May 13, 2021, Illinois Autism Task Force

Illinois Department of Human Services

Autism Taskforce Meeting

May 13, 2021

10am - 12pm

Agenda

  1. Introductions

  2. Workgroup Updates

    1. Transition
    2. Insurance
    3. Act Early
    4. Adult Services
  3. Division Updates- (DD, EI, DRS, DMH, ISBE)

  4. New Business

  5. Old Business

  6. Announcements

  7. Next Steps

  8. 2021 Calendar year schedule

Thursday May 13, 2021, 10:00 A.M. to noon

Thursday August 19, 2021, 10:00 A.M. to noon

Thursday November 18, 2021, 10:00 A.M. to noon

 Meeting Minutes

  1.  Introductions

 Task Force:

Dr. Acharya Kruti UIC-Act Early X
Bean Gloria DHS-DD X
Boheme Patti Little Friends Center for Autism X
Boheme Sasha Hinsdale Township Highschool X
Brott Amanda TAP X
Brown Stephanie Autism Society, Southern Il X
Buti Mo Aiepi X
Cirincione-Ulezi Nasiah Ulezi, LLC X
Cohen Amy UI-Champaign
Dacy Brian Life Tech X
Dr. Daniels Rob Chicago Children's Clinic
DiCianni Pete Commissioner, DuPage County Board X
Dr. DiMateo Tom Wellspring X
DiVittorio Tony Clearbrook
Forthofer Theresa Easter Seals- DuPage, Fox Valley X
Frieburg Ann DHS-EI
Dr. Fried Karen Sonia Shankman Orthogenic School
Gizewski Candice Behavioral Perspective
Dr. Gamucio Ramiro Parent X
Hammond Christine DHS-OAS X
Healey Sherry Parent X
Herbstritt Terry PACTT Foundation/Parent X
Jiongco Chuck Behavioral Perspectives
Ladislas Sherry Trinity Services/Parent X
Dr. Losh Molly Northwestern University
Dr. McKenney Elizabeth Southern Illinois University, Edwardsville
Olson Kiya ASPB Therapy Pathways X
Onwuameze Nkechi IBHE X
Ovalle Matia Grupo-Salto
Pasha Zoubida Family Resource Center on Disabilities
Pfister Aimee Day One PACT X
Powers Paula ISBE X
Dr. Roberts Megan Northwestern X
Roestel Cari Act Early Ambassador, LEND
Shinn Colleen Autism Speaks
Sikora Ruth Ann Parent X
Stark Allison DHS-DD Director
Vines Debra The Answer
Weldon Sean DHS-DRS X
Dr. Williams Constance DHS-MH X
Partners:
Banks Christopher Autism Society of America- Guest Presenter X
Berger  Natalie X
Carlson Jennifer X
Davis  Taylor X
Dixon Mary X
Dysen Shannon TAP X
Estes Amanda Autism Collective X
Hamer-Sinclair  Mariel X
Johnson Christine X
Karwowski Maureen X
Kelly Mary The Autism Program X
Malone Wanda X
Mulford Laura X
Reuter-Yuill  Lilith Southern Illinois, Carbondale X
Root Marla Insurance Coalition X
Sikora Dawn X

Christine reviewed the new member nomination process. We have approximately 10 members who have been appointed at this time. The appointment process is a longer review process now. This administration is very mindful of inclusivity. Nominees are reviewed by our Office of Strategy and Equity and Transformation (OSET). We want to make sure we have not only wide diversity on the group but geographic diversity representing all areas of the state. OSET will also work with us on ways to find ways to recruit representatives in hard to reach areas.

II. Workgroup Updates

a. Transition

  • Transition committee: The transition subcommittee met with the EEOPD Transition subcommittee. The EEOPD is talking of making college more accessible for people with disabilities, right now only 3% go on to college. A lot of current Illinois legislation was discussed on 1) covering children who have missed time over the last year, 2) completing out the 22 year, 3) and increasing graduation age to 24. Bringing in "Pathway's" to do discovery during the transition years. They want to get it going but not ready to standardize this across the State.
  • For the Autism transition sub-committee our goals for the end of this fiscal year is crafting effective ways to help parents get information to guide their kids during the transition years. In 2011 a transition wheel was developed, it is no longer in circulation and out of date, simple tools with easy access are what we need for parents. We also want to come up with a parent bill of rights to simplify and help parents get information. Currently parents do not have an understanding of what they should be doing and the information is not getting to them in a usable/easily understood manner. For example, many times they do not even know what DRS is. Transition is done differently across the state.

