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Determining assisted living’s value is part of a “significant and unavoidable issue” that thrust the sector under a hot national spotlight recently, thanks to a KFF Health News / New York Times series examining the struggles of the middle class to access and pay for long-term care.

The “Dying Broke” series, published in November, was the focus of a panel discussion Tuesday that included a policy expert and reporters and families involved in the series. Collectively, the panelists provided potential policy solutions to address the long-term care industry challenges highlighted in the series.

Meanwhile, letters from senior living leaders to the New York Times made it clear that they think assisted living is part of the answer, not the cause of a problem.

Part one of the series examined America’s high long-term care costs, including how they compare with those of other countries. Part two looked at the high costs and profits of assisted living communities. Part three pondered the shortcomings of long-term care insurance.

In a letter to the editor submitted Nov. 21 by Argentum to the New York Times, Argentum President and CEO James Balda applauded the outlet for recognizing that assisted living is more cost-effective than nursing homes and in-home care. But he said the series failed to recognize that “senior residents and their families overwhelmingly love assisted living.”

“Our communities promote independence and dignity through care and socialization — encouraging pets, physical and mental activity, social excursions and purpose, all within the secure environment of their home,” Balda wrote, pointing to a recent J.D. Power 2023 Senior Living Satisfaction Study resident and family satisfaction survey. “More seniors should have access to the quality care our communities provide.”

Balda called on state and federal policymakers to create more options for older adults, such as expanding Medicaid, modernizing tax savings programs to include long-term care, and increasing the availability of long-term care insurance.

The American Seniors Housing Association similarly submitted a letter to the editor on Nov. 21, acknowledging that although many Americans have sufficient savings and home equity to pay for long-term care at home or in assisted living, many underestimate the consequences of longer life spans. 

“Our society does not have an adequate answer in place to help those whose savings are insufficient or who do not qualify for Medicaid assisted living, which is limited and not an option in all states,” ASHA President and CEO David Schless wrote, adding that Congress, agencies and states need to work together to find solutions. “Policymakers need to think broadly for ways to incentivize retirement savings, reactivate the market for long-term care insurance, expand Medicare benefits and much more.”

Addressing challenges through collaboration

Rani Snyder, vice president of program for the John A. Hartford Foundation, introduced the panel and said the scale of change needed to address the industry’s shortfalls is going to be “hugely challenging” and includes long-term care insurance, assisted living regulations and transparency. 

Reed Abelson, the New York Times healthcare reporter who worked on the series along with KFF Health News correspondent Jordan Rau, said that through her reporting, she found that the struggle to figure out long-term care is a “universal experience.”

“I’m amazed at how people were able to find solutions. They really worked hard, and they were creative and really self-sacrificing,” Abelson said. “People were incredibly committed to trying to make life better for someone.”

Anne Tumlinson, founder and CEO of ATI Advisory and founder of the online family caregiver support community Daughterhood, said that the data show that the vast majority of older adults with high levels of need are living in the community, not in assisted living or in nursing homes, due to the high costs of care and the lack of a financing system in this country to pay for it. 

‘Very dire situation’

Of those living in the greater community, only one-third are receiving financial support from Medicaid to pay for home- and community-based services, she said. Of the remaining two-thirds, half live under 200% of the poverty level and are paying out of pocket or relying exclusively on family caregivers, Tumlinson added.

“A lot of older adults living in the community today without any kind of Medicaid assistance, who cannot afford home care or assisted living and do not have long-term care insurance policies,” she said. “”Those people are 100% relying on family caregivers, if they even have them. If they don’t, it’s a very dire situation.”

Tumlinson called the long-term care system underfunded and one in which every single family is developing its own solutions one family, one household at a time. But she said that the issue is not something the private market can solve alone, and she called on the federal government to come up with a solution by pooling risk through taxes or premiums.

“It’s politically difficult, but as a matter of policy, it’s pretty simple,” Tumlinson said. “We know what to do; we just haven’t had the political will.”

That lack of political interest, she said, is compounded by people looking at the situation as an individual problem, when it really is a “collective problem that requires a collective solution.” 

“When we are in community together, that creates the opportunity for us to elevate our voices as a community,” Tumlinson said. “We have to elevate that fire, and we can do it as a community. And these lived experiences are critically important for policymakers to hear because it informs everything.”

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