Dividing by Diagnosis

Tuesday, July 22, 2008

Regarding Ann Bauer's July 20 op-ed "Autism: Where's the Support?":

The erosion of family advocacy for people with developmental disabilities has a complex history. After President John F. Kennedy strongly encouraged research into the causes of childhood disability, diagnoses proliferated. In 1970, there were seven associations advocating for children with disabilities and their families; now there are more than 350 diagnosis-specific groups. Naturally, these groups advocate for research into causes, prevention and cures -- and this research is important.

Meanwhile, older associations such as the Arc, United Cerebral Palsy, TASH and Easter Seals struggle in advocating for programs that make everyday life possible, including Medicaid and Social Security and initiatives focused on early intervention, education, employment, housing, transportation and civil rights. Successful policy advocacy requires the support and participation of all families of people with disabilities, including those who also support a diagnosis-specific research agenda. Good public policy does not depend on diagnosis.

People with the same diagnosis can have widely varying abilities, and people with different diagnoses can have virtually the same support needs. Modern individualized supports can serve people with autism as well as people with Down syndrome, epilepsy or any other condition. We parents must work together so everyone can have a decent, ordinary American life.



The writer is a past chief executive of the Arc, was commissioner for developmental disabilities in the Clinton administration and has a 25-year-old son with developmental disabilities.

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