Welcome to today’s AIR-P/ATN Advances in Autism …asatn.org/system/files/news-documents/AIRP...

This research activity was supported by a cooperative agreement UA3 MC11054 through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital. This work was conducted through the Autism Speaks

Autism Treatment Network serving as the Autism Intervention Research Network on Physical Health.

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The Interagency Autism

Coordinating Committee

Susan A. Daniels, Ph.D.

Director, Office of Autism Research Coordination

National Institute of Mental Health

National Institutes of Health

Executive Secretary, Interagency Autism Coordinating Committee

December 16, 2014

These slides do not reflect decisions of the IACC and are for discussion purposes only.


The Office of Autism Research Coordination

• OARC/NIMH coordinates and manages the Interagency Autism

Coordinating Committee (IACC) and related cross-agency autism

spectrum disorder (ASD) activities, programs, and policies.

• OARC provides assistance to the IACC by:

o Communicating information about the IACC and federal ASD

research activities to Congress, other government agencies, and

the public

o Coordinating cross agency efforts

o Planning meetings, conferences, and other venues for interaction

between the IACC and the public

o Assisting the IACC in its strategic planning and ASD research

monitoring activities

o Conducting analyses and preparing reports for the IACC and

Congress

o Gathering public input on issues related to ASD to inform the

committee's work

o Developing and disseminating information about ASD to the public

Interagency Autism Coordinating Committee

Legislative Background

• Children’s Health Act of 2000

Established IACC to coordinate activities within HHS, including NIH and CDC

Membership included other federal agencies and parents of individuals with ASD

• Combating Autism Act of 2006:

Reconstituted Interagency Autism Coordinating Committee to:

Enhance Federal coordination of autism efforts

Provide priorities and accelerate the pace of autism research

IACC Membership: Federal and Public members

Public members include self advocates, parents, family members, leaders, service providers, researchers and other stakeholders

• Combating Autism Reauthorization Act (CARA)

Renewed the IACC through 2014


Autism CARES Act of 2014

The Autism Collaboration, Accountability, Research,

Education and Support Act - Public Law 113-157,

enacted August 8, 2014: : Reauthorizes the IACC and other programs through

September 30, 2019

Establishes a National Autism Spectrum Disorder Initiative

within HHS, led by an official charged with implementation

of autism activities and ensuring that HHS activities are not

unnecessarily duplicative with those of other federal

Departments and agencies

Supports continued efforts of IACC to advance ASD

research

Incorporates increased focus on services into various

activities of the IACC (e.g., the IACC Strategic Plan)

Provides additional membership criteria

Incorporates a significant emphasis on the needs of adults

and transitioning youth services, requiring HHS to provide a

Report to Congress on this topic

What the IACC does:

• Coordinates and monitors federal and

non-federal activities (research and

services)

• Gathers public input

• Produces advisory documents that can

be used by federal agencies and others

• Advises the HHS Secretary; makes

recommendations

• Serves as a public forum for discussion

of issues related to ASD


What the IACC does NOT do:

• Does not fund research

• Does not “set” policy

• Does not have authority to force

agencies to fund specific

projects or set specific policies

The IACC’s role is to bring federal agencies and

public stakeholders together to coordinate and

focus efforts to accelerate progress.


How does the IACC operate?

• Required to hold meetings of the full committee

at least twice a year

• Meetings include presentations from experts

and community members, as well as public

comment

• Committee forms subcommittees and planning

groups to allow focused work on specific

projects

• All products produced by the committee must

be discussed and approved by the full

committee


Who serves on the IACC? IACC Membership 2012-2014

Federal Members

Thomas Insel, M.D. (NIMH, NIH)

James Battey, M.D., Ph.D. (NIDCD, NIH)

Linda Birnbaum, Ph.D. (NIEHS, NIH)

Coleen Boyle, Ph.D., M.S. Hyg. (CDC)

Francis Collins, M.D., Ph.D. (NIH)

Tiffany Farchione, M.D. (FDA)

Alan Guttmacher, M.D. (NICHD, NIH)

Laura Kavanagh, M.P.P. (HRSA)

Donna Kimbark, Ph.D. (DoD)

Walter Koroshetz , M.D. (NINDS, NIH)

John O’Brien, M.A. (CMS)

Linda Smith (Administration for Children

and Families)

Michael Yudin (Dept of Education)

Sharon Lewis (Administration for

Community Living)

Public Stakeholder Members

Idil Abdull (Parent, Somali American Autism Foundation)

James Ball, Ed.D., B.C.B.A.-D. (JB Autism Consulting)

Anshu Batra, M.D. (Parent & Developmental Pediatrician)

Noah Britton, M.A. (Self advocate)

Sally Burton-Hoyle, Ed.D. (Family member, Eastern Michigan University)

Matthew Carey, Ph.D. (Parent)

