This strategic plan has been approved by Epilepsy Ontario’s Executive Committee as of May 2011. Here you can learn more about our goals and how we plan to achieve them.
3. Guiding Principles
4. SWOT Analysis
5. Strategic Focus Area
6. Supporting Directions
This strategic plan has been developed by the Executive Committee of the Board and Executive Director of Epilepsy Ontario to provide a disciplined and forward thinking approach to the management of Epilepsy Ontario (EO) over the next 3-5 years. Since the last strategic plan was completed in 1992, there have been significant changes in the charitable sector, in the nature of funding and, in how persons with epilepsy and their families are supported. Further, EO has an ineffective operating model with the local agencies which needs to be redefined and executed.
The Executive Committee of the Board and Executive Director of Epilepsy Ontario have undertaken to develop a strategic plan which aligns the organization to areas of focus where it can be a clear leader in the sector and which differentiates it from activities of other stakeholders.
In preparing this strategic plan, EO engaged agencies, both affiliated and unaffiliated, in a survey. A summary of the survey is included as Appendix A.
EO was established in 1956 as a provincial non-profit organization by a group of parents and interested parties from the Toronto area. It was defined to consist of chapters and regions that would work with, and on behalf of, each person with epilepsy.
Today EO operates with an Executive Director and two full time staff as well as volunteers and students to support programs.
It works together with a network of affiliated and unaffiliated agencies, and individuals, to achieve the Purpose described in Section 3.2 below and to collaboratively deliver the Mission described in 3.1 below.
It is governed by a Board of Directors comprised of representatives of the affiliated agencies and “members at large” with specific expertise in epilepsy or in the governance of charities. The Executive Committee of the Board, currently comprised of nine members, including President, Secretary, and Treasurer, provides primary oversight on the affairs of the charity,
At this time, EO’s funding is entirely from the general public, including contributions from corporations, foundations, patrons, individuals and generated from special events. Students are sometimes funded through government support. Some local agencies receive United Way Community Funding for direct client services. At times in the past EO has been a recipient of Trillium Foundation funding and EO solicits grants from time to time.
3.0 Guiding Principles
Epilepsy Ontario is a registered charitable non-profit non-governmental health organization dedicated to promoting independence and optimal quality of life for those living with seizure disorders, by promoting information, awareness, support services, advocacy, education and research.
Through a network of local agencies, contacts and associates, Epilepsy Ontario provides client services, counselling and referral services. Epilepsy Ontario is the voice of epilepsy in the province.
The purposes of the organization are as follows:
- To further educational, recreational, social and employment opportunities for persons with epilepsy;
- To assemble, evaluate, disseminate information on the subject of epilepsy to acquaint and inform educators, government authorities, medical practitioners, health and community service authorities, members of the legal system and the general public of the special needs of those with epilepsy;
- To establish and maintain, directly or in support research activities in the field of epilepsy;
- To provide an organization in which all those interested, including those persons with epilepsy, may belong;
- To assess and promote leading practices in the delivery of health care to persons with epilepsy;
- To establish, support and maintain information and referral centres where skilled advice is available to persons to epilepsy and their families;
- To aid in coordinating and correlating the effects on individuals and of organized bodies interested in the well being of persons with epilepsy;
- To develop and combine the strengths and assets of all regions of the organization into a unified and coordinated volunteer organization capable of acting jointly as advocate, ombudsman, and spokesperson for persons with epilepsy; and
- To solicit and receive funds for the accomplishment of the above purposes.
With a view to expanding its reach and effectiveness, EO is a collaborative organization that seeks to partner with associations, governments, NGO’s, corporations and individuals that support its mission and purpose.
EO and agencies each bring unique strengths to the table and can benefit by working together, presenting a unified front with a stronger, consistent message. Accordingly, EO will seek positive, collaborative relationships with the agencies.
Within its financial means, when aligned with its strategic direction, and when meeting pre-established criteria, EO provides its services without cost.
EO will focus on the four strategic pillars defined below and develop standards of performance in these areas with its key stakeholders.
EO will adopt a governance structure and associated By Laws that support delivery of the strategic plan.
