What more money would do

Fraser Nelson, director of the Disability Law Center, commissioned a University of Utah study of the economic benefits of providing assistance to all on the disabled waiting wait. It found the $8.4 million state investment would:

l Inject $20.6 million in matching federal money into the state economy.

l Support 661 jobs, $18.6 million in earnings and $1.85 million in state and local tax revenue.

Amy and Andy Weyrich have an educated, middle-income family with a strong support network.

But there are times when their financial and emotional reserves wear thin. Their 5-year-old son, Sam, was born with leukodystrophy, a rare genetic disorder that affects the central nervous system. He can't sit up, walk or talk and requires around-the-clock supervision.

"We've tapped our friends, church and extended family over and over," said Amy. "What we need is a break to get away, heal our marriage and nurture our other children."

The Weyrichs were among 150 to 200 Utahns at the Capitol on Monday rallying lawmakers to free up more money for job support, respite care and other aid. The demonstrators represented 1,900 people with cognitive disabilities or brain injuries on the state's waiting list for disabled services. Some have waited longer than a decade.

Joining them in protest were Democrats who have recommended investing $8.4 million of the state's record billion-dollar surplus to fully fund the waiting list.

"We can do it. We have the money. It's a matter of priorities," said Rep. Pat Jones, D-Salt Lake City. "The moral test of government is how it treats those who are in the dawn of life, children; those in the twilight of life, the elderly; and those in the shadows of life, the poor, sick and disabled."

Republican legislative leaders and Gov. Jon Huntsman Jr. have recommended spending $1.6 million. Disabled-rights advocates argue more money is needed, along with a better spending plan.

Under current law, the Division of Services for People with Disabilities serves the critically needy first. When a family finally qualifies for help, a marriage has typically dissolved or a caregiver has died and the only option left is institutionalization, which costs an average of $73,600 a year.

Providing smaller supports up front, such as job coaches, would be cheaper, said rally organizer Andrew Riggle. He said 80 percent of those on the list could hold a job or live more independently with the right help.

Amy Weyrich said respite care for her family would cost $2,000 a year. With a little help, she could go back to work and help pay down some of the family debt accrued from buying expensive medical treatments and equipment.

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