By Mike Dunn
PHILADELPHIA (CBS) — Philadelphia City Council held a hearing today on the plight of children with autism and of the parents who struggle to navigate the bureaucracy of the health care system.
Among those testifying was attorney Jackie Gallagher, whose third child, Jack, was diagnosed with autism at age 18 months.
She told the City Council members present that after the diagnosis, she was on own to find an appropriate course of treatment:
“I was handed a packet of papers with no clear direction on what a treatment plan should look like. If my child were diagnosed with cancer and I were told to figure out if he needs chemo or radiation, I couldn’t do it. But that’s what we expect families (of children with autism) to do, not just in Philadelphia but everywhere.”
Gallagher spoke at a City Council committee hearing sponsored by councilman-at-large Denny O’Brien, long an advocate for people with autism. He released a report titled “The Philadelphia Autism Project,” which examines the services and programs available to families with autistic members.
Gallagher told the committee that, first and foremost, the parents need knowledgeable advocates.
“I’m telling you these families need quarterbacks. I was able to pull it together because of my training (as an attorney), and even then it had me on my knees,” she said. “There were times I didn’t know where to turn. But I know not to take ‘no’ as answer. What about those families that don’t even know the questions to ask? They don’t know where to begin, and they’re thrust through the bureaucratic system by the medical community, with no clear guidance.”
And Councilman O’Brien noted that when children with autism turn 21, many of the available services simply stop — and then regression from the progress a child has made is likely.