer-directed personal caregivers. In two of the four
states-Oregon and California-labor unions are attempting to
organize the states' personal care workforces with the goal of
improving wage and benefit levels. The unions face special
challenges because of the extent of consumer direction, which
results in a highly decentralized workforce. Of the two states,
greater organizing progress has been made in California where, as
of February 1999, personal caregivers in six counties, including
Los Angeles, voted in favor of representation by the Service
Employees International Union. In Oregon, 34A.E. Benjamin, R.E.
Matthias, and T.M. Franke, Comparing Client-Directed and Agency
Models for Providing Supportive Services at Home, report for the
Assistant Secretary for Planning and Evaluation, HHS (Los Angeles,
Calif.: Sept. 30, 1998). Page 37
GAO/HEHS-99-101 Severely Disabled Adults B-280728 the Oregon
Public Employees Union, with the help of its umbrella
organization, the Service Employees International Union, has
submitted legislation to form a Home Care Providers Commission.
One of the main functions of this commission would be to
collectively bargain on behalf of client-employed providers. Views
Differ on Monitoring State and local agencies charged with
paying for and regulating personal Service Quality
care confront special challenges because of the basic
characteristics of self-directed personal care, including the
setting in which care is delivered and the nature of both the
clientele and the workforce. Moreover, state efforts to intervene
to protect consumers have engendered controversy across subgroups
of the disability population and their advocates, some of whom
view government oversight as intrusive. As a service delivered in
individuals' homes, in diffuse settings, personal care is by
nature more difficult to monitor than care delivered in a
centralized setting to multiple individuals (for example, in a
nursing home or adult day care center). Consumer direction further
complicates the task of oversight because it leads to considerable
variation and adjustment to individual circumstances, resulting in
a less standardized "product." In addition, consumer-directed
personal care requires closer monitoring than services provided
through agencies, which are often obligated to ensure the
qualifications and performance of their employees. Finally, at
least some of the adult disabled and elderly populations have
degrees of mental impairment that restrict or prohibit their
ability to oversee their own affairs and may require some sort of
special protection. Older consumers are sometimes at special risk
because of dementia and depression, which can accompany the aging
process. But some younger adults with disabilities also experience
limitations in mental capacity, such as those associated with
mental retardation and certain other developmental disabilities.
Officials, Consumers, and Recognizing their responsibility
for protecting the most vulnerable Advocates See the Need to
consumers of personal care-especially the elderly and mentally
Balance Safety With Autonomy impaired-state and local
government officials with whom we spoke were generally inclined to
support broad intervention strategies to protect consumers. Other
things being equal, these officials seemed to prefer erring on the
side of too much rather than insufficient protection. Although
none of the four states we contacted was considering imposing
licensure or certification requirements or demanding credentials
for personal caregivers, efforts are being made to train personal
caregivers as Page 38 GAO/HEHS-
99-101 Severely Disabled Adults B-280728 a quality assurance
measure in some of the states we visited. The importance of
training is exemplified by caregivers' frequent need to assist
consumers in rising from beds or chairs or in moving about their
homes. Without training in lifting or transferring techniques,
workers may injure themselves or the people for whom they are
caring. To some extent, a pivotal issue in the consumer protection
debate is tolerance of risk to the consumer's personal safety.
Some consumers and advocates are more willing to tolerate risk if
it allows greater personal autonomy, while others believe that
protection of vulnerable consumers must take priority.35 Those on
both sides of the issue seem willing to concede, however, that
exceptions can and should be made, and individual circumstances
should ultimately govern policy. Maine officials noted concerns
about the liability of caregivers who provide services in
accordance with consumers' instructions that may not meet quality
or safety standards. In this regard, Maine officials stated that
nurses have raised similar concerns.36 Conclusions Our
review of federal and state approaches to providing personal care
in home- and community-based settings suggests that the
willingness and capacity to do so exist. Increasingly, states are
taking advantage of the flexibility available through the use of
Medicaid HCBS waivers to design and target programs to individuals
with disabilities that meet unique state needs. The personal care
programs we examined in California, Kansas, Maine, and Oregon
reflect the diversity of approaches and can serve as useful models
for other states that may wish to expand the delivery of services
in noninstitutional settings and emphasize consumer participation
in directing services to meet their own care needs. Agency and
State HCFA and the four states we visited were given an
opportunity to review a Comments draft of this report.
They generally agreed with our description of individuals with
disabilities and the federal programs providing services. HCFA
identified several areas in which the report could be clarified.
As a result, we revised language addressing (1) home health
services under 35In particular, the subject of criminal background
checks for personal caregivers is a controversial issue. Advocates
for younger adults with physical disabilities see this idea as
unnecessary and overly intrusive, while state officials and other
advocates see it as imperative to protect vulnerable consumers.
Within these groups there is also skepticism about the efficacy of
background checks given the incompleteness of criminal justice
databases. Other difficulties surrounding the issue include the
expense of such background checks as well as reluctance at the
state and local levels to fund them. 36In this case, nurses are
not supervising the caregiver but are providing in-home nursing
care. Page 39
GAO/HEHS-99-101 Severely Disabled Adults B-280728 Medicare and
Medicaid and (2) the PCS benefit option under Medicaid. We
incorporated other technical comments from both HCFA and the
states as appropriate. We are sending copies of this report to the
Honorable Donna E. Shalala, Secretary of Health and Human
Services; the Honorable Nancy-Ann Min DeParle, Administrator of
HCFA; appropriate congressional committees; and other interested
parties. If you or your staff have any questions about this
report, please call me at (202) 512-7118 or Walter Ochinko,
Assistant Director, Health Financing and Public Health Issues, at
(202) 512-7157. Other major contributors are listed in appendix
VII. Kathryn G. Allen Associate Director, Health Financing and
Public Health Issues Page 40
GAO/HEHS-99-101 Severely Disabled Adults Page 41 GAO/HEHS-99-
101 Severely Disabled Adults Contents Letter
1 Appendix I
46 Objectives, Scope, and Methodology Appendix II
50 Federal Programs Directed Specifically at Individuals With
Disabilities Appendix III
58 Other Federal Programs With Disability as a Criterion for
Eligibility Appendix IV
68 Medicaid Expenditures for Personal Care and Related Services
Appendix V
71 States' Use of Home Health, the PCS Benefit, and HCBS Waivers
Page 42 GAO/HEHS-99-101 Severely Disabled Adults Contents
Appendix VI
82 Cash and Counseling Demonstration and Evaluation Appendix VII
87 Major Contributors to This Report Tables
Table 1: Beneficiaries' Use of Medicare Home Health Aides, 1996
16 Table 2: States' Use of the PCS Benefit, Ranked by Percentage
of 22 Total Medicaid Community-Based Expenditures,
Fiscal Year 1998 Table 3: Range of Attributes of HCBS Waivers
Offering Personal 25 Care Services, 1998 Table 4:
Selected Characteristics of HCBS Waivers With Personal
26 Care, 1998 Table 5: Variation in Consumer Direction of Personal
Care in 35 Four States Table IV.1: Medicaid
Community-Based Expenditures, Fiscal Year 69 1998
Table V.1: Limits Imposed Under the Medicaid Home Health
72 Benefit Table V.2: Limits Imposed Under the Medicaid PCS
Benefit 75 Table V.3: Clients Served by
Medicaid HCBS Waivers With 77 Personal Care,
1997 Table VI.1: Consumer Interest in a Cash Model
85 Figures Figure 1: Estimates of Number of
Adults With Severe Disabilities, 9 1994-95 Figure 2:
Selected Characteristics of Adults With Severe
10 Disabilities Compared With Those of the General Population,
1994-95 Figure 3: Adults With Severe Disabilities Covered by
Public 12 Health Insurance, 1994-95 Figure 4:
Distribution of the Estimated $110 Billion Designated
14 Specifically for Individuals With Disabilities, by Budget
Function, Fiscal Year 1999 Figure 5: Medicare Home Health
Expenditures, 1981-97 15 Page 43
GAO/HEHS-99-101 Severely Disabled Adults Contents Figure 6:
Comparison of Growth in Medicare and Medicaid Home
18 Health Expenditures, 1987-97 Figure 7: States Offering the PCS
Benefit, 1998 20 Figure 8:
Medicaid HCBS Waivers With and Without Personal
24 Care Services, 1998 Figure 9: Self-Direction Can Be Analogous
to Operating a Small 30 Business Figure 10:
Consumer-Directed Personal Care in the States
32 Figure IV.1: Growth in Medicaid Expenditures for Personal Care
68 and Related Services, 1987-98 Abbreviations ADA
Americans With Disabilities Act of 1990 ADL activities
of daily living AIDS acquired immunodeficiency syndrome
APHSA American Public Human Services Association ARC
AIDS-related complex CCDE Cash and Counseling
Demonstration and Evaluation HCBS home- and community-
based services HCFA Health Care Financing Administration
HHS Department of Health and Human Services HIV
human immunodeficiency virus HUD Department of Housing
and Urban Development IADL instrumental activities of
daily living NHIS National Health Interview Survey PCS
personal care services VA Department of Veterans
Affairs Page 44 GAO/HEHS-99-
101 Severely Disabled Adults Page 45 GAO/HEHS-99-101 Severely
Disabled Adults Appendix I Objectives, Scope, and Methodology To
estimate the number of people with severe disabilities, we
reviewed several national surveys, including the Medical
Expenditure Panel Survey, the Survey of Income and Program
Participation, and the Medicare Current Beneficiary Survey. We
selected the 1994 and 1995 National Health Interview Surveys
(NHIS) for analysis in part because individuals were asked to
report the level of difficulty they had in performing activities
of daily living (ADL) and instrumental activities of daily living
(IADL), thus providing some measure of the severity of their
conditions. NHIS also provided information regarding individuals'
need for personal care and related assistance with ADLs and IADLs,
as well as data on individuals' ability to work. NHIS data report
on noninstitutionalized individuals; thus, our sample excludes
individuals residing in nursing homes or other institutions. By
combining 2 years of NHIS data, we were able to increase the
sample size and decrease the sampling standard error of our
estimates. Because our estimate of the number of individuals with
severe disabilities is based on a sample of the population, it is
subject to sampling errors. The highest standard error (a measure
of sampling error) of our population estimates was +/- 1.6 percent
of total estimates. For our comparison of the demographics of
