State Efforts to Improve Services for Persons with Autism Spectrum Disorder

STATE OF ILLINOIS
DEPARTMENT OF HUMAN SERVICES

2012 ANNUAL PROGRESS REPORT

State Efforts to Improve Services for Persons
with Autism Spectrum Disorder

As required by PA93-773

January 1, 2013

Dear Honorable Governor Pat Quinn and Honorable Members of the General Assembly:

Consistent with PA 93-773, I am pleased to submit to you the sixth annual progress report on efforts to improve services for persons with Autism Spectrum Disorder (ASD) and their families.

The Autism Task Force (ATF) 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 Departments of Human Services (DHS), 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 ATF in the future.

Sincerely,

Michelle R.B. Saddler

Secretary

I. ILLINOIS AUTISM TASK FORCE MEMBERSHIP

  • Ms. Ellen Adcock, FASST
  • The Honorable Patti Bellock, State Representative - 47th District
  • Ms. Mary Kay Betz, Parent, Autism Society for Illinois
  • Ms. Patti Boheme, Little Friends*
  • Mr. Russell Bonanno, the Autism Project
  • Ms. Mo Buti, Chicago Public Schools
  • Ms. Sherry Brueck-Ladislas, Parent, Trinity Services
  • The Honorable Linda Chapa LaVia, State Representative - 83rd District
  • Dr. Edwin Cook, University of Illinois at Chicago-Co-Chair of the ATF*
  • The Honorable Maggie Crotty, State Senator - 19th District
  • Dr. Ann Cutler, Parent, University of Illinois at Chicago*
  • Mr. Pete DiCianni, Parent, DuPage County Commissioner
  • The Honorable Sara Feigenholtz, State Representative - 12th District
  • Ms. Tara Glavin, the Autism Project
  • Mr. Seth Harkins, National-Louis University
  • The Honorable Don Harmon, State Senator - 39th District
  • Mr. Terry Herbstritt, Parent, PACTT Foundation
  • Ms. Georgia Hillyer, Parent
  • Mr. Chris Kennedy, Kennedy Pierson & Strachan
  • Ms. Liz Klug, Autism Speaks
  • Mr. Carl LaMell, Clearbrook
  • Dr. Molly Losh, Northwestern University
  • The Honorable David Luechtefeld, State Senator - 58th District
  • Dr. Elizabeth McKenney, Southern Illinois University Edwardsville
  • Mr. Dean Myles, Parent, Law Enforcement
  • Dr. Valeria Nanclares-Nogués, Advocate Illinois Masonic Medical Center
  • Dr. Richard Ney, Midwestern University
  • Ms. Bridget O'Connor, Giant Steps
  • Dr. Kimiko Patterson, School District 144
  • Ms. Michelle Phillips, Family Resource Center on Disabilities
  • Mr. Tyrin Rencher, Consumer
  • Ms. Elaine Romas Rackos, Parent
  • Mr. Brian Rubin, Parent, Rubin Law - Co-Chair of the ATF*
  • The Honorable Skip Saviano, State Representative - 77th District
  • Ms. Ruth Ann Sikora, Parent, Comprehensive Services Committee*
  • Ms. Ruth Snyder, Parent
  • Ms. Susan Szekely, Illinois Center for Autism
  • Dr. Marie Weissbourd, Developmental Evaluation Clinic

II. STATE AGENCY PARTNERS

  • Tracy Aldridge, Department of Human Services - Division of Developmental Disabilities
  • Donna Brown, Illinois State Board of Education
  • Kevin Casey, Department of Human Services - Division of Developmental Disabilities
  • Eileen Deroze, Department of Human Services - Early Intervention
  • Christine Hammond, Department of Human Services - Office of the Assistant Secretary
  • David Hanson, Department of Human Services - Division of Rehabilitation Services
  • Reta Hoskin, Department of Human Services - Division of Developmental Disabilities
  • Nelida Smyser-DeLeon, Acting Assistant Secretary, Department of Human Services
  • Randy Staton, Department of Human Services - Division of Rehabilitation Services
  • Constance Williams, Department of Human Services - Division of Mental Health

*Chair or co-chair of a committee

III. BACKGROUND ON REPORT

In April 2004, a multi-agency Autism Task Force (ATF) was launched by the Department of Human Services as a means of addressing issues presented by the growing number of children and adults being diagnosed with Autism Spectrum Disorders (ASD).

