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In a class by himself

Tuesday, April 11, 2000

By SARAH M. EARLE
Concord Monitor staff

When the Concord High School Class of 2000 storms the schoolyard in a final torrent of crimson and white, when the tassels flutter and the cameras click and the caps fly, Todd Rossetti's will be among them. And for once, Rossetti won't need anyone's help to do what the day requires: Smile and celebrate.

That glorious grin, that unchecked excitement, are the same simple thanks he offers everyone who helps with the multitude of little tasks he can't perform - tasks that aren't as simple as they seem.

Rossetti, who has cerebral palsy, relies on a complex web of resources woven from family, school, community and government to get

through each day. A gap anywhere in that support system threatens his way of life.

This year, he encountered a gap. Chronologically, Rossetti, 20, was scheduled to finish high school this spring. And his family desperately wanted to see him graduate with the classmates he's known since second grade - friends like Jack Ames, who helps him off the bus each day, hangs up his jacket and hangs out with him at lunch. But a diploma, his family learned, would sever him from the vital services he receives through the school system, leaving him with few resources until at least his 21st birthday. And because his progress is measured not by class credits but by an individual education plan (IEP) constructed by his teachers, administrators and family, that diploma is less of a black-and-white matter than its ink and parchment would indicate.

"It's a tricky situation," said Todd's brother, Zach Rossetti, a student at the University of New Hampshire, who spent days researching Todd's dilemma and soliciting letters of support. "For six or seven months until he turned 21, he'd just be sitting at home. And even when he turns 21, there's a long waiting list, and it's not guaranteed."

So last month, armed with letters and petitions from classmates and friends, Rossetti's mother, Paula Payne, his brother and stepfather, met with the high school's academic review committee to request an exception for Todd. Let him participate in graduation with his class, they said, but extend his services through next January, when he turns 21.

In an unprecedented compromise, the committee granted the family's request. Citing the short time span between graduation and Todd's birthday, they decided that he could participate in the ceremony with his class, then continue working on his graduation requirements with a projected January completion date.

Payne considers it a victory for her son. "I was surprised," she said. "It was a big step."

But it was just that, a step, in the torturous transition that Rossetti and other students with disabilities must undertake. A difficult path for any graduating senior, Rossetti's journey from school to community is one rutted with funding dilemmas, logistical quandaries and differing expectations. Having secured a seat on the bus for a few more months, he now has to find a place in the world: a job, a house, a way to get around.

"It's been a struggle," said Payne, who is not just Todd's mother, but his voice, to a sometimes indifferent and misinformed world. "Everybody tries, but there are limitations."

Bending a little
The lunch shift is changing as Rossetti's occupational therapist pushes his wheelchair into the student center at Concord High School. Two teenagers clutch in unabashed passion in the middle of an aisle. Near them, a crowd has clustered around some hot topic of conversation. A bell sends students hefting backpacks off benches and racing toward classrooms.

Rossetti sees through the commotion to his usual corner table, where a red-headed teenager sits waiting for him, his own lunch finished and cleared away. Rossetti's limbs go stiff with excitement and he lets out a cry of joy.

Jack Ames smiles back, knotting the lunchtime ritual that has bound them since seventh grade, when Ames and his friends first found a spot at Rossetti's table. Today it's just Ames, Rossetti and his therapist, Karen Arnold, who teases Ames with the soft-knuckled jibes of longtime friends while she cuts up Rossetti's bologna sandwich. Rossetti, hungry from a long morning shift at Staples office supply store, smiles between chews - or chews between smiles.

It depends how you look at it.

With Rossetti, a lot of things are that way. School staff members say they used no special lens to view Rossetti's case and set no precedent, but no one can deny that the school bent slightly on his behalf. "We look at every thing on a case-by-case basis," said Concord High School Principal Tim Mayes. "Timing was the key motivation."

Policy allows a student to graduate before all of his graduation requirements are complete only if he or she has enrolled in summer school, signifying an intent to complete his credits - or, as in Rossetti's case, his IEP - before the start of the next semester.

Mayes and the rest of the academic committee decided to stretch that period of intent a little further for Rossetti, giving him an extra semester to complete his IEP, which will include assessing and honing his vocational skills, taking a class or two and trying out jobs in hopes of securing a permanent position. It's not a matter of responsibility, Mayes explained, since the district is required by law to provide services for people with disabilities until they turn 21.

"What it becomes is a real philosophical question of who gets to participate in graduation," he said.

And it is questions like these that complicate an already challenging life for families like Rossetti's.

'Inclusion' in Concord
Payne still remembers clearly the phone call that caused the first upheaval in Rossetti's education. The family was living in Manchester, and Payne had begun meeting with school administrators to map 9-year-old Todd's education. She was quickly learning that his rigid limbs and imprisoned voice would not be his only limitations.

