Pennsylvania Gov. Shapiro Defies Trump Admin With Executive Order Blocking Federal Autism Registry Data

In a bold act of resistance against the Trump administration's expanding data collection efforts, Pennsylvania Governor Josh Shapiro signed an executive order Wednesday that blocks any federal requests for personal information about individuals with autism.

The move comes as a direct response to Health and Human Services Secretary Robert F. Kennedy Jr.'s announcement in May 2025 that the National Institutes of Health would work with the Centers for Medicare and Medicaid Services to develop a controversial national autism registry.

Standing Against Federal Overreach

"All across the country, we've seen the consequences of federal overreach, and I know many of you are worried that the administration in Washington is trying to create a national database of people with disabilities," Shapiro declared during the signing ceremony. "We will not let them get ahold of your private personal information and the action I am taking today helps protect against them."

While Trump's administration hasn't yet sued for access to Pennsylvania's autism data, Shapiro pledged to fight any future attempts to obtain this sensitive information. This preemptive strike signals growing state-level resistance to federal data collection initiatives under the current administration.

The RFK Jr. Registry Controversy

Kennedy's proposed national autism registry has sparked intense debate since its announcement. While the Trump administration claims the effort aims to "identify the cause of autism," critics raise serious ethical and privacy concerns about creating a federal database of individuals with disabilities.

The registry proposal has particularly alarmed disability advocates who worry it could fuel existing misinformation about vaccines and autism – a connection that has been thoroughly debunked by scientific research but continues to persist in certain political circles.

Comprehensive Disability Rights Reform

Shapiro's autism data protection order was just one of three executive orders signed Wednesday as part of a broader initiative to strengthen Pennsylvania's support for individuals with disabilities. The comprehensive package demonstrates the governor's commitment to pushing back against federal policies he views as potentially harmful.

The second executive order establishes the Governor's Advisory Commission on People with Disabilities, which will be composed of individuals with intellectual and physical disabilities who will have "direct line to me and my senior staff" to influence policies affecting the disabled community.

The third order modernizes the decades-old Developmental Disabilities Council within the Department of Human Services, putting more Pennsylvanians with "actual lived experiences" in advisory roles.

Going Beyond Federal Requirements

Significantly, Shapiro's orders direct state agencies to exceed both state and federal accessibility requirements. As an example, he noted that despite the state Capitol being exempt from Americans with Disabilities Act requirements due to its historic status, Pennsylvania continues investing in accessibility improvements, including a new ADA-compliant elevator in the East Wing rotunda.

Bipartisan Progress on Disability Services

The governor highlighted his administration's track record on disability issues, noting that both Sheetz and Wawa convenience store chains have partnered with the state Office of Vocational Rehabilitation to provide jobs for disabled individuals – an initiative championed by First Lady Lori Shapiro.

State funding increases have also made significant progress reducing waiting lists for autism and intellectual disability services. The 2024-25 budget included $354.8 million in federal and state funding that cut the emergency waitlist by 31%, benefiting approximately 42,000 Pennsylvanians who receive home and community-based services.

Broader Implications for State-Federal Relations

Shapiro's defiant stance reflects broader tensions between Democratic-led states and the Trump administration over privacy rights and federal data collection. Sherri Landis, executive director of The ARC of Pennsylvania, praised the executive orders as ensuring "decisions are made with people with disabilities rather than about them."

This confrontation over autism registry data may foreshadow additional clashes between Pennsylvania and federal agencies as the Trump administration pursues expanded data collection initiatives across various vulnerable populations.

As the battle lines are drawn, Shapiro's executive orders position Pennsylvania as a sanctuary state for disability privacy rights, setting up what could become a significant legal and political showdown with the federal government over the limits of state versus federal authority in protecting citizens' personal information.