May 9, 2019, The Autism Taskforce Meeting

Illinois Department of Human Services

Autism Taskforce Meeting

May 9, 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. Mike Wasmer - Transition Discussion
  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
    1. Thursday August 8, 2019 10:00 A.M. to 12:00

Illinois Department of Human Services

Autism Taskforce Meeting Minutes

May 9, 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 524-508-6879

I. Introductions:

Task Force: Patti Boheme Co-Chair(Little Friends), Pete DiCianni Co-Chair (Parent, DuPage County Board), Sherry Ladislas (Parent, Trinity Services) Terry Herbstritt (Parent, PACTT), Dr Brouillard (Little Friends), Colleen Shinn (Autism Speaks), Brian Dacy (Total Spectrum), James Runyon (Easter Seals, Central), Candice Gizewski (Behavioral Perspectives), Ruth Ann Sikora (Parent, DFDN), Melissa Gould (EI), N. Onwuameze (IBHE), Matia Ovalle (Parent, Grupo Salto), Zoubida Pasha (Parent, Family Resource Center), Karen Fried (Advocate Health), Connie Heinz (ISBE), Christine Hammond (DHS, OAS)

Partners: Marla Root (Parent, Insurance Coalition), Cheryl Widman (Parent, ARC Board), Mike Wasmer (Parent, Autism Speaks), Ebony Davidson (Parent), Meg Kooch (ARC IL), Sandra Rodenburg (Illinois Center for Autism), Amelia (intern)

II. New Business

Mike Wasmer from Autism Speaks, Director, State Government Affairs

Goal is to share work around the country, support Health Insurance coverage both private and Medicaid

Today will be a discussion about progress in the insurance and transition along with the policy agenda

Transition is the services and supports required in High school to achieve post -secondary goals. Challenges in addressing this from a policy perspective is incredibly broad with many agencies and laws involved. Each state approaches it differently. This is critical to address by Autism Speaks.

The outcomes at post- secondary are very poor. Drexel report is best source regarding outcomes.

Federal law requires transition planning begin no later than 16, some states at 14. (Illinois is 14 1/2) Which we believe is too late. Law requires there be discussion by age 18,

Only 58% had a transition plan in place by 16 (with autism) and don't have vocational rehab until it's too late (senior year).

36 Percent of young adults with autism never got a job or continued education after high school, 7% for all others (learning disabilities). 19% live independently once they leave high school.

We are failing in transition planning- it's assumed if the child doesn't need guardianship they don't need anything. Federal law prevents the school from sharing with parents (Family Educational Rights and Privacy Act (FERPA). The child has to give permission when the child reaches majority (about 18). There are alternatives to general guardianship. Need to know to waive FERPA so parents can help the student.

High School should be responsible for the needs to continue on a more smooth transition from High school to college. Also most college mental health services are acute care not regular support services. They discharge students after 6 weeks and our students have to seek community Health services.

Policy - Improve parent education (transition, insurance) to become better advocates. Connecticut passed a bill to create a transition bill of rights - contains information on what the student's rights are. In Kansas we are trying to improve upon it

We tried to form a bill to put together a transition task force. But it did not pass

We still put the task force together to make recommendations to the legislature (Kansas)

What are the qualifications of the transition specialist? No additional training or expertise, we need a credentialing process at the state or national level.

WIOA- changes require states allow 15% to pre-employment transition services for students on IP. Offer different services - daily living skills, job exploration, vocational training.

Patti and Cheryl are step grants in this? Programs like TPSID's (uncertain who pays for it). DVR is federally funded but different from state to state. (need to check with Randy). The Thrust is toward keeping students in college.

We are trying to determine if states are complying with this.

There is a federal mandates for transition but the colleges do not have to accommodate, funding is the problem and can't get traditional college loans for it.


 Ruth Ann's son's research found that of those with academic ability, 15% are able to get employment - 85% not able to get employment, typically goes back to their social skills. The faculty is different from high school- career tracks with specialties - they are not geared for people with learning differences. No longer K-12, we are missing the social piece in K-12. Transition specialists have never worked in the corporate world. The jobs they are finding for the individuals are way below their skill levels.

We have to find those employers who are more receptive (New York) we are working on this piece.

Entities that take no federal money

Bill of rights is a great idea

See what states have been successful at beating the numbers and what their practices are?

