Early Detection &

Medical Home Webinar for:

Autism NOW: The National Autism Resource and
Information Center
 Presenters:
Georgia Winson – Executive Director, The Hope Institute for Children and Families
Ola Aqel – Northern Health Services Facilitator, TAP, IMPACC project
Julie Muñoz-Nájar – Central Health Services Facilitator, TAP, IMPACC project
Sandy Tiahrt – Southern Health Services Facilitator, TAP, IMPACC project
Webinar Objectives
 Overview of The Autism Program of Illinois
 Overview of Project IMPACC goals
 Early Autism Detection Screening and Referral
 Medical Home Implementation
 Linking Early Detection to Medical Home in ASD
About The Autism Program of Illinois

 12 centers
 4 university partners
 More than 30 collaborative
partners
 Impacts more than 16,000
families annually
 Largest statewide network in
the country for Autism
services
 The Autism Program of Illinois

 Diagnosis, treatment and support of children with ASDs and their

families
 Training for parents, providers and educators
 Community Planning
 Policy development
 Resource support through Family and Community Resource Rooms at
centers statewide, providing items for loan and clinical support
 Lifespan support through involvement in the national initiative,
Advancing Futures for Adults with Autism
 Accessibility support through Community Avenues for Autism, an
initiative providing tools for using community resources like
museums, airports and libraries

For more information: 217.525.8332 or www.theautismprogram.org

 ASD System Overview in
IL
 Challenges
 Emphasis on intervening late resulting in costly, intensive, restrictive

service
 Inadequate funding and commitment to quality community-based

service
 Fragmentation and poor coordination across service sectors and across

the lifespan
 Inadequate and poorly trained workforce limiting access to quality

service
 Opportunities
 Growing consensus

 Legislative commitment

 Collaborative relationships with key governmental and community

stakeholders
Illinois State Implementation
Grant - IMPACC
 Funding: HRSA and MCHB funding for the CAAI State
Implementation Grants for Improving Services for Children
and Youth with Autism Spectrum Disorders
 General Goal: Advance an enduring, comprehensive,
coordinated system of care for individuals with ASD
 Specific Goals:
1. Adequate public and private funding
2. Organized community services
3. Transition to adult services
4. Family/professional partnerships
5. Early, continuous screening, evaluation, diagnosis and
intervention
6. Access to comprehensive service - Medical Home (MH)
Project IMPACC

 Built on existing statewide network

 Project IMPACC worked toward goals in all 6 grant
initiatives:
 Financial Initiatives
 Accessibility to Community Services
 Transitions
 Family / Provider Partnerships
 Early Autism Detection and Referral
 Medical Home
Financial and Accessibility
Initiatives
 Financial
 Billing procedures outlined
 Pilot Program developed
 Accessibility
 Cultural Competency Training
 Accessibility kits for families
 Spanish translation of Medical Accessibility Kit
Transition in Illinois
 AFAA (Advancing Futures for Adults with Autism)
 National Town Hall at 16 sites across the country on November
13, 2009
 Congressional Briefing on July 15, 2010 www.afaa-us.org
 Building Bridges to the Future
 Six nonprofit agencies to serve the needs of special education
students and their families during transition to adulthood
 Transition Outreach Specialists at the 6 agencies will:
 Be primary liaison and attend IEP (Individual Education Plan) meetings
as part of each student’s interdisciplinary team
 Develop and maintain linkages between families, Special Education staff,
and adult service providers by ensuring that transition is part of the IEP
 Provide training and advocate for parents, guardians, and students
 Assist in establishing eligibility for community services for students
Family / Provider Partnerships
 Family Advisor Program
 Advocacy trainings and quarterly meetings provided to families
 Information packets for families to present to their child’s
physician
 Physician Engagement
 Early Autism Detection and Referral Training created by TAP
with distribution through ICAAP
 Training provided to practices around the state:
 100 practices trained
 800+ Medical professionals trained
 Over 1.5 million Patients affected
Early Autism Detection,
Screening, & Referral
 Learning Objectives
 Define autistic spectrum disorder
 Recognize the earliest signs of autism
 Routinely assess young children for autism
 Identify common misconception
 Learn how to refer to early intervention, special education,
and specialists for children who show signs of autism
 Become familiar with the team approach to diagnosis and
the importance of evidence based treatment of autistic
spectrum disorder
Practices
 Getting into the practices
 Illinois Department of HFS (Medicaid program) provides us with a
list of physicians throughout the state of IL
 Through our family advisor program
 Referrals from other IL physicians

 Steps to approaching the practices

 Going to the practice in person
 Making phone calls to the practice
 Talking to the front office staff or the doctor to approve the training
Training
 Provided for the practices:
 45 mins to an hour training
 Lunch
 Autism resource toolkit for clinicians (AAP- American
Academy of Pediatrics)
 First signs screening kit
 Medical Accessibility Kits (English & Spanish)
 Screening tools & education for pediatric providers
 (Council on Children with Disabilities et al., 2006; Johnson et al., 2007)
 Certification of attendance
Challenges
 Physicians that do not have time
 Some Physicians lack interest in autism
 Going back to the practice 2 to 3 times
 Unsure of practice screening behaviors and
utilization of screening tools post presentation
Autism Basic Facts
 Presents at birth with onset of symptoms before 36
months
 Accurate diagnosis possible at 18-24 months or
earlier
 Parents first concerns around 18 months but
diagnosis is typically not until 3 years or older
 Cost of lifelong care can be reduced by 2/3 with early
diagnosis and intervention.
 (Jarbrink & Knapp, 2001)
IMPACC Medical Home Project