Harsh mindsets formed a ring of barbed wire around Rossetti's physical barricades. And Payne was gouged deep by it when she picked up the phone and tried to seek support from another parent.

"He said, 'How much money do you really think the school's going to spend on a kid like Todd? How much are they ever going to get for their money?' "

If that was the question, Payne didn't want to know the answer. She packed up her family and moved to Concord - and a whole new set of challenges.

Here, Rossetti was thrust into a regular second grade-class on the tide of the new "mainstreaming" revolution, now a status quo practice known as inclusion.

"You look back, and you wonder if it was the right choice or not," Payne said. "On the whole he's probably fared much better. I think it's been a good thing as far as trying to make his life as normal as possible."

But normal is a goal fraught with irony: Making Rossetti's life normal can require abnormal efforts and resources. Payne, for instance, would love to find her son a means of communication so that he can express himself in a normal way. But the more frugal methods have proven impossible to implement across the network of people who contribute to his care. And the latest experimental methods come with a hefty price tag.

Without an effective means of communication, teachers have a hard time mapping Rossetti's progress. His IEP team struggles to give him a normal education that also fits his specific needs. And almost every year, due to staff turnover and organizational shifts, the team itself changes, forcing Rossetti and his family to reshape their expectations again and again.

Outside the school walls, the frustrations continue. Even with the cooperation of school and community, Rossetti will have a hard time finding a normal, paying job. And a normal teenage activity like going to the movies is a major undertaking. During the summer, when the school's obligation to Rossetti is limited to four weeks for just three hours a day, three days a week, Payne struggles to find her son social and recreational opportunities. The Visiting Nurse Association provides day services for him while Payne is at work, but they have no way of offering him simple activities like a trip to the park or the ice cream shop. Too often, he finds himself parked in front of the television.

Never enough money
Ultimately, it is money - or the lack of it - that keeps movies and ice cream cones and so many other things out of Rossetti's reach.

Special education costs pose perhaps the thorniest of perennial struggles for school districts all over the state. Federal mandates are not followed through with federal dollars.

And funding is just as spotty on the other side of the school walls, at the adult service agencies that provide services like transportation, personal assistance, job and housing placement for people with disabilities. Moreover, these agencies aren't held to the same laws as school districts: They are required to provide services only as funds are available.

As of January, 157 adults with developmental disabilities were on waiting lists at the 12 community service agencies that contract with the state. At Community Bridges, the Concord area agency responsible for Rossetti's services, there is a waiting list that can stretch anywhere from days to months.

Federal laws are supposed to help bridge that gap. The Individuals with Disabilities Education Act of 1990 requires school districts to work with community agencies, students and their families to provide a smooth transition from school to community.

But "the schools in general in New Hampshire are not doing a very good job with that," said Richard Cohen, a case manager for the Disabilities Rights Center. "It's not a function that schools are committed to carrying out or have the resources to carry out. Sometimes they don't even know how to begin."

A four-year study by the National Council on Disability recently concluded that all 50 states are out of compliance to some degree with the law's requirements: 88 percent fail to provide services to assist in a student's transition from school to post-education activities; and 90 percent fail to adequately supervise local agencies' education of students with disabilities.

Without a solid system in place, the question of graduation becomes a murky one. And in cases like Rossetti's, "there's pressure going in all directions," Mayes said. "The issue for many districts becomes a financial one."

At Concord High School, where about 30 students are completing their education based on an IEP rather than high school credits, educators insist students are never rushed through high school in order to alleviate the financial burden. "They're entitled to education until they're 21, and if there are still goals that need to be accomplished, they stay," said Susan Lauze, Concord High School's special education director.

But dilemmas like Rossetti's can put families and schools on opposing ends of a policy see-saw. Clutching for normalcy, some parents push to see their child graduate with his class, at the expense of losing his support services. Others have to fight with their districts over the definition of the "appropriate education" promised by the law.

"My sense is that, in general, young adults are leaving the school system prematurely," Cohen said. "The transition process isn't working well at all."

Susan Fox, director of the state's Division of Developmental Services, which administers funds for adult services agencies, said people with multiple disabilities such as Rossetti are rarely rushed through the school system. "There certainly have been times when schools have tried to show that the student had met all their requirements for graduation before they turned 21," she said. "But the law is really on the side of the student."

The process, however, doesn't always work the way it should.

"Enforcement of the law is the burden of parents who too often must invoke formal complaint procedure and due process hearings, including expensive and time-consuming litigation, to obtain the appropriate services and supports that their children are entitled to under law," the National Parent Network on Disability said.

