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The need to address the growing caregiving crisis with a coordinated national strategy

America’s caregivers are finally getting the recognition they deserve, but their support and wages warrant a boost as well. Nationwide, we have more unpaid family caregivers than the population of California; the value of family caregiver hours is more than six times Medicaid expenditures for home and community-based services; and on average, family caregivers spend 20 percent of their total income on caregiving expenses.

The contributions of these unsung heroes are invaluable, but we have started to quantify them. There are about 40 million family caregivers in the United States. They provide 37 billion hours of unpaid care to adult relatives and friends who need it. The economic value of their unpaid contributions has risen to $470 billion, according to the most recent AARP report about the rising economic contributions of caregivers.  At the same time, nationwide Medicaid expenditures for home and community-based services were much lower – $75 billion.

{mosads}For the sake of caregivers, those they provide care to and indeed all of us, we need a coordinated national strategy to recognize their vital contributions. Otherwise, as the population ages, caregiving will be an economic drag and costs could easily shift to the government and put more pressure on Medicaid.

Economic costs to caregivers are striking. Sixty percent of them attempt to work part-time or full-time jobs, but research suggests that family caregiving may reduce the likelihood of their working.  In addition, family caregivers spend an average of $6,954 on out-of-pocket costs related to caregiving and nearly 20 percent of their annual income. That number skyrockets for caregivers of persons with dementia.

Dave, 66, from Tampa, Fla., retired from his day job several years ago to pursue his small business, as well as spend more time with his wife, Judy.  It was not long before she was diagnosed with dementia, which is now moderately severe. He is grateful for local respite services, but waiting lists are long and medical and out-of-pocket costs have increased as her dementia has worsened. In addition, costs to care for himself increase parallel to the mental, emotional and physical demands that continue to grow. He will care for Judy at home as long as he can, but he fears the need for medical bankruptcy – despite help from Medicaid.

For Dave and so many others, “out-of-pocket costs” are simply emptying their pockets and crushing financial security. A national strategy should promote modern policies to help caregivers stay in the workforce or minimize the financial strain caregivers experience when they must leave the workforce. 

Karen and her son, Mike, also in Tampa, are outspoken local and national advocates of Medicaid home-based care. Medicaid not only gave Mike a lifeline, but a life into adulthood after Karen was told he would not see his first birthday because of his spinal muscular atrophy. Mike is now in his 30s and thrives. Many know Karen as Mike’s mom, but she is also his full-time caregiver who did not have consistent healthcare coverage herself until the Affordable Care Act.  Expanding healthcare for millions of our neighbors – including caregivers, such as Karen – was an essential first step because many caregivers are unable to maintain full-time employment with health insurance benefits. Plus, patients will lose their caregivers if the caregivers are unable to care for themselves. Much more needs to be done through a nationwide blueprint for caregivers. 

That is why I intend to refile the bipartisan RAISE Family Caregivers Act with my Republican colleague Gregg Harper of Mississippi to help bring about a much-needed overarching strategy with recommendations by experts for training, workplace policies, helpful tax credits and more to better support caregivers and the family members they care for. We must continue to recognize the role and contributions of family caregivers by giving them the tools they need to ensure they are able to keep bringing home a good paycheck, can take leave when they need to, and ensure that their loved one receives the care he or she needs. Without our caregivers who help their loved ones remain at home as long as possible and to receive the best possible care and quality of life, many more older adults and persons with disabilities would be forced to live in institutions, often at the public’s expense.

Last year, momentum was building for the RAISE Family Caregivers Act per a White House Conference on Aging initiative and support from caregiving advocates, such as AARP.  Unfortunately, progress has stalled in this Congress as gridlock has taken hold and without any compromise on improving the Affordable Care Act. 

Instead, the GOP proposed repeal of the Affordable Care Act and severe cuts to health services provided by Medicaid. Families and caregivers will not be immune from coverage being ripped away, including caregivers such as Karen and her son Mike. In the meantime, the rest of the nation’s agenda is held hostage including how to support and boost the wages of caregivers in the modern era to benefit us all. 

Recognizing caregiving in America will address an already silent crisis that can grow as our nation ages, as the cost of caregiving takes a toll on families, workplaces and our economy, and Republicans press forward with attempts to slash Medicaid. According to AARP, 85 percent of care recipients are 50 years or older. Communities across the country have come together to provide some relief and respite for caregivers with neighborhood programs and support groups, but the human and economic cost to those who receive care, those who provide care and indeed all of us underscore the need to address this crisis at the national level.

Rep. Kathy Castor represents Florida’s 14th District, which includes Tampa and parts of Hillsborough County. She serves as Vice Ranking Member of the House Energy & Commerce Committee. 

The views expressed by this author are their own and are not the views of The Hill.


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