What Happens After Families Speak Up
From a viral school video in Wisconsin to Medicaid caps and guardianship reform, this week’s stories show where parents are fighting back against access restrictions — and how systems respond
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From Milwaukee Journal Sentinel: “Wisconsin mother fights school, police over TikTok of disabled child”
A Wisconsin mother is pushing back after police visited her home and school officials threatened a defamation lawsuit over a viral TikTok video showing her daughter’s experience at a Pittsville School District event.
The video, posted to TikTok Dec. 17, shows Amanda Vogel’s daughter, who uses a wheelchair, seated off to the side during a school concert as students stand together in risers nearby. Vogel’s daughter was in 4-year-old kindergarten at the time the video was recorded in 2023.
"This was the moment we decided to homeschool," reads text edited onto the video, which has racked up 11.6 million views as of Jan. 16. "Watching her be placed off to the side while her peers stood together, and realizing no one noticed before the concert, was it for us," Vogel added in the caption.
In a letter to Vogel Dec. 19, the law firm representing the Pittsville School District said that her video was "harassing and defamatory" as well as included the faces of staff members and "sufficient information" to identify the family as residents of Pittsville, a rural community about 130 miles west of Green Bay.
[…]"Police should not be showing up at people's homes for things they post on social media, especially when they aren't threatening," Brewer said in an interview. "It's really inappropriate for government entities, whether it's a school district or law enforcement, to intimidate individuals into not speaking."
[…Pittsville School District Administrator Jason] Knott said the district "vehemently disagrees with many of the statements and allegations presented online and in news reports" about the situation.[…]
• From Idaho Statesman: “Idaho changes rules on therapy. What will it mean for kids with disabilities?”
In 2020, Evan Kates was struck with a devastating brain aneurysm. It came out of nowhere, and left him with a severe seizure disorder and profound developmental disabilities. Evan, then 5, was left reliant on a feeding tube, and doctors told his family he would probably never talk again.
But years of physical, occupational and speech therapy have made a huge difference, his mother, Brooke Kates, told the Idaho Statesman. Evan has been able to re-learn how to eat solid foods and how to speak in sentences.
“We know a full recovery is not something that’s going to happen, but the goal is always progress where it’s possible,” Kates said during one of Evan’s appointments on Wednesday. Therapists fitted him for a wheelchair that day that would allow him to switch between sitting and standing positions to develop more muscle tone in his legs.
Such progress relies on the Boise family’s ability to access and afford multiple therapy appointments each week. Evan even spent part of his 11th birthday, on Tuesday, at a therapy appointment, Kates said.
These days, Kates worries her son’s access to such care could be in jeopardy. In early January, she, other parents and care providers were caught off-guard by an announcement that the Department of Health and Welfare had started to place caps on the number of therapy appointments it would allow Medicaid to cover. Patients and providers will still be able to request appointments beyond those caps, but they must receive prior authorization from the department.
[…]Families in Idaho who qualify for Medicaid will be limited to 20 sessions each of occupational, speech and physical therapy per year unless their providers get prior authorization from Health and Welfare to offer more sessions, according to the department’s Jan. 8 announcement. Providers and advocates told the Statesman that this will add more paperwork and red tape to the process and risks further clogging up a system that is already dealing with cuts.
[…]Providers and disability advocates worry that the added burden could force providers to limit the number of Medicaid patients they’ll accept. The families that spoke to the Statesman all said their children needed far more than 20 therapy sessions per year to progress.
“It’s going to strain an already-strained system,” [Josh Wilde, a pediatric occupational therapist in Idaho Falls] said. “Imagine having a child with severe special needs and not being able to get the help you need.”[…]
• From The Den: “New program expands early autism diagnosis for children in rural Georgia”
Children in rural Georgia now have earlier access to autism diagnosis, which is an important step that can change the trajectory of a child’s life.
With assistance from the state, the Mercer University School of Medicine Early Autism Detection Program is expanding access to timely, evidence-based autism evaluations for families in rural communities, bringing high-quality care closer to home.
[…]For many children, autism is not officially diagnosed until they reach school age. By then, opportunities for early intervention may have been missed. Research shows that when autism is identified before age 3, children can make meaningful gains in communication, learning and social development that can shape their long-term outcomes.
[…]At the center of this effort is the EarliPoint™ Evaluation, an innovative diagnostic tool designed for children between 16 months and 30 months of age. Using eye-tracking technology and biomarker-based measurements, EarliPoint evaluates a child’s looking behavior to provide objective data that supports early, accurate autism diagnosis.
[…]Until now, families in rural areas often faced long waitlists or had to travel far from home to pursue evaluation.
“Making this diagnostic tool available locally really changes access to care for families in rural communities,” said Krista Kelly with the Babies Can’t Wait program in Dublin. “There was nothing here before. Having this test available lets families know their fears and concerns are seen.”[…]
• From Advertiser-News: “New law eases guardianship process for parents of disabled children”
When Lee-Ellen Pisauro of Sandyston marked her son Sam’s 18th birthday on Dec. 22, 2021, it was not a celebration but the start of a legal struggle that left her unable to make medical and care decisions for her child with Down syndrome.
Under previous New Jersey law, parental authority ended when a child turned 18, even if the child required daily support and advocacy. Although Sam’s needs did not change overnight, Pisauro was required to navigate a lengthy guardianship process before she could resume decision-making on his behalf.
“Professionally, I had peripherally supported families through the guardianship process; however, it was not until I navigated it personally as a parent and presumptive guardian that I experienced the unintended consequences of the procedural timelines embedded in the prior law,” Pisauro said.
[…]“Sam was without a guardian until March 22, 2022,” she said. “During that period, my husband and I were unable to manage some of his health care needs, access his medical benefits, or obtain documentation for time-sensitive diagnostic testing.”
[…Assemblyman Michael] Inganamort sponsored legislation allowing parents of children with developmental disabilities to apply for guardianship up to 180 days before their child turns 18. The bill, was recently signed into law.
“Parents like Lee-Ellen who have children with medically complex needs or require everyday decision-making assistance are some of the most selfless and tireless advocates I have ever had the pleasure to serve,” said Inganamort, R-Morris. “They shouldn’t have to battle a legal system to ensure their child remains protected.”[…]
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Another good weekly issue!