State Autism Profiles: Illinois

DEMOGRAPHICS

In 2000, 4,330 or 1.46% of children ages 3-21 who received special education services in Illinois have autism. In 2013-2014, 20,677 or 7.02 % of children with disabilities ages 3-21 who received special education services have autism.

Table 1-1: IDEA Part B - Children with Autism in Illinois for 1999-2000 and 2014-2015
(Child Count by Age Group)

	1999-2000	2014-2015
Age 3-5	641	1,970
Age 6-21	3,689	19,867
Age 3-21	4,330	21,837

Source: Reported by the State of Illinois in accordance with Section 618 of IDEA to U.S. Department of Education, Office of Special Education Programs

Table 1-2: IDEA Part B - Children with Disabilities in Illinois for 1999-2000 and 2014-2015
(Child Count by Age Group)

	1999-2000	2014-2015
Age 3-5	28,787	37,599
Age 6-11	133,378	119,684
Age 12-17	123,364	121,404
Age 18-21	11,787	16,229
Age 6-21	268,529	257,317
Age 3-21	297,316	294,916

STATE TASK FORCE

Illinois Autism Task Force
In July 2004, Gov. Rod Blagojevich signed into law “An Act in Relations to Persons with Disabilities” (Public Act 093-0773), which included a requirement for the Department of Human Services to establish a task force to evaluate and assess the support system for individuals with autism. The Illinois Autism Task Force convened in April 2004 and continues to convene periodically. The task force is comprised of members of the public (parents, educators, professionals with an interest in autism) and representatives of various state agencies. The task force prepared a report in 2005, which outlined challenges and proposed recommendations for improving the support systems for individuals with autism. Recommendations include an autism waiver and health insurance coverage. The most recent report prepared by the Task Force was in December 2008.
http://www.dhs.state.il.us/OneNetLibrary/27897/documents/DD%20Reports/Autism%20Progress%20Report%20FINAL.pdf

STATE INSURANCE COVERAGE

In 2015, H.B. 235 amended the insurance code to require that individual or group policies of accident and health insurance shall cover charges incurred, and anesthetics provided, in conjunction with dental care provided to a covered individual in a dental office, oral surgeon's office, hospital, or ambulatory surgical treatment center if the individual is under age 26 and has been diagnosed with an autism spectrum disorder.
https://legiscan.com/IL/text/HB0235/2015

“Brianna’s Law” requiring insurance coverage of autism services in the state of Illinois was signed into law as Public Act 95-1005 by Gov. Rod Blagojevich on December 12, 2008. The law requires health insurance coverage for the diagnosis and treatment of autism spectrum disorders to individuals less than 21 years of age to the extent that coverage is not already provided up to a maximum of $36,000 per year. Diagnosis and treatment must be provided by a licensed physician, licensed psychologist, or certified registered nurse practitioner for any medically necessary services, such as psychiatric care, psychological care, rehabilitative care, therapeutic care (speech, occupational, and physical therapy), pharmacy care, applied behavior analysis (ABA) therapy. The law was amended in 2009 by 2009 Ill. Laws, P.A. 95-1049 (S.B. 101 of 2008) to require insurance coverage for habilitative services for children less than 19 years of age with a congenital, genetic or early acquired disorder, including autism spectrum disorders. Habilitative services includes occupational therapy, physical therapy, speech therapy and other services prescribed by the insured's treating physician pursuant to a treatment plan to enhance the ability of a child to function with a congenital, genetic or early acquired disorder.
http://www.ilga.gov/legislation/publicacts/95/PDF/095-1049.pdf

In June 2012, Governor Pat Quinn signed into law S. 679 amending the state's 2008 autism insurance reform law by assuring that any individual already diagnosed with an autism spectrum disorder would not lose benefits as a result of any changes adopted in the upcoming fifth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM-5).

Since 2005, Illinois has also had mental health insurance parity legislation (H.B. 59/Public Act 94-0402) requiring insurers to cover serious mental illness, including pervasive developmental disorders, at a level commensurate with other health coverage. H.B. 1372 was introduced during the 2011 legislative session to require that coverage for autism spectrum disorder meet the same parity requirements afforded to mental health coverage and treatment. The bill also required a minimum benefit (as opposed to a maximum) of $36,000 per year be provided by health, accident or managed care plans for people with autism spectrum disorder. H.B. 1372 was re-referred to the Rules Committee on March 17, 2011; no further action was taken.

