Special Education in Metro Toronto Public Schools
As mandated by changes to the Ontario Education Act, the Special Education Advisory Committee (SEAC) of a board of education is legislated to make recommendations to the board in respect of any matter affecting the establishment, development and delivery of special education programmes and services for exceptional pupils of the board. It may also raise and advise about issues related to annual review and budget.
The following is excerpted from a letter to the Director of the Toronto District Board of Education.
It is with great sadness that I have learnt from members of the Special Education Advisory Committee (SEAC) of the decision to possibly exclude the seat for epilepsy. I would like to illuminate my plea by quoting you recent statistics. By the time our current population turns sixty years old, one out of these three will have experienced their first seizure. It affects all of mankind. Epilepsy is distributed uniformly in all and every social strata, universally. It presents usually in childhood thus impacts expansively on education.
On Monday March 2, 1998, SEAC will resume its work at 7:30 p.m. at the Toronto Board. Our collective voices might then be stilled. Yet in December of 1997, only eight weeks ago, we had the status, the rights and the dignity of holding a very important and prestigious seat. How hard that seat was won, how quickly it could be taken away.
People with seizure conditions have been historically discriminated. Because of the unpredictability of the event that heralds epilepsy and because of the momentary, random movements during this event, seizure disorders (epilepsy) are the most feared and complex disorders, There are at least thirty different types under one label. It isolates those who suffer from it. It subjects children to shame and to ridicule. We as parents do not fear the condition itself. We must adapt, and we must understand. We are compelled to help. However, we live with the terror of the rejection of our young, of attitudes outmoded and of exclusion.
The children of epilepsy have been banefully neglected by our society, yet this is the "Decade of the Brain." I have never known a child who does not wish desperately not to have epilepsy. I have never known a child with epilepsy who does not need specialized educational supports. The Special Education Department of the Toronto Board has been a shelter, our haven of help. As noted, children with seizure disorders have been the recipients of extensive discrimination.
I speak through the eyes of children when I state this to be a case of identity. We cannot allow ourselves to be hurled backwards in time. This is a human condition, a matter of rights. Without SEAC, we again will be thrust into darkness. I speak to you from many years on the "front line." I am a proud member of the Epilepsy Research Fund of Canada. We are a small registered charity and have raised more funds than any other private organization in Canada. I have been involved with children, students and their families for fourteen years - supporting, passing along that which has been taught to me and, most of all, demystifying this condition.
It is a compelling predicament, a compelling struggle with a society that has barriers which weaken all but the strongest. We do care deeply. Because of our straggles of the past, we cannot be silenced. We need your help.
I urge you to reconsider and to reinstate our position. Thank you so much in advance. I await your response.
Yours truly,
Mrs. Sabina Erlich
Mother and advocate for one of our children who has a seizure disorder
Epilepsy representation has been excluded from the Special Education Advisory Committee of the newly-amalgamated Toronto District Board of Education. Although 18 agencies applied, only 12 agencies can be represented. Epilepsy was the only "exceptionality" to be excluded. The board accepted a recommendation that epilepsy, as a medical condition controlled by medications, does not meet "exceptionality" criteria, and that children affected by seizure disorders do not warrant special treatment and do not qualify for IPRC (Identification, Placement and Review Committee) as a result of their disability.
This would seem to imply that very few children have seizure disorders, that all children with epilepsy have complete seizure control by means of medication, and that neither seizures nor medications have significant physical, emotional, social, or cognitive effects on these children. Apparently, this matter is still under consideration by the Toronto District Board of Education.
Thanks are extended to Dr. Ben Lowinsky for his ongoing, passionate and sympathetic representation of children with epilepsy.
