State Efforts to Improve Services for Persons with Autism Spectrum Disorder

STATE OF ILLINOIS
DEPARTMENT OF HUMAN SERVICES

2020 ANNUAL PROGRESS REPORT

State Efforts to Improve Services for Persons
with Autism Spectrum Disorder

As required by PA93-773

February 17, 2021

Dear Honorable Governor JB Pritzker and Honorable Members of the General Assembly:

Consistent with PA 93-773, I am pleased to submit to you the eleventh 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.

Sincerely,

Grace B. Hou

Secretary

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 PA 93-773

1. Early Intervention Services for Children with Autism

Board Certified Behavior Analysts

In response to a request from the Illinois Autism Task Force, the Early Intervention (EI) program included Board Certified Behavior Analysts (BCBAs) as credentialed/enrolled providers in the system. Revisions to the Early Intervention Program rule (89 ILL. Adm. Code 500) went into effect on January 23, 2008. As of January 2021, (9) BCBAs hold Full Credentials and 10 hold Temporary Credentials while they work towards obtaining a Full Early Intervention credential and 2 are in-process of enrolling.

Transition from Early Intervention to Early Childhood

Several recommendations from the Early Intervention to Early Childhood section of this report involve improving this transition process. Continuing efforts in this area are directed toward ensuring successful transition and effective family support. In addition, an Early Intervention to Early Childhood Transition Guidance Committee continues to meet quarterly. Recent work of this committee includes:

  • Revision of the joint transition training sponsored by STAR NET and the Early Intervention Training Program (EITP). It is now titled, "Transition from Early Intervention to Early Childhood Services: Roles and Responsibilities." The training was held throughout the state and in a webinar format due to the global pandemic.
  • Conference presentations of a modified Building Bridges to Special Education Directors and the Illinois Alliance of Administrators of Special Education; listing committee's module, 'Transition for Families of 3 Year Olds: Understanding Least Restrictive Environment,' on the Early Childhood Technical Center's (ECTA) website; https://ectacenter.org/
  • Updated process of 27-month list, now 25-month list (children transitioning from EI) to be more automated and accurate in delivery;
  • Finalized updates to the "When I am Three, Where Will I Be?" resource book

Autism Training

The Early Intervention Training Program has coordinated several autism-specific training activities including the following:

  • The Early Intervention Training Program (EITP) provided early intervention credit for professional development opportunities on autism and topics related to supporting young children and families with autism during FY20. Early intervention credit is awarded for professional development opportunities that meet Early Intervention continuing professional educational standards with content reflecting birth to 3 and alignment with the Illinois Early Intervention principles. Information about the workshops is included in the training calendar, which is posted on the Early Intervention Training Program website.
  • EITP sponsored the following professional development opportunities
    • "Autism Review: Co-occurring Physical, Medical, and Mental Health Conditions in Young Children with ASD"
    • "Welcome to the Group: Inclusion for Young Children with Autism"
    • "Engaged and Extraordinary: Supporting Young Children with Autism and Other Developmental Disabilities"
    • "The PLAY Project's Two-Day Autism Intensive Workshop" (3 offerings)
    • "Stepping Out: Family Outings with Young Children with Autism"
  • STAR NET and the Early Intervention Training Program continue to provide statewide training regarding the transition of children from early intervention services into early childhood special educational services. This is 5-hour training by a panel that includes trainers from STAR NET and the Early Intervention Training Program, a representative from the local school district, and a parent liaison. This training was revised this year and is now called "Transition from Early Intervention to Early Childhood Services: Roles and Responsibilities." The training was held throughout the state and in a webinar format due to the global pandemic.
  • EITP offers an online module entitled: Transition: Partnering with Families as they Leave Early Intervention"
  • Early CHOICES and EITP have offered an online module entitled "Transition: Understanding Least Restrictive Environment". In FY20, this was completely revised and is now entitled "Understanding Inclusion" and will be available in English and Spanish for families and early intervention/early childhood personnel.
  • STAR NET provided a variety of other webinars specific to autism, including communication strategies, STEM learning, mental health, receptive communication strategies, and strategies to support children with ASD after a meltdown. Additional webinars were provided regarding teaching diverse learners. Since all offerings were webinars, they were available statewide.
  • Autism Resources: The EI Training Program continues to expand the resources on its website. A specific resource page for autism, which includes access to many autism-related resources including a webcast on screening using the M-CHAT, can be found at: http://illinois.edu/blog/view/6039/114621 .
  • The Early Intervention Clearinghouse now has more than 1,200 loanable resources related to Autism Spectrum Disorders. These resources are available to borrow in a variety of formats including books, eBooks, audiobooks, CDs, DVDs, and journals. The Autism Spectrum Disorder collection includes information for parents, professionals, and educators from the initial onset of symptoms throughout the lifespan, including childhood, adolescence, and adulthood. Clearinghouse materials are available to all Illinois residents and the collection is accessible through their website (www.eiclearinghouse.org). Materials are regularly added, and new items become available on an ongoing basis.

