Long-Term Services and Supports: History of Federal Policy and Programs

December 20, 2023 R47881

Long-Term Services and Supports: History of
December 20, 2023
Federal Policy and Programs
Kirsten J. Colello
Long-term services and supports (LTSS) refer to a broad range of health and health-related
Specialist in Health and
services and supports needed by individuals who lack the capacity for self-care due to a physical,
Aging Policy
cognitive, or mental disability or condition. Often, an individual’s disability or condition results

in the need for hands-on assistance or supervision over an extended period of time.

In 2021, the United States spent an estimated $467.4 billion on post-acute care and long-term
services and supports (LTSS), representing 13.2% of the $3.6 trillion spent on personal health care. The majority of spending
on LTSS is funded by public programs (71.4%), with the Medicaid program being the largest public payer of LTSS in the
United States. In the absence of publicly funded LTSS, individuals must rely on private sources of funding (e.g., out-of-
pocket spending and private long-term care insurance [LTCI]), which accounted for 28.6% of LTSS expenditures in 2021.
The cost of obtaining paid assistance for LTSS, especially over an extended period of time, may far exceed the financial
resources of many individuals and their families. Large personal financial liabilities associated with paid LTSS can leave
individuals needing LTSS and their families at financial risk. Moreover, the vast majority of uncompensated LTSS is
provided by family members, friends, and neighbors. Thus, the above estimates of LTSS spending do not account for the
total cost of LTSS to the economy. Accounting for the opportunity cost of caregivers’ time would add an additional $86
billion to $151 billion to the total cost of LTSS, according to some estimates, depending on various assumptions about the
value of caregiver’s leisure time and forgone wages.
The Medicaid program is the largest public payer of LTSS in the United States. Medicaid is a joint federal-state program that
is administered and partially financed by each state with additional financial assistance from the federal government. As a
result, eligibility and covered services vary widely across the nation, particularly for LTSS. For example, states are required
to cover nursing facility services and home health services. However, most Medicaid home and community-based services
(HCBS), such as personal care, are optional services that states can choose to cover. Medicare, a federal program that pays
for covered health services for older adults (aged 65 and over) and for certain younger individuals with disabilities, finances
almost one-fifth of care in long-term care facilities (LTCFs) and home health care. Nevertheless, Medicare funding is
predominantly for post-acute skilled nursing care services and is not intended to cover care over an extended period of time.
The projected growth of the elderly population combined with large and increasing federal expenditures for health care
services has generated legislative interest among federal policymakers in the ways in which federal health care programs
cover LTSS, as well as alternative financing approaches. Policy solutions addressing the federal government’s role in
financing LTSS range from public to private to hybrid approaches that combine both public and private policies and
resources.
To help Congress understand the current financing landscape for LTSS and evaluate the range of LTSS financing options and
proposals, this report provides the history of federal policy development and the federal government’s role in financing
LTSS. This legislative history focuses largely on the Medicaid program and legislative actions to expand coverage of HCBS,
as well as actions to restrict Medicaid covered-LTSS to those with limited income and assets. The report also summarizes
various federal legislative efforts to encourage and expand the take-up of private LTCI, educate consumers about the need to
plan for their long-term care needs, and establish Achieving a Better Life Experience (ABLE) accounts as a new type of
LTSS savings vehicle that qualifying individuals with disabilities can use for disability-related expenses. The Appendix
includes a timeline of the legislation discussed in this report.
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Long-Term Services and Supports: History of Federal Policy and Programs

ong-term services and supports (LTSS) vary widely in their intensity and cost depending on
an individual’s underlying conditions, the severity of his or her care needs, the setting in
L which services are provided, and the caregiving arrangement (i.e., paid care versus
uncompensated care). The cost of obtaining paid assistance for these services, especially over a
long period of time, may far exceed the financial resources of many individuals and their
families.1 Among adults aged 50 and older, 60% feel “mostly” or “somewhat anxious” about
affording the cost of LTSS, such as a nursing home, assisted living facility, paid nurse or an aide
to assist them in advanced age.2 Large personal financial liabilities associated with paid LTSS can
leave individuals needing LTSS and their families at financial risk. Among older adults aged 65
with savings ranging from $171,000 to $1.8 million, those with greater long-term care needs were
much more likely to deplete their savings than those who did not need long-term care.3
What Are Long-Term Services and Supports?
Long-term services and supports (LTSS) refer to a broad range of health and health-related services and supports
needed by individuals who lack the capacity for self-care due to a physical, cognitive, or mental disability or
condition. Often, an individual’s disability or condition results in the need for hands-on assistance or supervision
over an extended period of time.
LTSS is provided to assist individuals in performing activities of daily living (ADLs), such as eating, bathing, dressing,
toileting, and transferring (from a bed to a chair, etc.). LTSS may also include assistance with instrumental activities
of daily living (IADLs), which facilitate independent living in the community, such as providing light housework,
laundry, meal preparation, transportation, and grocery shopping. Assistance may be in the form of hands-on
assistance (i.e., actually performing a task for an individual) or prompting an individual to perform the task by
himself or herself. For individuals with cognitive impairments, such assistance may also include supervising or
prompting an individual to perform the task.
LTSS includes a variety of services and supports that can be provided in an individual’s own home or in a
community-based setting such as an assisted living facility, referred to as Home and Community-Based Services
(HCBS). LTSS can also be provided in an institutional setting, such as a nursing home or Intermediate Care Facility
for Individuals with Intellectual Disabilities (ICF/ID).
In the United States, an estimated 14 million adults are in need of LTSS, and over half (56%) are
individuals aged 65 and older.4 Most individuals who need LTSS are cared for in their own homes
with the assistance of informal caregivers such as family members or friends. An estimated 10.6
million people provide uncompensated care to older adults, and, among those, 30% provide care
to individuals aged 85 and older.5 Moreover, there is unmet need among older adults who need
daily assistance. Analysis of Health and Retirement Study data from 2000 to 2021 found that

1 In 2021, the median annual cost of nursing home care was $94,900 for a semi-private room and $108,400 for a private
room. Assisted living facilities (ALFs) had a median cost of $54,000 annually, and the median annual cost for home
health aide services (based on industry guidance that assumes 44 hours of care per week) was an estimated $61,800.
See Genworth Financial, “Genworth 2021 Cost of Care Survey,” January 31, 2022, https://www.genworth.com/aging-
and-you/finances/cost-of-care.html.
2 Reed Abelson and Jordan Rau, “Facing Financial Ruin as Costs Soar for Elder Care,” New York Times and KFF,
Dying Broke: A KFF Health New-New York Time Project, November 14, 2023, https://kffhealthnews.org/news/article/
dying-broke-facing-financial-ruin-as-costs-soar-for-elder-care/.
3 Ibid.
4 Edem Hado and Harriet Komisar, Fact Sheet: Long-Term Services and Supports, AARP Public Policy Institute,
August 2019, https://www.aarp.org/content/dam/aarp/ppi/2019/08/long-term-services-and-support.doi.10.26419-
2Fppi.00079.001.pdf.
5 Jonathan Gruber and Kathleen M. McGarry, “Long-Term Care in the United States,” National Bureau of Economic
Research, Working Paper 31881, November 2023, http://www.nber.org/papers/w31881.
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among the 8 million older adults who reported dementia or difficulty with one or more daily
personal tasks, 3 million reported not receiving assistance.6
While the need for, use of, and costs associated with LTSS vary among individuals over their
lifespans, the probability of needing LTSS increases with age. It is estimated that more than half
(56%) of Americans who survive to age 65 develop a disability serious enough to need LTSS.7
Among those who develop a disability as an older adult, an estimated 10% will need care for less
than a year and an estimated 22% will need care for five or more years.8 The average duration of
LTSS needed is estimated to be 2.8 years overall, with the average duration of LTSS needed being
higher for women, at 3.2 years, than for men, at 2.3 years.9 As the population ages, the aggregate
demand for LTSS is expected to increase. In addition, advances in medical care and supportive
care are enabling younger persons with disabilities to live longer lives, requiring the delivery of
services and supports for longer periods of time.
The projected growth of the elderly population combined with large and increasing federal
expenditures for health care services has generated legislative interest among federal
policymakers in the ways federal health care programs cover LTSS, as well as alternative
approaches to current financing systems. As the largest public payer of LTSS in the United States,
Medicaid continues to be of interest and debate. For example, Medicaid effectively operates as a
safety net program by providing LTSS for low-income persons. It also operates as a de facto
public long-term care program in the absence of a comprehensive LTSS financing system in the
United States. In addition, broader equity and access issues regarding community integration of
publicly financed LTSS for individuals with disabilities continues to be a concern for federal
policymakers.
Policy solutions addressing the federal government’s role in LTSS financing range from public to
private to hybrid approaches that combine public and private spending. Some analysts suggest
that individuals should assume greater financial responsibility for their own LTSS before relying
on public funding to pay for care they could otherwise afford, suggesting the federal
government’s role should focus on expanding the purchase of private LTCI.10 Others propose that
federal health care financing programs, such as Medicare or Medicaid, should play a larger role in
covering LTSS and advocate for greater LTSS coverage and more revenue and spending for these
programs.11 Some have advocated for new public financing approaches that would provide

