A CRS Review of 10 States: Home and Community-Based Services — States Seek to Change the Face of Long-Term Care: Illinois

A CRS Review of 10 States: Home and Community-Based Services — States Seek to Change the Face of Long-Term Care: Illinois

Order Code RL32010
CRS Report for Congress
Received through the CRS Web
A CRS Review of 10 States:
Home and Community-Based Services — States
Seek to Change the Face of Long-Term Care:
Illinois
June 1, 2003
Jane Tilly
Consultant
Domestic Social Policy Division
Carol O’Shaughnessy
Specialist in Social Legislation
Domestic Social Policy Division
Robert Weissert
Research Assistant
Domestic Social Policy Division
Congressional Research Service ˜ The Library of Congress

A CRS Review of 10 States:
Home and Community-Based Services — States Seek
to Change the Face of Long-Term Care: Illinois
Summary
Demographic challenges posed by the growing elderly population and demands
for greater public commitment to home and community-based care for persons with
disabilities of all ages have drawn the attention of federal and state policymakers for
some time. Spending on long-term care by both the public and private sectors is
significant. In 2001, spending for long-term care services for persons of all ages
represented 12.2% of all personal health care spending in 2001 (almost $152 billion
of $1.24 trillion). Federal and state governments accounted for almost two-thirds of
all spending. By far, the primary payor for long-term care is the federal-state
Medicaid program, which paid for almost half of all long-term care spending in 2001.
Many states have devoted significant efforts to respond to the desire for home
and community-based care for persons with disabilities and their families.
Nevertheless, financing of nursing home care, chiefly by Medicaid, still dominates
most states’ spending for long-term care today. To assist Congress understand issues
that states face in providing long-term care services, the Congressional Research
Service (CRS) undertook a study of 10 states in 2002. This report, one of a series of
10 state reports, presents background and analysis about long-term care in Illinois.
Illinois is the fifth largest state in the country with 12.4 million people in 2000;
the population increased by almost 9% or about one million people in the past
decade. About 12% of the state’s population is age 65 and older — 1.5 million
people in 2000. By 2025 the Illinois elderly population is expected to increase by
over 50% and will be 16.6% of the state’s total population.
Illinois is one of the few states in the country that provides older persons and
younger adults, who meet the eligibility criteria, with state entitlements to home and
community-based long-term care services. Both entitlements resulted from court
cases that were brought to eliminate waiting lists for services. The state funds the
Community Care Program for older adults and the Home Services Program for
persons with physical disabilities with a combination of state general revenue funds
and Medicaid Section 1915(c) waiver funds. The Community Care Program uses
contracted agencies for the provision of homemaker, adult day care services, and case
management services. In contrast, the Home Services Program’s relies primarily on
personal assistants, whom consumers supervise, to provide services.
According to state officials, in 2002 the state had about 3,000 people with
developmental disabilities in state-operated development centers (SODCs), 6,500
people in private intermediate care facilities for the mentally retarded (ICFs/MR) and
8,800 people in Section 1915(c) Medicaid home and community-based services
waivers for the developmentally disabled.
The 10-state study was funded in part by grants from the Jewish Healthcare
Foundation and the U.S. Department of Health and Human Services, Health
Resources and Services Administration, Office of Rural Health Policy.

Contents
Preface . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
Introduction: Federal Legislative Perspective . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
A CRS Review of Ten States: Report on Illinois . . . . . . . . . . . . . . . . . . . . . . . . . 4
Summary Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
Demographic Trends . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
Administration of Long-Term Care Programs . . . . . . . . . . . . . . . . . . . . . . . . 4
Trends in Institutional Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
Trends in Home and Community-Based Services . . . . . . . . . . . . . . . . . . . . . 5
Long-Term Care Spending . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
Issues in Financing and Delivery of Long-Term Care Services . . . . . . . . . . . 5
Demographic Trends . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Administration of Long-Term Care Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
Illinois Long-Term Care Services for the Elderly and Persons with Disabilities
. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
Trends in Institutional Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
Trends in Home and Community-Based Care . . . . . . . . . . . . . . . . . . . . . . . 10
The Community Care Program for Persons Age 60 and Over: State
Entitlement and Medicaid 1915(c) Waiver . . . . . . . . . . . . . . . . . 11
Home Services Program and Other Services for Younger Adults with
Disabilities: State Entitlement and 1915(c) Waiver . . . . . . . . . . 12
Other Medicaid Section 1915(c) Waivers . . . . . . . . . . . . . . . . . . . . . . 12
Illinois Long-Term Care Services for Persons with Mental Retardation and
Developmental Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
Trends in Institutional Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14
Trends in Home and Community-Based Care . . . . . . . . . . . . . . . . . . . . . . . 16
Financing of Long-Term Care in Illinois . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16
Medicaid Spending in Illinois . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16
Medicaid Long-Term Care Spending in Illinois . . . . . . . . . . . . . . . . . . . . . 18
Medicaid and State Spending on Services for Persons with Mental Retardation
or Developmental Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23
Issues in Long-Term Care in Illinois . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24
State Entitlement and Maximization of Federal Medicaid Dollars . . . 24
Budget Cuts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25
Certification and Licensing of Facilities . . . . . . . . . . . . . . . . . . . . . . . 25
Labor Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26
Consumer Direction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26
Lack of Adequate Supported Housing . . . . . . . . . . . . . . . . . . . . . . . . . 26

Appendix 2. Large State MR/DD Facilities, 1960-2001, Including Facility
Population, Per Diem Expenditure, and Closures (IL) . . . . . . . . . . . . . . . . 34
Appendix 3. About the Census Population Projections . . . . . . . . . . . . . . . . . . . 35
Additional Reading . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36
List of Figures
Figure 1. Percent Population Increase in Illinois, 2000-2025 . . . . . . . . . . . . . 7
Figure 2. Institutional and Home and Community-Based Services as a Percent
of Medicaid Long-Term Care Spending in Illinois, 1990-2001 . . . . . . . 20
Figure 3. Medicaid Long-Term Care Spending by Category in Illinois,FY1990-
FY2001
(in constant 2001 dollars) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21
Figure 4a. Medicaid Long-Term Care Spending in Illinois, by Category,
FY1990 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22
Figure 4b. Medicaid Long-Term Care Spending in Illinois, by Category,
FY2001 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22
Figure 5. Medicaid Home and Community-Based Services Waiver Spending by
Target Population in Illinois, FY2001 . . . . . . . . . . . . . . . . . . . . . . . . . . . 23
List of Tables
Table 1. Illinois Population Age 65 and Older, 1990 and 2000 . . . . . . . . . . . . . . 6
Table 2. Elderly Population as a Percent of Total Population, Illinois and the United
States, 2025 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
Table 3. Nursing Home Characteristics in Illinois and the United States . . . . . . 10
Table 4. Persons with Mental Retardation and Developmental Disabilities Served
in Residential Settings, by Size of Setting, 1990, 1995, and 2000 . . . . . . . 15
Table 5. Share of Total Spending by Category, Illinois and the United States, 1990-
2001 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17
Table 6. State Spending for Medicaid from State Funds as a Percent of State
Spending, Illinois and the United States,1990-2001 . . . . . . . . . . . . . . . . . . 18
Table 7. Medicaid Long-Term Care Spending in Illinois, FY1990-FY2001 . . . 19
Table 8. Medicaid Spending in Illinois, Total Spending and Long-Term Care
Spending, by Category, and Percent Change, FY1990-FY2001 in Constant 2001
Dollars . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20
Table 9. Federal and State Spending for Institutional and Community Services for
Persons with Mental Retardation/Developmental Disabilities in Illinois, 1990
and 2000 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24
Appendix 1. Major Home and Community-Based Long-Term Care Programs for the
Elderly and Persons with Disabilities in Illinois . . . . . . . . . . . . . . . . . . . . . 28

Acknowledgments
CRS wishes to acknowledge the generous time and contributions of the many
state officials and stakeholders who provided information on long-term care services
in Illinois. Without their generous time and invaluable experience and insight, this
report would not be possible. We would particularly like to thank officials from the
Department of Public Aid, the Department on Aging, and the Department of Human
Services. We would also like to thank the advocates and providers who offered
valuable perspectives on the long-term care system in Illinois.
The authors also gratefully acknowledge the excellent assistance of Rashelle
Butts in the production of this report.

Preface
Demographic challenges posed by the growing elderly population and demands
for greater public commitment to home and community-based care for persons with
disabilities have drawn the attention of federal and state policymakers for some time.
Spending on long-term care by both the public and private sectors is significant. In
2001, spending for long-term care services for persons of all ages represented 12.2%
of all personal health care spending (almost $152 billion of $1.24 trillion). Federal
and state governments accounted for almost two-thirds of all spending. By far, the
primary payor for long-term care is the federal-state Medicaid program, which paid
for almost half of all U.S. long-term care spending in 2001.
Federal and state Medicaid spending for long-term care in FY2001 was about
$75 billion, representing over one-third of all Medicaid spending. Over 70% of
Medicaid long-term care spending was for institutions — nursing homes and
intermediate care facilities for the mentally retarded (ICFs/MR). Many believe that
the current federal financing system paid through Medicaid is structurally biased in
favor of institutional care. State governments face significant challenges in
refocusing care systems, given the structure of current federal financing. Many states
have devoted significant efforts to change their long-term care systems to expand
home and community-based services for persons with disabilities and their families.
Nevertheless, financing of nursing home care — primarily through the Medicaid
program — still dominates most states’ spending on long-term care today.
While some advocates maintain that the federal government should play a larger
role in providing support for home and community-based care, Congress has not yet
decided on whether or how to change current federal policy. One possibility is that
Congress may continue an incremental approach to long-term care, without major
federal policy involvement, leaving to state governments the responsibility for
developing strategies that support home and community-based care within existing
federal funding constraints and program rules.
To help Congress review various policy alternatives and to assist policymakers
understand issues that states face in development of long-term care services, the
Congressional Research Service (CRS) undertook a study of 10 states in 2002. The
research was undertaken to look at state policies on long-term care as well as trends
in both institutional and home and community-based care for persons with
disabilities (the elderly, persons with mental retardation, and other adults with
disabilities). The research included a review of state documents and data on long-
term care, as well as national data sources on spending. CRS interviewed state
officials responsible for long-term care, a wide range of stakeholders and, in some
cases, members or staff of state legislatures.
The 10 states included in the study are: Arizona, Florida, Illinois, Indiana,
Louisiana, Maine, Oklahoma, Oregon, Pennsylvania, and Texas. States were chosen
according to a number of variables, including geographic distribution, demographic
trends, and approaches to financing, administration and delivery of long-term care
services.
This report presents background and analysis about long-term care in Illinois.
Reports on the other nine states and an overview report will be available during 2003.

