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Signs of Momentum on Caregiving

Caregiver hugging mother in wheelchair
Jose Luis Pelaez Inc/Getty Images

It’s not every day that members of Congress spotlight the unmet needs of family caregivers. When they do, they deserve credit, which is why we wish to thank the ACT Caucus, a bipartisan group of Senate and House lawmakers that is doing just that.

Specifically, these leaders have announced plans to raise awareness in Congress, including of the need to find solutions for the physical, emotional, and financial challenges faced by family caregivers. The group is led by Sen. Michael Bennet (D-CO), Sen. Shelley Moore Capito (R-WV), Rep. Jen Kiggans (R-VA), and Rep. Debbie Dingell (D-MI).

Their commitment matters because family caregivers do not get the support they need, even though they are the backbone of our nation’s system of long-term care. We need to do more, and I’m pleased to point out some recent steps in the right direction.

This is a step forward in AARP's fight for solutions that could save family caregivers time and money.  And we're seeing real momentum:

  • After a period of dormancy, the bipartisan ACT Caucus (full name: the Assisting Caregivers Today Caucus) jumped back to life with public statements from its chairs, all designed to raise the visibility of caregiving concerns and encourage lawmakers to push harder for commonsense solutions.  
  • President Biden recently announced an Executive Order directing the federal government to take key steps to support family caregivers, including military families, and their role as the frontline of the health care system.
  • The Centers for Medicare & Medicaid Services has reminded hospitals to include family caregivers as partners in the discharge process. Too often, family caregivers are left out of the medical loop despite their growing responsibilities to provide care when a patient comes home.

More than 48 million Americans currently provide care that enables their loved ones to live independently in their homes, where they want to be, instead of being forced into nursing homes. All that effort adds up to $600 billion in unpaid labor each year, saving taxpayers billions. It is no exaggeration to say that without their devoted efforts, America’s health and long-term care systems would collapse.

For all they achieve, however, family caregivers often face significant financial costs, stress, and risks to their own health.

One of their challenges is the growing expectation that caregivers take on health care duties in the home for their loved ones. These may include but are not limited to operating specialized medical equipment, giving injections, caring for wounds, and managing multiple medications and special diets. Family caregivers tell us they often feel unprepared for these responsibilities, which is why we welcome the CMS guidance on hospital discharges.

Under this policy, caregivers should be given crucial information to help them manage health care tasks. In addition, hospitals should provide details with the patient’s consent about the patient’s condition, treatments, and their health care needs moving forward.

The federal provisions complement the state-level Caregiver Advise, Record, Enable (CARE) Act, which AARP has advocated for years, securing passage in 42 states, the District of Columbia, Puerto Rico, and the U.S. Virgin Islands. Among its provisions, the CARE Act requires that hospitals include a family caregiver’s name on their loved one’s medical record, inform the caregiver when the patient is going to be discharged, and provide education and instruction on medical tasks the caregiver would perform at home.

Separately, the White House has announced new measures to help family caregivers in military families. An executive order signed by President Biden is designed to encourage flexibility for remote work, which can be extremely helpful to caregivers. It also calls for a strategic plan to promote government-wide hiring and retention of these caregivers (as well as military and veteran spouses and survivors).

Taken together, the recent developments are a step forward in elevating and integrating family caregivers across federal agencies and the health care system. In particular, I want to give a shout-out to the bipartisan ACT Caucus in Congress. These are a group of leaders that truly get it. AARP looks forward to working with them – and all government officials – as we keep up the fight to push caregiving concerns higher on the agenda.

Caregiving is a tough job, and family caregivers deserve all the help they can get. Much more can be done to support their efforts to ensure their loved ones can get the care they need to live independently in their homes. But we are happy at signs of progress. As more people live longer lives, these efforts become more important than ever.

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