Jacqueline Sah, 43, has a genetic condition that means she can’t stand or walk on her own, and she can’t work. For the past four years, Sah has relied on home health aides to cook, bathe and dress her every weekday. Sah was covered by Florida’s Medicaid program, but her coverage was suddenly cut off at the end of March.
“The anxiety grows every day,” said Sah, who lost her home health aide for 11 days starting April 1, even though she was eligible. The state later restored Sah’s home health aide services, but during that time she relied on her mother and two daughters, ages 23 and 15, and struggled to get her Medicaid benefits reinstated.
“There’s so much to worry about,” she said. “This is a health care system that’s supposed to help us.”
Medicaid home and community-based services are designed to help people like Saa, who have disabilities and need help with daily activities, stay out of nursing homes, but lawyers and advocates who speak to patients say people are losing their benefits with little or no notice, getting misguided advice when they call for information or experiencing major disruptions to their care until their problems are resolved.
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 against two federal agencies for discrimination against people with disabilities. The group has not filed a lawsuit in Florida, but its lawyers say they have heard of many similar problems there.
Lawyers across the country have argued that as states began reassessing eligibility for Medicaid enrollees after pandemic-era health insurance mandates expired in March 2023, the special needs of people with disabilities were not prioritized.
“Instead of monitoring and making sure that people with disabilities made it through the process, they were treating them just like any other Medicaid recipient,” said Elizabeth Edwards, a senior attorney at the National Health Law Program. Federal law “puts an obligation on states to make sure that people with disabilities aren’t falling through the cracks.”
At least 21 million people nationwide have dropped out of Medicaid since states began redetermining eligibility in the spring of 2023, according to a KFF analysis.
Edwards said as many people know, unwinding the system is a massive task and some states have not taken additional steps, such as setting up dedicated phone lines for people with disabilities so they can renew their insurance or contact a case manager.
As states prepare to phase out the program, the Centers for Medicare & Medicaid Services, the federal agency that regulates Medicaid, has recommended that states must provide the assistance people with disabilities need to access benefits, including special communication for the deaf and blind.
The Florida Department of Children and Families, which reviews eligibility for the state’s Medicaid program, has a specialized team that processes applications for home health services, said Mallory McManus, the department’s communications director.
Those with disabilities who were disenrolled from Medicaid services “were properly notified but either did not respond in a timely manner or no longer met financial eligibility requirements,” McManus said, noting that they would have been contacted up to 13 times by phone, mail, email and text message before the disenrollment process was completed.
Ormond Beach resident Allison Pellegrin, who lives with her sister, Leah Whitaker, who is visually and cognitively impaired, said nothing like that has ever happened to her family.
Leah Whitaker’s care as a home health aide was terminated without notice for 12 days after her sister, Allison Peregrine, took time off work to care for her mother after she was left disabled by a severe brain injury in 2006.
“They cut off my benefits without a phone call, a letter or anything to let me know my benefits were being cut off,” Pellegrin said. Her sister’s home health aide, who she used daily for nearly eight years, stopped her services for 12 days. “It’s weird that I sent 13 packages and never got one, when everything else I get in the mail,” she said.
Ms. Peregrine, 58, a sales manager who has health insurance through her employer, took time off work to care for Ms. Whittaker, 56, who was disabled after suffering a severe brain injury in 2006.
Medicaid is complicated in part because federal regulations give states more flexibility in determining financial eligibility and they determine eligibility differently for home health services and general health insurance. For example, home health services have higher income limits and assets are calculated differently.
In Texas, one parent in a family of three must earn no more than $344 a month to qualify for Medicaid, and most adults with disabilities can qualify for Medicaid home health services if they make up to $2,800 a month, even if they have no dependents.
Terry Anstee, supervising attorney for community integration at Disability Rights Texas, a nonprofit advocacy group, said the state hasn’t taken that into consideration.
Even a temporary interruption in Medicaid home health services can disrupt relationships that have taken years to build.
“If someone loses a carer it can be very difficult to find another,” Anstee said, due to labour shortages and high demand for carers and nurses.
