History

Epilepsy Ontario was established in 1956 as a provincial non-profit organization by a group of parents and interested parties from the Toronto area. Growth was slow and uneven in the early years – in fact for the first ten years the public’s interest and support was minimal as well as the dollars available to support this fledgling group. Certainly during the fifties and sixties development centered in the Metropolitan Toronto area.

In 1967 the Ministry of Health lent a civil servant to act as an Executive Director. This arrangement lasted for eight years before the government cancelled health project support. During those eight years the Provincial organization consisted of a Provincial office, the Metropolitan Toronto chagency and a few outreach contacts.

In 1976, a task force of the Board of Directors reviewed this structure and in particular, the problems relating to the local contacts. The contacts had until this time functioned for a period of time and then faltered, usually due to a combination of problems – waning interest energies and government apathy. The task force divided the Province into 19 regions with a three level structure for the contacts, whereby they could move through a progression of steps to become autonomous regional chapters. To start things off the Board of Directors raised money to fund the Mid-West area (currently Epilepsy Support Centre in London, Ontario) which at that time was functioning as a totally voluntary organization. An Executive Director was hired and after a period of five years the organization was receiving United Way funds and officially designated as a chapter region.

In 1982, a three year Trillium Foundation grant was obtained – Epilepsy Ontario was able to hire a fund raiser and a community development fieldworker. Simcoe County and Huron/Perth/Bruce, received funds to establish an office and hire a co-ordinator. Metro Toronto received funds to hire an outreach worker for the growing ethnic population.

During the early eighties the epilepsy structure consisted of the provincial office, 2 regions – Toronto and London with membership on the provincial Board of Directors, 1 chapter (Simcoe County) and 5 contact areas – Waterloo, Chatham, Belleville, Sault Ste. Marie, and Mississauga. Growth for these fledgling groups under the direction of the Provincial fieldworker was erratic in a constant state of flux with volunteers and financial resources. Several attempts were made to assist these areas while providing basic services; counseling, literature, etc. for all other non-serviced areas.

A time for enlightenment regarding most health issues generated much interest in issues surrounding epilepsy. During the intervening years of no firm financial base, or Trillium funding in the late 1980’s a period of explosive growth for new contact areas was experienced. Growth and services in Belleville, Mississauga and Chatham were reduced to a telephone contact only, While Sudbury, Timmins, Ottawa, Kingston, Sarnia, Owen Sound, Peterborough, St Chatharines, Hamilton, Kitchener, Oshawa, York Region, experienced tremendous interest and growth. Contacts were established in Brantford, Dryden, Thunder Bay, Brant, and Windsor. Regions provided full-service, agencies were developing and providing basic support groups and service, while contacts distributed literature on epilepsy and provided telephone back-up whenever possible for people in the area.

In December of 1989, Epilepsy Ontario received approval from the Trillium Foundation for a new five-year grant. This grant, dependent on sunset reviews for the Trillium Foundation was approved for $1,587,500. Included in this amount was the grant of $514,600 for 1990, and an Agency Development Fund for $280,000 to assist contacts to gain agency status and to help identify contacts in un-serviced areas was also approved. Twenty agencies received funding with another eleven contacts eligible for funding from this Fund during the initial 5-year grant period.

The objective of the Provincial portion of the grant was to support three full time staff at the provincial office – Education and Programs, Fundraising and Secretarial. The Provincial office also received funding to purchase computer equipment, 4 Kid’s on the Block puppet sets for the Province, a brochure and funds to host educational seminars for the various chapters and contacts throughout the Province. Funding was also received for the video, “All About Epilepsy”.

Recognizing the need for expansion of services at the agency level, the Trillium Foundation grant included funding for the following agencies: Sudbury, Waterloo/Wellington, Kingston, Hamilton, Metro Toronto, Simcoe County, Huron/Perth/Bruce and London. Funding also included start-up expenses for Ottawa/Carlton, Timmins, Peterborough, York Region, Durham, Sarnia/Lambton and Sault Ste. Marie. Agency development funds were allocated to Dufferin, Cornwall, Niagara Peninsula, Mississauga and Brampton. Windsor, Thunder Bay, Muskoka and Brantford in 1993.

The objective of Epilepsy Ontario can be summarized into one statement: to provide support, education and information for agencies to serve those with epilepsy, their families, friends, associates, employers, and the communities at large. The importance of these functions at the provincial and agency level are not necessarily in that order. Education is seen by many to be the most important function while others believe that support through self-help groups and public information is more important. In any event the Provincial office provides counseling services, library facilities, medical and psycho-social resources, advocacy, educational material and public information pamphlets. It has long been recognized as a valuable service to have someone talk with a newly diagnosed patient or parent of a child that has been newly diagnosed.

Membership is encouraged for all agencies and contacts throughout the province and included membership at both the provincial and national levels. Membership is offered at the provincial level only when this is not available at the agency level. Epilepsy Ontario is governed by a Provincial Council of affiliates that meet annually with members appointed by agencies. An Executive Committee is elected by the Provincial Council to carry out the policies on a monthly meeting schedule. The Chief Executive Officer of Epilepsy Ontario is the senior staff person directly responsible to the Executive Committee. All other staff persons report directly to the Chief Executive Officer.

Some of the programs provided by epilepsy agencies include: