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

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

Order Code RL32054
CRS Report for Congress
Received through the CRS Web
A CRS Review of 10 States: Home and
Community-Based Services – States Seek to
Change the Face of Long-Term Care: Florida
August 21, 2003
Sidath Viranga Panangala
Analyst in Social Legislation
Domestic Social Policy Division
Carol O’Shaughnessy, Rob Weissert, and Julie Stone
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: Florida
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 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 long-term care
spending. By far, the primary payer for long-term care is the federal-state Medicaid
program, which in 2001 paid for almost half of all long-term care spending.
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. To assist Congress understand issues that
states face in providing long-term care services, the Congressional Research Service
(CRS) undertook a study of 10 states in 2002. This report, one in a series of ten state
reports, presents background and analysis about long-term care in Florida.
Florida has the largest proportion of elderly in the nation– 2.8 million persons
are over age 65, representing 17.6% of its total population. The dramatic rise in the
number of persons age 65 and over in Florida over the next 20 years–estimated to
total 26.3% of total population–will further stretch the already limited resources of
the state. Aware of the pressing demand for long-term care services well into the 21st
century, policymakers in Florida have begun seriously to review options for
improving financing and delivery of long-term care for the frail elderly and persons
with disabilities.
Federal and state Medicaid spending in Florida was $2.6 billion in FY2001, and
30.5% of Medicaid spending was for long-term care. In FY2001, 75.3% of total
Medicaid spending was for institutional care. Slightly less than 25% of Medicaid
spending was channeled towards home and community-based services. Although
institutional care dominated Medicaid spending, there has been slow but steady
expansion of home and community-based services funding, both through the use of
Medicaid’s waiver programs as well as significant support through state sources.
Among the major issues facing long-term care in Florida are: the fragmentation
of long-term care services among state and local agencies, an imbalance in financing
that favors institutional care rather than home and community based care, shortage
of health care workers and well-trained staff throughout the long-term care
continuum, and disparities in availability of services across the state.
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
Florida . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
Summary Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
Demographic Trends . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
Administration of Long-Term Care Programs . . . . . . . . . . . . . . . . . . . . . . . . 4
Trends in Institutional Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
Trends in Home and Community-Based Care . . . . . . . . . . . . . . . . . . . . . . . . 5
Long-Term Care Spending . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Issues in Financing and Delivery of Long-Term Care . . . . . . . . . . . . . . . . . . 6
Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
Demographic Trends . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
Need for Long-Term Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
State Initiatives to Study Florida’s Long-Term Care System . . . . . . . . . . . . 9
The Commission on Long-Term Care in Florida
(The Kiser Commission) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
The Task Force on Availability and Affordability of Long-Term
Care (The Brogan Commission) . . . . . . . . . . . . . . . . . . . . . . . . . 10
Florida Office of Long-Term Care Policy . . . . . . . . . . . . . . . . . . . . . . 11
Administration of Long-Term Care Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
State Administration . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
Department of Elder Affairs (DOEA) . . . . . . . . . . . . . . . . . . . . . . . . . 11
Agency for Health Care Administration (AHCA) . . . . . . . . . . . . . . . . 12
Department of Children and Families (DCF) . . . . . . . . . . . . . . . . . . . 12
Department of Health (DOH) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12
Responsibility for Functional and Financial Eligibility
Determinations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15
Local Administration
. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16
Area Agencies on Aging . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16
Community Care for the Elderly (CCE) Lead Agencies . . . . . . . . . . . 16
Local Service Providers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17
Florida’s Long-Term Care Services for the Elderly and Persons
with Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18
Trends in Institutional Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18
Trends in Home and Community-Based Care . . . . . . . . . . . . . . . . . . . . . . . 19
Medicaid 1915(c) Waivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19
Section 1115 Waivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24
Managed Care Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26
Real Choice System Change Grant
(Florida’s Olmstead Grant) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28

Florida’s Long-Term Care Services for Persons with Mental Retardation
and Developmental Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29
Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29
Trends in Institutional Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32
Trends in Home and Community-Based Care . . . . . . . . . . . . . . . . . . . . . . . 33
Financing Long-Term Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35
Medicaid Spending in Florida . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35
Medicaid Long-Term Care Spending in Florida . . . . . . . . . . . . . . . . . . . . . 37
State Spending on Home and Community-Based Services
for the Elderly . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41
Medicaid State Spending on Services for Persons with Mental
Retardation and Developmental Disabilities . . . . . . . . . . . . . . . . . . . . 42
Issues Facing Florida’s Long-Term Care System . . . . . . . . . . . . . . . . . . . . . . . . 44
Institutional Bias . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 44
Lack of Statewide Home and Community-Based
Services System . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45
Fragmentation of Responsibilities for Long-Term Care . . . . . . . . . . . 46
Quality of Long-Term Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47
Long-Term Care Staffing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47
Waiting Lists for Home and Community-Based Care . . . . . . . . . . . . 48
Appendix 1. Major Home and Community-Based Long-Term Care
Programs for the Elderly and Persons with Disabilities in Florida . . . . . . . 50
Appendix 2. Population in Large State Facilities . . . . . . . . . . . . . . . . . . . . . . . . 70
Appendix 3. About the Census Population Projections . . . . . . . . . . . . . . . . . . . . 71
List of Figures
Figure 1. Percentage Population Increase Over 2000 in Florida . . . . . . . . . . . . . . 8
Figure 2. Florida Long-Term Care System . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14
Figure 3. Institutional and Home and Community-Based Services
as a Percent of Medicaid Long-Term Spending in Florida,
1990-2001 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38
Figure 4. Medicaid Long-Term Care Spending by Category in Florida
1990-2001 (in constant 2001 dollars) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39
Figure 5a. Medicaid Long-Term Care Spending in Florida by Category,
FY1990 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40
Figure 5b. Medicaid Long-Term Care Spending in Florida by Category,
FY2001 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40
Figure 6. Medicaid Home and Community-Based Services Waiver
Spending by Target Population in Florida, FY2001 . . . . . . . . . . . . . . . . . . 41

List of Tables
Table 1. Florida Population Age 65 and Older,
1990 and 2000 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
Table 2. Elderly Population as a Percent of Total Population,
Florida and the United States, 2025 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8
Table 3. Estimated Number of Persons with Two or More Limitations
in Activities of Daily Living (ADLs), by Poverty Status, in Florida . . . . . . . 9
Table 4. Nursing Home Characteristics in Florida
and the United States . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18
Table 5. Persons with Mental Retardation and Developmental
Disabilities Served in Residential Settings, by Size of Residential
Setting, 1990, 1995, and 2000 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33
Table 6. Share of Total Spending by Category, Florida
and the United States,1990-2001 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36
Table 7. State Spending for Medicaid as a Percent of Total State Spending,
Florida and the United States, 1990-2001 . . . . . . . . . . . . . . . . . . . . . . . . . . 36
Table 8. Medicaid Long-Term Care Spending In Florida,
FY1990-FY2001 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38
Table 9. Medicaid Spending in Florida, Total Spending and Long-Term
Care Spending, by Category, and Percent Change,
FY1990-FY2001 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39
Table 10. Florida Department of Elder Affairs Budget,
SFY2002-2003 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42
Table 11. Federal and State Spending for Institutional and Community
Services for Persons with Mental Retardation/Developmental
Disabilities in Florida, 1990 and 2000 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43
Table A-1. Population in Large State Facilities for Persons with Mental
Retardation/ Developmental Disabilities, Closure Date, and
Per Diem Expenditures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 70
Acknowledgments
CRS wishes to acknowledge the significant time and contributions of many state
officials and stakeholders who provided information on long-term care services in
the State of Florida. Without their invaluable experience and insight, this report
would not be possible. We would particularly like to acknowledge officials from the
Agency for Health Care Administration; Department of Children and Families;
Department of Elder Affairs; House Committee on Elder Affairs and Senate
Committee on Health, Aging and Long-Term Care in the Florida Legislature; and the
Office of Budget and Policy in the Governor’s office. We also would like to thank
the numerous advocates and providers who provided valuable perspectives on the
long-term care services delivery system in Florida.
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 Florida.
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: Florida
Introduction: Federal Legislative Perspective
States choosing to modify
their programs for long-term
The Social Security Amendments of 1965, which
created the Medicaid program, required states to
care face significant challenges.
provide skilled nursing facility services under their
Financing of nursing home care
state Medicaid plans, and gave nursing home care the
has dominated long-term care
same level of priority as hospital and physician
spending for decades. The
services.
federal financing structure that
“Section 1902 (a) A State plan for medical assistance
created incentives to support
must provide for inclusion of some institutional and
institutional care reaches back
some noninstitutional care and services, and, effective
to 1965. A number of
July 1, 1967, provide (A) for inclusion of at least . . .
converging factors have
(1) inpatient hospital services . . .; (2) outpatient
supported reliance on nursing
hospital services; (3) other laboratory and X-ray
services; (4) skilled nursing home services (other than
home spending. Prior to
services in an institution for tuberculosis or mental
enactment of Medicaid, homes
diseases) for individuals 21 years of age or older; (5)
for the aged and other public
physicians’ services . . . .;” P.L. 89-97, July 30, 1965.
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
facilities (effective in 1990). As a result of these various amendments, people
1 CRS Report 83-181, Nursing Home Legislation: Issues and Policies, by Maureen Baltay.
(archived report available from the authors).

CRS-2
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
great deal of congressional
care (for nursing homes and care in intermediate care
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
in community settings, rather than in institutions. However, it was not until 1981 that
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
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
through waiver of federal law, within state-defined eligibility requirements, service
availability, and limits on numbers of persons served.
5 States may waive the following Medicaid requirements: (1) statewideness – states may
cover services in only a portion of the state, rather than in all geographic jurisdictions; (2)
comparability of services – states may cover state-selected groups of persons, rather than all
persons otherwise eligible; and (3) financial eligibility requirements – states may use more
liberal income requirements for persons needing home and community-based waiver
services than would otherwise apply to persons living in the community. For further
information, see CRS Report RL31163, Long-Term Care: A Profile of Medicaid 1915(c)
Home and Community-based Services Waivers, by Carol O’Shaughnessy and Rachel Kelly.

CRS-4
A CRS Review of Ten States: Report on
Florida
With its warm climate and low taxes Florida has attracted growing numbers of
elderly. Compared to other states Florida has the highest percentage of elders in its
population. Aware of the challenges facing the state, policymakers have started to
take a serious look at options for improving the financing and delivery of long-term
care services in the state.
Florida’s long-term care system is complex. The Long-Term Care Policy
Advisory Council succinctly described this complexity in its report to the Governor
and the State Legislature: “ we have often heard the analogy that Florida’s long-term
care delivery system is like an onion, having many layers.... The issues are not just
layer upon layer but they also have dimension. The mathematical term is “fractal,”
meaning the closer one looks at a problem the more complex it becomes.”6
Navigating through this complex web of services, multiple agencies, and
numerous waivers is no easy task for an individual or family caregiver looking for
long-term care services. Over the past several years Florida has begun to document
these challenges and find ways to mitigate these issues and work toward the goal of
a seamless long-term care system in the state.
Summary Overview7
Demographic Trends
! There are more than 2.8 million people age 65 and older in Florida
representing 17.6% of its population. Its population age 85 and
over, the group with greatest need for long-term services, numbers
over 330,000, ranking it 4th highest in the nation.
! By 2025, Florida’s age 65 and over population will exceed one-
quarter (26.3%) of its total population compared to 18.5%
nationally.
Administration of Long-Term Care Programs
! There are a number of state agencies involved in the delivery of
long-term care services in Florida. According to state officials,
coordination among these agencies is complex and time consuming.
Recent legislation created an Office of Long-Term Care Policy in the
6 Report of the Long-Term Care Policy Advisory Council, Report to Governor Jeb Bush
and the 2003 Florida Legislature, p. 1, Feb. 1, 2003.
7 Information based on Florida 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 (MR/DD).

CRS-5
Department of Elder Affairs (DOEA) to coordinate the various
agencies responsible for the implementation and delivery of long-
term care services in the state.
! Florida has no single point of entry into the long-term care system
across all populations. However, the Comprehensive Assessment
Review and Evaluation System for Long-Term Care Services
(CARES) program serves as a entry point for people over 21 years
of age applying for Medicaid nursing home services and community-
based services.
Trends in Institutional Care
! There are 734 nursing homes with about 84,000 beds in Florida.
The state has a lower bed capacity than the nation as a whole. The
number of beds per 1,000 persons age 65 and older is about 30
compared to the national average of 53 beds.
! The number of persons with mental retardation and developmental
disabilities (MR/DD) residing in large state institutions in Florida
has declined over the years partly as a result of litigation. Persons
living in large institutions serving 16 or more persons declined from
35% of all persons living with MR/DD in group residencies in 1990
to 27% in 2000.
! Due to a strong and vocal disability advocacy community in the
state, Governor Bush has personally devoted a great deal of attention
to addressing the issues faced by the developmental disabilities
community. The Governor has established a committee to redesign
the developmental disabilities program, including plans to develop
a single point of entry and a new client assessment tool.
Trends in Home and Community-Based Care
! Florida administers a wide range of home and community-based
long-term care services for the frail elderly and for those with
MR/DD. The state has 118 Medicaid Section 1915(c) waiver
programs that target specific populations groups with specific
eligibility criteria making it a complicated process for someone
applying for services to navigate through the system.
! There are several pilot and demonstration programs such a Social
Health Maintenance model (S/HMO), and Program of All-inclusive
Care for the Elderly (PACE), among others. These programs are
intended to find cost-effective ways of providing care for people in
their own homes and communities.
8 One of the 11 Medicaid Section 1915(c) home and community-based waiver programs
covers children with certain medical conditions; this waiver is outside the scope of this
report.

CRS-6
Long-Term Care Spending
! Long-term care comprises a significant portion of Medicaid
spending in Florida – almost 31% of all Medicaid spending was
devoted to long-term care in FY2001. Nursing home spending
represented almost two-thirds of total Medicaid long-term care
spending.
! In FY2001, Florida spent $551 million on Medicaid Section 1915(c)
home and community-based waiver programs, twelve times the
amount spent in 1990 even after adjusting for inflation.
! According to consumer advocates, most of the public spending for
long-term care for the elderly has been for nursing homes, and there
has been significantly less emphasis on home and community-based
services. However, the opposite is true for the developmental
disabilities programs, where there has a been a large increase in
public funds for supporting home and community-based care. Both
state and federal funding for developmental services increased 94%
from $502.8 million in 1998 to $975 million in 2002.
Issues in Financing and Delivery of Long-Term Care
! Fragmentation of services at all levels and across all agencies is a
significant problem according to state officials. There are many
instances where three or four agencies are responsible for portions
of a single program. According to state documents, fragmentation
in the delivery system creates unnecessary delays in delivery of
services.
! Florida has eleven discrete Medicaid waiver programs, each
covering discrete populations, which has led to a categorical
approach to service delivery to the frail elderly and the disabled, and
those with mental retardation and developmental disabilities. While
the waiver programs have expanded opportunities for home and
community-based services, according to state officials and stake-
holders, having several waivers covering different populations with
different sets of eligibility criteria has further complicated access to
services.
! 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 whereas home and community-based
services is not.
! According to state officials and consumer advocates, consumers in
Florida do not have access to a single source of information about
long-term care. Creating a statewide system that is consumer
friendly has been challenging to state administrators.