We hope that once we have tools much of the problem is marketing the message and getting it out there via school districts, providers, doctors offices… There is so much information out there but it is not getting to parents.

* Our first step is to develope a survey tool by the end of this fiscal year to gage where parents are lacking information and knowledge.

Wanda- it is important for us to get the community input from our survey before we go forward.

b. Insurance

* Marla Root reported- Created a survey for providers for kids receiving ABA whether it is comprehensive or focused. Only 36% getting comprehensive 64% getting focused. Not all kids need 40 hours, we need to educate what is really happening in our field. This will be a big factor in the estimated costs.

* Question was asked about alternatives to ABA which are facing the same barriers and we are not paying attention too. There should be an umbrella for services We can get back to Marla on this.

* Marla, Kia and Patti are looking at creating a chart on what providers can do the diagnosis and what assessments are necessary not for just ABA but other services. Most insurance does not cover these because they are not evidence based.

If you have a good biller that understands the billing and codes it might be able to be covered.

* The task force should hear about all treatments. A partner commented that individuals on the spectrum feel ABA it is psychologically harmful to them.

* Patti put out a call for more people to join on the Insurance committee so we can broaden our work to add waiver discussion and other services covered.

c. Act Early (Kruti)

  • Concerns highlighted and addressing: Process of referrals- working model in Illinois, communication breakdown between the MD and the specific referral for ASD to EI. Touchpoints were EI can intervene
  • Months to year for diagnosis to get specific intervention. No required training for autism specific concerns, working on what additional training we can provide
  • Standardized follow-up and walk through for pediatricians
  • Equity - Medicaid late diagnosis
  • Because of low reimbursement rates not enough specialized MDs in the field
  • Lend project interviewed different states for best practices
  • Survey of active BCBA providers 1300 in state, only 99 initiated enrolment in EI, only 22 are practicing in EI and certified or credentialed.
  • Anti- ABA
  • No mentorship
  • Difficulty with CED
  • Difficulty finishing program
  • We want to make it easier for people to maintain credentialing and getting credentialed.

d. Adult Services

* Due to time constraints we did not get Adult Services report this quarter, will add to the next meeting.

III. Division Updates- (DD, EI, DRS, DMH, ISBE)

  • DMH- (Constance) Fiscal year over next month and we are deep in NOFOs Going to be a new 988 emergency call number for mental health crisis and suicide - it will be a national number.
  • ISBE- (Paula) Transition there are many consultants working on components of secondary transition. An internal power point we will high light what the groups working on this are doing (task forces, commissions…). I will email this task force to get that information from you. This is a busy time of year for transition with the end of the school year.
  • There is a new department at ISBE which is the Student Cares Department. "The Student Care Department is designed to ensure that the collective and individual needs of students are met and that districts are responsive to the needs of children and families. As an initial step, this dept. is involved in time-out and restraint in IL school districts. The Student Care Department will also be the agency's point of contact for bullying prevention and bullying policy reviews and complaints, discipline reduction, ISBE's Student Advisory Council, supports, advocacy, inclusivity in schools, and will act as the main contact for any student or parent complaints received by the agency with respect to most all areas of the School Code." Additional information is available at www.isbe.net website.

IV. Autism Society of America

Chris Banks from the Autism Society of America:

* Strategic Plan to be rolled out in the next few weeks. Chris has been with the organization since January last year.

* They did not make familiarity with autism as a requirement of my position Came with a desire to be part of transition.

* Vison for our future: Fundamental and then some national

  • Front door- You feel like you are getting the information you need - new branding and marketing campaign. Our mission and vision will change. Is everything you are doing keeping with the vision and mission of your society. The Website and logo change make it more identifiable
  • Work on technology
  • Expand affiliates (Chicago region) have 74 affiliates
  • Systemic ways to better meet the families, support groups all over the world, reach is smaller because of technology.
  • Michigan had no affiliates.
  • Law enforcement training
  • Establish state advocacy programs - COVID money sent to states, using Medicaid waiver funds in the wrong way.
  • We want to create an autism justice center - advocacy and justice for ASD so people have a place to come to get help
  • National training program- leading cause of death for autism is drowning
  • Around employment - different conversation on employment, what about the lower level employee. Bring the entities that can make that happen gov, education, labor, large corporations, and small business. Gov needs to look at this as an economic program talk about this differently.
  • Home and community- based service act do not lose those. Cannot move forward and then remove safety net. Cannot limit by how much you can earn, we have a roll in this.

