‘Desperate' families get call

LINCOLN — Jimmy Trevarthen had been waiting eight years for state-funded services to address his developmental disabilities when a state service coordinator called last month.

Jimmy's mother, Dixie, said she was left speechless when the official told her there was now funding to get Jimmy into a residential facility that could address the multiple handicaps of the 29-year-old.

“It was almost shock,” the mother said. “I wasn't prepared for it because it's been so long.”

And Jimmy Trevarthen isn't alone.

After years of inattention, an influx of $15 million ordered last spring by the Legislature is helping shrink a waiting list for services for developmentally disabled Nebraskans. The list grew to a record-high 2,006 individuals by June.

Some people, like Trevarthen, had been waiting since 2001 for the appropriate help.

Since August, 945 people have accepted services offered to them, according to the Nebraska Department of Health and Human Services.

Most people were waiting for residential services — anything from a person to help with living skills a few hours a week to a group home with 24-hour staffing. Some needed vocational help, too.

More people have been offered help than anticipated, in part because some accepted a lower level of service, such as in-home help rather than 24-hour residential care, officials said.

That freed up money to help others, said Mary Gordon, director of the federally funded Nebraska Planning Council, which monitors the waiting list.

But as hundreds of people have left the waiting list, hundreds of others — buoyed by the hope that financial help was available — have asked to join the list.

As a result, the overall tally has dropped only slightly.

State officials and advocates say they are surprised and pleased that more people than expected have been offered services.

“That money is making a significant dent and providing services to families who were desperate,” said State Sen. Steve Lathrop of Omaha, who led a legislative task force that studied state services for the developmentally disabled and targeted the waiting list problem.

The story of Jimmy Trevarthen is typical of many people on the list. He landed there after graduating from high school, at age 21, in his hometown of Blair, Neb.

While in school, Jimmy received occupational training to help prepare him for simple jobs. A speech therapist helped him learn how to use a crude, electronic talking device to say the simple phrases that he cannot. He also received regular assessments to determine what services he needed next.

But when he became an adult, those services were not available because the state lacked sufficient funds.

Jimmy did get some services. He can work cleaning off restaurant tables, but he needs a job coach nearby to keep him on task.

For a couple of years, he worked at the Dana College cafeteria, with the help of a coach. These days he works at a Runza restaurant in Blair — but there was a long gap between the two jobs, according to his mother, who works with the developmentally disabled through eastern Nebraska's Educational Service Unit 3.

Jimmy is a “social butterfly,” his mother said. But his eyesight is so poor he needs help crossing streets.

He can identify words on the sports page like “Huskers,” “Chicago Bulls” and “Blue Jays” — his favorite teams — but he can't read the sentences.

He learned how to use a specially programmed iPod Touch to “speak” phrases such as “I want a Pepsi,” but his skills have deteriorated. Because he works only one hour a week at Runza, he doesn't get much of a chance to use the device, plus he doesn't have a speech therapist working with him.

His mother said he might get some of those services if he were placed in a supervised residence.

Instead, Jimmy spends a lot of time alone at his parents' home, which his mother said can slow or even reverse the progress that a developmentally disabled person has made toward leading a more independent life.

“He's not working on anything,” said Dixie Trevarthen. “That's what bothers me.”

Her overall hope and that of her husband, Don, a limousine driver, is that Jimmy might someday be able to live like their two other grown children do — independently, maybe in an apartment with a couple of friends.

With Jimmy's multiple handicaps, that might be overly optimistic. When Jimmy was 4, his parents were told he would never walk, talk, read or write.

Living independently is “a really long way from ‘never,'” said his mother. “But knowing he can get additional help gives us hope he can have more of a life than he has now.”

The $15 million increase in funding was one of the few spending increases authorized by the Nebraska Legislature during a lean budget year.

It was the first state funding increase for the waiting list in three years. The hope was to just keep the list from growing.

It has done more than that, officials said. Those on the waiting list before Jan. 1, 2007, have all been offered services.

“It's very good, what is happening,” said Gordon, of the Nebraska Planning Council. “There was little hope, and now people are getting help.”

In addition to people accepting a lower level of services than requested, the list also shrank more quickly than expected because some families refused the services they were offered.

HHS officials said that was because some families have learned to cope without the state's help. Others got their children on the list early, anticipating a long wait, and don't need state services yet because their children are still in school.

Jodi Fenner, director of developmental disabilities for HHS, said her department is “giddy” over the opportunity to help more people — and people who have waited years.

“We just can't thank the Legislature enough,” Fenner said. “I know many families are speechless.”

The Trevarthens — like many parents of those recently offered services — are still deciding what to do.

They had requested residential services, such as a supported apartment. But there are no openings in Blair, and Jimmy does not want to move to Omaha or Fremont, where vacancies exist.

Finding services in smaller towns is still a problem, Dixie Trevarthen said.

So the family is exploring at-home services — aides who could visit and improve Jimmy's use of his iPod Touch or teach him to cook — skills that would help him toward the “most integrated” life possible within a community, the state's goal for the developmentally disabled.

Daytime aides could also get Jimmy out in the community, to the local library or bowling alley.

“My goal is for my son to be happy and healthy and lead the life that he wants,” his mother said.

Eliminating the waiting list entirely was once estimated to be a $62 million job that would take years to accomplish, Lathrop said, but the recent experience provides hope that it can be done less expensively and more quickly.

But there's a new concern: The Legislature is being called into special session in less than two weeks to cut the state budget because of slumping tax receipts.

Will the financial pressures prompt the state to again reduce funding?

Dixie Trevarthen hopes not. She recently became the guardian for a 62-year-old developmentally disabled man in Blair. He just joined the waiting list and was told he could be waiting for four years.

“You cringe, because these are people who can't take care of themselves in a lot of ways,” Trevarthen said.

Lathrop doesn't think lawmakers will turn their backs on the goal of reducing the waiting list.

“The Legislature recognized that this was a long-standing problem,” he said.

“I don't think we tell those families, ‘Help is on the way' and then ‘It's not coming.'”

World-Herald staff writer Martha Stoddard contributed to this report.

Contact the writer:

402-473-9584, paul.hammel@owh.com