May 12, 2022, The Autism Task Force

Illinois Department of Human Services
Autism Taskforce Meeting

May 12, 2022

10am - 12pm


  1. Introductions
  2. Workgroup Updates

    1. Transition
    2.  Insurance
    3. Act Early
    4. Adult Services
  3. Division Updates- (DD, EI, DRS, DMH, ISBE)
  4. New Business

    1. View Autism Task Force Website Location
    2. Training 2022
  5. Old Business

    1. Update on ABA State Plan Assessment
  6. Announcements
  7. Next Steps
  8. 2022 Calendar year schedule

Full Autism Task Force:

  • Thursday August 18, 2022, 10:00 A.M. to noon
  • Thursday November 10, 2022, 10:00 A.M. to noon

Subcommittee meetings prior to next full task force meeting:

Act Early:

  • Wednesday April 27, 2022 1:00 PM

Autism Insurance Subcommittee:

  • Monday May 16, 2022 11:00 AM
  • Monday June 20, 2022 11:00 AM
  • Monday July 19, 2022 11:00 AM
  • Monday August 15, 2022 11:00 AM

Adult Services Subcommittee:

  • Thursday June 2, 2022 11:00 AM
  • Thursday July 7, 2022 11:00 AM
  • Thursday August 4, 2022 11:00 AM

Autism Transition Subcommittee:

  • Wednesday May 11, 2022 10:00 AM
  • Wednesday June 8, 2022 10:00 AM
  • Wednesday July 13, 2022 10:00 AM

Meeting Recording:

Autism Taskforce Meeting May 12, 2022 10am - 12pm

Task Force Members:

  • Bean Gloria DHS-DD
  • Boheme Patti Little Friends Center for Autism
  • Brott Amanda TAP
  • Brown Stephanie Autism Society, Southern IL
  • Buti Mo
  • DiMateo Tom Wellspring
  • Frieburg Ann DHS-EI
  • Gamucio Ramiro Parent
  • Hammond Christine DHS-OAS
  • Healey Sherry Parent
  • Herbstritt Terry PACTT Foundation/Parent
  • Olson Kiya ASPB Therapy Pathways
  • Ovalle Matte Grupo-Salto
  • Pasha Zoubida Family Resource Center on Disabilities
  • Pfister Amy DayOnePACT
  • Powers Paula ISBE
  • Roestel Cari Act Early Ambassador, LEND
  • Weldon Sean DHS-DRS
  • Williams Constance DHS/MH


  • Sikora Adam 
  • Sagel Andrea, Easter Seals
  • M Cass 
  •  Daniela 
  • Reuter-Yuill Lillith 
  • Dixon Mary 
  • Dyson Shannon 
  • Garlock Shannon 
  • Heller Tamar 
  • Boyer Valerie 
  • Malone Wanda 
  • Hanson Kristy 
  • Johnson Christine 
  • Kelly Mary, The Autism Program
  • Shawler Leslie 
  • Davis Jinny 
  • Hamer-Sinclair Mariel 
  • Mulford Laura 
  • Gharst Kristin 
  • Root Marla 

Workgroup Updates


  • Survey to get out to parents of kids- goal is to assess transition knowledge so we can know where parents lack information to make informed decisions for and with their kids.


  • Getting children diagnosed earlier and looking at adult services
  • Barriers for those with IQs over 70
  • Individuals diagnosed after 22
  • Jinny spoke about her experience in trying to get services after being diagnosed after age 22.


