A CRS Review of 10 States: Home and Community-Based Services – States Seek to Change the Face of Long-Term Care: Pennsylvania
Order Code RL31850
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:
Pennsylvania
Updated April 2, 2003
Carol O’Shaughnessy
Specialist in Social Legislation
Domestic Social Policy Division
Rob Weissert, Julie Stone, and Sidath Panangala
Domestic Social Policy Division
Meridith Walters
Consultant
Domestic Social Policy Division
Congressional Research Service ˜ The Library of Congress
Home and Community-Based Services – States Seek
to Change the Face of Long-Term Care: Pennsylvania
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 have drawn the attention of federal and state policymakers. 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
payer 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, the first in the
series of ten state reports, presents background and analysis about long-term care in
Pennsylvania.
Long-term care issues have high prominence among state officials in
Pennsylvania as a result of its large elderly population and concern about the impact
of long-term care costs on the state’s budget. Its population aged 65 and older is
15.6% of its total population, ranking second only to Florida. By 2025, 21% of its
population will be 65 and older. Pennsylvania federal and state Medicaid spending
for long-term care in FY2001 was $5.1 billion – almost half of all Medicaid
spending. Spending for nursing homes was more than one-third of Medicaid
spending. While spending for home and community-based services has increased
dramatically in recent years, these services represented less than one of every five
dollars spent on long-term care in FY2001.
Over the last 2 decades, Pennsylvania has documented issues it has confronted
in providing long-term care services. Among these issues are: an imbalance in
financing favoring institutional care, rather than home and community-based care
(which most people prefer); fragmentation in the management and delivery of
services; difficult access to services, especially for low and moderate income persons
who do not qualify for Medicaid; and disparities in service availability across the
state and populations in need of care. According to state officials, Pennsylvania’s
guiding principles in long-term care are to: control surplus growth of nursing home
beds; support consumer choice; encourage expansion of home and community-based
services; fund services rather than capital construction; and assure quality of care.
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
Introduction: Federal Legislative Perspective . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
A CRS Review of Ten States: Report on Pennsylvania . . . . . . . . . . . . . . . . . . . . . 5
Summary Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Demographic Trends . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Administration of Long-Term Care Programs . . . . . . . . . . . . . . . . . . . . . . . . 6
Trends in Institutional Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
Trends in Home and Community-Based Care . . . . . . . . . . . . . . . . . . . . . . . . 7
Long-Term Care Spending . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8
Issues in Financing and Delivery of Long-Term Care . . . . . . . . . . . . . . . . . . 8
Demographic Trends . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
Need for Long-Term Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
Administration of Long-Term Care Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . 12
State and Local Administration . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12
Responsibility for Financial and Functional Eligibility
Determinations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15
Pennsylvania’s Long-Term Care Services for the Elderly and Persons
with Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16
Trends in Institutional Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16
Trends in Home and Community-Based Care . . . . . . . . . . . . . . . . . . . . . . . 18
Medicaid 1915(c) Waivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19
State Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21
Pennsylvania’s Long-Term Care Services for Persons with Mental
Retardation and Developmental Disabilities . . . . . . . . . . . . . . . . . . . . . . . . 24
Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24
Trends in Institutional Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25
Trends in Home and Community-Based Care . . . . . . . . . . . . . . . . . . . . . . . 28
Medicaid 1915(c) Waivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28
Financing Long-Term Care in Pennsylvania . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29
Medicaid Spending in Pennsylvania . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30
Medicaid Long-Term Care Spending in Pennsylvania . . . . . . . . . . . . . . . . 32
State Spending on Home and Community-Based Services
for the Elderly . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37
Medicaid and State Spending on Services for Persons with Mental
Retardation and Developmental Disabilities . . . . . . . . . . . . . . . . . . . . 39
Selected Issues in Financing and Delivery of Long-Term Care Services
in Pennsylvania . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40
Institutional Bias . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40
Categorical Approach to Home and Community-Based Services . . . . 41
Medicaid Eligibility Requirements and Access to Services . . . . . . . . 42
Equity of Home and Community-Based Service Access
Across Populations in Need of Care . . . . . . . . . . . . . . . . . . . . . . 44
Waiting Lists for Home and Community-based Care for Persons
with Mental Retardation and Developmental Disabilities . . . . . . 44
Long-Term Care Staffing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45
Fragmentation of Responsibility for Long- Term Care . . . . . . . . . . . . 46
Appendix 1. Major Home and Community-Based Long-Term Care Programs
for the Elderly and Persons with Disabilities in Pennsylvania . . . . . . . . . . 48
Appendix 2. Population in Large State Facilities . . . . . . . . . . . . . . . . . . . . . . . . 63
Appendix 3. About the Census Population Projections . . . . . . . . . . . . . . . . . . . . 65
Additional Reading . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 66
List of Figures
Figure 1. Percentage Population Increase in Pennsylvania,
2000-2025 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
Figure 2. Pennsylvania Long-Term Care System . . . . . . . . . . . . . . . . . . . . . . . . 14
Figure 3. Institutional and Home and Community-Based Services
as a Percent of Medicaid Long-Term Care Spending
in Pennsylvania, 1990-2001 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34
Figure 4. Medicaid Long-Term Care Spending by Category
in Pennsylvania, FY1990-FY2001 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35
Figure 5a. Medicaid Long-Term Care Spending in Pennsylvania
by Category, FY1990 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36
Figure 5b. Medicaid Long-Term Care Spending in Pennsylvania
by Category, FY2001 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36
Figure 6. Medicaid Home and Community-Based Services Waiver
Spending by Target Population in Pennsylvania, FY2001 . . . . . . . . . . . . . 37
List of Tables
Table 1. Pennsylvania Population Age 65 and Older, 1990 and 2000 . . . . . . . . . . 9
Table 2. Elderly Population as a Percent of Total Population,
Pennsylvania and the United States, 2025 . . . . . . . . . . . . . . . . . . . . . . . . . . 10
Table 3. Estimated Number of Persons with Two or More Limitations
in Activities of Daily Living (ADLs), by Poverty Status,
in Pennsylvania . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
Table 4. Nursing Home Characteristics in Pennsylvania
and the United States
. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16
Table 5. Persons with Mental Retardation and Developmental
Disabilities Served in Residential Settings, by Size of Setting,
1990, 1995, and 2000 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27
Table 6. Share of State Spending by Category, Pennsylvania
and the United States,1990-2001 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31
Table 7. State Spending for Medicaid as a Percent of Total State
Spending, Pennsylvania and the United States, 1990-2001 . . . . . . . . . . . . . 31
Table 8. Medicaid Long-Term Care Spending In Pennsylvania,
FY1990-FY2001 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33
Table 9. Medicaid Spending in Pennsylvania, Total Spending and
Long-Term Care Spending, by Category, and Percent Change,
FY1990-FY2001 in Constant 2001 Dollars . . . . . . . . . . . . . . . . . . . . . . . . 34
Table 10. Pennsylvania Department of Aging (PDA) Budget,
FY2001-FY2002, by Source of Funds . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38
Table 11. Federal and State Spending for Institutional and Community
Services for Persons with Mental Retardation/Development
Disabilities in Pennsylvania, 1990 and 2000 . . . . . . . . . . . . . . . . . . . . . . . . 39
Table A-1. Population in Large State Facilities for Persons with Mental
Retardation/Developmental Disabilities, Closure Date, and
Per Diem Expenditures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63
Acknowledgments
CRS wishes to acknowledge the significant time and contributions of the many
state officials and stakeholders who provided information on long-term care services
in the Commonwealth of Pennsylvania. Without their invaluable experience and
insight, this report would not be possible. We would particularly like to
acknowledge officials from the Pennsylvania Intra-Governmental Council on Long-
Term Care; the Department of Aging; the Department of Public Welfare; and the
Department of Health. We also would like to thank the numerous advocates and
providers who provided valuable perspectives on the long-term care services delivery
system in Pennsylvania.
The authors also gratefully acknowledge the excellent assistance of Charlotte
B. Foote 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 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 ten 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
Pennsylvania. Reports on the other nine states and an overview report will be
available during 2003.
Home and Community-Based Services –
States Seek to Change the Face of Long-
Term Care: Pennsylvania
Introduction: Federal Legislative Perspective
States choosing to
The Social Security Amendments of 1965, which
modify their programs for
created the Medicaid program, required states to
l o n g - t e r m c a r e f a c e
provide skilled nursing facility services under their
s i gn i fi can t challenges.
state Medicaid plans, and gave nursing home care the
Financing of nursing home
same level of priority as hospital and physician
services.
care has dominated long-term
care spending for decades.
“Section 1902 (a) A State plan for medical assistance
The federal financing
must provide for inclusion of some institutional and
structure that created
some noninstitutional care and services, and, effective
i n cen t i ves to support
July 1, 1967, provide (A) for inclusion of at least ... (1)
inpatient hospital services ...; (2) outpatient hospital
institutional care reaches
services; (3) other laboratory and X-ray services; (4)
back to 1965. A number of
skilled nursing home services (other than services in
converging factors have
an institution for tuberculosis or mental diseases) for
supported reliance on nursing
individuals 21 years of age or older; (5) physicians’
home spending. Prior to
services . . . .;” P.L. 89-97, July 30, 1965.
enactment of Medicaid,
homes for the aged and other
public institutions were
financed by a combination of direct payments made by individuals with their Social
Security Old Age Assistance (OAA) benefits, and vendor payments made by states
with federal matching payments on behalf of individuals. The 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
eliminated the distinction between skilled nursing facilities and intermediate care
1 CRS Report 83-181, Nursing Home Legislation: Issues and Policies, by Maureen Baltay.
CRS-2
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
Since its inception, Medicaid has been the predominant
there are about 17,000 nursing
payor for nursing home care. In 1970, over $1 billion was
homes with 1.8 million
spent on nursing home care through Medicaid and
beds.3)
Medicare. Federal and state Medicaid payments
accounted for almost all of this spending – 87%. Medicaid
spending for nursing home care grew by 50% in the three-
During the latter part of
year period beginning in 1967.
the 1960s and the 1970s,
nursing home care attracted a
In FY2001, Medicaid spent $53.1 billion on institutional
care (for nursing homes and care in intermediate care
great deal of congressional
facilities for the mentally retarded).
oversight as a result of
concern about increasing
federal expenditures, and a
pattern of instances of fraud
and abuse that was becoming evident. Between 1969 and 1976, the Subcommittee
on Long-Term Care of the Senate Special 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 referred to 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 two 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 two
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
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.
CRS-4
through waiver of federal law, within state-defined eligibility requirements, service
availability, and limits on numbers of persons served.
CRS-5
A CRS Review of Ten States: Report on
Pennsylvania
Pennsylvania’s policy stance on long-term care is oriented toward improving
options for home and community-based care for all populations in need of care and
stemming the growth of surplus institutional care support. Its guiding principles are
to: control surplus growth of nursing home beds; support consumer choice;
encourage expansion of home and community-based services; fund services rather
than capital construction; and assure quality of care.6
Over the last two decades, Pennsylvania has documented the issues it has
confronted in attempting to provide services to persons with disabilities.
Pennsylvania officials have produced a variety of documents on long-term care,
primarily through its Intra-Governmental Council on Long-Term Care. State reviews
have produced the following findings and recommendations:7
! the need for long-term care services is growing and is driven by an
increasing older population and the desire by virtually all persons
with disabilities to live in home and community-based settings,
rather than institutions;
! institutional care financing should be constrained and more effort
should be placed on supporting home and community-based care;
! fragmentation and duplication exists in the planning, management
and delivery of services among state agencies;
! access to long-term care services is difficult for many, especially low
and moderate income persons who do not qualify for Medicaid.
Persons in need of care must generally become impoverished before
they qualify for Medicaid assistance;
! cost-sharing mechanisms should be encouraged and strengthened to
spread the burden of payment of long-term care services by public
and private sources; and
! a system-wide shortage of frontline long-term care workers
represents a serious and growing problem and threatens access to
6 Pennsylvania Department of Public Welfare, Office of Medical Assistance Programs,
Commonwealth of Pennsylvania, Long Term Care In Pennsylvania. Briefing Book prepared
by the Department of Public Welfare. Apr. 22, 2002. (Hereafter cited as Long-Term Care
in Pennsylvania, Briefing Book.)
7 Pennsylvania Intra-Governmental Council on Long-Term Care, Long-Term Care for the
21st Century: A Time for Change, Sept. 9, 1996, p. 20. Reviews by various agencies in
state government include State Long-Term Care Plan, 1982; Human Services CHOICES
Report, 1986; Report of the Pennsylvania House Select Committee on Long-Term Care,
1988; OPTIONS in Long-Term Care: An Interim Report of the Pennsylvania Intra-
Governmental Council on Long-Term Care; and Intra-Governmental Council Report, 1996;
Pennsylvania’s Frontline Workers in Long-Term Care, prepared by the Polisher Research
Institute at the Philadelphia Geriatric Center for the Pennsylvania Intra-Governmental
Council on Long Term Care, Feb. 2001; Home and Community-Based Services Barriers
Elimination Work Group Report, Mar. 2002; Pennsylvania Intra-Governmental Council on
Long-Term Care Transition Report (to the Governor), Nov. 2002.
CRS-6
services by persons with disabilities and quality of care across
settings.
Summary Overview8
Overview
! Pennsylvania’s guiding principles in long-term care are to: control
surplus growth of nursing home beds; support consumer choice;
encourage expansion of home and community-based services; fund
services, rather than capital construction; and assure quality of care.9
! Long-term care has high prominence among state officials. This is
exemplified by significant state funding of services as well as by the
creation of the Pennsylvania Intra-Governmental Council on Long-
Term Care, first by Executive Order of the Governor, and then later
by the General Assembly. The Council has produced a number of
high-profile reports.
Demographic Trends
! An aging population poses challenges for the state. Pennsylvania’s
population age 65 and older – 1.9 million persons in 2000 –
represents 15.6% of its total population, ranking it second highest in
the nation, following only Florida.
! Its population age 85 and older – the group in greatest need of long-
term care services – grew by 38.3% from 1990-2000, ranking
seventh highest in the nation. Persons aged 85 and over with two or
more limitations in activities in daily living (ADLs) are estimated to
grow by 22% by 2010.
Administration of Long-Term Care Programs
! The Department of Public Welfare (DPW) is one of the largest state
human service agencies in the nation with over 23,000 employees.
DPW administers the Medicaid program and 10 of Pennsylvania’s
11 Medicaid Section 1915(c) home and community-based services
waivers for persons with disabilities. The Department of Aging
administers the home and community-based services waiver
program for the elderly.
! There is general recognition among state officials and stakeholders
that issues of coordination of management and delivery of services
among the various state and local levels is difficult to achieve. The
8 Information based on Pennsylvania 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.
9 Long-Term Care in Pennsylvania, Briefing Book.
CRS-7
Intra-governmental Council on Long-Term Care, housed in the
Department of Aging, was established to address issues around
policy coordination among the various departments.
Trends in Institutional Care
! The number of nursing homes in Pennsylvania has remained fairly
stable over the last 20 years. The number of beds per 1,000 elderly
persons is somewhat lower than the national average. The
occupancy rate is 89.7%, higher than the national average of 80.8%.
Pennsylvania policy entails a number of strategies that are designed
to control growth in surplus nursing home capacity financed by
Medicaid.
! The type of care provided to persons with mental retardation and
developmental disabilities has changed dramatically over the last
several decades, moving from care in large institutions to care in
small group homes and home settings. Partly in response to
litigation, Pennsylvania has closed 17 large state-supported
institutions for persons with mental retardation and significantly
downsized others since 1976.
Trends in Home and Community-Based Care
! There has been slow but steady expansion of Medicaid Section
1915(c) home and community-based services funding, but
institutional care still is predominant. In FY2001, less than 1 of
every 5 Medicaid dollars spent on long-term care was for home and
community-based care. Pennsylvania administers 1110 waiver
programs for persons with disabilities, each covering discrete
populations.
! Pennsylvania has developed two unique state-funded home and
community-based service programs that are financed by the state
lottery and from the state’s tobacco settlement funds. These
programs provide services to persons who do not meet state
Medicaid financial eligibility requirements, but who cannot afford
the full cost of home and community-based care. Cost sharing is an
important component of both programs.
! Area agencies on aging play a key role in performing case
management for adults with disabilities. They conduct assessment
of need for services using a standardized assessment tool.
! Pennsylvania devotes significant state resources toward providing
services to persons with mental retardation. Of the almost $1.6
billion spent from both federal and state sources in 2000, about 52%
came from state funding. About 72% of the total was for community
services.
10 One of the 11 Medicaid Section 1915(c) home and community-based waiver programs
covers infants, toddlers and families; this waiver is outside the scope of this report.
CRS-8
Long-Term Care Spending
! Long-term care comprises a significant portion of M e d i c a i d
spending in Pennsylvania – 47% of all Medicaid spending was
devoted to long-term care in FY2001 ($5.1 billion out of $10.9
billion). Nursing home spending represented more than one-third of
all Medicaid spending.
! As a share of Medicaid long-term care spending, nursing home
spending increased from 63% to 72% from FY1990-FY2001. At the
same time, Medicaid spending for institutions for persons with
mental retardation decreased from 29% to 9.5%.
! In FY2001, Pennsylvania spent almost $880 million on Medicaid
Section 1915(c) home and community-based services waiver
programs, a 627.3% increase from FY1990. About three-quarters of
waiver services spending is for persons with mental retardation and
developmental disabilities.
Issues in Financing and Delivery of Long-Term Care
! A recurring theme discussed by state officials is the view that the
federal financing system under Medicaid guarantees heavy use of
institutional care. This is largely due to the fact that nursing facility
care is an entitlement under Medicaid for persons needing such care
who meet its eligibility criteria. In the view of state officials, the
impetus for heavy reliance on institutional care is built into the
incentive structure for providers, resulting in funding disparities
between institutional and home and community-based care.
! Pennsylvania officials indicated that they want to move to a system
that relies more on home and community-based services, and that
consumers should be given clear choices regarding their options,
with adequate supports to stay at home and in the community.
! State officials indicated that the Medicaid Section 1915(c) home and
community-based services waiver programs have significantly
expanded opportunities for many people with disabilities to receive
services they would not have absent the waiver. However, the
waivers have created another set of categorical requirements. Each
program is identified as a discrete, distinct program resulting, state
officials say, in a silo approach to service provision. The procedures
locating the appropriate waiver or other service program and the
administering agency, and trying to fit a person’s needs into the
prescribed waiver requirements, can be burdensome on clients as
well as providers.
! State officials and stakeholders indicated that a systemwide problem
facing the long-term care system is a significant shortage of frontline
workers to care for persons with disabilities residing in both
institutions and in the community.
CRS-9
Demographic Trends
Pennsylvania is one of most populous states in the United States. With 12.3
million people in 2000, it ranks as the sixth largest state. It also is one of the states
with the oldest population. Its population aged 65 and older – 1.9 million persons in
2000 – represents 15.6% of its total population ranking it second highest in the
nation, following only Florida (Table 1).
Pennsylvania’s total elderly population grew by less than 5% in1990-2000 but
its population age 85 and older, those in greatest need for long-term care services,
grew by 38.3%. The proportion of Pennsylvania’s population aged 85 and older is
seventh largest in the nation. From 1990 to 2000, the state experienced a 21%
increase in the population aged 75 to 84, those at near risk of needing assistance with
daily tasks (Table 1).
Table 1. Pennsylvania Population Age 65 and Older,
1990 and 2000
1990
2000
2000
1990-
population
Percent of
Percent of
2000
rank in U.S.
total
total
percent
(based on
Age
Number
population
Number
population
change
percent)
65+
1,829,106
15.4
1,919,165
15.6
4.9
2
65-74
1,070,021
9.0
969,272
7.9
-9.4
3
75-84
587,249
4.9
712,326
5.8
21.3
2
85+
171,836
1.4
237,567
1.9
38.3
7
Under 65
10,052,537
84.6
10,361,889
84.4
3.1
50
Total
11,881,643
100
12,281,054
100
3.4
6
Source: U.S. Census Bureau. Profile of General Demographics for Pennsylvania: 1990. 2000:
[http:// www.census.gov/census2000/states/pa.html]. Percentages may not sum to 100 due to rounding.
Pennsylvania, as all states, will experience large increases in its older population
over the next 25 years. By 2025, its 65 and older population will increase by 40%
(see Figure 1). In 2025, 21% of Pennsylvania’s population will be 65 years or older,
compared to 18.5% for the nation (Table 2). While its older population will not
experience a percentage growth as large as that of the total U.S. elderly population,
its proportion of older people will exceed that of the nation and it will continue to
outrank many other states.
CRS-10
Figure 1. Percentage Population Increase in Pennsylvania,
2000-2025
6 0 %
6 5 +
4 0 %
2 0 %
8 5 +
0 %
To ta l
-2 0 %
U n d e r 6 5
2 0 0 5
2 0 1 0
2 0 1 5 2 0 2 0
2 0 2 5
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
Populations Projections: Every Fifth Year.
Table 2. Elderly Population as a Percent of Total Population,
Pennsylvania and the United States, 2025
Percent of total
Percent of total
population,
population,
Age
Pennsylvania
United States
65+
21%
18.5%
65-74
11.8%
10.5%
75-84
6.7%
5.8%
85+
2.4%
2.2%
Under 65 population
79%
81.5%
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
Populations Projections: Every Fifth Year.
CRS-11
Need for Long-Term Care
Table 3 presents estimates of the number of persons aged 18 and over who have
limitations in two or more activities of daily living (ADLs) in Pennsylvania. These
estimates were derived from data generated by The Lewin Group, Inc., and combine
national level data on persons with disabilities with state-level data from the U.S.
Census Bureau on age, income, and broad measures of disability. Persons aged 85
and over with two or more limitations in ADLs are estimated to increase by 22% by
2010. This growth will place pressure on public and private long-term care
resources.
Table 3. Estimated Number of Persons with Two or More
Limitations in Activities of Daily Living (ADLs), by Poverty Status,
in Pennsylvania
2002
2005
2010
Percent
of
poverty
Persons with 2+ ADLs by age and income
18-64
65+
85+
18-64
65+
85+
18-64
65+
85+
Up to
7,614
7,474
1,955
7,717
7,536
2,125
7,810
7,730
2,392
100%
Up to
11,350
20,178
5,552
11,504
20,412
6,036
11,641
20,791
6,796
150%
Up to
14,860
29,414
7,983
15,062
29,752
8,678
15,242
30,242
9,770
200%
All
31,924
66,274
19,065
32,361
67,155
20,724
32,741
68,395
23,334
incomes
Source: CRS analysis based on projections generated by The Lewin Group, Inc. through the HCBS State-by-State
Population Tool available on-line from: [http://www.lewin.com/cltc]. The Lewin Group Center on Long Term Care
HCBS Population Tool, by Lisa M.B. Alecxih, and Ryan Foreman (2002).
CRS-12
Administration of Long-Term Care Programs
State and Local Administration
Responsibility for administration and management of long-term care services
for the elderly and persons with disabilities is spread among several state agencies.
In addition, various sub-state agencies have responsibility for various aspects of long-
term care administration and services. Figure 2 displays an organization chart of
state and local agencies with responsibilities for administration of long-term care.
The Department of Aging administers home and community-based services for
the elderly, including the Medicaid 1915(c)waiver program for the elderly known as
the Pennsylvania Department of Aging waiver (PDA) and Older Americans Act
programs.
The Department of Aging is host to the Intra-Governmental Council on Long-
Term Care, which serves in an advisory role and is chaired by the Secretary of the
Department of Aging. The Council’s mission is to study Pennsylvania’s long term
care system and to provide options and recommendations to the Governor, the
General Assembly, and state government administration on consumer access to the
long-term care system, financing of long-term care services, and ways to streamline
the system so that it will be responsive to the needs of consumers and their families.
The Council was established by the Select Committee on Long-Term Care in the
Pennsylvania House of Representatives in 1986. Then, in March 1988 the Council
was created by Executive Order of the Governor, and in December 1988, Act 185
codified the Council in Pennsylvania state law. In 1996, Governor Tom Ridge
appointed members representing diverse areas related to long-term care. The Council
is comprised of 37 members, including 5 members of the Cabinet, 4 members of the
General Assembly, representatives from consumer groups, and service providers
appointed by the Governor. The Council has developed numerous high-profile state
reports.11
The Department of Public Welfare (DPW) is one of the largest state human
service agencies in the nation with over 23,000 employees. DPW administers the
Medicaid program, including Pennsylvania’s Section 1915(c) waiver programs.
DPW and the Department of Aging jointly administer the Section 1915(c) waiver
program for the elderly. DPW also houses the Office of Mental Retardation, which
administers state-operated institutions for the mentally retarded; and the Office of
Social Policy which is responsible for the licensing of the state’s personal care
homes.
The Department of Health is responsible for licensing and certification of
nursing homes and home health agencies. The Department conducts over 5,000
nursing home inspections each year, including licensure and certification surveys,
11 For example, Options in Long-Term Care, February 1990; Long-Term Care for the 21st
Century: A Time for Change, Sept. 1996; Pennsylvania’s Frontline Workers in Long-Term
Care, Feb. 2001; Home and Community-Based Services Barriers Elimination Work Group,
Mar. 2002.
CRS-13
follow-up surveys and complaint investigations. It also operates a nurse aide registry
containing information on over 154,000 nurse aides in Pennsylvania.
CRS-14
Figure 2. Pennsylvania Long-Term Care System
Source: Prepared by CRS based on Pennsylvania documents.
CRS-15
Responsibility for Financial and Functional Eligibility
Determinations
Pennsylvania has 67 counties and 67 county offices in about 80 locations in the
state. Responsibility for various aspects of administration and management of long-
term care services is divided among the county agencies and 52 area agencies on
aging that operate on a individual-county or multi-county basis.
County assistance offices (under supervision of the Office of Income
Maintenance, DPW) are uniformly responsible for determination of Medicaid
financial eligibility for persons applying for nursing home and home and community-
based care for persons with disabilities of all ages – persons aged 60 and older,
younger persons with disabilities aged 18-59, and persons with mental retardation of
all ages.
The state is phasing in use of an on-line financial eligibility determination
system, Commonwealth of Pennsylvania Application for Social Services
(COMPASS).12 The system is intended to serve as single access point for a wide
variety of programs, including health care coverage, food stamps, and cash assistance
benefits. Use of COMPASS for eligibility determinations for long-term care services
is to be phased in by 2003.
Area agencies on aging (authorized under Title III of the Older Americans Act)
carry out a number of long-term care responsibilities for both persons aged 60 and
older as well as for younger persons with disabilities aged 18 through 59 under
contract with DPW. Area agencies perform pre-admission screening for persons of
all ages applying for nursing home care. They also are responsible for determining
level of care and services assessment for persons aged 18 and over applying for home
and community-based care under Medicaid waiver and state-funded programs.
Area agencies conduct client assessments and determine need for services using
a uniform statewide tool, the OPTIONS Assessment Forms.13 There are two forms
used, one for community services assessments, and one for nursing facility
assessments. The assessment tool is a comprehensive instrument that assesses a
person’s physical and cognitive functioning, limitations in activities of daily living
(ADLs) and instrumental activities of daily living (IADLs), availability of formal and
informal supports, physical environment and social participation, among other
variables. This tool has been the standard instrument used since the 1980s.
County offices of mental retardation are responsible for case management and
service delivery for persons with mental retardation across the state. The Mental
Health/Mental Retardation Act of 1966 established the framework for Pennsylvania’s
12 [www.compass.state.pa.us].
13 Pennsylvania Department of Aging. Options Assessment Forms (Comprehensive
OPTIONS Assessment Form) and the Nursing Facility OPTIONS Assessment Form.
CRS-16
service system for people with mental retardation.14 The statute set out state
responsibilities for funding and licencing of state institutions for mental retardation.
In the 67 counties, there are 46 county offices that are responsible for assessment and
case management of services for persons with mental retardation.
Pennsylvania’s Long-Term Care Services for the
Elderly and Persons with Disabilities
Trends in Institutional Care
There are almost 780 nursing homes with about 95,000 beds in Pennsylvania.
According to state officials, the total number of facilities has remained fairly stable
over the last 20 years. The number of beds per 1,000 elderly persons is somewhat
lower than the national average. There are about 51 beds per 1,000 persons aged 65
and older, and 401 beds per 1,000 elderly persons aged 85 and older, as compared to
53 and 435, respectively, for the United States as a whole (Table 4). The occupancy
rate is 89.7%, higher than the national average of 80.8%.
