Congress puts caregiving on the national agenda

Turns out there is something the nation’s sharply divided Congress can agree upon: the need to support family caregivers.

Bipartisan legislation is on its way to President Donald Trump’s desk that will establish a national strategy to bolster the work of informal caregivers, who provide more than $470 billion in unpaid care for America’s older adults each year, often with little support from the workplace or health care system.

The RAISE Family Caregivers Act is seen by advocates as a small but notable first step to focus the nation’s policies and resources on the growing burdens on family members, whose work will become increasingly vital as society ages in the decades ahead.

The legislation passed both houses of Congress earlier this week and went to the White House on Tuesday. It drew bipartisan support from Minnesota’s congressional delegation. Democratic Sen. Amy Klobuchar was among the early backers. In the House, Republican Rep. Tom Emmer signed on to the bill along with Democrats Betty McCollum, Rick Nolan, Collin Peterson and Keith Ellison.

“This feels really gratifying because this issue is so deeply personal to me,” said U.S. Sen. Tammy Baldwin, D-Wis., one of four authors from both parties who spent nearly three years crafting the bill and garnering support.

Research shows that many informal caregivers, most commonly spouses and adult daughters, are in poorer physical and emotional health than non-caregivers. Many risk their future financial security if they reduce hours or drop out of the labor force to care for loved ones with complex medical issues or memory loss. Failure to support their work now could lead to higher costs to government programs down the road, advocates argue.

Baldwin was raised by her maternal grandparents, and in her 30s became her grandmother’s caregiver at a time when her political star was rising. She often talks of how isolated and overwhelmed she felt trying to navigate the complex world of long-term services to get care for her grandmother.

“It’s important at the national level for us to be able to communicate about the critical role caregivers play,” she said. “We need to talk about their aggregate impact on the health care system, on allowing those with disabilities or an aging population to remain living independently as long as possible, and to look at making resources available to people no matter where they are across the country.”

The RAISE Caregiver Act stands for recognize, assist, include, support and engage. It was endorsed by more than 60 aging and disability organizations including the powerful AARP and Alzheimer’s Association.

If Trump signs the measure as expected, the Department of Health and Human Services (HHS) will present an initial strategy to Congress in the next 18 months.

The effort would bring informal caregivers and older adults to the table along with employers, health care providers, senior housing representatives, community leaders, nonprofits and all levels of government to address a wide scope of social, cultural and policy solutions.

It would address ways to adjust medical and long-term care services to recognize the central role of caregivers; provide more training and opportunities for respite; and improve end-of-life care. The bill also directs HHS to evaluate how caregivers impact Medicare, Medicaid and other federal programs.

A similar bill Baldwin co-sponsored two years ago also passed the Senate but never came to a vote in the House.

The difference this time came in more intense lobbying from advocates as well as the addition of a three-year sunset provision on the initiative. It also requires no additional funding, a key point to Republicans who feared that recommendations would involve expenditures and processes down the road, Baldwin said.

Richard Schulz, who oversaw the nation’s first comprehensive research report on family caregiving through the National Academies of Sciences, Engineering and Medicine in 2016, met the passage of the bill with tempered optimism.

“It’s an important first step,” he said. “The hope is that this will ultimately lead to important new programs and supports for caregivers.”

The measure adopts many of the committees recommendations, which identified the disconnect between the work of caregivers and the uncompensated value they bring to the economy and to the health of their loved ones.

Schulz, a University of Pittsburgh psychiatry professor, said supporting family caregivers should be an integral part of the nation’s collective responsibility in caring for its elderly.

“I’m hoping that the committee will have the relevant expertise that will be critical to identify the magnitude of the problems that need to be addressed, and then come up with strategies for addressing them,” he said.

In Minnesota, where one in six adults is caring for an older friend or relative, the issue will only become more pressing. By 2030, the first of the baby boom generation will turn 85, an age when people are twice as likely to have memory loss or physical limitations that require round-the-clock care than those in their 60s.

Meanwhile, shrinking family sizes mean there will be fewer family caregivers available to care for an aging population.

“We can no longer ignore the impact family caregivers have on overall health and long-term care system,” said Will Phillips, state director of AARP Minnesota. “We’ve got to come up with solutions that aren’t just public solutions but private-sector solutions. With baby boomers beginning to turn 80 years old in 2026, the impetus to do something is really upon us.”

Dawn Simonson, executive director of the Metropolitan Area Agency on Aging, welcomes a national approach.

“Caregiving is a crosscutting issue,” she said. “It affects someone’s work life, their financial security and their family life. Having a national strategy is a way to raise awareness of caregiving in that manner and better utilize the interests and energy around family it.”

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