Executive Order 2025-02

WHEREAS, individuals with autism contribute their talents, perspectives, and problem-solving abilities to strengthen Illinois’ workforce, enrich families and communities, and advance innovation in science, technology, the arts, and beyond;

WHEREAS, Illinois is fully committed to disability rights, inclusive services, and person-centered systems of care;

WHEREAS, all Illinoisans with disabilities are entitled to the full protections of state and federal civil rights laws, including the Illinois Human Rights Act, Section 504 of the Rehabilitation Act of 1973, and the Americans with Disabilities Act (ADA);

WHEREAS, autism is a neurological difference—not a disease or an epidemic—identified by trained clinicians and healthcare professionals, with rising identification rates attributable to improved practices, greater awareness, and expanded access to screening tools;

WHEREAS, Illinois is home to a growing community of self-advocates, professionals, and families working together to promote inclusion, independence, and opportunity for individuals with autism across all areas of life—from education to employment to civic engagement;

WHEREAS, Illinois has taken bold steps in recent years to invest in human services and promote competitive integrated employment for people with autism and other disabilities;

WHEREAS, the State of Illinois recognizes that fostering environments of belonging, dignity, and universal access strengthens our communities and ensures that all residents—including people with disabilities—can thrive and fully participate in society;

WHEREAS, people with disabilities, including individuals with autism, are too often stigmatized and underestimated, and public policy should never diminish the diverse strengths and potential of this community;

WHEREAS, recent federal proposals, including the specter of a national autism patient registry, raise serious concerns about the broad collection and use of personally identifiable autism-related data from state, private, and consumer sources without sufficient consent, justification, or accountability;

WHEREAS, such data collection practices risk violating the privacy, dignity, and autonomy of Illinois residents and may erode access to necessary support services, therapies, workplace accommodations, and lead to discriminatory profiling or surveillance of individuals with disabilities;

WHEREAS, decades of rigorous scientific research have shown no relationship between vaccines and autism, and public health depends on the promotion of evidence-based interventions that have been proven to improve the health of residents;

WHEREAS, the State of Illinois recognizes the importance of promoting credible, up-to-date information and guarding against the danger of misusing autism-related data to advance false narratives, stigmatize individuals, or erode confidence in essential public health measures;

WHEREAS, public trust in government data systems depends on meaningful protections for individuals, particularly those from historically marginalized communities, including the disability community;

WHEREAS, Illinois has a proud history of protecting its residents’ privacy, including through the Mental Health and Developmental Disabilities Confidentiality Act (MHDDCA), which provides protections more stringent than federal privacy law;

WHEREAS, Illinois has a compelling interest in securing the health and social needs of its residents, safeguarding personal health information, minimizing unnecessary data collection, and ensuring that no state agency scrapes or discloses sensitive information without a clear and lawful purpose;

THEREFORE, I, JB Pritzker, Governor of the State of Illinois, pursuant to the executive authority vested in me by Section 8 of Article V of the Illinois Constitution, do hereby order the following:

I. LIMITATION ON COLLECTION

All agencies under the Governor’s control (which includes any agency, department, office, officer, division, bureau, board, or commission in the executive branch of state government under the Governor’s  jurisdiction) shall work to ensure they are not collecting, or using data scraping technology to gather, autism-related data unless the collection fully complies with the Health Insurance Portability and Accountability Act (HIPAA) and the MHDDCA and is strictly necessary for:

• the administration of a state or federal benefits program, including payment and reimbursement, providing benefits or ensuring equality of opportunity, participation, or accessibility;
• the provision of medical or specialized care or services;
• the audit or evaluation of a federal- or state-supported education program or enforcement and compliance with federal or state legal requirements related to such a program; or
• compliance with established Illinois or federal law.
  

 “Autism-related data” means personally identifiable information maintained by a State agency that reveals an individual has been identified as autistic.

Contractors, grantees, and vendors acting on behalf of a State agency covered by this Executive Order shall be held to the same privacy and data protection standards and shall not collect, store, or disclose autism-related data outside the parameters of this Executive Order.

II. RESTRICTIONS ON DISCLOSURE

No State agency shall disclose personally identifiable autism-related data to any entity outside the State of Illinois government unless:

• the individual (or legal guardian) provides informed, written consent for a specific use;
• required by court order or subpoena from a court of competent jurisdiction;
• required to provide educational, medical, employment, housing, or other essential services and supports to an autistic individual; or
• required to comply with established Illinois or federal law.

All disclosures must be limited to the minimum amount of information necessary to meet the legal requirement, and should be anonymized where allowed and practicable.

For the purposes of this Executive Order, “informed consent” means voluntary, written authorization given by an individual, or their legal guardian, after being clearly informed of the nature, scope, purpose, risks, and potential consequences of the data collection or disclosure.

III. PRESERVATION OF CIVIL RIGHTS

Nothing in this Executive Order shall be construed to weaken or supersede any rights or protections guaranteed under federal and state law, including:

·         Section 504 of the Rehabilitation Act of 1973;

·         The Americans with Disabilities Act;

·         The Individuals with Disabilities Education Act (IDEA);

·         The Illinois Human Rights Act;

·         The MHDDCA;

·         The HIPAA; and

·         The Genetic Information Nondiscrimination Act (GINA)

·         Any other established law protecting individuals with disabilities from discrimination, including in healthcare, education, employment, housing, or public services, or protecting the privacy of personal health information.

Illinois reaffirms its unwavering commitment to the dignity, autonomy, and full civil participation of all residents with disabilities.

IV. COMPLIANCE REVIEW

The Governor’s Office shall, every two years, review agency compliance with this Executive Order and recommend additional safeguards as necessary to protect personally identifiable information and support the use of de-identified data for credible research. The Deputy Governor for Health and Human Services may appoint a time-limited, ad hoc Autism Data Privacy Advisory Group composed of at least 5 and no more than 13 State agency staff, self-advocates, family members, data privacy experts, or disability rights attorneys to discuss implementation and provide recommendations on improvements or necessary updates to continue this Order.

V. EFFECTIVE DATE

This Executive Order shall take effect on the date of its issuance.

VI. SAVINGS CLAUSE

This Executive Order does not contravene, and shall not be construed to contravene any contracts, agreements, or collective bargaining agreements.

VII. SEVERABILITY

If any provision of this Executive Order or its application to any person or circumstance is held invalid by any court of competent jurisdiction, this invalidity does not affect any other provision

or application of this Executive Order which can be given effect without the invalid provision or application. To achieve this purpose, the provisions of this Executive Order are declared to be severable.

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                                                                                                JB Pritzker Governor

Issued by the Governor: May 7, 2025

Filed with the Secretary of State: May 7, 2025