Nearly every state has a waiting list for home health care services. According to KFF data, there will be about 700,000 people on the waiting list in 2023, most of whom have intellectual or developmental disabilities.
CMS Deputy Commissioner Daniel Tsai said the agency is committed to making it as hassle-free as possible for people with disabilities who receive home health care services to renew their Medicaid coverage.
CMS finalized rules this year to help states monitor Medicaid home health services. For example, it will require CMS to track how long it takes people who need home health care to receive services and states to track how long people stay on waiting lists.
Staff turnover and vacancies at local Medicaid agencies are contributing to the growing backlog, according to complaints filed with two federal agencies that focus on civil rights issues.
The District of Columbia Medicaid agency requires case managers to help people with disabilities complete renewals, but the complaints say only case managers can help people review their eligibility, and sometimes they don’t do their job.
Advocates for Medicaid enrollees have also filed complaints with the Federal Trade Commission about a flawed eligibility system developed by Deloitte, a global consulting firm that has contracts with about two dozen states to design, implement and operate automated benefits systems.
KFF Health News found that multiple audits of Colorado’s eligibility system, administered by Deloitte, found errors in notices sent to enrollees. A 2023 review by the Colorado State Auditor’s Office found that 90% of sample notices had issues, some of which violated state Medicaid rules. The audit cited “system design flaws” as the reason the incorrect dates were entered on the notices.
Deloitte declined to comment on specific state issues.
Colorado officials in March suspended disenrollment of Medicaid enrollees receiving home health services, including those with disabilities, after a “system update” in February led to improper disenrollments.
Miriam Harmatz, an attorney and founder of the Florida Health Justice Project, said another common problem is that people are told to reapply and then their benefits are immediately terminated, rather than appealing the cancellation, which would guarantee coverage while the claim is investigated.
“What’s being recommended to them is not appropriate and the best way to protect their legal rights is to appeal,” Harmatz said.
However, some people with disabilities worry about having to repay care costs.
Just before her benefits were due to be cut, Sarr, who lives in Davie, received a letter saying she “may be liable to pay back benefits” if she lost her appeal.
Harmatz said most recipients’ incomes and assets haven’t increased significantly and their circumstances are unlikely to improve, so the state should consider them still eligible and keep them on insurance.
DCF did not disclose how many people with disabilities lost Medicaid home health services.
But in Miami-Dade County, the most populous, the Alliance for Aging, a nonprofit that helps older and disabled people apply for Medicaid, saw requests for assistance jump from 58 in March to 146 in April, said Lisa Mele, director of the group’s Aging and Disability Resource Center.
“A lot of people call us,” she said.
Because states aren’t tracking the numbers, “the impact is unclear,” Edwards said. “It’s a really complicated fight.”
After hearing from a social worker that her benefits would expire at the end of this month, Sarr filed an appeal on March 29. She went to see the social worker, but was unable to wait in line with about 100 other people. She called the state’s Medicaid eligibility agency, to no avail, she said.
“When I finally got through to a customer service representative, she literally read me the same explanation that I had read,” Sah said. “I tried my best.”
Sah canceled her contract with a home health aide because she said she lives on a limited Social Security disability pension and can’t afford the care costs.
On April 10, she received a letter from the state saying her Medicaid had been reinstated, but later learned her plan no longer covered home health care.
The next day, the group put her in touch with Florida’s Medicaid agency, who reinstated her benefits, Sarr said. A health worker arrived on April 12. Sarr said she was grateful but worried about her future.
“The hardest part about that time was knowing it could happen at any time, and not because I did anything wrong,” she said.
Have you or someone you know with a disability unexpectedly lost Medicaid benefits after April 2023? Tell KFF Health News about it here.
KFF Health News Correspondents Samantha Liss and Rachana Pradhan contributed to this report.
KFF Health News is a core operating program of KFF, a national newsroom producing in-depth journalism on health issues and an independent source of health policy research, polling and journalism. Learn more about KFF here.