Order Code RS22716
September 7, 2007
Family Caregiving to the Older Population:
Legislation Enacted in the 109th Congress and
Proposals in the 110th Congress
Kirsten J. Colello
Analyst in Gerontology
Domestic Social Policy Division
Summary
Family caregivers fulfill the majority of the need for long-term care provided to
older persons with chronic disabilities in the United States. Among those older
Americans receiving long-term care, the overwhelming majority receive some form of
informal, or unpaid, care primarily provided by spouses and adult children. Family
caregiving encompasses a wide range of activities, including assistance with personal
care needs, medication management, and coordination with other health-care
professionals. For many, caregiving is a rewarding experience; however, for some,
caregiving can lead to emotional and physical strain, as well as financial hardship. As
demand for caregiving to the older population is likely to increase, certain demographic
factors may limit the number of family caregivers and their capacity to provide care.
Although the federal government has established programs and services for family
caregivers, policy makers have identified the need for additional federal benefits. This
report briefly describes legislation enacted in the 109th Congress and proposals
introduced in the 110th Congress that directly assist family caregivers (H.R. 1032, H.R.
1161, H.R. 1369, H.R. 1542, H.R. 1560, H.R. 1807, H.R. 1871, H.R. 1911, H.R. 2244,
H.R. 2392, H.R. 3043, S. 614, S. 897, S. 898, S.910, S. 1340, S. 1681). This report will
be updated upon significant legislative activity.
Background
Family caregivers fulfill the majority of the need for long-term care provided to older
persons with chronic disabilities in the United States. It is estimated that about 5.5
million adults aged 65 and older, or 16% of the U.S. population 65 and older, receive
long-term care services and supports.1 The overwhelming majority (90%) receive
1 CRS calculations based on unpublished tabulations from the 1999 National Long Term Care
Survey by Brenda C. Spillman, the Urban Institute, 2003. For further information, see CRS
(continued...)

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informal, or unpaid, care — primarily provided by spouses and adult children — either
alone or in combination with formal, or paid, care.2
Family caregiving to older individuals in need of long-term care encompasses a wide
range of activities, services, and supports. Caregiving activities can include assistance
with personal care needs, such as bathing, dressing, or eating, as well as other activities
that are necessary for independent living, such as shopping, medication management, and
meal preparation. In addition, family caregivers may assist older family members with
accessing the health-care and social services systems, communicate with providers and
insurers, and advocate for the care recipient. Family caregivers may also arrange,
supervise, or pay for formal care to be provided to the care recipient.3
While many family caregivers find caregiving for an older family member a
rewarding experience, other life circumstances, in addition to caregiving, may increase
caregiver stress. For example, family members may not live in close proximity to the care
recipient, they may face the competing demands of child care and elder care, or they may
have to manage work with caregiving responsibilities. As a result, family caregiving can
lead to emotional and physical strain and financial hardship. These effects are more likely
to be felt among those caring for persons with high levels of disability or cognitive
impairment. Moreover, caregiver stress has been linked to nursing home admission for
the care recipient; thus, interventions that can reduce stress may also reduce nursing home
placement.4
Many believe that the demand for family caregiving to the older population is likely
to increase with increases in life expectancy and the aging of the baby-boom generation.
However, others caution that demographic trends such as reduced fertility, increased
divorce rates, and greater labor force participation among women may limit the number
of available caregivers to older individuals, as well as the capacity for caregivers to
provide needed care.
Recognizing family caregivers as an important part of the nation’s long-term care
delivery system, the federal government has established programs and initiatives that
provide direct supports to caregivers, including respite care, education and training, tax
1 (...continued)
Report RL33919, Long-Term Care: Consumers, Providers, Payers, and Programs, by Carol
O’Shaughnessy, Julie Stone, Laura B. Shrestha, and Thomas Gabe.
2 Brenda C. Spillman and Kirsten J. Black, Staying the Course: Trends in Family Caregiving,
AARP Public Policy Institute, Washington, DC, November 2005. This report is based on an
analysis of the National Long Term Care Survey, 1999.
3 CRS Report RL34123, Family Caregiving to the Older Population: Background, Federal
Programs, and Issues for Congress, by Kirsten Colello (hereinafter referred to as CRS Report
RL34123).
4 Brenda C. Spillman and Sharon K. Long, “Does High Caregiver Stress Lead to Nursing Home
Entry?” Office of Disability, Aging and Long-Term Care Policy, Office of the Assistant Secretary
for Planning and Evaluation, U.S. Department of Health and Human Services, January 26, 2007
(hereinafter referred to as Spillman and Long, Does High Caregiver Stress Lead to Nursing
Home Entry? 2007).