6 Reed Abelson and Jordan Rau, “Facing Financial Ruin as Costs Soar for Elder Care,” New York Times and KFF,
Dying Broke: A KFF Health New-New York Time Project, November 14, 2023, https://kffhealthnews.org/news/article/
dying-broke-facing-financial-ruin-as-costs-soar-for-elder-care/.
7 U.S. Department of Health and Human Services (HHS), Office of the Assistant Secretary for Planning and Evaluation
(ASPE), Office of Behavioral Health, Disability, and Aging Policy, Projections of Risk of Needing Long-Term Services
and Supports at Ages 65 and Older, ASPE Issue Brief, January 2021, https://aspe.hhs.gov/sites/default/files/private/
pdf/265136/LTSSRisk.pdf.
8 Ibid.
9 Ibid.
10 U.S. Department of the Treasury, “Long-Term Care Insurance: Recommendations for Improvement of Regulation:
Report of the Federal Interagency Task Force on Long-Term Care Insurance,” August, 2020, https://home.treasury.gov/
system/files/136/Report-Federal-Interagency-Task-Force-Long-Term-Care-Insurance.pdf.
11 U.S. House Energy and Commerce Committee, “Pallone Unveils Proposal For Medicare Long-Term Care Benefit,”
May 2, 2018, https://democrats-energycommerce.house.gov/newsroom/press-releases/pallone-unveils-proposal-for-
medicare-long-term-care-benefit; CBO analysis of single-payer health care systems with and without LTSS based on
the Medicare fee-for-service program, see Burns, Alice and Jaeger Nelson, “Policy Alternatives for Long-Term
Services and Supports,” Presentation to the National Tax Association, Congressional Budget Office, November 19,
2021, https://www.cbo.gov/system/files/2021-11/57451-LTSS.pdf; CBO analysis of the Build Back Better Act (H.R.
5376), as passed by the House of Representatives at Congressional Budget Office, “Economic Effects of Expanding
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catastrophic coverage to protect against high LTSS costs.12 Still others have offered various
hybrid approaches that combine new public financing programs with private insurance
approaches such as a beneficiary-financed Medicare supplemental benefit.13 In the absence of a
comprehensive approach to addressing the nation’s LTSS financing challenges, several states
have established their own financing programs and initiatives.14
To help Congress understand the current financing landscape for LTSS and evaluate both public
and private LTSS financing options and proposals, this report provides the history of the federal
government’s role in financing LTSS. This legislative history largely focuses on the Medicaid
program and legislative actions to expand coverage of home and community-based services
(HCBS), as well as actions to restrict Medicaid covered-LTSS to those with limited income and
assets. The report then summarizes various federal legislative efforts to encourage and expand the
take-up of private long-term care insurance (LTCI), educate consumers about the need to plan for
their long-term care needs, and establish a new type of LTSS savings vehicle that qualifying
individuals with disabilities can use for disability-related expenses. A timeline of the legislation
discussed in this report is included in the Appendix.
For More Information on Long-Term Services and Supports (LTSS)
This report provides background and context for the summarized LTSS provisions in enacted legislation. CRS
products and other resources are cited throughout this report, but select CRS products are listed below as
particularly relevant for further information:
•
CRS In Focus IF10427, Overview of Long-Term Services and Supports
•
CRS In Focus IF10343, Who Pays for Long-Term Services and Supports?
•
CRS Report R43328, Medicaid Coverage of Long-Term Services and Supports
•
CRS Report R46111, Medicaid Eligibility: Older Adults and Individuals with Disabilities
•
CRS In Focus IF11545, Overview of Federally Certified Long-Term Care Facilities
•
CRS In Focus IF11544, Overview of Assisted Living Facilities
•
CRS In Focus IF11614, Long-Term Care Insurance: Overview
Role of Public Financing in LTSS
With the enactment of Titles XVIII (Medicare) and XIX (Medicaid) of the Social Security Act in
1965, public financing for post-acute or rehabilitative care and LTSS in long-term care facilities
(LTCFs) became part of the U.S. health care delivery system. Over time, states and the federal
government became the largest payers of LTSS. In 2021, the United States spent an estimated
$467.4 billion on post-acute care and LTSS, representing 13.2% of the $3.6 trillion spent on
personal health care.15 The majority of spending on LTSS is funded by public programs (71.4%),

Home- and Community-Based Services in Medicaid,” November 2021, https://www.cbo.gov/system/files/2021-11/
57632-Medicaid.pdf.
12 Marc Cohen et al., “A New Public-Private Partnership: Catastrophic Public and Front-End Private LTC Insurance,”
https://www.urban.org/research/publication/new-public-private-partnership-catastrophic-public-and-front-end-private-
ltc-insurance; see also the Well-Being Insurance for Seniors to be at Home Act, or the “WISH Act,” H.R. 4289 (117th
Congress).
13 Nora Super et al., Innovative Strategies to Finance and Deliver Long-Term Care, Wharton Pension Research
Council Working Papers. 687, July 28, 2020, https://repository.upenn.edu/prc_papers/687; Bipartisan Policy Center,
“Financing Long-Term Services and Supports: Seeking Bipartisan Solutions in Politically Challenging Times,” July
2017, https://bipartisanpolicy.org/report/financing-long-term-services-and-supports/.
14 Marc A. Cohen et al., Learning from New State Initiatives in Financing Long-Term Services and Supports, July
2020, http://www.advancingstates.org/sites/nasuad/files/State-LTSS-Financing-Full-Report-July-2020.pdf.
15 CRS analysis of National Health Expenditure Account (NHEA) data obtained from the Centers for Medicare &
(continued...)
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with the Medicaid program being the largest public payer of LTSS (see Figure 1). In 2021, over
44.3% of LTSS was financed by the Medicaid program (combined federal and state spending).16
Over the past 20 years, the share of public LTSS spending has increased (from 66.8% in 2001 to
71.4% in 2021), primarily due to increases in the proportion of Medicare funding.
Figure 1. Long-Term Services and Supports Spending, by Payer, 2021

Source: CRS analysis of National Health Expenditure Account (NHEA) data obtained from the Centers for
Medicare & Medicaid Services, Office of the Actuary, prepared November 2022.
Notes: For more information, see CRS In Focus IF10343, Who Pays for Long-Term Services and Supports?
Because the vast majority of LTSS is provided by uncompensated caregivers such as family
members, friends, and neighbors, these figures do not account for the total cost of LTSS to the
economy. Researchers estimating the opportunity cost of uncompensated caregivers’ time found
that the value of this care ranged from $86 billion to $151 billion, depending on various
assumptions about leisure time and forgone wages.17
LTSS expenditures also make up a growing portion of the U.S. economy, rising from less than 1%
of gross domestic product (GDP) in 1990 to more than 1.5% by 2011.18 Since that time, LTSS
expenditures as a percentage of GDP have remained relatively flat, possibly due to policies and
programs that have expanded access to less costly interventions that focus on care at home and in
the community while restricting public program eligibility to those with low incomes and asset
levels.
As the largest public LTSS payer, the joint federal-state Medicaid program is administered and
partially financed by each state with additional financial assistance from the federal
government.19 As a result, eligibility and covered services vary widely across the nation,
particularly for LTSS. States are required to cover certain state plan services (mandatory services)
and may choose to cover additional services (optional services). For example, states are required
to cover nursing facility services and home health services, while most Medicaid HCBS (e.g.,
personal care) are optional services that states can choose to cover.20 Medicare, a federal program
that pays for covered health services for older adults (aged 65 and over) and for certain younger

Medicaid Services (CMS), Office of the Actuary, prepared November 2022. For more information, see CRS In Focus
IF10343, Who Pays for Long-Term Services and Supports?
16 Ibid.
17 Jonathan Gruber and Kathleen M. McGarry, “Long-Term Care in the United States,” National Bureau of Economic
Research, Working Paper 31881, November 2023, http://www.nber.org/papers/w31881.
18 Ibid.
19 CRS Report R43357, Medicaid: An Overview.
20 States are required to cover nursing facility services for beneficiaries aged 21 and over under their Medicaid plans.
States have the option to cover nursing facility services for beneficiaries under age 21. According to CMS, all states
provide this optional service. For more information see, CMS, “Nursing Facilities,”
https://www.medicaid.gov/medicaid/long-term-services-supports/institutional-long-term-care/index.html.
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individuals with disabilities, finances almost one-fifth of care in LTCFs and home health care.21
However, Medicare funding is predominantly for post-acute skilled nursing care services and is
not intended to cover care over an extended period of time.22
Individuals who are not eligible for publicly funded LTSS must rely on private sources of
funding, which accounted for 28.6% of LTSS expenditures in 2021 (see Figure 1).23 The largest
component of private spending is out-of-pocket spending, followed by private long-term care
insurance (LTCI). Individuals who seek paid LTSS but do not qualify for public assistance or do
not have private LTCI must pay for these services directly out-of-pocket or rely on family and
friends to provide needed care. Private LTCI provides some financial protection against the risk
of the potentially high cost of LTSS.
Private LTCI policies can take different forms, from stand-alone or traditional LTCI policies to
linked benefit products, also known as hybrid products, that combine life insurance or an annuity
with long-term care coverage. Generally, the types of services covered under a LTCI policy are
not covered under health insurance. And, unlike most health insurance policies, LTCI policies are
subject to underwriting, which means that individuals who have preexisting conditions can be
denied coverage or offered a policy with a high premium. As of 2020, about 7.5 million
Americans have some LTCI coverage from either traditional or linked-benefit products,
representing a small fraction of the potential market.24
The LTCI market has changed significantly over the past two decades by becoming more
concentrated, with fewer companies selling traditional LTCI. Over the past two decades, annual
LTCI premiums in the stand-alone market have increased significantly for both current and new
policyholders raising concerns about future market stability. For example, the Federal Long-Term
Care Insurance Program (FLTCIP) for active and retired federal workers and eligible family
members was suspended in 2022 for new enrollee applications and to assess premium rates for
current policyholders. At the same time, linked-benefit products have become more popular, with
the number of in-force policies at 600,000 in 2019 and growing annually.25
Medicaid and LTSS Coverage
One important issue for Medicaid LTSS coverage is its perceived bias in favor of institutional
care. The original 1965 Medicaid law established that eligible Medicaid beneficiaries are entitled
to nursing facility care. However, increasing expenditures for institutional care and growing
public demand for community-based alternatives spurred congressional action over time. This led
to additional authority for states, as well as federal payment incentives, to expand state Medicaid

