August 14, 2012 Illinois Autism Task Force Meeting

Helping Families. Supporting Communities. Empowering Individuals.

Illinois Department of Human Services

Autism Taskforce Meeting

When:

August 14, 2012

1 - 3pm

Where:

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

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

Agenda:

  1. Introductions
  2. Budget Update
  3. Planning for the Future of Services for Persons on the Autism Spectrum
  4. Brief Workgroup Updates
    1. Training/Education Update Report
    2. Information Clearinghouse Update Report
    3. Act Early Subcommittee
    4. Autism Scientific Review Committee Update
    5. Presentation Dr. Dana Brazdziunas (2:00 PM)
  5. Next Steps
  6. 2012 Meeting Schedule - November 13, 2012

Minutes

August 14, 2012

1:00 PM to 3:00 PM

Springfield: 100 S. Grand Avenue East, 3rd Floor Think Tank

Chicago: 401 S. Clinton, 7th Floor, Think Tank

Attendees:

Dr. Edwin Cook, Brian Rubin, Ruth Ann Sikora, Sherry Ladislas, Patti Boheme, Randy Staton, Christine Hammond, Dean Myles, Audrey Gorman, Tyrin Rancher, Eileen DeRoze, Geunyeong Pyo, Carl LaMell, Susan Szekely, Donna Brown, Valeria Nanclares, Representative Linda Chapa LaVia, Marie Weissbourd, Mary Kay Betz, Dr. Richard Ney, Elizabeth McKinney, Bronwyn Raines, Tracy Aldridge, Ellen Griffin, Liz Klug

Guests: Karen Fried - Little Leaves Behavioral Services, Dr. Dana Brazdziunas Lurie Children's Hospital, Lucy Bilaver. 

  1. Introductions and Welcome:

    Co-chair Brian Rubin opened the meeting with introductions. Brian gave a short background of the IATF to all the new participants in today's meeting.

  2. Budget Updates:

    No Report

  3. Planning for Future of Services for Persons on the Autism Spectrum:

    (Sherry Ladislas) The committee met and reviewed the written proposal submitted by Director Kevin Casey on what services should be like in Illinois. The first meeting was a small committee of members we discussed what our infrastructure is and agreed to keep the group small and bring in others as advisors.

    We created a matrix as to who would sit at the table based on the criteria that we felt was important to be represented and this is going around for members to fill out.

    We also discussed the scope of the project we decided the first step would be to look at the 2005 roadmap and use this as a guide to build off of.

    The group still needs to select co-chairs and agreed that a facilitator would be necessary Robin Cooper was mentioned as a possible facilitator.

    The committee also discussed the impact the new DSM5 might have on any planning processes.

    Brian added that there were products that came out of the 2005 roadmap including the children's waiver. We had also been instrumental in hiring a transition coordinator however after the person left there was not funding to keep the position.

  4. Workgroup Group Updates:
    1. Training and Education Update:

      (Patti Boheme) We have a training document/catalogue almost complete; it will be reviewed a final time before submitting to the clearinghouse.

    2. Information Clearinghouse:

      (Ruth Ann Sikora) We will be meeting in September working on selecting a template to move from the DHS site to a URL.

    3. Act Early Subcommittee:

      (Liz Klug) Met July 11, 2012, we are continuing to work toward a count of the children in EI with diagnosis.

      There are 16,422 children enrolled in ISBE in the Autism category. This is an increase to 1 in 126 and the numbers are starting to approximate the National prevalence.

      We are working on the ASD certificate program to provide education to professionals. We want to make this accessible to all Universities.

      We are exploring ways to support no English speaking, basic advances training for healthcare workers

      One area of focus was funding through reforms to Medicaid, and the ramifications of the Affordable Healthcare act.

      We continue to seek out additional partners and ways to share across regions. If anyone is interested in joining the group they can contact Ann Cutler.

  5. Division Updates:
    1. EI:

      (Eileen Deroze) EI has a new Bureau chief - Amy Tarr is the coordinator and Bureau Chief

    2. DD:

      (Tracy Aldridge) DD is busy with the closure of Jacksonville and working on increasing community resources and the increased capacity needed with closures and Ligas transition. We have an increased budget for the SS teams and have already served 700 individuals.

      Some comments were made about how the PUNS selection is made; there are a number of categories; 75 and older, in home, residential home, aging out of school, crisis, and emergency. Nobody is being pulled outside of Ligas right now, and it is very difficult to make it into selection right now if not in a crisis.

  6. Autism Scientific Review:

    We have received three applications and they are currently under review to be reviewed by September 7, 2012. The selection committee will meet the week after Sept 7 and make a selection.