The charge of the committee included five goals:

  1. To provide initiatives to promote the best practice standards for diagnosis and treatment within the existing systems of care;
  2. To provide educational opportunities throughout the State on diagnosis and treatment;
  3. To support existing systems of care for persons with ASD across the life span
  4. To work with universities and providers to identify untapped resources and unmet needs;
  5. To encourage and support research efforts on services to persons with ASD across the life span.

The momentum of the ATF was further advanced by legislative action. On July 21, 2004, Public Act 93-773, an ACT in relation to persons with disabilities, was signed into law. The law required DHS to convene a special task force to study and assess the needs of persons with ASD. The existing ATF fit the role.

The new law also required the Secretary of DHS to submit a full report of the Task Force findings and recommendations to the Governor and General Assembly by September 1, 2005, followed by annual reports by January 1 in subsequent years.

The Task Force and its working committees continue to work toward addressing the needs of persons with ASD, providing substantive input and guidance to the Departments of Human Services, Health and Family Services and the Illinois State Board of Education.

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

The co-chairs of the Illinois Autism Task Force are Brian Rubin, Esquire, an attorney and parent of an adult child with ASD; Dr. Edwin Cook, a long-time researcher and practitioner in the area of autism.

IV. OVERVIEW OF KEY ACCOMPLISHMENTS CALENDAR YEAR 2012

The full Illinois Autism Task Force (IATF) met four times during 2012 - on March 27, May 8, August 14, and November 27 - utilizing videoconferencing sites in Chicago and Springfield, and teleconferencing to maximize participation. Key accomplishments this year include:

  • The Training and Education subcommittee researched and compiled a resource catalogue of Autism training and education programs offered in Illinois as well as across the country. The training catalogue currently has over one hundred programs listed. The subcommittee is completing the final review on the catalogue and the guidelines for accepting new training programs for publication in the catalogue. The resource catalogue will be an available publication on the Autism Clearinghouse Website in early 2013.
  • The Autism Information Clearinghouse website is live and content is posted. The Information Clearinghouse committee continues to remain progressive and active. (DHS: Illinois Autism Clearinghouse).
  • The Act Early Subcommittee: The Act Early Subcommittee provides a means for exchange of information on Act Early work in the identification, assessment, diagnosis and intervention for individuals with ASD and related developmental disabilities to the taskforce and state agency representatives.

    The Illinois Act Early Impact Statement states individuals with Autism Spectrum Disorders and their families will experience equitable access to evidence-based and promising practice service to include: Surveillance, Screening, Diagnosis, Treatment Planning, Training and information, and Support.

    The Primary Outcomes of Illinois Act Early:

    1. Data/counts of children with ASD in Early Intervention, Illinois State Board of Education and DHS-DD PUNS systems will approach national prevalence rates.
    2. Families and workforce are competent to support individuals with ASD across a variety of environments.
    3. Funding will be available to provide community based services and supports.
  • The Autism taskforce added a new subcommittees in 2012:
    • Planning for the Future for Persons Living on the Autism Spectrum

      Planning for the Future for Persons Living on the Autism Spectrum Subcommittee

      Planning for the Future for Persons Living on the Autism Spectrum was formed with the intent to explore, and develop a plan and recommended actions regarding the current service delivery system in Illinois for Persons on Autism Spectrum. The subcommittee will report on the services that are missing in the system and what forms and types of funding are available to provide these services. The committee will prioritize the needed services based on the urgency of need for development with consideration to the current financial issues that face Illinois and recommend actions. The committee will also review how health care reform and Medicaid reform impacts services to individuals on the spectrum.

      The subcommittee is in the process of assessing where we are now by planning a full task force review of the 2005 report of the Autism Task force. The 2005 report is a preliminary plan describing a set of guidelines and principles that serve as a "Road Map" toward implementation of an effective and efficient system of services for individuals and families impacted by ASD. The report also outlines immediate steps to lay the foundation for building a system that is appropriate and responsive to the needs of Illinois' citizens. From an in-depth review of the 2005 report, the committee can assess what is missing in the system, what issues continue to be relevant, and prioritize what needs to be completed.