ESSENTIAL HEALTH BENEFITS

Under the Affordable Care Act, Illinois will offer autism services including applied behavior analysis (ABA) in its Essential Health Benefits package. ABA is included in the “Rehabilitative and Habilitative Services” section of the EHB. The exchange is being run by the federal government.
(Blue Cross Blue Shield of Illinois; BlueAdvantage Entrepreneur PPO)

MEDICAID

Illinois Waiver for Adults with DD
Effective July 1, 2012, this waiver provides adult day care, developmental training, residential hab, supported employment-individual/group, OT-extended, PT-extended, speech therapy-extended, service facilitation, adaptive equipment, behavior intervention/treatment, behavioral-psychotherapy/counseling, emergency home response services, home accessibility mods, non-medical transportation, personal support, skilled nursing, temporary assistance (formerly crisis), training/counseling services for unpaid caregivers, vehicle mods for individuals with autism, DD, IID ages 18 and older. This waiver will expire June 30, 2017

Illinois Home and Community-Based Services Waiver (HCBS): IL Support Waiver for Children and Young Adults w/DD (0464.R01.00)
This waiver, implemented on July 1, 2010, provides adaptive equipment, service facilitation, assistive technology, behavior intervention and treatment, home accessibility modifications, personal support, temporary assistance, training and counseling services for unpaid caregivers, and vehicle modifications for individuals ages 3-21 with autism, intellectual disability, and developmental disabilities (The Illinois General Assembly passed S.B. 51 and was signed into law on August 17, 2006 to include autism spectrum disorders as a developmental disability in the Department of Human Services’ disability database for eligibility considerations under the waiver), developmental disabilities or intellectual disability who would otherwise need ICF/MR facility level care. Participation is limited to a total of 600; new enrollees will be selected from the Prioritization of Urgency of Need for Services (PUNS) database. This waiver expires on June 30, 2015.
http://www2.illinois.gov/hfs/MedicalPrograms/HCBS/Pages/default.aspx

Illinois Home and Community-Based Services Waiver: IL Residential Waiver for Children and Young Adults w/DD
This waiver, implemented on July 1, 2010, provides child group homes, adaptive equipment, assistive technology, and behavior intervention and treatment for individuals ages 3-21 with autism, developmental disabilities, and intellectual disability. This waiver expires June 30, 2015.
http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/Waivers.html

EDUCATION

On August 17, 2007, Gov. Rod Blagojevich signed into law (Public Act 95-0257/S.B. 79) an amendment to the School Code Section 14-8.02 which requires the individualized education program (IEP) team consider the following factors when developing an IEP student with autism spectrum:

Verbal and nonverbal communication needs;
Need to develop social interaction skills and proficiencies;
Needs resulting from the child’s unusual responses to sensory experiences;
Needs resulting from resistance to environmental change or change in daily routines;
Needs resulting from engagement in repetitive movements and stereotyped movements;
Needs for any positive behavioral interventions, strategies, and supports to address any behavioral difficulties resulting from autism spectrum disorder; and
Other needs resulting from the child’s disability that impacts progress in the general curriculum, including social and emotional development.

http://openstates.org/il/bills/95th/SB79/

Behavior Analysts Licensure Board
S.B. 1895, introduced in 2015, would create the Behavior Analyst Licensing Act. Two years after the effective date an individual could not provide applied behavior analysis or practice as an assistant behavior analyst unless licensed. The bill also provides for creation of the Board of Behavior Analysts within the Department of Financial and Professional Regulation. The bill was referred to Assignments. No further action has been taken.
https://legiscan.com/IL/bill/SB1895/2015

EDUCATION PROGRAMS AND ACTIVITIES

Currently, researchers at three Illinois universities – Northern Illinois, University of Illinois Chicago, and University of Chicago – are collaborating on a statewide study to determine statewide diagnostic and service needs and outcomes for children with autism spectrum disorder aged 18 and younger.
https://niu.az1.qualtrics.com/jfe/form/SV_cxe3qDry5gODfox

ISBE-Autism Peer Buddy Program
On April 12, 2011, the resolution HR 43 was adopted in order to urge the State Board of Education to encourage the establishment of a peer buddy program in each school district for children with autism spectrum disorder enrolled in elementary, middle, and high school.

Illinois Yellow Dot Program
Illinois Yellow Dot program, a life-saving, traffic safety initiative that provides first responders with critical information to improve emergency care for persons involved in vehicle crashes. The Yellow Dot program provides personal health information to emergency responders in order to promptly care for a crash victim.
http://www.theautismprogram.org/autism-resources/yellow-dot-illinois/

OTHER STATE RESOURCES

The Autism Program of Illinois
The Autism Program of Illinois (TAP) was established by Public Act 93-0395 to serve as a statewide information resource for autism. TAP is managed by the Hope Institute for Children and Families and includes three regional centers and two affiliate centers. With funding from the Illinois Department of Human Services, TAP formed The Autism Program of Illinois Service Network, comprised of 27 agencies and universities, to meet the specific needs of families and children with autism. TAP is not currently funded and its future is uncertain.
http://www.theautismprogram.org/

Children and Family Services
Under H.B. 30, enacted on August 7, 2009, The Department of Children and Family Services was required to develop and implement a special program of family preservation services that support foster and adoptive families who are experiencing hardships caring for a child with a pervasive developmental disorder such as autism. Additionally, the Department may offer services to any family regardless of whether or not a report has been filed under the Abused and Neglected Child Reporting Act. They also are required to develop and implement a public information campaign alert to inform the public about special family preservation services.

