November 18, 2021, Illinois Autism Task Force Meeting

November 18, 2021
10am - 12pm


  1. Introductions
  2. Guest Presentation
  3. Workgroup Updates
    1. Transition
    2. Insurance
    3. Act Early
    4. Adult Services
  4. Division Updates- (DD, EI, DRS, DMH, ISBE)
  5. New Business
  6.  Old Business
    1. ABA Medicaid Coverage
  7. Announcements
    1. Ethics and Harassment training
  8. Next Steps
  9. 2021 Calendar year schedule
    1. Full Autism Task Force: Thursday November 18, 2021, 10:00 A.M. to noon

Autism Task Force Sub-Committees:

Act Early: August 25, 2021 1:00 to 2:00, September 22, 12:00 to 1:30, October 27, 1:00 to 2:00

Adult Services: September 2, 2021 11:00 to 12:00, October 7, 11:00 to 12:00, November 4, 11:00 to 12:00

Transition: September 8, 2021 10:00 - 11:00, October 13, 10:00 to 11:00, November 10, 10:00 to 11:00

Insurance: September 13, 2021 11:00 - 12:00

Meeting Minutes

*Meeting was held via WebEx


Task Force Present:

  • Dr. Acharya Kruti UIC - Act Early
  • Bean, Gloria - DHS-DD
  • Boheme*, Patti - Wellspring Associates
  • Boheme, Sasha - Hinsdale Township Highschool
  • Brown, Stephanie - Autism Society, Southern IL
  • Buti, Mo
  • Dr. DiMateo, Tom - Wellspring Associates
  • Frieburg, Ann - DHS-EI
  • Dr. Gamucio, Ramiro - Parent
  • Hammond, Christine - DHS-Task Force Liaison
  • Healey, Sherry - Parent
  • Herbstritt, Terry - PACTT Foundation/Parent
  • Jiongco, Eugene Charles - Behavioral Perspective
  • Olson, Kiya - ASPB Therapy Pathways
  • Pfister, Aimee - DayOnePACT
  • Powers, Paula - ISBE
  • Roberts, Megan - Northwestern
  • Sikora, Ruth Ann - Parent
  • Weldon, Sean - DHS-DRS
  • Williams, Constance - DHS-DMH

*Task Force Co-Chairs

Partners Present:

  • Cohen, Barb
  • Faich, David
  • Estes, Amanda - Autism Collective
  • Kelly, Mary - The Autism Program
  • Reuter-Yuill, Lilith - Southern Illinois Carbondale
  • Wagner, Kristin - DHS-DRS
  • Davis, Jinny
  • Johnson, Christine
  • Hamer-Sinclair, Mariel
  • Dixon, Mary
  • Sagel, Andrea
  • Mercer, Kimberly
  • Hanson, Kristy
  • Gharst, Kristin
  • Shawler, Lesley
  • Kedryna for Rich Bobby Kat
  • Diggins, Bill - IG Guest Presenter
  • Wright, Charles - IG Guest Presenter

Guest Presentation-Inspector General Bill Diggins

Presentation to share what OIG does: 

  •  Rule 50- overview of what OIG does administrator rule
  •  Narrow focus of abuse and neglect related to DD and MH
  • The Ligas consent decree in 2007 changed and OIG expanded with new individuals moving to CILAS and community- based homes.


  • Peter Neumer is the Inspector General 
  • Cover 5 investigative bureaus
  • Intake hotline o Average 8000 phone call per year and determine if it is abuse and neglect under rule 50.
  • Jurisdiction of all community agencies funded by the state -428 agencies across state approx. 3000 plus actual sites. We do not do substance abuse agencies.
  •  If the allegation is in private home it is referred to police
  •  ICFs is referred to public health.
  •  Children under 18 referred to DCFS
  • 14 state op, 7 MH and 7 SODCs
  • CILAS are being opened in the far reaches of the state of Illinois. The travel can affect timeliness. Since 2010 cases have increased by 50%. Neglect increases by 95%- many can be due to medical issues. Many residents are moving to the community with higher medical needs.
  • Financial fraud cases can take a lot of time
  • Case- loads vary between types of investigations
  • Goal is to complete investigation in 60 work- days although we have not met that about 50% are met in this time frame. We are constantly reevaluating our process and we are slowly increasing our average.
  • For an incident at SODC or CILA. Report to hotline and the investigation will start after review.
  • Multilevel review if a case is reconsidered. * Case outcomes can be affected by union and labor grievances
  • We determine an outcome we do not have a say in what actions are taken to the employee involved in the case.
  • We can be called to testify at hearings, grievance hearings.

Question - trends are going up, is data collected especially on the ASD spectrum or based on disability like if there is an uptick in a disability?

