Latest news with #AutisticSelfAdvocacyNetwork
Yahoo
15-05-2025
- Health
- Yahoo
Autism data collection restricted by Illinois governor order
SPRINGFIELD, IL — Illinois Gov. JB Pritzker has signed an executive order restricting state agencies from collecting and sharing autism-related data, in response to federal efforts to create a database for autism research. The order, signed by Pritzker on May 7, came after Health and Human Services Secretary Robert F. Kennedy Jr. announced a plan to use Medicare and Medicaid data to help study autism. Kennedy has prioritized autism as part of his Make America Healthy Again movement, which focuses on ending what he calls the "chronic disease epidemic." The health secretary, who has long promoted anti-vaccine views and shared debunked claims that vaccines cause autism, said in April during a cabinet meeting of President Donald Trump that the government will know the cause of the "autism epidemic' by September. Kennedy's rhetoric on autism has sparked outrage from much of the autism community and medical experts. Colin Killick, executive director of the Autistic Self Advocacy Network, previously told Reuters that the health secretary has a history of promoting falsehoods on autism. Autism is not considered a disease. It is a neurological and developmental disorder, which is also known as autism spectrum disorder, and is diagnosed based on challenges with social skills, communication, and repetitive behaviors. Pritzker's order aims to protect individuals from unauthorized data collection and 'ensures that autism-related information is handled only when necessary and with informed consent," according to a news release from the governor's office. 'Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination," Pritzker, a Democrat and critic of the Trump administration, said in a statement. "As Donald Trump and DOGE threaten these freedoms, we are taking steps to ensure that our state remains a leader in protecting the rights of individuals with autism and all people with disabilities.' What is autism spectrum disorder? Why it affects each person differently "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," the order states, unless that collection fully complies with the Health Insurance Portability and Accountability Act and the MHDDCA. To be collected, the data must also be "strictly necessary" for multiple reasons listed, according to the order. Additionally, the order says that no state agency will disclose personally identifiable information that is maintained by a state agency to any entity outside the State of Illinois government, unless: The individual or legal guardian provides informed, written consent for a specific use It's required by court order or subpoena from a court of competent jurisdiction It's required to provide educational, medical, employment, housing, or other essential services and supports to an autistic individual It's 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," the order says. Groups that work with and support people with autism have expressed support for Pritzker's measure. Hope, based in Springfield, offers a range of services and programs for people with autism and other developmental disabilities. 'At Hope, and through our leadership of The Autism Program of Illinois (TAP), we strongly support Governor Pritzker's executive order safeguarding the rights and privacy of individuals with autism," said Chief Communications and Development Officer Jody Ogilvy in an email to The State Journal-Register, part of the USA TODAY Network. "This action reflects a deep understanding of the concerns raised by families, self-advocates, and service providers across the state," the statement read. Hope, in its more than 65 years of operation, has built a culture 'rooted in dignity, consent, and person-centered care. We do not and will not share personal health information without explicit consent, and we believe that individuals should never be reduced to data points or surveilled simply because of their diagnosis,' the statement added. Several other groups in the state also expressed support, such as the Southern Illinois Autism Society, Access Living, the Autistic Self Advocacy Network, the Chicagoland Autism Connection, and The Arc of Illinois. What is autism spectrum disorder? Steps you can take to support the community. The National Institutes of Health and the Centers for Medicare and Medicaid Services have partnered to research causes of the autism spectrum disorder. The agencies are creating a database of autism diagnosed Medicare and Medicaid enrollees, Reuters reported. Those agencies are within the U.S. Department of Health and Human Services. The partnership of those agencies will help the National Institutes of Health build a real-world data platform enabling research across claims data, electronic medical records, and wearable health-monitoring devices, according to Reuters. "We're pulling back the curtain, with full transparency and accountability, to deliver the honest answers families have waited far too long to hear," Kennedy said in a statement. The agencies said the project will comply with applicable privacy laws. Researchers will focus on autism diagnosis over time, health outcomes from medical and behavioral interventions, access to care and disparities by demographics and geography, as well as the economic burden on families and healthcare systems. Contributing: Swapna Venugopal Ramaswamy, Alyssa Goldberg, and Adrianna Rodriguez, USA TODAY; Reuters This article originally appeared on State Journal-Register: Autism data collection restricted by Illinois Gov. JB Pritzker order
USA Today
13-05-2025
- Health
- USA Today
Illinois Gov. JB Pritzker signs order restricting autism data collection
