Autism and Other Developmental Disorders: Legislation

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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

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 CDCs 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, SLs 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 TTA,
  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
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• 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

• Expanding the Promise

• Passed both Houses
• Signed by President
• Current Law
• Waiting for appopriations

• 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

• Speech Language
• Health Administration
• Occupational Therapy
• Physical Therapy
• Special Education
• Parents and consumers

• Developmental Pediatrics
• Nursing
• Social Work
• Audiology
• Pediatric Dentistry
• Nutrition
• Psychology
• Genetics

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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 AUCDs 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?id311
• Read In Brief for legislative updates
  http//www.aucd.org/template/page.cfm?id164

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Thanks to Everyone!