individuals with severe disabilities with those of the general
population, the percentage sampling error was within a 95-percent
confidence interval. Finally, we did not verify the accuracy of
the survey data; however, NHIS is a recognized national survey
instrument with established procedures in place to ensure a
reasonable level of reliability of estimates. We consulted with
national research organizations and interest groups regarding a
definition of individuals with severe disabilities, obtaining
input on the advisability of including both ADL and IADL
components. Despite the fact that NHIS specifically asks about
supervision of ADLs, research and advocacy organizations believed
that an IADL component was necessary to better ensure that
individuals with mental or cognitive impairments were represented
in our sample. On the basis of these discussions and our research,
we defined an adult with severe disabilities as an individual who
reported either a lot of difficulty with performing or inability
to perform either (1) three or more ADLs or (2) two ADLs and four
IADLs. In some cases, individuals with mental impairments, such as
developmental disabilities, mental illness, and other conditions,
can physically perform ADLs, IADLs, or both, but supervision or
oversight is necessary to ensure that self-care is safely,
consistently, and appropriately performed. Although we relied on a
definition that included IADLs, our estimates maintained a
predominant focus on ADLs because of Page 46
GAO/HEHS-99-101 Severely Disabled Adults Appendix I Objectives,
Scope, and Methodology their close tie to personal care needs. In
this regard, the definition applied for this report is more
heavily weighted toward individuals with physical impairments. To
identify federal programs for which people with disabilities are
likely to qualify, we reviewed the December 1998 Catalog of
Federal Domestic Assistance (Washington, D.C.: General Services
Administration, Dec. 1998) for program descriptions containing
variations of the terms "disability" and "handicap." The catalog
is a governmentwide compendium of federal programs, projects,
services, and activities that provide assistance or benefits to
the American public. It contains financial and nonfinancial
assistance programs administered by departments and other entities
of the federal government. We included in our program count cash
assistance, grant, and direct service programs for which adults
with disabilities are eligible. Grants and activities for children
were excluded because our focus was on adults. In addition, we did
not include research, affirmative action and advocacy, and
architectural barriers and compliance programs because they do not
involve the direct provision of cash, benefits, or other services
to people with disabilities.37 We subsequently divided the
identified grants and activities into two groups: (1) those for
which disability was the primary condition of program
participation and (2) those for which program participation did
not depend solely on an individual's having disabilities.38 We
compiled estimated federal expenditures for the first group to
arrive at a total federal commitment of $110 billion for fiscal
year 1999. We did not determine the amount of estimated
expenditures for the second group because eligibility for these
programs did not depend only on disability. To identify the amount
and type of personal care provided under Medicaid and Medicare, we
reviewed both existing research and Health Care Financing
Administration (HCFA) expenditure reports. For the Medicaid home
health and personal care services (PCS) benefits, we used HCFA 64
37Our search yielded several grants and activities that were not
directly related to individuals with disabilities. For example,
some programs contained a generic statement regarding the
illegality of discriminating against individuals with
disabilities. We did not include such programs in our count. 38The
Supplemental Security Income program provides cash benefits to
individuals with disabilities or those who are aged. Because 77
percent of the participants in this program have disabilities, we
included this percentage of expenditures in our calculations of
federal commitments to individuals with disabilities. Page 47
GAO/HEHS-99-101 Severely Disabled Adults Appendix I Objectives,
Scope, and Methodology and 2082 data sources on expenditures and
recipients.39 Using the Commerce Clearing House, Inc., Medicare
and Medicaid Guide, we identified states offering the PCS benefit
and grouped them by the eligibility categories and service limits
imposed by each state. To identify home- and community-based
service (HCBS) waivers, we used an August 1998 database maintained
by the American Public Human Services Association (APHSA). We then
summarized available cost and recipient data on HCBS waivers.
However, not all waivers in the database had cost data and
recipient counts; hence, data on HCBS waivers are likely to
represent an undercount of consumers and expenditures. To identify
states with consumer-directed services, we reviewed the APHSA
database of waivers, conducted a literature search, and contacted
research and advocacy organizations. To examine how a select group
of states directs personal care services to those most in need and
how these states have implemented consumer direction, we conducted
an extensive literature review and held discussions with research
and advocacy organizations. We selected our state sample with the
purpose of identifying a range of considerations, including states
that * were identified as leaders in offering consumer-directed
personal care; * offered HCBS waivers with personal care, with a
broad range in per capita spending; * made significant use of the
PCS benefit under Medicaid; and * targeted a mixture of
populations, such as the aged, those with disabilities, and those
with mental disabilities. Our objective was to select states
representing a broad diversity of approaches to personal care and
consumer direction. Thus, we selected California in part because
of its extensive use of the PCS benefit, and Oregon because of its
extensive use of an HCBS waiver. Maine and Kansas afforded
additional variety in their use of multiple HCBS waivers and
differences in their use of the PCS benefit. During our fieldwork,
we met with state and local agencies, interest groups, consumers,
and unions representing or seeking to represent caregivers in
order to obtain a variety of perspectives on the services and
programs offered in each state. In our discussions, we focused on
strategies for monitoring services and 39HCFA 64 is a quarterly
Medicaid expenditure report that summarizes data submitted by the
states. HCFA 2082 is an annual statistical report with data on
Medicaid eligibles, recipients, services, and expenditures derived
from the states and summarized by HCFA. We did not verify the
accuracy of HCFA expenditure reports. Page 48
GAO/HEHS-99-101 Severely Disabled Adults Appendix I Objectives,
Scope, and Methodology targeting client populations, and we asked
each group and organization to highlight areas of concern
regarding consumer-directed services. Page 49
GAO/HEHS-99-101 Severely Disabled Adults Appendix II Federal
Programs Directed Specifically at Individuals With Disabilities
Using a compilation of 237 programs from the Catalog of Federal
Domestic Assistance, we identified 30 programs, services, and
activities that target individuals with disabilities. These
programs are identified below by budget function and estimated
fiscal year 1999 expenditures. Three programs-Social Security
Disability Insurance, Supplemental Security Income, and Veterans
Compensation for Service-Connected Disability-account for 86
percent of the funds obligated. Education, Training, Employment,
and Social Services Budget Subfunction Books for the Blind
and Physically Handicapped ($48.1 million). 503-Research and
Provides library services to the blind and physically handicapped
by General Education Aids offering cassette players and books
on cassettes, on disks, and in Braille. Budget Subfunction
Rehabilitation Act: Independent Living Centers ($46.1 million).
506-Social Services Provides grants for establishing and
operating statewide networks of centers for independent living to
help people with severe disabilities function more independently
in family and community settings. Core services provided must
include information and referral services, training in independent
living skills, peer counseling, and individual and system
advocacy. The governing board and the majority of staff and
individuals in decision-making positions must be individuals with
disabilities. Rehabilitation Act: Independent Living State Grants
($22.3 million). Provides grants to help states promote a
philosophy of independent living, consumer control, peer support,
self-help, self-determination, equal access, and individual and
system advocacy. Independent living funds are used to support the
statewide Independent Living Council and to maximize the
leadership, empowerment, independence, and productivity of
individuals with disabilities, as well as the integration and full
inclusion of individuals with disabilities into mainstream
American society. Rehabilitation Act: Independent Living Services
for Older Individuals Who Are Blind ($11.2 million). Provides
project grants to authorized state agencies to provide
rehabilitation services to individuals Page 50
GAO/HEHS-99-101 Severely Disabled Adults Appendix II Federal
Programs Directed Specifically at Individuals With Disabilities
aged 55 and over who are blind, or whose severe visual impairments
make competitive employment extremely difficult to attain, but for
whom independent living in their own homes or communities is
feasible. Services provided include (1) those designed to help
correct or modify visual disabilities, (2) eyeglasses and other
visual aids, (3) services and equipment to enhance mobility and
self-care, and (4) training in Braille. Rehabilitation Services-
Vocational Rehabilitation Grants ($2.3 billion). Assists states in
providing vocational rehabilitation services and goods, including
assessment, counseling, vocational and other training; job
placement; reader services for the blind; interpreter services for
the deaf; medical and related services; prosthetic and orthotic
devices; rehabilitation technology; transportation to vocational
rehabilitation sites; maintenance during rehabilitation; and other
goods and services necessary for an individual with a disability
to prepare for and engage in competitive employment.
Rehabilitation Act: American Indians With Disabilities ($17.6
million). Provides project grants to governing bodies of American
Indian tribes for vocational rehabilitation services for Indians
with disabilities who reside on federal or state reservations to
prepare them for suitable employment. Projects funded are for
services over and above those provided by the Rehabilitation Act
Basic Support Program, which is administered by the states, and
include on-the-job training through tribal industries; support for
self-employment in food services, crafts, and other enterprises;
and special vocational and academic training through tribal
colleges. Projects generally require 10-percent matching funds in
cash or in kind. Rehabilitation Act: Special Projects and
Demonstrations for Providing Vocational Rehabilitation Services to
Individuals With Severe Disabilities ($18.9 million). Provides
grants to states and public and other nonprofit organizations for
projects and demonstrations that expand or improve vocational
rehabilitation and other rehabilitation services for individuals
with disabilities-especially those with the most severe
disabilities. Projects may also be conducted to meet the special
needs of individuals that are unserved or underserved.
