1. Cordelia Robinson, Ph.D., RN Professor of Pediatrics and Psychiatry CU School of Medicine 1 Issues and Resources for Intervention for children with Autism Spectrum Disorder in Colorado

2. Autism Issues to Keep in Mind 1. There is no definitive biologic test for ASD’s, however they are thought to be highly heritable. 2. Clinical diagnosis is based on three core behavioral dimensions: Communication delay or deficit Impaired social interaction Repetitive behaviors and restricted interests 3. There is a broad range of functioning among people with a diagnosis. 2

3. 3 Total = 25,451 Autism Spectrum Disorder in Colorado Not based on current numbers

4. Issue – Implications of DSM-V Does away with Spectrum; term is Autism Combines Social and Communication domains Proposes a Severity Rating System 4

5. Proposed Dimensional Ratings for ASD in DSM-V Social Communication Fixated Interests and Repetitive Behaviors Requires very substantial supportMinimal social communicationMarked interference in daily life Requires substantial support Marked deficits with limited initiations and reduced or atypical responses Obvious to the casual observer and occur across context Requiring support Without support, some significant deficits in social communication Significant interference in at least one context Subclinical symptoms Some symptoms in this or both domains; no significant impairment Unusual or excessive but no interference Normal variation Maybe awkward or isolated but WNL WNL for Developmental level and no interference Proposed DSM Severity Rating System. Lord, C. (2011). What Would "Better" Diagnosis of ASDs Look Like?: DSM-5 and Beyond, (AUCD webinar) http://www.aucd.org/resources/webinar_detail.cfm?event=2504&parent=740.http://www.aucd.org/resources/webinar_detail.cfm?event=2504&parent=740 5

6. Eligibility for Services in Colorado ASD diagnosis eligible for Part C, Early Intervention Colorado http://www.eicolorado.orghttp://www.eicolorado.org Early Intervention Colorado Autism Guidelines for Infants and Toddlers http://www.eicolorado.org/Files/EIColorado%2 0Autism%20Guidelines%2010-21-10_FINAL.pdf http://www.eicolorado.org/Files/EIColorado%2 0Autism%20Guidelines%2010-21-10_FINAL.pdf Colorado Medicaid children with Autism Waiver 75 eligible at one time, waiting list is over 250 children minimum time on 3 years must go off at age 6 6

7. Eligibility for Services in Colorado Educational system eligibility based upon educational needs School districts vary greatly A medical diagnoses of autism does not make a child eligible for school services 7

8. Eligibility for Services in Colorado Adults Currently only eligible if meet developmental disability criteria. Currently Community Centered Boards base criteria almost inclusively on IQ below 70 8

9. Colorado Insurance Legislation 1. Denial of insurance coverage - 1993 SB93-113 Insurance Concerning the Coverage for Disorders Related to Autism in Health Care Coverage Policies Declares Autism a Medical not a Mental Health Condition 2. Medicaid Children with Autism Waiver - 2004 SB04-177 to get access to behavioral services for children with autism 9

10. Colorado Insurance Legislation 3. Access to Mental Health Care – 2009 SB09-244 Clarifies access to Mental Health Care for Co-occuring Conditions 4. Health Insurance Mandated Autism Treatment - 2009 SB09-244 http://www.autismcolorado.orghttp://www.autismcolorado.org 10

11. What is the Evidence Base for Intensive Treatment for Autism 2000 National Research Council Recommendations of 20 hours per week of direct intervention fostered the push for insurance legislation Based on consensus of opinion of those who provided comprehensive early intervention against community comparison groups Only common metric across the intervention - hours Research now calling for more specific documentation of intervention. 11

12. What is the Evidence Base for Intensive Treatment for Autism AHRQ Report Comparative Effectiveness Review Number 26 http://www.effectivehealthcare.ahrq.gov/ehc/products/106 /651/Autism_Disorder_exec-summ.pdf http://www.effectivehealthcare.ahrq.gov/ehc/products/106 /651/Autism_Disorder_exec-summ.pdf Behavioral Educational Medical and related interventions Allied health Comprehensive and Alternative Medicine 12

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14. Priorities for Intervention A means of Communication Predictable Daily Routines

15. Message to Primary Care Keep general health in mind Pay attention to sleep, nutrition, self care, any hint of self injury or aggression These questions should be asked specifically

16. Autism Speaks Mission At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders. We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals. Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle. Autism Speaks. It's time to listen.

17. Autism Treatment Network http://www.autismspeaks.org/family-services/tool-kits

18. Autism Treatment Network Autism Speaks provides many resources

19. The Children’s Hospital Sleep Lab Picture Book of Michael Getting a Sleep Study

20. Michael is going to Children’s Hospital to be in a sleep study so that his doctors can learn more about how he sleeps.

21. When you come to the lab, we will see how tall you are and how much you weigh.

22. Autism Medical Home Website has many suggestions http://www.waisman.wisc.edu/nmhai

23. Cordelia Robinson Rosenberg, PhD, RN Professor of Pediatrics and Psychiatry Director, JFK Partners Cordelia.rosenberg@ucdenver.edu 303-724-7680 23