A CRS Review of 10 States:
Home and Community-Based Services —
States Seek to Change the Face of Long-
Term Care: Illinois
Introduction: Federal Legislative Perspective
States choosing to modify their
The Social Security Amendments of 1965,
programs for long-term care face
which created the Medicaid program,
significant challenges. Financing of
required states to provide skilled nursing
nursing home care has dominated long-
facility services under their state Medicaid
term care spending for decades. The
plans, and gave nursing home care the same
level of priority as hospital and physician
federal financing structure that created
services.
incentives to support institutional care
reaches back to 1965. A number of
“Section 1902 (a) A State plan for medical
converging factors have supported
assistance must provide for inclusion of some
reliance on nursing home spending.
institutional and some noninstitutional care
and services, and, effective July 1, 1967,
Prior to enactment of Medicaid, homes
provide (A) for inclusion of at least ... (1)
for the aged and other public institutions
inpatient hospital services ...; (2) outpatient
were financed by a combination of direct
hospital services; (3) other laboratory and X-
payments made by individuals with their
ray services; (4) skilled nursing home services
(other than services in an institution for
Social Security Old Age Assistance
tuberculosis or mental diseases) for
(OAA) benefits, and vendor payments
individuals 21 years of age or older; (5)
made by states with federal matching
physicians’ services ....”; P.L. 89-97, July 30,
payments on behalf of individuals. The
1965.
Kerr-Mills Medical Assistance to the
Aged (MAA) program, enacted in 1960,
a predecessor to Medicaid, allowed states to provide medical services, including
skilled nursing home services, to persons who were not eligible for OAA cash
payments, thereby expanding the eligible population.1
In 1965, when Kerr-Mills was transformed into the federal-state Medicaid
program, Congress created an entitlement to skilled nursing facility care under the
expanded program. The Social Security Amendments of 1965 required that states
provide skilled nursing facility services and gave nursing home care the same level
of priority as hospital and physician services. Amendments in 1967 allowed states
to provide care in “intermediate care facilities” (ICFs) for persons who did not need
skilled nursing home care, but needed more than room and board. In 1987, Congress
1 CRS Report 83-181, Nursing Home Legislation: Issues and Policies, by Maureen Baltay
(available through CRS authors of this report).

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eliminated the distinction between skilled nursing facilities and intermediate care
facilities (effective in 1990). As a result of these various amendments, people
eligible under the state’s Medicaid plan are entitled to nursing home facility care; that
is, if a person meets the state’s income and asset requirements, as well as the state’s
functional eligibility requirements for entry into a nursing home, he or she is entitled
to the benefit.
These early legislative developments were the basis for the beginnings of the
modern day nursing home industry. Significant growth in the number of nursing
homes occurred during the 1960s — from 1960 to 1970, the number of homes more
than doubled, from 9,582 to almost 23,000, and the number of beds more than
tripled, from 331,000 to more than one
million.2 (Today there are about 17,000
Since its inception, Medicaid has been the
nursing homes with 1.8 million beds.3)
predominant payor for nursing home care. In
1970, over $1 billion was spent on nursing
During the latter part of the 1960s
home care through Medicaid and Medicare.
Federal and state Medicaid payments
and the 1970s, nursing home care
accounted for almost all of this spending —
attracted a great deal of congressional
87%. Medicaid spending for nursing home
oversight as a result of concern about
care grew by 50% in the three-year period
increasing federal expenditures, and a
beginning in 1967.
pattern of instances of fraud and abuse
In FY2001, Medicaid spent $53.1 billion on
that was becoming evident. Between
institutional care (for nursing homes and care
1969 and 1976, the Subcommittee on
in intermediate care facilities for the mentally
Long-Term Care of the Senate Special
retarded).
Committee on Aging, held 30 hearings
on problems in the nursing home
industry.4
Home care services received some congressional attention in the authorizing
statute — home health care services were one of the optional services that states
could provide under the 1965 law. Three years later in 1968, Congress amended the
law to require states to provide home health care services to persons entitled to
skilled nursing facility care as part of their state Medicaid plans (effective in 1970).
During the 1970s, the Department of Health, Education and Welfare (now Health and
Human Services, DHHS) devoted attention to “alternatives to nursing home care”
through a variety of federal research and demonstration efforts. These efforts were
undertaken not only to find ways to offset the high costs of nursing facility care, but
also to respond to the desires of persons with disabilities to remain in their homes and
2 U.S. Congress, Senate Special Committee on Aging, Developments in Aging, 1970,
Report 92-46, Feb. 16, 1970, Washington, cited from the American Nursing Home
Association Fact Book, 1969-1970.
3 American Health Care Association, Facts and Trends 2001, The Nursing Facility
Sourcebook, 2001, Washington. The number of nursing homes is for 1999-2000 and number
of beds is for 1998. (Hereafter cited as American Health Care Association, The Nursing
Facility Sourcebook.)
4 U.S. Congress, Senate Special Committee on Aging, Nursing Home Care in the United
States: Failure of Public Policy, Washington, 1974, and supporting papers published in
succeeding years.

CRS-3
in community settings, rather than in institutions. However, it was not until 1981 that
Congress took significant legislative action to expand home and community-based
services through Medicaid when it authorized the Medicaid Section 1915(c) home
and community-based waiver program.
Under that authority (known then as the Section 2176 waiver program), the
Secretary of DHHS may waive certain Medicaid state plan requirements to allow
states to cover a wide range of home and community-based services to persons who
otherwise meet the state’s eligibility requirements for institutional care. The waiver
provision was designed to alter the fact that the Medicaid program had emphasized
institutional care rather than care in home and community-based settings. Services
under the Section 1915(c) waiver include: case management, personal care,
homemaker, home health aide, adult day care, habilitation, environmental
modifications, among many others.5 These services are covered as an option of
states, and under the law, persons are not entitled to these services as they are to
nursing facility care. Moreover, states are allowed to set cost caps and limits on the
numbers and types of persons to be served under their wavier programs.
Notwithstanding wide use of the Section 1915(c) waiver authority by states over
the last 2 decades, total spending for Medicaid home and community-based services
waivers is significantly less than institutional care — about $14.4 billion in 2001,
compared to $53.1 billion for nursing facility care services and care for persons with
mental retardation in intermediate care facilities (ICFs/MR). Despite this disparity
in spending, in many states the Section 1915(c) waiver program is the primary source
of financial support for a wide range of home and community-based services, and
funding has been increasing steadily. Federal and state Medicaid support for the
waiver programs increased by over 807% from FY1990 to FY2001 (in constant 2001
dollars).
The home and community-based waiver program has been a significant source
of support to care for persons with mental retardation and developmental disabilities
as states have closed large state institutions for these persons over the last 2 decades.
Nationally, in FY2001, almost 75% of Section 1915(c) waiver funding was devoted
to providing services to these individuals.
States administer their long-term care programs against this backdrop of federal
legislative initiatives — first, the entitlement to nursing home care, and requirement
to provide home health services to persons entitled to nursing home care, and,
second, the option to provide a wide range of home and community-based services
through waiver of federal law, within state-defined eligibility requirements, service
availability, and limits on numbers of persons served.
5 States may waive the following Medicaid requirements: (1) statewideness — states may
cover services in only a portion of the state, rather than in all geographic jurisdictions; (2)
comparability of services — states may cover state-selected groups of persons, rather than
all persons otherwise eligible; and (3) financial eligibility requirements — states may use
more liberal income requirements for persons needing home and community-based waiver
services than would otherwise apply to persons living in the community. For further
information, see CRS Report RL31163, Long-Term Care: A Profile of Medicaid 1915(c)
Home and Community-Based Services Waivers, by Carol O’Shaughnessy and Rachel Kelly.

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A CRS Review of Ten States: Report on Illinois
Summary Overview6
Demographic Trends
! Illinois is the fifth largest state in the country with 12.4 million
people in 2000; the population increased by almost 9% or about one
million people in the past decade. About 12% of the state’s
population is age 65 and older — 1.5 million people in 2000. The
state’s older population grew relatively slowly during the 1990s —
by 4.4%. However, those most in need of long-term care — the
population age 85 and older — grew by 30.1% during the same time
period. By 2025, the population age 65 or older is expected to
increase by 50.6%
Administration of Long-Term Care Programs
! Administration and operation of long-term care services for the frail
elderly population and other adults with disabilities is spread among
four state agencies. The Department of Public Aid (DPA) is the
single state agency for the Medicaid program. The Department on
Aging (DOA) administers the Community Care Program combining
a state-funded entitlement and a Medicaid Section 1915(c) waiver to
provide home and community-based services to persons age 60 and
older. The Department of Human Services (DHS) operates the four
Section 1915(c) waivers that serve the adult populations with
physical and developmental disabilities. The Department of Public
Health enforces health and safety standards for long-term care
providers.
Trends in Institutional Care
! In 2000, Illinois had 873 nursing facilities with 107,800 beds, with
an occupancy rate of 84.5%. The state has undertaken several
efforts to decrease its reliance on nursing homes, which include pre-
admission screening for nursing home applicants and efforts to
return residents to community settings.
! According to state officials, the state has about 3,000 people with
developmental disabilities in state-operated developmental centers
(SODC), 6,500 people in private intermediate care facilities for the
mentally retarded (ICFs/MR), and 8,800 people in Section 1915(c)
Medicaid home and community-based services waivers. The costs
6 Information based on Illinois data and documents, national data, and interviews with state
officials. This report does not discuss programs for persons with mental illness. It also
generally excludes discussion of programs for infants and children with disabilities, other
than those serving persons with mental retardation and developmental disabilities.