Developmental Disabilities Projects of National Significance ($5.3
million). Provides grants and contracts for the development of
national and state policy that enhances the independence,
productivity, and integration and inclusion into the community of
people with Page 51 GAO/HEHS-
99-101 Severely Disabled Adults Appendix II Federal Programs
Directed Specifically at Individuals With Disabilities
developmental disabilities. Project grants have been used to
educate policymakers, fund federal interagency initiatives,
enhance minority participation in public and private sector
initiatives on developmental disabilities, and provide technical
assistance and data collection and analysis. Funded projects
include the provision of personal assistance services to
individuals with disabilities. Rehabilitation Act: Service
Projects ($5.9 million). Provides grants to state vocational
rehabilitation agencies and public nonprofit organizations for
projects and demonstrations that hold promise for expanding or
improving vocational and other rehabilitation services for
individuals with severe disabilities over and above the services
provided by the Rehabilitation Act Basic Support Program. Projects
provide financial assistance for vocational rehabilitation
services to migratory agricultural or seasonal farmworkers and for
projects that initiate integrated programs of recreation for
individuals with disabilities. Rehabilitation Act: Projects With
Industry ($22.1 million). Awards grants to employers, labor
unions, for-profit and nonprofit organizations, institutions, and
state vocational rehabilitation agencies to create and expand job
and career opportunities for individuals with disabilities in the
competitive labor market by joining with private industry to
provide job training and placement, as well as career advancement
services. A 20-percent match is required. Rehabilitation Act:
Supported Employment Services for Individuals With Severe
Disabilities ($38.2 million). Provides formula grants for time-
limited services leading to supported employment for individuals
with the most severe disabilities. Funds are used to provide (1)
services complementary to title I of the Rehabilitation Act, (2)
skilled job trainers who accompany workers for intensive on-the-
job training, (3) systematic training, (4) job development, (5)
follow-up services, (6) regular observation or supervision at
training sites, and (7) other services needed to support an
individual in employment. Senior Companion Program ($35.2
million). Provides grants to state and local agencies and private
nonprofit organizations to afford income-eligible people, aged 60
and older, the opportunity to provide personal assistance and
companionship to other seniors through volunteer service; provide
nonmedical personal support to adults who, without support, might
be inappropriately placed in long-term care facilities; help
people who have been discharged from health care facilities and
other Page 52 GAO/HEHS-99-
101 Severely Disabled Adults Appendix II Federal Programs Directed
Specifically at Individuals With Disabilities institutions; and
provide companionship to people with developmental disabilities
and other special needs. The grants may be used for Senior
Companion stipends, transportation, physical examinations,
insurance, and meals; staff salaries, fringe benefits, and travel;
equipment and space; and so on. Technology-Related Assistance
State Grants ($30 million). Provides grants to states to help them
develop and implement comprehensive, consumer-responsive statewide
programs of technology-related assistance for individuals of all
ages with disabilities. States may provide assistance to statewide
community-based organizations or directly to individuals with
disabilities. Income Security Budget Subfunction Shelter
Plus Care ($65 million). Provides project grants to states, units
604-Housing Assistance of local governments, Indian tribes, and
public housing agencies to provide rental assistance, in
connection with other supportive services funded from sources
other than this program, to homeless people with disabilities.
Rental assistance is available for tenant-based, sponsor-based,
project-based, and single-room occupancy for homeless individuals.
Supportive Housing for Persons With Disabilities (also appears
under subfunction 371 for mortgage credit) ($174 million).
Provides capital advances to finance the construction,
rehabilitation, or purchase of buildings for supportive housing
for people with disabilities for use as group homes. Project
rental assistance is also used to cover any part of the Housing
and Urban Development (HUD)-approved operating costs of a facility
that is not met from project income. Multifamily Housing Service
Coordinators (also appears under subfunction 451 for community
development) ($6.5 million).40 Provides project grants to owners
or managers of conventional public housing projects to hire
service coordinators to link elderly and disabled assisted housing
residents with supportive or medical services in the general
community; prevent premature and unnecessary institutionalization;
and assess individual service needs, determine 40Represents
expenditures for FY 1998; estimated expenditures for FY 1999 were
not available. Page 53
GAO/HEHS-99-101 Severely Disabled Adults Appendix II Federal
Programs Directed Specifically at Individuals With Disabilities
eligibility for public services, and make resource allocation
decisions that enable residents to stay in the community longer.
Budget Subfunction Supplemental Security Income ($21.4
billion).41 Provides cash 609-Other Income payments to
ensure a minimum level of income to people who are aged 65
Security or older or who are blind or disabled.
Eligibility is based on an assessment of the individual's monthly
income and resources, U.S. residency, and citizenship or alien
status. Social Security Budget Subfunction Social Security
Disability Insurance ($57.3 billion). Replaces part of 651-Social
Security the earnings of qualified disabled workers under
age 65 who are unable to engage in any substantial gainful
activity because of a medically determinable physical or mental
impairment that has lasted or is expected to last at least 12
months, or to result in death. The program provides monthly cash
benefits to eligible disabled people and eligible auxiliary
beneficiaries, such as certain family members, throughout the
period of disability. Costs of vocational rehabilitation are also
paid for certain beneficiaries. Veterans' Benefits and Services
Budget Subfunction Veterans Compensation for Service-
Connected Disability 701-Income Security for ($15.3 billion).
Compensates veterans for disabilities incurred or Veterans
aggravated during military service according to the average
impairment of earning capacity such a disability would cause in
civilian occupations. Benefits are paid from when the injury
occurred or disease was contracted as well as from the time a
preexisting injury occurred or disease was contracted in the
active military. Veterans Pension for Non-Service-Connected
Disability ($2.3 billion). Assists wartime veterans in need whose
41Represents expenditures for only the disabled Supplemental
Security Income program population. Total program estimated
expenditures for FY 1999 are $27.8 billion. Page 54
GAO/HEHS-99-101 Severely Disabled Adults Appendix II Federal
Programs Directed Specifically at Individuals With Disabilities
non-service-connected disabilities are permanent and totally
prevent them from obtaining substantial gainful employment.
Veterans who have had 90 days or more of honorable active wartime
service in the armed forces or who were released or discharged
with less than 90 days of service because of a service-connected
disability are eligible. Income restrictions are prescribed, and
pensions are not payable to those whose estates are so large that
it is reasonable that they could be used for maintenance. Budget
Subfunction Vocational Rehabilitation for Disabled
Veterans ($403 million). 702-Veterans Education, Provides all
services and assistance necessary to enable service-disabled
Training, and veterans and those receiving treatment
for a service-connected disability Rehabilitation
pending discharge to achieve maximum independence in daily living
and, to the maximum extent feasible, to become employable and to
obtain and maintain suitable employment. Veterans' Specially
Adapted Housing ($14.7 million). Assists certain severely disabled
veterans in acquiring suitable housing units with special fixtures
and facilities made necessary by the nature of the veterans'
disabilities. For veterans with permanent, total, and compensable
disabilities related to service, the Department of Veterans
Affairs (VA) provides 50 percent of the cost to the veteran of the
housing unit, land, fixtures, and allowable expenses up to a
maximum grant of $43,000. The program also provides funds for
certain adaptations and equipment not to exceed a maximum grant of
$8,250. Automobiles and Adaptive Equipment for Certain Disabled
Veterans and Members of the Armed Forces ($26.2 million). Provides
financial assistance to certain service members and veterans with
disabilities toward a one-time payment for an automobile or other
conveyance and an additional amount for adaptive equipment deemed
necessary to ensure the eligible person will be able to operate or
make use of the automobile or other conveyance. Provides financial
assistance to veterans with honorable service and service members
on duty who have a service-connected disability due to the loss or
permanent loss of use of one or both feet, the loss of one or both
hands, or a permanent impairment of vision of both eyes to a
prescribed degree. Budget Subfunction Veterans Outpatient
Care ($8.0 billion). Provides medical and dental 703-Hospital and
Medical services on an outpatient basis, including examination;
treatment; certain Care for Veterans home health
services; podiatric, optometric, and surgical services; Page 55
GAO/HEHS-99-101 Severely Disabled Adults Appendix II Federal
Programs Directed Specifically at Individuals With Disabilities
medicines; and medical supplies to veterans who are 50-percent or
more service-connected disabled. Pre-bed care, posthospital care,
and care to obviate the need for hospitalization for any condition
must be furnished to veterans rated 30- or 40-percent service-
connected disabled and those whose annual income does not exceed
the pension rate of a veteran in need of regular aid and
attendance. Several other groups of veterans also qualify for
these benefits, and veterans whose eligibility falls within the
discretionary category who agree to make a copayment can be
furnished outpatient care, services, or both on a facilities- and
resource-available basis. Veterans Prescription Service ($1.6
billion). Provides eligible veterans (that is, veterans receiving
Veterans Outpatient Care benefits) and certain dependents and
survivors of veterans with prescription drugs and expendable
medical supplies. Veterans receiving medications on an outpatient
basis from VA facilities for treatment of a non-service-connected
disability or condition are required to make a copayment of $2 for
each supply of medication for 30 days or less. Veterans receiving
medications for the treatment of a service-connected condition and
veterans rated 50-percent or more service-connected disabled are
exempt from this copayment requirement. Blind Veterans
Rehabilitation Centers and Clinics ($59.8 million). Provides
personal and social adjustment programs and medical or health-
related services for eligible blind veterans at selected VA
medical centers maintaining centers for rehabilitation of the
blind. Veterans Prosthetic Appliances ($395.4 million). Provides
through purchase or fabrication prosthetic and related devices,
equipment, and services to disabled veterans to enable them to
live and work as productive citizens. This assistance includes
replacement and repair of devices; training in the use of
artificial limbs; and provision of artificial eyes, wheelchairs,
aids for the blind, hearing aids, braces, orthopedic shoes,
eyeglasses, crutches and canes, medical equipment, implants,
medical supplies, and automotive adaptive equipment. Budget
Subfunction Veterans Housing-Direct Loans for Certain
Disabled Veterans 704-Veterans Housing (amount not available).
Provides direct loans of up to $33,000 to permanently and totally
disabled veterans if (1) they are eligible for a VA Specially
Adapted Housing grant, (2) a loan is necessary to supplement the
Page 56 GAO/HEHS-99-101
Severely Disabled Adults Appendix II Federal Programs Directed
Specifically at Individuals With Disabilities grant, and (3) home
loans from a private lender are not available in the area where
the property is located. Budget Subfunction Disabled
Veterans' Outreach Program ($80 million). Provides 705-Other
Veterans formula grants to be used only for salaries and
expenses and reasonable Benefits and Services support of
Disabled Veterans' Outreach Program specialists who shall be
assigned only those duties directly related to meeting the
employment needs of eligible veterans-that is, developing and
promoting on-the-job training and apprenticeship positions within
VA programs; providing outreach assistance to local employment
service offices; promoting maximum employment opportunities for
veterans; and providing job placement, counseling, testing, and
job referral to eligible veterans, especially disabled veterans of
the Vietnam era. General Government Budget Subfunction
Rehabilitation Act: Federal Employment for Individuals With 805-
Central Personnel Disabilities (amount not available).
