Improving the Lives of all Affected by Autism.

Facing Challenges of Providing Services to Children with Autism Spectrum Disorder

December 8, 2008Washington, DC

Lee Grossman | President and CEO

The Autism Community is 10s of Millions Large

GROWING and affecting all in our society

Autism FactsAutism Facts• 1 in 150150 births…

• Over 1 to 1.51 to 1.5 million Americans…

• Approximately 12.5-1712.5-17 million family members

• Fastest-growing developmental disability -- rate10 - 17 %10 - 17 %

• Growth comparison during the 1990s

• U.S. population increase: 13%13%

• Disabilities increase: 28.4%28.4%

• Autism increase: 1,354 %1,354 %

• US $90$90 billionbillion 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$200-400 billionbillion

Autism is an epidemic

0100020003000400050006000700080009000

10000

92-93

94-95

96-97

98-99

00-01

02-03

04-05

06-07

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

A tidal wave is A tidal wave is coming…coming…

Autism FactsAutism Facts• 1 in 150150 births…

• Over 1 to 1.51 to 1.5 million Americans…

• Approximately 12.5-1712.5-17 million family members

• Fastest-growing developmental disability -- rate10 - 17 %10 - 17 %

• Growth comparison during the 1990s

• U.S. population increase: 13%13%

• Disabilities increase: 28.4%28.4%

• Autism increase: 1,354 %1,354 %

• US $90$90 billionbillion 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$200-400 billionbillion

Autism is a social, economic and health crisis

Autism is a social, economic and health crisis

Autism is a National Emergency

Autism is an epidemic

Autism is an

EPIDEMIC

Autism is:

Autism is:

Genetically based, neurological condition

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

The Realities of AutismThe 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

Autism is an epidemicA Dramatic, Proactive,

Aggressive and Coordinated Response from Multiple Federal

Agencies

Autism is a social, economic and health crisisFederal 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

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

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

Autism is a social, economic and health crisis

Autism Spectrum Disorder Services Roadmap

http://www.nimh.nih.gov/autismiacc/asdroadmap.pdf

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.

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

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.

IACC Services Subcommittee

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

The Realities of AutismExpanding 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

State Activities

• State Agency Task Forces• Private Insurance legislation• Teacher training and

supports• Medicaid waivers• First responders training

Human RightsWhere We Need To BeExpansion of C.A.R.E.Treating the Medical Aspects of AutismEnvironmental Concerns and NeurotoxicologyAdult Issues being AddressedPsychosocial and Behavioral InterventionsContinued and Growing AwarenessFocus on Services and InterventionsThe Autism Community Coming Together

Estimated Number of Individuals with Autism in Selected Asian

Nations and the U.S., 2007COUNTRY

China

NUMBER

2,500,000DATA SOURCEUniversity of Beijing estimate – working with Johns Hopkins to get a better number

India 2,000,000Reports from parent groups not confirmed by government (number attempted to be verified by ASA)

United States 1,200,000 Centers for Disease Control ADDME Study 2007

Indonesia 350,000Estimated by Health Minister of Indonesia

Japan 300,000Widely reported to have the highest rate of autism in the world

Philippines 250,000Estimate by the Autism Society of the Philippines – a reliable source

Vietnam 200,000Unreliable number

Thailand 180,000Estimate of the Minister of Mental Health

The Environment

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

The Environment

Factors contributing to climate change and global warming are also the same factors contributing to the

rise in Autism

Human RightsHuman 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

Human Rights DeclarationThe 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.

HOPE

Treatment Guided Research InitiativeTreatment Guided Research Initiative

(TGRI)• Identifying environmental

contributors

• Providing pragmatic solutions

• Developing the identification of final common pathways, injury interventions and improvement

TGRI

When treating, do no harm

To not treat may be doing the GREATEST HARM

Whole Body Condition

PredictionPreventionReversal

AdvocacyDelivering on Our Message of Hope

• Environment

• Human Rights

• Whole Body Medical Condition

• Treatment Guided Research

• Lifespan Services

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

Improving …Improving the Quality

of Life

Creating

Opportunities

Maximizing Potential

The GoalThe Goal

Autism, in the next generation, will

become an accepted part of the human

condition

Mission

Improving the lives of all those

affected by Autism

ASAAutism Society of

America

www.autism-society.org