November 10, 2022, Autism Task Force

The Illinois Autism Task Force

November 10, 2022, 10:00 AM to 12:00 PM

  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
  5. Old Business
    1. Training to be complete by 12/30/22
  6. Announcements
  7. Next Steps
  8. 2022 Calendar year schedule
    1. Full Autism Task Force:
      • Thursday February 9, 2023
    2. Autism Insurance Subcommittee:
      • Monday November 21, 2022 11:00 AM
      • Monday December 19, 2022 11:00 AM
      • Monday January 23, 2023 11:00 AM
    3. Adult Services Subcommittee:
      • Thursday December 1, 2022 11:00 AM
      • Thursday January 5, 2023 11:00 AM
      • Thursday February 3, 2023 11:00 AM
    4. Autism Transition Subcommittee:
      • Monday November 21, 2022 10:00 AM
      • Monday December 19, 2022 10:00 AM
      • Monday January 23, 2023 10:00 AM

Meeting Recording

November 10, 2023 recording

Meeting Minutes:


  • Task Force Present:
  • Patti Boheme
  • Sean Weldon
  • Andrea Sagel
  • Sarah Myerscough- Mueller
  • Kiya Olson
  • Kristin Wagner
  • Sherry Healey
  • Ramiro Gumucio
  • Paula Powers
  • Kimberly Mercer Schleider
  • Terry Herbstritt
  • Sasha Boheme
  • Tom DiMatteo
  • Christine Hammond
  • Partners:
  • Bonnie R
  • Kat Kedryna for(rich Bobby)
  • Mary Kelly
  • Jinny Davis
  • Alison Kerans Nurse Practitioner
  • Mariel Hamer-Sinclair
  • Marla Root
  • Wanda Malone

Workgroup Updates

Transition- Completed the Survey to look at parent-based knowledge and understanding. Thank you to the transition team. Currently with MIS to get it put up on the website. There will be a link on the DHS website. It is important to get it to as many parents as possible. Need ideas to best get it out to parents.

Insurance- Focus on early diagnosis, in process of collecting all the providers across the state, we are looking at wait lists and capacity. Once we have the list completed, we will be asking for your input to add who you know. Preliminary glance we have a lot in the Chicago areas -outside of that it becomes scarce. Our goal is to get this information and map it out and see how we can look at these barriers to get individuals diagnosed. Not just young but we have so many teens still that are diagnosed late.

Marla- ABA updates, no real updates the third option delivery is not out yet (phase 3) which would allow the BA to work independently. People are struggling with the other delivery options. We asked HFS if there a way to which to roll out the coverage through a provider notice so we can start providing to families. The coverage is authorized and ready to go but it's being delayed because they are authoring other coverage in. We are encouraging families to file appeals.

Question: Do we know how many people are getting Medicaid ABA

Answer: No but guess 400-500, but many on a waitlist to serve

The BA licensure bill passed there is a section on corporate, the BA to be the only owners of those companies-there are groups working to try to get that language changed. There are ABA providers owned by SPs, and families, so they are not in compliance. Don't expect impact for another 20 months.

Focusing on the early diagnosis our adult committee we do not have leadership in place. I do think some of those issues are being addressed in the adult service committee

Act Early- No Report

Adult Services- We have been looking at what other states are doing and looking at recommendation for DDD in a format that is easy to follow. We are seeing that the 1915k waiver might be a good fit for Illinois, its focused on self- directed services and includes a higher match from Medicaid to provide more choice. The last meeting, we spent a lot of time on the settings rule it really ties in with what we are working on and hope it will be beneficial to the state.

Sarah- we have a working group on the support's waiver specifically for the transition age group. Focused on 18-25 not pulled from the PUNS list. More of what you are talking about self-directed, flexibility, therapies, camps, employment. Not residential. We are looking at the waivers and what would be best.

Sherri- having flexibility in how to use the funding is key

Patti- Kids with autism have a need for support but different needs from other disabilities.

Sherri- if we can break down the silos for autism with MH needs.