Encourages federal agencies to Management provide
employment opportunities to individuals with physical, cognitive,
or mental disabilities in positions for which they qualify. Page
57 GAO/HEHS-99-101 Severely
Disabled Adults Appendix III Other Federal Programs With
Disability as a Criterion for Eligibility Forty federal programs
include disability as one of many potential criteria for program
participation. Within these 40 programs, Medicare and Medicaid are
the most significant sources of federal funds that provide
personal care services to individuals with disabilities. Commerce
and Housing Credit Budget Subfunction Rural Rental Housing
Loans. Provides loans to construct or purchase 371-Mortgage Credit
and substantially rehabilitate rental or cooperative housing or to
develop manufactured housing projects that generally consist of
two or more family units and any appropriate related facilities
suitable for rural areas. Occupants must be low- or moderate-
income families, the elderly, or individuals with disabilities.
Loans may not be made for nursing, special care, or institution-
type homes. Mortgage Insurance Rental Housing for the Elderly. HUD
insures lenders against loss on mortgages approved under section
231 of the National Housing Act to finance construction or
rehabilitation of detached, semidetached, walk-up, or elevator-
type rental housing designed for occupancy by the elderly or
individuals with disabilities and consisting of five or more
units. Mortgage Insurance Rental and Cooperative Housing for
Moderate Income Families and Elderly. HUD insures lenders against
loss on mortgages approved under section 221 of the National
Housing Act to finance construction or rehabilitation of detached,
semidetached, row, walk-up, or elevator-type rental housing
containing five or more units and designed for occupancy by
moderate-income families, the elderly, and individuals with
disabilities. Budget Subfunction Small Business Loans.
Provides guaranteed loans to low-income small 376-Other
Advancement business owners; businesses located in areas of
high unemployment; of Commerce nonprofit sheltered
workshops; and small businesses owned, being established, or being
acquired by individuals with disabilities who are unable to obtain
financing in the private credit marketplace. Page 58
GAO/HEHS-99-101 Severely Disabled Adults Appendix III Other
Federal Programs With Disability as a Criterion for Eligibility
Transportation Budget Subfunction Capital Assistance Program
for Elderly Persons and Persons With 401-Ground
Disabilities. Provides financial assistance in meeting the
transportation Transportation needs of elderly people and
people with disabilities where public transportation services are
unavailable, insufficient, or inappropriate. Education, Training,
Employment, and Social Services Budget Subfunction TRIO
Student Support Services. Provides grants to institutions of 502-
Higher Education higher education for low-income, first-
generation college students or students with disabilities who are
in need of academic support in order to pursue a program of
postsecondary education. Funds may be used to provide personal and
academic counseling, career guidance, instruction, mentoring, and
tutoring. Budget Subfunction Job Training Partnership Act.
Provides formula grants to states for 504-Training and
establishing programs to prepare economically disadvantaged youth
and Employment adults facing serious barriers to
employment for participation in the labor force by providing job
training and other services that will result in increased
educational and occupational skills, increased employment and
earnings, and decreased welfare dependency. Not less than 65
percent of the recipients shall be in one or more of the following
categories: deficient in basic skills, recipients of cash welfare
payments, school dropouts or students 1 or more years below grade
level, individuals with disabilities, homeless or runaway youth,
and youth who are pregnant or parenting. Employment Service.
Provides formula grants to states to support a nationwide network
of public employment offices to place people in employment by
providing a variety of placement-related services. These services
are available without charge to job seekers and to employers
seeking qualified individuals to fill job vacancies. Workers and
veterans with disabilities are entitled to special employment
services. Page 59 GAO/HEHS-
99-101 Severely Disabled Adults Appendix III Other Federal
Programs With Disability as a Criterion for Eligibility Veterans'
Employment Program. Provides grants to states to develop programs
to meet the employment and training needs of veterans with
service-connected disabilities, veterans of the Vietnam era, and
veterans recently separated from military service. Budget
Subfunction Social Services Block Grant. Provides formula
grants to enable each 506-Social Services state to furnish
the social services best suited to the needs of the individuals
residing in the state. Federal block grant funds may be used to
provide services for one of the following five goals: (1) prevent,
reduce, or eliminate welfare dependency; (2) help individuals
achieve or maintain self-sufficiency; (3) prevent neglect, abuse,
and exploitation of children and adults; (4) prevent or reduce
inappropriate institutional care; and (5) secure admission or
referral for institutional care when other forms of care are not
appropriate. Developmental Disabilities University Affiliated
Programs. Provides grants to defray the cost of administration and
operation of programs that (1) provide interdisciplinary training
for personnel concerned with developmental disabilities; (2)
demonstrate community services activities, which include training
and technical assistance and may include direct services; (3)
disseminate findings related to the provision of services; and (4)
generate information on the need for further service-related
research. Special Programs for the Older Americans Act, Title III,
Part C, Nutrition Services. Provides formula grants to states to
support nutrition services, including providing nutritious meals,
nutrition education, and other appropriate nutrition services for
older Americans in order to maintain their health, independence,
and quality of life. Meals may be served in a congregate setting
or delivered to the home to eligible individuals aged 60 and over
and to individuals under age 60 if they are handicapped or
disabled and reside with and accompany an older individual. Health
Budget Subfunction Medical Assistance Program. The
Medicaid program provides formula 551-Health Care Services
grants to states to provide financial aid for medical assistance
on behalf of cash assistance recipients; children; pregnant women;
individuals who are Page 60
GAO/HEHS-99-101 Severely Disabled Adults Appendix III Other
Federal Programs With Disability as a Criterion for Eligibility
aged, blind, or disabled and who meet income and resource
requirements; and other categorically eligible groups. States can
elect to provide similar coverage to medically needy people who,
except for income and resource limitations, would be eligible for
cash assistance. Financial assistance is provided to states to pay
for Medicare premiums and copayments and deductibles of qualified
Medicare beneficiaries meeting certain income requirements. More
limited financial assistance is available for certain Medicare
beneficiaries with higher incomes. Medicare Budget Subfunction
Medicare Hospital Insurance. Provides hospital insurance
protection 571-Medicare for covered services to people
aged 65 or older, certain people with disabilities, and
individuals with chronic renal disease. Hospital insurance
benefits are paid to participating and emergency hospitals,
skilled nursing facilities, home health agencies, and hospice
agencies to cover the prospective payment amount or reasonable
cost of medically necessary services furnished to individuals
entitled under this program. People under age 65 who have been
entitled for at least 24 months to Social Security disability
benefits, or for 29 consecutive months to Railroad Retirement
benefits on the basis of disability, are eligible for hospital
insurance benefits. Medicare Supplementary Medical Insurance.
Provides supplementary medical insurance to all people aged 65 or
older; certain people with disabilities, whether insured under
Medicare Hospital Insurance or not, may voluntarily enroll for
this supplemental insurance. Medicare generally pays 80 percent of
the approved amount (fee schedule, reasonable charges, or
reasonable cost) for covered services in excess of the annual $100
deductible. Covered services include doctors' services, lab and
other diagnostic tests, X-ray and other radiation therapy,
outpatient services, therapy, ambulance services, home health
services, and provision of durable medical equipment. Page 61
GAO/HEHS-99-101 Severely Disabled Adults Appendix III Other
Federal Programs With Disability as a Criterion for Eligibility
Income Security Budget Subfunction Social Insurance for
Railroad Workers.42 Provides monthly Social 601-General Retirement
Security benefits, rail industry pensions, permanent and
occupational and Disability Insurance disability benefits,
federal windfall benefits, supplemental annuities, and (Excluding
Social sickness and unemployment benefits to workers and
their families. Security) Longshore and Harbor
Workers' Compensation. Provides compensation for disability or
death resulting from injury, including occupational disease, to
longshore workers, harbor workers, and certain other eligible
employees engaged in maritime employment on the navigable waters
of the United States and adjoining pier and dock areas. Coal Mine
Workers' Compensation. Provides monthly cash benefits to coal
miners who are totally disabled from coal workers' pneumoconiosis
(black lung disease) and to widows and other surviving dependents
of miners who have died of this disease. Special Benefits for
Disabled Coal Miners. Provides monthly cash benefits to coal
miners who have become totally disabled by coal workers'
pneumoconiosis or other chronic lung diseases arising from coal
miner employment and to widows and other surviving dependents of
miners who have died of these diseases. Budget Subfunction
Supportive Housing Program. Provides project grants designed to
604-Housing Assistance promote the development of supportive
housing and services to help people make the transition from
homelessness to living as independently as possible. Program funds
may be used in part to provide for transitional housing for up to
24 months and permanent housing in conjunction with appropriate
supportive services to maximize the ability of people with
disabilities to live as independently as possible. Economic
Development and Supportive Services Program. Provides project
grants to enable public housing agencies and Indian tribes in
partnership with nonprofit or for-profit agencies to (1)
facilitate economic development opportunities and supportive
services to assist residents to become economically self-
sufficient and (2) assist the elderly and people 42This federal
program was also classified under budget subfunction 603 for
unemployment compensation. Page 62
GAO/HEHS-99-101 Severely Disabled Adults Appendix III Other
Federal Programs With Disability as a Criterion for Eligibility
with disabilities to live independently and prevent premature or
unnecessary institutionalization. Operating Assistance for
Troubled Multifamily Housing Projects. Provides loans to the
elderly and people with disabilities to restore or maintain the
physical and financial soundness of eligible housing projects, as
well as to assist in the management and maintenance of the low- to
moderate-income character of certain projects approved for
assistance under the National Housing Act or the Housing and Urban
Development Act of 1965. Rural Rental Assistance Payments.
Provides rental assistance to reduce the rents paid by low-income
senior citizens or families, domestic farm laborers, and citizens
with disabilities occupying eligible rural rental housing whose
rents exceed 30 percent of an adjusted monthly income and whose
income does not exceed the limit established for the state. Rural
Rental Housing Section 538 Guaranteed Loans. Provides guaranteed
loans to encourage the construction of new rural, multifamily
rental housing and appropriate related facilities, generally
consisting of two or more family units. Occupants must have low to
moderate incomes, be elderly, or have disabilities. Income cannot
exceed 115 percent of the median income. Guaranteed loans may not
be made for nursing, special care, or industrial-type housing.
