PATIENT No. 26216721 at Brigham and Women’s Hospital is the size of a soda can. A twin born nearly two months early, she weighs barely a pound and a half. An orange feeding tube the width of an electrical wire disappears into her nose. She’s connected to a ventilator that provides the oxygen her unfinished brain requires to continue to develop. Moisture is pumped into her incubator to protect the tissue-paper-thin skin, through which you can see her tiny heart beating.
The Brigham’s neonatal intensive-care unit, behind a locked door on the hospital’s sixth floor, was built in 1980 to house up to 50 infants. These days, there are typically 55 here, and sometimes as many as 70. That’s because a lot of babies are arriving prematurely, often as an outcome of fertility treatments, multiple births, and the fact that more than half of the mothers of Massachusetts newborns are over 30, older than in any other state.
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Doctors can now save babies born just 24 weeks into a pregnancy, infants so small they can fit in the palm of their obstetricians’ hand. And with advances in fetal monitoring, steroids used to speed up growth, and compounds that can stabilize the babies’ lungs, the odds of survival for newborns weighing around two pounds have soared over the past several decades. In the 1980s, doctors could save only 1 in 10; today, that number is 9 in 10.
This miracle of medical technology has occurred largely unnoticed by anyone who hasn’t had a preterm infant or who doesn’t know a family that has. But its impact is far wider. A quarter of extremely preterm and low-birth-weight babies – those born at 25 weeks or fewer – may be severely disabled, according to the American College of Obstetricians and Gynecologists. As many as half will have problems with their physical and mental development.
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And, before too long, many of them will end up in this state’s already overburdened special education system.
It’s a daunting prospect, especially at a time when the march of science, among other things, has vastly increased the number of children being classified as having special needs. Between 2006 and 2010, the number of students diagnosed with autism in Massachusetts soared by 66 percent, the number with serious health problems by 59 percent, and the number with neurological disorders by 35 percent.
All of these things are pushing up the numbers of kids in special education, as well as its costs – even as schools struggle with exploding outlays for employee health care and pensions, federal support for special education may be on the chopping block, and the nation is contentiously debating the very kind of social compact under which we all help pay to do such things as educate our neighbors’ kids.
Doctors who work with preterm infants “like to think that we have rescued the babies, and they’re off and running,” says Janice Ware, director of infant studies in the Developmental Medicine Center at Children’s Hospital in Boston and herself the mother of two children born prematurely. “And we have. But they are also more likely to need our support down the road. And that can be expensive.”
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The timing of all of this is not good. There are nearly 165,000 students enrolled in special education in Massachusetts. The number has increased only 3 percent in the past 10 years, but that was a period during which the total number of students fell 2 percent. And special education’s cost is out of proportion with those figures, up 57 percent during those 10 years for services provided within schools and by 85 percent for kids sent to private programs. In 2000, Massachusetts schools spent just under $1.2 billion on special education. Last year, they spent more than $2 billion.
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Although it’s difficult to compare Massachusetts special education statistics to national averages – states measure numbers of students differently, and programs vary – this state tends to be relatively generous. Seventeen percent of public school students here are classified as having special needs, higher than the national average of 12 percent. The numbers vary widely by school district: It’s 8 percent in Nahant, for instance, but 22 percent in Cambridge and 26 percent in Holyoke.
A little more than half of Massachusetts special education students – fewer than the national average – spend most of their time in general education, or so-called mainstream, classrooms. An above-average 15 percent get most of their educations in dedicated special needs classes. Nearly 7 percent, double the national average, are sent to private day or residential programs, which cost anywhere from $26,000 to more than $300,000 a year per student.
All of this has helped push the proportion of public school budgets that goes to special ed in this state from around 1 dollar out of every 6 to 1 dollar out of every 5.
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Finding ways to educate special needs children is mandated by state and federal law, says Tom Scott, executive director of the Massachusetts Association of School Superintendents. “So many of those other things become discretionary – class size, professional development, supplies, textbooks, athletics, transportation. It’s a Hobson’s choice. Where do those resources go?”
State and local officials have long tried, in vain, to slow increases in special education spending. Beacon Hill once guaranteed “maximum feasible” services to students with special needs, but with expenses ballooning in the late 1990s, it lowered that standard to a promise of an “appropriate” education. In 2009, a state early intervention program for children ages 3 and younger with developmental delays raised its eligibility threshold after the number of kids served increased more than 25 percent in the preceding decade.
With the number of referrals by teachers, parents, and specialists on the rise, some districts are now turning down students for special education programs. Nearly 1 in 3 of the 31,570 students referred last academic year were found ineligible in initial evaluations. Mitchell Chester, state commissioner of elementary and secondary education, suspects this is at least in part because of schools’ concerns about money. Now there’s the added worry that $291 million a year that Massachusetts gets in federal support for special education may be cut or reduced as part of Washington’s austerity kick.
