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Combating Autism Reauthorization Act

3 Jun

House bill 2005 is now online. As you will see, it is a very brief bill, making modifications to the original Combating Autism Act.

A BILL

To reauthorize the Combating Autism Act of 2006.

Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

This Act may be cited as the `Combating Autism Reauthorization Act of 2011′.

SEC. 2. DEVELOPMENTAL DISABILITIES SURVEILLANCE AND RESEARCH PROGRAM.

Part R of title III of the Public Health Service Act (42 U.S.C. 280i et seq.) is amended–

(1) in section 399AA(e), by striking `2011′ and inserting `2014′;

(2) in section 399BB(g), by striking `2011′ and inserting `2014′;

(3) in section 399CC(f), by striking `2011′ and inserting `2014′; and

(4) in section 399DD–

(A) in subsection (a), by striking `Not later than 4 years after the date of enactment of the Combating Autism Act of 2006′ and inserting `Not later than 2 years after the date of enactment of the Combating Autism Reauthorization Act of 2011′; and

(B) in subsection (b), in paragraphs (4) and (5), by striking `the 4-year period beginning on the date of enactment of this Act’ and inserting `the 6-year period beginning on the date of enactment of the Combating Autism Act of 2006′.

SEC. 3. AUTHORIZATION OF APPROPRIATIONS.

Section 399EE of the Public Health Service Act (42 U.S.C. 280i-4) is amended to read as follows:

`SEC. 399EE. AUTHORIZATION OF APPROPRIATIONS.

`(a) Developmental Disabilities Surveillance and Research Program- To carry out section 399AA, there is authorized to be appropriated $22,000,000 for each of fiscal years 2012 through 2014.

`(b) Autism Education, Early Detection, and Intervention- To carry out section 399BB, there is authorized to be appropriated $48,000,000 for each of fiscal years 2011 through 2014.

`(c) Interagency Autism Coordinating Committee; Certain Other Programs- To carry out sections 399CC, 404H, and 409C, there is authorized to be appropriated $161,000,000 for each of fiscal years 2011 through 2014.’.

END

ASAN: Tell Congress “No” to Three More Years of the Same On Autism Policy

29 May

The Combating Autism Re-authorization Act (CARA) has been started in the U.S. legislature. The Autistic Self-Advocacy Network (ASAN) has issued a position statement on the bill:

Today, Senators Menendez and Enzi will be introducing legislation extending the Combating Autism Act for three more years. The Combating Autism Act was passed in 2005 without the involvement or consultation of a single Autistic person, let alone the broader self-advocate community. Without legislative action by Congress, the Act would expire on September 30th of this year. While we respect the Senators’ good intentions, the Menendez-Enzi legislation would freeze in place the current flawed CAA programs, which fail to make any provision for services, do not incorporate anything about adults on the autism spectrum and exclude self-advocates. As a result, ASAN opposes any long term re-authorization of CAA without badly needed investments in services and vital program reforms to ensure self-advocates are involved at every level. We’re urging you to call your Senators and tell them to OPPOSE the Menendez-Enzi re-authorization legislation as too long an extension without any of the needed reforms. You can reach them through the Capital Switchboard at (202) 224-3121 by giving your state and asking to be put through to your Senator. Making the call and urging their opposition is important even if you don’t feel comfortable having a longer conversation, but if you want to provide additional reasons to oppose this extension we have provided several below:

A three year extension of the existing Combating Autism Act means a three year delay before Congress takes any meaningful action on services for Autistic people across the lifespan. It means three years before any new supports for adults on the autism spectrum are introduced and three years before any of the problems with the status quo are fixed. We can’t afford to wait that long.

CAA’s existing programs enable a severe bias in the autism research agenda against services and adult issues. According to the recently released IACC Research Portfolio, less than one percent of autism research dollars spent in 2009 went to research relating to adults while only three percent went to research about improving services, supports and education! This inequity calls out for change.

CAA’s existing structure excludes the very people who should be at the center of the autism conversation: Autistic people ourselves. By locking in place for another three years a bill that was passed without the involvement of self-advocates, Congress would be sending a message that the needs and perspectives of Autistic adults don’t matter.

