Article Summary –
Governor Josh Shapiro signed three executive orders on April 15 to enhance protections for Pennsylvanians with disabilities, including one to prevent state agencies from sharing personal disability data with the federal government without consent. The other two orders establish a Governor’s Advisory Commission on People with Disabilities and modernize the Developmental Disabilities Council, aiming to give people with disabilities more influence in policymaking. These measures come in response to concerns over federal plans to create a national autism database, which has sparked fear among individuals with autism and their families about data privacy and potential discrimination.
On April 15, Gov. Josh Shapiro signed three executive orders enhancing protections for people with disabilities in Pennsylvania. These include measures safeguarding individual health data from the Trump administration.
One executive order prevents state agencies from sharing autism or disability data with the federal government without meeting specific conditions, including individual consent. The other orders establish a Governor’s Advisory Commission on People with Disabilities and modernize the existing disabilities council.
“In our nation’s capital, we currently have leadership that disrespects people with disabilities,” Shapiro stated on April 15. “Here in Pennsylvania, we believe in treating all people with dignity and respect.”
Last year, U.S. Secretary of Health and Human Services Robert F. Kennedy Jr. announced plans to use Medicaid and Medicare data to create an autism database, sparking outrage among autism advocates. Concerns over privacy violations led parents to cancel autism screenings.
“RFK Jr.’s plans for a national autism registry lacked clear protections for privacy and civil rights,” said Erin Lopes, a Pennsylvania health worker. “We sought state protections due to vague federal policies.”
Tom Bak, an autistic Pennsylvanian, expressed his concerns about federal data collection. “Autism is a wide spectrum, and people deserve inclusion and support,” Bak said.
Shapiro’s executive orders were welcomed by disability advocates. The Governor’s Advisory Commission aims to ensure people with disabilities have a voice in policy decisions. The orders also revise the Developmental Disabilities Council, increasing representation from those directly impacted.
Sherri Landis, CEO of The Arc of Pennsylvania, stressed the importance of disability-inclusive policy-making. “A Commission on People with Disabilities ensures a seat at the table,” she said, highlighting the need for involvement in decisions on housing, education, and employment.
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