Autism and Other Developmental Disorders: Legislation – current and future possibilities

1. Autism and Other Developmental Disorders: Legislation – current and future possibilities George S. Jesien, Ph.D.Association of University Centers on Disabilities

2. Prevalence of Autism Spectrum Disorders --- Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2002 Corresponding author: Catherine Rice, PhD, National Center on Birth Defects and Developmental Disabilities, CDC. Reporting Period: 2002. Results: For 2002, of 407,578 children aged 8 years in the 14 surveillance areas, 2,685 (0.66%) were identified as having an ASD. ASD prevalence per 1,000 children aged 8 years ranged from 3.3 (Alabama) to 10.6 (New Jersey), with the majority of sites ranging from 5.2 to 7.6 (overall mean: 6.6 [i.e., one of every 152 children across all sites) * Morbidity and Mortality Weekly Report (MMWR): February, 2007 http://www.cdc.gov/MMWR/preview/mmwrhtml/ss5601a2.htm

3. Rapid Growth Over the Last 10 Years

4. Challenges Effective services and funding options tend to be scattered, fragmented, and poorly coordinated No widely accepted or implemented service guidelines for ASD, Significant gaps in knowledge about ASD among the professionals Financing is often inadequate to meet the needs of most individuals with ASD and their families.

5. What do we need to do? • Success and well being of individuals with ASD and their families depend on communities and their resources. • We need community systems that: • Are integrated across service sectors, and • Are collectively responsible for achieving appropriate individual, family, and community outcomes. • Training and technical assistance for parents and professionals * Autism Spectrum Disorders (ASD) Roadmap - 2005

6. Characteristics of Autism Related Congressional Activity Bipartisan Numerous groups and constituencies Vocal and committed grass routes Champions in high places Personal knowledge & experience Need to maximize consensus

7. Two Over-riding Need Areas • Research, knowledge and understanding • Incidence • Causes & Co-morbidities • Early Identification • Effective Treatments • Services and supports • Early Intervention • School years • Adolescents & Adult

8. Combating Autism Act • President signed PL 109-416 last year • Authorizes $168 million in FY08, $25 million more than FY07 • 114.5 for NIH research into causes, diagnosis, early detection, intervention, and treatment • $16.5 million for the CDC’s Disabilities Surveillance and Research Program • $37 million to HRSA to increase awareness, reduce barriers to screening and diagnosis, promote evidence-based interventions for individuals with autism, and train professionals to utilize valid and reliable screening tools to diagnose and provide evidence-based interventions

9. Major Provisions NIH: Basic and clinical research in multiple fields into causation, diagnoses, early detection, prevention, control, intervention & cure for ASD CDC: Epidemiologic surveillance programs & Regional Centers of Excellence HRSA: Information, establishment of lead agency, screening tools, expand interdisciplinary training, promotion of evidence based interventions

10. Combating Autism Act and LEND • Authorizes Secretary of HHS to expand existing & develop new interdisciplinary Leadership Education in Neurodevelopmental Disabilities (LEND) programs • Intent of Congress - provide existing LENDs funding to immediately train additional developmental pediatricians, clinical psychologists, S&L’s and other diagnosticians and interventionists • Begin to develop programs in States that do not have a LEND. • Emphasis on interdisciplinary, cultural competence, family centered care and leadership development.

11. Expanding the Promise to Individuals with Autism Act • Sens. Hillary Clinton (D-NY) and Wayne Allard (R-CO) introduced S. 937 • 11 co-sponsors (3R, 1 I, 7D) • Reps. Mike Doyle (D-PA) and Chris Smith (R-NJ) introduced identical companion bill (H.R. 1881) • 65 co-sponsors (17R, 50D)

12. Expanding the Promise Act • Authorizes demonstration and planning projects to expand services and supports for children and adults • Grants to states to expand access to post-diagnosis care and to reduce delays in getting services • GAO report on improving financing structure • Provision of statewide interdisciplinary T&TA, continuing education, and promote community based services – national initiative to UCEDDS) • Expansion of Protection and Advocacy • National Technical Assistance Center to inform state agencies, organizations and families

13. Empowering Children with Autism through Education Act • Rep. Yarmouth (D-KY) introduced H.R. 2609 on June 7 • Establishes a task force to identify and disseminate evidence-based educational strategies and promising best practices • Intended to integrate into reauthorization of NCLB Act

14. Current Legislative Status Combating Autism Expanding the Promise Introduced in House & Senate Still to come Committee Markup Floor Action- both Houses Conference Presidential signing or? Appropriations • Passed both Houses • Signed by President • Current Law • Waiting for appopriations

15. LEND Network

16. Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Programs • Funded by MCHB • Development of Leadership skills • Interdisciplinary clinical services • Unique needs of children with special health care needs & their families • Cultural competency • Family-based care

17. Developmental Pediatrics Nursing Social Work Audiology Pediatric Dentistry Nutrition Psychology Genetics Speech & Language Health Administration Occupational Therapy Physical Therapy Special Education Parents and consumers Leadership Faculty & students from 13 core disciplines

18. Services & Training (FY06) • 88,912 clients seen in clinics • 56% minorities • 69,040 served in the community • 44% minorities • Nearly 2,000 interdisciplinary long-term trainees • Over 812,725 people participated in outreach & continuing education opportunities

19. Policy Resources • Check out AUCD’s Action Center for • Contact info on congressional delegation • Co-sponsorship status of elected officials • Read full text of legislation of interest • Autism Policy Page: http://www.aucd.org/template/page.cfm?id=311 • Read In Brief for legislative updates: http://www.aucd.org/template/page.cfm?id=164

20. Thanks to Everyone!