Wondering if (Chicago Public Schools) will ever comply with the laws
EducationNews.org, Tuesday, July 27, 2004
by Betsy E. Borgacz

Having a child with a disability is a life that some know all too well and others never quite understand. Having a child with a disability has never been a problem. When I found out that my son had a sensory disorder, it just gave me a way to understand his world a little better. My companion and I have read every piece of literature possible to understand how our son interacts with his world and how to make the world friendlier to him.

Where we ran into problems was convincing the rest of the people in contact with him to do the same. We have been fighting for over two years for some sort of assistance for our son. First we tried educating the schools through handouts and information packets. Then we tried finding private services. Then we realized that we really had to fight for our son's rights.

For every one of the above steps there was one thing about our family that made things difficult. The fact that we are a family that is below the poverty line. I have been poor since the birth of my son. I have struggled to ensure that my son never suffered or was left out of too much growing up, but for the first time in his life, there was nothing I could do to help him.

When my son, Andrew, was evaluated and diagnosed with sensory integration dysfunction, I luckily had a mother-in-law who could provide us with many handouts about the disorder. She was our stepping-stone to understanding. We in turn shared those handouts with Andrews school.

We had Andrew evaluated the first time by an OT collegue of my mother-in-law. But now we had to find private services for our son. We had Medicaid, and if you know anything about OT's you know that not many accept Medicaid. Apparently Medicaid only pays them $70/hour, which is what they usually get, and they aren't allowed to ask for additional payment. So the OT clinics that do accept Medicaid have waiting lists that are years long. We got on one of those waiting lists.

In the meantime, we were missing a lot of work to go to school to help teachers and staff understand how sensory integration dysfunction(DSI) affects Andrew. We also try to afford equipment for Andrew that will help him deal with stress related to DSI. Everything costs so much, frequently we have to decide whether to buy something that would help our child or pay utilities. Usually the equipment wins out, but sometimes it is not always an option.

Our family will not be getting the latest in treatments and services like what you see on TV, which is a frequent source of guilt in our house. Even with the best tools for Andrew, it could not fix the fact that his school would not recognize how he needed to interact with his world. No amount of handouts, assistance from us, or written requests would make them treat our son with respect and dignity. So after two years of fighting them to get services for Andrew, with no results, we decided to withhold his attendance until they decided to comply. We had to hire a psychologist, which isn't covered by our insurance to help Andrew deal with the emotional trauma he experienced at school, which took a large majority of our money.

We have had our son out of school but still on school roles for a year, we are considered truant. We are still waiting to see if CPS(Chicago Public Schools) will ever comply with the laws that protect our son and provide him with an appropriate education. The way we see it is if we lived in a building where our landlord didn't fix the plumbing then we wouldn't pay the rent, so we decided if the school system wouldn't fix their plumbing we were not going to pay with our son's education, health, and emotional well-being.

Since we took our son home from school we have desperately tried to get CPS to comply with his 504 plan. We wrote letters to everyone including Arne Duncan several times. We filed a complaint with the Office of Civil Rights and frequently ended up educating them on the laws as they did not often know them. Then when the district wanted to ship our son to a school an hour away, we decided to hire a lawyer.

We could have tried to afford a private school by using scholarships and financial aide, but we didn't want other children to suffer because we backed down. We had no choice after talking to many lawyers, but to hire one and put down a retainer fee of $1000, money we didn't have to spend. But because we wanted what was best for our son and CPS would not respond to our notes or complaints, we had no choice but to get a lawyer involved.

I was so confused as to how a school district can just not acknowledge a child exists that I spent all my time researching educational law. I ended up writing a guidebook for parents on educational rights and law. A book that I could have published through a publishing company, but they wanted to sell it, and I wouldn't have been able to afford my own book. Since I wrote this book so that families like ours wouldn't have to go through years trying to understand the system, I decided to offer it for free online.

But as I am offering it for free, it didn't really help our situation get any better. Outside of a few more people knowing my name. We still live with barely a few coins to pinch together and way too many legal and medical expenses. We still have the inability for both of us to hold jobs as we can never count on daycare working out.

After a year of being educated at home by his father while we were waiting for CPS to comply with our son's 504 plan, Andrew went from reading at a kindergarten reading level to a 3.5 grade reading level. Just by meeting our son's sensory needs and truly trying to understand how he learns things, he has been able to really progress. Something that could have easily happened at school had his needs ever been addressed.

Although we cannot afford to pay for services for our child, at least he can read now. We have been fighting for every little thing for our son for over two years now, and we are tired. Our money is gone; our sense that people will do the right thing is gone. And we are constantly faced with the reality that it might not be so hard if we had money. We would have been able to pay our lawyer upfront for everything instead of paying $25/month just to be dropped at the last minute because it wasn't financially beneficial to pursue things any further. Our son finally got into an OT run program to help him deal with the stress of meeting his sensory needs when with others, and we have run out of money to send him. We have a summer camp that we trained the staff and now they are so proactive in their interactions with Andrew, and we don't know how we will afford the train fare to get him there every day. Like I said, having a child with a disability was never a problem, but living in a world in which you cannot get services for your child without money has made it very difficult and often has devastated our family in many ways.

We are still trying to get him ready for his upcoming school year at a new school in CPS that seems promising. We hope to prepare Andrew for his new school in September and help him adjust emotionally to this new transition. He is very afraid of a new school, as are we, but we hope that because we have fought for his new school to be trained in DSI before the school year ended and once again at the beginning of the year that at least there will be more school wide understanding.

I hope that this story could help some other parent going through what we have feel not so alone. I also hope it will raise some understanding that not all parents have the ability to give their kids the services they need or the equipment they need to empower those children with disabilities to be happy children and happy adults.

Betsy E. Borgacz
One Parent To Another
http://oneparent2another.4t.com
parentguidebook@yahoo.com