August 8, 2019, The Autism Task Force Meeting

Illinois Department of Human Services
Autism Task Force Meeting

August 8, 2019

10am - 12pm

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

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

Conference Number: 888-494-4032 access 834-224-3963


  1. Introductions
  2. New Business
    1. Public comment (9/1) on ABA Medicaid coverage
    2. Marla Root - BCBS ABA provision
    3. N.B. Consent Decree
    4. Update Member Information
  3. Division Updates (DD, EI, DRS,DMH, ISBE)
  4. Workgroup Updates
    1. Transition
    2. Insurance
    3. Act Early
  5. Old Business
    1. BCBA
    2. Insurance bill progress
  6. Announcements
  7.  Next Steps
  8.  Next Meeting

Thursday November 7, 2019 10:00 A.M. to noon

I. Introductions:

Task Force:

Patti Boheme (Co-Chair) Little Friends 

Gloria Bean DHS-DDD 

Cynthia Brouillard Little Friends 

Zoubida Pasha Family Resource Center on Disabilities 

Mo Buti 

Jim Runyon Easter Seals Central 

Brian Dacy Total Spectrum

Ruth Ann Sikora Parent 

Tony DiVittorio Clearbrook 

Theresa Forthofer Easter Seals-DuPage, Fox Valley 

Karen Fried Advocate Health 

Todd Fuller DHS 

Candice Gizewski Behavioral Perspective 

Christine Hammond DHS-OAS 

Terry Herbstritt Parent, PACTT 


Amy Martin TAP 

Suzanne Juzwik Parent/BCBA 

Sandra Rodenburg Illinois Center for Autism 

Marla Root Insurance Coalition

Cheryl Widman Parent 

II. New Business

a. Public comment (9/1) on ABA Medicaid coverage

Once the State Plan Amendment is posted we have to comment by 9/1, right now the language is not up. Is 41 million enough to cover up to age 21? We have to see what the language says. You will get a notification because we have to turn around comments quick. We need a way to coordinate our response. We won't spend nearly that money because of lack of BCBA's. Medicaid kids don't make it to treatment by age 4-5.

b. Marla Root - Blue Cross Blue Shield (BCBS) ABA provision

Marla Root: The points below are BCBS medical Policy for autism treatment and barriers to access to treatment. We have had no response from BCBS at this time. Have been in contact with depart insurance and legislatures.

  1. Re-diagnosis every 36 months- we don't want treatment to be held up and we don't want wait lists for evaluations. Psychologist's time is driven up and the wait list becomes longer.
  2. Idea of an age guideline, we don't want a quantitative limit to treatment.
  3. Behavioral and skill deficits - much stricter than the mandate. ABA services qualifications-how do you quantify significant. The threshold we are looking for can't be treated differently from a physical medical treatment.
  4. Abilities for reasonable participation (intellectual development) violations.
  5. Parents should be involved; if your parents are not going to participate you do not qualify for ABA.
  6. 80% of trainings for parent participation, some parents have cognitive difficulties.
  7. The expectation of treatment benefit; it has to provide a benefit to the member. - People do have plateau periods where maintenance is the appropriate treatment, can't introduce new skills at this time until a behavior is worked through.
  8. Treatment in the classroom- can't be provided at the same time as the classroom. Maybe due to not letting outside entities into the school.
  9. Non-covered per contract exclusions - more than one ABA practitioner cannot provide treatment in the same day. Violations in achieving independence for instance during job training. Treatment plan goals should be based on the deficits of ASD. The targets are where we get the treatment outcome to the goal. Have to see the bigger picture. Treating the core deficits. Targets should not be provided to the insurance company. Always go back to core deficit. Indication of how you are taking data - generalization across 3 people and 3 settings. We have to think about the medical model.
  10. Comprehensive treatment hours Max 40 (30-40), way too much quantified treatment. Idea of telling families they cannot ask for more and there is a cap. Focused treatment for older kids with fewer hours. These are guidelines not caps; there is concern on the insurance of fraud, when you begin to allow that many hours. In Calif the schools do it and do not go through insurance. We need to have safeguards in place. This will be an outlier - someone at risk. I do not talk hours with families. Work to build capacity of educators who are BCBA certified.

We are concerned that we can't get an audience with BCBS. We are meeting with many advocacy organizations about this. We have a strong Mental Health parity law. We need to educate the department of insurance.

Jim Runyon commented- they are not accepting diagnosis by advanced practice nurse - getting denials, push back on re-diagnosis -we are not asked to re-diagnose a child with Cerebral palsy, Autism should be the same -we are very opposed.

Families that are requesting a second ADOS - see wavering by BCBS about payment. If this is going to be a requirement, than they need to pay for it. This places providers in a position that is not what they would choose.

What is required with this re-diagnosed, what they are really looking for is validation that whatever therapy is working and showing some sort of outcomes and what progress the child is making. No ABA therapy is going to make autism go away. They want physician to validate that ABA is showing improvements. The re-diagnosis interrupts care and makes them wait.

Theresa Forthofer: While I agree with everything, there is an important evaluation that needs to take place every so often - not re-diagnosis but some sort of check in on progress. That would be more aligned with what we need.

ADOS is a diagnosis tool not a progress tool so we have to push back on using a diagnostic tool in that manner.

Please contact Marla regarding your comments.

Regarding the Poster on Medical parity law Marla will forward the link.

c. N.B. Consent Decree

The NB consent decree lawsuit in 2011, Illinois is not providing behavioral treatment under the waiver. HFS is coming up with a plan regarding inappropriate services. Not under NB we would be providing ABA to kids. Kids that are high utilizers will be identified. State is working on 5 year plan but we are behind. The concern on children with autism is they are not included in this class. DD is not in this category.

The Arc has posted the implementation plan.

d. Update Member Information

DHS is reviewing all the boards, commissions, and advisory groups and standardizing the information on members and bios… Chris will give share what information will be needed. In anticipation you may want to update your bios.

III. Division Updates

No updates

IV. Workgroup Updates


No updates


(Above) State plan amendment to be posted and subsequent comment period

Act Early:

Ann Cutler has retired, she brought this to the task force and we would like to carry on with this. Anne will send that survey and reach out to the different groups within early intervention to find out what those waiting lists are. We are looking for a potential chair for this committee. We are going to ask Kruti if she could take this role.

V. Old Business

a. BCBA Licensure:

Candice had sent out the most updated draft language out there, they would love if the task force would support it. We are not sure if all of the changes are there, the task force asked if there is a way to get a redline on the last version. The best bet would be to hold off if we can get the exemption language for the level twos. Language coming from IARF and then we will send a new version.

b. Insurance Bill progress:

Addressed above

VI. Announcements

  • Cheryl Widman- PhD Candidate looking for research survey. Parent participation in a study. Go to Looking for parents with kids attending or past attending. 2 or 4 year college or technical college. Get a 20 dollar Starbucks gift card for the survey.
  • Jim Runyon-Autism cares act has to be reauthorized this year USHB1058 provides the bulk of funding for autism including "Lend", Durbin and Duckworth will support - deadline in September. Has passed the house and has to go through the senate. Once it is passed, that process of any changes can start immediately.
  • Marla- gathering information on appeals and denials, trying to calculate to get data so we can show the amounts of denials etc. and collect data going on in the state on what is really happening out there.

VII. Next Steps

  • Follow up on Act Early
  • Reach out to Head start