autism research

$1.5 billion dollars has been spent on autism research since 2008. A mere 1.3% of all funding – less than $20 million dollars – has been spent on the question: What does the future hold, particularly for adults? This is simply unacceptable.

As the acting National Coordinator for the Coalition for Community Choice, a national collaboration of people advocating for more housing choices of those with intellectual and developmental disabilities, Desiree Kameka attended the full committee meeting of Interagency Autism Coordinating Committee (IACC) to present a public comment (see video below) focused on the need for research in housing options. IACC is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorders (ASD). Unfortunately, neither of the federal appointees whose job focuses on adult issues, Sharon Lewis or John P. O’Brian, were present to hear the voices of those they serve.

A draft of the IACC 2013 Strategic Plan was available at the meeting that describes the IACC Strategic Plan Objectives and how much funding projects were given to the seven elements of the strategic plan. The question above regarding the future is #6, yet has received extremely limited funding and number of projects compared with the other questions. Of 5,595 autism-related research projects funded, only 119 looked at the future of adults with autism, a mere 2% of all autism research.

Our message is urgent: we need more research into the quality of supports and policy that will affect the future for those on the autism spectrum as well as others with I/DD! [Full transcript CCC Public Comment for IACC, April 2014] Watch the video below to see Madison House Autism Foundation’s Housing Director, Desiree Kameka, give public comments at the meeting.


About the Author

Desiree Kameka, Director of Housing

Desiree is the project lead for the Autism Housing Network. Her work for the Madison House Autism Foundation focuses on researching housing issues, advocating on issues of autism in adulthood, and presenting her work at local and national gatherings. She visits residential communities and social enterprises across the USA and highlights their unique victories and learning curves while sharing stories of individuals on the spectrum or who have other developmental disabilities. Her passion is empowering autistic adults and parents to create a future that is exciting and life affirming by offering small group consultations for forming projects.