The fight for special education is worth it — for families and Kansas’ future

Kansas Reflector welcomes opinion pieces from writers who share our goal of widening the conversation about how public policies affect the day-to-day lives of people throughout our state. Inas Younis was born in Mosul, Iraq, and emigrated to the United States as a child. She is a writer and commentator who has been widely published in various magazines, websites and anthologies.

There are so many battles not worth fighting, so many hills not worth climbing. There are so many holy wars being waged against the very laws of physics that most of us don’t have time to register them, except maybe through a tweet.

But there is one battle that never escapes our attention. That is the battle for our children: The battle for their safety, for their education and for their future.

For parents of special needs children, that battle is paradoxical. Fighting for our children has often meant not fighting at all. We are so consumed with their care that we are compelled to forgo political activism for practical survival.

Some of the hardest struggles we have had to forgo are those with our education system. Becoming entangled in years-long battle with a system that refuses to meet its legal obligations often becomes a choice between caring for our children or addressing systemic problems. The time and energy and cost of litigation ensure that whatever recourse parents may have remains superficial. Complaints get filed, grievances are aired, meetings upon meetings usually end up yielding nothing but a sense that you are at least moving, even without direction.  

When it came to my own special-needs son, we chose to put all of our time and resources towards fighting for him as opposed to fighting against the system that failed him. This was no heroic act on my part. That decision was made for us when the principal of his elementary school simply called me one day and instructed me to “come pick up your son and don’t bring him back.”

At the time, I knew that this school principal was in violation of the law. She had no right to order me to keep my son out of school. But I also knew that she was prepared to deny that she had said this if I ever reported her. And I am not the only one with such experiences. Many parents have had to maintain a defensive posture against school systems that assume an equally defensive posture against the accusation that they are not doing everything they can.

For a few weeks, I waited for a citation of truancy. I even welcomed it. But nothing arrived, no one came to my door, and no one ever asked about my son again. It’s as if he had dropped off the face of the earth.

Clearly, they were relieved that I had followed through with the principal’s orders. And I was admittedly relieved from having to deal with school officials. I was relieved of large spiral binders full of intimidating documents and tests. I was relieved of meetings that bore no fruit except to delay action.

For many families, including mine, advocacy became a sort of game, a kind of proxy war between parents and educators funded — or in this case not funded — by legislators who maintained a comfortable distance from the real and damaging implications of the decisions they made in Topeka.

Special education in the U.S. is based on the Individuals with Disabilities Education Act, or IDEA, which requires that school districts “provide individualized, appropriate, and free education for children with disabilities.” In addition to academic instruction, some students require physical and occupational therapy. When schools do not or are not able to provide this because of cost, they have to dip into the general school fund to make up the difference.

The idea that my son’s school would have to use general education funds to meet his needs not only induced guilt but encouraged my silence. Lack of funding, not willful malice was the narrative I internalized to help me overcome our frustrations of failure.

Eventually we did what every parent in this common predicament does and converted our basement into a school and therapy center. We provided my son with every imaginable service at a cost of thousands of dollars per month. This often means that one parent must work all the time to keep up with the obscenity of mounting therapy bills.

Insurance companies were another behemoth no one had the time to tackle. And this predicament was not unique to us. It was not unheard of for people in the autism community to be $90,000 or $100,000 in debt due to therapy bills.

It became an inside joke among parents of special-needs children that the only difference between us and other families is that we were sending our children to Harvard every single year for the rest of their lives. The cost of the most basic traditional therapy was comparable to sending your child to an Ivy League school, only without a graduation date.

Money is no object became our refrain.

But of course, money is a very big object. It is the object that keeps parents and schools at odds with each other. It is the object that devastates families, who then have to go into debt to pay for very critical services. It is the object that has parents literally giving up on their parental rights so their children will qualify for aid.

This year, Kansas had an almost $3billion surplus. This year, I was convinced that special education would finally be fully funded, and  peace would arrive between parents and schools. Despite this windfall, some Kansas lawmakers still chose not to fully fund special education.

Money is technically no longer an object. But now I fear that our public schools, and by extension special education, have become the latest proxy for our culture wars. The state is again falling short of its statutory requirements for special education funding and schools will have to continue to use their general operating funds to cover what the state owes for special education.

To read about it, one might conclude that the subject is more complicated than just funding. But it’s not complicated at all. It’s quite simple. When you do not fund special education, you set off a spiral of events that not only destroy our public schools but will ultimately destroy the very foundation of our state’s workforce. You end up destroying the very thing you claim to be protecting.

You devastate all Kansas families, and not just those with special needs. 

Through its opinion section, the Kansas Reflector works to amplify the voices of people who are affected by public policies or excluded from public debate. Find information, including how to submit your own commentary, here.