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

George S. Jesien, Ph.D.Association of University Centers on

Disabilities

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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

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Rapid Growth Over the Last 10 Years

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.

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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

5* Autism Spectrum Disorders (ASD) Roadmap - 2005

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

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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

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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

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

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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.

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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)

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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

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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

Current Legislative Status

Combating Autism Passed both Houses Signed by President Current Law Waiting for appopriations

Expanding the Promise Introduced in House &

Senate Still to come

Committee Markup Floor Action- both Houses Conference Presidential signing or? Appropriations

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LEND Network

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

Leadership Faculty & students from 13 core disciplines Developmental

Pediatrics Nursing Social Work Audiology Pediatric Dentistry Nutrition Psychology Genetics

Speech & Language Health Administration Occupational Therapy Physical Therapy Special Education

Parents and consumers

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

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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

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Thanks to Everyone!