Illinois is the first state to block the federal government from accessing state data on autism.
The order, signed by Gov. JB Pritzker last week, is in response to federal efforts to create a mass data collection on autism.
Health and Human Services Secretary Robert F. Kennedy Jr. plans to use Medicare and Medicaid data to create an autism registry with the goal of finding the cause of what he called an "autism epidemic." Pritzker's order prohibits the collection in Illinois without consent from an individual or guardian.
Jeff Chan, associate professor of special education at Northern Illinois University, said along with concerns about accidental disclosure of protected health information, right now there is no single cause or cure for autism and he is skeptical a database could change it
"I don't even know if we will ever find that one, single cause," Chan acknowledged. "There's a variety of factors in play on the genetic side and the environmental side that are all affecting parents and mothers and children, which eventually lead to the expression of those symptoms."
Federal agencies said they would protect sensitive health information. More than a dozen autism organizations and advocates are pushing back against the planned database and any rhetoric claiming autism is "curable" or is caused by vaccines.
One in 31 children in the U.S. is diagnosed as being on the autism spectrum. Chan noted in Illinois the rate increased from one in 333 children in 2002 to one in 51 children in 2023. He added while cases are rising, the numbers are also influenced by earlier diagnosis and improved data collection.
Chan emphasized the importance of oversight of data and interpretation and cautioned about the potential for drawing conclusions from incomplete information or cherry-picking evidence.
"Anyone could collect data and they can interpret it differently, and they can spin it differently," Chan stressed. "That happens all the time. And that's happened in the past, especially about the causes of autism."
Chan advised caution regarding individuals with extreme theories. He acknowledged the difficulty parents and caregivers face in evaluating information and the importance of institutions to help navigate the evidence.
"There's people out there that, for whatever reason, are true believers about a particular narrative about autism," Chan explained. "You have to be a very careful consumer about what you take in and what evidence you choose to believe."
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By Marilyn Odendahl for The Indiana Citizen.
Broadcast version by Joe Ulery for Indiana News Service reporting for the Indiana Citizen-Free Press Indiana-Public News Service Collaboration.
In a move applauded by advocates and lawmakers alike, the Indiana General Assembly will be taking a closer look at the estimated $2.2 billion in medical debt that is saddling many Hoosiers and often causing a devastating impact beyond the household budget.
“We all want to be able to care for ourselves and our loved ones, but medical debt poses undue financial hardship that prevents this from being a reality for countless Hoosiers,” Zia Saylor, researcher at the Indiana Community Action Poverty Institute, said in a press release. “It is important that lawmakers recognize the medical debt crisis we have and the urgent need for policies to address it.”
The Legislative Council included medical debt among the 22 topics that it assigned for further examination by the interim study committee process this summer and fall. On Wednesday, the council members unanimously passed a resolution that divided the topics between more than a dozen interim committees.
Initially, the Legislative Council began with 100 proposals for study topics this summer, plus 300 agency reports that presented more topics for possible review, according to George Angelone, executive director of the Legislative Services Agency. Through a “bipartisan process,” the list was whittled down to less than two dozen.
Other subjects scheduled for study include the economic value of Indiana’s public land for recreation, barriers to entering licensed professions, teaching water safety as part of the K-12 curriculum, salaries for K-12 administrators, the usage and cost of long-term-care insurance, and pollution caused by improperly discarded cables. Also, the Government Reform Task Force has been charged with reviewing the “efficiency and effectiveness” of various state boards, commissions and councils, and the Artificial Intelligence Task Force, established by state statute in 2024, will continue to examine the use of AI technology and the potential effects on Indiana residents’ constitutional rights, employment and economic welfare.
After the council hearing, Senate President Pro Tempore Rod Bray, R-Martinsville, said the work of the interim study committees are an important part of the legislative process. It allows state representatives and senators to dive into the topics and enables the public to provide input as well, which is helpful, he said. Bray and House Speaker Todd Huston, R-Fishers, serve as chair and vice chair, respectively, of the Legislative Council, which is comprised of eight members of the Indiana Senate and eight members of the House.
“Maybe it doesn’t end up in a proposed bill for the next legislative session, but people are always going to walk away with more facts and more information about that particular subject,” Bray said.
Democratic lawmakers were upbeat about the assignments to the committees. Senate Minority Leader Shelli Yoder, D-Bloomington, said the Democrats pushed topics that focused on improving Hoosiers’ lives. Many families, she said, are struggling to raise their children, care for their aging parents and stretch their wages to cover rising costs.
“That why our caucus fought very hard to make sure that this year’s study committee didn’t just check a box (but) that they had something meaningful to offer to Hoosiers,” Yoder said after the hearing. “We pushed hard for real topics, real impact and we have many successes to point to.”
‘Medical debt is no-fault debt’
For Democrats, the legislature’s decision to study medical debt is a win.
The interim study committee on the courts and the judiciary has been tasked with examining medical debt, the only topic on its agenda. As part of its study, the committee will look at financial protections for individuals through caps on monthly payments for such debt and limitations on collections or liens on property, along with restrictions on garnishment of wages. Also, the committee will focus on nonprofit and county hospitals by reviewing the definition for charitable care and the requirement to offer payment plans in addition to notices about medical bills to patients.