CRS-7
Background
Demographic Trends
With almost 16 million people, Florida has the fourth largest population in the
nation. It has the largest proportion of the elderly in the nation. Its population age
65 and older – 2.8 million persons in 2000 – represents 17.6% of its total population
(Table 1). Additionally, there are more than 710,000 noninstitutionalized Floridians
65 and older living alone – another group that has a high need for formal long-term
care services. According to the 2000 U.S. Census, during the period 1990-2000
Florida’s 65 and older population grew by 18.5%, compared to 12% for the rest of
the United States. The 85 and over population, those with the greatest need for long-
term care services, grew by more than 57% between 1990 and 2000 – from 210,110
to 331,287 (Table 1).
Table 1. Florida Population Age 65 and Older,
1990 and 2000
2000
1990
2000
%
population
change
rank in U.S.
% of total
% of total
1990-
(based on
Age
Number
population
Number
population
2000
percent)
65+
2,369,431
18.3%
2,807,597
17.6%
18.5%
1
65-74
1,369,652
10.6%
1,452,176
9.1%
6.0%
1
75-84
789,669
6.1%
1,024,134
6.4%
29.7%
1
85+
210,110
1.6%
331,287
2.1%
57.7%
4
Under
10,568,495
81.7%
13,174,781
82.4%
24.7%
51
65
Total
12,937,926 100%
15,982,378
100%
23.5%
4
Source: U.S. Census Bureau. Profile of General Demographics for Florida: 1990. 2000:
[http://www.census.gov/census2000/states/fl.html]. Percentages may not sum to 100% due to rounding.

CRS-8
Additionally, the elderly population is predicted to grow significantly in the
coming decades, and will considerably outpace the growth of the rest of the
population. By 2025, Florida’s 65 and over population will exceed one-quarter
(26.3%) (Table 2) of its total population compared to 18.5% nationally, and its older
population (85 and over) will grow to 3%, as compared to 2.2% of the overall U.S.
over 85 population (see Table 2).
Figure 1. Percentage Population Increase Over 2000 in Florida
130%
120%
110%
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
2005
2010
2015
2020
2025
65-74
75-84
85+
65+
Total
Under 65
Source: CRS calculations based on data from the U.S. Census Bureau. Projections:
[http://www.census.gov/population/www/projections/st_yrby5.html]; analyzed data from State
Populations Projections: Every Fifth Year.
Table 2. Elderly Population as a Percent of Total Population,
Florida and the United States, 2025
Percent of total
Percent of total
population,
population,
Age
Florida
United States
65+
26.3%
18.5%
65-74
14.9%
10.5%
75-84
8.4%
5.8%
85+
3.0%
2.2%
Under 65 population
73.7%
81.5%
Source: CRS calculations from Census projections released in 1996. See Appendix 2 for information
about the projections, their methodology and their limitations.

CRS-9
Need for Long-Term Care
The number of people needing assistance with Activities of Daily Living
(ADL)9 will have a profound effect on the need for long-term care. According to
estimates derived by combining data generated by The Lewin Group, and 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, significant trends emerge
concerning the need for long-term care in Florida. Persons age 65 and over with two
or more limitations in ADLs are estimated to increase 15% from 2002 to 2010, while
those individuals aged 85 and older with two or more limitations in ADLs are
estimated to increase by 32% (Table 3). Elderly population growth as projected,
coupled with increasing need for assistance, will place greater demands on public and
private long-term care resources in Florida.
Table 3. Estimated Number of Persons with Two or More
Limitations in Activities of Daily Living (ADLs), by Poverty
Status, in Florida
2002
2005
2010
Percent of
Persons with 2+ ADLs by age and income
Poverty
18-64
65+
85+
18-64
65+
85+
18-64
65+
85+
Up to
10,982 13,459 2,895 11,577 14,083
3,234 12,417 15,442
3,830
100%
Up to
17,029 33,197 9,301 17,950 34,942 10,391 19,254 38,343 12,306
150%
Up to
22,331 47,585 13,327 23,539 50,084 14,890 25,248 55,002 17,633
200%
All income 45,104 98,210 27,577 47,544 103,386 30,810 50,992 113,247 36,487
Source: CRS analysis based on projections generated by The Lewin Group 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).
State Initiatives to Study Florida’s Long-Term Care System
Florida has taken many initiatives to study the long-term care system in the state
and to find options to remedy perceived deficiencies in the system. To this end, the
State Legislature in 1994 established The Commission on Long-Term Care in Florida
under the chairmanship of former state Senator Curtis Kiser. Moreover, during the
2000 session, the Legislature created the Task Force on Availability and
Affordability of Long-Term Care under the chairmanship of Lieutenant Governor
9 These include self-care tasks such as bathing, dressing, eating, toileting and transferring
from a bed to a chair.

CRS-10
Frank T. Brogan. As a result of the recommendations made by the Brogan
Commission, during the 2002 legislative session the State Legislature passed Senate
Bill 1276 establishing the Office of Long-Term Care Policy to be situated in the
Department of Elder Affairs. This office is intended to play a major role in
coordinating all state agencies’ policies with regard to long-term care in the state.
Below is a brief description of the Kiser Commission, the Brogan Commission, and
the Office of Long-Term Care Policy.
The Commission on Long-Term Care in Florida (The Kiser
Commission). The Commission was created by Florida’s Legislature in the 1994-
1995 General Appropriation Act and was active during 1995-1997. The Commission
was tasked with studying the programming and financing of long-term care in Florida
and developing a framework for long-term care planning for the state.10 The Kiser
Commission called for a “complete redesign”of Florida’s long-term care system,
including integrating acute and long-term care systems through the use of federal
waivers, creating a managed long-term care system, and encouraging individual
financing of long-term care, among other things.11
As a result of the work of this Commission, significant changes took place in
the long-term care system in the state. The State Legislature consolidated parts of the
long-term care system, and made uniform many regulations that affect providers of
long-term care. For instance, Florida’s Legislature passed HB 1675, which resulted
in the Department of Elder Affairs (DOEA) gaining responsibility for coordinating
long-term care policies among executive branch agencies in the state. Furthermore,
in 1995 the Legislature reallocated rule-writing authority to DOEA for assisted living
facilities, adult foster homes, and adult day care facilities.
The Task Force on Availability and Affordability of Long-Term Care
(The Brogan Commission). The Brogan Commission was established by the
State Legislature during the 2000 session. The Commission was tasked with
assessing the long-term care system in the state including quality of care, alternatives
to nursing homes, impact of lawsuits against nursing homes, and the financial
stability of the long-term care industry in the state among other things.12 The guiding
principal of the Task Force that shaped its discussions and recommendations was to
provide reasonable access to care in the least restrictive environment, and to provide
adequate protection under the law.
When the Task Force convened to make final recommendations to the
Legislature prior to the 2001 session, members could not reach a consensus on
recommendations and voted not to submit recommendations to the State Legislature
as they were originally charged to do. However, in consultation with the Florida
Policy Exchange Center on Aging at the University of South Florida, the Task Force
published an informational report, which included analysis of the tort reform issue
10 The Commission on Long Term Care in Florida, Managing Florida’s Future, mission
statement p. 1, Dec. 15,1995.
11 Report of the Long-Term Care Policy Advisory Council, Report to Governor Jeb Bush
and the 2003 Florida Legislature, p. 1, Feb. 1, 2003.
12 The Florida Senate, Interim Project Report 2002-025, p. 5, Feb. 2001.

CRS-11
relating to limiting lawsuits and punitive damages against nursing homes, as well as
the availability of liability insurance for the industry. As a result of this
informational report, the State Legislature passed legislation that implemented
improvement of nursing home staffing standards, increased sanctions for regulatory
violations by nursing homes, and enhanced nursing home staff training programs.
Florida Office of Long-Term Care Policy. The Office of Long-Term Care
Policy grew out of the need to have a coordinated planning structure for the long-
term care system in the state. In 2002, the Florida State Legislature established by
statute (SB 1276) an Office of Long-Term Care Policy within the Department of
Elder Affairs. The major function of the office is to ensure close communication and
coordination among state agencies that develop and administer long-term care
services in order to ensure a more efficient and coordinated long-term-care service
delivery system. Additionally, the office is charged with identifying duplication and
unnecessary services in the long-term-care system, making recommendations to
eliminate inappropriate service provision, and developing strategies for promoting
and implementing cost-effective home and community–based services as an
alternative to institutional care.
In September 2002, the Long-Term Care Policy Advisory Council in the Office
of Long-Term Care Policy commenced its work. The Council met several times,
heard presentations by experts, held public hearings, and discussed the long-term care
system in Florida. On February 1, 2003, the Council issued a report to the Governor
and State Legislature on these deliberations and proposed an outline for the future
work of the Council. The Long-Term Care Policy Advisory Council decided to focus
on four broad policy areas. These are: access, coordination/integration of services,
quality/evaluation of services, and financing/resources.13
Administration of Long-Term Care Programs
State Administration
At the state level planning and administration of long-term care services for the
elderly and persons with disabilities are shared among many agencies. Figure 2
displays an organization chart of state and local agencies with responsibilities for
administration of long-term care.
Department of Elder Affairs (DOEA). The Department was established in
1991 in response to a 1988 general election constitutional referendum calling for the
creation of a state agency focused on the needs of the elderly.14 It is the primary
agency for administering home and community-based service programs for the
elderly, and it has responsibility for overseeing both federal and state funds
appropriated for aging programs. The Department implements a wide range of
programs for the elderly including: Medicaid Section 1915(c) home and community-
13 Report of the Long-Term Care Policy Advisory Council, Report to Governor Jeb Bush
and the 2003 Florida Legislature, p. 1, Feb. 1, 2003.
14 The Florida Senate, Interim Project Report 2001-005, Nov. 2000.

CRS-12
based waivers, Assisted Living for the Elderly, Aged and Disabled Adult waivers, a
Consumer-Directed Care Project, and Older Americans Act programs, among others.
Moreover, the Department has rulemaking authority for the Ombudsman program
which has oversight for assisted living facilities, adult family care homes, and
hospice programs.
Additionally, the Department staff is responsible for administering the
Comprehensive Assessment Review and Evaluation System for Long-Term Care
Services (CARES) tool.15 The program staff is tasked with determining functional
eligibility of persons who need nursing home and community-based services. The
Department also oversees the eleven area agencies on aging established by the Older
Americans Act (OAA). The area agencies administer funds locally and contract with
a variety of provider agencies to offer a wide array of services designed to meet the
needs of their senior constituencies.
Agency for Health Care Administration (AHCA). The Agency was
created by the Florida Legislature as part of the Health Care Reform Act of 1992. It
is the chief health policy entity for the state. The Agency is primarily responsible for
administering Florida’s Medicaid program and also determines the state’s need for
nursing homes (Certificate of Need for nursing homes). Before determining if there
is a need for a new bed, AHCA must determine that the need cannot be met through
provision, enhancement or expansion of home and community-based services.
AHCA is also responsible for licensure and regulation of hospitals, medical clinics,
and home health agencies, and nursing facilities. AHCA has financial and policy
oversight for Medicaid’s Section 1915(c) home and community-based waivers and
is entrusted with the authority for reimbursing Medicaid service providers.
Department of Children and Families (DCF). The Department is
responsible for determining financial eligibility for all Medicaid applicants.
Additionally, DCF is responsible for the determination of functional eligibility for
all participants in the Developmental Services [Section 1915 (c)] waiver regardless
of age. The Department administers several programs for persons with
developmental disabilities, through offices in 13 service districts and one region.
Department of Health (DOH). Established in 1889, Florida’s Department
of Health is one of the oldest state agencies. The Department is responsible for
administering the AIDS waiver, and the Traumatic Brain and Spinal Cord Injury
program (described elsewhere in this report). Additionally, DOH administers the
Children’s Medical Services Program, which provides home and community – based
services for children who have chronic and life threatening diseases or who are
15 CARES provides on-site assessment for all individuals age 21 and older applying for
Medicaid nursing facility services and certain home and community-based services (further
information provided in the next section).

CRS-13
fragile and have medical complications. DOH is also responsible for licensure of
medical professionals.
State Administration of Long-Term Care at A Glance
! Department of Elder Affairs (DOEA) – Administers the nursing home pre-
admission screening (CARES) program, contracts out services and monitors
home and community-based services for the elderly. Trains Assisted Living
Facility and Adult Family Care Home administrators and staff. Has rule writing
authority for assisted living facilities, adult day care and adult family care homes.
Serves as Ombudsman for assisted living facilities, nursing homes, and family
care homes.
! Agency for Health Care Administration (AHCA) – Administers the state
Medicaid program. Issues licences and regulates nursing facilities, assisted living
facilities, and family care homes. Pays Medicaid claims to service providers.
Administers the Certificate of Need (CON) program for nursing homes among
other things.
! Department of Children and Families (DCF) – Determines financial eligibility
for all Medicaid services. Administers the Developmental Disabilities (DD)
waiver, and determines functional eligibility for DD waiver services.
! Department of Health (DOH) – Administers the Traumatic and Spinal Cord
Injury program, and the AIDS waiver, that provides home and community-based
services for people with HIV or AIDS. DOH also regulates medical equipment,
and issues medical licenses to service providers.

CRS-14
Figure 2. Florida Long-Term Care System
Source: Prepared by CRS based on Florida documents.

CRS-15
Responsibility for Functional and Financial Eligibility
Determinations
Functional eligibility for those applying for long-term care services is
determined by Department of Elder Affairs (DOEA) staff. Assessment staff are
housed in the Comprehensive Assessment Review and Evaluation System for Long-
Term Care Services (CARES) assessment units spread throughout the state.
The CARES program was initiated by the Florida Legislature in 1980. The
intent in creating the program was to verify that those applying for Medicaid nursing
home assistance actually required nursing home care rather than less expensive
community-based care.16 The first CARES program was a pilot begun in March 1982
in the Jacksonville, St. Petersburg, and Miami areas.17 By 1986 the State Legislature
determined that CARES had demonstrated its cost effectiveness and approved its
expansion statewide. Prior to the creation of the Department of Elder Affairs
(DOEA) in 1992, the CARES program was housed in the Department of Health and
Rehabilitative Services.18 In 1995, the CARES program was transferred to DOEA
to better coordinate the pre-admission screening program. Over the years the role of
CARES has been expanded beyond the pre-admission certification for nursing
homes.19 DOEA has day-to day operational responsibility for the program through
an interagency agreement with the Agency for Health Care Administration(ACHA).
AHCA monitors statewide CARES activities through annual programmatic and
administrative reviews.
There are 17 CARES units in district offices throughout Florida. The program
conducts a significant number of assessments of Medicaid eligible persons at risk for
nursing home care and makes referrals to alternative care in a community-based
setting. CARES provides on-site assessment of nursing facility applicants by a
registered nurse and/or a social worker. The assessment evaluates the emotional,
medical, psychosocial condition as well as limitations in activities of daily living
(ADLs) of the individual. The goal of CARES is to place the applicant in the least
restrictive, most appropriate setting with emphasis on community placement.
Following the assessment, interdisciplinary staff including a physician determine the
placement level of care (LOC) needed. All individuals aged 21 and older applying
for Medicaid nursing facility services and home and community-based services must
receive CARES assessment. All nursing facility residents converting to Medicaid
from Medicare, private pay or Veterans Administration benefits must apply for the
Medicaid Institutional Care Program (ICP) and undergo a CARES assessment.20
During SFY2001-2002, 69,482 applicants at risk for nursing homes placement were
16 Comprehensive Assessment & Review for Long Term Care Services (CARES): A Report
to the Florida Legislature, Dec. 31, 2002, p. 4.
17 Ibid, p. 4.
18 The Florida Senate, Interim Project Report 2002-136, Nov. 2001, p. 8.
19 Ibid. p. 8.
20 Department of Elder Affairs 2002 Resource Manual, Jan. 2002, p. 75.