  • In 2008, IDHS and The Autism Program of Illinois collaborated to write and obtain rule changes to include Board Certified Behavior Analysts (BCBAs) as credentialed/enrolled providers for the Early Intervention system. As of November 2012, there are 11 credentialed BCBAs and 1 BCBA in the application process. These professionals work with children, parents, and other service providers to improve social, daily living, self-care, recreation, leisure, and other developmentally appropriate and functional behaviors.
  • The Autism Program of Illinois (TAP) has continued to expand accessibility resources available to the public without charge through its website. TAP has put into place a regular schedule for review and revision of these materials, and is completing the process of translating all resources available through TAP into Spanish.
  • TAP is expanding its involvement with airports through collaboration with Dr. Wendy Ross, a Developmental and Behavioral Pediatrician and founder of Autism Inclusion Resources (AIR). AIR is a non-profit organization headquartered in Philadelphia that has developed and offers specialized training for airline and airport staff to improve their ability to meet the needs of families who have a child with autism, along with providing families an opportunity to participate in a "real- world airport experience." Dr. Ross has asked TAP to serve as the Illinois provider of this training and service, and plans are underway to have the first group of families experience this in January 2013. Training dates are available at the following website: (http://www.autismir.com/).
  • TAP and its partner Have Dreams of Evanston have initiated a program with YMCA of Metropolitan Chicago to bring autism training to Y staff, and to make resource materials available at the over 100 YMCA's that make up the Metropolitan Chicago organization. TAP hopes to extend this to all YMCA programs in Illinois over the next 12-18 months.
  • During the 2012 Fiscal Year, TAP sponsored several special projects related to Early Identification and Intervention. TAP partners Easter Seals Peoria-Bloomington, Southern Illinois University, and Kreider Services utilized telemedicine to engage a developmental pediatrician in diagnostic evaluations. TAP partner Trinity Services provided ASD Screening Instruments to primary care physicians and pediatricians in the New Lenox area, and are continuing to offer resources and consultations to these practices. TAP partner Southern Illinois University initiated a new Developmental Screening Training Program for Physician Assistant students.
  • TAP initiated a new research support program with the Early Identification projects mentioned above. During the current fiscal year TAP will again sponsor special projects related to Early Identification and Intervention as well as projects related to Transition from Adolescence to Adulthood. In addition, TAP will sponsor several graduate student research projects to support graduate studies in ASD-related fields.
  • PA 94-442 established the Autism Research Fund to provide resources for research that will advance the understanding, techniques, and modalities effective in the detection, prevention, screening, and treatment of autism and may include clinical trials. The fund received contributions through an Income Tax check-off program for the taxable year ending December 31, 2005. Due to a limited response, the check-off program was discontinued, but netted $56,000 total contributions. As of December 2012, the amount in the fund has grown to approximately $64,217 with accrued interest. The Scientific Review committee of the Autism Task Force convened to establish objectives and internal procedures necessary to receive grant applications. In 2012 applications were received from and scored, and the Scientific Review committee has selected a project to fund. The Grantees had not been formally announced prior to the publishing of this report.
  • Effective July 1, 2007, two Children's Medicaid Home and Community-Based Services (HCBS) Waivers were approved by the federal Centers for Medicare and Medicaid Services (CMS). The waivers cover residential supports in licensed child group homes and home-based supports for children who reside with their families. The current status of the waivers is described in this report.

V. PROGRESS IN ADDRESSING FOUR AREAS REQUIRED BY PA93-773

A. 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 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 November 2012, 11 BCBAs hold an Early Intervention credential and one more is currently in the application process.

Transition from Early Intervention to Early Childhood

A number of recommendations from the Early Intervention to Early Childhood section of the Autism Report involved improving this transition process. Efforts continue in this area and are directed toward ensuring successful transitions and effective family supports. Many of the recommendations of the Autism Task Force have been addressed, and DHS is engaging in ongoing implementation. In addition, an Early Intervention to Early Childhood Transition Committee continues to meet quarterly. Recent work of this Committee includes piloting the new joint transition training in a couple of sites and working to make final updates to the training once the new CFC Procedure Manual is finalized. The Q & A document on transition has also been updated and is awaiting final approval by ISBE legal review.

