Our Dirty Little Secret

I want to share with all of you an example of what parents of children with disabilities go through in New Jersey. Sadly, this is not new, nor is it likely to change anytime in the near future. There needs to be a fundamental shift in how NJDOE/OSEP view these students, how individual districts view them, and how communities value them (or don’t).

This happened in my home K-8 district in Bergen County. This is a beautiful, close knit community. We take care of each other, we have very active civic organizations, and we even have two small, well-embraced, adult disability housing facilities. What we don’t have is that kind of support for the families who happen to have children with disabilities. It’s our dirty little secret.

Parents struggle to get evaluations. Scratch that, they struggle to get anyone to take their concerns seriously. Their teachers generally do, but are afraid to speak up. Parents struggle to get classifications and appropriate services. The district is adept at dragging the process out as long as possible (sometimes years), many times by simply not explaining the process to parents who have no idea how any of this works.

As you read this statement, made by a father, please remember that as parents, part of our job is to raise children who can make their way in the world as independently as possible and to become functioning members of society. I am absolutely sick of districts getting in the way.

It’s difficult to stand here and speak about the state of and the attitude towards Special Services in this district knowing it falls on deaf ears and has no apparent effect on the continuance of the treatment of the families in this town. The fact is that [Sparkly District] has an awful reputation with regard to their treatment and programming for special needs children and their families and it is evident that this works just fine for you all -- if it didn’t, things would be changing.

Maybe you are blinded by your personal feelings towards specific members of the community who fight for this population’s rights. Maybe you have grown too familiar with one another and cannot separate or comfortably voice your own personal opinions, experience, or agendas if they differ. You are professionals and our children are counting on you. To continuously ignore, deliberately avoid, and create a divide within the educational community you serve is a disgrace to your positions. You may start by seeking professional guidance and perhaps attempt to gain some understanding of the population causing you all so much aggravation. Maybe then you could begin to understand that this goes far beyond the here and now for our young children.

This is about our children who are suffering and in my case a child in crisis due to educational neglect and incompetence. Those words may seem harsh but in the two years we have been fighting for my daughter’s rights and needs, we’ve had horrifying experiences. We’ve had a district sub nurse assure me she is familiar with insulin shot protocol and then inform me she isn’t sure if she gave my child 4 or 8 units -- the 8 units would have killed my daughter. Following this incident I was then accused of abusing my daughter’s 504’s attendance policy because I rushed from work to pick her up. When we brought this up we were told, “It was a one off and to move forward” by an administrator who was unaware that this nurse had been hired for the remainder of the year. Remember that this is a child’s life we are talking about!

This year my daughter continued her struggle and began acting out and running away…again, we had been fighting to address her needs to avoid it affecting her schoolwork and functioning. Prevention costs far less.  An evaluation was finally agreed upon…a one-on-one aide was assigned to her due to her running away or “elopements”. In February, the school lost my daughter for a period of time that changed each time it was questioned. The story changed as well from initial contact to a scripted formal response that took nearly 24 hours to put together, and then further adjustments to the story were made in the letter that followed…Our lawyer doesn’t buy it, and neither would you if it were your child -- after all, how do you lose a child with a one-on-one aide that is placed with her because she runs away?  The only story that never changed was my daughter's and that of her classmates. Parents talk.

My daughter is just coming out of crisis mode and will thankfully be in an out of district placement. Two years of fighting for services and support -- being told I am “handicapping my daughter” by requesting such support.  I sat through meeting after meeting where her medical doctor and counselor’s insights and orders were completely ignored. This is unacceptable…either start to collaborate reasonably or own your ignorance, apathy, and discriminatory reputation. Enough is enough of excuses and well-crafted responses.

Neglect and incompetence…that is the new growing reputation of the [Sparkly] School District and not just among the Special Needs community. Our children impact their classmates-parents talk -- and the tide is turning from apathy to empathy and disbelief. That is a fact…a fact you continuously ignore despite what you have heard from so many and more to come. Just because you are [Sparkly District] does not make you exempt from the reality facing all districts today. The sign of a truly great district doesn’t come from carefully crafted test scores and superficial awards. It comes from fulfilling the legal obligation to provide an appropriate education to all children…you fail over and over again at this. You have the teachers who are more than capable -- you need the administration to lead them and the backbone and ethics as a professional Board of Education to do what is not only your legal obligation but what is right for all of our children.

I understand that it was difficult to educate my daughter with the special needs that she has.  However, you failed to identify and find the appropriate resources over the course of a two-year period subsequently resulting in the fact that you had crushed her spirits and represented school as a frightening and lonely place to be. What young child with disabilities could flourish in such an adverse environment? It is my hope that my daughter and other children with challenges and disabilities never experience such an unwelcoming and unsupportive environment again in their formative years!

With that being said and on behalf of our family’s devastating experience here, we are furnishing you with the required copy of the complaint we are filing with the New Jersey Department of Special Education Programs.