Illinois Human Rights Act Amendment
On August 16, 2011, Illinois Governor Pat Quinn approved H.B. 3010 to amend the Illinois Human Rights Act in order to broaden the definition of "disability" to also include any mental, psychological, or developmental disability, including autism spectrum disorders. (775 ILCS 5/)

Autism Spectrum Disorder Wallet Card
In August 2016, the legislature passed and the Governor signed H.B, 4257 (Public Law 99-0829) requiring the Department of Human Services to issue an Autism Spectrum Disorder wallet card that specifies that the cardholder has been medically diagnosed with autism spectrum disorder, upon the request of a person with autism,. The Department may collect a reasonable fee that does not exceed $10.

STATE LEGISLATIVE CALENDAR

The Illinois General Assembly meets each year on the second Wednesday beginning in January. The 2016 Regular Session convened on January 13, 2016 and is expected to adjourn on May 31, 2016. The 2017 session is expected to begin on January 11, 2017 and continue throughout the year.
http://www.ilga.gov/

Sponsors of Autism Legislation

Sen. William Delgado (D-Chicago) District 2
Sen. Emil Jones (D-Chicago) District 14
Sen. Don Harmon (D-Oak Park) District 39
Sen. David Koehler (D-Peoria) District 46
Rep. Lou Lang (D-Skokie) District 16
Rep. Mary Flowers (D-Chicago) District 31
Rep. Patricia R. Bellock (R-Westmont) District 47
Rep. Michelle Mussman (D- Schaumburg) District 56
Rep. Michael Tryon (R-Crystal Lake) District 66
Rep. Dan Brady (R- Bloomington) District 105

Prepared by Easterseals, Inc.; November 2016.

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Behind the Screen: Conversations with a Disability Advocate and Filmmaker
Wednesday, May 24, 2023, 12:17 PM

Behind the Screen: Conversations with a Disability Advocate and Filmmaker

Wednesday, May 24, 2023, 12:17 PM

As a teenager, Alexander Freeman was weary about listening to his mom’s suggestion of taking a…

As a teenager, Alexander Freeman was weary about listening to his mom’s suggestion of taking a film class in high school, but he eventually gave in. Years later, he admits his mom was right – taking that class inspired a new passion with the medium and launched his career. “I took the class and absolutely fell in love…I think, on a really basic level as humans, we are drawn to [it] and we can’t help but listen to what’s happening on the screen,” Alexander explained.

Now an award-winning filmmaker and disability-rights activist, Alexander was recently featured in LA Weekly Magazine for his documentary, The Last Taboo. The documentary explores the topic of sexuality and intimacy from the eyes of disabled adults. Alexander has Cerebral Palsy and uses his own experiences and the true experiences of others to inspire his work. His other documentary, The Wounds We Cannot See, which shares one woman’s real battle with addiction, PTSD, and mental illness, is available for purchase on Amazon Prime Video.

Alexander described how filmmaking took the utmost priority in his life at an early age: “I didn’t really have a ton of friends in high school or a lot of room to socialize, so I was just like, ‘I don’t need people’ – I am just going to focus on what I am good at. So, all through high school, I made films.”

That focus paid off. “At the end of school, I got very lucky because I caught the attention of a production company,” he said. That company saw Alexander’s work and immediately offered to finance his next project. From there, his career began.

When asked about his connection to Easterseals, Alexander laughed, “I really think Easterseals is in my blood!”

It was Alexander’s parents who got him involved with Easterseals Massachusetts. He recalled, “My parents were like, okay, we have a child with disabilities, what do we do? What kind of services are out there? And Easterseals was there for [them].”

Alexander on location filming The Wounds We Cannot See.

Alexander shared, “A lot of the technology that I used was directly from Easterseals, so I started working with an Easterseals technology specialist when I was really little, and then that continued as I got older and grew up.”

Alexander has one thing he wants everyone to take away from his story: “I am only where I am today because of a lot of people who helped me along the way, and I think that is a very important lesson, not just for me or people with disabilities, but a lesson to people in general…No one gets where they are on their own. Everyone must have moments where they have to look back and say thank you for all your help.”

Alexander’s disability advocacy continues the spirit of helping others along the way. His latest project, a YouTube series titled Life with Cerebral Palsy | Q & A, is described on his film production company OUTCAST Productions’ YouTube channel as “Everything you wanted to know about living with a disability, especially cerebral palsy, but didn’t know how to ask.”