It's a position Payne understands well. For the most part, she's satisfied with the way the district has handled her son's education. But she can't deny that it's difficult, at times, to see eye to eye.

"The main responsibility still falls on the families," she said. "We have very different expectations. . . . And in all reality, you're dealing with budgets. It's a reality."

A place in the world
There are signs, at least, of a rosier reality to come for families like Rossetti's. The U.S. Department of Education is putting together a plan to better monitor and enforce federal standards. And New Hampshire is slowly becoming better equipped to meet those standards: Last week, the state announced it had received a $3 million federal grant for special education, and Education Commissioner Elizabeth Twomey met with community and school leaders to discuss how best to spend the money. Ideas ranged from easing budget shortfalls for districts hit especially hard with special education costs, to forming a more complete range of community services.

Such advances may help people like Rossetti in the future. But for Rossetti, the future is approaching fast.

Payne has a pretty good picture of how she'd like Rossetti's life to look a year from now. But she doesn't know exactly how to paint that picture for him.

"Ideally it would be nice if he would have housing with appropriately aged peers or friends," Payne said, her weary voice trailing. "He'd need someone to assist him to where he's going, and he would have to develop some places to go . . . probably, like all of us, having to get up and go to work, and maybe have some higher education opportunities . . . maybe going on vacation once in a while. Basically, I'd just like to see him in the most normal activities any 21-year-old would be doing,"

Some of the pieces of that life are falling into place. Rossetti's education team hopes to have him try out four jobs during this semester, then follow through on the more promising ones during the summer. Currently, he works a couple of hours a day at Staples, where he greets customers and removes damaged inventory from shelves. He spends another portion of his day at Concord Hospital, where he sorts and delivers mail.

"What we do with kids who have a hard time telling us what they want is we expose them to a lot of different things," said Arnold, his occupational therapist.

Payne is pleased to see Rossetti finding work in the community. At the same time, she can't help cringing at the idea of him greeting customers. "I want him to do something more than the stereotypical job (for people with disabilities)," she said.

Rossetti's team would also love to find him a paying job - both of his current jobs are volunteer. They're assessing his motor skills to determine the types of work he might be able to perform. And they're making contacts with potential employers.

"Finding a permanent job for him is going to be tough," Payne said. "I think most employers are afraid of liability and the feeling of 'oh my gosh, I don't know anything about this.' "

In careful compliance with the law, Rossetti's IEP team has begun meeting with members of Community Bridges to enlist their support in the job search and plan other details of his transition, such as transportation and socialization.

"The pieces are there, but I don't know how it will happen," Payne said. "He just needs a lot of support right now."

The missing piece
Of all the things Rossetti will lose when the school bus stops coming to his house, Jack Ames will probably be the hardest to replace. Every morning, the quiet teenager meets Rossetti at his bus and rolls his wheelchair down the ramp. He takes him into the school building, hangs up his jacket in his locker and removes the harness that holds him in his wheelchair when he's traveling. He meets him in the hall between classes, eats lunch with him every day that their schedules coordinate, and hangs out with him during free period.

He doesn't receive a cent for his services - because they're not services. They're the outer manifestations of a deep friendship.

"No one's asked him to do this or forced him to do this. He just does it because he wants to," said David Royal, one of Rossetti's aides. "If he weren't doing these things, the staff would take care of them, but it's so much more natural this way. It's so much better that it's his friend."

Certainly, Rossetti lacks nothing in that department. "He loves people," Royal said. "I would say almost everyone here knows him."

And the reward for getting to know Todd is a grin that, even by journalistic attempts at objectivity, is nothing less than amazing.

Halfway through Rossetti's lunch, Laura Robie and Lolly Mielcarz, fellow seniors who've known Rossetti since second grade, stop by to say hello. Spotting them, Rossetti shouts with excitement and, if this is possible, smiles bigger than he smiled for Ames.

Last month, it was Robie and Mielcarz, along with Ames, who helped circulate a petition to let him graduate with his class. "We'd gone to school with him forever, and we thought he should be able to graduate with us," Robie said.

In addition, dozens of friends, fellow students and activists for people with disabilities sent letters to the school on Rossetti's behalf. When Mayes arrived for his meeting with Payne, he was carrying a file folder stuffed with letters, Payne said.

"He said he had never gotten so much communication about anything in all his years of teaching," she said.

Mayes said the correspondence had no influence on the school's decision.

But for Payne it was evidence that perhaps her son will land safely into the next phase of his life - that if just a few of the people who love him will act on that love, maybe he'll find the support he needs.

"I want people to see that he has the same dreams as everybody else," she said. "If people were more open-minded and assumed more responsibility, the sky could be the limit."

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(Sarah M. Earle can be reached at 224-5301, ext. 323, or by e-mail at searle@cmonitor.com.)

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