What It Takes to Keep Disabled Kids in Their Communities
From summer camp to the classroom to home, this week’s stories examine what makes community life possible — and what happens when support systems disappear.
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From USA Today: “Inside the summer camp that functions like a pediatric hospital”
[…]For most of the year, campers’ schedules revolve around doctors’ appointments, surgeries and medical precautions. Some attend specialized schools or rely on full-time aides. Others have spent months in isolation because weakened immune systems make typical childhood activities dangerous.
But at camp, the word “no” is seldom heard. Paraplegic campers fly down ziplines. Children who use wheelchairs scale rock walls. For parents accustomed to constant caution, experiences like these once seemed impossible.
Each summer, roughly 450 campers attend one of four sessions at Camp Simcha [in New York’s Catskills mountains…]
• From Stateline: “As federal protections fade, disabled Americans fear a return to institutions”
Editor’s note: Jeneva and Rob Stone are state chapter co-leads of Little Lobbyists Maryland. I am one of the state chapter co-leads of Little Lobbyists Oregon.
[…] Jeneva Stone says the cuts in Maryland threaten her son’s ability to get the nursing and other services he needs to be able to live at home. She worries families like hers will be the first to face forced institutionalization.
“More and more burden falls on family caregivers to fill in the gaps, and that leads to unsustainable economic situations for families,” she said. “Once your job situation falls apart, your savings are gone, you’re faced with this ugly choice: I believe strongly in my son’s civil right to stay in his community, but I can’t keep a roof over his head.”
Everything feels uncertain, she said, as longstanding protections seem to be dissolving for her son and others like him.[…]
• From The New York Times: “The U.S. Relies on Family Caregivers. Millions of Them Are Kids.”
[…]A 2024 study in Rhode Island found that about 14 percent of the state’s students reported that their absences from school were because they had to look after someone. Nationally, teen caregivers are about 8 percentage points less likely to be enrolled in school at all.
Those caregiving students who remain in school tend to be less engaged and spend about 45 fewer minutes per day on educational activities; not surprisingly, they get worse grades. Caregiving youth also grow up to be adults with lower levels of education, even after controlling for socioeconomic status and other demographics.
Yet in many schools, no one is trained to identify caregiving as something that can add significant stress to a student’s life.[…]
• From Dayton Daily News: “More Ohio students have a disability: Schools, families face challenges”
The number of Ohio students with a disability is rising compared to before the pandemic, according to Ohio Department of Education and Workforce data analyzed by the Dayton Daily News.
This is creating financial challenges for districts and headaches for parents and children who have not received needed care, our reporting found.
[…]Dan Dyer, a Kettering resident whose daughter, Lou, has cerebral palsy, said Lou likely would not have survived if she’d been born just a few years earlier.
“There’s an ignorant comment of, ‘we didn’t have as many disabled kids when I was in school,’” Dyer said, noting that previously these kids would have been institutionalized.[…]
• From Fox 21 News (Colorado): “D49 faces lawsuit from disabled student’s family”
A local family filed lawsuits in state and federal court against El Paso County School District 49, alleging the district refuses to allow their 8-year-old son’s private nurse to accompany him to class. The family seeks a court order to permit the nurse, who is funded through Medicaid, to support the student’s severe medical needs during school hours.
[…Attorney Igor] Raykin, who has represented disabled children for nearly 15 years, said he has never seen a district refuse entry to a nurse paid for by external sources. “Literally all we are asking them to do is let somebody in the door,” Raykin said.[…]
• From The Free Press (Canada): “Meeting the needs of disabled Indigenous children”
[…]Many First Nations families, particularly in remote and northern communities, are faced with the choice of living in their home community with limited or no resources for their child with a disability or relocating to an urban centre to access necessary supports. This further disconnects families from family and community support, connectedness to shared values and teachings and a child’s right to a sense of belonging.[…]
• From Stateline via Nisqually Valley News: “Many states expanded care for children, older adults and workers”
Many states have made marked progress over the past two years in extending crucial care and benefits to children, workers and aging adults. But they will be hard-pressed to fill the void left by impending federal cuts to social services, according to a new analysis.
[…]It gave top grades to California, Oregon, New York, Massachusetts and New Jersey. The lowest rankings went to Alabama, Mississippi, Wyoming, Florida and North Carolina.[…]
• From RNZ (New Zealand): “Proposed disability support bill criticised as child poverty report highlights growing hardship”
An advocate for children with disabilities says families are skipping food to pay for essential items.
A Ministry of Social Development report revealed that child poverty is getting worse and that an estimated 210,600 children - roughly the population of Wellington City - were living in households below the poverty line.
[…]“In the past two Budgets this Government has already committed a record investment of $2.1 billion of additional funding into the disability support system.”
[Ministry of Social Development officials] were not aware of cases of people sacrificing food to fund care.[…]
• From The Star (Malaysia): “Autism care in critical need of support”
One in every nine persons with disabilities (OKU) recorded with the Social Welfare Department has autism, with the number of registered cases swelling by 17,000 in the past year.
Despite these rising numbers, Malaysia’s autism care remains under strain with a long wait for therapy and a shortage of trained professionals.[…]
• From The Dispatch: “Why Some Americans Want to Be Disabled”
[…]Disability has gone mainstream. There are disabled influencers who now command audiences of millions. […] More than anything, I appreciate how this content—which focuses on everything from accessibility issues to advocacy to the latest in assistive technology—has shifted the Overton window on disability’s presence in mainstream discourse, a welcome counterweight to TV and films that have woefully underrepresented disabled people.
[…]Personally, I don’t think it’s a coincidence that this is a relatively recent development. Social media has gifted us the ability to create our own à la carte realities. A lifetime of exposure to advertising campaigns and celebrity culture has effectively turned us into our own marketing departments, has conditioned us to internalize the idea that if we’re efficient enough, if we can optimize ourselves with the right metrics—likes, shares, views—if we can differentiate ourselves with some rarefied novelty characteristic that sets us apart in the digital panopticon, we too can cultivate our own “authentic” brands in the open marketplace of ideas. Societies built on manufacturing tended to exploit their workers. But in a postindustrial world, we increasingly exploit ourselves.
I wish I had the luxury of pretending to be disabled. Thankfully, my disability doesn’t define me, and that means any setbacks I’ve faced aren’t cheat codes for a personality. Adopting victimhood status as a personal branding campaign will never solve whatever underlying feelings of inadequacy or insecurity someone might have. Worse, commodifying disability trivializes disability, which doesn’t make the world an easier place for those of us who already have a hard time navigating it.[…]
Medical Motherhood brings you independent, ad-free news and information each Sunday for raising disabled and neurodivergent children.
Free subscribers help this work reach more families. Paid subscribers make it sustainable. Get the newsletter in your inbox, give a gift subscription or become a paid supporter to help keep this resource available to everyone.
Not ready for a subscription but like what you read here? You can also buy me a coffee.
Follow Medical Motherhood on Facebook, Bluesky, X, TikTok, Instagram or Pinterest. Visit the Medical Motherhood merchandise store.