Illinois Gov. JB Pritzker signs order restricting autism data collection Show Caption Hide Caption RFK Jr.'s impact on HHS so far has some worried RFK Jr. reluctance to endorse the measles vaccine amid a deadly outbreak raised red flags. SPRINGFIELD, IL — Illinois Gov. JB Pritzker has signed an executive order restricting state agencies from collecting and sharing autism-related data, in response to federal efforts to create a database for autism research. The order, signed by Pritzker on May 7, came after Health and Human Services Secretary Robert F. Kennedy Jr. announced a plan to use Medicare and Medicaid data to help study autism. Kennedy has prioritized autism as part of his Make America Healthy Again movement, which focuses on ending what he calls the "chronic disease epidemic." The health secretary, who has long promoted anti-vaccine views and shared debunked claims that vaccines cause autism, said in April during a cabinet meeting of President Donald Trump that the government will know the cause of the "autism epidemic' by September. Kennedy's rhetoric on autism has sparked outrage from much of the autism community and medical experts. Colin Killick, executive director of the Autistic Self Advocacy Network, previously told Reuters that the health secretary has a history of promoting falsehoods on autism. Autism is not considered a disease. It is a neurological and developmental disorder, which is also known as autism spectrum disorder, and is diagnosed based on challenges with social skills, communication, and repetitive behaviors. Pritzker's order aims to protect individuals from unauthorized data collection and 'ensures that autism-related information is handled only when necessary and with informed consent," according to a news release from the governor's office. 'Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination," Pritzker, a Democrat and critic of the Trump administration, said in a statement. "As Donald Trump and DOGE threaten these freedoms, we are taking steps to ensure that our state remains a leader in protecting the rights of individuals with autism and all people with disabilities.' What is autism spectrum disorder? Why it affects each person differently What does Pritzker's order specifically do? "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," the order states, unless that collection fully complies with the Health Insurance Portability and Accountability Act and the MHDDCA. To be collected, the data must also be "strictly necessary" for multiple reasons listed, according to the order. Additionally, the order says that no state agency will disclose personally identifiable information that is maintained by a state agency to any entity outside the State of Illinois government, unless: The individual or legal guardian provides informed, written consent for a specific use It's required by court order or subpoena from a court of competent jurisdiction It's required to provide educational, medical, employment, housing, or other essential services and supports to an autistic individual It's 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," the order says. Local response to Pritzker's executive order Groups that work with and support people with autism have expressed support for Pritzker's measure. Hope, based in Springfield, offers a range of services and programs for people with autism and other developmental disabilities. 'At Hope, and through our leadership of The Autism Program of Illinois (TAP), we strongly support Governor Pritzker's executive order safeguarding the rights and privacy of individuals with autism," said Chief Communications and Development Officer Jody Ogilvy in an email to The State Journal-Register, part of the USA TODAY Network. "This action reflects a deep understanding of the concerns raised by families, self-advocates, and service providers across the state," the statement read. Hope, in its more than 65 years of operation, has built a culture 'rooted in dignity, consent, and person-centered care. We do not and will not share personal health information without explicit consent, and we believe that individuals should never be reduced to data points or surveilled simply because of their diagnosis,' the statement added. Several other groups in the state also expressed support, such as the Southern Illinois Autism Society, Access Living, the Autistic Self Advocacy Network, the Chicagoland Autism Connection, and The Arc of Illinois. What is autism spectrum disorder? Steps you can take to support the community. What is the federal government doing? The National Institutes of Health and the Centers for Medicare and Medicaid Services have partnered to research causes of the autism spectrum disorder. The agencies are creating a database of autism diagnosed Medicare and Medicaid enrollees, Reuters reported. Those agencies are within the U.S. Department of Health and Human Services. The partnership of those agencies will help the National Institutes of Health build a real-world data platform enabling research across claims data, electronic medical records, and wearable health-monitoring devices, according to Reuters. "We're pulling back the curtain, with full transparency and accountability, to deliver the honest answers families have waited far too long to hear," Kennedy said in a statement. The agencies said the project will comply with applicable privacy laws. Researchers will focus on autism diagnosis over time, health outcomes from medical and behavioral interventions, access to care and disparities by demographics and geography, as well as the economic burden on families and healthcare systems. Contributing: Swapna Venugopal Ramaswamy, Alyssa Goldberg, and Adrianna Rodriguez, USA TODAY; Reuters
Yahoo
08-05-2025
- Health
- Yahoo
Ill. Gov. JB Pritzker signs order protecting autism data in response to federal research plan under RFK Jr.
