February 11, 2021, Illinois Autism Task Force Meeting

10am - 12pm

Agenda

  1. Introductions
    1. Meeting Guidelines (see below)
  2. Workgroup Updates
    1. Transition
      1. Employment first update
    2. Insurance
      1. ABA Medicaid update
      2. HB16
    3. Act Early
    4. Adult Services
      1. Purpose/Goals
  3. Division Updates- (DD, EI, DRS, DMH, ISBE)
  4. New Business
    1. Goals for 2021
  5. Old Business
  6. Division Updates- (DD, EI, DRS, DMH, ISBE)
  7. Announcements
  8. Next Steps
  9. 2021 Calendar year tentative schedule
    • Thursday May 13, 2021, 10:00 A.M. to noon
    • Thursday August 12, 2021, 10:00 A.M. to noon
    • Thursday November 18, 2021, 10:00 A.M. to noon

*Meeting will be held via Webex:

Illinois Department of Human Services Autism Taskforce Meeting Minutes

February 11, 2021 10AM - 12 PM

Introductions:

Autism Task Force

Dr. Acharya Kruti UIC-Act Early X
Bean Gloria DHS-DD X
Boheme Patti Little Friends Center for Autism X
Brott Amanda TAP X
Brown Stephanie Autism Society, Southern IL X
Buti Mo X
Dr. Cohen Amy UIUC-Champaign
Dacy Brian Life Tech
Dr. Daniels Rob Chicago Children's Clinic
The Honorable DiCianni Pete Commissioner, DuPage County Board X
DiVittorio Tony Clearbrook X
Forthofer Theresa Easter Seals-DuPage, Fox Valley X
Frieburg Ann DHS-EI
Dr. Fried Karen
Gizewski Candice Behavioral Perspective
Hammond Christine DHS-OAS X
Healy Sherry DHS-Employment First X
Herbstritt Terry PACTT Foundation/Parent X
Ladislas Sherry Trinity Service/Parent
Dr. Losh Molly Northwestern University
Dr. McKenney Elizabeth Southern Illinois University, Edwds
Onwuameze Nkechi IBHE X
Ovalle Matte Grupo-Salto
Pasha Zoubida Family Resource Center on Disabilities X
Powers Paula ISBE X
Dr. Roberts Megan Northwestern
Shinn Colleen Autism Speaks X
Sikora Ruth Ann Parent X
Stark Allison DHS-DD X
Weldon Sean DHS-DRS X
Dr. Williams Constance DHS/MH X

Partners

Bobby Rich Little City X
Dr. Cirinsione-Ulezi Nasiah X
Davis Ebonie X
Dysen Shannon TAP X
Estes Amanda Autism Collective X
Geslak David Exercise Connection X
Dr. Gamucio Ramiro X
Kelly Mary The Autism Program X
Pfister Amy X
Olson Kia BCBA X
Root Marla Insurance Coalition X
Roestel Carri Advocate, Act Early Ambassador X
Wagner Kristin DHS-DRS X
Dr. Widman Cheryl Parent X

Meeting Guidelines:

See above

Workgroup Updates

Employment First (not Autism sub-committee):

  • Sherry Healy reported. Great collaboration between EEOPD and the ATF Transition sub-committee group to be able to work together.
  • The EEOPD main group broke into subcommittees to look at the recommendations in the final EEOPD report of 2017, what is still relevant and how we can still reboot and narrow into areas so we can make a difference.
  • The arena is so big and so much could be done so it's been challenging hard to narrow down. One of the key items; Phil Milsk an attorney on EEOPD is working on two bills in the house. The first is regarding extending the school year until the end of the school year term rather than on an individual's 22 birthday. The second bill is regarding compensatory services due to COVID. It is very difficult during COVID for Special Education students to meet their goals.
  • We would like to present a united front HB 40/ HB 558, HB2748 and find a way to collaborate and consolidate. Looked at short term goals, long term goals the IICC has been absorbed by the ICDD and is responsible to continue this work. They are putting together a work group and what needs to move forward.
  • Self- determination training state- wide and data collection. Self- determination training goals, what happens to students when they leave the system? Are they getting connected appropriately to adult services and employment? It would be helpful to see what the real data shows us.