Documentation of Autism Diagnosis

In an effort to better document the number of children enrolled in the Early Intervention Program, Child and Family Connections offices were asked to review the files of children currently enrolled in the Early Intervention Program and, when appropriate, enter an autism diagnosis code into the Cornerstone system. On an ongoing basis, service coordinators have been asked to enter this diagnosis code as soon as it becomes available. Through these efforts, the number of children enrolled in Early Intervention in November 2012 with a documented primary or secondary diagnosis of autism increased to 565.

Autism Training

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

  • The Early Intervention Training Program provided early intervention credit for 243 trainings on autism during the last fiscal year - July 1, 2011 to June 30, 2012; this is the most recent data available. Early intervention credit is awarded for training sessions that meet Early Intervention continuing professional education standards. Information about the workshops is submitted by training entities for credit approval and inclusion in the Early Intervention Training Calendar, which is posted on the Early Intervention Training Program website.
  • STARNet and the Early Intervention Training Program continue to provide statewide training regarding the transition of children from early intervention services into early childhood special education services. This is five-hour training by a panel that includes trainers from STARNet and the Early Intervention Training Program, someone from the local school district, and a parent liaison. From July 1, 2011 - June 30, 2012, nine sessions of "Transitioning Children from Early Intervention to Early Childhood Special Education" were held across the state with 424 people attending. The STARNet and the Early Intervention Training Program transition training has continued after June 30, 2012.
  • Autism Resources: The EI Training Program continues to expand the resources on its website. There is now a specific resource page for autism that includes access to a webcast on screening using the M-CHAT. These resources can be found at: http://www.illinoiseitraining.org/page.aspx?item=91
  • The Early Intervention Clearinghouse continues to expand and update its collection of books, DVDs, and other resources on Autism Spectrum Disorders. The Clearinghouse also contains an updated listing of videos available for early intervention credit with a focus on using information that is evidence-based. Clearinghouse materials are available to the public (www.eiclearinghouse.org).

Autism Summit team: The Early Intervention Ombudsman continued to participate in the conference calls sponsored by the group that attended the regional autism summit, providing updates and information when requested. The goal of the summit was to identify and develop strategies for better referral, identification, and treatment of young children with Autism Spectrum Disorders. This goal continues to be the focus of the team during the calls.

B. Enhancing family support mechanisms to enable persons with autism to remain in home-based or community environment.

Support Service Teams:

In August of 2010 the Division of Developmental Disabilities established Support Services Teams (SST's) to provide enhanced technical assistance and training for persons with a developmental disability who live in a home-based or community environment.

SST's are a state-wide initiative that provides rapid on-site response of professional staff to observe, assess, evaluate, consult with family members and providers working to support the person and provide training and other technical assistance, as necessary. The SST's are composed of nurses, Qualified Support Professionals (QSPs), psychologists, and Board Certified Behavior Analysts (BCBAs) and have the ability to access other needed specialty providers, such as psychiatrists. The goals are to stabilize the person and build community service capacity.

Updates on the SST's and related information can be found on the DHS website (http://www.dhs.state.il.us) under the Division of Developmental Disabilities' link.

C. Adequate transition services for people with autism from public school programs to adult services.

Transition Services

DHS is working with the Illinois Interagency Coordinating Council (IICC) to help ensure that appropriate transition services are provided to all individuals, including those affected by autism.

The IICC is charged with:

  1. Gathering and coordinating data on services for transition-age youth with disabilities in transition from school to employment, post-secondary education and training, and community living.
  2. Providing information, consultation, and technical assistance to state and local agencies and local school districts involved in the delivery of services to youth with disabilities in transition from secondary school programs to employment and other post-secondary programs.
  3. Assisting state and local agencies and school districts, through local transition planning committees, in establishing interagency transition agreements to assure the necessary services for efficient and appropriate transition from school to employment, post-secondary education and training, and community living.
  4. Conducting an annual statewide evaluation of student transition outcomes and needs from information collected from local transition planning committees, school districts and other sources.
  5. Providing periodic in-service training to consumers in developing and improving awareness of transition services.

