Medicaid 'unwinding' decried as biased against disabled people

Another common problem is people being told to reapply, which immediately cuts off their benefits, instead of appealing the cancellation, which would ensure their coverage while the claim is investigated, said attorney Miriam Harmatz, founder of the Florida Health Justice Project.

“What they’re being advised to do is not appropriate. The best way to protect their legal rights,” Harmatz said, “is to file an appeal.”

But some disabled people are worried about having to repay the cost of their care.

Saa, who lives in Davie, Florida, received a letter shortly before her benefits were cut that said she “may be responsible to repay any benefits” if she lost her appeal.

The state should presume such people are still eligible and preserve their coverage, Harmatz said, because income and assets for most beneficiaries are not going to increase significantly and their conditions are not likely to improve.

The Florida Department of Children and Families would not say how many people with disabilities had lost Medicaid home health services.

But in Miami-Dade, Florida’s most populous county, the Alliance for Aging, a nonprofit that helps older and disabled people apply for Medicaid, saw requests for help jump from 58 in March to 146 in April, said Lisa Mele, the organization’s director of its Aging and Disability Resources Center.

“So many people are calling us,” she said.

States are not tracking the numbers, so “the impact is not clear,” Edwards said. “It’s a really complicated struggle.”

Saa filed an appeal March 29 after learning from her social worker that her benefits would expire at the end of the month. She went to the agency but couldn’t stand in a line that was 100 people deep. Calls to the state’s Medicaid eligibility review agency were fruitless, she said.

“When they finally connected me to a customer service representative, she was literally just reading the same explanation letter that I’ve read,” Saa said. “I did everything in my power.”

Saa canceled her home health aide. She lives on limited Social Security disability income and said she could not afford to pay for the care.

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. A home health aide showed up April 12. Saa said she’s thankful but feels anxious about the future.

“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.”

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KFF Health News correspondents Samantha Liss and Rachana Pradhan contributed to this report.