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

DD- Sarah Myerscough Mueller

Person centered planning: Partnered with UIC report on PC planning related to the settings rule. As recommendation from the report, at the beginning of Oct implemented the discovery tool, a new tool for implementation strategy to achieve more of the recommendations.

Setting rules: March 2023 deadline, 2100 validation on CILA and day services in summer to early fall. Working on compliance action plans for those places to come into compliance. We are playing catch up and hoping we will get all providers in compliance

Home-based: 1)information and guidance bulletins related to increase to SSI January 1, to families can work with providers to get more services. 2) info bulletin creation of backup plan for homebased planning - there is a plan in place in case that individual cannot provide the service, so a backup plan for an individual to receive services.

Last week a change we are making related to children's home-base services for families with children at 18 or above. We don't have to go through waiver amendment, hope families will be able to find personal support workers or natural supports and not struggle to find support.

ICDD highlighted settings rule: Medicaid pays for home and community services. Want to make sure all the money is spent in places that don't look like institutions. Home and

Community based dollars should go to home and community settings. To receive funding have to make sure its not institutional and make choices and control what you do with your day. Working since 2015 regarding this rule and what people should be expecting. The deadline to comply is March of 2023.

  • Question1: How is it we continue to go back to the medical model
  • Answer1: We are moving away from the medical model, it's a pretty significant process. We still have to have ways to review this and a standardized template for monitoring.
  • Question2: Ambitious plan with strong goals for community based. Will be a heavy lift for many providers with shared bedrooms and work schedules. How do you see this happening and what are the consequences?
  • Answer2: For us to identify to providers what the compliance issues are. We are partnering with the council to do TA. For sites not compliant there will be a process for transferring as we will not receive Medicaid match.
  • Question3: Are we looking for changes in financial structure for the high need individual
  • Answer3: the CILA rate structure is to allow the ICAP and HRST to influence the rate that an individual gets so if a person has higher support needs the Cila calculator will provide a higher rate for that individual. Hope this will provide for better services for people with higher support needs. Also, within community day services - this year we are working on a medical behavioral add on in future years recommendations. There is a process for additional support staff.

DRS: Serving customers both virtually and in the community, productivity has increased during Covid - response time increased. Looking at strengths as well as functional. We have an online referral which is good because it has a tracking mechanism.

DMH: No report

ISBE: (Paula) Share technical assistance and professional development through the ISBE,

Projects - autism professional learning and support at the ISU to assist ISBE with behavioral needs specifically related to autism - creating a professional learning community for educators and families. Increasing the access and inclusions for schools and communities and meaningful involvement. Using high impact and evidence practices with coaching. I will link it in the chat box

ATTA-100% funded through a grant. Development and recent resources in their transition from secondary education.

Illinois Assistive Technology Program- free training opportunities for professionals and families or groups and can be customized. Introduction to AT, AT and accommodations for education and employment. Policies and advocacy. Implementing best practices.

New Business

Please contact Christine if you would like to be added to a committee.

Old Business

Training to be complete by 12/30/22 Chris will send out a training link.


People are looking for psychiatrists, Samara care has a number of, and they have some openings right now and capacity. Only taking blue cross right now but we are looking to expand on that.

Clinicians needs ADOs we will have 3 virtual trainings; you can go to TAP website and sign up

Autism symposium Wednesday April 5 and virtual 9-3. Research across tap network

Assist training in the spring to help parents with transition topics- its virtual, highly recommend for families.

Ramiro cautionary tale that affected my family and my son - In September he had an emergency surgery. I was lied to over the phone by surgeon saying that he cannot be put asleep, they did the surgery in the ER. I advocated for my boy; I was dismissed as a physician. I was refused, as are our children with autism dismissed. I am teaching right now on disabilities. They gave him anesthesia with an adult care hospital and not pediatrics. None of us as parents should ever have to encounter an ignorant staff member that dismisses our families' disabilities. They told me you can deal with it on a civil rights issue. I hopefully be on CNN to discuss it. I joined so we can give our community a voice.

Next Steps


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