Any long term extension of CAA must involve additional investments in services, greater inclusion of self-advocates in every program and more respectful language shifting from “combating autism” to supporting Autistic people. Call Congress today at (202) 224-3121! Remember to call twice in order to reach both of your Senators. If for accessibility reasons, you need to e-mail your Senators instead you can find their e-mails on the Senate website at this link.

We need your help to remind Congress they can’t ignore the voices of the Autistic community. As always, Nothing About Us, Without Us!

Regards,

The Autistic Self Advocacy Network

ASF Strongly Supports Combating Autism Reauthorization Act of 2011

27 May

The Combating Autism Act (CAA) “sunsets” this September. That means that the mandate to focus the U.S. government’s research efforts will end. This doesn’t mean that autism research will stop being funded, but it means that the IACC will end, and a commitment to specific funding levels will sunset.

Here is a statement by the Autism Science Foundation on the re-authorization of the CAA:

The Autism Science Foundation (ASF) strongly supports the Combating Autism Reauthorization Act of 2011 (CARA) introduced today by Senator Robert Menendez (D-NJ) and Senator Mike Enzi (R-WY) in the United States Senate and by Rep. Chris Smith (R-NJ) and Rep. Mike Doyle (D-PA) in the United States House of Representatives.

The new bill reauthorizes the Combating Autism Act of 2006 (CAA), which has played a critical role in advancing autism research and treatment. The original CAA, set to sunset on September 30, 2011, expanded federal investment for autism research through NIH, increased services, diagnosis and treatment through HRSA, and enhanced surveillance and awareness efforts by the CDC. The CAA authorized nearly $1 billion in federal research spending over five years—increasing autism research spending by almost 50 percent. This research has led to improved understanding of the causes of autism and has helped us begin to develop new interventions. Additionally, the research funded through CAA has increased the ability of professionals to more properly screen, diagnose, and treat individuals with autism. The Combating Autism Reauthorization Act of 2011 ensures that the programs established under the original law continue for an additional three years, including CDC surveillance programs, HRSA intervention and training programs, and the Interagency Autism Coordinating Committee (IACC).

The Autism Science Foundation strongly supports this new legislation and urges all members of Congress to act swiftly to pass it into law. We thank Senator Menendez, Senator Enzi, Congressman Doyle and Congressman Smith for their continued focus on the needs of individuals with autism and their families. We look forward to continuing to work with them and the broader autism community to ensure passage of this important legislation. At an IACC meeting earlier this year, the Obama administration pledged to support CARA and to sign the bill into law upon passage.

The Autism Science Foundation is 501(c)3 public charity. Its mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

Invitation to Upcoming Seminar on Autism Treatment April 21, 2011 – Open to the Public and Available by Webcast

19 Apr

Below is the announcement from the Office of Autism Research Coordination (OARC). This meeting will be in only a couple of days:

The Office of Autism Research Coordination (OARC), NIMH is pleased to be co-sponsoring the National Institute of Mental Health (NIMH) Autism Awareness Month Seminar: “Advances in Treatment Research.” This event is open to the public, both in-person and by webcast.

The seminar will feature presentations by Dr. Susan Swedo and Dr. Rebecca Landa about their research on innovative drug and behavioral treatments for autism spectrum disorder. For speaker biosketches, please see below.

EVENT DETAILS

Date: Thursday, April 21, 2011

Time: 10:30-11:30 am ET

Location: The Neuroscience Center
Conference Room C
6001 Executive Boulevard
Rockville, Maryland 20852

Webcast Live: http://videocast.nih.gov/summary.asp?live=10144

For in-person attendees, seating is on a first come, first served basis. The event will also be videocast live and archived through NIH Videocast: http://videocast.nih.gov/summary.asp?live=10144 for remote access.

Individuals with disabilities who need Sign Language Interpreters and/or reasonable accommodation to participate in this event should contact Christine Kaucher, Kaucherc@mail.nih.gov, 301-443-4058, and/or the Federal Relay (1-800-877-8339).

Please send questions about this event to nimhpress@mail.nih.gov. We look forward to your participation on April 21st!

SPEAKER BIOSKETCHES

Susan Swedo, M.D.

