The Nitty Gritty

Grace “graduated” from her partial hospitalization program (PHP) last Friday, and she is home once again.  I toured her new school last week, and it is exactly what I hoped it would be.  The staff and teachers are informed, educated, and gentle.  I did observe a para in action and found him to be quite strange but perhaps that’s just his way.  The facilities are brand new and gorgeous.  When I met with the social worker, one of the teachers, and the facilities director to discuss Grace, they seemed to understand everything I said.  When I asked them how they would handle certain situations, their answers were the right ones.  Clearly, they’ve done this before.

This is where the teachers from this district got it right, and I’ll write about it because a present or future reader might need this information.

Firstly, my school district is a member district of something called an intermediate district.  This intermediate district was designed to serve a population of students with special needs.  Those needs are varied.  Students might have autism and require additional services that can’t be met in a mainstream classroom.    Students might have conduct disorders and require additional supervision with even a police liaison present.  Students might have mild to severe forms of mental illness which prevents them from being mainstreamed.  This school has a program for teen girls who are pregnant or who have just had their babies and need to continue their education.  It also has a daycare for infants.  This is all to say that there are myriad programs for special needs students, and the ticket in is the IEP.  There are a few types of IEPs that will get a student into this intermediate district.  The first kind is the Emotional and Behavioral Disability IEP (EBD-IEP).  Qualifying for this IEP is difficult, and the process is elaborate.  One of the requirements that must be met in order to qualify for this IEP is an FBA–Functional Behavioral Analysis.

An FBA can be very useful if you have a child who is more behavioral than emotional because the FBA allows one to ask the question: What is the function of this behavior? In times past, teachers and parents would look at a child who was misbehaving and label behaviors as “bad” or “good”.  The FBA allows us to look at behaviors and ask ‘why’ rather than strictly labeling them.  For example, using my youngest daughter as an example, she will occasionally self-harm in the classroom.  This is, of course, an unwanted behavior, but one must know why she does it before it can be changed.  What is the function of her self-harm? What precedes the self-harm? Is she anxious? Is there a change? Has there been conflict between her and someone else? These are the questions that come up in an FBA, and the goal is to replace the maladaptive behavior with an adaptive behavior that will help the student flourish.

Grace’s school district was very insistent that they evaluate her under the EBD-IEP whereas the intermediate district that evaluated her at the PHP refused to evaluate her under an EBD-IEP and instead evaluated her under the Other Health Disability-IEP (OHD-IEP).  What’s the difference? The FBA is the difference.  Let me explain further.

What is the function of mania? What is the function of hallucinations? What is the function of paranoia, delusions, and major depression? These are not behaviors.  These are the manifestations of an organic brain disorder, and one can’t perform an FBA on bipolar disorder or schizophrenia.  The teachers at the intermediate district knew and understood this.  The special education staff at my own district refused to grasp this.  The only way they would proceed with an evaluation for Grace was if I let them do an FBA on her.  When I suggested an OHD-IEP, they informed me that an OHD-IEP was only for children with ADHD.  That is wrong, and it’s also a misapplication of state and federal statutes.  The amendment to the statute regarding ADHD was added later so that children with ADHD could get services under an OHD-IEP not to the exclusion of all children without ADHD.

So, in the end, what kind of IEP will Grace have? Grace will have an OHD-IEP because Schizoaffective Disorder-bipolar type is not inherently an emotional and behavioral disability.  It’s a disability to be sure, but it’s another kind.  This is why Grace can’t go to therapy and make her issues get better.  She can learn coping skills and strategies, but her primary way to manage her illness is through medication compliance.  That kid has to take her pills! Every damn day.

This kind of understanding of your child’s illness as well as an understanding of your state’s statutes concerning educational disabilities and IDEA is what it takes to get your kid the proper IEP these days.  It’s also very important to remember that any state statute cannot override a federal ruling (unless you live in the 8th circuit it seems).  The so-called experts are not experts on your child, and they might not know that much about your child’s illness.  Schizophrenia spectrum disorders are very rare in children, and there wasn’t an educator at any school or district that I’ve met who knew a thing about it.  The school psychologist from the intermediate district didn’t even know that executive function disorders and schizophrenia are commonplace and well-known.  I sent her abstract after abstract via email to inform her so that she would be better educated about the working memory of children with early-onset schizophrenia.  This woman is the one writing her IEP after all.  I even asked Grace’s psychiatrist to speak about it at her IEP meeting so that everyone present would be better informed.  At this point, this isn’t just about Grace.  At some point, there will be another child who will have a schizophrenia spectrum disorder, and, hopefully, both districts will be better informed and better prepared to meet the educational needs of that child.

In case you live in a district that is as draconian and willfully oblique as mine, here is some very helpful information taken from the Federal Register (Fed. Reg.  at 46550):

The list of acute or chronic health conditions in the definition of other health impairment is not exhaustive, but rather provides examples of problems that children have that could make them eligible for special education and related services under the category of other health impairment. We decline to include dysphagia, FAS, bipolar disorders, and other organic neurological disorders in the definition of other health impairment because these conditions are commonly understood to be health impairments.

Because there are only a few health impairments specifically listed under IDEA, this comment on the Federal Register will be your friend if you have a child with a disability that is not emotional or behavioral in nature or is more authentically a physical health impairment but can be misinterpreted as behavioral such as Tourette Syndrome although Tourette Syndrome was just added to the list of Other Health Impairments in 2006.

Always remember: You are the expert on your child.

Helpful links: Federal Register complete with comments and Rules and Regulations.  This is some dry stuff, but it’s gold.

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9 thoughts on “The Nitty Gritty

  1. Must have been very reassuring when the staff knew what you were talking about and how to react to it!! Breathing any sighs of relief?

    • I think I’ll finally be at ease come January 2. That’s the day she walks through the doors. I’m still waiting for the IEP to be finalized. You’d think we were writing a peace treaty or something.

    • That’s so good to know. That’s why I wrote it. It took me months to figure it out, find the Federal Register, find that one little bit about OHIs which is on the 4000th something page! Phew! So, I’d rather that no one else have to deal with that. Yes, do pass it onward! That’s why it’s here.

  2. Pingback: Yes, I Do Want Some Cheese With My Whine « Empowered Grace

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