May 14, 2020, Illinois Autism Task Force Meeting

10am - 12pm

Agenda

1.  Introductions
2.  Division Updates- (DD, EI, DRS,DMH, ISBE)
   1.  Division Response to COVID-19
3.  Workgroup Updates
   1. Transition
   2. Insurance
   3. Act Early
4. New Business
   1. Discussion on challenges facing Autism Community COVID 19
   2. ATF Membership
5. Old Business
   1. EI diagnosis
6.  Announcements
7. Next Steps
8.  2020 Calendar year tentative schedule
   1. Thursday August 20, 2020 10:00 A.M. to noon
   2. Thursday November 12, 2020 10:00 A.M. to noon

*Meeting will be held via WebEx:

To join by phone 1-312-535-8110, 286-138-317

• (please mute all phones when you are not speaking)

Illinois Department of Human Services
Autism Taskforce Meeting Minutes

May 14, 2020 10am - 12pm

I. Introductions:

Autism Task Force: 

• Dr. Kruti Acharya, UIC-Act Early
• Gloria Bean, DHS-DD
• Patti Boheme, Little Friends Center for Autism
• Amanda Brott, TAP
• Stephanie Brown, Autism Society, Southern Illinois
• Dr. Cynthia Brouillard, Little Friends Center for Autism
• Mo Buti 
• Brian Dacy, Life Tech
• Dr. Rob Daniels, Chicago Children's Clinic
• Pete DiCianni, DuPage County Board
• Ann Frieburg, DHS-EI
• Karen Fried, Advocate Health
• Candice Gizewski, Behavioral Perspectives
• Christine Hammond, DHS-Autism Task Force Liaison
• Sherry Healey, DHS-Employment First
• Terry Herbstritt, PACTT
• Sherry Ladislas, Trinity Service/Parent
• Matia Ovalle, Grupo-Salto
• Zoubida Pasha, Family Resource Center on Disabilities
• Jim Runyon, Easter Seals Central Illinois
• Ruth Ann Sikora, Parent
• Allison Stark, DHS-DD Division Director
• Sean Weldon, DHS-DRS
• Dr. Constance Williams, DHS-MH

•  Partners:

• Dr. Nasiah Cirincione-Ulezi, BCBA
• Dr. Ramiro Gumicio, Parent
• Laura Mulford
• Dr. Mark Mosk, Behavioral Healthcare Advisory and Strategy
• Marla Root, Insurance Coalition
• Cari Roestel, Act Early/Lend Ambassador
• Andrea Sagel, Eater Seals-DuPage
• Dr. Cheryl Widman, UIC, Parent
• Dawn Sikora, Advocate
• Kristen Huffman-Gottsching, PACTT
• Debra Vines
• Judith Ursitti, Autism Speaks
• David Geslak, Exercise Connection
• We have invited possible nominations to our meeting today. We are also reaching out to people who have been members and not participated to assess their continued interest. We additionally are looking for boots on the ground as well as more diversity and widespread geographic locations.

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

• EI- (Ann Frieburg) Teletherapy for children during COVID. Technology is a bit of a problem for some. It is a major learning curve. We are also trying to support our providers through this. We have to trust people to do the best during this time. It is the intention that the live visits include evaluation. Approved for direct therapy and assessment but getting approval for using the technology for evaluations.
• DD- (Allison Stark) 7 state ops, and community based waiver funded programs and intermediate care facilities. With COVID many changes occurred and responses. State ops made quick moving changes with visitors. COVID related information is on the state website - many of our facilities have positive cases. The challenge is of the congregate settings and how COVID 19 gets around this, even with all the protocols. On the community side we spoke to New York and after those conversations we closed down the day services in mid-March. We have had some spread in the community homes but early closure of the community based services sites has helped. We shifted to support in the home CILAs as a 24/7 funding model. Home base shifted to in-home supports and increased funding for supports in home. We changed requirements for family members to be providers. We had an increase of 10% in rates to providers due to premiums in staffing rates and the 24/7 model. ICDD released a funding opportunity to providers partnered with ARC in-grant funding for innovation for strategies to support individuals. Weekly meetings with ARC and other agencies to keep on top of what is happening in the community.

• Discussion:
• Q: Has the state deployed MD's to the centers who can teach our staff how to use PPE and incentivize to keep them in the center. I would be interested in helping out.

A: We do have MDs on staff and we coordinate with our MH MDs. We established an infection control group and brought in an infection control MD and an Epidemiologist. All the services are being governed by infection control group; we still have the issues as this virus is very insidious. This is not to say we did not have issues in the beginning especially with PPE. We have infection control nurses on sight doing training. We have been blessed with testing capabilities. We have seen a lot of asymptomatic positives. Of the 348 tested at LDC, 200 were positive, about 2/3's are asymptomatic. We have tested the entire center.

Q: Employees should be fitted properly with the N95 mask.

A: We have a partnership with the local hospital; the staff goes to get fitted with the mask.

Q:  In Peoria is there enough testing for onsite for Providers?

A: DHS do not have their own testing capabilities we are in partnership with IDPH. The state op was able to partner so we had some priority however we don't have enough test to test everyone, even in our own sites. What we hear on the community side is they want access and we are working with IDPH. These sites are not being focused on as the priority but we are trying to change that for the CILAS and ICDD. The staff is defined as essential healthcare workers and should be able to go to any testing site and get a test. We do not have ability to bring tests to the providers.

• DRS-(Sean Weldon) DRS offices are closed right now.
• DMH-(Constance Williams) - managing the COVID 19 and providing technical assistance and support. We sent out a needs survey to resolve their challenges to maximize staff safely. Illinois warm line is for emotional report line staffed by wellness support staff. Call for calm emotional support, text line to get a response from a provider. The call and text numbers are being used at a high rate. Telehealth is available; the numbers are still low with in-patients with COVID.

