February 17, 2010

The Big Picture and the Little Kid Stuck Inside

Trying to write two blogs a month isn’t easy. There is so much to say about so little. It could be every day, or every week, or maybe nothing at all because it feels so hopeless. Every newspaper article, research piece, or media event involving kids with disabilities has a particular spin. But when you work with children every day, with their families, you experience the chasm between public discussion and the reality of daily life in special education. New Jersey has a class action suit right now to again push Inclusion. More about that in a week or so. But who in their right mind would put together a case on Inclusion in order to take away the few placement options that are out there? Then there are still the get rich lawyers who continue to do lecture tours for parents about their rights. When did they litigate their last case? Or take a pro bono case? This is all old news. This old news, however, is now circumscribed by a Supreme Court decision that says corporations are people, and can give unlimited amounts of money to candidates running for office. Think about the lawyer lobby, all of the groups involved with running schools, those organizations for school psychologists, social workers- an unlimited list of special interest groups who increasingly control every aspect of Congress. Then think about the lobbyists for parents with children in need of special education. Do the math. Parents= 0. Lobbyists= $$$$$ (Unlimited resources). So much for reality. What else is happening right now?

1. The 5th edition of the Diagnostic and Statistical Manual, the psychiatric encyclopedia of mental disorders, is now out in draft form, the final version to be completed by 2013. This manual is one of the most important in special education because it gives symptoms of disorders that help to define the student’s disability, and often pinpoints where instruction is needed. The proposed recommendations can be found online at DSM5.org. The ramifications of adding new labels are enormous for the drug industry and for the children who will now meet the criteria for newly recognized diseases. Increasingly, schools are demanding that children be medicated if they are to remain in their classroom. And the task force revising the manual wants to trade the term “intellectual disability” for “retardation”. It looks like some lobbying has already paid off.

2. Young children with suspected development problems may not be getting needed referrals (eurekalert.org/…/jhmi-cws012610.php) Even though pediatricians screen children for developmental delays, they often do not refer them for further testing or treatment (Pediatrics, February 2010). Even when pediatricians referred children, it was either to a specialist or to early intervention, but not both. The most common deterrent for doctors to use screening tools for children was the time it took which slowed down patient flow. Key among the developmental areas is speech and language development, an area frequently missed by pediatricians. Guidelines for speech and language development by age can be found on the website of the American Speech-Language-Hearing Association:asha.org/public/speech/development/chart.htm. (See also When to Worry if a Child Has Too Few Words, Perri Klass, M.D., The New York Times, 2/9/10).

3. Sensory Integration. This has become a personal passion of mine because of its power to help children when nothing else can. Many OTs lobbied for it to appear in the DSM 5. So when my husband saw the newspaper headline “Pass the Squishy” (Jennifer Medina, The New York Times, 2/7/10) he gave it to me, saying “This has your name on it.” A Bronx charter school has young elementary age children, many with behavioral problems. Of all their supplies “none matter as much as the squishy”. A 6 year old ran screaming from the room, the only thing able to calm him being the purple squishy- a colorful rubber ball with dozens of tentacles. This school is specifically designed to serve children from broken families who are in foster care, and are among the most difficult to educate. Some children have a “2 squishy” or “3 squishy” day. This sensory comfort is safe, cheap, and effective. I use it all the time. Maybe someday such common sense will creep into special education.

4. President Obama’s proposed budget provides a $250 million boost for special education, bringing federal grants to the states to a total amount of $11,755 billion (disabilityscoop.com/2010/02/01/…/6810/.) This will likely be modified before it goes into effect. Where is the transparency of that money? I’ve asked New Jersey for an accounting of its early intervention money and did not even get an answer. (Arne Duncan, look for my letter about this.) Money, money everywhere, and not a drop to drink.

In the middle of corporations now viewed as people, and special education existing in name only, what is a family to do? Accurate information has dried up as never before. Money, of course, controls that, too. Parents are doing everything they are told to do- include the child in regular education, agree to the recommended methodology and program. And often the child gets worse. Then what do they do? Here is a true story.

I work with a family having an autistic son. The mother is a teacher in an urban school district where her son is also enrolled. She “believes” in Inclusion because her son has potential and she has been told he has the right to be with nondisabled children. He has a 1-1 aide. He received a method called ABA in the general education classroom. He has become violent, biting and punching his aide, and completely disintegrating in his classroom. His evaluations make it clear that he needs something quite different than ABA, but the parent never understood this. Suddenly, the school wants to remove him from the class and put him someplace else. No discussion of developing an IEP. No discussion that the special education he receives in no way matches a list of his needs found in his evaluations. The child is being blamed for not achieving success- this beaming boy with twinkling eyes and a laugh that rolls up from his belly like a tiny Santa Claus. But, too bad for him! He bleeds and he hurts. He cries and asks to go on the swing to feel better. He is not a corporation and cannot control anything by buying votes and candidates. When will this terrible, inexcusable mess get better?