And yet the number of students who are referred and accepted isn’t going down over the long term. This, Scott says, is worsened by the fact that the growth in the cost of special ed is outpacing the rise in the number of students enrolled in it.
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“It’s not just that we’ve seen an increase in the number of kids in special education,” Scott says. “We’re seeing an increase in the complexity of the [problems facing] kids in special education. And a lot of that is because of medical technology.”
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When their exhausted parents go home for the night, the infants in the Brigham’s neonatal ICU are fed, changed, and held by nurses who use the time to check for signs of issues that, among other things, could slow their motor and communication skills. “Every interaction is an opportunity to monitor for that,” says Dr. Steven Ringer, the hospital’s chief of newborn medicine, whose beard and genial personality have gotten him cast as Santa Claus in the ward’s Christmas celebrations. It often takes time for such symptoms to show up, so when the babies are finally able to go home, the hospital helps put parents in touch with local early intervention programs.
By their first birthdays, the brains of preterm babies will have tripled in volume, and the last part to take shape will be the frontal lobe, which controls the capacity to organize, plan, and pay attention. It’s during this time that such syndromes as autism and attention deficit hyperactivity disorder can arise. Even “late-preterm” babies, born after eight and a half months of pregnancy, can be at risk; because they’re often the size and weight of full-term infants, they seldom get the special care they need to avert complications, according to the American Academy of Pediatrics.
“Overall, the news is incredibly positive, but we are far from perfect,” Ringer says. “Their survival is improved, but these babies face additional sets of challenges. They’re tiny little creatures, and they’re only partly developed. So many things can injure them. Even though we’ve gotten better and kids escape what we in the medical community would consider major disabilities, things like behavioral problems and learning disabilities often occur even in the kids who otherwise seem to have escaped unscathed.”
Another challenge is the rise of autism, for which diagnostic techniques have improved dramatically. One out of every 110 children born in America today has autism, the Centers for Disease Control and Prevention now estimates. And the Autism Society, a grassroots autism-awareness organization, reports that the number of children being diagnosed is rising by between 10 percent and 17 percent every year.
About 11,000 of the kids now in special education have autism, a small proportion of the total. And only about 2,600 premature babies are born statewide each year. Yet educators worry the growing ranks of children with particularly challenging and expensive conditions – a child with autism can cost three times as much to educate as one without it – are pushing their districts to the financial edge, while advocates fear the relentless rise in costs will fuel an “us-versus-them” debate in tax-weary towns.
“Medically fragile and autistic students require among the highest cost services that we experience,” says Chester, the education commissioner. “These students take up a very large proportion of the total budget, and as districts cope with increasingly tight budgets, that’s likely to exacerbate the tension that already exists between the cost of educating special needs students and the cost of educating other students.”
Even if you put aside issues of money, “the teachers will tell you these kids are needier,” says Ringer. “They’re getting extra attention, which means other kids are getting less attention. So in some way, shape, or form, it’s affecting the education of the other kids. The way this engulfs societal mores and beliefs is just all-encompassing.”
There’s an obvious solution, as parents of, and activists for, special needs children see it: Figure out how to pay more attention to all students. “Schools should be focused on having all kids succeed,” says Jerry Mogul, executive director of Massachusetts Advocates for Children. “And that’s been the rhetoric for many years, but not the reality.” For all the money spent on special education, for example, only 38 percent of students with special needs pass the 10th-grade Massachusetts Comprehensive Assessment System English test, less than half the percentage of all students who do.
“I have been hearing this issue of, we don’t have enough money, we don’t have enough money, we don’t have enough money,” says Ellen Chambers, founder of the special education watchdog group SPEDWatch. “I hear that in good times and bad. I heard it in 1997 and I hear it today and I’ve heard it every year between. The return that we get for that money is abysmal. We need a different way of thinking about educating them. And schools won’t do that. The public school culture is a closed culture.”
Continued failure, Chambers adds, means special needs students will leave schools without the skills they require to lead successful, independent lives, regardless of how much money is spent on them. “And guess who’s going to pay for that?” she asks. “We all are.”
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“Ableism.” That’s what Thomas Hehir, a professor at Harvard’s Graduate School of Education, calls the practices that public schools use to educate students with special needs. As in, a prejudice against disabled people. And he says these methods cost more than they need to and succeed less than they should.
Hehir has written several books on special education. The one he’s working on now is about students with disabilities who found their way to Harvard, including one who’s deaf and one who’s dyslexic. They’re helping him write it. The working title: How Did You Get Here?
“They learned the same thing as everybody else in the class, but they were allowed to learn it in the ways that were most efficient for them,” Hehir says in his cubbyhole of an office at Harvard’s Graduate School of Education.
The walls of the room are hung with mementos of Hehir’s work as a crusading advocate for disabled kids, including stints as head of the US Department of Education’s special education division, associate superintendent for the Chicago Public Schools in charge of special education, and director of special education for the Boston Public Schools. Now he’s been asked by the state Department of Elementary and Secondary Education to look at Massachusetts special education programs, and to determine whether students are being over- or underdiagnosed.
