Pritzker and the Privacy of Autistic People

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.

A number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

He is now Trump's secretary of HHS. 

In light of the Trump administration's dishonesty and threats to privacy, plans for an autism registry are most disturbing.  Because Trump and RFK Jr. have a long history of lying about autism, we have to assume bad faith.

A May 7 release from Illinois Governor JB Pritzker:

Today, Governor JB Pritzker signed Executive Order 2025-02, affirming Illinois’ commitment to the civil rights, human rights, and data privacy of autistic residents. The order protects individuals from unauthorized data collection and sharing by state agencies and ensures that autism-related information is handled only when necessary and with informed consent. The order comes in response to rising national concerns about efforts to create federal autism registries or databases without clear legal safeguards or accountability.

“Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination,” said Governor JB Pritzker. “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.”

“We are rejecting stigma and standing with families, educators, and self-advocates across Illinois,” said Lieutenant Governor Juliana Stratton. “This order reinforces our belief that neurodiversity is a strength and that civil rights must evolve to meet emerging challenges in data and privacy.”

In February, Trump’s Health and Human Services (HHS) Secretary Robert F. Kennedy Jr. incorrectly referred to autism as an “epidemic,” a stigmatizing narrative condemned by leading health experts and advocacy groups across the United States. Secretary Kennedy has threatened to create an autism database though the HHS, sparking outrage and concern from tens of thousands of people across the United States, from advocates, to parents, to individuals with autism.

Under this Executive Order, state agencies may not collect or disclose personally identifiable autism-related data unless it is required for care, legal compliance, or program eligibility—and must always follow strict privacy and data minimization rules. Contractors, vendors, and grantees who work with state agencies are also covered by this executive order, and shall not collect, store, or disclose autism-related data. 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.

Illinois now becomes one of the first states to formally restrict the mass collection or sharing of autism-related data absent legal or medical necessity.

“This is a strong, timely safeguard. As new threats emerge to the rights of people with disabilities, Illinois is showing what leadership looks like—proactive, principled, and inclusive,” said Representative Natalie Manley (D-Joliet).

“This is a win for privacy, inclusion, and progress,” said Stephanie Brown, Executive Director of the Southern Illinois Autism Society. “We’re grateful the Governor is listening to the autism community and taking concrete action.”

“Too often, policies affecting the disability community are made without us" said Karen Tamley, President and CEO of Access Living, a service and advocacy center run and led by disabled people in Chicago. "We must work to remove societal barriers and protect disability rights. Today, Illinois is taking an important step to protect the privacy of autistic people in our state."

“As the lead agency for The Autism Program of Illinois, a statewide network built by Hope to serve thousands of children and families, we’ve long upheld the principle that private health information must never be shared without informed consent,” said Clint Paul, CEO of Hope. “For more than six decades, Hope has championed the rights of individuals with autism—through care, education, and advocacy. We commend Governor Pritzker’s executive order for aligning with our values: protecting privacy, rejecting stigma, and affirming that every person deserves to be treated with dignity and respect.”

"At a time when certain federal officials are sharing dangerous misinformation about autistic people, and when members of our community are understandably concerned about whether the federal government has our best interests are heart, 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.

“We are thankful to Governor Pritzker and his cabinet for taking this strong stand and action to protect our rights to consent and be heard about decisions that threaten the progress made by advocates, family members, educators, legislators, and other champions serving the disability community,” said Kimberly L. Johnson, Chicagoland Autism Connection. “People living with autism and their family members are not just numbers in a research project! ​ Nothing about us, without us!

"As a mother of a ten-year-old on the spectrum and Executive Director of The Arc of Illinois, I’m grateful for this bold step to protect the rights and dignity of autistic individuals,” said Samantha M Alloway, Executive Director at The Arc of Illinois. “At a time when fear and misinformation threaten hard-won progress, Illinois is choosing inclusion, consent, and civil rights. Our voices are being heard.”

“My son is deserving of the same rights to medical and personal privacy as anyone else in this country, even more so in today’s climate. This order is a huge relief for families like mine,” said Mike Baker, a Schaumburg advocate and father of a teenager with autism. “We want our children to have equal rights—not be treated like data points or monitored without cause. His privacy is worth our protection.”

