Joining the Voices of Family Caregivers and Care Workers in a Shared Agenda

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By Elizabeth Blair & Anne Montgomery

In September, the National Academy of Sciences, Engineering, and Medicine (NASEM) released a much-anticipated report, Families Caring for an Aging America. The NASEM report very successfully provides a comprehensive review of the evidence on caregiving for older adults and calls for action by the government. Now, we need to organize to effectively demand change.

Improved services for elders and disabled persons requires multiple changes in policies and public priorities. Where will the energy to achieve this come from? A large part of the answer has to be caregivers – those who are supporting one or more loved ones now, those who have done so, and those who will. As the report expertly illustrates, caregiving is an integral part of American life – and is something that most of us will experience, many for significant periods of time.

The NASEM report makes it clear that we are a caring America. To truly address the needs of a long-lived society where the experience of caring for — or receiving care, or both — will be nearly universal, we must broaden the scope of action to include both paid and family caregivers. These groups are often addressed separately; but, in reality, care workers and family caregivers often work side-by-side to support older adults and other loved ones who are ill or have disabilities that require assistance from another person. In states that allow Medicaid waiver beneficiaries to choose their personal care aides, family members and paid caregivers are one and the same. Also, paid caregivers have families of their own, and often face financial struggles due to low wages and scarce employment benefits. Worst of all, family caregivers and care workers are often unable to accumulate adequate savings for their own retirement and old age.

What we need is a movement that builds on the recognition that caregivers are (or can become) a political group with shared experiences and a joined policy agenda. Together, caregivers represent a constituency that could rival any other in size and power.

  • Family caregivers and care workers are already beginning to organize, and to realize they can have power in the political arena.
  • Volunteers with the Family Caregiver Platform Project were successful in getting state platforms to adopt resolutions and planks supporting policy positions on caregiving in 11 states, and the Democratic national party platform explicitly supports family caregivers, while the GOP national party platform calls out the importance of home care.
  • Paid caregivers have been organized for some time, and have made significant inroads in securing higher wages and better benefits, particularly in New York and Minnesota.
  • The Caregiver Advise, Record, Enable (CARE) Act that requires at least a minimal recognition of caregivers by hospitals has been adopted in more than 30 states.
  • The Veterans Health System now requires that the care team assess the strain on any caregiver for a patient with self-care disabilities.

But much remains to be done. Given how heavily reliant our society is on caregivers to support older adults in the absence of a well-designed long-term care financing and service delivery system, caregivers need to find the voice to demand investment in the kinds of programs and tools that make caregiving easier.

Investment in recruiting and training the in-home workforce should be a priority in the coming years. Retention and turnover are major concerns, and these problems are likely to get worse as the number of older adults over the age of 85 triples between 2015 and 2050.

We should also figure out how to create volunteer Caregiver Corps in communities across the country. Locally chartered Corps, or a national program that recruits and deploys trained volunteers, could be immensely helpful in bolstering the efforts of family caregivers and care workers by providing practical assistance and companionship to decrease social isolation and help older adults thrive in the community.

We must also pursue policies that ensure financial stability for caregivers. This includes policies such as paid family leave, tax credits, and Social Security credits for years spent caregiving. It also includes higher wages for paid caregivers. Paid caregivers need and deserve a living wage, and should not have to struggle to make ends meet. Furthermore, as Stephen Campbell of the Paraprofessional Healthcare Institute (PHI) pointed out in a recent Aging Today article, “guaranteed economic hardship is not an effective recruitment tool.”

But first and foremost, let’s connect the voices of care workers and family caregivers. Working together, we can put forward a robust, inclusive agenda for the next Administration, for leaders at the state and local level, and most important of all, for the tens of millions of caring families of America. As Terry Fulmer of the John A. Hartford Foundation, one of the funders of the report, urges in her blog post, “Now, it’s up to us—all of us—to do the hard work necessary to make the committee’s vision of a transformed health care system centered on the needs of people and their families a reality.”

Watch for announcement of a Forum in Washington on November 14 to build on these ideas!

1 comments on “Joining the Voices of Family Caregivers and Care Workers in a Shared Agenda”

  1. A very important overview of this under-appreciated cornerstone of our healthcare system, family caregivers. Thanks for your work on this, and for including concerns about exposure to the risk of musculoskeletal injury as we assist our loved ones to sit, stand, or transfer (p, 3-23). Now to encourage health systems to work with assistive device companies to promote functional independence by improving the design of patient mobility/self-care devices: we can no longer assume that a family member can be available 24/7. Innovation is not just about software applications, it is also about smarter equipment design.


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