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ASAN expresses concern regarding new HHS report on autism research | Autistic Self Advocacy Network
New report uses “creative accounting” to reflect increase in services-research; confirms persistent under-representation of adult needs
Also, respond to the related ASAN ACTION ALERT: Tell HHS to Stop “Creative Accounting” with Autism Research
[A sample of the pre-written Action Alert provided by ASAN at their link. At the end of this post.]
Washington, DC – July, 10th, 2012 – This morning, the Office of Autism Research Coordination (OARC) within the federal Department of Health and Human Services (HHS) released a new report analyzing the allocation of autism research funds in the public and private sector. The Autistic Self Advocacy Network, the leading national advocacy organization run by and for adults on the autism spectrum, issued a statement expressing concern regarding the low percentage of funds allocated to the needs of adults and a change in reporting methodology utilized to report a dramatic growth in the percentage of funding reported to service-provision research, despite a lack of comparable real funding increases in this area.
“This report confirms that the national autism research agenda is dangerously out of step with the priorities of Autistic people and our families,” said Ari Ne’eman, President of the Autistic Self Advocacy Network and outgoing member of the Inter-Agency Autism Coordinating Committee (IACC), “Furthermore, the report’s increase from 3% to 16% in the percentage of funding allocated to services-research is almost entirely attributable to OARC’s choice to count pre-existing funding streams around practitioner training as research. This kind of creative accounting presents the impression of research progress where little exists.”
The new report – the 2010 IACC ASD Research Portfolio Analysis – found $408 million was spent across 1,367 autism research projects in 2010.
Read the full ASAN Statement...
@HHSGov Take steps to balance the #autism #research agenda http://autisticadvocacy.org/2012/07/action-alert-tell-hhs-to-balance-the-autism-research-agenda/ @NIMHgov @autselfadvocacy #funding #autistic #adults @EnjoyHi5Autism
[sample of our ASAN Action Alert signing... Dear Secretary Sebelius and Drs. Insel and Daniels:
I am the Parent of a child living on the Autism Spectrum. Once I became aware of my son's diagnosis I decided to embark on understanding and acceting Autism. I am no longer crying, but, advocating through our personal 'EnjoyHi5Autism' blogs, social networks, action alerts, groups, etc... As a Developmental Disabilities Advocate, I stay abreast to issues relating to my son's autistic lifestyle. In light of this, the Autistic Self-Advocacy Network has brought to my attention concerns regarding the just released Office of Autism Research Coordination (OARC) 2010 IACC Research Portfolio Analysis, an annual responsibility of the federal government under Public Law 112-32, and National Istitute of Mental Health's broader autism research funding agenda . On July 10th, the Office of Autism Research Coordination released a new report analyzing the proportion of the autism research agenda going towards each of the IACC's seven Strategic Plan questions. At first glance, the 2010 research portfolio shows significant improvement in the area of services research, reporting that in 2010 sixteen percent of the autism research agenda went to services, a significant improvement from the three percent reported in 2009. However, upon further scrutiny, this improvement is the result of a change in recording, not real progress in the critical area of services. For the first time, OARC chose to count training programs within the Department of Education and the Health Resources and Services Administration (HRSA) as research. These programs are longstanding and have never before been considered "research" activities. Furthermore, they lack any of the traditional characteristics of research - such as the investigation of research questions, the use of the scientific method or the application of the ethical protections of the Institutional Review Board process.
OARC's sudden decision to reclassify a broad scope of training programs as services research has made it impossible to use the IACC Research Portfolio Analysis as a comparative tool to measure progress in allocating research funds from year to year. Almost three-fourths of the services research allocation altogether and the vast majority of the increase in services research reported between 2009 and 2010 comes from "practitioner training" programs that have long existed and never before been classified as research. Furthermore, as the two percent of research funding allocated towards adult research needs shows, the autism research agenda remains profoundly imbalanced. These problems require meaningful change, not simply different ways of calculating the status quo.
We urge HHS to undertake efforts to increase the percentage of research funding going towards the needs of adults and improving the quality of services research across the lifespan. The existing inequities in the autism research agenda show a profound under-representation of research that prioritizes the needs of those of us living on the autism spectrum today. Furthermore, we urge OARC to alter the IACC's 2010 Research Portfolio Analysis to reverse the unprecedented step of counting practitioner training programs as research and make the Research Portfolio Analysis comparable from year to year. Such steps are critical towards ensuring that children and adults on the autism spectrum and family members can work with our allies in the professional and policymaking communities towards real progress. ]