This executive order builds on a rich history of disability rights advocacy in Illinois. Just last year, Governor JB Pritzker signed the bipartisan Dignity in Pay Act, which will eliminate subminimum wage and expand employment opportunities for people with disabilities across Illinois. Additional efforts from the Pritzker administration to protect Illinoisans with disabilities include banning discrimination in housing selection based on non-employment income such as disability payments, and expanding accommodations for people with disabilities seeking to attend legislative meetings, hearings, and other government events at the Illinois Capitol Complex. Funding for disability services and supports have also reached record levels during Governor Pritzker’s time in office.

Training Police in Illinois

 In The Politics of Autism, I discuss interactions between police and autistic people.  When cops encounter autistic people, they may not respond in the same way as NT people, and things can get out of hand. Among other things, they may misinterpret autistic behavior as aggressive or defiant. Training could help.

Maddie Franz at WQAD-TV:

Illinois law enforcement will soon be trained on how to interact with people with autism. That's thanks to a law that went into effect on Jan. 1.

According to the Autism Society, between 30% and 50% of all people killed by police have autism or other disabilities. It also estimates 20% of autistic kids have been stopped and questioned by age 21 — almost 5% have been arrested.

Eric Sommers, president of the Autism Society of the Quad Cities, said that's something the law could help.

"If you've met one person with autism, you've met one person with autism," Sommers said.

Every person on the autism spectrum is different. Some struggle to communicate with others, some panic in intense situations and others can't speak.

"All those situations could impact an interaction with law enforcement or first responders," Sommers said.

 He said those difficulties can result in violent outcomes during police interactions.

"Large amounts of force have been used against autistic individuals when they were not able to comply because they either didn’t understand the directions given to them or couldn’t react in what would be an appropriate manner," Sommers said. "There’s a lot that falls on the individual in those situations to react in the appropriate way, but when certain things are preventing those communications from taking place, it’s hard in that moment to capture that."

But with the new Illinois law, Sommers hopes those outcomes will be less common.
He said the training can build trust in the autism community and give police the tools they need.

Cops Tase Innocent Autistic Kid

 In The Politics of Autism, I discuss interactions between police and autistic people.  When cops encounter autistic people, they may not respond in the same way as NT people, and things can get out of hand. Among other things, they may misinterpret autistic behavior as aggressive or defiant, and respond with tasers, batons, chokeholds, or worse. Training could help.

Meredith Deliso at ABC:

An Illinois family said they are still reeling weeks after their 14-year-old son who has autism was tased by police in what they contend was a case of mistaken identity.

The family told ABC Chicago station WLS that the teen -- Avarius Thompson -- suffered injuries including a fractured hip during an encounter with Dolton police on the morning of Nov. 20, 2023.

According to the Dolton Police Department's incident report, Dolton police were assisting police in the nearby village of Riverdale in the search for four Black males who had fled from a crashed, stolen vehicle -- two of whom were allegedly carrying rifles and a handgun. 

An Autism Peer Group

In The Politics of Autism, I discuss the growing number of college students on the autism spectrum. 

Mariyam Syed writes at The Courier (College of DuPage, IL):

Beginning college can be particularly challenging for students with autism and other disabilities. For three current students with autism, finding a strong support system of peers and counselors, as well as academic accommodations, was important to achieve their goals and overcome stereotypes.

Sophomore student, Robert “Bobby” Henry, described himself as a very social person, who enjoys interacting with his peers as the president of Autismerica and a past leader in the New Student Orientation. Autismerica is a social club that serves students on the autism spectrum. Monthly meetings provide space to socialize and enjoy activities in a welcoming environment.

“Once you join, there’s a sense of joy that you belong to a group, a community of people,” Henry said. “When I’m around people who have the same disability as me, like being around PD (Pedro Gamez), it’s really helpful. I think we understand and trust each other. I’m so thankful that I have PD Gamez as my vice president; he’s really helpful and supportive of me.”

Gamez is vice president of Autismerica, which he has been part of since the fall of 2021. As the club officers, Gamez and Henry schedule the meeting activities and make sure new students feel welcome. Henry enjoys designing posters to promote Autismerica events.

One punctual attendee is Samuel Philippian, a sophomore pursuing environmental science, who rarely misses the Autismerica meetings.

“When I’m there, I just kind of feel free, and it helps to destress,” Philippian said. “We have a range of activities, Jenga bricks outside and indoors video games, and different board games. I’ve also gotten to show my friends digital artwork I’ve made in my free time for fun.”

TV Report on the Illinois Neurodiversity Initiative

In The Politics of Autism, I discuss the growing number of college students on the autism spectrum. 