21 CRS Report R40425, Medicare Primer.
22 Generally, Medicare covers up to 100 days of post-hospital care for skilled nursing facility services on a daily basis
(after a three-day hospital stay). There is no beneficiary cost-sharing for the first 20 days. Days 21-100 are subject to a
daily coinsurance charge of up to $200; see https://www.medicare.gov/coverage/skilled-nursing-facility-care.html.
23 CRS analysis of National Health Expenditure Account (NHEA) data obtained from CMS, Office of the Actuary,
prepared November 2022.
24 American Association for Long-Term Care Insurance, 2020, https://www.aaltci.org/long-term-care-
insurance/learning-center/ltcfacts-2020.php#2020total. For more information on long-term care insurance, see CRS In
Focus IF11614, Long-Term Care Insurance: Overview.
25 American Association for Long-Term Care Insurance, “Number of Linked-Benefit Long-Term Care Insurance
Policies In-Force Grows,” https://www.aaltci.org/news/long-term-care-insurance-association-news/number-of-linked-
benefit-long-term-care-insurance-policies-in-force-grows.
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programs HCBS offerings, often referred to as “rebalancing.”26 These legislative activities were
also prompted by the U.S. Supreme Court decision in Olmstead v. L.C.,27 which held that the
institutionalization of people who could be cared for in community settings was a violation of
Title II of the Americans with Disabilities Act (ADA).28 The following section describes
legislative activity that established Medicaid and its coverage requirements for nursing facility
services and home health, as well as various legislative efforts over time to provide additional
coverage and financing for HCBS.
Nursing Facility Services
Prior to the enactment of Medicaid in 1965, homes for the aged and other public institutions were
financed by a combination of direct payments made by individuals from their Old-Age Assistance
benefits29 and vendor payments made by states with federal matching payments on behalf of
individuals.30 In 1960, legislation established the Kerr-Mills Medical Assistance to the Aged
program (P.L. 86-778), which allowed states to provide medical services, including skilled
nursing care, to persons who were not eligible for Old-Age Assistance cash payments, thereby
expanding the covered population.31
In 1965, when Kerr-Mills was incorporated into the new federal-state Medicaid program,
legislation to provide an entitlement to skilled nursing facility care for beneficiaries aged 21 and
older was enacted, requiring states to offer this service under the expanded program.32 This
legislation gave skilled nursing facility care the same priority status as hospital and physician
services. Subsequent amendments allowed states to provide care in “intermediate care facilities”
for persons who did not need skilled nursing facility care but needed assistance beyond room and
board alone.33 In 1987, legislation was enacted to eliminate the distinction between skilled
nursing facilities and intermediate care facilities in the Medicaid program (effective in 1990).
Medicaid law now refers collectively to these settings as nursing facilities (NFs).34

26 CMS, Long-Term Services and Supports Rebalancing Toolkit, November 2020, https://www.medicaid.gov/medicaid/
long-term-services-supports/downloads/ltss-rebalancing-toolkit.pdf.
27 527 U.S. 581 (1999).
28 For more information on the ADA, see CRS In Focus IF12227, The Americans with Disabilities Act: A Brief
Overview.
29 Enacted in 1935 under Title I of the Social Security Act (P.L. 74-271), Old-Age Assistance was a federal-state
program that provided payments to needy persons aged 65 or older. Legislation was enacted to replace the Old-Age
Assistance program, along with two other public assistance programs, with the federal Supplemental Security Income
(SSI) program in the 50 states and Washington, DC, in 1972 (effective in 1974). See Herman F. Grundman, “Adult
Assistance Programs Under the Social Security Act,” Social Security Bulletin, vol. 48, no. 10 (October 1985),
https://www.ssa.gov/policy/docs/ssb/v48n10/v48n10p10.pdf.
30 Vivian Norman, “Federal Participation in Vendor Payments for Medical Care,” Social Security Bulletin, vol. 15, no.
12 (December 1952), https://www.ssa.gov/policy/docs/ssb/v15n12/v15n12p8.pdf; Kathryn Goodwin, “Twenty-five
Years of Public Assistance,” Social Security Bulletin, vol. 23, no. 8 (August 1960), https://www.ssa.gov/policy/docs/
ssb/v23n8/v23n8p31.pdf#page=4.
31 For a history from 1935 to 1967, see Advisory Commission on Intergovernmental Relations, Intergovernmental
Problems in Medicaid, Washington, DC, September 1968, https://babel.hathitrust.org/cgi/pt?id=
umn.31951d02881465u&seq=19.
32 Social Security Amendments of 1965 (P.L. 89-97). The term intermediate care facilities is still used to refer to
residential facilities licensed and certified by Medicaid as Intermediate Care Facilities for Individuals with Intellectual
Disability (ICF/IDs).
33 Act to Amend Title II of the Social Security Act, December 28, 1971 (P.L. 92-223).
34 Omnibus Budget Reconciliation Act of 1987 (P.L. 100-203).
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These early legislative developments helped stimulate growth in the nursing home industry. A
significant increase in the number of nursing homes occurred between 1960 and 1970. Over that
period, the number of nursing homes in the United States more than doubled, from around 9,600
to almost 23,000, and the number of beds more than tripled, from 331,000 to more than 1
million.35 Since 1970, the number of nursing homes nationwide has declined, but the number of
beds has increased. As of September 2023, nearly 15,000 nursing homes participated in Medicare
or Medicaid.36 Of this total, 94% of nursing homes were dually certified to participate in both
Medicare and Medicaid, 4% were certified as Medicare only, and 2% were certified as Medicaid
only. A daily average of 1,202,855 individuals resided in a nursing home.37
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Home and Community-Based Services
Home care services also received congressional attention in Medicaid’s original authorizing
statute. Under the 1965 law, home health care was established as one of the optional services that
states could provide. In 1968, three years after Medicaid was established, legislation was
amended that required states to provide home health care to persons entitled to skilled nursing
facility care as part of their state Medicaid plans.38 Over time, states were authorized to cover
other types of home and community-based services (HCBS) as optional benefits under the
Medicaid state plan, which is the agreement between a state and the federal government that
describes how that state will administer its Medicaid program. For example, the optional personal
care benefit was first available in 1978 through federal regulation.39 Subsequent legislative efforts
added an optional case management benefit in 1986, enabling states to make improvements in the
management of care for their LTSS beneficiaries and other groups.40
Authorizing Medicaid HCBS Waiver Programs
During the 1970s, the U.S. Department of Health, Education and Welfare (HEW, now the
Department of Health and Human Services [HHS]) considered alternatives to nursing home care
through various federal research and demonstration efforts.41 These efforts were undertaken not
only to find ways to offset the high cost of nursing facility care, but also to respond to older adults
and individuals with disabilities who desired to remain in their homes and in community-based
settings rather than in institutions. In 1981, Congress took significant legislative action to expand
HCBS when it authorized the Medicaid Section 1915(c) of the Social Security Act (SSA), Home
and Community-Based Services (HCBS) Waiver Program in response to general concerns about

