Pennsylvania Blocks Federal Autism Data Sharing

By Rob Gorski | The Autism Dad | April 2026

TL;DR

• On April 16, 2026, Pennsylvania Gov. Josh Shapiro signed three executive orders protecting people with disabilities.
• One order bars the state from sharing disability data with the federal government — a direct response to the federal autism registry.
• Pennsylvania is the first state to formally refuse. Every other state should follow.

For the first time in a long time, someone in power actually stood up for our community. And it happened in Pennsylvania.

On April 16, 2026, Governor Josh Shapiro signed three executive orders to protect people with disabilities and autism. One of those orders directly blocks the state from sharing disability data with the federal government. This isn’t a press release. This isn’t a statement of support. This is a governor putting pen to paper and telling the federal government that Pennsylvania will not hand over the private data of its disabled residents.

If you’ve been following what’s been happening to the autism community at the federal level, you know why this matters. If you haven’t, let me catch you up.

The Autism Registry: A Quick Recap

In April 2025, NIH Director Jay Bhattacharya announced plans to build a national autism registry during an all-staff meeting. He described it as a “real-world data platform” that would pull data from pharmacies, insurance claims, electronic health records, Medicare and Medicaid data, and even wearable devices like smartwatches and fitness trackers.

The autism community was alarmed. The ACLU, the Autistic Self Advocacy Network, and over 80 other organizations sent a letter to HHS Secretary Robert F. Kennedy Jr. raising significant concerns about surveillance, stigmatization, and marginalization. They pointed out that disabled people have a long and documented history with governments that wanted to find and track them, and that it never ended well.

HHS tried to walk it back, claiming they weren’t creating an “autism registry” but rather a “real-world data platform.” But the database kept being built. NPR reported in May 2025 that NIH confirmed a partnership with the Centers for Medicare and Medicaid Services to use insurance claims data in the platform. Advocates remained deeply concerned, noting that the walkback was little more than a name change.

HHS even requested data directly from states. Pennsylvania was one of them.

What Governor Shapiro Just Did

Pennsylvania said no. And now it’s official.

On April 16, Governor Shapiro signed three executive orders that do the following:

Executive Order 1: Data Privacy Protections. This order limits data collection by Commonwealth agencies to the minimum data necessary and prohibits sharing disability data with the federal government unless required by law. This is a direct response to Kennedy’s autism registry plans. According to the Philadelphia Inquirer, Shapiro confirmed that HHS requested the data from Pennsylvania last year and the state did not comply. This order formalizes that refusal.

Executive Order 2: Governor’s Advisory Commission on People with Disabilities. This creates a new commission of up to 30 volunteer members, including individuals with disabilities, family members, and advocates, who will advise the governor directly on disability policy. As WHYY reported, this is the first time Pennsylvania has created an advisory commission specifically focused on people with disabilities.

Executive Order 3: Reestablishment of the Developmental Disabilities Council. This updates and reauthorizes the independently operated council that advises the governor on issues affecting people with developmental disabilities, including creating a statewide plan for improving support systems and services.

Why This Matters

Governor Shapiro didn’t mince words about why he took these actions. At the news conference, he said that the federal government openly disregards, disrespects, and mocks people with disabilities, and that Pennsylvania is different.

According to WESA, Shapiro directed state agencies to “go above and beyond” federal standards for barring discrimination and making accommodations for people with disabilities.

But perhaps the most powerful moment of the signing came from Tom Bak, a 26-year-old autistic musician who graduated from West Chester University last year. According to the Philadelphia Inquirer, Bak told the audience that he worries about being openly autistic in these times. He said the executive order matters because it gives autistic people a voice in protecting their data privacy and autonomy.

> A 26-year-old autistic man told the governor of Pennsylvania that he’s scared. And the governor listened. And he acted.

That’s what leadership looks like.

The Bigger Picture

This isn’t just about Pennsylvania. This is about what’s happening to the autism and disability community across the country.

Autism research has been cut by 26%. The IACC, the federal panel responsible for directing nearly $2 billion in autism funding, canceled its first meeting in over a year with no explanation. Families in Alabama had therapy services ripped away overnight. Medicaid is being gutted. SNAP is being slashed. Disability programs are being flagged as DEI and targeted for cuts.

And underneath all of that, the federal government is building a database to track autistic people using their most private health data, without transparency, without community input, and without meaningful safeguards.

Pennsylvania just drew a line in the sand. The question now is whether other states will follow.

What You Can Do

1. If you live in Pennsylvania, thank Governor Shapiro. Let him know that autism families see what he did and it matters. 2. If you don’t live in Pennsylvania, contact your governor’s office and ask them what they’re doing to protect the disability data of their residents. Ask them whether they’ve been asked to share data with the federal government. Ask them what their answer was. 3. Find your governor: National Governors Association 4. Share this post. Tag your governor on social media. And demand the same protection for autistic people in your state.

Because right now, Pennsylvania is leading. And the rest of the country needs to catch up.

This is what Autism Action Month looks like. Not just awareness. Not just acceptance. Action.

Stay in the Fight

The autism community needs people who won’t look away. If this post moved you, here’s how to keep going:

• Share it. Tag your governor. Tag your representatives. Make them answer the same question Pennsylvania just answered.
• Get posts like this in your inbox. Subscribe to the newsletter so you never miss what’s happening to our community.
• Follow along. YouTube · Instagram · Facebook

Pennsylvania drew the line. We need every state to hold it.

Sources

Rob Gorski is the founder of The Autism Dad, a platform dedicated to supporting autism families since 2009. He’s a single dad to three autistic sons and has been featured on CNN, ABC, and BBC. His book, “So Your Child Has Just Been Diagnosed with Autism,” will be published by Quarto in early 2027.