CRS-16
assessed by CARES staff and of those 23.5% of applicants were referred for waiver
services.
The Department of Economic Affairs in the Department of Children and
Families (DCF) does the financial eligibility determination for both the elderly and
those individuals with mental retardation and developmental disabilities in the state.
Additionally, DCF is responsible for determining functional eligibility of all adults
with developmental disabilities. The Children’s Medical Services Unit located in the
Department of Health determines functional eligibility for children requiring nursing
home care.
Local Administration
At the local level, long-term care is administered by three different entities: area
agencies on aging, Community Care for the Elderly (CCE) lead agencies, and local
providers. The area agencies are ultimately responsible for administration of long-
term care at the local level. In Florida there are 11 area agencies on aging and 53
CCE lead agencies. A brief description of each of the local administrative entities
is given below.
Area Agencies on Aging. Authorized under Title III of the Older American
Act, area agencies are quasi-governmental entities mandated to serve as focal points
to which elders, caregivers, and the public can turn for information, referral, and
assistance. These agencies facilitate the coordination of long-term care at the local
level. Florida has 11 planning and service areas (PSAs) throughout the state. These
geographic areas are designated based on factors that include the distribution of
elders, the need for services with emphasis on the needs of low- income minorities,
and existing boundary areas for the delivery of social services.21 There is an area
agency on aging in each of the 11 PSAs. Area agencies conduct assessment, and
develop area plans on aging based on the needs of older persons in the PSA. Area
agencies administer home and community-based waiver services as well as other
federal, state, local, and private funds through contracts with lead agencies and other
local providers that deliver direct services programs. These programs include: the
Aged and Disabled Waiver, Assisted Living for the Elderly, Home Care for the
Elderly, Alzheimer Disease Initiative, and Emergency Home Energy Assistance for
the Elderly Program.22
Community Care for the Elderly (CCE) Lead Agencies. These agencies
were set up by state statute and are contracted by the area agencies on aging to
provide direct consumer services. These service provider agencies are not-for-profit
corporations administered by a single governing board, or county or local
government agencies. There are 53 lead agencies in the state, of which 44 are non-
for-profit corporations and nine are county or local government agencies. Lead
agencies are responsible for coordinating a community service system, and
21 Justification Review Services to Elders Program Department of Elder Affairs Report No.
01-66 Dec. 2001, available at [http://www.oppaga.state.fl.us/reports/pdf/0166rpt.pdf].
22 Florida Department of Elder Affairs, Aging in Florida: Program and Funding Matrix
2001.

CRS-17
performing ongoing case management activities of eligible clients.23 In this role they
perform intake and client assessments and develop client care plans. The lead
agencies are also tasked with providing direct services to clients pursuant to their care
plans. Case management consists of a number of activities intended to assist elders
to remain in the community and avoid the costs of nursing home care. Case
management includes assessing need, determining eligibility for services, assisting
the elder client in obtaining community resources, and monitoring the client’s
progress.24 The CCE lead agencies have the option of subcontracting selected
services.
Local Service Providers. Providers are selected through a local competitive
bidding process, and are funded by the area agencies on aging or by the CCE lead
agencies or both. These service providers translate funding into direct services.
They also play a visible role as community elder advocates.25 As of June 2001, over
1,100 local service providers had contracts with lead agencies to meet the needs of
the elders in their communities.26
23 Ibid.
24 Elder Affairs Takes Steps to Separate Case Management from Other Services, OPPAGA
Report No. 98-83, June 1999, available at
[http://www.oppaga.state.fl.us/reports/pdf/9883rpt.pdf].
25 Florida Department of Elder Affairs, Aging in Florida: Program and Funding Matrix
2001.
26 Justification Review Services to Elders Program Department of Elder Affairs Report No.
01-66 Dec. 2001, available at [http://www.oppaga.state.fl.us/reports/pdf/0166rpt.pdf].

CRS-18
Florida’s Long-Term Care Services for the Elderly
and Persons with Disabilities
Trends in Institutional Care
Florida has 734 nursing homes with about 84,000 beds. The number of beds per
1,000 persons age 65 and older is about 30 compared to the national average of 53
beds. There are about 253 beds per 1,000 elderly persons age 85 and older compared
to about 435 beds nationally (Table 4). The occupancy rate in Florida is
approximately 82.6%, only slightly higher than the national average of 80.8%.
Table 4. Nursing Home Characteristics in Florida
and the United States
(data are for 1999-2000)
Characteristic
Florida
United States
Number of facilities
734 17,023
Number of residents
69,122
1,490,155
Number of beds
83,639
1,843,522
Number of Medicaid beds
36,217
841,458
Number of beds per 1,000 pop. age 65 and older
29.8
52.7
Number of beds per 1,000 pop age 75 and older
61.7
111.1
Number of beds per 1,000 pop age 85 and older
252.5
434.8
Occupancy rate
82.6%
80.8%
Source: Data came from the following sources: U.S. Census Bureau, Census 2000 Demographic
Profile 1. American Health Care Association (AHCA), Facts and Trends: The Nursing Facility
Sourcebook. For the U.S., American Health Care Association.
As in most states, long-term care in Florida is dominated by spending for
nursing home care. In FY2001, almost two-thirds of total Medicaid long-term care
spending was for nursing home care. According to state officials and consumer
advocates, the financing incentives built into the Medicaid program cause a bias
toward spending for institutional care.
Certificate of Need. Given the growing expenditures associated with
institutional care, the state has taken a number of initiatives to regulate the growth
of nursing homes in the state. The Certificate-of-Need (CON) program is a
regulatory program that determines the need for additional nursing home beds.27
Under the program, health care providers must obtain prior state approval before
opening new facilities or expanding services. The factors considered in the CON
27 The Florida Senate Interim Project Report 2002-136, Nov. 2001, p. 3.

CRS-19
formula are number of elderly population in the area, existing beds per elder
population, and the existing occupancy rate in 33 separate market areas.28
In 2001, the State Legislature passed into law SB 1202 placing a moratorium on
issuance of new CONs for nursing home beds (other than non-Medicaid beds in
Continuing Care Facilities) until July 1, 2006.29 The intention of the Legislature was
to limit the number of beds and to channel more funds to home and community-based
care in keeping with the wishes of Florida’s elderly and those with disabilities. As
of October 2001, 2,285 nursing home beds were approved for construction under
previous certificate of need approvals.30
Quality of Care. Senate Bill 1202 implemented sweeping changes that will
increase direct care staff in nursing homes, as well as implement an internal risk-
management and quality assurance program. The program will assess patient care
practices, review facility quality indicators and develop plans of action to correct and
respond quickly to identified quality deficiencies. Additionally, the bill increases the
requirements and training period for nursing home staff, and gives the state agencies
increased powers to penalize nursing homes and assisted living facilities for
deficiencies in quality care.
Implementation of Medicaid 1915 (c) Waiver Program. In 1982, Florida
implemented its first waiver for the elderly and persons with disabilities. The home
and community-based waivers authorized under Section 1915(c) of the Social
Security Act provide states the option of caring for individuals in their own homes
and communities rather than in institutions. When the intensive services of a nursing
home are not medically required, this option preserves the individual’s independence
and ties to family and friends at a lower cost than institutional care.
Trends in Home and Community-Based Care
Home and community-based services for the elderly and persons with
disabilities are mainly provided through a series of Medicaid Section 1915(c) waiver
programs and a Medicaid Section 1115 waiver as a demonstration program. The
state has also experimented with some programs that provide home and community-
based services as an alternative to nursing home care, expand consumer choice, and
contain costs. These waiver and non-waiver programs cater to a targeted group of
individuals who meet specific eligibility criteria.
Medicaid 1915(c) Waivers. Florida operates 11 waiver31 programs for the
elderly and persons with disabilities. Certain general eligibility criteria apply to each
28 Ibid, p. 3.
29 Department of Elder Affairs Home and Community-Based Services Program, on the web
at [http://www.oppaga.state.fl.us/profiles/5025/right.asp?programnum=5025].
30 The Florida Senate Interim Project Report 2002-136, Nov. 2001, p. 4.
31 One of the 11 Medicaid Section 1915(c) home and community-based waiver programs
covers children with certain medical conditions; this waiver is outside the scope of this
report.

CRS-20
of the waivers for the aged and those with disabilities. First, in order to be eligible
for services, persons must have income that does not exceed 300% of the
Supplemental Security Income (SSI) level ($1,656/month in 2003) and must meet
SSI’s resources limit of $2,000 (for an individual).32 Second, except for two waiver
programs (Nursing Home Diversion Waiver, and Channeling Waiver), all are
operated on a statewide basis.
The following section describes Medicaid Section1915(c) waiver services,
demonstration programs and state supported home and community-based programs
(for more detailed information, see Appendix 1; waiver programs for persons with
mental retardation/developmental disabilities are presented in the next section).
Aged/Disabled Adult Waiver Program. The program was implemented
statewide on April 1, 1982. The waiver is administered by the Department of Elder
Affairs, and the Agency for Health Care Administration is responsible for the
program’s financial and policy oversight. At least one Medicaid waiver specialist is
employed at each area agency on aging to enroll clients and monitor provider
operations and service quality.
Recipients of services must be age 60 or older, or age 18 to 59 and meet the
Social Security definition of disability. Clients must also meet nursing facility level
of care as determined by the Comprehensive Assessment Review and Evaluation
System for Long-Term Care Services (CARES) program. Among the most utilized
services are: adult companion, attendant care, case aid, chore services, homemaker
and personal care services, case management, respite care, and home-delivered
meals.33
During State Fiscal Year (SFY) 200234, 16,400 clients were served by this
waiver, and the maximum allowable number of clients approved under the
Aged/Disabled Adult Waiver program is 35,652.35 Services are provided on a fee-
for-service basis within a given budget and caseload. Medicaid reimburses at the
maximum allowable Medicaid fee for a specific service, or the providers fee,
whichever is lower. The annual cost per client is $5,272.36
Nursing Home Diversion Waiver Program (Long-Term Care
Community Diversion Project). This waiver was implemented on March 25,
1997. The Department of Elder Affairs administers the program and the Agency for
Health Care Administration is responsible for financial and policy oversight.
32 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.
33 Florida Agency for Health Care Administration, Florida Medicaid Summary of Services,
Jan. 2002.
34 State Fiscal Year (SFY) is from July, 1, 2001 through June 30, 2002.
35 Florida’s Medicaid Long-Term Care System, A Presentation for the Congressional
Research Service. May 14, 2002.
36 Agency for Health Care Administration, SFY2002 Data.

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Clients must be at least age 65 and over, and meet nursing home eligibility
criteria. Those who are eligible for both Medicare and Medicaid (i.e., “dual
eligibles”) receive long-term care and acute care services under the waiver. To
receive services, clients must reside in one of the following counties: Orange,
Osceola, Seminole, Brevard, Palm Beach, Martin, Okeechobee, St. Lucie, or Indian
River. The most utilized services include: adult companion, assisted living, family
training, home-delivered meals, case management, homemaker, personal care, respite
and home health care.37
Services are provided by managed care providers under contract with the
Department of Elder Affairs. Providers are reimbursed at a capitated rate, on a per
member, per month basis. In SFY2002, 1,177 clients were served under the program,
and the maximum allowable number of clients approved under the waiver is 2,300.
The annual cost per client is $28,104.38 The high unit cost is due to a monthly
capitation payment of $2342 per member per month, which is the highest
reimbursement rate of all the waivers that serve elders. The state has undertaken an
actuarial study to determine a new rate structure for managed long term care
programs, and the results are expected to be released in the fall of 2003.
Channeling Waiver Program. The waiver was implemented on July 1,
1985 in Dade and Broward counties.39 In order to qualify for services persons must
be age 65 or older and reside in Dade and Broward counties. Services include the
following: adult day health care, case management, chore services, companion
services, counseling, family training, home health aide services, occupational
therapy, personal care services, personal emergency response systems, physical
therapy, respite care, skilled nursing, special home delivered meals, special drug and
nutritional assessments, special medical supplies, and speech therapy among others.
During SFY2002, 1,721 individuals were served under this waiver, and a total of
1,804 slots have been approved. The annual cost per client is $8,307.40
Project AIDS Care Waiver Program (PAC). The program was
implemented statewide on November 1, 1989, and is administered by the Agency for
Health Care Administration. In order to qualify, persons must meet the following
criteria: have a diagnosis of AIDS; meet Social Security Administration’s definition
of disability; not be enrolled in a Medicaid HMO or hospice program; have a Level
of Care determination for risk of hospitalization or placement in a nursing facility;
be able to remain safely at home; and have completed PAC waiver enrollment
application.
The case manager must complete a Needs Assessment and a Plan of Care before
authorizing any of the following services: day health care, education and support,
37 Florida Agency for Health Care Administration, Florida Medicaid Summary of Services,
Jan. 2002, p. 104.
38 Agency for Health Care Administration, SFY2002 Data.
39 This waiver provides services to persons who were served under the federal Long-Term
Care Channeling project during the 1980's.
40 Agency for Health Care Administration, SFY2002 Data.

CRS-22
personal care, skilled nursing, specialized medical equipment and supplies,
specialized personal care for foster care children and therapeutic massage.41
Recipients receive physician services, home health, therapy, prescribed drugs and
other state plan services in addition to waiver services. The PAC waiver is the payer
of last resort after services are paid by other funding sources such as Medicare,
private insurance, other third parties and the Medicaid state plan.
During SFY2002, 6,658 persons were served under the waiver. The maximum
allowable number of clients approved under the waiver program is 10,000.42 Case
management is reimbursed as a flat-fee per recipient per month. All other waiver
services are reimbursed at a fee-for-service rate for the units of service provided. The
annual cost per client is $3,719.43
Assisted Living for the Elderly Waiver Program.44 The waiver was
implemented statewide on February 1, 1995. Under the waiver clients in qualified
Assisted Living Facilities (ALFs) receive home and community-based services in lieu
of receiving services in an institution. The program includes three services: case
management, assisted living and, if needed, incontinence supplies. Through an
interagency agreement with the Agency for Health Care Administration, the
Department of Elder Affairs administers the program. The Agency for Health Care
Administration has financial and policy oversight for the program. The Department
of Elder Affairs contracts with each area agency on aging for the employment of a
Medicaid Waiver Specialist to enroll, train and monitor providers.45
To qualify for this waiver, individuals must be at least age 60, must meet Social
Security Administration’s definition of disability, and must meet one or more of the
following criteria: require assistance with four or more activities of daily living
(ADLs); require assistance with three activities of daily living plus the supervision
or administration of medication; require total assistance with one or more ADLs;
have a diagnosis of Alzheimer’s disease or another type of dementia and require
assistance with two or more ADLs; have a diagnosed degenerative or chronic medical
condition requiring nursing services that cannot be provided in a standard ALF, but
41 Florida Agency for Health Care Administration, Florida Medicaid Summary of Services,
Jan. 2002, p. 105.
42 Florida’s Medicaid Long-Term Care System, A Presentation for the Congressional
Research Service. by the Agency for Health Care Administration, May 14, 2002, slide 46.
43 Agency for Health Care Administration, SFY2002 Data.
44 Florida is one of the few states that attempts to define the philosophy underlying an
assisted living facility (ALF) in state statute. In Florida Statute Chapter 400, Part 3 (which
creates a distinct category for the licencing of assisted living facilities in Florida), it states
that the purpose of an ALF is “to promote availability of appropriate services for elderly and
disabled persons in the least restrictive and most home-like environment, to encourage the
development of facilities which promote the dignity, individuality, privacy and decision-
making ability....” This statute also directs state agencies to regulate ALFs as “residential
environments and not as medical or nursing facilities.”
45 Department of Elder Affairs 2002 Resource Manual, Jan. 2002, p. 89.