The Act Early Committee:

The Act Early Committee reconvened in July 2020 and meets once a month. The Committee Identified 6 goals in July 2020 to work on in the coming year, with first 2 goals as primary focus for the upcoming year.

  • 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.
    • Early Intervention, before age three, is especially beneficial to improve long term outcomes.
    • 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.
  • 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.
    • 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.
    • 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
    • Identify and deploy strategies to increase primary care and Early Intervention provider knowledge about ABA scope and indications to improve service referral and delivery.
    • Investigate and implement ways to support transition from EI to Early Childhood Education programming.

2. Enhancing Family Support Mechanisms to Enable Persons with Autism to Remain in Home-based or Community Environment.

  • In FY 2019, three previous PUNS categories were consolidated into two: Seeking Services and Planning for Services. IDHS DDD has created a definition of "Reasonable Pace" that will actively move individuals on the Seeking Services category from the PUNS list over the next five years. From FY 2020 to FY 2024, PUNS selections will be conducted annually, as appropriations allow. 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). IDHS DDD will continue to handle all situations that rise to the crisis level as it currently does, whether an individual is enrolled in PUNS or not.
  • For FY 2020, the Division agreed to serve a minimum of 600 individuals selected from the PUNS list. In FY 2021 through FY 2025, the Division will serve a minimum of 630 individuals from the PUNS list each year. Following FY 2025, no individual on the PUNS list in the seeking services category should be waiting for more than 60 months. ISCs will submit funding requests for eligible individuals who are determined to be in crisis, these individuals will not wait for PUNS selection.
  • Updates on the Support Service Teams (SST's) and related information can be found on the DHS website http://www.dhs.state.il.us/page.aspx?item=50861 or http://www.dhs.state.il.us under the Division of Developmental Disabilities' link.

Partner Accomplishments- Calendar Year 2020

For the 2020 fiscal year, The Autism Program of Illinois (TAP), along with its partners, has met and all their deliverables. TAP continues to promote best practice standards; educating and sharing resources with professionals and community members; expanding trainings offered; and increasing access to ASD screenings, diagnostics, and evidence-based interventions. The last 4 months of the fiscal year presented some significant challenges with the COVID-19 pandemic, which is reflected through the numbers in their deliverables. TAP was fortunate to have a knowledgeable and experienced staff which pulled together quickly, allowing the program to pivot to a virtual platform where partners could continue providing services.

In the true sense of a network, TAP implemented bi-monthly calls to provide a space allowing the partners to share their COVID-19 issues and concerns. The response was overwhelming with participation from all 15 partners at all levels of staffing, dealing with a variety of issues such as staffing shortages, safety protocols, HIPPA compliance issues, continuing services, lack of PPE, and operational guidance. Through these efforts TAP provided an opportunity for partners to address COVID-19 problems within deliverables and share clinical experiences, ensuring best practices to aid in the assessment and treatment of ASD. TAP has proven that through adversity a strong partnership can survive a pandemic and even thrive in an otherwise tragic situation.