To keep up with his continuing work, you can follow Alexander on Instagram, @realalexanderfreeman.
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Friday, May 19, 2023, 12:13 PM

A Trip to DC: Press Briefings, Panel Discussions and Sharing the Room with the President

Friday, May 19, 2023, 12:13 PM

It’s not every day you share the stage with a rising star in the television world, but it happ…

It’s not every day you share the stage with a rising star in the television world, but it happened for me!

Ben speaking at the Capitol Visitors Center

In Washington, D.C., I had the distinct honor of participating in the release of Easterseals’ brand-spanking new “State of Disability Equity and Access,” a special report showcasing the improvements made for the disability community since the signing of the Americans with Disabilities Act 33 years ago. More importantly, the report serves as a call-to-action for the necessary improvements to ensure full inclusion for future generations – a compelling reason to travel 12 hours by car to D.C., I’d say.

On stage at the historic National Press Club, I joined the transportation panel, moderated by MSNBC’s Symone Sanders. She’s incredible, and if I’m being honest, I felt right at home on stage interacting with one of television’s most popular hosts. I’ve never met an unfriendly microphone! Our panel discussed developments that have eased travel for people with disabilities, but I focused on the importance of improving the airlines to be more accessible for wheelchair users.

This isn’t a new story. A decade ago, I traveled to Washington, D.C., with a plan and a petition, advocating for more accessible airlines, desiring a system where I could fly without having to get out of my own wheelchair. The reality is, as I told The Advocate, I haven’t flown since my injury – it’s too dangerous. The current system risks major harm to my chair, and even possibly long-term health concerns. It’s not right, and I’m elated that Easterseals has joined this fight for flight!

Enjoying the Lincoln Memorial at night

Prior to my on-stage, under-the-lights discussion with Symone Sanders, we officially unveiled the report during a press briefing at the Capitol Visitors Center – a fairly new addition to the Capitol Building. Tucked inside a room that has been used for major press briefings, I spoke alongside Easterseals CEO, Kendra Davenport; Jessica Tuman, VP, VOYA Cares; Ehrhardt Preitauer, president and CEO, Caresource; and outstanding disability advocate Emily Ladau, and Kathleen Perez of the Coelho Center, who helped produce the report. Boy, was I in good company, with a group of passionate inclusion activists assembled in DC with a vision for the future. Every time I travel to D.C., something special happens – this time was no different.

Speaking of special, for the first time, our group visited the Lincoln Memorial and laid our eyes on D.C., at night, where you can actually see the reflection of the Washington Memorial in the reflecting pool. We saw and snapped a photo with Cory Booker as he was leaving the Capitol. I was even in the same hotel, the Washington Hilton, as the President of the United States!

Meeting Senator Cory Booker

Yep, when we arrived at our hotel, the woman behind the desk asked us, “will you be leaving the hotel in your car tomorrow? If so, it will be difficult if not impossible, as this place will be crawling with Secret Service.” I had to ask, “why is that?” The woman replies, “the president will be here.” My mother retorts in a very serious tone, “the president of WHAT?” The woman replies, “the President of the United States, ma’am.” Only in DC! And you better believe I worked my way into the room with President Biden!

What a trip. Sharing the same room, albeit a large conference, as the president, sharing the stage with a television star, observing the reflection pool at night, talking with Cory Booker (who, I might add, was a very kind gentleman, chatting with kids from Indianapolis before snapping a photo with me), being with my Easterseals friends, and hanging with my Change for Balance colleagues as we worked the Easterseals forum. It was absolutely another successful trip to our nation’s capitol.

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I’m a dreamer, but I believe, together, we can create a more inclusive world for all of us.

But then again, maybe I’m just starstruck from my time on stage with Symone.
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Autism Diagnosis in Women and Girls

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Hats off to TED Talks! They highlight people with disabilities pretty regularly there, and with this…

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Now a sophomore at Austin College, Kate Kahle is an advocate for autism acceptance. From her TED Talk’s bio:

She hopes to promote autistic self-love as well as help neurotypical individuals see autism not as a tragedy or a disease, but rather for what it is, a lifelong, genetic developmental disability that is just another way of thinking and being in the world.

In her TED Talk, Kate tells her audience that she’d always had autistic traits, but it wasn’t until she developed severe anxiety during her freshman year in high school that her parents took her in for an evaluation. “I just thought I was weird,” she says with a shrug.

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“For every four boys diagnosed with autism, only one girl is diagnosed,” she says, adding that studies following children since birth show that the natural ratio of males to females with autism is closer to three to one.

But wait! Why am I telling you all this? Better to hear it from the expert! Kate Kahle outlines her thoughts on this discrepancy in her TED Talk, Why Autism is Often Missed in Women and Girls.
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