Dr. Susan Swedo is Chief of the Pediatrics & Developmental Neuropsychiatry Branch, NIMH. She is a board-certified pediatrician, who trained at Northwestern University’s Children’s Memorial Hospital in Chicago, Illinois. Dr. Swedo has authored/co-authored over 100 research publications since joining the NIMH in 1986. Her research has focused on diagnosis and treatment of childhood neuropsychiatric conditions, including Sydenham’s chorea, Tourette Syndrome, Obsessive-Compulsive Disorder (OCD), and autism spectrum disorders. Dr. Swedo and colleagues were the first to describe a post-infectious etiology for OCD and define criteria identifying the PANDAS subgroup (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections). Current research efforts are directed at identifying biological causes for behavioral syndromes and developing new and more effective therapies. Dr. Swedo received her B.A. degree from Augustana College in 1977 and her M.D. from Southern Illinois University in 1980.

Rebecca Landa, Ph.D., CCC-SLP

Dr. Rebecca Landa is the founder and director of Kennedy Krieger’s Center for Autism and Related Disorders. She is an associate Professor of Psychiatry in the Johns Hopkins University School of Medicine. Dr. Landa obtained her master’s degree at the Pennsylvania State University and her doctorate at the University of Washington. She completed post-doctoral training in Psychiatric Genetics at Johns Hopkins. She is the recipient of the NIMH Shannon Award for excellent and innovative research, as well as the Rita Rudel Prize for Developmental Neuropsychology. Dr. Landa is the recipient of the 2009 Alumni Recognition Award from the College of Human Health and Development of the Pennsylvania State University.

Dr. Landa’s research has focused on neuropsychological, learning, and communication processes in autism across the lifespan. She was the principal investigator of an NIH STAART Center of Excellence, through which she developed and defined the evidence-base for the Early Achievements intervention for toddlers with autism spectrum disorders. She has pioneered research aimed at identifying the earliest signs of autism through the study of infant siblings of children with autism. Dr. Landa is the author of the Pragmatic Rating Scale, used internationally in autism-related research and clinical practice. Her current research focus is on learning processes in autism, as well as early detection of and intervention for autism spectrum disorders (ASD).

Save the Date: Joint Meeting of the IACC Subcommittee on Safety and Services Subcommittees – May 19, 2011

19 Apr

Next month the Interagency Autism Coordinating Committee will be hosting a joint meeting of the Safety and Services subcommittees. The subject will be seclusion and restraints. The announcement is below:

Save the Date: Joint Meeting of Interagency Autism Coordinating Committee (IACC) Subcommittee on Safety and IACC Services Subcommittee

Please join us for a in-person joint meeting of the IACC Subcommittee on Safety and the IACC Services Subcommittee to discuss issues related to seclusion and restraint and autism spectrum disorder (ASD). The meeting will take place on Thursday, May 19, 2011 from 10:00 a.m. to 4:00 p.m. ET. The meeting will also be available for public access by conference call and live webcast.

Meeting location:
Bethesda North Marriott Hotel and Conference Center
5701 Marinelli Road
Bethesda, MD 20852

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered.

The meeting will also be accessible by conference call and live webcast. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

Conference Call Access
USA/Canada Phone Number: 888-577-8995
Access code: 1991506

Webcast: http://videocast.nih.gov

If you experience any technical problems with the conference call or webcast, please e-mail IACCTechSupport@acclaroresearch.com or call the IACC Technical Support Help Line at 443-680-0098.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda and information about other upcoming IACC events.

Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20852
Phone: 301-443-6040
IACCpublicinquiries@mail.nih.gov

The IACC’s commitment to environmental causation research

14 Apr

The Interagency Autism Coordinating Committee (IACC) met on Monday. I was unable to listen to much of it, although I did get to hear most of the presentation by Joseph Piven. His talk was about the Infant Brain Imaging Study:

Infant Brain Imaging Study (IBIS) Network

Joseph Piven, M.D.
Sarah Graham Kenan Professor of Psychiatry, Pediatrics, and Psychology
Director, Carolina Institute for Developmental Disabilities
Director, Neurodevelopmental Disorders Research Center
University of North Carolina at Chapel Hill

There are some very interesting results coming out on onset of brain overgrowth and timing of onset of autistic symptoms.

