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Health News
MEDICAID ‘UNWINDING’ DECRIED AS BIASED AGAINST DISABLED PEOPLE
Credit: arvin.temkar@ajc.com
Credit: arvin.temkar@ajc.com
Medicaid’s home and community-based services are designed to help people who
have disabilities and need help with everyday activities, stay out of a nursing
facility. But people say they are losing benefits, including home health aides,
with little or no notice. (Arvin Temkar / arvin.temkar@ajc.com)
By Daniel Chang – KFF Health News
4 hours ago
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 cook, bathe and dress, go to the doctor, pick up
medications, and accomplish other daily tasks.
She received coverage through Florida’s Medicaid program until it abruptly
stopped at the end of March, she said.
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“Every day the anxiety builds,” said Saa, who lost her home health aide for 11
days, starting April 1, despite being eligible. The state has since restored
Saa’s home health aide service, but during the gap she leaned on her mother and
her 23- and 15-year-old daughters, while struggling to regain her Medicaid
benefits.
“It’s just so much to worry about,” she said. “This is a health care system
that’s supposed to help.”
Medicaid’s home and community-based services are designed to help people like
Saa, who have disabilities and need help with everyday activities, stay out of a
nursing facility. But people are losing benefits with little or no notice,
getting bad advice when they call for information, and facing major disruptions
in care while they wait for the issue to get sorted out, according to attorneys
and advocates who are hearing from patients.
Credit: (Jacqueline Saa)
Credit: (Jacqueline Saa)
Jacqueline Saa has a progressive genetic condition called Ehlers-Danlos syndrome
that leaves her unable to stand and walk on her own. Florida's Medicaid program
provides her with a home health aide to help her with various everyday tasks —
but she said her coverage abruptly stopped at the end of March with little
notice. (Jacqueline Saa)
Combined Shape More
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 group has not filed a lawsuit in Florida, though
its attorneys say they’ve heard of many of the same problems there.
Attorneys nationwide say the special needs of disabled people were not
prioritized as states began to review eligibility for Medicaid enrollees after a
pandemic-era mandate for coverage expired in March 2023.
“Instead of monitoring and ensuring that people with disabilities could make
their way through the process, they sort of treated them like everyone else with
Medicaid,” said Elizabeth Edwards, a senior attorney for the National Health Law
Program. Federal law puts an “obligation on states to make sure people with
disabilities don’t get missed.”
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 an immense undertaking, Edwards said, and some
states did not take extra steps to set up a special telephone line for those
with disabilities, for example, so people could renew their coverage or contact
a case manager.
As states prepared for the unwinding, the Centers for Medicare & Medicaid
Services, the federal agency that regulates Medicaid, advised states that they
must give people with disabilities the help they need to benefit from the
program, including specialized 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 a specialized team that processes applications
for home health services, said Mallory McManus, the department’s communications
director.
Credit: Allison Pellegrin
Credit: Allison Pellegrin
Rhea Whitaker’s home health aide care was cut for 12 days — without her
receiving any notice. Whitaker’s sister, Allison Pellegrin, took time off from
work to take care of Whitaker, who was disabled by a severe brain injury in
2006. (Allison Pellegrin)
People with disabilities disenrolled from Medicaid services were “properly
noticed and either did not respond timely or no longer met financial eligibility
requirements,” McManus said, noting that people “would have been contacted by us
up to 13 times via 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 never happened for
her family.
“They just cut off the benefits without a call, without a letter or anything
stating that the benefits would be terminating,” Pellegrin said. Her sister’s
home health aide, whom she had used every day for nearly eight years, stopped
service for 12 days. “If I’m getting everything else in the mail,” she said, “it
seems weird that after 13 times 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 was disabled by a severe
brain injury in 2006.
Medicaid reviews have been complicated, in part, by the fact that eligibility
works differently for home health services than for general coverage, based on
federal regulations that give states more flexibility to determine financial
eligibility. Income limits for home health services are higher, for instance,
and assets are counted differently.
In Texas, a parent in a household of three would 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 state was not taking that into consideration, said Terry Anstee, a
supervising attorney for community integration at Disability Rights Texas, a
nonprofit advocacy group.
Even a brief lapse in Medicaid home health services can fracture relationships
that took years to build.
“It may be very difficult for that person who lost that attendant to find
another attendant,” Anstee said, because of workforce 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, said the agency is committed to
ensuring that people with disabilities receiving home health services “can renew
their Medicaid coverage with as little red tape as possible.”
CMS finalized a rule this year for states to monitor Medicaid home health
services. For example, CMS will now track how long it takes for people who need
home health care to receive the 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 focused on
civil rights.
The District of Columbia’s Medicaid agency requires that case managers help
people with disabilities complete renewals. However, a complaint says, case
managers are the only ones who can help enrollees complete eligibility reviews
and, sometimes, they don’t do their jobs.
Advocates for Medicaid enrollees have also complained to the Federal Trade
Commission about faulty eligibility systems developed by Deloitte, a global
consulting firm that contracts with about two dozen states to design, implement,
or operate automated benefits systems.
KFF Health News found that multiple audits of Colorado’s eligibility system,
managed by Deloitte, uncovered errors in notices sent to enrollees. A 2023
review by the Colorado Office of the State Auditor found that 90% of sampled
notices contained problems, some of which violate the state’s Medicaid rules.
The audit blamed “flaws in system design” for populating notices with incorrect
dates.
Deloitte declined to comment on specific state issues.
In March, Colorado officials paused disenrollment for people on Medicaid who
received home health services, which includes people with disabilities, after a
“system update” led to wrongful terminations in February.
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.”
KFF Health News correspondents Samantha Liss and Rachana Pradhan contributed to
this report.
KFF Health News is a national newsroom that produces in-depth journalism about
health issues and is one of the core operating programs at KFF—an independent
source of health policy research, polling, and journalism. Learn more about KFF.
About the Author
Daniel Chang
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