May 10, 2011 Illinois Autism Task Force Meeting


May 10, 2011

1:00 PM - 3:00 PM


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

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


  1. Introductions and Welcome
  2. Division Updates
  3. Budget Updates
    1. Plans for PUNS
    2. Ligas Update
  4. Workgroup Updates
    1. Information Clearinghouse Update Report
    2. Training/Education Update Report
  5. Report on Act Early Summit
  6. Charting the system
  7. Next Steps
  8. 2011 Meeting Schedule
    1. August 9, 2011
    2. November 8, 2011

Meeting Minutes


  • Dr. Edwin Cook
  • Grace Hou
  • Brian Rubin
  • Ruth Ann Sikora
  • Sherry Ladislas
  • Patti Boheme
  • Georgia Winson
  • Jessie Decker
  • Terry Herbstritt
  • Randy Staton
  • Susan Szekely
  • Audrey Gorman
  • Constance Williams
  • Chris Kennedy
  • Ellen Adcock
  • Eileen DeRoze
  • Marie Weissbourd
  • Joseph Turner
  • Ann Cutler
  • Christine Hammond


  • Ruth Snyder
  • Mo Buti
  • Dean Myles
  • Liz Klug


1. Introductions and Welcome:

Co-chair Brian Rubin opened the meeting requesting a round of introductions in Springfield and Chicago.

2. Division Updates:

DD Update:

(Joseph Turner) Director Teninty is no longer with the division. The budget process continues at this time, the division is still working on quality assurance issues and legislation efforts; proposals include:

Providers posting survey results on abuse and neglect.

Reviewing background checks

Establish monitoring and receivership rules - to take control of a center in the need arises.

The division is adding on Children and Adolescents for "Support Services Teams". Referrals are made through the PAS agencies, there have been 250 referrals. The children and adolescents may be complex because there may be a need to go into schools.

DRS Update:

(Randy Staton) currently have a training unit working with TACE. Monitoring and training region 5 to develop counselor training program. Offering mandatory Web based training for counselors.

DRS still has ARRA funds and are working with DMH, established "braided funding" which is providing funding from both division to provide services to a person. The division is still working with DD to start this process. The meetings with DD are on hold since Director Teninty left but the plan is to continue with this.

The division also has ARRA funds for community college tuition until 09/30/11

The division is also working with CVS pharmacy

Questions arose regarding HFS and the Managed Care Plan. (Although there was no HFS representative Joe Turner was able to answer questions regarding the Managed care program). Many hospitals who take Medicaid were apprehensive to sign up for the Managed care. HFS has been trying to get hospitals to sign up. Many hospitals felt the program was going to go away, HFS has been going to the hospitals to educate them that they will get paid.

By 2015 approximately 50% of the hospitals will be signed up with the managed care, HFS has extended the sign up period.

Question regarding the DD/DRS meeting regarding supportive employment. It was stated that those meetings and work will continue.

Action Items
  • Action Item: Schedule a meeting between DD and DRS take place during the interim and report on for the next Task Force meeting.
  • Action Item: Regarding the Web based training for counselors the task force asked that training materials be shared with this council.
  • Action Item: DRS also suggested that John Marchioro in DHS bureau of training work with the ATF subcommittee on training and education.
DMH Update:

(Constance Williams) Budget impact, cuts in Medicaid will affect all programs across the board.

EI Update: (Eileen DeRoze) Illinois Interagency Council on Early Intervention had their first service delivery work group to review service delivery models.

Question regarding if someone with Autism expertise was on the committee.

Action Items

Action Item: Eileen will provide a list of who is on this committee.

3. Budget Updates:

Illinois is striving to pass budget by the end of May with appropriations. The budget was based on significant cuts to Human Services. Spending limits are on state government and The DHS budget will rely on reorganization of services. There is a perceived disproportionate cut to Human Services. The Task force was asked to read the most recent report on FY 12 Human Service Budget by the Illinois Human Services Commission (pdf).

Overall there will be a 6% cut to Medicaid services, EI may be OK, No dollars for transition from SODC to communities, deep cuts to DASA, cuts to TANFF, and GRF-Grants overall cuts.

There have been many appropriations hearings this year; the overriding issue is continued cuts to the community and significant decreases to the SODC's with the thought that IL has too many institutions. We have many challenges and we are bound by the MOU in place with the bargaining union which states we can't close any facilities at this time.

PUNS Update:

Dependant on the budget

  • 2008: 255 selected, 107 with ASD
  • 2009: 360 selected, 122 with ASD
  • 2010: 306 selected, 61 with ASD

Currently waiting to see funding before new selections are made, 21,000 people on list, 3100 with ASD. There is a cap on the number of waivers allowed. There are also selection process/criteria.


06/15 is the hearing to finalize agreement. Have 3 more days to file objections. Notice of settlement letters will go out to all potential class members. SODC individuals were not in the class action.

If the state agrees we have to fund it, right now it is not in any budget. We will have to go to the General Assembly to budget for this. We won't submit a budget until the consent decree is actually signed. We still need a monitor, a plan, and a budget plan.

Right now the trend has been not to fill ICF beds.

Discussion on unified budgeting for long term care - money follows the person and crosses over many different agencies. Allowing a 4% transfer among lines was passed in the Senate, with the desire to have more budget flexibility.