There was also, as you might imagine from the title of this post, some reference to environmental causation research. As in, promoting the notion that the IACC hasn’t and doesn’t support environmental causation research. This is far from the truth. Strangely, one doesn’t find news on the research going into environmental causation on the blogs which focus upon environmental causation. One can find it here, though. For example:

US plan for autism research: focus on environmental causation re-emphasized

US proposes $154M in new autism research projects

IACC meeting on Monday…or not

8 Apr

The IACC has a meeting scheduled for Monday. But, if the US Government shuts down due to budget negotiations, it won’t happen. A great example of good work being sacrificed for politics. I don’t

Reminder: Interagency Autism Coordinating Committee (IACC) Full Committee Meeting

PLEASE NOTE THAT IN THE CASE OF A GOVERNMENT CLOSURE, THIS MEETING WILL NOT TAKE PLACE AND WILL NEED TO BE RESCHEDULED

Please join us for an IACC Full Committee meeting that will take place on Monday, April 11, 2011 from 9:00 a.m. to 5:00 p.m. ET in Washington, DC. Onsite registration will begin at 8:00a.m.

Agenda: The meeting will feature special presentations and activities to celebrate HHS Autism Awareness Month. The IACC will also discuss committee business items including the 2010 Summary of Advances and the 2009 Portfolio Analysis. The agenda is posted at: http://iacc.hhs.gov/events/2011/full-committee-mtg-agenda-April11.shtml.

Meeting location:
The Ronald Reagan Building and International Trade Center
1300 Pennsylvania Avenue, NW
The Polaris Room
Washington, DC 20004

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered.

The meeting will be remotely accessible by videocast (http://videocast.nih.gov/) and conference call. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

Conference Call Access
USA/Canada Phone Number: 888-577-8995

Access code: 1991506

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least seven days prior to the meeting. If you experience any technical problems with the webcast or conference call, please e-mail IACCTechSupport@acclaroresearch.com or call the IACC Technical Support Help Line at 443-680-0098.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda, materials and information about other upcoming IACC events.

Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov

Release of the IACC Summary of Advances in ASD Research and Updates on Autism Awareness Month Activities

1 Apr

Below is a copy of the email the IACC sent out today with research advances and updates on Autism Awareness Month activities.

The Interagency Autism Coordinating Committee and Office of Autism Research Coordination are pleased to announce that the 2010 IACC Summary of Advances in Autism Spectrum Disorder Research was released and posted to the IACC website today in conjunction with Department of Health and Human Services celebration of “National Autism Awareness Month” and the United Nations designated “World Autism Awareness Day” on April 2, 2011. The 2010 IACC Summary of Advances is a collection of brief summaries covering the twenty research findings and associated publications that the IACC felt made the most significant contributions to autism biomedical and services research in 2010.

Please feel free to visit the pages below for more information on the IACC Summary of Advances and National Autism Awareness Month activities.

IACC and Department of Health and Human Services information:

-IACC Home Page: http://iacc.hhs.gov/

-IACC News Update on Release of the 2010 Summary of Advances

The 2010 IACC Summary of Advances in ASD Research

-Blog: IACC Chairman, Dr. Thomas Insel, highlights recent progress in honor of National Autism Awareness Month

-Department of Health and Human Services Secretary Kathleen Sebelius’ Statement on National Autism Awareness Month

-Department of Health and Services homepage spotlights Autism Awareness Month: http://www.hhs.gov/

Release of the Department of Health and Human Services’ Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 (FY 2006-FY 2009)

-Centers for Disease Control and Prevention (CDC) Announcement for Autism Awareness Month

Upcoming IACC Full Committee Meeting April 11, 2011, featuring special presentations in recognition of National Autism Awareness Month

Additional Autism Awareness information:

United Nations’ Secretary-General Ban Ki-moon’s Statement Regarding World Autism Awareness Day

We wish everyone the best as we reflect this month on the significance of our work together to improve the lives of people with autism and their families.

Sincerely,

The Office of Autism Research Coordination

Interagency Autism Coordinating Committee (IACC) Services Subcommittee: meeting about to start

29 Mar

The Interagency Autism Coordinating Committee (IACC) Services Subcommittee is about to hold a meeting. You can listen in via phone or by webcast. Instructions are below.

