Government Solutions Are Elusive
Over the years, lawmakers in Congress and government officials have sought to ease the financial burdens on individuals, but little has been achieved.
The CLASS Act, part of the Obamacare legislation of 2010, was supposed to give people the option of paying into a long-term insurance program. It was repealed two years later amid compelling evidence that it would never be economically viable.
Two years ago, another proposal, called the WISH Act, outlined a long-term care trust fund, but it never gained traction.
On the home care front, the scarcity of workers has led to a flurry of attempts to improve wages and working conditions for paid caregivers. A provision in the Build Back Better Act to provide more funding for home care under Medicaid was not included in the final Inflation Reduction Act, a less costly version of the original bill that Democrats sought to pass last year.
The labor shortages are largely attributed to low wages for difficult work. In the Medicaid program, demand has clearly outstripped supply, according to a recent analysis. While the number of home aides in the Medicaid program has increased to 1.4 million in 2019 from 840,000 in 2008, the number of aides per 100 people who qualify for home or community care has declined nearly 12%.
In April, President Joe Biden signed an executive order calling for changes to government programs that would improve conditions for workers and encourage initiatives that would relieve some of the burdens on families providing care.
Turning to Medicaid, a Shredded Safety Net
The only true safety net for many Americans is Medicaid, which represents, by far, the largest single source of funding for long-term care.
More than 4 in 5 middle-class people 65 or older who need long-term care for five years or more will eventually enroll, according to an analysis for the federal government by the Urban Institute. Almost half of upper-middle-class couples with lifetime earnings of more than $4.75 million will also end up on Medicaid.
But gaps in Medicaid coverage leave many people without care. Under federal law, the program is obliged to offer nursing home care in every state. In-home care, which is not guaranteed, is provided under state waivers, and the number of participants is limited. Many states have long waiting lists, and it can be extremely difficult to find aides willing to work at the low-paying Medicaid rate.
Qualifying for a slot in a nursing home paid by Medicaid can be formidable, with many families spending thousands of dollars on lawyers and consultants to navigate state rules. Homes may be sold or couples may contemplate divorce to become eligible.
And recipients and their spouses may still have to contribute significant sums. After Stan Markowitz, a former history professor in Baltimore with Parkinson’s disease, and his wife, Dottye Burt, 78, exhausted their savings on his two-year stay in an assisted living facility, he qualified for Medicaid and moved into a nursing home.
He was required to contribute $2,700 a month, which ate up 45% of the couple’s retirement income. Burt, who was a racial justice consultant for nonprofits, rented a modest apartment near the home, all she could afford on what was left of their income.
Markowitz died in September at age 86, easing the financial pressure on her. “I won’t be having to pay the nursing home,” she said.
Even finding a place willing to take someone can be a struggle. Harold Murray, Sheila Littleton’s grandfather, could no longer live safely in rural North Carolina because his worsening dementia led him to wander. She brought him to Houston in November 2020, then spent months trying to enroll him in the state’s Medicaid program so he could be in a locked unit at a nursing home.
She felt she was getting the runaround. Nursing home after nursing home told her there were no beds, or quibbled over when and how he would be eligible for a bed under Medicaid. In desperation, she left him at a psychiatric hospital so it would find him a spot.
“I had to refuse to take him back home,” she said. “They had no choice but to place him.”
He was finally approved for coverage in early 2022, at age 83.
A few months later, he died.
Reed Abelson is a health care reporter for The New York Times. The New York Times' Kirsten Noyes and graphics editor Albert Sun, KFF Health News data editor Holly K. Hacker, and JoNel Aleccia, formerly of KFF Health News, contributed to this report.
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