CRS-5
of care for these groups are approximately $300 million, $400
million, and $300 million respectively. The annual average cost for
a resident of an SODC is about $90,000 and for a private ICF/MR
the cost is about $45,000 for 24-hour care.
Trends in Home and Community-Based Services
! Each population with disabilities (persons age 60 and over, those
with physical disabilities and those with developmental disabilities)
must access services through a separate screening and assessment
process. Illinois does not have a single-point-of-entry for home and
community-based services.
! Illinois is one of the few states in the country that provide older
persons and younger adults, who meet the eligibility criteria, with a
state entitlement to home and community-based services. Both
entitlements resulted from court cases that were brought to eliminate
waiting lists for services. The state funds the Community Care
Program for older adults and Home Services Program for the
physically disabled with a combination of Medicaid Section 1915(c)
waivers and state funds. State general revenue funds are used to pay
for services and then Medicaid reimbursement is claimed for
Medicaid eligible individuals.
! The state has a Section 1915(c) Medicaid waiver called the Home
and Community-Based Services Waiver for Adults with
Developmental Disabilities, which provides care at home or in group
residential settings of eight or fewer people.
Long-Term Care Spending
! Long-term care spending represented 31.3% of all Medicaid
expenditures ($2.5 billion out of $8.1 billion) in Illinois in FY2001
a substantial decrease from 42.9% in FY1990. Institutional care
accounted for about 88 of all long-term care spending in FY2001.
! Spending on institutional care decreased as a percentage of all
Medicaid long-term care expenditures from FY1990 to FY2001.
This reduction was due, in part, to the state’s decreased reliance on
intermediate care facilities for the mentally retarded (ICFs/MR).
During the same time period, nursing home care as a portion of
Medicaid long-term care spending decreased only slightly.
! In FY2001, home and community-based services accounted for 4.5%
of all Medicaid spending and 14.4% of all Medicaid long-term care
spending. Increases in funding for Medicaid Section 1915(c)
waivers were largely responsible for the increase in Medicaid
spending on home and community-based services.

CRS-6
Issues in Financing and Delivery of Long-Term Care Services
! Illinois recently began maximizing use of Medicaid under its two
entitlement programs — Community Care and Home Services — by
requiring applicants and current program beneficiaries to apply for
Medicaid. According to interviewees, some people have refused to
apply for Medicaid and have dropped out of the programs.
! According to state officials, State Fiscal Year (SFY) 2002 revenue
was about $400 million below what had been projected in the
summer of 2002. At the time of the site visit in summer of 2002, the
state planned no eligibility or service cuts in response to the budget
crisis. However, the state planned to reduce payments to most
Medicaid providers, except those providing home and community-
based waiver services.
! Some interviewees asserted that Medicaid provider payment cuts
would exacerbate the state’s long-term care labor shortage because
providers will have to cut workers’ wages and benefits, thus making
the jobs less attractive. These interviewees said that quality of care
could suffer as a result.
Demographic Trends
Illinois is the fifth largest state in the country with 12.4 million people in 2000;
the population increased by 8.6% or about one million people in the past decade.
About 12% of the state’s population is age 65 and older — 1.5 million people in
2000. The state’s older population is growing relatively slowly; it rose 4.4% during
the 1990s. Those most in need of long-term care — the population age 85 and older
— grew by 30.1% during the same time period (see Table 1).
Table 1. Illinois Population Age 65 and Older, 1990 and 2000
2000 pop.
1990
2000
rank in
Percent
Percent
Percent
U.S.
of total
of total
change
(based on
Age
Number
pop.
Number
pop.
1990-2000
percent)
65+
1,436,545
12.6%
1,500,025
12.1%
4.4%
32nd
65-74
821,940
7.2%
772,247
6.2%
-6.0%
40th
75-84
467,056
4.1%
535,747
4.3%
14.7%
31st
85+
147,549
1.3%
192,031
1.5%
30.1%
25th
Under 65
9,994,057
87.4%
10,919,268
87.9%
9.3%
18th
Total pop.
11,430,602
100%
12,419,293
100%
8.6%
5th
Source: U.S. Census Bureau, Profile of General Demographics for Illinois: 1990. 2000:
[http://www.census.gov/census2000/states/il.html]. Numbers may not sum to 100 due to rounding.

CRS-7
Illinois, along with the rest of the country, will experience large increases in its
older population over the next 25 years. By 2025, its elderly population will have
increased by 50.6% (Figure 1). In 2025, 16.6% of Illinois’ population will be age
65 years or older, compared to 18.5% for the nation (Table 2). Illinois will have to
address the long-term care needs of 2.2 million elderly in that year, 267,947 of whom
will be age 85 or older.
Figure 1. Percent Population Increase in Illinois, 2000-2025
60%
50%
40%
30%
20%
10%
0%
2005
2010
2015
2020
2025
85+
65+
Total Population
Under 65
Source: CRS calculations based on data from the U.S. Census Bureau. Projections:
[http://www.census.gov/population/www/projections/st_yrby5.html]; analyzed data from State
Population Projections: Every Fifth Year.
Table 2. Elderly Population as a Percent of Total Population,
Illinois and the United States, 2025
Proportion of total pop.
Proportion of total pop.
Age
in 2025 in Illinois
in 2025 in US
65+
16.6%
18.5%
65-74
9.4%
10.5%
75-84
5.2%
5.8%
85+
2.0%
2.2%
Under 65 pop.
83.4%
81.5%
Source: CRS calculations based on data from the U.S. Census Bureau. Projections
[http://www.census.gov/population/www/projections/st_yrby5]; analyzed data from State Populations
Projections: Every Fifth Year.

CRS-8
Administration of Long-Term Care Programs
Four state agencies share responsibility for oversight and operation of long-term
care services for the frail elderly population and other adults with disabilities. The
Department of Public Aid (DPA) is the single state agency for the Medicaid program.
DPA has interagency agreements with: the Department on Aging (DOA), which
operates the Section 1915(c) home and community-based waiver serving older
persons, and the Department of Human Services (DHS), which operates the four
Section 1915(c) waivers that serve the adult populations with physical and
developmental disabilities. The Department of Public Health (DPH) enforces health
and safety standards for long-term care providers.
Within DPA, the Bureau of Interagency Coordination monitors DOA and DHS’
program operations related to the waivers. The Bureau of Program Reimbursement
and Analysis monitors these Departments’ financial performance. Through its
Bureau of Long Term Care, DPA also operates the Supportive Living Program
waiver, which funds assisted living services.
The DOA has a Division of Long-Term Care that administers the Community
Care Program, which combines a state-funded entitlement and a Medicaid Section
1915(c) waiver to provide home and community-based services to persons age 60 and
older. DOA also conducts universal pre-admission screening (PAS) for all persons
age 60 and older applying to enter nursing homes. Universal PAS began in 1996; it
screened approximately 65,000 individuals in FY2001, according to state officials.
The Community Care Program contracts with approximately 50 Case
Coordination Units that DOA identifies in conjunction with 13 local Area Agencies
on Aging (AAAs). Case Coordination Units’ case managers evaluate the need for
long term care services using a standardized needs assessment instrument — the
Determination of Need. Community referrals and all nursing facility applicants are
evaluated prior to admission and, if eligible, are offered the option of using in-home
and other community-based services. In addition to initial intake and assessment
responsibilities, case coordination unit case managers write plans of care, arrange for
the implementation of Community Care Program services, perform re-determinations
of need (at least annually), and provide ongoing case management to program
beneficiaries. Case Coordination Units are typically not-for-profit agencies or a
governmental entity, such as a local public health department. These units cannot
deliver services in the same areas in which they provide assessment and case
management services.
The Department of Human Services (DHS) has two offices involved in long-
term care. DHS’ Office of Rehabilitation Services administers three Section 1915(c)
waivers for persons with physical disabilities, brain injury, and HIV/AIDS. This
Office also administers the Home Services Program, which incorporates state
entitlement funds and a Section 1915(c) waiver to serve younger adults (i.e., age 18-
59) with physical disabilities. DHS’ Office of Developmental Services manages the
Section 1915(c) waiver for adults with mental retardation or developmental
disabilities (MR/DD).

CRS-9
The Home Services Program is a consumer-directed program where most
beneficiaries hire, supervise, and fire their own personal assistants. While the
beneficiary is the personal assistant’s employer, DHS is the fiscal agent with
responsibility for issuing checks to workers, as well as withholding FICA and other
deductions for the personal assistants. DHS’ local field offices determine financial
eligibility for the Home Services Program. Centers for Independent Living (CILs),7
which are staffed by persons with disabilities, recruit and train personal assistants and
provide training to beneficiaries on how to manage their assistants. The Centers also
perform some case management when people leave institutions, through a pilot
project that allows consumers to move from nursing homes to community integrated
settings. The Centers take applications from residents of institutions, determine
eligibility for the Home Services Program, and arrange services until the former
residents can handle these tasks on their own.
DHS’ Office of Developmental Disabilities contracts with 354 community
service providers and operates 11 state-operated developmental centers (SODCs).8
The Office also contracts with 18 pre-admission screening organizations to conduct
screening for people with developmental disabilities seeking access to home and
community-based services, or to Medicaid-funded residential settings, including
ICFs/MR, SODCs, and nursing facilities. Pre-admission screening organizations
conduct assessments in persons’ homes, make eligibility determinations, facilitate
choice of services and providers, make referrals to providers, and monitor services
for the first month beneficiaries receive them.
The Office of Developmental Disabilities also administers a Medicaid Section
1915(c) waiver for persons with developmental disabilities. The Office recently
merged its state-funded Home-Based Support Services program with the waiver to
draw down federal Medicaid matching funds. Each waiver beneficiary receives
Individual Service and Support Advocacy, which involves quarterly monitoring visits
to beneficiaries, participation in service plan development, education about
individual rights, and problem resolution.
The Illinois Department of Public Health administers the state and federal
regulations governing the quality of long term care facilities, residential health care
facilities for the mentally retarded, and assisted living facilities (ALFs). The majority
of the Department of Public Health’s workload involves the state and federal surveys
and investigations mandated by the state Nursing Home Care Act and the federal
Social Security Act under Title XVIII/Medicare and Title XIX/Medicaid. According
to state officials, in 2003, Illinois had 873 nursing facilities, about 300 ICFs/MR, 10
skilled nursing facilities for children and 70 assisted living facilities. Together, these
facilities represent over 128,000 state-licensed or federally-certified beds in Illinois.
Supportive living facilities that participate in a Medicaid Section 1915(c) assisted
living waiver are certified by the DPA.
7 Centers for Independent Living were established by Title VII of The Rehabilitation Act in
1978. They are consumer-directed centers serving persons with disabilities that promote the
concept of independent living.
8 [http://www.state.il.us/agency/dhs/mhddfsnp.html] accessed on Feb. 19, 2002.

