November 14, 2024, The Autism Task Force

Illinois Autism Task Force

November 14, 2024

10:00 AM to 11:30 noon

Meeting Recording:

Meeting Recording

Meeting Minutes:

Illinois Department of Human Services

Autism Taskforce Meeting

November 14, 2024

10am - 11:30am

Reminder the meetings are now 1 1/2 hour meetings. We will only discuss agenda topics. If you have a topic for a meeting, please submit it to the co-chairs within a reasonable amount of time in advance of the meeting to be added to the agenda.

  1. Introductions

    • Members Role Call:
    • Dr Kruti Acharya - Present
    • Patti Boheme - Present
    • Sasha Boheme 
    • Amanda Brott , Shannon Dyson - Present
    • Stephanie Brown
    • Mo Buti Present
    • Dr. Tom DiMatteo
    • Theresa Forthofer, Andrea Sagel - Present
    • Dr. Karen Fried
    • Dr. Ramiro Gumucio
    • Sherry Healey - Present
    • Terry Herbstritt - Present
    • Sherry Ladislas - Present
    • Kiya Olson - Present
    • Zoubida Pasha
    • Aimee Pfister - Present
    • Cari Roestel - Present
    • Colleen Shinn Kelly Headrick - Present
    • Ruth Ann Sikora - Present
    • IDHS/State agencies:
    • Christine Hammond
    • Sarah Schroeder- DMH
    • Sean Weldon
    • Ashley Kjos
    • Jay Bohn
    • Danielle Harsy- DD Clinical Services
    • Kristin Wagner
    • Nkechi Onwuameze
    • Paula Powers
    • Benny Delgado EI
    • Partners:
    • Beth Carey
    • Justin Houcek
    • Kristin Gharst
    • Jennifer Simpson
    • Holley Raftery
    • Emily Mehta
    • Dawn Sikora
    • Amy Levin
    • Marla Root
    • Wanda Malone

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

    1. DD:

      1. Clinical services:

        • Insulin pumps for community based.
        • De-escalation training reimbursement expenses related to de-escalation training to community providers.
      2. PUNS- working on early notification for July selection. Letters going out mid- December. Budgetary questions to the budget which will be finalized in February.
      3. No updates, focused on Medicaid eligibility and presentations to our stakeholders.
    2. DMH:
      1. Systems of care with schools - working on curriculum development for students who are neuro-divergent.
    3. DRS:
      1. Recently updated admin policy regarding all training services, waiving the financial services - waiving the ctp so more individuals will be able to take college programs that lead to a certificate.
    4. EI:
      1. Professional development offerings for ASD are being offered.
      2. Still addressing the workforce issues internally.
      3. Will post publicly- people will see the cost of the workforce to service kids. 118 new service coordinators over the last couple years. Beginning to reduce caseloads - continue to support our providers in this effort. 500 people going through the process of credentialing.
      4. Created the Family rights videos. Link in chat and we can begin. Efforts still ongoing to stabilize the system.
      5. Postcards for referrals related to family rights letting people know about the family rights and advocacy tips If they don't hear this from a service coordinator. It informs of all their rights.
    5. ISBE:
      1. A+ project is on the website as resources related to behavioral needs and communication disorder. Talks about the goals of the project, supporting the meaningful environment.
      2. ATT project - training and support to stakeholders in providing equitable treatment to ASD.
    6. Legislation:
      1. DD is cognizant in gaps in service of the autism community, there are no updates in legislation at this time.

  3. Workgroup Updates (10:30-11:00)

    1. Transition:
      1. Reviewed the Priority template.
    2. Act Early:
      1. Moved the 4th quarter meeting, working to identify our priority template. Insurance is working on the diagnostic question. We are open to hearing from the Act early goals. One concern we have is that there is new division and greater question of how do we liaison and that services are included in this new division and how we are connected.
      2. ICAP- create series of webinars on referring to EI and getting new services started. Videos would be great for our pediatricians.
    3. Adult Services:
      1. We are focusing on PCP in adults in CILA, community, day services and very much individualized. Problems accessing services and want to look at reason for this. Compose a survey to ask questions of providers as well as individuals -in where the issues are in getting services.
    4. Insurance:
      1. Main goal was cutting down the wait time for diagnostic assessments. First step is connecting to services. Can't move forward without accurate diagnosis.
      2. Need for reevaluation every 3 years which is not required in every state. It creates a bottleneck.
      3. Cost of reimbursement is low so many not willing to do assessments.
      4. Looking at ways to access the initial assessment first - who does the initial diagnostic, assign a social worker to help families through.
      5. We want to tighten this up so next year we can pose this to the Secretary.

  4. New Business

    1. Spotlight: Justin Houcek
      • Diagnosed at 47 right after divorce could not communicate well.
      • Justin described his challenges and experiences, how he has managed and what successes he has had. He created Autism and me in 2019 and as made it his life's work to help and advocate those who with ASD.

  5. Old Business

  6. Current Topics for the ATF

    1. If you are an ABA provider the autism insurance coalition is doing a cost survey the goal is to create a white paper on how services are delivered and the cost.
    2. Suggestion to bring someone in to talk about service animals more knowledge for the ASD population, Jennifer Simpson has a resource.
      1. Difference from emotional support animals, there's a lack of employers who want to support people who need service animals. We need to build a better foundation through the ATF and how a service animal can help our people.
      2. There is a lot of push back in work settings for service animals.
      3. Misperception between emotional support and service dog and there is a psychiatric dog.
    3. We have a changing administration that is not going to be as liberal with its funding to the state. Whatever we are pursuing we have to focus as we may not have as many pathways.
      1. With changes in admin as a special needs parent and the impact of dismantling the department of education. We need to keep this in the forefront as a parent I am truly concerned.

  7. Announcements

    1. TAP - hybrid conference.
    2. Marla - Build relationships with the MCO organization we should split a booth with the task force.

  8.  Next Steps

    1. We used to have greater involvement from our legislative staff, can we begin to reach out. Extend invites to legislators.

  9. 2024/25 Calendar year schedule

    1. Full Autism Task Force:
      • February 13, 2025
      • May 8, 2025
      • August 14, 2025
      • November 13, 2025
    2. Autism Insurance Subcommittee:
      • Monday November 18, 2024, 11:00 AM
      • Monday December 16, 2024, 11:00 AM
      • Monday January 13, 2025, 11:00 AM
    3. Autism Transition Subcommittee:
      • Monday November 18, 2024, 10:00 AM
      • Monday December 16, 2024, 10:00 AM
      • Monday January 13, 2025, 10:00 AM
    4. Adult Services Subcommittee:
      • Thursday December 5, 2024, 11:00 AM
      • Thursday January 9, 2025, 11:00 AM
      • Thursday February 6, 2025, 11:00 AM

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.