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.

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She received coverage through Floridas 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 Saas 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.

Its just so much to worry about, she said. This is a health care system thats supposed to help.

Medicaids 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 theyve 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. Email Sign-Up

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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 dont 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 its 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 states Medicaid program, has a specialized team that processes applications for home health services, said Mallory McManus, the departments 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 Whitakers home health aide care was cut for 12 days without her receiving any notice. Whitakers 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 sisters 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 Columbias 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 dont 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 Colorados 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 states 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 benfits, 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 theyre 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, Floridas 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 organizations 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 couldnt stand in a line that was 100 people deep. Calls to the states 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 Ive 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 Floridas Medicaid agency who restored her benefits. A home health aide showed up April 12. Saa said shes 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 Contact Us Submit a Story Tip

Just asking questions? That might become illegal, sort of, in New Jersey. Powerful interest groups there are pushing a bill that would overhaul the state Open Public Records Act (OPRA), making it harder for the public to request government documentsand the legislature might vote on it today. One provision would allow state and local agencies to sue people who request too many documents at once.

The bill states that courts can issue a restraining order against requesters who intend to “harass” government agencies or “substantially interrupt the performance of government function.” The order could limit “the number and scope of requests the requestor may make,” or even eliminate the requester’s right to obtain government records statewide.

New Jersey politicians have been salivating over this power. Last year, the Township of Irvington sued an elderly woman, claiming that her frequent requests for information ” bullied and annoyed ” municipal officials. After getting bad press, Irvington backed out of the lawsuitbut then it threatened to have First Amendment lawyer Adam Steinbaugh prosecuted when he dug around for more records on the case.

The League of Municipalities, the New Jersey Conference of Mayors, and the New Jersey Association of Counties all support the bill, arguing that they’ve been swamped with time- and resource-wasting records requests. William Caruso, legislative counsel for the mayors’ group, even claimed that the bill doesn’t go far enough in restricting the public’s ability to demand information.

CJ Griffin, director of the Stein Public Interest Center and vice president of the Board of Trustees for the American Civil Liberties Union of New Jersey, has denounced the bill. “And so what if tons of people want tons of records? It’s OUR government. Every OPRA request means someone is engaged and wants to know what’s going on in their government,” he wrote on social media . (Griffin is currently representing Reason on an OPRA-related matter.)

Other parts of the bill would allow requesters to pay for fast-track access to records, require requesters to be more specific when requesting government emails, and restrict the public’s access to certain types of government metadata. Critics like Griffin say that the bill would benefit commercial requesters while shielding New Jersey’s notoriously corrupt, mobbed-up politics from the public eye.

For example, records obtained under OPRA were important for blowing open the 2014 ” Bridgegate ” scandal, when then-Gov. Chris Christie’s office purposely caused highway traffic in order to punish a political opponent. A former attorney for The Record , the local newspaper that first broke the scandal, has stated that the proposed bill would have made The Record ‘s Bridgegate reporting impossible.

The bill also makes it harder to sue agencies that hide public records. As the law currently stands, people who win a public records lawsuit can force the agency to pay their lawyers’ fees. (The federal Freedom of Information Act and almost all state records laws include the same mechanism.) Under the new bill, courts would only award legal fees if they found the agency to be acting in “bad faith.”

Supporters of the bill say that the current fee-shifting system has to change because it forces taxpayers to pay for honest mistakes. But New Jersey Comptroller Kevin Walsh has implied that curtailing public records access would cost taxpayers more than it saves. The bill, Walsh wrote on social media , “will increase the likelihood of fraud, waste, and abuse. Some of our best tips come from concerned residents who have filed OPRA requests.”

A witness testifying in favor of the bill accidentally demonstrated Walsh’s point. During a state assembly hearing on Friday, a town clerk complained that Easthampton Township had to pay $13,000 in attorney fees after Libertarians for Transparent Government sued for government payroll records in 2018.