Gov. JB Pritzker on Wednesday signed an executive order that formally restricts the unauthorized collection of autism-related data by state agencies. Pritzker's order responds to federal efforts under Health Secretary Robert F. Kennedy Jr. to create databases of personal information for those with autism 'without clear legal safeguards or accountability,' according to a news release from Pritzker's office. 'Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination,' Pritzker said. 'As Donald Trump and (the Department of Government Efficiency) threaten these freedoms, we are taking steps to ensure that our state remains a leader in protecting the rights of individuals with autism and all people with disabilities.' Kennedy said in a news release Wednesday that he aims to build a database using Medicare and Medicaid data to enable research on the 'root cause' of autism. According to the release, the database falls under President Donald Trump's larger efforts to research 'chronic conditions' and will proceed 'in a manner consistent with applicable privacy laws to protect Americans' sensitive health information.' 'We're pulling back the curtain — with full transparency and accountability — to deliver the honest answers families have waited far too long to hear,' Kennedy said in the release. Pritzker's office said Kennedy's threats to create such a database have sparked 'outrage and concern from tens of thousands of people across the United States, from advocates, to parents, to individuals with autism.' His office also pointed to Kennedy's February statement when he referred to autism as an 'epidemic,' saying it stigmatizes a 'narrative condemned by leading health experts and advocacy groups across the United States.' Pritzker's order prohibits state agencies from collecting or disclosing personally identifiable autism-related data unless it's required for care, legal compliance or program eligibility. Even then, such efforts must still follow strict privacy and data minimization rules. Contractors, vendors and grantees who work with state agencies must follow the same restrictions, and are barred from storing the data. Any disclosures of autism-related information must also be limited to the minimum amount of information and anonymized when 'allowed and practicable,' according to the order. Several Illinois advocates, such as Chicagoland Autism Connection, the Southern Illinois Autism Society and Autistic Self Advocacy Network, supported the order. 'It is deeply gratifying to see Illinois affirming the value of our lives, affirming that autism is not an epidemic, and taking concrete action to protect our privacy and ensure personally identifiable information about us does not fall into the wrong hands,' said Colin Killick, executive director of Autistic Self Advocacy Network. Kennedy is a longtime vaccine critic who has pushed a discredited theory that repeated childhood vaccines cause autism. He announced in early April that he plans to determine the cause of autism by September through a 'massive testing and research effort' involving hundreds of scientists. Kennedy hired David Geier to lead the research effort in March. Geier also claims there's a connection between vaccines and autism, and the state of Maryland has found he was practicing medicine on a child without a doctor's license. The Department of Health and Human Services in a Wednesday news release said the database research, accomplished through a partnership between the National Institutes of Health and the Centers for Medicare & Medicaid Services, will use 'claims data, electronic medical records, and consumer wearables' to research diagnosis trends over time, outcomes from 'medical and behavioral interventions,' disparities of access to care and 'the economic burden on families and healthcare systems.' Pritzker's office said that his latest executive order makes Illinois one of the first states to formally restrict the mass collection or sharing of autism-related data absent legal or medical necessity. _____
Chicago Tribune
07-05-2025
- Health
- Chicago Tribune
Gov. JB Pritzker signs order protecting autism data in response to federal research plan under RFK Jr.
