Parents of disabled criticize cuts

State officials and representatives were AWOL at an event planned to give them an earful about recent cuts to Medicaid funding.

More than a dozen families with disabled children, dieticians and other advocates were represented at the Salt Lake City Main Library on Monday night, expressing anger at the way the system designed to help Utah families in need is being funded.

"It's a constant battle with the state," said organizer Ron Faerber, who has a handicapped daughter in need of Medicaid. "Every time we have a re-evaluation with the state for services, it seems we are still fighting for protection."

He said many parents of disabled children have been or will be forced into poverty by the rising cost of medical and nutritional supplies for their children, who cannot eat and/or function on their own. Several require the nutrition found in an amino acid-based formula drink that costs some families more than they make in income each month.

Jo Overton said her son's formula can cost as much as $855 per month.

"We've been fighting for over a year. I'm tired," she said. "Day to day life is difficult as it is. Do they have to make it harder?"

The Utah Department of Health, which runs the Medicaid program, could not be reached for comment, but a recent denial letter sent from the Division of Health Care Financing to the parents of the disabled children says the formula was not found to be medically necessary under current program guidelines.

The letter states that "a medically necessary service" is one that could prevent or help to cure life-threatening or painful conditions and where there is no other "equally effective course of treatment available." Many of the children affected have the option of having a feeding tube. However, in Overton's son's case, the procedure or infections that may follow could kill him.

"It's just one more thing that we have absorbed the cost of," said Cindy Green, who has two daughters requiring the added nutrition. Home health nursing hours are also being cut from the program, leaving parents to care for their disabled children alone.

"We couldn't survive as a family doing 24-hour care," Green said.

Faerber said he sent e-mails to every legislator and candidate running for office, inviting them to the event to hear the group's concerns.

A representative for Pete Ashdown, Democratic candidate for U.S. Senate against five-term Republican Sen. Orrin Hatch, was in attendance and voiced concern for the families, saying Ashdown would take on their cause.

"Ashdown supports one government program that would provide health care for all Americans," said deputy campaign manager Brett Garner. "But this is something that can be addressed immediately."