 Definitions
 Benefits for disabilities
 Specifically autism
 Design of IMPACC Project’s MH
Medical Home Definitions
 Broad
 A patient-centered medical home integrates patients as active participants in their
own health and well-being. Patients are cared for by a physician who leads the
medical team that coordinates all aspects of preventive, acute and chronic needs of
patients using the best available evidence and appropriate technology. These
relationships offer patients comfort, convenience, and optimal health throughout
their lifetimes. -American Academy of Family Physicians, Board 2008

 More Specific
 A 2002 AAP policy statement, includes operational characteristics: accessible,
continuous, comprehensive, family-centered, coordinated, compassionate, and
culturally sensitive care. A medical home is a community-based primary care
setting that integrates quality and evidence-based standards in providing and
coordinating family-centered health promotion in wellness, acute and chronic
condition management.
 Some models possess aspects designed to help practices manage the higher level of
care needed for children with special needs 
Medical Home Logic Model

(Homer et al., 2008)

How MH benefits ASD
 The critical need for early identification and treatment
requires early, appropriate engagement of families,
pediatricians and family practitioners
 (Council on Children with Disabilities, 2007)
 Parents of children with autism, compared to parents of
children with other special healthcare needs, were less likely
to report care consistent with the medical home model
 (Brachlow et al., 2007)
 Emphasis on family and person centered care enhances self
advocacy, continuity and quality
Design of IMPACC Medical
Home
 Indices
 Center for Medical Home Improvement
 Pediatric Medical Home Family Index
 Pediatric Medical Home Index
 Evaluation
 Report & review
 Quality Improvement Team (QIT)
 Team members
 Goal setting
 Frequent meetings
Design of IMPACC Medical
Home
 Chronic Care Management
 Care Coordination
 Care Plans
 Specialists and non-medical providers
 Resources
 AAP’s National Center for Medical Home Implementation
 IL Chapter of AAP website (ICAAP)
 CMHI – Center for Medical Home Improvement
 Utah’s Medical Home Portal
 IL Title V program: Div. of Specialized Care for Children,
MH page
Again, why a Medical
Home???
 Build partnerships between parents and physicians
 Enhance pediatric comprehensive care for children with
special needs
 (American Academy of Pediatrics, 2002; Cooley, 2004)
 Establish a Quality Improvement Process in a medical
practice
Take Away Thoughts
 Better adherence to best practices (Council on Children with Disabilities et al.,
2006)
 Medical home practices demonstrated more efficiently managed healthcare
through better care coordination and improved continuity of care.
 Reduction in stress levels for families; increased satisfaction with provider and
care received.
 Better adherence to medication and therapy recommendations.
 Increase in development of chronic condition care plans.
 Better adherence to health supervision visits and more emphasis on preventative
care.
 Reduction in sick visits (over time) and fewer days missed from school and work.
 Reduction in ER visits and hospitalizations (over time).
 Reduction in overall healthcare costs (over time).
 Better and enhanced use of community resources.
 Beginning to see some private payers reimburse individual practices for care
coordination services, eg. Blue Cross/Blue Shield, United Healthcare.
The Essential Element for families
and professionals …
References
 American Academy of Pediatrics, Medical Home Initiatives for Children with
Special Needs Project Advisory Committee (2002). The medical home: Policy
statement: Organizational principles to guide and define the child health care
system and/or improve the health of all children. Pediatrics, 1, 110, 184-186.
 Brachlow, A.E., Ness, K. K., McPheeters, M. L., Gurney, J. G. (2007).
Comparison of indicators for a primary care medical home between children
with autism or asthma and other special health care needs, National Survey of
Children’s Health, Archives of Pediatrics and Adolescent Medicine, 161, 399-
405.
 Cooley, C. W. (2004). Redefining primary pediatric care for children with
special health care needs: the primary care medical home. General Pediatrics,
16, 689-692.
 Council on Children with Disabilities (2007). Role of the medical home in
family-centered early intervention services. Pediatrics,120, 1153-1158.
References (continued)
 Council on Children with Disabilities, Section on Developmental Behavioral
Pediatrics, Bright Futures Steering Committee, Medical Home Initiatives for
Children with Special Needs Project Advisory Committee (2006). Identifying
infants and young children with developmental disorders in the medical home:
An algorithm for developmental surveillance and screening. Pediatrics, 18, 1,
405-420.
 Homer , C. J., Klatka, K., Romm, D., Kuhlthau, K., Bloom, S., Newacheck, P.,
Van Cleave, J., and Perrin, J. M. (2008). A review of the evidence for the
medical home for children with special health care needs. Pediatrics, 122,
e922-e937.
 Jarbrink, K., Knapp, M., (2001). The economic impact on autism in
Britain. London School of Economics study, 5, 7-22.
 Johnson, C. P., Myers, S. M., and the Council on Children with Disabilities
(2007). Identification and evaluation of children with autism spectrum
disorders. Pediatrics, 120, 1183-1215.
TAP Administrative Offices

Noll Medical Pavilion

5220 S. Sixth Street Rd.
Suite 1700
Springfield, IL 62703
217.525.8332

www.theautismprogram.or