Family caregiving is typically at the core of what sustains frail elders and adults with disabilities, yet caregivers often make major sacrifices to help loved ones remain in their homes. Family Caregiver Alliance (FCA) – founded 30 years ago in 1977 – serves as a public voice for these caregivers, illuminating the daily challenges they face, offering them the assistance they so desperately need and deserve, and championing their cause through education, services, research and advocacy. Long recognized as a pioneer among caregiver organizations, FCA operates programs at local, state and national levels. FCA provides direct services to family caregivers in the San Francisco Bay Area and is the lead agency and model for California’s statewide system of Caregiver Resource Centers. Since 2001, FCA’s National Center on Caregiving (NCC) has advanced the development of high-quality, cost-effective policies and programs for family caregivers at the national level and in every state in the country.
FCA supports a national agenda to strengthen policies and federal initiatives that recognize and support the estimated 44.4 million family caregivers in the United States. A federal investment in caregiver support is needed now more than ever. Today, the enormous pressures and risks of family caregiving, including burnout, compromised health, depression and depletion of financial resources, are a reality of daily life for millions of American families. Families need information and their own support services to preserve the critical role that they play in the nation’s long-term care system, 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 constraints and out-dated policies. The federal government can help by taking steps to ensure that all family caregivers have access to caregiver assistance and practical and affordable home and community-based services.
FCA supports a national agenda to:
Authorize and fund a National Resource Center on Caregiving
Congress should establish a National Resource Center on Caregiving to strengthen its commitment to America’s caregiving families, to help address our nation’s long-term care crisis, and to provide meaningful and quality services and supports for unpaid caregivers. The Center would serve as a clearinghouse for “best practices” in family caregiver services and provide information, support, training and technical assistance to federal and state initiatives and programs that help ease the burdens on our nation’s family caregivers. Investing in innovation, promising practices and technical assistance is a cost-effective strategy to assist the federal and state governments, policy makers, researchers, and service providers in responding to the large and growing needs of unpaid, family caregivers.
Modernize Medicare and Medicaid to better support family caregivers
Improve hospital discharge and post-acute care under Medicare. Steps should be taken to require that an assessment of both the family caregiver’s needs and those of the beneficiary, as well as appropriate caregiver education and training, be made part of a “safe and adequate discharge” from hospital to home.
Establish a caregiver assessment demonstration in Medicaid Aged/Disabled Home and Community-Based Services (HCBS) Waiver programs. This demonstration project would provide incentives for states to include an assessment of a caregiver’s own needs in existing assessment processes for HCBS, with linkage to appropriate supports, whenever the Medicaid beneficiary’s individualized plan of care cannot be implemented without the family caregiver. By assessing the family caregiver’s health, willingness to provide care, and training and support needs, this enhanced model would promote beneficiary and family-centered care and help assure the health and safety of Medicaid beneficiaries who are served in the community rather than in nursing homes.
Commission an Institute of Medicine (IOM) study on family caregiving
Congress should request and fund an IOM study and policy blueprint on family caregiving in the United States. The study should include an examination of approaches to improve: 1) care coordination and transitional care across health care and social service settings which include families as part of the care team; 2) caregiver assessment protocols and standards in public programs when a person’s care plan depends on assistance from the caregiver; 3) evidence-based programs of caregiver support services; and 4) strategies for mitigating the financial problems families face when providing long-term care. An IOM report would provide the federal government and the public with the high-level independent guidance and policy blueprint that America’s family caregivers need.
Expand caregiver support services for family members of wounded Armed Forces personnel and veterans
Congress should include family caregivers in legislation and other initiatives that address the physical and mental health conditions, including traumatic brain injury, of veterans and soldiers returning from war. Legislative proposals should recognize that family members are the mainstay of care and support for soldiers returning home and include the provision of caregiver education, counseling and other family-centered support services. In addition, Congress should provide adequate funding to the Defense Department to establish a Traumatic Brain Injury Panel and to develop and disseminate curricula for families caring for wounded soldiers and veterans with head injuries, as specified in the Defense Authorization Act for FY 2007 (P.L. 109-364).
Provide adequate funding for programs that assist family caregivers
Double the funding for the National Family Caregiver Support Program (NFCSP) under Title III-E of the Older Americans Act.
Congress maintained funding for the NFCSP in FY 2007 at the previous year's level of $157.7 million. 1.
The NFCSP has experienced level or only modest increases in funding since its inception in 2001. For many of the nation’s family caregivers of frail elders, the NFCSP is the only program to sustain and support them in their caregiving role. Funding for the NFCSP must be doubled to the original authorization of $250 million to address the current under-funding of this vital program.
