Sister on the Edge of Autism

A sibling's-eye view of autism in life, family, and culture.

by Eileen Garvin

Easter Seals reports on quality of life issues

Survey identifies parents' fears for their adult kids' futures.

Published on January 9, 2011 by Eileen Garvin in Sister on the Edge of Autism

In December, Easter Seals released the results of its "Living with Disabilities Study," an online survey that assessed the lives of adults with disabilities.

The survey included 1,714 people over the age of 18 - 390 adults living with a developmental disability, 318 parents of adult children who have developmental disabilities, and 1,006 parents of adult children without disabilities.

Nearly two thirds of those included had some form of autism.

The study identified key gaps in the lives of adults with disabilities that will be familiar worries for anyone who has a family member with autism - transportation, employment, independent living and quality of life, among others.

I find this study interesting, as most sibs will, because the concerns that my parents have about my sister's future today are the same ones I will have down the road.

Some highlights:

Only 11 percent of parents of adults with disabilities reported that their child was employed full time, and 19 percent reported part-time employment. These numbers compare to full time employment in adult children without a disability at 48 percent and part-time work at 24 percent.

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Only six out of 10 parents of adults with disabilities rated their kids' quality of life as good or excellent as compared to eight in 10 of parents of adults without disabilities.

Parents shared concerns about their kids' financial independence, and almost 70 percent reported that their adult children with disabilities live with them or a guardian.

The study illuminated parents' specific fears about their kids' futures - financial, social, residential and professional - after they pass away themselves. Yet the study reports that nearly one-third of them have done little to prepare for the future. Two-thirds have no life care plan for their adult child.

Thirty-six percent of parents reported that their other children were planning to step into the caregiver role while 31 percent didn't know what role their other kids might play.

You can download the entire report at the Easter Seals website. The organization said it will use the study to raise awareness about the lifelong needs of families.

Easter Seals is a nonprofit provider of services for individuals with autism, developmental disabilities, physical disabilities and other special needs.