Photos by Benjamin Tice Smith
Jeanne Oberti speeds the family's white minivan past a Gloucester Township yellow school bus, navigating the twisting two-lane road to turn at the stand selling Jersey tomatoes. Eventually, she pulls up in front of the stucco building with three white crosses rising from the manicured grass and unloads her four children.
Rafael, her oldest, heaves his backpack over his shoulder and walks down the hall to Arlene Burnett's 4th-grade class - one in a flurry of maroon V-neck sweaters and dark pants. This Monday morning, Rafael traces his name in cursive, then slowly prints the numbers and letters that tell where he lives. An aide in his classroom at Ambassador Christian Academy reminds him to cross his t's and dot his i's.
It's a pretty good morning for 11-year-old Rafael. When he started 1st grade here in 1992, he spent the first two weeks sitting in a chair, jacket on, clutching his backpack. The staff let him sit until he was ready.
What's perhaps most surprising about Rafael's morning is that he's at this school at all. Things weren't supposed to turn out this way.
Five years ago, Jeanne and Carlos Oberti filed suit against their school district in Clementon. They asked a state administrative-law judge to order the district to educate Rafael, who has Down syndrome, in a regular classroom in their neighborhood school rather than in a special-education class. The judge ruled against the Obertis, but then--to the astonishment of many--a U.S. District Court took their side. A year later, the U.S. Court of Appeals for the 3rd Circuit concurred.
"Inclusion is a right, not a privilege for a select few," the district court judge wrote in 1992. Those words--perhaps the strongest ever penned by a judge on behalf of educating disabled children in regular environments--threw a national spotlight on Clementon and the Obertis. Television camera crews began descending on the small town and its 500-student elementary school district, and inclusion advocates nationwide adopted the judge's phrase in advancing their cause.
Throughout the legal battle, the district argued that Rafael was too severely disabled and too disruptive to educate in the regular classroom. The Obertis said the district never provided their son with the services and support he needed. Rafael's classroom behavior--which they maintained Clementon grossly exaggerated--resulted from deficiencies in the educational program, they contended. The courts ultimately agreed.
While both federal courts ordered the school to go back and develop a more inclusive plan for Rafael, neither told Clementon exactly what that meant. By the time the two parties sat down to talk it over, the Obertis decided there were too many hard feelings to negotiate and opted to keep Rafael at the Christian school.
The Obertis' story--then and now--plays out against the backdrop of a nation grappling with increasingly blurred lines between "regular" and "special" education and an even blurrier debate over who has responsibility for each. It has unfolded as the disability-rights movement has gained steam and ideas about what children and adults with disabilities can, or should do, have been evolving.
It wades into the prickly and emotional issues of expectations, balance, and control. Whose expectations should govern what happens in a child's education? Where is the balance struck between the rights of one and of the many? Who defines what is best for a child?
Two "For Sale" signs poke out of the front lawn of the Oberti's two-story home, which sits on one of the biggest lots on the block. A wooden fence encircles the back yard, which, over the nine years the family has lived here, Carlos Oberti has filled with a mini-basketball court, an above-ground swimming pool, and a car park.
Since the Obertis decided to send their children--Rafael; Christopher, 9; Stephanie, 7; and Gabrielle, 6--to the Ambassador school a half-hour away in Glassboro, they have largely retreated from life in Clementon. Not that they ever felt too comfortable here to begin with.
"We live in Clementon, but we're not of Clementon," explains Jeanne, who is finishing her college degree in music education. Carlos, a native of Ecuador, markets licorice extract abroad for a company in nearby Camden. He calls Clementon, a working-class community of 5,600 residents, "a small, nothing town."
The Obertis plan to move to Glassboro to be closer to their children's school. There isn't much keeping them here anymore. The children used to play sports-- Rafael joined a T-ball league--but when the family received a flier suggesting he join a league just for children with disabilities, they decided to drop out altogether. Besides, Carlos says, family is where everything starts and finishes.
