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Severely disabled Plant High grad argues for inclusion, changes in special ed

TAMPA

Michael Phillips spent the happiest four years of his life at Plant High.

He shattered the curve in American Government. He could talk his principal into almost anything. He shot pictures and designed the school newspaper.

"I loved Plant," he says.

Born with the most severe form of spinal muscular atrophy, Phillips could not walk or sit up while attending the South Tampa school. He used a voice amplification device to take part in class discussions. A special switch allowed him to use his thumb to take photos and lay out pages on a computer.

At Plant he experienced "inclusion," making friends with able-bodied peers and outshining many of them in class. But that followed nine years when Phillips says he was segregated with children who had a wide array of disabilities.

It was a study in how school systems often group special needs children into "exceptional student education" classes that don't always meet their individual needs. Phillips lived in an ESE bubble, where to hear him tell it, he learned next to nothing.

His mixed experience sums up one of the oldest and most emotional issues in education — the unsettled question of how best to educate special needs students. The debate has come front and center in Tampa Bay, where recent events have raised questions about the safety and quality of ESE programs, especially in Hillsborough County.

In the last 14 months, one special needs child died while in the care of ESE aides. Another died after school bus personnel delayed in calling 911. Another tumbled off a school bus after the driver kicked her down the steps, breaking her ankle.

Last month a Pinellas student was accused of sexually assaulting a younger child with autism in a school restroom. And this month police arrested an ESE teacher at another Pinellas school, charging her with abusing two of her students.

All six students were under 12.

The Hillsborough school system counts more than 29,000 disabled children in its ESE programs. Pinellas has more than 17,000. Educating them is a huge and expensive task, complicated by the number of disabilities involved and powerful family bonds that keep parents pushing the district to do better.

School officials say much has changed since Michael Phillips, now 32, was a student. But as Phillips reflects on his education — both in ESE classes and after he joined the mainstream — he hears echoes from his childhood in the current controversies.

"I think the real issue is a complete lack of expectation for the disabled," he says.

Phillips has adapted over time as his physical condition has deteriorated. A machine helps him breathe. He eats through a tube and communicates by wriggling his eyebrows, which sends wireless messages to a computer. He weighs 76 pounds.

He also advises developers of robots and high-tech communication devices, receiving state-of-the-art equipment as compensation. The Medicaid waiver program pays his expenses. He keeps a blog and writes short stories.

Back in high school, he had the advantage of a supportive principal and a mom, Karen Clay, who pressed the district to do right by her son. "Mike should not be the exception to any rule," she says.

Her son wonders how many other students are steered as he was into ESE classes when they could get a more robust education with their typical peers.

No one can say for sure.

• • •

Because he has a tracheotomy tube, Phillips communicates through a device called a NeuroSwitch. Letters, then words, appear on a screen overhead. In his bedroom, they're duplicated on a larger screen mounted on an armoire.

Like much of the equipment that helps him function, NeuroSwitch is a product of his collaboration with assistive-technology developers.

Recently in Orlando, Phillips gave a presentation about Anybots, robots that can be a person's eyes and ears in the same room or around the globe.

Says Peter Shann Ford, whose Control Bionics firm makes the NeuroSwitch: "Thanks to the efforts of proactive operators like Michael, pushing the technology to its present limits, people can interact with the world, communicate, become employed and actively influence not just everyday life, but elevate the dignity and power of all individuals."

Phillips has pushed technology for much of his life, out of necessity. He never walked, moving from a stroller to a wheelchair and finally to a flat-bed chair when sitting became difficult.

Because of his complex medical issues, the school district placed him in ESE classes. "It was different grade levels and different disabilities all in this one room," he said.

When he was a hospital-homebound student, a math teacher spent lesson time telling Phillips and Clay about his divorce. "Every week, he'd give me an A. But we'd never actually get to doing any math," Phillips said.

A big day in fifth grade was a trip to Publix to practice buying sandwich ingredients and counting change.

One teacher read from a picture book called The Red Balloon. At home Clay was reading Phillips the Narnia Chronicles.

Often he was mentally checked out, waiting for dismissal. He'd fake illnesses to avoid school. Or he and his mom would get in the car and then decide, "not today."

Of his teachers, he said, "We almost had a peer relationship. But the other kids needed their attention way more than I did."

• • •

In ESE, the guiding legal principle is to educate students in the "least restrictive environment."

Wynne Tye, the Hillsborough assistant superintendant who until recently supervised ESE, is adamant about that principle. She's a former ESE teacher and administrator. Her daughter, who has developmental and physical disabilities, attended the Caminiti Exceptional Center, a public school for ESE students in Tampa.

"We always try to look at what kids can do, and not what they can't do," Tye said.

She says the system is more inclusive than when Phillips was a student. Enrollment in Caminiti, for example, is half what it was when Tye worked there.

Some advocates of inclusion say any time you place a child in an ESE school or classroom, you inch toward discrimination.

But in the real world, Tye said, students sometimes need the services of specialists in behavioral disorders, autism and the many other disabilities that affect some 14 percent of Hillsborough's schoolchildren.

That's why 35 percent of ESE students spend at least some of their day in ESE classrooms, though an estimated 10 percent are intellectually disabled.

Decisions about placement and inclusion are based on a student's Individualized Education Plan, a document that results from meetings with educators, therapists and parents.

Cost should not matter as the law entitles every student to a free and appropriate public education. But funding is a factor.

Hillsborough gets roughly $75 million from the state and $38 million from the federal government to meet the additional needs of ESE students.

But officials say that money never pays the full cost of specialists, assistants, medical equipment, teaching materials and transportation. Districts must absorb the rest.

And, just as not every school can have a culinary arts program or engineering magnet, different schools have different types of ESE programs and specialists.