CRS-10
Illinois Long-Term Care Services for the Elderly and
Persons with Disabilities
Trends in Institutional Care
In 2000, Illinois had 873 nursing facilities with 107,800 beds, with an
occupancy rate of 84.5% (Table 3). The state has a high supply of nursing home
beds compared to the U.S. as a whole. In 2003, the state had about 72 beds per 1,000
persons age 65 and older. In comparison, in 2000 the U.S. as a whole had 53 beds
per 1,000 persons age 65 and older.
The state has undertaken three programs to decrease its reliance on nursing
homes. In FY1995, DOA began the first deinstitutionalization program which has
helped about 300 to 400 people a year return to the community, after they have been
in a nursing facility 90 or more days.9 In FY1998, the Home Services Program began
the second program under which four Centers on Independent Living (CILs) visit
nursing facilities and help willing residents in those facilities return to their homes
and communities. In FY1998, six persons left nursing facilities for the community;
in FY2002, 20 CILs projected that they would help 225 persons leave facilities.10
This program uses Home Services Program funding to pay for such things as deposits
on utilities, appliances, furniture, clothing, and groceries. Since 1998, the program
has deinstitutionalized 400 people.
In 2000, the Home Services Program started a third program which involves
screening patients being discharged from hospital to nursing homes or their homes
and providing information on available services and alternatives to nursing facilities.
In FY 2001, the program screened 2,787 persons up to age 59.11
Table 3. Nursing Home Characteristics in Illinois
and the United States
United States
Characteristics
Illinois (2003)
(1999-2000)
Number of facilities
873
17,023
Number of residents (average)
59,000
1,490,155
Number of beds
107,800
1,843,522
Number of Medicaid beds
104,564
841,458
Number of beds per 1,000 pop. aged 65 and older
71.9
52.7
9 Renee Baker, et al., Community Living and Disabilities Plan, Office of the Governor,
Springfield, Illinois, May 2002. (Hereafter cited as Baker, et al., Community Living and
Disabilities Plan.)
10 Ibid.
11 Ibid.

CRS-11
United States
Characteristics
Illinois (2003)
(1999-2000)
Number of beds per 1,000 pop. aged 75 and older
148.1
111.1
Number of beds per 1,000 pop. aged 85 and older
561.4
434.8
Occupancy rate
84.5%
80.8%
Source: For Illinois figures, data are for 2003 from the Department of Public Aid, Bureau of Rate
Development and Analysis. U.S. figures are from the American Health Care Association (ACHA),
Facts & Trends: The Nursing Facility Sourcebook. Number of beds per 1,000 population in 2000.
Trends in Home and Community-Based Care
Two of Illinois’ home and community-based services programs are unique in
the Nation because they provide older persons and younger adults who meet nursing
home functional eligibility requirements with a state entitlement to home and
community-based services. The state funds the Community Care Program for older
adults and Home Services Program for younger adults with physical disabilities with
a combination of Medicaid Section 1915(c) waiver and state funds.
Entitlements for both groups resulted from court cases that were brought against
the state to eliminate waiting lists for services. In 1982, the Department on Aging
received an order from the U.S. District Court regarding the Benson vs. Blaser case.
This class action suit focused on the lengthening waiting list for community-based
services for the elderly. The court ruled that persons on the waiting list were as
entitled to timely determination of eligibility and receipt of services as beneficiaries
who applied earlier, when no waiting list existed. The order required the department
to resolve the waiting list immediately, in effect changing the Community Care
Program into an entitlement. The final court order mandated the following: 1)
determination of eligibility within 30 days; 2) mailing of a notice of eligibility to each
applicant within 15 days of the date of eligibility determination; and 3) provision of
services within 15 days of when the notice was sent.
An entitlement to the Home Services Program was created as a result of a
judicial decision emerging from the McMillan vs. McCrimon case in 1992. The state
was refusing to accept and process applications for the Home Services program as
a method to contain costs. The U.S. District Court held that the state could not refuse
to process applications for the program because federal Medicaid requirements state
that all individuals have the opportunity to apply for medical assistance. The court
also stated that it was not clear where the public interest lay because forcing Home
Services Applicants into nursing homes had the potential to increase the state budget
more than receiving care under the Home Services Program. The practical result of
this court holding was that the state must offer those eligible for nursing facility
services the opportunity to enter the Home Services Program if they choose to do so.
The Community Care Program for Persons Age 60 and Over: State
Entitlement and Medicaid 1915(c) Waiver. The state finances the Community
Care entitlement through a combination of state general revenue funds and Medicaid
Section 1915(c) home and community-based waiver reimbursement funds. The state

CRS-12
funds the entire cost of those who do not qualify for Medicaid but do meet the
Community Care program’s eligibility requirements.
To be eligible for the Community Care Program, an individual must be: 1) age
60 years or older; 2) a U.S. citizen or resident alien; 3) have non-exempt assets of
$10,000 or less; 4) an Illinois resident; and 5) assessed as needing long-term care
(minimum score of 29 on the Determination of Need, the state’s method for
determining level of care for services).
Also, as of July 1, 2002, people who apply for Community Care must apply for
Medicaid, which will cover them if their countable incomes are at or below 100% of
the federal poverty level. Those who do not qualify for Medicaid, but who meet the
above eligibility criteria will be eligible for Community Care; their costs will be
covered entirely by state funds. According to some stakeholders, some beneficiaries
are dropping out of the Community Care program because they do not want to apply
for Medicaid.
Although Community Care does not have an income test, beneficiary income
levels are determined to establish their co-payment amounts. The average
beneficiary co-payment is approximately $10 a month, according to state officials,
and participants generally pay no more than 50% of the cost of their care plans.
Case Coordination Unit case managers visit applicants in their homes to
determine whether they meet the program’s eligibility requirements. Case managers
assess applicants’ level of impairment in 15 activities of daily living (ADLs, e.g.,
bathing, dressing) and instrumental activities of daily living (IADLs, e.g., housework,
meal preparation). The case manager also assesses the applicants’ unmet need for
services. Applicants must have 29 total points to receive services, with at least 15
of these points due to functional and cognitive impairment. The case manager also
does a mini-mental status examination that can add up to 20 points to the applicant’s
score if he or she has cognitive impairment.
The Community Care Program provides: 1) case management; 2) homemaker
services, which are non-medical support by supervised and trained homemakers and
include assistance with personal care tasks and performance of environmental tasks
such as meal preparation, laundry, housekeeping, and shopping; and 3) adult day
care. Some interviewees argued that Community Care should include medication
management, assistive technology such as Hoyer lifts, and transportation, services
which they said would make it easier for beneficiaries to remain in the community.
According to state officials, the program covered 39,354 persons on average each
month in FY2002 and approximately 43% of beneficiaries were on Medicaid. In
FY2002, the average monthly spending per program beneficiary was $445.00,
according to state officials.
Home Services Program and Other Services for Younger Adults
with Disabilities: State Entitlement and 1915(c) Waiver. The Home
Services program serves persons under age 60, although persons who reach age 60
after having joined the program can remain in it. People must score 29 points on
their determination of need; this is the same eligibility standard as the Community
Care Program for the frail elderly population. In addition, the beneficiary must have

CRS-13
a disability that will last 12 months or more. If an individual has cognitive
impairment, he or she receives ten extra points on the assessment, similar to the
Community Care Program. People must apply for Medicaid to receive services and,
according to state officials, 60% of program participants are Medicaid beneficiaries.
Unlike the Community Care Program, the Home Services Program has no cost
sharing requirements.
Program services include homemaker, personal care, adult day care, home
health, and environmental adaptations among others. Service cost maximums are
based on the level of impairment. Beneficiaries can hire and manage individual
personal care assistants who provide these services. About three-fourths of the
program’s spending went for personal assistant services in SFY2002.12
Other Medicaid Section 1915(c) Waivers. Supportive Living. Illinois
began its Supportive Living Facilities Waiver in July 1999 as a pilot program to test
use of assisted living facilities for people with disabilities aged 22-64 or frail older
persons age 65 and older who meet a nursing facility level of care. The financial
eligibility standards for an applicant’s assets are the same as for nursing facilities. In
order to qualify, persons must have countable income at or below the SSI benefit
amount, and have countable assets of no more than $2,000. Residents are allowed
to keep a $90 monthly personal needs allowance. Services available to participants
include nursing, personal care, transportation to community events, and assistance
with IADLs. The Department on Aging determines functional eligibility for the
program.
The pilot test was designed to deflect nursing facility admissions and to
determine if providing supportive living to persons with lighter care needs might
delay admission to a nursing facility. According to state officials, as of spring 2003,
the state had 23 supportive living facilities serving about 340 Medicaid residents, and
an additional 45 facilities had been approved or are under development. The waiver
was renewed for another 5 years in 2002.
Medicaid Waivers for Persons with Brain Injuries and HIV/AIDS. Illinois has
two additional Medicaid Section 1915(c) home and community-based services
waivers that target specific populations.
! The Brain Injury waiver contracts with community-based
organizations that have experience with beneficiaries with brain-
injury or cognitive impairment to provide case management for a
variety of services, including rehabilitation.
! The HIV/AIDs waiver provides the same set of services as the Home
Services Program and DHS’ Office of Rehabilitative Services
contracts with community organizations to provide assessment and
case management services.
12 Ibid.

