Utah parents worry about decline in services for their disabled children due to budget cuts

From The Salt Lake Tribune:

WEST JORDAN, Utah -- At the age of 35, Kate Behle (pictured) has intentionally banged her head so many times — on concrete floors, on bricks — that she lost an eye. So when the autistic woman’s parents discovered that their daughter’s state funding might be cut by 10 percent or more, they feared for her safety.

“Having experienced staff that have been with her for a while and therefore earn more money is absolutely essential,” said her mother, Sue Behle. “If they lose that, my concern is that Kate would be in danger from other people’s very aggressive behavior or from her own, that she could cause herself further brain damage.”

July is the beginning of Utah’s fiscal year, so hundreds of parents of disabled children have spent the past week in turmoil as they realized what a $2.5 million state funding cut might personally mean for them: fewer visits by caseworkers, reduced money per person for services and less individualized attention for people with intensive needs like Kate Behle.

Statewide, many parents and private companies are surprised by the size of these cuts after the Legislature backed off from more-controversial decisions earlier in the session. Now they feel the state’s highest-needs individuals, who are often the most expensive, are under threat.

The Legislature cut $2.5 million in general-fund dollars to the state Division of Services for People with Disabilities, which serves about 4,400 Utahns. An additional $700,000 is needed to pay for increased projected medical needs and behavior problems, as required by federal law. State officials weren’t aware of the magnitude of that number at the time of the session.

More than 2,000 cases will be reviewed by division officials to determine if it is necessary to continue the same monitoring level by private staff. In the past, the default policy had often been to offer one-on-one services when someone had a behavioral or medical problem. Now officials are exploring less-costly options, such as increasing staffing ratios, though they say no one who needs individualized services will lose them.

Alan Ormsby, the disability division’s director, says he is following the intent of the Legislature after consulting with elected officials and community members during and after the session. The cuts include eliminating state employees and a broad rate cut affecting caseworkers throughout the state.

“I want them to know these are heartbreaking decisions,” he said. “I’m not setting out to implement these cuts in any way other than the way I’ve been directed by the Legislature and the way we have to do it to make ends meet at the end of the year.”

On July 1, the 216 residents at the American Fork-based Utah State Developmental Center, home to many of the state’s most vulnerable disabled residents, lost access to their therapy pool and the therapeutic horseback riding some critics saw as a luxury. The horses will be returned to their owners; the pool shut down. And the state will save an estimated $150,000.

In an effort to eventually save about $2 million, the center is considering eliminating 30 to 45 staff jobs. Some are retiring or leaving and will not be replaced. Some will be laid off and hired back on contract to save on benefits and other costs. Professionals such as speech therapists may become less available to residents.

Darrelyn Davis’ daughter, who lives at home in Price, is 30 but has the physical abilities of a 2- to 3-month-old. Born with cerebral palsy and other disabilities, she is in a wheelchair or lying in bed at all times. It can take more than an hour to feed her a meal. Now the state pays for someone to watch her and another client simultaneously.

“My concern is that if you go to a staffing ratio of 3-to-1, there will basically not be someone there when she needs help — when she’s choking or when she’s vomiting,” Davis said. “My daughter is not going to change. If anything, she is getting worse.”

Parents and community members have not kept their ire a secret, speaking up to legislators who oversee the disabilities division. Rep. John Dougall, R-Highland, co-chairman of the Health and Human Services Appropriations Subcommittee, is critical of the outcome.

“There were several things we did to try to mitigate impacts on services,” he said. “It almost looks like from my perspective that Mr. Ormsby is going out of his way to make those cuts more egregious on recipients [rather] than making his operation more efficient.”

Some of the most frustrated parents are those whose high-needs children are in residential services such as group homes. About 50 individuals are expected to be affected in this funding group. Nineteen families, including Kate Behle’s, filed appeals with the state by earlier this week to protest the drop in payment rate to the company that cares for their children. Despite the funding change, the state is not instructing companies to reduce their level of care.

Behle, who lives in a group home, has a rare form of hypoglycemia that can cause seizures and requires constant maintenance. Living with other autistic roommates who sometimes display explosive aggressive behavior, she is small and vulnerable, her mom said.

Kate’s mother worries that the new budget cuts could lead to the closure of CTA, the organization that cares for her daughter.

Sally Swenson, the program director at CTA Community Supports, wishes the cuts had been equalized across providers. Some providers, like hers, specialize in the most-vulnerable clients.

“It seems like they’re bearing the brunt of the cuts,” she said.

Another major change is that all private caseworkers, also called support coordinators, will receive a 15 percent rate cut, saving the state $570,000. As a result, they’re being asked to do less. The coordinators, who used to visit most clients monthly, will now be allowed to visit the majority every 60 to 90 days, depending on the client. Those with the most-intense needs will still receive monthly visits.

“I think there’s a risk some of those health and safety concerns will fall through the cracks,” said Scott Payne, a support coordinator.