2023 State Efforts to Improve Services for Persons with Autism Spectrum Disorder

 January 5, 2024

TO:

FROM:

SUBJECT: 2023 Illinois Autism Task Force Report

Consistent with 20 ILCS 1705/57, I am pleased to submit to you the eighteenth annual progress report on efforts to improve services for persons with autism spectrum disorder (ASD) and their families.

The Illinois Autism Task Force (IATF) and its working committees have continued to work this year on behalf of persons with ASD and their families, providing valuable input and guidance to the Illinois Department of Human Services (IDHS), the Illinois Department of Healthcare and Family Services (HFS), and the Illinois State Board of Education (ISBE).

This report details progress made in several areas:

• Addressing Early Intervention services for children with autism
• Enhancing family support mechanisms to enable persons with autism to remain in their homes and communities.
• Transition services from public school services; and
• The Section 1915c waiver for persons with autism

By supporting the work of this Task Force, supporting the Children's Waivers and the use of federal reimbursement for the growth of services, and supporting crucial legislative changes, you have demonstrated your interest in and continued support of this important work. We look forward to continuing to partner with you and the IATF in the future.

If you have any questions or comments, please contact Christine Hammond at Christine.hammond@Illinois.gov

cc:

Annual Autism Report for 2023

Overview

On July 21, 2004, Public Act 093-0773, "An Act in Relations to Persons with Disabilities", was signed into law. PA 093-0773 directed IDHS to convene a special task force, to "study and assess the service needs of persons with ASD".

This report, as required by Public Act 93-773, focuses on this year's progress relative to four specific areas:

1. Addressing Early Intervention services for children with autism.
2. Enhancing family support mechanisms to enable persons with autism to remain in their homes and communities.
3. Transition services from public school services; and
4. The Section 1915c waiver for persons with autism

