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Medicaid ‘Unwinding’ Decried as Biased Against Disabled People
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MEDICAID ‘UNWINDING’ DECRIED AS BIASED AGAINST DISABLED PEOPLE

By Daniel Chang May 14, 2024

Republish This Story


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)

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.

This story also ran on USA Today. It can be republished for free.


SHARE YOUR STORY WITH US

Have you or someone you know with disabilities unexpectedly lost Medicaid
benefits since April 2023? Tell us about it here.

contact us

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

“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.

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.

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“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.

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.

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)

“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.”

Have you or someone you know with disabilities unexpectedly lost Medicaid
benefits since April 2023? Tell KFF Health News about it here.

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

Daniel Chang: dchang@kff.org, @dchangmiami


RELATED TOPICS

 * Insurance
 * Medicaid
 * States
 * Colorado
 * Disabilities
 * Disparities
 * District Of Columbia
 * Florida
 * Texas

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MEDICAID ‘UNWINDING’ DECRIED AS BIASED AGAINST DISABLED PEOPLE

By Daniel Chang May 14, 2024

Article HTML <h1>Medicaid ‘Unwinding’ Decried as Biased Against Disabled
People</h1> <span class="byline">Daniel Chang</span> <p>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.</p> <h3> <a
href="https://kaiserfamilyfoundation.wufoo.com/forms/p1ma1xya097bwuu/"> Share
Your Story With Us </a> </h3> <p>Have you or someone you know with disabilities
unexpectedly lost Medicaid benefits since April 2023? Tell us about it <a
href="https://kaiserfamilyfoundation.wufoo.com/forms/p1ma1xya097bwuu/">here</a>.</p>
<a
href="https://kaiserfamilyfoundation.wufoo.com/forms/p1ma1xya097bwuu/">contact
us</a> <p>She received coverage through Florida’s Medicaid program until it
abruptly stopped at the end of March, she said.</p> <p>“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.</p> <p>“It’s just
so much to worry about,” she said. “This is a health care system that’s supposed
to help.”</p> <p>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.</p>
<p>In <a
href="https://healthlaw.org/resource/ocr-complaint-advocates-urge-hhs-office-for-civil-rights-to-stop-colorado-medicaid-cuts-citing-disabilities-act-violations/">Colorado</a>,
<a
href="https://healthlaw.org/wp-content/uploads/2024/03/TX-ADA-Unwinding-Complaint.pdf">Texas</a>,
and <a
href="https://healthlaw.org/wp-content/uploads/2024/03/DC-ADA-Unwinding-Complaint.pdf">Washington,
D.C</a>., 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.</p> <p>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.</p> <p>“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 <a
href="https://healthlaw.org/team/elizabeth-edwards/">Elizabeth Edwards</a>, 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.”</p> <p>At least 21 million people nationwide have been disenrolled from
Medicaid since states began eligibility redeterminations in spring 2023,
according to a <a
href="https://www.kff.org/report-section/medicaid-enrollment-and-unwinding-tracker-overview/">KFF
analysis</a>.</p> <p>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.</p> <p>As states prepared for the
unwinding, the Centers for Medicare & Medicaid Services, the federal agency that
regulates Medicaid, <a
href="https://www.medicaid.gov/sites/default/files/2023-02/accessibility-unwinding-slides.pdf">advised
states</a> 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.</p> <p>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 <a
href="https://www.myflfamilies.com/news-and-events/media-contact-information/headquarters-communications-staff">Mallory
McManus</a>, the department’s communications director.</p> <p>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.”</p> <p>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.</p> <p>“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.”</p> <p>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.</p> <p>Medicaid
reviews have been complicated, in part, by the fact that eligibility works
differently for home health services than for general coverage, based on <a
href="https://www.medicaid.gov/Federal-Policy-Guidance/Downloads/smd21004.pdf">federal
regulations</a> that give states more flexibility to determine financial
eligibility. Income limits for home health services are higher, for instance,
and assets are counted differently.</p> <p>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.</p> <p>The state was not taking that into consideration, said <a
href="https://www.texasbar.com/AM/Template.cfm?Section=Find_A_Lawyer&template=/Customsource/MemberDirectory/MemberDirectoryDetail.cfm&ContactID=328172">Terry
Anstee</a>, a supervising attorney for community integration at Disability
Rights Texas, a nonprofit advocacy group.</p> <p>Even a brief lapse in Medicaid
home health services can fracture relationships that took years to build.</p>
<p>“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.</p> <p>Nearly all states have a waiting list for
home health services. About <a
href="https://www.kff.org/medicaid/state-indicator/medicaid-hcbs-waiver-waiting-list-enrollment-by-target-population-and-whether-states-screen-for-eligibility/?currentTimeframe=0&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22asc%22%7D">700,000
people </a>were on waiting lists in 2023, most of them with intellectual and
developmental disabilities, according to KFF data.</p> <p>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.”</p> <p>CMS <a
href="https://www.federalregister.gov/documents/2024/04/02/2024-06566/medicaid-program-streamlining-the-medicaid-childrens-health-insurance-program-and-basic-health">finalized
a rule</a> 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.</p> <p>Staff turnover and vacancies at local Medicaid agencies
have contributed to backlogs, according to <a
href="https://healthlaw.org/resource/ocr-complaint-advocates-urge-hhs-office-for-civil-rights-to-stop-colorado-medicaid-cuts-citing-disabilities-act-violations/">complaints
filed with two federal agencies</a> focused on civil rights.</p> <p>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.</p> <p>Advocates for Medicaid enrollees have also
complained to the Federal Trade Commission about <a
href="https://healthlaw.org/wp-content/uploads/2024/01/NHeLP-EPIC-Upturn-FTC-Deloitte-Complaint.pdf">faulty
eligibility systems</a> developed by Deloitte, a global consulting firm that
contracts with about two dozen states to design, implement, or operate automated
benefits systems.</p> <p>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.</p> <p>Deloitte declined to comment on specific
state issues.</p> <p>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 <a
href="https://myemail-api.constantcontact.com/IMPORTANT-COMMUNICATION-Reinstatement-of-LTSS-members-scheduled-to-lose-eligibility-effective-2-29-2024-due-to-an-unintended-sys.html?soid=1120776134797&aid=TZQ0vRcYp6A">wrongful
terminations</a> in February.</p> <p>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 <a
href="https://www.floridahealthjustice.org/miriam-harmatz.html">Miriam
Harmatz</a>, founder of the Florida Health Justice Project.</p> <p>“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.”</p> <p>But some disabled people
are worried about having to repay the cost of their care.</p> <p>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.</p>
<p>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.</p> <p>The Florida Department of Children and Families would not say
how many people with disabilities had lost Medicaid home health services.</p>
<p>But in Miami-Dade, Florida’s most populous county, the <a
href="https://allianceforaging.org/">Alliance for Aging</a>, 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 <a
href="https://allianceforaging.org/about-us/staff">Lisa Mele</a>, the
organization’s director of its Aging and Disability Resources Center.</p> <p>“So
many people are calling us,” she said.</p> <p>States are not tracking the
numbers, so “the impact is not clear,” Edwards said. “It’s a really complicated
struggle.”</p> <p>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.</p>
<p>“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.”</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>“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.”</p> <p><em>Have you or someone you know with disabilities
unexpectedly lost Medicaid benefits since April 2023? Tell KFF Health News about
it <a
href="https://kaiserfamilyfoundation.wufoo.com/forms/p1ma1xya097bwuu/">here</a>.</em></p>
<p><em>KFF Health News correspondents Samantha Liss and Rachana Pradhan
contributed to this report.</em></p> Copy HTML

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