Welcome to an ongoing series focusing on special ed needs and autism. For an introduction to the author and activist, Mary Romaniec, click here

For an article on Mary's success in turning around her son's medical diagnosis of autism, click here.

 

TIME TO PUT DOWN THE POM POMS AND GET TO THE GAME

A.K.A.

  It’s time for parents to organize for a better education system

Let’s face it.  Times are tough and getting tougher when it comes to education in this country.  Between test scores, educational mandates and cash strapped school districts, is it any wonder that U.S. schools are failing to educate so many of our children?

Now, toss into the equation children with special needs whose educational curriculum consists of additional services just to be able to access the ability to learn.  For many of these children these additional services define whether a child will succeed in school or not.  With up to 30 percent of all U.S. kids facing potential learning disorders and 17 percent of them on Individual Education Plans (IEPs),  the U.S.  cannot afford to lose this population of children or it will face economic and social disaster of huge proportions.  Parents see  this all too well as they look to what the future holds for their special needs child in this competitive world.  And what they see causes alarm!

What has become increasingly evident is the will of many school districts to face the financial hurdles by developing a division between families of special needs children with the rest of the community.  It is sort of a conquer and divide from within and it is done in a myriad of ways.  Superintendents and school committees are publicly blaming special education costs for the reasons their district faces financial troubles.   In other words, the special needs child all of a sudden is no longer looked at as part of the general student population.  They now have a dollar figure attached to their educational well being in the eyes of the district, and now with the community at large.

Parents for their part are guilty of two things:  1) naively believing the school district will always do what is right for their child without the parent asking and 2) not organizing collectively to fight the universal non-compliance issues in their district.   And virtually every district has their areas of ‘needs improvement’, even those with good intentions to meet the needs of all of their students. 

So what is a parent to do to ensure their child’s rights are protected and their child’s  curriculum is appropriate?  First, each parent needs to be educated on what their child needs and what protections are in the law.  Okay, so it sounds like a huge course in special education law for which any parent is ill prepared to tackle while dealing with the constraints of running a family.  However, the better prepared a parent is to advocate for their child the better short term and long term outcome.  Suffice it to say there is quite a bit more between eligibility and long term outcome that goes on but getting educated is the key to being an articulate, effective advocate.  I like to say “No one messes with this mom” as a way of saying I’m educated on my child’s rights and willing to do what it takes to protect them.  But they also know I am willing to go to the mat to help them help my child to succeed. 

I moved to Massachusetts from California about three years ago and quickly became involved with the special needs community.  I had voiced a complaint to the school committee about a policy they had of not allowing my IEP meeting to be tape recorded.   They said it was against the state law.  I checked and discovered there was no such law and therefore it was a policy that could be changed.  Within three months that policy was changed with the rallying of other families in town who also wished to tape record their child’s IEP.   Within a year,  we organized our focus and approached the school committee with other proposals.    We continued to solicit, make in-roads and stir up support in the community by being proactive and outspoken on the need for change.

Finally the state came down and cited the district for many of the areas which we saw as needing to change and they gave the district a deadline to submit their proposals for new procedures.  Unfortunately the administration used this as an opportunity to completely re-write special education law.   They put forth a proposal to allow for related services (speech, PT, OT, etc.) to be missed up to 30 percent of the time and not be made up.  For those of us who understood what this meant, we were dumbfounded.   How did they think this would fly and who was going to stand for it?  Well, obviously our voices of dissent had not been loud enough in the past so now we needed to bang the drum. 

What happened after this announcement of intent to allow for missed services opened the proverbial Pandora's box.   Parents were incensed and voted at a committee meeting to file with the Office of Civil Rights for a violation of Federal 504 laws.    This is a little known agency but a good one to use  for parents who have tapped out their avenues with state mediation or due process.  Filing with the OCR allows for families to ensure their district complies with federal mandates or face losing federal funding.  It is most often used for individual complaints. We happened to be the first parent group in Massachusetts to bring class action against a district so it became high profile to all involved.   

Collectively the parents have finally had enough and are holding the district fully accountable.  For their part the administration has “lawyered up” instead of trying to fix their overall issues of non-compliance.  It came back to haunt the superintendent when he petitioned the town’s finance committee for more funds for his budget.  The finance committee asked him if he would speak to how much the OCR claim was going to cost the town.  He had to admit the legal bill was so far in the thousands of dollars, which is a shame since all families would prefer the funds went to our kids instead.

The reverberations of our actions are now being seen as other communities consider similar actions.  It has become a rallying cry for parents and a wake up call for school administrations.

In the long run it becomes a tragedy to have the divisions between families and school districts.  The common good would be to work together to have enough funds for all of our kids whether it be lobbying our legislators or combining efforts to make the education system work in our towns. 

Until that happens the ones caught in the middle are the children.   It is up to each of us to ensure they receive what they need to reach their greatest potential.  And to that end “no one messes with this mom.”