35 U.S. Congress, Senate Special Committee on Aging, Developments in Aging, 1970, 92nd Cong., 1st sess., S. Rpt. 92-
46, February 16, 1970, Washington, DC, p. 42, cited from the American Nursing Home Association Fact Book, 1969-
1970, https://www.aging.senate.gov/imo/media/doc/reports/rpt171.pdf#page=69.
36 CRS analysis of CMS, Nursing Home Compare, as of September 1, 2023, accessed October 12, 2023, available at
https://data.cms.gov/provider-data/dataset/4pq5-n9py.
37 Ibid.
38 Social Security Amendments of 1967 (P.L. 90-248).
39 Provided first in federal regulation (43 Federal Register 45228, September 29, 1978), legislation to add personal care
to the list of optional services specified in the Medicaid statute was enacted under the Omnibus Budget Reconciliation
Act of 1993 (P.L. 103-66). Personal care services include assistance with performing activities of daily living (ADLs)
and instrumental activities of daily living (IADLs). Assistance may be in the form of hands-on assistance (i.e., actually
performing a task for an individual) or prompting an individual to perform the task by himself or herself. For
individuals with cognitive impairments, such assistance may also include supervising or prompting an individual to
perform the task.
40 The Consolidated Omnibus Reconciliation Act of 1985 (P.L. 99-272), effective on enactment (April 7, 1986).
41 U.S. General Accounting Office, Home Health Care Benefit Under Medicare and Medicaid, July 9, 1974,
https://www.gao.gov/products/b-1640313-35 (now the Government Accountability Office [GAO]).
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the lack of federal funding for noninstitutional LTSS.42 The HCBS waiver program also
responded to specific concerns that Medicaid provided far greater support for nursing facility care
than home and community-based care.
Medicaid HCBS waiver program coverage allows states to waive certain Medicaid statutory
requirements under the state plan to provide services that are not specified in Medicaid federal
statute. Under the HCBS waiver program, states may choose to cover certain HCBS under one or
more waiver programs subject to the terms and conditions of the waiver agreement and with
approval from the Secretary of Health and Human Services. Prior to 1981, many of the nonskilled
personal care and supportive services needed by chronically impaired persons to remain in the
community were not covered under the Medicaid state plan. With approved HCBS waiver
programs, states were permitted to waive certain Medicaid state plan requirements to allow
coverage of a wide variety of nonmedical, social, and supportive services designed to assist
individuals with independent living.
Community Integration: The Olmstead Decision
In 1999, the U.S. Supreme Court ruled on a landmark case for individuals with disabilities:
Olmstead v. L.C.43 The Court held that institutionalization of people who could be cared for in
community settings was a violation of Title II of the Americans with Disabilities Act (ADA).44
This case prompted federal administrative and legislative activities to provide expanded HCBS to
persons with disabilities. Since this time, every state has taken up either the SSA Section 1915(c)
HCBS waiver program option, or a comparable waiver under the authority of SSA Section 1115
(research and demonstration waivers), to offer HCBS to certain LTSS participants. To help states
transform their Medicaid LTSS delivery systems toward HCBS, Congress in FY2001 provided
appropriated funding for the Real Choice Systems Change Grants for Community Living
Program. This program awarded grants to states to transform their Medicaid LTSS delivery
systems. CMS awarded over 350 grants to states between FY2001 and FY2010, for a total of
approximately $288.6 million.45
Providing Additional Medicaid HCBS State Plan Options
In response to pressure from states and other stakeholders for additional ways to expand Medicaid
HCBS without the use of a waiver and to meet the community integration mandate under the
Olmstead decision, federal lawmakers established two optional state plan Medicaid benefits under
the Deficit Reduction Act of 2005 (DRA; P.L. 109-171), thereby providing states with additional
statutory authority to provide HCBS. SSA Section 1915(i) gave states the authority under their
state plan to cover new waiver-like HCBS for certain eligible individuals without requiring a
Secretary-approved waiver for this purpose. The DRA also established a state plan option under a

42 Omnibus Budget Reconciliation Act of 1981 (P.L. 97-35).
43 527 U.S. 581 (1999).
44 Specifically, the 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 is appropriate, the community setting is not opposed by the individual with a disability, and the
placement can be reasonably accommodated by the state. A January 2000 Health Care Financing Administration (now
Centers for Medicare & Medicaid Services, CMS) notice to state Medicaid directors indicated that the decision was
applicable to all individuals with disabilities, not just those with mental disabilities. See https://downloads.cms.gov/
cmsgov/archived-downloads/smdl/downloads/smd011400c.pdf.
45 Archived version of CMS, “Real Choice Systems Change Grant Program (RCSC),” https://web.archive.org/web/
20200411113934/https://www.medicaid.gov/medicaid/long-term-services-supports/real-choice-systems-change-grant-
program/index.html.
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new SSA Section 1915(j) to provide states with the authority to offer self-directed personal
attendant services (PAS), with features such as individual budgets and the ability to purchase
nontraditional goods and services. The DRA also included certain case management and targeted
case management reforms that further defined these services under Medicaid.46
With limited take-up of HCBS state plan options under the DRA and continued calls for
additional incentives for states to offer HCBS, Congress helped to enact new and revised HCBS
authority under the Patient Protection and Affordable Care Act (ACA, P.L. 111-148, as amended).
The ACA created a new LTSS state plan option under Medicaid for states to increase HCBS
coverage. This optional benefit, the Community First Choice (CFC) state plan option under SSA
Section 1915(k), authorizes states to receive an increase to the Federal Medical Assistance
Percentage (FMAP) and to offer personal attendant services and supports to assist eligible
individuals accomplish daily personal care activities and health-related tasks.47 In an effort to
expand state participation, the ACA also amended the HCBS state plan option established under
the DRA to offer additional flexibilities similar to Section 1915(c) HCBS waiver programs.
Incentivizing HCBS Through Financing and Demonstration Programs
In addition to offering states additional statutory authority and flexibility to cover HCBS in their
Medicaid programs, new demonstration programs were established to increase HCBS access and
coverage and to provide grant funding and other financing incentives to states for these activities.
Beginning in 2006, the DRA established and appropriated a total of $1.75 billion in funding
through FY2011 for the Money Follows the Person (MFP) Rebalancing Demonstration Program.
The MFP program provided competitive grants to states to transition Medicaid participants who
reside in institutional settings that provide LTSS, such as nursing facilities, into community-based
settings.48
Since the passage of the DRA, the MFP program has been extended with additional mandatory
funding under the ACA, as well as through subsequent legislation to extend certain health care-
related provisions scheduled to expire since enactment. These expiring provisions are portions of
law that are time-limited and will lapse once a statutory deadline is reached, absent further
legislative action. Most recently, the Consolidated Appropriations Act, 2023 (P.L. 117-328),

46 To this end, CMS issued an interim final rule governing the use and claiming of Medicaid case management services.
It became effective March 3, 2008; HHS, CMS, “Medicaid Program; Optional State Plan Case Management Services,”
Interim Final Rule, 72 Federal Register 68077-68093, December 4, 2007, https://www.federalregister.gov/documents/
2007/12/04/07-5903/medicaid-program-optional-state-plan-case-management-services. This rule was partially
rescinded under over concern that certain provisions may restrict beneficiary access and limit state flexibility for case
management services, see HHS, CMS, “Medicaid Program: Rescission of School-Based Administration/
Transportation Final Rule, Outpatient Hospital Services Final Rule, and Partial Rescission of Case Management
Interim Final Rule,” 74 Federal Register 31183-31196, June 30, 2009, https://www.federalregister.gov/documents/
2009/06/30/E9-15345/medicaid-program-rescission-of-school-based-administrationtransportation-final-rule-outpatient.
47 CMS issued a final rule on the CFC Option; see HHS, CMS, “Medicaid Program; Community First Choice;
Proposed Rule,” 77 Federal Register 26362-26406, May 7, 2012, https://www.federalregister.gov/documents/2012/05/
07/2012-10294/medicaid-program-community-first-choice-option. The rule did not finalize requirements regarding
CFC settings; these requirements were finalized in a subsequent rule published on January 16, 2015; see HHS, CMS,
“Medicaid Program; State Plan Home and Community-Based Services, 5-Year Period for Waivers, Provider Payment
Reassignment, and Home and Community-Based Setting Requirements for Community First Choice and Home and
Community-Based Services (HCBS) Waivers; Final Rule,” 79 Federal Register 2948-3039, January 16, 2014,
https://www.federalregister.gov/documents/2014/01/16/2014-00487/medicaid-program-state-plan-home-and-
community-based-services-5-year-period-for-waivers-provider.
48 For more information, see CRS In Focus IF11839, Medicaid’s Money Follows the Person Rebalancing
Demonstration Program.
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extends the MFP program and appropriates $450 million in federal funding for each of FY2024
through FY2027, for a total of $1.8 billion for competitive grants to states.49
In addition to extending MFP, the ACA also established a new four-year incentive payment grant
program, referred to as the Balancing Incentive Payments (BIP) Program. The BIP program
authorized CMS to provide incentive payment grants to qualifying state Medicaid programs for
increasing their share of LTSS spending on HCBS while reducing their spending on LTSS
institutional care. The aggregate amount of incentive payments made by the HHS Secretary under
the BIP program to states was not to exceed $3 billion over the BIP period, which began October
1, 2011, and ended on September 30, 2015.
More recently, in an effort to provide additional support to states for Medicaid HCBS during the
COVID-19 pandemic, the American Rescue Plan Act of 2021 (ARPA, P.L. 117-2) temporarily
increased the FMAP rate for Medicaid HCBS expenditures by 10 percentage points for states that
met the requirements during the program improvement period (i.e., April 1, 2021, through March
31, 2022).50
Medicaid and LTSS Eligibility
Medicaid is intended to provide a safety net for those who cannot afford to pay the high cost of
health care. Medicaid eligibility for adults aged 65 and over (i.e., aged) and individuals who are
blind or disabled is of interest to lawmakers primarily for two reasons: (1) these groups are more
likely to need LTSS, and (2) they account for a large share of Medicaid spending.51 The
Supplemental Security Income (SSI) program rules, which include both an income and a resource
or asset test, are the foundation of Medicaid eligibility for older adults and individuals with
disabilities under mandatory and optional eligibility pathways.52 In addition, there are financial
eligibility rules for receipt of Medicaid-covered LTSS that allow states to extend eligibility to
those with incomes above the federal poverty level and to exclude certain assets in order to help
them qualify for covered services.53 Other Medicaid provisions seek to recover the costs
associated with Medicaid LTSS through estate recovery programs.54 Advocates argue that

