Each week, we showcase a picture of real life from the Medical Motherhood community. If you’d like to participate, simply reply to this email with your photo. What do you want people to know about the #medicalmom life?
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From the Miami Herald: “In blistering order, judge tells Florida to stop blocking effort to aid medically frail kids”
The battle of wills between Florida health administrators and a federal court judge intensified Tuesday as U.S. District Judge Donald M. Middlebrooks accused the state of obstructing his efforts to free medically fragile children from segregated institutions, where many have spent their entire lives.
Late last week, the Florida Agency for Health Care Administration asked Middlebrooks to stay an injunction he signed a week earlier requiring the state to reform its system of care for 2,750 children with medical complexities. The linchpin of Middlebrooks’ plan is a requirement that the state ensure such children receive at least 90% of the at-home nursing care prescribed by their doctors.
The injunction capped a two-week trial in May — and a 12-year litigation Middlebrooks repeatedly has castigated as shameful — over claims by the U.S. Justice Department that Florida is violating the Americans with Disabilities Act by steering severely disabled children into nursing homes. Virtually all of the youngsters, Middlebrooks wrote, could be safely cared for at home with sufficient help from the state.[…]
But Florida health regulators instead have left families with little choice but to leave their children in institutions by making it extremely difficult for parents to access adequate private-duty nursing, Middlebrooks wrote.
A total of 2,750 children in Florida require constant nursing care, Middlebrooks wrote, and parents have complained bitterly for years that low reimbursement rates under Medicaid, the state’s insurer of last resort for impoverished and disabled Floridians, have made in-home care difficult to access.
[…Florida health agency] lawyers said it would be “impossible” for the state to comply with Middlebrooks’ injunction. And doing so, the state said, would force health administrators to redirect scarce health dollars from other deserving groups.
“Beyond the shadow of a doubt, the state will violate the injunction through no fault of its own, and despite its best efforts, because the provision of 90% of [private-duty nursing] hours to 2,750 children in the midst of a nursing shortage is simply impossible.” the state argued.
[…]“These children deserve better, as do those whose taxes are already paying for these services,” Middlebrooks wrote of the medically complex children at the center of the current litigation. “I caution the state against foot-dragging in complying with the injunction. This issue is too important. And for the families involved, the stakes are too high.”
As to the argument that it lacks money to provide 90% of the nursing care doctors order, Middlebrooks reminded the state that it is already paying its managed-care organizations to deliver 100% of what doctors prescribe — a contractual requirement the state has never enforced. […]
• From Disability Scoop: “Ed Department Tells States To Step Up IDEA Compliance”
Citing a pattern of failures, federal education officials are issuing new guidance pressuring states to improve their oversight of special education programs.
The 45-page document released this week by the U.S. Department of Education outlines steps that states should take to enhance their monitoring of IDEA and ensure compliance in school districts and early intervention programs.
Specifically, it indicates that states should monitor every school district and early intervention program at least once every six years and states “may not ignore credible allegations about potential noncompliance” even if they come outside of the regular visit cycle. In cases where a program is not compliant, states must issue such a finding in a timely manner, generally within three months, and they must ensure that the issue is corrected for each individual child, the guidance states.
[…]The Education Department said that it issued the guidance in response to “multiple requests from a diverse group of stakeholders for updated and consolidated guidance interpreting the general supervision requirements of states” under IDEA.
The information comes less than a month after the Education Department released its annual IDEA determination letters. The federal agency is required to evaluate each state’s performance under the law annually. For the 2021-2022 school year, just 22 states met requirements for providing special education to students with disabilities ages 3 to 21.[…]
• From The Texas Tribune: ““Scared out of my mind”: A family scrambles after their disabled 3-year-old loses Medicaid”
“Parents of medically complex children can’t afford for emotion to take over,” [mom Jodi] Whites, of New Braunfels, said. “You get into the parking lot of the ER, you wipe your tears, you get your kid and you go. You can have your breakdowns once the doctors have seen them.”
But her daughter Amelia can’t see her doctors anymore. She can’t undergo scheduled brain tests because the Medicaid coverage that provided access to all her treatment — for her six congenital heart defects, her cerebral palsy and her autism — was revoked.
Amelia is one of half a million Texans booted from Medicaid — the federal health insurance program for low-income individuals — after three years of continuous coverage during the pandemic, when federal regulations prohibited moving anyone off of the rolls. Around 5 million Texans rely on Medicaid, which mainly provides health coverage for children, but some adults with disabilities and pregnant women can also receive benefits from it.
The state intended to remove people who are now ineligible, including children who turned 18, aging them out of qualifying, and women months out of their pregnancies. But many eligible Texans have also lost coverage for reasons including procedural errors like not sending in renewal applications on time, jeopardizing their ability to access consistent care.
But according to a letter addressed this week to the executive commissioner of the state agency that manages Medicaid for Texans, the Texas Health and Human Services Commission, approximately 80,000 eligible people have “lost coverage erroneously.” The letter, obtained by The Texas Tribune, was written by HHSC employees who did not name themselves, signing off only as “Concerned Texans and Dedicated Employees.”
[…]Jodi Whites said she had believed Amelia’s coverage would continue. She said she didn’t receive any communication from the state that her renewal application was denied until two weeks before she lost coverage.
“As soon as I saw that denial, I could not breathe. I could not think. I was scared out of my mind,” she said, “because I know what a loss of coverage for Amelia means.”
[…]Medicaid covered more than [nursing] services for Amelia. It also provided regular supplies for her gastrostomy tube and oxygen, which she needed when she couldn’t breathe. A company working with Medicaid removed the supplies for providing oxygen on Thursday from the Whites’ home.
For her gastrostomy tube, Amelia needs access to syringes, special pump bags and formula. Whites paid out of pocket for a set of syringes once, but it was too expensive, and since then she’s been outsourcing to Facebook to reach families of children with similar needs. Some parents from other states have shipped her their leftover supplies. Others have asked her to pick them up, leading Whites to drive hours to different parts of the state to keep Amelia going.
“We learn to take care of one another as medically complex parents because we can’t always depend on the state for services,” Whites said. “We take care of each other and our kids.”
[…]Amelia qualifies for a Medicaid waiver program that guarantees coverage, but she’s one of 6,012 people on a waiting list, her mother said.
[…]State Rep. John Bucy III, an Austin Democrat on the House Select Committee on Health Care Reform, said his office has heard the “unwinding” has not gone well for many bureaucratic reasons that should be fixable. He said the systems used to manage Medicaid eligibility should be modernized.
“There’s no other way to say it: We’re in a crisis,” Bucy said. “This is terrible for Texans. But we’re coming back and this should not wait for the next session for the Legislature to act. This has to be dealt with now.” […]
Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!
Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.
Florida Court Battle Continues; Ed Department Pushes States on IDEA; Medicaid 'Unwinding' Leaves Kids, Families Struggling