PROGRESS IN ADDRESSING FOUR AREAS REQUIRED BY PA93-773

1. Early Intervention Services for Children with Autism
   • The Act Early Committee:
   • The Act Early Committee reconvened in July 2020 and has since been meeting monthly. The Committee determined key goals for focus in 2021. The Act Early Committee made continued progress on these goals in 2023:
   1. Understand challenges in providing autism specific interventions in Early Intervention and identify solutions to support suitable interventions for children at risk of ASD, including behavior therapy.
      1. Early Intervention, before age three, is especially beneficial to improve long term outcomes due to the neuroplasticity of the brain before the age of 3. Identification and intervention before the age of 3 can have transformative and exponential effects on child's developmental trajectory.
      2. The group will work to identify opportunities to deliver ASD specific interventions to children at risk of ASD during the time period from EI enrollment to the receipt of formal medical diagnosis, as medical diagnosis wait-lists are long and medical diagnosis often occurs close to the 3rd birthday.
      3. Identified opportunity: Many children are recognized as being at risk for autism diagnosis months before they receive the actual diagnosis. Target this interim period for interventions as noted above. Often, children are not receiving autism specific interventions, and important intervention opportunity is lost.
      4. The Committee is utilizing published best practices from national expert groups to create a new "checklist" and quick reference guide that service coordinators and other providers in Early Intervention (IDEA Part C) can refer to once a child is identified as being at risk of an autism diagnosis to ensure that the appropriate interventions are implemented.
      5. Very few BCBAs, who are trained in evidence-based behavior interventions for autism, are credentialed in Early Intervention (IDEA Part C).
   2. Investigate opportunities for additional ASD/universal screening when a child is referred to Early Intervention and make recommendations to Early Intervention for implementation of screening process.
      1. Identify and implement strategies to improve the referral process to Early Intervention by primary care providers, including examining communication between primary care providers and early intervention providers. The Illinois Chapter of American Association of Pediatricians has formed a task force to promote collaboration and communication between primary care physicians and Early Intervention providers. The Act Early Committee is collaborating with ICAAP to promote quality referrals to Early Intervention and Special Education services.
      2. Determine how to best support primary care and EI providers to have difficult conversations with parents and caregivers to avoid "wait and see approach" and deploy identified support strategies.
      3. Identify and deploy strategies to increase primary care and Early Intervention provider knowledge about ABA scope and indications to improve service referral and delivery.
      4. Investigate and implement ways to support transition from EI to Early Childhood Education programming.
   3. The Act Early Committee's Completed Work in 2023:
      1. Partnered with the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) scholars to draft an initial "guidance document" for use within Early Intervention when children are referred for a multi-diagnostic evaluation for autism indications to help support treatment goals that best support the child and family's needs.
      2. Partnered with the Illinois Chapter of the American Academy of Pediatrics (ICAAP) Early Childhood Committee to develop a survey to assess and identify barriers to pediatrician and Early Intervention (Part C) communication and impacts on early identification and provision of services via a survey of primary care providers in the state.
      3. Continued partnership with Start Early to train home visiting staff in understanding how to best refer families for further support when developmental delays are noticed.
      4. Continued providing CDC Learn the Signs, Act Early program materials to various home visiting programs in the state.
      5. Discussing with Women, Infants, and Children (WIC) leadership ways to support family engagement in monitoring their children's development, and facilitating referral for further evaluation when concerns arise.
   4. The Act Early Committee Action Plans for 2024:
      1. In partnership with the LEND scholars, the Act Early Committee will continue to finalize the guidance document, visual checklists, and reference items needed to implement a new intervention checklist for children identified to be at risk of an autism diagnosis.
      2. Partner with Illinois Chapter of the American Academy of Pediatrics and the Illinois Academy of Family Physicians to address barriers to early identification with re-invigorated information campaigns:
         1. Improved communication between referring pediatricians, parents, and Early Intervention using the preferred referral forms.
         2. Increase awareness and promote parent education in developmental monitoring, using the CDC Learn the Signs, Act Early Campaign materials.
      3. Continue to explore partnership with WIC to promote parental awareness of developmental monitoring and how to best advocate for child's needs.
      4. Continue to partner and explore ways to support home visiting staff in promoting awareness of developmental monitoring and how to best advocate for child's needs.
2. Enhancing Family Support Mechanisms to Enable Persons with Autism to Remain in Home-based or Community Environment.
   1. Updates on the Support Service Teams (SST's) and related information can be found on the DHS website IDHS: Support Services Teams (SSTs) (state.il.us) or http://www.dhs.state.il.us under the Division of Developmental Disabilities' link.
      1. IDHS DDD has implemented movement from the PUNS list into a DD Waiver service at a "Reasonable Pace". This means that Adults in the Seeking Services category will be selected from the PUNS list annually, as appropriations allow. Adult selections will be based on a person's cumulative length of time in the Seeking Services category after their 18th birthday (i.e., those with the most months accumulated are selected first).
      2. In Fiscal Years FY20 the DDD agreed to serve an average minimum of 600 individuals from the PUNS list for the years. In FY21 through FY25, the DDD agreed to serve a minimum of 630 individuals from the PUNS list each year. This multi-year plan has an end goal such that by FY25, the maximum wait time for the PUNS list will be 60 months or 5 years. ISCs will continue to submit funding requests for eligible individuals who are determined to be in crisis (homeless, abused or neglected), these individuals will not wait for PUNS selection.
3. Adequate Transition Services for People with Autism from Public School Programs to Adult Services.
   1. The Autism Task Force Transition Subcommittee/Workgroup
      1. Transition Planning is an important process that is a part of every student's IEP starting at age at age 141/2. The format and information that is provided to parents and students regarding transition varies greatly across the state. Parents and Professionals who attend IATF meetings have voiced concerns that the information provided to parents and students across the state is inconsistent and lacking in some areas. Therefore, parents and students are not getting all the information needed to plan and may be missing opportunities that otherwise would be available to them if they were better informed.