Gov. JB Pritzker on Wednesday signed an executive order that formally restricts the unauthorized collection of autism-related data by state agencies. Pritzker's order responds to federal efforts under Health Secretary Robert F. Kennedy Jr. to create databases of personal information for those with autism 'without clear legal safeguards or accountability,' according to a news release from Pritzker's office. 'Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination,' Pritzker said. 'As Donald Trump and (the Department of Government Efficiency) threaten these freedoms, we are taking steps to ensure that our state remains a leader in protecting the rights of individuals with autism and all people with disabilities.' Kennedy said in a news release Wednesday that he aims to build a database using Medicare and Medicaid data to enable research on the 'root cause' of autism. According to the release, the database falls under President Donald Trump's larger efforts to research 'chronic conditions' and will proceed 'in a manner consistent with applicable privacy laws to protect Americans' sensitive health information.' 'We're pulling back the curtain—with full transparency and accountability—to deliver the honest answers families have waited far too long to hear,' Kennedy said in the release. Pritzker's office said Kennedy's threats to create such a database have sparked 'outrage and concern from tens of thousands of people across the United States, from advocates, to parents, to individuals with autism.' His office also pointed to Kennedy's February statement when he referred to autism as an 'epidemic,' saying it stigmatizes a 'narrative condemned by leading health experts and advocacy groups across the United States.' Pritzker's order prohibits state agencies from collecting or disclosing personally identifiable autism-related data unless it's required for care, legal compliance or program eligibility. Even then, such efforts must still follow strict privacy and data minimization rules. Contractors, vendors and grantees who work with state agencies must follow the same restrictions, and are barred from storing the data. Any disclosures of autism-related information must also be limited to the minimum amount of information and anonymized when 'allowed and practicable,' according to the order. Several Illinois advocates, such as Chicagoland Autism Connection, the Southern Illinois Autism Society and Autistic Self Advocacy Network, supported the order. 'It is deeply gratifying to see Illinois affirming the value of our lives, affirming that autism is not an epidemic, and taking concrete action to protect our privacy and ensure personally identifiable information about us does not fall into the wrong hands,' said Colin Killick, executive director of Autistic Self Advocacy Network. Kennedy is a longtime vaccine critic who has pushed a discredited theory that repeated childhood vaccines cause autism. He announced in early April that he plans to determine the cause of autism by September through a 'massive testing and research effort' involving hundreds of scientists. Kennedy hired David Geier to lead the research effort in March. Geier also claims there's a connection between vaccines and autism, and the state of Maryland has found he was practicing medicine on a child without a doctor's license. The Department of Health and Human Services in a Wednesday news release said the database research, accomplished through a partnership between the National Institutes of Health and the Centers for Medicare & Medicaid Services, will use 'claims data, electronic medical records, and consumer wearables' to research diagnosis trends over time, outcomes from 'medical and behavioral interventions,' disparities of access to care and 'the economic burden on families and healthcare systems.'
Yahoo
04-05-2025
- Health
- Yahoo
RFK Jr.‘s ignorance about autism is bad enough. Republicans' Medicaid cuts are worse.
