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What do persons with disabilities deserve and want as they live through their full life span
and approach the natural progression of aging?
As the aging process continues through the life span, people with disabilities must have
every opportunity to be recognized as respected members of the community. Community
services and supports that are geared to older community members must accommodate
the supports needed by those who have also experienced lifelong disabilities.
People with disabilities who are aging should:
Be afforded the same rights, dignity, respect, and opportunities as other older
people in their communities;
Be empowered, together with their families if asked, to advocate for themselves;
Be free from discrimination on the basis of disability and/or aging;
Have access to appropriate community-based social services, transportation, legal
services, and other services;
Have access to a full array of affordable housing services appropriate to their age
and physical and mental condition;
Have access to a full array of health care services appropriate to their age and
physical and mental condition, including preventive health care, ongoing
habilitation, and rehabilitation services for as long as they are needed, including
appropriate end-of-life care;
Receive the supports they need to live, work, play, and retire when, where, and how
they prefer, including supports for family members who can assist them in the
pursuit of quality and self-determined aging experience;
Be free from the fear of inappropriate institutionalization;
Be free from the fear of elder abuse and neglect by family members, providers or
community members; and
Have access to financial supports that will provide them with retirement
opportunities like those that are available to other older people who no longer work.
Be treated just like anyone else during their natural human aging process of life.
Disability studies support the advocacy efforts of all people and their organizations to
ensure the right to have a full and healthy life for all individuals with disabilities.
Family Caregiver Alliance.
Caregiving
Introduction
Caregiving takes many forms. Many of us help older, sick, or disabled family members and
friends every day. We know we are helping, but we don’t think of ourselves as caregivers. We
are glad to do this and feel rewarded by it, but if the demands are heavy, over time we can also
become exhausted and stressed. We think we should be able to handle caregiving roles on top of
busy work and family schedules and begin to feel guilty and depressed as our stamina wanes.
About 44 million Americans provide 37 billion hours of unpaid, “informal” care each year for
adult family members and friends with chronic illnesses or conditions that prevent them from
handling daily activities such as bathing, managing medications or preparing meals on their own.
Family caregivers, particularly women, provide over 75% of caregiving support in the United
States. In 2007, the estimated economic value of family caregivers’ unpaid contributions was at
least $375 billion, which is how much it would cost to replace that care with paid services.1
Caregiving: A Universal Occupation
Who Are Caregivers?
The short answer is most of us, at some point in our lives. Caregivers are daughters, wives,
husbands, sons, grandchildren, nieces, nephews, partners and friends. While some people receive
care from paid caregivers, most rely on unpaid assistance from families, friends and neighbors.
Caregivers manage a wide range of responsibilities. In your family, for example, are you the
person who:
Buys groceries, cooks, cleans house or does laundry for someone who needs special help
doing these things?
Helps a family member get dressed, take a shower and take medicine?
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Helps with transferring someone in and out of bed, helps with physical therapy,
injections, feeding tubes or other medical procedures?
Makes medical appointments and drives to the doctor and drugstore?
Talks with the doctors, care managers and others to understand what needs to be done?
Spends time at work handling a crisis or making plans to help a family member who is
sick?
Is the designated “on-call” family member for problems?
In small doses, these jobs are manageable. But having to juggle competing caregiving demands
with the demands of your own life on an ongoing basis can be quite a challenge.
With the 65+ age group expected to double to 70 million people by 2030,2 family caregivers
increasingly provide care for aging parents, siblings, and friends, most of whom have one or
more chronic conditions3 and who wish to remain in their own homes and communities as they
age.4 Others belong to the “sandwich generation,” caring for children and parents at the same
time.
Caregiving roles and demands are impacted by a number of other factors, including:
Type of illness. Caring for someone with Alzheimer’s disease, other dementias, or other
brain-impairing disorders can be more stressful than caring for someone with a physical
impairment. Caring for someone with a cognitive disorder can be a 24/7 job due to the
unpredictability of the care recipient’s behavior.5
Long-distance caregiving. Long-distance caregiving is usually defined as care provided
by a caregiver living more than an hour away from the care recipient. Caring from a
distance is difficult both emotionally and logistically, and is most common in situations
where adult children and their parents do not live in the same area. In these cases, the
caregiver’s role is not as much “hands-on” as it is gathering information about available
resources, coordinating services and putting together a “team” of family, friends and paid
help that can meet the care recipient’s needs.
