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'Caregiver compensation' for Utahns with disabilities, but the money could run out

Division of Juvenile Justice Services
Posted at 5:36 PM, Jul 27, 2021
and last updated 2021-07-28 01:15:23-04

SALT LAKE CITY  — An idea that came out of the COVID-19 pandemic has helped hundreds of families with a loved one who has disabilities, but now is in danger of running out of funding.

"Caregiver compensation," which provides a small amount of money for a family member to stay home and provide care for someone, has been funded by the state through the end of August. But it depends on whether the federal government grants a Medicaid waiver and authorizes the use of American Rescue Plan Act money to keep it going beyond then.

For families who use the money, it's been a blessing.

Lisa Thornton, whose daughter Kate has Prader-Willi Syndome, has used caregiver compensation to stay home and care for her. In the COVID-19 pandemic, Kate could not get home health workers or go to any kind of group home because of concerns about virus spread. Kate needs 24-hour care, her mother said.

"Having just the continuity of care, me being able to be home and take care of her it’s made her happier, it’s made her calmer. Nobody knows her better than I do and so it’s been a great opportunity," Lisa said in an interview with FOX 13.

The Utah State Legislature created "caregiver compensation" when it passed a law to allow spouses to get money to care for their loved one. The state gets a federal Medicaid waiver for it.

But Utah's Department of Human Services has now expanded caregiver compensation to provide financial support for siblings, parents and other familial caregivers.

"The origins are really rooted in the pandemic. Parents had concerns about sending their family to settings where there were groups or even having caregivers coming into the home," said Angie Pinna, Executive Director of Utah's Division of Services for People with Disabilities.

It's not what the legislature exactly intended, but Sen. Wayne Harper, R-Taylorsville, said he's fine with his bill being expanded to cover that. Now that he's seen it used successfully in this way, he wants to expand it permanently.

"It has been used in a very, very good and appropriate manner," he said.

To expand it permanently, the state would need to come up with as much as $60 million. They can get a Medicaid waiver to get matching dollars, Sen. Harper said, but they're waiting.

Right now, caregiver compensation has cost the state about $22 million. There are 442 families participating in the program and each gets about $2,372 a month as compensation for about 26 hours a week.

Sen. Harper said without that Medicaid waiver and legislation to permanently expand it, some Utah families could be cut off. He is planning legislation to expand the program, but may have to start small and not cover everyone right away.

"The feedback we’ve had from the families using has been very positive overall," Pinna told FOX 13.

Lisa Thornton said she is urging people to contact their legislators to support the program.

"These kids are so hard. We cannot do it alone," she said. "We need help and we don’t want to put them in an institution. It would cost the state hundreds of thousands more to have Kate in an institution versus keeping her at home."