Hehir says he has found that low-income students are significantly more likely than other students to be placed in special education by Massachusetts schools. “There’s no way that could be because of disability – that all of those kids could be disabled,” he says. “But there’s this notion deep in the education system that special education is for every kid who’s struggling in school. And it shouldn’t be.”
Public schools in general, he says, are slow to help students who begin to fall behind. Many then end up being steered to pricey special education, when intervening early could have kept them in a classroom with their peers.
Hehir, who is scheduled to deliver his report to the state later this month, rejects the “ableism” that he says manifests itself in schools protecting kids with disabilities, trying to shelter them or make them “normal,” rather than finding ways to minimize the challenges they face. “This is a major policy issue right now,” he says. “Are we going to continue to rely on special education, or are we going to get serious about making the mainstream more accommodating of kids who have learning differences and disabilities?”
Hehir believes doing things his way – putting more students with special needs in mainstream classrooms and giving them tools to help them keep up with their peers – would also be much cheaper than segregating them, providing expensive one-on-one attention, or busing them to private programs.
“If we don’t do something about some of these issues,” Hehir says, “there’s going to be a train wreck.”
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Mrs. Foley’s second-grade classroom at the Francis Wyman School in Burlington is a cacophony of colors – letters, numbers, maps, and words – covering the walls, the windows, and the second-grader-sized desks. It’s the sixth day of the new academic year, and the school still smells of floor wax and wet paint. The lunchboxes are still new, the crayons still whole, the crew cuts and pigtails still first-day-of-school fresh. But the 7- and 8-year-old students in the class, divided into three groups, are already deep into their lesson.
Today, they’re learning about rhyming words. Students in one group lean into their pencils, intensely copying new words onto worksheets. Another group proposes words that rhyme to a teacher at a whiteboard. “Sand, land, stand, hand, band,” she writes. “Skip, ship, hip, dip, grip.” There’s a brief impasse over “mish,” which the teacher agrees rhymes with “wish,” but – in spite of the heartfelt protests of the student who suggested it – is unfortunately not a real word. A third group is absorbed in conversation with a tutor, who talks about how to use their imaginations while they read. “It’s like making a movie in your head,” she says.
This seemingly straightforward setup for teaching reading, writing, and language to the youngest kids at different levels is, in fact, a dramatic change, and it could reduce the demand for, and therefore cost of, special education. Like many pedagogical movements, it has a wonky name: “response to intervention,” or RTI. Yet it’s so simple, it seems head-slappingly obvious: Give all students the attention they need. It’s the educational equivalent of preventative medicine – a preemptive attack designed to keep students out of special education.
Just a few years ago, kids in this Burlington school were assigned to classrooms in alphabetical order or based on some other relatively random process. Some had high reading skills; some low. As a result, says Irene Farmer, a first-grade teacher who’s been closely involved in Burlington’s shift to the new system, “the classroom teachers had to sort of shoot for the middle.” Over the school year, the gap widened and the kids at the bottom were increasingly likely to be shunted off to special education. (Hehir calls this practice “wait and fail.”)
Now all the students in the second grade are tested and assigned to classrooms based on skill level, then subdivided again within classes into even more targeted groups. That way, all the poor readers can be scheduled to spend their reading periods together. So can the advanced readers. Teachers adjust their time accordingly. “There’s still variation, but it’s much more manageable,” says Susan Astone, the school’s principal. In her office, Astone tracks the progress of the slower learners on pink and yellow slips thumbtacked to a chart that shows the range of reading levels – lowest on the left, highest on the right. Most of the slips have already moved toward the right.
Reading tutors who once circulated from one classroom to another can now spend more time with the kids who need their help. High-achieving students also get more attention, no longer ignored by teachers working with their slower-reading peers. And children who might struggle are less embarrassed to admit it, knowing they’re among classmates who are facing exactly the same challenges. “The biggest difference is the confidence,” says Farmer. “Never, ever, ever anymore do I hear ‘I can’t read.’ ”
This approach won’t keep all learning- or physically disabled students from the special education track. And it’s too early to measure its effect in Burlington in a statistically significant way. But it already seems to be diverting kids from special education who might have ended up there just because they fell behind in their reading. After two full years, the school has seen fewer special ed referrals, says Astone.
Mitchell Chester wants to see more schools try programs like this. “I’m concerned that we identify in Massachusetts a large proportion of students as disabled who, if they had the right support and attention, would not be,” the commissioner says.
After all, the flow of kids into the system shows no sign of slowing. That neonatal ICU keeps filling up, and the number of children diagnosed with autism and developmental disorders continues to rise. “Medical technology isn’t going backward,” says Scott of the state’s Association of School Superintendents. “It’s going forward. The demand for special ed is going to continue. And the costs are going to keep going up.”
Jon Marcus is the US correspondent for Times (UK) Higher Education magazine. Send comments to magazine@globe.com.