Wendy Chung, M.D., Ph.D. (Simons Foundation)

Jose Cordero, M.D. , M.P.H. (University of Puerto Rico)

Jan Crandy (Parent, Nevada State Autism

Assistance Program)

Geraldine Dawson, Ph.D. (Duke University)

David Mandell, Sc.D. (University of Pennsylvania)

Lyn Redwood, R.N., M.S.N. (Parent, Coalition for SafeMinds)

Robert Ring, Ph.D. (Autism Speaks)

Scott Michael Robertson, Ph.D. (Self advocate, Autistic Self Advocacy Network)

John Elder Robison (Self advocate & Author)

Alison Tepper Singer, M.B.A. (Parent, Autism Science Foundation)

IACC Core Values

• Sense of urgency

• Scientific excellence

• Spirit of cooperation

• Consumer focus

• Partnerships in action

• Accountability (SMART objectives –

specific, measurable, achievable,

realistic, time-bound)

“Finding common ground”

IACC Statutory Responsibilities

• Develop, annually update and submit to

Congress a strategic plan for ASD

research

• Develop and annually update a summary

of advances in ASD research

• Monitor Federal activities with respect to

ASD

• Make recommendations to the HHS

Secretary regarding research or public

participation

• Meet at least twice/year

• Under Autism CARES – adding services


The IACC Strategic Plan for ASD Research

Purpose:

• Focus, coordinate, and accelerate high quality research

• Answer the urgent questions – consumer focused

IACC Strategic Plan for ASD Research

Vision: The [IACC] Strategic Plan will accelerate and

inspire research that will profoundly improve the

health and well-being of every person on the autism

spectrum across the lifespan. The Plan will set the

standard for public-private coordination and

community engagement.

IACC Strategic Plan Introduction 2011


Research Questions Areas

Covered in the IACC Plan 1) Screening and Diagnosis: “When should I be

concerned?”

2) Underlying Biology: “How can I understand what is

happening?”

3) Causes and Risk Factors: “What caused this to happen

and can this be prevented?”

4) Treatments: “Which treatments and interventions will

help?”

5) Services: “Where can I turn for services?”

6) Lifespan Issues: “What does the future hold, particularly

for adults?”

7) Infrastructure, Data Sharing, & Surveillance: “What

other infrastructure and surveillance needs must be met?”

78 Research Objectives

2013 IACC Strategic Plan Update

Provides five-year update on progress

toward IACC Strategic Plan goals

Includes:

Portfolio analysis data for FY 2008-

2012

Funding allocated to each Objective

of the IACC Strategic Plan

Assessment of which objectives met,

partially met, or did not meet

recommended funding levels

Assessment of:

o Key research findings and

progress

o Remaining gaps in knowledge

o Emerging needs and

opportunities

o Progress toward aspirational

goals

These slides do not reflect decisions of the IACC

and are for discussion purposes only.


IACC Strategic Plan Planning Group Findings

• $1.5 billion expended by federal and private research agencies

and organizations from 2008-2012

• Advances were made in all 7 Strategic Plan question areas

(screening and diagnosis, biology, risk factors, interventions,

services, lifespan issues and infrastructure and surveillance

Examples of advances include:

• Improvements in screening and diagnosis approaches, enabling

diagnosis by age 24 months if fully utilized

• More data supporting the efficacy of early behavioral

interventions

• Data from baby sibs and other studies helping us better

understand the early development of ASD and its underlying

biology

• More knowledge regarding both genetic and environmental risk

factors

• New guidelines to help families and clinicians address

comorbid/co-occurring conditions in individuals with ASD

• More knowledge about services barriers and outcomes


Overarching Goals to Accelerate Progress

in the Next 5 Years

• Including individuals from the full range of ASD disability, all

periods of the lifespan, and underserved populations, in

research

• Moving from observational research (e.g., health disparities,

services) to research to develop strategies to address issues

• “Practice to research" - encouraging study of real-world

practices to inform research studies

• Scaling up screening tools, interventions, and services

approaches for use in community settings

• Developing a personalized medicine approach to intervention

and services, using genotypes, subtypes/phenotypes, and co-

morbid health conditions

• Applying strategies from other fields to ASD research

• Leveraging existing infrastructure to increase research speed

and efficiency

• Focusing research on practical outcomes, such effectiveness in

community settings and improvement in quality of life

• Developing standardized outcomes measures

2011-2012 IACC Portfolio Analysis

Assists the IACC in fulfilling the CAA requirement to monitor Federal activities related to Autism Spectrum Disorder (ASD)

Provides comprehensive analysis of the ASD research portfolio across both Federal agencies and private organizations

Informs the IACC and stakeholders about the funding landscape and current directions in ASD research

Overview of 5 years of research, with funding and project information from 2008-2012, to help the IACC monitor progress in fulfilling each objective of the IACC Strategic Plan

