PC: Fox 11 Online
APPLETON, WI (WTAQ-WLUK) — No one likes to think about their own death, but for parents caring for their adult children with disabilities, it’s something that needs to be planned for.
A new community survey being launched this week is meant to help take some of that worry away.
“For my husband [Rich] and I, we love having Phillip live with us, but it’s not sustainable. It is not going to work forever,” said Harriet Redman about their 33-year old son with special needs.
In Brown, Calumet, Outagamie and Winnebago counties, more than 6,000 individuals who have autism or intellectual disabilities are living in homes of caregivers who are over the age of 60.
“We’re trying to understand, ‘What do our wide range of options need to be considering as we go forward?'” said John Edwards.
A local pediatrician and the father of an autistic adult daughter, Edwards is working with “My Housing Voice” — an initiative being launched in Northeast Wisconsin to study housing needs for people with autism and intellectual disabilities.
Several community conversations are planned for the next six weeks. There’s also a survey for residents with autism and other intellectual and developmental disabilities, along with their families and caregivers.
According to Edwards, “This study will help us understand what people who have autism and intellectual disabilities are interested in for their living and housing situations, and help us understand how we can best position Northeast Wisconsin to provide that in a way that many other states are doing now around the country.”
The goal of the study isn’t to build new facilities. Instead, it’s meant to identify all of the options available, so individuals and families can start making plans for the future.
Edwards added, “One of the common sayings in the disability community is, ‘Nothing about us without us.’ And so, this is to help bring the voices of people who have autism and intellectual disabilities and the people who are providing care for them. It’s about helping to honor the needs and wishes of your family and your loved ones who have autism and intellectual disabilities.”
For families caring for disabled children, it’s hard not to worry about what the future holds. This initiative is meant to calm those fears by finding solutions.
Redman added, “We hope that we can put less worry into the process and more hope that everybody will find a place they belong.”
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