Public and Indian Housing. Provides funding to authorized local
public housing agencies for the operation of cost-effective,
decent, safe, and affordable dwellings for lower-income families,
the elderly, and families with people with disabilities. Budget
Subfunction Food Stamps. Provides low-income households the
ability to improve 605-Food and Nutrition their diets by
increasing their food purchasing ability. Food stamp benefits
Assistance vary on the basis of family size,
income, and level of resources. Food stamps may be used in
participating retail stores to buy food for home consumption; by
certain elderly people and people with disabilities and their
spouses who cannot prepare their own meals and receive meals
delivered to them by authorized meal delivery services; and by
people who are elderly, disabled, or both and their spouses to
purchase meals in establishments providing communal dining for the
elderly. Page 63 GAO/HEHS-
99-101 Severely Disabled Adults Appendix III Other Federal
Programs With Disability as a Criterion for Eligibility Nutrition
Program for the Elderly (Commodities). Provides food for use in
the preparation of congregate or home-delivered meals by nutrition
programs for the elderly. This program is designed to improve the
diets of the elderly and to increase the market for domestically
produced foods acquired under surplus removal or price support
operations. Meals may be served in a congregate setting or
delivered to the home to eligible individuals aged 60 and over
and, in certain cases, under age 60 if the individual is
handicapped or disabled and resides with and accompanies an older
individual. Child and Adult Care Food Program. Assists states,
through grants-in-aid and other means, to initiate and maintain
nonprofit food services programs for children, the elderly, and
adults with impairments in nonresidential day care facilities. The
program is generally limited to children 12 years old and younger,
individuals with disabilities, functionally impaired adults at
least 18 years old, and adults 60 years of age and older. Meals
must meet minimum requirements of the U.S. Department of
Agriculture. Budget Subfunction Family Support Payments to
States. Provides cash payments directly 609-Other Income to
eligible needy families with dependent children through the
Temporary Security Assistance for Needy Families
program and to needy people who are aged, blind, or disabled in
Guam, Puerto Rico, and the Virgin Islands. The program also
provides child care, so that individuals can participate in
approved education and training activities and accept or maintain
employment, and temporary emergency assistance to families with
children. Social Security Budget Subfunction Social Security
Retirement Insurance. Provides monthly cash benefits 651-Social
Security to eligible retired workers and their eligible family
members to replace part of the earnings lost as a result of
retirement. Retired workers aged 62 and over who have worked the
required number of years under Social Security are eligible for
monthly benefits. Also, certain family members can receive
benefits, including (1) a wife or husband aged 62 or older; (2) a
spouse at any age, if a child who is under age 16 or is disabled
is in his or her care and is entitled to benefits on the basis of
the worker's record; Page 64
GAO/HEHS-99-101 Severely Disabled Adults Appendix III Other
Federal Programs With Disability as a Criterion for Eligibility
(3) unmarried children under age 18; (4) unmarried adult offspring
at any age if disabled before age 22; and (5) divorced wives or
husbands aged 62 or older who were married to the worker for at
least 10 years. Veterans' Benefits and Services Budget Subfunction
All-Volunteer Force Educational Assistance. Provides educational
702-Veterans Education, assistance to those who have served on
active duty after June 30, 1985. Training, and This
program also assists in the recruitment and retention of highly
Rehabilitation qualified personnel in the active and
reserve armed forces by extending the benefits of higher education
to those who may not otherwise be able to afford it. Physical or
mental disability that is not the result of the individual's own
willful misconduct can extend the 10 years after release from
service that veterans have to complete their education. Veterans
must serve 2 years before they are eligible for basic educational
assistance. Participants who have not completed the required
obligated service must have been discharged for a service-
connected disability. Post-Vietnam-Era Veterans' Educational
Assistance. Provides educational assistance to people entering the
armed forces after December 31, 1976, and before July 1, 1985, to
help them obtain an education they might otherwise not be able to
afford. This program was also designed to promote and assist the
all-volunteer military program of the United States by attracting
qualified people to serve in the armed forces. Post-Vietnam-era
veterans must have served honorably on active duty for more than
180 continuous days beginning on or after January 1, 1977, or have
been discharged after that date because of a service-connected
disability. Survivors and Dependents Educational Assistance.
Provides partial support to the following individuals who are
seeking to advance their education: qualifying spouses, surviving
spouses, or children between ages 18 and 26 of (1) deceased
veterans or veterans who, as a result of their military service,
have a permanent and total (100-percent) service-connected
disability or (2) service personnel who have been listed for a
total of more than 90 days as currently missing in action or as
prisoners of war. Assistance in the form of monthly payments for
up to 45 months to be used for tuition, books, subsistence, and so
on is available Page 65
GAO/HEHS-99-101 Severely Disabled Adults Appendix III Other
Federal Programs With Disability as a Criterion for Eligibility
for 10 years from the date of the veteran's disability rating or
the date of death of a veteran classified with a total service-
connected disability. Budget Subfunction Veterans Medical
Care Benefits. Provides hospital outpatient medical 703-Hospital
and Medical and dental services, medicines, and medical
supplies to enrolled veterans Care for Veterans in a VA
medical care facility. Eligible veterans include, among others,
those that require treatment for a service-connected disability,
have a service-connected disability rated at 50 percent or more,
have a compensable service-connected disability rated at less than
50 percent, or are former prisoners of war. Budget Subfunction
Veterans Housing Guaranteed and Insured Loans. Provides 704-
Veterans Housing VA-guaranteed or -insured loans to assist
eligible veterans, certain service personnel, and certain
surviving spouses of veterans who have not remarried in obtaining
credit to purchase, construct, or improve homes on more liberal
terms than are generally available to nonveterans. Eligible
veterans include those with a service-connected disability.
Veterans Housing Manufactured Home Loans. Provides VA-guaranteed
or -insured loans to assist eligible veterans, certain service
personnel, and certain surviving spouses of veterans who have not
remarried in obtaining credit to purchase a manufactured home on
more liberal terms than are generally available to nonveterans.
Eligible veterans include those with a service-connected
disability. Native American Veteran Direct Loan Program. Provides
direct loans to certain Native American veterans, certain service
personnel, and certain surviving spouses of Native American
veterans who have not remarried to purchase or construct homes on
trust lands. Eligible veterans include those with a service-
connected disability. Administration of Justice Budget Subfunction
Public Safety Officers' Benefits Program. Provides a $141,556
death 754-Criminal Justice benefit to the eligible
survivors of a federal, state, or local public safety Assistance
officer whose death is the direct and proximate result of a
personal Page 66 GAO/HEHS-
99-101 Severely Disabled Adults Appendix III Other Federal
Programs With Disability as a Criterion for Eligibility
(traumatic) injury sustained in the line of duty. The program also
provides a $141,556 disability benefit to a federal, state, or
local public safety officer whose permanent and total disability
is the direct and proximate result of a personal injury sustained
in the line of duty. General Government Budget Subfunction
Federal Employment Assistance for Veterans. Provides assistance to
805-Central Personnel veterans in obtaining federal employment.
A 5-point preference is given to Management veterans
separated under honorable conditions who served on active duty in
the armed forces of the United States during certain periods of
time or who have a campaign or expeditionary medal. A 10-point
preference is given to disabled veterans and certain wives or
husbands, widows or widowers, and mothers of veterans. Retired
members of the armed forces have not been considered eligible for
preference since October 1, 1980, unless they are veterans with
disabilities or they retired below the rank of major or the
equivalent. Budget Subfunction Weatherization Assistance for
Low-Income Persons. Provides 999-Miscellaneous formula
grants to states to improve the thermal efficiency of dwellings of
low-income people, particularly individuals who are elderly or
handicapped, by the installation of weatherization materials, such
as attic insulation, caulking, weatherstripping, and storm
windows, and by furnace efficiency modification in order to
conserve needed energy and to aid those people least able to
afford higher utility costs. Page 67
GAO/HEHS-99-101 Severely Disabled Adults Appendix IV Medicaid
Expenditures for Personal Care and Related Services Medicaid's
provision of personal care and in-home services has evolved
considerably over the years, particularly as the use of HCBS
waivers as a means of providing community-based services has
grown. For fiscal year 1998, expenditures for Medicaid community-
based services-home health, the PCS benefit, and HCBS waivers-
totaled $14.8 billion. From 1987 to 1998, expenditures grew at an
average annual rate of 16 percent for Medicaid home health, 10
percent for the PCS benefit, and 31 percent for the HCBS waivers
(see fig. IV.1). HCBS waivers account for about 62 percent of all
community-based expenditures under Medicaid, compared with 15
percent for home health and 23 percent for the PCS benefit. Table
IV.1 shows each state's total Medicaid spending for community-
based care and expresses the proportion of total spending for each
of the three benefits. Figure IV.1: Growth in Medicaid
Expenditures for Personal Care and 10 Expenditures (Billions)
Related Services, 1987-98 9 8 7 6 5 4 3 2 1 0 1987 1988
1989 1990 1991 1992 1993 1994 1995 1996
1997 1998 HCBS Waivers Home Health PCS Benefit Source: HCFA.
