Ricki Sabia began volunteering to help children with disabilities when she was in high school on Long Island. She went to college at Georgetown University and law school at the University of Maryland. When her second son, Stephen, was born in 1992 with Down syndrome, her youthful interest became a major focus of her life. She tried to do what she could to improve services for children with disabilities in Montgomery County, where she lived with Stephen; her older son, David; and her husband, Peter, a cardiologist.
It was often a struggleand led her to appreciate an unexpected ally, the federal No Child Left Behind law.
NCLB was not very popular with educators, particularly those whose schools were threatened with unattractive labels if their special education students did not reach the annual achievement targets under the law. But for Sabia, now associate director of the National Down Syndrome Society Public Policy Center, and other parents, the law was an effective tool precisely because it forced educators to try to do difficult things that, before the law, they could easily let slide. NCLB slaps a "needs improvement" label on a school, and forces it to let students transfer and get them special tutoring if any of its student subgroups, including low-income children or children with disabilities, do not improve at the rate prescribed by the law and state authorities.
No child with a disability is a typical case. They are all different. The same goes for their parents. They have their own ways of making sure their children get a proper and useful education, and they have differing views of No Child Left Behind. So although there are limits to what we can learn from Sabia's story, I think it is worth telling because I so rarely address the special education issues that are vital to many parents. Also, Sabia has an interesting perspective on the frequent complaint that No Child Left Behind is an unnecessary and disruptive intrusion into the educational policies of states and school districts.
Sabia said her first experience dealing with the Montgomery County public schools came when she enrolled Stephen in a special program for infants and toddlers when he was 7 months old. "It became immediately apparent that MCPS was a bureaucratic maze that would challenge all my skills and take up much of my time and energy to navigate," she said.
If I had a dollar for every time the parent of a disabled child has said that to me about their first brush with the public schools, I could buy myself a decent suit.
"Our biggest battles with MCPS came when we wanted to have Stephen included in regular education classes at his neighborhood school," Sabia said. They ultimately succeeded without having to resort to the administrative appeals or lawsuits that ensnare other parents, "but it was a struggle to convince the school to take him and get MCPS to provide the aide support he needed, both of which he had a legal right to under the Individuals with Disabilities Education Act [IDEA]," she said.
Once Stephen started at Cloverly Elementary School in Silver Spring, she said, "his considerable charm, as well as appropriate aide support, won over the hearts and minds of the staff and students. He has always had a teacher request to have him in his or her class." The transition to Briggs Chaney Middle School, where Stephen is a seventh grader, also went well, she said.
When No Child Left Behind took effect, it had little impact on Sabia or her son because he already had access to regular classes and highly qualified teachers with high expectations. "However," Sabia said, "I recognized that NCLB would institutionalize a process that would promote all these things for students with disabilities, whether or not their parents were in the position to advocate for them through IDEA."
"This is critically important," she said. "People always treated Stephen's academic success as evidence that he is extraordinary for a child with DS instead of recognizing that he is an ordinary child with DS -- except in our eyes -- who has had extraordinary opportunities to maximize his potential. The opportunities he has had will hopefully become commonplace under NCLB and then people will see that many kids with DS and other significant disabilities can learn and achieve much more than previously believed.
"At national conferences I have seen that some teachers and administrators are beginning to see that segregating students with disabilities in classes without access to the general education curriculum or highly qualified -- content trained -- teachers is partly to blame for the achievement gap," she said. "Unfortunately other teachers and administrators are spending more time fighting NCLB than they are spending on narrowing this gap.
"The biggest impact of NCLB may be a revolution in the way we talk about education for students with disabilities," she said. "The standard has always been an appropriate education which provides some minimal benefit or progress on IEP goals. We only heard 'world class' or 'state of the art' applied to general education. With NCLB, school systems will have to start applying those terms to students with disabilities if they are not to be left behind."
Sabia introduced me to other advocates for children with disabilities who support No Child Left Behind. Selene Almazan, an attorney for the Maryland Coalition for Inclusive Education, has a son with a reading disability attending a Montgomery County high school. She said she first had her doubts about the federal law, but has since concluded it is helping her get more students with disabilities into regular classes where, she said, they will make the most progress.
Almazan, in turn, sent me a factsheet drawn up by Diane Smith of the National Association of Protection & Advocacy Systems. It dissects what she considers to be several myths about the federal law.
To those who say the law requires children with disabilities to take tests they cannot pass and forces them out of school, Smith says "most children with disabilities are able to keep up with their peers academically and take standardized tests successfully, some with and some without accommodations" such as readers or extra time. She says there are already many exceptions allowing districts to remove children with disabilities from the accountability system, and the tests for such children can come in many forms, with many kinds of accommodations.
Sabia said she is not happy about the U.S. Education Department's willingness to give states and districts even more leeway in the accountability requirements for children with disabilities, because she thinks this will send many students back to classes where they will not have access to the general education curriculum.
One administrator in Montgomery County told Sabia it was fine if she wanted to put her child through all the stress of standardized tests, but other parents did not want that forced on them. She replied that "the assessments aren't nearly as stressful for students as it will be to graduate without the skills they need to go on to employment or post-secondary education. Students with disabilities face a lot of well meaning paternalism, but they are being protected from the wrong things."
It is a messy process, trying to improve schools with a federal law, and there are parts of No Child Left Behind that do not make much sense. But when parents who have struggled to find the right teachers for their children say the law has helped them do that, it is worth listening to them, and making certain that when the Congress and the bureaucracy try to adjust the law, they don't remove those pieces that work best.