49 For more information, see CRS Report R47821, Consolidated Appropriations Act, 2023 (P.L. 117-328): Medicaid
and CHIP Provisions.
50 For more information, see CRS Report R46777, American Rescue Plan Act of 2021 (P.L. 117-2): Private Health
Insurance, Medicaid, CHIP, and Medicare Provisions. Also see letter from Anne Marie Costello, Acting Deputy
Administrator and Director, HHS, CMS, to State Medicaid Directors, May 13, 2021, “SMD # 21-003 RE:
Implementation of American Rescue Plan Act of 2021 Section 9817: Additional Support for Medicaid Home and
Community-Based Services during the COVID-19 Emergency,” at https://www.medicaid.gov/federal-policy-guidance/
downloads/smd21003.pdf.
51 Medicaid and CHIP Payment and Access Commission (MACPAC), “Exhibit 20. Distribution of Medicaid
Enrollment and Benefit Spending by Users and Non-Users of Long-Term Services and Supports, FY 2021,”
MACSTATS: Medicaid and CHIP Data Book, December 2022, https://www.macpac.gov/wp-content/uploads/2023/10/
EXHIBIT-20.-Distribution-of-Medicaid-Enrollment-and-Benefit-Spending-by-Users-and-Non-Users-of-LTSS-FY-
2021-1.pdf.
52 SSI is a federal assistance program authorized under Title XVI of the Social Security Act that provides monthly cash
payments to aged, blind, or disabled individuals who have limited income and resources. SSI is intended to provide a
guaranteed minimum income to adults who have difficulty covering their basic living expenses due to age or disability
and who have little or no Social Security or other income. It is also designed to supplement the support and
maintenance of needy children under the age of 18 who have severe disabilities. Unlike Medicaid, SSI eligibility
requirements and benefit levels are based on nationally uniform standards. For more information, see CRS Report
R46111, Medicaid Eligibility: Older Adults and Individuals with Disabilities.
53 CRS Report R46111, Medicaid Eligibility: Older Adults and Individuals with Disabilities.
54 Section 1917(b) of the Social Security Act describes estate recovery provisions.
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Medicaid essentially “loans” financial support for LTSS to participants; once the participant is
deceased, assets that were otherwise not factored into the income or asset limits to gain eligibility,
and were allowed to remain in the individual’s estate, may become due to the state and the federal
government.55
Congress has increasingly focused on legislative efforts to expand options for individuals to
access Medicaid-covered LTSS, primarily through options to cover HCBS, and has incentivized
states to do so. However, federal policymakers have concurrently enacted legislation to ensure
that the program remains focused on providing needed care to individuals who have limited
income and assets. To this end, federal Medicaid law established requirements that non-Medicaid
family members, such as spouses, are protected from financial hardship while discouraging
would-be applicants from divesting their assets sooner than would occur otherwise to gain
Medicaid-covered LTSS. The following section describes legislative activity concerning spousal
impoverishment protections, the treatment of certain assets, and transfer of assets for less than fair
market value (FMV) prior to Medicaid eligibility.56
Spousal Impoverishment Protections
The Medicare Catastrophic Coverage Act of 1988 (P.L. 100-360)57 established new rules for the
treatment of income and resources (i.e., assets) of married couples when one spouse needs LTSS
provided in an institution, such as a nursing home. Commonly referred to as “spousal
impoverishment protections,” these requirements attempt to equitably allocate income and assets
to each spouse when determining Medicaid financial eligibility and are intended to prevent the
impoverishment of the non-Medicaid spouse. These rules allow the Medicaid-spouse to transfer
income and assets to the non-Medicaid spouse up to state-determined monthly income and asset
thresholds within federal minimums and maximums, which are adjusted annually for inflation,
referred to as the minimum monthly maintenance needs allowance (MMMNA) and the
community spouse resource allowance (CSRA).58 Prior to enactment of P.L. 100-360, the non-
Medicaid spouse could face financial hardship because the income and assets that belonged to the
Medicaid-spouse or the couple were considered available for the cost of care. In addition,
amounts that could be set aside for the non-Medicaid spouse were considered by some to be
inadequate to cover basic living expenses and personal needs.
Over time, Congress has worked to amend these spousal impoverishment protections to address
equity and other access issues. For example, under the DRA, states were required to apply the
“income-first” rule in determining whether to allocate additional spousal assets above the CSRA
for a non-Medicaid spouse with limited or no income to bring that spouse’s income up to the

55 National Council on Aging, What Is Medicaid Estate Recovery? And How Does It Work?, June 17, 2021,
https://www.ncoa.org/article/what-is-medicaid-estate-recovery-and-how-does-it-work; for more information, see
MACPAC, “Chapter 3: Medicaid Estate Recovery: Improving Policy and Promoting Equity,” March 2021,
https://www.macpac.gov/wp-content/uploads/2021/03/Chapter-3-Medicaid-Estate-Recovery-Improving-Policy-and-
Promoting-Equity.pdf.
56 This discussion of legislative history largely focuses on financial eligibility for Medicaid-covered LTSS, for more
information about ways Medicaid has expanded to include additional optional eligibility pathways for working
individuals with disabilities or working families who have a child with a disability under Medicaid Buy-In Groups, see
CRS Report R46111, Medicaid Eligibility: Older Adults and Individuals with Disabilities. These proposals have been
enacted under Section 201 of the Ticket to Work and Work Incentives Improvement Act of 1999 (TWWIIA; P.L. 106-
170) and Section 6061 of the DRA (P.L. 109-171), the Family Opportunity Act (FOA).
57 Most of the Medicare Catastrophic Coverage Act of 1988 (P.L. 100-360) was repealed under the Medicare
Catastrophic Coverage Repeal Act of 1989 (P.L. 101-234), but the spousal impoverishment provisions were retained.
58 CMS, 2024 SSI and Spousal Impoverishment Standard, https://www.medicaid.gov/sites/default/files/2023-11/
cib11142024.pdf.
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MMMNA. The income-first rule requires Medicaid programs to consider whether all income of
the Medicaid-spouse that could be made available to the non-Medicaid spouse has been made
available prior to allocating any additional resources.59 Likewise, prior to enactment of the ACA,
spousal impoverishment rules applied only in situations where the Medicaid participant was
receiving LTSS in an institution. States had the option to extend these protections to certain
HCBS participants under a Section 1915(c) HCBS waiver program.60 The ACA temporarily
required states to apply the spousal impoverishment rules to all married individuals who are
eligible for HCBS under certain specified authorities, not just those receiving institutional care.61
This modified provision expired under the ACA on December 31, 2018. However, Congress has
helped extend the authority for these protections several times. Most recently, the Consolidated
Appropriations Act, 2023 (P.L. 117-328), extends these protections through FY2027.62
Asset Transfer Rules
For persons seeking Medicaid eligibility and coverage of LTSS, federal law requires states to
apply rules regarding the transfer of assets prior to qualifying for Medicaid.63 These rules attempt
to ensure that Medicaid applicants apply their assets toward the cost of their care and do not
divest them sooner than would occur otherwise to gain Medicaid eligibility. Medicaid may
require states to delay Medicaid eligibility for applicants seeking institutional LTSS and certain
HCBS who have disposed of assets for less than fair market value (FMV) on or after a “look-back
period,” or period of time prior to application for services. In other words, transfers for less than
FMV may be, but are not always, prohibited during a look-back period prior to application for
Medicaid. Federal Medicaid law also prohibits spouses of applicants from transferring assets for
less than FMV during this same period as a condition of the applicant’s eligibility for Medicaid.
Initially, states were required to take into account the FMV of asset transfers within the preceding
24-month period in determining SSI eligibility, and it was optional for states to impose
restrictions with respect to Medicaid LTSS eligibility, provided it was not more restrictive than
SSI, with certain exceptions.64 Subsequent legislation required state Medicaid programs to
prohibit transfers of assets for less than FMV (rather than giving them the option to do so) and
extended the look-back period from 24 months to 30 months.65 Further legislative efforts
lengthened the look-back period from 30 months to three years (36 months).66 The DRA of 2005

