In 2011 my family built a home in the East Greenbush School District in Rensselaer County NY. It was a perfect location for my multiply handicapped granddaughter. It offered a special needs classes (K-8) embedded in district schools where every opportunity for inclusion was present. The middle school program is no longer, and the elementary school program will be discontinued. These programs have been moved to a vacant middle school in the neighboring school district where they are isolated from their non disabled peers.
Before weighing in on the wisdom of such moves, I believe it is incumbent upon me to state as clearly as I can the basis of not only my policy judgements but genesis of my passion in such matters.
I am 77 years of age.. Growing up in the 40’s and 50’s a child occasionally heard the phrase “my mother is going to have a baby”. On rare occasions that would be the end of it. No child was forthcoming. Silence was often attributable to death at birth or the silent placement of a handicapped child. Such were the days of “institutional care”.
I was spared the ignominy of any complicity in the shameful public policy at that time. My family was always caring for someone and our home was open to one and all. I cherish the life long relationships that sprang from the closeness I had with those who were multiply disabled.
In 1964 I joined the staff of a very progressive child protective (abuse) unit. There I saw the ease with which we can ignore the isolation and needs of children. In early 1970 I joined the NYS Office of Mental Hygiene wherein I was part of a team resettling handicapped people from the infamous Willowbrook State School. Our team was part of the newly created OD Heck Developmental Center which itself devolved over the decades and became infamous in its own right, giving birth to Jonathon;s Law.
I now am a grandfather and caregiver to two special needs children. This role was the impetus to founding NYS Rare Disease Alliance and catalyst for our column Chatting with Haley and Poppy.
As a frequent flyer at Albany Medical Center’s pediatric unit I was asked to lecture MD’s in the Medical School about the needs of medically complex children and their families. It helped me sharpen my sensitivity to deficits in professional practices.. Common sense dictates that no one can know everything and when it comes to rare conditions the odds are overwhelming that professionals don’t know. The display of ignorance is often obvious to caregivers and parents. In medicine, this generates fear. The heart of my lecture focused on 3 things I observed about MD’s when facing rare syndromes. First they did not know the syndrome; second that was frightening to them and third they had no colleagues on which to rely for consultation. Next I told them I understood; and that fear and ignorance was OK. What was never OK was denying these things were so.
I can tell you from experience that caregiver leverage in medical care (which is little) is a little better than in education where fear of malpractice seems never present and your status as colleague seems out of reach.
That does not mean we cannot try. So I will try.
If you take children, with limited expression, locked up in their own head, living with a family and caregivers who are isolated even from their own relatives, stuff them together in a separate segregated class, isolate them in separate buildings you are committing educational malpractice. Any justification for such policy seems to run counter to a child’s need and their families need for inclusion.
I am here tonight holding the school calendar of the district in which my granddaughter’s class is embedded. It contains scores of beautiful faces and it seems to offer well over 100 activities during the school year. As a very active grandparent I feel 100% excluded from that community. I consider that a travesty.
Do you think that such policy changes go unnoticed? Of course not. Is there an outcry? Of course not. We are so few. For many of these children and their families outcries drain energy. Energy is in short supply in families with special needs children. So, I am here again to generate outcry, and I will return again and again if necessary. And I will publish again and again till this model of exclusion dies and a new one of comprehensive inclusion is born.
Yes I am agitated, but I am also here with my hand out to join with you in finding inclusion for these children. I am currently spearheading a project for the The International Foundation for CDKL5 Research Centers for Excellence at Boston Children’s Hospital and Colorado Children’s Hospital. The purpose is to link them up with the National Center of Adaptive Neurotechnologies right here in Albany, as they are an arm of the Wadsworth Center. My partner and granddaughter Haley would like like to see her home district become part of our efforts.