The Information Clearinghouse Committee

In the September 2005 report of the Autism Task Force to the Governor and General Assembly, the Information Clearinghouse Committee identified challenges faced across the State of Illinois and made recommendations.

"B. Findings: Challenges

  1. There is insufficient coordination or sharing of information among the wide range of agencies (state, nonprofit, for-profit) that provide information and services across the State. As a result, there are duplications of effort and lack of a "big picture" plan for getting information out efficiently and effectively.
  2. At the local level in particular, people seeking information about Autism of available services too often do not know where to turn. This is, in part, due to historic tendencies among agencies to centralization or broad regionalization. Even when services exist locally, it is frequently very difficult to identify them and gain access.
  3. Most information on ASD is in the text format, whether on paper or web-based. There is an extreme shortage of appropriate multi-sensory and alternative formats, such as radio, streaming video, and multimedia presentations like those found on www.childnet.tv and some other sources.
  4. Many, if not most, web sites and other information tools are not designed to be accessible for people with disabilities. Given the rate of co-morbidities and particular the reading and communication difficulties experienced by people with Autism, this represents a serious barrier to accessing information and services."

(Excerpt quoted from the REPORT OF THE AUTISM TASK FORCE: FINDINGS AND RECOMMENDATIONS, September 2005, p.23.)

Two cornerstone recommendations followed from the findings. First the Committee advised that "an Illinois Autism Information Clearinghouse should be established that provides 'big picture' planning and broad inclusive collaboration on Autism information dissemination for stakeholders, providers, and consumers of services for individuals with ASD. [Second,] The Illinois Autism Information Clearinghouse should be charged with coordinating information identification and dissemination, product development to fill gaps and training for key stakeholders (parents, librarians, service providers, medical and mental health professionals) in collaboration with all Autism-related entities statewide." (2005 Report, op cit, p.23)

The Illinois Autism Clearinghouse Web Site

The third recommendation was that there should be an "Illinois Autism Information Clearinghouse web site…as a prime, cost-effective vehicle for information dissemination. The web site should be written in plain language and designed for usability and accessibility. It would link to key Autism information on other web sites." (2005 Report, op cit, p.23) The web site you are visiting, launched in 2007, is the first fruit of this vision. The Information Clearinghouse Committee pledges to continue developing this key resource. We will keep the challenges to ASD information dissemination foremost as we work and ask your help as we do so. We envision the Illinois Autism Clearinghouse becoming a true, primary source of information on ASD for the citizens of Illinois.

This web site is a major part of our work, but not the only one. We will also follow through on other recommendations, such as a coordinated ASD awareness and information campaign. We encourage and welcome your ideas on needed information.

The Illinois Autism Task Force

Impact of ASD

Autism Spectrum Disorder (ASD) is widely recognized as an urgent national healthcare crisis. According to the Center for Disease Control, the prevalence is one in every 150 children born today. This represents a drastic change from past prevalence rates. According to the Center for Disease Control, classic Autism consistent with the Diagnostic Statistical Manual IV diagnosis occurs at a rate of one in 1000 individuals. When individuals within the Autism Spectrum are considered, including pervasive developmental disorders (PDD), one in 500 is diagnosed. When Asperger's Disorder is considered, one in 150 individuals is diagnosed. In Illinois, as recently as the 1996-97 school year, only 1,980 students age 3-21 were served by the public school system under the special education category of Autism. During the 2002-03 school year, 6,125 children were receiving special education services under the Autism category. However, by 2004, 8,076 students were listed, a 32% increase in only one year. The dramatic increases experienced in Illinois are consistent with increased prevalence nationally.

Illinois Initiatives Prior to 2005

Even before 2005, Illinois had undertaken several initiatives to address the impact of ASD. The Illinois General Assembly commissioned The Autism Program (TAP) which addresses the needs of ASD-challenged children in the areas of screening, identification, diagnosis, programs and services, workforce development, and research. Equally important has been the Illinois State Board of Education's (ISBE) sponsorship of the Illinois Autism Technical Assistance and Training program, which provides professional development and training to local school districts and special education cooperatives. ISBE also sponsored Giant Steps, a school with a professional best practices curriculum for ASD challenged children. Additionally, DHS sponsored the Early Intervention Program (EI), which provides services to children birth to three years of age.

Development of the Autism Task Force

Given the impact of ASD on families across the state, the Illinois Department of Human Services (DHS) led the development of a multi-agency Autism Task Force on April 27, 2004. DHS recruited parents of children and adults challenged by ASD, representatives of State agencies, healthcare professionals, service providers, academic professionals, and members of the legislature to serve on this task force. Bennett Leventhal, M.D., a leading medical expert in ASD, and Brian Rubin, a parent of a child with ASD, were selected to co-chair the Task Force.

DHS Secretary Carol Adams designated Assistant Secretary Grace Hou to facilitate the group, which met for the first time on April 27, 2004. The charge to the Committee included five goals:

  1. to provide initiatives to promote best practice standards for diagnosis and treatment within 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.

After its inception, the Autism Task Force met regularly to discuss its visions and recommendations for how the State of Illinois might better serve families and individuals across the life span impacted by ASD. The Autism Task Force established the following committees to assess and study: a Transitions Committee with subcommittees for Early Intervention to Early Childhood, High School to Adult Life, and Seniors with ASD; Medicaid Waiver; Information Clearinghouse; Research/Training/Workforce Development; and Insurance.

The Illinois Autism Task Force Established by Law

The momentum and energy of the Autism Task Force dovetailed into complementary action by the Illinois legislature. On July 21, 2004 Governor Rod Blagojevich signed Public Act 093-0773, An Act in Relations to Persons with Disabilities, into law. PA 093-0773 directed DHS to convene a special task force, such as that described above, to study and assess the service needs of persons with ASD. The original Task Force morphed into the current Illinois Autism Task Force, which meets regularly and reports annually to the Governor and General Assembly.