SALT LAKE CITY – An idea born out of the COVID-19 pandemic has helped hundreds of families with a loved one with a disability, but now funding threatens to run out.

The “care allowance”, which gives a family member a small amount of money to stay at home and care for someone, was funded by the state until the end of August. But it depends on the federal government granting a Medicaid waiver and approving the use of funds from the American Rescue Plan Act to maintain it beyond that.

It’s a blessing for families who use the money.

Lisa Thornton, whose daughter Kate Prader-Willi has syndrome, used the caregiver compensation to stay at home and take care of her. In the COVID-19 pandemic, Kate was unable to bring health workers home or go to any type of group home due to concerns about the spread of the virus. Kate needs 24-hour care, her mother said.

“Just having the continuity of care that I can be home and take care of her makes her happier, it made her calmer. Nobody knows her better than I do and so it was a great opportunity,” Lisa said in one Interview with FOX 13.

The Utah State Legislature created a “care allowance” when it passed law that allows spouses to receive money to care for their loved ones. The state gets a Medicaid exemption from the federal government.

But the Utah Department of Human Services has now expanded caregiver compensation to help fund siblings, parents, and other family caregivers.

“The origins really are in the pandemic. Parents had concerns about sending their families in groups or even having caregivers come in,” said Angie Pinna, executive director of the Utah Division of Services for People with Disabilities.

It’s not exactly what lawmakers intended, but Senator Wayne Harper, R-Taylorsville, said he was okay with his bill being expanded to cover this. After using it successfully in this way, he wants to expand it permanently.

“It has been used very, very well and appropriately,” he said.

In order to expand it permanently, the state would have to raise up to 60 million dollars. You can get a Medicaid exemption in exchange for dollars equivalent, Senator Harper said, but they are waiting.

At the moment, caregiver compensation has cost the state approximately $ 22 million. There are 442 families in the program, each receiving approximately $ 2,372 per month in compensation for approximately 26 hours per week.

Senator Harper said that without the Medicaid waiver and permanent enlargement legislation, some Utah families could be cut off. He plans laws to expand the program but may have to start small and not cover all of them right away.

“Overall, the feedback we have received from the families we use has been very positive,” Pinna told FOX 13.

Lisa Thornton said she urged people to turn to their lawmakers to support the program.

“These kids are so tough. We can’t do it alone,” she said. “We need help and we don’t want to put her in an institution. It would cost the state hundreds of thousands more to have Kate in an institution than to keep her at home.”