Table 4. Nursing Home Characteristics in Pennsylvania
and the United States
(data are for 1999-2000 unless otherwise noted)
Characteristic
Pennsylvania
United States
Number of facilities
778 17,023
Number of residents
84,588
1,490,155
Number of beds
95,083 (2000)
1,843,522
Number of Medicaid beds
88,950 (2001)
841,458
Number of total beds per 1,000 pop. aged 65 and older
51.1 (2000)
52.7
Number of total beds per 1,000 pop. aged 75 and older
100.1 (2000)
111.1
Number of total beds per 1,000 pop. aged 85 and older
401.2 (2000)
434.8
Occupancy rate
89.7% (2000)
80.8%
Source: Data come from the following sources: For Pennsylvania: For total beds and occupancy, and
facilities, Pennsylvania Department of Health, Bureau of Health Statistics, Data from the long-Term
Care Facilities Questionnaire; for Medicaid beds, Long-Term Care in Pennsylvania Briefing Book,
Department of Public Welfare, Apr. 22, 2002; for residents, American Health Care Association, Facts
and Trends: The Nursing Facility Source book. For the U.S., American Health Care Association.
14 County offices of mental health and mental retardation are authorized under Pennsylvania
state statute, the Mental Health and Mental Retardation Act of 1966. Pa. State. Ann. 50.
CRS-17
As in most states, long-term care in Pennsylvania is dominated by spending for
nursing home care. In FY2001, of total long-term care spending under Medicaid,
72% was spent on care in nursing homes. Pennsylvania state officials as well as
long-term care stakeholders indicate that the financing incentives inherent in
Medicaid cause a bias toward institutional care spending.
Changes in financial incentives and provider culture regarding use of institutions
are difficult to achieve. Nonetheless, Pennsylvania policy entails a number of
strategies that affect institutional care utilization.
Development of Medicaid Nursing Home Participation Review Program (PRP).
In 1996, the State Assembly allowed the state’s certificate of need (CON) program
for health care providers to sunset. After that time, the number of nursing home
facilities and beds increased. In recognition of this and the state’s goal to control
surplus growth, in 1998, the Department of Public Welfare instituted the PRP – a
process of reviewing the need for nursing home facilities and beds that participate in
Medicaid. Nursing homes seeking to participate, either as new facilities, or as an
expansion of existing facilities, must be approved by DPW through the PRP. The
main objective of the PRP is to “respond to consumers’ desire to age in place by
redirecting limited state resources from higher-cost, less preferable institutional
settings to more cost-effective home and community-based services, through
encouraging the development of other components of the array of long-term care
services.”15
The state reviews an application from a provider on a case-by-case basis using
a number of criteria including Medicaid program need; availability of home and
community-based services in the area; and economic and financial feasibility. This
procedure is intended to implement the Department’s goals of promoting home and
community-based services and control the number of nursing home beds that enter
the market.
Implementation of Medicaid Section 1915(c) Waiver Program. In January 1999,
the state implemented its Section 1915(c) waiver program (Pennsylvania Department
of Aging waiver) for persons aged 60 and older on a statewide basis. The waiver
provides a wide range of home and community-based services to persons who meet
the nursing home level of care requirements and is intended to divert persons from
use of nursing homes. Area agencies on aging are under contract with DPW to carry
out level of care determinations for both home and community-based services under
the waiver program for the elderly and most younger persons with disabilities. Area
agencies also perform level of care determinations for nursing home care. According
to state officials interviewed, because area agencies are community-based
organizations, they have the capacity to access community-based services for those
persons who could be cared for in the community and to divert persons from nursing
homes when possible.
According to state officials, implementation of the PRP in January 1998, as well
as statewide implementation of the PDA waiver, have reduced utilization of
15 Long-Term Care In Pennsylvania, Briefing Book, p. 15.
CRS-18
Medicaid patient days.16 The average occupancy of Medicaid facilities declined from
92.1% in February 1998 to 88.8% in October 2001. Since January 1998, the number
of Medicaid-certified beds has dropped from 90,750 to 88,950 in 2001. The number
of facilities has dropped from 665 to 653 in 2001.17
In addition to these strategies to control Medicaid nursing home utilization, state
officials indicate that the characteristics of nursing home users have changed. Acuity
levels of patients entering nursing homes have increased in recent years. This is
attributed to a greater use of home and community-based services that delays entry
into nursing home care until older ages.
Trends in Home and Community-Based Care
Pennsylvania supports a wide range of home and community-based services for
the elderly and persons with disabilities, comprised chiefly of a series of Medicaid
Section 1915(c) waiver programs, and two state-funded programs for persons who
do not qualify for waiver services. The waiver programs, while intended to provide
a base of support to persons with disabilities, are targeted, carefully designed with
caps on the cost of services, and have very specific eligibility groups with stringent
income and asset tests. In addition, using state funds, the state has developed a
unique way to address some of the financial barriers that inhibit access to home and
community-based care through Medicaid. Two sources of funding, specifically the
Pennsylvania State Lottery and the state’s share of the tobacco settlement funds (see
section below on financing) open access to persons who otherwise would not qualify
financially for waiver programs.
Other actions the state has taken to improve information and access to home and
community-based care include: establishing a long-term care web-based helpline and
website [www.longtermcare.state.pa.us]; developing consumer-friendly publications
and a media campaign explaining the range of home and community-based services
available; establishing a program to allow persons residing in nursing homes to
transition to the community; and phasing-in a web-based financial eligibility
application process for long-term care.18
Although progress has been made in increasing options for home and
community-based care for the elderly and persons with disabilities, according to a
report authored by state officials and long-term care stakeholders, the state “has not
completely purged its long history of institutional bias from its long-term care
system.”19 The report indicated that in 2000, the state’s public funding supported
over 54,208 elderly and younger persons with disabilities in nursing homes – 92%
of the total – compared to 4,563 persons in home and community-based settings –
16 Ibid., p. 21.
17 Ibid., p. 18.
18 Pennsylvania Intra-Governmental Council on Long Term Care. Home and Community-
Based Services Barriers Elimination Work Group. Mar. 2002, p. 4. (Hereafter referred to
as Home and Community-Based Services Barriers Elimination Work Group.)
19 Ibid.
CRS-19
8% of the total. An additional 11,000 persons resided in personal care homes only
partially funded with public funds.20
Medicaid 1915(c) Waivers. Pennsylvania administers eight waiver
programs for the elderly and persons with disabilities (two waivers for persons with
mental retardation and developmental disabilities are discussed below and another
waiver for infants and children is outside the scope of this report). Certain general
principles apply to each of the waivers. First, in order to qualify for services, persons
must have income that does not exceed 300% of the Supplemental Security Income
(SSI) eligibility level ($1,656/month in 2003 for an individual) and must meet SSI’s
assets limit of $2,000 (for an individual).21 Second, except for one waiver program
(Elywn), all are operated on a statewide basis.
The following describes target groups, services, number of persons served, and
cost caps for each of the waivers (for more detailed information, see Appendix
Table A-1.)
! Pennsylvania Department of Aging (PDA) Waiver. The PDA waiver
provides a wide range of services for persons aged 60 and older.
Persons must meet the state’s requirements for nursing facility level
of care. Services available include attendant care; companion
services; environmental modifications; home-delivered meals; home
health services; home support services; adult day care services;
personal care services; personal emergency response system (PERS);
respite care; specialized medical equipment and supplies; and
transportation. The PDA waiver served 9,309 persons in State Fiscal
Year (SFY) 2001-2002 and 10,049 slots are approved for SFY2002-
2003. The cost cap for the PDA waiver is $35,000 (the equivalent
of 80% of the nursing facility rate, excluding the costs of case
management and administration) and is applied on an individual
basis. The average cost of the PDA waiver in SFY2001-2002 was
$8,136 per person.
! Attendant Care Waiver. The Attendant Care Waiver was initiated
to serve a group of persons who had been on a waiting list for a
previously state-funded program for persons with physical
disabilities (ACT 150 program). Persons eligible are those aged 18-
59 who meet the state’s requirements for nursing home eligibility as
well as meet the state’s definition of disability. They must also be
capable of selecting and supervising attendants, and of managing
their own financial and legal affairs. Services included in the
Attendant Care Waiver are: basic care services, such as helping the
consumer in and out of bed, wheelchair, and/or motor vehicle; and
assistance with routine bodily functions such as bathing, grooming
20 Ibid., p.5. Note: persons in personal care homes partially fund their own room and board
through their own SSI payments.
21 Certain items are excluded, such as an individual’s home; up to $2,000 of household
goods and personal effects; life insurance policies with a face value of $1,500 or less; an
automobile with value up to $4,500; and burial funds up to $1,500, among other things.
CRS-20
and eating. When a client in the attendant care waiver program turns
age 60, the PDA waiver can continue services and the client may
keep the same provider. The program has 2,396 DHHS approved
slots and served 1,804 persons in SFY2001-2002. The cost cap for
the Attendant Care Waiver is $38,059, which is assessed on a
statewide aggregate basis.
! Independence Waiver. The Independence Waiver provides a wide
range of services to persons age 18 years and over who have
substantial functional limitations in at least three of the following
areas: self-care; understanding and use of language; learning; self-
direction; capacity for independent living; and mobility. Persons
must meet the nursing home level of care. Those with a primary
diagnosis of a mental illness or with mental retardation, or who are
ventilator dependent are not eligible for services under this waiver.
Services include service coordination; assistance with daily living;
respite care; environmental accessibility adaptions; and specialized
medical equipment and supplies. A relatively small number of slots
are DHHS-approved – 403 as of December 2002. As of December
2002, 452 individuals were receiving services (As of December
2002, the state was in the process of amending its waiver to increase
the number of approved slots.) The aggregate cost cap is $42,116
(average per case).
! Michael Dallas Waiver. The target group for this waiver is persons
of all ages who are technology dependent (that is, those who require
technology to sustain life or replace a vital bodily function) and
whose private insurance has been exhausted. The waiver was
originally initiated for children in 1987, then was expanded in 2001
to include adults. Services provided include: case management;
private duty nursing; attendant care; respite; durable medical
equipment and nutritional supplements. The cost cap for this waiver
is $236,000 per year which is applied on an aggregate basis. Costs
range from $180,000 to $200,000 per year per individual. In
SFY2001-2002, 136 slots were DHHS-approved with 57 persons
enrolled.
! Elwyn Waiver. The only waiver program that is not statewide, this
waiver provides services to a specially targeted group of persons age
40 and over who are deaf, blind or deaf/blind who live in Delaware
County in an assisted living facility. The waiver was initiated to
provide assisted living services to persons who resided in a nursing
home that was being closed. A relatively small waiver, it has 45
DHHS-approved slots with 39 people enrolled in 2002. The annual
cost cap for this waiver is $23,000 and is applied on an individual
basis.
! AIDS Waiver. This waiver provides services to persons aged 21
through 64 who have symptomatic HIV and AIDS, who do not have
Medicare coverage, and who are not eligible for hospice care. The
waiver is administered by managed care plans in managed care areas
and under fee-for-service agreements in areas that are not covered by
managed care plans. Services include skilled nursing and home
health aid; homemaker services; supplies and nutritional
CRS-21
supplements not covered by Medicaid; and nutritional consultations
by registered dieticians. The waiver is approved to serve up to 250
people, and 78 people were enrolled in SFY2001-2002. The annual
cost cap is $14,000 per year and is applied on an individual basis.
! Commcare Waiver. The most recent waiver, initiated in April 2002,
the Commcare waiver provides services to prevent
institutionalization of persons with traumatic brain injury (TBI).
Persons must have substantial functional limitation in three or more
major life activities. Services include care coordination; personal
care; respite prevocational and habilitation and support services; and
supported employment, among others. Services may be provided to
persons living in group living arrangements with up to six beds. As
of December 2002, three individuals were being served under this
waiver which has received DHHS approval for 98 slots. The
aggregate cost cap for the wavier is $146,740.
State Programs. There are a number of pathways that establish Medicaid
eligibility for home and community-based long-term care services. These include
coverage of persons whose income does not exceed 300% of the federal SSI payment
level, as allowed under the Section 1915(c) waiver program and used for the Section
1915(c) waiver programs in Pennsylvania. However, despite use of this more liberal
standard, there are still many people who need home and community-based services,
but who cannot meet the income limits or resource tests under Medicaid, and who
cannot afford home and community-based services. Many of these persons could not
establish eligibility until they spend-down almost all their resources and income, and
by that time, are in danger of having to go into an institution. One of the issues many
states have confronted is how to provide services for such persons. Pennsylvania has
addressed this issue through two state-funded programs that provide services using
more liberal income or resource tests than required under the waiver programs.
These state-funded programs for the elderly provide services that are similar to
the PDA waiver, but expand eligibility requirements to include persons financially
ineligible for the waiver. The Bridge Program provides services to persons who
cannot meet the Medicaid resource test limitation, and the Options Program provides
services to persons who have income above the Medicaid limit for persons in the
waiver (300% of the federal SSI level). Both programs require different forms of
cost-sharing by participants.
The Bridge Program. Implemented for the first time in January 2002, this
program provides home and community-based services similar to those under the
PDA waiver, but to persons aged 60 and over who have assets greater than the $2,000
limit required under the waiver. Persons may have assets up to $40,000 and qualify
for services, but must still meet the waiver income test. The program is unique in its
cost-sharing system. Each beneficiary is required to pay 50% of the cost of direct
services, such as homemaker, chore, home-delivered meals, and home health care;
the remaining 50% is covered by the program. The cost-sharing system allows
persons with higher resources to receive services; and when they “spend down” their
resources, they may qualify under the Medicaid PDA waiver.
CRS-22
The Bridge Program is financed through the state’s tobacco settlement funds.
As of April 2002, 200 persons had enrolled in the program. The cost cap for the
Bridge program is the same as the PDA waiver.
Options Program. Financed through the Pennsylvania State Lottery, the
Options Program provides assessment, case management, and pre-admission
screening for persons aged 18 and over applying for nursing home care, and for SSI
eligible persons applying for residence in a domiciliary or personal care home. For
the elderly, the program supports a wide range of home care services similar to those
provided by the PDA waiver.
The unique aspect of the Options Program is its financial eligibility criteria.
Eligibility is based on a sliding scale of income with beneficiary cost-sharing.
Beneficiaries whose income is below 125% of the federal poverty level (FPL) are not
required to pay for services. (About two-thirds of participants fall into this category.)
Persons with income from 125% up to 300% of the FPL pay for services on a sliding
fee scale basis; persons with income above 300% are required to pay the full cost.
Unlike either the waiver or Bridge program, resources are not considered in
determining eligibility. The SSI limit on resources used to determine Medicaid
eligibility ($2,000 for an individual) disqualifies many persons who would otherwise
be eligible on the basis of income.
For SFY2001-2002 about 91,000 persons were served. The cost cap for the
Options program is $625 per month applied on an individual basis.
Family Caregiver Program. Inspired by former Pennsylvania Governor Casey,
the state initiated a family caregiver program in 1987, and it became statewide in
1991. This program served as a model for the Older Americans Act family caregiver
program that Congress enacted in 2000 (P.L. 106-501). The program, now funded
by both the Older Americans Act and state funds, as well as by the state lottery
funding, provides services to persons age 60 and older or persons with chronic
dementia or Alzheimer’s disease and their families.
Area agencies on aging assist family caregivers assess their needs in caring for
family members. Caregivers choose the services most needed to help them care for
their relatives. Services include assessment of need, counseling on coping skills and
caregiver training, respite, financial assistance to purchase supplies or services, one-
time grants for home adaptations, and benefits counseling.
Families receive assistance on a cost-sharing basis and may receive from $200
to $500 a month in services or caregiving supplies to assist with out-of-pocket
expenses. (The average monthly expenditure for recipients is about $350.)
In order to be eligible for assistance, family caregivers must provide the majority
of care and must be doing it without charge. Except for assessment, case
management, benefits counseling, and caregiver education and training, families
receive services and/or supplies on a cost-sharing basis, as follows:
! persons with income below 200% of the federal poverty level (FPL)
receive assistance without charge;
CRS-23
! persons with income between 200% up to 380% of the FPL receive
assistance on a sliding fee scale basis;
! persons with income of 380% of the FPL or more may receive
services but are not eligible for cash reimbursements.
About 10,000 persons receive services under the family caregiver program at
any given time. In FY2002-2003, the state will spend $17.8 million on the program
($11.5 from state funds and $6.3 from federal sources).
CRS-24
Pennsylvania’s Long-Term Care Services for
Persons with Mental Retardation and
Developmental Disabilities
Overview
Services to persons with mental retardation and other development disabilities
in the United States have changed dramatically over the last half of the 20th country
as a result of a number of converging factors. These include the advocacy efforts of
families and organized constituency groups, 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 significant litigation brought on behalf
of persons with mental retardation.22
Pennsylvania’s system of services for persons with mental retardation has been
influenced by a number of significant factors. These include:
! the passage of Pennsylvania’s Mental Health/Mental Retardation Act
of 1966, which established state responsibility for funding and
licensing of services, and made county government responsible for
program administration, service delivery and case management;23
! the 1977 settlement of Pennhurst State School and Hospital v.
Haldeman, which ordered the closure of a large state institution and
became one of the most important cases influencing care of the
persons with mental retardation in the United States;
! the initiation of the Medicaid Section 1915(c) home and community-
based waiver services option in 1983;
! a 1991 Pennsylvania initiative entitled Everyday Lives which set
forth values governing services for persons with mental retardation,
and a vision of self-advocacy, community services and supports for
families;
! a 1997 Multi-Year Plan which set forth actions to be accomplished
to improve self-determination for persons with mental retardation
and quality of care, including increased community services
options;24
22 For a detailed history of the development of services for persons with developmental
disabilities, see The State of the States in Developmental Disabilities by David Braddock,
Richard Hemp, Susan Parish, James Westrich. University of Illinois at Chicago. American
Association on Mental Retardation, Washington, 1998. (Hereafter cited as Braddock, et.
al., The State of the States in Developmental Disabilities, 1998.)
23 Pa. State. Ann. 50, Section 4101, et. al.
24 Pennsylvania Department of Public Welfare, Planning Advisory Committee to the Office
Of Mental Retardation, A Multi-Year Plan for Pennsylvania’s Mental Retardation Service
System, July 1997. (Hereafter cited as Office of Mental Retardation, A Multi-Year Plan.)
CRS-25
! a 1999 plan to reduce the size of waiting lists for services;25 and
! a 5-year plan initiated in 2002, Everyday Lives: Making It Happen,
which seeks to implement the vision for services developed by
stakeholders.26
There are an estimated 115,000 persons of all ages with mental retardation in
Pennsylvania. The State Fiscal Year 2002-2003 budget for services for persons with
mental retardation is $1.9 billion. More than 70% of the total budget supports 82,000
persons in a variety of home and community-based care settings.27
Trends in Institutional Care
The early history of services to persons with mental retardation nationwide 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 to
serving almost 200,000 individuals nationwide in 165 free-standing state-operated
mental retardation institutional facilities.28 Today, some states are still faced with the
legacy of large state-operated institutions.
In the nation as a whole and in Pennsylvania, over the last several decades,
many large state-operated institutions have been closed or downsized, a development
that has been prompted by litigation. One of the earliest and most publicized cases
on behalf of persons with mental retardation residing in these institutions was filed
in Pennsylvania in1976, Pennhurst State School and Hospital v. Haldeman. The case
was ultimately heard by the U.S. Supreme Court. The Pennhurst State School and
Hospital, opened in 1908, once housed over 4,000 individuals with mental
retardation in Chester County, Pennsylvania. In 1977, U.S. Judge Raymond
Broderick ordered the state-run institution to be closed after hearing evidence of the
facility’s abuse and neglect of patients in the case. Even decades later, this landmark
case continues to profoundly affect the care of mentally retarded children and adults,
as well as other individuals receiving long-term care in institutions.
Although parents of the Pennhurst residents initially filed the lawsuit to improve
conditions in the facility, their legal representative, the Public Interest Law Center,
encouraged them to focus on the broader issue of whether adequate care could ever
be achieved in large institutional settings, such as Pennhurst. The case ultimately
recognized the rights of citizens with mental retardation to have access to
community-based care. After more than a decade of legal battles, the
Commonwealth of Pennsylvania reached a settlement with the Association of
25 Pennsylvania Department of Public Welfare, Office of Mental Retardation, A Long Term
Plan to Address the Waiting List for Mental Retardation Services in Pennsylvania, Oct.
1999. (Hereafter cited as Office of Mental Retardation, A Long-Term Plan to Address the
Waiting List.)
26 Pennsylvania Office of Mental Retardation, Program Overview, 2002.
27 See website: [http://www.dpw.state.pa.us/omr]
28 Braddock, et. al., The State of the States in Developmental Disabilities, 1998.
CRS-26
Retarded Citizens (now known as the ARC), the families of the Pennhurst residents,
and the U.S. District Court in 1986. Pennhurst was closed in 1988. The state
eventually closed most of its state-run institutions for the mentally retarded and
placed residents in small community-based facilities with improved access to care.
In addition to profoundly altering the quality of care for the mentally retarded in
Pennsylvania, the case has provided a legal basis for other groups currently living in
institutional settings to argue for access to community-based services. Because a
settlement was reached with the plaintiffs, the impact of the lawsuit only directly
impacted the Commonwealth of Pennsylvania, but the implications of the lawsuit
were felt across the country as policies toward persons with mental retardation in
institutions began to shift. Another related Pennsylvania case, Youngberg v. Romeo,
originally filed in 1976 and later heard by the U.S. Supreme Court, established the
rights of residents to receive basic services and to be free of undue restraint.29
As in most states, the number of persons residing in large state institutions in
Pennsylvania has declined dramatically over the years partly as a result of litigation.
Since 1960, Pennsylvania has closed 17 large state facilities and significantly
downsized others. Some of these facilities date back to the very end of the 19th
century or early part of the 20th century. (See Appendix Table 2 for a list of the
institutions that have been closed and those in operation and their 2001 census.)
Persons living in large institutions with 16 or more persons declined from 43.7%
of all persons living in group residences in Pennsylvania to just under 30% in 2000.
This decline is primarily due to the downsizing and closure of the large state
institutions since 1990. In 1990, almost two-thirds of persons in large facilities were
residing in state institutions compared to 30% in 2000. The decline in the census in
large state institutions is not reflected in the use of large private institutions,
however. This is primarily due to the use of private facilities funded as intermediate
care facilities for the mentally retarded (ICFs/MR) under Medicaid. The proportion
of persons residing in these private facilities with 16 or more beds was 31% in 1990
and was about the same proportion (29%) in 2000 (Table 5).
The Medicaid home and community-based services waiver option (discussed
below) has allowed Pennsylvania to focus on development of small congregate care
options. In 2000, almost 22,000 persons with mental retardation were living in group
residential settings, with the majority (68%) living in residences of six or fewer
persons. This is an increase since 1990 when 47% of the total in group residences
were in small facilities (see Table 5).
29 Braddock, et. al., The State of the States in Developmental Disabilities, 1998, p. 9. See
also, U.S. Supreme Court, Youngberg v. Romeo 457 U.S. 307 (1982) Decided June 18, 1982.
CRS-27
Table 5. Persons with Mental Retardation and Developmental
Disabilities Served in Residential Settings, by Size of Setting,
1990, 1995, and 2000
Persons served by residential setting
1990
1995
2000
15,007
19,051
21,948
Setting by size
(100%)
(100%)
(100%)
6,567
8,000
6,376
16+ PERSONS
(43.8%)
(42%)
(29.1%)
Nursing facilities
not available
2,235
2,350
State institutions
4,043
3,460
1,969
Private ICFs/MR
2,041
1,989
1,869
Other residential
483
316
188
1,429
1,078
689
7 - 15 PERSONS
(9.5%)
(5.7%)
(3.1%)
Public ICFs/MR
0
0
0
Private ICFs/MR
1,135
724
463
Other residential
294
354
226
7,011
9,973
14,883
<6 PERSONS
(46.7%)
(52.3%)
(67.8%)
Public ICFs/MR
0
0
0
Private ICFs/MR
0
695
643
Other residential
7,011
9,278
14,240
Source: Disability at the Dawn of the 21st Century and the State of the States, David Braddock, editor,
with Richard Hemp, Mary C. Rizzolo, Susan Parish, and Amy Pomeranz, American Association on
Mental Retardation, Washington, 2002.
Pennsylvania has used the Medicaid waiver options to increase community
service options and small group residences and reduce the number by large facilities.
However, according to data compiled by Braddock et. al., Pennsylvania ranked only
25th in the Nation in its use of small facilities (based on the percent of individuals in
residences of six or fewer persons).30 There is a belief on the part of state officials
and stakeholders that the use of larger facilities should be further reduced in keeping
with the state’s commitment to community-based care. The state’s 1997 Multi-year
30 Disability at the Dawn of the 21st Century and the State of the States, David Braddock, ed,
American Association on Mental Retardation, Washington, 2002, p. 86. (Hereafter cited
as Braddock, Disability at the Dawn of the 21st Century, 2002.)
CRS-28
Plan recommended that the Office of Mental Retardation move, over a 5-year period
beginning in 1997-98, 1,500 persons who resided in large public facilities to
community living services.31 Data compiled by the Office of Mental Retardation
show that in 2001, about 1,700 persons resided in state facilities. Another goal of the
Multi-Year Plan was to transfer 2000 people from private ICFs/MR facilities to
services under the waiver program.32
Trends in Home and Community-Based Care
As the number and size of facilities has decreased over the years, the state has
made significant use of Medicaid financing for community-based care. In
Pennsylvania, as in many states, the Medicaid Section 1915(c) waiver program is the
chief source of revenue for home and community based services for this group.
Unlike the service system for the elderly and disabled where the state has access to
state lottery and tobacco settlement funds to complement federal sources, the waiver
program is considered the chief financing source for community-based care.
Medicaid 1915(c) Waivers. Consolidated Waiver for Individuals with
Mental Retardation. The largest waiver program, both in terms of persons served
and expenditures for any one population group with disabilities in Pennsylvania, is
the Consolidated Waiver for Individuals with Mental Retardation. This waiver has
16,491 slots approved by Center for Medicare and Medicaid Services (CMS) for
SFY2002-200333 and provides a wide range of services to persons age 3 and older
who have mental retardation.34 Persons with developmental disabilities who do not
have mental retardation are not generally covered under this waiver, but can receive
services under the Omnibus Budget Reconciliation Act (OBRA) waiver, described
below.
A wide range of services are provided: including habilitation (residential and
day habilitation); prevocational services; supported employment; transportation;
respite care; private duty nursing; specialized therapies; and permanency planning for
children and youth. The cost cap is applied on an aggregate basis to individuals
receiving services across the state; the average per capita costs of waiver services for
2002-2003 is $52,143.35 About 13,614 persons were served in SFY2001-2002.
31 Office of Mental Retardation, A Multi-Year Plan, p. 10.
32 Ibid.
33 CMS has approved the following slots for this waiver: for July 1, 2001-June 30, 2002,
15,493; for July 1, 2002-June 30, 2003, 16,491; for July 1, 2003-June 30, 2004, 17, 387; and
for July 1, 2004-June 30, 2005, 18,279 slots. Letter from CMS Acting Regional
Administrator to Secretary of the Department of Public Welfare, Jan. 29, 2001. (Hereafter
cited as Letter from CMS, Jan. 29, 2001.)
34 In addition to the waivers described, the Department of Public Welfare, Office of Mental
Retardation administers a Medicaid Section 1915(c) waiver program for infants and children
which is outside the scope of this report.
35 Letter from CMS, Jan. 29, 2001.
CRS-29
The Person/Family Directed Waiver. This waiver provides services to the same
population and with similar services as the Consolidated Waiver. The chief
differences between the two waivers is a lower cost cap and the fact that this waiver
is applied on an individual, rather than aggregate basis. The cost cap for this waiver
is $21,225 for SFY2002-2003. About 6,218 persons were served under this waiver
in SFY2001-2002. For SFY2002-2003, 7,361 slots are approved.
OBRA Waiver. A third wavier, which focuses on a broader category for persons
with developmental disabilities, is the OBRA Waiver.36 The purpose of the OBRA
waiver37 is to move persons with development disabilities from nursing homes to
community settings and to prevent persons with physical disabilities from being
institutionalized. Persons eligible are those with severe chronic disabilities attributed
to cerebral palsy, epilepsy, and other developmental disabilities whose onset occurred
prior to age 22; and whose conditions are likely to continue indefinitely and result in
substantial functional limitations in three or more major life activities.
