Disabled people in Utah fight to keep crucial services

From the Salt Lake Tribune:

Every morning, Greg Naccarato (pictured) wakes up at dawn and waits. Since he broke his neck in a climbing accident, putting his feet on the floor isn't something he can do himself.

Using a remote control, the quadriplegic unlocks his front door so Nidia Ramos, a nursing assistant, can rescue him.

The state of Utah has been funding that liberation for almost 20 years, but Naccarato fears it's about to stop.

Budget cuts and a looming massive reorganization at the Division of Services for People with Disabilities have alarmed disabled Utahns and their families. Some decisions are not finalized and many details are still emerging, leaving people like Naccarato worried they may no longer receive help.

"I may end up staying in bed for several days," he said. "When I'm in bed, I'm pretty much helpless."

The disabilities division has proposed to close offices, privatize some staff, freeze its waiting list and eliminate state funding to several programs. One cut, a $265,000 reduction in help for Utahns who make too much to qualify for Medicaid, will affect about 100 Utahns like Naccarato.

Some may see their services reduced or cut entirely. Simultaneously, the Utah Transit Authority is considering steep rate increases to its paratransit program and proposing to discontinue service to several hundred Utahns.

Some parents of disabled children and adults with disabilities say they feel under attack.

"We are a voiceless community," said Amy Weyrich, whose 8-year-old son has multiple disabilities. "We're all caretakers. We don't have a ton of time to spend fighting the people that make those decisions."

The mother, who has advocated at the capitol for respite care, has been on the state waiting list for services for her son for about six years. With the waiting list now expected to freeze, she feels almost hopeless.

Advocates and politicians urged parents to speak up this week at a public meeting on the disability division's plan.

"If we choose to sit back and complain, we have no one to blame but ourselves," said Kris Fawson, a public policy specialist with the Statewide Independent Living Council.

Rep. Trisha Beck, D-Sandy, who has a child with a disability, said the community needs to unify. "Every one of us needs to contact our legislator," she said. "We need your help."

When Mark Christiansen, a quadriplegic, started receiving state funding to pay for help at home, he was three months behind on his mortgage.

"I was paying my nurses to get [me] out of bed so I could try and generate income," the 64-year-old said. "I figure I can't do anything if I'm still in bed."

Christiansen, who broke his neck in a diving accident when he was 16, receives about $600 from the state each month. It doesn't pay for all the aid he needs, but it helps. Yet he's worried he's going to lose the funding. Going into a residential care center instead would cost the state a "fortune," he said.

Naccarato, a Web designer who recently lost his job, is far from helpless once he starts his day. He lives alone in his condo, only needing someone to help him back into bed at night, a service he pays for himself. The 42-year-old recently sold his specialized van to raise cash in preparation for losing his state funding and future bills.

Yet he's managed to maintain perspective.

"I see other people being affected by this economy who are living in tent cities," he said. "They've lost their homes. They're worse off than I am."