2 Young Pupils Show Chasm Among Parents of Disabled

Watching Jace Romanowicz scribble the word “we” or Jennifer Delgado reach out for her teacher’s hand, it is hard to imagine such simple gestures as the fruits of revolution.

Yet because both children are mentally retarded--Jace has Down’s syndrome and Jennifer a rare brain malformation--it took a wholesale shift in special education philosophy, coupled with their mothers’ tenacity, to land them where they are today.

A decade or so ago, Jace, 7, would have attended a school for the disabled instead of being included in a regular classroom of first-graders who are learning to read and write. Ten-year-old Jennifer, who attends a special education school where movement is emphasized, would have been institutionalized instead.

But a class-action suit filed on behalf of all 65,000 disabled students in the Los Angeles Unified School District has found that both of those gains fall short.

In a proposed out-of-court settlement, the district has agreed to integrate greater numbers of seriously disabled children--like Jace--into the district’s mainstream classrooms than the 170 currently attending those classes full time. At the other end of the spectrum, it has vowed to decrease its reliance on 18 separate special education schools, such as the one Jennifer and 4,400 others attend.

For Jace’s mother, Liz Spencer, the legal agreement does not go far enough toward streamlining the inclusion process for other parents.

“My own son’s situation is absolutely beyond perfect,” Spencer said. “I want other kids to have this.”

For Jennifer’s mother, it may go too far, threatening to deny children like her daughter the medical care and protection offered by the specialized schools.

“I would pull Jennifer out of school before I would put her in regular ed,” said Lisa Delgado. “It worries me.”

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The two women and their children are not direct adversaries--in fact they do not even know each other--but they reflect the current extremes in handling disabled students. Between them lies the complex chasm--of beliefs, of needs, of desires, of disabilities--that the district must span in order to reform special education.

That job is complicated by the sheer political force of inclusion, which in the last five years has grown beyond an educational alternative into a national movement that splits parents and advocates for disabled students into two groups: those who see adding the disabled to regular classes as one of several options and those who see it as the only option.

“Inclusion has created a tremendous schism in the disability community,” said Douglas Fuchs, a professor of special education at Vanderbilt University. The most rigid inclusion-minded parents believe that “the salvation of their kids rests on the elimination of all other placement options . . . that if special ed schools continue to exist, their kids would be the first placed back in them.”

In a series of hearings that begin Monday afternoon at district headquarters, Los Angeles Unified officials will sort through those issues as they debate how far to take inclusion in the nation’s second-largest school system.

And when they do, both Jace’s and Jennifer’s mothers will be there, using their children’s experiences to persuade district officials that parents should be allowed to make the final choice.

Here, then, are the tales of their two children.

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“When I took Jace to school this morning, all the kids were just crowding around him. . . . They said, ‘Jace is here! Jace is here!’ And I thought, ‘This is what it’s all about.’ ” --Liz Spencer.

Jace’s tenure in Los Angeles Unified began far less promisingly.

During his first foray into kindergarten at his neighborhood school, promised support services were lacking and the teacher seated Jace in the back row, where he became increasingly isolated. After several months of despair, Spencer reluctantly transferred Jace to a public preschool for the disabled. He began hiding under his desk and tests pegged him with the intelligence of a 1-year-old.

“I was told he was at the far end of retardation, that he would never understand me,” said Colette Vazquez, who began working then as Jace’s school aide.

It’s hard to fathom such dire predictions today as Jace and Vazquez sit together in his first-grade class, bantering in words and sign language. Spencer attributes the metamorphosis to a more successful second attempt at inclusion, which began last year when she found another Westside principal willing to give Jace a try.

This time Spencer lobbied successfully for a complete support network: a full-time aide to help Jace fit in and scheduled visits from a special education teacher and therapists for speech and motor skills. By year’s end, Jace, then 6, tested at the 5-year-old level.