CRS-23
are available in an ALF that is licensed for limited nursing or extended congregate
care, or be a Medicaid eligible person who meets ALF criteria.46
Services most often used include: attendant care, chore services, companion
services, homemaker, intermittent nursing, medication administration (within the
ALF license), personal care, physical therapy, specialized medical equipment and
supplies, and therapeutic social and recreational services. During SFY2002, 3,993
clients were served, the total number of clients approved under the waiver is 3,196.47
The annual cost per client is $7,673.48
Traumatic Brain Injury/Spinal Cord Injury Waiver Program. The
waiver provides persons with brain or spinal cord injuries with an option to receive
services in a home and community-based setting. The Department of Health has
administrative oversight for the waiver. The Agency for Health Care Administration
is responsible for the financial and policy oversight of the program. In order to
receive services individuals must be clients of the Brain and Spinal Cord Injury
Program and at least age 18.
Waiver services include: adult day training, chore services, companion services,
environmental modification, homemaker, in-home supports, non-residential support
services, occupational therapy, personal care assistance, personal emergency response
systems, physical therapy, private duty nursing, psychological services, respiratory
therapy, residential habilitation, residential nursing, respite care, skilled nursing
services, special medical equipment and supplies, special medical home care,
specialized mental health services, support coordination, supported employment,
supported living coaching, therapeutic massage, and transportation among others.
During SFY2002, 147 persons were served and 200 slots were approved. The
annual cost per client $13,556.
Adult Cystic Fibrosis Waiver Program. The waiver was approved on
September 25, 2002, and is implemented statewide. The Department of Children and
Families, Adult Services Program Office, operates the Adult Cystic Fibrosis (CF)
Waiver Program.
To be eligible for the CF waiver services, an individual must be between ages
18 through 59 years, and diagnosed with cystic fibrosis. Additionally, the client must
be determined to be at risk of hospitalization, and meet the Supplemental Security
Income (SSI)-related Medicaid or the Institutional Care Program (ICP) income and
asset requirements.
Waiver services include: acupuncture, adult companion, adult day health, chore
service, counseling (individual and family), durable medical equipment, exercise
46 The recipient should be awaiting discharge from nursing facility placement and be unable
to return to a private residence because of a need for supervision, personal care, periodic
nursing services or a combination of the three.
47 Agency for Health Care Administration, SFY2002 Data.
48 Ibid.

CRS-24
therapy, massage therapy, occupational therapy, personal care, personal emergency
response service, physical therapy, prescribed drugs, respiratory therapy, respite care,
skilled nursing, specialized medical equipment and supplies, transportation, and
vitamins and nutritional supplements.
Enrollment of individuals for the waiver is scheduled to begin on January 1,
2004 and the approved number of clients for the first, second, and third year of
enrollment are 75, 115, and 150 respectively.
Adult Day Health Waiver Program. The waiver was approved in March
2003. The program plans to serve approximately 130 individuals in each of the three
years it will be in operation. To receive services participants must be age 75 or older,
meet nursing facility level of care, be a resident of Lee or Palm Beach county, and
reside with a caregiver. One provider will be chosen through a competitive
procurement process to serve individuals in Palm Beach County, and one will be
chosen to serve Lee County. There is one service to be provided under this waiver,
comprehensive adult day health care. The project is designed to test whether this
service alone is enough to prevent or delay nursing home placement of frail, elderly
individuals.
Section 1115 Waivers. Florida is one of the states in the country that applied
for a demonstration waiver from the Centers for Medicare and Medicaid Services
(CMS) to implement a Consumer Directed Care project. Section 1115 of the Social
Security Act authorizes the Secretary of Health and Human Services(DHHS) to
conduct research and demonstration projects under several programs authorized by
the Social Security Act, including Medicaid and the State Children’s Health
Insurance Program (SCHIP).
Specifically, Section 1115 authorizes the Secretary to waive certain statutory
requirements for conducting these projects. For this reason, the research and
demonstration projects are often referred to as Section1115 “waiver” projects. Under
the waiver authority, states may modify virtually all aspects of their programs without
Congressional review. Requirements that may be waived include:
! “freedom of choice” - The requirement that Medicaid beneficiaries
have the freedom to choose their own medical care providers;
! “comparability” - The requirement that services be comparable in
amount, duration, and scope for all persons in each eligibility group;
and
! “state wideness” - The requirement that states provide services on a
state-wide basis, rather than only in a portion of the state.
Furthermore, the experimental program cannot be conducted
together with more limited waivers such as Section 1915 (c)
waivers.49
49 For further information see CRS Report RL30813 Federal and State Initiatives to
Integrate Acute and Long-Term Care: Issues & Profiles by Edward A. Miller, Jan. 22, 2001.

CRS-25
Consumer Directed Care. The Centers for Medicare and Medicaid Services
(CMS) approved Florida’s Cash and Counseling Demonstration project in October
1998 and it was implemented on March 1, 2000. Cash and Counseling is a self-
directed program that is designed to ensure that consumers have a direct voice in
making decisions with regard to the care they will receive. This project supports the
Olmstead Decision50 by promoting community-based services for persons with
disabilities who otherwise would be placed in an institutional setting.
Persons eligible to receive services include the frail elderly, and adults and
children with disabilities. To receive benefits, eligible individuals are randomly
placed into two groups: a treatment group that receives a monthly cash benefit used
to purchase needed services under the personal care benefit, and a control group that
receives services under the traditional (agency provided) method. The demonstration
project is voluntary and the participants may leave the program at any time.
Consumer Directed Care is available to adults who receive services from the
Aged and Disabled Waiver and the Traumatic Brain Injury/Spinal Cord Injury waiver
and residing in selected counties.51,52 Additionally, adults who receive services under
the Developmental Services waiver (described later in the report) are eligible for
Consumer Directed Care if they reside in one of selected counties.53 However, it is
available to children receiving services from the Developmental Services Waiver on
a statewide basis.54 Participants will be involuntarily disenrolled from the treatment
group if there is a misuse of the cash grant, if the individual’s ability to manage their
50 In its 1999 opinion, in Olmstead v. L.C., the U.S. Supreme Court held that the Americans
with Disabilities Act (ADA) requires states to transfer individuals with mental disabilities
from institutions to less confining community settings when a state treatment professional
has determined the latter are appropriate, the community setting is not opposed by the
individual with a disability, and the placement can be reasonably accommodated by the state
[for further information see CRS Report RS20588 Olmstead v. L.C.: Implications and
Subsequent Judicial, Administrative, and Legislative Actions by Melinda De Atley, Nancy
Lee Jones, May 31, 2000.
51 The counties are: Brevard, Broward, Charlotte, Collier, Dade, Hillsborough, Lee,
Manatee, Martin, Okeechobee, Orange, Osceola, Palm Beach, Pasco, Pinellas, Polk,
Sarasota, Seminole and St. Lucie.
52 During the initial phase of the Section 1115 demonstration, individuals from these
waivers wishing to participate in Consumer Directed Care program were enrolled. They
were randomly place in either an experimental group where they "cashed out" their
traditional Section 1915(c) waiver services and were able to manage a budget and hire their
own care staff or they were placed into the control group where they continued to receive
services through the traditional Section 1915(c) waiver structure.
53 The counties are : Calhoun, Franklin, Jefferson, Liberty, Madison, Taylor, Holmes,
Jackson, Washington, Alachua, Bradford, Columbia, Dixie, Gilchrist, Hamilton, Lafayette,
Levy, Putnam, Suwannee, Union, DeSoto, Glades, Hendry, Flagler, Volusia, Citrus,
Hernando, Lake, Sumter, Marion, Hardee, Highlands, Indian River and Monroe. Brevard,
Broward, Charlotte, Collier, Dade, Hillsborough, Lee, Manatee, Martin, Okeechobee,
Orange, Osceola, Palm Beach, Pasco, Pinellas, Polk, Sarasota, Seminole and St. Lucie.
54 Florida Agency for Health Care Administration, Florida Medicaid Summary of Services,
Jan. 2002, p. 95.

CRS-26
cash grant declines and there is no client representative available, or if the participant
fails to provide documentation of use of the cash benefit. Those persons assigned to
the control group continue to receive services through Medicaid waiver providers.
Personal care services are provided to consumers enrolled in the treatment group by
providers of their choosing. Treatment group consumers determine the services they
need, and from whom they would like to receive them.
Services available to consumers include: personal care, homemaking,
consumable medical and personal care supplies, home repairs and maintenance, and
adaptive services such as wheelchair ramps and grab bars among other things. The
consumers pay their workers from accounts set up for them through a fiscal
intermediary. There is no cost sharing associated with this demonstration project.
Total participation is limited to 6,000 (3,000 experimental group members and 3,000
control group members).55 Enrollment for the program ended on June 30, 2002, and
the total number of participants was 2,080.56 The Florida Legislature enacted the
Consumer Directed Care Act on July 1, 2002, authorizing it to be a statewide
program.
Managed Care Programs. Florida has experimented with several managed
long-term care models. These models range from: putting a Medicaid HMO at risk
for all Medicaid services including nursing home care for up to a year, to making
participating HMOs liable for unlimited nursing home payments for as long as the
person remains enrolled. These programs create strong incentives to reduce nursing
home usage in order to reduce costs. Apart from these programs, as of February 1,
2003 the state has implemented a Program of All Inclusive Care for the Elderly
(PACE) and has been developing a second-generation social HMO (S/HMO)
model.57
The Program of All-Inclusive Care for the Elderly (PACE).58,59 The
PACE program is based on the On Lok Senior Health Services program, which was
founded in the Chinatown section of San Francisco in the 1970s. The purpose of the
PACE program is to provide the frail elderly, and Medicaid-eligible elderly a
continuum of acute care and long-term care in their own homes and communities and
avoid institutionalization.60 At its inception the program was operated as a federal
demonstration project, and the Balanced Budget Act (BBA) of 1997 made it a
permanent benefit under Medicare and an optional benefit states can offer under
55 Ibid.
56 Personal communication with the staff of the Department of Elder Affairs.
57 Ibid.
58 Department of Elder Affairs, 2002 Resource Manual, Jan. 2002, p. 75-76.
59 For further information see CRS Report RL30813 Federal and State Initiatives to
Integrate Acute and Long-Term Care: Issues & Profiles by Edward A. Miller, Jan. 22, 2001.
60 Managed Care for the Elderly and The Role of the Aging Network by Larry Polivka, Ph.D.
and Randa Robinson-Anderson, M.A. June 1999.

CRS-27
Medicaid.61 As a result of this federal law, states now have the freedom to
implement PACE projects without applying for waiver status from CMS. In 1998,
the Florida Legislature authorized financing for the program.
The program targets individuals who would otherwise be placed in a nursing
home under Medicaid and provides them with a comprehensive range of services.
PACE providers receive both Medicare and Medicaid capitated payments, and they
are responsible for providing a full continuum of medical and long-term care services
within the capitated amounts they receive. To be eligible for the program applicants
must be 55 years of age or older; be certified eligible for nursing home care; and live
in the program’s service area.62 The program is administered by the Department of
Elder Affairs in consultation with the Agency for Health Care Administration, and
services are delivered through adult day care centers. The program was implemented
on February 1, 2003, and as of August 2003, 12 individuals are enrolled in the
program. At present only one provider is available. Medicaid’s monthly capitation
rates vary according to the type of individual Medicare coverage. If the individual
has coverage under Medicare Parts A and B then the monthly capitation rate is
$1,944, if the individual has only Medicare Part B then the monthly capitation rate
is $2,677, if the individual has no Medicare coverage then the monthly capitation
rate is $3,169.
Frail Elderly Program. This is a state administered, capitated, managed long-
term care program contracted to an HMO. At present, the program is implemented
in Dade and Broward counties. The purpose of the program is to provide and
manage services for the frail elderly and to prevent or delay nursing home placement.
To be eligible for the Frail Elderly program, recipients must be 21 years of age
or older, meet the state’s requirements for nursing home level of care, and be in need
of services as determined by CARES. The program provides comprehensive and
medically necessary services. A case manager is assigned to each enrollee and is
responsible for coordinating all program services and implementing services
according to the plan of care. The Frail Elderly program is responsible for provision
of all covered services the member needs which are not included in the nursing home
rate.
Services provided under this program include: adult day health care, adaptive
equipment, homemaker or personal care, and caregiver training among others.
During SFY2002, 3,099 recipients were being served by the Frail Elderly program.
The average monthly reimbursement rate is $1,275 per recipient.
Social Health Maintenance Organizations(S/HMO). Similar to
Medicare HMOs, S/HMOs provide coverage for acute care services. However,
S/HMOs provide expanded benefits to include limited nursing home benefits and a
61 For further information on the PACE Program see CRS Report RL30813 Federal and
State Initiatives to Integrate Acute and Long-Term Care: Issues & Profiles by Edward A.
Miller, Jan. 22, 2001, p. 40-42.
62 It is only available in part of Miami-Dade county.

CRS-28
wide array of home and community-based services such as homemaker services,
adult day care, personal care, and medical transportation among other things.63
In 1998, the Department of Elder Affairs received a grant to develop several
S/HMO demonstrations in the state for those who have long-term care needs and are
dually eligible for Medicare and Medicaid. The S/HMO model will integrate
Medicare and Medicaid services to respond to the needs of the dually eligible
population including the very frail and chronically ill. Both Medicare and Medicaid
eligible clients receive long-term care services including home and community-based
care through one managed care organization. It is expected that the S/HMO program
will be administered by the Department of Elder Affairs in consultation with the
Agency for Health Care Administration.64 As of June 2003, this program is still in
the planning stages.
Real Choice System Change Grant (Florida’s Olmstead Grant). In
addition to managed care programs, Florida has implemented a program that would
provide those with disabilities meaningful choices in selecting their living
environments and the types of services they need. In May 2001, the Centers for
Medicare and Medicaid Services (CMS) invited proposals from states to design and
implement effective and long-lasting improvements in community long-term support
systems. The major purpose of the system change grants is to assist states make
systematic changes in their programs to enable children and adults of any age who
have a disability or long-term illness live in the most integrated community setting
appropriate to their individual requirements and their preferences.
Florida received $2 million for the 3-year period beginning October 1, 2001
through October 1, 2004. The Real Choice Partnership (RCP) Project was
implemented in January 2002. The project works with a variety of Olmstead related
activities but there is no enrollment of individuals in the program. The grant was
funded by CMS in order to help states and territories comply with the Olmstead
decision.
The focus of the project is to examine all state and federal policies related to
community services while enhancing local resources that will improve the
opportunity for individuals with disabilities to live in the most integrated setting
appropriate to their need as required by Title II of the Americans with Disabilities
Act. The RCP Project is being administered by the Americans with Disabilities Act
Working Group housed in the Department of Management Services.
63 Ibid p. 43-45.
64 Department of Elder Affairs, 2002 Resource Manual, Jan. 2002, pp. 76-79.

CRS-29
Florida’s Long-Term Care Services for Persons with
Mental Retardation and Developmental Disabilities
Overview
Services to persons with mental retardation and other developmental disabilities
have changed dramatically over the last half of the 20th century 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 (Supplemental Security Income) and
SSDI (Social Security Disability Insurance) and to service providers through the
Medicaid program, and significant litigation brought on behalf of persons with
mental retardation.65
The early history of services to persons with mental retardation is characterized
by the development of large state institutions or training schools begun during the
latter part of the 19th century and continuing through the first part of the 20th century.
Between 1920 and 1967, institutions quadrupled in size and peaked to almost
200,000 individuals nationwide in 165 free-standing state-operated mental
retardation institutional facilities.66 Today, some states are still faced with the legacy
of large state-operated institutions. In the nation as a whole and in Florida, over the
last several decades, large state-operated institutions have been closed or downsized,
a development that has been prompted by litigation.
The majority of the state’s initiatives for providing non institutional services for
persons with developmental disabilities and mental retardation have been driven by
class action law suits filed against the state of Florida to prevent the state from
unnecessary institutionalzation of these individuals. In a major law suit, Wolf Prado-
Steinman et al., v. Bush et al.,67 advocates within the developmentally disabled
community argued that individuals who participated in Florida’s Section 1915(c)
home and community-based waiver program did not receive the “full range of
services” authorized under the individual’s service plan. In May 2000, all parties to
the lawsuit signed an 18-point settlement agreement, which required Florida to:
provide the full range of waiver services to recipients; improve the quality of services
under the home and community-based waiver; improve the workload ratios of
support coordinators; and complete a study of waiver payment rates.68 In March
1998, the 11th U.S. Circuit Court of Appeals ruled in Does v. Chiles (now John/Jane
65 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 D.C. 1998. (Hereafter cited as Braddock,
The State of the States in Developmental Disabilities.)
66 Ibid.
67 221 F.3d 1266 (Eleventh Circuit. 2000).
68 Further information about this settlement agreement is available at
[http://www.advocacycenter.org/news/sep1100a.htm].