These are our national focus issues

* Pulling together a group on we have two panels at AS one is people with autism, the other is panel of professional advisors

* I have asked for a position paper on ABA, challenges current and historic so we have an ABA commission to talk about the pros and cons and challenges for a position paper in the coming months. If anyone wants to be a part CBanks@autismsociety .org

* Ramiro (his 6 year old has thrived on ABA) We need to come up with national guidelines so families can easily access and guide primary care doctors and getting to insurance companies to get diagnosed. Tell doctors what we need to do to help children.

* Will we have a chapter here in the Chicago area- it's a real desire of the Autism Society it's a large section of the state that is underrepresented. Pete wants to connect to we can come up with a solution to have a strong presence in this area.

* Autism society helped to centralize services. We have a strong passion to bring the autism society to the Chicago area.

Discussion: Ramiro - why can't we have health systems in Chicagoland help

our autism individuals in. There is a coalition in Chicago in one location but not developmental pediatricians in this. Why would a health system want to join forces with another but it is being done in Wilmette it can be done in our harder to reach areas in Chicago or down state. Patti asked for more information on this for us to follow-up.

There are a lot of partnerships and synergies we just need them to act on the autism level, if we have a working model it would be helpful. We know there is a need.

Shannon Dyson- we are trying to do many of the same things, I think it would be great to have a discussion to connect to create a system.

Stephanie-When I first came in I was under the Chicago chapter and that chapter was not functioning. We don't want to recreate anything we want to work with and partner not recreate. There used to be 5 chapters originally. It is about making the connections and getting the conversations heard. We don't want to come in and take over anything and that is not what moving forward is about.

Brian - I joined the Lombard affiliate board and pretty quickly realized that the financials were in shambles without a clear plan but had to wind down that affiliate. It is shocking that Chicago and most of Illinois does not have representation. The national committee should focus on how we can rebuild a new brand out here.

Aimee - hoping to learn more about the ABA commission ABA services while still maintaining the integrity of the services.

V. New Business

  • Patti discussed creating an advisory team in order to be more efficient in vetting and disseminating information out to the task force as well as making decisions that require a quick turn-around. It will be our committee chairs and a few other representatives.
  • Stephanie Brown from the Autism Society in Southern Illinois reported on a meeting with Senator Durbin. Covered a number of topics- the wait time for diagnosis, most of the time they are close to transitioning out of EI. In Southern Il we do not have enough providers and TAP needs more funding to serve more children.

VI. Old Business

VII. Announcements

  • The IL LEND is still accepting applications for family and self-advocate trainees for the upcoming cohort to start in August. IL LEND is an interdisciplinary training program committed to train leaders in the disability field. If you are interested in learning more, please check out our website illinoislend.org and email me at acharyak@uic.edu
  • Safe2Help: a program for students to report school safety issues in a confidential environment.
  • CARES Line: Crisis and Referral Entry Services available 24 hours 7 days a week designed to assist individuals in Illinois who are a risk to themselves or others due to a mental health crisis. 1-800-345-9049
  • State Help lines: * Cyber Bullying & Internet Safety Illinois Attorney General Stay Connect, Stay Informed: Cyber Bullying and Internet Safety * CARES Line: Crisis and Referral Entry Services available 24 hours 7 days a week designed to assist individuals in Illinois who are a risk to themselves or others due to a mental health crisis. 1-800-345-9049 * Safe2Help: a program for students to report school safety issues in a confidential environment. * Call4Calm: an emotional support text line text TALK to 552020 for English or HABLAR for Spanish
  • http://autismhousingpathways.org/wp-content/uploads/2021/04/Turning18checklist_04-2021.pdf
  • https://www.thearcofil.org/wp-content/uploads/2021/05/Mental-Health-Resources-Fact-Sheet-May-11-2021.pdf

VIII. Next Steps

IX. 2021 Calendar year schedule

Thursday August 19, 2021, 10:00 A.M. to noon

Thursday November 18, 2021, 10:00 A.M. to noon

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