Baylor Review2010

An Evaluation of The Autism Program of Illinois (TAP) Issued March 2010 Eric L. Robinson, Ph.D. Interim Chair of the Department of Educational Psychology Graduate Director of the School Psychology Program Baylor University One Bear Place #7301 Waco, Texas 76798-7301 Eric_Robinson@baylor.edu

Abstract In 2002 the State Legislature of Illinois had the foresight to become proactive in respond- ing to issues of Autism Spectrum Disorders (ASDs) by creating and passing the Public Act 93- 0395. This amendment to the Mental Health and Developmental Disabilities Administrative Act established an autism diagnosis and education program for children through the creation of The Autism Program of Illinois. The Autism Program of Illinois (TAP), which formally began in 2003, is a systems initiative and provides the strategy and framework for the State of Illinois to address the complex issues involved in diagnosis, treatment and research for the thousands of children in Illinois with ASDs. When comparing the initial year of The Autism Program of Illinois (FY 2003) to the pres- ent (FY 2009), there has been outstanding growth. In relation to direct services, the percentage growth of critical measures (e.g., participants trained, parents/family members trained, educators/ family consults conducted, children receiving direct services, etc) all exceeded a 2,000% increase. Viewed another way, the total number of contacts in FY2009 in the state of Illinois for children with ASD as well as their families, their school employees, their medical experts, and agency personnel exceeded 73,000 (162,065-88,861 {Learning Aids Provided} = 73,204). When one adds the 88,000+ learning aids provided at no cost, the direct contact provided by TAP is staggering. In addition to exceptional progress in the provision of direct services, TAP has also ad- dressed its system-wide infrastructure over the past seven years. In 2003, the infrastructure for TAP consisted of three university-affiliated training centers (U. of Chicago, SIU-Medical School – Springfield, and SIU-Carbondale). By 2009,TAP had grown to include two additional university- affiliated training centers (U of Illinois and Illinois State U), as well as two outreach centers, seven regional centers, and seven collaborative partnerships. The addition of 11 additional centers and seven partnerships is an important measure of state-wide impact of TAP. The synergic relationship between the development of the infrastructure and increase in direct services should be apparent. The remarkable growth since 2003 has resulted in TAP becoming recognized as a national leader in Autism-related services. TAP has been represented at numerous national conferences as well as conference partnerships including National Center for Disease Control and the American Academy of Pediatrics. A further acknowledgment of TAP is that it is being recognized as a resource for consultation and collaboration across the United States. A sample of consultation/collaborations include the University of North Carolina, Baylor University, Autism Speaks, the New York Center for Autism, and the Organization for Autism Research. A final outstanding measure of national recognition is TAP’s role in two national events; hosting the National Town Hall Meeting for Advancing Futures for Adults with Autism (AFAA), and hosting the premier of the HBO Movie, “Temple Grandin.” These events acknowledge TAP as an important element and increases its role as a powerful supporter to Autism awareness and advocacy at the national level. 1

Introduction In 2002 the State Legislature of Illinois had the foresight to become proactive in respond- ing to issues of Autism Spectrum Disorders (ASDs) by creating and passing the Public Act 93- 0395. This amendment to the Mental Health and Developmental Disabilities Administrative Act established an autism diagnosis and education program for children through the creation of The Autism Program of Illinois. The Autism Program of Illinois (TAP), which formally began in 2003, is a systems initiative and provides the strategy and framework for the State of Illinois to address the complex issues involved in diagnosis, treatment and research for the thousands of children in Illinois with ASDs. The growth of TAP since 2003 can be best viewed in three critical sections; 1) direct service activities, 2) funded infrastructure, and 3) national network and recognition. Direct service activities include face-to-face contact with individuals ranging from children with ASD, to parents of children with ASD, and to service providers (e.g., physicians, teachers, speech-language pathol- ogists, agency employees). Funded infrastructure emphasizes systems and network growth and includes expansion of educational and agency service centers. The funded infrastructure is critical to the development of TAP in that it reveals capacity for the evolution of the system.The third section compliments the previous two sections by illustrating how high quality direct services and systems growth translate into national networking. Below are highlights of growth of Direct Service Activities and Funded Infrastructure, and how they translated into National Network and Recognition of the Autism Program of Illinois. The results are a comparison between TAP’s first year (Fiscal Year 2003) with the most current year (Fiscal Year 2009). Procedures Data used in this report were collected from annual and quarterly reports internal to the organization. When clarification was needed regarding data, a telephone consultation occurred between Dr. Robinson (Consultant) and Ms. Georgia Winson (Director of TAP). It is understand- able that the internal data collection procedures would evolve along with TAP. The consultant attempted to create logical categories to best capture the direct service activities, allowing comparison across multiple years. 2