A wide range of services is available under the OBRA waiver, including service
coordination; assistance with daily living; respite care; environmental adaptions;
assistive technology/specialized medical equipment and supplies; physical, speech
and occupational therapies; prevocational and supported employment services. A
relatively small waiver, it has 356 CMS approved slots. As of December 2002, about
377 consumers were being served. (As of December 2002, the state was in the
process of amending its waiver to increase the number of slots.) The aggregate cost
cap for the OBRA waiver is $129,949 for SFY2001-2002.
Financing Long-Term Care in Pennsylvania
In most states, the federal-state Medicaid program is the chief source of
financing for long-term care. In Pennsylvania, the Medicaid program accounted for
$5.1 billion in long-term care spending in FY2001. In addition, state resources,
through the Pennsylvania State Lottery and the state’s share of the tobacco
settlement, provided about $232 million for home and community-based long-term
care services for the elderly in SFY2001-2002. State revenue supported over $819
million for services for persons with mental retardation in 2000.
36 This waiver is administered by the Department of Public Welfare, Office of Social
Programs. It is listed here because the target group is persons who have developmental
disabilities. Waivers for persons with mental retardation are administered by the
Department of Public Welfare, Office of Mental Retardation.
37 The waiver is named after the federal law (the Omnibus Budget Reconciliation Act) that
required persons with mental retardation/developmental disabilities to be screened to
determine appropriate placement to meet their unique needs (PASSAR).
CRS-30
Medicaid Spending in Pennsylvania
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 19.6% of state
budgets for the United States as a whole in 2001.
In Pennsylvania, Medicaid spending is the largest single category of federal and
state spending. Of the state’s $40.7 billion budget in 2001, federal and state
Medicaid spending represented 28% – more than 1 of every 4 dollars. Federal and
state spending for Medicaid more than doubled as a proportion of the state’s budget
from 1990 to 2001, now outranking spending for elementary, secondary and higher
education, and public assistance combined (Table 6).
State spending for Medicaid services in Pennsylvania contributed from state
funds only (excluding federal funds)38 also increased during the 1990s. As a percent
of spending for all categories of state spending, state Medicaid spending increased
from 8.1% in 1990 to 19% in 2001 – almost 1 of every 5 dollars (Table 7).
38 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 Pennsylvania was
53.62%.
CRS-31
Table 6. Share of State Spending by Category, Pennsylvania
and the United States,1990-2001
Pennsylvania
All states
Expenditure category
1990
1995
2000
2001
2001
Total expenditures
$21,824
$30,753
$38,426
$40,694
$1,024,439
(in millions)
Medicaid
12.2%
25.5%
27.9%
28.3%
19.6%
Elementary and secondary
22.6%
20.2%
18.9%
18.8%
22.2%
education
Higher education
6.8%
6.1%
5.2%
5.4%
11.3%
Public assistance
5.3%
4.7%
2.8%
2.4%
2.2%
Corrections
1.7%
3.3%
3.9%
3.9%
3.7%
Transportation
12.0%
10.1%
10.0%
10.9%
8.9%
All other expenses
39.3%
30.1%
31.4%
30.3%
32.1%
Source: CRS calculations based on data from the National Association of State Budget Officers (NASBO), State
Expenditure Reports for 1992, 1997 and 2001. Data reported are for state fiscal years. Percentages may not
sum to 100% due to rounding.
Table 7. State Spending for Medicaid as a Percent of Total State
Spending, Pennsylvania and the United States, 1990-2001
Pennsylvania
All states
State spending
1990
1995
2000
2001
2001
Total state spending
$16,706
$22,026
$27,402
$28,694
$760,419
(in millions)a
State Medicaid spending
$1,350
$3,586
$5,055
$5,441
$85,141
(millions)b
State Medicaid spending as a
8.1%
16.3%
18.4%
19.0%
11.2%
percent of total state
spending
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. Includes intergovernmental transfers of
$287 million in 1995; $997 million in 2001; and $1,044 million in 2001. Intergovernmental transfers
were 8% of total state funding for Medicaid in 1995; 19.7% in 2000; and 19.2% in 2001.
Intergovernmental transfers are transfers of funds from local government entities (counties or cities)
to state government. Pennsylvania requires a 10% local match for Medicaid nursing home residents.
CRS-32
Medicaid Long-Term Care Spending in Pennsylvania39
Long-term care spending represented 47% of all federal and state Medicaid
spending in Pennsylvania in FY2001,40 declining slightly from 51% in FY1990.
(Table 8). Institutional care dominates long-term care spending and is a significant
share of all Medicaid spending. However, over the period FY1990-FY2001,
institutional care spending (including care in nursing homes and ICFs/MR) decreased
slightly as a share of total long-
term care spending, while spending
Medicaid long-term care financing in
for home and community-based
Pennsylvania at a glance:
services increased slightly over the
period. According to state
Medicaid long-term care spending in
Pennsylvania was $5.1 billion in FY2001 and
officials, these trends are due to a
represented 47% of all Medicaid spending in
number of factors implemented at
FY2001.
varying times during the 1990s.
These include implementation of
Spending for nursing homes represented more
the Provider Participation Review
than one-third of total Medicaid spending in
FY2001.
process for nursing homes which
participate as Medicaid providers;
Spending rate for nursing home care outpaced
statewide implementation of the
the state’s total Medicaid spending rate from
PDA waiver for persons aged 60
FY1990-FY2001 (196.7% compared to 182.3%).
and older; implementation of the
Spending for nursing home care increased as a
state-funded Bridge Program for
share of long-term care spending from 63% to
persons who do not meet Medicaid
72% from FY1990-FY2001. At the same time,
financial eligibility requirements;
spending for institutions for persons with mental
significant use of Medicaid’s
retardation decreased from 29% to 9.5%.
Section 1915(c) home and
Less than 1 of every 5 Medicaid dollars spent on
community-based waiver services
long-term care is for home and community-based
for persons with mental
services. However, there has a been a slow but
retardation; and closure of large
steady increase in spending for these services,
state institutions for persons with
primarily due to use of Section 1915(c) waiver
services.
m e n t a l r e t a r d a t i o n a n d
developmental disabilities.
The prominence of long-term care spending as a share of Medicaid is chiefly
attributed to spending for institutional care – nursing homes and ICFs/MR. In
FY2001, 38%, or $4.2 billion, of all Medicaid spending ($10.9 billion) was for care
in institutions. However, by far, most institutional care spending was for nursing
homes – $3.7 billion, almost 34% of all Medicaid spending (Table 9), and 72% of
all Medicaid long-term care spending (Table 8).
Although care in institutions still dominates Medicaid long-term care spending,
it has declined as a percent of long-term care spending from FY1990 to FY2001.
Institutional care represented 92.2% of total long-term care spending in FY1990,
39 This section discusses total Medicaid spending, both federal and state.
40 Total Medicaid spending using NASBO data differ from data shown in this table due to
differences in data collection methods.
CRS-33
declining to 81.6% in FY2001 (Figure 3 and Table 8). The decrease is attributed
solely to the spending decline for ICFs/MR care. Spending for care in ICFs/MR
decreased by almost 15% from FY1990 to FY2001 (in constant 2001 dollars), while
spending for nursing homes increased by almost 200% (Table 9 and Figure 3).
Moreover, spending for nursing home care outpaced total Medicaid spending which
increased by 182% (Table 9).
Table 8. Medicaid Long-Term Care Spending In Pennsylvania,
FY1990-FY2001
FY1990
FY1995
FY2000
FY2001
Long-term care spending as a % of Medicaid
51.0%
42.1%
49.1%
47.0%
spending
Institutional care spending as % of long-term
92.2%
88.6%
84.7%
81.6%
care spending
Nursing home spending as a % of long-term
63.2%
71.5%
74.9%
72.0%
care spending
ICFs/MR* spending as a % of long-term care
29.0%
17.1%
9.8%
9.5%
spending
Total home and community-based services
7.8%
11.4%
15.3%
18.4%
spending as a % of long-term care spending
HCBS waivers spending as a % of long-term
6.1%
9.0%
14.2%
17.2%
care spending
Source: CRS calculations based on CMS/HCFA 64 data provided by The Medstat Group, Inc. For
2000 and 2001, Burwell, Brian et al. Medicaid Long-Term Care Expenditures in FY2001, May 10,
2002. For 1995, Burwell, Brian. Medicaid Long-Term Care Expenditures in FY2000, May 7, 2001.
For 1990, Burwell, Brian. Medicaid Expenditures for FY1991. Systemetrics/McGraw-Hill Healthcare
Management Group, Jan. 10, 1992. (Hereafter cited as Burwell, Medicaid Expenditures FY1991-
FY2001.) 1990 total Medicaid spending, based on HCFA 64 data provided by Urban Institute,
Washington, (Hereafter cited as Burwell, Medicaid Expenditures FY1991-FY2001. Percentages may
not sum to 100% due to rounding.)
*Intermediate care facilities for the mentally retarded.
CRS-34
Figure 3. Institutional and Home and Community-Based Services as
a Percent of Medicaid Long-Term Care Spending in Pennsylvania,
1990-2001
100.0%
90.0%
80.0%
$1,425.3 million
$2,587.2 million
$4,170.2 million
70.0%
60.0%
50.0%
40.0%
30.0%
$332.5 million
$943.4 mil ion
20.0%
$120.6 million
10.0%
0.0%
1990
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
Institutional Care (Nursing Home and ICFs/MR)
Home and Community-Based Services (Home Health and HCBS Waivers)
Source: CRS calculations based on Burwell, Medicaid Expenditures FY1991-FY2001, 1990 total
Medicaid spending, based on HCFA 64 data provided by Urban Institute, Washington, D.C.
Table 9. Medicaid Spending in Pennsylvania, Total Spending
and Long-Term Care Spending, by Category, and Percent
Change, FY1990-FY2001 in Constant 2001 Dollars
(dollars in millions)
Percent change
FY1990-FY2001
(in constant 2001
Spending category
FY1990
FY1995
FY2000
FY2001
dollars)
Total medicaid
$3,033.5
$6,936.9
$10,322.2
$10,886.9
182.3%
Total long term care
$1,545.9
$2,919.6
$5,073.3
$5,113.6
160.2%
Total institutional care
$1,425.3
$2,587.2
$4,296.5
$4,170.2
130.1%
Nursing homes
$976.6
$2,087.6
$3,799.6
$3,684.0
196.7%
ICFs/MR
$448.7
$499.6
$496.9
$486.1
-14.8%
Total home and community-
$120.6
$332.5
$776.8
$943.4
515.5%
based services
Home health
$25.5
$69.3
$57.6
$64.7
99.4%
Personal care
$0.0
$0.0
$0.0
$0.0
0.0%
HCBS waivers
$95.0
$263.2
$719.2
$878.7
627.3%
Source: CRS calculations based on Burwell, Medicaid Expenditures FY1991-FY2001. 1990 total Medicaid spending,
based on HCFA 64 data provided by Urban Institute, Washington, D.C.
CRS-35
Figure 4. Medicaid Long-Term Care Spending by Category
in Pennsylvania, FY1990-FY2001
(in constant 2001 dollars)
$5.5
$5.0
$4.5
$4.0
$3.5
$3.0
$2.5
$2.0
Billions $1.5
$1.0
$0.5
$0.0
1990
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
Nursing Home Services
ICFs-MR
Home Health
HCBS Waivers
Source: CRS calculations based on Burwell, Medicaid Expenditures FY1991-FY2001, 1990 total
Medicaid spending, based on HCFA 64 data provided by Urban Institute, Washington, D.C.
Figures 5a and 5b depict changes in long-term care spending patterns from
FY1990 to FY2001. In FY1990, 29% of Medicaid long-term care spending was
devoted to care for persons with mental retardation in ICFs/MR, decreasing
dramatically to 9.5% in FY2001. At the same time, nursing home spending increased
from 63.2% in FY1990 to 72% in FY2001.
CRS-36
Figure 5a. Medicaid Long-Term Care Spending in Pennsylvania by
Category, FY1990
Total Medicaid LTC Spending, $1.546 bil ion
ICFs/MR
29.0%
Home Health
1.7%
HCBS
HCBS Waivers
7.8%
6.1%
Nursing Home
63.2%
Source: CRS calculations based on Burwell, Medicaid Expenditures FY1991-FY2001.
Figure 5b. Medicaid Long-Term Care Spending in Pennsylvania by
Category, FY2001
Total Medicaid LTC Spending, $5.114 billion
ICFs /MR
9.5%
Hom e Health
1.3%
HCBS
18.4%
HCBS Waivers
Nursing Home
17.2%
72.0%
Source: CRS calculations based on Burwell, Medicaid Expenditures FY1991-FY2001.
Although home and community-based services represent a small portion of
long-term care spending – less than 1 of every 5 dollars – the share of spending on
these services has increased in a slow but steady pattern over the period. Spending
on home and community-based services more than doubled as a share of long-term
care spending, increasing from 7.8% in FY1990 to 18.4% in FY2001 (Figures 5a
and 5b). This is primarily due to expansion of the various Section 1915(c) waivers
for persons with disabilities in Pennsylvania. Waiver spending increased from 6.1%
of long-term care spending to 17.2% in FY2001.
Increased funding for waiver services, however, does not affect all populations
equally. By far the majority of Medicaid waiver spending is for persons with mental
CRS-37
retardation and developmental disabilities. In FY2001, 88.6% of waiver spending
was for these persons, with less than 12% devoted to spending on the elderly and
other disability groups (Figure 6).
Figure 6. Medicaid Home and Community-Based Services Waiver
Spending by Target Population in Pennsylvania,
FY2001
Total Medicaid HCBS Waiver Spending, $878.7 million
Aged and Disabled
Waivers
10.7%
Other Waivers
MR/DD Waivers
0.7%
88.6%
Source: CRS calculations based on Medicaid HCBS Waiver Expenditures, FY1995 throughFY2001
by Steve Eiken and Brian Burwell, The Medstat Group, Inc., May 13, 2002.
State Spending on Home and Community-Based Services for
the Elderly
Medicaid funding represents only part of total funding for home and
community-based services – Pennsylvania devotes significant funding from state
sources. A long-standing source of support for services to persons aged 60 and older
is the Pennsylvania Lottery. The Lottery was established by the General Assembly
in 1971 with the primary purpose of generating funds to benefit older residents. It
is the only state lottery in the nation that dedicates all of its proceeds to programs for
older persons. Since 1972, it has contributed more than $12 billion to a number of
programs, including pharmaceutical benefits, home and community-based services,
tax rebate programs, transportation, and a variety of services supported by the 52 area
agencies on aging.41 Another significant source of support for home and community-
base services used by Pennsylvania is the state’s share of the tobacco settlement
41 Pennsylvania Department of Aging, Benefits and Rights for Older Pennsylvanians,Dec.
2001.
CRS-38
funds.42 While a large portion of both lottery and tobacco settlement funds is devoted
to the state’s pharmaceutical benefit program for the elderly, these sources also play
a significant role in funding home and community-based services.
The following table shows the Pennsylvania Department of Aging’s budget for
FY2001-2002 by source. State lottery and tobacco settlement funds are almost 80%
of the total budget, with almost 30% of the total budgeted for home and community-
based services. Federal funds (primarily Older Americans Act funds) represent only
about 14% of the total budget. The total shown does not include funding for the
Medicaid Section 1915(c) waiver services for the elderly, which in FY2001
amounted to over $260 million (these funds do not appear as part of the budget for
the Department of Aging, but rather are in the Department of Public Welfare).
Table 10. Pennsylvania Department of Aging (PDA) Budget,
FY2001-FY2002, by Source of Funds
Amount
Source and use of funds
(in millions)
Percent
Total PDA budget, FY2001-FY2002
$775.8
100.0
Lottery, total
$562.1
72.5
Home and community-based services administered by PDA*
203.1
26.2
Pharmaceutical program
359.0
46.3
Tobacco settlement, total
56.9
7.3
Home and community-base services administered by PDA
29.2
3.8
Pharmaceutical program
27.6
3.6
Federal funds**
109.0
14.1
Other
47.8
6.2
Source: Pennsylvania Department of Aging, Budgeted Fiscal Years, 2001/2002 and 2002/2003,
unpublished document.
*Does not include funding for Medicaid Section 1915(c) waiver funds for the elderly which is
included in the budget for the Department of Public Welfare.
**Includes Older Americans Act, and Medicaid funds for case management services.
42 For information on the tobacco settlement agreement, see CRS Report RL30058, Tobacco
Master Settlement Agreement (1998): Overview, Implementation by States, and
Congressional Issues, by Stephen Redhead.
CRS-39
Medicaid and State Spending on Services for Persons with
Mental Retardation and Developmental Disabilities
Federal and state spending for persons with mental retardation and
developmental disabilities was almost $1.6 billion in 2000 (Table 11). This
represented more than a 50% increase (in constant 2000 dollars) since 1990. Of total
2000 spending, a significant share – 52% – was contributed by state sources.
As discussed earlier, Pennsylvania has devoted considerable efforts to increasing
services in home and community-based settings to persons with mental retardation.
In 2000, almost three quarters of total spending was for home and community-based
services – $1.1 billion. Federal funding under the Medicaid Section 1915(c) waiver
program is an important component of spending for these services, representing
34.3%.
Of total institutional and home and community-based services spending in 2000,
22.4% was from federal waiver funds in 2000. This spending increased by almost
418% (in constant 2000 dollars) since 1990. The state has used the waiver to
dramatically increase federal Medicaid reimbursement for home and community-
based services, while at the same time it has decreased federal spending for
institutional services in constant dollars. Federal spending for institutional services
in Pennsylvania decreased by over 18% from 1990 to 2000 (in constant 2000 dollars).
Table 11. Federal and State Spending for Institutional and
Community Services for Persons with Mental
Retardation/Development Disabilities in Pennsylvania,
1990 and 2000
Percent
Percent of
change in
FY2000
constant 2000
1990
2000
total
dollars
Services
$ 837.4
$ 1,586.3
100%
52.6%
Congregate/institutional services
398.0
442.7
27.9%
-10.4%
Federal funds
220.0
223.2
14.1%
-18.2%
State funds
178.0
219.5
13.8%
-0.7%
Home and community-based
services
439.3
1,143.6
72.1%
109.7%
Federal funds
107.6
544.0
34.3%
307.3%
ICFs/MR funds*
(21.8)
(47.8)
3.0%
76.8%
HCBS waiver**
(55.3)
(355.5)
22.4%
417.9%
Title XX/SSBG funds***
(18.0)
(16.2)
1.0%
-27.6%
Other
(12.5)
(124.5)
7.8%
699.9%
State funds
331.7
599.6
37.8%
45.7%
Source: CRS calculations based on data presented in The State of the States in Developmental
Disabilities, by David Braddock et al., 1998. American Association on Mental Retardation,
Washington, p. 404 (for 1990 data). Unpublished data furnished by Richard Hemp, University of
Colorado (for 2000 data).
*Intermediate care facilities for the mentally retarded. These funds are used for community services.
**Home and community-based waiver (Section 1915(c)) of the Medicaid statute.
***Social Services Block Grant (Title XX of the Social Security Act).
CRS-40
Selected Issues in Financing and Delivery of Long-
Term Care Services in Pennsylvania
Pennsylvania officials and stakeholders have identified issues that pervade the
state’s long-term care system in a series of reports over the years. Prominent among
these is a report issued by a working group of the Pennsylvania Intra-Governmental
Council on Long Term Care in March 2002.43 The following discussion highlights
selected issues identified in that report and other state reports, as well as issues that
surfaced in CRS interviews with state officials, providers, and consumers.
Institutional Bias. A recurring theme in discussions of long-term care with
state officials is their view that the federal financing system guarantees heavy use of
institutional care. This is largely due to the fact that nursing facility care is an
entitlement under Medicaid for persons needing such care and who meet its
eligibility criteria. Financing of institutional care is a federal mandate; home and
community-based care is not. Although states may choose to provide home and
community-based services under various Medicaid options, state officials indicate
that state funding constraints and the provider system that was created as a result of
the institutional entitlement make it difficult to reorient the system. Pennsylvania
officials indicated that they want to move to a policy of expanding home and
community-based services, and that consumers should be given clear choices
regarding their options, with adequate supports to stay at home and in the
community.
Officials noted that while the rhetoric regarding changing the institutional bias
has intensified over the years, actually accomplishing this objective is difficult and
moving slowly. The impetus for heavy reliance on institutional care is built into the
incentive structure for providers resulting in funding disparities between institutional
care and home and community-based care. State officials and stakeholders indicated
that the institutional bias has created a provider culture that is counter to the desires
of the population needing long-term care services. This is exemplified in a number
of ways. Incentives in the service system are built around referral to nursing homes.
For example, hospital personnel are more likely to discharge persons needing long-
term care services to nursing facilities, rather than to home and community-based
settings which are seen by discharge planners as riskier choices for some people.
State officials noted that the risks of referring clients to nursing homes are somewhat
easier to manage given the 24-hour care provided. Home and community-based
providers have to take on greater risk because of complexities of planning for 24 –
hour care. Because home care options often do not involve a single service, they are
seen by many as more complicated than simply a referral to a nursing home unless
there are sufficient informal care providers to assist.
Once a person is referred and served in a nursing home, the likelihood of staying
in the institutional setting increases as more time is spent there. State officials
indicated that most persons become eligible for Medicaid within 6 months to a year
43 Pennsylvania Intra-Governmental Council on Long Term Care, Home and Community-
Based Services Barriers Elimination Work Group, Mar. 2002.
CRS-41
after entering a nursing home. And, once a person has resided in a nursing home for
2 or 3 months, it is difficult to discharge the person to community care. Clearly,
some people need care that can only be provided in an institution, for example, those
persons who have multiple, complex needs, weak or non-existent informal supports,
and who lack appropriate housing arrangements. The challenge to the long-term
care system is to respond with services that are appropriate to needs, and that would
use institutional care appropriately until a person can safely be cared for at home, and
to arrange a package of home and community-based services that will prevent the
person from entering or reentering an institution.
State officials state that the institutional bias is built into the federal
requirements for eligibility for the Section 1915(c) home and community-based
wavier program – that is, persons are only eligible for the waiver services if they
meet institutional functional eligibility criteria. State officials representing non-
elderly persons with disabilities indicated that using the “nursing home eligible”
criteria perpetuates a medical/institutional model of care, not appropriate for younger
persons who will need support throughout their lifetimes.
According to state officials, one method to ameliorate the institutional bias is
to control or downsize institutional capacity. The primary method used by
Pennsylvania to control institutional capacity is through approval of Medicaid beds
through the PRP process (described earlier) and through limitation on
reimbursements. This has had some impact on the supply of beds. Controlling the
supply of state institutions for the mentally retarded differs somewhat from that for
nursing homes. As pointed out earlier, the state has closed a number of care facilities
for persons with mental retardation in the past several decades, and could do so
because these facilities were operated by state government. Virtually all nursing
homes in the state are either privately owned (75% are for-profit and 25% are non-
profit)44 and therefore controlling or downsizing institutional capacity is not as direct
as in the case of state-operated facilities.
State officials indicated that the system should be changed so that nursing
homes are an exception rather than the rule. Home and community-based care
should be considered first, and then, if services are judged to be inappropriate or
unavailable, the alternative would be an institutional placement. In addition, state
officials note the need to have in place methods to divert people from nursing homes
who would be in danger of spending down their income and assets to establish
Medicaid eligibility.
Categorical Approach to Home and Community-Based Services.
State officials indicated that while the waiver programs have expanded opportunities
for many people with disabilities to receive services they would not have absent the
waiver, the waivers have created another set of categorical requirements.
Pennsylvania has eleven waivers in all, each targeting certain groups with certain
types of disabilities. In addition, there are six other state-funded programs for which
consumers might qualify. Each program is identified as a discrete, distinct program
resulting in a silo approach to service provision. The procedures of locating the
44 American Health Care Association, Nursing Facility Sourcebook, p. 134.
CRS-42
appropriate waiver or other service program and the administering agency, and trying
to fit needs into the prescribed waiver requirements, can be burdensome on clients
as well as providers.
Service packages, eligibility requirements, and financial caps on amounts of
services vary among the programs. In addition, for the federal waiver programs, a
person does not become eligible until his or her condition has deteriorated to the
“level of care” provided by an institution. Some people may not meet the narrow
categories of eligibility on the basis of disability that define eligibility for waivers.
State officials and stakeholders recommended that services should be promoted
without identifying different waiver programs that cover different services for
different populations. In addition, they recommended that there be more
comparability across waivers in order to prevent a silo approach and that the scope
and eligibility for waivers should be expanded.
Medicaid Eligibility Requirements and Access to Services. A number
of issues identified by state officials relate to Medicaid eligibility for home and
community-based services.
Medicaid Eligibility Income and Resource Limits. Persons needing long-term
care services paid for by Medicaid must have countable income and resource limits
established by the state within federal requirements. States may allow persons with
income up to 300% of the federal SSI level to become eligible for Section 1915(c)
home and community-based waiver services (in 2003, $1,656/month for an
individual); this is the level used by Pennsylvania for the waiver programs. In
addition, people may qualify if their assets do not exceed $2,000 for an individual
and $3,000 for a couple.45 While these requirements limit the number of people who
may become eligible for Medicaid, they also act as a barrier to many persons in need
of long-term care who live at home. For example, state officials indicated that people
in need of home and community-based care who live in their own homes do not feel
comfortable depleting almost all of their liquid assets that may be needed for
household expenses and emergencies. (Medicaid law allows states to use more liberal
standards under Section 1902(r)(2) of the Social Security Act; however, few states
have employed this option. States may permit persons with higher income and
resources to qualify for Medicaid, but this would expand eligibility groups and
therefore Medicaid costs.)
Pennsylvania, through its state-funded Bridge and Options Programs, has
addressed some of these Medicaid financial eligibility issues. These programs may
serve as models for other states that have the financial capacity to expand the pool
of eligibles. They may also serve as examples for any federal initiatives that may be
proposed to expand eligibility. (More liberal income and resources levels are used
under another federal Medicaid option for the “working disabled,” established by the
Ticket to Work and Work Incentives Act of 1999, P.L. 106-170. Under that option,
45 Certain items are excluded, such as an individual’s home; up to $2,000 of household
goods and personal effects; life insurance policies with a face value of $1,500 or less; an
automobile with value up to $4,500; and burial funds up to $1,500, among other things.
CRS-43
states may choose to apply more liberal income and resources standards for persons
with disabilities who are working. Medicaid coverage is used as an incentive to
retain these persons in the workforce. Under the law, these persons may “buy-into”
Medicaid through various forms of cost-sharing and premiums based on income.)46
The Options Program allows people with income up to 300% of the federal
poverty level (up to $2,245/month for an individual in 2003) to become eligible for
state-funded home and community-based services, with cost-sharing applied on a
sliding fee-scale basis. There is no resource test to qualify. On the other hand, the
Bridge Program allows people with resources up to $40,000 to access state-funded
home and community-based services. Cost sharing of 50% toward the cost of
services is applied for a period of up to 12 months until a person spends down
resources to the Medicaid eligibility level of $2,000. This allows people needing
long-term care to receive services, and gradually become eligible for Medicaid, rather
than having to wait to receive services until all countable resources are depleted to
the $2,000 level.
Length of time to process Medicaid financial and functional eligibility for home
and community-based services. Under federal law and regulation, the state Medicaid
agency must establish time standards for determining eligibility and inform
applicants what they are. States must make an eligibility determination for persons
who apply for benefits on the basis of disability within 90 days of the date of
application. State officials estimate that it can take from 3 to 4 months or more from
the point of identification of the need for home and community-based services to the
point of actually receiving Medicaid services. Home and community-based providers
must rely on county assistance offices to determine financial eligibility on behalf of
clients they wish to serve, and providers cannot take the risk of serving persons
without eligibility verification. In contrast, officials pointed out that when a referral
for nursing homes is made, nursing homes can often assume the risk that the person
will become eligible for Medicaid, and spend down within a predictable period of
time, usually 6 months to a year. In addition, nursing homes usually have the
administrative staff to assist applicants with the process of completing financial
eligibility forms for Medicaid expeditiously.
