On April 15, 2026, Pennsylvania Governor Josh Shapiro signed three executive orders strengthening protections for people with disabilities. The orders limit how state agencies collect and share disability data, create a new advisory commission with direct access to the governor, and reestablish the Developmental Disabilities Council to continue advocacy work across the state.

The timing isn't coincidental. The first executive order responds directly to federal requests for autism and disability data from states, requests Pennsylvania has refused to comply with and now codifies that refusal through state policy.

What Changed

The three executive orders address different aspects of disability rights and services in Pennsylvania.

Executive Order 1 reaffirms the state's nondiscrimination policy and places new limits on disability data collection. State agencies can only collect the minimum data necessary for their work. That data won't be shared with federal agencies "without legitimate need," according to Governor Shapiro's announcement. This directly responds to HHS Secretary Robert F. Kennedy Jr.'s efforts to build a federal autism database using state disability records.

Executive Order 2 creates the Governor's Advisory Commission on People with Disabilities. The commission will have up to 30 volunteer members appointed by the governor, including people with disabilities, family members, and experts in relevant fields. Members serve two-year terms. Shapiro said the commission would have direct access to him, creating a formal advocacy channel that didn't previously exist at this level.

Executive Order 3 reestablishes the Developmental Disabilities Council. The council fulfills Pennsylvania's obligations under the federal Developmental Disabilities Act, develops a statewide plan for disability services, and advocates for systemic change. The order ensures the council continues operating independently while advising the governor.

Why This Matters Now

Earlier this year, HHS announced plans to create a comprehensive autism data platform using Medicare and Medicaid records, according to reporting from NPR. The initiative raised immediate privacy concerns from disability rights organizations, including the ACLU and the Autistic Self Advocacy Network, which sent a letter to Secretary Kennedy outlining significant concerns about how the data would be used and protected.

Pennsylvania isn't alone in those concerns. WHYY reported that the state is adding privacy protections specifically in response to federal plans that raised alarm among the disability community about how sensitive medical information would be collected, stored, and used.

The executive orders don't just respond to current federal policy. They establish a framework that persists regardless of who holds federal office or what data collection efforts emerge in the future.

What This Means for Pennsylvania Families

If you're a Pennsylvania resident with a child or family member with a disability, these orders create specific protections that didn't exist before.

Your disability-related data held by state agencies is now subject to strict collection limits. Agencies can't gather more information than necessary for their immediate work. They can't share that data with federal agencies without demonstrating legitimate need, not just responding to broad federal requests.

You have a new formal advocacy channel through the Governor's Advisory Commission. When the commission is fully formed, it will include parents, people with disabilities, and experts who can bring concerns directly to the governor's office. That's different from contacting a state agency or filing a complaint through existing channels.

The Developmental Disabilities Council continues its work without interruption, maintaining Pennsylvania's compliance with federal law while advocating for state-level improvements. That means the planning and advocacy infrastructure families rely on remains intact.

What Families in Other States Can Do

Pennsylvania's executive orders offer a model for state-level action during a period of federal policy uncertainty.

If you live outside Pennsylvania and want similar protections in your state, start with your governor's office. Executive orders don't require legislative approval. A governor can implement data privacy limits, create advisory commissions, and reestablish or strengthen disability councils through executive action.

Contact your state's disability rights organizations to ask whether they're pursuing similar protections. Organizations like The Arc chapters, state Protection & Advocacy agencies, and autism advocacy groups often coordinate campaigns for state-level policy changes. They need to hear from families that this matters.

Look at what your state already has in place. Most states have some form of developmental disabilities council under the federal DD Act. Does yours have direct access to the governor? Does it have adequate funding and authority? Pennsylvania's order strengthens an existing structure. Your state might need the same.

If your state already collects disability data for services like Medicaid waiver programs or special education, ask how that data is protected and whether it can be shared with federal agencies without your consent. Those questions create the baseline for understanding what protections you're missing.

The Broader Context

Pennsylvania joins a small but growing number of states taking proactive steps to protect disability data from federal collection efforts. The executive orders don't prevent Pennsylvania from complying with legitimate federal data requests tied to specific programs or legal requirements. They prevent the state from handing over comprehensive disability records in response to broad federal initiatives like the autism database proposal. States receive federal funding for Medicaid, special education, and other disability services. Those programs come with reporting requirements. Pennsylvania's orders don't change that. They change how the state responds to data requests that go beyond program compliance.

The new advisory commission creates accountability. When families have direct access to the governor through a formal commission structure, disability policy decisions become more visible. That's the point.

What Happens Next

Governor Shapiro will appoint members to the new advisory commission in the coming months. The application process hasn't been announced yet, but the order specifies that members must include people with disabilities, family members, and experts in relevant fields.

The Developmental Disabilities Council continues operating under its reestablished mandate. Families already working with the council won't see disruption. The order ensures continuity and reinforces the council's independence.

The data privacy protections take effect immediately. State agencies are already operating under the new collection and sharing limits.

For families watching from other states, Pennsylvania's approach offers concrete steps that don't require years of legislative work. Executive orders can move quickly when a governor decides to act. The question is whether other governors will follow.