But the greatest successes were the things that could not have been anticipated: The entire kindergarten class learned sign language to better communicate with Jace, who has both hearing and speech problems. He made two close friends. Half his class came to his birthday party.

When asked what he likes best about school, he smiles broadly and says, “My friends.”

A study on friendships made through inclusion conducted in Washington state found Jace’s social experience to be typical, especially among younger children.

“We did find sometimes kids were still isolated . . . and lonely at home,” said Ilene Schwartz, assistant professor of education at the University of Washington. “But what we didn’t ever see were negative interactions occurring in the classroom, any kind of teasing.”

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As encouraging as Jace’s experience has been, its rarity is underscored by his principal’s refusal to allow the school to be named in this newspaper. The campus already has a relatively large number of seriously disabled students--four in all--attending regular classes, compared with other schools in the district, and the principal fears that publicity would draw more attention than his staff could handle.

Jace’s day includes moments both touching and troubling.

He cannot yet read, so when it’s time for independent reading, he sits next to his friend Justin Spring. In a routine their teacher encourages, Jace clutches Justin’s finger and uses it to point to words in a book, which Justin then reads aloud.

Justin’s mother knows he is not learning much about reading in the process, but she figures he receives another lesson from Jace that’s just as important.

“I think it’s had a lot of benefits for Justin as far as accepting things that are different without question,” Nora Spring said.

In most inclusion programs, disabled children are placed with youngsters their own age--instead of being incorporated at their academic level--in order to foster age-appropriate social skills.

But their maturity level often lags too, which can be a vexing problem, especially in a large classroom. That is of particular concern to the Los Angeles teachers union, which believes that reducing class size is essential to making inclusion work.

“You’ve got a class of 30 kids [to educate] . . . and then you’ve got a kid who may never be able to keep up, but you’ve got to spend a lot of time on him to the detriment of the other students,” said union representative Joel Mattus.

In Jace’s case, the district has attempted to lessen the strain on his classroom by providing a full-time aide. Although such personal attention is expensive, an evaluation of Massachusetts’ programs by the Center for Special Education Finance found that accommodating disabled students in regular classrooms was usually less costly than maintaining the lower student-teacher ratio of separate special ed classes and schools.

The job of an aide is a challenging one. In addition to using sign language to convey the teacher’s instructions to Jace and modifying assignments to his level--giving him five spelling words instead of 25, for instance--Vazquez is charged with softening his impact on the rest of the class.

Layered on top of that is her ultimate goal: to make herself obsolete, to mold a situation that Jace can handle alone.

To that end, when Jace cuts in front of several classmates at the drinking fountain for the third time, Vazquez coaches the other children not to acquiesce.

“Cheater!” she shouts. “Let’s hear some peer pressure.”

Many of the severely disabled children in regular Los Angeles Unified classes have one-on-one aides for at least part of the day. And studies elsewhere have found that the success of mainstreaming depends greatly on the aide’s capability.

Yet these assistants rarely receive any training for the job. A parent group formed by Jace’s mother to critique the pending consent decree wants training to be guaranteed under the reforms.

At a recent meeting of the group, called Respect, parents traded aide horror stories. Aniko Klein has a son, 11, who was in regular classrooms for three years until a week into this school year, when he was suspended for sitting in front of the school naked, his aide at his side.

“Why didn’t his aide stop him?” Klein asked.

Inadequate training of teachers to accommodate disabled youngsters is another of Respect’s gripes. Currently, regular education teachers complete only one special education course, which is required to get a teaching credential.

The consent decree calls for providing in-service training and the teachers union is pushing for that to occur.

When Jace came to his class, Reifman found that basic teaching practices and common sense pulled him through the early weeks.

“Now I couldn’t imagine this class without Jace,” he said. “The kids really love him and it brings us together.”

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“Every time they do something, they talk to the child. . . . I like that because it’s what I do. They don’t assume that because she doesn’t speak, she can’t understand.”--Lisa Delgado.

It would be easy to underestimate Jennifer Delgado. She cannot express herself with words or motions. She cannot walk, has little control over her arm movements and wears diapers.