One of the ways to address the risk faced by home and community-based
providers would be to allow providers to make prospective clients provisionally
eligible for waiver services. However, the Medicaid statute does not provide for
presumptive eligibility for home and community-based services. In recognition of
these issues, the Center for Medicare and Medicaid Services (CMS) has been
cooperating with several states to establish a programmatic equivalent of presumptive
eligibility for Section 1915(c) waiver services. A few states have implemented a
system whereby providers may establish a preliminary plan of care for persons who
meet the functional eligibility criteria, provide some services under the plan of care
46 For further information, see CRS Report RL31157, Ticket to Work and Work Incentives
Improvement Act of 1999, by Jennifer Hess, et. al.,
CRS-44
using funds other than Medicaid, and then certify the person for Medicaid wavier
services once financial eligibility is established.47
Equity of Home and Community-Based Service Access Across
Populations in Need of Care. Issues of equity of access to Section 1915(c)
waiver services cross a number of dimensions. In Pennsylvania, the number of
approved slots for persons with mental retardation and developmental disabilities
exceed those for persons with other disabilities. Of the total number of approved
slots in the state for FY1998-FY1999 – 17,208, about 63% were for persons with
mental retardation, with the balance for other persons with disabilities.48 Moreover,
there are waiting lists for the waiver services for both persons with mental retardation
and the elderly. State officials and stakeholders have indicated that needs
assessments should be conducted to achieve more proportional and geographic equity
across populations.49
Another dimension of equity relates to comparability of service packages within
waivers and application of different cost caps for different waivers. Some waivers
are capped at 80% of the cost of nursing home care50 while others are capped at
100%. While states have the discretion to decide where to place the cap for each
service, this does lead to differences in service levels across populations. In addition,
some cost caps are applied to each individual, and some are applied on an aggregate
basis across the state which allows persons with high cost needs to be served. Of the
10 waivers discussed in this report, seven are applied on an aggregate basis and three
are applied on an individual basis. In this regard, advocates in Pennsylvania are
requesting that the state shift from individual cost caps to aggregate cost caps for all
waivers.51 The state is investigating this option.
State officials and stakeholders have recommended that the waiver programs
should be evaluated to determine if service packages should be made more uniform
throughout the state, to eliminate gaps in services for different eligibility groups.52
Waiting Lists for Home and Community-based Care for Persons
with Mental Retardation and Developmental Disabilities. Waiting lists for
services for persons with mental retardation and developmental disabilities have
drawn attention across many states, including Pennsylvania. Despite the sizable
amount of funding devoted to services for persons with mental retardation in
Pennsylvania, waiting lists for services have been a persistent problem. A 1997
survey by Temple University revealed that over 14,000 persons were on waiting lists
for services. Of those, 74% needed services in more than 1 year, 23% needed
47 Personal communication with CMS staff, Oct. 24, 2002.
48 Home and Community-based Services Barriers Elimination Work Group, p. 25 (see
footnote 46 of that document).
49 Home and Community-based Services Barriers Elimination Work Group, p. 25.
50 This applies to the PDA waiver and excludes case management and administration.
51 Home and Community-Based Services Barriers Elimination Work Group, p. 27.
52 Home and Community-Based Services Barriers Elimination Work Group, p.p. 25-27.
CRS-45
services within 1 year, and less than 3% needed services on an emergency basis. The
vast majority (78%) of persons on the waiting lists live in their own home or a
relative’s home. One of the chief factors involved in planning for persons on waiting
lists is the capacity of caregivers. Many of those in critical need of services had
either an aging or ill caregiver. Of all persons on the waiting list, 38% had a
caregiver aged 60 and over.
Former Governor Tom Ridge requested that a plan be developed to address the
waiting list issue. A Planning Advisory Group to the Office of Mental Retardation
recommended a series of steps to be taken by the state to reduce waiting lists and
expand community-based services. (A Long-Term plan to Address the Waiting List
for Mental Retardation Services in Pennsylvania, October 1999.)
Long-Term Care Staffing. Across the country, states are faced with the
challenge of finding sufficient numbers of qualified staff for long-term care. This is
a system-wide problem. The Pennsylvania Intra-Governmental Council on Long-
Term Care commissioned a study to examine the issues affecting the long-term care
workforce and to make recommendations to improve the current staffing shortages.
In Pennsylvania, nearly 70% of the state’s long-term care providers reported
significant problems with the recruitment or retention of frontline workers, and 35%
of providers reported that the worker shortage was extreme.
Finding direct care workers (defined as home health aides, nurse aides, personal
attendants and personal care aides) has become increasingly difficult in Pennsylvania.
A survey of the state’s 3,400 providers revealed that in the fall of 2000 an estimated
94,150 persons were employed in frontline positions; for this same time period an
additional 11,300 positions went unfilled. The report indicated that nursing homes
accounted for 46% of the positions and 53% of the openings; larger personal care
homes accounted for 23% of the positions and 16% of the openings. Home health
and home care agencies represented 20% of the positions and 23% of the openings.53
From interviews with front-line workers across the state, the study was able to
identify some of the industry’s major problems in the recruitment and retention of
qualified staff. Most often mentioned were inadequate compensation (the average
hourly wage of a frontline worker was $7.29 in 2001), a lack of benefits, and a lack
of respect for the contribution that frontline workers make to long-term care. In
addition, the focus groups identified transportation issues for home health workers,
high patient-to-staff ratios, and the demanding nature of the work (both physically
and emotionally) as challenges to attracting new workers and retaining current
workers.
The study made a variety of recommendations to the state and the long-term care
industry to help address the workforce shortage, including most importantly
improvements in pay scales and benefits. The study also made a number of
53 Pennsylvania Intra-Governmental Council on Long-Term Care, Pennsylvania’s Frontline
Workers in Long-Term Care, Report to the Pennsylvania Intra-Governmental Council on
Long-Term Care, Feb. 2001.
CRS-46
recommendations intended to professionalize the field and improve recruitment
strategies.
Nursing home and home care agencies compete for the same staff, and these
providers compete for any new funding that might be available for long-term care.
State officials indicate that when new funding is available for long-term care, nursing
home lobbyists make the case that they need the money to improve quality of care.
State officials urged that if the federal government is serious about promoting home
and community-based care, then more incentives should be given to states to support
this care.
Fragmentation of Responsibility for Long- Term Care. Many states
confront issues of fragmentation of responsibilities for administration of long-term
care programs. There is general recognition among state officials and stakeholders
across many states that coordination of long-term care services is difficult to achieve.
This is due to many factors, including:
! The long-term care system spans many services and benefits –
skilled nursing facilities, housing, a wide range of home care and
community-based services, cash payments, adaptive technology and
rehabilitation, among others. Generally, no single agency or
department in state governments is responsible for this wide array of
services and benefits.
! Eligibility for public long-term care is premised on both financial
and functional requirements, which in many cases are handled by
separate entities.
! Requirements for enforcement of quality of care and payment to
providers is the responsibility of separate entities in many cases.
In Pennsylvania, three distinct state departments are responsible for various
components of the long-term care system – the Department of Public Welfare, the
Department of Aging, and the Department of Health (see Figure 2). Responsibility
for management, reimbursement policy, coordination of services, administration of
facility-based and home and community-based care, and quality of care are spread
among these departments. In addition, fragmentation is present on the sub-state
level. County-based agencies that are operated by the state are responsible for
financial eligibility for nursing home and home and community-based services, while
area agencies on aging that are locally administered are responsible for functional
eligibility determinations for the elderly and disabled under contract with the state.
Administrative fragmentation and difficulties in coordination of services have been
documented in various reviews conducted by the state.54
The state has separated responsibility for payment of providers from
responsibility for oversight on quality of care, recognizing that there might be
conflicts of interest in having the payor agency also be an enforcer of quality
standards. In addition, responsibility for oversight of quality of care for various
54 Pennsylvania Intra-Governmental Council on Long-Term Care, Long-Term Care for the
21st Century: A Time for Change, Sept. 9, 1996, p. 22.
CRS-47
services within the long-term care system resides in different agencies. For example,
responsibility for licensure of personal care homes resides with the Department of
Public Welfare while oversight of quality of care in nursing homes resides with the
Department of Health.
While there is no right or wrong way to organize the various responsibilities,
issues of coordination continue to be problematic for Pennsylvania according to state
officials. The state has taken steps to resolve some of these issues. The Intra-
governmental Council of Long-Term Care was established to address issues around
policy coordination among the various departments and through the long-term care
system. In addition, some service coordination problems around managing services
for clients have been addressed by moving toward a single point of entry for
functional eligibility determination through area agencies on aging. These agencies
perform functional eligibility determination for both the elderly and younger persons
with disabilities for nursing facilities as well as for home and community-based care.
CRS-48
Appendix 1. Major Home and Community-Based Long-Term Care Programs for the Elderly and Persons with
Disabilities in Pennsylvania
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)a
oversight
oversight
PDA Waiver
Persons
Nursing
Area agencies
300% of the
DPW/OIM/
Assessment; case
9,309 persons
$35,000
PDA/DPW
OMA/DPW
(1915(c))
aged 60
facility (NF)
on aging
federal SSI
County
management;
served in State
individual cost
and over
level of care
under
level ($1,656
assistance
attendant care;
Fiscal Year
cap (equivalent
Statewide
contract with
in 2003)/
offices
companion;
(SFY)2001-2002
to 80% of the
DPW
$2,000 for an
counseling;
nursing facility
Initiated
individual
environmental
10,049 slots
rate; excludes
statewide in
modifications;
approved in SFY
cost of
1999
extended physical
2002-2003
administration
services; home-
and case
delivered meals; home
management).
health; home support;
Average cost
adult day care
in SFY2001-
services; personal
2002, $8,136
care; personal
per person
emergency response
system; respite care;
specialized medical
equipment and
supplies; and
transportation
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-49
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)a
oversight
oversight
Independence
Persons
Persons with
Area agencies
300% of
DPW/OIM/
Service coordination;
452 persons served
$42,116
DPW/OSP
DPW/OIM
Waiver
age 18 and
substantial
on aging
the
County
assistance with daily
as of 12/02
aggregate
(1915(c)
over with
functional
under
federal
assistance
living activities
cost cap in
physical
limitations in
contract with
SSI level
offices
($13.64 to $18.38 per
402 slots as of
SFY2001-2002
Statewide
disabilities
at least three of
DPW
($1,656 in
hour); respite care
12/02
the following
2003)/
($13.64 to $18.38 per
Initiated in
areas:
$2,000
hour); up to $10,000
Waiver amendment
1997
self-care;
for an
in environmental
to increase slots is
understanding
individual
accessibility
in process as of
and use of
adaptions; up to
December 2002.
language;
$10,000 in specialized
learning
medical equipment
self-direction;
per consumer per
capacity for
lifetime; PERS;
independent
physical, occupational
living; and
and speech therapies;
mobility
visiting nurse;
community
integration (up to
$50/hour); educational
services up to
$120/day;
transportation
generally up to
$215/month
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-50
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)a
oversight
oversight
Michael
Technology
Must be
Physician
300% of the
DPW/OIM/
Private duty nursing;
57 served/136
$236,000
DPW/OIM
DPW/OIM
Dallas
dependent
dependent on
certification
federal SSI
County
case management;
slots in SFY2001-
aggregate cost
Waiver
persons of
a technologic
level
assistance
attendant care; respite
2002
cap
(1915(c))
all ages
device to
($1,656 in
offices
care; durable medical
replace a vital
2003)/
equipment; and
Annual cost
Statewide
body function
$2,000 for
nutritional
ranges from
or sustain
an
supplements
$180,000 to
Initiated in
life; must
individual
$200,000 per
1987 for
have
person. Cost cap
children;
exhausted
is based on state
expanded to
private
rate for Special
all ages in
insurance
Rehabilitation
2001
coverage
Facilities (SRFs).
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-51
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)a
oversight
oversight
Elwyn
Persons
Must be NF
Area
300% of the
Dept of
Personal care;
39 persons/45
$23,000
DPW/OIM
DPW/OIM
Waiver
aged 40
eligible and
agencies on
federal SSI
Public
counseling; home
slots in SFY2001-
individual
(1915(c))
and over
reside in
aging under
level ($1,656
Welfare/
health; therapeutic
2002
cost cap
who are
Valley View
contract
in 2003)/
Office of
social and recreation
Delaware
deaf, blind,
Assisted
with Dept of
$2,000 for an
Income
services; special
County only
or
Living
Public
individual
Maintenance/
medical equipment
deaf/blind
facility
Welfare
County
and supplies; and
who live in
assistance
transportation
Delaware
offices
County
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-52
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)
oversight
oversight
AIDS waiver
Persons aged
May not be
Physician
300% of
DPW/OIM/
Skilled nursing; home
78 persons served/
$14,000
DPW/OIM
DPW/OIM
(1915(c))
21-64
enrolled in
the
County
health aide;
250 slots in
individual cost
with
HMOs or HI
federal
assistance
homemaker; supplies
SFY2001-2002
cap. Cost of care
Statewide
symptomatic
Organizations
SSI level
offices
and nutritional
may not exceed
HIV and
or hospice
($1,656 in
supplements not
comparable
Initiated in
AIDS
care
2003)/
covered by Medicaid;
group in hospital
1990
$2,000
nutritional
or nursing
for an
consultations by
facility.
individual
registered dietitians
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-53
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
Limits
by
Services
approved
individual)a
oversight
oversight
Commcare
Persons
Persons with TBI
Area
300% of
DPW/OIM/
Service coordination;
Three persons
$146,740
DPW/OIM
DPW/OIM
Waiver
aged 21 and
who require
agencies on
the
County
personal care; respite
served as of 12/02
aggregate cost
(1915(c))
older with
Special
aging under
federal
assistance
care prevocational;
cap
traumatic
Rehabilitative
contract
SSI level
offices
supported
98 slots SFY2002-
Statewide
brain injury
Facility (SRF)
with Dept of
($1,656 in
employment;
2003
(TBI)
level of care.
Public
2003)/
habilitation;
Initiated in
Disability must
Welfare.
$2,000
education (including
2002
result in
Other
for an
community college,
substantial
contractors
individual
university, tutoring);
functional
determine
environmental
limitation in
need for
adaptions ($20,00
three or more of
SRF care.
lifetime limit);
major life
non-medical
activities:
transportation; spec.
mobility,
medical equipment
behavior,
($10,000 lifetime
communication,
limit); chore; PERS;
self-care self-
physical, occupation,
direction,
speech therapies;
capacity for
part-time nursing;
independent
coaching; night
living and
supervision; day
cognitive
programs
capacity
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-54
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)a
oversight
oversight
Attendant
Persons
Must be
Area
300% of the
DPW/OIM/
Basic care services
1,804
$38,059
DPW/OSP
DPW/OIM
Care Waiver
aged 18-59
capable of
agencies on
federal SSI
County
such as assisting the
served/2,396 slots
aggregate cost
(1915(c))
who meet
selecting and
aging under
level ($1,656
assistance
consumer in and out
in SFY2002-2003
cap
NF level of
supervising
contract
in 2003)/
offices
of bed, wheelchair,
Statewide
care
attendants
with DPW
$2,000 for an
and/or motor vehicle;
and
individual
and assistance with
Initiated as a
managing
routine bodily
waiver in
their financial
functions such as
1994
and legal
bathing, grooming,
affairs
and eating.
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-55
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)a
oversight
oversight
Consolidated
Persons
Persons who have
County
300% of
DPW/OIM/
Respite care;
13,614 persons
$52,143
DPW/
DPW/OIM
Waiver for
with
significant
Mental
the federal
County
habilitation
served in
aggregate cost
OMR
Persons with
mental
sub-average
Health/
SSI level
assistance
(including
SFY2001-2002
cap for
Mental
retardation
intellectual
Mental
($1,656 in
offices
residential; day;
SFY2002-2003
Retardation
age 3 and
functioning; who
Retardation
2003)/
preocational;
16,491 slots for
(1915(c))
over
have significant
offices
$2,000 for
supported
SFY2002-2003
limitations in
an
employment;
Statewide
maturation,
individual
education);
learning, personal
environmental
Initiated in
independence;
accessibility
1996
who have
adaptions;
substantial
transportation; chore;
functional
private duty nursing;
limitations in three
specialized therapies;
or more areas of
and permanency
major life
planning for children
activities,
and youth
including self-
care, mobility, and
receptive and
expressive
activities; and who
experienced onset
of these conditions
before the age of
22. Also can
include persons
with autism who
meet the
prescribed criteria.
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-56
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)a
oversight
oversight
Person/
Persons
Persons with
County
300% of the
DPW/OIM/
Homemaker/chore;
6,218 persons
$21,225
DPW/
DPW/
Family
with
significant sub-
Mental
federal SSI
County
respite care;
served in SFY
individual
OMR
OMA
Directed
mental
average
Health/
level
assistance
habilitation
2001-2002
cost cap for
Waiver
retardation
intellectual
Mental
($1,635 in
offices
(residential, day,
SFY2002-2003
(1915(c))
age 3 and
functioning;
Retardation
2002)/
prevocational;
7,361 slots for
over
who have
offices
$2,000 for
supported
SFY2002-2003
Statewide
significant
an
employment);
limitations in
individual
environmental
Initiated in
maturation,
accessibility
1999
learning,
adaptions;
personal
transportation;
independence;
physical, occupational
who have
therapy; speech,
substantial
hearing, and language
functional
services;
limitations in
visual/mobility,
three of more
behavior therapy;
areas of major
visiting nurse;
life activities,
adaptive appliances
including self-
and equipment; and
care, mobility,
personal support
and receptive
and expressive
activities; and
who has
experienced
onset of these
conditions
before the age
of 22. Also can
include persons
with autism
who meet the
prescribed
criteria.
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
CRS-57
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)a
oversight
oversight
OBRA
Persons
Disabilities
Agencies
300% of
DPW/OIM/
Service coordination;
377 persons served
$129,949
DPW/OSP
DPW/OIM
Waiver
who have
attributable to
under
the federal
County
assistance with ADLs;
as of 12/01
aggregate cost
severe
cerebral palsy,
contract
SSI level
assistance
respite care;
cap
1915(c)
chronic
epilepsy or other
with
($1,656 in
offices
environmental
356 slots as of
disabilities
conditions found
DPW/OSP
2003)/
adaptations assistive
12/02
Statewide
to be closely
$2,000 for
technology/special-
related to MR,
an
ized medical
Waiver amendment
Initiated in
but excluding
individual
equipment; PERS;
to increase slots is
1991
MR or major
physical,
in process.
mental disorders.
occupational, speech,
Condition was
hearing and language
manifested prior
and behavioral
to age 22 and is
therapies; adult day
likely to continue
care; prevocational
indefinitely and
education; supported
results in
employment;
substantial
community
functional
integration;
limitations in at
transportation
least three major
life activities
(self-care;
understanding/
use of language;
learning;
mobility; self-
direction and
capacity for
independent
living.)
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-58
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)a
oversight
oversight
Long Term
Persons aged
NF level of
Multidiscipl-
300% of
DPW/OIM/
Comprehensive
2002:
Medicare
CMS and
CMS and
Care Capitated
60 and older
care
inary staff at
the
County
medical and long-term
LIFE-Pittsburgh-
capitated rate
PA DPW
PA DPW
Assistance
four sites
federal
assistance
care services provided
87 enrolled/250
based on monthly
program
SSI level
offices
chiefly in adult day
slots approved
capitated
($1,656 in
care setting. Includes
amounts adjusted
Program of all
2003)/
primary medical and
LIFE-
for a frailty factor
Inclusive Care
$2,000
nursing, physical,
Philadelphia- 97
(2002
for the Elderly
for an
speech, occupational
enrolled/250 slots
$1,876.56).
(PACE)
individual
therapies; in-home
approved
Medicaid rates
support; hospice;
negotiated with
Four sites
personal care;
LIFE-Univ. of PA.
Dept of Public
covering
outpatient MH/MR
School of Nursing,
Welfare.
portions of
services; drugs; meals
Philadelphia– 143
Philadelphia
at day health center
enrolled/250 slots
and Allegheny
and home.
approved
counties. One
PACE
Community LIFE-
program
McKeesport –
(receiving
107 enrolled/250
Medicare and
slots approved
Medicaid
capitation
payments ) and
three pre-
PACE
programs
(receiving
Medicaid
capitation
only)
One site with
permanent
provider status
Jan. 2002.
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-59
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Administr
Target
Determined
Resource
Determined
enrolled/slots
(aggregate/
ative
Financial
Program
group
Criteria
by
Limits
by
Services
approved
individual)a
oversight
oversight
Bridge
Same as
Same as PDA
Same as PDA
Income: same as
Same as
Same as PDA
200 as of April
Same as PDA
Same as
Same as
program
PDA waiver
waiver
waiver
PDA waiver.
PDA waiver
waiver
2002
waiver
PDA
PDA
(state
Resources: up
waiver
waiver
financed)
to $40,000.
Cost-sharing fee
Initiated in
of 50% applied
2002
to services for a
period up to 12
Statewide
months until
person spends
down assets to
$2,000. No
cost-sharing for
assessment,
counseling, case
management,
and protective
services.
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-60
Functional
Financial
eligibility
eligibility
No. of persons
Annual cost
Target
Determined
Income/
Determined
enrolled/slots
cap (aggregate/
Admin.
Financial
Program
group
Criteria
by
resource limits
by
Services
approved
individual)a
oversight
oversight
Options
Same as
Same as PDA
Same as PDA
Cost sharing based
Same as PDA
Same as PDA
91,000 persons
$625 per month
Same as
Same as
program
PDA
waiver
waiver
on income.
waiver
waiver. Also
served in
individual cost
PDA
PDA
(state
waiver.
Income up to
includes needs
SFY2001-
cap
waiver
waiver
financed)
Also
125% of FPL, no
assessment and
2002
includes
cost sharing.
case management
certain
Income up to
for persons aged
Statewide
services for
300% of FPL,
18-59 applying
persons
cost-sharing on a
for nursing
Initiated in
aged 18-59.
sliding fee scale
facility care;
the 1970s;
basis. Cost-sharing
mandatory
cost sharing
does not apply to
assessment for
initiated in
assessment, case
persons applying
2002.
management,
for Medicaid
home-delivered
nursing facility
meals and Family
care, and for SSI-
Caregiver Support
eligible persons,
program.
assessment for
placement in a
Resource test:
domiciliary or
none, though
personal care
persons who spend
home
down may retain
income up to
125% of FPL and
$10,000 in assets.
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-61
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)a
oversight
oversight
Family
Frail and
Care receiver
Area
Cost-sharing based
PDA
Assessment;
10,000 persons
Not applicable
PDA
PDA
Caregiver
disabled
60 years and
agencies on
on sliding scale;
counseling;
receive services
Support
persons
older must
aging
reimbursement for
respite education;
per year
program (state
aged 60 and
have an
expenses based on
one-time grants
and Older
older
informal
care receiver total
up to $2000 for
American Act
primary
household income.
home
funds)
caregiver who
No cost-sharing
modification,
is providing
for assessment,
assistive devises.
Statewide
majority of
case management,
Persons who
care.
benefits
meet income
Initiated in
counseling, and
requirements
1987; became
education and
may be eligible
statewide in
training of
for subsidies
1991
caregivers.
from $200-
Persons with
$500/month in
income below
services or
200% of FPL, no
supplies.
cost-sharing.
Persons between
200%-380% of
poverty, receive
services on a
sliding fee scale
basis. Persons with
income above
380% of FPL,
receive no cash
reimbursement.
Source: Prepared by CRS based on Pennsylvania’s Guide to Medicaid-Funded Home and Community-Based Services, and data provided by Pennsylvania Department on Aging and
the Pennsylvania Department of Public Welfare.
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-62
Appendix 2. Population in Large State Facilities
Table A-1. Population in Large State Facilities for Persons with
Mental Retardation/Developmental Disabilities, Closure Date,
and Per Diem Expenditures
Residents
Average per
Large state MR/DD
Year
with
diem
facilities or
facility
Year
MR/DD
expenditures
units
opened
closed
on 6/30/01
FY01 ($)
Altoona center
1982
--
112
287.67
(Altoona)
Cresson center
1964
1982
--
--
(Cresson)
Embreeville center
--
--
(Coatesville)
1972
1997
Ebensburg center
1957
--
320
395.00
(Ebensburg)
Hamburg center
1960
--
203
398.00
(Hamburg)
Laurelton center
1920
1998
--
--
(Laurelton)
Marcy center
1975
1982
--
--
(Pittsburgh)
Pennhurst center (Pennhurst)
1908
1988
--
--
Polk center (Polk)
1897
453
400.00
Allentown mental
--
--
retardation unit
(Allentown)
1974
1988
Retardation Unit
--
--
(Clarks Summit)
1974
1992
Harrisburg mental
--
--
retardation unit
(Harrisburg)
1972
1982
Hollidaysburg mental
--
--
retardation center
(Hollidaysburg)
1974
1976
Mayview mental
--
--
retardation unit
(Mayview)
1974
2001
Philadelphia mental
--
--
retardation unit
(Philadelphia)
1983
1989
CRS-63
Residents
Average per
Large state MR/DD
Year
with
diem
facilities or
facility
Year
MR/DD
expenditures
units
opened
closed
on 6/30/01
FY01 ($)
Somerset mental retardation
--
--
unit (Somerset)
1974
1996
Selinsgrove center
--
(Selinsgrove)
1929
477
363.00
Torrance mental retardation
--
--
unit (Torrance)
1974
1998
Warren mental retardation
--
--
unit (Warren)
1975
1976
Wernersville mental
--
--
retardation unit
(Wernersville)
1974
1987
Western center
1962
2000
--
--
(Cannonsburg)
White Haven center
--
(White Haven)
1956
245
380.00
Woodhaven center
--
--
(Philadelphia)55
1974
1985
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).
55 Woodhaven (PA), although state-owned, became nonstate in 1985.
CRS-64
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
m e t h o d o l o g y , s e e s a m e : a v a i l a b l e a t
[http://www.census.gov/population/www/projections/ppl47.html].
CRS-65
Additional Reading
Pennsylvania Department of Aging. A Guide Book for Older Pennsylvanians:
Benefits and Rights for Older Pennsylvanians. Dec. 2001.
Pennsylvania Department of Aging. Comprehensive Options Assessment Form.
Pennsylvania Department of Aging. Office of State Long-Term Care Ombudsman.
How to Select Long-Term Care in Pennsylvania. Oct. 11, 1996.
Pennsylvania Department of Aging. State Plan on Aging, 2000-2004.
Pennsylvania Department of Public Welfare. Pennsylvania’s Guide to Medicaid-
Funded Home and Community-Based Services. Bulletin, July 2001.
Pennsylvania Department of Public Welfare. Department of Aging. Direct Service
Worker Initiative: Plan Guidelines for Local Initiatives. Aug. 2001.
Pennsylvania Department of Public Welfare. Office of Mental Retardation.
Program Overview.
Pennsylvania Department of Public Welfare. Office of Mental Retardation. A Guide
to Supporting People Moving from State Centers into the Community. Feb.
1998.
Pennsylvania Department of Public Welfare. Office of Mental Retardation. How
Can I Have the Life That I Want? A Guide to Choosing Supports and Services.
2000.
Pennsylvania Intra-Governmental Council on Long-Term Care. Options in Long-
Term Care. Interim Report of the Pennsylvania Intra-Governmental Council
on Long-Term Care. Feb. 1990.
Pennsylvania Intra-Governmental Council on Long-Term Care. Medicaid Estate
Recovery Work Group, Part I. Report to the Pennsylvania Intra-Governmental
Council on Long-Term Care. Mar. 1999.
Pennsylvania Intra-Governmental Council on Long-Term Care. Medicaid Estate
Recovery Work Group, Part II. Report to the Pennsylvania Intra-Governmental
Council on Long-Term Care. Mar. 1999.
Pennsylvania Intra-Governmental Council on Long-Term Care. Long-Term Care
and Services Discussion Guide, 1997.
Pennsylvania Intra-Governmental Council on Long-Term Care. Workers in Long-
Term Care. In Their Own Words. Report to the Pennsylvania Intra-
Governmental Council on Long-Term Care. Feb. 2001.
CRS-66
Pennsylvania Intra-Governmental Council on Long-Term Care. Pennsylvania’
Frontline Workers in Long-Term Care: The Provider Organization Perspective.
Report to the Pennsylvania Intra-Governmental Council on Long-Term Care.
Feb. 2001.
Pennsylvania Department of Health. Department of Aging. Intra-Governmental
Council on Long-Term Care. Long-Term Care and Services Information Focus
Group Findings: What Do You Need and How Do You Want It? June 2000.
Pennsylvania Department of Public Welfare. Office of Mental Retardation. How
Can I Have the Life That I Want? A Guide to Choosing Supports and Services,
2000.
Pennsylvania Department of Public Welfare. Office of Mental Retardation.
Everyday Lives: Making it Happen. Nov. 2001.
Pennsylvania Home and Community-Based Services External Stakeholder Plan
Team. Home and Community-Based Services Project: A Discussion Summary.
Apr. 2001.