Chance Sticklen at WCIA-TV in Champaign, Illinois:

Liam Crider has autism and says he’s still adjusting to the college setting.

“I’ve just navigated that, oh, it’s a new situation, it’s time to just go straight into it. I try not to worry about the social situations, I try not to worry about how I’m going to interact with my peers,” Crider said.

That’s where the Illinois Neurodiversity Initiative I-N-I program comes in, it helps students like Crider navigate campus.

...

“Being able to know what you’re good at and know what you need support in, and how you tell people about that,” Jeanna Kramer said.

Jeanne Kramer is the director of the Autism Program. She focuses on self-awareness and self-advocacy with students and says people with autism shouldn’t come with a label.

The four-year program aims to help students on the autistic spectrum and other neurodiverse students of any major achieve success academically, socially and professionally. Some components of the program include a pre-employment seminar course and an academic strategies course their first semester.

“Most people in their freshman and sophomore year of college are going through that identity seeking process, and it’s been really an honor and privilege to be part of this part of their identity,” Kramer said.

Illinois Neurodiversity Initiative

In The Politics of Autism, I discuss the growing number of college students on the autism spectrum. 

Sharita Forrest at the University of Illinois 

Neurodivergent students who will be incoming freshmen at the University of Illinois Urbana-Champaign in the upcoming fall semester are encouraged to apply to a program geared toward helping them succeed academically, socially and professionally.

The Illinois Neurodiversity Initiative offers a variety of supports and services for students with conditions in which the brain functions, learns and stores information in atypical ways, including autism, dyslexia and attention deficit hyperactivity disorder.

INI is a comprehensive four-year program that supports neurodivergent students in achieving their highest potential in college and beyond, said program creator Jeanne Kramer, the director of The Autism Program of Illinois, the on-campus partner of the statewide TAP Service Network.

INI was launched last fall as a pilot program with an inaugural cohort of 10 students – including some sophomores – who had a variety of majors, including business and engineering.

“INI has been incredibly beneficial for our son,” said a parent of one of the students. “Before this program, we were worried he may not be ready for college. However, INI has helped him make the transition. In addition, INI has taught him a lot about who he is and what his strengths are. We are grateful to the program for helping our son become a successful college student.”

Underserved Communities and Autism

In The Politics of Autism, I write about the experiences of different economic, ethnic and racial groups.   Inequality is a big part of the story. 

At CNN, Kathleen Toner reports on Illinois autism mom Debra Vines:

“My whole life revolved around finding services for Jason. To be able to get any type of assistance I had to take a train, plane, bus, and a magic carpet to get there,” she said. “Multiple cocktails of medication, changing doctors, changing hospitals. And most of it I did alone because my husband worked nights. I felt totally helpless.”

The support groups that she did find were in affluent communities. Not only was it hard for her to get to without a car, but when she did arrive, she felt out of place.

“I was the only Black woman there, I was the only person that had low income,” she said. “The women – they were great. They were giving me resources. But they would say, ‘They only cost $500.’ And I’m trying to figure how I’m going to get groceries for next week. Imagine how I felt then – even more helpless.”

...

In 2007, Vines and her late husband, James Harlan, created The Answer Inc., a nonprofit that supports families in underserved communities who’ve been impacted by autism. To date, Vines says the group has provided programming and guidance to more than 4,000 families in the Chicago area.

“Families are always asking questions, and we want to provide the answers,” she said. “I would say 95% of everything that we provide is a blueprint of what I was missing as a parent.”

Many of those who Vines supports are from Black and Brown communities – a demographic known to face hurdles in the diagnosis and treatment of autism. The CDC reports that Black and Hispanic children are less likely to be identified with the condition, and researchers at Boston University found that Black children are five times less likely to receive early intervention services than white children – due in part to racial bias and cultural stigma.

Zoom Could Hasten Autism Evaluations

In The Politics of Autism, I discuss evaluation and diagnosis.

Sarah D. Sparks at Education Week:

Months of lockdowns have left a massive backlog of children who show the warning signs of autism, waiting for a formal evaluation to get help.

That’s why Megan Roberts hopes to move autism evaluations out of doctors’ offices and onto Zoom conferences, using staff who already work regularly with schools and early learning centers. In the process, she also hopes to clear the entire waiting list of 1,224 children in need of an autism evaluations in Illinois.

Roberts’s project is one of seven projects that have been awarded a share of $14 million grants from the National Center for Special Education Research. All of the funded projects are focused on supporting students with disabilities who have been disproportionately affected by the pandemic.

