Lauren Eakin has cerebral palsy, is legally blind, and is confined to a wheelchair. Eakin, 34, lived in her own apartment for years with the assistance of caretakers who helped her with almost everything. When the state of Florida cancelled her basic Medicaid coverage this summer, she lost a lot of her relative independence.
“I will always be in need of assistance,” she declared. “I need help almost 24/7 with getting up, eating, making meals, and going out in the community,” she remarked.
Eakin’s Medicaid-funded care team also enables her to lead a somewhat typical life, which includes travel for her community outreach work and baseball club games.
Eakin didn’t realize she had lost her Medicaid coverage until her caretakers’ payments ceased in June. They thus drastically cut back on their hours. For more than a month, Eakin was left alone at night, unable to leave the flat in case of need or get out of bed to use the restroom.
It was utter terror. Since I’m wondering, “What the heck happened?” stated Eakin.
States were obligated to continue covering Medicaid applicants for medical expenses throughout the epidemic, even if they were no longer eligible. The Covid public health emergency ended last year, and program eligibility requirements were reinstituted.
Medicaid is the government-sponsored health insurance program for those with low incomes or impairments. A countrywide reevaluation of eligibility for participants went horribly wrong in places like Florida.
The health policy group KFF claims that during what has been referred to as the “unwinding” of Medicaid, nearly 25 million Americans have lost their coverage. A little over 70% of people who were dropped had their coverage revoked due to formalities like incomplete paperwork, however some may no longer be eligible for other reasons like a pay raise.
abruptly stopped
According to Melissa Mazaeda, vice president of care coordinator J&M Support Coordination in Florida, individuals with developmental disabilities have been most affected by procedural errors since they frequently need additional help to finish the renewal process. Disability advocates claim that far too many people with Medicaid were dropped unexpectedly, placed in the incorrect categories, and did not receive timely assistance upon disenrollment.
According to Mazaeda, states never ought to have denied Medicaid to people with developmental disabilities in the first place.
“They will never be able to live without Medicaid. Down syndrome never goes away. It is not possible to treat cerebral palsy. Autism and spina bifida don’t get better, Mazaeda stated. “They will need assistance for the rest of their lives. And Medicaid is the cornerstone of that.
A charity that defends the health rights of underprivileged and low-income people, the National Health Law program, has filed civil rights cases in Colorado, Texas, and Washington, D.C., alleging discrimination against those with disabilities.
A class action complaint in Florida claims that the state’s unwinding procedure was not only careless but also unlawful. Plaintiffs claim that by terminating coverage “without adequate notice” and “with little or no explanation of the actual reason,” the state violated the constitutional rights of tens of thousands of Floridians.
According to KFF, 1.9 million Florida residents lost their Medicaid coverage; patient activists believe that thousands of handicapped individuals, including Eakin, have been impacted.
In her case, the state sent her many digital notices requesting further details, but due to her legal blindness, she was unable to see them. Her care team claims that the notices were not given to her care coordinators, who might have assisted her with the paperwork before it was too late.
According to Eakin, “their process is really bad for people who are disabled and have vision impairments.” “Especially since it’s the only way you can receive notifications and you lack computer skills.”
Paul, 57, of Dunedin, Florida, claims that his Medicaid coverage was terminated in March. Paul has an intellectual handicap, a pacemaker, and a seizure disease. Paul requested that his surname be suppressed because he was afraid state officials would take revenge.
According to Paul and his care team, the only correspondence he ever received from the state was a Medicaid renewal notification in November of last year, which indicated he was accepted for a year.
Until the end of August, when his coverage was restored, all funds for his daycare and care in a group home were stopped. Paul claimed the state gave no justification for the lapse.
Paul was once sent to the emergency hospital for a panic attack because the tension had been too much for him.
Paul remarked, “That was the worst thing I ever had.” “I was afraid I would lose everything and everyone.”
Officials from Gov. Ron DeSantis’s office and the Department of Children and Families, which determines Medicaid eligibility in Florida, were contacted by NBC News on many occasions for comments.
NBC News questioned DeSantis at a press conference on August 21 about why a large number of Floridians who ought to be on Medicaid were losing coverage as a result of the unwinding.
“Is that accurate?” DeSantis questioned.
Shevaun Harris, the secretary of the state’s Department of Children and Families, intervened next, stating, “That’s not factual.”
She said, “We’re committed to making sure that anyone who is eligible maintains coverage.”
However, Mazaeda stated that the disenrollments have been “unprecedented” and continuing.
Although patient activists believe that thousands of handicapped individuals in Florida have unjustly lost their Medicaid coverage, no organization keeps count of the number of persons with disabilities who have had their coverage terminated nationwide.
Eleven more of Mazaeda’s customers lost their Medicaid coverage on September 1st, just inside her agency. “In the more than 30 years that I have been doing this, there has never been this number of people with developmental disabilities on this program being disenrolled from Medicaid.”
“They already have so many problems in their lives, so many anxieties and difficulties they face,” the speaker stated of these individuals. “Removing them from Medicaid has put them through additional stress that could have been avoided and ought to have been addressed by now.”
A personal loan of almost $14,000 was required by Lauren Eakin’s home and community-based caregiver, Kimberly Bryant, to fund the few hours of care that Eakin got each day during the gap before her Medicaid coverage was reinstated during the past week.
Bryant declared, “My employees need their money.” “They can’t just wait around for months on end without getting paid. And that is essentially what they left us to take care of.
It’s uncertain if she will receive reimbursement from the state for the services rendered during the coverage lapse.
She continues, “I couldn’t walk away.” What would they do? Leave her at the medical facility? In what location would you drop her off? That is the query I have. Would she just sit here if I simply didn’t show up?
According to Eakin, she no longer has trust in the system that is meant to enable her to fully enjoy life.
She remarked, “If it can happen to me, it can happen to anybody.”
