November 12, 2020, Illinois Autism Task Force Meeting


10am - 12pm


  1. Introductions
  2. Workgroup Updates

    1. Transition
    2. Insurance (ABA Medicaid update)
    3. Act Early
  3. Division Updates- (DD, EI, DRS,DMH, ISBE)
  4. New Business
  5. Old Business
  6. Announcements
  7. Next Steps
  8. 2021 Calendar year tentative schedule
    • Thursday February 11, 2021, 10:00 A.M. to noon
    • Thursday May 13, 2021, 10:00 A.M. to noon
    • Thursday August 12, 2021, 10:00 A.M. to noon
    • Thursday November 18, 2021, 10:00 A.M. to noon

*Meeting will be held via WebEx

Meeting number (access code): 133 110 2360
Meeting password: ghYu7QkJV87
To join by phone:
1-312-535-8110,,1331102360## United States Toll (Chicago)
1-415-655-0002,,1331102360## US Toll
please mute all phones when you are not speaking


November 12, 2020 10am - 12pm

I. Introductions:

  1. Autism Task Force:
    Name Organization Attended
    Dr. Kruti Acharya UIC-Act Early X
    Gloria Bean DHS-DD X
    Patti Boheme Little Friends Center for Autism X
    Amanda Brott TAP
    Stephanie Brown Autism Society, Southern IL
    Mo Buti Aiepi X
    Dr. Amy Cohen UIUC-Champaign
    Brian Dacy Life Tech X
    Dr. Rob Daniels Chicago Children's Clinic
    The Honorable Pete DiCianni Commissioner, DuPage Sounty Board, Parent X
    Tony DiVittorio Clearbrook X
    Theresa Forthofer Easter Seals-DuPage, Fox Valley X
    Ann Frieburg DHD-EI
    Dr. Karen Fried
    Candice Gizewski Behavioral Perspective X
    Christine Hammond DHS-OAS X
    Sherry Healey DHS-Employment First X
    Terry Herbstritt PACTT Foundation/Parent X
    Sherry Ladislas Trinity Services/Parent
    Dr. Molly Losh Northwestern University
    Dr. Elizabeth McKenney Southern Illinois University, Edwds
    Nkechi Onwuameze IBHE
    Matia Ovalle Grupo-Salto
    Zoubida Pasha Family Resource Center on Disabilities X
    Pasha Powers ISBE
    Dr. Megan Roberts Northwestern X
    Colleen Shinn Autism Speaks
    Ruth Ann Sikora Parent X
    Allison Stark DHS-DD X
    Sean Weldon DHS-DRS X
    Dr. Constance Williams DHS-MH
  2. Partners:
    Name Organization Attended
    Amanda Bean X
    Megan Burke X
    Meg Cooch The ARC of Illinois X
    Mary Dixon The ARC of Illinois X
    Janet Dysen X
    Amanda Estes X
    Mike Grady X
    Chelsea Guillan X
    Jill Hayden X
    Dr. Tamar Heller UIC X
    Laura Jaramillo X
    Dr. Chuck Jiongco X
    Mary Kelly X
    Wanda Malone X
    Amy Martin The Autism Program X
    Grania Mahoney Autism Speaks X
    Amy Pfister X
    Kia Olson BCBA X
    Lori Orr X
    Marla Root Insurance Coalition X
    Cari Roestel Act Early Ambassador LEND X
    Andrea Sagel Easter Seals DuPage X
    Dr. Cheryl Widman UIC, Parent X

II. Workgroup Updates

A. Transition:

  • We are working with EEOPD transition committee.
  • The ATF Transition subcommittee held a discussion on extension to age 26, talked to Michigan where they have this in place. Michigan stated it did not help them as much as anticipated, it just prolonged the situation- the schools ended up as mini adult ed programs. With everything going on we decided this was not an area we want to pursue at this time.
  • DRS/DD MOU: Sherri Healey presented. In 2013 a parent group put together a flowchart for services. What we are still finding is a lot of confusion on how the process works. So many avenues of supported employment. Looking at how we can update this and what kind of changes to get this out to educators and families. Sherri reviewed the flowchart.
  • Allison stated we are in the process of changing how DD is working with the job process. We are issuing bulletins next week. Sherri will coordinate with Casey Burke and see if we can work together on something that is an easy representation of the process.
  • Kathy Ward and IL Council on Developmental Disabilities really helped with this MOU, it outlines several deliverables that DD/DRS are committed to. Solidified the order of operations going through DRS fist- this is a federal requirement on funding. Mechanism for DD to have long term solutions and how that would be turned on.
  • Expansion of community rehab providers across the state so the break for long term services has more of a transition process.
  • Long term career counseling to understand what options are, we want to strengthen this.
  • Ways to support sheltered workshop to move toward competitive employment - this is a really a big transition for them.
  • We also need to collect data.
  • There is also the education piece for families. We feel the ISCs need training since they are the front door to services. Anyone on PUNs should know that DRS is a service for them. Want to make the process more seamless.
  • The task force asked how they can help in this process. We want to make sure when we make recommendations, they are in line that. Casey Burke is the employment person for DD - part time. DD position a website geared to employment. Recordings of two webinars. Sign up for the division DD comments and it is going live today.
  • IDHS: DDD Communications ( All collaborations are important in the next month's going forward
  • In the EEOPD we don't have transitional specialists in those meetings, we should be sure that all teachers be trained in transition. Training for teachers was just approved for 3 years, so it's unlikely we will have any input at this time. Paula felt there should be a real push at the administrative level.
  • Discussion:

Ruth Ann Sikora stated a voice needed to be addressed is the individuals that are post- secondary whose needs were not met in transition; they may have gone through college. 85% have a secondary degree but don't have a job or are working below their skill level. Need to give these persons a voice.