Roberts, an associate professor for the communication sciences and disorders early-intervention research group at Northwestern University, and her team received a four-year, $3 million grant to develop and validate a telehealth-based protocol to train speech-language pathologists to evaluate students’ risk of autism spectrum disorders. Using speech-language pathologists dramatically widens the pool of evaluators, as most school districts and Early Head Start centers have them, while a 2019 study found 84 percent of U.S. counties have no access to autism medical diagnosticians.

...

About 85 percent of the time, parents of those diagnosed with autism spectrum disorders start to voice concerns about their child’s development well before age 3, according to the National Center on Birth Defects and Developmental Disabilities. But even before the pandemic, the center found only 42 percent received a developmental evaluation to diagnose the disorder by age 3, and 30 percent of children had not yet been formally diagnosed by age 8.

Program at the University of Illinois

  In The Politics of Autism, I discuss the growing number of college students on the spectrum. 

 From the University of Illinois:

Incoming freshmen at the University of Illinois Urbana-Champaign this fall with autism spectrum disorder can take part in a new program that will offer a variety of support to help them succeed at college and beyond.

The Illinois Neurodiversity Initiative pilot program will offer autism-specific services to promote students’ academic, social and professional success..

Often used in reference to autism, neurodiversity also comprises conditions such as dyslexia and attention deficit hyperactivity disorder in which the brain functions, learns and stores information in nontypical ways.

Jeanne L. Kramer, the director of The Autism Program and the I-Ready virtual summer camp for college-bound high school students with autism, said the goal of I-N-I is to support neurodivergent freshmen from move-in day until they obtain jobs and graduate.

The program will address four types of skills or needs – academics, social skills, mental health and job skills.

Students in the program can participate in courses that promote self-awareness, self-advocacy and executive functions such as planning and organizing their coursework; a social mentoring group; and individualized weekly mental health check-ins with clinicians in the department of psychology.

While some freshmen with autism may have needed little help with academics and never had to study during high school, others may have received assistance through an individualized education plan or a 504 plan, a formal agreement with the school that protects students’ rights to reasonable accommodation, Kramer said.

Transitioning to a college environment where support services are decentralized and parents are not present to advocate on their behalf can make college particularly challenging for some of these students, Kramer said.

“Being successful academically at the university level requires many new social skills that most of these students won’t come by naturally,” Kramer said. “The first class that we’re getting started will teach participants strategies to help them succeed in their courses. These will include study skills and strategies such as joining a study group, communicating with their professors and keeping track of their deadlines for assignments and projects.”

Since many young people with autism have difficulty making social connections, I-N-I will offer a mentoring program in which peers will help participants practice the necessary social skills to connect with other students, clubs and organizations that share their interests.

Obtaining and maintaining employment also requires social skills and preparing participants for the working world will be a critical piece of the initiative, Kramer said. I-N-I will give participants opportunities to engage with potential employers through internships and other events.

“I have corporations that want to hire neurodiverse talent,” Kramer said. “The neurodiverse brain is wired to solve some of the world’s biggest problems, with the right support in place and the right people surrounding them. These are the minds that corporate America is really looking for.”

Two incoming freshmen who participated in the I-Ready virtual summer camp in 2021 were I-N-I’s first applicants, Kramer said. The goal is to have from five to 12 students in the inaugural cohort this fall.

“We want to keep it small because we really want to get to know these students and their families, and to understand and be responsive to their wants and needs,” Kramer said.

A support group for participants’ parents will be available as well.

“The question I get most often from parents is: ‘What does the U. of I. have to offer students with autism?’” Kramer said. “Everyone agrees the need is there, and now we’re at a point where we can do something about it.”

Students can apply to I-N-I online at https://illinoisaces.co1.qualtrics.com/jfe/form/SV_80MbZFe35LewwJ0.

The deadline for applications is July 15.

 

Chicago Takes on the Cliff

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

A release from the City Colleges of Chicago:

Recently, Mayor Lori E. Lightfoot, 19th Ward Alderman Matt O’Shea, City Colleges of Chicago, the Lester and Rosalie Anixter Center, and Special Olympics Chicago/Special Children’s Charities are joining forces to ensure young people with different developmental abilities can continue to pursue education, employment and enrichment after they have maxed out their eligibility for special education transition services at the age of 22.

