May 16, 2024, The Autism Task Force

Illinois Autism Task Force

May 16, 2024

10:00 AM to 12:00 noon

Illinois Department of Human Services

Autism Taskforce Meeting Minutes

  1. Introductions Role Call 

    • Members:
    • Dr Kruti Acharya 
    • Patti Boheme - Present
    • Sasha Boheme 
    • Amanda Brott Shannon Dyson - Present
    • Stephanie Brown - Present
    • Mo Buti 
    • Dr. Tom DiMatteo
    • Theresa Forthofer, Andrea Sagel - Present
    • Dr. Karen Fried
    • Dr. Ramiro Gumucio
    • Sherry Healey 
    • Terry Herbstritt - Present
    • Sherry Ladislas- Present
    • Kiya Olson - Present
    • Zoubida Pasha
    • Aimee Pfister Present
    • Cari Roestel - Present
    • Colleen Shinn 
    • Ruth Ann Sikora - Present
    • Agency Partners:
    • Christine Hammond
    • Sean Weldon
    • Lisa Betz
    • Kristin Wagner
    • Danielle Harsy
    • Daniel Abankwa
    • Paula Powers
    • Benny Delgado
    • Partners:
    • Beth Carey
    • Tamar Heller
    • Susan Agrawal
    • Sara Beland
    • Jennifer Simpson
    • Justin Houcek
    • Adriana
    • Kiya reviewed the meeting guidelines.
    • Discussion on Task Force members and Open meetings.
    • The goal is for everyone to be aware of the expectations of members, creating structure and help to have positive tangible outcomes.

  2.  Division/Agency Updates- (DD, DMH, DRS, EI, ISBE)

    1. DD:
      1. Expansion of the stabilization services - DD will be increasing the number of homes as well as lengthening the timeframe in which supports are provided. Currently, eight homes provide services for up to 90 days. Expansion will allow providing stabilization services for up to two years, as needed, and an increase in homes to be able expand the number of people receiving services.
    2. DMH:
      1. Beacon system - New front door for children's mental health, will go live this summer. Three resource coordinators on board and two are clinical specialist.
    3. EI:
      1. Professional development offerings 52 1/2 hours available to support professionals supporting neurodiverse children.
      2. About 22 1/2 are sponsored by EI training program.
      3. 30 hours other training supported outside that is for credit by other professionals, behavioral analysts, all different kinds of professionals that give training to our professionals - wrap around support for professionals.

  3. Workgroup Updates 

    1. Transition:
      1. Just under 390 responses for parents. Currently compiling information and how we will go about using this.
    2. Act Early:
      1. Build awareness on how to access diagnostic and therapy services. Working with American pediatrics. Trainings held and recorded on website on how to access services. Working on continued awareness building.
    3. Adult Services:
      1. Prioritize aging parents who cannot access CILA services as there is no places available.
      2. Person centered services- can't access small day services and wanting more choice.
      3. Collaborate with creative housing network - they are specific to DD focused on person centered planning and homes not done in the traditional fashion.
      4. We have a tsunami of families with aging parents who are going to need services: 14,900 people on Puns list, 5043 approved for residential but there are no openings. Illinois is the 49th state as far as funding goes for people with DD, Illinois is the highest in homes with 7 people or over.
    4. Insurance
      1. Looking for ways to get individuals diagnosed. We don't have the ability to get all the data we need. We brought this to the secretary that we need assistance to get this information.

  4. New Business

    1. Patti reviewed the meeting with the Secretary.

  5. Old Business

    1. Advocacy day at the capital recently, we received the proclamation from Governor's office awareness to acceptance and participated with the dignity in pay day. We had great participation across the state. Many self-advocacy folks spoke.
  6. Current Topics for the ATF