Comment: There is an impact on intellectual and developmental disabilities having challenges -glad to hear on the mental health side but the DD is significantly impacted and cannot comprehend what is going on. We are having increased behavioral issues and could use some help. There is a true lack of understanding by this population. Constance said she would be happy to talk further about this and how we can be assisted.

Q: Can our DD individuals call the hotline?

A: It is available to anyone if they need it. It's all available on the DHS website.

Comment: We have seen mental health side calls; it's the whole family that is affected when it's a behavioral problem with autism.

Gloria stated she will send out the link to "green mountain self-advocates".

Any comments regarding schools - families are struggling with home schooling. E learning- on personal experience I can see the grades slipping even though they are doing the best they can, there is also the social aspect. ISBE did say no grades can be effected or go down during the pandemic. This will be catastrophic for all neurotypical students.

Comment: Next year's budget is completely traditional without any plan "b" for next year. Public school for children with Autism is going to be difficult. Luckily our children with Autism are used to being taught by their parents.

Comment: Maybe this is the time for us to expand school from 22-25, this could be the appropriate time to ask for that expansion as there is no other way to recover from this.

Comment: The research has to start right now; we need to be proactive for data collection for recoupment. I can't imagine my son missing a year of ABA especially for parents just starting out.

Comment: We need a representative from the academy of pediatrics, especially in developing the telehealth. Sometimes things don't happen without a catastrophe. We worry about the kids losing precious time - how can we get them diagnosed and treated.

Comment: Research was mentioned, there is ample to show brain development doesn't stop until the 4th decade in life - there is plenty of neurological research to support the environment to support brain development.

Comment: Not just for skills but for very challenging behavior - without support at home we need to maintain behavior. Without supports the challenging behavior is escalating. This experience shows that we need to get our children in education and keep them in education.

III. Workgroup Updates

1. Transition:

   1. Will be meeting with the transition sub-committee group from EEOPD. It is always the elephant in the room, the struggle with communication and how students are not successful when they leave. What is missing when students come out of school?
   2. Sherry (EEOPD) We had a good meeting in March and came up with the importance of getting this group together and getting the linkages to be smoother. This is a good time to get together. Having a young adult at home with only 1/2 hour Zoom sessions is just brutal. Transition EEOPD next week and we will discuss what we can salvage from the transition tool.
   3. Ruth Ann because the EEOPD and transition committee chose to go up to age 22 only, we still have to address the population where the school system has failed after age 22. If we only focus on the school age we forget about the population. I propose we leave the transition subcommittee but also look at a comprehensive service committee to address the individuals who needs are not being met with the existing committees. I think we need to go back and put this on as an agenda item. We need to talk about their lives going forward right now we ignore these individuals. That's why we had the comprehensive service committee.

2. Insurance:

3. In the midst of trying to get cleanup on the Medicaid that we got passed until now we are kind of in limbo. Rep. Conroy indicated they are going back next week but this session we may not be able to get much business into. Without session it is hard to get anything done.

Discussion:

Comment: I have a website that should be shared on licensure and how it is not going to serve our individuals.

Pete replied that Licensure should not be holding up the issue. We do not want to preclude the Medicaid issue but if they feel it is a sticking point we can work with them.

Comment: Wouldn't it behoove DHS on to hear both sides?

Candice - president elect ILLABA. We are working on language so we are not limiting access to DHS providers. Current language is with social workers. ABA are not in favor of us adding any language but we feel it is needed. This is still in draft form. We did have some agreed upon language and that language deviated. We would like to get a copy so we make sure it conforms. What is on the website is not the most current and Candice will get the most current. I cannot speak about other states that do not have licensure. The Secretary of HHS seems to be more pro-licensure.

The committee hearing did get cancelled but I did reach out to the committee members to educate on Medicaid and licensure are to separate issues. Pete wants to talk with Candice aside to try getting this done in this session.

Marla- Medicaid benefit, I have families trying to get the fee schedules - we have a benefit and a provider type but we have no fee schedule. We are not getting any services even with the limited provider access. How do we get them enrolled and get them services.

Act Early - (Carri Roestal) Lend ambassador. ACT early CDC program to identify children at younger ages. We would like to collaborate with everyone. In June we will start a meeting, focus ways to integrate milestones and developmental screening with young families, WIC, early headstart, home visiting agencies, and an app to use. Please contact Carri with email.

IV. New Business

N/A

V. Old Business

• EI diagnosis follow up from last meeting Ann is trying to get something together, a group of diagnosticians to help support. It is such a wide variety of practice. Few hundred diagnosed in EI. EI is only live video visits now. We cannot send providers to homes. You were looking at other types of providers to do diagnostics - we want to pursue this once we get back to a new normal.

VI. Announcements

N/A

VII. Next Steps

• Transition to 25
• Pediatricians engaged in the next meeting for diagnosis
• Speakers for the next meeting - Dr Tom Dimateo is a psychiatrist and we can try to get him.
• Dr Gumucio reached out to the academy of pediatrics and did not get much of a response
• Cheryl Widman we should talk about individuals that would have achieved neural maturation at age 22 and need to expand beyond age 22.
• Patti - we are looking at both age groups over 22 and under 3
• Since we are doing video we can invite out of state to consult with -Dr Peter Smith Andrea has had success with live video
• Cheryl suggested Dr Emanuel Casanova from South Caroline.
• In Michigan expansion to 25 has been in place at least 5 year. Transition services through the department of labor. They should have some data available. Reach out to Michigan to how it has benefited. Pull people in the next meeting.

VIII. 2020 Calendar year tentative schedule

• Thursday August 20, 2020 10:00 A.M. to noon
• Thursday November 12, 2020 10:00 A.M. to noon