February 13, 2020, Autism Task Force Meeting

February 13, 2020; 10am - 12pm

Springfield: 100 S. Grand Avenue East, 3rd Executive Video Conference Room

Chicago: 401 S. Clinton, 7th Floor, IDHS Executive Video Conference Room

Conference Number: 1-312-535-8110 access 800-872-153


  1. Introductions
  2. Division Updates (DD, EI, DRS,DMH, ISBE)
  3. Workgroup Updates
    1. Transition
    2. Insurance
    3. Act Early
  4. New Business
    1. EI diagnosis
    2. SB84 recap
    3. Annual Report
    4. Annual Ethics Training and Sexual Harassment Prevention Training
  5. Old Business
    1. BCBA
    2. Insurance bill progress
  6. Announcements
    1. World Autism Day
  7. Next Steps
  8. 2020 Calendar year tentative schedule
    1. Thursday February 13, 2020 10:00 A.M. to noon
    2. Thursday May14, 2020 10:00 A.M. to noon
    3. Thursday August 20, 2020 10:00 A.M. to noon
    4. Thursday November 12, 2020 10:00 A.M. to noon


February 13, 2020

10am - 12pm

Springfield: 100 S. Grand Avenue East, 3rd Executive Video Conference Room

Chicago: 401 S. Clinton, 7th Floor, IDHS Executive Video Conference Room

Conference Number: 888-494-4032 access 834-224-3963

I. Introductions:

Task Force:

Dr. Acharya Kruti UIC Act Early X
Boheme Patti Little Friends Center for Autism X
Brott Amanda TAP X
Dr. Brouillard Cynthia Little Friends X
Brown Stephanie Autism Society, Southern IL X
DiCianni Pete Commissioner, DuPage County Board X
Frieburg Ann DHS/EI X
Dr. Fried Karen Advocate Health X
Hammond Christine DHS/OAS X
Healy Sherry DHS/Employment First X
Herbstritt Terry PACTT Foundation/Parent X
Ladislas Sherry Trinity Services/Parent X
Ovalle Matte Grupo-Salto X
Pasha Zoubida Family Resource Center on Disabilities X
Runyon Jim Easter Seals Central Illinois X
Sikora Ruth Ann Parent X
Dr.  Williams Constance DHS/MH X
Dr.  Brazdziunas Dana Lurie Children's Hospital X
Dr. Cirincione-Ulezi Nasiah BCBA X
Dr. Gumucio Ramiro Parent X
 Hernandez Grupa Salto X
Mercer-Schleider Kim Council on Developmental Disabilities X
Mulford Laura X
Dr. Mosk Mark Behavioral Healthcare Advisory and Strategy X
Olson Kia BCBA X
Root Marla Insurance Coalition X
Roestel Cari Advocate, Act early Ambassador X
Sagel Andrea Easter Seals-DuPage X
Dr. Widman Cheryl Parent X

II. Division Updates (DD, EI, DRS,DMH, ISBE)

EI-Working on filling staff positions.

DD-No Updates

DRS-No Updates

DMH- Looking at influencing movement of clients out of hospital and into the community. The Williams consent has impacted changes happening. Making smoother transitions from hospital to the community for super users.

ISBE-No Updates

III. Workgroup Updates

a. Transition

The Transition sub-committee met via phone conference with an active discussion. We struggle with the direction of the transition committee because it is such a wide encompassing area. We would like to pull together a state-wide day- long meeting with all stakeholders to focus on transition.

Some of our members attended the EEOPD transition subcommittee. Illinois Council on Developmental disorders will be taking on the Interagency Coordinating Committee (ICC) responsibilities with the support of the EEOPD. We had a task force meeting two days ago and looked at what the ICC will look like. There are so many important data sharing pieces and we are in the initial phase of working out the pieces. The ATF wants to get involved with the EEOPD group because it is such a big issue to coordinate. We will reach out to Kim Mercer-Schleider to talk about this. Zoubida Pasha is also a council member for ICD.

Ruth Ann brought up the process after a person is out of school and is not receiving services.

Sherry (EEOPD) - Commented it is great the council is taking the lead. Grateful there is synergy between all of the groups. I am still looking at where we left off from my predecessor and what we can build on going forward.

b. Insurance

ABA coverage with 42 million was placed in the budget - the implementation of this is a stopping point, the State Plan Amendment has limitations on what professionals can administer the ABA therapy and these restrictions severely limit the numbers of professionals who qualify. Pete will be meeting with Deb Conrad because it has been a frustration. It was passed in the BIMP bill. The initial bill did not have an appropriation but we got into the BIMP bill.

Many organizations listed letters of support. We question whether the state is opening itself up to legal challenge? The answer is yes because this plan requires more than private insurance requires.

Discussion on what happens if we cannot spend the dollars because we don't have anyone who can administer the therapy. Is there a larger appropriation that is needed-we don't know and are we thinking about larger money ask? What is protecting that 42 million while we wait for the state to correct its mistake?

We need to get at least the same appropriation next year as last year. There are a lot of people involved. We sent Dr. Goyle (HFS) background information and had a conversation. Some decisions were already made before they received comments.

Marla Root with Autism Insurance Coalition. Families need connecting to these practitioners. I am building a list we think its 20-25 people in the state so I can get their names and locations to help file appeals.

Stephanie from Autism Speaks Southern region has opportunity for face to face with the governor. The conversation was about the providers and the federal dollars attached to the BIMP. We need pressure of HFS to get this right. Also Doug Elwell Division of Medical Programs at HFS recently resigned.

CVS purchased Allini Care and also owned Aetna previously. Chicago public schools are being sued for not providing services to children with special needs.