Urban versus rural settings. Caregivers living in rural settings face unique challenges.
These include fewer available formal services, fewer physicians and health education
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services, transportation difficulties, weather problems in winter, geographic distance and
isolation.6
Different cultural approaches to caregiving. The United States’ great diversity means
that families bring their own histories, traditions and rituals to caregiving. In many
cultures, there are family expectations about the caregiving roles of adult children; this is
especially true in cultures where daughters or daughters-in-law are expected to assume
the primary caregiver role for aging parents.
For some people, caregiving occurs gradually over time. For others, it can happen overnight.
Caregivers may be full- or part-time; live with their loved one or provide care from a distance.
Caregivers provide a wide range of services, from simple help such as grocery shopping, to
complex medical procedures. For the most part, friends, neighbors, and most of all, families,
provide–without pay–the vast majority of healthcare in this country.
First Steps: Help for New Caregivers
It is easy to become overwhelmed as a new caregiver. Five steps that can help are:
Start with a diagnosis. Learning about a family member’s diagnosis helps caregivers
understand the disease process and plan ahead realistically.
Talk about finances and healthcare wishes. Having these conversations can be
difficult, but completing Durable Powers of Attorney for finances and healthcare can help
relieve anxiety and better prepare for the future.
Consider inviting family and close friends to come together and discuss the care
needed. If possible, it’s helpful to include the care recipient in this meeting. This meeting
gives caregivers a chance to say what they need, plan for care and ask others for
assistance.
Take advantage of community resources such as Meals on Wheels and adult day
programs. These resources help relieve the workload and offer a break. Look for
caregiver educational programs that will increase knowledge and confidence.
Find support. The most important thing is for caregivers to not become isolated as they
take on more responsibility and as social life moves into the background. Online and in3
person groups can be very helpful in connecting with others in the same circumstances.
Caregivers can call Family Caregiver Alliance at (800) 445-8106 to learn about local
services, or visit www.caregiver.org, and click on “Family Care Navigator.”
Caregiving in the U.S.
Data from many studies and reports reveal the following information about caregivers:
The “typical” U.S. caregiver is a 46-year-old woman who works outside the home and
spends more than 20 hours per week providing unpaid care to her mother.7 Most
caregivers are married or living with a partner.8
While caregivers can be found across the age span, the majority of caregivers are middleaged (35-64 years old).9
Most caregivers are employed. Among caregivers age 50-64 years old, an estimated 60%
are working full or part-time.10
Studies show that ethnic minority caregivers provide more care than their white counterparts11 and report worse physical health than white caregivers.12
Many caregivers of older people are themselves elderly. Of those caring for someone
aged 65+, the average age of caregivers is 63 years with one third of these caregivers in
fair to poor health.13
Nearly half of caregivers provide fewer than eight hours of care per week, while nearly
one in five provide more than 40 hours of care per week.14 A statewide California study
of caregivers of adults with cognitive disorders such as Alzheimer’s showed that
caregivers provided an average of 84 hours of care per week, the equivalent of more than
two full-time jobs.15 Older caregivers often spend the most hours providing care16 and the
amount of time spent caring increases substantially as cognitive impairment worsens.17
Caregiving can last from less than a year to more than 40 years. In a 2003 study,
caregivers were found to spend an average of 4.3 years providing care. Older caregivers
(50+) are more likely to have been caregiving for more than 10 years (17%).18
Most caregivers live near the people they care for. Eighty-three percent of caregivers care
for relatives, with 24% living with the care recipient, 61% living up to one hour away,
4
and 15%—or about 7,000,000 caregivers—living a one- to two- hour drive or more
away.19
Effects of Caregiving
Impact on Physical and Emotional Health
Recent medical advances, shorter hospital stays, increasing life spans with better management of
chronic illnesses, limited discharge planning, a shortage of homecare workers, and the expansion
of home care technology have increased the caregiving responsibilities of families. Family
caregivers are being asked to shoulder greater burdens for longer periods of time. In addition to
more complex care, conflicting demands of jobs and family, increasing economic pressure, and
the physical and emotional demands of long-term caregiving can result in major health impacts
on caregivers.20
Over all, caregivers who experience the greatest emotional stress tend to be female. They are at
risk for high levels of stress, frustration, anxiety, exhaustion and anger, depression, increased use
of alcohol or other substances, reduced immune response, poor physical health and more chronic
conditions, neglecting their own care and have higher mortality rates compared to
noncaregivers.21
In addition, most caregivers are ill-prepared for their role and provide care with little or no
support;22 yet more than one-third of caregivers continue to provide intense care to others while
suffering from poor health themselves.23 An influential factor in a caregiver’s decision to place
an impaired relative in a long-term care facility is the family caregiver’s own physical health.24
Financial Issues
Long term caregiving has significant financial consequences for caregivers, particularly for
women. Informal caregivers personally lose about $659,139 over a lifetime: $25,494 in Social
Security benefits; $67,202 in pension benefits; and $566,443 in forgone wages.
