IEPs for degenerative diseases

Posted Tuesday September 11, 2012 by Melissa

While all special needs can be challenging, degenerative conditions carry with them some very unique challenges.

First, there is the emotional response to realizing that instead of your child being able to learn or gain skills like other children, even those children with special needs, he or she struggles to even hold onto skills and will eventually lose them. Second, as almost an insult to injury, there are often battles with the school system over what is an appropriate education in a circumstance such as this.

Of course, what we’d all like to say is, “Don’t you realize how difficult it is to accept that your child has a progressive and degenerative disease? Can’t you simply help my child in the way that I ask for, me being the expert on this condition here, to make their life as meaningful and enjoyable as possible?” We would like not to have to battle for things with doctors, schools, and others. But sometimes, battle we must.

I recently spoke on IEPs (individualized education programs) at the National MPS Society’s annual family conference in Boston, Massachusetts. One of the points I wanted to drive home was the specific support for treating degenerative diseases uniquely in the IEP process.

Specifically, during the re-authorization of the IEP legislation in 2004, the Individuals with Disabilities Education Act or IDEA, the commentary to the final regulations specifically included language about degenerative diseases. In fact, my understanding is that the National MPS Society, along with NORD and other groups, advocated for this language.

There are dual advantages to this argument. First, you can ask for unique goals and services – your child is likely not like any other child in their system. You might even ask them whether they’ve ever had a child with a progressive, degenerative disease before. It does require a unique perspective on their educational experience. Second, this offers the school some defensibility to others, whether it be their superiors or other parents, as to why your child might receive more, different, or unique services.

Here is a link to download the language regarding degenerative conditions, specifically highlighted. The biggest circumstances in which I’ve found that this language might be helpful are:

  • In circumstances where the child is still doing fairly well, and the school system declines any or significant services based on them not either having a disability or not meeting criteria for educational deficiencies. This language specifically talks about maintaining services which is of primary importance in a child with a degenerative diseases who is still doing fairly well. In our case, I even successfully convinced Case’s school that even in areas where he was doing well, improving those skills was paramount because when he did start to decline, at least he would be declining from a higher point and possibly be able to maintain these skills longer.
  • If the school objects to goals or services to maintain current skills. Hopefully this is rarely the case, but I’m often surprised by the arguments I hear come from some schools. Goals do not have to be simply to improve performance, they can be maintenance goals such as maintaining mobility, transitions to seating, speech, knowing who certain people are, etc.
  • Where the parent asks for more frequent evaluations based on the changing status of the child. Just in the last year, I’ve heard from several families whose child’s school objected to evaluations more frequently than one year or even three (!) years. When a child has a degenerative disease, they should never be forced to operate under the goals or services that may no longer apply given a change in circumstances. Monitoring disease progression – cognitively, behaviorally, and physically – should be of paramount importance in the IEP process. The language specifically speaks to more frequent evaluations.
  • Any other circumstance where a school is determined to treat a child with a degenerative disease like another other disabled child and where it just doesn’t fit.

In addition, here are some additional resources to add to your IEP toolkit that might be helpful:


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