On a Sunday afternoon after church, Rafael lies on the bed next to his father, his arms tucked beneath his head on the pillow, just like Carlos. His brothers and sisters are sprawled around them watching football on TV. Rafael loves sports--basketball, soccer, hockey--and sings in his church's junior choir. He doesn't like math. He used to have his own room, but since Carlos' parents moved in from Ecuador, he's had to share his room with Christopher. They take turns sleeping on the top bunk.
Rafael is responsible for, among other things, dressing himself, making his bed, helping to set and clear the table, and checking little Gabrielle's math homework with a calculator after doing his own.
But all the children are expected to look out for each other, particularly for Rafael. Which is why the Obertis are willing to pay roughly $8,000 a year for the four to attend the same school.
When Rafael eats his bagel and cream cheese for breakfast and it smears on his face, Christopher corrects him: "Rafael, wipe your mouth off. And eat right. Don't tear off the food. Do it like this," as he bites gingerly into his bagel. Stephanie laces Rafael's hiking boots before a trip to the corner convenience store. On the way back, when Christopher races Stephanie home, Rafael takes off behind them. When he starts to walk in the street, Stephanie tells him to move. He does. When the children come in from playing a game of touch football, Carlos asks Christopher if Rafael had his jacket on. He doesn't know. Carlos admonishes: "It's your job to know. He's your brother."
Carlos calls the children in from their game. He doesn't like them playing with the neighborhood kids too much. Too many of their families don't have "good values," he says. And, Rafael has been teased. So, until they move, much of the children's free time is spent inside the house, or behind the wooden fence in the back yard, or after being transported somewhere else in the white minivan.
Jeanne describes her husband as tenacious. During a phone call to Rafael's doctor, he refuses to take no for an answer: Find an appointment because Rafael needs to be seen right away. He gets one. His standards are high. Before the children leave for school, he has their school sweaters dabbed with tape, smooths their hair, and wipes their hands and faces until they glow. When Rafael's bottom lip falls slightly from time to time, Carlos taps his son's face lightly, and he clamps his jaw shut. When Rafael sings in choir, Carlos cues him from the pew, signaling to sing louder or pay attention to the director. He softly touches Rafael's hands when they rest on the pew before him, a signal to clasp them together in prayer.
Although Rafael is not at Clementon Elementary, the Obertis say things have worked out for the best. In the end, they won, they say, for families following in their footsteps.
"We did feel we were supporting 'the cause,"' Jeanne says. "There was some peer pressure from other parents of kids with disabilities to put Rafael back in Clementon. We wanted to finish what we'd started, but we came up against the realization that we had to put our child first. It's a compromise. We're not heroes."
Flipping through one of the family's many photo albums--sandwiched between shots of the children at the beach and Rafael reclining on a chaise lounge on a business trip to Latin America with his father--is one that takes up almost a page by itself. It shows the four smiling children in front of a large hand-lettered sign hanging from their front porch: "U.S. 3rd Circuit Court. Rafael Oberti vs. Clementon Elementary. We won ... AGAIN."
The Obertis are self-described idealists, risk-takers. And they have learned to be wary from the time Rafael was born, when they were told they should put him up for adoption and try again. Jeanne recalls that, years ago, a speech therapist wanted Rafael to learn to use a speech board, a mechanism that allows nonverbal children to communicate by pressing letter keys.
"I said, 'Wait a minute. You're supposed to work on articulation, not say my child won't ever speak,"' she says. "It really put us on our toes. Low expectations are a very, very dangerous thing."
They were also told Rafael probably would never read, which he does now, albeit at the kindergarten or 1st-grade level, his teacher says.
They tell the bicycle story. Rafael had training wheels on his. They took Christopher's off, and he rode away. They didn't take Rafael's off. Months later, Rafael picked up his brother's bike and took off. "I was worried for nothing, that he wouldn't do it," Carlos says. "Then I realized, of course he'll do it, just a little more slowly."
None of this has been easy. When Rafael was born, Carlos struggled for three months to accept his son's condition.