Caregivers face the loss of income of the care recipient, loss of their own income if they reduce
their work hours or leave their jobs, loss of employer-based medical benefits, shrinking of
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savings to pay caregiving costs, and a threat to their retirement income due to fewer
contributions to pensions and other retirement vehicles.25
Work and Eldercare
Caregiving also has a substantial impact on business. Lost productivity due to informal
caregiving costs businesses $17.1 billion annually.26 Absenteeism, replacing employees who quit
in order to provide care and other caregiving-related activities also have serious financial
consequences to employers. For instance
The cost to businesses to replace women caregivers who quit their jobs because of their
caregiving responsibilities has been estimated at $3.3 billion.
Absenteeism among women caregivers due to caregiving responsibilities costs businesses
almost $270 million.
The cost to businesses because of partial absenteeism (e.g., extended lunch breaks,
leaving work early or arriving late) due to women’s caregiving has been estimated at
$327 million. Caregiving-related workday interruptions add another $3.8 billion to the
burden borne by businesses.27
Working caregivers often suffer many work-related difficulties due to their “second careers” as
caregivers. Sixty-seven percent of family caregivers report conflicts between caregiving and
employment, resulting in reduced work hours or unpaid leave.28
The importance of eldercare is now recognized by a growing number of employers, with
movement toward more flexible work schedules, “cafeteria style” benefits, in-house support
groups, and education, information, and referrals provided through employee assistance
programs.
Policy changes have also supported family caregivers. Companies with 50 or more employees
must comply with the Family and Medical Leave Act (FMLA), which allows for up to 12 weeks
of unpaid leave to care for a seriously ill parent, spouse or child, while protecting job security.
Smaller firms can use the FMLA guidelines to provide support for individual employees. Paid
Family Leave (PFL) provides workers with a maximum of six weeks of partial pay each year
while taking time off from work to care for a seriously ill parent, child, spouse or registered
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domestic partner, and has been instituted in several states, including California. Policy changes
that could also benefit family caregivers include paid sick leave that can be used by employees
for themselves or to care for family members and expanding FMLA beyond immediate family
members to include care for siblings, in-laws and grandparents.29
Legal Issues
It is important to make legal preparations in the event a parent becomes cognitively impaired.
Typical concerns include who will manage the confused person’s money, who will make
important health care decisions and how to plan for long-term care.
An attorney can help plan for the financial aspects of long-term care needs, assist with surrogate
decision-making tools such as the durable power of attorney (DPA) and a durable power of
attorney for health care (DPAHC), and provide guidance in obtaining a conservatorship should
the care recipient lack the capacity to make decisions. A conservatorship provides the legal
authority to manage a person’s finances, estate, personal affairs, assets and medical care.30
The Need for Support
Because of the multi-faceted role that family and informal caregivers play, they need a range of
support services to remain healthy, improve their caregiving skills and remain in their caregiving
role. Support services include information, assistance, counseling, respite, home modifications or
assistive devices, caregiver and family counseling, and support groups. While many services are
available through local government agencies, service organizations, or faith-based organizations,
employers’ programs also can mitigate the impact that caregiving can have on workers.
