Parents of autistic At 3 1/2 years old, Curt Wolfley can point to his head, shoulders, knees and toes, pick out Barney the dinosaur from a row of other children's characters and signal a thumbs-up to those around him.
kids fret about
ed services
Some worry progress will be
lost after the DOE assumes controlBy Crystal Kua
ckua@starbulletin.comWhile these may be great accomplishments for any little guy, for Curt -- diagnosed with an autisticlike disorder -- the milestones are monumental.
His parents, the parents of other autistic children as well as community mental health advocates are uncertain and concerned about what is in store for autistic children around the state.
That's because as the state moves to comply with a federal mandate to improve educational and mental health services to special-needs children, changes are on the horizon in how the public school system responds to the needs of children with autism and its related disorders.
"We're really not sure what the future's going to be like," said Laura Cook, president of the Hawaii Autism Resource Team (HART), whose son is also autistic.
Beginning July 1, the Department of Education assumes responsibility from the Department of Health for delivering services to autistic children as part of the Felix consent decree, the 1994 court order in a lawsuit aimed at bringing the state into compliance with federal law.
As part of the autism program's transfer, the DOE put out late last month a request for proposals to agencies to provide services to autistic children at a budget of $11.7 million.
The consent decree's most crucial compliance deadline comes at the end of the month when the state is supposed to meet several key benchmarks including having all schools in compliance. A federal judge has threatened receivership for the special-education system if the state fails.
Consent decree court monitor Ivor Groves as well as state officials believe that the state will probably be found in substantial compliance although a handful of high schools and their feeder schools will still be working toward that goal past the March 31 deadline.
But Linda Nuland-Ames, an attorney with the Hawaii Disabilities Rights Center and professional chairwoman of the Kauai Children's Community Council, is skeptical of the state's compliance claim. "But they will be proclaimed in compliance."
Kauai, for example, was among the first places in the state to be in compliance. But parents on Kauai have had so many concerns that court monitor Ivor Groves is slated to meet with them later this month, Nuland-Ames said. "The parents on Kauai don't feel that anything's improved," Nuland-Ames said.
Autism, as defined by federal law, affects verbal and nonverbal communication and social interaction. Generally evident before age 3, autism adversely affects a child's educational performance.
Cook and Curt's parents, Travis and Cara Wolfley, were among the parents and community members who gathered at a recent workshop to discuss their past experiences of working within the state's system along with voicing their trepidation about what lies ahead.
A common theme during the discussion is that families have gone through many battles to gain the services that have made a difference in the children's lives.
They say the meeting to determine the services in a child's individual educational program, or IEP, turns into an "us vs. them" confrontation with representatives of the school.
"Parents are being intimidated all the time," Cook said.
Another complaint is that as soon as progress is being made, services are reduced or eliminated.
Eight months ago, Curt Wolfley could not walk, sit up or perform requested academic tasks.
After intensive speech, occupational and physical therapy along with help from a therapeutic aide at home, he has seen remarkable progress.
One day, Curt was seen sitting straight and tall with his legs crossed, making the "M" sound to request "more" music from his tape recorder and making the hand motions to his favorite songs.
But now there is talk from the DOE about transitioning Curt to a DOE preschool, his parents say.
"It's brought up at every IEP meeting," Cara Wolfley said.
"We home-school him, so they're trying to basically force him into their preschool, their special-ed preschool," Travis Wolfley said.
Debra Farmer, the DOE special-education director, said the IEP team determines the best course for transitioning a child's services. "It shouldn't be a blanket decision."
The Wolfleys say they are willing to do what is necessary for their son. "If the fight continues, bring it on," Cara Wolfley said.
Cook also detailed what she has done to get appropriate services, even going through the appeals process several times.
Cook said she hopes that no services will be interrupted or disrupted as the state makes the transition.
"These kids need really good intervention. It needs to be early, it needs to be right on target," Laura Cook said. "It just doesn't work otherwise; it doesn't work very well."
Cook said her son, now 7, was diagnosed with moderate to severe autism when he was 3, but after receiving services that she has fought for, she now looks forward to her son playing baseball on a community team.
"It's a big, scary thing for me," Cook said. "But it's a huge step, and it's exactly what we're shooting for with these kids -- that we need to try to get them from a point where they're nonfunctioning or functioning very low to a point where they can go into the community, function within the community."
Farmer said the DOE will be sending letters to parents to allay their fears. And once the providers who will deliver services are selected, the DOE and the providers plan to hold informational meetings.
"Their children will be served and they will get services. We'll assure them that the transition will be smooth," Farmer said.
Farmer, however, said that while it is possible that a child's service provider may change, the service will be continued.
"We can't have a disruption in service, and we have to have a transition period if we're moving from one provider to another."
In the meantime, people like Nuland-Ames and Cook are arming parents with information and support.
Cook, through HART, disseminates information to parents and does parent training. Nuland-Ames has begun hanging out with parents and giving them suggestions on how not to feel intimidated.
She talked about a band of relatives on Kauai who accompany one another to IEP meetings for support. "It's just something watching them come into a room."