With the memory of the pandemic’s toll in nursing homes still raw, the COVID-19 relief law is offering states a generous funding boost for home- and community-based care as an alternative to institutionalizing disabled people. Advocates hope the estimated $12.7 billion will accelerate what has been a steady shift to supporting elderly and disabled people and their overwhelmed families in everyday settings. But the money for state Medicaid programs, long in coming, will only be available over four calendar quarters this year and next. That’s raising concerns it will have just fleeting impact, and prompting calls for permanent legislation. “What we really want is that when our loved ones need support, we are going to be able reach out and get that support without another battle,” said Maura Sullivan of Lexington, Massachusetts, who has two sons with autism. “We don’t want to have our kids cut out just because the potholes need to be fixed in the states.” Sullivan, an advocate in her state for the disabled, has an older son, Neil, with more severe autism who is in a residential facility. But she believes her younger son, Tyler, now 17, could one day hold down a job, if he had help. Autism is a developmental disability that leads to social, communication and behavioral challenges. There’s a spectrum of severity, and while some people with autism need a lot of help with daily basics, others are intellectually gifted. Medicaid was originally intended as a federal-state health program for the poor and severely disabled. As it has grown to cover about 1 in 5 Americans, it’s also become the nation’s default long-term care program, although qualifying is often an arduous process. While the federal government requires state Medicaid programs to cover nursing home care for low-income people, that’s not the case for home- and community-based support services. All states do offer such services voluntarily, but the scope varies widely. Home and community care usually costs less than half as much as institutional care, although there’s debate on whether it prevents or merely delays people from going into a nursing home. The coronavirus pandemic starkly exposed the vulnerability of nursing home residents. Only about 1% of the U.S. population lives in long-term care facilities, but they accounted for about one-third of COVID-19 deaths as of early March, according to the COVID Tracking Project. “Clearly COVID demonstrated that living in an institution puts you at higher risk for infection and deaths,” said Martha Roherty, executive director of Advancing States, which represents state agencies on aging and disability. “If we want seniors and people with disabilities to have a higher quality of live, that is not going to be in a nursing facility.” A poll by The Associated Press-NORC Center for Public Affairs Research last year found that 60% percent of Americans would be very concerned if an aging friend or family member needed long-term care in a nursing home during the pandemic, and another 27% would be moderately concerned. The billions in the COVID-19 law represent the first new federal money for home- and community-based services since the Obama-era Affordable Care Act more than 10 years ago, said MaryBeth Musumeci of the nonpartisan Kaiser Family Foundation. “I expect that that this is going to be first step toward additional focus on strengthening Medicaid […]

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