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Disability services provide a lifeline for Utah families

The Schweinler family
JoLynne Lyon
JoLynne Lyon
The Schweinler family

For the past several months, the Institute for Disability Research, Policy and Practice has been interviewing families about the impact early intervention has on the lives of Utahns. Overwhelmingly, families that have received services they say were life-changing. But providers are dealing with heavy workloads and high turnover.

“We we were just told, you know, this is actively causing damage to his brain. So his brain, all of the blood, was just killing all of these healthy brain cells, and it was just devastating,” said Courtney Schweinler.

Courtney and Dillan Schweinler of Utah County are remembering the early days of their son Theo’s life. He was born three months early. The brain bleeds started soon after that, and the family’s journey with early intervention began in the hospital.

"I think it's almost half of the left side of his brain is completely dead. But I mean, looking at him now," said Courtney.

"You'd never know," said Dillan Schweinler.

"You would never know, but we were referred to Early Intervention through Kids Who Count, and we got started with wonderful therapists there," said Courtney.

The Schweinler family’s experience stands out. They knew about early intervention well before they needed it, because Courtney’s mother works in the field. They received services from professionals with years of experience, and the therapies began right in the NICU.

"I think the only places where he's still lacking developmentally is in his walk and his talk. … Everybody, everybody thinks that, or at least we're being told that there's no cause for concern, and that he'll catch up in time," said Dillan.

Families all over Utah receive early intervention services, but some programs struggle to provide that level of care.

"We cover Washington County, but also San Juan County is, is kind of new to us, but that's, it's a whole different ballpark," said Crystal Ghica.

This is Crystal Ghica, the early intervention director at Root for Kids. The organization provides a number of services to children in Washington and San Juan counties, including early intervention. Those early intervention services look very different between the St. George area and San Juan County. San Juan is trickier.

"It's the biggest county in the state, but they only have four grocery stores, so it's very, very rural. … we have a bilingual person who's there. She's our service coordinator, and she speaks Navajo and English, and she does the service coordination for all of the families there. She travels a lot… we have an occupational therapist that comes about once a month, and then everything else we have to support virtually," said Ghica.

Funding is a big issue for Ghica in both counties. We’ll get to that in the next installment of this series. For now, we’ll focus on the workload, which, like the funding, is dictated by law.

"I work at an organization that has other home visiting programs where their staff get a caseload of 10 to 12 and they are full. And then there's a wait list for families as some leave and others can be brought in. In our program, we have to take them all, and our caseloads are more in the 40s range," said Ghica.

So what does that mean for services? I told Ghica about the Schweinler family’s success.

“That case you gave in the beginning, a child like that needs more than 1.75 visits a month, but that's what we're funded at."
I think even with the limited funds that we have, we really are, across the state, doing the best that we can to still serve families. And I, I think for the most part, families would agree that that it does, it changes lives,” said Ghica.

So does Ghica have any chance of working herself out of a job?

“No, no. As long as we can afford to keep our doors open.”