April 2025 was the weirdest Autism Awareness Month in my life, thanks largely to Robert F. Kennedy Jr. The secretary of health and human services finished the month as he began it: spreading conspiracy theories, misinformation and lies about autism, vaccines, basic medical theories and more. He promised a study that would find the causes of autism by September (a timeline his NIH director immediately abandoned). He threatened to form a registry of autistic people, then pulled back, but not before parents began canceling assessments out of fear of what the government might do with that information. And in an interview with Dr. Phil, he not only offered more false links between vaccinations and autism, but also chemtrail conspiracy theories and an insistence that parents considering vaccinating their kids should 'do their own research.' That's plenty of 'awareness' — the wrong kind of awareness. I need families like mine — my 18-year-old son is autistic — and those who care about us to become aware of the threats against Medicaid. I need awareness of the consequences that proposed GOP cuts would exact on families like mine, and what we can do to stop or mitigate the coming disaster. I don't know that we can stop Kennedy from saying ignorant and stigmatizing things, but we can't spend the next four years chasing down and debunking a man who literally doesn't believe in germ theory. But the Republican-controlled Congress, backed by the president, is planning radical cuts to Medicaid, and there's nothing more important for autistic people, their families and everyone with any disability or a loved one with a significant disability in America. Zoe Gross, director of advocacy at the Autistic Self Advocacy Network, says it's been the 'most intense April' for her in terms of media advocacy, with the need to refute public statements from the Trump administration, address community panic around the 'registry' and more. But the time spent just trying to bat back the worst statements comes with a cost. 'What we're missing,' she told me, 'is looking at the practical needs of autistic people in the U.S., how they can be met, and the government's role [in meeting them].' She's worried because the administration is 'trying to take hundreds of millions of dollars out of Medicaid' and there's no way to do that without cutting back on Home and Community Based Services (HCBS), which allow autistic people to live independently and prevent family members from having to leave the workforce to care for their loved ones. Right now, recipients of HCBS have their needs assessed, then get assigned a number of hours of support based on that assessment — already a highly contested and stressful practice. 'If Medicaid gets cut, states are going to have to make decisions,' Gross says. 'One thing they could do is cut people's hours. People will be stuck in apartments, in wheelchairs, unable to bathe, dress, go to the bathroom.' People who rely on support professionals to get them to and from work, to grocery shop, to function as highly independent members of society will lose that independence. People who need 24/7 care may be forced into institutions, or family members will have to leave the workforce to provide care at home. My son is autistic and needs a responsible adult around at all times. He also has Down syndrome, is intellectually disabled, and is nonverbal but a great communicator. I always worry that accurately describing his support needs will wrongly convey the idea that he's a burden. He just requires specific kinds of supports. They aren't really that expensive and are pretty easy to provide. Medicaid supplies him health care, an aide who allows him to access the world in the same ways that other teenagers do, and access to therapeutic programs not otherwise covered in school. As he grows older, HCBS will enable him to be supported while living at home (with us!) or in some other community context — if HCBS survives this budget process, that is. The other options are: institutionalization, which we won't do (though others' medical circumstances may warrant shifting to residential care), or a family member providing all the daily support without sufficient state assistance. Our situation isn't atypical, but one problem is that many Americans who rely on Medicaid, or love someone who does, don't even know it. States administer Medicaid under many different state-based program names, and users often don't know their state program is, in fact, Medicaid. One person who might help ensure people know this would be, of course, the secretary of health and human services. But at his confirmation hearings, alas, Kennedy seemed not to know anything about the $800 billion program. Autism Awareness Month began in 1970, and there have been both upsetting, divisive and downright weird months before. We're always a divided community, with splits among autistic people, among parents (many of whom are autistic, others of whom perpetuate the worst stereotypes about autism as epidemic), and between family and self-advocate communities. April can exacerbate such divisions, sadly, even without Kennedy perpetuating horrific stereotypes. Increasingly, the autistic community focuses on autism 'acceptance' rather than awareness, because acceptance is an action, something each of us can, and must, do. But Gross says that maybe this once, awareness might help. 'If there's increased awareness of autism this month, that's great,' she said, '[because] we want you to be aware of the precarious situation of Medicaid right now. We depend on it for daily survival.' This article was originally published on
