November 16, 2023, The Autism Task Force

Illinois Autism Task Force

November 16, 2023

10:00 AM to 12:00 noon

Minutes

  1. I. Introductions

    • Task Force
    • Dr Kruti Acharya 
    • Patti Boheme - Present
    • Sasha Boheme 
    • Stephanie Brown 
    • Mo Buti 
    • Dr. Tom DiMatteo
    • Theresa Forthofer - Present- Andrea Sagel
    • Dr. Karen Fried
    • Dr. Ramiro Gumucio -Present
    • Sherry Healey - Present 
    • Terry Herbstritt 
    • Sherry Ladislas 
    • Kiya Olson - Present 
    • Zoubida Pasha
    • Aimee Pfister 
    • Cari Roestel 
    • Colleen Shinn 
    • Ruth Ann Sikora - Present 
    • Agency Partners:
    • Christine Hammond
    • Sean Weldon
    • Tonya Piephoff
    • Sarah Schroeder
    • Kristin Wagner
    • Partners:
    • Mary Dixon
    • Shannon Dyson
    • Christine Johnson
    • Justin Houcek-ASD with me
    • Gina Nixon
    • Eric Ross
    • Bonnie R
    • Cassie M
    • Verma Smith
    • Kristn Gharst
    • Mary Kelly
  2. Division/Agency Updates- (DD, DMH, DRS, EI, ISBE)
    1. DRS- Kristin finalize IGA with state board of education at legal for both, DRS and ISBE we will create documents to roll out and offer sessions statewide and expectations of that.
    2. Illinois Center for Transition and Work (ICTW) put out a transition guide.
    3. DMH- Work with school age mental health and transition age (25ish), supportive employment and education w/transition, ties with DRS working on. Also working on recovery support specialist working on training and education for them. Individuals we serve likely have a dual diagnosis.
    4. DDD- Tonya traveling the state to see all our services including institutions and providers. Visited the Hope center. New incentives to communities with focus on smaller living units $6000.00 incentives for better personal space. (one time incentive focused on 3 bedroom homes occupied by one person). This also allows the purchase homes to be easier.
      • The DSP wage distribution has been released.
      • Transformation phase of choate- 24 individuals have transitioned, trying to provide options so they have choices.
      • Nursing hours increase to be able to have providers meet more medical needs.
    5. ISBE-Promoting the transition survey. Expansion of two new behavioral coaches and online behavior training modules. On our website we do have the autism college and career link
      • Autism conference held in April and going to have one this year looking for additional groups as we expand the conference.
  3. Workgroup Updates
    1. Transition: Survey responses 217 English, 3 Spanish
    2. Act Early: Working with Lend hospitals to get information to places where parents are.
    3. Adult Services: Survey to adult services committee, priorities for 2024
    4. Insurance: Across the state for all people providing diagnosis- capacity across the state and wait lists.
  4. New Business
    • Co-chairs meeting with Tonya Piephoff on Tuesday
    • Reviewed slides
    • Discussion -
    • Medicaid did not accept diagnosis, it is an obstacle to treatment, kids linger in emergency rooms and can't get a bed because of the coverage. There are no downstate psych hospitals. Have to go to Tera Houte, St Louis, Champaign, and Springfield.
    • A parent discussed their 5 y.o. in ABA, it is the second time they had to change ABA providers. Insurance no longer covers as the provider decided not to take Medicaid. Went to Shirley Ryan to get a safety bed - it took a year between the medicaid, manufacturer, and the Provider. The discrepancy on what Autism is and the need with Blue Cross, so much frustration and confusion. The only option to tell parents is to get a reimbursement which some parents can't afford. They suggested that Social Security is an option.
    • Families can't navigate this to find providers that are covered by insurance. Single case agreement.
    • ISC collaboration with school districts for children. ISC's don't have in their contracts to be able to participate in IEP meetings. For children in the waiver.
    • The language we use shapes ASD spectrum- it's a multi layer disability when we do the psychological assessment …. Missed I never hear these things spoken about I don't know if it would be beneficial to the task force to have someone speak to us on what are the layers of ASD.
    • The IQ number is a barrier- sets people up to not getting services or have to do an appeal. These people struggle in navigating and need different services.
    • Diagnostics getting done very late sometimes later in life.
    • Mental health has always been a separate silo. We have to do more education in MH with therapists. We are not prepared for working with people with autism in the mental health system.
  5. Old Business
  6. Announcements
  7. Next Steps
  8. 2024 Calendar year schedule

Subcommittee meetings prior to next full task force meeting:

Autism Insurance Subcommittee:

  • Monday November 20, 2023, 11:00 AM
  • Monday December 18, 2023, 11:00 AM

Adult Services Subcommittee:

  • Thursday December 14, 2023, 11:00 AM

Autism Transition Subcommittee:

  • Monday November 20, 10:00 AM
  • Monday December 18, 2023, 10:00 AM

Meeting Recording:

November 16, 2023