Connect with us

Published

on

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 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

Subscribe to KFF Health News' free Morning Briefing. Your Email Address Sign Up

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

Continue Reading

Entertainment

Gillian Anderson warns UK homelessness ‘will only get worse’

Published

on

By

Gillian Anderson warns UK homelessness 'will only get worse'

Gillian Anderson has warned homelessness is a growing problem in the UK – one that will only get worse if we enter a recession.

The award-winning actress, who is playing a woman facing homelessness along with her husband in her latest film, The Salt Path, told Sky News: “It’s interesting because I feel like it’s even changed in the UK in the last little while.”

Born in Chicago, and now living in London, she explained: “I’m used to seeing it so much in Vancouver and California and other areas that I spent time. You don’t often see it as much in the UK.”

Her co-star in the film, White Lotus actor Jason Isaacs, chips in: “You do now.”

“It’s now becoming more and more prevalent since COVID,” said Anderson, “and the current financial situation in the country and around the world.

“It’s a topic that I think will be more and more in the forefront of people’s minds, particularly if we end up going into a recession.”

Pic: Steve Tanner/Black Bear
Image:
Gillian Anderson and Jason Isaacs in The Salt Path. Pic: Steve Tanner/Black Bear

The film is based on Raynor Winn’s 2018 memoir, which depicts her and her husband’s 630-mile trek along the Cornish, Devon and Dorset coastline, walking from Minehead, Somerset to Land’s End.

Written from her notes on the journey, The Salt Path went on to sell over a million copies worldwide and spent nearly two years in The Sunday Times bestseller list. Winn’s since written two more memoirs.

Isaacs, who plays her husband Moth Winn in the movie, told Sky News that Winn told him she “hopes [the film] makes people look at homeless people when they walk by in a different light, give them a second look and maybe talk to them”.

With record levels of homelessness in the UK, with a recent Financial Times analysis showing one in every 200 households in the UK is experiencing homelessness, the cost of living crisis is worsening an already serious problem.

Pic: Steve Tanner/Black Bear
Image:
Pic: Steve Tanner/Black Bear

The film sees Ray and Winn let down by the system, first by the court which evicts them from their home, then by the council which tells them despite a terminal diagnosis they don’t qualify for emergency housing.

Following the loss of their family farm shortly after Moth’s shock terminal diagnosis with rare neurological condition Corticobasal Degeneration (CBD), the couple find solace in nature.

They set off with just a tent and two backpacks to walk the coastal path.

Isaacs says living in a transient way comes naturally to actors, admitting like his character, he too “lives out of a suitcase” and is “away on jobs often”.

Read more:
Is this every actor’s bucket list job?

Pic: Steve Tanner/Black Bear
Image:
Pic: Steve Tanner/Black Bear

Shot in 2023 across Somerset, Devon, Cornwall and Wales, Anderson says as a city-dweller, the locations had an impact on her.

Anderson reveals: “As I’ve gotten older, I have become more aware of nature than […] when I was younger, and certainly in filming this film and being outside and so much of nature being a third character, it did shift my thinking around it.”

Meanwhile, Isaacs says he discovered a “third character” leading the film just the day before our interview, when speaking to Winn on the phone.

Isaacs says the author told him: “I feel like there’s three characters in the film,” going on, “I thought she was going to say nature, but she said, ‘No, that path'”.

Isaacs elaborates: “Not just nature, but that path where the various biblical landscapes you get and the animals, they matter.

“The things that happen on that path were a huge part of their own personal story and hopefully the audience’s journey as well.”

The Salt Path comes to UK cinemas on Friday 30 May.

Continue Reading

Politics

PM could lift controversial benefit cap in budget – as Farage makes two big election promises

Published

on

By

PM could lift controversial benefit cap in budget - as Farage makes two big election promises

Sir Keir Starmer could decide to lift the two-child benefit cap in the autumn budget, amid further pressure from Nigel Farage to appeal to traditional Labour voters.

The Reform leader will use a speech this week to commit his party to scrapping the two-child cap, as well as reinstating winter fuel payments in full.

The prime minister – who took Westminster by surprise at PMQs by revealing his intention to row back on the winter fuel cut – has previously said he would like to lift the two-child cap if the government could afford it.