The After 22 Project will be recognized as a Comprehensive Transition Program (CTP) that will help transition participants into meaningful postsecondary activities by providing flexible learning opportunities, leadership, and job skills training. In addition, students will be able to access and participate in special recreation opportunities, and internship and job placement opportunities. The Occupational, Life and Academic Skills (OLAS) Program at Daley College will provide a support system to students, in addition to access to the educational experiences they need to continue their life-long learning journey.

The OLAS program is an innovative inclusive pathway to engage students who otherwise will have to wait an average of seven years to access funding for these services after they reach age 22, leaving a gap in their progress to meaningful engagement, employment and further education. The project will flexibly and deliberately map out a plan for participants based on interest and skill level.

“Far too often, people with disabilities fall through the cracks in our system and are left without access to opportunities to achieve upward mobility,” said Mayor Lightfoot. “With the After 22 Project, we will be able to create the social safety net they deserve, as well as move Chicago one step closer to becoming the most accessible city in the country. I commend Alderman O’Shea, City Colleges of Chicago and the rest of our community partners for launching this new continuum of support for our residents with disabilities to ensure they are able to thrive both before and well after they turn 22.”

“The idea of the After 22 program was presented to me when I was president of the Board of Directors of Special Olympics Chicago/Special Children’s Charities, and we immediately embraced the idea of providing for our athletes in a meaningful way that includes continuing education and job training skills,” said Matt O’Shea, past president of SOC/SCC. “Through the support of our Board of Directors, Mayor Lori Lightfoot, the Anixter Center, Chancellor Salgado, and President Janosky, our athletes now have the unprecedented opportunity to continue to advance their skills and education after the age of 22. Our athletes are passionate, hard-working and fully embrace any opportunity they are given. This program is a win-win for everyone involved.”

“After 22 is the missing piece that equalizes the pathway for young adults with developmental disabilities to access college and thrive,” said Rebecca Clark, President and CEO at Anixter Center. “This historic step bridges the gap, creating opportunities for students to secure meaningful work, and positively engage in, and contribute to their communities. I believe After 22 will change the lives of the people we serve and our Chicago neighbors for years to come.”

“As Chicago’s community college system, City Colleges is responsive to the needs of our community,” said City Colleges of Chicago Chancellor Juan Salgado. “After 22 is a unique opportunity that will allow us to prepare developmentally disabled Chicagoans to contribute their abundant talents to our neighborhoods and economy.”

Chancellor Salgado added that Daley College President Janine Janosky will lead the After 22 program at City Colleges of Chicago. “One of the greatest strengths of Daley College is our students’ diversity,” said President Janosky. “We welcome all students and look forward to the vibrancy these new students will bring to our campus life.”

The first year of the program will serve up to 20 students through non-credit job skill development courses at Daley College. Daley College and Anixter Center team members will collaborate to implement customized educational plans to include competency-based, student-centered curricula to introduce and reinforce workplace soft skills, such as communication strategies, self-advocacy skills, professionalism, and navigating institutions. Additionally, students will practice occupational skills through an internship on campus, such as at the Daley food pantry and professional clothing closet, and other service areas, and will offer them the chance to participate in campus activities. Daley College and the Anixter Center will assemble an advisory council composed of business leaders, students, parents, faculty, and special education experts and advocates to provide guidance and advice on program development, additional partnership connections, and possible funding sources.

The Anixter Center will match 10 participants to jobs or internships at a community employer partner, ensuring students have integrated, competitive job opportunities. In conjunction, employers will get the support they need to ensure success and retention for these employees.

Longer-term, Daley College will develop a certificate program for students with disabilities as part of a larger City Colleges goal of creating greater access to education for community members. The Anixter Center will work with broad-scale commitment from Chicago businesses to hire and retain this untapped talent pool.

The program aims to build an integrated system of opportunities, weaving together public and private partners to support adults with disabilities as they get access to meaningful opportunities throughout Chicago.

“The After 22 program opens new doors of opportunity for our athletes by empowering them with continuing education, important life and job skills, and a readiness for the future,” said Carolyn Daley, president of the Board of Directors of Special Olympics Chicago/Special Children’s Charities. “Our organization has a mission of inclusiveness for all, and the After 22 program provides just that. We look forward to continuing our partnership with Anixter and City Colleges of Chicago on this amazing program. It is my hope that the After 22 program is an incredible success, and continues to grow through the years to come.”

Center for Neurodiversity at Aurora University

 In The Politics of Autism, I discuss the growing number of college students on the spectrum. 