CRS-14
Illinois Long-Term Care Services for Persons with
Mental Retardation and Developmental Disabilities
Overview
Services to persons with mental retardation and other developmental disabilities
in the United States changed dramatically over the last half of the 20th century as a
result of several factors including: 1) advocacy efforts of families and organized
constituency groups, 2) various changes to the Social Security law that provided
payments to individuals through SSI and SSDI and to service providers through the
Medicaid program, and 3) significant litigation brought on behalf of persons with
mental retardation.13
According to state officials, Illinois has about 3000 people in SODCs, 6,500
people in private ICFs/MR, and 8,800 in Medicaid Section 1915(c) home and
community-based services waivers. The costs of care for these groups are
approximately $300 million, $400 million, and $300 million respectively. The
average annual cost for a resident of an SODC is approximately $90,000; for a
private ICF/MR the cost is about $45,000 for 24-hour care.
Trends in Institutional Care
The early history of services to persons with mental retardation is characterized
by the development of large state institutions or training schools begun during the
latter part of the 19th century and continuing through the first part of the 20th century.
Between 1920 and 1967, institutions quadrupled in size and peaked at almost
200,000 individuals nationwide in 165 freestanding, state-operated mental retardation
institutional facilities.14 Today, some states are still faced with the legacy of large
state-operated institutions.
As in most states, Illinois has closed a number of its large state institutions.
Since 1960, the state has closed six of its 17 large state facilities. Some of these
facilities dated back to the late 19th century or the early part of the 20th century. Some
of the facilities that remain open are just as old and they contained 3,151 residents
with developmental disabilities on June 30, 2001. (See Appendix Table 2 for a list
of the institutions that have been closed and those in operation and their 2000
census.)
13 For a detailed history of the development of services for persons with developmental
disabilities, see David Braddock, Richard Hemp, Susan Parish, and James Westrich, The
State of the States in Developmental Disabilities, University of Illinois at Chicago,
American Association on Mental Retardation, Washington, D.C. 1998. (Hereafter cited as
Braddock, et al., The State of the States in Developmental Disabilities.)
14 Braddock, et al., The State of the States in Developmental Disabilities.

CRS-15
The number of residents in SODCs declined from 4,209 in 1992 to an estimated
2,928 in 2002, a 30.4% decrease.15 Interviewees mentioned that some parents’
organizations have allied with unions to keep SODCs open. For example, the state
has tried to close the Lincoln Developmental Center because of quality problems and
the facility’s age. Despite concerns about quality of care provided by the Center, a
court order has prevented the state from closing the Center so residents only leave
voluntarily. The state has put together a small working group to assess the future of
the SODCs; in the future, these facilities may focus on serving developmentally
disabled persons with significant medical or behavioral problems and those with
criminal convictions.
In addition to closure of state-operated facilities, the state shifted care to smaller
facilities during the 1990s. Persons with developmental disabilities living in large
institutions with 16 or more residents declined from 76.4% of all persons living in
group residences in 1990 to 44.5% in 2000. During the same period, the percentage
of persons with developmental disabilities living in group residences with 1 to 6 beds
increased from none to 39.8%. In 2000, 15.7% of persons with developmental
disabilities who lived in group residences lived in homes with 7 to 15 beds (Table
4).
Table 4. Persons with Mental Retardation and Developmental
Disabilities Served in Residential Settings, by Size of Setting,
1990, 1995, and 2000
Persons served by setting
Setting by size
1990
1995
2000
Total
18,303
20,031
20,405
(100%)
(100%)
(100%)
16+ persons
13,985
11,836
9,073
(76.4%)
(59.1%)
(45.5%)
7-15 persons
4,318
2,729
3,208
(23.6%)
(13.6%)
(15.7%)
<6 persons
0
5,466
8,124
(0%)
(27.3%)
(39.8)
Source: David Braddock, editor, with Richard Hemp, Mary C. Rizzolo, Susan Parish, and Amy
Pomeranz, Disability at the Dawn of the 21st Century and the State of the States, American
Association on Mental Retardation, Washington, D.C., 2002.
DHS’ Office of Developmental Disabilities has a number of processes or
programs designed to minimize long-term use of large facilities. The first practice
involves pre-admission screening of all applicants for institutional care to determine
if they can be served in the community. The Network Service and Support Program
15 Community Living and Disabilities Plan.

CRS-16
uses SODC services and staff to provide planning and services designed to prevent
admission to SODCs for people at risk. Another program — Short-Term Assistance
— admits applicants to SODCs for a maximum of 45 days to deal with a behavioral
crisis or medical condition that cannot be addressed in the community. These
programs have evolved to the point where every new admission to a SODC is
considered a short-term admission. Under another process, an interdisciplinary team
conducts a personal preference assessment, which is part of the larger assessment of
SODC residents, to determine whether the residents want to transfer to a community
program. Essentially, the discharge planning process begins at admission. Each
individual has a goal to move to a less restrictive setting. If the resident is capable
of living in the community, then the team develops a transfer plan for the resident.
In June 1993, Illinois signed a consent decree in the case of Bogard v. Bradley.16
The case concerned adults with developmental disabilities who were in nursing
facilities between 1986 and 1994 for more than 120 days. The decree provides these
persons with service coordination, and a choice between remaining in a nursing
facility with specialized services or moving to another residential setting. The state
has provided specialized services in nursing homes and has made 1,000 new Section
1915(c) home and community-based services waiver slots available to Bogard class
members since 1993.
Trends in Home and Community-Based Care
The major program the Office of Developmental Disabilities (ODD) offers is
one Medicaid Section 1915(c) waiver called the Home and Community-Based
Services Waiver for Adults with Developmental Disabilities. The covered services
include case management, direct support workers, respite, nursing, transportation,
day program services, residential habilitation, therapies, adaptive equipment, and
minor home modifications. Participants in this waiver receive individual service and
support advocacy, which is a form of case management designed to monitor the
beneficiary’s well-being and service implementation. The case management is
performed by an independent service coordinator agency under contract with the
state. The state does not have a separate waiver for children with developmental
disabilities; they are served under the state’s waiver for technology dependent,
medically fragile children under 21.
The Home and Community-Based Services Waiver for Adults with
Developmental Disabilities has two parts — residential and home-based. The most
popular residential setting is community integrated living arrangements (CILAs).
CILAs allow participants to live in group residential settings of eight or fewer people.
Priority populations for the residential part of the waiver include people in crisis
situations, such as those who have lost a caregiver, wards of the state approaching
age 22, people living in SODCs, and Bogard class members. Participants who live
in their own homes receive home-based support services (HBSS). Priority
populations for the HBSS services are those who are not currently receiving services,
people with a caregiver age 60 and older, people who left special education within
the last 5 years and those living with only one caregiver.
16 Ibid.

CRS-17
On July 1, 2002, Illinois terminated its state-funded HBSS program, which
provided services to help people remain at home regardless of whether they were
eligible for Medicaid. The state instead used the state program funding to expand the
home-based portion of the Medicaid waiver for persons with developmental
disabilities. HBSS participants are able to hire and fire their workers and adult
parents and siblings can be workers. Participants or guardians have the option of
deeming direct support workers qualified and of hiring and firing these workers.
Financing of Long-Term Care in Illinois
In most states, Medicaid is the chief source of financing for long-term care. In
addition to state matching of federal Medicaid funds, many states also devote
significant resources to long-term care, as Illinois does through its Community Care
and Home Services state entitlement programs. In Illinois, federal and state spending
for long-term care under the Medicaid program was $2.5 billion in FY2001.
Medicaid Spending in Illinois
Medicaid is a significant part of state budgets. After elementary, secondary and
higher education spending, Medicaid spending was the largest share of state budgets
in 2001. According to data compiled by the National Association of State Budget
Officers (NASBO), federal and state Medicaid spending represented almost 20% of
state budgets for the United States as a whole in 2001.
In Illinois, Medicaid is the largest single category of federal and state spending
combined. Of the state’s $37.7 billion budget in 2001, federal and state Medicaid
spending represented slightly more than one of every five dollars. Spending for
Medicaid about doubled as a proportion of the state’s spending from 1990 to 2001
(Table 5).
State spending for Medicaid services in Illinois contributed from state funds
only (excluding federal funds)17 also increased during the 1990s. As a percent of
spending for all categories of state spending, state Medicaid spending increased from
7.9% in 1990 to 14.5% in 2001. (Table 6).
17 Federal and state governments share the costs of Medicaid spending according to a
statutory formula based on a state’s relative per capita income (Federal Medical Assistance
Percentage, or FMAP). In FY2001, the federal share for Medicaid in Illinois was 50.0%.

CRS-18
Table 5. Share of Total Spending by Category, Illinois and the
United States, 1990-2001
Illinois
U.S. total
1990
1995
2000
2001
2001
Total expenditure
$18,845
$26,486
$35,086
$37,657
$1,024,439
(in millions)
Medicaid
11.9%
24.0%
21.5%
22.5%
19.6%
Elementary and
20.4%
17.1%
20.9%
19.7%
22.2%
Secondary Education
Higher Education
11.0%
9.5%
7.4%
7.6%
11.3%
Public Assistance
5.6%
4.0%
1.0%
0.6%
2.2%
Corrections
3.0%
3.1%
3.8%
3.8%
3.7%
Transportation
12.0%
10.5%
9.3%
9.4%
8.9%
All other expenses
36.1%
31.7%
36.2%
36.4%
32.1%
Source: CRS calculations based on National Association of State Budget Officers (NASBO), State
Expenditure Reports, 1990-2001.
Table 6. State Spending for Medicaid from State Funds as a
Percent of State Spending, Illinois and the United States,
1990-2001
Illinois
All states
State spending
1990
1995
2000
2001
2001
Total state spending (in
$15,887
$20,349
$27,681
$29,469
$760,419
millions)a
State Medicaid spending
$1,252
$3,295
$3,924
$4,261
$85,141
(millions)b — state only
funds
State Medicaid spending
7.9%
16.2%
14.2%
14.5%
11.2%
as a percent of total state
spending — state only
fundsc
Source: CRS calculations based on data from the National Association of State Budget Officers
(NASBO), State Expenditure Reports for 1991, 1997 and 2001. Data reported are for state fiscal
years. Percentages may not sum to 100% due to rounding.
a. Total state spending for all spending categories, excluding federal funds.
b. State spending for Medicaid, exclusive of federal funds.
c. Includes assessments of $817.3 million and $10.4 million in local funds in FY1995. These funds
represent 24.8% and 0.3% of total state-funded Medicaid expenditures.