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Does v. Bush et al.,)69 that no state can place an individual on a waiting list for
Intermediate Care Facility for the Mentally Retarded (ICFs/MR) services indefinitely.
The court ruled that Florida’s attempt to restrict the availability of ICFs/MR and
home and community-based waiver services to eligible applicants was a violation of
federal Medicaid law. The decision stated that individuals had the same entitlement
to ICF/MR services as other non-waiver Medicaid services, and as an entitlement,
ICF/MR services must be provided with “reasonable promptness to eligible
applicants.”70
In Brown et al., v. Bush et al., a 1998 class action lawsuit, the plaintiffs
maintained that the institutionalization of those with developmental disabilities is a
violation of the Americans with Disabilities Act’s (ADA) integration mandate,
Section 504 of the Rehabilitation Act, federal Medicaid law, and the U.S.
Constitution. The plaintiffs in this case sought a permanent injunction against the
state from unnecessarily placing individuals with developmental disabilities in
institutions. The injunction was not granted, 71, 72 and the parties involved went in to
a lengthy arbitration process. The case is scheduled for trial again in early 2004.
Since taking office, Governor Bush has committed the state to improve
resources and services for those with mental retardation and developmental
disabilities. Governor Bush has proposed increased funding for the Developmental
Disabilities program every year since 1994 and has put forward a plan to redesign the
Developmental Disabilities program. The primary goal of the redesign is to refine
the current system so that it is more responsive to individuals, families, and other
stakeholders, while enhancing consumer choice and control over services used. The
Florida Department of Children and Families, and the Agency for Health Care
69 136 F.3d 709 (Eleventh Circuit. 2000).
70 United States Court of Appeals, Eleventh Circuit. Does v. Chiles (case # No. 96-5144)
available at [http://laws.findlaw.com/11th/965144man.html].
71 In March 1999, the U.S. District Court for the Southern District of Florida, adopted the
Plaintiffs’ definition of class and certified the class as: “all persons who on or after January
11998, have resided, are residing, or will reside in DSIs (Developmental Services
Institutions) including all persons who have been transferred from institutions to other
settings, such as ICF, group homes, or SNF's but remain defendant's responsibility; and all
persons at risk of being sent to DSIs.” The state appealed the class certification to the U.S.
Court of Appeals for the Eleventh Circuit. In an unpublished opinion, the Eleventh Circuit
Court agreed that the definition of class was too broad and remanded the case to the District
Court with the following definition of class: “all individuals with developmental disabilities
who were residing in a Florida DSI as of Mar. 25,1998, and/or are currently residing in a
Florida DSI who are Medicaid eligible and presently receiving Medicaid benefits, who have
properly and formally requested a community-based placement, and who have been
recommended by a state-qualified treatment professional or habilitation team for a less
restrictive placement that would be medically and otherwise appropriate, given each
individual's particular needs and circumstances.” However, the state did not agree with the
second definition of class and the parties involved sought to negotiate the reduction of
number of individuals served in institutions [Case Number 99-11544 JJ].
72 Status Report: Litigation Concerning Medicaid Services for Persons with Developmental
and Other Disabilities by Gary A. Smith, Jan.16, 2003, p. 20, available at
[ http://www.hsri.org/index.asp?id=news].

CRS-31
Administration have jointly initiated the redesign by establishing stakeholder work
groups made up of designated stakeholder representatives who have been charged
with providing consultation.73 The Department of Children and Families has held
several public hearings and has awarded a contract to Mercer Human Resources
Consulting to help with the redesign effort. Mercer has a toll-free number and a
website that will be used to provide information about the redesign. The complete
system redesign is scheduled for delivery during 2003.
In addition to litigation, Florida’s system of services for persons with
developmental disabilities and mental retardation has been influenced by a number
of other significant factors. These include:
! enactment of the Developmental Disabilities Prevention and
Community Service Act in 1982. With this legislation, the
Legislature declared that the greatest priority should be given to
community-based residential placements and services;74
! implementation of the Medicaid Section 1915 (c) waiver in 1982;
! addition of the definition of “supported living” to the Developmental
Disabilities and Community Act in 1991, giving official recognition
to this service as a residential service option;
! 1992 expansion and amendment of Florida’s Home and Community-
Based Services Waiver to add a broad array of services;75
! development of a strategic planning process by the Developmental
Services Program Office in 1994, to enable individuals with
developmental disabilities to “live everyday lives,” including
meaningful employment, and full inclusion in community
activities;76
! development of a “Cash and Counseling Program” with a grant from
the Robert Wood Johnson Foundation to demonstrate that traditional
case management services can be replaced with less costly
counseling services for some clients with mental retardation and
developmental disabilities.77
There are an estimated 288,534 persons of all ages with developmental
disabilities and mental retardation in Florida.78 As of June 30, 2002 the Department
73 Florida Department of Children and Families, Developmental Disabilities Program
Office-E-Bulletin, Aug. 16, 2002, available at
[http://www.myflorida.com/cf_web/myflorida2/healthhuman/ddp/ebulletins/081602ebull
etin.pdf].
74 Developmental Services Program Florida’s Evolution to Participant-Driven Managed
Care 1980-2000. p. 1. (Communication from the Developmental Disabilities Program office
in the Department of Children and Families).
75 Ibid. p. 2.
76 Ibid. p. 3.
77 Ibid. p. 9.
78 Communication from the Developmental Disabilities Program office in the Department
(continued...)

CRS-32
of Children and Families was serving 30,902 Floridians with developmental
disabilities.79 The State Fiscal Year (SFY) 2002-2003 budget for persons with
developmental disabilities program is $975 million, representing a 94% increase over
the last 4 years.80 The funds are projected to serve about 1,546 individuals in 2002-
2003 who need waiver services and continue to provide all medically necessary
services to the approximately 25,000 individuals currently enrolled in the
Developmental Services Waiver.81
The Developmental Disabilities Program in the Department of Children and
Families has operational responsibility for the Developmental Services home and
community-based waiver. The program receives funding from state General Revenue
(GR) funds and the federal Medicaid waiver funds. A small proportion of the GR
funds are set aside for some support services for those who do not qualify for
Medicaid waivers.82
Trends in Institutional Care
The number of persons residing in large state institutions in Florida has declined
over the years partly as a result of litigation. Persons living in large institutions with
16 or more persons declined from 35% of all persons living in group residences in
1995 to 27% in 2000 (Table 5). The Medicaid home and community-based services
wavier option (discussed below) has allowed Florida to focus on development of
small congregate care options. In 2000, 12,618 persons with mental retardation were
living in group residential settings, with 50% living in residences of 6 or fewer
persons. This is an increase since 1995 when 40% of the total in group residences
were in small facilities (see Table 5).
78 (...continued)
of Children and Families, Apr. 16, 2003.
79 Ibid.
80 Department of Children and Families, Developmental Disabilities Program Office, E-
Bulletin, May 24, 2002. p. 2. available at [http://www.state.fl.us/cf_web/].
81 Notice to Individuals Who Have Become a Client of Developmental Disabilities or
Submitted an Application to Become a Client of Developmental Disabilities since July 1,
1999, available at
[http://www5.myflorida.com/cf_web/myflorida2/healthhuman/ddp/about_us/0203spendp
lan.pdf].
82 Department of Children and Families, Developmental Disabilities Program Office, E-
Bulletin , Apr. 26,2002. p. 1., available at [http://www.state.fl.us/cf_web/].

CRS-33
Table 5. Persons with Mental Retardation and Developmental
Disabilities Served in Residential Settings, by Size of
Residential Setting, 1990, 1995, and 2000
Persons served by residential setting
1990
1995
2000
11,340
12,618
TOTAL
N/A
(100%)
(100%)
3,961
3,378
16+ PERSONS
N/A
(35%)
(27%)
Nursing facilities
N/A
234
191
State institutions
1,992
1,619
1,534
Private ICFs/MR
1,335
1,339
1,274
Other residential
724
769
379
5,252
2,849
2,937
7 - 15 PERSONS
(25.1%)
(23.3%)
Public ICFs/MR
0
0
0
Private ICFs/MR
600
600
574
Other residential
4.652
2,249
2,363
4,531
6,303
<6 PERSONS
N/A
(40%)
(50%)
Public ICFs/MR
0
0
0
Private ICFs/MR
0
159
194
Other residential
N/A
4,372
6,109
Source: The State of the States in Developmental Disabilities: 2002 Study Summary, by David
Braddock, Richard Hemp, Mary C. Rizzolo, Susan Parish, and Amy Pomeranz. Coleman Institute for
Cognitive Disabilities and Department of Psychiatry, University of Colorado, June 2002.
N/A= Not available.
Trends in Home and Community-Based Care
In Florida, as in many other states in the nation, the Medicaid Section 1915(c)
waiver has played an important role in providing revenue for home and community-
based services for those with developmental disabilities and mental retardation. As
stated before, Governor Bush has committed additional resources to the
Developmental Disabilities program in the state, especially to address the waiting list
for home and community-based services. State and federal funding for
developmental services increased 94% from $502.8 million in 1998 to $975 million
in 2002.

CRS-34
Medicaid 1915(c) Waivers: Developmental Services Waiver
Program. There are two Medicaid Section 1915(c) waivers for persons with
developmental disabilities. The waiver was originally implemented on April 1, 1982
as a combined waiver together with the Aged/ Disabled Adult Services. However,
in 1985 the waiver was split into two separate waiver programs in order to
accommodate the growing needs of the two diverse populations. The Developmental
Services Program Office in the Department of Children and Families has day-to-day
operational responsibility, and the Agency for Health Care Administration has
financial and policy oversight of the program.
To be eligible, clients must be 3 years of age or older and meet the level-of-care
criteria for intermediate care facilities for those with developmental disabilities
(ICFs/DD).83 Financial eligibility of service recipients is assessed by the Department
of Children and Families. The waiver includes a wide range of services: adult day
training, adult dental, behavioral services, chore services, companion services,
dietitian, environmental modification, homemaker, in-home supports, non-residential
support services, occupational therapy, personal care assistance, personal emergency
response systems, physical therapy, private duty nursing, psychological services,
respiratory therapy, residential habilitation, residential nursing, respite, skilled
nursing services, special medical equipment and supplies, special medical home care,
speech, specialized mental health services, support coordination, supported
employment, supported living coaching, therapeutic massage, and transportation.
The allowable number of clients that may be served under the waiver is 25,352,
and during SFY2002, 24,418 persons were served. Medicaid reimburses service
providers based on rates approved by the Department of Children and Families, and
the Agency for Health Care Administration. The annual cost per client is $18,417.
Supported Living Waiver. The waiver was implemented statewide on
October 1, 1995. This waiver replaced the Medicaid Community Supported Living
Arrangement program. The Developmental Disabilities Office in the Department of
Children and Families has operational responsibility for the Supported Living Waiver
Program. The Agency for Health Care Administration is responsible for the financial
and policy oversight of the program. In order to receive services under the waiver,
individuals must be age 18 or older, meet the level of care for ICFs/MR, and be able
to direct their own support in all but limited areas. In addition, they must participate
in the planning and implementation of support necessary to manage their households.
The waiver services include: adult day training, in-home support services,
supported employment, and transportation among other things. The allowable
number of clients that may be served under the waiver is 200 and during SFY2002,
6 persons were served. The annual cost per client is $5,477.
83 For further information on level-of-care criteria see Department of Children and Families,
See Developmental Services Home and Community-Based Services Waiver, Services
Directory 2001. p. 4-5, available at
[http://www5.myflorida.com/cf_web/myflorida2/healthhuman/ddp/publications/].

CRS-35
Financing Long-Term Care
In most states, the federal-state Medicaid program is the chief source of funding
for long-term care. In Florida the Medicaid program accounted for $2.6 billion in
long-term care spending in FY2001. In addition, state resources through General
Revenue (GR), state’s share of tobacco settlement funds, cigarette taxes, and drug
rebates among others, contributed toward the state Medicaid budget.
Medicaid Spending in Florida
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), Medicaid represented 19.6% of state budgets for the United
States as a whole in 2001.
In Florida, Medicaid is the second largest single category of federal and state
spending second only to elementary and secondary education as a single spending
category. Of the state’s $52.4 billion budget in 2001, federal and state Medicaid
spending represented 17% (Table 6). Federal and state spending for Medicaid
increased from 10.6% in 1990 to 17% in 2001.
State spending for Medicaid services in Florida contributed from state only
funds (excluding federal funds)84 also increased during the 1990s. As a percent of
spending for all categories of state spending, state Medicaid spending increased from
5.6% in 1990 to 9.4% in 2001–almost 1 of every 10 dollars (Table 7).
84 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 Florida was 56.62%.

CRS-36
Table 6. Share of Total Spending by Category, Florida
and the United States,1990-2001
Florida
All states
Expenditure category
1990
1995
2000
2001
2001
Total expenditures
$22,812
$37,559
$47,517
$52,390
$1,024,439
(in millions)
Medicaid
10.6%
15.8%
16.1%
17.0%
19.6%
Elementary and
28.2%
17.9%
19.8%
18.5%
22.2%
secondary education
Higher education
10.2%
7.1%
9.0%
9.0%
11.3%
Public assistance
1.8%
2.2%
0.5%
0.4%
2.2%
Corrections
3.8%
3.9%
3.5%
3.2%
3.7%
Transportation
7.1%
12.4%
12.0%
12.7%
8.9%
All other expenses
38.3%
40.6%
39.1%
39.2%
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. Numbers may not sum to 100% due to rounding.
Table 7. State Spending for Medicaid as a Percent of Total State
Spending, Florida and the United States, 1990-2001
Florida
All states
State spending
1990
1995
2000
2001
2001
Total state spending
(in millions)a $18,875
$29,142
$36,876
$40,910
$760,419
State Medicaid spending
(millions)b
$1,049
$2,580
$3,344
$3,857
$85,141
State Medicaid spending as a
percent of total state
spending
5.6%
8.9%
9.1%
9.4%
11.2%
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 categories, excluding federal funds.
b Fiscal 1995 includes $443.7 million in provider assessments, $46.8 million in pharmacy rebates and
$88.0 million in local funds. In 1995 these funds represented 12.4%, 1.8%, and 3.4% of total state
funded Medicaid expenditures, respectively. Fiscal 2000 includes $380 million in provider
assessments, $114 million in pharmacy rebates, and disproportionate share of local county funds of
$94 million. These funds represented 11.4%, 3.4%, and 2.8% of total state funded Medicaid
expenditures, respectively. Fiscal 2001 includes $368 million in provider assessments, pharmacy
rebates of $112 million, and $171 million in disproportionate share of local county funds. These funds
represented 9.5%, 2.9%, and 4.4%, respectively of total state funded Medicaid expenditures in 2001.

