By Kelli Ann Davis
Last Wednesday, the White House held a special disabilities briefing with the CEOs from 75 non-profit organizations which included Mark Roithmayr, president of Autism Speaks. When I found out about the meeting on Friday, I immediately made several calls to top White House officials in an effort to set-up a private meeting between us since we were not invited to this important briefing. Within a few hours of my calls, I received an e-mail asking me to submit a “list” outlining key “issues to discuss” in response to my request.
In December, Generation Rescue submitted several “high priority issues” to the Transition Team (thanks to Julie O. for helping me comprise the original list) but now, I’d like to expand and refine the list and I’m asking for input from the community to help me do this.
Please feel free to add your own “high priority issue(s)” which you think the White House should address and/or comment on any of the current issues already listed below:
A National ASD Strategy, developed by a panel of experts on ASD approved by the stakeholders, will identify targeted outcomes, establish measurable goals and timelines, and create accountability for ASD research.We recommend within the first 100 days the President appoints this panel with the purpose of developing a National ASD Strategy that communicates a sense of urgency reflecting the alarming increase and prevalence of ASD, and declare autism a national health emergency.
Establish A National Institute of Autism (NIA):
Currently, autism research is fragmented among at least 5 institutes within the National Institutes of Health (NIH).
We recommend the President issue a directive to the Secretary of Health and Human Services (HHS) calling for the establishment of a National Institute of Autism not only to eliminate the fragmentation, but more important, to serve as a central location from which the planning, management and coordination of all ASD research stems. This 28th Institute under NIH would significantly enhance the effort to identify and prevent Autism Spectrum Disorders at their earliest stages and foster the research of innovative treatment interventions to help reduce their impact.
Appoint Federal ASD Coordinator to Oversee All Federal ASD Efforts:
By establishing one top-level point person to coordinate ASD efforts in the White House, we will ensure that ASD receives the recognition and priority it deserves in the federal government.
We recommend this person be representative of the ASD community as a whole, committed to independently advocating on behalf of those affected.
Fully Fund the Combating Autism Act and Federal Autism Research Initiatives:
Since the bill has been enacted, federal funding for ASD has not increased to the levels authorized by the Combating Autism Act (CAA). The CAA authorized $645 million for NIH research over five years, but the plan falls short by close to $200 million.
We recommend the immediate funding of the CAA in its entirety in order to more urgently and effectively develop treatment and discover cause.
Establish an Autism Advisory Board (AAB):
As outlined in the report language of the Combating Autism Act, as well as in a letter from the Science and Technology Committee on July 14, 2008, an Autism Advisory Board should be established to better serve the interests of those affected by autism.
Recommendation for such a board accompanied the bill in the form of a House Statement made by Congressman Joseph Barton, then Chairman of the House Energy and Commerce Committee, stating, “The Secretary may also provide other formal mechanisms, such as an Autism Advisory Board, to provide public feedback and interaction with the IACC. Further, the Secretary may opt to provide such a mechanism under existing statutory authority, without the recommendation of the IACC.”
We recommend the President issue a directive to the Secretary of HHS to establish an AAB, with input and participation from the public.
We further recommend the AAB be comprised of qualified public (non-government) representatives, equally divided among community stakeholders, clinicians and researchers. This board will provide much-needed stakeholder feedback, guiding the autism strategic plan to find cause(s) and treatments to help the most persons with autism in the fastest way possible.
Support Special Needs Education for Children with ASD:
Barack Obama and Joe Biden have pledged to work to change IDEA’s definition of “autism” to Autism Spectrum Disorders to ensure that all children diagnosed with ASD disorders receive the support they need.
Unfortunately, abusive behavior towards ASD children within the school system is becoming more wide-spread; a combination of poor training, lack of supervision and undefined standards, has placed many children in harms way.
We recommend each school district have an Autism Compliance Office which will coordinate and ensure the following: staff training; a Behavioral Intervention Plan (BIP) for every child; and strict monitoring on the use of punishment (time-out rooms and restraints) with severe penalties and/or convictions for any violations of the BIP.
Furthermore, school districts who fail to incorporate an Autism Compliance Office should be subject to a loss of federal funds.
Thanks for your help and I’ll keep you posted.
Kelli Ann Davis is the D.C. Political Liaison for Generation Rescue