August 9, 2011 Illinois Autism Task Force Meeting


Open to the Public.


August 9, 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
  4. Chair Reports
    1. Meeting with HFS on Integrated Care
  5. Workgroup Updates
    1. Information Clearinghouse Update Report
    2. Training/Education Update Report
  6. Autism Research Fund Update
  7. Reports on existing Diagnosis Data (EI/DDD)
  8. Act Early Committee
  9. Charting the System
  10. Next Steps
  11. 2011 Meeting Schedule
  • November 8, 2011

Meeting Minutes

Illinois Department of Human Services
Autism Taskforce Meeting

August 9, 2011

1:00 PM to 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


  • Dr. Edwin Cook
  • Brian Rubin
  • Grace Hou
  • Ruth Ann Sikora
  • Sherry Ladislas
  • Patti Boheme
  • Georgia Winson
  • Jessie Decker
  • Terry Herbstritt
  • Randy Staton
  • Susan Szekely
  • Dr. Constance Williams
  • Ellen Adcock
  • Ann Cutler
  • Christine Hammond
  • Seth Harkins
  • Carl LaMell
  • Janet Gully
  • Dr. Geunyeong Pyo
  • Tracy Aldridge


  • Julie Hamos
  • Benjamin Rubin
  • Mo Buti, Dean Myles
  • Liz Klug
  • Bridget O'Conner
  • Kimiko Patterson
  • Molly Losh
  • Dr. Valerie Nan-Clares

1. Introductions and Welcome:

Co-chair Brian Rubin opened the meeting requesting a round of introductions in Springfield and Chicago. Encouraged everyone to submit biographies.

2. Division Updates:

DD Update:

(Tracy Aldridge) Search for new DD Director continues, however per Grace an offer was made to a potential new director.

CILA Act now a requirement to post among others: quality information - abuse and neglect reports and annual employee background checks.

Support Service teams program continues to make progress

Referrals for Children's and Adolescent Puns list - approximately 4000 active individuals with ASD

DRS Update: (Randy Staton) Robert Kilbury stepped down as Director of DRS, Rob has been the longest serving DHS Director and we thank him for his service. Kris Smith will be the interim director; she had a long background working in DRS. A search for a new director will begin just as we did the search for the DD director.

ARRA funds now coming to an end, billing is up to 08/31, on 09/30 the money will not be available.

As of 07/11 this is the second straight year of decreased rehabilitation case closures, and increased number of referrals.

The media ad campaign will continue.

A question was raised by Ruth Ann regarding the DRS/DD collaboration in regards to ASD population and supportive employment and sheltered employment. The 2012 renewal of the Adult waiver is due; we need to go back to the original transition roadmap written in 2005.

Action Plan: Establish a committee to formalize a report. Composed of Ruth Ann Sikora, Tracy Aldridge, Randy Staton, and Susan Szekely. Chris will organize.

ISBE Update: (Ryan Sturm) will continue to gather information for the Training Grid. Grace Hou also discussed the IICC group which she is chair for and focuses on transition services coordination between ISBE and DHS. Chris will send out notice for IICC meeting to all members, it is an open meeting.

DMH Update: No updates

EI Update:

(Janet Gully) Updates on data collection which is an agenda item later in the meeting

3. Budget Updates:

Handout on DHS Agency Budget for FY2012 presented.

The budget will be a difficult challenge large cuts need to be implemented in a short time. It is difficult to contract the system due the mandates we have. We are struggling on how this is to be implemented. Due to previous years of cuts there is not many areas left to cut.

4. Chair Reports:

Meeting with HFS on Integrated Care

Director Julie Hamos of HFS joined the group for discussion on the Integrated Care Program.

Concerns were raised particularly from parents, the two managed care companies are "Aetna Better Health" and "Allini Care".

Overview of the Program:

Illinois began a pilot program with an RFP for integrated care. The program took years to roll out due to push back from families, providers, and advocates. Part of problem was Illinois history of bad experience with managed care however things have changed since then and many states have demonstrated success with their programs/models.

Two vendors were selected Aetna Better Health and Allini Care. The program was designed collaboratively however there has been unwillingness for many providers to participate and sign up; these are providers who are currently serving Medicaid patients, the same patients they will not be able to serve if they do not sign up.

The benefit to providers is they can have a single contract and they will get paid faster. The provider community needs to be brought along. It is also important that parents are actively engaged and coordinated on this.

There are also systemic issues with the 2 vendors which HFS is actively handling and would still encourage continuous feedback, these companies need to resolve their issues. HFS staff is following up on these items.

Dr. Cook brought up a few items

  1. If a person sees a physician not part of the coverage, any Rx's prescribed should still be covered by the plan.
  2. Some providers are denying they are on the provider list even though they are listed.