  • Data is broken down by jurisdiction not based on the disability but we are in the process of redoing our data and maybe we will be able to break it down further.
  • Not involved with the child abuse data base and that is probably best checked with the DD database.
  • Under 18 - we only look at the chronological age for investigation not guardianship.
  • Ability to communicate and report - these weigh heavily on guardians. Choate is one of these things. Individuals can't express what has happened and seems to go with the agency employees in favor.
  • We understand there are very few people who can witness with these situations. We are working on monitoring and it is a problem when it comes to investigation. Many times we know something but can't prove it. Out recommendations are very strong that there needs to be follow- up on to make sure that what we found does not lead to more abuse and neglect.

ICDD question: who is responsible once A&N is reported that there is no retaliation to the reporter and how they can feel safe and not have to deal with ongoing repercussions?

  • We don't have direct oversight but rule 50 and the MH code requires that in the facility the accused staff has to be away from the individuals they serve. The facility has jurisdiction on the retaliation piece. There are pieces we do try to be involved. In our training we provide facilities with direction for appropriate services offered after an incident or allegation to help with the trauma of being the victim. Part of our role is to make investigation we are not perfectly positioned to make policy changes.
  • The investigators are trained on communicating with the individuals. They can also bring in a communication specialist who is not involved in the case. Anyone here who has a problem with this can contact us. It is very helpful if you let us know so we can address the issue.

Comment - Maybe we could make recommendations on the communication piece. There are a lot of barriers and it's a tough area.

Workgroup Updates


  • Working on the survey and getting close to getting it complete - we have worked hard on this to get a knowledge base of parents. We are close to getting this done. We are going to start out on electronic survey to access as many parents as we can. Kids of all ages. Any organizations to getting the survey out. We are looking at translating in Spanish. For parents who have kids in school and graduating. ISBE list of special needs, list of statewide co-ops and ROEs and to all other students. Mary is happy to post on our program.


  • Trying to identify areas we are looking at. Began breaking down areas of focus and narrow this done.
  • Jinny the insurance committee was completely focused on children and I was upset. We need to get adults covered. Please send Pete and Patti an email on your ideas. We are all passionate about different things and we need to iron these things out as a team. Pete has made the recommendations to cut it down to three things, Ruth Ann recommended that Constance be part of this meeting to talk about the Mental health aspect. Constance said she is always available.
  • ABA - switch of focus to board certified analyst licensed. The ability to offer this service is due to cost and there is not code to pay for the psychologist and no one is going to be able to due to this cost.

Act Early

  • Sending out a survey to best address the communication barriers to access to services. The other things with EI to identify autism supports for children, In the EI and waiting for services as they have not been diagnosed. Reaching out to national technical assistance.

Adult Services

  • Employer engagement and provide feedback to DD regarding community day services and workforce development unit. They have only been in existence since 2019 and trying to provide employee engagement and we can make feedback on how we can improve services for those on the autism spectrum.
  • Meg Cooch spoke with us on the waiver's rules and state rules and the barriers. We are providing feedback on how we can increase capacity on how we serve people in day programs. Many in day programs with needs that are not being met. We presented with the living with autism by the ARC.
  • Jinny-Folks with actual autism need to be more involved.

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


  • Autism training and technical assistance project 2 new webinars that have been held Autism on the job, Entrepreneurship, and autism
  • Secondary transition group at ISBE currently working on the NTACT in collaboration with the Illinois center for transition. Compiling everything on transition in the state. We update ISAC so they are aware of what is working as well. I will put up the link in the chat.


  • 988 number national crisis number July next year for suicide and emotional distress.


  • We are now our own division and we are in the process of building this. Kristin Chernawsky is the division director. We will expand the bureau staff - we haven't grown in 20 years so this is great news

New Business

  • Providing more help to mental health on autism, needs to be on agenda in the future
  • Someone to speak on the 1115 waiver DD does an enormous amount of training and it is virtual
  • Patti there is very little trainings on autism ICP Illinois crisis prevention network.
  • Jinny billing is not allowed under my autism, I would like to see the removal of the autism age cap
  • Behavioral waiver discussion at the next meeting.

Old Business

ABA Medicaid Coverage


  1. Ethics and Harassment training
  2. Advisory Group- If we have things that come up that we need more input from our advisory group send out the role for those people.

Next Steps


2022 Calendar year schedule

  • Full Autism Task Force:
  • Thursday February 10, 2022, 10:00 A.M. to noon
  • Thursday May 12, 2022, 10:00 A.M. to noon
  • Thursday August 11, 2022, 10:00 A.M. to noon
  • Thursday November 10, 2022, 10:00 A.M. to noon

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