Caregivers Need A Bailout Too

Ruzanna Harutyunyan's picture
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There are more than 50 million Americans today providing unpaid care for family members and loved ones: an aging or ailing parent, a friend with a chronic health condition, a spouse with Alzheimer's, a sibling with a traumatic war injury, a child with physical or mental challenges. Family caregivers represent a huge but invisible "silent workforce" over 150 times larger than Wall Street's workforce and over 176 times larger than the automobile industry workforce.

While the deteriorating economy has hit all Americans hard, it has hit these Americans even harder. Family caregivers are struggling to pay their own bills and, increasingly, those of their loved ones as well; expenses continue to rise and the hours of care they provide each day continue to go uncompensated. The average caregiver spends $5,534 per year out-of-pocket for caregiving expenses. Like Wall Street, the auto industry, and homeowners, family caregivers need help from Congress to make it through 2009.

Caring.com and the National Alliance for Caregiving, are calling on President Obama and the 111th Congress to target up to 1% of the upcoming economic stimulus package toward supporting family caregivers. They have jointly developed five priority initiatives to help family caregivers that are posted on the Caring.com website, and are asking caregivers to add their voices and vote on which initiatives would help the most. Caring.com and the National Alliance for Caregiving will present the list, votes, and recommendations to President-Elect Obama's transition team for Long-Term Care and key members of the 111th Congress.

"These five initiatives could provide essential relief to family caregivers," said Gail Gibson Hunt, President & CEO of the National Alliance for Caregiving. "President-Elect Obama cared for his mother and grandmother and knows how difficult it is to provide caregiving on top of other family responsibilities."

The five recommended priorities to support family caregivers are:

1. Provide Adequate Funding for the National Family Caregiver Support Program. The National Family Caregiver Support Program (NFCSP) is the only federal program that recognizes family caregivers; it helps individuals who serve as unpaid caregivers for persons sixty or older. The program provides respite services, counseling, support groups and other community services to relieve the emotional, physical, and financial hardships of providing care. For many of the nation's family caregivers of aging parents, the NFCSP is the only program to sustain and support them in their caregiving role. It's also an incredible value. If services provided by informal caregivers had to be replaced with paid services, the price tag would be in excess of $375 billion. Yet the NFCSP has experienced level or only modest increases in funding since its inception in 2001, with current funding at $158M. Funding for the NFCSP should be doubled, from $158M to $320M, to address the current under-funding of this vital program.

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2. Expand Medicare and Medicaid Benefits to Better Support Family Caregivers. Medicaid and Medicare must do more help to ease the burden on family caregivers. Family caregivers are the backbone of the US long-term care system. Four out of every five adults receiving long- term care at home rely exclusively on family and friends to provide assistance. With the annual cost of nursing home care averaging over $75,000 per person, the ability to keep our aging loved ones at home longer adds up to huge savings for the government, private insurance, and families. Medicaid and Medicare are vital to supporting the needs of family caregivers, and we recommend two essential first steps.

o Under Medicaid, family caregivers should receive a comprehensive Caregiver Assessment to help identify and support their own needs in providing care to a friend or loved one.

o Under Medicare, healthcare professionals, including doctors, will promote educational resources for caregivers and referrals to local caregiver support organizations.

3. Encourage States to Adopt Paid Family Medical Leave Programs. The concept of paid family leave is here to stay, with several states and growing bipartisan support helping the U.S. to catch up with many other industrialized nations that have long offered such programs. The issue also became a topic in the presidential election, with President-Elect Obama proposing a "50-state strategy to adopt paid-leave systems," stating, "You shouldn't be punished for getting sick or dealing with a family crisis." In California, the nation's first state to adopt a paid family medical leave program in 2004, employees are entitled to up to six weeks of partial pay each year while taking time off from work to care for a seriously ill parent, child, and spouse or registered domestic partner. Most workers receive approximately 55% of their pre- taxed weekly wage, up to a maximum of $917, while on leave. Using successful state models already underway in California, Washington, and New Jersey as prototypes, Congress should provide incentives for additional states to develop paid family leave policies.

4. Fund the Lifespan Respite Act. In 2006, the Lifespan Respite Care Act was signed into law to make respite more accessible and affordable to family caregivers, regardless of age or disability. To date, Congress has provided no funding. This is unacceptable. The economic value that accrues from respite is exceptional. Respite has been shown to help avoid or delay more costly nursing home or foster care placements. Delaying nursing home or institutional placement of just one individual with a chronic condition for several months can save Medicaid, private insurance, or the family thousands of dollars. Congress should fully fund Lifespan Respite (PL 109-442) at $53.3 million for FY 09, $71.1 million for FY 2010 and $94.8 for FY 2011 to help the nation's 50 million family caregivers regardless of age or disability.

5. Tax Relief for Family Caregivers and Employers. A number of bills with bipartisan support have been introduced in Congress in recent years to provide caregiver tax incentives to help offset the thousands of dollars in lost wages and other expenses that family and informal caregivers at all income levels incur. Among the approaches currently under consideration: an annual refundable tax credit for persons with long-term care needs or their family caregivers, credits for specified caregiving expenses (such as home care services, respite, food, and transportation), a tax deduction to help consumers pay long-term care insurance premiums for policies that meet consumer protections, and inclusion of long-term care coverage in employer cafeteria plans. There's no shortage of good ideas for providing tax report for family caregivers. There has been a shortage of results. We encourage the 111th Congress to act.

"Funding these five initiatives would cost less than 1% of the proposed stimulus package, yet would provide material relief to millions of families struggling with caregiving today," said Andy Cohen, co-founder and CEO of Caring.com.

Family caregivers are asked to visit Caring.com to add their voices to these recommendations, vote on which initiatives would be most helpful to them, and share their experiences with other individuals caring for family members and loved ones. The results of the vote will be presented to the Obama Transition Team for Long-Term Care.

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