Weekly Edition - 5.13.25

Your Medicare claim could track your autism. AI fakes Down syndrome for profit. Virginia school failed to protect autistic student from violence. Met Gala stairs block disability inclusion. Major concerns emerge across privacy, safety, and accessibility.

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The Big Idea

This week’s featured story: a closer look at developments making waves in the I/DD community

📄 Your Insurance claim could track your autism. The National Institutes of Health announced Wednesday that it will use Medicare and Medicaid data to create a "real-world data platform" to study autism causes. This initiative, championed by HHS Secretary Robert F. Kennedy Jr., will analyze insurance claims, medical records, and even data from health-tracking devices like smartwatches. The program covers about 36% of Americans enrolled in these federal insurance programs, with plans to expand research into other chronic conditions.

For families in the I/DD community, this raises immediate concerns about privacy and how the data will be used. While NIH Director Jay Bhattacharya insists the system will comply with privacy laws, the announcement follows last month's controversy over plans for what critics called a "national autism registry." The autism community and privacy experts worry about how easily individuals could be identified through basic information like age, sex, and location. Helen Tager-Flusberg from Boston University's Center for Autism Research warns, "It is possible to identify a person based on knowledge about these characteristics."

The timing amplifies these concerns. Kennedy has repeatedly promoted debunked theories linking vaccines to autism and claimed autism is "preventable," promising to find its cause by September. Scientists emphasize there's likely no single cause for autism, and increased diagnoses stem from better screening rather than environmental factors. The autistic community fears this database could be misused, especially given Kennedy's history of promoting conspiracy theories about autism.

This development directly impacts every family receiving Medicare or Medicaid services. Your routine healthcare visits and insurance claims could contribute to research you may not support, conducted by officials who've spread misinformation about autism. The lack of clarity about data protection and usage rights means families must stay vigilant about their privacy rights and potential policy changes. If you would like to read more, check out the original article.

Moments That Matter

Celebrating the everyday victories, breakthrough achievements, and inspiring individuals

👗 Fashion's biggest night excludes wheelchair users. Wicked star Marissa Bode is challenging the Met Gala's exclusionary practices toward people with disabilities. The wheelchair-using actress posted a TikTok demanding authentic inclusion in fashion spaces, not just token opportunities. "Disabled people have been screaming for years to be included," she stated, calling for consistent representation beyond one-off diversity shoots. Her message targets industry power brokers who continue hosting events at inaccessible venues like the Met Museum, whose famous steps physically bar wheelchair users. Bode's advocacy builds on activist Hannah Diviney's 2024 open letter to Anna Wintour, which highlighted how these architectural barriers send a clear message that disabled people aren't welcome in fashion. The actress reminds viewers that disability affects everyone eventually, making accessibility a universal concern that demands immediate action from those with influence. If you would like to read more, check out the original article.

Across The Nation

From Capitol Hill to community centers: the national updates shaping our collective future

📸 Fake Down syndrome filters exploit disabilities for profit. Content creators are using AI filters to mimic Down syndrome characteristics in sexually explicit videos, directing followers to subscription platforms for paid content. The National Down Syndrome Society reports monitoring hundreds of accounts using these deceptive filters, with search terms like "Down syndrome beautiful girl" surging on social media. These creators rarely disclose their AI use, posting provocative captions while linking to OnlyFans and Telegram groups with thousands of members. Cambridge researcher Dr. Amy Gaeta warns this trend commodifies disability, allowing able-bodied creators to profit from fetishization without experiencing actual discrimination. Dr. Emily Springer calls it "a deeply troubling intersection of ableism, sexual exploitation and unethical AI use." This exploitation emerges as disability advocates fight stereotypes through campaigns like "Assume That I Can," while disabled women already face abuse rates twice the national average. If you would like to read more, check out the original article.

Community Catalyst

Local Innovation Worth Spreading: See how local changes are creating ripples of progress nationwide

🔒 Disabled kindergarteners could face isolation rooms again. Minnesota lawmakers want to reverse a ban protecting young children with disabilities from forced seclusion in schools. The Senate proposal would allow districts to lock kindergarten through third-grade students in isolation rooms with parental consent, directly impacting the 100% of secluded children who have disabilities according to state data. Legal Aid attorney Jessica Webster describes horrific scenes of panicked children screaming to escape closets and small rooms, with some soiling themselves in fear or self-harming for adult attention. Nearly three-quarters of Minnesota's school seclusions target children under age 10, despite research proving the practice doesn't improve behavior. Rep. Kim Hicks questions how legislators can claim to support disabled students while permitting six-year-olds to be "locked in a box," as the Education Department pushes to eliminate all seclusions by 2026. If you would like to read more, check out the original article.

🏫 School staff watched autistic child suffer months of torture. Four Amelia County Elementary School employees face a $6.4 million lawsuit for allegedly ignoring relentless attacks on a 10-year-old autistic student. Court documents reveal Jane Doe was stabbed with pencils, threatened with scissors, beaten with blocks and basketballs, and left with concussions while administrators made empty promises of protection. Despite the child's mother reporting over a dozen incidents and the school nurse documenting injuries, Principal Lisa Davis, Assistant Principal Andy Henderson, and teachers Katie Elder and Maria Stephens took no action to stop the abuse. The violence escalated until February 23, 2022, when substitute teacher Elder left Jane unsupervised with her tormentors, resulting in a brutal assault captured on surveillance video. The lawsuit describes how the vulnerable special needs student developed depression, anxiety, and suicidal thoughts during six months of unchecked bullying. Jane's family seeks justice through a June jury trial after two years of legal delays. If you would like to read more, check out the original article.