Medicaid will not be reimbursing for school services, cannot use Medicaid money for education.

Mike Wasmer had provided us with a number of lawsuits we should review* Send to Pete

c. Act Early

Act early ambassador Carri Roestel at advocate Health, goal is to improve screening and identification, specifically look at sites with autism diagnostics throughout the state and what the needs are. Developing that list, we sent out a survey. Many people responded that they don't provide the service. Many we had thought did provide diagnostics so parents probably also think the same.

IV. New Business

EI diagnosis:

Dr. Dana Brazdzuinas, Developmental Pediatrician Northwestern Lurie's Children's Hospital will join us to discuss EI, and early diagnosis.

We do work with kids with autism-see 5-6 kids and preschool children. We have a large role of educating our future pediatricians who get fairly extensive training on diagnosis.

We need to bring Diagnostic centers together again to talk about these things.

The early diagnosis wait has climbed to 10-12 months from 3-4 months, although it is a mystery on why this has occurred.

We don't do the diagnosis on 6 or older.

We are very worried about diagnosis. About 7% of those we see get a diagnosis. Mainly because they are somewhat selected by professionals prior.

The critical problem is how best to increase capacity in Early Intervention, we just hired a PA for follow up and medication and diagnostics and work with a psychologist. Team evaluations are far easier.

Financial issues block the ability to expand- 16% are Medicaid, the hospital is keeping us afloat to do this. We cannot come close to breaking even. (Medicaid paying is us $16.00 dollars per ADOS reimbursements) so it is difficult to expand our services. The model out of Vanderbilt is for pediatrician's extensive training. Also telemed has been approached. Psychologist should be part of the diagnostic team to increase capacity. Way too many kids and should be getting diagnosed earlier. One of the issues is the -what happens afterwards - we think there are therapies out there but doubtful you can access them. It is a real source of burnout to providers. People think we have this magical way of getting them services.

There are a lot of home services, but little access of care especially rural areas.

Early diagnosis-Parents who have concerns - they put on waitlists but not sent to other places. The concern is that kids don't get diagnosed during EI and won't get diagnosed trough the school. If they don't get EI diagnosed it affects their services when they get to school age.

There is a volume of kids who are 32-36 month age range who are taking up all the spots for diagnosis.

Kia- There is a lot of wait and see (6 months) they are usually 2 1/2 by that time and losing the window for EI diagnostics. It's important to bring up when a medical diagnosis should be completed.

Dr. Dana- you can look at the early evaluations and see that the child has early red flag signs and could be diagnosed.

One way to further this along is through the Echo program. There needs to be education on how to talk to families and how to educate families about the diagnosis and the next steps. The training is very specific; diagnostics are easier at younger age rather than older as the signs keep changing as they age.

Another piece that gets lost- StarNet. Neuro- Psychologist and creating a paper trail. It's an emphasis that needs to be look at. Especially in looking at the ADOS. We have resources that are under-utilized.

My children benefited from having a Neuro- Psychologist role in diagnosing.

We can look at TAP in looking at who are the people who can diagnose and get a list.

Service coordinators around the state look at this differently - many perceptions. Some of the confusion is different medical diagnostics across the state that acts different. Looking for a broader training. Coordinated conferences for the service coordinator instead of "I heard this and that" - this is how it should be. Any child in EI does not get pulled out or held off.

EI training for a high frequency diagnosis - would the EI do the MCHAT at prescribed times? We can always offer professional to learn more because they just don't know.

Cynthia- different CFC's have different philosophies would it be helpful to have a specific protocol. So we don't just wait. And we can refer them out faster. This would provide better clarity. (standardize)

No one here present from the academy of pediatrics.

Not enough time to train residents on an ADOS to add more trained individuals. It has to be part of a system and how to provide follow up. Advocate for a tiered system.

Given the wait list is tiered, a provisional diagnosis would allow children to get access to therapy while they wait for true diagnosis. What can be done for kids on Medicaid?

Military families are getting children diagnosed much earlier? They have a good health system.

Kruti- Transition from kids into the adult healthcare system there is less training in this area,

All those tools can be learned and should not be discounted.

EI providers, have a statement for parents who have concern they don't have to wait for therapy, relay to them that time does matter. Have a consistent message by all CFCs.

Cannot pigeon hole ourselves into thinking these people can't do these diagnosis. We need to form a cohesive group to tell the state- insurance companies are hindering our children.

Pediatricians are a key role as well as clinical psychs in EI. There is no reason psychologists can't make a diagnosis. Due to misguided process of getting certification for early diagnosis credentials these people can't diagnosis. The families coming for EI are counting on getting EI through a medical diagnosis.

Pediatricians automatically get an evaluator; psychologists cannot, and have a 3 year period to get credentialed under EI.

Parents who are in denial for diagnosis need guidance from EI.

Kruti-There are models of different ways to do diagnostics in different states in order to reduce waiting times we should look at.

Another recommendation is to Expand EI age to 5 years old - how to change the bill.

Maryland is another state that increased to age to 5.

V. Old Business


VI. Announcements

World Autism Day

Stephanie Brown - World Autism day at the state capital, the Governor has been invited and several local legislators, and Representative Conroy. There is much to advocate for but we want to make improvements for the providers. We will have a committee this week. April 2 8:00 to 2:00 is the date and time.

VII. Next Steps


EI enhance diagnosis

Work with Ann Frieburg, explore EI age extension

The public acts to amend for clarity they are quite old and need updating so we can pass around the committee.

VIII. 2020 Calendar year tentative schedule

Thursday May14, 2020 10:00 A.M. to noon

Thursday August 20, 2020 10:00 A.M. to noon

Thursday November 12, 2020 10:00 A.M. to noon