autism and other developmental disorders: legislation – current and future possibilities george s....
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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
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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
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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
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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
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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
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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
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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
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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!