February 13, 2025, The Illinois Autism Task Force

Illinois Department of Human Services

Autism Taskforce Meeting

February 13, 2024

10am - 11:30am

Minutes

  1. Introductions:
    •  Members
    • Dr Kruti Acharya
    • Patti Boheme Present
    • Sasha Boheme
    • Amanda Brott Shannon Dyson - Present
    • Stephanie Brown
    • Mo Buti
    • 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
    • Ruth Ann Sikora Present
    • IDHS/State agencies:
    • Sean Weldon
    • Benny Delgado
    • Nkechi Onwuameze
    • Lias Betz
    • Danielle Harsy
    • Kim Mercer-Schleider
    • Partners:
    • Tamar Heller
    • Beth Carey
    • Ryan Johnson
    • Justin Houcek
    • Marla Root
    • Yue Xu
    • Paula Powers
    • Emily Mehta
    • Kimberly Johnson
    • Verna Smith
    • Jennifer Simpson
    • Kiya reviewed the meeting guidelines.
  2. ICDD Medicaid updates by Kimberly Mercer Schleider
    • Role is to implement Systems changes to better serve DD- as well as get information to people with DD.
    • Threat to Medicaid programming from the Federal level.
    • The FY25 funding under continuing resolution that expires on March 14- how they will fund the rest of the year?
    • The next few weeks are important to pay attention as they are going to debut their ideas and create something to pass that fits into the President's agenda.
    • HR-promised across the board 3 trillion cuts into the next fiscal year.
    • Energy and Commerce committee decides on Medicaid financing, the HR indicates 880 billion cuts. No way this happens without severe cuts to Medicaid.
    • Medicaid is about trying to stay out of institutions - Medicaid had an institutional lean. The optional programs are the community programs- those will be the first thing on the chopping block. We don't know how and what the tools for doing this are. It doesn't matter as a cut reduces access.
    • Call your legislator and say protect Medicaid is the messaging. Leave a message, if you get an email- repeated calls are important.
    • Legislators are on home office visits next week.
    • Open office hour series on how to advocate and not sure, how to get your story and training in partnership with access living. Scripting on how to get this out.
    • Any impact will hurt it creates new barrier for people to prove they have a barrier.
    • We are non-partisan, our Illinois senators are on board, in the House it falls on party lines both need to hear from you to "stand Firm" for Democrats, and resist cuts for Republicans.
    • The optional services list.
      • Private duty nursing services (1905(a)(8), 42 CFR 440.80) Clinic services (1905(a)(9), 42 CFR 440.90) Dental services (1905(a)(10), 42 CFR 440.100) Physical therapy (1905(a)(11), 42 CFR 440.110(a)) Occupational therapy (1905(a)(11), 42 CFR 440.110(b)) Speech, hearing and language disorder services (1905(a)(11), 42 CFR 440.110(c)) Prescription drugs (1905(a)(12), 42 CFR 440.120(a) and 42 CFR 441.25) Dentures (1905(a)(12), 42 CFR 440.120(b)) Prosthetics (1905(a)(12), 42 CFR 440.120(c)) Eyeglasses (1905(a)(12), 42 CFR 440.120(d)) Other diagnostic, screening, preventive, and rehabilitative services (1905(a)(13), 42 CFR 440.130) Services for individuals aged 65 or older in an Institution for Mental Disease (IMD) (1905(a)(14), 42 CFR 440.140) Services in an intermediate care facility for Individuals with intellectual disability (1905(a)(15), 42 CFR 440.150) Inpatient psychiatric services for individuals under age 21 (1905(a)(16), 42 CFR 440.160 and 441 Subpart D) Hospice (1905(a)(18)) Case management (1905(a)(19), 4
  3. Spotlight: Tamar Heller- the Bridge Project UIC
    • Most of our initiatives have Federal funding, UIC is in the same vein as the disability network. NIS, research funding and bridging projects. Everything has the word diversity in it, and we fought very hard for this as DEI has disability included in it.
    • We must advocate and of course keep doing our work and hope we get supported in our work.
    • Institute of Human Development.
    • Bridging projects funded through the admin of community living.
    • Dual diagnosis- Autism is a big part of that.
    • We worked with Judith Cook in department of psychiatry and embedded in the MH system- we developed a website to support people with dual diagnosis.
    • The website can be accessed at: www.illinoisdualdiagnosis.com
    • Video training for families and briefs on dual diagnosis- not an academic use but practical. We are one of 5 centers funded to do this across the country.
    • Also meeting to work on systems MH and DD crossing with Autism and working together.
    • Cognition behavior clinic with TAP- Many kinds of therapies this is a growing part of services.
    • LEND program - many students training, behavioral approaches are merged with disability studies approaches. Do many trainings for CEUs.
    • Bridging, aging, and disability- we have family support research and training center.
    • Disability policy center with a lot of data that can be useful in advocating for Medicaid. Stories and data are both good. Expansion Medicaid actually saves money and facts behind that helps.
    • Expansion of what we are doing nationally- "future is Now' partner with ARC.
    • Very little research on aging and autism, many older people were diagnosed with other things earlier in life.
    • Project on merging aging and disabilities- we provide the TA related to that project. Illinois is looking at no wrong door.
    • Virtual future is now - train the trainers. Nation- wide and will do a Spanish speaking group.
  4. Division/Agency Updates- (DD, DMH, DRS, EI, ISBE)
    1. DMH- Beacon portal is live- follow through to the process.
    2. DRS- 18.25 per hour
    3. EI- autism focused training. Annual report to ISBE publicly post all to the website. Transition from IDHS to the new department of early childhood in 2026.
    4. ISBE- conference
  5. Workgroup Updates
    1. Transition -Survey still under review and will be working on a draft report with recommendation which we will bring to the task force to get input.
    2. Act Early - report to the DHS Secretary- Medicaid and private insurance most Medicaid families rely on school service and the department of education is also looking at severe cuts also.
    3. Adult Services - working on a survey of various stakeholders on providing services for adults - info from DD to do something similar so we will pivot and offer support to the division on getting their survey widely circulated to the Autism community.
    4. Insurance - Access to diagnostic services to get quicker services other ways to get screenings. Spent time with Wisconsin, CDC act early, pediatrician training, reduce the wait at NW university. DHS help us to solve these pathways to barriers to access for care.
  6. New Business
  7. Old Business
  8. Current Topics for the ATF:
    • Sherry ISBE on Alternative to guardianship- ISBE will be sending out to the Special needs community.
  9. Announcements
    • SB3201- Healthcare clean-up bill - removal of the autism research
    • April 2, Advocacy Day
    • New DHS Assistant Secretary of Programs: John Schomberg
  10. Next Steps
  11. 2025 Calendar year schedule
    1. Full Autism Task Force:
      • May 8, 2025
      • August 14, 2025
      • November 13, 2025
    2. Autism Insurance Subcommittee:
      • Monday, February 24, 2025, 11:00 AM
      • Monday, March 17, 2025, 11:00 AM
      • Monday April 23, 2025, 11:00 AM
    3. Autism Transition Subcommittee:
      • Monday February 21, 2025,10:00 AM
      • Monday March 17, 2025, 10:00 AM
      • Monday April 23, 2025, 10:00 AM
    4. Adult Services Subcommittee:
      • Thursday March 6, 2025, 11:00 AM
      • Thursday April 3, 2025, 11:00 AM
      • Thursday May 1, 2025, 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.