Engaging parents in the career development of young people
Baylor Review2010
1. 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
2. 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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3. 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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4. 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 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.
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5. 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
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6. 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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7. 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.
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8. 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 pro-
grams (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.
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9. 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
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10.
11. 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.