Services that improve caregiver depression, anxiety and anger benefit both the caregiver and the
care recipient.31 Evidence also shows that caregiver support delays or prevents nursing home
placement; people with moderate dementia have been able to defer placement by nearly 1.5 years
when their family members receive caregiver services, including counseling, information and
ongoing support.32
Policy Implications
Family caregiving is the backbone of the United States’ long term care system as well as the core
of what sustains frail elders and adults with disabilities, yet caregivers often make major
7
sacrifices to help loved ones remain in their homes. A federal investment in family caregiver
support is needed now more than ever.
A national agenda is needed that:
Supports the National Family Caregiver Support Program (NFCSP) to provide caregivers
with information and assistance, counseling, support groups, respite, caregiver training
and limited supplemental services.
Funds Lifespan Respite Care so that family caregivers can take a break from the demands
of providing constant care
Expands the Family and Medical Leave Act (FMLA) and paid leave policies to increase
financial support for workers providing essential care for family members.
Promotes financial incentives, career advancement, geriatric education and training, and
long-term care policies to expand the geriatric care workforce.
Enacts legislation providing refundable tax credits for family caregivers to defray longterm care costs and compensate for expenses that family and informal caregivers at all
income levels incur.
Strengthen Social Security by recognizing the work of family caregivers who leave the
workforce to provide full-time support and care for an ill, disabled or an elderly family
member.
Conclusion
With the dramatic aging of the population, we will be relying even more on families to provide
care for their aging parents, relatives and friends for months and years at a time. Yet, the
enormous pressures and risks of family caregiving—burnout, compromised health, depression
and depletion of financial resources—are a reality of daily life for millions of American families
and pose great strain on family caregivers, many of whom are struggling to balance work and
family responsibilities.
Families need information and their own support services to preserve their critical role as
caregivers, but frequently they do not know where to turn for help. When they do seek
assistance, many community agencies cannot provide adequate supports due to funding
8
constraints and outdated policies. The federal government can help by taking steps to ensure that
all family caregivers have access to caregiver assistance and to practical, high quality, and
affordable home and community-based services. These are tough economic times, but supporting
family caregivers is one of the most cost-effective long-term care investments we can make. As
long as caregivers are able to provide care, they are often able to delay costly nursing home
placements and reduce reliance on programs like Medicaid.
Credits
Family Caregiver Alliance, “2009 National Policy Statement.”
Family Caregiver Alliance, Family Caregiving and Long-Term Care: A Crucial Issue for
America’s Families, Policy Brief. San Francisco, CA, June 2004.
Family Caregiver Alliance, Caregiver Assessment: Principles, Guidelines and Strategies for
Change, Volume 1. San Francisco, CA, April 2006.
Family Caregiver Alliance, Caregiving and Retirement Planning: What Happens to Family
Caregivers Who Leave the Work Force, Policy Brief, December 2003.
Family Caregiver Alliance, “Caring in Rural Communities,” Update, Winter 2006.
AARP Public Policy Institute, Valuing the Invaluable: The Economic Value of Family
Caregiving, 2008 Update, November 2008.
American Journal of Nursing, “State of the Science: Professional Partners Supporting Family
Caregivers.” 108, N0. 9 Supplement. New York, NY: Lippincolt Willliams & Wilkins,
September 2008.
Easter Seals and National Alliance for Caregiving, Caregiving in Rural America, October 2007.
HarrisInteractive and GlaxoSmithKline, “Improving the Patient-Physician Relationship,” 2003.
National Alliance for Caregiving and AARP, Caregiving in the U.S., April 2004.
References
1
National Alliance for Caregiving and AARP. Caregiving in the U.S. Bethesda: Washington,
DC: AARP Public Policy Institute, Valuing the Invaluable: The Economic Value of Family
Caregiving, 2008 Update. Washington, DC: 2008; Family Caregiver Alliance, Family
Caregiving and Long-Term Care: A Crucial Issue for America’s Families, Policy Brief. San
Francisco, CA: June 2004.
