The costs that come with Grace Peterson’s cerebral palsy are not small.
“A custom manual wheelchair is $14,000. $5,000 to put a ramp on our deck, and $25,000 just to adapt a vehicle,” Grace’s mom, Sammantha Peterson, said.
Sammantha says because her daughter doesn’t have an intellectual disability, she’s not eligible for certain developmental disability services that would make managing her cerebral palsy easier.
“Some of those services are access to Medicaid, respite, home renovations and vehicle modifications,” Sammantha said.
But a bill aims to address that, by studying the state’s current services and figuring out what’s needed.
“What we hope to come out of this study is that ability to not let anybody fall through the cracks,” Roxane Romanick said.
Romanick has experience advocating for families with Down syndrome but says kids like Grace should be covered in the current services, too.
“In my work, have seen people who end up falling through the cracks with the current programs that exist. We really are not meeting all the people we should be,” Romanick said.
Grace, who’s 10 years old, and her mom testified in front of the Senate Human Services committee to show their support for Senate Bill 2256.
“I think it will help me so that I can get my van, my car for me. And respite and stuff,” Grace said.
The bill provides $150,000 in funding to the Department of Human Services to conduct a study, which, a DHS representative says it supports.
“We believe that it is an important issue to study developmental disabilities as a whole, from the state’s perspective as far as where there are gaps and what we can do to improve services,” DHS Developmental Disabilities Division Director Tina Bay said.
Bismarck Sen. Dick Dever sponsored the bill after he says similar legislation in 2017 didn’t fully address the problem.
“There has been concern that some people are eliminated from services that it seems to me should be available to them,” Dever said.
The committee did not yet vote on the bill, but Grace says she’d like to see it pass.
“I’m just here for me and all my friends, and please vote do pass.”
According to the CDC, about 7 percent of children nationwide have been diagnosed with a developmental disability.