CRS-19
Medicaid Long-Term Care Spending in Illinois18
Long-term care spending represented 31.3% of all Medicaid expenditures in
Illinois in FY2001 ($2.5 billion of $8.1 billion), a large decrease from 42.9% of all
expenditures in FY1990 ($1.1 billion of $2.5 billion) (Tables 7 and 8). This
reduction was due, in part, to the state’s decreased reliance on ICFs/MR; its spending
decreased from 32.6% of Medicaid long-term care spending in FY1990 to 26.4% in
2001. During the same time period, nursing home care as a portion of Medicaid
long-term care spending decreased only slightly from 61.1% to 59.2%. Despite these
decreases in the proportion of spending devoted to institutions, institutional care still
accounted for 85.6% of Medicaid long-term care spending in 2001.
Expenditures for home and
Medicaid long-term care financing at a
community-based services as a
glance:
proportion of total long-term care
In FY2001, $2.2 billion or more than one of
spending more than doubled to reach
four Medicaid dollars was for care in
14.4% of long-term care spending in
institutions; nursing home spending accounted
FY2001. Increases in funding for
for more than two-thirds of total institutional
Medicaid Section 1915(c) home and
spending (Table 8). Spending for nursing
homes represented 18.5% of total Medicaid
community-based waivers were largely
spending in FY2001. In the same year, home
responsible for the increase in Medicaid
and community-based services accounted for
spending on home and community-based
4.5% of all Medicaid spending.
services (Table 7).
Spending for nursing home care grew 81.4%
from FY1990 to FY2001, much less than the
Spending for home and
157.1% increase in total Medicaid spending
community-based services grew by
during the same time period.
332.1% from FY1990 to FY2001 (in
constant 2001 dollars). However,
Spending for nursing home care decreased
nominal spending for this form of long-
slightly as a percentage of long-term care
spending from 61.1% in FY1990 to 59.2% in
term care was only $364.4 billion
FY2001. During the same period, the portion
compared to $2.2 billion for institutional
spent on ICFs/MR decreased from 32.6% to
care (Table 8).
26.4%.
About 14.4% of Medicaid dollars spent on
long-term care is for home and community-
based services, primarily for Section 1915(c)
home and community-based services waivers.
Spending on this form of waiver increased by
355.2% from FY1990-FY2001.
18 This section discusses total Medicaid spending, both federal and state.

CRS-20
Table 7. Medicaid Long-Term Care Spending in Illinois,
FY1990-FY2001
(Numbers may not sum to 100% due to rounding)
1990
1995
2000
2001
Long-term care spending as a % of
42.9%
31.4%
31.7%
31.3%
Medicaid spending
Institutional care spending as a % of
93.8%
91.9%
88.3%
85.6%
long-term care spending
Nursing home spending as a percentage of
61.1%
63.8%
61.8%
59.2%
long-term care spending
ICF/MR*spending as a percentage of
32.6%
28.0%
26.5%
26.4%
long-term care spending
Total home and community-based
services spending as a percentage of long-
6.2%
8.1%
11.7%
14.4%
term care spending
HCBS waivers spending as a % of long-
5.7%
7.8%
11.3%
13.8%
term care spending
Source: CRS calculations based on CMS/HCFA 64 data provided by The Medstat Group, Inc. For
2000 and 2001, Brian Burwell et al., Medicaid Long-Term Care Expenditures in FY2001, May 10,
2002. For 1995, Brian Burwell, Medicaid Long-Term Care Expenditures in FY2000, May 7, 2001.
For 1990, Brian Burwell, Medicaid Expenditures for FY1991, Systemetrics/McGraw-Hill Healthcare
Management Group, January 10, 1992. (Hereafter cited as Burwell, Medicaid Expenditures FY1991-
FY2001.) The 1990 total Medicaid spending based on HCFA 64 data provided by The Urban
Institute, Washington, D.C.
*Intermediate care facilities for the mentally retarded.
Figure 2. Institutional and Home and Community-Based Services as a
Percent of Medicaid Long-Term Care Spending in Illinois, 1990-2001
100%
90%
80%
$997.5
$1,727.9
million
million
$2,168.9
70%
million
60%
50%
40%
30%
$364.4
20%
$66.3
$152.9
million
million
million
10%
0%
1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001
Institutional Care (Nursing Home and ICF-MR)
Home and Community-Based Care (Home Health and HCBS Waivers)
Source: CRS calculations based on Burwell, Medicaid Expenditures FY1991-FY2001.

CRS-21
Table 8. Medicaid Spending in Illinois, Total Spending and
Long-Term Care Spending, by Category, and Percent Change,
FY1990-FY2001 in Constant 2001 Dollars
(in millions of current dollars)
Percent
change
1990
1995
2000
2001
1990-2001
Total Medicaid
$2,479.3
$5,986.5
$7,738.4
$8,103.0
157.1%
Total Long-Term
$1,063.8
$1,880.8
$2,450.3
$2,533.3
87.3%
Care
Total Institutional
$997.5
$1,727.9
$2,164.5
$2,168.9
71.0%
Care
Nursing Home
$650.5
$1,200.8
$1,515.3
$1,499.9
81.4%
Services
ICFs/MR
$347.0
$527.1
$649.2
$669.0
51.6%
Total Home and
Community-Based
$66.3
$152.9
$285.8
$364.4
332.1%
Services
Home Health
$6.1
$7.1
$8.1
$15.9
104.3%
Personal Care
$0.0
$0.0
$0.0
$0.0
0.0%
HCBS Waivers
$60.2
$145.9
$277.6
$348.6
355.2%
Source: CRS calculations based on Brian Burwell, Medicaid Expenditures FY1991-FY2000.
FY1990 total Medicaid spending is based on CMS/HCFA 64 data provided by The Urban Institute,
Washington, D.C.
Figure 3. Medicaid Long-Term Care Spending by Category in Illinois,
FY1990-FY2001
(in constant 2001 dollars)
$3.0
$2.5
$2.0
$1.5
$1.0
$0.5
$0.0
1990
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
Nursing Home Services
ICF-MR
Home Health
HCBS Waivers
Source: CRS calculations based on Burwell, Medicaid Expenditures FY1991-2001.

CRS-22
Figures 4a and 4b depict changes in long-term care spending patterns from FY1990
to FY2001, showing a small shift in Medicaid spending for home and community-
based care.
Figure 4a. Medicaid Long-Term Care Spending in Illinois, by
Category, FY1990
Total Medicaid LTC Spending: $1,063.8 million
Hom e Health
ICF-MR
0.6%
32.6%
Home &
Community-
HCBS Waivers
Based Services
5.7%
6.2%
Nursing Hom e
61.1%
Source: CRS calculations based on Burwell, Medicaid Expenditures FY1991 -FY2001.
Figure 4b. Medicaid Long-Term Care Spending in Illinois, by
Category, FY2001
Total Medicaid LTC Spending in Illinois: $2,533.3 million
Home Health
ICF-MR
0.6%
26.4%
Home &
Community -
Based Serv ices
HCBS Waivers
14.4%
13.8%
Nursing Home
Services
59.2%
Source: CRS calculations based on Burwell, Medicaid Expenditures FY1991 -FY2001.

CRS-23
Medicaid and State Spending on Services for Persons with
Mental Retardation or Developmental Disabilities
Federal and state spending for persons with mental retardation and
developmental disabilities (MR/DD) was $1.2 billion in 2000 (Table 9). This
represented an increase of 63.1% (in constant 2000 dollars) since 1990. Of total
2000 spending, 60.2% came from state resources. Section 1915(c) waiver funding
increased from $9.8 million in 1990 to $74.4 million in 2000.
In Illinois, there is about an equal use of Medicaid waiver spending for persons
with MR/DD and other persons with disabilities. The MR/DD population accounted
for about half of spending in FY2001 (Figure 5).
Figure 5. Medicaid Home and Community-Based Services
Waiver Spending by Target Population in Illinois, FY2001
Total Medicaid HCBS Waiver Spending: $348.6 million
Other Waivers
4.1%
Aged,
MR/DD
Aged/Disabled
Waivers
and Physically
50.2%
Disabled
Waivers
45.7%
Source: CRS calculations based on Steve Eiken and Brian Burwell, Medicaid HCBS Waivers
Expenditures, FY1995-FY2001, by The Medstat Group, Inc., May 13, 2002.
In 2000, 56.6% of total spending on persons with developmental disabilities or
$673.5 million was for home and community-based services. The Medicaid Section
1915(c) waiver program is one component of spending for these services,
representing 11.0%. Waiver spending increased by 661.6% in constant 2000 dollars
since 1990. The state has used waivers to maximize federal Medicaid reimbursement
for home and community-based services. Federal spending for congregate and
institutional services increased by 26.0% in constant dollars from 1990 to 2000
(Table 9).

CRS-24
Table 9. Federal and State Spending for Institutional and
Community Services for Persons with Mental
Retardation/Developmental Disabilities in Illinois, 1990 and 2000
(in millions of current dollars)
Percent
Percent of
change in
1990
2000
FY2000
constant
total
2000
dollars
Total funds
$729.2
$1,189.5
100%
63.1%
Congregate/Institutional
$435.3
$516.0
43.4%
18.5%
services
Federal funds
$195.1
$245.9
20.7%
26.0%
State funds
$240.2
$270.1
22.7%
12.5%
Community services
$293.9
$673.5
56.6%
129.1%
Federal funds
$64.1
$226.9
19.1%
254.1%
ICF/MR funds
$21.2
$65.0
5.5%
207.5%
HCBS Waiver
$9.8
$74.4
6.3%
661.6%
Title XX/SSBG Funds
$0.0
$0.0
0.0%
—
Other
$33.1
$87.5
7.4%
163.9%
State funds
$229.8
$446.6
37.5%
94.3%
Source: CRS calculations based on data presented in David Braddock, et al., The State of the States
in Developmental Disabilities (Fifth Edition), 1998, Washington, D.C., American Association on
Mental Retardation, p. 404 (for 1990 data). Unpublished data furnished by Richard Hemp, University
of Colorado (for 2000 data).
Issues in Long-Term Care in Illinois
The following discussion highlights the issues raised in state reports collected
for the project and the interviews with state officials and key stakeholders conducted
during the site visit to Illinois in the summer of 2002.
State Entitlement and Maximization of Federal Medicaid Dollars.
Illinois has a unique approach to long-term care, compared to other states, because
it has programs that provide an entitlement to home and community-based services
for frail older persons and younger adults with physical disabilities – Community
Care and the Home Services Program, respectively. These entitlements result from
two court cases during the early 1980s and 1990s, which were designed to eliminate
delays in receipt of services for which people qualified. The state programs do not
have income eligibility requirements, but do have a maximum level of non-exempt
assets. The Community Care Program uses a cost-sharing system for those non-
Medicaid individuals whose income exceeds 100% of the federal poverty level.