2
Family Caregiver Alliance, Family Caregiving and Long-Term Care: A Crucial Issue for
America’s Families, Policy Brief. San Francisco, CA: June 2004.
3
Chronic Care in America, GlaxoSmithKline and HarrisInteractive, 2003.
4
Beyond 50.05: A Report to the Nation on Livable Communities, AARP, May 2005.
5
Family Caregiver Alliance Fact Sheet, Is This Dementia and What Does It Mean?, 2008; Fact
Sheet, Caregiver’s Guide to Understanding Dementia Behaviors, 2008; National Alliance for
9
Caregiving and AARP; Caregiving in the U.S.
6
Family Caregiver Alliance, Caring in Rural Communities; Easter Seals and the National
Alliance for Caregiving, Caregiving in Rural America, October 2007.
7
National Alliance for Caregiving and AARP. Caregiving in the U.S. Bethesda: National
Alliance for Caregiving, and Washington, DC: AARP, April 2004.
8
National Alliance for Caregiving and AARP; Caregiving in the U.S. Bethesda: National
Alliance for Caregiving, and Washington, DC: AARP, 2004.
9
National Alliance for Caregiving and AARP. Caregiving in the U.S. Bethesda: National
Alliance for Caregiving, and Washington, DC: AARP, 2004; Alecxih, L. M. B., S. Zeruld, and
B. Olearczyl, Characteristics of Caregivers Based on the Survey of Income and Program
Participation, Falls Church, VA: The Lewin Group, 2001.
10
AARP. Beyond 50.03: A Report to the Nation on Independent Living and Disability.
Washington DC: AARP, 2003.
11
McCann, J.J., L.E. Hebert, L.A. Beckett, M.C. Morris, P.A. Scherr, and D.A. Evans. 2000.
“Comparison of Informal Caregiving by Black and White Older Adults in a Community
Population.” Journal of the American Geriatrics Society 48:1612-1617; Pinquart, M. and S.
Sorenson. 2005. “Ethnic Differences in Stressors,” Resources, and Psychological Outcomes of
Family Caregiving: A Meta-Analysis. The Gerontologist 45: 90-106.
12
Pinquart, M. and S. Sorenson. 2005. “Ethnic Differences in Stressors, Resources, and
Psychological Outcomes of Family Caregiving: A Meta-Analysis,” The Gerontologist 45: 90106.
13
Administration on Aging, NFCSP Complete Resource Guide, September 9, 2004
14
National Alliance for Caregiving and AARP. Caregiving in the U.S. Bethesda: National
Alliance for Caregiving, and Washington, DC: AARP, 2004.
15
Family Caregiver Alliance, “Caregivers at Risk,” 2004/05.
16
Partnership for Solutions. “Chronic conditions: Making the case for ongoing care.” Baltimore:
Johns Hopkins University, 2002.
17
Langa K.M., M. Chernew, M. Kabeto, A.R. Herzog, M.B. Ofstedal, R. Willis, R. Wallace, L.
Mucha, W. Straus, AM. Fendrick. 2001. “National Estimates of the Quantity and Cost of
Informal Caregiving for the Elderly with Dementia.” Journal of General Internal Medicine 16:
770-778.
10
18
National Alliance for Caregiving and AARP. Caregiving in the U.S. Bethesda: National
Alliance for Caregiving, and Washington, DC: AARP, 2004.
19
National Alliance for Caregiving and AARP. Caregiving in the U.S. Bethesda: National
Alliance for Caregiving, and Washington, DC: AARP, 2004.
20
Family Caregiver Alliance, “Caregiving in California.” Issue Paper #1, 2007.
21
Family Caregiver Alliance, Caregiving in California: Issue Paper #1, 2007; National Alliance
for Caregiving and AARP. Caregiving in the U.S. Bethesda: National Alliance for Caregiving,
and Washington, DC: AARP, 2004.
