Marc Cohen and other academics and policy analysts saw the writing on the wall years ago. With roughly 10,000 Americans turning 65 every day, a decades-old medical and financial storm is now on the horizon when it comes to how to provide and pay for long-term services and supports (LTSS) for elders.
The number of family members available to care for aging relatives is dwindling, most families can’t afford the time or expense of caring for an older relative, and divisive, uncompromising politics in the United States – despite these long-approaching clouds – have done little to tackle the issue head on. More than half of us will need LTSS in old age, yet less than 10 percent of us have insurance to help cover the costs.
“Everyone in their gut knows that there’s this issue out there,” said Cohen, co-director of the LeadingAge LTSS Center at UMass Boston, and research director of the Center for Consumer Engagement in Health Innovation at Community Catalyst. “But very little has been done about it.”
Cohen and his peers spent years working on an idea first put forward by academics and researchers that were part of the Long-Term Care Financing Collaborative, and then expanded on this idea in a paper presented at the Bipartisan Policy Center. At times, their suggestions gained traction, but not among the people who mattered most – the politicians who could enact legislation.
On June 30th, New York Congressman Tom Suozzi, a Democrat representing sections of Long Island and Queens, introduced the Well-being Insurance for Seniors to be at Home (WISH) Act, which addresses how to finance long-term care for older adults, the first new solution put forth in almost a decade.
“With the number of disabled elders expected to double in the coming years, fewer family caregivers are available for these aging Americans, and the market for long-term care insurance is not currently sufficient to address these demographic challenges,” Suozzi said in a press release when the legislation was released. “The WISH Act would save the Medicaid program and millions of Americans from financial ruin, would allow people to age at home with dignity, and would create millions of good-paying, middle-class jobs in the home health care industry.”
Private and public interests had always stood in the way of past legislation aimed at this issue. The WISH Act attempts to overcome this divide by creating a public-private partnership based on social insurance for catastrophic LTSS expenses, coupled with family help, savings and private long-term care insurance for early up-front costs.
The idea is that such a comprehensive insurance solution – built on well-defined public and private roles — would enable older adults to stay at home if they wish instead of needing to deplete their and their family’s life savings and enter Medicaid-funded nursing homes or access more limited Medicaid-financed home care services.
In addition, the legislation is aimed at helping low-income individuals and their families whose savings are often devastated when a loved one requires long-term care, forcing many to make tough decisions about work and incomes versus their relative’s long-term care needs.
In mending this dangerous trend, the legislation would also promote health equity by providing a financial parachute to those families that would suffer most under the current system – a system which leaves the Medicaid program financially stretched and unable to meet the needs of its beneficiaries and pay rates necessary to support a high-performing workforce.
Cohen also views the legislation through a feminist lens. For decades, working women – who are the primary family caregivers of disabled elders — have been forced to weigh their careers and income versus staying at home to care for an elderly relative. If successful, the WISH Act would empower more working women to stay in the workforce, because the costs associated with bringing in home care aides, for example, would be paid for through the insurance program.
The legislation would create a new Long-Term Care Insurance Trust Fund that would be used to pay for the “catastrophic” period of long-term care for adults requiring many years of help. At the same time, the legislation would have private insurance companies offer affordable coverage plans for older adult’s initial years of disability. And it would be paid for with a social insurance contribution by all workers and their employers, each contributing about 0.3 percent of wages.
The legislation was largely inspired by the 2018 paper written by Cohen, Judith Feder of Georgetown University and Melissa Favreault of the Urban Institute. Their work was funded in part by the Office of the Assistant Secretary for Planning and Evaluation at the Department of Health and Human Services, among others.
The way that work came about mirrors the political headwinds the WISH Act legislation will face on a very divided Capitol Hill.
“We went back and forth for two years,” Cohen said. He came to the issue with a perspective shaped by his work with the private insurance sector, while Feder came from the public policy side, a big philosophical divide concerning what private industry and the government could and should do when it comes to such a challenging and difficult issue like long-term care financing.
“Very early on when we butted heads, we both agreed that we would not let “the enemy of the good be the best” and that ideological purity would have to be put aside so that we could focus on a practical solution that could do a lot of good,” Cohen said.
Their paper was published in January 2018, got some attention, but then languished until just before the pandemic hit in 2020. In late November 2019, Dr. Joanne Lynn, a geriatrician and hospice physician who is a senior analyst at Altarum and who was working at Congressman Thomas Suozzi’s office, invited Cohen to fly down to Washington, D.C., to meet with the Congressman and his team, where the initial sketches of the WISH Act were discussed. Throughout 2020 and the first six months of 2021, there were multiple meetings which were led by Dr. Lynn responding to concerns of stakeholders and dealing with the minute details that come with developing a new and major piece of legislation.
After a career spent touting the rationale for such legislation, this was the first time Cohen played a direct role in helping to shape legislation. “During that process it became clear to me that this is not a rich versus poor or Democrat versus Republican issue, but rather, a human issue that affects us all and really needs to be addressed,” Cohen said.