Latest news with #Illinoisan
Yahoo
7 days ago
- General
- Yahoo
Bill creating Office of State Public Defender heads to Pritzker's desk
SPRINGFIELD, Ill. (WCIA) — A bill helping the state's public defenders with a new office in the Judicial Branch is headed to the governor's desk. Public defenders are government appointed lawyers for people accused of criminal charges who cannot afford legal representation. The new independent office would create rules to establish public defenders' appointments, powers and pay. A commission would also be formed to help with operational costs and funding. WATCH: Public Defenders take another crack at creating statewide office County offices would also mimic those new roles. Supporters of the bill said that would be among the most substantial reforms to the state's public defender system since 1949. 'Every Illinoisan deserves a strong defense, no matter their income,' said State Senator Robert Peters (D-Chicago). 'Instating this new system would ensure real help reaches people who have been left behind in conversations about criminal justice reform for far too long.' In the current system, judges can hire and fire chief public defenders. The American Bar Association discourages that system as it calls for public defenders to be independent. 'For years, our local public defenders have been doing more with less – handling impossible caseloads and fighting uphill battles,' Peters said. 'This bill gives public defenders the tools to do the job right and truly stand up for their client.' The bill passed the Senate Saturday and now heads to Pritzker's desk. The full text of the bill can be found here. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
Yahoo
15-05-2025
- Health
- Yahoo
Pritzker issues executive order in response to federal effort to create autism database
Illinois' governor signed an executive order that restricts state agencies from collecting and sharing autism-related data, in response to federal efforts to create a database for autism research. Gov. JB 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 his office on May 7. 'Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination," Pritzker stated. "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.' Here's how some groups in Illinois are responding to the order and more about what it will do. Groups that work with and support people with autism have expressed support for the 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. "This action reflects a deep understanding of the concerns raised by families, self-advocates, and service providers across the state," the statement read. More: 'It just seems so unfair:' Illinois families brace for possible Medicaid cuts 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 have expressed support for the order such as the Southern Illinois Autism Society, Access Living, the Autistic Self Advocacy Network, the Chicagoland Autism Connection, and The Arc of Illinois. The National Institutes of Health and the Centers for Medicare & 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, according to a Reuters report. Those agencies are within the U.S. Department of Health and Human Services, of which Robert F. Kennedy Jr. is Secretary. The partnership of those agencies will help NIH build a real-world data platform enabling research across claims data, electronic medical records, and wearable health-monitoring devices, Reuters added. "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. More: Illinois' head of tourism was quietly fired 3 months ago. Here's why "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 writes, 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. 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. Tom Ackerman covers breaking news and trending news along with general news for the Springfield State Journal-Register. He can be reached at tackerman@ This article originally appeared on State Journal-Register: Pritzker issues executive order restricting autism data collection
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
10-05-2025
- Health
- Yahoo
Pritzker signs executive order to protect privacy of autistic residents
PEORIA, Ill. (WMBD) — Governor JB Pritzker has signed an executive order that will protect the privacy of autistic residents in Illinois. Health and Human Services Secretary Robert F. Kennedy floated the idea of creating an autism database. This prompted immediate concern from many people. 'Their information should be theirs to share how they decide it should be shared,' said Holly Swearingian, manager of OSF Healthcare's Autism Pathways. 'So that was very concerning for a lot of our individuals and families is not knowing where their information might be going.' Autism Pathways helps to provide support for people of all ages with an autism diagnosis, or for anyone pursuing a diagnosis. 'With the safeguard in place, we'll continue to educate families on their privacy rights and their rights to their health care information privacy,' said Swearingian. 'But also, the importance of pursuing some of those state-based resources or other local agency resources that exist to support them and to help their loved ones live fulfilling lives in whatever way they can.' US Health department will analyze data from autistic Medicare, Medicaid enrollees, RFK Jr. says In a statement, Pritzker followed up his order with his reasoning: to keep in place the privacy that autistic residents are owed. 'Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination,' Pritzker said. '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.' To learn about how to get involved with Autism Pathways, click here. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
