Assertive
advocates help parents get their kids on the right
page
Tuesday, August
17, 2004 • BY JOHN MOONEY • Star-Ledger
Staff
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."
Copyright 2004 The Star-Ledger. Used by NJ.com with
permission.
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