CRS-25
Before 2002, Illinois did not require Community Care and Home Services
program beneficiaries to apply for Medicaid; the state covered the program costs of
some beneficiaries who might have qualified for Medicaid entirely from state funds.
In 2002, the state began requiring applicants for, and current beneficiaries of, both
programs to apply for Medicaid. This action is part of the state’s efforts to maximize
Medicaid funding by using this program’s options to the fullest extent possible. This
Medicaid maximization has occurred, at least in part, because of the budgetary crisis
Illinois has been facing.

According to persons interviewed for this study, some people have refused to
apply for Medicaid and have dropped out of the state entitlement program.
Interviewees assume that people do not apply for Medicaid because they object to
being “welfare recipients” and want to avoid potential estate recovery. (Under
Medicaid, states are required to recover from the estate of an individual age 55 or
older reimbursement for amounts paid by Medicaid for nursing facility services,
home and community-based services, and related hospital and prescription drugs.)19
Budget Cuts. Illinois, like many states, is facing a revenue shortfall;
according to state officials, State Fiscal Year (SFY) 2002 revenue was about $400
million below what had been projected. At the time of the site visit, the state planned
no eligibility or service cuts in response to the budget crisis. Rather, most Medicaid
providers, including home health agencies and nursing facilities, received a 5.9% rate
decrease for SFY2003; however, waiver providers did not receive any cuts.
Generally low payment rates are affecting some providers; for example, interviewees
asserted that some adult day care sites are closing because payments are too low.
The DPA has also slowed its payments to providers to address the budget
shortfall; payment can be delayed by up to 90 days. DPA can do this because it is the
only department of state government that is able to pay the prior’s year’s bills with
current appropriations. According to interviewees, slow payments do not hit large
for-profits as hard as smaller, non-profit providers who do not have existing
relationships with creditors. Payments to providers from other departments are not
delayed.
Certification and Licensing of Facilities. Interviewees mentioned a
number of issues related to certification and licensing of long-term care facilities.
The first issue relates to nursing facility certification for participation in
Medicare and Medicaid. The federal survey process treats every nursing facility the
same and some interviewees would like surveyors to spend more time on the
facilities with poor performance. Interviewee suggested that surveyors examine a
facility’s core conditions and if they find that the facility is out of compliance in one
of these areas, they then go into more depth in that area without having to do a full
survey.
19 Section 1917 of the Medicaid statute. The law specifies that recovery may be made only
after the death of the individual and his or her surviving spouse and only at a time when
there is no surviving child under age 21 or a child with disabilities.

CRS-26
The second issue relates to licensure for assisted living facilities (ALFs), which
began in December 2001. According to state officials, 17 licenses have been issued,
and 105 facilities have applied for licensure, half of which are located in the Chicago
area. State officials estimate that 300-500 ALFs may seek licensure and state
officials may face an upsurge in applications as a result increasing the supply of
facilities but also increasing the workload of licensing staff.
Labor Issues. Most interviewees agreed that the labor shortage may be
affecting the quality of long-term care. With the recent economic problems and the
resulting rise in unemployment, facilities had found it easier to hire direct care
workers. However, Medicaid payment cuts for facilities may lead to reductions in
staff salary and benefits and additional problems hiring workers. Facilities that have
trouble hiring staff tend to rely on temporary staffing agencies. The results can be
lack of continuity of care, which can negatively affect residents’ quality of life
because the temporary staff are not familiar with residents’ needs. Rural areas tend
to have less trouble hiring and keeping long-term care staff because facilities may be
the only major employers in an area.
One of the ways in which providers have dealt with the labor shortage is to bring
in nationally recognized experts to provide facilities with information about how to
make facilities more home-like and a better environment for long-term care workers.
Labor shortages do not appear to be as much of a problem for facilities serving
those with developmental disabilities. Three reasons were given for this: (1) these
facilities pay staff more than nursing facilities; (2) developmental disability workers
are generally in smaller facilities with long staying residents where relationships
between staff and residents have a chance to develop over time; and (3) these
workers also do not have to deal with as much incontinence as nursing facility
workers do. However, retention of workers is still a challenge.
The state implemented an early retirement initiative for state employees in 2002.
This initiative has reduced the number of veteran employees just as a new Governor
came into office. The state has also attempted to lay off employees but a court
decision halted these actions. The Home Services Program is an example of how a
limited number of state workers can affect a program. The program is serving 200
new beneficiaries a month, up from 70 a month several years ago. However, the
number of state staff has not kept pace with the growth in the number of
beneficiaries.
Consumer Direction. Although consumer direction is incorporated into the
basic structure of the Home Services Program for younger adults with physical
disabilities, older persons have not had that option. A concern is that older adults,
many with cognitive impairments, would not want to manage their own services and
might be vulnerable to exploitation by their workers.
Some interviewees recommended that the federal government bring together
policymakers who have instituted consumer-direction for persons with
developmental disabilities to determine if some of the techniques are transferable to
persons with cognitive impairment.

CRS-27
Lack of Adequate Supported Housing. Another issue raised relates to
lack of affordable housing. This is a significant barrier to receipt of long-term care
in the community, according to interviewees. People who have resided in nursing
homes and lost their community residence may have difficulty going back to the
community without access to affordable housing. Also, since Medicaid pays for
room and board in nursing facilities and not in assisted or supportive living facilities,
people may be forced into nursing facilities.

CRS-28
Appendix 1. Major Home and Community-Based Long-Term Care Programs for the Elderly and Persons with
Disabilities in Illinois
Functional eligibility
Financial eligibility
Annual cost
Income/
No. of persons
cap
Determined
Resource
Determined
enrolled/slots
(aggregate/
Administrativ
Financial
Program
Target group
Criteria
by
limits
by
Services
approved
individual)
e oversight
oversight
Community
Persons age 60 Nursing facility Case
Non-exempt
Case
Homemaker,
FY2002
Service cost
Department on Department
Care
and over
level of care
Coordination
assets of
Coordination
adult day
average
maximums are Aging
on Aging and
Program
Units
$10,000 or less Units
service,
monthly
based on
Department of
This program
determine
various
caseload —
assessment
Case
Public Aid (for
Program is
is an
No income test financial
demonstration 39,354
scores.
Coordination
waiver only)
funded by
entitlement for
eligibility for
project
Units provide
state general
those meeting
Community
services
FY2002
case
revenue funds. the eligibility
Care
general
management
Medicaid
criteria.
Programs and Services are
revenue fund
services to
reimbursement
the
available in
spending -
beneficiaries.
is received for
Department of persons’
$210.3 million
Medicaid
Human
homes or adult
Department of
eligible
Services local day service
Public Aid
beneficiaries
offices
sites.
oversees
who are
determine
waiver services
claimed
financial
with periodic
through the
eligibility for
reviews of a
Home &
Medicaid.
sample of CCP
Community-
case files.
Based Services
Waiver for the
Elderly.

CRS-29
Functional eligibility
Financial eligibility
Annual cost
Income/
No. of persons
cap
Determined
Resource
Determined
enrolled/slots
(aggregate/
Administrativ
Financial
Program
Target group
Criteria
by
limits
by
Services
approved
individual)
e oversight
oversight
Home and
People with
Nursing facility Care
Non-exempt
Department of Intermittent
2,750 is the
There are
Department of Department of
Community-
disabilities
level of care
Coordination
assets of
Human
nursing,
total number
seven
Public Aid,
Public Aid
Based Services aged 22-64 or
Units
$2,000 or less
Services
personal care,
of slots
geographic
Bureau of
Waiver for
frail elderly,
medication
approved at
areas each
Long Term
Supportive
age 65 and
Annual income
oversight and
the time of the with their own Care
Living
over
is dependent on
assistance with waiver
annual cap for
Facilities
geographic
self-
renewal
provisions of
area:
administration, beginning July services.
Section
laundry,
1, 2002.
1915(c) waiver
Chicago –
housekeeping,
Chicago –
was initially
$28,140
maintenance,
$22,608
approved in
social/
July 1999.
S. Suburb –
recreational
S. Suburb –
$27,108
programming,
$21,575
ancillary
Northwest –
services such
Northwest–
$25,212
as
$19,674
transportation
Central –
to community
Central –
$24,168
events, 24
18,633
hour response/
W. Central –
security staff,
W. Central –
$22,884
health
$17,352
promotion and
St. Louis –
exercise
St. Louis –
$24,060
programming,
$18,524
emergency call
South – 22,152
system
South –
$16,622
Services
available in
certified

CRS-30
Functional eligibility
Financial eligibility
Annual cost
Income/
No. of persons
cap
Determined
Resource
Determined
enrolled/slots
(aggregate/
Administrativ
Financial
Program
Target group
Criteria
by
limits
by
Services
approved
individual)
e oversight
oversight
supportive
living
facilities.
These facilities
offer private
apartments and
all meals.

CRS-31
Functional eligibility
Financial eligibility
Annual cost
Income/
No. of persons
cap
Determined
Resource
Determined
enrolled/slots
(aggregate/
Administrativ
Financial
Program
Target group
Criteria
by
limits
by
Services
approved
individual)
e oversight
oversight
Home Services People with
Nursing
Department
For those 18 or Department of Homemaker,
Waiver year
Service cost
Department of Department of
Program
physical
Facility level of of Human
over,
Human
personal care,
2001 – 19,198. maximums are Human
Public Aid
disabilities
care and
Services,
individuals can Services
adult day care, Unduplicated
based on
Services,
Program is
ages 0–59.
severe
Office of
have no more
maintenance
recipients in
assessment
Office of
funded by the
People who
disability
Rehabilitation than $10,000 in
home health,
FY2001 –
scores.
Rehabilitation
Home and
turn 60 after
lasting at least
Services
non-exempt
personal
15,860
Services
Community-
entering the
12 months
assets.
emergency
Based Services program may
response
$320.3 million
Waiver for
remain in it.
For those under
system,
in FY2001
Persons with
18, family
environmental
Disabilities
This program
assets cannot
accessibility
and state
is an
exceed
adaptations,
funds.
entitlement to
$30,000.
home-
Initial
people who
delivered
approval date
meet the
People on SSI
meals
of the Section
eligibility
because of DD
1915(c) waiver criteria.
must have
Services are
was in 1983.
countable
available in
incomes at or
individual
below 200% of
homes or adult
SSI to receive
day care sites.
Medicaid.