From Aurora University in Illinois:

Aurora University today announced the new Betty Parke Tucker Center for Neurodiversity to support students on the autism spectrum as they earn their college degrees and take their first steps toward launching their careers. The center will house AU’s Pathways Program for college-capable students with autism spectrum disorder (ASD) and include a first-of-its-kind, newly constructed residence hall with sensory supportive features designed specifically for college students with ASD. The residence hall will house both neurodiverse and neurotypical students as part of the university’s effort to integrate students with autism into campus life.

AU will welcome its first class of college freshmen and transfer students on the autism spectrum into the Pathways Collegiate Program for the 2022-2023 academic year, and applications are already underway.

“We are thrilled to be one of the first universities in the nation to welcome college-capable students on the spectrum to a fully immersive campus experience that will help them reach their potential in their studies and their careers,” said AU President Rebecca L. Sherrick. “These young people have so much to share and contribute. We know that when provided with the right support, the right environment, the right encouragement, college-capable students on the spectrum will earn their degrees and take meaningful roles in society and productive roles in the workplace.”

The Betty Parke Tucker Center for Neurodiversity was made possible by a $1.3 million gift from alumnus Don Tucker ’51 in memory of his late wife Betty Parke Tucker ’52. A graduate of Aurora College, Betty Parke Tucker devoted more than 40 years to the education community as an elementary teacher, guidance counselor, and school psychologist. She had a heart for students who didn’t adjust easily and made it her life’s work to help lift them up. The lead gift in her honor establishes a fund to support AU students with ASD and exemplifies her lifelong commitment to education and her belief that students facing challenges have the capacity to excel — provided educators create the right structure and support.

According to the Centers for Disease Control and Prevention, the rate of ASD diagnosis in the U.S. is one in 54 children, more than double the rate of 1 in 110 a decade earlier – making ASD the fastest-growing developmental disability in the U.S. An estimated 44 percent of individuals with ASD have IQs of average to above-average, and a portion of these students are capable of succeeding at a university, if only they have the right support.

Yet, services for teenagers with ASD come to a virtual halt after high school, just as families need them most. Researchers describe this support deficit as a “services cliff,” because parents often feel as if their children are about to fall off a cliff, with little help in sight.

AU is stepping into the gap with its Pathways Program. The broad-based program provides a bridge for students with ASD and their families, helping them to make the transition from high school to college and from college to career.

Distinctive Elements of the AU Collegiate Experience for Students on the Autism Spectrum

• First-Of-Its-Kind Residence Hall: Building on Aurora University’s 100-plus year history of opening doors to higher education for diverse students from all walks of life, AU is building a new, state-of-the-art residence hall with sensory supportive spaces designed specifically for students on the autism spectrum. The spaces are designed with the goal of alleviating anxiety so that students can focus their energy and emotions on a positive college experience. The five-story, integrated residence hall is slated to open in late 2022 to both neurodiverse and neurotypical students.
• Weekly Advisor Meetings and Peer Mentors: Students will work with an expert team to develop an individualized plan to address executive, social and emotional functioning, and independent living skills and then will meet weekly with their assigned advisor to ensure they have the support they need to succeed. Each student is also paired with an AU student mentor trained in supporting individuals on the spectrum.
• Career Exploration Experience: An increasing number of companies are creating inclusive environments with resources to support neurodiverse talent. During their junior and senior years, students will be paired with a community mentor in their field of interest who will teach them valuable career skills and provide shadowing opportunities to practice professional social skills and more.

AU also provides high school and transfer students on the autism spectrum an opportunity to get a preview of college life through AU’s Pathways Summer Camps and Pathways College Connections programming.

“Society has an increasingly important stake in not only supporting individuals with autism, but welcoming them into our communities,” said Brianne Jonathan, ’11, MA ’15, director of AU’s autism initiative and Pathways Program. “While many of these students have the cognitive ability and desire to succeed in college, communication and social impairments can stand in the way. At AU, we can support them with the right educational structure that makes it possible for them to thrive.”

Curbing Restraint in Illinois

In The Politics of Autism, I discuss the use of restraint and seclusion.  Many posts have mentioned these techniques, both in schools and facilities for people with disabilities.

Zeta Cross at The Center Square:

The Illinois legislature has put an end to the practice of isolating children in “quiet rooms” and the usage of prone physical restraint.

State Rep. Jonathan Carroll, D- Northbrook, said the practice traumatizes children.

“When you take a child who is on the autism spectrum, and that child is having some sort of an episode, you don’t lock that child in a room by themself. That is what we do to our worst criminals,” Carroll said.