22
National Alliance for Caregiving & AARP. (2004). Caregiving in the U.S. Alzheimer’s
Association & National Alliance for Caregiving. (2004); Families Care: Alzheimer’s Caregiving
in the United States. Chicago, IL: Alzheimer’s Association and Bethesda, MD: National Alliance
for Caregiving; Family Caregiver Alliance (2006). Caregiver Assessment: Principles, Guidelines
and Strategies for Change. Report from a National Consensus Development Conference (Vol. I).
San Francisco: Author.
23
Navaie-Waliser, M., Feldman, P.H., Gould, D.A., Levine, C.L., Kuerbis, A.N. & Donelan, K.
(2002). “When the caregiver needs care: The plight of vulnerable caregivers.” American Journal
of Public Health, 92(3), 409–413
24
Buhr, G.T., Kuchibhatla, M., & Clipp, E. (2006). “Caregivers’ reasons for nursing home
placement: Cues for improving discussions with families prior to the transition.” The
Gerontologist, 46(1): 52-61; Whitlatch, C.J., Feinberg, L.F., & Sebesta, D.S. (1997).
“Depression and health in family caregivers.” Journal of Aging and Health, Vol.9 (2), 222-243;
Whitlatch, C.J., Feinberg, L.F., & Stevens, E.J. (1999). “Predictors of institutionalization for
persons with Alzheimer’s disease and the impact on family caregivers.” Journal of Mental
Health and Aging, Vol. 5(3). 275-288; Lieberman, M.A. & Kramer, J.H. (1991). “Factors
affecting decisions to institutionalize demented elderly.” The Gerontologist, 31, 371-374.
25
AARP Public Policy Institute, Valuing the Invaluable: The Economic Value of Family
Caregiving, 2008 Update. Washington, DC: AARP, November 2008.
26
Family Caregiver Alliance, 2009 National Policy Statement.
27
Metropolitan Life Insurance Company and National Alliance for Caregiving. (1997, June). The
Metlife study of employer costs for working caregivers. Connecticut: Metropolitan Life Insurance
Company.
11
28
Family Caregiver Alliance, 2009 National Policy Statement.
29
Family Caregiver Alliance, Fact Sheet: Work and Eldercare Fact Sheet, 1999; Family
Caregiver Alliance, 2009 National Policy Statement.
30
Family Caregiver Alliance, Fact Sheet: Work and Eldercare, 1999.
31
Schulz, R., O’Brien, A., Czaja, S., Ory, M., Norris, R., Martire, L.M., Belle, S.H., Burgio, L.,
Gitlin, L., Coon, D., Burns, R., Gallagher-Thompson, D., and Stevens, A. 2002. “Dementia
Caregiver Intervention Research: In Search of Clinical Significance.” The Gerontologist 42:589602; Bookwala, J., Zdaniuk, B., Burton, L., Lind, B., Jackson, S., Schulz, R. 2004. “Concurrent
and Long-Term Predictors of Older Adults’ Use of Community-Based Long-Term Care
Services: The Caregiver Health Effects Study.” Journal of Aging and Health 16: 88-115; Zarit,
S.H., Stephens, M.A.P., Townsend, A. and Greene, R. 1998. “Stress Reduction for Family
Caregivers: Effects of Adult Day Care Use.” Journal of Gerontology: Social Sciences 53B:S267S277.
32
AARP Public Policy Institute, Valuing the Invaluable: The Economic Value of Family
Caregiving, 2008 Update. Washington, DC: AARP, November 2008; Mittelman, M. S., Haley,
W., & Roth, D. 2006. “Improving Caregiver Well-being Delays Nursing Home Placement of
Patients with Alzheimer’s Disease.” Neurology, 67, 1592-1599.
Resources for Caregivers
Family Caregiver Alliance
National Center on Caregiving
(415) 434-3388 | (800) 445-8106
Website: www.caregiver.org
Email: info@caregiver.org
FCA CareJourney: www.caregiver.org/carejourney
Family Care Navigator: www.caregiver.org/family-care-navigator
Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through
education, services, research, and advocacy. Through its National Center on Caregiving, FCA
offers information on current social, public policy, and caregiving issues and provides assistance
in the development of public and private programs for caregivers. For residents of the greater
San Francisco Bay Area, FCA provides direct support services for caregivers of those with
12
Alzheimerʼs disease, stroke, traumatic brain injury, Parkinsonʼs, and other debilitating disorders
that strike adults.