      2. The Autism Task Force Transition subcommittee/workgroup developed a survey tool to assess parent/family knowledge when it comes to understanding services available for the autism population during their high school transition years. By gaining understanding of this, the IATF, as well as autism-based services entities and schools can target their messaging and parent education to better guide parents and families with the goal of improving student success post high school.
      3. The survey went live September 2023. The survey has received 225 responses currently. The Transition Workgroup agreed to extend the survey from December 1, 2023, to March 31,2024 to capture additional responses.
      4. The subcommittee/workgroup plans to collaborate with other entities to evaluate the data obtained from the survey upon completion.
   2. Employment First
      1. The Co-chairs of the IATF Transition subcommittee remain active members of the Employment and Economic Opportunity for People with Disabilities (EEOPD) Transition Workgroup.
   3. Adult Services Subcommittee
      1. The Adult Services Subcommittee was formed in 2021 and began work in March 2021. The IATF formed the Adult Services Subcommittee with the intent to focus more attention on the needs of individuals post high school and beyond who continue to experience barriers to services and supports.
      2. The Adult Services Subcommittee areas of focus for 2023:
         1. Electronic Visit Verification (EVV) implementation was mandated for all HCBS providers nationwide. During multiple listening sessions held by the Division of Developmental Disabilities (IDHS-DDD) and Healthcare and Family Services (IHFS), attendees overwhelmingly expressed concern regarding the burden this placed on family caregivers. Federal CMS offered a live-in caregiver exemption (implemented by multiple states), but Illinois chose against the exemption. Alongside statewide advocacy organizations and legislators, the IATF Adult Services Subcommittee lobbied with IDHS on behalf of live-in caregivers, and the exemption was granted.
         2. The IATF Subcommittee chairs presented to the new IDHS-DDD Director, Tonya Piephoff. The Adult Services Subcommittee stressed the importance of increased, diversified community living capacity, especially for adults living with autism. Current funding and services do not advance person-centered options for those with high support or unique needs. An aim is to expand the options for people with autism on either end of the spectrum.
         3. The Adult Services Subcommittee chair represents the IATF on the Developmental Disabilities Advisory Council.
         4. Continued efforts to advocate for increased self-directed, community-based services, to meet the unique needs of adults on the autism spectrum, will continue in 2024.
   4. Insurance Subcommittee/Workgroup
      1. In 2023 the Autism Insurance Workgroup//focused on children's insurance, developing an early diagnosis plan with the goal of assessing provider capacity throughout Illinois on providing diagnosis of Autism.
      2. In 2022 the children's insurance group developed the following goals:
         1. Early as possible diagnosis- Early diagnosis leads to valuable services at an earlier age.
         2. Diagnostic services are adequately covered by insurance (private and public)
         3. Adequate numbers of providers available to provide diagnostic services.
         4. Providers receive fair reimbursement for diagnostic services under insurance including Medicaid.
      3. A plan was created to reach the goals established:
         1. Define barriers for diagnosis.
         2. Ask for data information to get a snapshot of waiting lists vs. capacity.
         3. Map of state sites providing diagnostic services
         4. Set forth a plan/recommendation to address those gaps and define who had the most impact in correcting these gaps.
         5. Report to the DHS Secretary
      4. The Committee/Workgroup compiled a list of providers throughout the state who complete diagnostics and their geographic locations.
      5. Members of the workgroup attempted to contact all the providers in the state, the current listing developed contains 164 Providers.
      6. The workgroup developed a survey tool to approach providers.
      7. The workgroup was able to collect valuable responses from Providers to The Autism Program (TAP). However, surveying the remainder of providers on the list proved to be very difficult.as most will require an over phone interview and volunteer assistance is a barrier for the workgroup.
      8. The goal of the project is to collect voluntary data on provider's waiting lists and capacity and to develop a snapshot of statewide needs vs. the capacity of providers to make diagnosis. The aim is to assess to the extent possible where the gaps are rural vs. urban, private insurance vs. Medicaid in children getting diagnosed.
      9. The Insurance workgroup plans to enlist help from DHS in assisting with this project.
      10. The IATF Insurance Sub-committee is for ABA therapy and is still deeply committed to ABA therapy being accessible to Medicaid recipients with autism. We will continue to support this and collaborate with autism advocates to pursue this goal. Autism advocates are continuing the work to promote this through legislative channels.
4. Feasibility of obtaining federal financial participation and obtaining a Section 1915c waiver for persons with autism.
   1. The Division of Developmental Disabilities continues to operate and receive federal financial participation on three 1915c Medicaid Home and Community-Based Services (HCBS) Waivers for children and/or young adults with developmental disabilities (including those with autism). The Children's Support Waiver, the Children's Residential Waiver and the DD Adult Waiver were all approved with an effective date of July 1, 2022. The most recent Waivers are available at https://hfs.illinois.gov/medicalclients/hcbs.html. In addition to the specific service options outlined below, each individual in a DD Waiver program receives case management from an Independent Service Coordination (ISC) Agency. ISC agencies serve as the front line for information and assistance to help individuals and families navigate the DD system and to ensure individual's health, safety, welfare, well-being, and satisfaction with services funded by DDD.
   2. Children's Support Waiver
      1. The Children's Support Waiver serves children and young adults (age 3 through 21) with developmental disabilities (including children with autism) who live at home with their families. Families are given a monthly allotment to purchase needed services.
      2. Available service options:
         1. Personal Support (includes in-home respite in definition)
         2. Self-Directed Assistance (assist the family in arranging for, directing, and managing services)
         3. Temporary Assistance
         4. Behavior Intervention and Treatment
         5. Training and Counseling for Unpaid Caregivers
         6. Home/Vehicle Modifications
