April 1, 2009

Looking to the Future

Why do I continue to write this blog and maintain this website? Is it a monument to outsized ego? Is it the musing of an old lady telling stories about the past? Is it a myopic rant in various permutations about lawyers? It may be a little of all of those things. I am certain that the history and evolution of who will be allowed to practice law has many seeds sown in my special education garden. And nobody will be able to find this history unless I write it down. Three decades after special education was born leaves a fractured, sometimes untruthful record of its successes and failures. The majority of the books written are sold to tell anecdotal stories, sell a product, fulfill the requirements of a grant, or give advice about how to improve parent success within the public school system. Nobody was attempted to integrate the experiences and viewpoints of parents, educators, school administrators, clinicians, doctors, lawyers- and the children who receive special services. Think about that for a minute. Why is that? This silence and lack of discourse within the special education community should raise every red flag. It is a dangerous thing to be so polarized in your thinking that only one view is acceptable on a specific issue. That fact, all by itself, is enough reason to keep this “Gloves” project going. As for the legal establishment? It deserves a good rant!

It is true that unless we know the past we cannot plan for the future. And that is the point. We cannot fix yesterday. How many of you have the time to look at a variety of government websites on special education, as well as those from national and state organizations? If you did, you would see clones of each other, each in their separate camps of Inclusion, COPAA affiliates, autism activists, learning disability groups, federally funded protection and advocacy sites with their accompanying parent training and information centers. A few provide useful services but not many. The reason the old training programs and activist activities do not work is because we are living in new and unprecedented times. The certain truths are that almost no IEPs are individualized, most parents have no idea what their rights are, public school personnel continue to have little idea about what special education is or the laws that control it. The broken economy gives an excuse to the public systems that abandoned special education years ago. So how do we change it? We must look to the future and make some hard choices.

I know how difficult this is. After the U.S. Supreme Court decision in 2005 that refused nonlawyers payment for their work when parents won due process cases, the organization I’d run for 25 years, the Parent Information Center of New Jersey, had to be dissolved because there was no money to fund it. Those it affected the most were the new leaders who took my place. Some still have not recovered. Our passions and pride for what we did created a self-reinforcing environment that always came back to the cases we did together and the war stories of battles won and lost. That is true no matter who we are or what job we do. But we cannot get stuck in the past in a perseveration that constantly repeats the same movement and phrase over and over again. Those now working in special education at state and regional levels are not looking to the future as they offer the same old training programs year after year to each new generation of parents. It is their job and they need a salary. But if the General Motors CEO can be forced out after 30 years because his car company was inefficient and financially bankrupt, why can’t the folks running special education be fired so that we can put together a new and improved system of educating children with disabilities in a more comprehensive and cost-efficient manner? For special education has more waste and inefficiency than any bank or automotive industry every thought of having. When the product you sell cannot be seen for years, such as the benefits of education and related services, it is easy enough to lie about it. As bad as general education is, few really understand how God-awful special education has become. And as long as the money continues to flow without any checks or balances it will get worse, regardless of how much money Obama gives it.

Now, a story. I’m teaching full time now, so that kids are being referred by the bucketful. It is in working with these newbies that you see the future and the present, both resulting from the inequities of the past. An agency recently referred a single mom and her 10 year old son. He had just been reclassified as Emotionally Disturbed from Multiply Handicapped. Evaluations described many behavior problems along with leaning “problems”. I agreed to one visit just to give her input and try and steer her in the right direction. Mom and son are black, without money, and trying to fight for survival. Things didn’t add up during the intake and record review, so I asked to meet the child. Fatal mistake. In a case load already too big, he was too good and too sweet to let go. He cannot read- at all. Doesn’t know the alphabet, cannot string two sounds together. He is in a “Literacy” class in his special E.D. school. It turns out he is a singer and makes up rap songs. Suddenly, out came vocabulary and rhymes and complete sentences. As he relaxed, I encouraged him to dance to the alphabet song- put a groove on it. Did he want to know what his rap words looked like? He did. We ended the second lesson with him being able to explain the difference between vowels and consonants and say the vowels. It was a major triumph for him as he bopped his way out of the door. There is nothing new or radical about this. I taught this way in the 60s and 70s. The issue is that no place in his records did it say he was completely unable to read. No strengths were identified. He needs a certain kind of help and so does his mom. She watches and sometimes smiles.

The future of special education hinges on the reforms of general education. So as we wait to see how that evolves, science has been with us a long time about dyslexia, about what constitutes proper evaluations, about child development. We know that young children don’t need computerized instruction, and that those under 5 require play and socialization more than reading readiness. I’m so glad that a current study on dirty children confirmed that if they are too clean they are less healthy, lacking herd immunity. Good thing, because a lot of my kids dig in the dirt and make gardens. We know that we must work with entire families if they and the child are to succeed. Schools must focus on the entire family and not just a stilted interpretation of academics for students in a classroom. All agencies involved with children and families must merge, and the school must become the center of the community. Technology and learning how to live in a changing climate with fewer resources are not topics for future discussion. They are Now. Taking care of our bodies, and being aware of the food we eat means better health at less cost. That is not the future. It is Now. It is part of our children’s education for life in this century. None of this means a throw-back to the hippie movement and the feel-good times. It has to do with how we get to where we need to go and the measurements we use to gage success. It has to do with breaking down barriers between the arts and sciences so that each can assist the other in developing programs that work for kids and that improve the lives of children. It has to do with sharing turf between fields and building new alliances between educators, scientists, artists, farmers- everybody.

And added to this mix will be the enforcer. If we recreate general and special education in a new image of a different, more complex view of individualization, there should be very few disputes. It is difficult to disagree if you involve all those who work on the entire child and the entire family. But when disagreements arise, as they surely will, there must be somebody there to represent the child and family. Within the transformative look to the future must be nonlawyers and lawyers alike, at the local level and immediately available. This is not a utopian vision, but a genuine look at the Possible and, if we work hard enough and smart enough, the Probable.