Saturday, January 7, 2012

Florida parents seek help from special-education advocates

from the Orlando Sentinel. In the picture, Heidi Handley plays with her son Adam, who has Asperger's.

Tavious Diamond, 9, knows he's missing out on events such as Field Day and subjects such as art because he's in special-education classes at his elementary school. His mother, Jennifer, is sure he would do better in reading if he were moved into regular classes.

But she has felt so stymied trying to convince his school that she hired a special-education advocate.

"I'm furious," said the Altamonte Springs mother of three, who has hired Deltona advocate Jamison Jessup. "I thought the school system was going to do everything they could do. They failed my son."

Diamond is one of a growing number of parents in Central Florida and across the country who are paying advocates or lawyers to help them navigate the complex world of special-education services.

Federal law requires public schools to provide a "free, appropriate public education" to disabled children in the least restrictive possible setting. It also requires parents to be involved in placement decisions.

Most parents don't hire outside help. But those who do say they think the schools aren't listening to them.

"Parents are extremely frustrated," said Mark Kamleiter a St. Petersburg-based attorney who has focused on special education statewide since 1996. Kamleiter, a former special-education teacher, said he has seen the number of advocates and attorneys who focus on special education spike in recent years.

"Parents are discovering they have rights," he said.

Advocates, who are not lawyers and do not need special certification, help parents learn what choices they have in their child's education. They sit in on school meetings to develop or change the Individualized Education Program legally required for each disabled child. Some advocates also help parents file due-process claims in state court when they think the law is being violated.

Many, such as Orlando advocate Pam Lindemann started out advocating for their own children.

Lindemann and Jessup, who both advocate full time, charge $75 to $100 an hour, though they also offer a sliding scale. A lawyer can cost three times as much. Many other local advocates are volunteers or work part time, and some don't charge at all.

Exact numbers of advocates are not available, but Kamleiter said they outnumber the about two dozen Florida attorneys who focus exclusively on special-education law.

Lynda Langa, a special-education director with Orange County schools, said she has seen an increase in the number of paid advocates in the past few years, though the district also contracts with three "ambassadors" who help parents work through the special-education process.

"There can honestly be a breakdown between a school and parent," Langa said. "If they feel they are not strong enough by themselves, they have every right to bring someone in who can negotiate or speak education language."

But there can be real disagreement about what placement is best for a child. And Langa said advocates who refuse to compromise, or come in with a litigious mind-set, don't help.

Advocates say most educators want what's best for the children. But they may not know the law or think they can't offer special equipment or individualized help for financial reasons. But each advocate also has stories of hostile principals or school staff who resented their presence.

"I used to believe they're out to screw parents. That's not the case. It's the system," said Lindemann, whose daughter, now 15, has cerebral palsy. She said she wished parents didn't need the help, but "there's a huge need." Lindemann has also trained about 60 people to serve as advocates in the past three years.

One of her clients, Heidi Haines Handley, called Lindemann her "personal hero."

"If you have never been to an IEP meeting, you have no idea how intimidating that they can be, even for a very confident person," Handley said. "Everyone should have an advocate to go with them."

Handley said Lindemann helped her change her son Adam's placement, and ultimately his school. He has Asperger's syndrome, an autism-spectrum disorder.

Jessup, of Deltona, branched out into full-time advocacy after working as a paralegal for a lawyer who took special-education cases. His wife is also a special-education teacher.

He said he often sees schools refusing to evaluate a child for special-education services. Other cases involve a child's placement, the type of help a child gets or difficulties when a parent wants to use a McKay Scholarship, a state program that pays for special-education students to attend private schools.

"You often hear parents aren't as involved as they should be," Jessup said. "My parents are. Just communicate with them."

Diamond, Tavious' mother, detailed years of frustration, starting when her son got in trouble for banging his fists on the desk and hiding under it in first grade. He has a brain malformation and was placed in a class for students with emotional problems.

"It makes me feel really bad because the class is not for normal kids," said Tavious, who no longer acts out, according to his mother. His class doesn't attend art, music and media classes as often as other students, and his mother said they were excluded from Field Day.

When it took summer school to get him reading last year, his mother decided she needed to get him into more-challenging classes in fourth grade.

Diamond said she's finally making headway with Jessup's help. Tavious recently started attending reading class, lunch and classes like art with his peers. His school also agreed to do new tests of his behavior.

"He's enthusiastic about doing the work and the homework," Diamond said of the new classes. "I will definitely never go to another IEP meeting without Mr. Jessup."