Families of special-needs kids tested as strike persists

By Alice Keesing
Advertiser Education Writer

From the moment he wakes up to the time he goes to sleep, 20-year-old Paul Alan Good needs constant attention. His mother dresses him, lifts him into his special chair, brushes his teeth, bathes him, takes him to the toilet, feeds him and keeps him occupied.

Paul Alan Good, who has cerebral palsy, requires constant attention from his parents, Paul and Judy. As the strike continues, families of more than 20,000 special-needs students struggle with issues such as caregiving. Richard Ambo • The Honolulu Advertiser

"He's home, and that means I'm here alone and I have to lift him and care for him and do everything for him," Good said. "He's like a baby. It's very difficult, but what else do you do when you love them?"

The teachers' strike, which threatens to stretch into a second full week, has left 183,000 students stranded. But it has been particularly devastating for the families of Hawai'i's more than 20,000 special-needs children, as they scramble for child care and worry about the lost teaching time for their children.

U.S. District Judge David Ezra last week expressed his concern about the strike's effect on special education and indicated he will intervene if the strike is not settled by the end of this week.

It is unclear what action Ezra might take, but he has the power to take over the education system, which could potentially break the strike.

Ezra has oversight over Hawai'i's special education system because of the Felix consent decree, which he issued in 1994. The state is under the gun to show improved services to children with special needs by December. The strike threatens to seriously derail those efforts.

"I'm hoping (Ezra) can settle this whole thing and get everyone back in the classroom," said Denita Waltz, a private consultant for families with special-needs children. "The strike has been a big test on (families). Trying to find childcare out there, forget it for your high-end special-needs students — it's not out there."

Specialized childcare elusive

The strike has put Waltz's business on hold. She spends her days on the picket line at McKinley High School with her 17-year-old son, Phillip, who is physically and mentally disabled.

"Do I think the strike is going to affect my son's progress? Yes," she said. "But do I want special education teachers to cross the line? No."

With schools closed and specialized childcare hard to find, many parents have had to take time off work in order to care for their children.

"It's a real frustrating situation," said Jamie Russell, who has taken leave from her job as a therapeutic aide to care for her 11-year-old son, John, who was diagnosed with a bipolar disorder.

Russell took her son out of his day-treatment center a week before the strike began, after he was hospitalized and she learned that he may also be autistic.

"That means his whole program right now would be improper, and the center can't address his needs properly," she said.

Russell believes Hawai'i's teachers are underpaid and deserve a fair raise, but because they are out on strike, she's unable to get the necessary people together to formulate a new education plan for her son.

So she's waiting out the strike at home with John, spending hours every day working on his academic and social skills so he doesn't fall too far behind.

With her husband at work on Kaua'i during the week, Russell has no help in taking care of John, and she can't leave him alone for more than 15 minutes for fear his natural curiosity — particularly with electronics — will put him in danger.

"It's physically and mentally exhausting," she said.

If the strike drags on for another week, Russell also will begin to feel the financial crunch while she remains out of work.

The Department of Education will face additional challenges, too, if the strike lasts longer than 10 working days. At that point, federal law dictates that the Individual Education Plans for special-needs students in the state would have to be redone.

The meetings establishing the plans, which specify services for each child, are notoriously drawn-out sessions requiring the coordination of up to a dozen people.

Broken routines hurt

Wednesday would mark the 10th day of the strike.

"That's going to create some chaos in an already overtaxed system," Eric Seitz, an attorney in the Felix case, said last week.

As with many special-needs children, any break in routine can be confusing for Paul Alan Good, his mother said.

"He is very much a child of routine," Judy Good said, as they sat at home last week. "Paulie misses school. He misses hearing the diesel (school bus) driving up in the morning to take him to school."

In many ways, Good is one of the lucky ones. She can be home to take care of Paul Alan; she took off work this year to search for grants to buy an expensive lifting system needed to help move Paul Alan around their home.

Her husband, Paul, is there in the afternoons to help out. In the mornings, Paul Good walks the picket line at Kaiser High School, where he's a math teacher.

"I don't want (the strike) to be finished because I'm tired," Judy Good said. "I want it to be finished because it's fair."

But as Good and her son fill in their days going for walks, watching the paddlers at Hawai'i Kai or buying a snow cone at Kokonuts, she asks herself how long the strike can possibly last.