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When I moved our city-dwelling family to the suburbs so my kindergartner could attend a public school with one of the best reputations around, I never imagined the ordeal I would undergo just to keep her enrolled in that neighborhood school.

My daughter was born with apraxia of speech, a disorder that makes it hard for her to produce movements necessary for intelligible communication. Children with apraxia know what they want to say, they just can’t make the words or sounds come out efficiently. So my bright and sparkly little girl, with all kinds of wild and creative ideas, has spent most of her life struggling to share them. The only treatment is years of intensive speech therapy, and the disorder can be accompanied by a variety of other challenges that impact a child academically, socially, and emotionally. Thankfully, Individuals with Disabilities Education Act (IDEA), the 1975 law that mandates a “free and appropriate education” for children with disabilities, requires that public schools provide her extra support. In her case, this means speech and occupational therapy, plus some academic support.

IDEA sure seems like a good idea. But along with its enormous benefits to kids like mine, it also has set the stage for a tangle of conflict between parents and schools. Educating 50 million American public school students in 2014 cost an average of $12,281 per child. But for over six million of those students who received special ed services, the cost can be double or even triple that figure. Between the high costs of serving kids with disabilities for the districts, and parents who feel that schools may be balancing the budget at the cost of their child’s education, there’s enormous potential for conflict between school districts and families. School districts often have an edge — and power; I learned it’s important for parents to stay on top of the situation and check (and double check) their child’s special education placement.

Those early golden years

The first few years of elementary school started off well. My hardworking little student was learning and making friends. In second grade, spending a portion of her days in the school’s learning resource center and the rest in the regular classroom, she began to steadily improve.

While I struggled through her second grade year trying to educate myself about a long list of other special ed language — inclusion, accommodations, stay-puts, modifications, push-in, pull out, centralized special education — she was doing so well academically that she graduated out of the learning resource classroom and into the regular classroom for the upcoming year. This turned out to be lucky in more ways than one. As one of his first actions, the new principal closed down our learning resource center.

Third grade started out on a fantastic note. With a brilliant teacher and a group of close friends, my daughter was thriving. The daily worry I had felt since her diagnosis was slowly melting away as I saw her smile when she emerged from school.

Meeting needs or meeting the budget?

Then, a few months into the school year, I received an out-of-the-blue email from the principal. He expressed concern that the hours of specialized tutoring allotted to my daughter might not meet her academic needs. He asked to move her Individualized Education Plan (IEP) meeting to before the winter break. He requested permission for more academic testing to “help make a more informed decision about her placement.”

What? Where had this concern come from so suddenly? Not from her actual performance. Nor was it from her classroom teacher, who had expressed her joy at watching my daughter’s steady progress. Not from testing, since none had yet been conducted. And what “placement” could he be talking about? It was like his concerns had nothing to do with the reality at hand, like he hadn’t even reviewed my daughter’s progress at all. Like he’d sent us a form letter.

That November day, at school pick up, the pieces fell into place. Parents of other children receiving special ed services had also been asked for early IEP meetings and had received an almost identical message. Essentially, I had received a form letter. It marked the beginning of a plan to move kids with disabilities to a different school. The learning resource center had been closed at our school, but there was one at another school in our district. They wanted the kids to change schools midyear, and they were rescheduling IEP meetings up so the transfer could be made at the beginning of the new semester.

Even assuming that the best interests of these kids were being considered, which I questioned, someone had still forgotten that a child’s social and emotional well-being was as important as their academic achievements. And for my daughter, this was doubly true. A child who struggles to communicate has to work at least as hard at developing friendships as memorizing math facts.

Why would a school ignore the research?

After the principal’s unexpected email, I quickly started researching and found that a trend has grown in recent years toward having kids with disabilities spend more time in regular classrooms. Evidence shows that the more time a child with disabilities spends in the regular classroom, the less often they miss school or act out in class, and the higher their test scores and job prospects. The law actually requires schools to place children in the least restrictive environment to the maximum extent appropriate even if least restrictive means different things for each child, based on ability and need.

“The main thing is that each kid needs to be looked at individually and the school needs to ask, ‘How can we support the child in the classroom?,’” says special education attorney Ruth Lowenkron. “Studies show that educating children with disabilities alongside children who don’t have them advances the child’s social and academic well-being.”

I found the depressing fact that children with disabilities have graduation rates less than half that of their non-disabled peers. The more I read, the more I felt that my daughter needed to stay in her current school, with her friends, her wonderful teacher, and her budding confidence.

