When tomorrow comes

By LYNNETTE HINTZE

Parent work group helps children with disabilities prepare for adulthood

The Daily Inter Lake

When 2 1/2-year-old Alex Haskins was diagnosed with autism, it was difficult for his parents to look past the end of a week.

At that point, they couldn't imagine what Alex's life would one day hold. But nearly 11 years later, they're realizing that years of painstaking skill-building eventually will help their son make the transition from child to adult.

"Alex has a real possibility for supported independence," his mother, Lil Dupree, said. "For a long time, all we could do is talk about today."

Dupree and Karlyn Gibbs, intensive-services support coordinator for the Child Development Center that serves western Montana, founded a parent work group a year ago that's dedicated to educating and inspiring parents about post high-school options for their children with disabilities.

"Far too many special-education students in our community exit school and stay at home all day with family members, some of whom have to quit work to care for their adult child," Gibbs said. "We hope to help parents think about creative ways to support their child in achieving a high quality of life as they enter adulthood."

The options available for adults with disabilities are still very limited, Dupree said.

"There are very few slots, and the waiting list for adult services is crisis-driven … it penalizes families who are coping," she said.

Nationally, less than 8 percent of students with disabilities leave school with jobs, are enrolled in post-secondary education or are living independently. A study commissioned by the Bush administration in 2002 revealed that about 70 percent of Americans with disabilities between the ages of 18 and 64 were unemployed or grossly underemployed.

"By planning early for these young people, in collaboration with parents, schools and other organizations, we hope to improve the outcomes for our local young people with disabilities," Gibbs said.

By law, schools aren't required to focus on transition planning until the student is 16. By then, it's too late, Dupree said.

Monthly meetings of the work group feature guest speakers who talk about issues such as housing, services for adults with disabilities and case management.

Organizers had three purposes in mind when they formed the group - find out the full scope of available support services, find parents who aren't being served by those services and find other parents who are searching for non-traditional options for adults with disabilities.

ONE OF THE nontraditional options currently under way is the Partnerships for Transition Project, a collaborative venture between the University of Montana Rural Institute on Disabilities and PLUK (Parents Let's Unite for Kids). Funded by the Montana Council on Developmental Disabilities, it's designed to improve transition outcomes for middle-school youths with developmental disabilities.

Alex and his parents, Dupree and Dwaine Haskins, have been selected to participate in the project. Alex, 12, will be one of the project's 10 pilot students from across Montana.

"We hope that our entire work group can benefit from this experience," Gibbs said.

Because research has shown that students with paid work experience while in high school are more likely to be employed after graduation, the Partnerships for Transition project focuses on skill-building that can help middle-school students with disabilities discover their strengths and interests.

The project will provide quarterly teleconference training about transition issues and develop a "tool kit" communities can use to host annual transition forums. It also provides an avenue for disseminating information and networking with agencies that help people with disabilities.

THE HASKINS family has seen firsthand the benefits of teamwork for helping children with disabilities further their skills. They work closely with development center staff and Alex's teachers at school, and it's been a collaboration that has helped Alex immensely, Dupree said.

They've also seen the benefit of intensive therapy from the time their son was diagnosed. Dupree, who serves on the center's board and works for Northwest Montana Human Resources as an agency and community development specialist and grant writer, stayed home with Alex for four years after his diagnosis.

"I worked with Alex 24-7," she said. "If you teach a good skill, you have it for life, but some skills can take [as long as] four years to learn."

They use a modified Applied Behavior Analysis that helps Alex learn by breaking down tasks into components and then stringing those components together to teach a skill.

"It's made me a more intentional parent," Dupree said. "You have to have everything planned out, it's less spontaneous."

But day by day, year by year, their work with Alex paid off in skills that now include reading, operating a computer and playing video games. He can take his own showers, brush his teeth and generally care for himself, tasks that initially seemed out of reach.

Their approach to skill-building has proven that "the sooner you start, the better it is," Dwaine Haskins said.

There are still difficult days, he added, but it has helped him to think of autism as a problem to overcome rather than an affliction.

"There is no cure and no miracles," he said. "He has a problem and we will work to overcome that problem."

Dupree, who also serves as a mentor for parents, said parents of children with autism shouldn't be afraid of the label of autism.

"Help doesn't flow without a diagnosis," she said.

Knowing what resources are out there is difficult, and figuring out how to "braid" resources together to benefit a child with a disability is equally tough. That's where the work group can be an effective tool for parents, Dupree said.

Parents interested in attending the next work-group meeting can call the Child Development Center at 755-2425.

Features editor Lynnette Hintze may be reached at 758-4421 or by e-mail at lhintze@dailyinterlake.com