August 8, 2024, The Autism Task Force

Illinois Autism Task Force

August 8, 2024

10:00 AM to 12:00 noon

Minutes

Introductions
- Patti Boheme
- Kiya Olson
- Christine Hammond
- Mo Buti
- Cari Roestal
- Kruti Acharya
- Ruth Ann Sikora
- Sasha Boheme
- Paula Powers
- Danielle Harsy
- Lisa Betz
- Daniel Abankwa
- Susan Agrawal
- Kristin Gharst
- Yovia Xu
- Melissa Amison
- Justin Houcek
- Dawn Sikora
- Beth Carey
- Heather Lovgre
Division Updates- (DD, EI, DRS, DMH, ISBE)
1. DD- New rate sheet in process to go to all adult CILA with the new rate methodology with Healthcare rate score. 2.50 rate increase starting in January DSP. Grant for 12.5 million for recruitment and retention for providers. The bulletin for applications: https://www.dhs.state.il.us/page.aspx?item=161744
2. DMH- Hiring for "beacon portal", 2 positions as well as clinical specialist. Collaborate with Google and the portal should go live for out staff to transfer over current cases in the system much more high tech. Slow rollout- inpatient psychiatric hospitals first and then to sister agencies. Public roll out the 1st of the year. Sara Shorter is working on putting together resources for back to school for MH as it relates to children. 24-25 school year.
3. DRS- No Report
4. EI- No Report
5. ISBE- No Report
Workgroup Updates
1. Priority Updates Development- one priority goal for each workgroup and a priority for the full task force. Kiya reviewed the Priority worksheet goals and how we are using this.
2. Transition - Reviewed the preliminary piece of the survey and where the transition workgroup is going.
  - Discussion on PUNS notification, we are legally required to inform people about the Puns during the IEP. This survey was for a child with Autism with an IEP.
  - The application qualifies if they get on the PUNS list, they can get on the list at age 3
  - Educate the educators as they need to know kids can get on the list.
  - The purpose is to find out the level of support and make sure they know about it early- do they need them we don't know but the purpose is to get them educated so they do know about them if they need them.
  - ISC's are inconsistent with how they support it- they do a good job in crisis. Once we get it going it works. With education parents understand to report to PUNs when there are problems as it increases the urgency and not be afraid of- calling SASS for your services.
  - Arc does this 75% of the time, 2.5 yrs old to apply, waiting list resets at age 18 and starts over as the Ligas settlement everything is reset at 18 with 15 months is wait time. For kids unless they are in crisis they are not going to be pulled. If you not in crisis you are just on a waiting list. If in crisis won't get spot on children's list. Those getting pulled are over 18. The gov says the PUNS list is an interest list, if there is any possibility you might qualify they will put you on the list. Once your pulled it's a complicated process of qualifying. It's an interest list and not who qualifies. Non-citizens who are legally present qualify. I always encourage families to put their children on that list. Waiting lists that long are not okay. Put them on that list today for the best opportunity.
  - Can Illinois have develop an Autism booklet.- if I had a resource booklet to know what's instore for me. We need to provide Illinois with something we can utilize.
  - Autism speaks has a great handbook.
  - It is the access and time management - how many read absorb or understand how it applies to their circumstance. Not all access the internet. The best way is through grassroots organizations- informal personal on what meets needs.
  - Its all about the IQ - agencies just use OBRA 2- how does it have value. A person can be functionally disabled but have a high IQ.
  - Our members are the community liaisons of this group- they should know information before we pass it on.
3. Insurance - Barriers as a committee, assigning members to different states and trying to put things together. Looking at replication of how we want to implement for faster access to services.
4. Act Early - We are trying to move what we talk about here into fruition and what our workgroup goal is and working with advocacy groups to put into policy groups. Mostly about the need to intervene early and how to. Especially across the state. We are working through defining that goal. Plan to do engagement projects and awareness promotion. Make more actionable goals for DHS to act on.
5. Adult Services - Sherry Healey Chair is at a conference. We have had conversations on our priorities:
  - Person-centered access to community services, to meet the varied (or unique) needs of individuals with ASD. To recognize the diversity of need among individuals with ASD and provide the wide array of supports they need and give people the ability to use funding that matches each person's unique needs. It will give you an idea of where we are going not complete.
New Business
1. Engage Illinois: North Star Plan 2024 - we met with Sharon Costabile. Reshape on how Illinois supports it's citizens with disabilities living a full life in the community.
  - Came up with jump start opportunities to create change:
  - Sustainable Structure: An Advocacy Coalition is created as a sustainable overarching structure with arms to advocate in the areas identified. By combining members from other related organizations with 38,800 plus strong we have critical mass to push for changes as necessary.
  - Vision There is a universal vision about the I/DD system and services amongst stakeholders from all areas: Self advocates, families, allies, the Illinois Department of Human Services and the governor's administration.
  - Waiver Amendment Research and draft a proposal for a supported living waiver with a menu of options based on consumer need. Allow for flexible creative solutions with a person centered focus which includes support for medical, mental health, and behavioral needs added to the waiver amendment.
  - Educational and Infrastructure Develop comprehensible and easily accessible avenues for educational understanding of the state services across the lifespan of people with developmental disabilities and their family support network beginning as a part of the academic years.
  - Engage Illinois North Star has ongoing interactions with the team and tracking progress of focus committees regular meetings.
  - We met with Sharon to hear about them and hope to collaborate with them.
2. Discussion under the insurance piece/workgroup about on Service animals and it is considered medical equipment and should be permissible at the worksite under ADA but they can state it's a hazard and prohibited by cost. This is a conversation we all need to enter and understand.
Old Business
Announcements
Join workgroups- Susan Agrawal to transition workgroup
Next Steps
2024 Calendar year schedule
1. Autism Task Force Quarterly Meetings
  - November 14, 2024, 10:00 AM-12:00
2. Autism Insurance Subcommittee:
  - Monday August 19, 2024, 11:00 AM
  - Monday September 16, 2024, 11:00 AM
  - Monday October 21, 2024, 11:00 AM
3. Adult Services Subcommittee:
  - Thursday September 5, 2024, 11:00 AM
  - Thursday October 3, 2024, 11:00 AM
  - Thursday November 7, 2024, 11:00 AM
4. Autism Transition Subcommittee:
  - Monday August 19, 2024, 10:00 AM
  - Monday September 16, 2024, 10:00 AM
  - Monday October 21, 2024, 10:00 AM

Meeting Recording:

Recording