Progress is nearly imperceptible to an outsider.

It could be as simple as bearing some of her own weight as she is shifted from her wheelchair to the floor, or groping toward a computer touch pad several minutes after the teacher has asked her to choose a function.

“You have to be very patient,” said Eric Young, the special education teacher assigned to Jennifer and nine others at Perez Special Education Center on the Eastside.

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Although its student body has shrunk slightly because of the inclusion trend, Perez remains Los Angeles Unified’s largest special education school, with 440 students with disabilities ranging from mental retardation to physical problems such as paralysis.

It is better attended than similar schools elsewhere, experts say, because its surrounding community includes many lower-income Latino parents, who tend to favor protection over inclusion.

Lisa Delgado did not feel bound by such cultural traditions, however. When Jennifer was 3, Delgado sent her to Perez’s special education preschool each morning and a Headstart program for the nondisabled each afternoon.

But a year of seizures followed, leaving Jennifer with more brain damage and more physical limitations and, for her mother, ruling out the possibility of inclusion.

“I saw she could be safe here,” Delgado said of Perez. “Usually they handle everything. I’ll come back and they’ll say, ‘She had a seizure today, the nurse came.’ ”

During her school day, Jennifer often spends time hooked up to a breathing machine or strapped to a slanted pillow to relieve congestion. Otherwise, she is latched into a special chair that helps her sit up straight as she goes through one-on-one lessons in chewing food, moving her arms on command and identifying animal sounds.

Special education campuses nationwide have become increasingly populated by severely disabled children such as Jennifer in the last decade, as medical advances have extended their lives and as their peers with milder disabilities have moved to regular campuses.

These are the hardest children to mainstream for reasons both practical and philosophical. Even in districts that have phased out separate special education campuses altogether--such as San Diego Unified--these are the children most likely to be kept in separate classes at regular schools.

And when they have joined mainstream classes, teachers often have questioned how much they benefit.

A San Fernando Valley middle school teacher said she handed the quadriplegic student in her class a book and parked her near the door for easy evacuation in an emergency. “Is that an educational experience?” the teacher asked.

But the most disabled are not the only ones who attend schools like Perez. For instance, there are many Down’s syndrome children with abilities similar to Jace’s on such campuses in the district.

Their parents have chosen the special schools for their small class size and army of trained staff, including a full-time special education teacher and at least two aides for each classroom, as well as on-site medical and physical therapy and psychological counseling crews.

Some turn to Perez when their children become teenagers and find themselves relegated to the fringe of social life in regular schools. At the special education school, they can participate in a full range of activities--dances, sports, theatrical productions--with children who do not regard them as different.

And those parents are ready to fight for their right to keep their children separate, too. After a media report on the consent decree erroneously predicted closure of all 18 such campuses, Delgado and other Perez parents demanded a meeting with the school district’s attorney on the case.

Now Perez’s principal, Larry Birtja, is preparing his own defense plan. He wants to start a regular preschool on the site later this year to make it easier for disabled and nondisabled children to mingle. He hopes to expand gradually into an entire elementary school populated largely by siblings of Perez students, who are less likely to be intimidated by the disabled.

“There is a sense of pride about what we do here,” Birtja said. “People here are afraid that what we do . . . will not be validated just because we are a separate site.”

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Special Education Hearings

The Los Angeles Board of Education begins public hearings on special education reform Monday. Speakers must sign up ahead of time and limit their comments to three minutes.

* Monday, 1 to 5 p.m.

L.A. Unified School District headquarters board room

450 N. Grand Ave.

Los Angeles

* Tuesday, 5 to 9 p.m.

Birmingham High School auditorium

17000 Haynes St.

Van Nuys

* Wednesday, 5 to 9 p.m.

Banneker Special Education Center

14024 S. San Pedro St.

Los Angeles

For more information, contact Steven Mark in the district’s special education division: (213) 625-6703.