Assemblyman Angelo Santabarbara, Chair of the Assembly Committee on People with Disabilities, is urging Governor Kathy Hochul to issue an executive order modeled on his newly introduced Autism Data Privacy Protection Act, legislation designed to prevent the unauthorized collection and disclosure of autism-related health information in New York State.

“New Yorkers with autism deserve the same rights to privacy and dignity as anyone else,” said Santabarbara. “With federal efforts underway to create a centralized autism database, we must act now to ensure this sensitive information isn’t shared without clear, informed consent.”

Santabarbara’s proposal comes in response to Executive Order 2025-02 signed earlier this month by Illinois Governor J.B. Pritzker, which restricts state-level data sharing with federal entities unless individuals provide written consent. The move was praised by Autism Speaks, disability rights advocates, and privacy experts alike.

Santabarbara is urging Governor Hochul to issue a similar executive order to support his bill and protect New Yorkers immediately.

“While I continue to advance this legislation through the Assembly, I’m asking the Governor to act without delay. An executive order would show strong leadership and demonstrate that New York stands with people with disabilities – not against them,” Santabarbara added.

The Autism Data Privacy Protection Act would:

• Prohibit state agencies, contractors, or grantees from collecting or disclosing personally identifiable autism-related health data without informed, written consent;
• Allow exceptions only when required by court order, for essential services, or under existing law;
• Require all data shared to be anonymized and limited to the minimum necessary.

Santabarbara, who is also the father of a young adult with autism, has been a leading voice for disability rights in the Legislature, including efforts to expand access to communication supports, inclusive education, and public safety reforms.

“People with autism and their families deserve to know their data is safe. This is about trust, transparency, and doing the right thing,” Santabarbara said.