Our story: IQ, IEPs, & Injustice

Juliet & her winning photograph of her brother in the school’s art contest

Yesterday, I attended a three-hour IEP meeting for my daughter. It demonstrated the systematic injustice that disables those it labels disabled.

My purpose in writing this.

I want to set out upfront that my purpose in writing this is not to be critical of those involved in setting Juliet’s IEP. These are wonderful, compassionate educational professionals that have worked with my daughter for the eight years she’s attended our neighborhood public school. My purpose instead is to explain how the system they work within applies pressure to inhibit children with special needs from having the opportunity to achieve their full potential. So, my criticisms voiced here are against the educational system, and not against those teachers, therapists, and administrators who must work within it.

IEPs

For the uninitiated, “IEP” stands for Individualized Education Program. Students that qualify under the Individuals with Disabilities Education Act (IDEA) to receive support and accommodations as part of their legislated right to a “FAPE,” a Free and Appropriate Public Education, have an IEP to establish goals and supports to achieve those goals.

By the very nomenclature, you can see that these measures were done with the best of intentions: a federal law for students who had historically been segregated, warehoused, and left to languish are now guaranteed a free public education that would be implemented uniquely to each of their individual needs through an IEP.

Still, the acronym “IEP” can send a chill down parents’ spines and set their jaws for those who have been through an IEP meeting for the reasons discussed below.

Can’ts vs. wells

The reason this IEP meeting was the longest one out of the eight annual ones we’ve had is because it had two additional topics not in the typical IEP meeting.

A typical IEP meeting begins with an explanation of how your child performed in the past year under the existing IEP: how well she is meeting the goals; how the goals were implemented; and any issues that arose that need to be discussed and addressed in the IEP for the coming year.

This is how our meeting began, with Juliet’s classroom teacher beginning by listing a number of things she struggles with or is challenged by. She can give non-responsive answers to questions; she doesn’t speak up or ask questions proactively in class; and, she has a crush on a classmate that can be a distraction.

After this litany of “can’ts,” I asked, “what does she do well?” And this was met with an equally long list of all the things that Juliet does well: she enjoys when a teaching method involves acting out scenes with her classmates; she’s creative and illustrates word lists with pictures of the words; and she has many friends that enjoy playing games with her.

The tone of the meeting palpably changed after the focus shifted to what Juliet does well instead of what she can’t do.

Her resource teacher (AKA “special ed” teacher), detailed how, while Juliet struggles at writing extemporaneously, she can express herself once given two choices to choose from; how, while Juliet has difficulty simplifying fractions, she is able to get the correct answer using her calculator; and, how, while Juliet did not meet her writing goals, she performed well toward her math goal.

To round out the reports were the therapists who see Juliet. Her Speech Therapist noted how they were still developing Juliet’s ability to accurately answer “how” and “why” questions, but how she has also noted how Juliet’s conversational speech has markedly improved, with Juliet initiating and maintaining conversations. Juliet’s Occupational Therapist gave the final report, commenting on how Juliet’s posture has improved and how her pencil grip remains strong, though work is needed to keep her writing on the ruled lines of notepaper.

And, then came the first of the two additional matters to be discussed.

IQ

In order for Juliet to maintain the supports and accommodations she receives, she, like every other child with an IEP, has periodic reassessments to determine her functionality and need level. The response of “yes, she still has Down syndrome” is not sufficient. As part of this most recent reassessment, she had her IQ tested. And these results were shared and discussed with us.

And I wept.

While they discussed the results, I googled to see what the range of the scale was that they were placing her IQ on. It was decidedly on the low end.

In my mind, I wondered, “how can the IQ result be that low and yet Juliet is able to do mathematical computations correctly on a calculator, never comes home with a grade less than a ‘C,’ and, on the state’s standardized test, she tests at the state average–not the average for ECE kids, but the average for all students?”

It made me weep because, for those who don’t know Juliet, who do not take the time to look at her report cards, or standardized test result, or to have a conversation with her, it will be that IQ number by which they will define her and set their expectations for her.

At the same time, in a real life moment of holding two conflicting ideas at the same time, I also thought, ironically, paradoxically, tormentingly, “It’s a good thing that this is what the IQ test says: the lower the rating, the more supports and accommodations she’ll be entitled to receive and then she’ll continue to perform at the high level she is performing at when well-supported.”

Juliet has been well-supported by her elementary school. Until this year, she has had a one-on-one in-classroom aide. In the earlier grades, she was pulled out more for one-on-one instruction by a resource teacher, but now she spends most of her time in the regular education class after it was decided at last year’s IEP that she learns better with her typical peers. Through it all, she has had teachers and administrators who recognized that Juliet had the potential to succeed in a fully-included setting.

Which is what made the second additional matter more concerning after the gut-punch of the IQ report.

Systematic injustice

This was Juliet’s last IEP in elementary school, with her entering 6th grade and middle school next school year. For this reason, we had a counselor from her middle school attend the IEP.

In truth, while I wanted to hear what Juliet did well, I was prompted to ask the question after the litany of “can’ts” so that the counselor, who had not met Juliet, would have a more accurate picture of what kind of student Juliet is and can be.

