Parents at Cedar Lane are used to fighting for their kids.
The Howard County school for severely disabled children is a haven for students such as Ian Joyce: 18 years old, 110 pounds, blind, unable to speak or move by himself and occasionally twitching involuntarily. He has Batten disease, a hereditary, degenerative brain disorder.
Ian's father, Michael Joyce, has testified on Capitol Hill for more funding to find a cure; he has faced down politicians and PhDs. On a recent morning, Joyce and about two dozen other parents were at Cedar Lane to wage yet another battle: to make sure the school's state-of-the-art, $10.9 million building gets built.
The school is caught in the middle of a statewide debate over the pros and cons of including disabled students in general education classrooms. After being criticized by the U.S. Office of Special Education Programs for its track record on "inclusion," Maryland has begun to pressure local school districts to increase the amount of time that disabled students spend in class with their non-disabled peers. And that puts Cedar Lane and other "segregated" schools in jeopardy -- particularly when they seek funding for pricey new facilities in tight budget years.
Now, state money for the building is on hold. On Tuesday, State Superintendent of Schools Nancy S. Grasmick and members of her staff spent nearly two hours touring the campus. Cedar Lane Principal Nicholas P. Girardi said after the visit that he was "guardedly optimistic" about the prospects for a new building. If all goes well, he said, the school could become a national model for educating students with disabilities.
Still, a final decision is not expected for a few weeks. Hanging in the air is a question that elicits impassioned arguments from parents and goes to the core of the debate: How far should inclusion go?
Enrollment at Cedar Lane is about 115, but the intensity of the students' needs has strained the existing building. Teachers have to change students' diapers in classrooms. There are no bathrooms tailored to disabled users, even though 70 percent of the students are in wheelchairs.
Parents and staff were ecstatic in 1999 when the Howard County school board approved a renovation of the building. But developers soon realized that it would cost almost as much to upgrade the 23-year-old school as it would to build a new, larger one. State officials had approved the renovations but not a new building, so the school sent a letter to inform them of the change in plans.
Unfortunately for Cedar Lane, the timing was poor. A federal report released in 2001 said the state was doing a poor job of making sure children with disabilities were placed in the least-restrictive environment possible. Federal guidelines require 80 percent of students with disabilities to be in regular classrooms for at least 80 percent of the school day. In 2000, only 63 percent of Maryland's students met that standard. Local school districts were ordered to reassess their special education programs and student placements.
About three weeks ago, Cedar Lane parents received an alarming letter from the county school system: The state was no longer approving segregated facilities such as Cedar Lane. The school system was convening a committee to look at other ways of serving students with multiple disabilities.
Cedar Lane students account for less than 1 percent of county schools' disabled enrollment, and parents worried that the school was becoming a scapegoat for larger problems in special education in Howard and across Maryland. Instead of looking forward to a new building -- the county had spent $700,000 on planning and design, and construction was supposed to begin in the spring -- they began to wonder whether the school has a future.
Michael Joyce can't imagine Ian in a regular classroom. Ian's abilities have degenerated significantly over 12 years, though every now and then there is a tiny spark. On a recent morning, he stopped moaning when his instructional aide, Michele Miser, patted him on the chest. Miser took it as a good sign.
Miser has spent five years with Ian. She worked with him and his identical twin -- who died last year -- when they were in middle school classes. When they graduated to high school, she decided to move with them.
That continuity is lost for disabled students in inclusive settings, Girardi said. Often, parents who send their children to regular schools become frustrated during the transitions from elementary to middle school or middle to high school, he said. The teachers change. The assistants who provide one-on-one attention change. And perhaps most importantly, the children change, and parents find themselves fighting for their children to be accepted all over again.
Sue Dotson of Columbia has heard all this before. Every time her 11-year-old son Matthew is evaluated, the conclusion is the same: Send him to Cedar Lane. Each time, Dotson refuses.
Matthew has cerebral palsy and severe mental retardation. He cannot communicate verbally, and his hands are too weak to press the picture symbols on his DynaVox, a laptop computer on his wheelchair. His goal for the year is to recognize the letters A through L.
Still, Matthew sits through almost all the normal sixth-grade classes at Wilde Lake Middle School, from earth science to language arts. He changes classes every period. He has a locker.
"We started this battle when [Matt] was a baby because we didn't want him to go to a child center," Dotson said. "I wasn't schooled in what inclusion was or wasn't. I just knew he was a kid, and he should be with other kids."
So far, she said, it seems to be working. In science class Tuesday, Matthew held on to a piece of igneous rock as the rest of the class learned about erosion. When the class split into small groups, the teacher assigned two girls to work with him. Their report was on gravity. Matthew's job was to drop the rock as a demonstration.
"Thank you, Matt," one of the girls said after the presentation, reaching for his hand. They turned in the report with all three of their names on the paper.
Advocates of inclusion point to moments like that as proof that it can work. And although some acknowledge a need for schools such as Cedar Lane, they say separate schooling should not be the goal.
"I want to say: 'The school system has provided an opportunity for your child to be [in a regular school]. Let's consider it,' " said Kelli Nelson, director of the Special Education Leadership Project, a Maryland-based group that advocates inclusion. "And that's what doesn't exist now."
Others say that given the option, they would still pick Cedar Lane. Sending their children there, they say, was not a last resort but an educated decision.
"What purpose does it serve to sit in classes like math or science?" Highland resident Gail Benson said of her 16-year-old daughter, Heather, whose disabilities include severe mental retardation. "What is she going to get out of that? . . . I made the choice."