Table One Sample Direct Service Activities FY2003 - FY2009 Percent Activity 2003 2009 Change Number of Illinois Counties Impacted by TAP Service 10 101 NA Network (Estimate) Parent and/or Family Member Trained 22 933 4,141 Trainings Provided 12 400 3,233 Total Participants Trained 394 12,021 2,951 Children receiving direct services 24 762 3,075 Number of Parents and Providers Receiving Training 804 17,568 2,085 Clients Diagnostically Screened 21 868 4,033 Educator/Family Consultations Conducted 45 2,448 5,340 Child Care Providers/Staff Trained 0 897 NA Trainings Provided to Child Care Providers/Staff 0 60 NA Comprehensive Diagnostic Evaluations Conducted 0 242 NA Visits to TAP Network Partner Family Community 0 6,162 NA Resource Rooms (FCRR) throughout the Network Contacts between TAP Network Partners and 0 30,843 NA Community (excluding parents) Number of Learning Aids providing at No Cost 0 88,861 NA TOTAL DIRECT SERVICES PROVDED** (not 1322 162,065 12,159 counting number of counties impacted) Interpretation It is evident that TAP has made a stunning impact with respect to direct service activities since its inception in 2003. In addition to having an impact in 101 of the 102 counties in 2009, the percent increase in services to children with ASD, their families, and other professional personnel is staggering across all activities. Highlighting the growth include the 17,568 parents and providers receiving training in ASD-related programs. One of the goals of TAP is to provide high quality educational programs for individuals that are direct-service providers for children with ASD. 3

Training over 17,000 providers and parents in Illinois in 2009 speaks to how TAP is seen as a valuable resource for the state of Illinois with respect to ASD. A second highlight is the 88,861 learning aids provided to families and providers in Illinois at no cost during 2009. The learning resources range from a directory of “ASD-friendly dentists” across the state, to developmentally appropriate language booklets and guides for parents. Many parents of children with ASD are of- ten at a loss about how to access child-related services other parents take for granted (example: finding a dentist). It is evident that TAP, with over 88,000 learning aids provided to individuals in Illinois, is making a tremendous impact. Table Two Funded Infrastructure 2003-2009 Infrastructure 2003 2009 Examples of Growth University-Affiliated Training 3 5 University of Illinois- Centers Champaign-Urbana; Illinois State University (University of Chicago; SIU-Medical; SIU-Carbondale) Outreach Centers 0 2 Illinois Center for Autism; Easter Seals-LaSalle Regional Centers 0 7 Charleston Transitional Facility; Easter Seals- Metro Chicago; Easter Seals-Peoria; Kreider Services, Inc; Trinity Services; Easter Seals- Rockford Collaborative Partnerships 0 7 American Academy of Pediatrics-Illinois Chapter; Arc of Illinois; Developmental Disability Services Metro East; Foundation of Autism Today and Tomorrow; Have Dreams; Illinois Early Childhood Intervention Clearinghouse; Little Friends Center for Autism 4