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

On July 1, 2007, two Children's Medicaid Home and Community-Based Services (HCBS) Waivers for children and young adults with developmental disabilities (including children with autism) were approved by the federal Centers for Medicare and Medicaid Services (CMS).

The waivers cover residential supports in licensed child group homes and home-based supports for children who reside with their families. Effective July 1, 2010, the waivers were renewed for five additional years. Key elements of the waivers are outlined below.

Children's Support Waiver

The Children's Support Waiver covers children and young adults (age's three through twenty-one) with developmental disabilities (including children with autism) who live at home with their families.

Covered Services include:

  • Service Facilitation/case management
  • Personal Support (includes in-home respite in definition)
  • Temporary Assistance (added effective January 1, 2011)
  • Behavior Intervention and Treatment
  • Training and Counseling for Unpaid Caregivers
  • Home/Vehicle Modifications, Adaptive Equipment and Assistive Technology
  • Individual Service and Support Advocacy (ISSA) for each participant

The approved waiver capacity has more than doubled and is now 1,400 participants, increased from 600 since the waiver was initiated in July 2007. One-hundred percent (100%) of the federal matching funds generated by this program are deposited in a special dedicated fund that is appropriated to the Department to provide funding to serve additional families. New enrollees are selected from the Prioritization of Urgency of Need for Services (PUNS) database.

The Waiver is designed to be similar to Home-Based Support Services in the adult DD waiver to facilitate a seamless transition to adult services between the ages of 18 and 21. Services are limited each month by the individual service plan up to the maximum allocation of $1,396 per month in 2012.

During 2011 the Children's Support Waiver (CSW) was expanded from 1,300 to 1,400 participants to serve additional children and their families using federal matching funds deposited in the dedicated fund. Of the almost 1,400 children receiving services in 2012, approximately half are children with a reported diagnosis of autism or an autism spectrum disorder.

Children's Residential Waiver

The Children's Residential Waiver provides residential habilitation in a licensed child group home for children and young adults (age's three through twenty-one) with developmental disabilities (including children with autism) who require this service.

Covered Services include:

  • Child Group Homes (licensed by the Illinois Dept. of Children & Family Services (DCFS))
  • Adaptive Equipment and Assistive Technology
  • Behavior Intervention and Treatment
  • Individual Service and Support Advocacy (ISSA) for each participant

In 2012, the approved waiver capacity was expanded from 258 to 280 participants.

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

Of the approximately 280 children receiving residential supports in licensed child group homes during 2012, about half are children with a reported diagnosis of autism or an autism spectrum disorder.

Overview of 2012 Waiver Activities

As part of the FY11 waiver renewal process, new quality assurance performance measures were adopted and implemented. Results are shared with the Department of Healthcare and Family Services (HFS) and the federal CMS. FY12 was the second year that data was collected and summarized on the quality assurance performance measures.

VI. ADDITIONAL WORK TO BE DONE / NEXT STEPS

The Task Force continues to make progress on the ATF priorities, yet, much work remains in order to address the spirit and intent of all of the ATF recommendations and to better meet the needs of persons affected by ASD.

In 2012, the Autism web presence provided expanded access and information to families. These efforts will continue to 2013. The Clearinghouse will expand the site with the addition of the comprehensive Illinois Training and Education catalogue.

In 2013 IDHS will award the $64,217Autism Research Fund Tax Check-Off Fund to maximize the impact on autism research and awareness in Illinois.

The Training and Education subcommittee will continue to be active in 2013 in reviewing, updating, and adding additional courses to the training and education resource document.

The Planning for Future Services for Persons on the Autism Spectrum subcommittee will guide the Autism Task Force in reviewing the 2005 roadmap. The subcommittee will assist the task force in recommending actions for a continuing plan for Future Services.

Early Intervention continues to focus on identification of children with Autism Diagnosis.

With input from many community stakeholders, the Division of Developmental Disabilities adopted a new seven- year strategic plan in FY 2011. The long range plan includes a strong focus on person-center planning and person-centered services. This focus reflects the work of the ATF and its priorities.