Issued March 2010

An Evaluation of The Autism Program of Illinois (TAP)

Eric L. Robinson, Ph.D.Interim Chair of the Department of Educational Psychology

Graduate Director of the School Psychology ProgramBaylor University

One Bear Place #7301Waco, 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 per-sonnel 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 relation-ship 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 conferenc-es 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 consulta-tion/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.

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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 ser-vice 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 criti-cal 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 com-parison across multiple years.

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Table OneSample Direct Service Activities

FY2003 - FY2009

Interpretation

It is evident that TAP has made a stunning impact with respect to direct service ac-tivities 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.

Number of Illinois Counties Impacted by TAP Service Network

10(Estimate)

101 NA

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

Resource Rooms (FCRR) throughout the Network

0 6,162 NA

Contacts between TAP Network Partners and

Community (excluding parents)

0 30,843 NA

Number of Learning Aids providing at No Cost 0 88,861 NA

TOTAL DIRECT SERVICES PROVDED** (not counting number of counties impacted)

1322 162,065 12,159

Activity 2003 2009Percent Change

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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 TwoFunded Infrastructure

2003-2009

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Infrastructure 2003 2009 Examples of Growth

University-Affiliated Training Centers (University of Chicago; SIU-Medical; SIU-Carbondale)

3 5 University of Illinois-Champaign-Urbana; Illinois State University

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

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 con-sisted 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 ser-vices 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.

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*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.

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Organization Relationship Share the Vision Conference Autism Speaks Walk Autism Conference Kennedy King College 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

Presentations or Exhibits related to TAP

National Center for Disease Control American Academy of Pediatrics Maternal Child Health Bureau University of Wisconsin - Waisman Center Association of University Centers for Developmental Disabilities

Conference Partnership

Baylor Autism Resource Center - Baylor University University of North Carolina Division TEACCH The May Institute University Centers for Developmental Disabilities worked with TAP to replicate the conference model in New

Mexico and Kansas

Professional Consultation

Autism Speaks New York Center for Autism Organization for Autism Research Easter Seals National Global Communities of Support America Speaks

Professional Collaboration

Hosted National Town Hall Meeting —Advancing Futures for Adults with Autism (AFAA).

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

Professional Leadership

Health Resources and Services Administration (HRSA)-State Implementation grant, funded by Combating Autism Act, submitted and 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.

Grant-Related Collaboration

Sample* National Network and Recognition 2003-2009

Interpretation

AsignificantartifactofTheAutismProgramofIllinois’ssuccessoverthepastsevenyearshasbeenhowitisbecomingrecognizedatthenationallevel.AsseeninTableThreeabove,therearenumerousexamplesofhowTAPismakingapositiveimpactnationallythroughavarietyofmethods.OneapproachusedbyTAPisthroughconferencepresentationsandexhibits.TAPhasbeenrepresentedatamixtureofprofessionalconferences(IABA;NASP)aswellasleadingpro-grams(AutismSocietyofAmerica)intheUnitedStates.TheAutismProgramofIllinoishasalsopartneredwithnationallyrecognizedorganizationssuchasAmericanAcademyofPediatricsandtheMaternalChildHealthBureau. TAPhasmadeanoutstandingimpactthroughcollaborationandconsultationwithotheruniversitiesandorganizations.RangingfromanalliancewithAutismSpeaksandtheOrganizationforAutismResearch,toprovidingconsultationtotheUniversityofNorthCarolinaandBaylorUniversity,TAPisbecoming increasinglyviewedasanorganizationthatwillreachbeyondthestateofIllinoisandimpacttheUnitedStates. A positive component of recognition through conference presentations, collaboration,andconsultationisthatTAPappearstobemorphingintoanationalleaderwithrespecttoASD.ThiscanbeseenthroughTAPhostingtwoimportanteventsin2009-2010;1)NationalTownHallMeetingofAdvancingFuturesforAdultswithAutism(AFAA);and2)thePremierofHBOMovie,“TempleGrandin”andRoundtablediscussion.ThisNationalTownHallMeeting forAdvancingFutures forAdultswithAutism(AFAA)wasaspectaculareventthat involvedsimulcast in16citiesacrossall regionsof theUnitedStates includingAtlanta,Boston,Dallas/Ft.Worth,LongIsland,Miami,Philadelphia,Phoenix,Sacramento,andWashington,D.C.Themeeting,designedandproducedbytherenownedAmericaSpeaksorganization,createdcrucialdiscussionsonthenextstepsinthelivesofadultswithAutismandengagedcloseto1000participantsacrossallsites.AsthenumberofchildrendiagnosedwithanASDcontinuestoincreasesignificantly,itisimperativethatplansaremadeforthesechildrenastheytransitionintoadulthood.Byhostingthismeeting,TAPwasputinthenationalforefrontofprogressiveprogrammingforadultASDservices. TheothersignificanteventthatdemonstratesTAP’sstatusasanationalleaderinASDwasbeingselectedtohostthepremieroftheHBOMovie,“TempleGrandin.”BeingchosentohostthiscriticallyacclaimedmovieonthelifeofTempleGrandin,averysuccessfulwomanwithASD.TheAutismProgramofIllinoisisbeingrecognizedbythenationalmediainwaysthataredifficulttoquantify.Further,havingaroundtablediscussionafterthepremierthatincludedTempleGran-din,a15-year-oldboywithAsperger’sfromtheChampaign,IL,areaandChicagoCBS2AnchorJimWilliams,identifieseventssuchasthisascentralinteractionandtoincreasing,andTAP’sroleasaforcefulcontributortoAutismawarenessandadvocacyatthenationallevel.

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TAP TRAINING CENTERSUniversity of Illinois-ChicagoChicago, Illinois (312) 413-1647

The Hope InstituteSpringfield, Illinois (217) 525-8332

Southern Illinois UniversityCarbondale, Illinois (618) 536-2122

Illinois State UniversityNormal, Illinois (217) 244-1395

TAP SERVICE CENTERSCharleston Transitional FacilityCharleston, Illinois (217) 348-3869

Easter Seals Children’s Development Center RockfordRockford, Illinois (815) 965-6745

Easter Seals Metro ChicagoChicago, Illinois (312) 491-4110/(312) 564-4060

Easter Seals Peoria-BloomingtonPeoria, Illinois (309) 686-1177Bloomington, Illinois (309) 663-8275

UCP Easter Seals HeartlandMaryville, Illinois (618) 288-2218

Kreider Services, Inc.Dixon, Illinois (815) 288-6691

Trinity Services, Inc.New Lenox, Illinois (815) 462-4273

TAP OUTREACH CENTERSEaster Seals LaSalle and Bureau CountryOttawa, Illinois (815) 431-9126

Illinois Center for AutismFairview Heights, Illinois (618) 632-9077

TAP COLLABORATIVE PARTNERSAmerican Academy of Pediatrics- Illinois ChapterChicago, Illinois (312) 733-1026 ext. 203

ARC of IllinoisHomewood, Illinois (708) 206-1930

Developmental Disability Services Metro EastBelleville, Illinois (618) 236-7957

Foundation for Autism Services Today & To-morrow (FASTT)O’Fallon, Illinois (618) 530-0666Maryville, Illinois (618) 960-4663

Have DreamsPark Ridge, Illinois (847) 685-0250

Illinois Early Childhood Intervention Clearing-houseSpringfield, Illinois (217) 522-4655

Little Friends Center for AutismNaperville, Illinois (630) 355-6533

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.