Improving the Lives of all Affected by Autism.

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Improving the Lives of all Affected by Autism.

• Facing Challenges of Providing Services to
• Children with Autism Spectrum Disorder
• December 8, 2008
• Washington, DC
• Lee Grossman President and CEO

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• The Autism Community is 10s of Millions Large
• GROWING and affecting all in our society

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Autism Facts
Autism Facts

• 1 in 150 births
• Over 1 to 1.5 million Americans
• Approximately 12.5-17 million family members
• Fastest-growing developmental disability --
  rate?10 - 17
• Growth comparison during the 1990s
• U.S. population increase 13
• Disabilities increase 28.4
• Autism increase 1,354
• US 90 billion annual health care cost
• 90 of costs are in adult services
• Cost of treatment can be reduced by 2/3 with
  early diagnosis and intervention
• In 10 years, the annual cost will be 200-400
  billion

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Autism is an epidemic
Number of Students Identified with Autism
Spectrum Disorders in Indianas Public
Schools(Source Indiana DOE- Federal
Unduplicated Child Count)
State ID Rate (2007-08) 1/113
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A tidal wave is coming
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Autism Facts
Autism Facts

• 1 in 150 births
• Over 1 to 1.5 million Americans
• Approximately 12.5-17 million family members
• Fastest-growing developmental disability --
  rate?10 - 17
• Growth comparison during the 1990s
• U.S. population increase 13
• Disabilities increase 28.4
• Autism increase 1,354
• US 90 billion annual health care cost
• 90 of costs are in adult services
• Cost of treatment can be reduced by 2/3 with
  early diagnosis and intervention
• In 10 years, the annual cost will be 200-400
  billion

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Autism is a social, economic and health crisis
Autism is a social, economic and health
crisis Autism is a National Emergency
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Autism is an epidemic
Autism is an EPIDEMIC
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Autism is
Autism is Genetically based, neurological
condition
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Autism is (continued)

• Complex Spectrum Disorder
• Developmental Disability
• Neurological Disorder
• Knows no racial, ethnic, or social boundaries
• Impacts social interaction, communication skills
  and the senses
• No known cause or cure
• No known singular effective treatment modality

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The Realities of Autism
The Realities of Autism

• Complex disorder
• Unique research and therapeutic interventions
  needed
• Multifaceted and multi-agency approach
• Lifespan needs
• Population dramatically increasing
• Economic and Social Crisis
• Autism is Treatable

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Autism is an epidemic
A Dramatic, Proactive, Aggressive and
Coordinated Response from Multiple Federal
Agencies
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Autism is a social, economic and health crisis
Federal Governments Response

• Childrens Health Act of 2000
• NIH Research and Autism Centers of
  Excellence
• CDC - Data collection on prevalence and
  characteristics
• HHS ACF, CMS, and HRSA
• Interagency Autism Coordinating Committee

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Autism is
Federal Service Programs

• Individuals with Disabilities Education Act
• Early intervention and preschool services
• Special education and related services
• Rehabilitation Act
• Job training and employment services
• Maternal and Child Health Block Grant
• Health services for children with special needs
• Medicaid waiver services
• Health and independent living supports

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• 2008 Federal Policy Activities

• Combating Autism Act
• Amendment to the Defense Authorization Act
• Expanding the Promise for Individuals with Autism
  Act
• Teacher Education for Autistic Children Act
• Empowering Children with Autism through Education
  Act
• Global Autism Assistance Act
• Fairness in Autism Treatment Act
• Helping HANDS for Autism Act

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Autism is a social, economic and health crisis
Autism Spectrum Disorder Services
Roadmap http//www.nimh.nih.gov/autismiacc/asdroa
dmap.pdf
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• The increased number of children and adults
  diagnosed with ASD is a growing and urgent
  concern for families, service providers, and
  policy-makers, as the nations existing health,
  education, and social service systems struggle to
  respond to the service needs of this population
  in a comprehensive manner. Though a number of
  effective services and funding options for
  individuals with ASD exist, they tend to be
  scattered, fragmented, and poorly coordinated.
  There are no widely accepted or implemented
  service guidelines for ASD, and there are
  significant gaps in knowledge about ASD among the
  professionals serving these individuals. Even
  where services are available, public and private
  financing are often inadequate to meet the needs
  of most individuals with ASD and their families.
  The success and well being of individuals with
  ASD and their families are affected by, and in
  large part, depend on communities and their
  resources. Thus, we must respond by developing
  community systems that are integrated across
  service sectors and are collectively responsible
  for achieving appropriate individual, family, and
  community outcomes.

