HONOLULU—Parenting is a tough and wonderful journey. Add autism spectrum disorders to the mix and parenting takes on additional responsibilities and pressures. The Levin Education Access Project (LEAP) founded last year helps families facing disabilities advocate for their children’s rights to appropriate education. Named for attorney Stanley Levin, the nonprofit organization assists most families free of charge.
At the heart of its mission is strengthening the role of families and doing the front-end service work with the State Department of Education to help find reasonable outcomes in a typically adversarial process. Specifically, the organization offers some paralegal assistance and coaching to help parents prepare for meetings, presents conferences, centralizes information, and provides parent networking groups.
Levin, Susan Dorsey (LEAP’s CEO, executive director, and lead attorney), and Carl Varady (LEAP Board member and attorney) filed a lawsuit last fall on behalf of nine children with autism spectrum disorders. The lawsuit sought to stop Furlough Fridays, saying they violated the children’s individual education plans (IEPs). Although Furlough Fridays have been funded for next school year, families still must cope with the effects of truncated instruction from this past year.
As a parent of a severely autistic daughter with multiple disabilities, including seizure disorder, Kathleen Thomas says that kids with autism spectrum disorder were affected differently than other children who lost many classroom hours. “Routine is so much more important to these kids. They need routine. You can’t just put them into some afterschool program or the Y[MCA].”
According to Dorsey, successful education for an autistic child also goes beyond just a dependable schedule. Best outcomes happen with the right instruction—at the right time.
“Science since the 1970s has shown that when autistic children get 40 hours per week of applied behavioral analysis services from a trained therapist, 50 percent of those children will be indistinguishable,” Dorsey says. “Once you lose that window for communication with autism specific interventions, you can’t get it back.”
Dorsey, Varady, and Thomas agree that furloughs made family life much more difficult for all parents, and were especially tough for parents with autistic children. The upside is that the periodic four day week further highlighted parents’ essential, lead role. Under the Individuals with Disabilities Education Act (IDEA), parents are mandated to be part of their children’s IEP team.
Thomas is a longtime Levin client and a teacher at Punahou school. In the 11 years she has worked on her daughter’s IEP, she has offered advice to other parents just starting the process.
“The ability of parents to advocate for their child totally correlates with the services the child receives,” Thomas says. “There are good services for kids with autism in Hawaii, but for parents without this background, their children pay a heavy price in terms of their education.”
Dorsey adds that sometimes it’s just a very simple solution that makes the difference and that’s why the IEP is vital. Individually-tailored programs give access to education that allows autistic children to make progress, especially when coupled with a parent’s willingness to confront reality with an open mind.
“Parents are not so reluctant to have their children identified as autistic—and early on,” Dorsey says. “There are a lot of families with 0-3 year olds moving from Department of Health into the Department of Education who are about to be blindsided. And if they don’t know how important they are as parents and as IEP team members, they need to find out quickly because those early years are critical.”
According to the latest numbers in the State’s 2008 report to the U.S. Department of Education, Hawaii is home to over 1,000 children ages 3 to 21 with autism spectrum disorders, well above the 364 children reported in 2000. Varady says they do not yet have an exact number for autistic kids in the 0-3 population.
For the parents of those children, Thomas has a warning: Don’t expect the school to come to you and make suggestions. You need to have those ideas in mind and then engage in discussion with the school. “You’re the one who has to be highly educated about your child,” Thomas says.
There are two things Varady says every parent of an autistic child needs to know: What are the child’s needs and what resources are available to address those needs? “That’s the information you need to take into the IEP. Even if the DOE says no, you’re ahead of the wave at that point,” Varady says. “The best situation is one that integrates a child into the mainstream and keeps her out of a restrictive environment.”
Potentially thwarting the process is a lack of understanding in the public mind about the IDEA’s purpose. Another hurdle is the opinion of some parents of normally developing children who say that the school system is being asked to do too much for kids with special needs.
Thomas’ husband, Richard, takes a philosophical approach: “We believe pitting special education against regular education is a zero sum game. Nobody wins.”
Given budget shortfalls like those that resulted in furloughs, the Thomas family, Varady, and Dorsey admit it’s tempting to see an ever-shrinking pie, but Dorsey counters that the State receives federal funds to educate special needs students, so the pot of money isn’t fungible.
Meanwhile LEAP attorneys are continuing to represent families of autistic children in individual cases. The failures of last fall’s case to stop the furloughs and the subsequent appeal in April have not dulled Varady’s outrage. He says they will continue their cases and press for “some sort of compensatory services for kids who had programs which were taken away for 17 days. Already 5 of 6 individual cases have had favorable decisions, but the problem is the hearings officers who decide them are not like judges who have authority to order something to happen. The State has appealed those winning decisions in three instances.”
Varady and Dorsey are still angry, too, about the message last fall’s furloughs gave to everyone about how Hawaii really values the education of all its children.
In the big picture, “the furloughs showed a bankruptcy of thinking,” Varady says. “What company is going to invest in a community, which is not educating its kids? If we have an educated, motivated workforce, people are going to want to come here.”
Dorsey had hoped special education would have saved all students’ education. “We were hoping it would be a call to action because children are so important—that collectively we’re all on the same side and we would have put kids first in our culture,” Dorsey says.
Varady wants that ethos to be permanent.
“Let’s learn from our disasters,” Varady says. “Let’s see if the administration, the Legislature, and the school board can ramp up and start thinking proactively instead of watching the train go over the cliff with all kids in public school on it—disabled and nondisabled alike.”
After the coming election, let’s see who will really get on board with that.
LEAP is holding a conference on Saturday, July 17 from 8:00 a.m. at the William H. Richardson School of Law, and will include a practical, hands-on seminar with Dr. Barbara Bateman, a specialist in special education law and educator for over 50 years. Call (808) 237-LEAP (5327) for more information.
The full interview with Susan Dorsey, Carl Varady and Kathleen Thomas is on the Town Square archive at www.hawaiipublicradio.org.