FCA Fact Sheets
www.caregiver.org/fact-sheets
Alzheimer’s Disease
Caregiver Health
Caregiver’s Guide to Understanding Dementia Behaviors
Is This Dementia & What Does It Mean?
Legal Issues in Planning for Incapacity
Taking Care of YOU: Self-Care for Family
Women and Caregiving: Facts and Figures
Work and Eldercare
Eldercare Locator
www.eldercare.acl.gov
(800) 677-1116
Medicare
www.medicare.gov
National Alliance for Caregiving
www.caregiving.org
AGIS
www.agis.com
AARP
www.aarp.org
Family Caregiver Alliance. https://www.caregiver.org/caregiving
13
Law to Protect the Rights and Well-being of Older Americans
Older Americans Act of 1965
Introduction
The Older Americans Act (OAA), originally enacted in 1965, supports a range of home and
community-based services, such as meals-on-wheels and other nutrition programs, in-home
services, transportation, legal services, elder abuse prevention and caregivers support. These
programs help seniors stay as independent as possible in their homes and communities. In
addition, OAA services help seniors avoid hospitalization and nursing home care and, as a
result, save federal and state funds that otherwise would be spent on such care.
Who Benefits from the Older Americans Act?
The intent of the OAA is to promote the dignity of older adults by providing services and
supports that enable them to remain independent and engaged citizens within their
communities. The original OAA established the Administration on Aging (AoA) and the aging
services network that provides essential home and community-based supportive services. AoA
is now part of the Administration for Community Living (ACL) within the Department of Health
and Human Services (DHHS). OAA funding is distributed to 56 state agencies, over 200 tribal
organizations, two native Hawaiian organizations, more than 600 area agencies on aging and
20,000 local service providers. While the program is open to older individuals, generally defined
as 60 and older, it focuses on offering assistance to persons with the greatest social or
economic need, such as low-income or older adults living in rural areas. Most services do not
require means testing or copayments, but donations may be requested and some newer
programs may have cost sharing on a sliding scale. Unfortunately, years of limited funding have
restricted access to OAA services, resulting in waiting lists for many of these essential programs.
The benefits of OAA programs are not just for older adults. They also support families by
offering services to caregivers, and they provide jobs in the health and long-term care sectors in
local communities around the country.
What are the Benefits?
The OAA authorizes a range of services and supports that help older Americans remain as
independent and productive as possible in their own homes and communities. The OAA
consists of seven titles. Titles I and II declare the Act’s objectives and establish the AoA, the
federal coordinating agency for OAA services. Title III – Grants for States and Community
Programs on Aging – covers supportive services such as case management, senior center
services, in-home services, transportation, and information and referral. Also included under
Title III are nutrition programs, such as meals-on-wheels and senior center group meals; family
1
caregiver support; and health promotion and disease prevention services. Funds for Title III
programs are distributed based on a state’s proportionate share of either the age 60 or older
population or, in the case of caregiver support programs, the age 70 or older population. Each
state then has its own formula for allocating OAA funding to area agencies on aging which
enables the delivery of services to local areas.
Title IV of the OAA provides support for training, research and demonstration projects while
Title V authorizes the Senior Community Service Employment Program (SCSEP). This program,
which is managed by the Department of Labor, provides support for part-time employment for
individuals 55 and over who are low-income, unemployed and have poor employment
potential. Title VI covers Grants for Services for Native Americans and provides funding to tribal
organizations, Native Alaskan organizations and nonprofits representing Native Hawaiians.
Finally, Title VII provides support for programs to ensure protection of the rights of older adults,
including the Long-Term Care Ombudsman Program and elder abuse prevention services. The
Long-Term Care Ombudsman Program is required to investigate and resolve complaints made
by or on behalf of nursing facility residents or other institutionalized populations. Title VII funds
are allocated based on the state’s proportion of residents age 60 and older.