Interpretation In order to increase systems-development in the state of Illinois, TAP has expanded its funded infrastructure over the past seven years. The physical infrastructure of TAP in 2003 consisted of three university-affiliated training centers (University of Chicago; SIU-Medical School; SIU-Carbondale). As seen above, there was outstanding expansion, ranging from the addition of university-affiliated centers at the University of Illinois-Champaign-Urbana and Illinois State, to Outreach and Regional Centers in Peoria, Rockford, Charleston, LaSalle, and Chicago-Metro. Ex- pansion of two additional universities (U of I and ISU) should send the message to parents and providers across the state that TAP is driven by best practices with respect to research-based services for children with an ASD. Currently, five well-respected research universities located at different regions in the state combine research and services to their communities revealing astute foresight and planning. This allows the state to not only provide research-based services to children with ASD, their families, and other professional providers, but also creates the culture for producing a generation (i.e., current college students) of well-educated service providers in the state. In other words, by having university-affiliated programs, the state of Illinois will reap the benefits of having a well- educated population of service providers as undergraduate students with an interest in working with children with ASD. These students will have access to cutting-edge research and services, and this generation of graduates (and future employers) will be able to provide high quality services to children with an ASD. TAP also currently funds collaborative partnerships with the Arc of Illinois, the Illinois Chapter of the American Academy of Pediatrics, the Illinois Early Childhood Intervention Clear- inghouse, and Little Friends Center for Autism. There are several advantages to this type of partnership, including the message sent to consumers (i.e., parents of children with ASD and professional providers) that TAP is attempting to provide a continuum of services through col- laborating with existing programs in the state. The creation of partnerships communicates the comprehensive nature of TAP with respect to providing a network of ASD-related services. 5

Sample* National Network and Recognition 2003-2009 Organization Relationship  Share the Vision Conference Presentations or  Autism Speaks Walk Exhibits related to  Autism Conference Kennedy King College TAP  National Autism Training and Technical Assistance Project  Association for Education of Young Children  International Applied Behavior Analysis Conference (IABA)  Barnes and Noble/Autism Speaks Outreach Program  National Association of School Psychologists Annual Conference (NASP)  Autism Society America  OCALI-Ohio Center for Autism and Low Incidence  Indiana Resource Center  National Center for Disease Control Conference  American Academy of Pediatrics Partnership  Maternal Child Health Bureau  University of Wisconsin - Waisman Center  Association of University Centers for Developmental Disabilities  Baylor Autism Resource Center - Baylor University Professional  University of North Carolina Division TEACCH Consultation  The May Institute  University Centers for Developmental  Disabilities worked with TAP to replicate the conference model in New Mexico and Kansas  Autism Speaks Professional  New York Center for Autism Collaboration  Organization for Autism Research  Easter Seals National  Global Communities of Support  America Speaks  Hosted National Town Hall Meeting —Advancing Futures for Adults with Professional Autism (AFAA). Leadership Cities involved: Chicago, Atlanta, Boston, Chapel Hill, Cleveland, Dallas/Ft. Worth, Kansas City, Long Beach, Long Island, Miami, Newark, Philadelphia, Phoenix, Pittsburgh, Sacramento, and Washington, D.C.  Hosted Experts Conference  Hosted Premier of HBO Movie, “Temple Grandin” and Roundtable discussion in Chicago, IL  Health Resources and Services Administration (HRSA)-State Grant-Related Implementation grant, funded by Combating Autism Act, submitted and Collaboration awarded to The Hope Institute for Children and Families.  National Institute of Health (NIH)-Autism Center of Excellence, funded by Combating Autism Act, established in collaboration with university partner-University of Illinois-Institute for Juvenile Research.  The Coleman Foundation, Intersect for Ability-a network of agencies representing a replication of TAP Network structure with 10 DD-ASD leaders, convened and managed by The Hope Institute for Children and Families. *The Autism Program (TAP) has interacted (i.e., collaborated, hosted, consulted, coordinated, presented) with over 100 organizations outside the state of Illinois. Above is a limited sample. 6