  7. Announcements

    1. Discussion:
      • Our lived experiences -on paper we are meeting the needs, but we are not. We don't have the tools we need to give the information to the state- we don't have the time or access to do the work.
      • What can we provide as the task force to mitigate their barriers we face every day - it is a system question for us where do we pose these questions.
      • Getting the resources so we can put our lived experiences into action. Numbers are very important. In order to move the needle and to legislators we need data and stories. I think the department can give us this they have the time and funding. What do they need to begin to start changing the system.
      • So many of our autism barriers are insurance. We need someone under the umbrella to address this issue. We have a hook to start looking at all these systemic problems in the future.
      • Prioritize and target.
      • We can begin by getting the legislative work group - doing witness slips. The legislator I have is incredibly receptive. Il is becoming more responsive.
      • We are looking at our structure and how to incorporate.
      • These discussions are never brought to the full committee.
      • There is a lot more movement to recognizing needs for diagnosis and benefits of ongoing services. Conversations nationwide on how people are evaluating/assessing diagnostics.
      • I wonder if a MD feels if they are diagnosing the major issue then all else will take care, it is a rising tide.
      • Education is key amongst pediatricians for recognition and understanding. Educating on the spectrum schools, therapists… Hopefully diagnosis at an earlier age. Legislators need to get educated.
      • What do we want vs what can we start with- long wait for all different services and finding quality professionals. Getting people onboard from the state level. The people who are the voices bringing these things forward. What is going to impact the most.
      • The system did not grow for 25 years, what would be done differently if it was understood better.
      • We all agree that there is a lot more nuance to the diagnostic process.
  8. Next Steps

  9. 2024 Calendar year schedule

    1. Full Autism Task Force:
      • August 8, 2024
      • November 14, 2024
    2. Autism Insurance Subcommittee:
      • Monday May 20, 2024, 11:00 AM
      • Monday June 17, 2024, 11:00 AM
      • Monday July 15, 2024, 11:00 AM
    3. Autism Transition Subcommittee:
      • Monday May 20, 2024, 10:00 AM
      • Monday June 17, 2024, 10:00 AM
      • Monday July 15, 2024, 10:00 AM
    4. Adult Services Subcommittee:
      • Thursday June 6, 2024, 11:00 AM
      • Thursday July 11, 2024, 11:00 AM
      • Thursday August 1, 2024, 11:00 AM

Meeting recording:

Meeting Recording

Meeting Guidelines:

  • Sessions will be recorded. The intention behind recording is so that co-chairs, DHS representatives, and board members, upon request, may review and reference any content that was discussed during a meeting.
  • Mute your microphone. This will allow other members to clearly hear the voices of others. In the event that a microphone is not muted, when an individual is not actively speaking, co-chairs or DHS representatives reserve the right to mute the microphones of others.
  • Announce your name prior to speaking. This will allow all individuals to know who is actively communicating.
  • Actively listen and engage. It is expected that individuals attending meetings have their camera on as possible. and contribute through verbal expression or in the chat box so all ideas are heard.
  • Stay on topic. The co-chair will follow the pre-made agenda to ensure there is sufficient time to discuss all necessary topics. Therefore, it is necessary that all attendees stay on the topic that is on the agenda. Please hold new topics for discussion until the 'new business' section of the meeting.
  • Be respectful. Individuals that attend the meetings have varying backgrounds and opinions, all of which assist in having a well-rounded group for the furtherance of our goals. Therefore, it is necessary to refrain from interrupting, raising one's voice, name calling, or condemning other points of view. In the event that you disagree with the opinion of another, please utilize this as an opportunity for open curiosity and ask additional questions.
  • Keep comments concise and balanced. Avoid repeating comments that have already been shared. Summarize the main points and ideas of a thought, in effort to allow sufficient time for all parties to share and contribute. Co-chairs and DHS representatives reserve the right to conclude discussions and additional comments early, if necessary, in the interest of time.
  • Be constructive. When identifying barriers to progress please have suggestions on how to overcome barriers.
  • Raise your hand (Virtual Meetings). In effort to keep things orderly, and to ensure everyone has the opportunity to share, please raise your hand and wait to be called on.
  • Time limit to topics. There may be instances when, in the interest of time management, not everyone who wishes to share may have the opportunity to verbally share. If you are not directly called upon to verbally share, please place comments in the chat, which will be read and addressed later by co-chairs and DHS representatives.