So much for partnership

To fully understand her academic needs, I decided to get her private academic testing, but this meant that the same tests couldn’t be conducted by the school district at the same time. Despite informing the school of my intention, they quickly started testing without my permission. Somehow, I was losing the feeling that we all just wanted the best for my daughter. I was starting to feel like I had to fight for her rights. It was the first time in my parenting life that I was coming to see firsthand that the biggest challenges related to special needs aren’t always from the disability itself.

I knew as a mother that my daughter was doing well, she was confident, happy, social, and learning. I knew it was no time for a new school or for a restrictive classroom setting. I emailed the principal and told him that I had decided, after much thought, that I would not be considering a move and thought it would be most useful if we focused our efforts on how best to serve her in the current school. I suggest we push the meeting back to January when we would have test results available and when we could have an informed IEP meeting and find the best way of serving her within her current school. He left me a voicemail saying that they would meet without me present instead of canceling. Over and over, I’d heard the school saying that we were partners in helping my daughter succeed. But apparently we had different definitions of partnership.

When we finally sat down at the table for my daughter’s IEP meeting that January, I was surprised to find that the head of the other school’s learning center was there as a surprise guest. He had been brought in to sell the benefits of his program, and I could see that this sweet man was no happier to be there than I was to see him. At the very same meeting, we also heard what I had already known instinctively — it turned out that my daughter was doing much better academically than ever before and better than they had expected. I, as an equal member of the IEP team, didn’t want her to move. So why all this pressure to move her?

A centralization problem

It turns out that the controversial practice our school had put in place was something called centralizing services. One centralized learning center is cheaper than one per school. And while two special ed teachers might be needed to serve all the students in a district like ours, there is only enough money to have one learning resource teacher who is run ragged shuttling from school to school. This is the reality, even in a public school district like ours that asks all families to pay $750 per year in support of their arts and music programs.

The practice of centralizing services has not only angered parents around the country, but inspired multiple lawsuits. The most famous case is the New Jersey case of J.T. versus Dumont Public Schools, filed on behalf of a kindergartner with autism who was forced to move to another school in his district.

His attorney, John Rue, says, “If a school district has a rule that says children can go to the school in their neighborhood, then the children with disabilities should also be sent to the neighborhood school unless there is a reason to change that.”

Special ed attorney Lowenkron says it’s no less than a matter of civil rights. “We learned from our experiences of separate not being equal in the civil rights era with children of color,” she explains. “It is no different when looking at children with disabilities.”

J.T.’s family lost the original case that would have kept him in his neighborhood school, but his mother recently filed an appeal in the New Jersey State Supreme Court. The case started when the child was in kindergarten, and he is now in fifth grade. I was hoping for a bit faster results for my daughter, but at the rate things were going, there was no guarantee.

Before you move

Diane Provo, child development behavior specialist and private consultant, points out that you need to look at things like accommodations and modifications before considering a drastic move like a change of schools. She says that strategies can include, “Directions repeated in multiple ways, checking for understanding, preferential seating, a buddy in class, use of technology. All of that needs to be applied before there is a consideration of changing where a child goes to school.”

One special ed teacher who asked not to be named told me that it’s easier for a general ed teacher to manage a class full of students working at similar levels than one with students who need extra support, even if this cannot legally be taken into consideration with a child’s placement. She advises parents to remember that, “You have rights and your child has rights. Getting the right academic support is something you need to fight for. If you don’t feel good about a proposed change in your child’s (plan), don’t sign it.”

She’s right. But pushing back takes energy. And conviction. My maternal instincts — about inclusion, and centralized classrooms, and about my daughter’s general well-being — all proved to be in line with her individual needs and the latest research on what’s best for children with disabilities. But it was only after I had armed myself with enough knowledge and research that I felt I had the power to really stand up for what she needed. “Parents should be reminded that they are really experts on their children, and can be even better experts if they arm themselves with the law and the facts,” says Lowenkron.

By the end of that school year, the other families I had talked to on the playground that November afternoon had one by one moved their kids to the self-contained learning center classroom in the other school, with mixed results. For my part, it seemed that the school had finally stopped pushing and was busy turning their efforts toward supporting my daughter in the general education classroom, in our neighborhood school, where she belonged. Or they had almost stopped pushing — except for that one final phone message from the school secretary just before the start of the fourth grade year, the one asking me to please sign and return the necessary paperwork that would allow my daughter to change schools before the start of the school year. The secretary had been informed that we were considering a move.

When I didn’t return the call, they soon hired a wonderful new resource teacher to serve those children who need it, and mostly in the least restrictive way — by “pushing into” their classroom. That’s special ed speak for the teacher bringing materials and providing instruction and support in the student’s regular classroom. I’m hoping that will be the only kind of pushing we will see from the school for a long time.

Understood.org is a comprehensive resource for parents of kids with learning and attention issues. See their collection of personal stories about navigating the IEP process .

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