Interpretation A significant artifact of The Autism Program of Illinois’s success over the past seven years has been how it is becoming recognized at the national level. As seen in Table Three above, there are numerous examples of how TAP is making a positive impact nationally through a variety of methods. One approach used by TAP is through conference presentations and exhibits. TAP has been represented at a mixture of professional conferences (IABA; NASP) as well as leading programs (Autism Society of America) in the United States. The Autism Program of Illinois has also partnered with nationally recognized organizations such as American Academy of Pediatrics and the Maternal Child Health Bureau. TAP has made an outstanding impact through collaboration and consultation with other universities and organizations. Ranging from an alliance with Autism Speaks and the Organization for Autism Research, to providing consultation to the University of North Carolina and Baylor University, TAP is becoming increasingly viewed as an organization that will reach beyond the state of Illinois and impact the United States. A positive component of recognition through conference presentations, collaboration, and consultation is that TAP appears to be morphing into a national leader with respect to ASD. This can be seen through TAP hosting two important events in 2009-2010; 1) National Town Hall Meeting of Advancing Futures for Adults with Autism (AFAA); and 2) the Premier of HBO Movie, “Temple Grandin” and Roundtable discussion. This National Town Hall Meeting for Advancing Futures for Adults with Autism (AFAA) was a spectacular event that involved simulcast in 16 cities across all regions of the United States including Atlanta, Boston, Dallas/Ft. Worth, Long Island, Miami, Philadelphia, Phoenix, Sacramento, and Washington, D.C. The meeting, designed and produced by the renowned AmericaSpeaks organization, created crucial discussions on the next steps in the lives of adults with Autism and engaged close to 1000 participants across all sites. As the number of children diagnosed with an ASD continues to increase significantly, it is imperative that plans are made for these children as they transition into adulthood. By hosting this meeting, TAP was put in the national forefront of progressive programming for adult ASD services. The other significant event that demonstrates TAP’s status as a national leader in ASD was being selected to host the premier of the HBO Movie, “Temple Grandin.” Being chosen to host this critically acclaimed movie on the life of Temple Grandin, a very successful woman with ASD. The Autism Program of Illinois is being recognized by the national media in ways that are difficult to quantify. Further, having a roundtable discussion after the premier that included Temple Gran- din, a 15-year-old boy with Asperger’s from the Champaign, IL, area and Chicago CBS 2 Anchor Jim Williams, identifies events such as this as central interaction and to increasing, and TAP’s role as a forceful contributor to Autism awareness and advocacy at the national level. 7

TAP TRAINING CENTERS TAP OUTREACH CENTERS University of Illinois-Chicago Easter Seals LaSalle and Bureau Country Chicago, Illinois (312) 413-1647 Ottawa, Illinois (815) 431-9126 The Hope Institute Illinois Center for Autism Springfield, Illinois (217) 525-8332 Fairview Heights, Illinois (618) 632-9077 Southern Illinois University Carbondale, Illinois (618) 536-2122 TAP COLLABORATIVE PARTNERS American Academy of Pediatrics- Illinois State University Illinois Chapter Normal, Illinois (217) 244-1395 Chicago, Illinois (312) 733-1026 ext. 203 ARC of Illinois TAP SERVICE CENTERS Homewood, Illinois (708) 206-1930 Charleston Transitional Facility Charleston, Illinois (217) 348-3869 Developmental Disability Services Metro East Easter Seals Children’s Development Center Belleville, Illinois (618) 236-7957 Rockford Rockford, Illinois (815) 965-6745 Foundation for Autism Services Today & To- morrow (FASTT) Easter Seals Metro Chicago O’Fallon, Illinois (618) 530-0666 Chicago, Illinois Maryville, Illinois (618) 960-4663 (312) 491-4110/(312) 564-4060 Have Dreams Easter Seals Peoria-Bloomington Park Ridge, Illinois (847) 685-0250 Peoria, Illinois (309) 686-1177 Bloomington, Illinois (309) 663-8275 Illinois Early Childhood Intervention Clearing- house UCP Easter Seals Heartland Springfield, Illinois (217) 522-4655 Maryville, Illinois (618) 288-2218 Little Friends Center for Autism Kreider Services, Inc. Naperville, Illinois (630) 355-6533 Dixon, Illinois (815) 288-6691 Trinity Services, Inc. New Lenox, Illinois (815) 462-4273 8

BIO: Eric L. Robinson, Ph.D. Dr. Robinson is currently the Interim Chair of the Department of Educational Psychol- ogy and Graduate Director of the School Psychology Program at Baylor University. In addition to directing the graduate program at Baylor, Dr. Robinson has extensive experience in program evaluation. His experience includes directing the evaluation of the GEAR UP Waco grant, a $6.6 million federal grant between 12 agencies and a local school district, co-creating the Baylor Evaluation Services Center (BESC) in 2001, where he also served on its advisory committee. Dr. Robinson has completed numerous external program evaluations ranging from TAP to GEAR-UP to the National Paideia Center in Chapel Hill, NC.

Baylor Review2010

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