Supreme Court decision makes it easier to sue schools for disability discrimination
Plus: Could tariffs lead to rationing of medical items? And what makes families of disabled kids more likely to skip important health care appointments?
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From NPR: “Unanimous Supreme Court makes it easier to sue schools in disability cases”
The Supreme Court on Thursday made it easier for students with disabilities to sue to enforce their rights under the Americans with Disabilities Act and other laws enacted to ensure that disabled children get appropriate schooling.
Writing for a unanimous court, Chief Justice John Roberts said that while Thursday's decision may be narrow, that does not diminish its importance for a great many children with disabilities—children who face "daunting challenges on a daily basis."
"We hold today," he said, "that those challenges do not include having to satisfy a more stringent standard of proof than other plaintiffs" in discrimination cases.
At the center of the opinion was Ava Tharpe, a teenage girl who suffers from serious disabilities caused by a rare form of epilepsy. She has so many seizures, mostly in the morning hours, that her public school in Kentucky arranged her schedule to be in the afternoon only, including a teacher who gave her instruction at home in the early evening.
But when the Tharpe family moved to Minnesota for her father's job, her new school in the Twin Cities refused to accommodate her late-day schedule, so Ava was only getting two thirds of the instructional time in school that other kids were getting.
[…]the language of the court's opinion strongly suggested that Congress has already made its view clear in the text of the statute by linking federal funding to specific protections for children with disabilities. Indeed, as Chief Justice Roberts observed, Congress at one point even amended the Individuals with Disabilities in Education Act to overturn a Supreme Court decision that had failed to interpret the statute in the expansive way Congress intended. […]
• From California Health Report: “Analysis: Tariffs Threaten the Survival of Medically Fragile Children Like my Son”
When I heard the news about President Trump imposing tariffs on almost everything that isn’t made in the U.S., the first thing I did was check the packaging on my son’s medical supplies.
[…]When my son’s medical supplies are delivered every month, the best way I’ve found to keep track of what supplies we have and what we might be missing is to spread everything out on the floor and take stock before putting things away.
With the threat of tariffs looming, I decided to look at every item in my son’s most recent supply order to try to understand how they might be affected. The plastic tubes and connectors for his ventilator are made in Mexico, China and Indonesia. His feeding tubes are made in Malaysia. The syringes we use to feed him are made in Denmark. His tracheostomy tubes are made in Mexico. The plastic nebulizers that we use to give him breathing medications are made in Germany. Only one item (a tiny plastic speaking valve) is made in the United States. It doesn’t just take a village to keep my son healthy, it takes the entire world economy.
[…]When the cost of supplies goes up but the rate that companies get reimbursed by insurance stays the same, the result is rationing. I suspect this will happen in response to the tariff price increases because it happened during COVID — when supplies got more expensive, kids with medically complex conditions had to make do with less.
[…]The solution at the federal level is simple: Don’t put tariffs on medical supplies. Our representatives in Congress can put pressure on the administration to stop these destructive policies.
Meanwhile, there are no easy solutions for families like mine that are facing this situation. If I can give any advice, it would be to stay organized and keep track of what supplies you have on hand. It helps to be a little bit of a hoarder, especially if supplies become scarcer. Talk to your child’s doctors if your medical supply company won’t send you things that your child has been prescribed, because they may be able to intervene on your behalf.[…]
• From MedScape: “Why Children With Disabilities Are Skipping Vital Medical Visits”
Children with disabilities who face disability-based discrimination at doctors’ appointments are more than twice as likely to forgo care later on, according to a new study published in Pediatrics.
[…]Disability-based discrimination is not always obvious to the doctors treating patients, and these experiences are much less studied in pediatrics than in adult care.
“Families can recognize it because they feel that mistrust, but it can be hard for providers to recognize,” [lead author Dr. Stefanie] Ames said.
[…]More than twice as many families who experienced discrimination had decided to not seek out care in the past year compared with those who did not (aOR, 2.13). Those who said disabilities had affected their daily lives were three times as likely to have skipped appointments (aOR, 2.94).
Clinicians need to understand the barriers families may be facing on top of having a child with a disability, said Veronica Pollack, MSN, MSW, former clinical nurse specialist and former care coordinator at Lurie Children’s Hospital in Chicago, who co-wrote a commentary about the research.
“One of the things I’ve seen happen is people getting kicked out of clinics or fired by providers because of no-shows,” Pollack said. Clinic staff “might not understand why the no-shows are happening. There may be limitations on transportation, getting time off work, or getting childcare for other children and sometimes other family members.”
[…]Pollack said clinicians should involve families and children in shared decision-making, asking what their biggest needs are, rather than making assumptions.[…]
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Good newsletter!