As it turns out, the lawsuit uncovered that a police officer had been paid $321,942.17 while suspended. The New Jersey Superior Court ordered the officer to pay back the money in 2020.

Griffin offered her own advice on social media for New Jerseyans concerned with saving money: “Tell agencies to stop violating OPRA! You can’t sue or get fees if they follow the law!”

Red Lobster abruptly closed the doors of at least 50 restaurants nationwide on Monday including a dozen in New York and New Jersey, blindsiding seafood chain employees.

TAGeX Brands, a restaurant liquidator, revealed it is auctioning off kitchen items and furniture from shuttered Red Lobster locations as part of its “largest restaurant equipment sale ever.”

Fourteen locations in New York and New Jersey were “temporarily closed” for the foreseeable future, according to Red Lobster’s website, as the struggling company weighed a possible Chapter 11 bankruptcy filing.

Among the shutdown locations are: Lakewood, NY; Buffalo, NY; Amherst, NY; Williamsville, NY; Rochester, NY; Poughkeepsie, NY; Stony Brook, NY, Kingston; NY; Scarsdale, NY; Nanuet, NY; Ledgewood, NJ; Lawrenceville, NJ; East Brunswick, NJ; Bridgewater, NJ.

Red Lobster which has 649 locations nationwide  has not publicly commented on the closures.

Employees and customers at a Red Lobster in Buffalo were greeted with a sign taped on the glass window that marked the restaurant’s closure, according to WKBW.

“This location is closed. We look forward to serving you at another Red Lobster location in the future,” the sign read.

Ramon Garcia, an employee, told the outlet that he learned of his store’s shutdown from a fellow worker.

Corporate officials allegedly only reached out when they informed the workers that they had three days to clear everything out of the location.

“This happened out of nowhere. All the people that we work with, they’re losing their jobs and not knowing what to expect after that,” Garcia said. “It’s taking a toll on them.”

“I didn’t know we were going bankrupt, but I kind of knew, if you know what I’m saying,” Garcia said. “They were cutting back on a lot of stuff.”

Last month, Red Lobster mulled a decision to file for Chapter 11 bankruptcy to restructure their debts, according to a report.

The seafood chain has sought advice from law firm King & Spalding on how to shed some long-term contracts and renegotiate a chunk of its leases, people with knowledge of the matter told Bloomberg.

In January, Thai Union Group PCL, a Thailand-based seafood giant that owns Red Lobster, revealed its intention to pursue an exit of its minority investment, blaming rising costs and the COVID-19 pandemic.

The combination of COVID-19 pandemic, sustained industry headwinds, higher interest rates and rising material and labor costs have impacted Red Lobster, resulting in prolonged negative financial contributions to Thai Union and its shareholders, Thai Union Groups CEO Thiraphong Chansiri said.

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After detailed analysis, we have determined that Red Lobsters ongoing financial requirements no longer align with our capital allocation priorities and therefore are pursuing an exit of our minority investment.

Thai Union paid $575 million to Golden Gate Capital, Red Lobster’s then-parent company, for a 25 percent stake in the restaurant chain in 2016.

The group claimed Red Lobster logged a share loss of $19 million during the first nine months of 2023.

The restaurant also blamed the “Ultimate Endless Shrimp” deal, which allows customers to spend $20 on all-you-can-eat shrimp, for its $11 million loss in the third quarter last year.

Union Group CFO Ludovic Regis Henri Garnier told Restaurant Business Magazine that the initiative was intended to help “boost traffic” but “it didn’t work” as the prices were raised to $25.

We want to keep it on the menu. And of course we need to be much more careful regarding what are the entry points and what is the price point we are offering for this promotion.

In March, Red Lobster appointed veteran bankruptcy expert Jonathan Tibus as its new CEO.

Red Lobster has since sought a buyer to take over operations, according to CNBC.

The outlet reported last month that one firm was interested in purchasing the company, but the deal never came to fruition.