The physicians are coming around slowly - it's a matter of marketing, education, how it's being presented. Some providers are just getting the word.

There are still some elements of coordination that need to be resolved, many questions on the paperwork involved, and the website could be clearer on the directions for Providers.

  • With managed care there has always been a sense of disbelief in Illinois, Illinois has had a bad experience with managed care and it never came back to IL.
  • Most states have managed care for all of Medicaid populations
  • Managed care is different than what it used to be
  • Illinois wants to test some new models - this all depends on willing providers, new types of models have different growing pains.

We also hear positive stories of people who never had care and are getting care with the managed care program for the first time.

The co-chairs commented on how Julie's presence here today has made it encouraging and open to what's happening especially in the social service groups.

Other items of concern:

Block grants could be a concern

Healthcare reform offers lots of ways for states to develop new programs

Integration between behavioral health and chronic care

Discussion was opened for questions:

Question regarding the number of sign ups

40,000 were the sign up goal, currently 28,000 have signed up, and the rest of the population will be assigned. There will be further dialogue on this issue.

Another question about sharing this information to parents and consumers to relieve anxiety.

Because the HFS staff is not large enough to disseminate this kind of information we might have to rely on possible Webinars. Also Aetna and Allini should be doing some of this information sharing. We should think about how to structure that, they have come to all the stakeholders meetings but we need to recognize the community.

5. Workgroup Updates:

a. Autism Information Clearinghouse:

(Ruth Ann Sikora) Working on content, breaking out into small workgroups and a planned face to face meeting for working on content.

b. Training and Education:

(Patti Boheme) Everyone received the training grid which is a compilation of Autism training throughout Illinois. The training referenced should be predictable and regularly scheduled. At this point we are not listing conferences. The subcommittee is still looking for more, if anyone has trainings which are not listed they should send to Chris.

The training grid was shared with the clearinghouse to add to the website in the future.

One of the reasons for the compilation was to look for gaps in Illinois. We have found some trends

Medical Personnel, Rural areas, lower income, EI-Providers, Home Providers.

Right now Fiscal times are tough to mandate any training so our first goal was to look at what we have and compile it.

We also looked closely at DSP training, the committee felt there should be more training in this arena but there is a cap on DSP training hours.

The task force felt that we should still propose the increase in the DSP training it should be on record that we support it.

There was more discussion on the information clearinghouse include one time conferences on the website. The issue is that conferences need to be evidence based.

6. Autism Research Fund Update:

(Chris Hammond) The committee has met and a Draft RFI to solicit information from Illinois research bodies has been written. We will update the members when the RFI get posted.

7. Reports on Existing Diagnosis Data (EI/DDD)

(Janet Gully) (Janet Gully) At the June 9, 2011 Child and Family Connections (CFC) Managers meeting, CFC Managers were asked to have service coordinators review assigned cases, identify children with autism spectrum disorder (ASD) diagnoses, and enter the diagnoses codes in the Cornerstone system as either a primary or secondary diagnoses. On an ongoing way, service coordinators have been asked to enter diagnosis codes as soon as they become available, (i.e. upon eligibility determinations, at six month/annual reviews, whenever notification is provided) particularly in regards to ASD diagnoses. Previously we had 30 children now we are up to 128 children with the diagnosis (primary and secondary diagnosis)

(Tracy Aldridge) On the Puns list there are 4958 individuals with ASD registered and looking for Service. 3900 are active cases with the diagnosis out of 20,000 (20%). This number is not reflective of the population as many people on the PUNs list are not representative of high functioning ASD who may not get onto the Puns list.

CPS has 3900 ASD out of 50,000 children we don't know how many of those children are getting into PUNS. None of the data completely matches up.

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

A statewide committee was developed to work on EI identification issues. They were to coordinate thoughts and action plans with state agencies. It is important to tie this in with the ATF and Act Early team as well as not duplicating efforts.

Action Item: Georgia and Ann will formalize the committee and the committee will be established and report back to the ATF.

9. Charting the Systems:

The chart is an inventory of services offered by DHS and what services are eligible to a person with ASD. The chart will be enhanced to add ISBE.

Action Item: Chris will work with Ryan on this.

The next step are what services in this chart are operationally not working as anticipated and that needs to be brought back to the task force. We are asking for specific examples where ASD may not qualify. This information should be sent to Chris.

10. Other

Ruth Ann stated the PAS manual has been updated and may have implications she will send out link.

Minutes from May 2011 meeting approved, will be posted on DHS website.

11. 2011 next Meeting Schedule

Next meeting November 8, 2011.