May 8, 2012 Illinois Autism Task Force Meeting

Helping Families. Supporting Communities. Empowering Individuals.

Illinois Department of Human Services, Autism Task Force Meeting

When

May 8, 2012

1 - 3pm

Where

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

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

Agenda

  1. Introductions
  2. Division Updates (DDD, EI, DRS,DMH, ISBE)
  3. Budget Updates
  4. Planning for the Future of Services for Persons on the Autism Spectrum
  5. Workgroup Updates
    1. Information Clearinghouse Update Report
    2. Training/Education Update Report
    3. DRS/DD Subcommittee
    4. Act Early Subcommittee
  6. Autism Scientific Review Committee
  7. Next Steps
  8. 2012 Meeting Schedule
    1. August 14, 2012 (Guest Speaker Dr. Dana Brazdziunas)
    2. November 13, 2012

Meeting Minutes

Attendees:

Dr. Edwin Cook, Brian Rubin, Kevin Casey, Ruth Ann Sikora, Sherry Ladislas, Patti Boheme, Randy Staton, Christine Hammond, Dean Myles, Lucy Bilaver, Audrey Gorman, Tyrin Rencher, Seth Harkins, Ann Cutler, Eileen DeRoze, Geunyeon Pyo, Carl LaMell, Susan Szekely, Donna Brown, Valeria Nanclares, Representative Linda Chapa LaVia, Georgia Hillyer

Guests: Tim Edwards - PACTT, Debbie Malkinson - Parent, Juanona Brewster - American Academy of Pediatrics 

1. Introductions and Welcome:

Co-chair Brian Rubin opened the meeting with introductions.

2. Division Updates:

DD Update:

(Kevin Casey) Closure process continues at Jacksonville Developmental Center with the intent to close late October. We are in the beginning of planning process to close Murray Developmental Center.

PUNS pull - Pull of 800 people from the PUNS waiting list. 730 remain interested in receiving services. PAS agencies are working with families as we start building services. On July 1, 2013, we will have to do another pull of 1000 in the system from the waiting list. Crisis groups would be at the top of the list. A question was asked about how many people with Autism are on that list, and how represented is Autism?

EI Update:

(Eileen DeRoze) The Division is coming into compliance with new regulations. Interacting with child and family connections-updating the procedure manual and rolling it out. Hope to improve data collection. Discussion followed on a formal process in EI for individuals to get into the PUNS system, this needs to be reinforced.

DRS Update:

(Randy Staton) A parent information meeting is scheduled at the Lisle library for 05/16/12. What parents can expect with vocational and job support.

DRS continue to establish relationships for referrals with PepsiCo, Walgreens, and CVS.

DMH Update:

No updates

ISBE Update: 

(Donna Brown) ISBE is making an effort to get PUNS information out to schools. It is posted on the website and Special Ed parent website. We would like to use the flyer developed from Little Friends to get out to parents. Parents get confused going through PAS agencies for the first time. We are focus monitoring when we meet with parents. There are different Puns brochures available - the PAS agencies have developed their own. Dr. Nanclares volunteered to have the Little Friends brochure translated to Spanish. Kevin Casey stated he would like to see the brochures prior to approving for use as it's important we are providing current information.

3. Budget Updates:

Budget is in mid-process, the hearing has been held for all of DHS. It will be late May to early June for negotiations. Anything is vulnerable.

Brian asked Dr. Cook to give a short update on the group he was working on regarding the DSM-5. Dr Cook stated he is working with a National Group looking at diagnosis and definitions. They are currently in the comment period. The committee looking at the DSM-5, looking at criteria, we don't know yet if this will make the numbers go up or down. Dr. Cook described the new differences in the criteria to the group. Initial field trials show no change in who is being diagnosed - prevalence could remain the same. The best input comes from people on the spectrum who can speak for themselves.

4. Plan for Services Proposal

Kevin Casey presented the draft plan for services proposal (plan for the development of needed services) tasking for a work group. Kevin stated the subcommittee would benefit if it consists of families and people on the spectrum as members. The completed plan would be submitted to other groups within the state for comment. The subcommittee would decide if they felt they would benefit from assistance of a facilitator. The group would decide how often to meet. DD could initially staff this process.

The first step would be to complete an environmental scan. Kevin's notes for the proposal were distributed via email to the Task Force.

The group should meet fairly regularly over several months and develop the proposal, allow for review time and outside review time and present to government.

