Medicaid ‘Unwinding’ Criticized as Biased Against Disabled People

Jacqueline Saa has a genetic condition that leaves her unable to stand and walk on her own or hold a job. Every weekday for four years, Saa, 43, has relied on a home health aide to help her prepare meals, bathe and dress, go to the doctor, pick up medications, and perform other daily responsibilities.

She received coverage through Florida’s Medicaid program until it all suddenly stopped at the end of March, she said.

“Each day the anxiety builds,” said Saa, who lost her home health aide for 11 days, beginning April 1, despite being eligible. The state has since restored Saa’s home health aide service, but during the gap she relied on her mother and her 23- and 15-year-old daughters, while struggling to regain her Medicaid benefits.

“It’s right so noteworthy to effort about,” she mentioned. “Right here is a successfully being care system that’s presupposed to support.”

Medicaid’s home and community-based services are designed to support people like Saa, who have disabilities and need help with daily activities, outside of a nursing facility. But people are losing benefits with little or no notice, getting poor advice when they call for information, and experiencing major disruptions in care while they wait for the state to resolve the issues, according to attorneys and advocates who are hearing from patients.

In Colorado, Texas and Washington, D.C., the National Health Law Program, a nonprofit that advocates for low-income and underserved people, has filed civil rights complaints with two federal agencies alleging discrimination against people with disabilities. The organization has not filed a lawsuit in Florida, though its attorneys say they’ve heard of many of the same concerns there.

Attorneys nationwide say the specific needs of disabled people were not prioritized as states began to review eligibility for Medicaid enrollees after an pandemic-era mandate for coverage expired in March 2023.

“As an alternative to monitoring and ensuring that people with disabilities could also develop their plan along the way, they kind of treated them like everyone else with Medicaid,” said Elizabeth Edwards, a senior legal expert for the National Health Law Program. Federal law places an “obligation on states to make sure people with disabilities aren’t left out.”

At least 21 million people nationwide have been disenrolled from Medicaid since states began eligibility redeterminations in spring 2023, according to a KFF analysis.

The unwinding, as it’s known, is a massive undertaking, Edwards said, and some states didn’t take additional steps to set up a separate phone line for people with disabilities, for example, so they could renew their coverage or contact a case manager.

As states prepare for the unwinding, the Centers for Medicare & Medicaid Services, the federal agency that regulates Medicaid, suggested that they must provide people with disabilities the support they need to benefit from the program, along with accessible communications for people who are deaf or blind.

The Florida Department of Children and Families, which verifies eligibility for the state’s Medicaid program, has an accessible team that processes applications for home health services and products, said Mallory McManus, the department’s communications director.

People with disabilities disenrolled from Medicaid services were “adequately notified and either did not respond in a timely manner or did not meet financial eligibility requirements,” McManus said, noting that individuals “would have been contacted by us up to 13 times by phone, mail, email, and text before processing their disenrollment.”

Allison Pellegrin of Ormond Beach, Florida, who lives with her sister Rhea Whitaker, who is blind and cognitively disabled, said that nothing of the sort happened for her family.

“They just cut off the benefits without a call, without a letter or anything else indicating that the benefits would be terminating,” Pellegrin said. Her sister’s home health aide, whom she had relied on daily for nearly eight years, stopped service for 12 days. “If I’m getting everything else in the mail,” she said, “it seems strange that after 13 years I wouldn’t have received one of them.”

Pellegrin, 58, a sales manager who gets health insurance through her employer, took time off from work to care for Whitaker, 56, who became disabled by a severe brain injury in 2006.

Medicaid reports were complicated, in part, because eligibility works differently for home health services than for basic coverage, according to federal guidelines that give states more flexibility to determine financial eligibility. Income limits for home health services are higher, for example, and assets are counted differently.