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:
Pennsylvania
Updated April 2, 2003
Carol O’Shaughnessy
Specialist in Social Legislation
Domestic Social Policy Division
Rob Weissert, Julie Stone, and Sidath Panangala
Domestic Social Policy Division
Meridith Walters
Consultant
Domestic Social Policy Division
Congressional Research Service ˜ The Library of Congress
Home and Community-Based Services – States Seek
to Change the Face of Long-Term Care: Pennsylvania
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 have drawn the attention of federal and state policymakers. 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
payer 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, the first in the
series of ten state reports, presents background and analysis about long-term care in
Pennsylvania.
Long-term care issues have high prominence among state officials in
Pennsylvania as a result of its large elderly population and concern about the impact
of long-term care costs on the state’s budget. Its population aged 65 and older is
15.6% of its total population, ranking second only to Florida. By 2025, 21% of its
population will be 65 and older. Pennsylvania federal and state Medicaid spending
for long-term care in FY2001 was $5.1 billion – almost half of all Medicaid
spending. Spending for nursing homes was more than one-third of Medicaid
spending. While spending for home and community-based services has increased
dramatically in recent years, these services represented less than one of every five
dollars spent on long-term care in FY2001.
Over the last 2 decades, Pennsylvania has documented issues it has confronted
in providing long-term care services. Among these issues are: an imbalance in
financing favoring institutional care, rather than home and community-based care
(which most people prefer); fragmentation in the management and delivery of
services; difficult access to services, especially for low and moderate income persons
who do not qualify for Medicaid; and disparities in service availability across the
state and populations in need of care. According to state officials, Pennsylvania’s
guiding principles in long-term care are to: control surplus growth of nursing home
beds; support consumer choice; encourage expansion of home and community-based
services; fund services rather than capital construction; and assure quality of care.
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
Introduction: Federal Legislative Perspective . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
A CRS Review of Ten States: Report on Pennsylvania . . . . . . . . . . . . . . . . . . . . . 5
Summary Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Demographic Trends . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Administration of Long-Term Care Programs . . . . . . . . . . . . . . . . . . . . . . . . 6
Trends in Institutional Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
Trends in Home and Community-Based Care . . . . . . . . . . . . . . . . . . . . . . . . 7
Long-Term Care Spending . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8
Issues in Financing and Delivery of Long-Term Care . . . . . . . . . . . . . . . . . . 8
Demographic Trends . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
Need for Long-Term Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
Administration of Long-Term Care Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . 12
State and Local Administration . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12
Responsibility for Financial and Functional Eligibility
Determinations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15
Pennsylvania’s Long-Term Care Services for the Elderly and Persons
with Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16
Trends in Institutional Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16
Trends in Home and Community-Based Care . . . . . . . . . . . . . . . . . . . . . . . 18
Medicaid 1915(c) Waivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19
State Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21
Pennsylvania’s Long-Term Care Services for Persons with Mental
Retardation and Developmental Disabilities . . . . . . . . . . . . . . . . . . . . . . . . 24
Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24
Trends in Institutional Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25
Trends in Home and Community-Based Care . . . . . . . . . . . . . . . . . . . . . . . 28
Medicaid 1915(c) Waivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28
Financing Long-Term Care in Pennsylvania . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29
Medicaid Spending in Pennsylvania . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30
Medicaid Long-Term Care Spending in Pennsylvania . . . . . . . . . . . . . . . . 32
State Spending on Home and Community-Based Services
for the Elderly . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37
Medicaid and State Spending on Services for Persons with Mental
Retardation and Developmental Disabilities . . . . . . . . . . . . . . . . . . . . 39
Selected Issues in Financing and Delivery of Long-Term Care Services
in Pennsylvania . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40
Institutional Bias . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40
Categorical Approach to Home and Community-Based Services . . . . 41
Medicaid Eligibility Requirements and Access to Services . . . . . . . . 42
Equity of Home and Community-Based Service Access
Across Populations in Need of Care . . . . . . . . . . . . . . . . . . . . . . 44
Waiting Lists for Home and Community-based Care for Persons
with Mental Retardation and Developmental Disabilities . . . . . . 44
Long-Term Care Staffing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45
Fragmentation of Responsibility for Long- Term Care . . . . . . . . . . . . 46
Appendix 1. Major Home and Community-Based Long-Term Care Programs
for the Elderly and Persons with Disabilities in Pennsylvania . . . . . . . . . . 48
Appendix 2. Population in Large State Facilities . . . . . . . . . . . . . . . . . . . . . . . . 63
Appendix 3. About the Census Population Projections . . . . . . . . . . . . . . . . . . . . 65
Additional Reading . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 66
List of Figures
Figure 1. Percentage Population Increase in Pennsylvania,
2000-2025 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
Figure 2. Pennsylvania Long-Term Care System . . . . . . . . . . . . . . . . . . . . . . . . 14
Figure 3. Institutional and Home and Community-Based Services
as a Percent of Medicaid Long-Term Care Spending
in Pennsylvania, 1990-2001 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34
Figure 4. Medicaid Long-Term Care Spending by Category
in Pennsylvania, FY1990-FY2001 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35
Figure 5a. Medicaid Long-Term Care Spending in Pennsylvania
by Category, FY1990 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36
Figure 5b. Medicaid Long-Term Care Spending in Pennsylvania
by Category, FY2001 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36
Figure 6. Medicaid Home and Community-Based Services Waiver
Spending by Target Population in Pennsylvania, FY2001 . . . . . . . . . . . . . 37
List of Tables
Table 1. Pennsylvania Population Age 65 and Older, 1990 and 2000 . . . . . . . . . . 9
Table 2. Elderly Population as a Percent of Total Population,
Pennsylvania and the United States, 2025 . . . . . . . . . . . . . . . . . . . . . . . . . . 10
Table 3. Estimated Number of Persons with Two or More Limitations
in Activities of Daily Living (ADLs), by Poverty Status,
in Pennsylvania . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
Table 4. Nursing Home Characteristics in Pennsylvania
and the United States
. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16
Table 5. Persons with Mental Retardation and Developmental
Disabilities Served in Residential Settings, by Size of Setting,
1990, 1995, and 2000 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27
Table 6. Share of State Spending by Category, Pennsylvania
and the United States,1990-2001 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31
Table 7. State Spending for Medicaid as a Percent of Total State
Spending, Pennsylvania and the United States, 1990-2001 . . . . . . . . . . . . . 31
Table 8. Medicaid Long-Term Care Spending In Pennsylvania,
FY1990-FY2001 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33
Table 9. Medicaid Spending in Pennsylvania, Total Spending and
Long-Term Care Spending, by Category, and Percent Change,
FY1990-FY2001 in Constant 2001 Dollars . . . . . . . . . . . . . . . . . . . . . . . . 34
Table 10. Pennsylvania Department of Aging (PDA) Budget,
FY2001-FY2002, by Source of Funds . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38
Table 11. Federal and State Spending for Institutional and Community
Services for Persons with Mental Retardation/Development
Disabilities in Pennsylvania, 1990 and 2000 . . . . . . . . . . . . . . . . . . . . . . . . 39
Table A-1. Population in Large State Facilities for Persons with Mental
Retardation/Developmental Disabilities, Closure Date, and
Per Diem Expenditures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63
Acknowledgments
CRS wishes to acknowledge the significant time and contributions of the many
state officials and stakeholders who provided information on long-term care services
in the Commonwealth of Pennsylvania. Without their invaluable experience and
insight, this report would not be possible. We would particularly like to
acknowledge officials from the Pennsylvania Intra-Governmental Council on Long-
Term Care; the Department of Aging; the Department of Public Welfare; and the
Department of Health. We also would like to thank the numerous advocates and
providers who provided valuable perspectives on the long-term care services delivery
system in Pennsylvania.
The authors also gratefully acknowledge the excellent assistance of Charlotte
B. Foote 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 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 ten 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
Pennsylvania. Reports on the other nine states and an overview report will be
available during 2003.
Home and Community-Based Services –
States Seek to Change the Face of Long-
Term Care: Pennsylvania
Introduction: Federal Legislative Perspective
States choosing to
The Social Security Amendments of 1965, which
modify their programs for
created the Medicaid program, required states to
l o n g - t e r m c a r e f a c e
provide skilled nursing facility services under their
s i gn i fi can t challenges.
state Medicaid plans, and gave nursing home care the
Financing of nursing home
same level of priority as hospital and physician
services.
care has dominated long-term
care spending for decades.
“Section 1902 (a) A State plan for medical assistance
The federal financing
must provide for inclusion of some institutional and
structure that created
some noninstitutional care and services, and, effective
i n cen t i ves to support
July 1, 1967, provide (A) for inclusion of at least ... (1)
inpatient hospital services ...; (2) outpatient hospital
institutional care reaches
services; (3) other laboratory and X-ray services; (4)
back to 1965. A number of
skilled nursing home services (other than services in
converging factors have
an institution for tuberculosis or mental diseases) for
supported reliance on nursing
individuals 21 years of age or older; (5) physicians’
home spending. Prior to
services . . . .;” P.L. 89-97, July 30, 1965.
enactment of Medicaid,
homes for the aged and other
public institutions were
financed by a combination of direct payments made by individuals with their Social
Security Old Age Assistance (OAA) benefits, and vendor payments made by states
with federal matching payments on behalf of individuals. The 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
eliminated the distinction between skilled nursing facilities and intermediate care
1 CRS Report 83-181, Nursing Home Legislation: Issues and Policies, by Maureen Baltay.
CRS-2
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
Since its inception, Medicaid has been the predominant
there are about 17,000 nursing
payor for nursing home care. In 1970, over $1 billion was
homes with 1.8 million
spent on nursing home care through Medicaid and
beds.3)
Medicare. Federal and state Medicaid payments
accounted for almost all of this spending – 87%. Medicaid
spending for nursing home care grew by 50% in the three-
During the latter part of
year period beginning in 1967.
the 1960s and the 1970s,
nursing home care attracted a
In FY2001, Medicaid spent $53.1 billion on institutional
care (for nursing homes and care in intermediate care
great deal of congressional
facilities for the mentally retarded).
oversight as a result of
concern about increasing
federal expenditures, and a
pattern of instances of fraud
and abuse that was becoming evident. Between 1969 and 1976, the Subcommittee
on Long-Term Care of the Senate Special 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 referred to 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 two 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 two
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
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.
CRS-4
through waiver of federal law, within state-defined eligibility requirements, service
availability, and limits on numbers of persons served.
CRS-5
A CRS Review of Ten States: Report on
Pennsylvania
Pennsylvania’s policy stance on long-term care is oriented toward improving
options for home and community-based care for all populations in need of care and
stemming the growth of surplus institutional care support. Its guiding principles are
to: control surplus growth of nursing home beds; support consumer choice;
encourage expansion of home and community-based services; fund services rather
than capital construction; and assure quality of care.6
Over the last two decades, Pennsylvania has documented the issues it has
confronted in attempting to provide services to persons with disabilities.
Pennsylvania officials have produced a variety of documents on long-term care,
primarily through its Intra-Governmental Council on Long-Term Care. State reviews
have produced the following findings and recommendations:7
! the need for long-term care services is growing and is driven by an
increasing older population and the desire by virtually all persons
with disabilities to live in home and community-based settings,
rather than institutions;
! institutional care financing should be constrained and more effort
should be placed on supporting home and community-based care;
! fragmentation and duplication exists in the planning, management
and delivery of services among state agencies;
! access to long-term care services is difficult for many, especially low
and moderate income persons who do not qualify for Medicaid.
Persons in need of care must generally become impoverished before
they qualify for Medicaid assistance;
! cost-sharing mechanisms should be encouraged and strengthened to
spread the burden of payment of long-term care services by public
and private sources; and
! a system-wide shortage of frontline long-term care workers
represents a serious and growing problem and threatens access to
6 Pennsylvania Department of Public Welfare, Office of Medical Assistance Programs,
Commonwealth of Pennsylvania, Long Term Care In Pennsylvania. Briefing Book prepared
by the Department of Public Welfare. Apr. 22, 2002. (Hereafter cited as Long-Term Care
in Pennsylvania, Briefing Book.)
7 Pennsylvania Intra-Governmental Council on Long-Term Care, Long-Term Care for the
21st Century: A Time for Change, Sept. 9, 1996, p. 20. Reviews by various agencies in
state government include State Long-Term Care Plan, 1982; Human Services CHOICES
Report, 1986; Report of the Pennsylvania House Select Committee on Long-Term Care,
1988; OPTIONS in Long-Term Care: An Interim Report of the Pennsylvania Intra-
Governmental Council on Long-Term Care; and Intra-Governmental Council Report, 1996;
Pennsylvania’s Frontline Workers in Long-Term Care, prepared by the Polisher Research
Institute at the Philadelphia Geriatric Center for the Pennsylvania Intra-Governmental
Council on Long Term Care, Feb. 2001; Home and Community-Based Services Barriers
Elimination Work Group Report, Mar. 2002; Pennsylvania Intra-Governmental Council on
Long-Term Care Transition Report (to the Governor), Nov. 2002.
CRS-6
services by persons with disabilities and quality of care across
settings.
Summary Overview8
Overview
! Pennsylvania’s guiding principles in long-term care are to: control
surplus growth of nursing home beds; support consumer choice;
encourage expansion of home and community-based services; fund
services, rather than capital construction; and assure quality of care.9
! Long-term care has high prominence among state officials. This is
exemplified by significant state funding of services as well as by the
creation of the Pennsylvania Intra-Governmental Council on Long-
Term Care, first by Executive Order of the Governor, and then later
by the General Assembly. The Council has produced a number of
high-profile reports.
Demographic Trends
! An aging population poses challenges for the state. Pennsylvania’s
population age 65 and older – 1.9 million persons in 2000 –
represents 15.6% of its total population, ranking it second highest in
the nation, following only Florida.
! Its population age 85 and older – the group in greatest need of long-
term care services – grew by 38.3% from 1990-2000, ranking
seventh highest in the nation. Persons aged 85 and over with two or
more limitations in activities in daily living (ADLs) are estimated to
grow by 22% by 2010.
Administration of Long-Term Care Programs
! The Department of Public Welfare (DPW) is one of the largest state
human service agencies in the nation with over 23,000 employees.
DPW administers the Medicaid program and 10 of Pennsylvania’s
11 Medicaid Section 1915(c) home and community-based services
waivers for persons with disabilities. The Department of Aging
administers the home and community-based services waiver
program for the elderly.
! There is general recognition among state officials and stakeholders
that issues of coordination of management and delivery of services
among the various state and local levels is difficult to achieve. The
8 Information based on Pennsylvania 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.
9 Long-Term Care in Pennsylvania, Briefing Book.
CRS-7
Intra-governmental Council on Long-Term Care, housed in the
Department of Aging, was established to address issues around
policy coordination among the various departments.
Trends in Institutional Care
! The number of nursing homes in Pennsylvania has remained fairly
stable over the last 20 years. The number of beds per 1,000 elderly
persons is somewhat lower than the national average. The
occupancy rate is 89.7%, higher than the national average of 80.8%.
Pennsylvania policy entails a number of strategies that are designed
to control growth in surplus nursing home capacity financed by
Medicaid.
! The type of care provided to persons with mental retardation and
developmental disabilities has changed dramatically over the last
several decades, moving from care in large institutions to care in
small group homes and home settings. Partly in response to
litigation, Pennsylvania has closed 17 large state-supported
institutions for persons with mental retardation and significantly
downsized others since 1976.
Trends in Home and Community-Based Care
! There has been slow but steady expansion of Medicaid Section
1915(c) home and community-based services funding, but
institutional care still is predominant. In FY2001, less than 1 of
every 5 Medicaid dollars spent on long-term care was for home and
community-based care. Pennsylvania administers 1110 waiver
programs for persons with disabilities, each covering discrete
populations.
! Pennsylvania has developed two unique state-funded home and
community-based service programs that are financed by the state
lottery and from the state’s tobacco settlement funds. These
programs provide services to persons who do not meet state
Medicaid financial eligibility requirements, but who cannot afford
the full cost of home and community-based care. Cost sharing is an
important component of both programs.
! Area agencies on aging play a key role in performing case
management for adults with disabilities. They conduct assessment
of need for services using a standardized assessment tool.
! Pennsylvania devotes significant state resources toward providing
services to persons with mental retardation. Of the almost $1.6
billion spent from both federal and state sources in 2000, about 52%
came from state funding. About 72% of the total was for community
services.
10 One of the 11 Medicaid Section 1915(c) home and community-based waiver programs
covers infants, toddlers and families; this waiver is outside the scope of this report.
CRS-8
Long-Term Care Spending
! Long-term care comprises a significant portion of M e d i c a i d
spending in Pennsylvania – 47% of all Medicaid spending was
devoted to long-term care in FY2001 ($5.1 billion out of $10.9
billion). Nursing home spending represented more than one-third of
all Medicaid spending.
! As a share of Medicaid long-term care spending, nursing home
spending increased from 63% to 72% from FY1990-FY2001. At the
same time, Medicaid spending for institutions for persons with
mental retardation decreased from 29% to 9.5%.
! In FY2001, Pennsylvania spent almost $880 million on Medicaid
Section 1915(c) home and community-based services waiver
programs, a 627.3% increase from FY1990. About three-quarters of
waiver services spending is for persons with mental retardation and
developmental disabilities.
Issues in Financing and Delivery of Long-Term Care
! A recurring theme discussed by state officials is the view that the
federal financing system under Medicaid guarantees heavy use of
institutional care. This is largely due to the fact that nursing facility
care is an entitlement under Medicaid for persons needing such care
who meet its eligibility criteria. In the view of state officials, the
impetus for heavy reliance on institutional care is built into the
incentive structure for providers, resulting in funding disparities
between institutional and home and community-based care.
! Pennsylvania officials indicated that they want to move to a system
that relies more on home and community-based services, and that
consumers should be given clear choices regarding their options,
with adequate supports to stay at home and in the community.
! State officials indicated that the Medicaid Section 1915(c) home and
community-based services waiver programs have significantly
expanded opportunities for many people with disabilities to receive
services they would not have absent the waiver. However, the
waivers have created another set of categorical requirements. Each
program is identified as a discrete, distinct program resulting, state
officials say, in a silo approach to service provision. The procedures
locating the appropriate waiver or other service program and the
administering agency, and trying to fit a person’s needs into the
prescribed waiver requirements, can be burdensome on clients as
well as providers.
! State officials and stakeholders indicated that a systemwide problem
facing the long-term care system is a significant shortage of frontline
workers to care for persons with disabilities residing in both
institutions and in the community.
CRS-9
Demographic Trends
Pennsylvania is one of most populous states in the United States. With 12.3
million people in 2000, it ranks as the sixth largest state. It also is one of the states
with the oldest population. Its population aged 65 and older – 1.9 million persons in
2000 – represents 15.6% of its total population ranking it second highest in the
nation, following only Florida (Table 1).
Pennsylvania’s total elderly population grew by less than 5% in1990-2000 but
its population age 85 and older, those in greatest need for long-term care services,
grew by 38.3%. The proportion of Pennsylvania’s population aged 85 and older is
seventh largest in the nation. From 1990 to 2000, the state experienced a 21%
increase in the population aged 75 to 84, those at near risk of needing assistance with
daily tasks (Table 1).
Table 1. Pennsylvania Population Age 65 and Older,
1990 and 2000
1990
2000
2000
1990-
population
Percent of
Percent of
2000
rank in U.S.
total
total
percent
(based on
Age
Number
population
Number
population
change
percent)
65+
1,829,106
15.4
1,919,165
15.6
4.9
2
65-74
1,070,021
9.0
969,272
7.9
-9.4
3
75-84
587,249
4.9
712,326
5.8
21.3
2
85+
171,836
1.4
237,567
1.9
38.3
7
Under 65
10,052,537
84.6
10,361,889
84.4
3.1
50
Total
11,881,643
100
12,281,054
100
3.4
6
Source: U.S. Census Bureau. Profile of General Demographics for Pennsylvania: 1990. 2000:
[http:// www.census.gov/census2000/states/pa.html]. Percentages may not sum to 100 due to rounding.
Pennsylvania, as all states, will experience large increases in its older population
over the next 25 years. By 2025, its 65 and older population will increase by 40%
(see Figure 1). In 2025, 21% of Pennsylvania’s population will be 65 years or older,
compared to 18.5% for the nation (Table 2). While its older population will not
experience a percentage growth as large as that of the total U.S. elderly population,
its proportion of older people will exceed that of the nation and it will continue to
outrank many other states.
CRS-10
Figure 1. Percentage Population Increase in Pennsylvania,
2000-2025
6 0 %
6 5 +
4 0 %
2 0 %
8 5 +
0 %
To ta l
-2 0 %
U n d e r 6 5
2 0 0 5
2 0 1 0
2 0 1 5 2 0 2 0
2 0 2 5
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
Populations Projections: Every Fifth Year.
Table 2. Elderly Population as a Percent of Total Population,
Pennsylvania and the United States, 2025
Percent of total
Percent of total
population,
population,
Age
Pennsylvania
United States
65+
21%
18.5%
65-74
11.8%
10.5%
75-84
6.7%
5.8%
85+
2.4%
2.2%
Under 65 population
79%
81.5%
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
Populations Projections: Every Fifth Year.
CRS-11
Need for Long-Term Care
Table 3 presents estimates of the number of persons aged 18 and over who have
limitations in two or more activities of daily living (ADLs) in Pennsylvania. These
estimates were derived from data generated by The Lewin Group, Inc., and combine
national level data on persons with disabilities with state-level data from the U.S.
Census Bureau on age, income, and broad measures of disability. Persons aged 85
and over with two or more limitations in ADLs are estimated to increase by 22% by
2010. This growth will place pressure on public and private long-term care
resources.
Table 3. Estimated Number of Persons with Two or More
Limitations in Activities of Daily Living (ADLs), by Poverty Status,
in Pennsylvania
2002
2005
2010
Percent
of
poverty
Persons with 2+ ADLs by age and income
18-64
65+
85+
18-64
65+
85+
18-64
65+
85+
Up to
7,614
7,474
1,955
7,717
7,536
2,125
7,810
7,730
2,392
100%
Up to
11,350
20,178
5,552
11,504
20,412
6,036
11,641
20,791
6,796
150%
Up to
14,860
29,414
7,983
15,062
29,752
8,678
15,242
30,242
9,770
200%
All
31,924
66,274
19,065
32,361
67,155
20,724
32,741
68,395
23,334
incomes
Source: CRS analysis based on projections generated by The Lewin Group, Inc. through the HCBS State-by-State
Population Tool available on-line from: [http://www.lewin.com/cltc]. The Lewin Group Center on Long Term Care
HCBS Population Tool, by Lisa M.B. Alecxih, and Ryan Foreman (2002).
CRS-12
Administration of Long-Term Care Programs
State and Local Administration
Responsibility for administration and management of long-term care services
for the elderly and persons with disabilities is spread among several state agencies.
In addition, various sub-state agencies have responsibility for various aspects of long-
term care administration and services. Figure 2 displays an organization chart of
state and local agencies with responsibilities for administration of long-term care.
The Department of Aging administers home and community-based services for
the elderly, including the Medicaid 1915(c)waiver program for the elderly known as
the Pennsylvania Department of Aging waiver (PDA) and Older Americans Act
programs.
The Department of Aging is host to the Intra-Governmental Council on Long-
Term Care, which serves in an advisory role and is chaired by the Secretary of the
Department of Aging. The Council’s mission is to study Pennsylvania’s long term
care system and to provide options and recommendations to the Governor, the
General Assembly, and state government administration on consumer access to the
long-term care system, financing of long-term care services, and ways to streamline
the system so that it will be responsive to the needs of consumers and their families.
The Council was established by the Select Committee on Long-Term Care in the
Pennsylvania House of Representatives in 1986. Then, in March 1988 the Council
was created by Executive Order of the Governor, and in December 1988, Act 185
codified the Council in Pennsylvania state law. In 1996, Governor Tom Ridge
appointed members representing diverse areas related to long-term care. The Council
is comprised of 37 members, including 5 members of the Cabinet, 4 members of the
General Assembly, representatives from consumer groups, and service providers
appointed by the Governor. The Council has developed numerous high-profile state
reports.11
The Department of Public Welfare (DPW) is one of the largest state human
service agencies in the nation with over 23,000 employees. DPW administers the
Medicaid program, including Pennsylvania’s Section 1915(c) waiver programs.
DPW and the Department of Aging jointly administer the Section 1915(c) waiver
program for the elderly. DPW also houses the Office of Mental Retardation, which
administers state-operated institutions for the mentally retarded; and the Office of
Social Policy which is responsible for the licensing of the state’s personal care
homes.
The Department of Health is responsible for licensing and certification of
nursing homes and home health agencies. The Department conducts over 5,000
nursing home inspections each year, including licensure and certification surveys,
11 For example, Options in Long-Term Care, February 1990; Long-Term Care for the 21st
Century: A Time for Change, Sept. 1996; Pennsylvania’s Frontline Workers in Long-Term
Care, Feb. 2001; Home and Community-Based Services Barriers Elimination Work Group,
Mar. 2002.
CRS-13
follow-up surveys and complaint investigations. It also operates a nurse aide registry
containing information on over 154,000 nurse aides in Pennsylvania.
CRS-14
Figure 2. Pennsylvania Long-Term Care System
Source: Prepared by CRS based on Pennsylvania documents.
CRS-15
Responsibility for Financial and Functional Eligibility
Determinations
Pennsylvania has 67 counties and 67 county offices in about 80 locations in the
state. Responsibility for various aspects of administration and management of long-
term care services is divided among the county agencies and 52 area agencies on
aging that operate on a individual-county or multi-county basis.
County assistance offices (under supervision of the Office of Income
Maintenance, DPW) are uniformly responsible for determination of Medicaid
financial eligibility for persons applying for nursing home and home and community-
based care for persons with disabilities of all ages – persons aged 60 and older,
younger persons with disabilities aged 18-59, and persons with mental retardation of
all ages.
The state is phasing in use of an on-line financial eligibility determination
system, Commonwealth of Pennsylvania Application for Social Services
(COMPASS).12 The system is intended to serve as single access point for a wide
variety of programs, including health care coverage, food stamps, and cash assistance
benefits. Use of COMPASS for eligibility determinations for long-term care services
is to be phased in by 2003.
Area agencies on aging (authorized under Title III of the Older Americans Act)
carry out a number of long-term care responsibilities for both persons aged 60 and
older as well as for younger persons with disabilities aged 18 through 59 under
contract with DPW. Area agencies perform pre-admission screening for persons of
all ages applying for nursing home care. They also are responsible for determining
level of care and services assessment for persons aged 18 and over applying for home
and community-based care under Medicaid waiver and state-funded programs.
Area agencies conduct client assessments and determine need for services using
a uniform statewide tool, the OPTIONS Assessment Forms.13 There are two forms
used, one for community services assessments, and one for nursing facility
assessments. The assessment tool is a comprehensive instrument that assesses a
person’s physical and cognitive functioning, limitations in activities of daily living
(ADLs) and instrumental activities of daily living (IADLs), availability of formal and
informal supports, physical environment and social participation, among other
variables. This tool has been the standard instrument used since the 1980s.
County offices of mental retardation are responsible for case management and
service delivery for persons with mental retardation across the state. The Mental
Health/Mental Retardation Act of 1966 established the framework for Pennsylvania’s
12 [www.compass.state.pa.us].
13 Pennsylvania Department of Aging. Options Assessment Forms (Comprehensive
OPTIONS Assessment Form) and the Nursing Facility OPTIONS Assessment Form.
CRS-16
service system for people with mental retardation.14 The statute set out state
responsibilities for funding and licencing of state institutions for mental retardation.
In the 67 counties, there are 46 county offices that are responsible for assessment and
case management of services for persons with mental retardation.
Pennsylvania’s Long-Term Care Services for the
Elderly and Persons with Disabilities
Trends in Institutional Care
There are almost 780 nursing homes with about 95,000 beds in Pennsylvania.
According to state officials, the total number of facilities has remained fairly stable
over the last 20 years. The number of beds per 1,000 elderly persons is somewhat
lower than the national average. There are about 51 beds per 1,000 persons aged 65
and older, and 401 beds per 1,000 elderly persons aged 85 and older, as compared to
53 and 435, respectively, for the United States as a whole (Table 4). The occupancy
rate is 89.7%, higher than the national average of 80.8%.