"I couldn't deal with it at all, but I finally accepted it. And I made a promise to myself," he says, pounding his fist into the palm of his other hand. "I promised to help Rafael succeed at anything he decided to do."
On a blustery Sunday afternoon, the muted shouts of children playing touch football on sleepy California Street waft inside the Obertis' home.
Carlos sits on the carpeted floor playing "Connect Four" in the front hall with Rafael and the other kids, hemmed in by wooden bookshelves holding neatly stacked toys and books. Christopher is playing against Rafael.
Christopher: "Somebody help Rafael."
Carlos: "He doesn't need help." Rafael loses after a few turns.
Christopher: "I told you he needs help."
In a rematch, Carlos urges Rafael on in a voice that lilts with the Spanish accent of his native Ecuador. "You have to think before you put your piece in." Rafael hesitates, then places his red piece. "Don't let him get four, Rafael."
Carlos stops the game and focuses his dark eyes on Rafael, his arm draped around his son's back. "Think, Rafael. Where are there three pieces consecutively?" Rafael makes his move, blocking his brother's strategy. But he winds up losing the game.
Court documents show that in 1989, when Rafael was 5 years old, he had an IQ of about 59 and limited speech skills. As far as New Jersey was concerned, that made him "educable mentally retarded," or EMR. He had been in special-education programs since infancy. When it came time for him to enroll in kindergarten, the Obertis approached Clementon and asked that he be placed in a regular classroom.
Reading through the court records in the case, you get the feeling that the two sides are speaking in different languages. One side looked at the glass and saw it half-full, the other half-empty.
Today, the Obertis say they knew traditional special education was not going to take their son where they wanted him to go. They had seen other children like Rafael, products of that system, wind up in sheltered workshops or group homes. And they didn't want any part of it.
"I didn't know at that point that inclusion was so new to the district," Jeanne says."I didn't know the ramifications of what we were proposing. All I knew was that was the atmosphere I wanted my child in."
The Obertis don't put much stock in IQ or other standardized tests; they believe that special educators rely too heavily on such measures to decide where to school children like Rafael. They argue that the federal Individuals with Disabilities Education Act requires the development of individualized-education plans for each disabled student, not the generation of a label like "multiply handicapped," which educators then use to "ship children off to the nearest MH program."
Rafael was assigned to Melinda Reardon's morning developmental kindergarten class, which was designed to help children lacking in skills prepare for standard kindergarten. Reardon and an aide taught Rafael and 11 other students in a classroom divided by a set of bookshelves from a regular kindergarten class. Rafael spent his afternoons in a special-education class in a neighboring district.
Reardon, who had been at the school 14 years, later testified that she was concerned she spent too much time with Rafael and that the other children were taught at a lower level because of him. Rafael would throw pencils and crayons, crawl under desks, spit, scream, and cry, she said. On the playground one day, Reardon said, Rafael choked another student.
Speech therapist Karen Lightman testified that Rafael slapped her and had various outbursts during their sessions. In her opinion, Rafael needed to be in a special-education class where he could receive more extensive speech therapy than Clementon could offer.
"He had difficulty following directions and expressing his wants and needs, and that was my big concern," Lightman testified.
To complicate matters, Rafael was not fully toilet trained. On the first day of school, Reardon said she received a note from the Obertis asking her to take him to the bathroom every 15 minutes.
"The parents [also] requested that I send home a page of every single assignment that I did, so they could reinforce it, which was not a reasonable request," Reardon said.
She eventually got another aide to work with Rafael, but it didn't seem to help much, both Reardon and the Obertis testified.
Peggy McDevit, Clementon's special-education coordinator and a school psychologist, testified that she didn't oppose including a disabled child in the regular classroom, but she felt that Rafael wasn't prepared.
"I feel strongly that at some point in time it might be a beneficial experience for him, but at this time it would not be," she testified. McDevit felt Rafael was frustrated in Reardon's class, even with the new aide.
"The frustration came because I think that the expectations of Mr. and Mrs. Oberti were clearly that he would be exposed to everything in the kindergarten program," McDevit testified. "The frustration that I saw in Rafael was in his own, perhaps, perception that he was not able to do many of the things that were going on in the classroom."
