Why Are People Stuck in Medicaid Limbo?

Lauren Eakin is legally blind and has cerebral palsy. She uses a wheelchair. For years, Eakin, 34, lived in her own apartment while receiving help from a team of caregivers.

This summer, she lost much of her independence when the state of Florida terminated her Medicaid coverage. Eakin’s Medicaid coverage ended in June.  She only learned that her coverage ended when her caregivers were no longer being paid.

 As a result, they drastically cut their hours. That meant Eakin was alone overnight for more than a month, unable to get out of bed or use the bathroom. She also had no way to leave her apartment in an emergency.

“It was pure panic. Because I’m like, ‘What the heck happened?’” Eakin told NBC.  The nationwide re-evaluation of Medicaid eligibility was fraught with problems in some states, including Florida. According to KFF, nearly 25 million people in the United States have lost coverage as a result of what is known as the “unwinding” of Medicaid. Approximately 70% of those eliminated lost their coverage due to procedural reasons such as paperwork errors, though some may no longer qualify due to other factors such as an increase in income.

Melissa Mazaeda, vice president of care coordinator J&M Support Coordination in Florida, says procedural errors have proven especially difficult for people with developmental disabilities who frequently require additional assistance to complete the renewal process. Advocates  say that far too many people were placed into the wrong Medicaid categories, dismissed with little notice, and did not receive timely assistance after being disenrolled. Mazaeda argued that states should never have kicked disabled people off Medicaid in the first place. 

The National Health Law Program, a nonprofit organization that campaigns for the health rights of low-income and underserved persons, has filed civil rights cases in Colorado, Texas, and Washington, D.C., alleging discrimination against people with disabilities.

In Florida, a class action complaint alleges that the state’s unwinding procedure is not just poor, but illegal. Plaintiffs claim the state violated the constitutional rights of tens of thousands of Floridians by terminating coverage “without adequate notice” and providing “little or no explanation of the actual reason.” According to KFF, thousands of disabled people like Eakin are among the 1.9 million people in Florida who have lost Medicaid coverage. 

Eakin was sent notices that she was unable to read because of her visual impairment. Care coordinators didn’t receive notices either, leaving them unable to help her. “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.”

There is no organization that tracks how many disabled people have been unenrolled from Medicaid across the country. Patient advocates estimate that thousands of disabled Floridians have been wrongfully unenrolled from Medicaid.

On September 1, 11 more of Mazaeda’s clients lost Medicaid coverage.  Mazaeda has never experienced anything like this in the 30 years she’s been working in the field. “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.” 

Lauren Eakin’s Medicaid coverage has been reinstated. Her provider home and community-based services provider Kimberly Bryant, took out $14,000 in loans to pay Eakin’s caregivers. She is unsure if she will be reimbursed by the state. “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?” Bryant says.

For disabled people like Lauren Eakin, Medicaid is essential to their survival. Medicaid is the only insurance that covers home and community-based services. Unfortunately, even a temporary loss of coverage can be catastrophic for many disabled people.

Like Lauren, I also receive home and community-based services through Medicaid. My PCA (personal care assistant) hours cost over $50,000 annually. My PCA works for me full time. If I were to lose Medicaid coverage, he would no longer be paid.

Medicaid provides essential services to millions of people in this country, including therapies, medications, private duty nursing, personal care services and medical equipment. Losing Medicaid coverage could mean that people remain uninsured. For some people losing insurance is a matter of life or death.

Sources:

Galewitz, Phil, et al. “‘Worse than People Can Imagine’: Medicaid ‘unwinding’ Breeds Chaos in States.” KFF Health News, KFF, 3 Nov. 2023, kffhealthnews.org/news/article/medicaid-unwinding-disenrollment-redetermination-state-delays/. 

Goldstein , Amy. “Nearly 4 Million in U.S. Cut from Medicaid, Most for Paperwork Reasons.” The Washington Post, 28 July 2023, http://www.washingtonpost.com/health/2023/07/28/medicaid-unwinding-pandemic/.

Galewitz, Phil. “As Pandemic-Era Medicaid Provisions Lapse, Millions Approach a Coverage Cliff.” Kaiser Health News, Kaiser Family Foundation, 2 Feb. 2023, https://khn.org/news/article/medicaid-unwinding-coverage-loss-states-post-pandemic/.

Kane, Jason, et al. “Disabled People in Florida Still Struggling to Get Medicaid Restored after ‘Unwinding.’” NBC News, NBCUniversal News Group, 3 Sept. 2024, http://www.nbcnews.com/news/amp/rcna169322.