Page 68 GAO/HEHS-
99-101 Severely Disabled Adults Appendix IV Medicaid Expenditures
for Personal Care and Related Services Table IV.1: Medicaid
Community-Based Expenditures,
Percentage of total expenditures Fiscal year 1998 Fiscal Year 1998
expenditures HCBS State
(millions) PCS benefit waivers Home health Alabama
$141 a 83.72 16.28 Alaska
35 12.11 84.59 3.30 Arizonab
1 19.98 a 80.02 Arkansas
128 49.36 35.04 15.60 California
549 59.10 25.86 15.04 Colorado
266 a 80.52 19.48 Connecticut
410 a 72.73 27.27 Delaware
38 a 80.72 19.28 District of
Columbia 13 2.73 a
97.27 Florida 370
3.82c 67.74 28.44 Georgia
180 a 75.41 24.59 Hawaii
27 a 93.61 6.39 Idaho
36 42.46 45.09 12.45 Illinois
291 a 95.53 4.47 Indiana
97 a 53.65 46.35 Iowa
119 a 63.16 36.84 Kansas
219 3.74 90.29 5.97 Kentucky
183 a 46.94 53.06 Louisiana
89 a 75.18 24.82 Maine
117 3.06 84.86 12.07 Maryland
232 10.39 67.10 22.51 Massachusetts
631 22.05 63.43 14.52 Michigan
520 39.95 54.35 5.69 Minnesota
533 18.49 71.94 9.56 Mississippi
23 a 46.35 53.65 Missouri
318 28.84 68.71 2.45 Montana
41 32.41 64.03 3.56 Nebraska
97 5.58 78.43 15.99 Nevada
21 9.53 55.86 34.61 New Hampshire
109 2.10 94.36 3.54 New Jersey
506 33.51 49.37 17.12 New Mexico
117 a 96.58 3.42 New York
3,950 41.90 36.85 21.24 North
Carolina 482 28.20
57.57 14.23 North Dakota
39 a 95.53 4.47 Ohio
321 a 86.25 13.75 (continued) Page
69 GAO/HEHS-99-101
Severely Disabled Adults Appendix IV Medicaid Expenditures for
Personal Care and Related Services Percentage of total
expenditures Fiscal year 1998 expenditures
HCBS State (millions) PCS
benefit waivers Home health Oklahoma
161 15.03 84.20 0.77 Oregon
295 6.77 93.09 0.14
Pennsylvania 590
a,c 90.57 9.43 Rhode Island
150 a 97.05 2.95 South
Carolina 145 0.81c
88.34 10.85 South Dakota
47 1.55 92.18 6.27 Tennessee
87 a 99.52 0.48 Texas
648 35.33 64.67 a Utah
66 0.66 95.42 3.93 Vermont
71 2.15c 92.04 5.81 Virginia
205 a 96.00 4.00 Washington
432 27.79 69.56 2.66 West
Virginia 150 18.56
67.10 14.34 Wisconsin
435 15.08 72.70 12.21 Wyoming
48 a 91.11 8.89 Total
$14,780 23.47 61.52 15.01 aState
did not report expenditures in this benefit category. bArizona
offers personal care services through a section 1115 waiver
demonstration program; HCFA assigned expenditures from this waiver
to the PCS benefit. cState does not offer the PCS benefit to
adults; expenditures under this benefit represent personal care
services provided to children under the Early Periodic Screening,
Diagnostic, and Treatment program. Source: HCFA. Page 70
GAO/HEHS-99-101 Severely Disabled Adults Appendix V States' Use of
Home Health, the PCS Benefit, and HCBS Waivers Under Medicaid,
states have three approaches for providing personal care, two of
which may be offered at the discretion of the state. First, states
must offer the Medicaid home health services benefit (including
home health aides), which may provide unskilled personal care
services. Second, states may choose to provide the PCS benefit,
which offers unskilled personal care services as a part of the
states' Medicaid benefit package. Third, HCBS waivers give states
the option of providing personal care and other related services
if they choose to do so. All candidates for personal care and
other long-term care services are given individualized
assessments, frequently coupled with environmental evaluations
that take into account the candidates' informal and community
support. The objective is to ensure that (1) services are focused
primarily on those with the greatest need, (2) personal care is
targeted to prevent institutionalization as a first priority, and
(3) only those with no feasible alternative are admitted to
nursing homes. How states approach assessments can vary, primarily
in the degree of professional discretion afforded to the assessor.
Thus, some states use an assessment instrument that produces a
numeric score, which essentially determines the level of care that
the state will provide. Other states rely exclusively on the
professional judgment of the individual assigned to undertake the
assessment. States impose different limits on these services that
are somewhat dependent on the states' use of home health, the PCS
benefit, or HCBS waivers. Under home health and the PCS benefit,
states may limit services through medical necessity or utilization
controls. HCBS waivers provide a much wider array of means to
limit services that includes targeting populations, limiting
geographic availability (statewideness), and capping expenditures.
In all cases, imposing limits on services can help states to
control costs. Home Health States must offer home health
services as a part of their Medicaid program to all beneficiaries
who are entitled to nursing facility services. Under Medicaid, a
physician must order home health services as part of a care plan
that is reviewed periodically and includes part-time or
intermittent nursing services; home health aide services; and
medical supplies, equipment, and appliances suitable for use in
the home. Home health aide services must be provided by a home
health agency and can include the provision of personal care.
States may also choose to provide physical, occupational, and
speech pathology and audiology as optional services. Page 71
GAO/HEHS-99-101 Severely Disabled Adults Appendix V States' Use of
Home Health, the PCS Benefit, and HCBS Waivers States can elect to
limit the number of visits, the number of hours, or the dollar
amount of certain services provided under the Medicaid home health
program. Table V.1 shows the states' major limitations. Sixteen
states specify no limitations, and most states allow established
limits to be exceeded with prior authorization. Table V.1: Limits
Imposed Under the Medicaid Home Health Benefit State
Limits Alabama 104 visits per recipient per
calendar year Alaska a Arizona
a Arkansas 50 visits for any combination of
home health nurse or aide services without prior authorization
California More than one visit in 6 months is
subject to prior authorization and to a physician-approved
treatment plan requirement. A maximum total of 30 visits may be
approved at any one time, valid for a period not exceeding 120
days. Colorado Covered visit is 2-1/2 hours.
No more than five home health visits are covered per day.
Simultaneous visits by two or more individuals count as one visit.
Connecticut Prior authorization is required after
the first two visits for intermittent nursing services when no
home health agency exists in the area; for home health aide
services in excess of 20 hours per week; and for physical,
occupational, speech pathology, and audiology services. Delaware
a District of Columbia 36 visits per year unless prior
authorization is obtained; services of a home health aide are
limited to 4 hours per day except by prior authorization. Florida
60 home health visits per year; 4 visits per day by a registered
nurse; or 1 visit per day by a licensed practical nurse except by
prior authorization Georgia 75 nursing or
home health visits per recipient per calendar year Hawaii
One visit per day during the first 2 weeks; three visits during
the next 5 weeks; one visit per week for the following 7 weeks,
and one visit every 60 days thereafter; additional services
require prior authorization. Idaho 100 per
recipient per calendar year; prior authorization is required for
all medical equipment that costs more than $100 purchased by the
department. Illinois Prior authorization is
required except when services are provided by independently
practicing physical, occupational, or speech therapists or by
community health agencies. Indiana 30
hours/sessions/visits in a 30-day period unless prior
authorization is obtained (continued) Page 72
GAO/HEHS-99-101 Severely Disabled Adults Appendix V States' Use of
Home Health, the PCS Benefit, and HCBS Waivers State
Limits Iowa a Kansas
Home health aide services are limited to one visit per day, and
physical, occupational, speech therapy, and restorative aide
services are limited to 6 months from the first date of service.
Kentucky Prior authorization is required for
durable medical equipment that costs $150 or more. Louisiana
50 nursing and home health aide visits and 50 physical therapy
services per year, except for recipients of Early and Periodic
Screening, Diagnostic and Treatment program services Maine
a Maryland One visit of less than 4 hours per
type of service per day, eight visits per month for physical or
speech pathology, four visits per month for occupational therapy,
and 12 home health aide services per month; services and medical
supplies that cost more than $900 per month require prior
authorization. Massachusetts Prior authorization is
required for home health aide services exceeding 120 hours in a
calendar month when services exceeded 120 hours in each of the 2
preceding months. Michigan a Minnesota
Prior authorization is required, unless a professional nurse
determines an immediate need, for up to 40 visits per calendar
year and for certain medical supplies and equipment. Mississippi
Patients are limited to a combined total of 50 visits per fiscal
year, medical equipment that costs less than $150 must be
purchased, and a determination must be made whether to rent or
purchase equipment that costs more than $150. Missouri
100 visits per patient per year Montana 100
home health visits and 75 skilled nursing visits per recipient per
fiscal year; home health aide services are not provided for an
individual receiving personal care services. Nebraska
40 hours per week and 8 hours per day Nevada
a New Hampshire Prior authorization is required to
purchase durable medical equipment exceeding certain cost limits
as well as portable and in-home oxygen equipment. New Jersey
Personal care assistant services are limited to 25 hours per week.
New Mexico a New York a
North Carolina Prior authorization is required for
durable medical equipment. North Dakota a Ohio
a (continued) Page 73
GAO/HEHS-99-101 Severely Disabled Adults Appendix V States' Use of
Home Health, the PCS Benefit, and HCBS Waivers State
Limits Oklahoma 12 home health visits per
year Oregon a Pennsylvania
15 visits per month after 28 days of unlimited visits, one fee per
visit regardless of services provided, and 1 visit per month for
prenatal care Rhode Island Prior authorization
is required for more than eight visits per month and for all
medical supplies, equipment, and appliances. South Carolina
75 home health agency visits per fiscal year South Dakota
a Tennessee a Texas
50 nurse and home health aide visits per recipient per year
without prior authorization Utah
Housekeeping or homemaking services and occupational therapy are
not covered. Vermont Routine services are
covered for 4 months with a physician's certification. Virginia
32 home health agency or registered nurse visits or home health
aide services and 24 rehabilitative therapy services ordered
annually without prior authorization Washington
Approval is required when the home health service duration or
monthly payment will exceed the program's limits. West Virginia
a Wisconsin 30 visits by a registered aide,
registered nurse, licensed practical nurse, or therapist without
prior authorization; home health aide visits requiring more than 4
hours of continuous care require prior authorization. Wyoming
a aNo limitation specified. Source: Medicare and Medicaid Guide,
Commerce Clearing House, Inc. PCS Benefit Twenty-seven states
and the District of Columbia offer personal care under the PCS
benefit, which is an optional benefit under the Medicaid program.
Nine states43 provide personal care services to only the
categorically needy, which include low-income children; pregnant
women; aged, blind, or disabled people meeting Supplemental
Security Income program requirements; and individuals who are
eligible to receive 43For three of these states (Arkansas,
Oklahoma, and Washington), limiting personal care services to the
categorically needy is a departure from policies on other benefits
in their Medicaid programs, which are offered to both
categorically needy and medically needy individuals. Page 74
GAO/HEHS-99-101 Severely Disabled Adults Appendix V States' Use of
Home Health, the PCS Benefit, and HCBS Waivers federally assisted
income maintenance payments. Such individuals must generally meet
income and resource standards established for public assistance.
The remaining 18 states and the District of Columbia provide
personal care to both categorically needy and medically needy
individuals. The latter group comprises those individuals whose
income, resources, or both exceed the levels for the categorically
needy, but who cannot afford to pay their medical bills. To
control utilization of personal care services, states usually
require prior authorization, establish concrete limits on the
duration of services, or both. Table V.2 lists the control
techniques used by each state. A few states have targeted
eligibility for the PCS benefit by identifying a population or
functional impairment for which they will provide assistance. For
example, New Hampshire limits eligibility to individuals with
chronic disabilities who use a wheelchair, and Florida limits
personal care to children with disabilities. Table V.2: Limits
Imposed Under the Medicaid PCS Benefit State
Limits Alaskaa One assessment and treatment
plan per 12 months Arizonaa b Arkansasc
Services cannot exceed 72 hours per month without prior approval.