TAP and TAP partners produced the following deliverables:

  • Our nine Family and Community Resource Rooms were in operation providing ASD information, resources, and consultation and referral services throughout Illinois to more than 5,341 individuals. Resource rooms were open on average 32.64 hours a week across the four quarters.
  • TAP developed a portal that can be accessed through our website which provides a referral system across the state for those seeking autism services across our network of providers. The portal is set to launch in the spring of 2021.
  • Despite challenges in the last two quarters, TAP was still able to provide 405 ASD screenings and 351 ASD diagnostics throughout the fiscal year. To increase diagnostic capacity, TAP sponsored 2 two-day Autism Diagnostic Observation Schedule (ADOS) trainings for clinicians that enabled them to utilize the ADOS in future diagnostic evaluations. A total of 60 participants attended these trainings. Unfortunately, the third ADOS-2 training had to be cancelled due to pandemic restrictions.
  • A total of 874 children received evidence-based interventions which resulted in nearly 17,000 hours of intervention including individual and group services.
  • Three hundred eighty (380) TAP training programs were conducted to increase ASD awareness among educators, medical providers, and first responders. Over 6,000 professionals attended these trainings. Several trainings provided professionals with a basic understanding of autism and the core deficits of those diagnosed with the disorder. A focus on best practice interventions in the areas of supporting communication, social/peer interactions, inclusion and classroom management were also a common thread among several trainings.
  • Two Hundred forty-seven (247) TAP training programs were delivered for parents and families. More than 5,800 family members attended these trainings. Topics centered on teaching basic information about autism and what evidence-based practices are available for those with ASD.

TAP continues to work with various professional and advocacy organizations at the state and national levels: including The Arc of Illinois, Autism Speaks, the Illinois Chapter of Academy of Pediatrics and the Illinois Autism Task Force.

3. Adequate Transition Services for People with Autism from Public School Programs to Adult Services.

Transition Subcommittee

The Autism Task Force Transition subcommittee in 2020 joined efforts with the Employment and Economic Opportunity for People with Disabilities Taskforce (EEOPD) Transition Work Group to help with direction, become more informed and to be able to give input regarding the needs of people with Autism. The EEOPD Transition Work Group has several active members from DRS, DHS and ISBE. In February 2020 The ATF Transition Committee attended their first EEOPD meeting. In July the group completed an in-depth survey to prioritize activities and break down the priority area with which to focus on going forward.

Additionally, the subcommittee and EEOPD members received updates and training on new initiatives including the Memorandum of Understanding (MOU) between the DHS Division of Rehabilitation Services (DRS) and the Division of Developmental Disabilities (DD), supported employment, customized employment and statistics on special education students post high school. These statistics included percentages of students who obtain employment, attend 2-year or 4-year colleges, students who drop out, and which students with disabilities are in the lowest percentages, students with autism included. Additionally, the subcommittee has learned about the existing barriers in moving toward the goal of teachers receiving more education in transition.

Employment First

Members of the IATF Transition subcommittee collaborated with members of the Employment and Economic Opportunity for People with Disabilities (EEOPD) Transition Workgroup, to review long-range goals identified in the 2017 EEOPD Recommendations Report and prioritize future areas of focus. Workgroup meeting speakers included Ron Mulvaney, Work Incentives Planning and Assistance Director; Casey Burke, DDD Supported Employment Deputy Director; and Kristin Wagner, DRS Community Resources Manager.

Insurance Subcommittee

The Autism Task Force has been in support of Illinois Medicaid recipients with Autism Spectrum Disorder (ASD) to receive Applied Behavioral Therapy (ABA). Public Act 101-10 was passed in 2019. It stated that: the treatment of autism spectrum disorder through applied behavior analysis shall be covered under the medical assistance program for children with a diagnosis of autism spectrum disorder when ordered by a physician licensed to practice medicine in all its branches and rendered by a licensed or certified health care professional with expertise in applied behavior analysis. A State Plan Amendment (SPA) was subsequently approved by CMS in January 2020.

The approved SPA included an unexpected revision, however, that specified that Board Certified Behavior Analysts (BCBAs) must also be recognized as a Licensed Clinical Social Workers (LCSWs) or Licensed Clinical Psychologists (LCPs) working within the scope of their practice. This dual credential requirement will result in devastating barriers to access the Early Periodic Screening, Diagnostic and Treatment (EPSDT) benefit.

The Behavior Analyst Certification Board indicates that as of February 2020, only 26 of the BCBAs practicing in Illinois also practice as either a LCSW or LCP. This means that 98% of the ABA provider pool in Illinois does not meet the requirements published in the State Plan Amendment as well as the subsequent Illinois Department of Healthcare and Family Services (IHFS) Provider Notice of October 30, 2020. The required dual credential is an exception to the standard for the implementation of the ABA benefit under Medicaid State Plans nationwide.

