In response to this week’s introduction of the Autism Collaboration, Accountability, Research, Education and Support (CARES) Act of 2014 (S.2449) and the markup of H.R. 4631, the House equivalent, the Autistic Self Advocacy Network has issued the following statement:

ASAN is pleased to note that both the Senate and House re-authorization bills have abandoned the title “Combating Autism Act”. For the first time in eight years, the federal government will no longer be in the business of “combating autism”. We applaud the bill sponsors for hearing the concerns of autistic people and our families with respect to the title of the legislation. Unfortunately, the content of the new Autism CARES Act does not include critical provisions necessary to advancing quality of life for autistic people and our families. Despite productive and ongoing dialogue with the legislative sponsors, lobbying from outside groups prevented the inclusion of provisions focused on expanding employment opportunities for autistic adults, increasing the representation of self-advocates in the research process, opening up funding streams to services and adult research and placing greater emphasis on underserved communities, such as racial and ethnic minority groups, women and girls and adults on the autism spectrum.

While we were disappointed that it did not receive a vote, ASAN strongly applauds the proposed amendment introduced by Rep. Jan Schakowsky (D-IL) at today’s House Energy & Commerce Committee markup for the Autism CARES Act. Although the amendment was withdrawn after introduction, ASAN strongly supports the substance of the amendment, the provisions of which are listed below:

A requirement that the Leadership and Education in Neurodevelopmental Disabilities (LEND) program, a federally-funded training program to provide interdisciplinary training to students seeking to support children and youth with disabilities, take steps to recruit trainees on the autism spectrum and those with other developmental disabilities;

Specifically emphasizing the needs of racial and ethnic minority groups, women and girls and adolescents and adults on the autism spectrum in the definition of “culturally competent services”;

A requirement that autistic people make up at least four of the public members of the Inter-Agency Autism Coordinating Committee or one-third of the public membership, whichever number is higher, and that at least one such individual be a person who has received Medicaid Home and Community Based Services;

A requirement that LEND programs convene stakeholder advisory committees consisting of a majority of individuals on the autism spectrum or with other developmental disabilities;

Opening the Autism Centers of Excellence research funding stream to include research on developmental disability service provision, supported employment, inclusive education and other fields related to the integration of autistic people into the broader community; and,

A requirement that each Autism Center of Excellence grant awarded include a stakeholder advisory committee with a majority of individuals on the autism spectrum.

Regrettably, Autism Speaks and its allies actively lobbied against the inclusion of provisions expanding self-advocate representation in research, re-balancing autism research funding to support additional investments in services and adult issues, and requiring the LEND programs to attempt to recruit trainees on the autism spectrum and with other developmental disabilities. We find it profoundly disturbing that some in the autism community continue to lobby against any measures amplifying the voices of those most directly impacted by federal autism policy: autistic people ourselves.

ASAN calls upon our allies in the Autistic, autism and broader disability communities to work both with us and with the administration after passage of the Autism CARES Act to ensure that the implementation of the law is consistent with the provisions of the Schakowsky Amendment, which sets a benchmark for including self-advocate voices and taking steps to address long standing inequities in autism research and service-provision. Each of these provisions can be implemented through executive action absent new statutory language. To quote Rep. Schakowsky, “Increasing the voice of self-advocates will only improve our efforts.”

We remain profoundly grateful to the Congresswoman for her advocacy, to the legislative sponsors of the bill who have secured changes to the federal government’s rhetoric in discussing autism, and to all of the advocates and allies inside and outside our community who have worked on this issue. The next phase of the #StopCombatingMe campaign will focus on implementation of this legislation following passage.