California Services must not exceed 283 hours
per month. District of Columbia Services cannot exceed 4
hours per day or 1,040 hours in 12 months without prior
authorization. Idahoa 16 hours per week
Kansas Prior authorization is required for
up to 24 hours per day. Maine Available to
individuals with chronic or permanent disabilities who are able to
self-direct a personal care attendant Maryland
Services are provided at one of four intensity levels of care
subject to prior authorization. Massachusetts Prior
authorization is required. Michigan b
Minnesota Prior authorization is required.
Missouria Need assessment to be completed every
6 months Montana 40 hours per week unless
prior authorization is obtained Nebraska 40
hours per week unless prior authorization is obtained Nevadaa
Prior authorization is required. New Hampshire
Recipients must be chronically wheelchair-bound. New Jersey
25 hours per week or up to 40 hours per week with prior
authorization New York 6 months for one of
three levels of services with prior authorization unless
exceptions are authorized for up to 12 months (continued) Page 75
GAO/HEHS-99-101 Severely Disabled Adults Appendix V States' Use of
Home Health, the PCS Benefit, and HCBS Waivers State
Limits North Carolina 80 hours per month and
covered only if no home health aide services are provided on the
same day Oklahomac Departmental approval is
required. Oregon Prior authorization is
required. South Dakotaa 120 hours per calendar
quarter Texas Lesser of 50 hours per
week or the rate of the average nursing facility; prior
authorization is required and a plan of treatment must be
reviewed. Utah 60 hours per month and
covered only if no home health aide services are provided on the
same day Washingtonc b West Virginia
Limited on a per-unit, per-month basis; prior authorization is
required for additional hours of care. Wisconsin
Prior authorization is required for more than 250 hours per
calendar year; housekeeping tasks are limited to one-third of the
time spent in the recipient's home. aProvide personal care
services to only the categorically needy. bNo limitation
specified. cProvide most Medicaid services to both categorically
needy and medically needy, but limit personal care services to
categorically needy. Source: Medicare and Medicaid Guide, Commerce
Clearing House, Inc. HCBS Waivers Forty-three states and the
District of Columbia provide personal care under an HCBS waiver;
24 states and the District of Columbia offer both the Medicaid PCS
benefit and one or more HCBS waivers. While HCBS waivers offer
broader opportunities to limit or target services, the
availability of national data on them is limited. The APHSA
database of HCBS waivers, however, does track waivers by target
populations and number of clients served (see table V.3). Page 76
GAO/HEHS-99-101 Severely Disabled Adults Appendix V States' Use of
Home Health, the PCS Benefit, and HCBS Waivers Table V.3: Clients
Served by Medicaid HCBS Waivers With Personal Care,
Waivers' target populationsa
Number of clients 1997 Alabama
Mentally retarded or developmentally disabled people
3,290 Aged and disabled people
6,316 Disabled people
362 Arkansas Disabled adults who are 21 to 64
60 California Mentally retarded or developmentally disabled people
who are technology-dependent
35,105 Aged and disabled people
8,314 People with HIV/AIDSb
2,792 Colorado Aged and disabled people
5,843 People with HIV/AIDS
101 Chronically mentally ill people who are over 18
79 People with traumatic brain injury
70 Developmentally disabled people who are 18 and older
c Connecticut Disabled people who are 18 to 64 and need help with
2+ ADLs c People with traumatic
brain injury who are 18 to 64
c Delaware People with HIV/AIDS-related conditions
174 District of Columbia Mentally retarded or developmentally
disabled people who are 22 and older
75 People who are 65 and older
c Florida Aged and disabled people who are 18 and older
16,943 Mentally retarded or developmentally disabled people
10,302 Aged and disabled people who are 18 and older
1,380 People with AIDS
8,000 Mentally retarded or developmentally disabled people who are
over 18
116 Elderly people
c Georgia Aged and disabled people
16,500 Mentally retarded or developmentally disabled people
2,109 Disabled adults who are 24 to 64d
121 (continued) Page 77
GAO/HEHS-99-101 Severely Disabled Adults Appendix V States' Use of
Home Health, the PCS Benefit, and HCBS Waivers Waivers' target
populationsa Number of
clients Hawaii Mentally retarded or developmentally disabled
people 512 Aged and disabled
people
338 People with AIDS/ARCe
104 Iowa People with HIV/AIDS
29 Mentally retarded people (including children)
4,530 People with traumatic brain injury who are 30 to 64
30 Mentally retarded or developmentally disabled people and
mentally retarded children with disabilities
374 Elderly people
2,236 Idaho Aged and disabled people 21 and older
1,429 Mentally retarded or developmentally disabled people 21 and
older
415 Illinois Disabled people
12,021 People with HIV/ARC/AIDS
984 Mentally retarded or developmentally disabled adults
5,224 People who have been disabled by an acquired traumatic brain
injury
c Indiana Aged and disabled people
2,467 Mentally retarded people and those with related conditions
1,201 Kansas Aged and disabled people
3,150 Physically disabled people who are 16 to 64
1,880 People with traumatic brain injuryd
160 Kentucky Aged and disabled people
11,500 Adults and children with traumatic brain injury
c Louisiana Mentally retarded or developmentally disabled people
2,095 People with loss of sensory motor function
103 Aged and disabled people
222 Maryland Mentally retarded or developmentally disabled people
3,600 Maine Elderly people
554 (continued) Page 78
GAO/HEHS-99-101 Severely Disabled Adults Appendix V States' Use of
Home Health, the PCS Benefit, and HCBS Waivers Waivers' target
populationsa Number of
clients Physically disabled people
204 Disabled people who are 18 to 60
13 People with traumatic brain injury
c Michigan Aged and elderly people
2,804 Minnesota Elderly people
6,582 Mentally retarded people and those with related conditions
5,657 Disabled people under 65
2,751 People with acquired traumatic brain injury
290 Missouri Mentally retarded or developmentally disabled people
5,860 People with HIV/AIDS
140 Disabled people and developmentally disabled people who are 21
to 64d
c Mississippi Disabled people who are 21 to 64
100 Mentally retarded or developmentally disabled people
325 Montana Aged and disabled people
1,158 Mentally retarded or developmentally disabled people
652 North Carolina Mentally retarded or developmentally disabled
people 3,201 North Dakota Mentally
retarded or developmentally disabled people
1,792 Aged and disabled people
366 People with traumatic brain injury who are 18 to 64
9 New Hampshire Mentally retarded or developmentally disabled
people 1,303 People with acquired
traumatic brain injury who are 22 and olderd
27 New Jersey Mentally retarded or developmentally disabled people
5,242 People 18 to 65 who incurred traumatic brain injury after
age 16d
153 New Mexico People with AIDS/ARC
60 Aged and disabled people
1,200 Mentally retarded or developmentally disabled people
1,500 (continued) Page 79
GAO/HEHS-99-101 Severely Disabled Adults Appendix V States' Use of
Home Health, the PCS Benefit, and HCBS Waivers Waivers' target
populationsa Number of
clients Nevada Frail elderly people 65 and older
898 Elderly people in group care
72 Ohio Aged and disabled people
17,000 Aged and disabled people under 60
3,904 Mentally retarded or developmentally disabled people
2,512 Mentally retarded or developmentally disabled people 18 and
over
c Oregon Aged and disabled people
19,471 Pennsylvania Physically disabled people
c Elderly people
675 Rhode Island Elderly people 65 and over
600 Physically disabled peopled
80 South Carolina Aged and disabled people
7,658 People with HIV/AIDS
637 Mentally retarded people and those with related conditions
2,288 People with traumatic brain injury and spinal cord injury
161 Adults who are technology-dependent (ventilator-dependent)d
27 South Dakota People 18 and over who are quadriplegic
39 Tennessee Aged and disabled people
306 Mentally retarded or developmentally disabled people
2,200 Aged and disabled people
150 Texas Aged and disabled people
9,945 Aged and disabled people 21 and older
c Utah Physically disabled people
c Virginia Aged and disabled people
7,442 Mentally retarded and developmentally disabled people
1,685 Aged and disabled people 18 and over
c People with HIV/AIDS who are symptomatic
636 (continued) Page 80
GAO/HEHS-99-101 Severely Disabled Adults Appendix V States' Use of
Home Health, the PCS Benefit, and HCBS Waivers Waivers' target
populationsa
Number of clients Chronically ill children with traumatic brain
injury and adults with traumatic brain injuryd
178 Vermont Mentally retarded people and those with related
conditions 1,419 Aged and
disabled people
780 Washington Aged and disabled people
17,013 Mentally retarded or developmentally disabled people
c Developmentally disabled people who are inappropriately placed
c People with HIV/AIDS
69 People with traumatic brain injuryd
16 Wisconsin Aged and disabled people
10,670 People who are developmentally disabled
6,936 Mentally retarded and developmentally disabled people
90 Wyoming Developmentally disabled people
611 Aged and disabled people
700 Total 118 waivers
331,467 aOnly HCBS waivers offering personal care or attendant
care to adults were included in our state analysis of HCFA waivers
and auxiliary services. bHuman immunodeficiency virus/acquired
immunodeficiency syndrome. cData not reported in the APHSA Summary
of 1915 (c) HCBS waivers. dHCBS waivers considered Model Waivers
under the Medicaid program. eAIDS-related complex. Source: APHSA.
Page 81 GAO/HEHS-99-
101 Severely Disabled Adults Appendix VI Cash and Counseling
Demonstration and Evaluation The Cash and Counseling Demonstration
and Evaluation (CCDE) project represents one of the first
systematic evaluations of consumer-directed personal care.
Sponsored by the Robert Wood Johnson Foundation, in cooperation
with the Department of Health and Human Services, Office of the
Assistant Secretary for Planning and Evaluation, the CCDE is
expected to evaluate the advantages and disadvantages of offering
consumers the choice of receiving personal care services under
Medicaid via a direct cash allowance in lieu of state payments to
service providers. The University of Maryland Center on Aging is
directing and coordinating the demonstration, overseeing the
evaluation, and providing technical assistance to the
demonstration states-Arkansas, Florida, New Jersey, and New York.