Additionally, the Provider Notice of October 30, 2020 states that BCBAs shall not maintain a written collaborative agreement with more than with (8) Registered Behavior Technicians (RBT's) at any given time.

The Autism Task Force believes that families with Medicaid eligible children with ASD will continue to struggle in accessing ABA treatment programs if the proposed benefit as written remains in effect. The Autism Task Force proposed the following to HFS.

  • BCBAs be allowed to provide and supervise ABA services without the additional requirement that they be LCPs or LCSWs.
  • The caseload ranges as defined by the BACB guidelines (Applied Behavior Analysis Treatment of Autism Spectrum Disorder: Practice Guidelines for Healthcare Funders and Managers (2nd ed.) and subsequent clarifications at https://www.bacb.com/bacb-resources/ be utilized rather than the limitation on the number of RBTs with whom a BCBA can collaborate.

4. Feasibility of obtaining federal financial participation and obtaining a Section 1915c waiver for persons with autism.

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 young adults with developmental disabilities (including children 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, 2017.

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.

Children's Support Waiver

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.

Available service options:

  • Personal Support (includes in-home respite in definition)
  • Self-Directed Assistance (new service as of 2017; assist the family in arranging for, directing and managing services)
  • Temporary Assistance
  • Behavior Intervention and Treatment
  • Training and Counseling for Unpaid Caregivers
  • Home/Vehicle Modifications

The maximum unduplicated number of participants for the Children's Support Waiver was 1130 at the end of FY20. 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 Services DD 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.

Children's Residential Waiver

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) that require this service. Child Group Homes are licensed by the Illinois Dept. of Children & Family Services (DCFS).

Covered Services include:

  • Residential habilitation
  • Behavior Intervention and Treatment

The maximum unduplicated number of individuals served in the Children's Residential Waiver was 203- FY20.

Services are designed to be very similar to the current adult DD waiver to facilitate a seamless transition to adult waiver services for individuals between the ages of 18 and 21, should these services be needed.

Overview of 2019 Waiver Activities

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: http://www.dhs.state.il.us/page.aspx?item=31193.

Next Steps

The COVID-19 pandemic has resulted in a very challenging time period for individuals and families with ASD. Much of the usual way of doing business and offering services has required some adjustments. Long term effects due to changes in services to individuals with ASD remain to be seen. The Task force will keep this in consideration as we move forward out of this pandemic.