CRS-37
Medicaid Long-Term Care Spending in Florida85
Long-term care spending represented almost 31% of all Medicaid spending in
Florida in FY2001,86 declining slightly from 33.7% in FY1990 (Table 8). Long-term
care spending exceeded $2.6 billion in FY2001. Institutional care dominates long-
term care spending at almost $2 billion in FY2001, and is a significant share of all
Medicaid spending. However,
over the period FY1990-
FY2001, institutional care
Medicaid long-term care financing in
spending (including care in
Florida at a glance:
nursing homes and ICFs/MR)
decreased significantly as a
Medicaid long-term care spending in Florida was $2.6
share of total long-term care
billion in FY2001, and represented almost 31% of all
Medicaid spending in FY2001.
spending, while spending for
home and community-based
Spending for nursing home care as a percent of
services increased. According to
Medicaid long-term care spending decreased slightly
state officials these trends are
from 76% to 64% from FY1990 - FY2001. Spending
due to a number of factors and
for ICF/MR also decreased from 18.4% to 11%.
programs implemented during
Spending for home and community-based services as
the 1990's. These include the
a share of long-term care services increased from 6%
implementation of eleven
to 25% from FY1990-FY2001.
Medicaid 1915(c) waivers,
Spending for home and community-based waiver
Medicaid managed care
services as share of total Medicaid long-term care
programs, and increased
spending increased dramatically from almost 4% in
spending on services for persons
FY1990 to almost 21% in FY2001. This was twelve
with disabilities as a result of
times the amount spent in 1990, even after adjusting
settlement of litigation against
for inflation.
the state among other things. In
FY2001, 75.3% of Medicaid
long-term care spending was for
institutional care, 24.7% of
Medicaid long-term care
spending was channeled towards home and community-based services (Table 8).
Institutional care is still a major factor in Medicaid long-term care spending.
Institutional care represented 94.2% of total long-term care spending in FY1990,
declining to 75.3% in FY2001 (Table 8). Moreover, total home and community-
based spending increased by almost tenfold from FY1990 to FY2001 (in constant
2001 dollars) (Table 9), as compared to institutional care, which increased by 94.8%.
Furthermore, Medicaid spending for home and community-based waivers increased
twelve times the amount spent in 1990, even after adjusting for inflation.
85 This section discusses total Medicaid spending, both federal and state.
86 Total Medicaid spending using NASBO data differ from data shown in this table due to
differences in data collection methods.

CRS-38
Table 8. Medicaid Long-Term Care Spending In Florida,
FY1990-FY2001
FY1990
FY1995
FY2000
FY2001
Long-term care spending as a % of
33.7%
28.6%
30.9%
30.5%
Medicaid spending
Institutional care spending as % of long-
94.2%
83.2%
79.8%
75.3%
term care spending
Nursing home spending as a % of long-
75.8%
69.1%
67.8%
64.3%
term care spending
ICFs/MR* spending as a % of long-term
18.4%
14.1%
12.0%
11.0%
care spending
Total home and community-based services
5.8%
16.8%
20.2%
24.7%
spending as a % of long-term care spending
HCBS waivers spending as a % of long-term
3.8%
8.6%
16.4%
20.8%
care spending
Source: CRS calculations are 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. Hereinafter cited as Burwell, Medicaid Expenditures
FY1991-FY2001, 1990 total Medicaid spending is based on HCFA 64 data provided by Urban
Institute, Washington, D.C. (Hereafter referred to as Burwell, Medicaid Expenditures FY1991-
FY2001.)
* Intermediate care facilities for the mentally retarded.
Figure 3. Institutional and Home and Community-Based Services as a
Percent of Medicaid Long-Term Spending in Florida, 1990-2001
100%
90%
$804.7
80%
million
$1457.3
70%
million
$1,993.3
60%
million
50%
$655.0
40%
$294.
million
30%
$49.7
1
20%
millio
10%
0%
1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001
Institutional Care (Nursing Home and ICF-MR)
Home and Community-Based Services (Home Health, Personal Care 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, DC.

CRS-39
Table 9. Medicaid Spending in Florida, Total Spending and Long-Term
Care Spending, by Category, and Percent Change, FY1990-FY2001
(dollars in millions)
Percent change
FY1990
FY1995
FY2000
FY2001
FY1990-FY2001
(current
(current
(current
(current
(in constant 2001
Spending category
dollars)
dollars)
dollars)
dollars)
dollars)
Total Medicaid
$2,534.8
$6,134.1
$7,599.3
$8,683.5
169.4%
Total long term care*
$854.5
$1,751.4
$2,346.3
$2,648.3
143.8%
Total institutional care
$804.7
$1,457.3
$1,871.8
$1,993.3
94.8%
Nursing homes
$647.6
$1,210.6
$1,590.7
$1,702.8
106.8%
ICFs/MR**
$157.1
$246.7
$281.1
$290.5
45.4%
Total home and community
$49.7
$294.1
$474.5
$655.0
936.3%
based services
Home health
$16.9
$139.0
$74.2
$86.0
301.5%
Personal care
$0.0
$3.7
$16.1
$17.6
-
HCBS waivers
$32.9
$151.4
$384.2
$551.3
1219.8%
Source: CRS calculations based on Burwell, Medicaid Expenditures FY1991-FY2001. Total 1990 Medicaid spending,
is based on HCFA 64 data provided by Urban Institute, Washington, D.C.
* Long Term Care includes only Medicaid LTC spending–neither private pay, Medicare, nor state programs are included.
**ICFs/MR stands for Intermediate Care Facility for the Mentally Retarded.
Figure 4. Medicaid Long-Term Care Spending by Category in Florida 1990-2001
(in constant 2001 dollars)
$3.0
$2.5
$2.0
$1.5
illions
$1.0
B
$0.5
$0.0
1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001
Nurs ing Home Serv ic es
ICF-MR
Home Health
Pers onal Care
HCBS Waiv ers
Source: CRS Calculations based on Burwell Medicaid Expenditures FY1991-FY2001.

CRS-40
Figure 5a. Medicaid Long-Term Care Spending in Florida by Category,
FY1990
Total Medicaid LTC Spending: $854.5 million
ICFs/MR
18.4%
Home Health
2.0%
HCBS
5.8%
HCBS Waivers
3.8%
Nursing Home
75.8%
Source: CRS calculations based on Burwell, Medicaid Expenditures FY1991-FY2001.
Figure 5b. Medicaid Long-Term Care Spending in Florida by Category,
FY2001
Total Medicaid LTC Spending: $2,648.3 million
ICFs/MR
Home Health
11.0%
3.2%
Personal Care
0.7%
HCBS
24.7%
Nursing Home
HCBS Waivers
64.3%
20.8%
Source: CRS calculations based on Burwell, Medicaid Expenditures FY1991-FY2001.
Figures 5a. and 5b. show changes in long-term care spending patterns from
FY1990 to FY2001. In FY1990, 18.4% of Medicaid long-term care spending was
devoted to care for persons with mental retardation in ICFs/MR; by FY2001 this
spending had decreased to 11%. Additionally, nursing home spending decreased
from approximately 76% in FY1990 to 64.3% in FY2001. One of the most
significant changes is the increase in home and community-based services. In
FY1990, of total Medicaid spending for long-term care in Florida, only 5.8% was for
home and community-based services. This number has increased dramatically to
almost a quarter of total spending in FY2001.

CRS-41
The state also increased spending for home and community-based waiver
services. In FY1990, of the spending for home and community based services only
3.8% went into home and community-based waiver services. By FY2001, 20.8% of
such spending was devoted to waiver services.
Figure 6. Medicaid Home and Community-Based Services Waiver
Spending by Target Population in Florida, FY2001
Total Medicaid HCBS Waiver Spending: $551.3
Other Waivers
5%
Aged and
Dis abled
Waivers
19%
MR/DD Waivers
76%
Source: Source: CRS calculations based on Medicaid HCBS Waiver Expenditures, FY1995 through
FY2001 by Steve Eiken and Brian Burwell. The Medicaid Group, Inc. May 13, 2002.
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
retardation and developmental disabilities. In FY2001, approximately 76% of waiver
spending was for these individuals, with the balance allocated to other disability
groups.
State Spending on Home and Community-Based Services for
the Elderly
Medicaid funding represents only part of the total funding for home and
community-based services. Apart from Medicaid, Florida has used different sources
to fund its support services to persons age 60 and older. The following table shows
the Florida Department of Elder Affairs budget for State Fiscal Year (SFY) 2002-
2003. Approximately 40.8% of the total budget comes from the General Revenue
and Tobacco Settlement Trust Funds. Almost 94% of funds from all sources are
allocated for home and community-based services.

CRS-42
Table 10. Florida Department of Elder Affairs Budget,
SFY2002-2003
(in millions)
General
Tobacco
Revenue
Settlement
Federal
Other
Percent
Service Entity
Fund
Trust Fund
Funds
Funds
Total
of Total
Home and
Community-
Based
Services*
$102.2
$24.3
$179.3
$1.4
$307.2
93.3%
Comprehensive
Eligibility
Services**
3.0
0.2
8.1
0.0
11.3
3.4%
Consumer
Advocate
Services***
2.4
0.3
1.3
0.0
4.0
1.2%
Executive
Direction and
Support
Services****
2.0
0.0
4.9
0.0
6.9
2.1%
Total
$109.6
$24.8
$193.6
$1.4
329.4
100.0%
Percent of
Total
33.3%
7.5%
58.8%
0.4%
100.0%
Source: General Appropriations Act enrolled also HB29E second engrossed, also Governor’s Budget
Veto List SFY2002-2003 (figures provided by the Department of Elder Affairs budget office).
*This includes homes and community-based waiver services, Older Americans Act programs,
Alzheimer’s Disease Initiative, Home Energy Assistance program, and other contracted services such
as Adult Food program.
** Florida’s federally mandated Comprehensive Assessment & Review for Long-Term Care Services
(CARES).
*** Long-term care Ombudsman and Public Guardian programs.
**** Administrative expenses.
Medicaid State Spending on Services for Persons with
Mental Retardation and Developmental Disabilities
State and federal spending for persons with mental retardation and
developmental disabilities was $726 million in 2000 (Table 11). This represented
almost a 64% increase (in constant 2000 dollars) since 1990. Florida has devoted
considerable efforts to increase home and community-based services to persons with
developmental disabilities and mental retardation.
In 2000, almost 67% of total spending was for home and community-based
services. Of the total spending for home and community-based services in 2000,
18.5% was from federal funding for the waivers and 23.3% was from state funds.
Federal spending for waivers increased by a factor 10 (in constant 2000 dollars) since
1990 (Table 11).

CRS-43
Table 11. Federal and State Spending for Institutional and
Community Services for Persons with Mental
Retardation/Developmental Disabilities in Florida,
1990 and 2000
(in millions of dollars)
% change
1990
2000
Percent of
in constant
(current
(current
FY2000
2000
dollars)
dollars)
total
dollars
Services
$357.6 $726.1
100.0%
63.6%
Congregate/institutional services
$195.1
$240.8
33.2%
-0.5%
Federal Funds
$67.9
$115.2
15.9%
36.6%
State Funds
$127.2
$125.6
17.3%
-20.4%
Home and community-based
services
$162.5 $485.3
66.8%
140.7%
Federal funds
$53.0
$316.2
43.5%
381.1%
ICFs/MR funds
$19.1
$44.1
6.1%
86.3%
HCBS waiver
$9.5
$134.7
18.5%
1042.5%
Title XX/SSBG funds
$11.8
$11.7
1.6%
-20.7%
Other
$12.5
$125.7
17.3%
707.4%
State funds
$109.5
$169.1
23.3%
24.4%
Source: CRS calculations based on data presented in The State of the States in Developmental
Disabilities (Fifth Edition), by David Braddock et al. (1998) Washington, D.C., American Association
on Mental Retardation, p. 404 (for 1990 data). Unpublished data furnished by Richard Hemp,
University of Colorado (for 2000 data).
*Intermediate care facilities for the mentally retarded.
**Home and community-based waiver (Section 1915(c) of the Medicaid statute.
***Social Services Block Grant (Title XX of the Social Security Act).

CRS-44
Issues Facing Florida’s Long-Term Care System
Florida’s current publicly funded system of long-term care services has evolved
over time incorporating federal, state, and local initiatives and has emerged as a
loosely connected set of programs. Florida is faced with many challenges in the
implementation and delivery of long-term care services. The following discussion
highlights the key issues identified in state reports, and task forces, as well as issues
that surfaced during CRS interviews with state officials, providers, consumers, and
advocacy groups.
Institutional Bias. A recurring theme in discussions of long-term care with
state officials is the 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 who need such care and meet the 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. According to state
officials, the majority of public funding for long-term care is Medicaid spending for
institutional care, which leaves little funding to promote care in the community
which many prefer.
Officials noted that while the rhetoric regarding changing the institutional bias
has intensified over the years, actually accomplishing this objective is difficult and
moving very slowly. They indicated that the impetus for heavy reliance on
institutional care is built into the incentive structure for providers resulting in vast
funding disparities between institutional care and home and community-based care.
State officials and stakeholders stated that the institutional bias has resulted in a
provider culture that is often counter to the desires of the population needing long-
term care services and supports.
Another major impediment for states in planning an effective and efficient long-
term care system is the difficulty of managing the interrelationship of incentives
between the Medicare and Medicaid financing systems, and the effect that care of
acute illnesses has on the eventual need for long-term care. Additionally, states have
little control over the admission of a patient into a nursing home since the initial
portion of a nursing home stay is financed by Medicare (if a person needs skilled
care) or through a person’s own income and assets. Once a person no longer needs
skilled care or a person’s income and resources are exhausted, Medicaid may finance
nursing home stays.
One method to address the perceived the institutional bias is to control or
downsize institutional capacity. According to the Interim Project Report by the
Florida Senate, the state regulates the number of nursing home beds via the
Certificate of Need (CON) program. The program requires that health care providers
obtain state approval before offering new or expanded nursing home services. It is
designed to ensure that the supply of beds does not greatly exceed demand, and slows

CRS-45
the expansion of nursing homes.87 Senate Bill 1202 enacted on May 15, 2001, a
comprehensive long-term care reform bill, placed a moratorium on the construction
of nursing homes, with the intent to limit the increase in Medicaid nursing home
expenditures and invest the saved funds in community-based care (see earlier
description of the CON program under Trends in Institutional Care).
State officials and stakeholders indicated that the system should be changed so
that nursing homes are an exception rather than the rule. From their perspective,
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 in are danger of spending down their income
and assets and thereby establishing Medicaid eligibility. For instance, Florida has
implemented the Nursing Home Diversion Waiver program in selected counties to
provide home and community based services to persons who otherwise may seek
nursing home care.
Lack of Statewide Home and Community-Based Services System.
While Florida has made significant strides in developing initiatives to improve its
long-term care services, it still lacks a strong home and community-based system.
According to state officials and consumer advocates, consumers in Florida do not
have access to a single source of information about long-term care. Creating a
statewide system that is consumer friendly has been challenging. At present, the state
is experimenting with creating an eligibility access system that is integrated with an
information and referral system. The 211 pilot project88 is being implemented by
AHCA and DCF in Duval County where the eligibility determination process will be
merged with an information and referral system sponsored by the United Way of
North East Florida.
According to state officials and stakeholders, having several waivers to cover
different populations with different sets of eligibility criteria has further complicated
access to services. For instance, Florida has eleven discrete Medicaid waiver
programs each covering discrete populations leading to a categorical approach to
service delivery to the frail elderly and persons with disabilities.
They indicated that provider participation has been complicated by excessive
bureaucratic requirements such as separate enrollment in each waiver program and
a complex set of rules governing each waiver. The procedures for locating the
appropriate waiver or other service program and the administering agency, and trying
to fit needs into the prescribed waiver requirements, can be burdensome for clients.
According to a recent report presented to the State Legislature by the CARES
program, physicians know very little about community based long-term care, and
87 Florida Senate Interim Project Report 2002-136, Nov. 2001, p. 3.
88 The Federal Communication Commission (FCC) on July 21, 2000,designated the 3-digit
telephone number 2-1-1 for easy access to community human service information. Florida
is one of the states in the nation that has implemented a 2-1-1 program.

