Sunday, January 10, 2010

Down Syndrome Awareness -- Today's Segregation is Yesterday's Institutionalization... And Tomorrow's Mainstreaming

New York is ranked the second worst state in the USA for segregating children with disabilities from the general population. Nassau County is the worst county in the state, responsible for bringing the rest of the state down on the list. How did we get this wondrous status?

New york State was a front-runner in addressing the needs of children with disabilities via institutionalization when that practice was the best scientific thinking on how to raise such children. When the research showed that children with disabilities raised outside of institutions fared so much better than their peers locked up in hospitals, New York State rightfully jumped, albeit slowly, on the deinstitutionalization bandwagon and stopped institutionalizing as a general practice. In an altruistic effort to address the educational needs of these newly freed children, New York State developed a vast and effective special education infrastructure that applied the best new thinking in educating children with special needs. The children were segregated and educated according to their special needs separately from the general population... though they remained in their homes with their families. The best of both worlds was the thinking.

Fast forward a few years and here we are... 2010... and the thinking has changed once again --though not so recently -- on how best to address the educational and social/emotional needs of our children with special needs. Today, the research shows that children with special needs thrive in the same environment they share with their typical peers. The current thinking posits that a child with a disability should be placed in the same environment he/she would be placed in had there been no disability and then supports should be added to help that child function maximally in that mainstreamed environment. This is called the Least Restrictive Environment (LRE). In NY, there's a lot of more-restrictive environments available because of the existing infrastructure from the old-school of thought. From a budgetary perspective, this infrastructure needs to be supported... physical buildings and personnel need to be maintained. To do so, children must be enrolled. Unfortunately, this need is in direct opposition to what the research says and flies in the face of the spirit of the LRE laws. The dilemma: support the infrastructure or mainstream the children with special needs. Though New York's been doing it for years, it is outdated and ineffective methodology... and a terrible waste of funds that could be better put towards the support of children with special needs in the mainstream environment.

While the current thinking supports mainstreaming with appropriate support, the laws are only just beginning to support the current thinking. And, unfortunately, the reality falls a bit shorter than that. I've been giving this a lot of thought lately given the push for out-of-the-ordinary services for my boys... And I've been wondering how the world of educating children with special needs ever morphed from institutionalization to segregation to where we are today... in transition again.

It happened because parents like me, parents like you, parents like all of us who fight for what we know our children need regardless of what's recommended by the status quo. We push the envelope. We reach higher, further and into the deepest corners of our education systems to solve the puzzle. That's how change happens. One child, one IEP, one therapy session, one out-of-the-ordinary approach to education at a time.

What would I say to that very first mother who brought her baby home with his diagnosis of Down syndrome rather than putting him in an institution because she saw more in her child's future than what the textbooks said was possible? I'd say, "Thanks for believing!" Here's to positive change on behalf of all of our children!


  1. Have you heard about the huge Buddy Walk going sown in Washington DC in Feb? I'm going to post about it. You are so good at writing about these issues! My SIL is a special ed teacher and for many years she taught in a "special school", Vt is way ahead.