4. Subcommittee Reports:

Autism Information Clearinghouse:

Report distributed with the agenda. Information Clearinghouse had two meetings covering focus groups and what to do differently if we considered doing more. The Clearinghouse is now back to working on the "finding help in Illinois" section of the website. We are currently drafting an outline. The group will also be adding a member and also extend the invitation for anyone to join. We encourage those who have a professional expertise and anyone with an interest in web design as we continue to gather appropriate content for the site. We still have a vetting agreement in place regarding what content goes up on the site.

 Training and Education:

Report distributed with the agenda. The committee met two times, the committee began research in best practices in other states and what Illinois currently offers. Given the broad subject matter and the amount that needs to be done, this was not the time to propose mandated training. The committee felt that at this time many agencies are strapped with additional cuts to budgets and clearly there should be more training but at this time anything mandated has a good chance of backfiring. It is a large task with a lot of needs and the concern is there are a lot of places to cover. The committee felt they needed to continue to meet, bring some other people to the table (ISBE, Universities, Credentialing agencies, DHS bureau of training). It was stated this should be a long term goal of the Task Force and they would continue to work on a path to get there.

Discussion followed on facilitating voluntary training, professional credentialing and licensing criteria for people working with Autism. There is difficulty in just identifying what the basic level of training need is. Many positive developments are coming out of medical pediatrics which is a required rotation for physicians.AAP has policy statements on Autism screening and diagnostics.

5. Act Early Summit: (Georgia Winson, Ann Cutler)

The CDC is trying to help States with early screening.

We are making progress with screening, Medicaid billing has increased over the past few years although some areas are lacking.

LEND and TAP will work together

A key outcome is better data - each state had a lack of appropriate data. Currently working on an Autism registry.

Illinois logic model:

Diagnosis specific data are not actually logged beyond a 30% delay. There is a dramatic undercount of kids with ASD. A child comes in with delay and the primary or secondary diagnosis doesn't get updated. Plans are not driven by diagnosis.

This is a training issue with service coordinators to make sure data gets added and updated.

Therapists have a view point that Autism diagnosis is not essential. Providers need more training. They are not referring for ASD and getting a developmental delay diagnosis.

Parents have a reluctance of Autism diagnosis as opposed to DD due to the services received. However they are not getting the quality of service they need if not getting the Autism diagnosis. We should do everything to push the appropriate diagnosis so we can to get kids into appropriate services.

Discussion followed about the "labeling" of kids and kids should receive individualized services not services directed under a Label. The state should not throw dollars just to get kids a label and to facilitate conversation about it.

Response was that every child needs an individualized care plan; a proper diagnosis is not a "label". The earlier the kids get the proper treatment the better, the child pays the ultimate price of not getting diagnosed as soon as possible. Unfortunately, as it stands now appropriate diagnostic labels drive funding. We have to show we are serving people with autism with data. Currently the children are there but they are not being identified.

A recommendation was that the task force should enact registration to support voluntary ASD registry.

Chris Kennedy stated the legislation is already there 410 IL CS 201-1 provides for reporting between agencies and professionals give diagnosis. We would have to find someone to fund it, the legislature is already there.

The Task force should develop a consensus about this. Develop a roadmap on how we should proceed, do we need a different bill specifically have a registry.

Any type of registry would be voluntary

The first thing we need to do is look at what we can do internally that doesn't require any funding

Action Item
  • Action Item: Copy of the existing statute out to the task force. Chris and Joe to research what type of data already exists for review at the next meeting. Before the next meeting work with DD, CHD/EI and see what we can do without additional funds.
  • Action Item: Circulate I page brief and bill "Autism Treatment acceleration Act" What would be concerns in endorsing this bill, should the task force support this
  • Action Item: circulate "Combating Autism Act" to discuss at the next meeting.

Georgia also suggested we should create a flyer to send to providers about getting diagnosis, this should be supported by ATF. They would work on a flyer.

CPS has been concerned by the quality and accuracy of reports they are getting form outside provider agencies. We want them to diagnose but those agencies may be stretched. Medicaid will not pay for psychologists so the schools have to do it. CPS has only 3 evaluators in the city.

There is a process to get the state to pay for services however it is not an easy process.

Other suggestions for the task force from the Summit discussion:

Show what good diagnostics should include.

Better utilization of EPSDT to allow reimbursement of Behavior Analyst, Psychologist. Could receive Medicaid match. The task force may want to consider a white paper. It would allow for the expansion of services.

Action Item

Action Item: Georgia and Ann and perhaps other members should form subcommittee to make more formal recommendations to the committee.

6. Charting the Systems:

Preliminary review of the Charting the system charts. Developed for task force members to familiarize themselves with the services DHS has. Developed as a visualization of each system, crosswalk of all agencies. Also to e used to find gaps and roadblocks in service.

Looked at an additional template of a flow chart which will be circulated to members.

Discussed this as a tool for the website.

Children's waivers are missing.

Will continue to discuss for the next meeting

7. Other

  • Minutes from February 2011 meeting approved, will be posted on DHS website.
  • Next meeting August 9, 2011.
  • Next meeting - formal introductions for new members.