You Can’t Put a Price on Family Caregivers

A few weeks ago, I discussed the shrinking pool of home health care workers, caused by decreasing numbers of births in coming generations, and how to advocate for better support for paid caregivers. An intriguing report crossed my desk this week, which prompts me to add to that information — the invaluable work done by family caregivers.

An Invisible Workforce

A recent update from AARP — part of its Valuing the Invaluable series — reports that some 48 million people in the United States help care for loved ones who need assistance with such day-to-day tasks as dressing, meals medication management, medical bill paying, and more. In 2021, the economic value of family caregivers’ unpaid work was approximately $600 billion — yes billion! That estimate is conservative, says AARP, and doesn’t include out-of-pocket expenses and lost wages; and it doesn’t account for the complexity of the care provided (when family caregivers perform medical or nursing tasks, for example). This staggering number actually exceeds the value of paid home health care.

The report also examined family caregivers in families of color. It found that Black caregivers often are more involved in “high-intensity care” — helping people with greater needs, performing complex medical and nursing cares, and devoting more hours each week to the person in need. Black, Latinx, Asian American, Native Hawaiian and Pacific Islander, and Indigenous persons all have distinct family caregiver experiences and specific support needs, as do their care recipients. Additionally, LGBTQA+ family caregivers make up about 9 percent of all caregivers in the U.S., and also face a distinct set of challenges when caring for their spouses, partners, friends, and older family members — including the travesty of often having to choose whether to “go back into the closet” in order to receive adequate health care.

Some Statistics

By 2034, adults 65 and older will — for the first time — outnumber children under 18, with the number of potential caregivers projected to also fall as the number of adults needing long-term care continues to increase. And unlike previous generations, these Gen Z and Millennial caregivers are much more likely to be juggling a myriad of responsibilities, including holding down full-time jobs and taking care of younger family members.

All of these factors severely impacts family caregivers’ own physical and emotional health.

What To Do?  Federal and State Responses

Many federal initiatives have been introduced in recent years, including The National Strategy to Support Family Caregivers, which offers a unified approach to recognizing and supporting family caregivers. The initiative includes hundreds of actions at all levels of government and in the private sector to accomplish that goal. There also have been Centers for Medicare and Medicaid Services waiver expansions, supplemental plan improvements under Medicare Advantage plans, and expanded supports for caregivers of veterans and spouses.

On the state level, many states are looking at ways to offset the financial cost of caring for a family member, e.g. possible caregiver tax credits or other reimbursement programs. Additionally, 45 states and U.S. territories now have CARE Act laws, which support family caregivers as relatives are hospitalized or transition home; and a small number of states now require paid sick leave and/or paid family leave.

But More is Needed

It’s all about advocacy. We must use our voices to let lawmakers on all levels of government know that greater support and resources are needed. AARP’s report suggests three:

  1. The National Strategy needs additional steps to build on the actions goals and outcome plus ensure that all publicly-funded programs and caregiver support services account for the diverse needs of diverse family caregivers.
  • Policymakers should provide financial assistance and relief to family caregivers through federal and/or state tax credits. Also they should examine reforms to protect and — if possible — improve Social Security benefits for people who provide caregiving to older adults, children and others.  Additionally Home and Community Based Care programs (HCBC) need to be participant directed that allow family caregivers to be paid directly.
  • The federal and state Family and Medical Leave Acts (FMLAs) must be strengthened, including expanding protections to apply to all workplaces and all primary caregivers, including those caring for longtime friends. Family and medical leave needs must be paid time off so that caregiver can afford to take the time off from their jobs. Paid sick time also needs to be a requirement in all workplaces, so workers can use that for short-term personal or family illness, medical appoints, and the like. Finally workplaces must institute flexibility policies, and protection from discrimination based on caregiving responsibilities.

Contact your Congressional, state and local representatives. Find out what they are doing to ensure the health and well-being of family caregivers. Advocate for your loved ones and for yourself so that your journey into your Third Chapter will be one of discovery and joy.

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