CRS-32
Functional eligibility
Financial eligibility
Annual cost
Income/
No. of persons
cap
Determined
Resource
Determined
enrolled/slots
(aggregate/
Administrativ
Financial
Program
Target group
Criteria
by
limits
by
Services
approved
individual)
e oversight
oversight
Home Services Persons with
Nursing facility Department
For those 18 or Department of Homemaker,
800 slots, 614
Service cost
Department of Department of
Program
brain injury of level of care
of Human
over,
Human
personal care,
unduplicated
maximums are Human
Public Aid
any age
Services,
individuals can Services
adult day care, recipients in
based on
Services,
Home and
Office of
have no more
habilitation,
FY 2001
assessment
Office of
Community-
This program
Rehabilitation than $10,000 in
day
scores.
Rehabilitation
Based Services is an
Services
non-exempt
habilitation,
$15.6 million
Services
Waiver for
entitlement for
assets.
prevocational
in FY2001
Persons with
those meeting
services,
Brain Injury
the eligibility
For those under
supported
criteria.
18, family
employment
Initial Section
assets cannot
services,
1915(c) waiver
exceed
environmental
approval date
$30,000.
accessibility
July 1999
adaptations,
People on SSI
personal
because of
emergency
developmental
response
disabilities
systems,
must have
behavioral
countable
services,
incomes at or
maintenance
below 200% of
home health,
SSI to receive
occupational
Medicaid.
therapy,
speech hearing
and language
services,
physical
therapy,
specialized
medical
equipment and

CRS-33
Functional eligibility
Financial eligibility
Annual cost
Income/
No. of persons
cap
Determined
Resource
Determined
enrolled/slots
(aggregate/
Administrativ
Financial
Program
Target group
Criteria
by
limits
by
Services
approved
individual)
e oversight
oversight
supplies,
skilled
nursing, home
delivered
meals
Services are
available in
individual
homes

CRS-34
Functional eligibility
Financial eligibility
Annual cost
Income/
No. of persons
cap
Determined
Resource
Determined
enrolled/slots
(aggregate/
Administrativ
Financial
Program
Target group
Criteria
by
limits
by
Services
approved
individual)
e oversight
oversight
Home Services Persons
Hospital level
Department
For those 18 or Department of Homemaker,
Waiver slots:
Service cost
Department of Department of
Program
diagnosed with of care
of Human
over,
Human
personal care,
1,575 in
maximums are Human
Public Aid
HIV or AIDS
Services
individuals can Services
maintenance
waiver year
based on
Services,
Home and
of any age
have no more
home health,
(WY) 2001;
assessment
Office of
Community-
who would
than $10,000 in
personal
1,294
scores.
Rehabilitation
Based Services otherwise be
non-exempt
emergency
unduplicated
Services
Waiver for
institutionaliz-
assets.
response
waiver
Persons with
ed in a hospital
system, home
recipients in
HIV or AIDS
setting.
For those under
delivered
WY2001
18, family
meals,
Initially
This program
assets cannot
environmental General
approved in
is an
exceed
accessibility
revenue fund
October 1990
entitlement for
$30,000.
adaptations
expenditures
people who
in SFY2001
meet the
People on SSI
Services are
$17,903,502.
eligibility
because of DD
available in
criteria.
must have
individual
countable
State
homes.
incomes at or
expenditures
below 200% of
$9,937,168 in
SSI to receive
WY2001.
Medicaid.
Federal
reimbursement
$4,968,584 in
WY2001

CRS-35
Functional eligibility
Financial eligibility
Annual cost
Income/
No. of persons
cap
Determined
Resource
Determined
enrolled/slots
(aggregate/
Administrativ
Financial
Program
Target group
Criteria
by
limits
by
Services
approved
individual)
e oversight
oversight
Home and
People with
ICF/MR level
PAS agencies Aged, blind, or Department of Residential
8250 slots in
For Supported Department of Department of
Community-
MR/DD, 18
of care
disabled in
Human
habilitation,
WY2001;
Living
Human
Public Aid
Based Services years or older
209(b) States.
Services
including
8,037
Services,
Services,
Waiver for
Optional State
Community
unduplicated
$1500 a
Office of
Adults with
supplement
Integrated
waiver
month.
Developmental
Develop-
recipients.
Living
recipients
Beneficiaries
Disabilities
mental
Optional
Arrangements
in this
Disabilities
categorically
or Community
program have
State
needy aged and
Living Facility
access to
expenditures
disabled who
for 16 or fewer
funding for
Initial
in WY2001
have income at
persons; day
adaptive
approval in
$201,616,853
100% of
habilitation
equipment or
Dec. 1983
federal poverty
including
minor home or
level.
developmental Federal
vehicle
Medically
training and
reimbursement modifications
needy persons.
supported
$94,766,934 in of up to
employment;
WY2001
$15,000 over 5
supported
years.
living services
including team
SLS, now
leader, direct
called Home-
support,
Based Support
respite,
Services
nursing,
(HBS),
behavioral
provides
services,
services based
physical
on the
therapy,
individual
occupational
service plan up
therapy,
to a maximum
speech therapy
determined by
and
DHS.

CRS-36
Functional eligibility
Financial eligibility
Annual cost
Income/
No. of persons
cap
Determined
Resource
Determined
enrolled/slots
(aggregate/
Administrativ
Financial
Program
Target group
Criteria
by
limits
by
Services
approved
individual)
e oversight
oversight
transportation;
professional
therapies
including
behavioral,
physical,
occupational
and speech;
adaptive
equipment and
minor home
modifications
Services are
available in
people’s
homes,
community
residential
sites, and day
programs.
Source: Illinois Home and Community-Based Services 1915(c) Waivers Fact Sheets, Aug. 5, 2002, Department of Public Aid, Bureau of Interagency Coordination.

CRS-37
Appendix 2. Large State MR/DD Facilities, 1960-
2001, Including Facility Population, Per Diem
Expenditure, and Closures (IL)
Average per
Large state MR/DD
Year
Residents with
diem
facilities or units
facility
Year
MR/DD on
expenditures
operating 1960-2001
opened
closed
June 30, 2001
FY2001 ($)
Alton Mental Health &
1914
1994
—
—
Dev. Ctr. (Alton)
Bowen Ctr. (Harrisburg)
1966
1982
—
—
Choate Dev. Ctr. (Anna)
1873
191
429.74
Dixon Ctr. (Dixon)
1918
1987
—
—
Elgin Mental Health &
1872
1994
—
—
Dev. Ctr. (Elgin)
Fox Dev. Ctr. (Dwight)
1965
—
158
325.52
Galesburg Ctr. (Galesburg)
1959
1985
—
—
Howe Dev. Ctr. (Tinley
1973
—
387
364.65
Park)
Jacksonville Dev. Ctr.
1851
—
227
377.36
(Jacksonville)
Kiley Dev. Ctr.
1975
—
269
303.56
(Waukegan)
Lincoln Dev. Ctr. (Lincoln)
1866
—
379
317.00
Ludeman Dev. Ctr. (Park
1972
—
408
309.01
Forest)
Mabley Dev. Ctr. (Dixon)
1987
—
100
298.96
Meyer Mental Health Ctr.
1967
1993
—
—
(Decatur)
Murray Dev. Ctr.
1964
—
323
318.28
(Centralia)
Shaprio Dev. Ctr.
1879
—
662
328.05
(Kankakee)
Singer Mental Health &
1966
—
47
456.05
Dev. Ctr. (Rockford)
Source: Residential Services for Persons with Developmental Disabilities: Status and Trends Through
2001, Research and Training Center on Community Living, Institute on Community
Integration/UCEED, University of Minnesota, June 2002.

CRS-38
Appendix 3. About the Census Population
Projections
The projections use the cohort-component method. The cohort-component
method requires separate assumptions for each component of population change:
births, deaths, internal migration (Internal migration refers to state-to-state migration,
domestic migration, or interstate migration), and international migration ... The
projection’s starting date is July 1, 1994. The national population total is consistent
with the middle series of the Census Bureau’s national population projections for the
years 1996 to 2025.” Source: Paul R.,Campbell, 1996, Population Projections for
States by Age, Sex, Race, and Hispanic Origin: 1995 to 2025, U.S. Bureau of the
Census, Population Division, PPL-47. For detailed explanation of the methodology,
see same available at:
[http://www.census.gov/population/www/projections/ppl47.html].

CRS-39
Additional Reading
Renee Baker, Linda, Dwars Peter, Garner Jackie, Schreiber Margo, Community
Living and Disabilities Plan, Office of the Governor, Springfield Illinois, May
2002
Illinois Department of Public Aid, Medical Assistance Program Annual Report Fiscal
Year 2001, Springfield Illinois. 2002.
Illinois Department on Aging, Fiscal Year 2002 Area Agency on Aging’s Caregiver
Initiatives, Springfield Illinois, 2001.
Illinois Department on Aging, Fiscal Year 2000 Annual Report, October 2000,
Springfield Illinois.
Illinois Department of Human Services, Office of Developmental Disabilities, Three-
Year Strategic Plan FY 2002-2004, April 17, 2001, Springfield Illinois.
Illinois Department of Human Services, Office of Developmental Disabilities,
Home-Based Support Services Interim Manual for Individuals with
Developmental Disabilities, Families, Service Facilitators, and Service
Providers, July 1, 2002, Springfield Illinois.
Illinois Department of Human Services, Home Services Program; Annual Joint
Report to the Governor and the General Assembly on Public Act 81-202, May
2002, Springfield, Illinois.