No Child Left Behind - Except Mine (draft 1)

President Bush is pleased as punch about his "No Child Left Behind" education act. Senator Kerry says that he supports the NCLBA - with a few modifications. Nothing on his website suggests that students with disabilities fall into his category for needed modifications. This was originally to be an open letter to both Kerry and Bush letting them know my most pressing concern about NCLB, but it seems that I'm not yet calm enough to write a cogent letter.

Under No Child Left Behind, a certain percentage of all students (regardless of sex, race, ethnicity, socio-economic status, or disability must pass standardized tests in order for the school to keep its federal funding. Well, duh. Obviously this pressures schools to divest themselves of students who aren't performing up to grade level.

Each student with a diagnosed disability has a federally required Individual Education Plan (IEP) with realistic goals for that child given her or his special needs. Two federal mandates are clashing here.

Regardless of a child's special needs, regardless of what the IEP specifies as appropriate target educational goals for each student, all students are tested equally under No Child Left Behind. And if kids with special needs aren't passing, then the school is assessed serious penalties.

Hello?!! Why aren't people talking about this? Why aren't people enraged? We don't like to think about disabled kids. Well, wake up, people! This could be your child. We're not just talking about poor black babies from elsewhere who were born addicted to crack. We're also talking about very intelligent white kids from the suburbs who have dyslexia or some other learning disability and require extended time for standardized tests. And we're talking about kids with Down syndrome, like my Ellie. This is not something that we can ignore. This is something we have to address - now - before more children get left behind.

The students who need the most help are the ones being pushed toward the door, and that is simply not right.

No Child Left Behind – Except Mine

An Open Letter to President Bush and Senator Kerry

President Bush and Senator Kerry,

You both support the No Child Left Behind education act, and there is a critical problem with the implementation of NCLB related to students with special needs that requires an urgent response.

Under NCLB, a percentage of all students must prove grade-level proficiency via standardized tests in certain core subjects, regardless of ethnicity, gender, socio-economic status, or disability. If any one student group (e.g. students with special needs) fails to prove proficiency on any one of 40 tested criteria, the whole school fails to show "adequate yearly progress" and will be penalized. 100% student proficiency is demanded by 2014.

The federal Individuals with Disabilities Education Act (IDEA) regulates education for students with special needs. Every student with a diagnosed disability or delay has an Individual Education Plan, specifying appropriate educational goals for that student.

NCLB and IDEA are meant to be complimentary pieces of legislation. However, the two federal regulations, as they are interpreted by many states across the nation, are at loggerheads. Students with developmental delays are being tested on material they have not been taught and might be incapable of mastering at an age-appropriate level. Students of normal intelligence with learning disabilities (e.g. dyslexia) who require extra time or other considerations to complete their work are not being granted exceptions. And schools are being penalized for their high failure rates.

This is a very important problem and it needs to be addressed immediately. Federal clarification and oversight are necessary to insure that the students who need the most help are getting it. Blind adherence to standardized tests for all students is serving to exclude those students for whom primary and secondary education is most critical.

Let's not leave more of our children behind.

Sincerely,
Sarahlynn
Kirkwood, MO

The Candidates on Disability - Part I

I'm sitting in my car outside a closed Starbucks, finished with my pumpkin latte but still slurping down the dregs of their wi-fi. Ike's leftover fury hit St. Louis early this morning with a deluge: flooding our roads, knocking down our branches, and taking out our power. (Update. Starbucks turned off their WiFi so I've driven across the street to McDonalds, where I'm paying for access. The madness! This will necessarily be a short post as I have little laptop battery remaining and no idea when our electricity will be restored.)

If you go over to John McCain's campaign website and click on the "Issues" tab, there's no listing for "Disability." Under "Health Care" there are certainly some items of note for people concerned with disability issues, including a statement about autism.

On the "Education" page, we learn that McCain supports No Child Left Behind. (I have blogged about the effects of this program on full inclusion for children with disabilities, links under "Labels" in the sidebar.) We also learn that - surprise! - "There is no shortage of federal programs targeted at early child care and preschool." In exchange for all that money that our schools get, we need to prepare our preschoolers for their own federally-mandated standardized tests: "Every federally supported program (including Head Start) must include meaningful, measurable standards designed to determine that students are ready for school by measuring their school readiness skills."

Under Human Dignity and Life we see nothing about disbility. The platform discusses abortion, adoption, gay marriage, embyonic stem cell research, online pedophiles, and online pornography.