59 CMS, Center for Medicaid and State Operations, State Medicaid Directors Letter, SMD #06-018, July 27, 2006, at
https://downloads.cms.gov/cmsgov/archived-downloads/SMDL/downloads/SMD072706b.pdf;
https://downloads.cms.gov/cmsgov/archived-downloads/SMDL/downloads/TOAEnclosure.pdf.
60 These HCBS recipients are eligible under the “special home and community-based services waiver eligibility group”
or “217 Group” in reference to the specific regulatory citation for this group at 42 C.F.R. §435.217. Prior to Section
2404 of the ACA, states that chose to apply spousal impoverishment protections as an option for the 217 Group also
had the option to treat married HCBS recipients in the 217 Group as institutionalized for the purposes of post-eligibility
treatment of income (PETI) rules.
61 States that cover the 217 Group must also apply the post-eligibility treatment of income rules.
62 For further information, see CRS Report R47821, Consolidated Appropriations Act, 2023 (P.L. 117-328): Medicaid
and CHIP Provisions.
63 See Section 1917(c) of the SSA for requirements regarding the transfer of assets for less than fair market value.
64 SSI’s look-back period was initially 24 months when the asset transfer penalty was established in 1980. The SSI
asset transfer penalty was later eliminated in 1988. However, Congress worked to reimpose the SSI asset transfer
penalty in 1999 and extended the penalty period to 36 months, which, at the time, was the same length as Medicaid’s
asset transfer penalty period; see Social Security Administration, Annual Statistical Supplement, 2023, “Transfer-of-
Resources Penalties” at https://www.ssa.gov/policy/docs/statcomps/supplement/2023/ssi.html.
65 Section 303(b) of the Medicare Catastrophic Coverage Act of 1988 (P.L. 100-360).
66 Section 13611 of the Omnibus Budget Reconciliation Act of 1993 (P.L. 103-66).
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continued this policy trend and lengthened the look-back period that applies under current law,
from three years to five years.67 Under this change, asset transfers for less than FMV of all kinds
made within five years of application to Medicaid are subject to review by the state, which then
applies asset transfer penalties in the form of a penalty period or months of program ineligibility.
This provision further changed the start date of the ineligibility period, or penalty period, for all
transfers made on or after the date of enactment, as well as how states calculate the ineligibility
period. The DRA also added requirements for states to approve undue hardship requests when the
asset transfer penalty would deprive an individual of critical medical care or basic necessities,
such as food, clothing, and shelter.
Treatment of Assets
For the purposes of Medicaid asset transfer rules, all resources (and income) of an individual or
couple are evaluated to determine whether the establishment, purchase, sale, or transfer of an
asset has occurred for less than FMV. Generally, states follow federal SSI program rules
concerning the treatment of most asset types that individuals possess at the time of application to
Medicaid. Although Medicaid law does not contain provisions specifying how all assets should be
treated, it does include special rules about how states must treat certain types of assets, such as
annuities, fees for Continuing Care Retirement Communities (CCRCs), the value of a primary
residence, life estates, promissory notes, loans, mortgages, and trusts. Also, the HHS Secretary
has the authority to issue guidance to states on other categories of transactions that may be treated
as transfers of assets for less than FMV.
The DRA added requirements concerning the treatment of annuities for purposes of Medicaid
eligibility. It also restricted Medicaid LTSS eligibility if an applicant’s equity interest in the home
exceeds a statutorily determined amount.68 DRA also allowed CCRCs and life care communities
to require residents to spend their resources—declared when applying for admission—on their
care before they apply for Medicaid. It further required states to consider certain entrance fees for
CCRCs or life care communities as countable resources or assets when determining an
individual’s eligibility for Medicaid.69 The DRA also specified that the purchase of a life estate is
considered a transfer of assets for less than FMV unless the purchaser resides in the home for at
least one year after the date of purchase. It further made funds used to purchase a promissory
note, loan, or mortgage subject to the look-back period, and thus result in a penalty period unless
the payment terms meet certain specifications.
Long-Term Care Insurance, Planning, and Savings
Federal policymakers have also sought to address private LTSS financing in several ways: by
making the purchase of private LTCI more accessible and attractive to consumers through the
Medicaid Partnership Program, by providing certain tax benefits and consumer protections for the

67 Section 6011 of the Deficit Reduction Act of 2005 (DRA, P.L. 109-171).
68 Initially, the home equity limit amount a state could elect was a minimum of $500,000, not to exceed $750,000.
Beginning in 2011, these dollar amounts were increased from year to year, based on the annual percentage increase in
the Consumer Price Index for All Urban Consumers (CPI-U), rounded to the nearest $1,000 (currently $713,000, not to
exceed $1,071,000). CMS, 2024 SSI and Spousal Impoverishment Standard, https://www.medicaid.gov/sites/default/
files/2023-11/cib11142024.pdf.
69 Entrance fees for CCRCs can range from several thousand dollars to hundreds of thousands of dollars and vary by
occupancy, setting size, and contract type; for more information, see GAO, Older Americans: Continuing Care
Retirement Communities Can Provide Benefits, but Not Without Some Risk, GAO-10-611, June 2010,
https://www.gao.gov/assets/gao-10-611.pdf.
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purchase of private LTCI, and by establishing the Federal Long-Term Care Insurance Program
(FLTCIP) for federal workers, retirees, and certain qualified relatives. Other programs have
sought to educate consumers about the need to save for their LTSS needs by providing resources
and information to consumers about long-term care planning through the creation of a National
Clearinghouse for Long-Term Care Information. Policymakers have also established ways for
individuals with disabilities and their families to save for LTSS expenses through Achieving a
Better Life Experience (ABLE) accounts, which are a type of tax-favored savings account for
individuals with qualifying disabilities.
With respect to broader LTSS financing initiatives, the ACA established a new publicly
administered LTSS financing program, the Community Living Assistance Services and Supports
(CLASS) Independence Benefit Plan, for the purchase of LTSS for individuals with certain
functional limitations, which was repealed prior to implementation. Subsequent legislation
created a bipartisan commission tasked with developing a plan and legislative recommendations
for an LTSS financing system in the United States; however, commissioners did not reach an
agreement on LTSS financing recommendations. The following section describes these long-term
care insurance, savings, and planning provisions in greater detail.
Medicaid Partnership Program
In the late 1980s, several state Medicaid programs began to collaborate with private long-term
care insurance (LTCI) companies to “create a bridge between Medicaid and private insurance for
LTSS.”70 Initial planning grants were provided to states by the Robert Wood Johnson Foundation
to design, market, and operate programs that would integrate public-private partnerships in LTSS
financing. At the time, these partnerships aimed to create more affordable LTCI policies and
provide enhanced consumer protections against the large financial risk associated with the high
costs of LTSS.71 These planning grants resulted in the development of the State LTCI Partnership
Program (referred to as the Partnership Program), a collaborative program between state
Medicaid programs, the former Health Care Financing Administration (now the Centers for
Medicare & Medicaid Services [CMS]), and the private LTCI industry.
The Partnership Program allows individuals who purchase a private LTCI policy to qualify for
Medicaid covered-LTSS without meeting the same Medicaid financial eligibility rules regarding
asset limits that other Medicaid LTSS applicants must meet, as long as they meet other Medicaid
eligibility criteria.72 Generally, Partnership Program policyholders would seek Medicaid for
extended coverage of LTSS after their private LTCI benefits have been exhausted. For these
individuals, Medicaid financial eligibility requirements for the treatment of certain assets are
relaxed at (1) the time of application to Medicaid and (2) the time of the beneficiary’s death,

70 HHS, “State Long-Term Care Partnership Program: Reporting Requirements for Insurers,” 73 Federal Register
76960-76969, December 18, 2008, https://www.federalregister.gov/documents/2008/12/18/E8-28388/state-long-term-
care-partnership-program-reporting-requirements-for-insurers.
71 Ibid.
72 As of March 2014, 40 states and the District of Columbia had implemented a State LTCI Partnership Program; see
American Association for Long-Term Care Insurance (AALTCI), “Long Term Care Insurance Partnership Plans,”
2021, https://www.aaltci.org/long-term-care-insurance/learning-center/long-term-care-insurance-partnership-plans.php.
About 641,000 Partnership Program policies were in force in 2011, accounting for 9% of all LTCI policies; see
Thomson Reuters and Univita Health, “The Long-Term Care Partnership Program: 5 Years After Enactment Under the
Deficit Reduction Act,” submitted to the HHS, Office of the Assistant Secretary for Planning and Evaluation, October
17, 2011.
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when Medicaid estate recovery is generally applied.73 Most Medicaid LTSS applicants may
protect no more than $2,000 in assets for an individual and $3,000 for a married couple. In
general, Partnership Program policyholders may protect amounts equivalent to the value of the
benefits paid by the LTCI policy purchased (e.g., $100,000 of nursing home or assisted living
benefits paid enables that individual to retain up to $100,000 in assets and still qualify for
Medicaid coverage in that state).
Under the Long-Term Care Insurance Partnership Program, individuals who purchase certain
private LTCI policies may qualify for Medicaid without the same financial eligibility
requirements that other applicants must meet. The Omnibus Budget Reconciliation Act of 1993
(OBRA 1993; P.L. 103-66) amended Medicaid law to require that all 50 states and Washington,
DC, seek recovery of payments from a deceased Medicaid participant’s estate for certain medical
assistance provided to persons aged 55 or older.74 At the time, states operating Partnership
Programs were permitted to disregard from countable assets certain LTSS benefits paid for by
private LTCI policies when determining Medicaid financial eligibility. Under OBRA 1993, states
with an approved state plan amendment for a Partnership Program as of May 14, 1993, were
grandfathered in and could continue existing asset disregard practices and waive the new
requirements for Medicaid estate recovery of those assets. While OBRA 1993 did not prohibit
states from attempting to establish new Partnership Programs, states establishing new programs
on or after May 14, 1993, were precluded from waiving these estate recovery requirements. By
that date, five states (California, Connecticut, Indiana, Iowa, and New York) had received CMS
approval.
The DRA expanded the Partnership Program under a new set of conditions that allowed any state
with an HHS Secretary-approved Medicaid state plan amendment to operate a qualified state
LTCI Partnership Program if specified conditions were met. Under these new conditions, states
were required to exclude one dollar of asset for every dollar paid out under a qualified LTCI
policy issued under the state’s new Partnership Program when determining Medicaid financial
eligibility and protecting assets subject to Medicaid estate recovery. The DRA also required that a
qualified LTCI policy, as defined in Section 7702B(b) of the Internal Revenue Code (IRC), meet
new uniform standards for LTCI policies under qualified Partnership Programs.75 Among these
requirements are consumer protections related to inflation protection, unintentional lapses in
coverage, disclosure of certain policies, and contingent nonforfeiture requirements that protect
consumers against increases in policy rates.76
Tax Benefits and Protections for Long-Term Care Insurance
Federal law provides tax benefits and minimum consumer protection standards for purchasers of
“tax-qualified” LTCI policies, as authorized by the Health Insurance Portability and

