February 8, 2011 Illinois Autism Taskforce Meeting

Helping Families. Supporting Communities. Empowering Individuals.

Locations

  • Springfield: 100 S. Grand Avenue East, 3rd Floor Executive Video Conference Room
  • Chicago: 401 S. Clinton, 7th Floor, Executive Video Conference Room

Attendees:

  • Dr. Edwin Cook
  • Grace Hou
  • Brian Rubin
  • Ruth Ann Sikora
  • Sherry Ladislas
  • Patti Boheme
  • Georgia Winson
  • Jessie Decker
  • Seth Harkins
  • Terry Herbstritt
  • Tracy Aldridge
  • Randy Staton
  • Susan Szekely
  • Mary Kay Betz
  • Audrey Gorman
  • Constance Williams
  • Carl LaMell
  • Lilia Teninty
  • Chris Kennedy
  • Elina Manghi
  • Ellen Adcock
  • Eileen Deroze
  • Christine Hammond

Guests:

  • Ruth Snyder
  • Karen Sweeney
  • Tim Baker
  • Liz Klug

Minutes

1. Introductions and Welcome:

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

2. Division Updates:

DRS Update: (Randy Staton) Continues to work on the ARRA initiative with Community Colleges. Overall referrals to DRS continue to be down this year. DRS have an ad campaign via radio.

DMH Update: (Constance Williams) MH continues to work on integrated care packages. Continue to work on the "Williams" lawsuit which was settled last fall. Draft plan to present next week and opportunity for public to comment. The implementation plan that passes needs to be realistic, funded and monitored. There is a 3rd lawsuit in Illinois related to Cook County Nursing facilities.

DD Update: (Lilia Teninty presented at the end of the meeting) Service and support teams for crisis situation. Teams go in and do evaluation of the crisis and intervene as necessary. The process has been going well. We work with service staff to get resources, short term interventions and sometimes stay with the person. The program is not designed to do the work of the direct support staff; the community agency still provides the direct care. It's currently involved with serving children, the DD funded children's population networks have been supported when needed.

3. Budget Updates:

Uncertain how the overall budget will be addressed at this time, Governors budget address next week.

4. Autism Information Clearinghouse:

The Autism Clearinghouse held its first parent focus group on January 29, 2011 at the Lisle Public Library. Twenty participants were invited of which seventeen showed up. The breakdown of families invited is as follows:

Age 7-13, 6 parents, Age 14-17, 6 parents, Age 18 and up, 8 parents.

We had an abundance of responses throughout the state. We will be going through the information for what will be shared with the ATF. We will use the focus group info for structuring what will be on the website. The feedback from people around the state was they wanted to see this occur in other areas around the state.

The task force discussed the possibility of holding focus groups via video.

5. Critical Issues:

Charting the System:

A draft worksheet was distributed listing DHS services and eligibility as well as how to apply for services. The goal of mapping out all of the services is to identify gaps in services and where the ATF needs to focus moving forward. DHS will continue to finalize the worksheet for further discussion at the next meeting. The worksheet is not meant for distribution at this time except to ATF members.

Education and Training:

The issue of training is that there is no mandated training in the state for Autism. Problems are encountered for persons with autism because professionals, therapists, teachers, and aids etc are improperly trained to work with persons with ASD.

ATF decided to form a subcommittee to study the existing training and what proposals we can make and policies for training. The committee can look at 1. What we are doing now 2. What are other states doing. What is funded. The committee must keep in mind that it must be realistic and meaningful if it is going to be policy.

Discussion followed on what training is already mandated and some adult training and job site training is currently mandated - training under DD includes modules on Autism. What exactly would we be recommending - advocating a minimum requirement can get watered down? We want continuity across all levels but training has to relate to each particular service.

The ATF needs to differentiate from policy recommendations and implementation, and what the gap is we are trying to fill.

  1. Should there be a base level of training for all individuals
  2. There is a cost factor of limited dollars

The committee should put some ideas together, what is consistent in the system that identifies this as a critical issue. The committee will consist of

  1. Patty Boheme Chair
  2. Carl LaMell will designate someone from Clear brook
  3. Jessie Decker
  4. Sherry Ladislas
  5. Liz Klug
  6. Elina Manghi
  7. Ruth Snyder

6. Act Early Summit:

Handout distributed on Act Early Summit Outcomes

  • Outcome#1 data/counts of children with ASD in EI, ISBE and PUNS systems will approach national prevalence rates
  • Outcome#2 Families and workforce are competent to support individuals with ASD across a variety of environments (training)
  • Outcome#3 Funding available to provide community based services and support

The full packet will be sent out to all members again.

Discussion followed regarding the early diagnosis of Autism. Many parents are not willing to put the Autism diagnosis on their children before the age of 8, as they are still dealing with the grief. We have to do a better job with diagnosis and to walk parents through grief and get the diagnosis at EI and not wait until school age.

The top 3 needs of EI in training, most children enter EI without a diagnosis and EI will pay for medical diagnostics. Parents at the EI stage need to know what to do after diagnosis.

At the focus group many of the participants stated that EI was a lifesaver for them. One parent stated that EI should not mean a certain age but the earliest time a child is diagnosed.

Georgia will send out the documents again with the relevant items highlighted.

7. Strategic Plan:

DHS Division or Developmental Disabilities Strategic plan for FY 2011 -2017 was distributed at last meeting for discussion today's meeting. No questions were submitted in advance per request. The document is a compilation of work from resolutions recently passed, family meetings etc. It is an in depth person centered service system. The plan places emphasis on a professionally trained workforce.

8. Ligas Lawsuit:

There has been agreement on the Ligas lawsuit and it is scheduled to be signed off on 06/15/11.

The Ligas settlement addresses services for persons in ICFs/DD; person's requesting community based services. The individual must indicate they want to leave IDFDD. It will go to everyone who lives in ICFDD or on the PUNS list.

Within six years of approval those person's in ICFDD who have requested community services will move to community-based services.

For those individuals on the PUNS waiting list the state will serve 3,000 of these individuals over the next six years. 1,000 within the first year two years and 500 each year for the next four years for home based services and community based residential settings.

There are additional budget considerations with this settlement.

Any pulls from PUNS under LIGAS will only be adults.

Children's waivers were recently renewed- 5 year renewal.

9. Call for Membership:

We are still looking for new members especially needed are professional in the Mental Illness field with emphasis in ASD. We are also looking for members with ASD and others who can provide a key voice. Send any recommendations to Christine Hammond.

10. Next steps:

Bring up Recommendations of Summit, what areas the task force would consider focusing on.

11. Next Meeting:

  • May 10, 2011
  • August 9, 2011
  • November 8, 2011