BY PHIL CUSTODIO
Clarkston News Editor
Whenever Robert White of Independence Township meets with a local or state official to advocate for those with intellectual and developmental disabilities, he starts with one thing.
He pulls out a picture of his sons.
“We always introduce our two sons because we don’t want our advocacy efforts to get lost in budget line items, pie charts, or bell curves, which can happen easily,” White said.
Robert and his wife, Sue, are parent advocates for Michael, 31, and Fred, 45, who are both on the autism spectrum. Fred lives in a group home and Michael in an apartment in Clarkston.
“They are the reasons for our advocacy,” said Robert, who was nominated for an Arc of Oakland County Dove Award. “They need to be visible and remembered in terms of their needs. They can’t advocate for themselves. They sometimes don’t have communications skills to allow them to be self advocates. That’s where parents, guardians, community and state need to be advocates for them.”
During the Autism Awareness Month of April, the non-profit charity honors individuals, companies, agencies, residential settings, technicians, teachers, employers and volunteers who have made outstanding contributions to the lives of children and adults with intellectual and developmental disabilities.
“I’m honored to be nominated – it’s humbling,” Robert said. “There are many, many parents out there who deserve it more than I. But I do appreciate it very much. It gives me new fuel and motivation to continue to do what we do.”
He is working to continue pioneers’ work during the 1990s, advancing community-based settings like group homes rather than institutions.
“They weren’t popular, but they were the right thing to do, I believe,” he said. “The advocates deserve so much credit for that.”
The Whites’ advocacy today focuses on community mental health services for aging adults, a fast-growing field.
“We’re living longer,” Robert said. “The IDD (Intellectual or Developmental Disability) population is living longer, too, leading to advanced diabetes, Alzheimer’s, arthritis, and other health issues related to older age. Living longer is great, a wonderful outcome. But it takes whole new services, specialities, and funding to support those costs.”
The current autism rate is one in 60 adults, and one in 68 births, he said.
“We’re not stopping that,” he said. “They are going to age through the system. If we don’t have not just local, but state and federal officials recognize that and the funding and broad scope of services needed, we’re going to have a disadvantaged population who dearly needs our voice. We can’t let that happen. That, in part, is why I do what I do.”
IDD children receive special education and post secondary services up to age 26 in Michigan. After that, they fall under Community Mental Health, where the focus is on employment and independence.
“More parents and guardians want their son or daughter to have a job in the community to be productive, and the son or daughter wants to be productive,” Robert said. “There are so many tremendous outcomes in employment, self-worth, socialization, feeling productive – money can be almost secondary.”
Robert also works with the Parent Alliance of Metro Detroit to help parents who have IDD children to become more effective advocates for them.
“There are very basic and general points out there surrounding policy and funding where parents and guardians can be very effective, often more effective than an agency or someone advocating on their behalf,” he said. “We’re going to age out of the system someday, and we hope Michael and Fred outlive us. If we can’t be there every year during the budget cycle to advocate for funds and policy changes for a more sustainable environment, then someone else will have to do it.”
Arc of Oakland County hosts its Award Presentation and Silent Auction on April 22 at the San Marino Club in Troy.
For more information, check “Parent Alliance of Metro Detroit” on Facebook.
BY PHIL CUSTODIO