Fully fund the Lifespan Respite Care Act. Respite services offer essential relief for family caregivers so they can take a break from the demands of providing constant care. The Lifespan Respite Care Act (P.L.109-442), enacted in December 2006, authorizes funds to develop a network of respite programs at the state and local levels and provides planned or emergency respite services for family caregivers of children and adults.
Enact legislation providing refundable tax credits for family caregivers and employers
Refundable tax credits would help cover families' long-term care costs and better enable them to remain in their caregiving role. Caregiver tax credits could be structured as a standard amount for eligible taxpayers who carry out family caregiving responsibilities, as a credit for specified caregiving expenses (such as home care services, respite, food, and transportation), or as a credit for employers who provide certain long-term care services for employees and their families. To help defray future long-term care costs for families, taxpayers should also be provided with a refundable tax credit for the purchase of long-term care insurance. Refundable tax credits can help compensate for the thousands of dollars in lost wages and other expenses that family and informal caregivers at all income levels incur, and they can encourage businesses to create more family-friendly working environments. A number of bills have been introduced in recent years to provide caregiver tax incentives.
Strengthen Social Security by recognizing the work of family caregivers
Provide working “credits” in the Social Security system for family caregivers who leave the workforce to provide full-time support and care for an ill, disabled or an elderly family member. This would recognize the unpaid work of family caregivers who quit their jobs to provide care. It would also strengthen caregivers' future retirement benefits and keep them out of poverty later in life – a common risk for middle-aged caregivers, particularly women, who take time out of the workforce to care for a parent.
Expand the Family and Medical Leave Act (FMLA)
Provide wage replacement at the federal level and incentives for states to develop paid family leave policies that include job protection for all workers who choose to take the leave. These changes would reduce costs to employers and assist employees who must take time off to care for a loved one but cannot afford to do so. In addition, the definition of eligible employees under FMLA should be expanded beyond the care of immediate family members to include care for siblings, in-laws and/or grandparents. Congress should also enact legislation requiring employers to provide at least seven paid sick days annually for employees. In the absence of paid leave, working caregivers are often forced to choose between economic security and providing essential care for elderly parents, spouses or other family members.
Who are Informal Caregivers?
Most Americans have provided care to an ill or disabled loved one or know someone who has. In fact:
An estimated 44.4 million Americans provide care for adult family members and friends who, because of disabling illnesses or conditions, have limited ability to carry out daily activities such as bathing, managing medications or preparing meals
78% of adults receiving long-term care at home rely exclusively on family and friends to provide assistance
70% of people with Alzheimer’s disease live at home, where families provide at least 75% of their care.
What is the Burden of Caregiving?
Various studies have measured the impact of caregiving on daily life. Researchers have found that:
Family caregivers face a range of health risks and serious illnesses themselves
Family caregivers experience high rates of depression, stress and other mental health problems
Elderly spousal caregivers experiencing mental or emotional strain have a 63% higher risk of dying than non-caregivers.
31% of caregivers report a decrease in family savings due to caregiving responsibilities
67% of family caregivers report conflicts between caregiving and employment, resulting in reduced work hours or unpaid leave
The long-term effects of caregiving on women’s economic well-being are profound: One study found that caregiving for a parent substantially increased women’s risks of living in poverty and receiving public assistance in later life.
Why is a Federal Investment in Caregiver Support Vital?
Family caregivers are the backbone of our long-term care system. Providing them with the support services and assistance they need is critical to addressing the long-term care problem in the U.S. Services like education, counseling and respite care contribute to a caregiver's ability to provide assistance to a loved one. In turn, this can delay nursing home placement and reduce reliance on programs like Medicaid. In fact, support services for caregivers have been shown to postpone institutionalization of persons with moderate dementia by nearly a year. With the annual cost per person of nursing home care averaging $75,190, any delay means real savings to families, to government programs and to businesses. Consider:
If services provided by informal caregivers had to be replaced with paid services, it would cost an estimated $306 billion (in 2004 dollars)
Lost productivity due to informal caregiving costs businesses $17.1 billion annually
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.
While economic constraints are very real, providing support for family caregivers through publicly-funded programs isn’t just the right thing to do, it is sound fiscal policy. With creation of the Older Americans Act’s (OAA’s) National Family Caregiver Support Program (NFCSP) in 2000, Congress took an essential first step in acknowledging family caregivers’ major contributions to long-term care. Building on the success of the NFCSP, and in response to the aging of America, a national caregiving policy agenda would contribute to a more coordinated, systematic effort to recognize and strengthen the central role of families within the context of long-term care reform.
1. The NFCSP is funded by the Labor-Health and Human Services-Education Appropriations bill. Congress passed a Continuing Resolution for those programs in FY 2007, not a new appropriations bill.
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