73 Medicaid estate recovery requires states to seek recovery of payment from the estates of deceased Medicaid
participants for certain benefits paid on their behalf. For individuals aged 55 or older, states are required to seek
recovery of payments for nursing facility services, home and community-based services, and related hospital and
prescription drug services. States have the option to recover payments for all other Medicaid services provided to these
individuals, except Medicare cost-sharing paid on behalf of Medicare Savings Program beneficiaries. For more
information, see CRS Report R43506, Medicaid Financial Eligibility for Long-Term Services and Supports.
74 Ibid.
75 HHS, “State Long-Term Care Partnership Program: Reporting Requirements for Insurers,” 73 Federal Register
76960-76969, December 18, 2008.
76 For more information on the State LTCI Partnership Program, see American Association for Long-Term Care
Insurance, “Long Term Care Insurance Partnership Plans,” 2021, https://www.aaltci.org/long-term-care-insurance/
learning-center/long-term-care-insurance-partnership-plans.php.
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Accountability Act of 1996 (HIPAA, P.L. 104-191). These provisions are established in the
Internal Revenue Code (26 U.S.C. §7702B). Most traditional LTCI policies sold after enactment
of HIPAA are tax-qualified policies. Linked-benefit LTCI policies with a separately identifiable
premium component can also qualify for tax benefits.
HIPAA tax-qualified LTCI products are required to have defined benefit triggers for when the
policy begins to pay benefits. These triggers require policyholders to meet the definition of a
“chronically ill” individual who has been certified by a licensed health care practitioner as
• being unable to perform (without substantial assistance) at least two ADLs for a
period of at least 90 days due to a loss of functional capacity;
• having a level of disability similar (as determined by the Secretary of the
Treasury in consultation with the Secretary of Health and Humans Services) to
the level of disability described above; or
• requiring substantial supervision to protect the individual from threats to health
and safety due to severe cognitive impairment.
Federal law provides tax advantages for some aspects of private LTCI. The dollar value of
benefits from a HIPAA tax-qualified LTCI product are excluded from the gross income of the
taxpayer (i.e., they are exempt from federal taxation). In general, LTCI premiums are allowed as
itemized deductions to the extent that they and other unreimbursed medical expenses exceed
7.5% of adjusted gross income. LTCI premium deductions are subject to age-adjusted annual
maximum amounts. In 2023, these amounts ranged from $480 for those aged 40 and younger to
$5,960 for those aged 71 and older. Under current law, employer contributions toward the cost of
tax-qualified LTCI, while not typical, are excluded from the gross income of an employee. Self-
employed individuals may include LTCI premiums in calculating their deductions, along with
other health insurance premiums. Only amounts less than or equal to the age-adjusted limits may
be deducted or excluded from taxable income.
Federal Long-Term Care Insurance Program
The Long-Term Care Security Act (P.L. 106-265) authorized the Office of Personnel Management
(OPM) to offer a federal long-term care insurance program (FLTCIP), which was established in
2002. Under the FLTCIP, active and retired federal workers and eligible family members who are
approved for coverage may voluntarily purchase an LTCI policy. FLTCIP premiums may be
deducted from an individual’s salary or pension benefit, but they are not pretax contributions, and
workers pay 100% of the premiums. Eligible workers receive no premium assistance from the
federal government. Since enactment, amendments to this legislation have primarily addressed
eligibility. OPM has suspended new enrollee applications for FLTCIP coverage, as well as current
enrollee’s coverage increases, to allow time to assess benefit offerings and premium rates. The
suspension period began on December 19, 2022, and is scheduled to remain in effect for 24
months unless OPM decides to end or extend the suspension period.77
National Clearinghouse for Long-Term Care Information
To help individuals plan for their potential LTSS needs, the DRA required the HHS Secretary to
establish the National Clearinghouse for Long-Term Care Information (the Clearinghouse) to

77 For more information, see the Federal Long-Term Care Insurance Program at https://www.ltcfeds.com/.
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• educate consumers about the availability and limitations of coverage for long-
term care under Medicaid,
• provide objective information to help consumers decide whether to purchase
LTCI, and
• maintain a list of states with State LTCI Partnership Programs under Medicaid.
Under the DRA, $3 million in mandatory funding for the Clearinghouse was provided for each
fiscal year between FY2006 and FY2010. The ACA then amended Section 6021(d) of the DRA to
extend mandatory funding for the Clearinghouse to $3 million per year for FY2011 through
FY2015.78 The ACA also required the Clearinghouse to include information regarding how
benefits provided under a CLASS benefit plan differ from disability insurance benefits. ACL
continues to operate the Clearinghouse at LongTermCare.gov.79
Community Living Assistance Services and Supports (CLASS) Act
The ACA created a federally administered voluntary LTCI program under Title XXXII of the
Public Health Service Act (PHSA) titled “Community Living Assistance Services and Supports,”
or the CLASS Act. Subsequent legislation repealed the CLASS Act prior to program
implementation. If established, the CLASS program would have provided a cash benefit that
eligible enrollees could use to purchase LTSS, such as personal assistance services, home care
aides, homemaker services, nursing support, respite care, home modifications, assistive
technology, and accessible transportation. The stated purpose of the CLASS program was to
• provide individuals with functional limitations various services and supports to
allow them to maintain their personal and financial independence and live in the
community through a new financing strategy for community living assistance
services and supports;
• establish an infrastructure to help address the nation’s community living
assistance services and support needs;
• alleviate burdens on family caregivers; and
• address institutional bias by providing a financing mechanism that supports
personal choice and independence to live in the community.
Furthermore, the CLASS program would have provided employed individuals aged 18 and older
the option to enroll in the voluntary program. The ACA specified two processes for enrollment
into the CLASS program. The first was an automatic enrollment process. Within the automatic
enrollment process, employers who chose to participate would be responsible for withholding
CLASS premiums through payroll deductions. Employees would then have the opportunity to opt
out if they did not want to participate. These enrollment procedures for employers in the CLASS
program were intended to be similar to those established for 401(k) and other similar retirement
plans by the Internal Revenue Service. The second was an alternative enrollment process
developed for self-employed individuals, individuals with more than one employer, and
individuals who had an employer that did not elect to participate in the automatic enrollment
process.

78 The American Taxpayer Relief Act of 2012 (ATRA, P.L. 112-240) rescinded the unobligated balance of ACA’s
funds to the National Clearinghouse for Long Term Care Information.
79 For more information, see HHS, Administration for Community Living (ACL), “Long-Term Care Planning,” at
https://acl.gov/programs/long-term-care-planning, and the National Clearinghouse for Long-Term Care Information at
“LongTermCare.gov,” https://acl.gov/ltc.
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Premiums for the CLASS program were to be determined by the HHS Secretary based on 75-year
actuarial estimates of expected future use and expenditures. Premiums would vary by age at
enrollment. The ACA also included premium subsidies for workers with incomes below the
federal poverty level and full-time students aged 18 to 21 who were currently working. To be
eligible to receive benefits, an individual must have been an active enrollee who met the five-year
vesting and minimum earnings requirements. In addition, an eligible individual must have had a
functional limitation, as certified by a licensed health care practitioner, that was expected to last
for at least 90 days. Benefits to eligible recipients included a cash benefit of at least an average of
$50 per day. Other benefits included advocacy services and advice and assistance counseling on
accessing and coordinating LTSS.
A number of concerns were raised about the long-term sustainability of the program and, as a
result, HHS concluded in a letter to Congress in the fall of 2011 that the agency did not see a
viable path forward for implementation.80 With administrative implementation of the CLASS
program stalled, the 112th Congress passed legislation to repeal the CLASS program provisions
under the American Taxpayer Relief Act of 2012 (ATRA, P.L. 112-240).81
Bipartisan Commission on Long-Term Care
With the repeal of the CLASS Act, legislation was included under ATRA creating a bipartisan
commission to develop a plan and legislative recommendations for the establishment,
implementation, and financing of an LTSS system in the United States. Section 643 of the ATRA
established a Commission on Long-Term Care (the Commission), composed of 15 members
representing the interests of certain LTSS stakeholders and organizations, appointed by the
President and specified congressional leaders. The Commission was required to vote on a report
based on the developed plan and any proposals for legislative action, referred to as the
commission bill, no later than six months after the Commission’s appointment. If approved by a
majority of commission members, the commission bill would have been required to be introduced
in the Senate and the House. The Commission was scheduled to terminate 30 days after a vote on
the plan and proposed commission bill.
Formally established on June 10, 2013, the Commission held four public hearings and met in nine
working group sessions over the next three months.82 During that time, the Commission solicited
stakeholder and general public comments.83 On September 30, 2013, the Commission issued a
final report to Congress that made consensus recommendations regarding service delivery and
workforce; however, the Commission did not reach an agreement on LTSS financing
recommendations.84 Rather, the final report outlined different LTSS financing approaches offered
by members.

