More about SEAC in Toronto
Benjamin D Lowinsky, BA, BEd, MA, PhD, former representative of the Epilepsy Association Metro Toronto (EAMT) on the Special Education Advisory Committee (SEAC) of the previous Toronto Board of Education.
Dr. Lowinsky's unedited submission is available from EO.
In the restructuring, amalgamation and cutting-back in recent months, parents should remember that special education is neither a privilege nor a luxury but a right, protected by and enshrined in provincial legislation and that they, as parents, are indispensable participants in decisions relating to the placement and program of their children in special education. Parents should bear in mind how important it is for them not merely to reinforce and complement their children's learning in school and to advocate on their behalf, but also to register their concerns, opinions, and where applicable, constructive criticism of unfair or dysfunctional decisions and/or policies.
I last sat on the former Toronto Board of Education SEAC in December 1997. For almost 6 years, I attended all meetings, advocated fervently on behalf of children with special needs related to epilepsy, provided information and advice to the board, counselled parents and children on special education placements, and gave public deputations against ongoing cuts in education and health care.
The newly amalgamated Toronto District Board of Education (TDBE) under the direction of the provincial government has a mandate very different from that of the previous board. Under the new board, we fulfilled all the set requirements relating to experience, expertise, and representation by the organization itself. We attended and actively participated in all the interim SEAC Congress meetings, and did everything possible to insure and maximize our prospects of representation. More than two months elapsed before SEAC was functional. Long after other associations (some of which had never before sat on SEAC) were informed of their membership, EAMT was notified of its exclusion. Persistent efforts were made publicly and privately, and are still being made, to reverse this decision.
Even before official notification, the board was questioned about this decision and the process that produced it. Why was epilepsy excluded when it had set an important precedent on the last SEAC, representing the complex special education needs and interests of a large number of children? First, we were told that EAMT did not meet the stipulated requirements of an organization that warranted representation on a SEAC. When evidence to the contrary was presented, their rationale changed. Then, we were informed that the decision was based on the 'fact' that epilepsy was primarily, if not solely, a medical condition: students with epilepsy could solve all their problems related to this disorder simply by taking medication. When this position was effectively exposed and challenged for what it is, the official reason became that provincial law stipulated only 12 seats on a SEAC: there were 18 applicants. In effect, we were told, epilepsy lost out due to sheer numbers. It's curious, however, that of the excluded organizations, EAMT was: the only disability representative; had been on the previous SEAC; and had conscientiously attended all interim meetings at which ground rules, understandings and assurances led everyone to believe that epilepsy would be represented.
Letters critical of this decision have been written to SEAC, the Director of TDBE and the Minister of Education. A letter has been sent to the provincial government by SEAC asking for a change in legislation so that SEAC can accommodate more organizations. But even if this is done, there is no guarantee of representation. To date, there has been no satisfactory explanation for this exclusionary act, setting back the clock of special education, human rights and the cause of epilepsy.
In this context, I encourage you, as parents, to express yourselves in writing to the new board regarding the fact that epilepsy (EAMT) is no longer represented in one of the largest school boards in North America, and to continue those important activities related to your children's education. As the father of a high school student with complex partial seizures, a long-term member of a SEAC and previously active on other board committees, an advocate for students with epilepsy, and an educator, I am passionately committed to the preservation and expansion of Special Education. By making sure that your child has been appropriately identified and placed in a program shaped for his or her needs, by intervening proactively in your child's education and, where necessary, advocating on his or her behalf, you, as a parent, can contribute to the resolution of problems and the delivery of a cognitively and emotionally satisfying special education program. It is important both to maintain regular contact with the teachers and principal, and to actively participate in the decision-making processes related to your child's education. This means: attending all meetings related to the progress and learning of your child, especially the Identification, Placement, and Review Committee (IPRC); making all staff aware of the particular symptoms, needs and special interests of your child; and making sure that your child receives proper accommodation and curriculum modifications. It may mean insisting upon necessary changes based on your child's needs and legal rights, and not agreeing with the status quo, especially if based on cutting costs rather than on the principles and requirements of special education.
In pursuit of the most appropriate program for your child or in response to problems associated with a particular neurological disorder, it is often necessary to involve the skills and expertise of professionals, both within and outside the school board. Within the board, special education coordinators, consultants, superintendents and teachers can play key roles in resolving difficulties and refining programs. Building bridges and making necessary connections with relevant board and staff members are indispensable. When these resources do not suffice, turn to your own sphere of friends and professionals, including your advocate, social worker, psychologist and whatever other professionals you know and trust who can exercise influence from the outside. It is often helpful to consult and involve your SEAC representative whose knowledge, experience and determination can be put to good use. Elicit advice and suggestions from your local epilepsy association, which is committed to the promotion of your best interests.
Now, as boards of education are eliminated, downsized and restructured, as educators are asked to do more with less, and as the new TDBE tragically reinforces an already established legacy of exclusion, discrimination, and stigmatization, the role of SEAC and TDBE can only be less credible, less proactive and less effective when it stills the official voice of epilepsy: in doing so, it detracts from the cause of special education. As I appeal to TDBE to reverse its decision - to do what is only fair and in keeping with its commitments - I also encourage you to continue to articulate and act on those goals related to special education, while exerting constructive pressure on the educational system, with the needs and rights of our children at heart and with the principles of special education in mind.