Transition Subcommittee:

  • Focus on ages 18 - 22 students with autism, these kids have the second lowest outcomes from employment.
  • We feel our teachers are not getting the transition training they need.
  • Kristin Wagner from DRS is going to join our transition committee for the task force.
  • Autism Workforce conversation- Discussion on the challenges individuals and parents are facing - Autism Workforce has spent 16 years working with ASD kids, we have expanded to 7 other companies in Illinois one or which is in Southern Illinois and another in Momence. We have two published case studies on our model. We have a federal grant with 8 universities and our role over the next 5 years is to help reduce the barriers to employment. We help VR agencies through training. One of the challenges is the response we get in looking for people for jobs in highly populated area. VR only sent us one person. We are reaching out to spread the message that jobs are coming, we don't know where to successfully recruit. We are reaching out to high schools in the area and its very laborious. What we are finding is there is a missing component when it comes to finding people. This is not just about the high end of the spectrum. There are different departments across the state in manufacturing jobs. We have had many conversations with DRS about this. Some of this currently can be due to COVID, but there is a system wide problem here.
  • "Windmills" Training program to focus on the employer and the employer education Hope we can touch base as we have vested interest in this.

Insurance:

  • HB16 Patti is reaching out to Deb Conroy, this bill helps to expand coverage. The letter to HFS went out a few weeks ago with attached letters representing 48 different agencies. Patti listed off the agencies.
  • Marla Root updated that she is working with HFS to get the providers trained. Children are starting to enter wait lists as we try to connect them with providers but there are not enough providers. The BCBA could only to supervise 8 RBT, we were able to move from RBT count to a clinical treatment count. Changed it to 320 weekly hours a BCBA can supervise. We teamed up with HFS to train the current providers on how to get into the impact system so billing will work, they had many challenges, HFS has been collaborative in this process.
  • For Behavioral assessment treatment planning service and Direct Behavioral treatment. Rates are published and those rates are extremely low -Ohio rates are $10.00 higher in a state that is cheaper to live in.
  • The rates are a barrier to access, we are educating the state on other treatment rates compared to the ABA reimbursement rate.
  • HFS is very open and we will talk about rates with them, but we have families waiting and waiting a long time. Trying to do this on the inside, but rates are an access issue.
  • We are also looking at rates for OT/PT, whatever the parent needs they should be getting access to that treatment and our job is to support that parent.

Discussion - do you have rates and barriers such as RDI and SIR, and what are the barriers in comparison with ABA- is there the same wait list we never hear discussion on those other therapies and the central stage always been ABA.

Marla will look at the CPT codes as long as it is evidence based.

Discussion - There are no CPT codes for REI therapies. Is it the creativity of the biller so the family gets the therapy? We do need to follow the outlines of the diagnostic codes to make sure that what we are doing is ethical.

Comment- we have been completely on remote learning. There are only 4 developmental pediatricians in the Chicago area.

Regarding the ABA Medicaid, any movement of appropriation can't be moved around to different areas, probably little money has been used in the ABA bucket. We also realize of our state and government money has been used for COVID.

Moving the 42 million must be done legislatively.

Medicaid benefit is in HFS budget, some was used to get kids some services.

Federal level hoping for a new day with the new administration. NACO - county board to respond to the autism issues and try to effect change at the federal level through NACO.

Encourage everyone to look at the bill they want comments on this.

There was previously a bill like this that did not end up passing. Right now, this is the strategy Deb Conroy has to get these services covered.

Discussion- this is clearly contributing to systemic racial inequities, many of the kids we serve they are all on Medicaid. Private insurance can get the services next week but not our kids. I don't know if the conversation on this had been had on this piece. Is there a way to emphasize this topic? In the letters this was addressed but it can really be brought to the forefront and this is the time to address this.

Theresa, we have a new fund (Easter Seals) to support black children in need of autism diagnostics can forward this to Chris.

