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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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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

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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

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UK

Eight arrests in connection with two separate terrorism investigations

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Eight arrests in connection with two separate terrorism investigations

Eight men have been arrested by the Metropolitan Police in two unconnected terrorism investigations.

In one operation on Saturday, counter-terror officers arrested five men, four of whom are Iranian nationals. All are in police custody.

The Met said the arrests related to a “suspected plot to target a specific premises”.

In an update shortly after midnight, the force said: “Officers have been in contact with the affected site to make them aware and provide relevant advice and support, but for operational reasons, we are not able to provide further information at this time.”

It added officers were carrying out searches at a number of addresses in the Greater Manchester, London and Swindon areas in connection with the investigation.

It said those detained were:

• A 29-year-old man arrested in the Swindon area
• A 46-year-old man arrested in west London
• A 29-year-old man arrested in the Stockport area
• A 40-year-old man arrested in the Rochdale area
• A man whose age was not confirmed arrested in the Manchester area.

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Commander Dominic Murphy, head of the Met’s Counter Terrorism Command, said: “This is a fast-moving investigation and we are working closely with those at the affected site to keep them updated.

“The investigation is still in its early stages and we are exploring various lines of enquiry to establish any potential motivation as well as to identify whether there may be any further risk to the public linked to this matter.

“We understand the public may be concerned and as always, I would ask them to remain vigilant and if they see or hear anything that concerns them, then to contact us.

“We are working closely with local officers in the areas where we have made arrests today and I’d like to thank police colleagues around the country for their ongoing support.”

Terror arrests in separate investigation

Police also arrested three further Iranian nationals in London on Saturday as part of another, unrelated counter terror investigation.

The suspects were detained under section 27 of the National Security Act 2023, which allows police to arrest those suspected of being “involved in foreign power threat activity”.

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Home secretary Yvette Cooper said in a statement: “I want to thank the police and our security services for the action they have taken to keep our country safe.

“Protecting national security is the first duty of government and our police and security services have our strong support in their vital work.”

She added: “These are serious events that demonstrate the ongoing requirement to adapt our response to national security threats.”

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Pro-crypto Democrats pull support for stablecoin bill in last minute

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Pro-crypto Democrats pull support for stablecoin bill in last minute

Pro-crypto Democrats pull support for stablecoin bill in last minute

A group of US Senate Democrats known for supporting the crypto industry have said they would oppose a Republican-led stablecoin bill if it moves forward in its current form.

The move threatens to stall legislation that could establish the first US regulatory framework for stablecoins, according to a May 3 report from Politico.

Per the report, nine Senate Democrats said in a joint statement that the bill “still has numerous issues that must be addressed.” They warned they would not support a procedural vote to advance the legislation unless changes are made.

Among the signatories were Senators Ruben Gallego, Mark Warner, Lisa Blunt Rochester and Andy Kim — all of whom had previously backed the bill when it passed through the Senate Banking Committee in March.

The bill, introduced by Senator Bill Hagerty, is formally known as the Guiding and Establishing National Innovation for US Stablecoins (GENIUS) Act.

Related: Fed’s Powell reasserts support for stablecoin legislation

Senate prepares to vote on stablecoin bill

The Senate is expected to begin floor consideration of the bill in the coming days, with the first vote potentially taking place next week.

The bill has been championed by the crypto industry as a landmark step toward regulatory clarity. However, the Democrats’ about-face reflects growing unease within the party.

Although revisions were made to the bill after its committee approval to address Democratic concerns, the lawmakers said the changes fell short. They called for stronger safeguards related to Anti-Money Laundering, national security, foreign issuers, and accountability measures for noncompliant actors.

The statement was also signed by Senators Raphael Warnock, Catherine Cortez Masto, Ben Ray Luján, John Hickenlooper and Adam Schiff.

Pro-crypto Democrats pull support for stablecoin bill in last minute
A copy of the statement. Source: Alex Thorn

Senator Kirsten Gillibrand and Senator Angela Alsobrooks were absent from the list, who co-sponsored the bill alongside Hagerty.

Despite their objections, the Democratic senators emphasized their commitment to shaping responsible crypto regulation. They reportedly said they “are eager to continue working with our colleagues to address these issues.”

Related: US banks are ‘free to begin supporting Bitcoin’

Crypto needs a stablecoin bill

On April 27, Caitlin Long, founder and CEO of Custodia Bank, criticized the US Federal Reserve for quietly maintaining a key anti-crypto policy that favors big-bank-issued stablecoins, despite relaxing crypto partnership rules for banks.

Long explained that while the Fed recently rescinded four prior crypto guidelines, a Jan. 27, 2023, statement was left intact in coordination with the Biden administration.

The guidance, according to Long, blocks banks from engaging directly with crypto assets and prohibits them from issuing stablecoins on permissionless blockchains.

However, Long noted that once a federal stablecoin bill becomes law, it could override the Fed’s stance. “Congress should hurry up,” she urged.

Magazine: Financial nihilism in crypto is over — It’s time to dream big again

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UK

Pictured: Boy killed in Gateshead industrial estate fire – 14 children arrested on suspicion of manslaughter

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Pictured: Boy killed in Gateshead industrial estate fire - 14 children arrested on suspicion of manslaughter

Tributes have been paid to 14-year-old Layton Carr who died in a fire at an industrial estate.

Eleven boys and three girls, aged between 11 and 14 years, have been arrested on suspicion of manslaughter after the incident in Gateshead on Friday. They remain in police custody.

Drone view showing the aftermath of a fire at Fairfield industrial park at Bill Quay, Gateshead
Image:
Police were alerted to a fire at Fairfield industrial park in the Bill Quay area

Firefighters raced to Fairfield industrial park in the Bill Quay area shortly after 8pm, putting out the blaze a short time later.

Police then issued an appeal for a missing boy, Layton Carr, who was believed to be in the area at the time.

In a statement, the force said that “sadly, following searches, a body believed to be that of 14-year-old Layton Carr was located deceased inside the building”.

Layton’s next of kin have been informed and are being supported by specialist officers, police added.

Pic: North News and Pictures
Image:
Layton has been described as a ‘beautiful soul’

A fundraising page on GoFundMe has been set up to help Layton’s mother pay for funeral costs.

Organiser Stephanie Simpson said: “The last thing Georgia needs to stress trying to pay for a funeral for her Boy Any donations will help thank you.”

One tribute in a Facebook post read: “Can’t believe I’m writing this my nephew RIP Layton 💔 forever 14 you’ll be a massive miss, thinking of my sister and 2 beautiful nieces right now.”

Another added: “My boy ❤️ my baby cousin, my Layton. Nothing will ever come close to the pain I feel right now. Forever 14. I’ll miss you sausage.”

A third said: “Rest in peace big lad such a beautiful soul taken far to soon my thoughts are with you Gee stay strong girl hear for u always.”

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Compensation scheme scrapped for child sexual abuse victims

Detective Chief Inspector Louise Jenkins, of Northumbria Police, also said: “This is an extremely tragic incident where a boy has sadly lost his life.”

She added that the force’s “thoughts are with Layton’s family as they begin to attempt to process the loss of their loved one”.

They are working to establish “the full circumstances surrounding the incident” and officers will be in the area to “offer reassurance to the public”, she added.

A cordon remains in place at the site while police carry out enquiries.

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