1. Ann T. Cutler, MD acutler@uic.edu Department of Disability and Human Development College of Applied Health Sciences University of Illinois at Chicago Supports and Gaps for Children with Autism Disability Rights Consortium 7-22-09

2. Disclosure Information  I have no relevant financial relationships with the manufacturer(s) of any commercial product(s) and/or provider of commercial services discussed in this presentation.  I do not intend to discuss commercial products or services and unapproved/investigative uses of a commercial product/device in my presentation

3. Building Capacity Screening Diagnostic Services Treatment Family Support

4. The Combating Autism Act  Authorizes approximately $920 million for expanded activities related to autism spectrum disorders over a five-year period (FY2007-FY 2011).  Activities covered under the act include screening, surveillance, education, early intervention, prompt referrals for treatment and services, and research.  For more information: http://mchb.hrsa.gov/autism/default.htm

5. Combating Autism Act Initiative Programs  Leadership Education in Neuro- developmental & Related Disorders (LEND) Training programs  Developmental-Behavioral Pediatrics Training Grants  Resource Centers  State Demonstration Grants  Research Networks and Nodes

6. What is LEND? L eadership E ducation in N eurodevelopmental D isabilities  Overarching Goal: Provide continuing education, consultation and technical assistance geared to the needs of MCH Health professionals, policymakers and families  Funded by Maternal and Child Health Bureau (MCH)  Based on the Combating Autism Act  A national network of LENDs (www.aucd.org)

7. Illinois LEND: A Partnership  University of Illinois at Chicago: IDHD Family Clinics and Units UIC Autism Center of Excellence The Autism Program (TAP) of Illinois Children’s Mental Health and Developmental Neuroscience Center  University of Chicago: Developmental and Behavioral Pediatrics  Rush University: Speech and Hearing  Collaboration with community agencies and Illinois Title Five Maternal and Child Health (MCH) Programs

8. LEND Disciplines  Child Psychiatry  Disability Studies  Family  Nursing  Nutrition  Occupational Therapy  Pediatrics  Physical Therapy  Psychology  Public Health  Social Work  Speech and Hearing

9. What’s Happening In Medicine???

10. American Academy of Pediatrics Policy  It is important that pediatricians be able to recognize the signs and symptoms of autism spectrum disorders and have a strategy for assessing them systematically. Pediatricians also must be aware of local resources that can assist in the diagnosis of and the management of ASD.  Pediatrics Vol. 120 No. 5 Nov. 2007

11. Screening and Surveillance Algorithm

13. Language Delay: Absolute indications for immediate evaluation American Academy of Child Neurology 2006 Age 12 monthsNo babbling 16 monthsNo single words 24 monthsNo functional 2-word phrases (not echolalic) Any ageAny loss of language or social skills

14. Illinois Chapter of AAP (ICAAP): Enhancing Developmentally Oriented Primary Care

15. EDOPC at a Glance Goals Improve delivery and financing of preventive health and developmental services for children birth to three Build on existing programs to develop a range of strategies for primary care settings

16. EDOPC at a Glance  Collaborative project Advocate Health Care Healthy Steps Program Illinois Chapter, American Academy of Pediatrics (ICAAP) Illinois Academy of Family Physicians (IAFP)  2005 through 2010  Multiple funders

17. EDOPC at a Glance: Who Has Been Trained

18. EDOPC Tools  Training Academic detailing in the practice for all staff Peer-to-peer faculty  Resource Toolkits  Technical Assistance Monthly conference calls Face to face consulting Phone consultation  EDOPC Web site

19. ICAAP/TAP Collaboration  Primary care physician training on early identification; especially in rural areas  Establishing a network of interdisciplinary diagnostic teams  Establishing autism medical homes for family partnerships regarding coordination of supports  Transition  Funding!!

20. Autism Advocacy Initiative  A network of IL physicians to represent physicians at the local and state level on issues related to autism  The primary mission is to advocate for evidence based treatments  To reach out and provide support to adult medical providers

21. Access to Treatment for All  Current evidence-based practices for autism:  Applied Behavior Analysis (ABA)1, [i], [ii][i][ii]  Discrete Trial Teaching1  Pivotal Response Training1  Learning Experiences: An Alternative Program for Preschoolers and Parents (LEAP)1  Treatments Considered “Promising Practices”:  Picture Exchange Communication System (PECS)Incidental TeachingStructured Teaching (TEACHH)Augmentative/Alternative CommunicationAssistive TechnologyJoint Action RoutinesCognitive Behavioral ModificationCognitive Learning Strategies Social StoriesSocial Decision-Making StrategiesSensory Integration [i] Rogers, S. J. & Vismara, L. A. (2008). Journal of Clinical Child & Adolescent Behaviors, 37 (1), 8-38. [i]  [ii] New York State Department of Public Health Early Intervention Program (2005). Report of the Recommendations: Autism/Pervasive Developmental Disorders. New York: Department of Public Health. [ii]