Disabled people in Florida still struggling to get Medicaid restored after ‘unwinding’

JACKSONVILLE, Fla. — Lauren Eakin is legally blind and confined to a wheelchair with cerebral palsy. For years, Eakin, 34, lived in her own apartment with the help of caregivers who assist her with nearly everything. This summer, she lost much of her relative independence when the state of Florida revoked her essential Medicaid coverage.

“I need help for the rest of my life,” she said. “Getting up, to eating, to preparing meals, to going out in the community, I need help I would say almost 24/7,” she said.

Eakin’s care team, paid for through Medicaid, also helps her live a relatively normal life, including trips for her advocacy work in the community and to play on a local baseball team.

Eakin’s Medicaid coverage lapsed in June, a loss she discovered only when payment to her caregivers stopped. As a result, they substantially reduced their hours. That meant Eakin was alone overnight for over a month, unable to get out of bed to use the bathroom or leave the apartment in case of emergency.

“It was pure panic. Because I’m like, ‘What the heck happened?’” Eakin said.

During the pandemic, states were required to keep providing health care coverage to Medicaid recipients, even if they had lost their eligibility. When the Covid public health emergency ended, eligibility rules for the program were reinstated last year.

The nationwide re-evaluation of eligibility for enrollees in Medicaid — the government-backed health insurance program for people with low incomes or disabilities — went terribly wrong in states like Florida.

More than 25 million people in the U.S. have lost coverage during what’s been called the “unwinding” of Medicaid, according to the health policy nonprofit KFF. Roughly 70% of those who were dropped lost their coverage because of procedural reasons such as paperwork issues, although some may no longer qualify for other reasons, such as an increase in income.

Dropped with little notice

Melissa Mazaeda, vice president of care coordinator J&M Support Coordination in Florida, says procedural mishaps have been particularly problematic for people with developmental disabilities, who often require extra assistance to complete the renewal process. Advocates for the disabled say far too many were lumped into the wrong Medicaid categories, were dropped with little notice and didn’t receive timely help when they were disenrolled.

Mazaeda said states should never have kicked the developmentally disabled off Medicaid in the first place.

“They are never going to not need Medicaid. You don’t get over Down syndrome. There is no cure for cerebral palsy. You don’t get better from spina bifida or autism,’” Mazaeda said. “They’re going to require lifelong services. And the basis of that is Medicaid.”

The National Health Law program — a nonprofit that advocates for the health rights of low-income and underserved individuals — has filed civil rights complaints in Colorado, Texas and Washington, D.C., alleging discrimination against people with disabilities.

In Florida, a class action lawsuit accuses the state’s unwinding process of being not just sloppy, but illegal. Plaintiffs allege the state violated the constitutional rights of tens of thousands of Floridians, ending coverage “without adequate notice” and with “little or no explanation of the actual reason.”

Of the 1.9 million people in Florida who lost Medicaid coverage, according to KFF, patient advocates estimate that thousands of disabled people like Eakin have been affected.

In her case, the state sent several digital notices asking for additional information, but she wasn’t able to read them because she’s legally blind. The notices were not sent to her care coordinators, who could have helped her with the paperwork before it was too late, according to her care team.

“Their process is really bad for individuals who have vision impairments and who are disabled,” Eakin said. “Especially if you don’t have computer skills, and that’s the only way that you’re being notified.”

In Dunedin, Florida, Paul — who is 57 and has an intellectual disability, a pacemaker and a seizure disorder — says his Medicaid coverage was dropped in March. Paul asked that his last name be withheld for fear of retribution from state officials.

The only communication he received from the state: a Medicaid renewal notice last November that stated he was approved for a year, according to Paul and his care team.

All payments for his care in a group home and staff for day activities were cut off until his coverage was reinstated at the end of August. No explanation was provided by the state during the lapse, Paul said.

At one point, the stress became so severe Paul was taken to the emergency room for a panic attack.

“That was the worst thing I ever had,” Paul said. “I worried I would lose everybody, everything.”

NBC News repeatedly requested comment from officials with the Department of Children and Families, which verifies Medicaid eligibility in Florida, and from Gov. Ron DeSantis’s office.

At an Aug. 21 news conference, DeSantis was asked by NBC News why so many Floridians who should still be on Medicaid were losing coverage during the unwinding.

“I’m not sure that’s true,” DeSantis said.

The secretary of the state Department of Children and Families, Shevaun Harris, then stepped in, saying, “That’s not factual.”

“We’re committed to ensuring that anyone who is eligible maintains coverage,” she added.

But the disenrollments, Mazaeda said, have been “unprecedented” — and ongoing.

There’s no organization tracking how many people with disabilities have been dropped from Medicaid nationwide, although patient advocates estimate that in Florida thousands of disabled people have unfairly lost their coverage.

On Sept. 1, within her agency alone, 11 more of Mazaeda’s clients lost their Medicaid coverage. “There has never been this amount of people with developmental disabilities on this program being disenrolled from Medicaid in the over 30 years that I have been doing this.”

These are people who “already have so many challenges in their lives, so many worries and obstacles they endure,” she said. “Dropping them from Medicaid has added another level of stress to their lives that could have been prevented, and should have been remedied by now.”

Meanwhile, Lauren Eakin’s Medicaid coverage was restored within the last week, but not before her home and community-based provider, Kimberly Bryant, was forced to take out roughly $14,000 in personal loans to pay for the limited hours of caregiving per day that Eakin received during the gap.

“My employees need their money,” Bryant said. “They can’t just sit here and wait for months without continuing to get paid. And that’s pretty much what they left us to do.”

It’s unclear whether the state will pay her back for the services provided during the coverage lapse.

Still, she says, “I couldn’t walk away. They would… what? Drop her off at the hospital? Where would you drop her? That’s my question. Would I just not show up, and she just sits here?”

Eakin says she’s lost faith in a system that’s supposed to help her live life to the fullest.

“If it can happen to me, it can happen to anybody,” she said.