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credits, and cash assistance.5 As the nation prepares for the growing older population and
likely increase in demand for long-term care services among the frail elderly, Congress
will face a decision whether to expand the role of the federal government in providing
direct support to family caregivers. Some policy makers favor enhancing services and
supports that provide either direct assistance or federal income tax relief to caregivers,
while others believe the federal government has a limited responsibility in assisting
families who provide unpaid assistance, many by choice, to older individuals. The past
few Congresses have enacted legislation and introduced several bills that would provide
new benefits or enhance and expand existing federal benefits and services to assist family
caregivers.
Legislation in the 109th and 110th Congresses
The following summarizes legislation enacted in the 109th Congress to directly assist
family caregivers to older adults and identifies bills in the 110th Congress that would
expand or enhance the federal government’s role in providing direct assistance to family
caregivers. These laws and proposals are organized into the following sections:
! enhancing and expanding caregiver services and supports,
! assisting employed caregivers through flexible workplace
accommodations and income security policies, and
! providing caregivers with opportunities for additional tax credits.
Caregiver Services and Supports. Many family caregivers identify the need
for enhanced services and supports that can help them with their current caregiving
responsibilities and provide further information assistance as caregiving demands change
over time. Research provides support for services to family caregivers that can reduce
caregiver stress, avoid burnout, and allow family members to continue providing informal
care to an older relative, thus potentially avoiding or delaying unnecessary
institutionalization.6
In an effort to expand and enhance respite services to family caregivers at the federal
level, the 109th Congress passed the Lifespan Respite Care of Act of 2006. Signed by
President Bush on December 21, 2006 (P.L. 109-442), the law defines “respite care” to
mean planned or emergency care provided to a child or adult of any age with a special
need in order to provide temporary relief to the family caregiver. The Lifespan Respite
Care Act authorizes appropriations totaling $289 million for FY2007 through FY2011.
However, Congress did not provide any funds for FY2007. Thus, implementation of the
law is contingent on future appropriations.
On July 18, 2007, the House of Representatives agreed to a floor amendment
(H.Amdt. 533, Ferguson/Langevin) to the Labor, Health and Human Services, and
Education appropriations bill (H.R. 3043) that would, according to its sponsors, set aside
5 CRS Report RL34123.
6 Spillman and Long, Does High Caregiver Stress Lead to Nursing Home Entry? 2007.

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$10 million in FY2008 funding for Lifespan Respite Care. In the Senate, S. 1710 does
not include any such funding.
The Lifespan Respite Care Act authorizes the Secretary of the Department of Health
and Human Services (HHS) to award matching grants to eligible state agencies to
! develop or enhance lifespan respite care activities at the state and local
levels,
! improve the statewide dissemination and coordination of respite care, and
! provide, supplement, or improve access and quality of respite care
services to family caregivers caring for children and adults.
The law also instructs the Secretary of HHS to ensure coordination of respite care
services for family caregivers by working with the National Family Caregiver Support
Program (NFCSP) and other respite care programs within HHS. P.L. 109-442 authorized
a National Resource Center on Lifespan Respite Care, which, among other
responsibilities, would provide training and technical assistance to state, community, and
nonprofit respite care programs, and offer information, referral, and educational programs
on lifespan respite care to the public.
Legislation enacted in the 109th Congress and family caregiver legislation proposals
in the 110th Congress have sought to target services and supports to those caring for an
individual with physical disabilities, Alzheimer’s disease, or other chronic conditions.
The Older Americans Act (OAA) gives priority for NFCSP services to caregivers who are
older individuals (i.e., those aged 60 and older) with greatest economic or social need, and
with particular attention to low-income older individuals. The 109th Congress amended
the OAA (P.L. 109-365) to clarify that priority for NFCSP services is also given to older
individuals who are providing care to persons with severe disabilities (including children
with severe disabilities). P.L. 109-365 also required the state to give priority to those
caregivers providing assistance to persons aged 60 and over with Alzheimer’s disease and
related neurological disorders.7
Introduced in the 110th Congress, S. 898/H.R. 1560 (Mikulski/Markey) would,
among other things, authorize program funding for the Alzheimer’s Demonstration Grant
Program from $12 million in FY2007 to $20 million in FY2008 through FY2012. It also
would authorize the Alzheimer’s 24/7 Call Center, which provides caregivers with crisis
assistance and decision-making support, as well as referrals to local community programs
and services. On August 3, 2007, S. 898 was reported by the Senate Committee on
Health, Education, Labor, and Pensions with an amendment in nature of a substitute.
7 The NFCSP provides direct services for caregivers, including information and assistance
accessing available long-term care services; individual counseling, support groups, and caregiver
training; respite care services to provide families temporary relief from caregiving
responsibilities; and supplemental services on a limited basis (e.g., adult day health care, home
care, home modifications, incontinence supplies, nutritional supplies, assistive devices). For
further information on the NFCSP, see [http://www.aoa.gov/prof/aoaprog/caregiver/overview/
overview_caregiver.asp].

