February 8, 2024, The Autism Task Force

Illinois Autism Task Force

February 8, 2024

10:00 AM to 12:00 noon

Recording:

Meeting Recording

Minutes

  1. Introductions:
    • Task Force:
    • Dr Kruti Acharya 
    • Patti Boheme Present
    • Sasha Boheme Present
    • Amanda Brott 
    • Stephanie Brown Present
    • Mo Buti 
    • Dr. Tom DiMatteo
    • Theresa Forthofer 
    • 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:
    • Lisa Betz
    • Danielle Harsy
    • Sean Weldon
    • Benny Delgado
    • Kim Mercer-Schleider
    • Paula Powers
    • Daniel Abankwa
    • Nkechi Onwuameze
    • Christine Hammond
    • Partners:
    • Emily Frankel
    • Ebonie Davis
    • Susan Agrawal
    • Ebony Shelby
    • Justin Houcik
    • Kimberly Johnson
    • Maureen Karwowski
    • Alison Kerans
    • Colleen Shin
    • Bonnie R
    • Curtis Harris
    • Verna Smith
    • Kristin Gharst
    • Dawn Sikora
  2. Division/Agency Updates- (DD, DMH, DRS, EI, ISBE)
    1. EI- Offered multiple trainings for EI trainings 2-3 part series. Focusing on workforce and stabilizing and expanding the workforce. Marketing campaign around early intervention and recruiting providers. IL cares how to get credentialed and find ways to streamline the site. Looking at other states and funding EI and what they are doing with immediate recommendations to stabilize the system and long- term changes to expand provider pool. In paying for travel for home visits, comparison in costs with other states, cost modeling. EI cost survey and time use study and we will reach out to our medical diagnostic team. Family town halls to hear directly from families. Shared link for the family town halls. Opportunity to hear directly from them and helps us plan to future improvements to the system. Created EI rights page that walks families through the different timelines. All the information they need to be advocates for themselves.
    2. ISBE- transition to post- secondary. ATTA recently held a transition to college preparing students with autism - it is available on there website and a link to the webinar series. A+ learning modules posted both come together to provide an annual conference April 3, if there are any ideas of feedback on how to continue the conference since there are budget restraints looking for partners - they partnered with autism they want to grow the conference any suggestions can be shared with Paula.
    3. EEOPD - working on reconvening and pulling all data together and legislation as we work on disparity of pay and other issues. We would love to hear from you. Part of employment first which is a federal initiative- people employed through systems changes.
  3. Workgroup Updates
    1. Transition -Currently 321 responses to the survey, 13 Spanish, 334 total. Put out another request to share to get more response.
    2. Act Early- Cari a lot of active projects with ICAP working with EI in partnership with lend trainees. A lot of great programs and providers don't have that information in a toolkit. Pediatricians need more info to navigate the EI and special ed screenings.
    3. Adult Services - Concerned about the DSP only being a pause, for adult services we need more funding not less.
    4. Insurance- Subcommittee for early diagnosis collecting info on providers to determine capacity and wait lists. 166 providers and we have had some accuracy issues. We are working with DD Director on what it looks in the state. Tap did a mini look at screening sites 9mos-2yr waitlist through TAP - 500 evals per year. She recommended we look at American psychological association however the website is not working at this point.
  4. New Business
    1. DSP Hours- recent cut in DSP hours, 2023 CILA rate calculator to be implemented in 2024 give fewer hours for clients who did not need and more for those who needed. But they cut back on overall hours. Many parents and providers spoke out against this so it is on pause. We are concerned about the pause, need more hours not less.
    2. Task force awareness of current issues- this discussion has been happening and we were late to getting to the game. We want at every meeting to share current topics we definitely need to be on top of this, We had a letter ready but fortunately did not have to send it.
    3. Medical respite: Reported by Dr. Ed Cook Hospital units seeing with person with autism who need residential placement. They repeatedly come to hospital as there are no hospital units for DD, the ER does not know how to handle, some are in ER for days. We need more sophisticated services - community crisis-based programs.
      • Comment- Behavioral health is a new service and we have encountered issues from lack of services. Autism rates are twice the national average with high rates and limited services. There are no options in the area. This is not unique to Illinois. Legislation in New Jersey set to stabilize in the home and those that need more don't go to the hospital but a home to stabilize. START models that states are looking at as a pilot program. Need the funding to implement.
    4. SSH are looking to expand in the coming year for a little longer stay (at 90 days)
    5. ICPN-SST-they can help with stabilization in the home but not with providers. We have 8 crisis homes. It sounds like a good model it would be good is there a way to gather this info - stats.
    6. Much of this does not have data attached to it, we send children to hospital and they are told they can't get helped and are not tracked in the system. How do we make this argument?
    7. Perhaps a portal for families seeking residential placement. This portal will collect data not necessarily ASD. There are several agencies directed in this portal. Portal implemented in July.
    8. Google is building the portal through DMH Dana Weiner is doing as the front door to children's behavioral health. Is to know what the best practices are to educate folks on what it means to have a diagnosis of autism
    9. DMH DD and DFCS, DCFS, IDPH, HFS, DJJ all working on the childen's waiver- they are all part of the work SUPR is also getting involved. Under the portal taking all the work and streamlining to one front door and a single door to access services. There will be a huge marketing piece that will go with this.
    10. Support dog is considered durable medical equipment - there is a lot of misunderstanding in the community about service dogs. This is different than a mobility service dog. Pamphlet on etiquette might be beneficial.
  5. Old Business
  6. Current Topics for the ATF- this is new to the agenda for immediate topics to be shared.
  7. Spotlight Introduction
  8. Announcements
    1. Advocacy Day/Autism Acceptance day on April 12th at the Capital in Springfield from 8:30- 1:00 if you would like to have an informational table please reach out. Our speakers will start at 10:30. Some of our focus will include our concerns about wait time for services, and lack of services. If you would like more information my email is autismsocietysi@gmail.com
    2. Mark Gold and associates how to embed customized employment into schools, we are looking for school districts who would be interested.
    3. Discussion on legislative Liaison committee- need to fill a gap about communication.
    4. Revisit the curriculum on police training. Critical incidence training. Getting engaged students and police officer.
  9. Next Steps
  10. 2024 Calendar year schedule 

    1. Autism Task Force Quarterly Meetings

      • May 9, 2024, 10:00 AM - 12:00
      • August 8, 2024, 10:00 AM - 12:00
      • November 14, 2024, 10:00 AM-12:00
    2. Autism Insurance Subcommittee:
      • Monday March 18, 2024, 11:00 AM
      • Monday April 15, 2024, 11:00 AM
      • Monday May 20, 2024, 11:00 AM
    3. Adult Services Subcommittee:
      • Thursday March 7, 2024, 11:00 AM
      • Thursday April 4, 2024, 11:00 AM
      • Thursday May 2, 2024, 11:00 AM
    4. Autism Transition Subcommittee:
      • Monday March 18, 2024, 10:00 AM
      • Monday April 15, 2024, 10:00 AM
      • Monday May 20, 2024, 10:00 AM