National Policy Statement

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National Policy Statement

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 over 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.

A federal Investment in family caregiver support is needed now more than ever. FCA supports a national agenda to strengthen policies and federal initiatives that recognize and support the estimated 44 million family caregivers in the United States. We strongly encourage the new Obama Administration and Congress to initiate and support policies that take family caregivers into account and sustain them in their role as the primary providers of long-term care in this country. 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 even 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 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 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.

We encourage the Obama Administration and Congress to support a national agenda that will:

  • 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 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 be made part of a "safe and adequate discharge" from hospital to home. Appropriate caregiver education and training should also be provided.

    • 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.

    • Ensure access to care coordination services. Medicare should cover care coordination services for beneficiaries with multiple chronic conditions. Such services should include comprehensive geriatric assessments of the beneficiary and the needs of the family caregiver, ongoing support regarding a plan of care in coordination with all physicians, medical personnel, home care providers, social service agencies and family members providing care to the beneficiary, and consultation with the family caregiver in the chronic care planning process. When done well, care coordination services can ease the burden on family caregivers by helping them develop and implement care plans; by facilitating communication between health care providers and with social service providers; by helping them navigate the systems of care, access needed services, and anticipate and plan for future needs; and by recognizing and addressing their needs, separate from the care recipient.

  • 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.

  • 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 provided $153.4 million for the NFCSP in FY 2008. The program has experienced level or only modest increases in funding since its inception in 2001. The NFCSP provides caregivers with information and assistance, counseling and support groups, respite, caregiver training and limited supplemental services. By providing these essential services through Area Agencies on Aging, the NFCSP is often the only program to sustain and support many of the nation's families 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. Authorized at $71.1 million for FY 2010, Lifespan Respite has yet to be funded by Congress.

  • Expand the Family and Medical Leave Act (FMLA) and other paid leave policies
    New FMLA regulations implemented at the end of the Bush Administration make it more difficult for workers to use FMLA leave and grant employers new privileges that compromise workers' privacy and rights. Not only must those regulations be reversed, but FMLA and other paid leave policies should be expanded. The Administration and Congress should promote wage replacement policies at the federal and state levels, in part by providing incentives for states to develop paid family leave policies that include job protection for all workers who choose to take the leave. These policies 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 grandparents. Congress should also enact legislation requiring employers to provide at least seven paid sick days annually for all 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.

  • Promote policies that expand the geriatric care workforce
    There is a severe shortage of health care professionals, social workers and direct care workers trained to work with older adults. As a result, many older adults are unable to find appropriate health care and other services that best fit their needs and conditions, and family caregivers face increased strains. Congress should enact legislation providing financial incentives (including loan forgiveness) and career advancement opportunities and expanding education and training opportunities in geriatrics and long-term care to health care professionals and direct care workers dedicated to working with older adults. As the Institute on Medicine requested in a recent report, it is critical that the federal government work to remedy this situation by implementing policies that will help attract and retain a qualified workforce trained to work with the growing population of older adults.

  • Enact legislation providing refundable tax credits for family caregivers and employers
    Caregiver tax credits could be structured as a standard amount for eligible taxpayers with 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 policies.

  • 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.

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.
  • Informal caregivers provide 37.1 billion hours of care each year in the United States.
  • 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.
  • 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.
  • 67% of family caregivers report conflicts between caregiving and employment, resulting in reduced work hours or unpaid leave.
  • 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.
  • Family caregivers spend an average of $5,531 a year on caregiving expenses, including household goods, food, transportation, medical co-payments, prescription drugs, and medical equipment and supplies.

Why is a Federal Investment in Caregiver Support Vital?

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. Consider:

  • In 2007, the estimated economic value of caregivers's unpaid contributions was approximately $375 billion—that's how much it would cost if that care had to be replaced with paid services.
  • Lost productivity due to informal caregiving costs businesses $17.1 billion annually.

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.

About Family Caregiver Alliance (FCA)

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 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.

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