IOWA (WHO) – This year, ChildServe is sponsoring a sensory-friendly morning at the Iowa State Fair to give kids of all abilities an opportunity to go and enjoy.

The fair is a start, but advocates say more needs to be done with legislation to help children with special needs and their families.

The Iowa Pediatric Healthcare Collaborative is made up of Blank Children’s Hospital, ChildServe, MercyOne Children’s Hospital, and University of Iowa Stead Family Children’s Hospital. The group met with federal lawmakers to talk about the importance of services and Medicaid for children who need it.

Those lawmakers also had a chance to hear from the families who are impacted.

“Charlie is a great example when you have supports in place, you can make significant gains,” Nancy Baker Curtis, Charlie’s mom, said.

From birth, Charlie Curtis not only had a mother but an advocate. The now six-year-old has developmental and genetic conditions that impact his daily life, but getting him the help he needed was easier said than done because the Medicaid waiver wait list is so long.

“We waited three years and 10 months,” Baker Curtis said. “No family should have to wait that long for important healthcare services that they desperately need and families are desperate.”

Thousands more are still waiting. The therapy Charlie has received so far has helped him to almost walk independently, but it comes at a cost. Their family’s private insurance only covers so much before they need the support of Medicaid.

“We just really want our local legislators to know how important it is that we reduce those wait times for families like ours,” Baker Curtis said. “That we fund those services appropriately because families are waiting for the supports that they need.”

Baker Curtis is not only fighting for her son but for all kids with complex medical conditions.

ChildServe CEO Teri Wahlig sees how it affects Iowans every day.

“It consumes families’ entire lives in many cases as they navigate a myriad of specialty providers, the challenges with insurance, some of the policies and payment issues,” Wahlig said. “It all makes it a very complex journey for them.” 

Besides improving mental health services through Medicaid, advocates would like to see telehealth services continue and expand the pediatric workforce so people can get off the waitlist. It’s all in an effort to help families who need it most.

“I don’t know how anyone can look at him and not provide access to the things he needs to have his best life?

Dr. Wahlig said the Iowa Pediatric Healthcare Collaborative meets every other month and the conversations with lawmakers will continue. Mothers like Nancy will keep fighting by telling their family’s story.