A search for "disability" on the website turns up just 7 results. Among those results are a couple of unrelated pages, McCain's support of "closed captioning, hearing aid compatibility, and video description," and his support of services for disabled veterans.

In closing, there's definitely information of interest on John McCain's website for people with disabilities, though you have to look around for it.

Disability concerns aren't high enough on McCain's list of priorities to deserve their own tab or page, and are often mentioned in general terms if called out at all.

According to McCain's 2007 tax return, all of his charitable donations go through the John and Cindy McCain Family Foundation, which primarily supports private schools that his children have attended. Other recipients include "Operation Smile, which repairs facial abnormalities in children and young people, and . . . the Halo Trust, which removes debris left behind after wars, especially land mines."

I am concerned about the importance John McCain places on disability issues, and what that suggests about the policies he'd support as President. My next post will focus on what Obama's campaign web site says about disability, then I'll move along to legislative records.

Assuming, of course, that we get power back at some point.

A Culture of Life?

I knew that I was expecting a baby with Down syndrome, and the news got around. Pretty soon, I started getting recommendations. A coworker I barely knew has a son with the same diagnoses Ellie has, and she stopped by my office with a lot of great information (and support) including the name of her son's fabulous pediatrician and his inclusive daycare, complete with great therapists. The special OB who performed my prenatal testing set me up with a terrific pediatric cardiologist who did a couple of fetal echocardiograms. Fetal. Like, before Ellie was even born. And then I had 20 weeks to grieve for what I imagined I'd lost, and to prepare for my daughter's birth.

When Ellie was born, I was so far ahead of where most women are after giving birth to a baby with trisomy 21.

And I loved my baby. I loved her so much, I hardly ever put her down. We had no problems nursing; we had immediate, intense attachment. Also, my mom had given me a book of therapy exercises to do with young children with Down syndrome, which I did daily almost from the time we got home from the hospital.

But I was still paralyzed by fear and discomfort and desire not to have to negotiate this new world into which I was thrust. I could handle the medical stuff. But First Steps and therapies? Nonononononono.

Many pediatricians deal mostly with typically developing children, but Ellie's amazing, wonderful, terrific, unbelievable pediatrician was so helpful. She made the first call for me. She followed up. She told me what to expect, what to ask for, what Ellie needed. I got it all.

And then, the system changed. After our new "Pro-Life" governor was convinced that he really didn't want to eliminate the First Steps program after all (start at the bottom) he still decided to cut it way back.

He instituted fees for some of the services, and a whole new model for determining what services are provided to our state's most vulnerable children.

When Ellie was 4 months old, she had an OT and a PT. By the time she was 12 months old, she'd added a developmental therapist and a speech path. A woman I know had a baby with Down syndrome two years after Ellie was born, and by the time her baby was 9 months old, she was receiving zero services. Nothing. Nada.

Because now, instead of working with the parent to determine the baby's needs based on diagnosis, pediatrician's recommendation, evaluation, or even a simple questionnaire, it's all based on one question: what are your concerns?

When the stunned new parent of a baby with any sort of special need finally works up the nerve to call the organization that's supposed to help her child, she's presented with this:

How are things going; do you have any current concerns?

It's a newborn baby! With an unexpected diagnosis! What is the parent supposed to say to this?! She's not walking properly yet, being a newborn and all. Perhaps she should have physical therapy?

As the parent, I am the expert on my baby. I'm the expert on her day-to-day needs, and on loving her. BUT, I'm not an expert on all babies. I'm not an expert on PT, OT, development, medicine, or speech. I need to be able to rely on a team of experts who will tell me what my baby needs.

But we withhold this information, tying the hands of the providers lest they offer more services than the parent knows to ask for, costing the state money (in the short term). Yet we want women to choose not to have abortions?

No Child Left Behind has made sure that public education continues this ugly trend.

The goals on a student's IEP (individualized educational plan) drive what therapies she receives and what her therapists address with her. But the goals are derived directly from the "Family Concerns" section of the IEP. We messed up last year and didn't write down enough parent concerns and are currently having to supplement Ellie's therapies in all areas.

Tomorrow is Ellie's IEP meeting for next year, and I've been preparing for weeks. I've taken a training class and I have a better idea of what to ask for, and how.

But it shouldn't be this hard for parents. The experts should be able to help us determine what Ellie needs, and what it's realistic to ask of her.

Because, you know what? I'm more equipped to deal with this situation than a lot of other parents. What does it mean for their children? And what does it mean for our society when these children leave school and are expected to become productive adults?