Disability services are a lifeline for Utah families
Disability services are a lifeline for Utah families

For the past few months, the Institute for Disability Research, Policy and Practice has been surveying families about the impact of early intervention on the lives of Utahns. The vast majority of families who have used the services say it has changed their lives. Yet providers struggle with heavy workloads and high turnover.

“All we were told was that this was actively causing damage to his brain. His brain, all the blood, was killing all of those healthy brain cells, and it was just devastating,” Courtney Schweinler said.

Courtney and Dillan Schweinler of Utah County remember the first days of their son Theo’s life. He was born three months premature. Brain bleeding began soon after, and the family’s journey with early intervention began in the hospital.

“I think almost half of his left brain is completely dead. But I mean, if you look at him now,” Courtney said.

“You would never know,” said Dillan Schweinler.

“You would never know it, but we were referred to Early Intervention through Kids Who Count and met wonderful therapists there,” Courtney said.

The Schweinler family’s experience is unique. They knew long before the need for early intervention was present because Courtney’s mother works in this field. They received help from professionals with years of experience and the therapies began right in the neonatal intensive care unit.

“I think the only areas where he still has some developmental deficits are his gait and his speech. … Everyone, everyone thinks that, or at least we are told that there is nothing to worry about and that he will catch up with time,” Dillan said.

Families across Utah receive early intervention services, but some programs struggle to provide this level of care.

“We cover Washington County, but San Juan County is also pretty new to us, but that’s a whole different league,” said Crystal Ghica.

This is Crystal Ghica, the director of early intervention at Root for Kids. The organization provides a variety of services to children in Washington and San Juan counties, including early intervention. Those early intervention services look very different in the St. George area and in San Juan County. In San Juan, it’s more difficult.

“It’s the largest county in the state, but there are only four grocery stores there, so it’s very, very rural. … we have a bilingual person there. She’s our service coordinator, speaks Navajo and English, and does service coordination for all the families there. She travels a lot … we have an occupational therapist who comes about once a month, and then anything else we need to support virtually,” Ghica said.

Funding is a major problem for Ghica in both countries, and we will address this in the next part of this series. First, we will focus on the workload, which, like funding, is a legal requirement.

“I work at an organization that has other home visiting programs where staff are managing 10 to 12 cases and the spots are full. And then there are waiting lists for families as some leave and others can be admitted. With our program, we have to admit them all and our caseload is more in the 40s,” Ghica said.

So what does this mean for the service sector? I told Ghica about the Schweinler family’s success.

“The case you described at the beginning, a child like this needs more than 1.75 visits a month, but that is our financial support.”
I think even with the limited resources we have, we’re doing the best we can across the state to help families. And I think most families would agree that it’s life-changing,” Ghica said.

Is there any chance at all for Ghica to get rid of her job?

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

By Isla