Kansas Health Institute | Information For Policy Makers. Health for Kansans.

OLATHE — Kelly and Bob Specht have three children. Connor, 17, is their youngest.

Conner is developmentally disabled, though his mother resists the characterization.

“The term I prefer is ‘differently abled,’” Kelly Specht said.

While a baby, Connor was seen by as many as nine specialists.

“When he was two months old, we had a neurologist tell us he would never walk or crawl and that he would be blind,” Specht said. “We were devastated.”

But by the time he was 2, Connor was walking. Now, he can ride a bicycle, but his vision keeps him from learning to drive a car.

“He does have some vision problems, but he can see,” Specht said. “He wears glasses, he’s able to compensate. He can lead a pretty normal life.”

He’s enrolled in special education classes. He’s able to read slowly. Making change is difficult. Sometimes, he acts impulsively, allowing his emotions to get the best of him.

When Connor was in second grade, the Spechts applied for Medicaid-funded services meant to help families rear their children with disabilities in their homes rather than in institutional settings.

“We received a family subsidy — about $200 a month — and that really helped because with someone like Connor everything’s a little more complicated to a lot more expensive,” Specht said.

But the subsidy, she said, stopped in the summer of 2009 due to budget cuts.

“That was a big blow to us,” she said. “We’re down one income since I was laid off from my job last December (2008). I’m an interior designer and with the economy the way it is, there wasn’t much to do.”

Her husband is a self-employed remodeler.

The Spechts also asked for some “evening care,” recognizing there would be times when, as parents, they would need some relief.

So far, there’s been no relief. Instead, they’re on the state’s waiting list for Medicaid-funded services for people — children and adults — with developmental disabilities.

“We know there are a lot of families who have more needs than we do,” she said, “and we feel like Connor is a success story. We have two older children; we’re not going raise him any different.”

Though Connor is all right now, his future, Specht said, is wrapped in doubt.

“He can go to school until he’s 21, but what happens after that? Is he still going to be on a waiting list?” she said. “It’s hard to imagine what we’re going to do when that time comes and those services aren’t there.”

According to the latest waiting-list numbers, 1,200 adults — special education graduates, mostly — were waiting for services; 1,074 families such as the Spechts were waiting, too.