There are now mounting suggestions an easing of the controversial benefit restriction may be unveiled when the chancellor delivers the budget later this year.

According to The Observer, Sir Keir told cabinet ministers he wanted to axe the measure – and asked the Treasury to look for ways to fund the move.

It comes after the government delayed the release of its child poverty strategy, which is expected to recommend the divisive cap – introduced by former Tory chancellor George Osborne – is scrapped.

Please use Chrome browser for a more accessible video player

Why did Labour delay their child poverty strategy?

Ministers have already said any changes to winter fuel payments, triggered by mounting political pressure, would only be made when the government’s next fiscal event rolls round.

The Financial Times reported it may be done by restoring the benefit to all pensioners, with the cash needed being clawed back from the wealthy through the tax system.

The payment was taken from more than 10 million pensioners this winter after it became means-tested, and its unpopularity was a big factor in Labour’s battering at recent elections.

Before Wednesday’s PMQs, the prime minister and chancellor had insisted there would be no U-turn.

More from Sky News:
PM’s winter fuel claim ‘not credible’
Starmer vs Reeves – the ‘rift’ in Downing Street

Please use Chrome browser for a more accessible video player

Will winter fuel U-turn happen?

Many Labour MPs have called for the government to do more to help the poorest in society, amid mounting concern over the impact of wider benefit reforms.

Former prime minister Gordon Brown this week told Sky News the two-child cap was “pretty discriminatory” and could be scrapped by raising money through a tax on the gambling industry.

Please use Chrome browser for a more accessible video player

Brown questioned over winter fuel U-turn

Mr Farage, who believes Reform UK can win the next election, will this week accuse Sir Keir of being “out of touch with working people”.

In a speech first reported by The Sunday Telegraph, he is expected to say: “It’s going to be these very same working people that will vote Reform at the next election and kick Labour out of government.”

Continue Reading

Politics

Sir Alan Bates attacks ‘kangaroo court’ Post Office scheme after ‘take it or leave it’ offer

Published

on

By

Sir Alan Bates attacks 'kangaroo court' Post Office scheme after 'take it or leave it' offer

Sir Alan Bates has accused the government of presiding over a “quasi kangaroo court” for Post Office compensation.

Writing in The Sunday Times, the campaigner, who led a years-long effort for justice for sub-postmasters, revealed he had been given a “take it or leave it” offer that was less than half of his original claim.

“The sub-postmaster compensation schemes have been turned into quasi-kangaroo courts in which the Department for Business and Trade sits in judgement of the claims and alters the goal posts as and when it chooses,” he said.

“Claims are, and have been, knocked back on the basis that legally you would not be able to make them, or that the parameters of the scheme do not extend to certain items.”

More than 900 sub-postmasters were prosecuted between 1999 and 2015 after faulty Horizon accounting software made it look as if money was missing from their accounts.

Many are still waiting for compensation despite the previous government saying those who had their convictions quashed were eligible for £600,000 payouts.

Please use Chrome browser for a more accessible video player

‘It still gives me nightmares’

After the Post Office terminated his contract over a false shortfall in 2003, Sir Alan began seeking out other sub-postmasters and eventually took the Post Office to court.

More on Post Office Scandal

A group litigation order (GLO) scheme was set up to achieve redress for 555 claimants who took the Post Office to the High Court between 2017 and 2019.

Sir Alan, who was portrayed by actor Toby Jones in ITV drama Mr Bates Vs The Post Office, has called for an independent body to be created to deliver compensation.

He added that promises the compensation schemes would be “non-legalistic” had turned out to be “worthless”.

It is understood around 80% of postmasters in Sir Alan’s group have accepted a full and final redress, or been paid most of their offer.

Read more:
Post Office scandal explained

Who are the key figures in the scandal?

Please use Chrome browser for a more accessible video player

‘Lives were destroyed’

A Department for Business and Trade spokesperson told Sky News: “We pay tribute to all the postmasters who’ve suffered from this scandal, including Sir Alan for his tireless campaign for justice, and we have quadrupled the total amount paid to postmasters since entering government.

“We recognise there will be an absence of evidence given the length of time which has passed, and we therefore aim to give the benefit of the doubt to postmasters as far as possible.

“Anyone unhappy with their offer can have their case reviewed by a panel of experts, which is independent of the government.”

Continue Reading

Trending