Act Early:

  • Cari Roestel - we see these access question in the Act Early. The only way to get intervention is through EI. We are working to improve the understanding on what ABA is.
  • In EI the reimbursement rate is good, but it is difficult to be credentialed, many don't know it exists. We are working to identify kids as early as possible.
  • Providing education for families through EI on how to access help for their children hoping by end of March and April to distribute materials.
  • Working to understand the reimbursement experience with the insurance and what is the cost to the family.
  • EI covers BCBA but not comprehensive once maybe twice a week in a parent coaching level. Anything that would restrict them in the least restrictive environment.
  • Would like information to reframe how we talk about this to families.
  • Andrea Sagel- Would like guidance on diagnostic clinic- lingo that would help the family understand what is covered.

Adult Services (New Subcommittee to assemble):

  • Adult Services Committee: Ruth Ann, Wanda Malone, Debra vines, Sherri Healy. Looking at a process to formalize what the focus will be.
  • Structure - Possibly a survey to look at what we feel the priorities are for this group. We run the risk of it being unwieldy and we need to narrow in so we can move forward on key things we need to focus on.
  • Email Chris if interested in the committee and developing a survey and looking for a chair of this committee. It will function as a subcommittee since it encompasses a large area.

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

DD:

  • Regarding vaccines, effective February 25, people with disabilities will be included in the 1B group. ISC and DD staff have reached out to CILA providers to connect to local health departments. The age went down to 16. We added 100 additional locations. In the SODC we have had a very aggressive vaccination program for the residents and staff. 90% residents have the initial vaccination. We have a vigorous campaign for providers and individuals in the vaccine que. Link to webpage on recent current information as it relates to COVID, IDHS COVID-19 Information.
  • At DHS we are going to ensure that no one is excluded from any services- we have equitable services we are working on and how we can address this and make sure no one is denied services based on race.
  • The first contact for concern is the ISC and should be guiding the community and family. How are CILAs going to receive- connecting with the local pharmacy in their area or the local health department in some of the more rural areas. Still reaching out to a few that have not been connected.

Comment: Ray Graham association had Jewel/Osco come to one of their locations and coordinated. It was well organized.

Pactt have been connected with KodoCare in Joliet, the vaccine provider is contingent on the location of the provider.

DMH:

* Collaborating with the communities on vaccinations. All the state hospitals have the

opportunity to receive the vaccine.

* We are working with NAMI on COVID inequity and have suicide prevention. Help providers especially with telephone and tablets. Have a new 988 number.

Patti asks that if anyone has any resources for getting help that we need to share this. Links or organizations that can provide support.

New Business

Presentation for the Midwest autism consort by the co-chairs. Presented what the task force does, a lot of leaders in the field at these group. We had a good response; collaboration is so important.

Old Business

Announcements

  • Ramiro - offered help with new committees would like to be involved, EI might be a good fit.
  • Anyone interested in Adult services reach out to Christine
  • The Division of Developmental Disabilities provides regular updates on the COVID-19 Pandemic and its impact to those receiving DD services. Below is the link to review the most recent updates in DD as it relates to COVID-19. COVID 19 DD https://www.dhs.state.il.us/page.aspx?item=123451 *
  • DD also encourages all who have questions regarding needed/requested services to reach out to their respective Independent Service Coordination (ISC) agency who will guide them in accessing those services. DMH has been providing supports to these population throughout the Pandemic via our website with activities and information. This the webpage where information is updated as it become available. Lisa https://www.dhs.state.il.us/page.aspx?item=123603 VII.

Next Steps

2021 Calendar year tentative 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 Recording:

https://illinois.webex.com/webappng/sites/illinois/recording/50d3dcd295354e27b14c1f23750631b9/playback

Attendance:

Meeting number (access code): 177 424 7881

Meeting password: ATjBgmkA626

To join by phone:

+1-312-535-8110, United States Toll (Chicago)

+1-415-655-0002, US Toll

(please mute all phones when you are not speaking)

Meeting Guidelines

  • Sessions will be recorded.
  • Please keep your audio on mute so we can hear speakers clearly and unmute to speak.
  • Announce your name before speaking.
  • Actively listen and engage as fully as you would if we were in person.
  • Please do your best to stay on topic!
  • Share information respectfully to promote understanding, collegiality and avoid misunderstandings.
  • Allow people to share their thoughts and ideas completely and avoid interrupting.
  • Strive for balanced participation share but be brief and mindful of others who want to share
  • Identify barriers to our work AND provide suggestions to overcome these barriers.