Interagency Autism Coordinating Committee (IACC) Services Subcommittee

Please join us for an in-person meeting of the IACC Services Subcommittee that will take place on Tuesday, March 29, 2011 from 2:00 p.m. to 4:30 p.m. ET.

Agenda: The subcommittee plans to discuss issues related to services and supports for individuals with autism spectrum disorder (ASD) and their families.

Meeting location:
The Neuroscience Center (NSC)
6001 Executive Boulevard, Room 8120
Rockville, MD 20852

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered.

The meeting will also be accessible by conference call and webinar. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

Conference Call Access
USA/Canada Phone Number: 888-456-0356
Access code: 1427016

If you experience any technical problems with the conference call, please e-mail IACCTechSupport@acclaroresearch.com or call the IACC Technical Support Help Line at 443-680-0098.

Webinar Access: https://www2.gotomeeting.com/register/169578426

If you experience any technical problems with the web presentation tool, please contact GoToWebinar at (800) 263-6317.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda and information about other upcoming IACC events.

Contact Person for this meeting is:
Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20852
Phone: 301-443-6040
IACCpublicinquiries@mail.nih.gov

2011 IACC Strategic Plan Includes New Focus on Interventions for Nonverbal People with ASD, Health Promotion Efforts, and Safety

1 Mar

IACC news alerts come out periodically. You can check the archive and/or sign up for the emails. The 2011 Strategic Plan came out yesterday. Coincident with that was a news announcement:

2011 IACC Strategic Plan Includes New Focus on Interventions for Nonverbal People with ASD, Health Promotion Efforts, and Safety

The Interagency Autism Coordinating Committee (IACC) has released its 2011 Strategic Plan for Autism Spectrum Disorder (ASD) Research, which is intended to provide a blueprint for future ASD research efforts. The Plan provides a set of research recommendations to guide federal autism research efforts and serves as a basis for partnerships with other agencies and private organizations involved in ASD research and services.

“Federal and private investment in autism research has increased markedly in the past two years,” said IACC Chairman and NIMH Director Dr. Thomas Insel. “At the same time, the IACC has heard from the community about the growing need for research and the importance of new areas for rigorous scientific study. This updated research Strategic Plan builds on recent discoveries and emerging opportunities to identify new areas where science can make a difference for individuals and families with ASD.”

Several new areas of focus have been identified in the 2011 Plan, including studies on the use and accessibility of Alternative and Augmentative Communication (AAC) tools for nonverbal individuals on the spectrum and studies of health promotion and the prevention of related health concerns such as obesity and mental health issues. In addition, in response to public concerns about the health and safety of children and adults with autism, the committee added new objectives related to understanding safety issues that may contribute to the increased risk of injury and premature death that has been reported in the literature.

In total, the IACC added 16 new objectives to the Plan during the update and added an addendum section to each chapter describing what has been learned over the past year, what gap areas have emerged, and what progress has been made in fulfilling the existing objectives. During the annual update of the Plan, which is required under the Combating Autism Act of 2006, the IACC considered input from ASD community, advocacy groups, research funding organizations, and the scientific community. Also incorporated was information from the IACC Portfolio Analysis of ASD Research Funding in 2009 (the most recent year for which there was complete funding data), the 2010 IACC Summary of Advances in ASD Research, the Request for Information (RFI) on the 2010 Plan, and the proceedings of the IACC Services Workshop held in November 2010.

In developing the 2011 Plan, the committee highlighted many successful collaborations that have been recently formed among member agencies and organizations. These collaborations included a joint conference held by the National Institute of Environmental Health Sciences (NIEHS) and Autism Speaks on autism and the environment; an information portal called AutismNOW supported by the Administration for Children and Families (ACF), in partnership with the Autistic Self-Advocacy Network (ASAN) and the Autism Society; and the Autism Informatics Consortium, which is designed to improve the utility and usability of informatics tools for ASD researchers and represents a collaboration between NIH, Autism Speaks, and the Simons Foundation. These public-private partnerships embody the spirit of collaboration described in the Plan’s Mission Statement and are critical to making progress toward understanding ASD and improving the lives of people on the spectrum, as well as those of their families.

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