Brian responded that we do have an adult service committee and we can splinter the committee off of this. We would need someone from the department who is a PUNS expert in terms of the data. The data needs to be better organized as to what level of data we keep within the system.

Rep Chapa LaVia stated we should be looking broader from cradle to grave, although the population without services is mainly adults; there are kids in school who need increased level of support at home.

Ruth Ann asked about the Open Door Initiative - wrapping services around individuals to meet unique needs.

Other comments were to take a look at it from different perspectives - for example from the school perspective, from the adult perspective, parents, and self - advocates. We may need to break it into pieces and bring it back as a whole.

A facilitator would have a different role than a co-chair.

Audrey Gorman suggested we identify other people who are willing to be co-chairs

Brian stated we have resources in this room, they know what happened before and they can bring guidance and direction. Brian referred to Patti Boheme and Carl LaMell.

Regarding facilitators - we have gone to third party facilitators for something strategic and important. Co-chairs talk with that facilitator. Facilitators make people feed heard. These people have experience in doing this. We may have to get volunteers or look into who might be able to pay.

Discussion followed about having the committee meet first and see what they need.

Have a preliminary meeting first, then consider a facilitator if needed - talk to Kevin if we can't get a volunteer. Make sure we have a good cross section of representatives, including self-advocates, parents of children at each age.

Another suggestion perhaps one co-chair from an organization such as ARC - we should look for leadership to come from families and people who are advocates.

Brian stated that he, Ed, and Kevin will talk about a structure that would be appropriate; we will come together for a meeting after this meeting.

A suggestion from another member was made that Patti Boheme and Carl LaMell would make good Co-chairs and have experience. We will get a lot of input from this committee.

Kevin will look at the budget in the event we need a facilitator for active planning part of the process.

The data gathering would come first; some of the data may be subjective. The division will participate but only if families and self advocates dominate the process.

Ed Cook suggested we poll all the task force as to their interest and participation. It will take a substantial commitment and will be a considerable sacrifice of time. DHS will help provide structure, but the group should be very parent, advocate, individual led.

When the project is complete we will advise and give a formal presentation to the Secretary of DHS, the superintendent of ISBE, and the legislatures.

It will be important to get a handle on the numbers of adults and how many are not getting services - i.e. which pot is empty.

Brian summarized the project scope - "If we could fix the system what would it look like"? The task force should submit names if you would like to be part of the committee or recommend someone. We need information as to who you are - if you're a parent etc. We want to create a workable committee.

The 2005 report is the roadmap we will refer to.

The co-chairs will schedule a meeting regarding the project.

5. Workgroup Updates:

a. Autism Information Clearinghouse:

(Ruth Ann Sikora) We have met a few times since last task force. The website presence AutismIllinois.gov will bring you to the DHS autism Clearinghouse website. We are working on some corrections on the site. Charting the systems should be mounted under finding help in Illinois. The group began looking at templates for the site. The clearinghouse asked for a meeting with the co-chairs to be scheduled. This meeting will be scheduled after the co-chairs project meeting.

b. Training and Education:

(Patti Boheme) Patti gave a little history on the background of the training committee for new members. At the last meeting we discussed categorizing the training by audience, updating on a biennial schedule, and determining a method to bring in new training. In the latter we would come up with a brief statement of how to propose training would be added to the list.

c. Act Early Subcommittee:

Physician training is in progress and going well.

d. DRS/DD subcommittee

Ruth Ann Sikora raised the issue that there were still some pending questions with regards to the memo of clarification on waiver services in regards to ASD individuals who were underserved from DRS.

DRS has a meeting with parents and advocates on May 16 coming up to clarify the DD waiver transition.

There will also be a meeting between Kevin Casey and Kris Smith on this issue.

Ruth Ann added they need to find out about the 2002 PAS manual also.

In regard to the PAS manual follow up and specific fact checking will be completed and it will be part of the next agenda.

6. Autism Research Fund Update

Three responses to the RFI

7. Next Steps

  • August 14 meeting will be a guest speaker to discuss initiative to make medical diagnostics consistent and for earlier diagnosis.
  • Future agenda considerations Screening and referral procedures and flow of services. Who are the leading clinicians and what type of waiting lists are we looking at for individuals to get help by these specialized clinicians.
  • Follow up on the PUNS flyers and also the translating of the Little Friends document.

8. Meeting Schedule

August 14, 2012

November 13, 2012