Table 4. Nursing Home Characteristics in Pennsylvania
and the United States
(data are for 1999-2000 unless otherwise noted)
Characteristic
Pennsylvania
United States
Number of facilities
778 17,023
Number of residents
84,588
1,490,155
Number of beds
95,083 (2000)
1,843,522
Number of Medicaid beds
88,950 (2001)
841,458
Number of total beds per 1,000 pop. aged 65 and older
51.1 (2000)
52.7
Number of total beds per 1,000 pop. aged 75 and older
100.1 (2000)
111.1
Number of total beds per 1,000 pop. aged 85 and older
401.2 (2000)
434.8
Occupancy rate
89.7% (2000)
80.8%
Source: Data come from the following sources: For Pennsylvania: For total beds and occupancy, and
facilities, Pennsylvania Department of Health, Bureau of Health Statistics, Data from the long-Term
Care Facilities Questionnaire; for Medicaid beds, Long-Term Care in Pennsylvania Briefing Book,
Department of Public Welfare, Apr. 22, 2002; for residents, American Health Care Association, Facts
and Trends: The Nursing Facility Source book. For the U.S., American Health Care Association.
14 County offices of mental health and mental retardation are authorized under Pennsylvania
state statute, the Mental Health and Mental Retardation Act of 1966. Pa. State. Ann. 50.
CRS-17
As in most states, long-term care in Pennsylvania is dominated by spending for
nursing home care. In FY2001, of total long-term care spending under Medicaid,
72% was spent on care in nursing homes. Pennsylvania state officials as well as
long-term care stakeholders indicate that the financing incentives inherent in
Medicaid cause a bias toward institutional care spending.
Changes in financial incentives and provider culture regarding use of institutions
are difficult to achieve. Nonetheless, Pennsylvania policy entails a number of
strategies that affect institutional care utilization.
Development of Medicaid Nursing Home Participation Review Program (PRP).
In 1996, the State Assembly allowed the state’s certificate of need (CON) program
for health care providers to sunset. After that time, the number of nursing home
facilities and beds increased. In recognition of this and the state’s goal to control
surplus growth, in 1998, the Department of Public Welfare instituted the PRP – a
process of reviewing the need for nursing home facilities and beds that participate in
Medicaid. Nursing homes seeking to participate, either as new facilities, or as an
expansion of existing facilities, must be approved by DPW through the PRP. The
main objective of the PRP is to “respond to consumers’ desire to age in place by
redirecting limited state resources from higher-cost, less preferable institutional
settings to more cost-effective home and community-based services, through
encouraging the development of other components of the array of long-term care
services.”15
The state reviews an application from a provider on a case-by-case basis using
a number of criteria including Medicaid program need; availability of home and
community-based services in the area; and economic and financial feasibility. This
procedure is intended to implement the Department’s goals of promoting home and
community-based services and control the number of nursing home beds that enter
the market.
Implementation of Medicaid Section 1915(c) Waiver Program. In January 1999,
the state implemented its Section 1915(c) waiver program (Pennsylvania Department
of Aging waiver) for persons aged 60 and older on a statewide basis. The waiver
provides a wide range of home and community-based services to persons who meet
the nursing home level of care requirements and is intended to divert persons from
use of nursing homes. Area agencies on aging are under contract with DPW to carry
out level of care determinations for both home and community-based services under
the waiver program for the elderly and most younger persons with disabilities. Area
agencies also perform level of care determinations for nursing home care. According
to state officials interviewed, because area agencies are community-based
organizations, they have the capacity to access community-based services for those
persons who could be cared for in the community and to divert persons from nursing
homes when possible.
According to state officials, implementation of the PRP in January 1998, as well
as statewide implementation of the PDA waiver, have reduced utilization of
15 Long-Term Care In Pennsylvania, Briefing Book, p. 15.
CRS-18
Medicaid patient days.16 The average occupancy of Medicaid facilities declined from
92.1% in February 1998 to 88.8% in October 2001. Since January 1998, the number
of Medicaid-certified beds has dropped from 90,750 to 88,950 in 2001. The number
of facilities has dropped from 665 to 653 in 2001.17
In addition to these strategies to control Medicaid nursing home utilization, state
officials indicate that the characteristics of nursing home users have changed. Acuity
levels of patients entering nursing homes have increased in recent years. This is
attributed to a greater use of home and community-based services that delays entry
into nursing home care until older ages.
Trends in Home and Community-Based Care
Pennsylvania supports a wide range of home and community-based services for
the elderly and persons with disabilities, comprised chiefly of a series of Medicaid
Section 1915(c) waiver programs, and two state-funded programs for persons who
do not qualify for waiver services. The waiver programs, while intended to provide
a base of support to persons with disabilities, are targeted, carefully designed with
caps on the cost of services, and have very specific eligibility groups with stringent
income and asset tests. In addition, using state funds, the state has developed a
unique way to address some of the financial barriers that inhibit access to home and
community-based care through Medicaid. Two sources of funding, specifically the
Pennsylvania State Lottery and the state’s share of the tobacco settlement funds (see
section below on financing) open access to persons who otherwise would not qualify
financially for waiver programs.
Other actions the state has taken to improve information and access to home and
community-based care include: establishing a long-term care web-based helpline and
website [www.longtermcare.state.pa.us]; developing consumer-friendly publications
and a media campaign explaining the range of home and community-based services
available; establishing a program to allow persons residing in nursing homes to
transition to the community; and phasing-in a web-based financial eligibility
application process for long-term care.18
Although progress has been made in increasing options for home and
community-based care for the elderly and persons with disabilities, according to a
report authored by state officials and long-term care stakeholders, the state “has not
completely purged its long history of institutional bias from its long-term care
system.”19 The report indicated that in 2000, the state’s public funding supported
over 54,208 elderly and younger persons with disabilities in nursing homes – 92%
of the total – compared to 4,563 persons in home and community-based settings –
16 Ibid., p. 21.
17 Ibid., p. 18.
18 Pennsylvania Intra-Governmental Council on Long Term Care. Home and Community-
Based Services Barriers Elimination Work Group. Mar. 2002, p. 4. (Hereafter referred to
as Home and Community-Based Services Barriers Elimination Work Group.)
19 Ibid.
CRS-19
8% of the total. An additional 11,000 persons resided in personal care homes only
partially funded with public funds.20
Medicaid 1915(c) Waivers. Pennsylvania administers eight waiver
programs for the elderly and persons with disabilities (two waivers for persons with
mental retardation and developmental disabilities are discussed below and another
waiver for infants and children is outside the scope of this report). Certain general
principles apply to each of the waivers. First, in order to qualify for services, persons
must have income that does not exceed 300% of the Supplemental Security Income
(SSI) eligibility level ($1,656/month in 2003 for an individual) and must meet SSI’s
assets limit of $2,000 (for an individual).21 Second, except for one waiver program
(Elywn), all are operated on a statewide basis.
The following describes target groups, services, number of persons served, and
cost caps for each of the waivers (for more detailed information, see Appendix
Table A-1.)
! Pennsylvania Department of Aging (PDA) Waiver. The PDA waiver
provides a wide range of services for persons aged 60 and older.
Persons must meet the state’s requirements for nursing facility level
of care. Services available include attendant care; companion
services; environmental modifications; home-delivered meals; home
health services; home support services; adult day care services;
personal care services; personal emergency response system (PERS);
respite care; specialized medical equipment and supplies; and
transportation. The PDA waiver served 9,309 persons in State Fiscal
Year (SFY) 2001-2002 and 10,049 slots are approved for SFY2002-
2003. The cost cap for the PDA waiver is $35,000 (the equivalent
of 80% of the nursing facility rate, excluding the costs of case
management and administration) and is applied on an individual
basis. The average cost of the PDA waiver in SFY2001-2002 was
$8,136 per person.
! Attendant Care Waiver. The Attendant Care Waiver was initiated
to serve a group of persons who had been on a waiting list for a
previously state-funded program for persons with physical
disabilities (ACT 150 program). Persons eligible are those aged 18-
59 who meet the state’s requirements for nursing home eligibility as
well as meet the state’s definition of disability. They must also be
capable of selecting and supervising attendants, and of managing
their own financial and legal affairs. Services included in the
Attendant Care Waiver are: basic care services, such as helping the
consumer in and out of bed, wheelchair, and/or motor vehicle; and
assistance with routine bodily functions such as bathing, grooming
20 Ibid., p.5. Note: persons in personal care homes partially fund their own room and board
through their own SSI payments.
21 Certain items are excluded, such as an individual’s home; up to $2,000 of household
goods and personal effects; life insurance policies with a face value of $1,500 or less; an
automobile with value up to $4,500; and burial funds up to $1,500, among other things.
CRS-20
and eating. When a client in the attendant care waiver program turns
age 60, the PDA waiver can continue services and the client may
keep the same provider. The program has 2,396 DHHS approved
slots and served 1,804 persons in SFY2001-2002. The cost cap for
the Attendant Care Waiver is $38,059, which is assessed on a
statewide aggregate basis.
! Independence Waiver. The Independence Waiver provides a wide
range of services to persons age 18 years and over who have
substantial functional limitations in at least three of the following
areas: self-care; understanding and use of language; learning; self-
direction; capacity for independent living; and mobility. Persons
must meet the nursing home level of care. Those with a primary
diagnosis of a mental illness or with mental retardation, or who are
ventilator dependent are not eligible for services under this waiver.
Services include service coordination; assistance with daily living;
respite care; environmental accessibility adaptions; and specialized
medical equipment and supplies. A relatively small number of slots
are DHHS-approved – 403 as of December 2002. As of December
2002, 452 individuals were receiving services (As of December
2002, the state was in the process of amending its waiver to increase
the number of approved slots.) The aggregate cost cap is $42,116
(average per case).
! Michael Dallas Waiver. The target group for this waiver is persons
of all ages who are technology dependent (that is, those who require
technology to sustain life or replace a vital bodily function) and
whose private insurance has been exhausted. The waiver was
originally initiated for children in 1987, then was expanded in 2001
to include adults. Services provided include: case management;
private duty nursing; attendant care; respite; durable medical
equipment and nutritional supplements. The cost cap for this waiver
is $236,000 per year which is applied on an aggregate basis. Costs
range from $180,000 to $200,000 per year per individual. In
SFY2001-2002, 136 slots were DHHS-approved with 57 persons
enrolled.
! Elwyn Waiver. The only waiver program that is not statewide, this
waiver provides services to a specially targeted group of persons age
40 and over who are deaf, blind or deaf/blind who live in Delaware
County in an assisted living facility. The waiver was initiated to
provide assisted living services to persons who resided in a nursing
home that was being closed. A relatively small waiver, it has 45
DHHS-approved slots with 39 people enrolled in 2002. The annual
cost cap for this waiver is $23,000 and is applied on an individual
basis.
! AIDS Waiver. This waiver provides services to persons aged 21
through 64 who have symptomatic HIV and AIDS, who do not have
Medicare coverage, and who are not eligible for hospice care. The
waiver is administered by managed care plans in managed care areas
and under fee-for-service agreements in areas that are not covered by
managed care plans. Services include skilled nursing and home
health aid; homemaker services; supplies and nutritional
CRS-21
supplements not covered by Medicaid; and nutritional consultations
by registered dieticians. The waiver is approved to serve up to 250
people, and 78 people were enrolled in SFY2001-2002. The annual
cost cap is $14,000 per year and is applied on an individual basis.
! Commcare Waiver. The most recent waiver, initiated in April 2002,
the Commcare waiver provides services to prevent
institutionalization of persons with traumatic brain injury (TBI).
Persons must have substantial functional limitation in three or more
major life activities. Services include care coordination; personal
care; respite prevocational and habilitation and support services; and
supported employment, among others. Services may be provided to
persons living in group living arrangements with up to six beds. As
of December 2002, three individuals were being served under this
waiver which has received DHHS approval for 98 slots. The
aggregate cost cap for the wavier is $146,740.
State Programs. There are a number of pathways that establish Medicaid
eligibility for home and community-based long-term care services. These include
coverage of persons whose income does not exceed 300% of the federal SSI payment
level, as allowed under the Section 1915(c) waiver program and used for the Section
1915(c) waiver programs in Pennsylvania. However, despite use of this more liberal
standard, there are still many people who need home and community-based services,
but who cannot meet the income limits or resource tests under Medicaid, and who
cannot afford home and community-based services. Many of these persons could not
establish eligibility until they spend-down almost all their resources and income, and
by that time, are in danger of having to go into an institution. One of the issues many
states have confronted is how to provide services for such persons. Pennsylvania has
addressed this issue through two state-funded programs that provide services using
more liberal income or resource tests than required under the waiver programs.
These state-funded programs for the elderly provide services that are similar to
the PDA waiver, but expand eligibility requirements to include persons financially
ineligible for the waiver. The Bridge Program provides services to persons who
cannot meet the Medicaid resource test limitation, and the Options Program provides
services to persons who have income above the Medicaid limit for persons in the
waiver (300% of the federal SSI level). Both programs require different forms of
cost-sharing by participants.
The Bridge Program. Implemented for the first time in January 2002, this
program provides home and community-based services similar to those under the
PDA waiver, but to persons aged 60 and over who have assets greater than the $2,000
limit required under the waiver. Persons may have assets up to $40,000 and qualify
for services, but must still meet the waiver income test. The program is unique in its
cost-sharing system. Each beneficiary is required to pay 50% of the cost of direct
services, such as homemaker, chore, home-delivered meals, and home health care;
the remaining 50% is covered by the program. The cost-sharing system allows
persons with higher resources to receive services; and when they “spend down” their
resources, they may qualify under the Medicaid PDA waiver.
CRS-22
The Bridge Program is financed through the state’s tobacco settlement funds.
As of April 2002, 200 persons had enrolled in the program. The cost cap for the
Bridge program is the same as the PDA waiver.
Options Program. Financed through the Pennsylvania State Lottery, the
Options Program provides assessment, case management, and pre-admission
screening for persons aged 18 and over applying for nursing home care, and for SSI
eligible persons applying for residence in a domiciliary or personal care home. For
the elderly, the program supports a wide range of home care services similar to those
provided by the PDA waiver.
The unique aspect of the Options Program is its financial eligibility criteria.
Eligibility is based on a sliding scale of income with beneficiary cost-sharing.
Beneficiaries whose income is below 125% of the federal poverty level (FPL) are not
required to pay for services. (About two-thirds of participants fall into this category.)
Persons with income from 125% up to 300% of the FPL pay for services on a sliding
fee scale basis; persons with income above 300% are required to pay the full cost.
Unlike either the waiver or Bridge program, resources are not considered in
determining eligibility. The SSI limit on resources used to determine Medicaid
eligibility ($2,000 for an individual) disqualifies many persons who would otherwise
be eligible on the basis of income.
For SFY2001-2002 about 91,000 persons were served. The cost cap for the
Options program is $625 per month applied on an individual basis.
Family Caregiver Program. Inspired by former Pennsylvania Governor Casey,
the state initiated a family caregiver program in 1987, and it became statewide in
1991. This program served as a model for the Older Americans Act family caregiver
program that Congress enacted in 2000 (P.L. 106-501). The program, now funded
by both the Older Americans Act and state funds, as well as by the state lottery
funding, provides services to persons age 60 and older or persons with chronic
dementia or Alzheimer’s disease and their families.
Area agencies on aging assist family caregivers assess their needs in caring for
family members. Caregivers choose the services most needed to help them care for
their relatives. Services include assessment of need, counseling on coping skills and
caregiver training, respite, financial assistance to purchase supplies or services, one-
time grants for home adaptations, and benefits counseling.
Families receive assistance on a cost-sharing basis and may receive from $200
to $500 a month in services or caregiving supplies to assist with out-of-pocket
expenses. (The average monthly expenditure for recipients is about $350.)
In order to be eligible for assistance, family caregivers must provide the majority
of care and must be doing it without charge. Except for assessment, case
management, benefits counseling, and caregiver education and training, families
receive services and/or supplies on a cost-sharing basis, as follows:
! persons with income below 200% of the federal poverty level (FPL)
receive assistance without charge;
CRS-23
! persons with income between 200% up to 380% of the FPL receive
assistance on a sliding fee scale basis;
! persons with income of 380% of the FPL or more may receive
services but are not eligible for cash reimbursements.
About 10,000 persons receive services under the family caregiver program at
any given time. In FY2002-2003, the state will spend $17.8 million on the program
($11.5 from state funds and $6.3 from federal sources).
CRS-24
Pennsylvania’s Long-Term Care Services for
Persons with Mental Retardation and
Developmental Disabilities
Overview
Services to persons with mental retardation and other development disabilities
in the United States have changed dramatically over the last half of the 20th country
as a result of a number of converging factors. These include the advocacy efforts of
families and organized constituency groups, 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 significant litigation brought on behalf
of persons with mental retardation.22
Pennsylvania’s system of services for persons with mental retardation has been
influenced by a number of significant factors. These include:
! the passage of Pennsylvania’s Mental Health/Mental Retardation Act
of 1966, which established state responsibility for funding and
licensing of services, and made county government responsible for
program administration, service delivery and case management;23
! the 1977 settlement of Pennhurst State School and Hospital v.
Haldeman, which ordered the closure of a large state institution and
became one of the most important cases influencing care of the
persons with mental retardation in the United States;
! the initiation of the Medicaid Section 1915(c) home and community-
based waiver services option in 1983;
! a 1991 Pennsylvania initiative entitled Everyday Lives which set
forth values governing services for persons with mental retardation,
and a vision of self-advocacy, community services and supports for
families;
! a 1997 Multi-Year Plan which set forth actions to be accomplished
to improve self-determination for persons with mental retardation
and quality of care, including increased community services
options;24
22 For a detailed history of the development of services for persons with developmental
disabilities, see The State of the States in Developmental Disabilities by David Braddock,
Richard Hemp, Susan Parish, James Westrich. University of Illinois at Chicago. American
Association on Mental Retardation, Washington, 1998. (Hereafter cited as Braddock, et.
al., The State of the States in Developmental Disabilities, 1998.)
23 Pa. State. Ann. 50, Section 4101, et. al.
24 Pennsylvania Department of Public Welfare, Planning Advisory Committee to the Office
Of Mental Retardation, A Multi-Year Plan for Pennsylvania’s Mental Retardation Service
System, July 1997. (Hereafter cited as Office of Mental Retardation, A Multi-Year Plan.)
CRS-25
! a 1999 plan to reduce the size of waiting lists for services;25 and
! a 5-year plan initiated in 2002, Everyday Lives: Making It Happen,
which seeks to implement the vision for services developed by
stakeholders.26
There are an estimated 115,000 persons of all ages with mental retardation in
Pennsylvania. The State Fiscal Year 2002-2003 budget for services for persons with
mental retardation is $1.9 billion. More than 70% of the total budget supports 82,000
persons in a variety of home and community-based care settings.27
Trends in Institutional Care
The early history of services to persons with mental retardation nationwide 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 to
serving almost 200,000 individuals nationwide in 165 free-standing state-operated
mental retardation institutional facilities.28 Today, some states are still faced with the
legacy of large state-operated institutions.
In the nation as a whole and in Pennsylvania, over the last several decades,
many large state-operated institutions have been closed or downsized, a development
that has been prompted by litigation. One of the earliest and most publicized cases
on behalf of persons with mental retardation residing in these institutions was filed
in Pennsylvania in1976, Pennhurst State School and Hospital v. Haldeman. The case
was ultimately heard by the U.S. Supreme Court. The Pennhurst State School and
Hospital, opened in 1908, once housed over 4,000 individuals with mental
retardation in Chester County, Pennsylvania. In 1977, U.S. Judge Raymond
Broderick ordered the state-run institution to be closed after hearing evidence of the
facility’s abuse and neglect of patients in the case. Even decades later, this landmark
case continues to profoundly affect the care of mentally retarded children and adults,
as well as other individuals receiving long-term care in institutions.
Although parents of the Pennhurst residents initially filed the lawsuit to improve
conditions in the facility, their legal representative, the Public Interest Law Center,
encouraged them to focus on the broader issue of whether adequate care could ever
be achieved in large institutional settings, such as Pennhurst. The case ultimately
recognized the rights of citizens with mental retardation to have access to
community-based care. After more than a decade of legal battles, the
Commonwealth of Pennsylvania reached a settlement with the Association of
25 Pennsylvania Department of Public Welfare, Office of Mental Retardation, A Long Term
Plan to Address the Waiting List for Mental Retardation Services in Pennsylvania, Oct.
1999. (Hereafter cited as Office of Mental Retardation, A Long-Term Plan to Address the
Waiting List.)
26 Pennsylvania Office of Mental Retardation, Program Overview, 2002.
27 See website: [http://www.dpw.state.pa.us/omr]
28 Braddock, et. al., The State of the States in Developmental Disabilities, 1998.
CRS-26
Retarded Citizens (now known as the ARC), the families of the Pennhurst residents,
and the U.S. District Court in 1986. Pennhurst was closed in 1988. The state
eventually closed most of its state-run institutions for the mentally retarded and
placed residents in small community-based facilities with improved access to care.
In addition to profoundly altering the quality of care for the mentally retarded in
Pennsylvania, the case has provided a legal basis for other groups currently living in
institutional settings to argue for access to community-based services. Because a
settlement was reached with the plaintiffs, the impact of the lawsuit only directly
impacted the Commonwealth of Pennsylvania, but the implications of the lawsuit
were felt across the country as policies toward persons with mental retardation in
institutions began to shift. Another related Pennsylvania case, Youngberg v. Romeo,
originally filed in 1976 and later heard by the U.S. Supreme Court, established the
rights of residents to receive basic services and to be free of undue restraint.29
As in most states, the number of persons residing in large state institutions in
Pennsylvania has declined dramatically over the years partly as a result of litigation.
Since 1960, Pennsylvania has closed 17 large state facilities and significantly
downsized others. Some of these facilities date back to the very end of the 19th
century or early part of the 20th century. (See Appendix Table 2 for a list of the
institutions that have been closed and those in operation and their 2001 census.)
Persons living in large institutions with 16 or more persons declined from 43.7%
of all persons living in group residences in Pennsylvania to just under 30% in 2000.
This decline is primarily due to the downsizing and closure of the large state
institutions since 1990. In 1990, almost two-thirds of persons in large facilities were
residing in state institutions compared to 30% in 2000. The decline in the census in
large state institutions is not reflected in the use of large private institutions,
however. This is primarily due to the use of private facilities funded as intermediate
care facilities for the mentally retarded (ICFs/MR) under Medicaid. The proportion
of persons residing in these private facilities with 16 or more beds was 31% in 1990
and was about the same proportion (29%) in 2000 (Table 5).
The Medicaid home and community-based services waiver option (discussed
below) has allowed Pennsylvania to focus on development of small congregate care
options. In 2000, almost 22,000 persons with mental retardation were living in group
residential settings, with the majority (68%) living in residences of six or fewer
persons. This is an increase since 1990 when 47% of the total in group residences
were in small facilities (see Table 5).
29 Braddock, et. al., The State of the States in Developmental Disabilities, 1998, p. 9. See
also, U.S. Supreme Court, Youngberg v. Romeo 457 U.S. 307 (1982) Decided June 18, 1982.
CRS-27
Table 5. Persons with Mental Retardation and Developmental
Disabilities Served in Residential Settings, by Size of Setting,
1990, 1995, and 2000
Persons served by residential setting
1990
1995
2000
15,007
19,051
21,948
Setting by size
(100%)
(100%)
(100%)
6,567
8,000
6,376
16+ PERSONS
(43.8%)
(42%)
(29.1%)
Nursing facilities
not available
2,235
2,350
State institutions
4,043
3,460
1,969
Private ICFs/MR
2,041
1,989
1,869
Other residential
483
316
188
1,429
1,078
689
7 - 15 PERSONS
(9.5%)
(5.7%)
(3.1%)
Public ICFs/MR
0
0
0
Private ICFs/MR
1,135
724
463
Other residential
294
354
226
7,011
9,973
14,883
<6 PERSONS
(46.7%)
(52.3%)
(67.8%)
Public ICFs/MR
0
0
0
Private ICFs/MR
0
695
643
Other residential
7,011
9,278
14,240
Source: Disability at the Dawn of the 21st Century and the State of the States, David Braddock, editor,
with Richard Hemp, Mary C. Rizzolo, Susan Parish, and Amy Pomeranz, American Association on
Mental Retardation, Washington, 2002.
Pennsylvania has used the Medicaid waiver options to increase community
service options and small group residences and reduce the number by large facilities.
However, according to data compiled by Braddock et. al., Pennsylvania ranked only
25th in the Nation in its use of small facilities (based on the percent of individuals in
residences of six or fewer persons).30 There is a belief on the part of state officials
and stakeholders that the use of larger facilities should be further reduced in keeping
with the state’s commitment to community-based care. The state’s 1997 Multi-year
30 Disability at the Dawn of the 21st Century and the State of the States, David Braddock, ed,
American Association on Mental Retardation, Washington, 2002, p. 86. (Hereafter cited
as Braddock, Disability at the Dawn of the 21st Century, 2002.)
CRS-28
Plan recommended that the Office of Mental Retardation move, over a 5-year period
beginning in 1997-98, 1,500 persons who resided in large public facilities to
community living services.31 Data compiled by the Office of Mental Retardation
show that in 2001, about 1,700 persons resided in state facilities. Another goal of the
Multi-Year Plan was to transfer 2000 people from private ICFs/MR facilities to
services under the waiver program.32
Trends in Home and Community-Based Care
As the number and size of facilities has decreased over the years, the state has
made significant use of Medicaid financing for community-based care. In
Pennsylvania, as in many states, the Medicaid Section 1915(c) waiver program is the
chief source of revenue for home and community based services for this group.
Unlike the service system for the elderly and disabled where the state has access to
state lottery and tobacco settlement funds to complement federal sources, the waiver
program is considered the chief financing source for community-based care.
Medicaid 1915(c) Waivers. Consolidated Waiver for Individuals with
Mental Retardation. The largest waiver program, both in terms of persons served
and expenditures for any one population group with disabilities in Pennsylvania, is
the Consolidated Waiver for Individuals with Mental Retardation. This waiver has
16,491 slots approved by Center for Medicare and Medicaid Services (CMS) for
SFY2002-200333 and provides a wide range of services to persons age 3 and older
who have mental retardation.34 Persons with developmental disabilities who do not
have mental retardation are not generally covered under this waiver, but can receive
services under the Omnibus Budget Reconciliation Act (OBRA) waiver, described
below.
A wide range of services are provided: including habilitation (residential and
day habilitation); prevocational services; supported employment; transportation;
respite care; private duty nursing; specialized therapies; and permanency planning for
children and youth. The cost cap is applied on an aggregate basis to individuals
receiving services across the state; the average per capita costs of waiver services for
2002-2003 is $52,143.35 About 13,614 persons were served in SFY2001-2002.
31 Office of Mental Retardation, A Multi-Year Plan, p. 10.
32 Ibid.
33 CMS has approved the following slots for this waiver: for July 1, 2001-June 30, 2002,
15,493; for July 1, 2002-June 30, 2003, 16,491; for July 1, 2003-June 30, 2004, 17, 387; and
for July 1, 2004-June 30, 2005, 18,279 slots. Letter from CMS Acting Regional
Administrator to Secretary of the Department of Public Welfare, Jan. 29, 2001. (Hereafter
cited as Letter from CMS, Jan. 29, 2001.)
34 In addition to the waivers described, the Department of Public Welfare, Office of Mental
Retardation administers a Medicaid Section 1915(c) waiver program for infants and children
which is outside the scope of this report.
35 Letter from CMS, Jan. 29, 2001.
CRS-29
The Person/Family Directed Waiver. This waiver provides services to the same
population and with similar services as the Consolidated Waiver. The chief
differences between the two waivers is a lower cost cap and the fact that this waiver
is applied on an individual, rather than aggregate basis. The cost cap for this waiver
is $21,225 for SFY2002-2003. About 6,218 persons were served under this waiver
in SFY2001-2002. For SFY2002-2003, 7,361 slots are approved.
OBRA Waiver. A third wavier, which focuses on a broader category for persons
with developmental disabilities, is the OBRA Waiver.36 The purpose of the OBRA
waiver37 is to move persons with development disabilities from nursing homes to
community settings and to prevent persons with physical disabilities from being
institutionalized. Persons eligible are those with severe chronic disabilities attributed
to cerebral palsy, epilepsy, and other developmental disabilities whose onset occurred
prior to age 22; and whose conditions are likely to continue indefinitely and result in
substantial functional limitations in three or more major life activities.
A wide range of services is available under the OBRA waiver, including service
coordination; assistance with daily living; respite care; environmental adaptions;
assistive technology/specialized medical equipment and supplies; physical, speech
and occupational therapies; prevocational and supported employment services. A
relatively small waiver, it has 356 CMS approved slots. As of December 2002, about
377 consumers were being served. (As of December 2002, the state was in the
process of amending its waiver to increase the number of slots.) The aggregate cost
cap for the OBRA waiver is $129,949 for SFY2001-2002.