80 HHS, “Secretary Sebelius’ Letter to Congress about CLASS,” October 14, 2011, https://web.archive.org/web/
20121018103630/http://www.hhs.gov/secretary/letter10142011.html.
81 Section 642 of ATRA repealed PHSA Title XXXII.
82 For information about the Commission on Long-Term Care including commissioners, press releases, hearings, and
public comments, see http://www.ltccommission.org/.
83 Commission on Long-Term Care, “Report to the Congress,” September 30, 2013, https://www.gpo.gov/fdsys/pkg/
GPO-LTCCOMMISSION/pdf/GPO-LTCCOMMISSION.pdf. Five commissioners (Laphonza Butler, Henry Claypool,
Judith Feder, Lynnae Ruttledge, and Judith Stein) also released a report describing their shared vision of a LTSS
financing system; see Long-Term Care Commission, “A Comprehensive Approach to Long-Term Services and
Supports,” September 23, 2013.
84 Ibid.
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Achieving a Better Life Experience (ABLE) Accounts
The Stephen Beck, Jr., Achieving a Better Life Experience (ABLE) Act of 2014 was enacted as
part of Division B of the Tax Increase Prevention Act of 2014 (P.L. 113-395). The ABLE Act
created Section 529A of the IRC, which allows states to establish and maintain a type of tax-
favored savings program for individuals with qualifying disabilities.85 The stated purpose of the
act is to
• encourage and assist individuals and families in saving private funds for the
purpose of supporting individuals with disabilities to maintain health,
independence, and quality of life, and
• provide secure funding for disability-related expenses on behalf of designated
beneficiaries with disabilities that will supplement, but not supplant, benefits
provided through private insurance, Medicaid, SSI, the beneficiary’s
employment, and other sources.
Under a state’s qualified ABLE program, contributions may be made to the investment account of
an eligible individual with a disability, known as the designated beneficiary.86 Funds from an
ABLE account may be used for the short-term needs or long-term benefit of the designated
beneficiary to pay for “qualified disability expenses,” including those related to education,
housing, transportation, employment training and support, assistive technology and personal
support services, and health and wellness (including LTSS), among other expenses. To establish
an ABLE account, an individual must have a qualifying disability that began before age 26 (or,
beginning in 2026, before age 46).87
ABLE programs are modeled loosely on 529 college-savings plans, also known as qualified
tuition programs, and have two distinct benefits for eligible individuals with disabilities. First,
assets in an ABLE account can grow tax-free annually, and distributions from the account for
qualified disability expenses are not included in the designated beneficiary’s gross income for
federal income tax purposes. Second, assets in an ABLE account and distributions from the
account for qualified disability expenses are excluded when determining a designated
beneficiary’s eligibility for most federal means-tested programs, including Medicaid.88 Under the
SSI program, however, only the first $100,000 in an ABLE account is excluded.89

85 For information on the implementation of state ABLE programs, see the ABLE National Resource Center, at
https://www.ablenrc.org/select-a-state-program/.
86 Contributions to ABLE accounts are subject to both annual and cumulative limits. For more information on ABLE
accounts, see U.S. Congress, Senate Committee on the Budget, Tax Expenditures: Compendium of Background
Material on Individual Provisions, committee print, prepared by the Congressional Research Service, 115th Cong., 2nd
sess., December 21, 2018, S.Prt. 115-28 (Washington: GPO, 2019), pp. 1037-1045, https://www.govinfo.gov/content/
pkg/CPRT-115SPRT34119/pdf/CPRT-115SPRT34119.pdf#page=1053.
87 Section 124 of the SECURE 2.0 Act of 2022 (Division T of the Consolidated Appropriations Act, 2023 [P.L. 117-
328]) amended IRC Section 529A to increase the disability onset age limit for an ABLE account from age 26 to age 46,
effective for tax years after December 31, 2025; see Social Security Administration, “President Signs the Consolidated
Appropriations Act, 2023,” Social Security Legislative Bulletin, no. 117-14, January 4, 2023, https://www.ssa.gov/
legislation/legis_bulletin_122922.html.
88 CMS, “Implications of the ABLE Act for State Medicaid Programs,” State Medicaid Directors Letter, SMD#17-002,
September 7, 2017, https://www.medicaid.gov/sites/default/files/federal-policy-guidance/downloads/smd17002.pdf.
89 Legislation enacted in subsequent Congresses made amendments to IRC regarding ABLE programs. Specifically,
Section 303 of the Protecting Americans from Tax Hikes Act of 2015 (the PATH Act), which was enacted as part of
the Consolidated Appropriations Act, 2016 (P.L. 114-113), removed the requirement that a state’s qualified ABLE
program allow the establishment of an ABLE account only for a designated beneficiary who is a resident of that state or
(continued...)
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Concluding Observations
The need for LTSS in the future will depend on a number of factors, including demographic
changes in the nation’s population, economic conditions that affect an individual’s ability to pay
for LTSS, levels of disability and care needs, and advances in medical technology and innovation
in the prevention and treatment of chronic conditions. Although Congress has debated both
incremental and comprehensive policy approaches regarding how LTSS is financed, policymakers
have taken a cautious approach to establishing any new federal commitments to LTSS financing.
In particular, concern about cost has been central to the debate, at a time when the federal
government continues to experience large budget deficits and increasing outlays for the Medicare
and Medicaid programs. At the same time, the United States spends less on long-term care as a
share of GDP than most other wealthy countries.90 The COVID-19 pandemic revealed the
weaknesses and fragmentation of care underlying the current system, which continues to face
challenges in recruiting and retaining direct care workers to meet current demand. As the federal
government continues the difficult work of improving individuals’ access to long-term care, new
strategies that build on and strengthen LTSS financing and delivery systems will likely continue
to be a critical issue for states and federal policymakers, especially as the current system relies on
family members to provide the bulk of care and Medicaid is the largest payer and payer of last
resort for LTSS in the United States.

of a contracting state. The following three changes, effective for January 1, 2018, through December 31, 2025, under
Sections 11024 and 11025 of the 2017 Tax Revision (P.L. 115-97), (1) increased the amount of contributions allowed
to an ABLE account for certain employed designated beneficiaries, subject to specified contribution limits; (2)
permitted designated beneficiaries who meet certain requirements to claim the saver’s credit on non-rollover
contributions made to their ABLE accounts during the year; and allowed a limited tax-free rollover from a 529
qualified tuition program account of the designated beneficiary or certain family member to the ABLE account of the
designated beneficiary. For more information, see CRS Report R47846, Reference Table: Expiring Provisions in the
“Tax Cuts and Jobs Act” (TCJA, P.L. 115-97), and U.S. Department of the Treasury, Internal Revenue Service,
“Guidance Under Section 529A,” 85 Federal Register 74010-74047, November 19, 2020,
https://www.federalregister.gov/documents/2020/11/19/2020-22144/guidance-under-section-529a-qualified-able-
programs.
90 Jordan Rau, “What Long-Term Care Looks Like Around the World,” New York Times and KFF, Dying Broke: A
KFF Health New-New York Time Project, November 14, 2023, https://kffhealthnews.org/news/article/dying-broke-
long-term-care-other-countries/.
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link to page 25 Long-Term Services and Supports: History of Federal Policy and Programs

Appendix. Timeline of Long-Term Services and
Supports (LTSS) Legislative Activity
This appendix provides a historical timeline, by decade, of the major legislative actions that first
established and then amended various LTSS programs and policies, beginning with the Kerr-Mills
Medical Assistance to the Aged program in the 1960s, a precursor to the Medicaid program that
was established in 1965(see Figure A-1). This history of LTSS legislative activity is not meant to
be comprehensive; rather, it summarizes the federal legislative actions and amendments discussed
in this report to provide a historical timeline of federal LTSS policy development in chronological
order.
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Figure A-1. Long-Term Services and Supports (LTSS) Legislative Activity by Decade
(1960 to 2023)

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Author Information

Kirsten J. Colello

Specialist in Health and Aging Policy

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Long-Term Services and Supports: History of Federal Policy and Programs

Disclaimer
This document was prepared by the Congressional Research Service (CRS). CRS serves as nonpartisan
shared staff to congressional committees and Members of Congress. It operates solely at the behest of and
under the direction of Congress. Information in a CRS Report should not be relied upon for purposes other
than public understanding of information that has been provided by CRS to Members of Congress in
connection with CRS’s institutional role. CRS Reports, as a work of the United States Government, are not
subject to copyright protection in the United States. Any CRS Report may be reproduced and distributed in
its entirety without permission from CRS. However, as a CRS Report may include copyrighted images or
material from a third party, you may need to obtain the permission of the copyright holder if you wish to
copy or otherwise use copyrighted material.

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