  • we know autism is present at birth, it is not valid to deny services for someone diagnosed after 22.
  • Is this a case for what is in the DSM?
  • Children diagnosed early-concern is people diagnosing that don't have experience and did the people doing the tests meet the criteria for doing those tests. Physicians being approached to do this diagnosis. Are the people doing those assessments qualified?
  • Cari, we have been working hard for Medicaid coverage for ABA another thing is ABA providers approaching physician and saying we will do the SABA but we just need the diagnosis, so they get it. There are some concerns with this, that we need to work with and help empower physicians with this and people are really getting quality diagnosis and not diagnosed by someone who has a stake in this.
  • Marla- we have lots of kids with prescription diagnosis but never able to get the psychological testing. Can the kids start treatment if we have them on a waitlist to get the diagnosis? We have an onboarding problem, and this is a goal we would like to get with the act early group.
  •  We are still looking at the model of a team diagnosis with physician.
  •  Medicaid is really needed to expand these mental health clinics.
  •  Zoubida -What do the schools do between services between school and Medicaid - don't know if it will require a federal act. I have so many kids who are on a waiting list for these services
  •  Kristin- there is also disparity in wait lists within the state - some are going outside of state because they are closer. It will be hard to find all the places where diagnostics are occurring. * Stephanie says St Louis has a wait list of 12 months.
  •  Bill to get BCBAs license - the insurance coalition has done amazing work to move this forward.
  •  HFS filed a new state plan amendment to adaptive service - it's another form of SOA and was submitted awhile back and this was submitted, and we weren't aware of and weren't contacted that it was done.
  •  The administrative rules on this they are working pretty quickly on. HFS is to create a continuum of care not just ABA. ABA was addressed in the SPA with a 3rd option to become a behavioral health clinic, 4th delivery model that BCBA will be able to design and render without supervision of?
  •  We want to start getting enrolled while the rules are developed
  •  Intervention services is something new coming down in rules
  •  They are going to offer support training for providers especially in underserviced areas
  •  Age 7 under comprehensive care, over 7 -
  •  If late diagnosis than will need comprehensive care
  • to provide list of providers or have providers sign up to be in the listing
  •  We feel we have been able to accomplish with the ABA Medicaid services.
  •  SB406 ABA reporting bill to track young kids getting services without problem with access
  •  Licensure bill - Some concerns about requirements for BCBA but we can get updates through ILABA

 Act Early

  •  Cari- working with AA Pediatrics to look at barriers to early diagnosis and improve getting EI services. Expanding partnership to include their marketing team to increase educational component. Helping pediatricians to access ABA. Referring to quality agencies. How other state agencies work so we can adopt some best practices. Embedding initial training to home visiting EI providers to help families get plugged into the right services
  •  Cari are they also educating internal medicine/ family practice as many families in rural areas/ clinics do not have pediatricians in their clinics especially ones that take MCO's/ Medicaid.
  •  Cari trying to work with physicians and not having as much luck as we hope, we hope to also reach out to nurse practitioners and physician's assistants. Access to care is not equitable especially down state - try to reach out for education and training to try to improve the communication and training. We would appreciate Kristen's help in connecting.
  •  Might check in with CAP

 Adult Services

  • Survey of other states waivers:
  • Focused on two areas- person centered planning and flexibility of funding for those not serviced well in Illinois especially day services- options are limited to licensed providers in the states. Need for different types of services and be able to use that waiver funding the 1915c waiver is being used differently and Medicaid offers the I j k which offers more flexibility. The K version offers a higher match.
  • We are doing a deep dive into 12 states to see how they are doing it and present to Illinois to see as options in how we fund in Illinois.
  • Give some attention to the 1115 waiver on behavioral health, we need to understand what is in this waiver in regard what is needed for those on the ASD spectrum. 
  • Patti asked if someone is interested in a committee on this please contact us

Division Updates- (DD, EI, DRS, DMH, ISBE)


  • Next option to continue for children who need that extra option to boost, Legislation for more family engagement.
  • Updated procedure handbook and engage providers for preparing families on a broader spectrum.
  • Dana Weiner - appointed by the Governor, behavioral health issues. EI is its own division so we assume we will have a close relationship with this office. She is related to UI Chicago. During the press conference Autism was brought up and the task force might want to do some back-ground on this. Perhaps she would want to come to a meeting.