In Texas, a parent in a household of three will likely be limited to earning no more than $344 a month to qualify for Medicaid. And most adults with a disability can qualify without a dependent child and be eligible for Medicaid home health services with an income of up to $2,800 a month.

The converse was not taking that into consideration, said Terry Anstee, a supervising legal expert for community integration at Disability Rights Texas, a nonprofit advocacy organization.

Even a short lapse in Medicaid home health services can break relationships that took years to build.

“It will be very difficult for that person who lost that attendant to find another attendant,” Anstee said, due to staffing shortages for attendants and nurses and high demand.

Nearly all states have a waiting list for home health services. About 700,000 people were on waiting lists in 2023, most of them with intellectual and developmental disabilities, according to KFF data.

Daniel Tsai, a deputy administrator at CMS, mentioned the company is committed to ensuring that beneficiaries with disabilities receiving home health services and products “can renew their Medicaid coverage with as little red tape as possible.”

CMS finalized a rule this year for states to track Medicaid home health services. For example, CMS will now track how long it takes for people who need home health care to receive services and will require states to track how long people are on waitlists.

Staff turnover and vacancies at local Medicaid agencies have contributed to backlogs, according to complaints filed with two federal agencies concerned with civil rights.

The District of Columbia’s Medicaid agency requires that case managers help people with disabilities complete renewals. On the other hand, a complaint says, case managers are the most likely ones who can help enrollees complete eligibility reports and, as soon as they do, they don’t do their jobs.

Advocates for Medicaid enrollees have also complained to the Federal Trade Commission about tainted eligibility systems developed by Deloitte, a global consulting firm that contracts with about two dozen states to build, enforce, or operate automated benefits systems.

KFF Properly being Info stumbled on that a whole lot of audits of Colorado’s eligibility system, managed by Deloitte, uncovered errors in notices despatched to enrollees. A 2023 evaluate by the Colorado Place of business of the Affirm Auditor stumbled on that 90% of sampled notices contained considerations, about a of which violate the converse’s Medicaid principles. The audit blamed “flaws in system rep” for populating notices with unsuitable dates.

Deloitte declined to comment on specific state issues.

In March, Colorado officials paused disenrollment for folks on Medicaid who obtained home health services, which includes people with disabilities, after a “system update” led to wrongful terminations in February.

Another current issue is people being told to reapply, which at this time cuts off their benefits, instead of pausing the cancellation, which would ensure their coverage remains while the claim is investigated, said legal expert Miriam Harmatz, founder of the Florida Health Justice Project.

“What they’re being told to do is not right. The only 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 stated she “would be responsible for repaying any benefits” if she lost her appeal.

The argument should assume such individuals remain eligible and maintain their coverage, Harmatz said, because income and resources for most beneficiaries are not expected to increase significantly and their conditions are not expected to improve.

The Florida Department of Children and Families would not disclose 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 individuals apply for Medicaid, saw requests for assistance rise from 58 in March to 146 in April, said Lisa Mele, the organization’s director of its Aging and Disability Resources Center.

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

States are no longer monitoring the numbers, so “the impact is no longer clear,” Edwards said. “It’s a undoubtedly complex 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 had been fruitless, she said.

“After they eventually connected me to a customer service representative, she was actually just reading the same clarification letter that I’ve read,” Saa said. “I did everything in my power.”

Saa canceled her home successfully being aide. She lives on restricted Social Safety disability income and mentioned she would possibly perhaps perhaps well perhaps additionally no longer possess ample money to pay for the care.

On April 10, she obtained a letter from the state asserting her Medicaid had been reinstated, nonetheless she later learned that her plan did not cover home health care.

The next day, Saa mentioned, advocates put her in contact with a liaison at Florida’s Medicaid agency who restored her benefits. A home health aide showed up April 12. Saa mentioned she’s thankful nonetheless feels anxious about the prolonged wait.

“The hardest part of that period is knowing that this could happen at any time,” she mentioned, “and not thanks to anything I did wrong.”

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