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Another bill reintroduced in the 110th Congress, H.R. 1032 (Waters), would make
grants to public and private health-care providers, including senior centers and area
agencies on aging, to provide training and support services for families and caregivers of
Alzheimer’s patients, among other things. S. 1340/H.R. 2244 (Lincoln/Green) would
offer family caregiver education and counseling as part of a proposed chronic care
assessment and coordination benefit under Medicare. The bill would also include family
caregivers in the process of planning and implementing beneficiaries’ care plans.
Workplace Accommodations and Income Security. Employed family
caregivers often face disruptions in their work patterns as a result of elder care
responsibilities. These disruptions may include arriving to work late or leaving early,
taking time off during the day, reducing the number of hours worked from full-time to
part-time status, or taking a leave of absence. Major changes to employee work schedules
and work disruptions can affect income and job security. The following proposals can
directly assist family caregivers by allowing for workplace accommodations or providing
income security to current employees and retirees.
Several proposals have suggested broadening the Family Medical Leave Act (FMLA,
P.L. 103-3) to make the law’s requirements an option for more employees. Under current
law, the FMLA requires private employers with at least 50 employees employed within
75 miles, and public employers, regardless of size, to extend job-protected, unpaid leave
to employees who meet length-of-service and hours-of-work eligibility requirements.
Covered, eligible employees are entitled to 12 weeks of unpaid leave per year. Employees
can also invoke FMLA to care for a newborn, newly adopted, or newly placed foster child
and to attend to their own serious health condition. The FMLA makes it possible for
covered workers who take time off to care for a parent, spouse, or child with a serious
health condition to do so without fear of jeopardizing their jobs.
Two proposals introduced in the 110th Congress would broaden FMLA eligibility by
lowering the threshold for coverage of private sector employers from 50 to 25 or 15
employees (H.R. 1369/Maloney and H.R. 2392/Woolsey, respectively).8 Few of the
proposals to expand coverage under FMLA have dealt specifically with family caregiving
to the older population. For example, legislative proposals introduced in prior Congresses
(108th Congress, H.R. 1430/Maloney) would have broadened the care recipient groups
under the statute beyond the employee’s own parent, spouse, or child to include elderly
relatives such as a parent-in-law or grandparent, in addition to other individuals (e.g.,
domestic partner, non-disabled children aged 18 or older). Another proposal (108th
Congress, H.R. 956/Maloney) would have expanded the type of activities for which
FMLA can be taken, such as allowing leave for transporting older relatives to medical and
dental appointments and for visiting them in nursing or group homes, among other things.
Other legislative proposals would require employers to provide paid time off to their
employees for their own medical needs or to care for the medical needs of certain family
members. Reintroduced in the 110th Congress, S. 910/H.R. 1542 (Kennedy/De Lauro)
would require certain employers to provide minimum paid sick leave benefits to eligible
workers. S. 1681 (Dodd) uses employer and employee contributions to create a trust fund
8 For further information, see CRS Report RL31760, The Family and Medical Leave Act: Recent
Legislative and Regulatory Activity, by Linda Levine.

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that would partially compensate eligible workers on job-protected leave for FMLA
reasons. Other proposals, H.R. 1369 and H.R. 2392, mentioned above, would also
authorize grants to state and local governments for wage replacement for eligible
individuals who take leave from employment to respond to family caregiving needs.
Those who leave the workforce to care for an older disabled family member have
less opportunity to save or accrue benefits over their lifetimes, which may leave them
economically vulnerable in retirement. One proposal designed to alleviate the long-term
financial affects for caregivers would amend the Social Security Act with respect to
determining entitlement for Old Age, Survivors and Disability Insurance (OASDI). H.R.
1161 (Lowey), reintroduced in the 110th Congress, would deem an individual to have been
paid a wage (according to a specified formula) for each month during which the
individual provided care to a dependent relative, of any age, for at least 80 hours without
monetary compensation, for a maximum of five years.
Tax Credits. Policy makers have also suggested additional tax relief measures that
would directly assist families caring for a disabled older individual. Tax provisions
include targeted tax relief to family caregivers and broadening the dependent definition
under the Dependent Care Tax Credit (DCTC).9 In the past three Congresses, several bills
have been introduced that would provide a tax credit to directly assist family caregivers.
In the 110th Congress, S. 897/H.R. 1807 (Mikulski/Johnson) would allow a phased-in
income tax credit for family caregivers of spouses and dependents who have long-term
care needs, among other things. The tax credit would amount to $1,000 in 2007,
increasing to a maximum of $3,000 in 2011.
Other proposals have suggested changes to the DCTC. These changes would expand
either the tax credit amount or the eligible dependent population. Two bills in the 110th
Congress, H.R. 1911 (Donnelly) and S. 614 (Schumer), include provisions to expand the
DCTC to taxpayers with caregiving expenses for a physically or mentally incapacitated
parent or grandparent who does not live with the taxpayer. Another bill, H.R. 1871
(Gillibrand), would increase the tax credit to 40% of qualified employment-related
expenses for taxpayers with adjusted gross incomes (AGIs) of $100,000 or less. Past
proposals have included expanding the definition of dependent care expenses to include
eldercare-related expenses and services (109th Congress, S. 1826/Kohl).
9 The DCTC provides eligible taxpayers a tax credit to offset some costs of formal care for a
qualifying child or a disabled spouse or dependent. The DCTC is limited to circumstances in
which the child or dependent care is necessary for the taxpayer’s employment (Sec. 21 of the
Internal Revenue Code). For further information on the DCTC, see CRS Report RS21466,
Dependent Care: Current Tax Benefits and Legislative Issues, by Christine Scott; for information
on the DCTC as it applies to family caregivers, see CRS Report RL34123.

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