As I explained earlier in Cloud Computing and Disabilities, disabilities are part of the spectrum of being human. As the medical understanding of disability as changed, federal regulations have evolved to reflect this understanding as well. In fact, the IDEA 2004 recognizes that "Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society. Improving educational results for children with disabilities is an essential element of our national policy ofensuring equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities."
The problem - and it's built into the same IDEA regulations - is that special ed services are available only to those kids who fit into one of about a dozen boxes (e.g., specific learning disability, visual impairment, other health impairment, etc.) On top of that, many school districts require there to be a significant discrepancy between the child's intelligence and academic performance to even offer the child services. In some cases, this might mean that your child needs to be 2 standard deviations away from the norm on an assessment test. It's not enough to say that your child is struggling with reading; your child needs to be struggling with reading AND is performing at, say, the 16th percentile.
So if your child is deemed disabled enough, he qualifies for special education support. But recognize that if your child isn't quite "disabled enough" - because he's been working hard at learning to read, and learning to speak; because you, parent, have paid out of pocket for 3 sessions of private speech therapy a week, or ABA, or OT, or PT - there will be no special education supports forthcoming. Never mind that your kid is spending 6 hours a day on homework, and has no time for other activities; never mind that you yourself are spending countless hours (and money) adding support systems for your kid. If your kid isn't disabled enough to qualify for services, you are out of luck.
Parents are thus caught in a strange double bind. On the one hand, we obviously want our child to succeed - and not require any kind of special ed services. But if that's not realistic for the kid, then parents are incentivized to make sure that the child is deemed disabled enough to get services. I know of one family where a month before the annual school testing, the parents temporarily stopped the private tutoring for their child so that he would struggle more on the assessment test, thereby trying to ensure that he would do worse (and thus qualify for services). Another family stopped giving their son fish oil (which had seemed to help him) a few weeks before the assessment test. Talk about misaligned incentives.
In an ideal world, we could have a school system where each child received the learning methodology and supports appropriate to that child - without a need to fit the child into some kind of box. Your child is gifted? They get more challenging work. Your child needs reading support? They receive that - while working at grade-level curriculum. I find it really disturbing how schools (because of the way IDEA is structured) are using the old, medical model of disability instead of viewing abilities on a continuum. What child learns exactly the same as another child? Can't we figure out how to provide services to children without requiring them to be disabled enough?
I recently heard a wonderful special ed attorney talk about the passion she had for her work. She said, "Just like the eggshell plaintiff, each child is unique. Each child is an eggshell child. We take them as they come." That made me smile because of the reference to the eggshell plaintiff. For you non-lawyers out there, this is one of those concepts that all lawyers learn in first-year Torts: the basic rule is that you take your plaintiffs as they come. If the plaintiff has unique qualities that somehow magnify the harm she suffered, her recovery isn't limited to what a typical person would get. They are entitled to receive damages to make them whole.
The attorney's remark also made me reflect on how important it is that we view the child as a child first - and not as a "disabled child". One of my daughter's great, passionate, and incredibly skilled teachers said to me once, "You know, Siobhan is the perfect Siobhan." And she is. Her strengths and her weaknesses are who she is, and it's our job - all of our jobs - to ensure that each child is viewed in a similar way by their teachers and peers. You take your child as she is. Schools should too.
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