Monday, July 9, 2012

Smart Advocacy for Special Needs Children

Because I think many of you, Readers, have some connection to the world of special education, I wanted to repost this wonderful piece by Benjy's truly exceptional educational advocate, Laurel Collins. We've learned a lot from Laurel -- and after you read this, you'll be a little smarter, too! (I found the Cadillac vs. Chevy analogy particularly illuminating.)

Laurel's advocacy website can be found at www.

As a parent, it is likely you know what your child needs defined in their IEP. What is more difficult is coming up with the program, placement, or related service to deliver that what is contained in that definition. Too often, parents are given “one-size-fits-all” options for programming, never knowing what else is out there. School districts typically have a strand (ie: learning center/learning disabilities, autism, life skills) in mind well before your child’s IEP team convenes. How do you ever know for certain what is available, even within your school district? And, even if you do, how can you as a parent be certain it will meet your child’s unique needs? (The saying, “if you’ve met one child with autism, you have met just one child with autism” comes to mind).

Having entered these murky waters both as a parent and a professional working with other families, I hold two schools of thought which might seem contradictory.
The first is simple. Trust your gut. If something seems wrong (too intensive, perhaps placing your child with students with different needs, or not enough), it probably is worth questioning. However, be reminded of the following. In the context of providing a Free Appropriate Public Education (also known as a FAPE) the district is required to provide the special education services that a child needs in order to make effective progress.

In simpler terms, think of the Cadillac vs. Chevrolet analogy. The law requires that each child receive an education comparable to a “serviceable” Chevrolet, not a high-end Cadillac. What this means in terms of services: You shouldn’t ask the team to provide what’s best for your child (the Cadillac), but rather frame all special education requests in terms of what your child needs (the Chevrolet).

As parents, the second thing we rely on is our “experts”. These are the evaluators we hire and pay for (either through health insurance or privately) to evaluate our kids independent of the school district. If your vision for your child’s services and program are even a little at odds with what your school team recommends, you *have* to have solid evidence and data to back up your requests. Is it fair to place a financial burden on already stressed out families trying to advocate for their children with identified disabilities? No. Do families who can afford to hire people like me, or attorneys, have a better chance of success in negotiating (because, in the end, the IEP process is simply about negotiation) what program and services their kids receive? Absolutely. Are either of the above answers fair? Of course not.

As an educational advocate, much of what I do is educate families about programming and services which could meet the needs of their child. Because advocates tend to be retained based on their work and success in certain districts, we typically know the programs actually available versus the limited programs offered. There are not supposed to be “one-size-fits-all” options for programs or even related services like transportation or Extended School Year, yet there are and most parents don’t know they even had options. Nearly every parent that calls me doesn’t know they have a right to partially reject an IEP using the terminology “the omission of _____”.

As parents, we get tongue-tied and emotional and try to appeal to the humanity of the team members. Sometimes, with the right team, focused on the child, this works. Just as often, it doesn’t. When you try to assert your right to reject something, or ask for something different, you are branded the “difficult mom/dad”. That’s why parents hire advocates. (In actuality, that’s why smart advocates also hire advocates or attorneys when things aren’t working). It is my greatest wish that all school district administrators realize parents do things they think in their hearts are right for their kids, because they have their children’s best interests at the forefront. For every gifted, kind, and human team chairperson I work with, there is an unreasonable or clueless one.

As a mom and an educational advocate, I suggest you trust your gut and trust your experts, weighing both with the valuable opinions of your child’s team. Don’t be afraid to advocate for something different. You are your child’s voice and it is your responsibility to act to protect their ability to access what is reasonable and appropriate. And call an advocate, actually call a few and then call their references, if you get to the point where you need another set of eyes and another voice to join your own.

I do this because I care deeply about kids and because people (two phenomenal advocates) cared about my kids and what they needed long before I did this professionally. They helped me find my voice (which was never quiet, but was often overwhelmed and based only in emotion and not in data).

Here’s hoping parents everywhere get the support they need to be exceptional advocates for their kids. I maintain the above-referenced question is not a fair one to ask a mom or a dad just trying to see their child be effectively educated. We’re parents who love our kids and whose hearts soar when they succeed and break when they fall. We’re not the enemy.

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