The COVID-19 relief law is providing states with a generous funding boost for home- and community-based care as an alternative to institutionalizing disabled people, with the memory of the pandemic’s toll in nursing homes still fresh.
Advocates hope that the projected $12.7 billion will drive a gradual move toward helping elderly and disabled people, as well as their overburdened families, in daily situations. However, the money for state Medicaid programs, which has been in the works for a long time, will only be available for four quarters this year and next. This has raised fears that it would only have a temporary effect, sparking calls for permanent legislation.
“What we really want is to be able to reach out and get help for our loved ones without having to go through another battle,” said Maura Sullivan of Lexington, Massachusetts, who has two sons with autism. “We don’t want our children to be separated from us only because potholes need to be filled in the United States.”
Neil, Sullivan’s older son with more extreme autism who is in a rehabilitation facility, is an advocate for the disabled in her state. Tyler, her younger son, now 17, could hold down a job if he had help, she claims. Autism is a developmental disorder that causes difficulties in social interaction, communication, and actions. Although some people with autism need a great deal of assistance with everyday activities, others are mentally gifted.
Medicaid was established as a joint federal-state health-care program for the poor and disabled. It has also become the nation’s default long-term care program, despite the fact that qualifying is often a difficult process. It now covers about 1 in 5 Americans.
Although the federal government ensures that state Medicaid systems provide nursing home care for low-income individuals, the same cannot be said for home and community-based support services. All states provide these programs on a voluntary basis, but the variety varies greatly. Although there is debate over whether home and community care prevents or merely delays people from entering a nursing home, it usually costs less than half as much as institutional care.
The coronavirus pandemic brought the vulnerability of nursing home residents to the forefront. According to the COVID Monitoring Initiative, only about 1% of the US population lives in long-term care facilities, but they accounted for nearly one-third of COVID-19 deaths as of early March.
“Clearly, COVID showed that living in an institution increases the risk of infection and death,” said Martha Roherty, executive director of Advancing States, a group that represents state aging and disability agencies. “A care home is not the place to be if we want seniors and people with disabilities to have a better quality of life.”
According to a poll conducted by The Associated Press-NORC Center for Public Affairs Research last year, 60% of Americans would be extremely concerned if an elderly friend or family member needed long-term care in a nursing home during a pandemic, while another 27% would be moderately concerned.
According to MaryBeth Musumeci of the nonpartisan Kaiser Family Foundation, the billions in the COVID-19 legislation was the first new federal funding for home- and community-based programs since the Obama-era Affordable Care Act more than ten years ago.
“I expect this to be the first step toward a greater emphasis on Medicaid home and community-based programs, as well as finding out how to help states reach more people in the community,” said Musumeci, a Medicaid and disabled specialist.
Rep. Debbie Dingell, D-Mich., and other Democratic lawmakers recently introduced legislation in Congress that would make such programs a mandatory Medicaid benefit and establish basic standards and conditions.
“There are too many people who are forced to go into institutions when they get older,” Dingell said. “People should not be forced to enter a long-term care facility, where they are more likely to develop illness and are more isolated.”
Rep. Frank Pallone, D-N.J., the chairman of the House committee that governs Medicaid, says that improving long-term care, and expanding access to home and community-based care services, is one of his top priorities.
Any federal attempt to develop a new mandatory Medicaid benefit is likely to face stiff opposition from states. There’s also some skepticism about the money in the COVID-19 relief law, especially if accepting it means states will be left holding the bag once the temporary federal funding runs out.
In response to Dingell’s proposed legislation, Matt Salo, executive director of the National Association of Medicaid Directors, said, “This country requires and deserves a thoughtful, compassionate long-term care program, and the backbone of that must be access to these programs from anywhere but Medicaid.”
For the time being, states and disability advocates are waiting for clarification from the federal Centers for Medicare and Medicaid Services on how the COVID-19 law’s funds should be spent. That is expected to happen soon, according to the department. Reducing wait lists, increasing support worker compensation, and investing in technology to increase service quality are all examples of possible uses.
Sullivan, a Massachusetts mother with two autistic sons, said they spent most of the pandemic year at home. She works for The Arc, a non-profit that campaigns for people with intellectual and developmental disabilities, in her state.
Sullivan said that although her older son, Neil, has since returned to his residential facility, her younger son Tyler was harmed by being cut off from other people.
“He was at a stage in his development where social relations were becoming increasingly important,” she explained. “To be honest, we’ve seen regression this year, and we’re hoping to get him back to where he was before with more services and supports.”