In 2019, after reading a joint investigative report by ProPublica and the Chicago Tribune, Carroll became determined to put an end to the practice in Illinois schools. Solitary time-outs are used too readily as a discipline measure, Carroll said.

The authors of the Tribune-ProPublica articles reported on instances where children as young as five were left alone in small rooms for hours at a time.

“We are failing these children,” Carroll said. “There are different pathways that we can go with these kids.”

After 18 months of work, House Bill 219, received bipartisan support and passed unanimously out of the House on May 30. Gov. J.B. Pritzker told Carroll that he intends to sign the legislation when it gets to his desk. The goal of the law is to eliminate solitary time out and prone restraint within three years.

Zinger in Illinois Law Prevents Medicaid Coverage

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for people with intellectual and developmental disabilities.

Megan Valley & Raymon Troncoso at the Belleville News-Democrat:

In the Budget Implementation Act passed in 2019, legislators included coverage for behavioral therapy in the medical assistance program, which administers state and federal funds from Medicaid and similar services to qualifying residents. Any changes in how Medicaid funding is being used must be included in a State Plan Amendment that is submitted to the federal government for approval, which is where the mistake occurred.

The Illinois Medicaid plan requires that a practitioner must be a Board Certified Behavior Analyst, or BCBA, and possess a second credential as either a Licensed Clinical Social Worker or a Licensed Clinical Psychologist in order to receive Medicaid funding for behavioral therapy. That plan was submitted to and approved by the federal government.

A notice from the Illinois Department of Healthcare and Family Services released in October confirmed that dual credentials would be required to receive Medicaid funds through the department for behavioral therapy.

But the Illinois Autism Task Force, based in the Illinois Department of Human Services, warned in a February letter to Gov. JB Pritzker and the General Assembly that “the dual credential requirement will result in devastating barriers to access.” That same letter said only 26 BCBAs possessed one of the other required certifications and it was unclear whether any of the 26 provided behavioral therapy.

The Autism Task Force, in a 2020 meeting, claimed that $42 million placed in the state’s FY 2020 budget for behavioral therapy through Medicaid remained untouched due to the mistake.
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HB 16, which currently sits in the House Rules Committee with about five weeks of the General Assembly’s session remaining, would amend the Illinois Public Aid Code to allow for just a BCBA certification for Medicaid coverage of behavioral therapy starting on July 1, the beginning of the 2022 fiscal year.

Infections in Illinois Developmental Centers

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all. 

 Jennifer Smith Richards and Jodi S. Cohen at Pro Publica Illinois:

While much of the attention related to COVID-19’s impact on vulnerable populations has focused on deaths at nursing homes, infection rates are remarkably high in another kind of residential setting: state-operated centers for adults with cognitive or behavioral disabilities.

As of Thursday, more than 1 in 5 people living in these developmental centers had tested positive for the novel coronavirus, state data shows. That’s more than double the infection rate seen in nursing homes and other long-term care facilities, where confirmed cases account for about 7% of residents, according to the Illinois Department of Public Health.

Of about 1,650 people who live in the seven developmental centers, which are scattered throughout the state, at least 355 have tested positive, or 21.5%. Eight residents have died, as have four workers.

Prone Restraint in Illinois

In The Politics of Autism, I discuss the use of restraint and seclusion.  Many posts have mentioned these techniques, both in schools and facilities for people with disabilities.

 Jennifer Smith Richards and Jodi S. Cohen report at Pro Publica Illinois:

State lawmakers said Monday that they will push for a law to ban face-down restraint of children in Illinois schools after learning that education officials had reversed their positions and decided to allow the controversial practice.

The lawmakers’ response came after the Chicago Tribune and ProPublica Illinois reported Monday that the Illinois State Board of Education, pressured by a few schools that regularly use prone restraint, quietly decided to allow the technique until July 2021 with the hope that it would then be phased out.

“Prone restraints carry the most serious risk to students and are unacceptable. When students return to school after the Stay at Home order, they should not be put in a situation where their most basic dignity can be stripped away,” Sen. Ann Gillespie, a Democrat from Arlington Heights, said in a statement.

Gillespie and Rep. Jonathan Carroll, a Democrat from Northbrook, introduced legislation in the Senate and House last fall that would ban isolated timeouts and limit the use of physical restraints in schools after a ProPublica Illinois-Tribune investigation, “The Quiet Rooms,” revealed widespread misuse of both. Their bills, as filed, did not directly address prone restraint.