OAA Funding
The Older Americans Act has a broad and critical mission. However, it is plagued with modest
resources to support the service continuum. Over the past 20 years, the OAA has lost ground
due to our rapidly-increasing frail, older population, and federal funding that has not kept pace
with either inflation or growth in the older population. Eligible seniors face waiting periods for
many OAA services in most states.
The Budget Control Act of 2011 imposed cuts in non-defense discretionary (NDD) spending,
which includes OAA programs, and resulted in dramatic reductions in senior nutrition and other
programs in Fiscal Year (FY) 2013. Under provisions of the Bipartisan Budget Act of 2013, FY
2014 and 2015 funding was restored to pre-sequestration levels for nutrition programs, but
other programs received less money than they did in FY 2012. President Obama’s FY 2017
budget proposes an increase of $28.4 million for the OAA, including $10 million for Older
Americans Act Title III B Supportive Services and $14.4 million for Title III Nutrition programs.
Other programs are flat funded, with requested amounts remaining the same as the programs
received for FY 2016 due to the 2015 Bipartisan Budget Agreement.
The cumulative impact of decades of inadequate funding, a rapidly growing older population
and unbalanced attempts at deficit reduction could threaten the very sustainability of OAA
programs, as well as the health, dignity, and independence of older Americans. The Leadership
Council of Aging Organizations (a coalition of 72 non-profit organizations serving seniors,
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including the National Committee) determined that in order for OAA funding to simply catch up
with the growth in the senior population, its appropriation would have to be increased by at
least 12 percent each year for several years.
OAA Reauthorization
The Older Americans Act Reauthorization Act, S. 192, was signed into law (Public Law 114144) by President Obama on April 19, 2016. This bipartisan legislation was introduced by
Senators Lamar Alexander (R-TN), Patty Murray (D-WA), Richard Burr (R-NC) and Bernie
Sanders (I-VT). It reauthorizes the OAA for three years and makes improvements to benefit
older Americans and their families. The major provisions of P.L. 114-144 are outlined in a fact
sheet from the House Committee on Education and the Workforce.
NATIONAL COMMITTEE POSITION
The National Committee supports increased funding for Older Americans Act (OAA) programs
to provide for the needs of our growing elderly population and to make up for past years of
cuts in OAA services resulting from federal funding not keeping pace with inflation. The
National Committee supported S. 192, the “Older Americans Act Reauthorization Act of 2016,”
now Public Law 114-144, which reauthorizes the OAA for three years and provides muchneeded assistance to older Americans. In particular, the National Committee supports
provisions in the law that:
Make improvements to the core programs of the Older Americans Act – including
congregate and home-delivered meals, assistance for family caregivers, transportation
and senior services – which would help ensure economic security and the ability of
seniors to receive the supports and services they need to stay healthy and active in their
homes and communities.
Protect against elder abuse and strengthen long-term care ombudsman services.
Research shows a direct connection between elder abuse and increased need for costly
services, such as nursing home care. Thus, beyond the ethical obligation to protect
vulnerable older adults, these changes have the potential to achieve savings in other
programs such as Medicare and Medicaid.
Promote healthy living through programs including fall prevention and chronic disease
self-management. These programs improve the quality of life for individuals and
prevent unnecessary medical costs.
As introduced, S. 192 would have revised and improved the Experimental Consumer Price Index
for the Elderly (CPI-E). Beyond health and social services, many older Americans rely on Social
Security benefits that are appropriately adjusted annually for inflation. For that reason, the
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National Committee strongly supports requiring the Bureau of Labor Statistics to revise and
improve the Experimental Consumer Price Index for the Elderly (CPI-E), and regrets that this
proposal was not included in Public Law 114-144. Adopting a fully-developed CPI-E that more
accurately reflects the expenses faced by seniors as the measure for calculating the Social
Security cost-of-living adjustment (COLA) would help ensure economic security for beneficiaries
as they age.
References:
National Committee to Preserve Social Security & Medicare. www.ncpssm.org
Government Relations and Policy, April 2016. Retrieved from:
http://www.ncpssm.org/PublicPolicy/OlderAmericans/Documents/ArticleID/1171/Older-Americans-Act
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