CRS-46
often recommend nursing home placement.89 Additionally, at the time long-term care
decisions are made, families are often in crisis and do not know that there may be
alternatives to institutional care.90
Fragmentation of Responsibilities for Long-Term Care. According to
state officials and stakeholders there is still too much fragmentation and duplication
in the administration of long-term care in the state. This fragmentation stems from
the multiple agencies that are responsible for administration and implementation of
long-term care at the state and local levels. While one agency is responsible for
determining functional eligibility, another agency is responsible for determining
financial eligibility. This makes coordination of services very paper–and staff–
intensive. According to a report published by the Office of Program Policy Analysis
and Government Accountability (OPPAGA) (an office of the Florida Legislature),
the “Medicaid waiver financial eligibility process can be labor-intensive and time-
consuming which may make it difficult for some frail elders to complete.” The
report further stated that 1,274 clients who had applied for Medicaid waiver program
financial eligibility in August 2001, had to wait an average of 5.9 months for their
eligibility to be determined.91 Moreover, according to the CARES report, due to the
time it takes for financial eligibility determination, “families are more willing to
place family members in nursing facilities from an acute care setting knowing
Medicare will pay the bills for the short term.”92
Most of the challenges are attributable to a lack of understanding or agreement
among the parties involved with respect to final administrative authority and
financing of coordinated programs. The report found that, given the complicated
administrative structure and many bureaucratic layers, the Department of Elder
Affairs had not been able to provide CCE lead agencies, area agencies on aging, and
local service providers with “clear guidelines and timely technical assistance to
enable them to effectively implement policy changes”93 of the long-term care system
in the state.
To address coordination issues, the Legislature established an Office of Long-
Term Care Policy housed in the Department of Elder Affairs as part of SB1276
signed into law on May 1, 2002. This office is charged with ensuring coordination
among agencies responsible for the long-term care continuum, and making
89 Comprehensive Assessment & Review for Long Term Care Services (CARES): A Report
to the Florida Legislature, Dec. 31, 2002, p. 20.
90 Ibid. p. 20.
91 Office of Program Analysis and Government Accountability, Justification Review
Services to Elders Program, Department of Elder Affairs. Report No.01-66, Dec. 2001, p.
22.
[http://www.oppaga.state.fl.us/reports/pdf/0166rpt.pdf].
92 Comprehensive Assessment & Review for Long-Term Care Services (CARES): A Report
to the Florida Legislature, Dec. 31, 2002, p. 20.
93 Office of Program Analysis and Government Accountability, Justification Review
Services to Elders Program, Department of Elder Affairs. Report No.01-66, Dec. 2001, p.
30. [http://www.oppaga.state.fl.us/reports/pdf/0166rpt.pdf].

CRS-47
recommendations to the executive agencies and the Legislature to increase quality
of care and use of non-institutional settings to provide care to the elderly. The Long-
Term Policy Advisory Council in the Office of Long-Term Care Policy presented its
first report to the Governor and the State Legislature in February 2003. According
to the report “fragmentation of services at all levels and among agencies creates
unnecessary delays for clients and duplicative functions for agencies.”94
As with long-term care services for the elderly, several agencies share
responsibilities for providing services for the disabled. There are 5 different agencies
that handle disability issues in Florida. Medicaid Services are handled by the Agency
for Health Care Administration; the Department of Health is responsible for the
licensing of healthcare workers; the state Department of Education provides
vocational rehabilitation and blind services; the Department of Elder Affairs is
responsible for disability issues with regard to elderly citizens in Florida; and the
Department of Children and Families (DCF) is responsible for administering the
Developmental Disabilities program for both children and adults.
Quality of Long-Term Care. Like many states, Florida has grappled with
issues related to the quality of care provided by nursing homes and assisted living
facilities. Quality of care was the basis for a large number of law suits filed against
nursing homes. The State Legislature accepted suggestions from the Task Force on
the Availability and Affordability of Long-Term Care, and during its 2002 session
passed Senate Bill 1276 which was signed in to law on May 1, 2002. Among its
provisions was the creation of a Managed Integrated Long-Term Care Pilot Program.
This program will test the feasibility of having a single entity coordinate the
continuum of state-funded programs for the elderly. In addition, the law provided for
establishing a Consumer Directed Care Program to provide elders with choices in
their long-term care, and a more direct role for the Department of Elder Affairs in the
Long-Term Care Ombudsman program. Another key piece of legislation was Senate
Bill 1202, a comprehensive long-term care reform bill. This bill significantly
affected the funding, operation, regulation, liability coverage requirements, and
litigation aspects of nursing homes and assisted living facilities (ALFs).
Long-Term Care Staffing. Perhaps the most notable provision of SB 1202
is the requirement for new staffing ratios in nursing homes and assisted living
facilities. The legislation directed the Agency for Health Care Administration to
adopt rules specifying a minimum staffing standard for certified nursing assistants
of 2.3 hours of direct care per resident per day beginning January 1, 2002; 2.6 hours
beginning January 1, 2003; 2.8 hours beginning January 1, 2004; and increasing to
2.9 hours beginning January 1, 2005. The nursing assistant staff ratio is never to fall
below one certified nursing assistant per 20 residents. A minimum licensed nursing
standard of 1.0 hour of direct resident care per resident per day is also established.
The licensed nursing staff ratio is never to fall below one licensed nurse per 40
residents. Each nursing home is required to document compliance with these staffing
standards and post the names of staff on duty daily.
94 Report of the Long-Term Care Policy Advisory Council, Report to Governor Jeb Bush
and the 2003 Florida Legislature, Feb. 1, 2003, p. 6.

CRS-48
The bill increases the minimum amount of civil penalties for all classes of
deficiencies. Penalties for class I deficiencies (deficiencies which present an
imminent danger to residents or guests or a substantial probability of death or
physical harm) are set at no less than $10,000, but cannot exceed $25,000 (previous
fines for these type of deficiencies were from $5,000 to $25,000). The agency must
levy such fines “notwithstanding the correction of the deficiency.” Penalties for class
II deficiencies (those that have a direct or immediate relationship to health, safety or
security of residents) are set at an amount no less than $5,000, not to exceed $10,000.
The penalty for a class III deficiency (an indirect or potential relationship to health,
safety, or security of residents) is set at no less than $1,000 not to exceed $2,500 for
each deficiency.
Another issue that faces the state is the Medicaid and Medicare reimbursement
methodologies that do not provide adequate incentives for staff retention. House Bill
1971 passed by the State Legislature in 1999 created a Panel on Medicaid
Reimbursement to make recommendations for Florida’s Medicaid reimbursement
plan. The Panel determined that quality of care for nursing home residents is likely
to be affected due to the difficulty providers are experiencing in hiring and retaining
staff, and improving the physical facilities.95
Waiting Lists for Home and Community-Based Care . Waiting List for
Frail Elderly and Disabled. According to the Office of Program Policy Analysis and
Government Accountability (OPPAGA) report, significant barriers to home and
community-based services have resulted in waiting lists for services. During SFY
2002, 69,482 applicants at risk for nursing homes placement were assessed by
CARES staff, and of those 23.5% of applicants were referred for waiver services.
According to the CARES Barrier Report for SFY2001, 2,232 clients who were
recommended for home or community-based placement could not receive such
services and were placed in nursing homes. Among the reasons attributed for this
situation include the following:

! many clients did not have caregivers to help them stay in the
community. Of the 2,232 clients for whom home and community-
based services were recommended, three-quarters did not have
caregivers and were subsequently placed in nursing homes;
! some persons were placed in nursing homes before home and
community-based services started. In FY2001, 8.7% of clients were
on waiting lists for waiver services, when they were placed in
nursing homes; and
! some individuals who applied for community based care needed
specialized services such as assisted living facilities that offer mental
health services. Of the 2,232 clients placed in nursing homes, 5.9%
were placed in such institutions because there was lack of
specialized community services.96
95 The Florida Senate, Interim Project Report 2001-025, Feb. 2001.
96 Office of Program Policy Analysis and Government Accountability Justification Review,
Services to Elders Program, Department of Elder Affairs, Report No. 01-66, Dec. 2001, p.
(continued...)

CRS-49
Waiting List for Persons with Mental Retardation and Developmental
Disabilities. The state has strongly committed itself to improving community-based
alternatives for those with mental retardation and developmental disabilities.
Disability advocates stated that when Governor Jeb Bush took office there was a
large number of pending law suits regarding waiting lists for services for those with
developmental disabilities. The number of Floridians with developmental disabilities
who were being fully served was less than 10,000. Instead of contesting these law
suits, the Governor proposed more funding to eliminate the waiting list. From 1999-
2002, state funding for developmental services increased by 94% to a total of $975
million.

However, the waiting list issue still remains. When more people came into the
program, there were not enough providers to meet the demand. The Legislature was
not pleased that the increase in funds was not eliminating the waiting lists. After the
events of September 11th 2001, and the economic recession, Governor Jeb Bush
requested all state agencies to cut back on spending due to a decline in state tax
revenue. The Developmental Disabilities program cut back by broadly defining
medical necessity and publishing a new service directory. Due to the vocal advocacy
of consumers, family members and advocacy organizations, the Governor expressed
his desire for a system redesign to address the issues facing the Developmental
Disabilities program. The Department of Children and Families is working with the
Agency for Health Care Administration on a viable long-term redesign of the service
delivery system that is consumer-directed and choice-based. The long-term redesign
also seeks to increase efficiency and flexibility in both administrative and
programmatic areas. The completed system redesign was scheduled for delivery
during July 2003.97
For the State Fiscal Year 2002-2003, Governor Bush has requested a large
amount of funds to reduce the waiting list for developmental disability services. The
Governor had requested a $90 million increase in funding for the Developmental
Disabilities program and the State Legislature appropriated $60 million. However,
according to consumer advocates, the waiting lists do not include people currently
residing in Intermediate Care Facilities (ICFs/MR) or state institutions who would
like to move out. Additionally, individuals who would like to move out of these
institutions are now at the bottom of the waiting list, and the general revenue funding
is not available to assist them.
96 (...continued)
17.
97 Department of Children and Families, Developmental Disabilities Program Office, E-
Bulletin , May 10, 2002. p. 1.
[http://www.myflorida.com/cf_web/myflorida2/healthhuman/ddp/].

CRS-50
Appendix 1. Major Home and Community-Based Long-Term Care Programs for the Elderly and
Persons with Disabilities in Florida
Functional eligibility
Financial eligibility
Monthly
income
limit/
Annual
annual
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
Aged/Disabled
Persons
Meet
DOEA,
300% of the
DCF
Adult
During State
Annual cost
DOEA
AHCA
Adult Waiver
age 60 or
nursing
CARES
federal SSI
companion,
Fiscal Year
per client
[1915 (c)]
older, or
facility
assessment
level ($1,656
adult day
(SFY)2002,
$5,272
age18 to
level-of-
units
in 2003)/
health care,
16,400 clients
Implemented
59 and
care criteria
$2,000 for an
attendant care,
were served by
statewide on
determined
as
individuala
case aide, case
the waiver. The
April 1, 1982
disabled
determined
management,
Maximum
according
by CARES
chore services,
allowable
to Social
consumable
number of
Security
medical
clients
standards.
supplies,
approved for
counseling,
the waiver is
environmental
35,652.
accessibility
adaptation,
escort, family
training,
financial risk
reduction,
health support,
home-
delivered
meals,

CRS-51
Functional eligibility
Financial eligibility
Monthly
income
limit/
Annual
annual
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
homemaker
and personal
care services,
nutrition,
personal
emergency
response
systems, pest
control,
physical risk
reduction,
physical
therapy,
respite care,
skilled
nursing,
specialized
medical
equipment and
supplies
a. Certain items are excluded, such as an individual’s home; up to $2,000 of house hold goods and personal effects; life insurance policies with a face value of $1,500 or less; and
automobile with value up to$4,500; and burial funds up to $1,500 among other things.
AHCA- Agency for Health Care Administration
DCF- Department of Children and Families
CARES- Comprehensive Assessment and Review of Long-Term Care Services
DOEA– Department of Elder Affairs

CRS-52
Functional eligibility
Financial eligibility
Monthly
income
No. of
limit/
persons
Annual
annual
enrolled/
cost cap
Target
Determined
resource
Determined
slots
(aggregate
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)
oversight
oversight
Nursing
Age 65 and
Dual Eligible
DOEA-
300% of
DCF
Adult
During
Annual cost
DOEA
AHCA
Home
over
for Medicaid
CARES
the federal
companion,
SFY2002,
per client
Diversion
(institutional
assessment
SSI level
adult day
1,177
$28,104
Waiver
care level)
units
($1,656 in
health, assisted
clients were
[1915(c)]
and
2003/
living,
served
Medicare.
$2,000 for
case
under the
The waiver
Live in the
an
management,
waiver. The
was first
pilot project
individuala
environmental
Maximum
implemented
areas of:
accessibility
allowable
on March
Orange,
and
number of
25, 1997.
Osceola,
adaptation,
clients
Seminole and
escort, family
approved
Brevard,
training,
for the
Palm Beach,
financial
waiver is
Martin,
assessment and
2,300
Okeechobee,
risk reduction,
Saint Lucie
home delivered
and Indian
meals,
River
homemaker,
counties
nutritional
assessment and
risk reduction,
personal care,
personal
emergency
response
systems,
respite care,
occupational,
physical and

CRS-53
Functional eligibility
Financial eligibility
Monthly
income
No. of
limit/
persons
Annual
annual
enrolled/
cost cap
Target
Determined
resource
Determined
slots
(aggregate
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)
oversight
oversight
speech
therapies,
home health
and nursing
facility
services.
a. Certain items are excluded, such as an individual’s home; up to $2,000 of house hold goods and personal effects; life insurance policies with a face value of $1,500 or less; and
automobile with value up to$4,500; and burial funds up to $1,500 among other things.
AHCA- Agency for Health Care Administration
DCF- Department of Children and Families
CARES- Comprehensive Assessment and Review of Long-Term Care Services
DOEA– Department of Elder Affairs

CRS-54
Functional eligibility
Financial eligibility
Monthly
income
limit/
Annual
annual
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
slots approved
individual)
oversight
oversight
Channeling
Age 65 or
Meet the
DOEA-
300% of
DCF
Adult day
During
Annual cost
DOEA
AHCA
Waiver
older
nursing
CARES
the federal
health care,
SFY2002,
per client
[1915(c)]
facility
assessment
SSI level
case
1,721 clients
$8,307
level-of-
units
($1,656 in
management,
were served
The waiver
care criteria
2003)/
chore
under the
was first
as
$2,000 for
services,
waiver. The
implemented
determined
an
companion
Maximum
in July 1,
by CARES.
individuala
services,
allowable
1985 in Dade
Have two or
counseling,
number of
and Broward
more unmet
environmental
clients
counties.
long term
accessibility
approved for
care service
adaptations,
the waiver is
needs
family training,
1,804.
financial
education and
protection
services, home
health aide
services,
occupational
therapy,
personal care
services,
personal
emergency
response
systems,
physical
therapy, respite
care, skilled

CRS-55
Functional eligibility
Financial eligibility
Monthly
income
limit/
Annual
annual
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
slots approved
individual)
oversight
oversight
nursing, special
home delivered
meals, special
drug and
nutritional
assessments,
special medical
supplies, and
speech therapy
a. Certain items are excluded, such as an individual’s home; up to $2,000 of house hold goods and personal effects; life insurance policies with a face value of $1,500 or less; and
automobile with value up to$4,500; and burial funds up to $1,500 among other things.
AHCA- Agency for Health Care Administration
DCF- Department of Children and Families
CARES- Comprehensive Assessment and Review of Long-Term Care Services
DOEA– Department of Elder Affairs

CRS-56
Functional eligibility
Financial eligibility
Monthly
income
limit/
Annual
annual
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
slots approved
individual)
oversight
oversight
Projects
Those
Diagnosed
DOEA/
300% of
DOEA/
Case
During SFY2002,
Annual cost
AHCA
AHCA
AIDS Care
with a
with AIDS;
CARES
the federal
CARES
management,
6,658 clients were
per client
Waiver
medical
determined
assessment
SSI level
units
chore
served under the
$3,719
[1915(c)]
diagnosis
disabled
units.
($1,656 in
determines
services,
waiver. The
of AIDS
according to
2003)/
level of
companion,
Maximum
The waiver
Social
$2,000 for
care.
day health
allowable number
was first
Security
an
Projects
care,
of clients approved
implemented
administration
individuala
AIDS Care
education
for the waiver is
statewide on
standards;
case
and support,
10,000.
November 1,
need and
manager
health
1989.
receive case
completes a
assessment,
management
needs
substance-
and have an
assessment.
abuse
enrolled PAC
treatment,
waiver case
home-
manager;
delivered
not be
meals,
enrolled in a
homemaker,
Medicaid
home
HMO or
modification,
Hospice
massage
program;
therapy,
have a Level
personal
of Care
care,
determination
personal
for risk of
emergency
hospitalization
response
or placement
system, pest
in a nursing
control,
facility;
physical
be able to
therapy,

