Special need — state funds

When Sharon Neilson goes to sleep at night, there is an alarm on her son's bedroom door to let her know if he gets up. When her daughter has friends over, occasionally they have to tackle the boy to get him under control.

Then the police come, but they don't have any answers either: It isn't safe for the family to have Matt stay at home, but they don't know where to take him. "How do you get a kitchen knife away from a 250-pound kid when he is coming at you?" Neilson wonders.

The only real help could be through the state. She is among many desperate parents on the waiting list for services provided through the Division of Services to People With Disabilities.

On Thursday, the head of the Disability Law Center told members of the Health and Human Services budget committee the state has failed for more than a decade to come up with a plan to address the needs of people on the list.

"This issue has been raised at the Legislature for at least the last 10 years," Fraser Nelson said. "During the previous 10 years, the size of the waiting list has more than doubled."

That waiting list prompted the Disability Law Center to file suit against the state in 2002, alleging at that time the list had grown to 1,316 people waiting for care and services. "As of this morning, there are 1,664 individuals on the list," Nelson said.

Gov. Jon Huntsman Jr. has recommended funding that waiting list by $2.1 million — enough to take care of the needs of just 25 percent of the people waiting. That means some 400-plus people would come off the list and get services, but more than likely, it won't be Neilson, whose "high-functioning" autistic son will soon be 19.

"I wish people knew how hard it is to have an autistic child," she said. "What do we do as these kids get older, and there is no place to take them or send them? Who do you get to baby-sit an 18-year-old?"

Neilson's struggles are among many that will come under scrutiny of the Legislature, which will have to decide in the coming weeks how to allocate a surplus of millions to state programs long starving for revenues after three years of a fiscal crunch.

For people like Neilson, numbers and state revenues mean little as she tries to deal with the everyday challenges of an autistic son, who while "cuddly," plunges into rages she can't control. "When children are born you have an expectation they will be normal and move out of the house. None of that has happened. This expectation of this normal kid, who looks normal, has not ever happened, not in 18 years."