More than 30 states already ban prone restraints. ISBE had originally voted to ban the practice, but the agency then reluctantly “negotiated” with the legislative rule-making committee to allow prone restraint for a year, a spokeswoman said.

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Of the 149 public comments submitted to ISBE to advocate for prone restraint, more than 60% came from individuals affiliated with Giant Steps or Marklund Day School, two small private schools that serve students with autism. They said the restraint is effective for students who have difficulty regulating their emotions and is safe when done properly.

Lawmakers Urge End to Dangerous Restraint and Seclusion

In The Politics of Autism, I discuss the use of restraint and seclusion.  Many posts have mentioned these techniques, both in schools and facilities for people with disabilities.

A release from Rep. Sean Casten (D-Illinois):

U.S. Representative Sean Casten (D-IL-06), along with U.S. Senators Dick Durbin (D-IL) and Tammy Duckworth (D-IL), led a letter to U.S. Secretary of Education Betsy DeVos, asking the Department to issue federal guidance banning public schools’ use of seclusion and restraint practices that restrict student’s breathing and create other life-threatening conditions.

This letter follows a November 2019 joint report by the Chicago Tribune and ProPublica Illinois that revealed that in Illinois alone, there were over 20,000 seclusions from August 2017 to December 2018. The same report also found that hundreds of these seclusions involved children in first grade or younger and disproportionately involved children with disabilities. This prompted the Illinois State Board of Education to issue an emergency rule to ban these practices. However, only four other states have taken similar action, leaving millions of children still at risk.

The letter said in part, “We are gravely concerned by harmful student seclusion and restraint practices occurring in schools around our country…The use of seclusion and dangerous restraints is putting the psychological well-being and lives of children at risk every day and must be addressed at the federal level immediately. We respectfully urge you to update the Department of Education’s 2016 guidance to ban seclusion, ban restraints that restrict breathing and are life-threatening, and promote evidence-based alternatives to reduce the use of physical restraint.”

The letter was also signed by U.S. Representatives Jan Schakowsky (D-IL-09), Mike Quigley (D-IL-05), Danny K. Davis (D-IL-07), Cheri Bustos (D-IL-17), Brad Schneider (D-IL-10), Bill Foster (D-IL-11), Raja Krishnamoorthi (D-IL-08), Jesus “Chuy” Garcia (D-IL-04), and Ayanna Pressley (D-MA-07)

Read the full letter below or click here.

January 15, 2020
The Honorable Betsy DeVos
Secretary
U.S. Department of Education
400 Maryland Avenue SW
Washington, DC 20202

Dear Secretary DeVos:

We are gravely concerned by harmful student seclusion and restraint practices occurring in schools around our country. We respectfully urge you to update your federal guidance banning seclusion, banning restraints that restrict breathing and are life-threatening, and promoting evidence-based, positive behavior strategies and de-escalation techniques to reduce the use of physical restraint.

According to a November 2019 report by the Chicago Tribune and ProPublica IL, children as young as five, disproportionately children with disabilities, are being locked alone in empty rooms for behavioral concerns or to “calm down” after misbehavior. In reality, the rooms have the opposite effect: children throw themselves at the door and scratch at the windows trying to escape. Some are recorded as urinating on themselves, undressing, attempting to commit suicide, or crying out that they want to die. Tragically, in some states, children have died in seclusion rooms.

In Illinois alone, 20,000 such seclusions were reported from August 2017 to December 2018, hundreds of which involved children in first grade or younger, according to the November Tribune article. Not only does this practice cause students to miss valuable classroom time—some are secluded for hours on end—it can also cause serious physical and psychological trauma. A December Tribune and ProPublica IL follow-up article found that restraints—including restraints that can restrict breathing—were being used even when students and staff were not in physical danger, in violation of Illinois law.

We were relieved that, following the publication of the November report, the Illinois State Board of Education (ISBE) responded swiftly to ban seclusion in schools across the state. However, that makes Illinois only the fifth state to ban seclusion. There are tens of millions of American children still at risk of experiencing this detrimental practice.

The use of seclusion and dangerous restraints are putting the psychological well-being and lives of children at risk every day and must be addressed at the federal level immediately. We respectfully urge you to update the Department of Education’s 2016 guidance to ban seclusion, ban restraints that restrict breathing and are life-threatening, and promote evidence-based alternatives to reduce the use of physical restraint.

We appreciate your prompt attention to this matter.