Fortunately, she did hear how well Juliet is performing, but unfortunately she wasn’t able to stay all three hours.

Had she, she would have heard how despite the struggles that Juliet has, which she can overcome when the proper supports are in place, particularly an in-classroom aide to help keep Juliet on task and accommodate the assignments according to the IEP, it was doubtful that an aide would be provided. We were told this is because the county’s school system audits each school and, for budgetary reasons, challenges whether the aides already in place are needed when an adjusting of schedules could have another teacher cover certain times, another staff member step in for a block of time, and yet someone else come in, and that way a paid position could be eliminated.

On its face, it’s unjust to pass legislation with findings and declarations on how it is the right of every child to a free and appropriate public education, with “appropriate” being informed by the requirement that the child learn in the “least restrictive environment,” but then build a system which requires emotionally traumatizing parents by explaining all the needs their child has in order to be in the least restrictive environment, and, in the next breath, explain why the system is unlikely to provide the appropriate supports so that the child can be in that environment where it has been determined she ultimately learns best and is performing at the state average.

With the justification being: “yes, we know it’s what the law requires, but we simply can’t afford it.”

And, because of my particular focus, I will make an admittedly harsh shoe-horning of the focus of most of this blog and how it piles onto this injustice.

In Kentucky, half of all pregnancies are covered by Medicaid. This is due to the economic situation of my homestate and Medicaid giving pregnant women access at a level above the otherwise-required poverty level. Moreover, since Obamacare, now every Kentuckian has access to a publicly-funded exchange where they can select coverage that requires, as an essential health benefit, prenatal care.

There are over 50,000 live births annually in Kentucky.  It is estimated that around 70% of all expectant women have some form of prenatal testing done. Even if those women only had conventional screening, which costs around $200 (and is an extremely conservative estimate since a statistically significant number of expectant moms will have cell free DNA screening and invasive testing that costs in the thousands for each procedure), we’re talking literally millions* of taxpayer dollars are being spent on prenatal tests that offer no treatment options and have not been shown to result in improved medical outcomes for the child.

In my opinion, these are avoidable costs and represent public funds that could be better spent.

For the in-classroom aide who makes little more than minimum wage, there are enough public dollars spent on prenatal testing that not only could Juliet have her in-classroom aide and enjoy the least restrictive environment and be able to excel in school and shock and change educators’ and classmates’ opinions about what a kid with Down syndrome is able to do, but there would be enough public funds** to provide similar supports for every one of Juliet’s friends who have Down syndrome that are fully included.

Then, they would be receiving the free and appropriate public education they’re legally entitled to.

Then, people’s attitudes would change about what a life with Down syndrome can be like.

And, then, we’d have spent our taxpayer money more compassionately, more effectively, and simply more reasonably that would lead to a better world for all of us.

And, admittedly selfishly, but for me, most importantly, for Juliet.

UPDATE: We learned that Juliet’s middle school has hired an in-classroom aide whose primary responsibility will be assisting Juliet. This is very welcomed news and we look forward to seeing how receiving the supports she needs will enable Juliet to continue to excel in school. My critique of the systematic injustice remains, this positive news for us individually notwithstanding. There remain far too many children with IEPs denied the supports identified that they need due to budgetary constraints–constraints which could be alleviated if we re-prioritized funding to support lives with Down syndrome rather than funding technology to enable the reduction of the number of those lives that are born.

* For those interested in the math: 50,000 live births per year X 50% who are covered by Medicaid X 70% who will have prenatal testing X $200 cost of conventional screening = $3,500,000. Of those a certain percentage (around 5%) will receive a screen-positive report, of which a certain percentage may opt for cfDNA screening, which will further narrow the number of screen-positives but at a cost of at least $800 per cfDNA screen, for a total cfDNA screen cost of $700,000 (5% of those receiving screening X 70% (# choosing cfDNA screening) X $800). Of those receiving a cfDNA screen-positive, a certain percentage will undergo invasive testing at a cost of at least $2,000 on average per procedure for a total invasive testing cost of $857,500 (# receiving cfDNA screen (612.5) X 70% (# choosing invasive testing) X $2,000). Estimated total cost of Medicaid-funded prenatal testing: $5,057,500.

** Let’s say an in-classroom aide makes $10/hour for a 40/hour workweek; double that cost to account for benefits, insurance, and administrative overhead. At $20/hour for 40 hours at 41 workweeks per year = $32,800. It has been estimated that the live birth incidence for Down syndrome is about 1 in 800 births. Applying that incidence rate to the annual live birth rate of 50,000 for Kentucky (50,000 X 1/800) equals 63 children born each year in Kentucky with Down syndrome. Therefore, there would be on average, 63 kids per grade for K-12 or 819 students with Down syndrome. The money spent on Medicaid-funded prenatal testing would support a one-on-one in-classroom aide for every fifth child with Down syndrome, close to the percentage of children with Down syndrome who, to my knowledge, are fully-included in public schools, i.e. not in a self-contained classroom.