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Improving the Lives of all Affected by Autism.

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

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Improving the Lives of all Affected by Autism.

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  1. 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

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

  3. Autism Facts Autism Facts • 1in 150births… • Over 1 to 1.5 million Americans… • Approximately12.5-17 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 $90billion 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 $200-400billion

  4. Autism is an epidemic Number of Students Identified with Autism Spectrum Disorders in Indiana’s Public Schools(Source: Indiana DOE- Federal Unduplicated Child Count) State ID Rate (2007-08): 1/113

  5. A tidal wave is coming…

  6. Autism Facts Autism Facts • 1in 150births… • Over 1 to 1.5 million Americans… • Approximately12.5-17 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 $90billion 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 $200-400billion

  7. Autism is a social, economic and health crisis Autism is a social, economic and health crisis Autism is a National Emergency

  8. Autism is an epidemic Autism is anEPIDEMIC

  9. Autism is: Autism is: Genetically based, neurological condition

  10. 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

  11. 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

  12. Autism is an epidemic A Dramatic, Proactive, Aggressive and Coordinated Response from Multiple Federal Agencies

  13. Autism is a social, economic and health crisis Federal Government’s Response • Children’s 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

  14. 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

  15. 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 2008 Federal Policy Activities

  16. Autism is a social, economic and health crisis Autism Spectrum Disorder Services Roadmap http://www.nimh.nih.gov/autismiacc/asdroadmap.pdf

  17. 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 nation’s 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.

  18. 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

  19. 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.

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

  21. 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

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

  23. 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

  24. Estimated Number of Individuals with Autism in Selected Asian Nations and the U.S., 2007

  25. 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

  26. The Environment Factors contributing to climate change and global warming are also the same factors contributing to the rise in Autism

  27. 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

  28. 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 community’s 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.

  29. HOPE

  30. 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

  31. TGRI When treating, do no harm To not treat may be doing the GREATEST HARM

  32. Whole Body Condition Prediction Prevention Reversal

  33. Advocacy Delivering on Our Message of Hope • Environment • Human Rights • Whole Body Medical Condition • Treatment Guided Research • Lifespan Services

  34. Advocacy • Passion • Dedication • Commitment • Communication • Mobilization • Moral and Ethical Authority • United

  35. Improving … Improving the Quality of Life Creating Opportunities Maximizing Potential

  36. The Goal The Goal Autism, in the next generation, will become an accepted part of the human condition

  37. Mission Improving the lives of all those affected by Autism

  38. ASA Autism Society of America www.autism-society.org

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