      3. The maximum unduplicated number of participants for the Children's Support Waiver was 997 at the end of FY23. New enrollees will be selected from the PUNS database when there are appropriations in the state budget or enter service as a crisis (homeless, abuse or neglected). The Children's Support Waiver is designed to be similar to the adult Home-Based Support Program in the DD Adult waiver. This facilitates a seamless transition to adult Home-Based Supports, should these services be needed for young adults between the ages of 18 and 21. Services are specified in each individual's Personal Plan and HBS Service Agreement. Services are limited each month to not exceed the monthly allotment which is two hundred percent (200%) of the monthly federal Supplemental Security Income (SSI) rate. The Waiver cost limit is adjusted annually at the start of each calendar year based on cost-of-living changes in the federal SSI payment levels.
   3. Children's Residential Waiver
      1. The Children's Residential Waiver provides residential habilitation in a licensed child group home for children and young adults (ages 3 through 21) with developmental disabilities (including children with autism) who require this service. Child Group Homes are licensed by the Illinois Dept. of Children & Family Services (DCFS).
      2. Covered Services include:
         1. Residential habilitation
         2. Behavior Intervention and Treatment
      3. The maximum unduplicated number of individuals served in the Children's Residential Waiver was - 159 FY23.
      4. Services are designed to be similar to residential services in the DD Adult waiver to facilitate a seamless transition to adult waiver services for individuals between the ages of 18 and 21, should these services be needed.
   4. Overview of 2023 Waiver Activities
      1. Annually, IDHS reviews a variety of waiver quality assurance performance measures. Results are shared with the HFS and the federal CMS. The compliance results are posted on the Division's website at: IDHS: Developmental Disabilities Reports (state.il.us) (see Medicaid Waiver Reports).
5. Partner Accomplishments- Calendar Year 2023
   1. For 2023 The Autism Program of Illinois (TAP), along with its statewide network partners produced the following deliverables: A total of twenty-two (22) expert-led trainings were conducted by TAP throughout fiscal year 2023 with a total of 315 participants. These include:
      1. 5 ADOS- 2 trainings (four virtual; one -in person) with a total of 210 professionals being trained.
      2. Autism Symposium:
         1. The third annual virtual Autism Symposium was attended by forty-nine professionals and community members during quarter four.
         2. The Keynote presentation was conducted by Connie Kasari on an early intervention model for children with autism: JASPER core domains, evidence, and implementation.
         3. The TAP Symposium also included presentations from TAP university partners Southern Illinois University (SIU), the University of Illinois at Chicago (UIC) and University of Illinois. Presentations included recent research on a collaborative approach to assessing Augmentative and Alternate Communication (AAC) modalities for children with autism spectrum disorder, enhancing ABA assessment and treatment using basic and advanced computer assisted technology, and testing the effectiveness of an advocacy program among parents of transition-aged youth with autism.
      3. ASSIST Training:
         1. Fifteen parents and caregivers benefited from the twelve expert-led training sessions from quarter three through quarter four.
         2. TAP launched the statewide ASSIST training program during quarter three, providing seven expert-led sessions for 15 parents/guardians. ASSIST stands for Advocating for Supports to Improve Service Transitions and is a 12-week expert-led, research-supported training program for parents of transition aged youth with the goal to improve parent's ability to advocate for services. Topics included models of decision-making, benefits, such as social security and health insurance, and transitioning to post-secondary education and employment, post-secondary education opportunities, housing and technology options, services available through IDHS-DRS, and special needs trusts and ABLE accounts.
      4. TAP provided six hundred eighty-nine (689) training programs in FY 2023 serving 7,208 professionals, pre-professionals, parents, family, and community members. Topics included: crisis intervention training, natural environment training, autism in a neurodiverse world, responding to the behavioral signs of trauma, understanding autism, new diagnosis training, considerations of autism and the IEP, Assistive and Augmentative Communication (AAC), and non-adversarial advocacy.
      5. During fiscal year 2023, TAP completed eight hundred forty-eight (848) ASD-specific screenings, with seven hundred thirty-six (736) screenings resulting in referrals for comprehensive diagnostic evaluations and one hundred twelve (112) screenings resulting in referrals to services that best address the child's (and family's) unique needs.
      6. TAP completed five hundred twenty-three (523) ASD-specific diagnostic evaluations in fiscal year 2023, with three hundred thirty-nine (339) evaluations resulting in a formal diagnosis of autism spectrum disorder.
      7. TAP served 10,335 Illinoisans in total through the Family and Community Resource Rooms (FCRRs) during FY23, with seven hundred fifty-five (755) being unique (first-time) visitors.
      8. During FY23, TAP provided 4,759.15 hours of consultation to 2,121 individuals with 1,166 of them receiving unique first-time consultations.
      9. TAP received a total of 1,637 requests for autism services through the TAP referral portal during fiscal year 2023. Autism screenings and diagnostic evaluations were the number one requested service across the state for all four quarters of FY23.
      10. TAP conducted a total of 1,368 group sessions during fiscal year 2023, serving 2,250 individuals across the state, with eight hundred eighty (880) individuals being unique (first-time) group participants.
      11. TAP provided 23,556.09 hours of evidence-based ASD interventions for eight hundred sixty-nine (869) individuals in fiscal year 2023, with two hundred eighty-four (284) individuals being unique (first-time) clients. Services included ABA therapy, speech and language therapy, occupational therapy, physical therapy, counseling, assistive technology support and job skills training.
      12. The TAP network participated in a total of three hundred thirty-four (334) collaborations with state and national level agencies and organizations during FY 2023. TAP continues to collaborate with The Arc of Illinois and actively participates in the Illinois Autism Task Force, including committee participation on the Illinois Autism Insurance Sub-Committee and the ACT Early Sub-Committee. On a national level, TAP network partners collaborated with the National Human Trafficking and Disabilities Working Group, the Autism Intervention Research Network on Physical Health, and the International Association for the Scientific Study of ID/DD (IASSIDD). Of special note at the state level, TAP partners worked on the State DSP Curriculum Workgroup, collaborated with statewide short-term stabilization housing programs, and provided case consultation and collaborative learning opportunities through the ECHO Autism Tele mentoring series. TAP network partners also continue to work statewide with local school districts, regional offices of education and cooperatives, Head Start programs, Early Intervention providers as well as Starnet, the ALL our Kids Network, county health departments, and park districts. TAP network partners continuously collaborate with local medical providers and behavioral health providers to streamline referrals for autism screenings and diagnostic evaluations and to reduce wait list times to better serve families seeking these services in Illinois.