Carlos, clearly agitated, blames the conflict on Clementon's "mediocrity."
The Obertis say they were thrilled with Rafael's progress in the class. For example, he learned to recognize 16 letters of the alphabet.
"Of course, the other kids knew all 26, but I said look at the progress, where the school said, 'Oh, we failed, so he's not in the right place,"' Jeanne says. "They kept saying he's not ready. In their minds, I don't think Rafael would ever be 'ready."'
Based on Rafael's year in Reardon's class, Clementon proposed that he be schooled in a special-education kindergarten class for the 1990-91 school year. Clementon didn't have a program geared toward children with Rafael's classification at the time--EMR--so they wanted to bus him to one in another district. The Obertis rejected that idea because it was a separate classroom, and most students stayed there four years.
In August 1990, the parents and district agreed that Rafael would be sent to a new program for children classified as multiply handicapped just starting up in the Winslow Township school district, 45 minutes away from the Obertis' home. The agreement stipulated that Rafael would be mainstreamed with nondisabled students in some of his Winslow classes, including music. The promised mainstreaming never materialized. Rafael sat in the cafeteria with other students, but he wasn't allowed to leave his special-education class table.
Winslow's speech therapist later testified that Rafael had progressed from using just a few words at the beginning of the year to using three- and four-word sentences. But the Obertis said Rafael had started wetting his bed again and, for the first time, was saying he didn't want to go to school.
The Winslow experience sent the Obertis to Frank Laski, a noted disability-rights lawyer, and his colleague Penelope Boyd of the Public Interest Law Center of Philadelphia. By February, they were facing off against Clementon before a state administrative-law judge in what would prove to be only the first in a long series of court maneuvers. Clementon won.
"This is not to say that the time may not come when mainstreaming in Winslow Township and/or Clementon will not be called for," Judge Joseph Lavery wrote on March 8, 1991. "The present record only discloses that now is not such a time." That same day, the Obertis decided to appeal to the federal courts. It was then, Clementon Superintendent Bill Sherman says, that he and the Obertis stopped talking, and the lawyers started.
As the lawyers began to build their cases, the Obertis enrolled Rafael in Clementon's summer program, open to all the town's students in grades K-6. Karen Albanese taught the 38-student class with two aides.
Rafael crawled under tables, lay in the middle of the classroom and cried, kicked an aide, and poked children with a pencil, Albanese testified. On a trip to the Campbell Soup Museum in Camden, she testified that she had to restrain him and that he refused to stay with the group.
"At one point, he literally pulled me across the room," Albanese testified. "At that point, he broke away from me and then started to run around that section of the museum. ... And I'm holding him and trying to describe the tureens to the children. After a point, I couldn't hold him anymore.... I was sitting with Rafael in the chair, and he was kicking his legs and flailing his arms. I was trying to hold him and say, 'Rafael I need you to calm down now.' "
After the museum trip, Albanese asked Jeanne Oberti to come on field trips, but Rafael still sometimes tried to run away.
In the fall of 1991, Clementon again recommended the program in Winslow for Rafael. Instead, the Obertis enrolled their son at a Catholic school in Stratford, N.J. Rafael spent roughly two months in Patricia Caponi's class of nine learning-disabled students, also attending a few classes with nondisabled students. Caponi testified that when he was frustrated, Rafael hit other students, yelled, and tried to run out of the school.
By October's end, the school had asked Rafael to leave. Jeanne Oberti spent the remainder of 1991 home-schooling her son.
By the time the Obertis' lawyers were ready to go to court, they had enough depositions, evaluations, videotapes, and expert testimony to fill four drawers of a file cabinet in the law center's office. For three days in May, every detail of Rafael's school life was raked through with a fine-toothed comb in a Camden courtroom. The Obertis' lawyers flew in a nationally known inclusion expert from Wisconsin and called to the stand two other special educators from New Jersey and Temple University in Philadelphia. Thomas Murphy, who was the district's lawyer, offered up a special-education professor from nearby Glassboro State College. Rafael, almost 8 years old, spent most of his time during the trial coloring in the courtroom's front row.