Parents and advocates say attitude is at least as important as cost, or even the law.

"My son had some of the best teachers and some of the best situations, and he also had some of the worst," said former advocate Richard Hancock, who battled the district often when his disabled son, now 29, was in school.

While he favors inclusion in theory, Hancock said it's unrealistic to think it will work with every ESE child or in every school. "It depends on the people and their attitude," he said.

The issue gets more complex with students who have behavior disorders. Should they be allowed to disrupt the class? Or should schools find a way to work with children on their behavior?

"How are they going to learn if they don't have better role models?" Hancock asks.

For Phillips, who complains that disabled students are treated "like furniture," the issue was never behavior. "I wasn't the 'difficult disabled kid,' " he said. "I was the smart, easy-to-have-around disabled kid."

Year after year, he said, he was the only student in class without a cognitive disability.

The one exception: Stuart Bentler, Jr.

• • •

A year ahead of Phillips at Coleman Middle School, Bentler was a bright child with muscular dystrophy.

The two became fast friends.

"Stuart was better at math, and I was better at English," Phillips said. "But we were basically a class of two doing the same work. We liked the same sci-fi and video games. We got to play trivia during last period."

When it was time for high school, Bentler went to Jefferson, where the district served students with high medical needs.

That's when things began to go badly, Phillips said. In-between classes, the other high school students teased him, and Bentler took it hard.

"I was socially apathetic, while he was painfully shy," Phillips said. "Kids tease each other innocently and not-so-innocently, but Stuart couldn't handle either."

Phillips took a different path. His family lived close to Plant, he wanted to attend school with his brother, and he wanted out of ESE. "I'd rather just drop out than do four years there," he said of Jefferson.

Phillips distanced himself from his friend, impatient that he was so passive. The memory haunts him. In his senior year, Bentler caught a cold that turned into pneumonia.

He died before he could graduate.

• • •

On his quest to go to a regular school with regular students, one of the first people Phillips met was Vincent Sussman.

A former football coach, Sussman was Plant's no-nonsense principal. While giving Phillips and Clay a tour of the school, he told them, "Stupid rules are for stupid people." He welcomed Phillips and promised to provide whatever he needed to succeed.

What he needed was technology, personnel and attitude.

"Michael was incredibly resourceful in getting the equipment and high-tech stuff that he needed," said Jean Clements, the former head of ESE at Plant who today is president of the Hillsborough teachers union.

Clements let Phillips have the key to her office so he'd have a place to take tests, store his books and use a breathing machine.

A one-on-one aide, Mimi Baird, saw to Phillips's physical needs and stayed with him the whole school day. "They got along famously," Clements said.

Baird learned not to correct Phillips' test answers; he once insisted on keeping a wrong answer after a teacher told the kids, "Cheaters go to hell."

Was Phillips trying to prove that he shouldn't be coddled?

Not at all, he insists. Raised a Catholic, "I'm scared of hell."

He was not the most popular kid on campus. "But people liked me, and they knew I was smart."

He took honors and Advanced Placement classes. He was well-traveled, Clements said. Students respected that. He had a sense of humor and an edge. Years later he made a video of himself in Ybor City, getting a tattoo.

Did he ever feel unsafe at Plant?

"Oh, God, no," he said. "My assistant was always right there. And, again, people liked me, so everybody always had an eye out for me."

• • •

It was the summer before junior year when Sussman was climbing a ladder to repair the roof on his one-story house. The ladder fell and Sussman broke his neck. He returned to school in August as a quadriplegic.

Hearing the news, Phillips asked his mother if Sussman could breathe. Later she realized he was concerned about whether Sussman needed a ventilator.

"I figured so long as he could breathe he could still have his barbecue and yell at people," Phillips said. "So I wasn't worried for him."

When he graduated, Phillips was given a college scholarship under a program that assists students with disabilities. He wanted to go to the University of South Florida, but couldn't get a one-on-one aide.

He attended the International Academy of Merchandising and Design for a year. The computer classes held his interest, but the others did not.

Sussman was promoted to a job as the district's director of resource management. He retired in 2008. Not long ago he choked on a pill and needed a tracheotomy.

He uses a ventilator at night. He communicates by moving his lips. His wife interprets for him.

His take on Phillips:

"Michael was very, very unique," he said. As for full inclusion, "it would have to be the right situation to make it work."

Variables include the student's attitude and the availability of nurses. Another factor that helped Phillips was that his mother lived nearby and was available if he needed her.

Does Sussman believe there are other students in ESE who could thrive in a typical setting?

"Probably," he said.

Phillips is sure of it.

"If there was me and Stuart, there have to be others."

• • •

Like Sussman, Phillips was dealt a setback when, in 2007, he choked on a swallow of juice. He aspirated it into his lungs and developed sepsis, which resulted in the tracheotomy tube.

Then, during a blood draw, he injured the thumb he used to operate the string switch on his computers. After a period of collaboration with companies in Amsterdam and Australia, Phillips wound up with the communication system he uses today.

Clay, in addition to caring for her son, is active in statewide advocacy for people with disabilities. She attended a School Board meeting recently to rebut statements by member Candy Olson, who said the district should consider how inclusion affects non-disabled students. Clay called her thinking "outdated."

Mother and son boil much of the issue down to expectations.

"I'm as medically fragile as one gets," Phillips said. "But people have expectations for me, and so they care about me. Special training hasn't kept me alive, it's care and common sense."

Marlene Sokol can be reached at (813) 226-3356 or sokol@tampabay.com.

Severely disabled Plant High grad argues for inclusion, changes in special ed 03/30/13 [Last modified: Saturday, March 30, 2013 10:18pm]
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