DOE services When Tess Cruz's son Gabriel Tyler was diagnosed with an autism-related disorder two years ago, he was chronologically behind in his speech and had uncontrollable behaviors like rocking back and forth.
concern parents
of autistic kids
The department is holiding
meetings to address their worriesBy Crystal Kua
ckua@starbulletin.comBut after a hard-fought battle to get special-education services, the 5-year-old is talking and is better able to control his rocking. His mother hopes he will be able to attend kindergarten next fall.
"They say it's like a miracle," the Kapolei woman said. "Now I can say that we have our son back. We feel we have our lives back, and it's like a new beginning and wish all parents could have that opportunity."
But Cruz and other parents worry about their autistic children's future progress under the Department of Education.
Beginning July 1, the DOE assumes responsibility from the Department of Health for delivering services to autistic children as part of the Felix consent decree, the 1994 court order to bring the state into compliance with federal law.
The parents plan to attend statewide community informational meetings with state education and health officials on the transition, with the first Oahu meeting scheduled for 6 p.m. today at Kaiser High School's library.
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.
State officials have planned nine meetings to tell parents about the transition to the DOE.
Some parents who attended meetings on the Big Island, Maui and Kauai last week said they came away unsatisfied.
"They want you to take a leap of faith that everything is going to work out, but if you have an autistic kid, you're not going to take a leap of faith into anything," said Mark Isenmann of Wailuku, who attended the meeting on Maui last week.
Dozens of people attended the meeting in Hilo, said Becky Nakasone of Keaau, the mother of 13-year-old twin daughters who are autistic.
"My big question was, convince me that we're not going in two years where we were six years ago," Nakasone said. "Parents are panicked because of the fear of what's going to happen to their child if it goes right back to where it came from -- the DOE."
Schools Superintendent Pat Hamamoto said she was aware that the changes were causing a lot of anxiety on the part of the parents and that the meetings are meant to answer their questions.
While parents fear that services they have fought for will be reduced or lost, Hamamoto said "our goal is to ensure that there would be no disruption of services" during the transition.
Joyce Allen's 8-year-old daughter has made tremendous progress and is now attending class part of the time with regular-education second-grade students. The Honolulu woman said part of the credit goes to her daughter's therapeutic aide, who has worked with her daughter for four years. It is that consistency and continuity that may be lost in the transition, she said.
"We're just blessed that it's gone full circle for her," said Allen, former president of the Autism Society of Hawaii. "My main concern is how these changes are going to affect my daughter."
Allen said she wants officials at the meeting to tell her the exact plan of action.
Hamamoto said some confusion is as a result of the DOE modifying its language to conform with the Individuals with Disabilities Act; for example, changing the title of a therapeutic aide to skills trainer.
On Kauai, attorney Linda Nuland-Ames, the mother of a special-needs child, said parents also are concerned that the DOE may not have enough personnel on Kauai to follow through with the transition.
As part of the autism program's transfer, the DOE has named the agencies with the winning proposals to provide contracted services to autistic children at a budget of $11.7 million.
While the DOE has named Ala Kai Na Keiki to be the primary service provider on Oahu, in Kona and on Kauai, and Child and Family Services on Maui, state officials told those attending the meetings last week that they could not give them any information about the proposals because other agencies are challenging the award.
Laura Cook, founder of Hawaii Autism Resource Team and the mother of an autistic child, said she and other parents are concerned whether those who will be hired to work with their children will be qualified to work with autistic children.
Isenmann is also concerned whether the DOE will be genuine in its attempt to create "individualized" education plans (IEPs) for children, especially in light of a memo that has been sent to schools on Maui. The memo lists recommendations that schools should take in transitioning autistic children to new services.
For example, the memo suggests that in the IEP, schools should "be sure to write in how to fade the supports to foster the student's independence."
Isenmann said the memo is an example of the take-it-or-leave-it attitude they fear will continue.
"How can anybody trust the system when you see memos like that, when they steer you in a direction where you think it's wrong?" he said.
If his son's services at Kahi Mohala or Loveland Academy are taken away, Isenmann said, the safety of his child and those around him will be at risk.
"You're talking about putting a child's life in jeopardy," he said. "If all his mental health needs aren't there, life is over."
Complex area superintendents for the Maui school district Allen Ashitomi and Donna Whitford, who sent the memo, did not return a phone call for comment.
Hamamoto said she was not familiar with the Maui memo, but said "the department does not have any intention of reducing those supports which help a student to become independent."
"One of the department's goals is to have all students become independent learners, and as that happens, the level of supports would look different," she said.
State Department of Education
