Words
came slowly to Nick Gustin. He clung to his mother when other youngsters his
age took tentative steps of independence. He didn't enjoy being held by his
grandparents. Every reaction was an overreaction.
"I
felt in my heart that something was just not right," said his mother,
Heidi Gustin.
It
wasn't until Nick, now 10, reached first grade - after his parents held him
back a year - that educators and doctors acknowledged he might need more
testing. The UC Davis-based
That
was three years ago. Since then, Heidi Gustin and her husband, Paul, have
struggled like thousands of parents with special-needs children. The Elk Grove
family has tried to understand Nick's disability while working to secure a
haven in the special education system.
Their
universe revolves around the Individual Education Plan, or IEP, a federally
mandated road map for each child's goals and educational needs. The plan is the
linchpin of the special education system. But it covers issues so sensitive and
significant that it can lead to tense negotiations and even costly litigation
between parents and school districts.
"Everything
needs to be written out in the IEP. Everything has to be followed," Gustin
said recently, as her son played video games with his brother in their family
room. "But it is always a storm and a cloud because you are fighting and
fighting."
Special
education is often a world of conflict. Educators and parents insist they want
the best for each child.
But how
to achieve that often brings tension, as many families learn when they build a
youngster's academic life around a formalized education plan. Educators may
push back, hoping to settle on expectations they believe are more realistic and
aligned with state and federal standards.
An IEP
is a written understanding that states the child's goals, and provides a
detailed account of services to be provided, such as transportation,
instructional aides and occupational and speech therapy.
The
plan must be revised every three years, though they often are rewritten more
frequently. Parents, specialists, administrators, teachers and other experts
collaborate on it.
"I
understand where these parents are coming from. They want the best for their
children. But so do the schools and so do the teachers," said Maggie
Ellis, president of the Elk Grove Education Association and a former special
education teacher.
"You
do as much as you can at the least restrictive level. It's hard and it's an
exhausting job for both parents and the teachers. It's not something that
anyone takes lightly."
Educators
and parents nationwide are keenly focused on the future of Individual Education
Plans. Earlier this month, the U.S. Supreme Court heard arguments in a case
involving a family's fight with a Maryland school district over which side must
bear the burden of proof in deciding what goes into a child's IEP.
In
July, the newly rewritten Individuals With Disabilities Education Act went into
effect, providing an additional remediation step before parents can take legal
action against the school district. And in California, the Department of
Education is awaiting the results of a study about why the state has such a
large number of special education complaints involving IEPs.
More
than 6 million children are enrolled in special education across the nation.
Special
ed students typically make up about 10 percent of a district's enrollment. More
than 20 percent of the nation's K-12 spending is devoted to educating them,
according to the Center for Special Education Finance.
Locally,
Elk Grove Unified spends about $63.5 million a year on special ed, while
Sacramento City Unified spends about $50 million and San Juan Unified about $57
million. But when it comes to special ed, the law prohibits districts from
citing finances.
"Financial
considerations cannot be taken into account," said Bill Tollestrup,
director of special education for Elk Grove schools. "Money is not the
issue."
School
administrators say their biggest challenge is hiring and retaining a work force
of special ed teachers, speech pathologists, instructional assistants and
occupational therapists. Many specialists can make more in the private sector,
they say.
Parents
can pursue legal avenues if they're unhappy with their IEP - they can complain
to the state or seek costly mediation or due process hearings. But the vast
majority find themselves working with the district in a constant tug-of-war
over the plan's creation and implementation.
Heidi
Gustin knows all about the give-and-take.
Nick
has a high IQ, attends Cub Scouts and loves to build colorful toy vehicles,
playground equipment and buildings.
But
autism/Asperger syndrome prevents him from verbally expressing thoughts and
ideas. He retreats into his own world. He's time-oriented and needs structure,
his mother said. Spontaneous events can throw him off kilter.
Last
year was a nightmare, she said. His teacher didn't understand his disability.
Nick reacted by having what his family calls "meltdowns" in class -
exaggerated temper tantrums.
"Everything
was setting him off," Heidi Gustin said.
She
said she pleaded for more services. She wanted her son to have a full-time
instructional aide who could guide him through the general education class.
Extra
help finally arrived in December, but Gustin said that Nick was too far gone.
She pulled him out of school for two weeks and pushed the district to amend his
IEP to reclassify him and allow him more services.
Tollestrup
said that he has met with the Gustins and district officials have worked with
them. In some cases, he said, they've had difficulty hiring personnel to meet
the demands of IEPs. Elk Grove Unified now has vacancies for two language and
speech specialists and 34 vacancies for instructional aides.
The
importance of the IEP turns parents into quasi-legal experts.
Deborah
Dunhan, mother of a 10-year-old special ed student in the Sacramento City
Unified School District, says she always brings a book outlining federal
regulations to her IEP meeting.
Nancy
Hardy has a 19-year-old son with cerebral palsy who attends special ed classes
in the Elk Grove district. She brings two legal guidebooks to every IEP
meeting.
"If
you're not knowledgeable about the process, then you just go along," Hardy
said. "The problem that I see is that over time, you get in an adversarial
position and it doesn't benefit your child. It's not easy."
Dale
Mentink, senior attorney with Sacramento-based Protection & Advocacy Inc.,
which represents special ed parents, believes parents who don't immerse
themselves will get lost.
"Information
has always been a problem," he said. "There's not an eagerness or
motivation on the school district's part to say, 'Here's the scope of the
information and here's the ways you can challenge us if you disagree with
us.'"
School
officials contend the special education system is set up to provide a good
education - but not the best academic experience money can buy.
"The
thing you hear most often is that school districts have to provide a Ford, not
a Cadillac," said Nancy Reider, a deputy director of the National
Association of State Directors of Special Education.
Heidi
Gustin regularly attends meetings of a special education parent group that
weighs in on district decisions. She scours the Internet looking for new
information about her son's condition.
Since
last year, things have improved for Nick. His IEP now requires parental
approval of his teachers, a full-time instructional aide and occupational
therapy.
But her
effort continues. The Gustins are on vacation this week, but when they return,
Heidi Gustin plans to make additional requests. She believes her son is
entitled to more speech therapy.
"It's
all so consuming and it's exhausting," she said.
Definition
IEP: The
Individual Education Plan, a document mandated by the federal government that
spells out goals and needs for students with disabilities.
Seeking help
Parents
of children with disabilities can get more information at:
•
Protection & Advocacy Inc, federally funded advocates for people with
disabilities, www.pai-ca.org,
•
Developmental Disabilities Area Board
• The
California Department of Education, special education division, www.cde.ca.gov/sp/se/fp/
•
Parents can also contact their local school district to find out if it has a
special education parent advisory group.