Financing Long-Term Care in Pennsylvania
In most states, the federal-state Medicaid program is the chief source of
financing for long-term care. In Pennsylvania, the Medicaid program accounted for
$5.1 billion in long-term care spending in FY2001. In addition, state resources,
through the Pennsylvania State Lottery and the state’s share of the tobacco
settlement, provided about $232 million for home and community-based long-term
care services for the elderly in SFY2001-2002. State revenue supported over $819
million for services for persons with mental retardation in 2000.
36 This waiver is administered by the Department of Public Welfare, Office of Social
Programs. It is listed here because the target group is persons who have developmental
disabilities. Waivers for persons with mental retardation are administered by the
Department of Public Welfare, Office of Mental Retardation.
37 The waiver is named after the federal law (the Omnibus Budget Reconciliation Act) that
required persons with mental retardation/developmental disabilities to be screened to
determine appropriate placement to meet their unique needs (PASSAR).
CRS-30
Medicaid Spending in Pennsylvania
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 19.6% of state
budgets for the United States as a whole in 2001.
In Pennsylvania, Medicaid spending is the largest single category of federal and
state spending. Of the state’s $40.7 billion budget in 2001, federal and state
Medicaid spending represented 28% – more than 1 of every 4 dollars. Federal and
state spending for Medicaid more than doubled as a proportion of the state’s budget
from 1990 to 2001, now outranking spending for elementary, secondary and higher
education, and public assistance combined (Table 6).
State spending for Medicaid services in Pennsylvania contributed from state
funds only (excluding federal funds)38 also increased during the 1990s. As a percent
of spending for all categories of state spending, state Medicaid spending increased
from 8.1% in 1990 to 19% in 2001 – almost 1 of every 5 dollars (Table 7).
38 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 Pennsylvania was
53.62%.
CRS-31
Table 6. Share of State Spending by Category, Pennsylvania
and the United States,1990-2001
Pennsylvania
All states
Expenditure category
1990
1995
2000
2001
2001
Total expenditures
$21,824
$30,753
$38,426
$40,694
$1,024,439
(in millions)
Medicaid
12.2%
25.5%
27.9%
28.3%
19.6%
Elementary and secondary
22.6%
20.2%
18.9%
18.8%
22.2%
education
Higher education
6.8%
6.1%
5.2%
5.4%
11.3%
Public assistance
5.3%
4.7%
2.8%
2.4%
2.2%
Corrections
1.7%
3.3%
3.9%
3.9%
3.7%
Transportation
12.0%
10.1%
10.0%
10.9%
8.9%
All other expenses
39.3%
30.1%
31.4%
30.3%
32.1%
Source: CRS calculations based on data from the National Association of State Budget Officers (NASBO), State
Expenditure Reports for 1992, 1997 and 2001. Data reported are for state fiscal years. Percentages may not
sum to 100% due to rounding.
Table 7. State Spending for Medicaid as a Percent of Total State
Spending, Pennsylvania and the United States, 1990-2001
Pennsylvania
All states
State spending
1990
1995
2000
2001
2001
Total state spending
$16,706
$22,026
$27,402
$28,694
$760,419
(in millions)a
State Medicaid spending
$1,350
$3,586
$5,055
$5,441
$85,141
(millions)b
State Medicaid spending as a
8.1%
16.3%
18.4%
19.0%
11.2%
percent of total state
spending
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. Includes intergovernmental transfers of
$287 million in 1995; $997 million in 2001; and $1,044 million in 2001. Intergovernmental transfers
were 8% of total state funding for Medicaid in 1995; 19.7% in 2000; and 19.2% in 2001.
Intergovernmental transfers are transfers of funds from local government entities (counties or cities)
to state government. Pennsylvania requires a 10% local match for Medicaid nursing home residents.
CRS-32
Medicaid Long-Term Care Spending in Pennsylvania39
Long-term care spending represented 47% of all federal and state Medicaid
spending in Pennsylvania in FY2001,40 declining slightly from 51% in FY1990.
(Table 8). Institutional care dominates long-term care spending and is a significant
share of all Medicaid spending. However, over the period FY1990-FY2001,
institutional care spending (including care in nursing homes and ICFs/MR) decreased
slightly as a share of total long-
term care spending, while spending
Medicaid long-term care financing in
for home and community-based
Pennsylvania at a glance:
services increased slightly over the
period. According to state
Medicaid long-term care spending in
Pennsylvania was $5.1 billion in FY2001 and
officials, these trends are due to a
represented 47% of all Medicaid spending in
number of factors implemented at
FY2001.
varying times during the 1990s.
These include implementation of
Spending for nursing homes represented more
the Provider Participation Review
than one-third of total Medicaid spending in
FY2001.
process for nursing homes which
participate as Medicaid providers;
Spending rate for nursing home care outpaced
statewide implementation of the
the state’s total Medicaid spending rate from
PDA waiver for persons aged 60
FY1990-FY2001 (196.7% compared to 182.3%).
and older; implementation of the
Spending for nursing home care increased as a
state-funded Bridge Program for
share of long-term care spending from 63% to
persons who do not meet Medicaid
72% from FY1990-FY2001. At the same time,
financial eligibility requirements;
spending for institutions for persons with mental
significant use of Medicaid’s
retardation decreased from 29% to 9.5%.
Section 1915(c) home and
Less than 1 of every 5 Medicaid dollars spent on
community-based waiver services
long-term care is for home and community-based
for persons with mental
services. However, there has a been a slow but
retardation; and closure of large
steady increase in spending for these services,
state institutions for persons with
primarily due to use of Section 1915(c) waiver
services.
m e n t a l r e t a r d a t i o n a n d
developmental disabilities.
The prominence of long-term care spending as a share of Medicaid is chiefly
attributed to spending for institutional care – nursing homes and ICFs/MR. In
FY2001, 38%, or $4.2 billion, of all Medicaid spending ($10.9 billion) was for care
in institutions. However, by far, most institutional care spending was for nursing
homes – $3.7 billion, almost 34% of all Medicaid spending (Table 9), and 72% of
all Medicaid long-term care spending (Table 8).
Although care in institutions still dominates Medicaid long-term care spending,
it has declined as a percent of long-term care spending from FY1990 to FY2001.
Institutional care represented 92.2% of total long-term care spending in FY1990,
39 This section discusses total Medicaid spending, both federal and state.
40 Total Medicaid spending using NASBO data differ from data shown in this table due to
differences in data collection methods.
CRS-33
declining to 81.6% in FY2001 (Figure 3 and Table 8). The decrease is attributed
solely to the spending decline for ICFs/MR care. Spending for care in ICFs/MR
decreased by almost 15% from FY1990 to FY2001 (in constant 2001 dollars), while
spending for nursing homes increased by almost 200% (Table 9 and Figure 3).
Moreover, spending for nursing home care outpaced total Medicaid spending which
increased by 182% (Table 9).
Table 8. Medicaid Long-Term Care Spending In Pennsylvania,
FY1990-FY2001
FY1990
FY1995
FY2000
FY2001
Long-term care spending as a % of Medicaid
51.0%
42.1%
49.1%
47.0%
spending
Institutional care spending as % of long-term
92.2%
88.6%
84.7%
81.6%
care spending
Nursing home spending as a % of long-term
63.2%
71.5%
74.9%
72.0%
care spending
ICFs/MR* spending as a % of long-term care
29.0%
17.1%
9.8%
9.5%
spending
Total home and community-based services
7.8%
11.4%
15.3%
18.4%
spending as a % of long-term care spending
HCBS waivers spending as a % of long-term
6.1%
9.0%
14.2%
17.2%
care spending
Source: CRS calculations based on CMS/HCFA 64 data provided by The Medstat Group, Inc. For
2000 and 2001, Burwell, Brian et al. Medicaid Long-Term Care Expenditures in FY2001, May 10,
2002. For 1995, Burwell, Brian. Medicaid Long-Term Care Expenditures in FY2000, May 7, 2001.
For 1990, Burwell, Brian. Medicaid Expenditures for FY1991. Systemetrics/McGraw-Hill Healthcare
Management Group, Jan. 10, 1992. (Hereafter cited as Burwell, Medicaid Expenditures FY1991-
FY2001.) 1990 total Medicaid spending, based on HCFA 64 data provided by Urban Institute,
Washington, (Hereafter cited as Burwell, Medicaid Expenditures FY1991-FY2001. Percentages may
not sum to 100% due to rounding.)
*Intermediate care facilities for the mentally retarded.
CRS-34
Figure 3. Institutional and Home and Community-Based Services as
a Percent of Medicaid Long-Term Care Spending in Pennsylvania,
1990-2001
100.0%
90.0%
80.0%
$1,425.3 million
$2,587.2 million
$4,170.2 million
70.0%
60.0%
50.0%
40.0%
30.0%
$332.5 million
$943.4 mil ion
20.0%
$120.6 million
10.0%
0.0%
1990
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
Institutional Care (Nursing Home and ICFs/MR)
Home and Community-Based Services (Home Health and HCBS Waivers)
Source: CRS calculations based on Burwell, Medicaid Expenditures FY1991-FY2001, 1990 total
Medicaid spending, based on HCFA 64 data provided by Urban Institute, Washington, D.C.
Table 9. Medicaid Spending in Pennsylvania, Total Spending
and Long-Term Care Spending, by Category, and Percent
Change, FY1990-FY2001 in Constant 2001 Dollars
(dollars in millions)
Percent change
FY1990-FY2001
(in constant 2001
Spending category
FY1990
FY1995
FY2000
FY2001
dollars)
Total medicaid
$3,033.5
$6,936.9
$10,322.2
$10,886.9
182.3%
Total long term care
$1,545.9
$2,919.6
$5,073.3
$5,113.6
160.2%
Total institutional care
$1,425.3
$2,587.2
$4,296.5
$4,170.2
130.1%
Nursing homes
$976.6
$2,087.6
$3,799.6
$3,684.0
196.7%
ICFs/MR
$448.7
$499.6
$496.9
$486.1
-14.8%
Total home and community-
$120.6
$332.5
$776.8
$943.4
515.5%
based services
Home health
$25.5
$69.3
$57.6
$64.7
99.4%
Personal care
$0.0
$0.0
$0.0
$0.0
0.0%
HCBS waivers
$95.0
$263.2
$719.2
$878.7
627.3%
Source: CRS calculations based on Burwell, Medicaid Expenditures FY1991-FY2001. 1990 total Medicaid spending,
based on HCFA 64 data provided by Urban Institute, Washington, D.C.
CRS-35
Figure 4. Medicaid Long-Term Care Spending by Category
in Pennsylvania, FY1990-FY2001
(in constant 2001 dollars)
$5.5
$5.0
$4.5
$4.0
$3.5
$3.0
$2.5
$2.0
Billions $1.5
$1.0
$0.5
$0.0
1990
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
Nursing Home Services
ICFs-MR
Home Health
HCBS Waivers
Source: CRS calculations based on Burwell, Medicaid Expenditures FY1991-FY2001, 1990 total
Medicaid spending, based on HCFA 64 data provided by Urban Institute, Washington, D.C.
Figures 5a and 5b depict changes in long-term care spending patterns from
FY1990 to FY2001. In FY1990, 29% of Medicaid long-term care spending was
devoted to care for persons with mental retardation in ICFs/MR, decreasing
dramatically to 9.5% in FY2001. At the same time, nursing home spending increased
from 63.2% in FY1990 to 72% in FY2001.
CRS-36
Figure 5a. Medicaid Long-Term Care Spending in Pennsylvania by
Category, FY1990
Total Medicaid LTC Spending, $1.546 bil ion
ICFs/MR
29.0%
Home Health
1.7%
HCBS
HCBS Waivers
7.8%
6.1%
Nursing Home
63.2%
Source: CRS calculations based on Burwell, Medicaid Expenditures FY1991-FY2001.
Figure 5b. Medicaid Long-Term Care Spending in Pennsylvania by
Category, FY2001
Total Medicaid LTC Spending, $5.114 billion
ICFs /MR
9.5%
Hom e Health
1.3%
HCBS
18.4%
HCBS Waivers
Nursing Home
17.2%
72.0%
Source: CRS calculations based on Burwell, Medicaid Expenditures FY1991-FY2001.
Although home and community-based services represent a small portion of
long-term care spending – less than 1 of every 5 dollars – the share of spending on
these services has increased in a slow but steady pattern over the period. Spending
on home and community-based services more than doubled as a share of long-term
care spending, increasing from 7.8% in FY1990 to 18.4% in FY2001 (Figures 5a
and 5b). This is primarily due to expansion of the various Section 1915(c) waivers
for persons with disabilities in Pennsylvania. Waiver spending increased from 6.1%
of long-term care spending to 17.2% in FY2001.
Increased funding for waiver services, however, does not affect all populations
equally. By far the majority of Medicaid waiver spending is for persons with mental
CRS-37
retardation and developmental disabilities. In FY2001, 88.6% of waiver spending
was for these persons, with less than 12% devoted to spending on the elderly and
other disability groups (Figure 6).
Figure 6. Medicaid Home and Community-Based Services Waiver
Spending by Target Population in Pennsylvania,
FY2001
Total Medicaid HCBS Waiver Spending, $878.7 million
Aged and Disabled
Waivers
10.7%
Other Waivers
MR/DD Waivers
0.7%
88.6%
Source: CRS calculations based on Medicaid HCBS Waiver Expenditures, FY1995 throughFY2001
by Steve Eiken and Brian Burwell, The Medstat Group, Inc., May 13, 2002.
State Spending on Home and Community-Based Services for
the Elderly
Medicaid funding represents only part of total funding for home and
community-based services – Pennsylvania devotes significant funding from state
sources. A long-standing source of support for services to persons aged 60 and older
is the Pennsylvania Lottery. The Lottery was established by the General Assembly
in 1971 with the primary purpose of generating funds to benefit older residents. It
is the only state lottery in the nation that dedicates all of its proceeds to programs for
older persons. Since 1972, it has contributed more than $12 billion to a number of
programs, including pharmaceutical benefits, home and community-based services,
tax rebate programs, transportation, and a variety of services supported by the 52 area
agencies on aging.41 Another significant source of support for home and community-
base services used by Pennsylvania is the state’s share of the tobacco settlement
41 Pennsylvania Department of Aging, Benefits and Rights for Older Pennsylvanians,Dec.
2001.
CRS-38
funds.42 While a large portion of both lottery and tobacco settlement funds is devoted
to the state’s pharmaceutical benefit program for the elderly, these sources also play
a significant role in funding home and community-based services.
The following table shows the Pennsylvania Department of Aging’s budget for
FY2001-2002 by source. State lottery and tobacco settlement funds are almost 80%
of the total budget, with almost 30% of the total budgeted for home and community-
based services. Federal funds (primarily Older Americans Act funds) represent only
about 14% of the total budget. The total shown does not include funding for the
Medicaid Section 1915(c) waiver services for the elderly, which in FY2001
amounted to over $260 million (these funds do not appear as part of the budget for
the Department of Aging, but rather are in the Department of Public Welfare).
Table 10. Pennsylvania Department of Aging (PDA) Budget,
FY2001-FY2002, by Source of Funds
Amount
Source and use of funds
(in millions)
Percent
Total PDA budget, FY2001-FY2002
$775.8
100.0
Lottery, total
$562.1
72.5
Home and community-based services administered by PDA*
203.1
26.2
Pharmaceutical program
359.0
46.3
Tobacco settlement, total
56.9
7.3
Home and community-base services administered by PDA
29.2
3.8
Pharmaceutical program
27.6
3.6
Federal funds**
109.0
14.1
Other
47.8
6.2
Source: Pennsylvania Department of Aging, Budgeted Fiscal Years, 2001/2002 and 2002/2003,
unpublished document.
*Does not include funding for Medicaid Section 1915(c) waiver funds for the elderly which is
included in the budget for the Department of Public Welfare.
**Includes Older Americans Act, and Medicaid funds for case management services.
42 For information on the tobacco settlement agreement, see CRS Report RL30058, Tobacco
Master Settlement Agreement (1998): Overview, Implementation by States, and
Congressional Issues, by Stephen Redhead.
CRS-39
Medicaid and State Spending on Services for Persons with
Mental Retardation and Developmental Disabilities
Federal and state spending for persons with mental retardation and
developmental disabilities was almost $1.6 billion in 2000 (Table 11). This
represented more than a 50% increase (in constant 2000 dollars) since 1990. Of total
2000 spending, a significant share – 52% – was contributed by state sources.
As discussed earlier, Pennsylvania has devoted considerable efforts to increasing
services in home and community-based settings to persons with mental retardation.
In 2000, almost three quarters of total spending was for home and community-based
services – $1.1 billion. Federal funding under the Medicaid Section 1915(c) waiver
program is an important component of spending for these services, representing
34.3%.
Of total institutional and home and community-based services spending in 2000,
22.4% was from federal waiver funds in 2000. This spending increased by almost
418% (in constant 2000 dollars) since 1990. The state has used the waiver to
dramatically increase federal Medicaid reimbursement for home and community-
based services, while at the same time it has decreased federal spending for
institutional services in constant dollars. Federal spending for institutional services
in Pennsylvania decreased by over 18% from 1990 to 2000 (in constant 2000 dollars).
Table 11. Federal and State Spending for Institutional and
Community Services for Persons with Mental
Retardation/Development Disabilities in Pennsylvania,
1990 and 2000
Percent
Percent of
change in
FY2000
constant 2000
1990
2000
total
dollars
Services
$ 837.4
$ 1,586.3
100%
52.6%
Congregate/institutional services
398.0
442.7
27.9%
-10.4%
Federal funds
220.0
223.2
14.1%
-18.2%
State funds
178.0
219.5
13.8%
-0.7%
Home and community-based
services
439.3
1,143.6
72.1%
109.7%
Federal funds
107.6
544.0
34.3%
307.3%
ICFs/MR funds*
(21.8)
(47.8)
3.0%
76.8%
HCBS waiver**
(55.3)
(355.5)
22.4%
417.9%
Title XX/SSBG funds***
(18.0)
(16.2)
1.0%
-27.6%
Other
(12.5)
(124.5)
7.8%
699.9%
State funds
331.7
599.6
37.8%
45.7%
Source: CRS calculations based on data presented in The State of the States in Developmental
Disabilities, by David Braddock et al., 1998. American Association on Mental Retardation,
Washington, p. 404 (for 1990 data). Unpublished data furnished by Richard Hemp, University of
Colorado (for 2000 data).
*Intermediate care facilities for the mentally retarded. These funds are used for community services.
**Home and community-based waiver (Section 1915(c)) of the Medicaid statute.
***Social Services Block Grant (Title XX of the Social Security Act).
CRS-40
Selected Issues in Financing and Delivery of Long-
Term Care Services in Pennsylvania
Pennsylvania officials and stakeholders have identified issues that pervade the
state’s long-term care system in a series of reports over the years. Prominent among
these is a report issued by a working group of the Pennsylvania Intra-Governmental
Council on Long Term Care in March 2002.43 The following discussion highlights
selected issues identified in that report and other state reports, as well as issues that
surfaced in CRS interviews with state officials, providers, and consumers.
Institutional Bias. A recurring theme in discussions of long-term care with
state officials is their view that the federal financing system guarantees heavy use of
institutional care. This is largely due to the fact that nursing facility care is an
entitlement under Medicaid for persons needing such care and who meet its
eligibility criteria. Financing of institutional care is a federal mandate; home and
community-based care is not. Although states may choose to provide home and
community-based services under various Medicaid options, state officials indicate
that state funding constraints and the provider system that was created as a result of
the institutional entitlement make it difficult to reorient the system. Pennsylvania
officials indicated that they want to move to a policy of expanding home and
community-based services, and that consumers should be given clear choices
regarding their options, with adequate supports to stay at home and in the
community.
Officials noted that while the rhetoric regarding changing the institutional bias
has intensified over the years, actually accomplishing this objective is difficult and
moving slowly. The impetus for heavy reliance on institutional care is built into the
incentive structure for providers resulting in funding disparities between institutional
care and home and community-based care. State officials and stakeholders indicated
that the institutional bias has created a provider culture that is counter to the desires
of the population needing long-term care services. This is exemplified in a number
of ways. Incentives in the service system are built around referral to nursing homes.
For example, hospital personnel are more likely to discharge persons needing long-
term care services to nursing facilities, rather than to home and community-based
settings which are seen by discharge planners as riskier choices for some people.
State officials noted that the risks of referring clients to nursing homes are somewhat
easier to manage given the 24-hour care provided. Home and community-based
providers have to take on greater risk because of complexities of planning for 24 –
hour care. Because home care options often do not involve a single service, they are
seen by many as more complicated than simply a referral to a nursing home unless
there are sufficient informal care providers to assist.
Once a person is referred and served in a nursing home, the likelihood of staying
in the institutional setting increases as more time is spent there. State officials
indicated that most persons become eligible for Medicaid within 6 months to a year
43 Pennsylvania Intra-Governmental Council on Long Term Care, Home and Community-
Based Services Barriers Elimination Work Group, Mar. 2002.
CRS-41
after entering a nursing home. And, once a person has resided in a nursing home for
2 or 3 months, it is difficult to discharge the person to community care. Clearly,
some people need care that can only be provided in an institution, for example, those
persons who have multiple, complex needs, weak or non-existent informal supports,
and who lack appropriate housing arrangements. The challenge to the long-term
care system is to respond with services that are appropriate to needs, and that would
use institutional care appropriately until a person can safely be cared for at home, and
to arrange a package of home and community-based services that will prevent the
person from entering or reentering an institution.
State officials state that the institutional bias is built into the federal
requirements for eligibility for the Section 1915(c) home and community-based
wavier program – that is, persons are only eligible for the waiver services if they
meet institutional functional eligibility criteria. State officials representing non-
elderly persons with disabilities indicated that using the “nursing home eligible”
criteria perpetuates a medical/institutional model of care, not appropriate for younger
persons who will need support throughout their lifetimes.
According to state officials, one method to ameliorate the institutional bias is
to control or downsize institutional capacity. The primary method used by
Pennsylvania to control institutional capacity is through approval of Medicaid beds
through the PRP process (described earlier) and through limitation on
reimbursements. This has had some impact on the supply of beds. Controlling the
supply of state institutions for the mentally retarded differs somewhat from that for
nursing homes. As pointed out earlier, the state has closed a number of care facilities
for persons with mental retardation in the past several decades, and could do so
because these facilities were operated by state government. Virtually all nursing
homes in the state are either privately owned (75% are for-profit and 25% are non-
profit)44 and therefore controlling or downsizing institutional capacity is not as direct
as in the case of state-operated facilities.
State officials indicated that the system should be changed so that nursing
homes are an exception rather than the rule. Home and community-based care
should be considered first, and then, if services are judged to be inappropriate or
unavailable, the alternative would be an institutional placement. In addition, state
officials note the need to have in place methods to divert people from nursing homes
who would be in danger of spending down their income and assets to establish
Medicaid eligibility.
Categorical Approach to Home and Community-Based Services.
State officials indicated that while the waiver programs have expanded opportunities
for many people with disabilities to receive services they would not have absent the
waiver, the waivers have created another set of categorical requirements.
Pennsylvania has eleven waivers in all, each targeting certain groups with certain
types of disabilities. In addition, there are six other state-funded programs for which
consumers might qualify. Each program is identified as a discrete, distinct program
resulting in a silo approach to service provision. The procedures of locating the
44 American Health Care Association, Nursing Facility Sourcebook, p. 134.
CRS-42
appropriate waiver or other service program and the administering agency, and trying
to fit needs into the prescribed waiver requirements, can be burdensome on clients
as well as providers.
Service packages, eligibility requirements, and financial caps on amounts of
services vary among the programs. In addition, for the federal waiver programs, a
person does not become eligible until his or her condition has deteriorated to the
“level of care” provided by an institution. Some people may not meet the narrow
categories of eligibility on the basis of disability that define eligibility for waivers.
State officials and stakeholders recommended that services should be promoted
without identifying different waiver programs that cover different services for
different populations. In addition, they recommended that there be more
comparability across waivers in order to prevent a silo approach and that the scope
and eligibility for waivers should be expanded.
Medicaid Eligibility Requirements and Access to Services. A number
of issues identified by state officials relate to Medicaid eligibility for home and
community-based services.
Medicaid Eligibility Income and Resource Limits. Persons needing long-term
care services paid for by Medicaid must have countable income and resource limits
established by the state within federal requirements. States may allow persons with
income up to 300% of the federal SSI level to become eligible for Section 1915(c)
home and community-based waiver services (in 2003, $1,656/month for an
individual); this is the level used by Pennsylvania for the waiver programs. In
addition, people may qualify if their assets do not exceed $2,000 for an individual
and $3,000 for a couple.45 While these requirements limit the number of people who
may become eligible for Medicaid, they also act as a barrier to many persons in need
of long-term care who live at home. For example, state officials indicated that people
in need of home and community-based care who live in their own homes do not feel
comfortable depleting almost all of their liquid assets that may be needed for
household expenses and emergencies. (Medicaid law allows states to use more liberal
standards under Section 1902(r)(2) of the Social Security Act; however, few states
have employed this option. States may permit persons with higher income and
resources to qualify for Medicaid, but this would expand eligibility groups and
therefore Medicaid costs.)
Pennsylvania, through its state-funded Bridge and Options Programs, has
addressed some of these Medicaid financial eligibility issues. These programs may
serve as models for other states that have the financial capacity to expand the pool
of eligibles. They may also serve as examples for any federal initiatives that may be
proposed to expand eligibility. (More liberal income and resources levels are used
under another federal Medicaid option for the “working disabled,” established by the
Ticket to Work and Work Incentives Act of 1999, P.L. 106-170. Under that option,
45 Certain items are excluded, such as an individual’s home; up to $2,000 of household
goods and personal effects; life insurance policies with a face value of $1,500 or less; an
automobile with value up to $4,500; and burial funds up to $1,500, among other things.
CRS-43
states may choose to apply more liberal income and resources standards for persons
with disabilities who are working. Medicaid coverage is used as an incentive to
retain these persons in the workforce. Under the law, these persons may “buy-into”
Medicaid through various forms of cost-sharing and premiums based on income.)46
The Options Program allows people with income up to 300% of the federal
poverty level (up to $2,245/month for an individual in 2003) to become eligible for
state-funded home and community-based services, with cost-sharing applied on a
sliding fee-scale basis. There is no resource test to qualify. On the other hand, the
Bridge Program allows people with resources up to $40,000 to access state-funded
home and community-based services. Cost sharing of 50% toward the cost of
services is applied for a period of up to 12 months until a person spends down
resources to the Medicaid eligibility level of $2,000. This allows people needing
long-term care to receive services, and gradually become eligible for Medicaid, rather
than having to wait to receive services until all countable resources are depleted to
the $2,000 level.
Length of time to process Medicaid financial and functional eligibility for home
and community-based services. Under federal law and regulation, the state Medicaid
agency must establish time standards for determining eligibility and inform
applicants what they are. States must make an eligibility determination for persons
who apply for benefits on the basis of disability within 90 days of the date of
application. State officials estimate that it can take from 3 to 4 months or more from
the point of identification of the need for home and community-based services to the
point of actually receiving Medicaid services. Home and community-based providers
must rely on county assistance offices to determine financial eligibility on behalf of
clients they wish to serve, and providers cannot take the risk of serving persons
without eligibility verification. In contrast, officials pointed out that when a referral
for nursing homes is made, nursing homes can often assume the risk that the person
will become eligible for Medicaid, and spend down within a predictable period of
time, usually 6 months to a year. In addition, nursing homes usually have the
administrative staff to assist applicants with the process of completing financial
eligibility forms for Medicaid expeditiously.
