Dear Senator Menendez, Rep. Smith and Rep. Doyle,
We, the undersigned organizations committed to advancing equality of opportunity for people with disabilities, write with regard to the upcoming re-authorization of the Combating Autism Act (CAA). As you consider re-authorizing CAA, we urge you to incorporate the need for substantive changes to reflect the priorities of autistic people and their families. Congress should make common-sense changes that will ensure that federal funds are better used to benefit the community that this legislation is designed to serve.
We are urging a re-alignment of CAA to reflect a greater emphasis on the needs of autistic adults and services as well as a more inclusive process that better represents the priorities of autistic people and their allies. As we outline below, a larger proportion of federal autism research funding should be used for the purposes of research on services and the needs of adults; autistic people should have greater representation on the Interagency Autism Coordinating Committee (IACC); the IACC should be reorganized so that it can better fulfill its mandate to create a unified strategic plan for autism research and programs; and the name of the legislation should be changed to emphasize support for, rather than antagonism toward, autistic people and their families.
Rebalance the Autism Research Agenda
Currently, only a small fraction of federal research funding focuses on effective delivery of services or on the needs of autistic adults, both of which are issues of pressing concern to autistic people and their families. In 2010, the most recent year in which data is available, the National Institutes of Health (NIH) allocated only 2.4% of its autism research funding toward services-related research and only 1.5% toward research on the needs of adults.
We recommend that the CAA be revised to redirect at least 25% of research funding now allocated to the National Institutes of Health to agencies that specialize in research on services and the needs of adults. The National Institute on Disability and Rehabilitation Research (NIDRR) and the Projects of National Significance (PNS) program within the Administration on Intellectual and Developmental Disabilities (AIDD) both have existing mechanisms to fund such research and have specific expertise in the needs of autistic adults, autistic children and the importance of services to improve the quality of life of autistic people across the lifespan. Alternately, Congress could require the NIH to allocate a specific percentage of autism research dollars to services and adult research.
It is crucial that Congress ensure that any additional focus on services and adults in the CAA reauthorization should be in the form of added support for research. Federal laws and regulations governing services delivery and ensuring the rights of individuals with disabilities, not the CAA, are the appropriate vehicle for addressing any necessary policy reforms. The CAA instead should promote research to develop and improve high-quality, scalable, and community-based approaches to services delivery.
Increase representation of services-oriented agencies and autistic adults on the Interagency Autism Coordinating Committee (IACC)
The Interagency Autism Coordinating Committee (IACC), established by the CAA, is tasked with monitoring federal research and programs concerning autism, advising the Secretary of Health and Human Services on federal activities related to autism, and developing the Strategic Plan for Autism Research. However, as the GAO found in its November 2013 report, the IACC has not been able to meet this goal.
As a result of the IACC being housed entirely within the NIH, the Committee has focused almost entirely on medical research and has not benefited from meaningful participation by member agencies that focus on services. We recommend that responsibility for the operations of the IACC be shifted to the Administration on Intellectual and Developmental Disabilities (AIDD), within the Administration on Community Living. AIDD has a successful track record of operating the IACC’s sister committee, the President’s Committee on People with Intellectual Disabilities, and would be effective at ensuring meaningful coordination and balance between agencies focused on medical research and those focused on services and programs. The IACC should also be expanded to include representation from additional agencies that serve autistic individuals, such as the Department of Labor, Department of Justice, National Council on Disability, and Department of Housing and Urban Development.
Autistic people are uniquely suited to assessing which research and services programs are most needed in order to improve their own lives. However, the IACC is only currently required to have one of its members be an individual with an autism spectrum diagnosis. Congress should revise IACC’s authorizing statute to require that 50% of the public members of the IACC be individuals with an autism spectrum diagnosis.
We believe that, to the extent that an interagency committee on autism exists, that committee should develop and implement a unified strategic plan that encompasses all federal research and programs related to autism, and that services are a vital component of any such strategy. We do not recommend that services-related research and programs should be coordinated separately from other autism-related research and programs.
Use of language that stigmatizes autistic individuals.
By naming its primary autism-related legislation the “Combating Autism Act,” Congress furthers stigma and prejudice against autistic people and their families. The purpose of federal autism-related activities should not be to “combat” autism but rather to support autistic individuals and their families. In its reauthorization, Congress should use a less stigmatizing name, such as the Autism Community Empowerment Act or the Autism Assistance and Bill of Rights Act. The latter would bring the legislation in line with the Developmental Disabilities Assistance and Bill of Rights Act of 2000.
Sincerely,
American Association of People with Disabilities Association for Autistic Community Association of People Supporting Employment First Association of Programs for Rural Independent Living (APRIL) Autism Society of America Autistic Self Advocacy Network Autism Women’s Network Bazelon Center for Mental Health Law The Jewish Federations of North America Little People of America National Council on Independent Living National Coalition for Mental Health Recovery National Disability Rights Network National Down Syndrome Congress National Federation of the Blind Not Dead Yet Quality Trust for Individuals with Disabilities TASH Texas Advocates