Autism: Fighting for services for your child

NEW YORK (FOX 5 NEWS) - A child with an autism diagnosis needs special education and related services. But getting the help is no easy task. Many families are forced to endure a battle to get those services.

Christopher Campagna, 18, goes to the Forum School, a private, nonprofit school in Waldwick, New Jersey, serving children with autism and related learning challenges. His journey to get here was long and expensive one.

"We address each child's needs individually and work on the skills and deficits that they have," Principal Brian Detlefsen said.

Even though Christopher lives on the Upper East Side of New York, he has commuted to Waldwick for the last five years. His teachers and the principal said he has made significant progress.

Detlefsen said that when Christopher first came to the school he had minimal words and minimal social interaction. Now Christopher greets him every morning and interacts.

Christopher's parents learned he had autism when he was just 2.

"It was hard -- just devastating," Jennifer Campagna said.

"You hear this autism word, which is more of a label than a diagnosis because they don't really know what causes it," Joe Campagna said.

It made getting Christopher the right education even more important to his parents.

"He needs the greatest chance of independence in adulthood," Jennifer said. "He needs to get as far as he can in this."

When it was time to start kindergarten, the New York City Department of Education placed Christopher in a public school.

"He needed more experienced teachers," Jennifer said. "He needed the right classroom setting."

That is why Christopher's parents turned to attorney Gary Mayerson for help. His firm specializes in helping individuals with autism who are not getting the support they need in a public school.

"Parents of children with autism have such great needs -- they may need speech therapy, aba therapy, physical therapy. It's overwhelming," Mayerson said. "Because of that demand for services and because of the cost of that, the school districts will often resist the payment of that, and that precipitates the lawsuits."

Ayerson added, "Most of the good-quality, one-to-one autism schools have tuitions north of $100,000 -- so it's very expensive,"

Federal law allows parents to sue school districts for the cost of private school tuition if they can prove their child is not getting what he or she needs in a public school. And a recent U.S. Supreme Court ruling just raised the bar on a national standard all school districts must meet. The court ruled that every school across the country must provide "meaningful" educational experience for every child.

Christopher's parents sued the New York City Department of Education not just once but every year for the last 13 years. Sometimes they have gotten the full tuition reimbursement, but sometimes just a portion.

"It's a constant cash flow issue," Jennifer said.

"We've been out anywhere between $150,000 or north of that at one time between having to lay out multiple years and waiting for reimbursement," Joe said. "A large amount of people will just settle for whatever they can get."

Jennifer added: "They've made it so tough on the parents in recent years that they want them to fold."

"No one ever wants to give up on your child no matter how difficult, no matter how many other things you have to give up emotionally, psychologically, financially," Joe said.

"It's almost like standing up to the bully," Jennifer said. "You have to stand up for your kid and if you don't stand up there's no one who is going to stand up."