On Aug. 17, 1992, Chief Judge John F. Gerry ruled for the Obertis. The next day, Superintendent Sherman's phone started ringing off the hook with reporters and educators from around the country.
"It all got interpreted as some kind of mandate, pro or con inclusion," Sherman says today. "To me, it was never that. It was one child. It just took on a life of its own."
He feels that Clementon was singled out "to make a point" in part because of its small size and relatively limited resources. (The district has a $2.9 million annual budget.)
"I knew the judge couldn't imagine our little school district of 500 kids. So what are the program options like here?" Sherman says, shaking his head. "I know they didn't understand that."
Sherman says the Obertis had "very high expectations" for Rafael and for the changes Clementon should have made to accommodate him. "I felt like they were asking for changes that were ahead of the game," he says. And the advocates do not necessarily disagree.
"All of this was really just beginning in New Jersey," says Joanne McKeown, a mother of a child with Down syndrome and a statewide inclusion advocate who testified for the Obertis in the case. "I think Clementon had the bad luck to choose the wrong family" to take on.
On May 28, 1993, the federal appeals court affirmed the lower court's ruling. The Oberti case showed up on the "Today" show. Rafael was featured in a cover story on inclusion in U.S. News & World Report titled "Separate and Unequal."
Murphy wanted to take the case to the U.S. Supreme Court. Sherman did not. So Murphy resigned. Today, Murphy says Sherman sold out on his principles for "political correctness." Sherman says he realized the appeals court ruling was a good one and he wanted the case to end.
The summer after the appeals court decision, the Obertis sat down with Clementon officials, but found no common ground. The district wanted to re-evaluate Rafael and offered to have a team outside Clementon do it. But ultimately, the Obertis decided there was too much bad blood between them and Clementon, and Rafael was progressing at the Christian school. So they walked away. They have not returned since.
Ambassador decided to take a chance. Rafael is one of nine students, including his brother, in Arlene Burnett's class there. An aide, Jeanie Cook, works primarily with Rafael and another disabled student. Depending on the subject, Rafael sits in the back row of desks with the other students or at a small table pushed against the wall. A few times a week, he receives speech therapy and help in mathematics and reading from the Gloucester County Special School District, which provides itinerant teachers to serve students with disabilities in the county's nonpublic schools.
While the other students practice their spelling words for a quiz--"successful," "bargain"--Rafael works on one of the three functional words his teacher plans for him to learn each quarter. He will spend the next three or four weeks on today's word, "exit."
"What does that word mean? Show me the exit," Burnett asks while Cook floats among the other students. Rafael points to the classroom door. "What do we do when we exit? Show me." Rafael walks out the door, then points, after Burnett asks him, to the exit signs at either end of the hallway. "What do the signs say?" "Sign." "No. Exit." "Oh yeah. Exit," he grins. Rafael returns to the table to trace the word exit and print his own sentence: Exit means to go out. He quietly draws a picture of himself and an exit.
It does not always go so smoothly. During a math lesson, while others stand at the chalkboard to divide 97 by 60 or 74 by 20, Rafael uses a calculator to add two-digit figures. He gets frustrated and lays his head on Cook's shoulder. "It's hard," he complains. "Come on, Rafael, you can do it," she urges him. He puts his head on the table. Burnett comes over. "Come on, Rafael. Easy as cake, right?" Rafael starts to cry. Cook brings over a box of tissues. After Rafael spends a few minutes playing with a tissue, Cook refocuses him on his math. "Enter 15, ready?" Rafael sees he did the problem correctly. "All right," he exclaims, making the thumbs-up sign. Rafael is a master of slang.
Some children in Rafael's class have been with him since 1st grade. Some are unfazed when he starts to hum in class, or when he plays with his pens and pencils in the air, clearly absorbed in a universe of his own creation. Others are not. For now, his language skills make it difficult to have meaningful conversations with others. But at lunch, the others make room for Rafael when they start to practice a dance step, and Rafael follows, half a beat behind. At recess, in the tree-lined meadow behind the school, he hangs off to the side with a few other boys while the girls commandeer the soccer ball.