Speaker Huston and Sen. Fady Qaddoura, D-Indianapolis, both suggested the medical debt topic.
Huston said the topic was spurred by the many different constituents who reached out, telling their stories of the immense financial burden that overdue medical bills can be.
“We will at least take a look at it and understand it, particularly for low-income folks or people that have had some kind of… large, expensive medical procedures,” Huston said of medical debt. “How do you help them get out from behind the eight ball? We’ll take a look at that and see what the options are.”
During the 2025 legislative session, Qaddoura introduced Senate Bill 317 which sought to address medical debt by offering protections similar to those that will be studied by the committee. The measure died after it was narrowly defeated in a 26-to-23 vote in the Senate.
“We should stop penalizing people for getting sick,” Qaddoura said in a statement. “Medical debt is often unavoidable and disproportionately affects those already struggling. Our goal should be to create a path forward that lifts people up, not holds them back.”
Indiana residents are some of the most burdened with medical debt in the country. A 2022 study by the Indiana Community Action Poverty Institute, Grassroots Maternal and Child Health Initiative, and Prosperity Indiana, found that residents of the Hoosier state had the 11th highest share of medical debt in collections nationwide, which equals $2.2 billion outstanding and was the highest among the state’s Midwestern neighbors.
Delinquent or high medical debt contributes to a number of harmful consequences, according to the report. More than negatively impacting the financial health of a household, medical debt can degrade an individual’s physical and mental health. Also, unpaid medical bills can create barriers to credit and housing and can lead to garnishment of wages, property liens and reduced access to health care services.
“Medical debt is no-fault debt,” Dave Almeida, director of state government affairs for the Leukemia & Lymphoma Society, said in a press release. “It’s different from other debt because no one chooses to become sick, which means that no one should have to choose between putting food on the table, paying the rent, putting the kids through college, or engaging in life-saving treatment.”
Council bypasses some committees
Six study committee created by statute were not assigned any topics, including the elections body.
The interim study committee on elections has not met since 2017. However, bills that mostly restrict voting and elections have been introduced each legislative session, culminating in a flood of legislation this year that one voting-rights advocate described as “an assault on democracy.”
Bray did not express any concern about not giving any topics to elections and other committees, including education, public policy and public safety, and military affairs.
“We had a lot of legislation in those areas this last session and sometimes you’ve got to let some of those issues bake a little while … before you have a new issue that you really have to grapple with,” Bray said.
Yoder said she was disappointed that the Child Welfare Task Force was not assigned any topics. Passed this session with strong bipartisan support, House Enrolled Act 1273, authored by Rep. Dale DeVon, R-Granger, created the 22-member task force to study child welfare topics. The law requires the task force to submit two reports in October 2026 and October 2027, but does not specify any areas or subjects that should be studied.
Sen. Andrea Hunley, D-Indianapolis, was hopeful the study committees’ examination of the issues most concerning to families, such as clean water, maternal health and medical debt, would yield some legislation addressing key concerns in the 2026 General Assembly session.
“We also know that a single study in the interim isn’t going to fix everything,” Hunley said. “But we also know that it can spark the change that is necessary. It can be the momentum builder that we need to make sure that we’ve got the momentum going into session, so that we can have the bipartisan support necessary to pass important legislation that this is the time where that happens.”
Marilyn Odendahl wrote this article for The Indiana Citizen.
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A Pennsylvania nurse is sounding the alarm about proposed cuts to Medicaid funding now in Congress, cuts she said could jeopardize care for her son as well as millions of Americans.
The House version of the budget reconciliation bill would slash federal Medicaid spending by at least $700 billion to fund a tax-cut extension and other Trump administration priorities.
Jennifer K. Graham Partyka, a registered nurse in Northeast Pennsylvania, joined the "Fair Share for Americans" bus tour in Scranton this week. She said Medicaid is a lifeline for her 28-year-old son living with Crohn's disease.
"We were lucky, because when he was very sick, he qualified for Medicaid," Partyka recounted. "He was fully disabled until he started getting the treatments and started getting better. There's a version of that Medicaid called, like, 'Medicaid for working disabled people.'"
Medicaid covers about one in four Pennsylvanians, including 750,000 with disabilities. Partyka pointed out her son, who works full-time, would not be affected by the work requirements Congress wants to add for Medicaid eligibility. It would mean adults without children would need to work or volunteer 80 hours a month to keep their coverage. Republicans are pushing to pass the reconciliation bill by July 4 but debate could delay it.
Partyka emphasized Medicaid is one of the top five sources of payment to every hospital in the nation. With many already struggling to stay open and fully staffed, she thinks cutting Medicaid would also be disastrous for people's access to care.
"My professional experience with Medicaid is that most of the recipients of Medicaid are children," Partyka stressed. "I'm also going to share that 60% of people in nursing homes list Medicaid as their primary payer."
She added voters ultimately have the power to hold lawmakers accountable for the fallout from major budget decisions, noting many congressional seats will be up for grabs in 2026.
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