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Monday, April 21, 2014

Adults with Autism in Massachusetts

In Massachusetts last week, the State House News Service reported:
The House unanimously passed a bill on Wednesday intended to improve educational opportunities and access to services for people with autism or other intellectual disabilities.
The legislation (H 4047) would also create a special commission to look at state policies dealing with individuals with autism, and allow families to set aside money tax free in savings accounts to pay and plan for the long-term care and housing of children with intellectual disabilities.
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After the House voted 151-0 in favor, there was a smattering of applause from some members in the chamber. The bill would also expand eligibility for developmental services to individuals with IQs higher than 70, a current rule that Bradley said excludes many people with autism who have other developmental challenges they must overcome.
At The Boston Globe, Lucy Berrington explains the need for the bill:
For most of our adults with autism (or almost any other developmental disability), state services are a fantasy. Current eligibility for such services is not just inadequate. It is among the very worst in the country, possibly the worst, according to a review last year by the Disability Law Center, an independent advocacy organization in Boston. Moreover, if those autistic adults have a serious mental illness that under existing law makes them eligible for state support, they have been almost without exception denied it — because they are autistic.
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Why is the need so acute? Currently, the Commonwealth is allowed by law to deliver services only to adults ages 22 and above who are intellectually disabled — but IQ is such a poor measure of functional life skills that the DLC struggled to find other states restricting eligibility to this standard. Most states include a broad range of developmental conditions. (It’s possible Massachusetts is more competitive by other measures, like quality of services.)
Consequently, when autistic people in Massachusetts age out of public education, often with marketable skills, they lose the structure and guidance that worked for them in school. This makes a successful transition to independent living and the workforce far less feasible. Likely outcomes include isolation, unemployment, homelessness, chronic health problems, and tremendous emotional and financial stress on families. Support organizations routinely hear from aging parents caring for autistic sons and daughters, terrified to die, because who will step in then?