  • In 2021 The Autism Task Force will explore and research the feasibility of creating an Illinois Transition Bill of Rights for Parents of Students Receiving Special Education Services. This Transition Bill of Rights for parents of students receiving special education will help parents and students understand a student's rights related to getting an education and other important issues regarding the transition to life after high school.
  • The Autism Task Force Transition subcommittee goals for 2021 include:
    1. The subcommittee will continue to work in partnership with the EEOPD in the coming year.
    2. The subcommittee will work with ISBE representative and UIC to identify ways to help teachers access more training on transition.
    3. The subcommittee will be reaching out to DRS Representatives to better understand the system and make informed recommendations for people with autism in transition and post high school.
    4. The subcommittee will also follow the University of Illinois Chicago's grant to develop a program that will prepare individuals with intellectual disabilities for competitive employment. The project leader of this grant is Tamar Heller, distinguished professor and head of the UIC Institute on Disability and Human Development. The grant to the UIC Department of Disability and Human Development comes from the U.S. Department of Education to develop a "Model Comprehensive Transition and Post-Secondary Program for Students with Intellectual Disabilities."
  • The EEOPD Goals for 2021 include:
    1. Create and distribute a one-page summary of employment services available to transition students and adults via the Divisions of Rehabilitation Services and Developmental Disabilities.
    2. Create an Employment Services FAQ to address common misunderstandings and areas of interest for transition students and families.
    3. Analyze data related to employment outcomes for students transitioning to adult services.
  • The Autism Task Force in 2021 will explore the need to form an Adult Services subcommittee with the intent to focus more attention on the needs of individuals post-high school and beyond.
  • The Autism Task Force Insurance subcommittee will continue to advocate for fair access to ABA coverage for Medicaid-eligible children.
  • The Act Early Committee's next steps for 2021:
    1. Proceed with needs assessments, data collection, and solution identification for the identified 2021 goals.
    2. The Act Early Task Force is partnering with the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) for information gathering towards the main goals:
      1. LEND scholars will survey credentialed BCBAs in EI and a those that are not to determine how to engage more BCBAs in Early Intervention system. Anticipated completion: Summer 2021.
      2. LEND scholars will investigate other states' processes and protocols to identify children at risk of ASD Early Intervention (Part C) programs and identify barriers and opportunities other stated have addressed. Anticipated completion: May 2021.
    3. Partner with Illinois Chapter of the American Academy of Pediatrics and the Illinois Academy of Family Physicians to re-invigorate screening for developmental delays, especially in context of COVID-19 to help identify children at risk of developmental delay.
    4. Partner with Illinois Chapter of the American Academy of Pediatrics and the Illinois Academy of Family Physicians to re-invigorate referrals to home visiting programs and Early Intervention, especially in context of COVID-19 to help identify children at risk of developmental delay.
    5. Partner with the CDC's Learn the Signs. Act Early (LTSAE) Ambassadors for the state of Illinois to help facilitate COVID-19 pandemic specific grant projects to improve early identification efforts in 2021 the future.
      1. Support LTSAE efforts to distribute the CDC's LTSAE milestone tracking materials to families across Illinois via educational materials distribution and training programs for home visitors to help identify children at risk of developmental delays, including autism.
      2. Support the LTSAE sponsored project, Extension of Community Health Outcomes (ECHO) Autism in Primary Care, which seeks to improve primary care providers' self-efficacy in early identification of children at risk of developmental delays, including autism, and appropriate care coordination for those children to promote best health outcomes.
      3. Support the LTSAE sponsored project, ECHO Autism Early Years, seeking to improve care delivery of needed intervention services to children at risk of developmental delays, including autism, and appropriate care coordination by interventionists working with children ages 0-5.
  1.  ILLINOIS AUTISM TASK FORCE MEMBERSHIP

Ms. Kruti Acharya, University of Illinois-Chicago LEND

Ms. Patti Boheme, Wellspring Clinical Associates* 

Ms. Amanda Brott, The Hope Learning Academy

Ms. Stephanie Brown, Parent, the Autism Society Southern Illinois

Ms. Mo Buti, AiepA Advocate and Instructional Expert for People with Autism

Ms. Sherry Brueck-Ladislas, Parent, Trinity Services

Mr. Brian Dacy, Rehab Tech Supply

Dr. Robert Daniels, Chicago Children's Clinic

Mr. Anthony G. DiVittorio, Clearbrook

The Honorable Peter "Pete" DiCianni, Parent, DuPage County Commissioner of the 2nd District, former Mayor of Elmhurst- Co-Chair of the IATF*

Ms. Theresa Forthofer, Easter Seals-DuPage, Fox Valley

Dr. Karen Fried, Sonia Shankman Orthogenic School

The Honorable Sara Feigenholtz, State Representative - 12th District

Ms. Candice Gizewski, Behavioral Perspective Inc.

The Honorable Don Harmon, State Senator - 39th District

Mr. Terry Herbstritt, Parent, PACTT Foundation

Dr. Molly Losh, Northwestern University

Dr. Elizabeth McKenney, Southern Illinois University Edwardsville

Ms. Matiana Ovalle, Parent, UIC and Grupo-Salto

Ms. Zoubida Pasha, Parent, Family Resource Center on Disabilities

Ms. Megan Roberts, Northwestern University

Ms. Colleen Shinn, Autism Speaks

Ms. Ruth Ann Sikora, Parent, Comprehensive Services Committee

II. STATE AGENCY PARTNERS

Gloria A. Bean, Department of Human Services-Division of Developmental Disabilities

Ann M. Freiburg, Department of Human Services-Early Intervention Systems

Christine Hammond, Department of Human Services -Office of the Assistant Secretary -Programs

Nkechi Onwuameze, Illinois State Board of Higher Education

Allison Stark, Department of Human Services-Division of Developmental Disabilities

Sean P. Weldon, Department of Human Services-Division of Rehabilitation Services

Dr. Constance Williams, Department of Human Services - Division of Mental Health III.

*Co-chairs of the Task Force