Illinois Autism Task Force Membership

• Ms. Kruti Acharya, University of Illinois-Chicago LEND
• Ms. Patti Boheme, Wellspring Clinical Associates- Co-Chair of the IATF, and Co-Chair of the Transition Sub-committee*
• Ms. Sasha Boheme, Hinsdale Township High School
• Ms. Amanda Brott, The Hope Learning Academy
• Ms. Stephanie Brown, Parent, the Autism Society Southern Illinois
• Ms. Sherry Brueck-Ladislas, Parent, Trinity Services
• Ms. Mo Buti, AiepA Advocate, and Instructional Expert for People with Autism
• Dr. Nasiah Cirincione-Ulezi, Ulezi, LLC
• Ms. Amy Cohen, University of Illinois Autism Clinic
• Mr. Brian Dacy, Rehab Tech Supply
• Dr. Tom DiMatteo, Wellspring Clinical Associates
• Mr. Anthony G. DiVittorio, Clearbrook
• Ms. Theresa Forthofer, Easter Seals-DuPage, Fox Valley
• Dr. Karen Fried, Sonia Shankman Orthogenic School
• The Honorable Sara Feigenholtz, State Senator- 6th District
• Ms. Candice Gizewski, Behavioral Perspective Inc.
• Dr. Ramiro Gumuccio, Parent
• The Honorable Don Harmon, State Senator - 39th District
• Ms. Sherry Healey, Parent- Chair of the Adult Services Sub-committee*
• Mr. Terry Herbstritt, Parent, PACTT Foundation
• Mr. Charles-Eugene Jiongco, Behavioral Perspectives
• Ms. Kiya Olson, ASPB Therapy Pathways
• Ms. Matiana Ovalle, Parent, UIC and Grupo-Salto
• Ms. Zoubida Pasha, Parent, Family Resource Center on Disabilities- Co-Chair of the Transition Sub-committee*
• Ms. Megan Roberts, Northwestern University
• Ms. Cari Roestel, Act Early Ambassador- Chair of the Act Early Sub-committee*
• Ms. Colleen Shinn, Autism Speaks
• Ms. Ruth Ann Sikora, Parent, Comprehensive Services Committee
• Ms. Debra Vines, The Answer

*Co-chairs of the Task Force and Subcommittees

State Agency Partners:

• Lisa Betz, Department of Human Services- Division of Mental Health
• Benjamin Delgado, Department of Human Services - Bureau of Early Intervention
• Christine Hammond, Department of Human Services - Office of the Assistant Secretary -Programs
• Nkechi Onwuameze, Illinois State Board of Higher Education
• Sarah Myerscough-Mueller, Department of Human Services-Division of Developmental Disabilities
• Tonya Piephoff, Department of Human Services - Director, Division of Developmental Disabilities
• Paula Powers, Illinois State Board of Education
• Kristin Wagner, Department of Human Services-Division of Rehabilitation Services
• Sean P. Weldon, Department of Human Services-Division of Rehabilitation Services