One of the ways to address the risk faced by home and community-based
providers would be to allow providers to make prospective clients provisionally
eligible for waiver services. However, the Medicaid statute does not provide for
presumptive eligibility for home and community-based services. In recognition of
these issues, the Center for Medicare and Medicaid Services (CMS) has been
cooperating with several states to establish a programmatic equivalent of presumptive
eligibility for Section 1915(c) waiver services. A few states have implemented a
system whereby providers may establish a preliminary plan of care for persons who
meet the functional eligibility criteria, provide some services under the plan of care
46 For further information, see CRS Report RL31157, Ticket to Work and Work Incentives
Improvement Act of 1999, by Jennifer Hess, et. al.,
CRS-44
using funds other than Medicaid, and then certify the person for Medicaid wavier
services once financial eligibility is established.47
Equity of Home and Community-Based Service Access Across
Populations in Need of Care. Issues of equity of access to Section 1915(c)
waiver services cross a number of dimensions. In Pennsylvania, the number of
approved slots for persons with mental retardation and developmental disabilities
exceed those for persons with other disabilities. Of the total number of approved
slots in the state for FY1998-FY1999 – 17,208, about 63% were for persons with
mental retardation, with the balance for other persons with disabilities.48 Moreover,
there are waiting lists for the waiver services for both persons with mental retardation
and the elderly. State officials and stakeholders have indicated that needs
assessments should be conducted to achieve more proportional and geographic equity
across populations.49
Another dimension of equity relates to comparability of service packages within
waivers and application of different cost caps for different waivers. Some waivers
are capped at 80% of the cost of nursing home care50 while others are capped at
100%. While states have the discretion to decide where to place the cap for each
service, this does lead to differences in service levels across populations. In addition,
some cost caps are applied to each individual, and some are applied on an aggregate
basis across the state which allows persons with high cost needs to be served. Of the
10 waivers discussed in this report, seven are applied on an aggregate basis and three
are applied on an individual basis. In this regard, advocates in Pennsylvania are
requesting that the state shift from individual cost caps to aggregate cost caps for all
waivers.51 The state is investigating this option.
State officials and stakeholders have recommended that the waiver programs
should be evaluated to determine if service packages should be made more uniform
throughout the state, to eliminate gaps in services for different eligibility groups.52
Waiting Lists for Home and Community-based Care for Persons
with Mental Retardation and Developmental Disabilities. Waiting lists for
services for persons with mental retardation and developmental disabilities have
drawn attention across many states, including Pennsylvania. Despite the sizable
amount of funding devoted to services for persons with mental retardation in
Pennsylvania, waiting lists for services have been a persistent problem. A 1997
survey by Temple University revealed that over 14,000 persons were on waiting lists
for services. Of those, 74% needed services in more than 1 year, 23% needed
47 Personal communication with CMS staff, Oct. 24, 2002.
48 Home and Community-based Services Barriers Elimination Work Group, p. 25 (see
footnote 46 of that document).
49 Home and Community-based Services Barriers Elimination Work Group, p. 25.
50 This applies to the PDA waiver and excludes case management and administration.
51 Home and Community-Based Services Barriers Elimination Work Group, p. 27.
52 Home and Community-Based Services Barriers Elimination Work Group, p.p. 25-27.
CRS-45
services within 1 year, and less than 3% needed services on an emergency basis. The
vast majority (78%) of persons on the waiting lists live in their own home or a
relative’s home. One of the chief factors involved in planning for persons on waiting
lists is the capacity of caregivers. Many of those in critical need of services had
either an aging or ill caregiver. Of all persons on the waiting list, 38% had a
caregiver aged 60 and over.
Former Governor Tom Ridge requested that a plan be developed to address the
waiting list issue. A Planning Advisory Group to the Office of Mental Retardation
recommended a series of steps to be taken by the state to reduce waiting lists and
expand community-based services. (A Long-Term plan to Address the Waiting List
for Mental Retardation Services in Pennsylvania, October 1999.)
Long-Term Care Staffing. Across the country, states are faced with the
challenge of finding sufficient numbers of qualified staff for long-term care. This is
a system-wide problem. The Pennsylvania Intra-Governmental Council on Long-
Term Care commissioned a study to examine the issues affecting the long-term care
workforce and to make recommendations to improve the current staffing shortages.
In Pennsylvania, nearly 70% of the state’s long-term care providers reported
significant problems with the recruitment or retention of frontline workers, and 35%
of providers reported that the worker shortage was extreme.
Finding direct care workers (defined as home health aides, nurse aides, personal
attendants and personal care aides) has become increasingly difficult in Pennsylvania.
A survey of the state’s 3,400 providers revealed that in the fall of 2000 an estimated
94,150 persons were employed in frontline positions; for this same time period an
additional 11,300 positions went unfilled. The report indicated that nursing homes
accounted for 46% of the positions and 53% of the openings; larger personal care
homes accounted for 23% of the positions and 16% of the openings. Home health
and home care agencies represented 20% of the positions and 23% of the openings.53
From interviews with front-line workers across the state, the study was able to
identify some of the industry’s major problems in the recruitment and retention of
qualified staff. Most often mentioned were inadequate compensation (the average
hourly wage of a frontline worker was $7.29 in 2001), a lack of benefits, and a lack
of respect for the contribution that frontline workers make to long-term care. In
addition, the focus groups identified transportation issues for home health workers,
high patient-to-staff ratios, and the demanding nature of the work (both physically
and emotionally) as challenges to attracting new workers and retaining current
workers.
The study made a variety of recommendations to the state and the long-term care
industry to help address the workforce shortage, including most importantly
improvements in pay scales and benefits. The study also made a number of
53 Pennsylvania Intra-Governmental Council on Long-Term Care, Pennsylvania’s Frontline
Workers in Long-Term Care, Report to the Pennsylvania Intra-Governmental Council on
Long-Term Care, Feb. 2001.
CRS-46
recommendations intended to professionalize the field and improve recruitment
strategies.
Nursing home and home care agencies compete for the same staff, and these
providers compete for any new funding that might be available for long-term care.
State officials indicate that when new funding is available for long-term care, nursing
home lobbyists make the case that they need the money to improve quality of care.
State officials urged that if the federal government is serious about promoting home
and community-based care, then more incentives should be given to states to support
this care.
Fragmentation of Responsibility for Long- Term Care. Many states
confront issues of fragmentation of responsibilities for administration of long-term
care programs. There is general recognition among state officials and stakeholders
across many states that coordination of long-term care services is difficult to achieve.
This is due to many factors, including:
! The long-term care system spans many services and benefits –
skilled nursing facilities, housing, a wide range of home care and
community-based services, cash payments, adaptive technology and
rehabilitation, among others. Generally, no single agency or
department in state governments is responsible for this wide array of
services and benefits.
! Eligibility for public long-term care is premised on both financial
and functional requirements, which in many cases are handled by
separate entities.
! Requirements for enforcement of quality of care and payment to
providers is the responsibility of separate entities in many cases.
In Pennsylvania, three distinct state departments are responsible for various
components of the long-term care system – the Department of Public Welfare, the
Department of Aging, and the Department of Health (see Figure 2). Responsibility
for management, reimbursement policy, coordination of services, administration of
facility-based and home and community-based care, and quality of care are spread
among these departments. In addition, fragmentation is present on the sub-state
level. County-based agencies that are operated by the state are responsible for
financial eligibility for nursing home and home and community-based services, while
area agencies on aging that are locally administered are responsible for functional
eligibility determinations for the elderly and disabled under contract with the state.
Administrative fragmentation and difficulties in coordination of services have been
documented in various reviews conducted by the state.54
The state has separated responsibility for payment of providers from
responsibility for oversight on quality of care, recognizing that there might be
conflicts of interest in having the payor agency also be an enforcer of quality
standards. In addition, responsibility for oversight of quality of care for various
54 Pennsylvania Intra-Governmental Council on Long-Term Care, Long-Term Care for the
21st Century: A Time for Change, Sept. 9, 1996, p. 22.
CRS-47
services within the long-term care system resides in different agencies. For example,
responsibility for licensure of personal care homes resides with the Department of
Public Welfare while oversight of quality of care in nursing homes resides with the
Department of Health.
While there is no right or wrong way to organize the various responsibilities,
issues of coordination continue to be problematic for Pennsylvania according to state
officials. The state has taken steps to resolve some of these issues. The Intra-
governmental Council of Long-Term Care was established to address issues around
policy coordination among the various departments and through the long-term care
system. In addition, some service coordination problems around managing services
for clients have been addressed by moving toward a single point of entry for
functional eligibility determination through area agencies on aging. These agencies
perform functional eligibility determination for both the elderly and younger persons
with disabilities for nursing facilities as well as for home and community-based care.
CRS-48
Appendix 1. Major Home and Community-Based Long-Term Care Programs for the Elderly and Persons with
Disabilities in Pennsylvania
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)a
oversight
oversight
PDA Waiver
Persons
Nursing
Area agencies
300% of the
DPW/OIM/
Assessment; case
9,309 persons
$35,000
PDA/DPW
OMA/DPW
(1915(c))
aged 60
facility (NF)
on aging
federal SSI
County
management;
served in State
individual cost
and over
level of care
under
level ($1,656
assistance
attendant care;
Fiscal Year
cap (equivalent
Statewide
contract with
in 2003)/
offices
companion;
(SFY)2001-2002
to 80% of the
DPW
$2,000 for an
counseling;
nursing facility
Initiated
individual
environmental
10,049 slots
rate; excludes
statewide in
modifications;
approved in SFY
cost of
1999
extended physical
2002-2003
administration
services; home-
and case
delivered meals; home
management).
health; home support;
Average cost
adult day care
in SFY2001-
services; personal
2002, $8,136
care; personal
per person
emergency response
system; respite care;
specialized medical
equipment and
supplies; and
transportation
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-49
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)a
oversight
oversight
Independence
Persons
Persons with
Area agencies
300% of
DPW/OIM/
Service coordination;
452 persons served
$42,116
DPW/OSP
DPW/OIM
Waiver
age 18 and
substantial
on aging
the
County
assistance with daily
as of 12/02
aggregate
(1915(c)
over with
functional
under
federal
assistance
living activities
cost cap in
physical
limitations in
contract with
SSI level
offices
($13.64 to $18.38 per
402 slots as of
SFY2001-2002
Statewide
disabilities
at least three of
DPW
($1,656 in
hour); respite care
12/02
the following
2003)/
($13.64 to $18.38 per
Initiated in
areas:
$2,000
hour); up to $10,000
Waiver amendment
1997
self-care;
for an
in environmental
to increase slots is
understanding
individual
accessibility
in process as of
and use of
adaptions; up to
December 2002.
language;
$10,000 in specialized
learning
medical equipment
self-direction;
per consumer per
capacity for
lifetime; PERS;
independent
physical, occupational
living; and
and speech therapies;
mobility
visiting nurse;
community
integration (up to
$50/hour); educational
services up to
$120/day;
transportation
generally up to
$215/month
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-50
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)a
oversight
oversight
Michael
Technology
Must be
Physician
300% of the
DPW/OIM/
Private duty nursing;
57 served/136
$236,000
DPW/OIM
DPW/OIM
Dallas
dependent
dependent on
certification
federal SSI
County
case management;
slots in SFY2001-
aggregate cost
Waiver
persons of
a technologic
level
assistance
attendant care; respite
2002
cap
(1915(c))
all ages
device to
($1,656 in
offices
care; durable medical
replace a vital
2003)/
equipment; and
Annual cost
Statewide
body function
$2,000 for
nutritional
ranges from
or sustain
an
supplements
$180,000 to
Initiated in
life; must
individual
$200,000 per
1987 for
have
person. Cost cap
children;
exhausted
is based on state
expanded to
private
rate for Special
all ages in
insurance
Rehabilitation
2001
coverage
Facilities (SRFs).
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-51
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)a
oversight
oversight
Elwyn
Persons
Must be NF
Area
300% of the
Dept of
Personal care;
39 persons/45
$23,000
DPW/OIM
DPW/OIM
Waiver
aged 40
eligible and
agencies on
federal SSI
Public
counseling; home
slots in SFY2001-
individual
(1915(c))
and over
reside in
aging under
level ($1,656
Welfare/
health; therapeutic
2002
cost cap
who are
Valley View
contract
in 2003)/
Office of
social and recreation
Delaware
deaf, blind,
Assisted
with Dept of
$2,000 for an
Income
services; special
County only
or
Living
Public
individual
Maintenance/
medical equipment
deaf/blind
facility
Welfare
County
and supplies; and
who live in
assistance
transportation
Delaware
offices
County
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-52
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)
oversight
oversight
AIDS waiver
Persons aged
May not be
Physician
300% of
DPW/OIM/
Skilled nursing; home
78 persons served/
$14,000
DPW/OIM
DPW/OIM
(1915(c))
21-64
enrolled in
the
County
health aide;
250 slots in
individual cost
with
HMOs or HI
federal
assistance
homemaker; supplies
SFY2001-2002
cap. Cost of care
Statewide
symptomatic
Organizations
SSI level
offices
and nutritional
may not exceed
HIV and
or hospice
($1,656 in
supplements not
comparable
Initiated in
AIDS
care
2003)/
covered by Medicaid;
group in hospital
1990
$2,000
nutritional
or nursing
for an
consultations by
facility.
individual
registered dietitians
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-53
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
Limits
by
Services
approved
individual)a
oversight
oversight
Commcare
Persons
Persons with TBI
Area
300% of
DPW/OIM/
Service coordination;
Three persons
$146,740
DPW/OIM
DPW/OIM
Waiver
aged 21 and
who require
agencies on
the
County
personal care; respite
served as of 12/02
aggregate cost
(1915(c))
older with
Special
aging under
federal
assistance
care prevocational;
cap
traumatic
Rehabilitative
contract
SSI level
offices
supported
98 slots SFY2002-
Statewide
brain injury
Facility (SRF)
with Dept of
($1,656 in
employment;
2003
(TBI)
level of care.
Public
2003)/
habilitation;
Initiated in
Disability must
Welfare.
$2,000
education (including
2002
result in
Other
for an
community college,
substantial
contractors
individual
university, tutoring);
functional
determine
environmental
limitation in
need for
adaptions ($20,00
three or more of
SRF care.
lifetime limit);
major life
non-medical
activities:
transportation; spec.
mobility,
medical equipment
behavior,
($10,000 lifetime
communication,
limit); chore; PERS;
self-care self-
physical, occupation,
direction,
speech therapies;
capacity for
part-time nursing;
independent
coaching; night
living and
supervision; day
cognitive
programs
capacity
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-54
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)a
oversight
oversight
Attendant
Persons
Must be
Area
300% of the
DPW/OIM/
Basic care services
1,804
$38,059
DPW/OSP
DPW/OIM
Care Waiver
aged 18-59
capable of
agencies on
federal SSI
County
such as assisting the
served/2,396 slots
aggregate cost
(1915(c))
who meet
selecting and
aging under
level ($1,656
assistance
consumer in and out
in SFY2002-2003
cap
NF level of
supervising
contract
in 2003)/
offices
of bed, wheelchair,
Statewide
care
attendants
with DPW
$2,000 for an
and/or motor vehicle;
and
individual
and assistance with
Initiated as a
managing
routine bodily
waiver in
their financial
functions such as
1994
and legal
bathing, grooming,
affairs
and eating.
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-55
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)a
oversight
oversight
Consolidated
Persons
Persons who have
County
300% of
DPW/OIM/
Respite care;
13,614 persons
$52,143
DPW/
DPW/OIM
Waiver for
with
significant
Mental
the federal
County
habilitation
served in
aggregate cost
OMR
Persons with
mental
sub-average
Health/
SSI level
assistance
(including
SFY2001-2002
cap for
Mental
retardation
intellectual
Mental
($1,656 in
offices
residential; day;
SFY2002-2003
Retardation
age 3 and
functioning; who
Retardation
2003)/
preocational;
16,491 slots for
(1915(c))
over
have significant
offices
$2,000 for
supported
SFY2002-2003
limitations in
an
employment;
Statewide
maturation,
individual
education);
learning, personal
environmental
Initiated in
independence;
accessibility
1996
who have
adaptions;
substantial
transportation; chore;
functional
private duty nursing;
limitations in three
specialized therapies;
or more areas of
and permanency
major life
planning for children
activities,
and youth
including self-
care, mobility, and
receptive and
expressive
activities; and who
experienced onset
of these conditions
before the age of
22. Also can
include persons
with autism who
meet the
prescribed criteria.
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-56
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)a
oversight
oversight
Person/
Persons
Persons with
County
300% of the
DPW/OIM/
Homemaker/chore;
6,218 persons
$21,225
DPW/
DPW/
Family
with
significant sub-
Mental
federal SSI
County
respite care;
served in SFY
individual
OMR
OMA
Directed
mental
average
Health/
level
assistance
habilitation
2001-2002
cost cap for
Waiver
retardation
intellectual
Mental
($1,635 in
offices
(residential, day,
SFY2002-2003
(1915(c))
age 3 and
functioning;
Retardation
2002)/
prevocational;
7,361 slots for
over
who have
offices
$2,000 for
supported
SFY2002-2003
Statewide
significant
an
employment);
limitations in
individual
environmental
Initiated in
maturation,
accessibility
1999
learning,
adaptions;
personal
transportation;
independence;
physical, occupational
who have
therapy; speech,
substantial
hearing, and language
functional
services;
limitations in
visual/mobility,
three of more
behavior therapy;
areas of major
visiting nurse;
life activities,
adaptive appliances
including self-
and equipment; and
care, mobility,
personal support
and receptive
and expressive
activities; and
who has
experienced
onset of these
conditions
before the age
of 22. Also can
include persons
with autism
who meet the
prescribed
criteria.
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
CRS-57
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)a
oversight
oversight
OBRA
Persons
Disabilities
Agencies
300% of
DPW/OIM/
Service coordination;
377 persons served
$129,949
DPW/OSP
DPW/OIM
Waiver
who have
attributable to
under
the federal
County
assistance with ADLs;
as of 12/01
aggregate cost
severe
cerebral palsy,
contract
SSI level
assistance
respite care;
cap
1915(c)
chronic
epilepsy or other
with
($1,656 in
offices
environmental
356 slots as of
disabilities
conditions found
DPW/OSP
2003)/
adaptations assistive
12/02
Statewide
to be closely
$2,000 for
technology/special-
related to MR,
an
ized medical
Waiver amendment
Initiated in
but excluding
individual
equipment; PERS;
to increase slots is
1991
MR or major
physical,
in process.
mental disorders.
occupational, speech,
Condition was
hearing and language
manifested prior
and behavioral
to age 22 and is
therapies; adult day
likely to continue
care; prevocational
indefinitely and
education; supported
results in
employment;
substantial
community
functional
integration;
limitations in at
transportation
least three major
life activities
(self-care;
understanding/
use of language;
learning;
mobility; self-
direction and
capacity for
independent
living.)
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-58
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)a
oversight
oversight
Long Term
Persons aged
NF level of
Multidiscipl-
300% of
DPW/OIM/
Comprehensive
2002:
Medicare
CMS and
CMS and
Care Capitated
60 and older
care
inary staff at
the
County
medical and long-term
LIFE-Pittsburgh-
capitated rate
PA DPW
PA DPW
Assistance
four sites
federal
assistance
care services provided
87 enrolled/250
based on monthly
program
SSI level
offices
chiefly in adult day
slots approved
capitated
($1,656 in
care setting. Includes
amounts adjusted
Program of all
2003)/
primary medical and
LIFE-
for a frailty factor
Inclusive Care
$2,000
nursing, physical,
Philadelphia- 97
(2002
for the Elderly
for an
speech, occupational
enrolled/250 slots
$1,876.56).
(PACE)
individual
therapies; in-home
approved
Medicaid rates
support; hospice;
negotiated with
Four sites
personal care;
LIFE-Univ. of PA.
Dept of Public
covering
outpatient MH/MR
School of Nursing,
Welfare.
portions of
services; drugs; meals
Philadelphia– 143
Philadelphia
at day health center
enrolled/250 slots
and Allegheny
and home.
approved
counties. One
PACE
Community LIFE-
program
McKeesport –
(receiving
107 enrolled/250
Medicare and
slots approved
Medicaid
capitation
payments ) and
three pre-
PACE
programs
(receiving
Medicaid
capitation
only)
One site with
permanent
provider status
Jan. 2002.
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-59
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Administr
Target
Determined
Resource
Determined
enrolled/slots
(aggregate/
ative
Financial
Program
group
Criteria
by
Limits
by
Services
approved
individual)a
oversight
oversight
Bridge
Same as
Same as PDA
Same as PDA
Income: same as
Same as
Same as PDA
200 as of April
Same as PDA
Same as
Same as
program
PDA waiver
waiver
waiver
PDA waiver.
PDA waiver
waiver
2002
waiver
PDA
PDA
(state
Resources: up
waiver
waiver
financed)
to $40,000.
Cost-sharing fee
Initiated in
of 50% applied
2002
to services for a
period up to 12
Statewide
months until
person spends
down assets to
$2,000. No
cost-sharing for
assessment,
counseling, case
management,
and protective
services.
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-60
Functional
Financial
eligibility
eligibility
No. of persons
Annual cost
Target
Determined
Income/
Determined
enrolled/slots
cap (aggregate/
Admin.
Financial
Program
group
Criteria
by
resource limits
by
Services
approved
individual)a
oversight
oversight
Options
Same as
Same as PDA
Same as PDA
Cost sharing based
Same as PDA
Same as PDA
91,000 persons
$625 per month
Same as
Same as
program
PDA
waiver
waiver
on income.
waiver
waiver. Also
served in
individual cost
PDA
PDA
(state
waiver.
Income up to
includes needs
SFY2001-
cap
waiver
waiver
financed)
Also
125% of FPL, no
assessment and
2002
includes
cost sharing.
case management
certain
Income up to
for persons aged
Statewide
services for
300% of FPL,
18-59 applying
persons
cost-sharing on a
for nursing
Initiated in
aged 18-59.
sliding fee scale
facility care;
the 1970s;
basis. Cost-sharing
mandatory
cost sharing
does not apply to
assessment for
initiated in
assessment, case
persons applying
2002.
management,
for Medicaid
home-delivered
nursing facility
meals and Family
care, and for SSI-
Caregiver Support
eligible persons,
program.
assessment for
placement in a
Resource test:
domiciliary or
none, though
personal care
persons who spend
home
down may retain
income up to
125% of FPL and
$10,000 in assets.
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-61
Functional
Financial
eligibility
eligibility
Annual
Income/
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)a
oversight
oversight
Family
Frail and
Care receiver
Area
Cost-sharing based
PDA
Assessment;
10,000 persons
Not applicable
PDA
PDA
Caregiver
disabled
60 years and
agencies on
on sliding scale;
counseling;
receive services
Support
persons
older must
aging
reimbursement for
respite education;
per year
program (state
aged 60 and
have an
expenses based on
one-time grants
and Older
older
informal
care receiver total
up to $2000 for
American Act
primary
household income.
home
funds)
caregiver who
No cost-sharing
modification,
is providing
for assessment,
assistive devises.
Statewide
majority of
case management,
Persons who
care.
benefits
meet income
Initiated in
counseling, and
requirements
1987; became
education and
may be eligible
statewide in
training of
for subsidies
1991
caregivers.
from $200-
Persons with
$500/month in
income below
services or
200% of FPL, no
supplies.
cost-sharing.
Persons between
200%-380% of
poverty, receive
services on a
sliding fee scale
basis. Persons with
income above
380% of FPL,
receive no cash
reimbursement.
Source: Prepared by CRS based on Pennsylvania’s Guide to Medicaid-Funded Home and Community-Based Services, and data provided by Pennsylvania Department on Aging and
the Pennsylvania Department of Public Welfare.
NF – nursing facility
PDA – Pennsylvania Department of Aging
DPW – Department of Public Welfare
OIM – Office of Income Maintenance
OMA – Office of Medical Assistance
OSP – Office of Social Programs
OMR – Office of Mental Retardation
SSI – Supplemental Security Income
a “Aggregate Cost Cap” refers to costs spread across all persons receiving services under the waiver. “Individual Cost Cap” refers to costs per each person receiving services under the waiver.
CRS-62
Appendix 2. Population in Large State Facilities
Table A-1. Population in Large State Facilities for Persons with
Mental Retardation/Developmental Disabilities, Closure Date,
and Per Diem Expenditures
Residents
Average per
Large state MR/DD
Year
with
diem
facilities or
facility
Year
MR/DD
expenditures
units
opened
closed
on 6/30/01
FY01 ($)
Altoona center
1982
--
112
287.67
(Altoona)
Cresson center
1964
1982
--
--
(Cresson)
Embreeville center
--
--
(Coatesville)
1972
1997
Ebensburg center
1957
--
320
395.00
(Ebensburg)
Hamburg center
1960
--
203
398.00
(Hamburg)
Laurelton center
1920
1998
--
--
(Laurelton)
Marcy center
1975
1982
--
--
(Pittsburgh)
Pennhurst center (Pennhurst)
1908
1988
--
--
Polk center (Polk)
1897
453
400.00
Allentown mental
--
--
retardation unit
(Allentown)
1974
1988
Retardation Unit
--
--
(Clarks Summit)
1974
1992
Harrisburg mental
--
--
retardation unit
(Harrisburg)
1972
1982
Hollidaysburg mental
--
--
retardation center
(Hollidaysburg)
1974
1976
Mayview mental
--
--
retardation unit
(Mayview)
1974
2001
Philadelphia mental
--
--
retardation unit
(Philadelphia)
1983
1989
CRS-63
Residents
Average per
Large state MR/DD
Year
with
diem
facilities or
facility
Year
MR/DD
expenditures
units
opened
closed
on 6/30/01
FY01 ($)
Somerset mental retardation
--
--
unit (Somerset)
1974
1996
Selinsgrove center
--
(Selinsgrove)
1929
477
363.00
Torrance mental retardation
--
--
unit (Torrance)
1974
1998
Warren mental retardation
--
--
unit (Warren)
1975
1976
Wernersville mental
--
--
retardation unit
(Wernersville)
1974
1987
Western center
1962
2000
--
--
(Cannonsburg)
White Haven center
--
(White Haven)
1956
245
380.00
Woodhaven center
--
--
(Philadelphia)55
1974
1985
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).
55 Woodhaven (PA), although state-owned, became nonstate in 1985.
CRS-64
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
m e t h o d o l o g y , s e e s a m e : a v a i l a b l e a t
[http://www.census.gov/population/www/projections/ppl47.html].
CRS-65
Additional Reading
Pennsylvania Department of Aging. A Guide Book for Older Pennsylvanians:
Benefits and Rights for Older Pennsylvanians. Dec. 2001.
Pennsylvania Department of Aging. Comprehensive Options Assessment Form.
Pennsylvania Department of Aging. Office of State Long-Term Care Ombudsman.
How to Select Long-Term Care in Pennsylvania. Oct. 11, 1996.
Pennsylvania Department of Aging. State Plan on Aging, 2000-2004.
Pennsylvania Department of Public Welfare. Pennsylvania’s Guide to Medicaid-
Funded Home and Community-Based Services. Bulletin, July 2001.
Pennsylvania Department of Public Welfare. Department of Aging. Direct Service
Worker Initiative: Plan Guidelines for Local Initiatives. Aug. 2001.
Pennsylvania Department of Public Welfare. Office of Mental Retardation.
Program Overview.
Pennsylvania Department of Public Welfare. Office of Mental Retardation. A Guide
to Supporting People Moving from State Centers into the Community. Feb.
1998.
Pennsylvania Department of Public Welfare. Office of Mental Retardation. How
Can I Have the Life That I Want? A Guide to Choosing Supports and Services.
2000.
Pennsylvania Intra-Governmental Council on Long-Term Care. Options in Long-
Term Care. Interim Report of the Pennsylvania Intra-Governmental Council
on Long-Term Care. Feb. 1990.
Pennsylvania Intra-Governmental Council on Long-Term Care. Medicaid Estate
Recovery Work Group, Part I. Report to the Pennsylvania Intra-Governmental
Council on Long-Term Care. Mar. 1999.
Pennsylvania Intra-Governmental Council on Long-Term Care. Medicaid Estate
Recovery Work Group, Part II. Report to the Pennsylvania Intra-Governmental
Council on Long-Term Care. Mar. 1999.
Pennsylvania Intra-Governmental Council on Long-Term Care. Long-Term Care
and Services Discussion Guide, 1997.
Pennsylvania Intra-Governmental Council on Long-Term Care. Workers in Long-
Term Care. In Their Own Words. Report to the Pennsylvania Intra-
Governmental Council on Long-Term Care. Feb. 2001.
CRS-66
Pennsylvania Intra-Governmental Council on Long-Term Care. Pennsylvania’
Frontline Workers in Long-Term Care: The Provider Organization Perspective.
Report to the Pennsylvania Intra-Governmental Council on Long-Term Care.
Feb. 2001.
Pennsylvania Department of Health. Department of Aging. Intra-Governmental
Council on Long-Term Care. Long-Term Care and Services Information Focus
Group Findings: What Do You Need and How Do You Want It? June 2000.
Pennsylvania Department of Public Welfare. Office of Mental Retardation. How
Can I Have the Life That I Want? A Guide to Choosing Supports and Services,
2000.
Pennsylvania Department of Public Welfare. Office of Mental Retardation.
Everyday Lives: Making it Happen. Nov. 2001.
Pennsylvania Home and Community-Based Services External Stakeholder Plan
Team. Home and Community-Based Services Project: A Discussion Summary.
Apr. 2001.