Uniform The CCDE has established a rigorous experimental
protocol. The research Requirements questions seek to
identify whether there are significant differences between
interested consumers who are randomly assigned to receive cash
allowances and those with agency-delivered services in the
following areas: * types and amounts of services, * program and
administrative costs, and * consumer satisfaction and quality of
care. Additionally, the CCDE plans to identify the counseling
services offered to consumers with cash payments to determine
which consumers take advantage of additional supports, such as
instruction in how to train providers and manage payroll.
Consumers will also be asked to assess the value of the counseling
services they receive under the CCDE. The evaluation will also
examine the effects of the demonstration on informal caregivers
and paid workers. The four states participating in the CCDE have
agreed to take part in a rigorous evaluation process and to enroll
at least 3,500 individuals in their programs. The manner in which
individuals enter each state's program will be the same as the
current process: individuals will continue to receive an
assessment (or reassessment) that takes into account existing
formal and informal supports, such as care regularly provided by
family members. Any unmet needs for personal assistance will be
identified and will become the basis for a care plan. Once deemed
eligible for the program, individuals will be randomly assigned to
either a control group or a Page 82
GAO/HEHS-99-101 Severely Disabled Adults Appendix VI Cash and
Counseling Demonstration and Evaluation treatment group (cash
option).44 In the control group, the consumer will receive
services as traditionally provided in each state's Medicaid
program. Those assigned to the cash option group will "cash out"
their benefits as defined by their care plans-in effect, the cost
of their service needs will be converted to a cash payment that
they will be able to use to purchase services directly. Consumers
in the cash option group will then pay caregivers directly or will
choose to have a fiscal intermediary perform the payroll
function.45 Consumers will not be required to spend all the money
on personal attendants and will be able to save some of it for
emergencies or costly items, such as environmental modifications
or assistive devices. Additionally, the demonstration will waive
Medicaid rules that prohibit the hiring of legally responsible
relatives, allowing family members to become paid caregivers.
Counseling services, which are an integral part of the CCDE, will
be offered to meet an array of needs. For example, counseling
services will help consumers decide whether to use a fiscal
intermediary or obtain training and counseling on how to be an
employer. Earlier on, the Robert Wood Johnson Foundation
contracted with Health Services Research Institute, which prepared
an employer and taxation booklet tailored to the four states.
Additional counseling services may include assisting consumers
with screening providers, finding emergency or substitute
arrangements, managing tax forms and insurance paperwork, and even
locating home modification subcontractors. Variations in
There is variation in how the four CCDE states plan to implement
this Implementing the demonstration, including their (1)
approach to personal care under Medicaid, (2) use of a fiscal
intermediary and counseling services, and CCDE (3)
outreach and enrollment efforts. Arkansas, New Jersey, and New
York are implementing the CCDE through their PCS benefit, for
which each state has slightly different service limits 44Consumers
interested in directing all aspects of their care-including cash
management-must first pass a skills test. In the event a consumer
is not totally capable of self-direction, he or she has the
opportunity to select a representative decisionmaker to act on the
consumer's behalf. 45While several models exist, a fiscal
intermediary generally manages any legal requirements associated
with the employment of the caregiver, often through payroll
management and tax filings. For a description of other
intermediary models, see Flanagan and Green, Consumer-Directed
Personal Assistance Services: Key Operational Issues for State CD-
PAS Programs Using Intermediary Service Organizations, Final
report for the Department of Health and Human Services by The
MEDSTAT Group (Washington, D.C.: Oct. 24, 1997). Page 83
GAO/HEHS-99-101 Severely Disabled Adults Appendix VI Cash and
Counseling Demonstration and Evaluation and authorization
requirements. Florida's personal care will be provided through
HCBS waivers, including one that targets elderly individuals and
those with physical disabilities and another that includes
children and adults with developmental disabilities. Both waiver
populations will participate in the CCDE evaluation. The other
three states will include a mix of older and younger adults with
physical disabilities. The four CCDE states also differ in the way
they plan to implement fiscal intermediary and counseling
services. Arkansas divided the state into four regions and asked
each to select an entity that would provide both counseling and
fiscal intermediary services. The regional selections varied and
included an area Office on Aging, a rehabilitation center, and a
center for developmental disabilities. New York, which will be the
last state to implement the CCDE, also plans to combine counseling
and fiscal intermediary services. Florida and New Jersey have
selected one organization to serve as the fiscal intermediary on a
statewide basis and separate entities to provide their counseling
services. Outreach and enrollment efforts by states reflect the
concern that all consumers have the opportunity to select a cash
option.46 In New Jersey and Arkansas, the same organizations that
provide personal care services under the CCDE also enroll
individuals for the traditional personal care benefit. Because
these organizations have a vested interest in provider-based care,
states had some concern that they might steer individuals away
from the cash option. To address this concern, Arkansas hired a
series of nurse coordinators to assist with enrollment, while New
Jersey added the enrollment activities to the contract of the
organization that had successfully handled the state's Medicaid
managed care contract. In Florida, the organizations and
individuals who provide care management services under the
traditional system will also handle outreach and counseling under
the cash option. Special care is being given to separate care
management and counseling functions. New York's plans for
enrollment and outreach had not been fully developed at the time
of our work. 46Selecting a cash option does not ensure that a
consumer gets to be a part of the cash option group, since half of
the consumers interested in cash and counseling are randomly
assigned to a control group. Page 84
GAO/HEHS-99-101 Severely Disabled Adults Appendix VI Cash and
Counseling Demonstration and Evaluation Progress to Date
The states participating in the demonstration are implementing
their programs over time. Once receiving overall approval for the
CCDE,47 Arkansas was the first to implement the demonstration and
began enrolling clients during early December 1998. New Jersey,
Florida, and New York plan to begin implementation later in 1999.
In an effort to assess consumers' preliminary interest in a cash
approach to consumer-directed personal care, the University of
Maryland Center on Aging conducted a telephone survey in the CCDE
states. Consumers were asked if they would be interested in a cash
option for personal care services. Results from these surveys
indicated an interest among consumers ranging from 32 percent in
Arkansas (from a sample of Medicaid personal care clients) to 58
percent in Florida (from a sample of participants in the state's
aging and disabled waiver program).48 Table VI.1 summarizes the
extent of consumer interest in a cash model across the four
states. Table VI.1: Consumer Interest in a Cash Model
Percentage of consumers State
interested in cash optiona Arkansas
32 Florida Physically disabled waiver
58 Developmentally disabled waiver
40 adults; 79 children New Jersey
42 New York
40 aThese percentages include both consumers answering for
themselves and surrogates answering for the consumers. In addition
to determining consumer interest in or preference for a cash
model, the survey also asked participants if they wanted
assistance or 47After the states received approval for their
projects from HCFA in early Oct. 1998, states had to obtain
waivers from the Supplemental Security Income program. Program
waivers were necessary because the demonstration allows
participants to carry funds forward month to month, which could
violate resource limits under the program. 48For more detailed
information on the Arkansas survey results, see L. Simon-
Rusinowitz and others, "Determining Consumer Preferences for a
Cash Option: Arkansas Survey Results," Health Care Financing
Review, Vol. 19, No. 2 (winter 1997). Page 85
GAO/HEHS-99-101 Severely Disabled Adults Appendix VI Cash and
Counseling Demonstration and Evaluation training for seven
different tasks associated with the cash option, including *
deciding how much to pay a worker, * managing payroll taxes, *
conducting background checks, * arranging for backup care, *
finding a caregiver, * interviewing a prospective caregiver, and *
firing a caregiver. Most consumers interested in the cash option
expressed a need for each of the supportive services. Overall,
consumers attached the most importance to deciding worker's pay,
managing the payroll and conducting background checks, and less
interest in the remainder of the tasks. Results of the telephone
survey shaped some of the design of the CCDE. In particular, 80 to
90 percent of respondents expressed interest in a fiscal
intermediary; thus, choosing an intermediary for payroll
assistance became a critical component for states' demonstrations.
Additionally, the survey showed the need for counseling services
and training, particularly among consumers who wanted assistance
with the seven tasks noted above. This result underscores the
integral role that counseling plays in the demonstration. To
provide sufficient time for consumer enrollment and experience,
the participating states will be expected to conduct their
demonstration programs for at least 24 months. Final reports on
the CCDE are expected to be available 3 years and 3 months after
the state starts its demonstration. This period of time allows for
1 year of open enrollment, 1 year of tracking consumers, and the
remaining year and 3 months for data collection and analysis.
Throughout the demonstration, however, interim reports are planned
and will be issued as they are completed. Additionally,
researchers will conduct a series of in-depth, qualitative
interviews intended to provide a snapshot of the individual's
experience with the cash option. A demonstration researcher
indicated that there may be 25 qualitative interviews per state,
which will primarily involve the consumer, principal family
member, paid caregiver, and a counselor. Page 86
GAO/HEHS-99-101 Severely Disabled Adults Appendix VII Major
Contributors to This Report Walter Ochinko, Assistant Director,
(202) 512-7157 Carolyn Yocom Rashmi Agarwal Jerry Baugher Karen
Doran Richard Hegner JoAnn Martinez Elsie Picyk Mary Reich
(101727) Page 87 GAO/HEHS-
99-101 Severely Disabled Adults Ordering Information The first
copy of each GAO report and testimony is free. Additional copies
are $2 each. Orders should be sent to the following address,
accompanied by a check or money order made out to the
Superintendent of Documents, when necessary. VISA and MasterCard
credit cards are accepted, also. Orders for 100 or more copies to
be mailed to a single address are discounted 25 percent. Orders by
mail: U.S. General Accounting Office P.O. Box 37050 Washington, DC
20013 or visit: Room 1100 700 4th St. NW (corner of 4th and G Sts.
NW) U.S. General Accounting Office Washington, DC Orders may also
be placed by calling (202) 512-6000 or by using fax number (202)
512-6061, or TDD (202) 512-2537. Each day, GAO issues a list of
newly available reports and testimony. To receive facsimile
copies of the daily list or any list from the past 30 days, please
call (202) 512-6000 using a touchtone phone. A recorded menu will
provide information on how to obtain these lists. For information
on how to access GAO reports on the INTERNET, send an e-mail
message with "info" in the body to: [email protected] or visit
GAO's World Wide Web Home Page at: http://www.gao.gov PRINTED ON
RECYCLED PAPER United States General Accounting Office
Bulk Rate Washington, D.C. 20548-0001 Postage & Fees Paid GAO
Permit No. G100 Official Business Penalty for Private Use $300
Address Correction Requested
*** End of document. ***