Ambassador prides itself on its family environment--the school has only 78 children in pre-kindergarten through 6th grade--and strong parent involvement. While there are other students in the school with various learning problems, Rafael is the most severely disabled student the school has ever had. But Ambassador has not marketed itself as a "special needs" school.
"This wasn't a crusade or a policy issue for us," Principal Wellington Watts says. "It was just, here's a family with a need who came looking for help."
They accepted Rafael because they knew the Obertis "would bend over backward to make this work," he says. The family has organized in-service training for Rafael's teachers and linked the school with a special-education consultant to develop Rafael's curriculum. The school has given teachers release time to attend inclusion conferences, hired an aide, and met as a group with the Obertis at least once a month to discuss Rafael's program.
But even here, some parents have expressed concern over Rafael's presence. One family pulled their daughter from the school because "theydidn't feel Rafael had developed the social graces they wanted their child exposed to," Watts says. Another approached the principal because they were worried their son was not receiving enough attention in class. That worry, Watts says, has since diminished.
Watts has called Rafael's father twice. Once, because Rafael refused to cooperate with the teacher. And again a few weeks ago because he put his jacket on and threatened to leave the school. Carlos arrived, spanked Rafael, and the problems were resolved.
Rafael's teachers say he has been a challenge, but a rewarding one. They have spent hours drawing up separate lesson plans for him. They have coordinated, and, at times, disagreed with the Obertis.
"Sometimes, I just had to say to them flat out, 'This isn't going to work,"' says Sue Sawyer, Rafael's 2nd-grade teacher. "They started to trust me. So they let me take over."
The question remains whether Rafael is in the right place.
"I don't know if his skills would be higher if he were in a special-education class. Some would say yes," says Burnett, who has two children of her own in special-education classes in the public schools.
"Part of me says, are they denying reality?" says Sancha Hughes, a Gloucester County speech therapist who works with Rafael. "I know in their hearts they believe this is best for Rafael, but I'm not sure that it is."
For Watts, who used to teach in the public schools, the bottom line on inclusion is attitude.
"Anytime something is mandated, people do it because they have to," he says. "But for inclusion to work, it has to be because you want it. And you can't mandate attitude."
Most people in town have forgotten about the Oberti case, if they ever knew about it at all. On a blustery fall day, parents gathered outside the fire station for a Halloween costume parade. One mother said she had heard about the case and thought the family won. Others thought they heard the family had moved away some time ago.
In any case, inclusion is not on the tip of everyone's tongue here. But for Barbara Cremean, a mother of two girls at Clementon Elementary--one of whom was in the same classroom as Rafael five years ago--the memory is still vivid.
"I just remember thinking, why is he here? He isn't ready for this school," she says. "And Clementon wasn't ready for him either."
Talking with both sides in this case, it is clear that the feelings run deep. The local PTA president, teachers' union representative, and Rafael's public school teachers all declined to be interviewed for this story. Some school board members, former and current, also refused.
Is it because they fear future litigation from the Obertis? Because they feel manipulated by the district's lawyer? Because they are tired of answering to the press? Or because they just want to move on? Superintendent Sherman says it is the last.
Today, Murphy, the district's former lawyer, is out of the school-law business altogether. But he still argues that inclusion converts the regular classroom into a special-education class for all the students.
"I wouldn't want my [nondisabled] child in that class," he says. "This is the guts of the whole issue, and judges don't want to hear that. They want to see it as civil rights. Parents don't want their children stigmatized, and they don't want that stigma for themselves."
For his part, Superintendent Sherman maintains that he never opposed inclusion. He feels, as he did then, that it is a question of degree and timing for individual students. He does not share some of Murphy's concerns.