Cheryl Widman - pursuing education system to make sure teachers are trained in transition

Patti Boheme - initiative that include private/public/corporate services

Tamara Heller -The UIC project falls into what we are addressing. Post -secondary focus to getting a career, goal is working with employers. UIC has a 5-year grant from the department of education to develop a post-secondary employment - career experience certificate. We don't want kids to go to college and them just sit home. The grant will start next year. Inclusive- we have 1100 students taking classes with disabilities. Looking at interests of students. They will pay tuition coming in, we hope it will be covered by Pell grants later to become more affordable. Working with DRS, DD, high schools where they are coming from. Can be contacted.

Discussion about a culture of transition starting a lot younger in school. "Envision IT" at Ohio state Margo or Marko Izzo.

Zoubida Pasha - Question, are you considering collaborating with indicator 14 to capture data to help people out of the system.

Allison - I know EEOPD is looking at this to move students forward. Where our focus is now is more adults, to transition age kids. We see huge numbers of kids in sheltered workshop. 11,000 people in IL in sheltered workshops. The other group is individuals on the spectrum who are under employed. We don't have a strategy right now for moving forward on this.

B. Insurance:

  • ABA Medicaid language change.
  • Reviewing the letter draft now. Three states left to incorporate Illinois, New York, and Texas.
  • Provider bulletin allowed for the coverage. There are 26 providers in Illinois that meet the criteria to provide services and approximately 12,000-20,000 kids needing service. We provide solution in the letter.
  • The caseload restriction is also a barrier-can only collaborate with 8 registered technicians this would cause a problem, generally caseloads depending on the severity, can have a few providers for the same child.
  • We want to provide to the task force a chance to comment and then forward to HFS. Much of this information has been provided before.
  • The Autism task force has been working on this for 10 years. Judith pulled together many providers to look at what everyone was doing. Allison has gone to HFS in discussions on this. This is in motion and we still feel it is important to have a formalized letter. The Task force will send the letter and many groups who can agree with us and support us with the letter.
  • Discussion:

Marla- We are supporting providers getting through enrollment and Medicaid, we are having extreme challenges - we hired a Medicaid consultant to support us in this. Have sent questions up to the administrator. It's clear that the budget language did highlight that the practitioners be licensed or certified. Nobody enrolled as a provider, and we don't have a fee schedule yet. The enrollment type is very confusing. Many barriers on the provider side. Also introducing the behavior analysis to the Medicaid.

  • We will send the letter out to the task force as a vote to use the letter to ask HFS for changes and educate people.

C. Act Early committee:

(Cari and Kruti and Lori Orr)

  • Lori Orr is with Governor's office on early childhood development.
  • Grant from CDC for diagnosis during COVID
  1. Collaborating with home visiting services and EI to bring variety of different materials to families and what to do if you think there is an issue.
  2. Echo autism programs initiatives- identification of needs care coordination, interventions, educate and support that service delivery.
  • Act early- two priorities this year
  1. Improving ABA intervention for kids at risk and who might benefit, very few BCBAs credentialed and looking to identify why that is to improve ABA therapy.
  2. Reduce the time in EI to get the appropriate intervention as possible- improve the primary care and EI referral process to speed it up. When kids come into EI there is a scary amount of evaluations and looking for a triage evaluation to allow them to get more specific intervention to speed up the process.
  3. Lend trainees looking at these initiatives to see what works in other state. Kia Olson would like to be a part of this to look at the road blocks.

III. Division Updates (DD, EI, DRS, DMH, ISBE)

  • DD- Gloria Bean, any concerns Allison spoke earlier.
  • EI- None
  • DRS-None
  • ISBE- Parent project- variety info available on ISBE website can find searching for COVID, FAQ's as well as many resources and documents. One of the main projects is to attend meetings with the parent information centers in the state and parent engagement making sure information is being shared across the agencies and updating the parent webpage and we have a parent handbook, new for special education. Parent guide is on the webpage. Spanish guide is not up yet.
  • Discussion:

Question regarding Social worker involvement in IEP? In IEP meetings the caseworker usually runs the meetings.

There are federal regulations the LEA is specifically to follow and the persons who runs the meetings varies from school district to district. LEA determines the resources for the student. The Social worker is a part of the IEP team. The regulations stipulate who is to be at the meeting depending on the requirements of the students. Parents can get assistance and we are trying to provide information to them. Include those resources that are available on the website. LEA representative is responsible to make sure all regulatory needs are met.

Indicator 14 - one year after a student leaves high school there is information gathered. It is a sampling of students collected for ISBE. Paula has been a great resource for us.

IV. New Business:

  • We need feedback on the letter for ABA
  • Discussion on revising the comprehensive service committee regarding people who have transitioned out of transition - post 26 year old. Adult services- Cycle in and out, billing codes for providing services under. Contact Chris if you have an interest in this committee.
  • Comments on the COVID situation and getting kids diagnosed. We are doing diagnostics at Easter seals with modification. The Docs are seeing clients individually, so it is continuing. Combination of in person and virtual services.
  • Advocate children - a lot of telehealth ADOF, lot of different models but many are doing a provisional diagnosis for now. A lot of people using the CARS for diagnosis. Vanderbilt had a telehealth assessment.
  • Shannon Dyson autism program the impact is affecting whether in person or telehealth depending.

IV: Old Business:

  • None

V. Announcements:

  • Everyone stay healthy.

VI. Next Steps


VII. 2021 Calendar year tentative schedule

  • Thursday February 11, 2021, 10:00 A.M. to noon
  • Thursday May 13, 2021, 10:00 A.M. to noon
  • Thursday August 12, 2021, 10:00 A.M. to noon
  • Thursday November 18, 2021, 10:00 A.M. to noon