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SPRINGFIELD, Illinois – Illinois Governor JB Pretzker has signed an executive order that restricts the collection and sharing of autism-related data by state agencies in response to federal government efforts to create a database for autism research.
The order, signed by Pritzker on May 7, comes after Health and Human Services Director Robert F. Kennedy Jr. announced plans to use Medicare and Medicaid data to support autism research. Kennedy prioritizes autism as part of his Make America Healthy Movement, which focuses on ending what he calls a “chronic illness epidemic.”
The health secretary, who has long promoted the anti-vaccine view and shared claims that the vaccine has caused autism, told President Donald Trump’s cabinet meeting in April that the government knew the cause of the “autism epidemic” by September.
Kennedy’s rhetoric about autism has sparked anger from many of the autism community and health professionals. Colin Killick, executive director of the Autism Self-Advocacy Network, previously told Reuters that the health secretary has a history of promoting falsehoods about autism.
Autism is not considered a disease. This is a neurological and developmental disorder, also known as autism spectrum disorder, and is diagnosed based on challenges that involve social skills, communication, and repetitive behavior.
Pritzker’s order is intended to protect individuals from unauthorized data collection, according to a news release from the governor’s office, and “ensures that autism-related information will only be processed when necessary.”
“All Illinois deserve dignity, privacy, freedom to live without fear of surveillance or discrimination,” Trump administration Democrat and critic Pritzker said in a statement. “Just as Donald Trump and Dozi threaten these freedoms, we are taking steps to ensure that we are leaders in protecting the rights of autistic individuals and all people with disabilities.”
What exactly does Pritzker’s instructions do?
“All agencies under the governor’s control (including governmental bodies, departments, offices, officers, departments, departments, departments, boards, boards, or committees in the administrative departments of state governments under the governor’s jurisdiction) shall work in accordance with health insurance to ensure that data scraping technology for collecting autism-related data is not guaranteed, unless they fully comply with the MHDDCA.
To collect the data must also be “strictly necessary” as multiple reasons are listed depending on the order.
Additionally, the order state agencies do not disclose any personally identifiable information maintained by the state agencies in any non-Illinois government entity.
- Individuals or legal guardians will provide you with informational written consent for certain uses
- Required by court order or subpoena from a competent court
- You need to provide education, healthcare, employment, housing, or other important services to individuals with autism
- Must comply with established Illinois or federal laws
“All disclosures must be limited to the minimum amount required to meet legal requirements and must be anonymized if permitted,” the order states.
Local response to Pritzker’s executive order
Groups that work and support people with autism support the Pretzker scale. Springfield-based Hope offers a variety of services and programs for people with autism and other developmental disorders.
“In Hope and through the leadership of the Illinois Autism Program (TAP), we strongly support Governor Pretzker’s executive order protecting the rights and privacy of individuals with autism,” Chief Communications and Development Director Jodie Ogilby said in an email to the Journal Register of states in some of the US today’s network.
“This action reflects a deep understanding of the concerns raised by families, self-advocacy and service providers across the state,” the statement read.
In its 65-year operation, Hope has “created a culture rooted in dignity, consent, and personal-centered care. It does not share personal health information without explicit consent, nor does it believe that it will never cut or monitor individuals to data points for diagnosis,” the statement added.
Several other groups in the state expressed support, including the Southern Illinois Autism Association, Access Living, Autism Self-Advocacy Network, Chicagoland Autism Connection, and the Illinois Arc.
What is the federal government doing?
The National Institutes of Health and the Centers for Medicare and Medicaid Services are partnering with the research causes of autism spectrum disorder.
The agency is creating a database of autism diagnosed with Medicare and Medicaid enrollment, Reuters reported. These agencies are located within the US Department of Health and Human Services.
According to Reuters, the partnership between these institutions will help the National Institutes of Health build a real-world data platform that enables research into claims data, electronic medical records and wearable health monitoring devices at large.
“We pulled back the curtains with full transparency and accountability and waited too long for our families to hear,” Kennedy said in a statement.
The agency said the project complies with applicable privacy laws. Researchers will focus over time on the diagnosis of autism, health outcomes from healthcare and behavioral interventions, access to care and disparities through demographics and geography, and the economic burden of families and health systems.
Contributors: Swapna Venugopal Ramaswamy, Alyssa Goldberg, and Adrianna Rodriguez, USA Today; Reuters