"My fear is that some districts have implemented inclusionary programs out of a fear of litigation, and possibly those programs are not best for the child," Sherman says, smoothing the wrinkled and heavily highlighted copy of the appeals court decision he keeps at his desk. "Personally, I've never spent so much time on one student, one situation in my life. I don't even know what winning means in this case anymore."
No irate parents ever showed up at school board meetings to protest the behavior Clementon outlined in its legal case, but Sherman says that four or five parents approached him with concerns about Rafael.
To Stephen Leibrand, who had served on the school board for nearly a decade until last year, the case meant setting limits.
"I saw this whole thing as maybe setting precedent for going too far," he says. "School districts are afraid to say no. And we weren't."
The bottom line is that in 1989 terms, Sherman says, "we felt we were being pioneers" by agreeing to have Rafael in the regular classroom. The district had never before even considered placing a child with Rafael's classification there. So where Clementon was patting itself on the back for going so far, the legal advocates saw that the letter of the law entitled Rafael to much more.
It's difficult to gauge what practical impact the Oberti case has had on the Clementon schools. Parents haven't been lining up to demand that their children be educated in the regular classroom in the wake of it, Sherman says. And looking at special-education placement data from 1989 and 1995, those educated within Clementon's walls are still predominantly students with learning disabilities, and those outside have more complex problems.
Though New Jersey ranks 48th in the nation for including disabled children in the regular classroom, there are some changes afoot, sparked in part by the Oberti case. Last spring, the state board of education revamped its rules on inclusion to incorporate the Oberti ruling. And a state task force is looking to rebuild the state's school-funding system, which for now gives districts more fiscal incentives to ship students out rather than keep them in regular classes in their neighborhood schools. But politically, advocates say, inclusion remains a hot potato here.
And some are threatened by what they think the Oberti case represents. Parents like Terry Bair fear that special classes and schools will eventually be shut down as pressure mounts to mainstream children with disabilities.
For three years, Bair's 11-year-old daughter, Elizabeth, who has Down syndrome, has attended Kingsway Learning Center, a private school in Haddonfield, N.J. The local public school district pays her $21,000 tuition. Bair thinks that Elizabeth receives the maximum attention and special instruction at Kingsway and that her daughter would feel overwhelmed in the regular classroom in her neighborhood school. Bair says she does not oppose inclusion, she just wants to make sure parents have choices.
"I think most teachers are overwhelmed with the children they already have in their classrooms without special-needs children being added," she says. "The bottom line to me is, are they going to be resentful that they are being asked to teach 'these kids?' "
Things weren't supposed to turn out this way. Rafael is not at Clementon. But, for now, Rafael is where his parents want him. Legally, if they decided tomorrow to send him back to Clementon, the school would have to devise a plan to serve him. But it won't likely come to that.
If the Obertis move to another district, they likely will have another battle on their hands, advocates say.
And Ambassador, for its part, will not grow beyond the 8th grade by the time Rafael reaches it.
"I don't know where the future will be for Rafael. We've been constants in his life," Watts pauses. "I don't know if there's another school that would attempt what we've done. It's going to be a big bridge to cross ..." his voice trails off.
The Obertis' long-term vision for Rafael is that he be surrounded and supported by a circle of family and friends, not people paid to care for him. That he develop as an individual, like his brothers and sisters, with his own strengths and weaknesses. Maybe he will live on his own, start his own family. Maybe he will live with his brother. They aren't sure. And they aren't willing to place any limits on him.
"Life can hold something much bigger than my hopes for him," Carlos says. "I can't tell you my son will be a mechanic or an office manager or a librarian. I'm not going to follow one inch of the paths already set."
At the Laurel Hill Bible Church, sandwiched between a Sound Rite record store and a strip mall, Rafael runs his hand across his father's freshly shaved face, tracing the lines of his jaw and throat. His hand eventually drops onto his father's leg. Carlos grasps his son's hand and tucks it into his, using the other hand to trace the words in the hymn book from which the congregation sings.
Rafael gently nudges his father's hand aside and points to the words himself, his own voice, softly, half a beat behind, joining the others.
Vol. 15, Issue 17