  7. Other:

    A question was raised about the DSM5, how should the Autism Task Force address the public's fears about the new DSM5?

    Dr Cook responded: This is a broader agenda item the question is what does DHS do to define Autism and what does ISBE do to define Autism.

    ISBE does not use the DSM4 to define.

    It was recommended that we do whatever we currently do now.

    There has been much misinformation and people have raised issues that the approach will decrease the prevalence. That is not the case and it should streamline it.

    We should be able to talk more comprehensively about this in May or June.

    Brian suggested a presentation from ISBE and DD about current definition criteria for adults and children - the definition of Intellectual Disability. Is it driven by Medical - Educational vs. Medical model?

    Dr Cook suggested visiting the http://www.dsm5.org site to look at the proposed revisions. It is hard to say where the impact will be as we don't know how people will use the information. There are many children without a defined disorder. There is a good amount of confusion with conditions that don't belong with Autism. There is a concern that language and social disorders get put together. It is important how we advise on how it is interpreted, we need to track and be proactive.

  8. Presentation Dr. Dana Brazdziunas:

    Dr. Dana Brazdziunas is a developmental pediatrician at Lurie children's hospital, Director for Developmental Pediatrics.

    Dr. Brazdziunas stated she is representing an Ad Hoc group AAP which she and Ann Cutler chair. It is a subcommittee to improve diagnostics for kids under 3.

    For medical diagnostics there is a statewide variable where young kids go for diagnostics. The goal is to improve quality diagnostics and access - right now there are large waiting lists.

    An experienced group from eight area hospitals/clinics worked to put together standardized protocol using newer level 2 screeners (Wendy Stone Instrument) which resembles a mini toddler ADOS. Ill Masonic, UIC, Rush, Erickson Institute, Alexian Brothers, Christ, Loyola, Lurie Childrens.

    It is difficult and complicated to try and make a diagnosis on a one time visit. The tool takes 15 minutes for a cut off score if the child is at risk.

    Most children are referred from EI, or also the pediatrician from 18mos to 3 years.

    The diagnostics are paid by the State of Illinois EI program. It is a team assessment and the teams vary in composition (MD, OT, Speech, Psychology, social work etc). This differs as you have the medical portion as part of the diagnostic.

    All the protocols were really different at each Medical Center. So this was an effort to standardize across the state.

    With one time visits kids won't always show their characteristics and we also never know where the parent is in this process, they are very fearful.

    Most kids are probably not getting ADOS as they are to low functioning too do Module 1. * See clarification below:

    Minute Clarifications added 11/25/12

    The issue with the ADOS: It was largely not being done because the EI medical diagnostic is generally one visit and the child cannot tolerate all that testing in one day. We need a way to bring young children back for a second visit. For at least 1/2 of the children the module 1 was not appropriate. The Toddler ADOS will help up with that part of the problem.

    For children under three, it is too much to expect the child to complete cognitive, fine motor, speech/language testing and Toddler ADOS all in the same morning. The Toddler ADOS itself takes 45 minutes. We would like the EI medical diagnostic to become two visits- the first for history, physical, STAT (screening test for autism in two year olds) and cognitive/fine motor/language testing. Children under three with ASD concerns would come back for a second diagnostic visit (ADOS Toddler or Module 1) and discussion of diagnosis. Many families are overwhelmed by a onetime intense diagnostic visit. Note that the children we see are very young and autism may not have yet been brought up with the family.

    The committee has had 3 meetings and come up with a protocol; this has not been shared with EI at this time.

    7 of 8 of the centers agreed on a common protocol

    Training on the protocol Wendy Stone from Seattle will do training.

    We want to get feedback and speak to down state centers.

    Lastly we will look for funding to collect data and do research.

    1. Protocol:

      2 visits (not practical for 3 but would be ideal) a week or two apart

      1st visit hx, screening, speech

      2nd visit ADOS and any outside info gathered between the meetings, feedback

      The issue is to see the child fairly often, every 6 months (insurance is an issue). Follow up can be a challenge. After diagnosis want the primary care to do the follow up. Billing and coding is an issue right now also.

    2. Comments:

      suggestion was made to work with the CFC's

      comment about how recommendations would be handled. The recommendation part of the report becomes somewhat political.

       EI discussed that they ask that recommendations not go in the report but that the persons bring those recommendations to the IFSP team. The outcome of the IFSP determines what services are received.

      ISBE stated they always have to consider the outside recommendations but they don't have to be accepted.

      The co-chairs felt this discussion needed to be explored further and asked that for the next meeting we have a presentation by EI and invite the new EI director. "EI Medical Recommendations".

  9. Next Steps:

    November meeting date will be rescheduled to accommodate key participants in the EI discussion.