People lose Medicaid without notice
Disabled Americans scramble for answers
Jacqueline Saa has a genetic condition that leaves her unable to stand, walk on her own or hold a job. Every weekday for four years, Saa has relied on a home health aide to help her cook, bathe and dress, go to the doctor and accomplish other daily tasks.
She received coverage through Florida’s Medicaid program. Until it abruptly stopped at the end of March, she said.
“Every day the anxiety builds,” said Saa.
Medicaid’s home and communitybased services are designed to help people like Saa stay out of a nursing facility. But people are losing benefits with little or no notice, getting bad advice when they call for help and facing major disruptions in care while they wait for the issue to get sorted out, according to attorneys and advocates.
In Colorado, Texas and Washington, D.C., the National Health Law Program has filed civil rights complaints with two federal agencies alleging discrimination against people with disabilities.
Attorneys nationwide say the needs of disabled people were not prioritized as states began to review Medicaid eligibility after a pandemic-era coverage mandate expired in March 2023.
“Instead of monitoring and ensuring that people with disabilities could make their way through the process, they sort of treated them like everyone else,” said Elizabeth Edwards, a senior attorney for the National Health Law Program. But federal law puts an “obligation on states to make sure people with disabilities don’t get missed.”
A complex process
At least 21 million people nationwide have been disenrolled from Medicaid since states began eligibility reviews, according to a KFF analysis.
The unwinding, as it’s known, is an immense undertaking. Edwards said some states did not take extra steps to set up a telephone line for those with disabilities, for example, so people could renew their coverage or contact a case manager.
The Florida Department of Children and Families, which verifies eligibility for the state’s Medicaid program, has a specialized team that processes home health applications, said Mallory McManus, the department’s communications director.
People with disabilities disenrolled from Medicaid were “properly noticed and either did not respond timely or no longer met financial eligibility requirements,” McManus said. People “would have been contacted by us up to 13 times.”
Allison Pellegrin, who lives with her blind and cognitively disabled sister, Rhea Whitaker, said that never happened for her family.
“They just cut off the benefits without a call, without a letter or anything stating that the benefits would be terminating,” Pellegrin said. Her sister’s home health aide, whom she had used every day for nearly eight years, stopped service for 12 days.
Terry Anstee, an attorney at Disability Rights Texas, said even a brief lapse in services can fracture relationships that took years to build.
“It may be very difficult for that person who lost that attendant to find another attendant,” Anstee said, due to workforce shortages and high demand.
Backlogs, bad advice
States are not tracking the numbers of disenrolled people with disabilities, so “the impact is not clear,” said Edwards, of the National Health Law Program. “It’s a really complicated struggle.”
About 700,000 people were on waiting lists for home health services in 2023, most of them with intellectual and developmental disabilities, according to KFF data.
Daniel Tsai, a deputy administrator at the Centers for Medicare and Medicaid Services, said the agency is committed to ensuring that people with disabilities who receive home health services “can renew their Medicaid coverage with as little red tape as possible.”
CMS finalized rules this year for states to monitor Medicaid home health services, including how long people linger on waitlists.
Medicaid reviews have been complicated, in part, by the fact that eligibility works differently for home health services than it does for general coverage, based on federal regulations that give states more flexibility to determine financial eligibility.
Staff turnover and vacancies at local Medicaid agencies have contributed to backlogs, according to complaints filed with two federal agencies focused on civil rights.
Advocates for Medicaid enrollees have also complained to the Federal Trade Commission about faulty eligibility systems developed by the consulting firm Deloitte.
Another common problem is people being told to reapply, which immediately cuts off benefits, instead of appealing the cancellation, which would continue coverage while the claim is investigated, said attorney Miriam Harmatz, founder of the Florida Health Justice Project.
Still, some disabled people are worried about potentially having to pay that money back. Saa received a letter shortly before her benefits were cut that said she “may be responsible to repay any benefits” if she lost her appeal.
Saa filed that appeal March 29 after learning from her social worker that her benefits would expire at the end of the month. “When they finally connected me to a customer service representative, she was literally just reading the same explanation letter that I’ve read,” said. “I did everything in my power.” On April 10, she received a letter from the state saying her Medicaid had been reinstated, but she later learned that her plan did not cover home health care.
The following day, Saa said, advocates put her in touch with a point person at Florida’s Medicaid agency who restored her benefits.
Saa said she’s thankful but anxious. “The toughest part of that period is knowing that that can happen at any time,” she said, “and not because of anything I did wrong.”
Contributing: Samantha Liss and Rachana Pradhan, KFF Health News
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF – the independent source for health policy research, polling and journalism.