TAMPA — It's been almost two decades since Nikole Whitehead fought the Hillsborough County school district over speech therapy for her son Andrew, who has Down syndrome.
The case took many twists and turns. At one point a jury awarded Whitehead and her husband damages because of retaliatory behavior by the district.
The couple won a Moral Courage award from the County Commission. Whitehead helped formulate district reforms, then retreated largely to family life.
All that changed with news of two student deaths and ongoing district investigations.
Now Whitehead and other longtime advocates are reconnecting and trying to mobilize support for better treatment of children with disabilities.
"I'm fired up and I'm ready to go," said Karen Clay, who is helping plan a rally Thursday at the Hillsborough Children's Board headquarters, though her son is 31. "It's been way too many years."
Whitehead, whose son is 25, has plenty to say about some board members and administrators. Among her least inflammatory remarks: "Our kids are an attractive nuisance, and an occasional liability."
Attractive, she explained, because they get federal funding.
Exceptional student education (ESE) has been the subject of intense scrutiny in Hillsborough since the deaths of Isabella Herrera, 7, and Jennifer Caballero, 11.
Isabella, who had a neuromuscular disorder, died after suffering respiratory distress on a bus. Her parents, who filed a federal lawsuit, claim employees did not position her wheelchair properly.
"When I read those articles, I said, 'That could have been my son,' " said Clay, whose son has spinal muscular atrophy, and also had a bad experience on a bus.
Jennifer Caballero, who had Down syndrome, wandered away from gym class at Rodgers Middle School and drowned in a retention pond. Some of the five ESE aides on duty were sitting on bleachers, according to a Hillsborough sheriff's report.
One was outside, smoking a cigarette.
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Superintendent MaryEllen Elia has appointed a work group to examine safety issues concerning children in ESE programs. That effort is getting help from the Council of the Great City Schools and the Superintendent's Advisory Council for the Education of Students with Disabilities, a body that was formed in the aftermath of the Whitehead lawsuit.
"We have to do everything we can to retain and regain the confidence of parents who entrust us with their children," Elia said on Nov. 13. "We're looking at everything. If there's something wrong, incomplete or out of date, we will fix it."
Separately, the district's Office of Professional Standards is investigating Jennifer's disappearance and death. The aides are on paid leave pending the outcome.
School Board chairwoman April Griffin has pledged to make ESE a top priority, and member Stacy White said he will call for an outside investigation if Elia's actions don't go far enough.
But longtime ESE parent activists say the district has been down this road before.
"We don't want another study group or another task force," Clay said. "We're angry now, and we'll do whatever it takes."
Whitehead suspects the school system failed Jennifer long before she left the gym class. The sheriff's report indicates she had run from the class before, and earlier was found hiding under the bleachers.
"That little girl was not sent to school to be babysat," Whitehead said. Given the descriptions of the crowded gym, "I wouldn't be surprised at all if she hid. It was probably the noise. She had no support. She went to where she felt safe. She crouched under the bleachers.
"How would the typical parent feel if they knew that their child was crouching under a bleacher? Has anybody thought about that?"
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Battling a school district — any district — for ESE services can be a draining and all-consuming prospect, parents say.
Richard Hancock spent years advocating for his son Phillip, who is now 38. Phillip has CHARGE syndrome, a pattern of birth defects that affected both his sight and hearing.
As often happens, Hancock honed his skills by advocating for other students as well. He has thick expandable files of Phillip's school records. He authored blogs that he has since abandoned.
A graduate of East Bay High School who lettered in baseball and played trumpet in the band, he said, "I can't tell you how many times it was so surreal. We have an innate desire to trust the school system that brought us up as kids. We want to trust them. And it's very hard for us to grasp when you get into the seedy side."
Whitehead, similarly, said the experience changed her.
"I was such a nice, sweet little Southern girl when all this started and I'm a completely different woman now," she said. "Honestly, it got ugly. It got ugly."
It was never about the money, said Whitehead, whose husband Keith is a physician. When she finally got her settlement, she said, it went to the lawyers.
She said she wanted to see changes to the system. But she's not convinced things are better.
She calls the advisory council "impotent." For one thing, participants are discouraged from bringing up individual issues.
Ana Sanders, the council's president, said that despite that directive, the group is effective.
Members include parents, district officials and community agencies including the Florida Mental Health Institute at the University of South Florida and the county parks department.
"What's nice about the council is that we can see so many viewpoints," she said. "It's not just parents, not just the district, but you're bringing community agencies that have expertise."
Often, Sanders said, those who work for the district or the agencies also have children with special needs. Having staff at the table gives the group factual information when questions arise. And its recommendations carry more weight as a result.
The council has been successful in getting more information out to schools to make it readily available to parents, a longtime concern of Sanders.
"You don't have to do it for them," she said. "But empower them with information. Knowledge is power."
They have also insisted the district use "people first language"– in other words, referring to "a child who has autism" instead of "an autistic child."
Whitehead dismissed that effort as "political correctness."
But Sanders said it's much more than that.
"It's setting a tone," she said. "And it's really a matter of the human factor. My child is my son. He just happens to have a disability. His disability doesn't define him."
Marlene Sokol can be reached at (813) 226-3356 or email@example.com.