SPECIAL FROM Next Avenue
In the next four years, the country's 65 million family caregivers must speak out for the policies they need
After a long, hard campaign, Barack Obama has won a second term as president. On Tuesday night, many pundits told us this election season marked a turning point for the nation, with results reflecting a new recognition of the needs of a changing America. I hope part of that change includes a new respect for the value of family caregivers. The White House, Congress and all sectors of society should increase their support for these caregivers, who represent 80 percent of the nation’s long-term care workforce.
We have 65 million caregivers in this country -- 1 in 3 households. Approximately 66 percent of those caregivers are women who spend an average 20 hours a week caring for an older or ill loved one or for sons or daughters wounded in military service. An additional 24 million Americans are living in the Sandwich Generation, simultaneously caring for young children and an aging parent. And 7 out of 10 caregivers juggle these family responsibilities along with full- or part-time jobs.
- Speak up. Caregivers need to identify themselves. Collectively we need to develop the mentality that to get attention in Washington, we have to be seen as a deserving force. AARP and the Ad Council have kicked off a three-year public service announcement campaign to help caregivers self-identify. The Family Caregiver Alliance's updates on pending legislation can help you understand what officials are doing to support caregivers.
- Demand support on the job. With the economy in a still-too-slow recovery, caregivers need to hang onto, or find, a job. This is a challenge because caregivers already have a job — caring for a loved one. We need to speak up at work to get employers to provide support that helps both their caregiving workers and their bottom line, through improved health care costs and increased productivity. The Family and Work Institute reports that 77 percent of employers now offer flex time, up from 66 percent in 2005. Ask your employer if this or other benefits for caregivers are available for you.
- Come together as neighbors, friends and communities to help one another. There are numerous ways to help caregivers shoulder the burden. Lotsa Helping Hands, which powers online volunteer communities to support caregivers, has launched its Year of Helping Hands campaign to build momentum among volunteers and the caregivers who need their support.
The President's Caregiving Record So FarObama knows firsthand the needs of caregivers. He assisted his aging grandparents, who helped raise him, and his mother, whom he lost to ovarian and uterine cancer. Since the president took office in 2009, he has ushered in several legislative milestones related to caregiving:
- The National Plan to Address Alzheimer's Disease. In May, the president authorized100 million in the fiscal year 2013 budget to support the National Plan to Address Alzheimer’s Disease, which was signed into law in 2011. The plan's five goals include caregiver support and the development, by 2025, of effective prevention and treatment approaches for Alzheimer’s and related dementias.
- The Caregivers and Veterans Omnibus Health Services Act of 2010. The act calls for caregiver support programs to be administered by the Department of Veterans Affairs, including a toll-free national caregiver support line, local caregiver support coordinators in each VA medical center and better respite care benefits and stipends for veterans' caregivers.
- The White House Middle Class Task Force Report 2010. This report called for a102.5 million Caregiver Initiative to support programs that provide caregivers temporary respite care, counseling, training, referrals to critical services, transportation help, adult day care and in-home services, like aides to help seniors bathe and cook. Such help eases the burden for family members and helps seniors stay in their homes.
Despite the strong legislative support the president has shown for caregivers, he did not directly address their needs in his campaign stump speeches. But his staff did respond to my request for a statement:
America’s family caregivers provide extraordinary care and bring a unique perspective to the health care system. The number of home health workers and family caregivers has grown significantly over the last four years, and this administration is committed to supporting them. Last year, the Obama administration worked with national caregiver organizations and associations to celebrate the 10th anniversary of the National Family Caregiver Support Program, and the president’s FY2013 budget calls for continued funding of this vital program. The Affordable Care Act also took major steps forward to help people in need of long-term care stay in their homes and communities -- rather than in an institution -- through initiatives like expanding the Money Follows the Person program and establishing the Balancing Incentives program. These programs fund the home and community based services that family caregivers need to support their loved ones.
I encourage every caregiver to speak up now, and let policymakers hear your voice demanding the support and programs so critical to long-term care in this country. Perhaps we need to launch our own party to get attention, like the Australians who founded that country’s Carers Alliance Party.
On Tuesday, you voted in an election. Today, vote with your voice to ensure that caregivers win the support they need in the future.
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