CRS-57
Functional eligibility
Financial eligibility
Monthly
income
limit/
Annual
annual
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
slots approved
individual)
oversight
oversight
remain safely
respiratory
at home; and
therapy,
have
respite care,
completed
skilled care,
PAC waiver
specialized
enrollment
medical
application.
equipment
and supplies,
and
specialized
personal care
for foster
children
a. Certain items are excluded, such as an individual’s home; up to $2,000 of house hold goods and personal effects; life insurance policies with a face value of $1,500 or less; and
automobile with value up to$4,500; and burial funds up to $1,500 among other things.
AHCA- Agency for Health Care Administration
DCF- Department of Children and Families
CARES- Comprehensive Assessment and Review of Long-Term Care Services
DOEA– Department of Elder Affairs

CRS-58
Functional eligibility
Financial eligibility
Monthly
No. of
income
persons
Annual
limit/
enrolled/
cost cap
Target
Determined
resource
Determined
slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved,
individual)
oversight
oversight
Assisted
Age 60
Nursing facility
DOEA,
300% of the
DCF
Case
During
Annual cost
DOEA
AHCA
Living for
and older
level-of-care and
CARES
federal SSI
management,
SFY2002,
per client
the Elderly
Meet one or
assessment
level ($1,656
assisted living,
3,993 clients
$7,673
Waiver
more of the
units
in 2003)/
and if needed,
were served
[1915(c)]
following: 1.
$2,000 for an
incontinence
under the
require
individuala
supplies. The
waiver. The
The waiver
assistance with
components of
Maximum
was
four or more
assisted living
allowable
implemented
activities of
include:
number of
statewide on
daily living
attendant call
clients
February 1,
(ADLs). 2.
system,
approved for
1995.
require
attendant
the waiver is
assistance with
care, behavior
3,196.
three ADLs plus
management,
supervision or
chore,
administration of
companion
medication.
services,
3. require total
homemaker,
help with one or
intermittent
more ADLs. 4.
nursing,
have a diagnosis
medication
of Alzheimer’s
administration
disease or
(within the
another type of
ALF license),
dementia and
occupational
require
therapy,
assistance with
personal care,
two or more
physical
ADLs. 5. have a
therapy,
diagnosed
specialized
degenerative or
medical

CRS-59
Functional eligibility
Financial eligibility
Monthly
No. of
income
persons
Annual
limit/
enrolled/
cost cap
Target
Determined
resource
Determined
slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved,
individual)
oversight
oversight
chronic medical
equipment and
condition
supplies,
requiring
speech therapy
nursing services
that cannot be
provided in a
standard
ALF(Assisted
Living Facility),
but are available
in an ALF
licensed for
limited nursing
or extended
congregate care.
a. Certain items are excluded, such as an individual’s home; up to $2,000 of house hold goods and personal effects; life insurance policies with a face value of $1,500 or less; and
automobile with value up to$4,500; and burial funds up to $1,500 among other things.
ACHA- Agency for Health Care Administration
DCF- Department of Children and Families
CARES- Comprehensive Assessment and Review of Long-Term Care Services
DOEA– Department of Elder Affairs

CRS-60
Functional eligibility
Financial eligibility
Monthly
income
limit/
No. of persons
Annual
annual
enrolled/
cost cap
Target
Determined
resource
Determined
slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)
oversight
oversight
Traumatic
Those with
Be a client
DOEA
300% of
DCF
Assistive
During
Annual cost
DOEA
AHCA
Brain
brain or
of the Brain
CARES
the federal
technologies,
SFY2002, 147
per client
Injury/spinal
spinal cord
and Spinal
assessment
SSI level
attendant care,
clients were
$13,556
cord Injury
injuries
Cord Injury
units
($1,656 in
behavioral
served under
Waiver
ages 18
Program;
2003)/
programming,
the waiver. The
[1915(c)]
and over.
meet at least
$2,000 for
case
Maximum
level II care
an
management
allowable
criteria for
individuala
companion
number of
nursing
services,
clients
facilities
community
approved for
support
the waiver is
coordination,
200.
environmental
accessibility
adaptations, life
skills training,
personal
adjustment
counseling,
personal care,
and
rehabilitation
engineering
evaluation
a. Certain items are excluded, such as an individual’s home; up to $2,000 of house hold goods and personal effects; life insurance policies with a face value of $1,500 or less; and
automobile with value up to$4,500; and burial funds up to $1,500 among other things.
AHCA- Agency for Health Care Administration
DCF- Department of Children and Families
CARES- Comprehensive Assessment and Review of Long-Term Care Services
DOEA– Department of Elder Affairs

CRS-61
Functional eligibility
Financial eligibility
Monthly
income
No. of
limit/
persons
Annual
annual
enrolled/
cost cap
Target
Determined
resource
Determined
slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)
oversight
oversight
Adult Cystic
Those
Meet the
DOEA
300% of
DCF
acupuncture,
Enrollment
Not
DCF
AHCA
Fibrosis
diagnosed
nursing
CARES
the federal
adult
of
Applicable
Waiver
with Cystic
facility level-
assessment
SSI level
companion,
individuals
[1915(c)]
Fibrosis
of-care criteria
units
($1,656 in
adult day
for the
between ages
as determined
2003)/
health, chore
waiver is
Approved on
18-59 years.
by CARES
$2,000 for
service,
scheduled to
September 20,
an
counseling
begin
2002
individuala
(individual
January 1,
and family),
2004, and
durable
the
medical
approved
equipment,
number of
exercise
clients for
therapy,
the first,
massage
second and
therapy,
third year of
occupational
enrollment
therapy,
are 75,115,
personal care,
and 150
personal
respectively,
emergency
response
service,
physical
therapy,
prescribed
drugs,
respiratory
therapy,

CRS-62
Functional eligibility
Financial eligibility
Monthly
income
No. of
limit/
persons
Annual
annual
enrolled/
cost cap
Target
Determined
resource
Determined
slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)
oversight
oversight
respite care,
skilled
nursing,
specialized
medical
equipment and
supplies,
transportation,
and vitamins
and nutritional
supplements.
a. Certain items are excluded, such as an individual’s home; up to $2,000 of house hold goods and personal effects; life insurance policies with a face value of $1,500 or less; and
automobile with value up to$4,500; and burial funds up to $1,500 among other things.
AHCA- Agency for Health Care Administration
DCF- Department of Children and Families
CARES- Comprehensive Assessment and Review of Long-Term Care Services
DOEA– Department of Elder Affairs

CRS-63
Functional eligibility
Financial eligibility
Monthly
income
No. of
limit/
persons
Annual
annual
enrolled/
cost cap
Target
Determined
resource
Determined
slots
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
approved
individual)
oversight
oversight
Adult Day
Those age 75
Meet the
DOEA
300% of
DCF
Compre-
The program
Not
DOEA/
AHCA
Health Waiver
and older
nursing
CARES
the federal
hensive
plans to serve
applicable
AHCA
[1915(c)]
facility level-
assessment
SSI level
adult day
approximately
of-care criteria
units
($1,656 in
health care
130 clients in
as determined
2003)/
each of the
by CARES,
$2,000 for
three years it
reside in Lee
an
will be
or Palm Beach
individuala
operational.
county, and
reside with a
caregiver.
a. Certain items are excluded, such as an individual’s home; up to $2,000 of house hold goods and personal effects; life insurance policies with a face value of $1,500 or less; and
automobile with value up to$4,500; and burial funds up to $1,500 among other things.
AHCA- Agency for Health Care Administration
DCF- Department of Children and Families
CARES- Comprehensive Assessment and Review of Long-Term Care Services
DOEA– Department of Elder Affairs

CRS-64
Functional eligibility
Financial eligibility
Monthly
income
limit/
Annual
annual
No. of persons
cost cap
Determined
resource
Determined
enrolled/
(aggregate/
Admin.
Financial
Program
Target group
Criteria
by
limits
by
Services
slots approved
individual)
oversight
oversight
Consumer
Those
Adults
DOEA
300% of
DCF
Clients are
Total
Annual cost
DOEA/
AHCA
Directed Care
receiving
enrolled in the
CARES
the federal
given the
participation
per client
AHCA
[Section 1115
services under
Aged/
assessment
SSI level
oppor-
was limited to
$15,099
waiver under a
the
Disabled
units
($1,656 in
tunity to
6,000: 3,000
US Department
Aged/Disabled
Waiver and
2003)/
exchange
experimental
of Health and
waiver, or
TBI/SCI
$2,000 for
their
group members
Human
Traumatic
Waiver
an
traditional
and 3,000
Services
Brain
residing in the
individuala
waiver
control group
demonstration]
Injury/Spinal
following
services for
members.
Cord Injury
counties:
a cash
Enrollment for
(TBI/SCI)
Brevard,
option to
the program
waiver, or
Broward,
purchase
ended on June
Develop-
Charlotte,
services
30, 2002 and
mental
Collier, Dade,
directly
the total
Services
Hillsborough,
from a
number of
waiver.
Lee, Manatee,
provider of
participants
Martin,
their
was 2,080
Okeechobee,
choice.
Orange,

Osceola, Palm
Beach,
Pasco,
Pinellas, Polk,
Sarasota,
Seminole and
St. Lucie.
Adults
enrolled in the
Develop-
mental

CRS-65
Functional eligibility
Financial eligibility
Monthly
income
limit/
Annual
annual
No. of persons
cost cap
Determined
resource
Determined
enrolled/
(aggregate/
Admin.
Financial
Program
Target group
Criteria
by
limits
by
Services
slots approved
individual)
oversight
oversight
Services must
reside in the
above
mentioned
counties as
well as:
Calhoun,
Franklin,
Jefferson,
Liberty,
Madison,
Taylor,
Holmes,
Jackson,
Washington,
Alachua,
Bradford,
Columbia,
Dixie,
Gilchrist,
Hamilton,
Lafayette,
Levy, Putnam,
Suwannee,
Union,
DeSoto,
Glades,
Hendry,
Flagler,
Volusia,
Citrus,

CRS-66
Functional eligibility
Financial eligibility
Monthly
income
limit/
Annual
annual
No. of persons
cost cap
Determined
resource
Determined
enrolled/
(aggregate/
Admin.
Financial
Program
Target group
Criteria
by
limits
by
Services
slots approved
individual)
oversight
oversight
Hernando,
Lake, Sumter,
Marion,
Hardee,
Highlands,
Indian River
and Monroe.
a. Certain items are excluded, such as an individual’s home; up to $2,000 of house hold goods and personal effects; life insurance policies with a face value of $1,500 or less; and
automobile with value up to$4,500; and burial funds up to $1,500 among other things.
AHCA- Agency for Health Care Administration
DCF- Department of Children and Families
CARES- Comprehensive Assessment and Review of Long-Term Care Services
DOEA– Department of Elder Affairs

CRS-67
Functional eligibility
Financial eligibility
Monthly
income
limit/
Annual
annual
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
slots approved,
individual)
oversight
oversight
The
Those with
Age 3 years
DCF
300% of the
DCF
Adult day
During SFY2002,
Annual cost
DCF
AHCA
Developmental
Develop-
and older.
federal SSI
training, adult
24,418 clients
per client
Services (DS)
mental
Meet the
level
dental,
were served
$18,417
Waiver
Disabilities
level-of-care
($1,656 in
behavioral
under the waiver.
criteria for
2003)/
services, chore
The Maximum
Implemented on
intermediated
$2,000 for
services,
allowable number
April 1, 1982, as
care facilities
an
companion
of clients
a combined
for the
individuala
services,
approved for the
waiver with
mentally
dietitian,
waiver is 25,352
Aged/Disabled
retarded
environmental
Adult Services.
(ICF/MR);
modification,
In order to meet
and be
homemaker, in-
the needs of
enrolled in
home supports,
these two
the Develop-
non- residential
diverse
mental
support services,
client
Services
occupational
populations, the
Waiver
therapy,
waiver was split
personal care
into separate
assistance,
waiver programs
personal
on June 14,
emergency
1985.
response
systems,
physical
therapy, private
duty nursing,
psychological
services,
respiratory
therapy,

CRS-68
Functional eligibility
Financial eligibility
Monthly
income
limit/
Annual
annual
No. of persons
cost cap
Target
Determined
resource
Determined
enrolled/
(aggregate/
Admin.
Financial
Program
group
Criteria
by
limits
by
Services
slots approved,
individual)
oversight
oversight
residential
habilitation,
residential
nursing, respite,
skilled nursing
services, special
medical
equipment and
supplies, special
medical home
care, speech,
specialized
mental health
services, support
coordination,
supported
employment,
supported living
coaching,
therapeutic
massage, and
transportation
a. Certain items are excluded, such as an individual’s home; up to $2,000 of house hold goods and personal effects; life insurance policies with a face value of $1,500 or less; and
automobile with value up to$4,500; and burial funds up to $1,500 among other things.
AHCA- Agency for Health Care Administration
DCF- Department of Children and Families
CARES- Comprehensive Assessment and Review of Long-Term Care Services
DOEA– Department of Elder Affairs

CRS-69
Functional eligibility
Financial eligibility
Monthly
income
limit/
Annual
annual
No. of persons
cost cap
Determined
resource
Determined
enrolled/
(aggregate/
Admin.
Financial
Program
Target group
Criteria
by
limits
by
Services
slots approved,
individual)
oversight
oversight
Supported
Those with
Age 18 or older,
DCF
300% of
DCF
Adult day
During SFY2002,
Annual Cost
DCF
AHCA
Living
Developmental
be able to direct
the federal
training,
6 clients were
per client
Waiver
Disabilities
their own
SSI level
in-home
served under the
$5,477
Implemented
support in all but
($1,656 in
support
waiver. The
on October 1,
limited areas,
2003)/
services,
Maximum
1995.
participate in the
$2,000 for
coaching,
allowable number
planning and
an
supported
of clients
implementation
individuala
employment,
approved for the
of support
and
waiver is 200.
necessary to
transportation
manage their
households, and
participate in
community life,
meet the level of
care for
intermediate
care facilities for
the Mentally
Retarded
(ICF/MR).
a. Certain items are excluded, such as an individual’s home; up to $2,000 of house hold goods and personal effects; life insurance policies with a face value of $1,500 or less; and automobile
with value up to$4,500; and burial funds up to $1,500 among other things
AHCA- Agency for Health Care Administration
DCF- Department of Children and Families
CARES- Comprehensive Assessment and Review of Long-Term Care Services
DOEA– Department of Elder Affairs

CRS-70
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
Large state MR/DD or units operating
Residents with
Average per diem
1960-2001
Year facility opened
Year closed
MR/DD on 6/30/01
expenditures FY01($)
Florida State Hospital
1) Unit 29(MR Defendant Program
1977
95
225.25
2) Unit 27(Dually Diagnosed)
1976
29
289.43
Gulf Coast Center (Fort Meyers)
1960
309
260.13
Community of Landmark (Miami)
1966
2004/ 2005
213
322.00
North East Florida State Hospital (Mac Clenny)
1981
2000
Seguin Unit-Alachua Retarded Defendant
Center (Gainesville)
1989
32
274.93
Sunland Center (Marianna)
1961
319
222.20
Sunland Training Center (Orlando)
1960
1984
Sunland Training Center (Tallahassee)
1968
1983
Tacachale Community of Excellence (Formerly
Sunland of Gainesville)
1921
468
312.46
Source: Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2001. Research and Training Center on Community Living, Institute on
Community Integration/UCEED. University of Minnesota (June 2002)

CRS-71
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: Campbell, Paul R., 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
e x p l a n a t i o n o f t h e 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].