Disabled people in Florida still struggling to get Medicaid restored after 'unwinding'

Cerebral palsy has left Lauren Eakin fully bedridden in a wheelchair and with virtually no sight. In the case of Eakin, 34 years, she had a house of her own and the caregivers’ help her with almost everything for years. This summer she loses most of her moderate level of autonomy as the state of Florida excludes her from most of her vital Medicaid benefits. 
 
It is practically impossible for her but she had to say it: ‘I need help for the rest of my life. ’ “From the time I get up to the time I have my meals to cooking my meals to going out into the community, I require help majority of the time I would say round the clock” she stated. 
 
Eakin’s care team that again through Medicaid assist her to have a somewhat or a normal life as she gets to travel for her advocacy in the community and this get play baseball with the local team. 
 
The Medicaid coverage that Eakin had was terminated in June and she only noticed this after she was unable to pay her caregivers. ALSO, they significantly cut down on hours worked. And that meant that Eakin was left alone at night and for over one month she could not get out of bed to go to the bathroom or leave the apartment in case of an emergency. 
 
“It was pure panic,” said Eakin “because I’m like, ‘What the heck happened’?” 
 
During the pandemic there was a contingency rule that states had to continue to offer health care coverage to all the Medicaid recipients even when the recipient was no more eligible to be so. Latterly, last year, new rules for the eligibility of the program were brought back when the Covid public health emergency was over. 
 
How Florida flopped in a nationwide re-evaluation of eligibility for enrollees in Medicaid, the government-backed health insurance for those with low incomes or disabilities. 
 
According to the health policy nonprofit, KFF, over 25 million people in the U. S were left without coverage during the so-called ‘unwinding’ of Medicaid. About 70% of those people had their coverage cancelled due to the policy-related factors such as administrative failure, while others may not require coverage for other reasons, for instance, due to change of wealth status. 
 
Dropped with little notice 
 
Melissa Mazaeda, the care coordinator J&M Support Coordination from the Florida, has reported that procedural errors have been more sensitive if not hectic for the people with development disabilities, especially when it comes to renewals as they need to be helped by other individuals. Disabled individuals complained that the majority was placed in the wrong Medicaid categories, expelled without prior notice and failed to get adequate assistance once they were disenrolled. 
 
According to Mazaeda, states should never have kicked the developmentally disabled off Medicaid in the first place. 
 
“They are never going to not need Medicaid,” she said, recalling that one does not recover from Down syndrome, cure cerebral palsy, spina bifida, or autism. “That’s exactly what they are going to need services for a lifetime And the foundation that is the Medicaid” 
 
The National Health Law program, a nonprofit health law center that focuses on the health rights of low-income and underserved populations, has submitted civil rights complaints to Colorado and Texas and Washington, D. C. for disability discrimination. 
 
In Florida a class action lawsuit alleges that the unwinding processes are not just messy but unlawful. In their complaints, plaintiffs state that the state of Florida violated the constitutional rights of tens of thousands of residents in the state abruptly ending coverage “without adequate notice” and with “little or no explanation of the actual reason. ” 
 
Of the 1. 9 million people in Florida erased from Medicaid rolls as per KFF, it is still under thousand of disabled individuals as the patient advocates suggest that cases like Eakin’s. 
 
Its’ unfortunate for her that the state sent her several digital notices requesting her to provide additional data which she could not read as she is legally blind. She never received the notices which would have been useful to her care coordinators who could have assisted her complete the forms before it was too late as her team explained to me. 
 
“It is terribly designed for the people with vision impairments and the disabled, actually,” Eakin added. “Especially when you don’t have knowledge in computing and that is the way that you are being informed. ” 
 
Paul, 57 years old, from Dunedin, Florida, suffers from an intellectual disability, pacemaker and seizure disorder said that his Medicaid was terminated in March. Paul requested that his last name not be used for this article because he is still living in the state and fears he may be prosecuted for his theft. 
 
The only communication he received from the state: a renewal notice for his Medicaid in November that told them he was approved for a year, Paul told me and his care team. 
 
His personal care in a group home and staff required for day activities were all turned off, and apparently every cent was denied him until his coverage resumed late August. The state failed to provide any justification during the lapse, Paul added. 
 
To one extent the pressure built up to a level, where Paul once had to be admitted in the hospital; due to a panic attack. 
 
The time Fredrick suggested moving out on his own must have been what that was, as Paul later said, “That was the worst thing I ever had. ” “I thought I was going to end up alone, as if I was going to lose everyone, basically everything. ” 
 
also reached out for comment to the Florida Department of Children and Families, which is responsible for determining for Medicaid eligibility in Florida, and the office of Governor Ron DeSantis. 
 
During a news conference on August 21, NBC News asked DeSantis why many of the people in Florida, who should remain on Medicaid, were losing it during the unwinding process. 
 
“I’m not sure that’s true,” DeSantis said. 
 
Then Shevaun Harris, the secretary of the state Department of Children and Families, joined in, adding, “That’s not factual. ” 
 
“We are to guarantee that any person who can have health insurance does it, “she further stated. 
 
It is, however, the disenrollments, which Mazaeda called “unprecedented,” and still happening. 
 
Currently, there is no organization keeping count of how many disabled Americans have been discharged from Medicaid across the country; however, the patient advocacy group Disability Rights Florida claims that thousands of disabled Floridians have undeservingly been expelled from the program. 
 
Only within her agency, Mazaeda’s clients saw their Medicaid expunged on September 1: 11 more of them. “This shows that 443 people with developmental disabilities have ever been disenrolled from Medicaid in this program and has never happened before in the over 30 years that I have been doing this. ” 
 
These are people who “already have so many challenges in their lives, so many worries and obstacles they endure,” she said. “Many of these patients have now been stripped of their Medicaid and this has become one more source of stress that could have been amended and should have been amended long ago. 
 
Meanwhile, Lauren Eakin’s Medicaid coverage was restored only in the last week, but her home and community-based provider was able to take roughly $14000 of personal loans in order to pay for the limited hours of caregiving that Eakin could receive per day during the coverage gap.

“My employees need their money,” Bryant said. “They can’t just sit here and wait for months without continuing to get paid You see, that’s pretty much what they left us to do. ” 
 
Whether the state will ber her for the services given in the period of the coverage is still an unknown factor. 
 
However she says, “I couldn’t walk away They would… what?”, “Drop her off at the hospital?” “Where would you drop her?” “That’s my question” “Would I just not show up and she just sits here?” 
 
Eakin also declares that she has realized that the system that is meant for her assisting to achieve the full potential of her life is not functional. 
 
“If it can happen to me, then it can happen to anybody,” she added.