Parents Help One Another on Children’s Special Needs : Education: Experience with O.C. schools’ disability programs prompts some to act as advocates for uninitiated.

Amid stacks of legal papers, books and school documents, the four casually dressed women seated at Theodora Parnavelas’ dining room table speak in “educationese,” using complex terms and acronyms that a school bureaucrat would envy.

They resemble a team of lawyers hashing out the details of a complicated case. And indeed their issue is a weighty one: how to get their school systems to heed their demands when it comes to the education of children with disabilities.

“Dealing with school districts is almost like playing a game of checkers,” said Debbie Hoops, whose daughter receives special education in the Ocean View School District. “They make a move, so you make a move. It’s all a game.”

Similar scenes are played out throughout Orange County, where dozens of parent special-education advocates such as Hoops and Parnavelas have emerged, forming powerful grass-roots networks that lobby on behalf of thousands of children with disabilities.

Sometimes, parent advocates simply play the role of counselor, offering emotional support and guidance. But increasingly, advocates take on more potent roles as attorneys and lobbyists, using their experiences to steer parents through complex special-education laws and thorny negotiations with school administrators. Most parent advocates do not charge for their services.

“There’s a very powerful, informal network of parents who talk to each other,” said Diana Williams of Westminster, who is considered one of Orange County’s pioneering parent advocates for special education. “Districts see them as powerful and almost dangerous. Parents who know the law and how to apply it are extremely intimidating to school districts.”

There are about 38,000 students enrolled in special education at Orange County public schools--composing about 9% of the total student population.

Although such students are a minority, their education often ignites contentious debates when parents and school officials disagree on which services would be most appropriate for their special needs.

Parents often accuse school districts of wanting to provide only the minimum level of service and pushing to keep special-education children out of mainstream classrooms. School officials say parents sometimes make unreasonable demands and insist on expensive services that their children don’t need.

One of the most controversial cases involved 7-year-old Jimmy Peters, whom the Ocean View district tried unsuccessfully last year to transfer to a class for disabled students. School officials, who contended that Jimmy posed a menace to other students, sued the boy after his father, Jim Peters, refused to agree to the switch.

After more than a year of legal wrangling, Jimmy returned to regular-education classes at Circle View Elementary on Sept. 29.

Unlike Peters, Hoops said many parents wind up giving in to district demands because they become intimidated by administrators and do not know how to lobby effectively for their children.

That’s why parent advocates have taken on such a prominent role, she said.

“The thing is, you have to know the system,” she said. “And if you bring a knowledgeable parent, school officials know you mean business.”

Hoops said she has helped many parents claim victories over the years. Once she helped a couple who wanted their son to receive occupational therapy. School officials were reluctant, but after a heated meeting with Hoops present, administrators gave in.

“The mom’s first words to me were, ‘Why did [the school official] try to intimidate us? If you hadn’t been there, we would have signed anything they wanted,’ ” Hoops said.

Although school officials said advocates sometimes help speed along discussions because of their vast knowledge of state and federal laws, they also think advocates can be a hindrance.

“Sometimes they can be a detriment to the process of moving along in a positive manner,” said Jim Hemsley, director of the West Orange County Consortium for Special Education, which coordinates special education in the Huntington Beach City, Fountain Valley, Westminster, Ocean View and Huntington Beach Union High school districts.

“I think it’s very positive for parents to share information and be informed. But if you have a group of parents who are telling other parents that school districts are not to be trusted, then parents come in with preconceived notions that make for difficult situations.”

The vast majority of advocates are mothers of children with special needs who became well-versed in special-education doctrine because of their own run-ins with school officials. Oftentimes, parent advocates take over the roles of professional advocates and private attorneys, who both tend to charge hefty fees.

One might wonder why parents would agree to spend so much time working on behalf of other people’s children. But to them, they are all part of the same big family fighting for the same cause.

“For parents of children with special needs, all you have is each other,” said Jessie Cabrera, a parent advocate in Huntington Beach.

Joan Tellefsen, director of the Team of Advocates for Special Kids in Anaheim, a federally funded organization that trains parents on special-education laws, said: “I’ve never been in a room with a group of parents with kids with disabilities in which I’ve felt alone or did not have anything to talk about. It’s a very open group.”

Networking between parents frequently starts at school functions, parent meetings and at doctor’s offices. But sometimes, it begins at unexpected places.

Toni Ahlo met Parnavelas last year at Hamburger Hank’s in Fountain Valley. The two women struck up a conversation after noticing that their children both had disabilities.

“I just said, ‘Hi, where does your son go to school?’ ” said Ahlo, whose 16-year-old daughter, Wendy, is a sophomore at Fountain Valley High School. “And she said, ‘My son is fully included at Newland Elementary in Fountain Valley.’ I said, ‘Gee, how did you do that?’ and we started talking.”

Since then, Parnavelas and another parent advocate have helped Ahlo transfer her daughter from classes for students with communication handicaps to mainstream classes--a feat that Ahlo doesn’t take lightly.

“Before I met Theodora, I tried to do it on my own, and I even paid $500 to a professional advocate who did me no good,” she said. “I knew special education wasn’t for Wendy, but I wasn’t getting anywhere by myself.

“I wish I had known earlier that people like Theodora existed. I thought you had to have lots of money to get anywhere. But she’s put in so many hours and time for me and never asked for any money.”

For her part, Parnavelas said she spends much of her free time helping other parents because she knows how important it is for children with special needs to receive appropriate services at school.

“We have to push for our children,” she said. “And parent knowledge is the only weapon.”

Debby Borden, whose son receives special-education services from the Placentia-Yorba Linda Unified School District, said she has helped more than 100 parents in seven years.

“When I first started dealing with school officials, I was very naive,” Borden said. “The biggest problem is that school districts know what the rules are and they know what parents’ rights are, but you never get this information from them.”

Much of the information she’s acquired has come from other parent advocates, who taught her where to go for help, whom to call and what to do if a school district refuses to provide assistance.

“I received so much help from people who weren’t getting paid that I started feeling it was pay-back time,” Borden said. “I started offering my phone number to other parents. Today, we have a very informal hot-line process, where we refer parents to appropriate people.”

Districts are required by law to provide special-education information to parents. But parents say many districts simply offer a parent handbook that doesn’t provide details about state and federal special-education laws.

In California, regional special-education officials organize community advisory committees made up of parents, educators and others. But parents say these boards are less effective than the grass-roots parent networks and organizations that have formed.

“Parents really do learn best from other parents,” said Williams, who began learning about special-education laws in the late 1970s, while her hearing-impaired daughter was attending local schools. “You can never underestimate what a couple of parents can achieve.”

Williams said she took on the role of an advocate after school officials tried to transfer her daughter from the Santa Ana Unified School District to Ocean View in 1979. Williams won the battle, and subsequently organized a statewide group for parents wanting information about special-education laws.

The group has since disbanded, but Williams said she still occasionally meets with parents to offer them advice or information.

Despite the proliferation of savvy parent networks, negotiations with administrators have grown more difficult in recent years as districts try to adhere to stricter federal and state special-education mandates without new sources of funding.

“Most districts are in a deficit when it comes to special ed because funding promises from the federal government never came through,” said John Thomas, Ocean View director of special education. “The mandates are there but funding is not.”

Regardless, Parnavelas said, parents must carry on their fight to provide their children with the best possible education.

“Parents are morally entitled to ask for an appropriate education for their child,” she said. “But to do this, parents must help each other. If it weren’t for other parents, I wouldn’t have known how to get help for my own son. Now, it’s my turn to help out.”