  • Offices are still working remotely


  • New 988 number for crisis as we develop the continuum. All NOFOs being reviewed and slated to begin July 16, it's not like 911 the 988 number is staffed by clinical trained professionals so they can resolve the situation. It's a cultural shift for dealing with crisis throughout the country. We have 590 which is mobile crisis team. Any time any point any where people can get relief for their issue. All levels and regions working on this.
  • Comment: I found a program on Autism, and we can access the program through mental health. CRSS is a big piece of 590 I can check on this Jinny if you want to contact this. It is a part of the suicide prevention but not just suicide.
  • Comments- the 988 is a knee jerk reaction
  • Constance - the whole 988 is part of a continuum of care in how we respond to crisis from emotional to suicide.
  • Do they have a feedback loop and was there any discussion of the ASD?
  • The 988 is for people in crisis regardless of what their issue.
  • Will there be an effort to educate the staff agencies and providers and the difference for ASD folks- they get stuck and chemically treated in hospital and sent back home. Is there going to be more training and support to those folks statewide. They are handled under a traditional medical protocol when it is not working for ASD, it's not always a good scenario they are treated as MI when they are not. There should be language about chemical restraint as they see it as a crisis, and they just want to bring it down.
  • Constance - you are talk about a particular provider and the crisis Jinny and Ruth Ann, it is statewide.
  • Mental health workers are not required to get training in DD.
  • Constance wants more information to take to her group in addressing this in the 988 group. Jinny and Ruth Ann to do that.
  • Ramiro- They first want to de-escalate something so no one gets hurt; we have to work on this. 

New Business

  • View Autism Task Force Website location
  • Comment: the DHS site is not accessible.
  • Response: The Illinois Information Technology Accessibility Act (IITAA) requires Illinois agencies and universities to ensure that their web sites, information systems, and information technologies are accessible to people with disabilities. While the Americans with Disabilities Act and Section 504 of the Rehabilitation Act already require the State to ensure accessibility, the IITAA establishes specific standards and encourages the State to address accessibility proactively. Link was shared with all members. IDHS: Illinois Information Technology Accessibility Act (IITAA) (
  • Training is open for 2022 

Old Business

  •  Ramiro went through his meetings some form of paperwork to show what has worked in other states.
  • The 3-year reevaluation - we need to let the legislation know they need to listen to us on these things not lobbyists etc. A real letter will hold some weigh and give us advocacy. The mean age to diagnosis is 6.5, and that is the time we are supposed to get re-evaluate? This falls on us.
  • Comment: Do you need a 3- year evaluation for speech and OT, the 3 year is really for ABA, we have to say what the letter of concern is clarified. If the therapy is working and you get assessed and improving - if you require less report than the child should get less because it is working. You can't give unlimited services lifelong.
  • I'm worried about the children cannot get the services- Medicaid
  • The 3- year evaluation is about the whole presentation of the child; those services of OT and speech should not be the whole address in this evaluation. There are other issues getting unraveled in the three years. Two issues here- isolate and draw a strong argument to develop for the three-year evaluation. Need for 3-year evaluation need for speech Look at this with a group of people
  • Not all kids have to have the autism diagnosis to benefit from services. All neurotypical children can benefit from therapies. Cass M wanted to get involved - appreciated all the info she received today.



Next Steps


2022 Calendar year schedule

  • Full Autism Task Force:

  • Thursday August 18, 2022, 10:00 A.M. to noon
  • Thursday November 10, 2022, 10:00 A.M. to noon
  • Subcommittee meetings prior to next full task force meeting:

  • Act Early:
  • Wednesday April 27, 2022, 1:00 PM
  • Autism Insurance Subcommittee:
  • Monday May 16, 2022, 11:00 AM
  • Monday June 20, 2022, 11:00 AM
  • Monday July 19, 2022, 11:00 AM
  • Monday August 15, 2022, 11:00 AM
  • Adult Services Subcommittee:
  • Thursday June 2, 2022, 11:00 AM
  • Thursday July 7, 2022, 11:00 AM
  • Thursday August 4, 2022, 11:00 AM
  • Autism Transition Subcommittee:
  • Wednesday May 11, 2022, 10:00 AM
  • Wednesday June 8, 2022, 10:00 AM
  • Wednesday July 13, 2022, 10:00 AM

Meeting Guidelines

Sessions will be recorded.

Please keep your audio on mute so we can hear speakers clearly and unmute to speak.

Announce your name before speaking.

Actively listen and engage as fully as you would if we were in person.

Please do your best to stay on topic!

Share information respectfully to promote understanding, collegiality and avoid misunderstandings.

Allow people to share their thoughts and ideas completely and avoid interrupting.

Strive for balanced participation share but be brief and mindful of others who want to share

Identify barriers to our work AND provide suggestions to overcome these barriers.