Highlights gaps and opportunities to guide future activities


Federal Funding $259,985,755

Private Funding $71,545,146

22%

2012 Federal and Private Autism Funding


Total funding = $331,530,901

21 funders included

Change since 2011 = + $32M

78%

Funding Agency/Organization Number of

Projects Total Funding

National Institutes of Health (NIH) 452 $190,598,854

Simons Foundation (SF) 247 $56,494,115

Department of Education (ED) 141 $29,478,108

Centers for Disease Control and Prevention (CDC) 27 $17,214,124

Autism Speaks (AS) 183 $12,724,103

Health Resources and Services Administration (HRSA) 30 $9,400,983

National Science Foundation (NSF) 44 $6,539,622 Department of Defense - Autism Research Program (DoD-

ARP) 76 $4,460,138

Department of Defense - Air Force (DoD-AF) 2 $903,888

Center for Autism and Related Disorders (CARD) 17 $583,940

Brain & Behavior Research Foundation (BBRF) 31 $569,427

Agency for Healthcare Research and Quality (AHRQ) 3 $490,038 Substance Abuse and Mental Health Services

Administration (SAMHSA) 1 $450,000

Autism Science Foundation (ASF) 12 $385,000

Administration for Community Living (ACL) 1 $350,000 Southwest Autism Research & Resource Center

(SARRC) 6 $300,000

Organization for Autism Research (OAR) 19 $273,182

Autism Research Institute (ARI) 14 $215,379

Administration for Children and Families (ACF) 1 $100,000

Centers for Medicare & Medicaid Services (CMS) 1 $0

Environmental Protection Agency (EPA) 1 $0

Grand Total 1,309 $331,530,901


2012 Federal and Private Autism Funders

Distribution of Funding Across the

IACC Strategic Plan Questions (All Funders)?

These slides do not reflect decisions of the IACC and

are for discussion purposes only.

2013 IACC Summary of

Advances

• Annual publication –

required by CAA

• Lay-friendly summaries

of the 20 most

significant advances in

ASD biomedical and

services research

selected by the IACC

• Covers:

• Prevalence

• Diagnosis

• Biology

• Risk factors

• Interventions

• Lifespan issues



IACC Statement on DSM-5

• IACC issued a statement regarding the implications

of changes in the ASD diagnostic criteria

• Addresses implications for:

– Research

– Practice and Policy

• Key points:

– Committee recommended research to further assess the

reliability and validity of the DSM-5 ASD criteria, and to

understand the potential impact of these new criteria on

diagnosis, prevalence estimates, and access to services.

"Services should be based on need rather than diagnosis; it

would not be appropriate for a child to be denied ASD-specific

services because he or she does not meet full DSM-5 criteria if

a qualified clinician or educator determines that the child

could benefit from those services."

• www.iacc.hhs.gov/news/press_releases/2014/pr_2014_dsm5.shtml


http://www.iacc.hhs.gov/news/press_releases/2014/pr_2014_dsm5.shtml

Letter to Secretary on Health Coverage

For Early Intervention

Sent March 25, 2013

Key points:

• In light of the strengthening evidence base for the

effectiveness of early interventions, the IACC recommends

support for coverage of and broad access to these

treatments for children diagnosed with ASD.

• Recommend availability of coverage of early behavioral

interventions for children who are insured through private

insurers as well as for those who are insured through

Medicaid.

• Response received July 2, 2013

Letter and response on the IACC website under “IACC Publications”


Combating Autism Act Report to Congress

(FY 2010- FY 2012)

• 100+ page report encompasses

information on autism-related

activities and programs

(research and services) of

agencies and offices within

HHS, Department of Education,

Environmental Protection

Agency, Department of Defense,

and National Science

Foundation

• Released in February, 2014 and

submitted to Congress per

CARA

• Available online at

www.iacc.hhs.gov



What’s next for the IACC?

• Previous committee’s terms expired on September 30, 2014

• Open Call for Nominations – opened October 1, 2014 and

closed on November 14, 2014

• ~100 public member nominations received

• Secretary will select new public members; reappoint federal

members to represent agencies

• New committee will be announced in 2015 and will begin

meeting

• New committee will be charged with:

o Updating the Strategic Plan, including adding new

information on services

o Continuing to monitoring federal activities, including both

research and services (“to the extent practicable”)


Susan Daniels, Ph.D., Director

Dawn Beraud, Ph.D., Policy Analyst

Emily Einstein, Ph.D., AAAS Science and Technology Policy Fellow

Nicole Jones, Senior Web Developer

Kipchumba Kitur, Operations Coordinator

Stephanie Mok, Policy Analyst

Lina Perez, Management Analyst

Thank you for attending today’s AIR-P/ATN Advances in Autism

Research & Care Webinar Series!

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Welcome to today’s AIR-P/ATN Advances in Autism …asatn.org/system/files/news-documents/AIRP...

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