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Friday, November 17, 2023

Advice to Autism Parents

 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.”

Paolo Zialcita at Colorado Public Radio:

As most Americans will tell you, navigating the healthcare system is hard. For parents of children with disabilities, it can be even harder. 

Jenee Allen, the mother of autistic 5-year-old Beckett, said navigating Health First Colorado, the state’s Medicaid system, is like stumbling in the dark.

“If it was more streamlined, we wouldn't spend so many hours just trying to figure this out for our kiddos,” Allen said.

Allen and other parents said there’s no clear guide to getting pediatric disability services through the state’s Medicaid program. While large, engaged parent communities exist online, Allen said, every parent seems to have a different experience.

“I feel like I understand the disability process now,” she said. “However, if you put the information out there, even on the autism groups I'm on, everyone will kind of have a different answer and so you wonder if there's multiple pathways to get there and you just found a pathway.”

Multiple parents who spoke with CPR News agreed. But they all identified a few things that all parents can do to understand the system and get their children the care they need.

Allen’s tip was simple: Be a diligent note taker.

“Keep all your records. Write down who you talk to,” she said. “If you find a phone number that you connect to, only call that number and keep records of all your emails and all your phone calls so that no one can … say something didn't happen.”