Dave Curan in New York speaks about connecting to employers

Colleen - At Autism Speaks, we have learning programs -transition flyer webinars once a week about 45 minutes long. We have multiple town hall events around "Transition to adulthood". Bigger companies are reaching out to us and now it is not just a charitable thing but is actually trying to do more. We have an online job portal for individuals across the spectrum,

Disability: Convention in Chicago to attract corporations to hire people with disabilities. It is a pricy conference.

 Discussion - 42% people don't get transition, we have plans all over the place and we still are not getting anywhere. How do we break this down in Illinois and make changes. We haven't gotten anywhere.

Even if we can start small to make a difference

Zoubida - Look at policy issues

Cheryl - how we certify our teachers. All need to be specialists in some area.

Offer Transition for all.

 Mike - Problems are not unique to autism but there is power in numbers and extend to other disability groups.

 Donna-We can ensure that disability services are easily accessible with one click away on the college's websites. Programs were all federal which provided a funding for a clearinghouse for these programs and transition programs. Have a policy where all universities have to have FERPA information, parent's rights clearly visible.

Policy objectives at policy level are to make changes in supports and services for people with autism. 50-60 of our kids don't have an intellectual disability.

Improve mental health supports, suicide awareness and prevention and overall mental health supports.

 Each year have an autism law summit- what is working well in other states? It is in

 Oct 11-12 Jackson Hole, Wyoming

III. Division Updates (DD, EI, DRS,DMH, ISBE)

No Updates

IV. Workgroup Updates

Transition Committee:

The Interagency Coordinating Committee (ICC) has been tasked to the Employment First task force. It was requested by a member that we go back to the old transition meeting format and suggested we talk about mentor programs. This workgroup has struggled with direction as the topic/tasking is so broad. We are working on joining forces and supporting other groups in the state with the same objectives, employment first and employment first transition subcommittee is one of these groups. It was felt there was greater influence in numbers.

Matia Ovalle would like to join the transition committee.

Insurance - Nothing at the federal level. For the Medicaid side on the state level, we confronted on two issues, the bulletin through HFS and the state bill HB 2845 sponsored by Deb Conroy.

HB 2845 Deb Conroy plus 20 sponsors on both sides, it passed committee but put on hold due to the budget. This is a federal mandate so we should not be put on hold. DuPage county asked for compliance. They are optimistic that there will be something in the budget to cover us.

 Two moms lost private insurance coverage and ended up on Medicaid and not getting services for their kids. Law firms are seeing these stories and willing to take up cases. Many families are on class actions and taking up these cases. Two pretty significant law firms challenging the lack of services payment.

Lawsuits are what prompted the CMS bulletin in 2014

Autism Speaks does not have a lobbyist in Illinois. David Axelrod's son is lobbyist in Springfield.

Theresa Eageleson HFS Director had a couple of concerns regarding provider qualifications but our phone call was cut short. We can attempt to allay some of her concerns.

 Some of us attended the World Autism day, the Governor attended and we felt he was sympathetic to our needs.

 We would rather not see a court situation but give the legislatures and Governor a fair chance over the next few months on the Medicaid coverage.

 Marla Root - Reached out to Sol Flores on the memo and meeting with mental health and other groups to advocate with other mental health providers as well.

 Is it possible on the Autism speaks website have a one click away for the insurance, Insurance options in Illinois and workaround. Mike stated an insurance link is there. Information on the state mandated and a link to the self- funded toolkit.

 Jim Runyon-HB 2845 having the budgetary hold. The Medicaid legislative workgroup has many things they have to tackle but we have talked to the workgroup on coverage and funding. We have Sol Flores coming to Peoria tomorrow. Greg Harris and Heather Steins, now is the time to reach out for the things they are addressing under Medicaid.

 Ebony in Chicago connected with someone to find place with task force- public contract administrator for center of human rights. I have a relationship with all the above people. I sit on a number of committees and boards throughout Illinois. Blue cross blue shield advisory group. Marla and Cheryl would like to connect with Ebony.

Act Early:

No meeting

V. Old Business


No status, the language tweaked was insignificant. Amendments needed to be added that we originally voted on.

Both bills are independent.

Checked the bill, it does not have any amendments added. No amendments filed. HB2710


Discussion:Transition vocational and specialists-training and attitude of the vocational rehabilitation counselors are not geared up to be working with our individuals at a higher level. Skill sets required, what is the expectation for a Voc rehab. Felt this discussion would be best held until DRS is represented at the meeting.

VI.  Announcements:

New IDHS Secretary Grace B. Hou

New Assistant Secretary of programs Kia Coleman

Next Meeting Thursday August 8, 2019 10:00 - 12:00.