Parents want the best for their disabled kids. Public schools say they can't handle the cost.
Luke Perkins has been living "two disparate lives," court documents say: one at school in Berthoud, Colo., where the autistic boy was making some progress, and the other outside school, where the 9-year-old was so unruly he could not take part in such basic activities as going to church or eating in a restaurant. He became so destructive at night that his family resorted to locking him in his bedroom, which had been stripped of furniture because he kept smearing feces all over everything.
As with many autistic children, the skills Luke was acquiring in the classroom were not very portable. (Learning how to use the toilet at school, for example, didn't translate into his knowing how to use one anywhere else.) Alarmed by his regression at home, the Perkinses in late 2003 enrolled Luke in a Boston boarding school renowned for its success with autistic children. And because federal law requires school districts to provide an extended school day and even residential services if a special-education student needs them, his parents informed Colorado's Thompson school district it had to pick up the bill for Boston Higashi's $135,000 annual tuition.
Not surprisingly, the district balked. It argued that Luke, now 11, had been doing just fine at his local elementary school and that it shouldn't be held responsible for his backsliding at home. But both an independent hearing officer and an administrative-law judge disagreed and found that Luke's disability was severe enough to warrant a publicly financed 24-hour educational program. The district is now suing in federal court to try to overturn those rulings.
The battle over who should pay how much to educate Luke Perkins is only the latest front in the war over funding for special education. It has been three decades since the Education for All Handicapped Children Act first guaranteed a free education tailored to meet the individual needs of students with disabilities. The goal of that law is honorable: to protect children whose disabilities for too long condemned them to low expectations. But the number of kids receiving special-ed services--for physical, cognitive, learning and other problems--has doubled since fiscal 1977, to an estimated 6.9 million (or roughly 11% of all students nationwide), and cash-strapped school districts are struggling to find funding for those children, who on average cost more than twice as much to educate as nondisabled students.
The result, in many instances, has been wrenching--and often expensive--clashes between parents seeking the best for their child and school administrators trying to balance the needs of all students. Special-ed costs threaten to eat into budgets for school endeavors that are not federally mandated, like athletics or the gifted-and-talented program. The money has to come from somewhere, says Becky Jay, who was president of the local school board when the Perkinses first asked for tuition reimbursement, "and regular kids lose out."
School districts stress that federal law does not require providing the best possible education for students like Luke. Rather, the law, which in 1990 was renamed the Individuals with Disabilities Education Act, guarantees only a free "appropriate" education. "It doesn't say 'free minimal public education,' and it doesn't say 'free optimal public education,'" says Francisco Negrón, general counsel for the National School Boards Association. "It's somewhere in the middle."
When Congress called for the creation of individualized education programs for special-ed students, the process was designed to be a collaboration between schools and parents, a compromise between scarce dollars and infinite hope. But often there is no such thing as a happy medium. School districts spent approximately $146 million resolving special-ed disputes in 2000, when some 11,000 parents of disabled students asked for due-process hearings to try to get more services for their children. This year the Department of Education expects about 14,000 parents to request such a proceeding, which Peter Wright, a special-ed attorney in Deltaville, Va., likens to a cross between a nasty divorce and a medical-malpractice suit. Each side feels betrayed by the other, and each brings in a slew of expert witnesses. "The cases that are on the table tend to be really difficult, thorny questions," says Andrew Rotherham, co-director of the Washington think tank Education Sector. "How much is enough?"
In the Perkins family's dispute--which has cost the district $191,000 in legal fees--school administrators say the parents are penalizing the district for Luke's behavior off campus. "The issues that they had were really surrounding home," says Karen Pielin, the district's special-ed director. Teachers from Berthoud went to the Perkinses' house to help get Luke on a schedule that would reinforce what he was learning at school. But Luke's father Jeff, a rheumatologist, said that even though they tried hard, the competing needs of their three other children made it impossible to keep Luke on exactly the same regimen 24 hours a day. "Luke's routine," Jeff testified, "is not our only--and cannot even be our main--goal."
The Perkinses repeatedly asked to send Luke back to a district nearby where they felt the teachers were better equipped to handle autistic students. Julie Perkins says she begged Thompson's special-ed director to transfer her son. "I was in tears, and she was a stone wall," Julie says. The family's transfer requests were denied because Thompson wouldn't reimburse the other district for the cost of teaching Luke. Meanwhile, at Berthoud Elementary, with one-on-one training and a trio of teacher's aides constantly at his side, the third-grader was advancing in such areas as writing the alphabet and using a computer mouse. But those skills had to keep being retaught, and Luke's parents regarded him as falling further behind. After hiring a therapist to observe Luke at school, the Perkinses learned that he was spending a lot of time throwing fits on the floor or hiding under a table. "His behavior was so out of control that education was simply a pipe dream," Jeff says.
So Luke's parents searched online for better intervention methods and came upon Boston Higashi. The school uses rigorous exercise to get autistic children to start eating and sleeping regularly. And once those biorhythms are on track, students can begin to acquire basic living and academic skills. Within four months of being at Higashi, Luke went home for vacation mostly toilet trained. He has since conquered such complex tasks as riding a unicycle and walking on stilts--activities that have given him confidence to try other new things. "I do think he can have a life that's happy and maybe even productive," Jeff says. "If we had left him in the situation he was in, he would have ended up being institutionalized."
That belief makes it particularly hard for the Perkinses to hear people criticize them for fighting to keep Luke at Higashi or suggest that they just wanted to get a troublesome child out of their house. At their due-process hearing, the school district's attorney "was telling us that we were bad parents and that we just wanted to have an easy life," Jeff says, blinking back tears. He also insists that "we're not insensitive to the money issues." But he argues that the family's tax dollars contribute to the $2 million tuition-assistance fund Colorado created this year to help local districts with children whose special-ed services cost $50,000 or more a year. In other words, Luke is entitled to his share.
As other states create similar funds for high-needs children, the cost crunch has been complicated by mixed messages from the Federal Government. Parts of the No Child Left Behind Act require schools to raise the academic performance of children with disabilities, but the Federal Government picks up less than 18% of the additional cost of educating those students. And amid the increasing demand for special-ed services, Congress and the Supreme Court have made it harder for parents to challenge school districts' decisions on how much support their kids should receive. Although the latest version of the statute added a requirement for a last-ditch resolution meeting before the start of court hearings, which often cost each side $10,000 a pop, there's also a new provision that makes parents pay a district's legal fees if a court finds that they have filed a "frivolous" or "unreasonable" lawsuit. And the Supreme Court upped the ante in June when it ruled that a district didn't have to reimburse parents who prevailed in court for the fees many pay consultants to help wring additional services from school systems. The resources required--in terms of money and time--make it all but impossible for low-income parents to mount a successful campaign.
"It is very much a David and Goliath situation," the Perkinses' attorney, Jack Robinson, says of going up against a school district. Even parents who have the means to get a good slingshot don't always win. Over the past 15 years, a few dozen kids have been pulled out of Boston Higashi because their families failed to get public funding and couldn't afford the tuition. As the Perkinses await reimbursement from the Thompson district, money is getting tight. The family has had to take out a $90,000 loan to battle the school district. "We've spent every penny," Julie says. "We are right on the line."
To weigh in on the special-education-funding debate, post your comments at time.com/specialed
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