Autism voice on the National Council on Disability … maybe

The National Council on Disability (NCD) may have an individual with autism in the mix soon. The NCD is an independent federal agency, composed of 15 members appointed by the president … and there’s the potential that one of these 15 will be Ari Ne’eman. Mr. Ne’eman is the founding president of the Autistic Self Advocacy Network (ASAN). Apparently, his appointment is provoking a bit of controversy.

The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement in the world of autism. If you read the statement on the National Council on Disability Web site’s home page, it seems like Ne’eman is a good fit for the council:

The purpose of NCD is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.

However, a story in the New York Times reports that this nomination is controversial.

Mr. Ne’eman declined to be interviewed, citing the pending action on his nomination. But in previous interviews with The New York Times and other publications, he has argued that those most severely affected by autism are the ones who benefit least from the pursuit of a cure, which he suggests is unattainable anytime soon. Instead, he says, resources should be devoted to accommodations and services that could improve their quality of life.

Easter Seals is also dedicated to having research and service dollars used to ensuring those living with autism today have access to a high quality life. Unfortunately, there are limited financial resources.

It is unfortunate that those living with autism must compete for dollars with the genetic researchers. The growing prevalence of autism indicates that there is significant need for support.

Should Mr. Ne’eman gain the appointment, he is going to have to represent people with autism. He will need to be aware and prepared to speak to the broad set of issues on the whole spectrum of people who live with autism — not just his experience.

Having an autism voice on the National Council on Disability is a positive step. Ideally, Mr. Ne’eman will be able to advocate for additional resources to help address the incredible unmet needs of those living with autism today.


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