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The Combating Autism Act(Public Law 109-416)

• Recognized Autism as a National Health Priority
• Authorized approximately 1 Billion in Autism
  related activities through NIH, CDC, HRSA and
  others
• Re-established the IACC
• Coordinate Activities among the Federal Agencies
• Advise the Secretary of Health and Human Services
• Develop a Strategic Plan for ASD Research

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COMBATING AUTISM ACT

• On December 19, 2006, President Bush signed
  the landmark Combating Autism Act of 2006 (CAA).
  This critical legislation recognized autism as a
  national public health priority, and authorized a
  significant increase in funding for autism
  research, diagnosis and early intervention. In
  all, this legislation provided for almost 1
  billion for autism related activities at the
  National Institutes of Health, the Centers for
  Disease Control and Prevention, the Health
  Resources and Services Administration, and other
  federal agencies.

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IACC Services Subcommittee

• Meeting Monthly
• Review and Update the Roadmap
• Coordinate Services Activities
• Issued RFI
• Town Hall Meetings
• Expansion of the participants

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The Realities of Autism
Expanding the Promise for Individuals With
Autism Act of 2007

• Treatments, Interventions, and Services
  Evaluation Task Force
• Demonstration Grants for Coverage of Treatments,
  Interventions, and Services
• Planning and Demonstration Grants for Services
  for Adults
• Expanding Access to Post-diagnosis Care
• GAO Study On Service Provision and Financing
• Emerging Needs Protection and Advocacy Program
• National Technical Assistance Center

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State Activities

• State Agency Task Forces
• Private Insurance legislation
• Teacher training and supports
• Medicaid waivers
• First responders training

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Human Rights
Where We Need To Be
Expansion of C.A.R.E. Treating the Medical
Aspects of Autism Environmental Concerns and
Neurotoxicology Adult Issues being
Addressed Psychosocial and Behavioral
Interventions Continued and Growing
Awareness Focus on Services and Interventions The
Autism Community Coming Together
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Estimated Number of Individuals with Autism in
Selected Asian Nations and the U.S., 2007
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The Environment

• Reasonable attention has been focused on the
  possibility of neurotoxicants and/or
  environmental health concerns as culprits in
  damaging the gene construct and triggering the
  symptoms known as ASD

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The Environment

• Factors contributing to climate change and global
  warming are also the same factors contributing to
  the rise in Autism

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Human Rights
Human Rights

• Systematically discriminated and subjected to
  global abuses
• Moral and Ethical Obligation
• Can no longer accept that this is hopeless
• Must demand that action be taken now
• Most compelling issue of our time

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Human Rights Declaration

• The health care indispensable to a full and
  meaningful life is a fundamental right of all
  human beings. In every legal culture of the
  world, in the several codifications of the
  international communitys recognition and
  commitment to fundamental human rights, and in
  the bills of rights of virtually every country
  essential health care has been recognized as a
  fundamental human right. But with Autism, there
  is a pervasive discrimination on an equally
  global scale. Proper and timely access to medical
  diagnosis and treatment are typically not
  available and where they are, they are
  discouraged or simply withheld. Services,
  virtually non existent, are typically inadequate
  and inappropriate when available. Regardless of
  ethnicity, economic status, nationality, religion
  or country, individuals with Autism and their
  loved ones are systematically discriminated
  against and left to fend for themselves to
  provide the most meager of supports and
  interventions. The numbers of those diagnosed
  with Autism are incredibly high, already of
  pandemic proportions, and continue to rise
  unabated. When confronted by the seriousness and
  consequences of the condition, by the numbers of
  affected individuals and families, and by the
  scale and pervasiveness of the discrimination
  they suffer in the access to proper and timely
  health care and services, we must recognize that
  Autism is becoming the most important human
  rights health issue in the world. Indeed,
  undisputed facts and greater moral maturity
  compels the world to see in the predicament of
  individuals with Autism and other mental
  disabilities the new human rights frontier of our
  time.

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• HOPE

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Treatment Guided Research Initiative
Treatment Guided Research Initiative (TGRI)

• Identifying environmental contributors
• Providing pragmatic solutions
• Developing the identification of final common
  pathways, injury interventions and improvement

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TGRI
When treating, do no harm To not treat may be
doing the GREATEST HARM
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Whole Body Condition

• Prediction
• Prevention
• Reversal

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Advocacy
Delivering on Our Message of Hope

• Environment
• Human Rights
• Whole Body Medical Condition
• Treatment Guided Research
• Lifespan Services

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Advocacy

• Passion
• Dedication
• Commitment
• Communication
• Mobilization
• Moral and Ethical Authority
• United

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Improving
Improving the Quality of Life Creating Opportuniti
es Maximizing Potential
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The Goal
The Goal
Autism, in the next generation, will become an
accepted part of the human condition
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Mission
Improving the lives of all those affected by
Autism
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ASA
Autism Society of America www.autism-society.org