Assertive advocates help parents get their kids on the right page
Tuesday, August 17, 2004
BY JOHN MOONEY, NJ Star-Ledger Staff, Tuesday, August 17, 2004

At school conferences, Renay Zamloot has been the target of screams, at least one flying chair and an administrator who yelled so close to her face that he practically spit on her.

But Zamloot won't back down. In one case while representing a family whose child had psychiatric problems, an administrator wouldn't get out of her face. She won, however, and had the child placed into a different school.

"He got the services," Zamloot said. "If all I had to do is take one beating, it's worth it."

Zamloot is a parent advocate, a mundane term for the dozens of adults in New Jersey who help families deal with the bureaucratic and emotional maze that is special education.

Like Zamloot, many are mothers who have gone through the system with their own children and come across other families desperate for help. Some of these parents have started their own advocacy services; others work with larger organizations dedicated to helping children.

But their increasing participation also has raised new questions, especially as special education draws more attention for its costs and efficacy. Advocates are an assertive, if not fervent, group and some educators worry that those working on their own for fees as high as $150 an hour fuel the distrust that marks many relationships in special education.

The statewide association of special education directors plans to ask the state to require some training and establish ethical guidelines in a field that now mandates neither.

"Sometimes families have a difficult time separating emotion from fact, and advocates can really help bring it together," said Patrick Keenoy, president of the association and special services director for Livingston schools. "But a lot of the advocates we are seeing now are more adversarial and basically looking to justify their fee. Ten years ago, they were really helpful. Then it became bigger business, and they're now quasi-lawyers."

Indeed, parent advocates have been active for decades. The Individuals with Disabilities Education Act in 1975 gave parents of disabled children unprecedented rights while also highlighting the need to better inform them.

One of the nation's first groups was the Parent Information Center of Teaneck, founded by Marilyn Arons, one of the leaders in the field. The center now handles about 1,000 cases a year.

The Statewide Parent Advocacy Network Inc. in Newark was created in the late 1980s to serve educational and health needs. It has become one of the state's most prominent advocacy groups in special education.

SPAN serves about 30,000 families, most by phone and e-mail, and meets directly with families in about 500 cases each year. SPAN also trains hundreds of parents to serve as advocates.

"Our goal is to help parents be their own advocates," said Diana Autin, SPAN's co-director. "When you remember that every district has access to a lawyer, the role of an advocate is so critical."

Judi Fiedel and Stephen Crooks said they realized they would need help to get the best for their son Gordon, who has a learning disability.

Gordon last year entered the Bloomfield school system as a second-grader and his parents sought programs they said were never provided.

During conferences with the district's team that reviewed Gordon's individualized education plan, or IEP, emotions often ran high, according to the parents.

"The whole IEP is a bit daunting," Fiedel said. "It's a rude awakening when they are all on one side and it's just you on the other."

A lawyer was too expensive, so Fiedel and Crooks found Zamloot through the state's active network of special education parents and advocates. Zamloot, a mother of two sons who have disabilities, has been an advocate for about seven years, working out of her Millburn home.

She reviewed Gordon's documents and reports, met with other experts and attended meetings. Crooks said he marveled at how adeptly Zamloot worked the system.

"I lean back and watch her do her thing with great confidence," said Crooks, a professional illustrator. "She has a mind like a steel trap ... and a lawyer's sense of what to say and at what time."

Much of Zamloot's job is not just communicating a family's wishes, but also knowing when to back off.

"It can be so emotional, since after all, they are talking about your child, and you need someone to keep you in check," Fiedel said. "I couldn't walk in there without Renay."

Zamloot met with Gordon's parents last week to discuss strategy for an upcoming IEP meeting, moving documents around the coffee table like chess pieces, talking about which to bring out when.

"This is our ace in the hole," Zamloot said of a report by the district's own teacher that she said would buttress her case.

Zamloot said one of several rules for advocates is to get everything in writing and pore over it, with a parent's best evidence "often written in the district's own pen." She also brings a tape recorder to every meeting, as well as a spare one in case the district also wants to tape.

Janice Vitiello, a former teacher whose daughter has Down syndrome, recently started her advocacy business after forging through the process herself and seeing first-hand how desperate families can feel.

She said the window of opportunity to rebuild a trust is only so wide before a case goes into due process and the legal system. More than 600 such cases go to administrative court each year, a steady number since 2000.

"You want for the families to build a relationship with school district before they have to get a lawyer, where everybody loses," she said. "You want the district to want your child, to think you are a good parent, and are willing to work with them."

There's the rub, though, especially with educators who argue the very premise of a parent advocate implies the schools are not advocating for a child.

"We're all advocates for kids," said Robert Cerco, Cedar Grove's special services director. "We all want what's best for each kid, but there is also a balance we have to come to so that there is enough for every child."

Special education directors and teachers say they see the gamut of advocates, some well-versed in the code and law and others who believe that their parenthood alone makes them experts. There are frequent questions as to whether parent advocates should be permitted to represent families in the legal due process hearings.

But the conflicts typically come earlier.

Cerco cited one case where a parent advocate representing a Down syndrome child pressed for a reading program largely aimed at dyslexic children and pushed the case into mediation.

"The parent didn't know any better," he said. "We eventually settled on something else, but they wasted money and we wasted money."

Advocates concede that a few controls might help. Many are trained through SPAN's program, but they agreed there are no guarantees.

"The last thing we should be doing is making it even worse," said Lorraine D'Sylva-Lee, an advocate with the ARC of Hunterdon. "By the time we get there, the situation is already frayed. To then just rip out the bottom is the worst thing we could do."