In The Politics of Autism, I write that autism parents must be advocates for their children, who in turn must grow up to be advocates for themselves.
Very quickly, parents will learn that there is no one-stop shopping in the autism world. Various providers offer various services, with various levels of support from the government, which largely depends on where one lives. Wherever they turn, parents run into red tape. “Trying to obtain services for a special-needs child is a never-ending process,” one mother told a Tennessee journalist. “Taking care of the children is much simpler than taking care of the paperwork.”Joseph Shapiro at NPR:
Most graduates of the Partners in Policymaking class are the mothers of young children with developmental disabilities. They've been meeting at this hotel one weekend a month for eight months.
They learned how to fight for their child in school, and how to push for health care their child needs. But also, how to read a state budget, how to talk to a state lawmaker and how to testify before the school board or city council.
There are 5.2 million children with developmental disabilities in America. That's according to Sheryl Larson, of the Institute on Community Integration at the University of Minnesota and the senior researcher of an annual report on services for people with developmental disabilities.
Partners in Policymaking is available not just in Minnesota. Currently, 29 states and the District of Columbia run classes. Since it started in 1987, the total number of graduates has grown to more than 27,000.
The graduates are the parents — almost always mothers — of a young child with a developmental disability. Or they're an adult with a disability. It's not unusual that a parent takes the class first, then the kid grows up and takes the class, too.
Those are stories Colleen Wieck wants parents to tell. She started Partners in Policymaking in 1987. At a Senate hearing in Washington on cuts to Medicaid, Wieck watched a parent struggle to tell her story — and got the idea to train parents. "One story can make a difference," says Wieck, who runs the Minnesota Governor's Council on Developmental Disabilities, which sponsors the program. "And we teach people, you owe it to the world to tell your story. You have a story. You tell it. It could change public policy."
Jillian Nelson is the first person parents talk to when they call the Autism Society of Minnesota, often because their child just got a diagnosis of autism. "The underlying message that I always give people is, 'You're going to be okay. ... Your kid's life may be different than you ever imagined, but it's still going to be a good life and everything's going to be okay."
Nelson is an adult with autism.