4.0 SWOT Analysis
- Financial solvency
- Direct access to specialists in epilepsy research and care management
- Very comprehensive information bank
- Provincial scope/reach either through agencies or directly
- Membership in Epilepsy Canada and Canadian Epilepsy Alliance
- Experienced competent staff
- Programs currently being delivered are excellent
- Education materials for the agencies, general public and care givers e.g. doctor’s offices
- Innovation in fundraising, program design and support
- Advocacy (little activity)
- Support to employment programs which embrace inclusiveness/diversity
- No direct support to research
- Uneven relationship with the agencies
- Spread too thin; lack of depth in any one area
- Trying to be all things to all comers
- Lack of organizational capacity to take on new initiatives
- Restrictions around fundraising
- Lack of specialist resources on staff that could make us more effective e.g. social worker
- Getting our knowledge out to the front line agencies
- Lack of diverse and stable funding
- Provincial reach and influence means that EO could develop strong provincial programs and be THE VOICE of EPILEPSY through effective advocacy and outcomes
- As the only Ontario provincial agency and the largest one in the Canadian Epilepsy Alliance (CEA), championing provincial issues and initiatives (and funding to support them) would provide leadership to other Ontario agencies
- EO’s website could be the ‘go to ‘ site for the most relevant, up to date, information and resources on epilepsy research, management and issues
- Focus on a few key areas would allow EO to leverage our scarce resources better and be a clearer voice in soliciting funding
- EO’s mixed relationship with the agencies prevents EO from achieving its full potential as a provincial leader
- The nature of the current relationship within CEA is not supportive of a provincial body, in particular in the area of fundraising. It leaves EO without the means to expand our programs. EO needs to pursue this further with CEA
- Without a voice in government EO cannot be truly effective for its clients and stakeholders; individual leaders are taking EO’s place at that table.The sector’s fragmented approach to fundraising confuses the funder and donor and reduces the effectiveness of EO’s fundraising.
5.0 Strategic Focus Areas
In determining in which areas EO should focus, the criteria were:
- EO is or can be the leader in the focus area
- It is differentiated from what the local agencies do but it could also be additive to agency work i.e. take it to the next level
- The focus area could attract funding in its own right, independent of agencies
- It would measurably advance the cause of epilepsy.
The following four focus areas and the two supporting directions form the framework of the new strategy. All programs, directions, initiatives, resources and activities will be aligned to the focus areas.
The focus areas are:
- Knowledge base
- Provincial programs
The supporting directions are:
- Financial strength
- Organizational capacity
- Risk Management
Because of the expertise and experience within EO and its associations with medical and other stakeholders, the organization is particularly well suited to act as a knowledge broker on epilepsy. EO is recognized as an important and competent source of information and resources and could leverage that position to become the leader, not just in Ontario but nationally and internationally.
- Become the “go to”, “go through” and “push through” resource for the most, current, relevant, factual information and available resources on the condition and its co-morbidities, its management, including toxicology, nutrition, surgery and other medical intervention, and support that those with epilepsy and their families can expect.
- Provide the information in manner that is accessible, gets to users in all forms (print, CD’s, WEB, via social media, webinars, seminars, etc.), easy to understand and navigate and is enriched by the user through their personal experience. e.g. model of www.CaringVoices.ca.
- Collaborate with the agencies and other stakeholders to have ONE website to which all others are linked bi-directionally.
- Support professional development for staff and volunteers of affiliate chapters.
- Develop a two year communications strategy taking into account the needs of clients and other stakeholders, technology, best practice, budget, and human resource requirements.
- Engage Ontario agencies in a provincial branding strategy
EO is well situated to support research in Epilepsy that deals with the management of epilepsy ranging from knowledge, attitude and practices (KAP’s), to diet, toxicology and surgery. The continuum of care management is a particular area that is under-resourced and where EO could provide leadership.
- Support medical research through continuity of EO’s relationship with Epilepsy Canada and promotion of specific research in the management of epilepsy. Our involvement in research needs to be transparent to all stakeholders.
- Research should also include impact analysis on which programs are most successful or most needed. The research information would be used to support advocacy, fundraising and planning.
- Define a protocol for EO’s involvement in research, including the kind of research; the type of support; which organizations may be funded; and, the manner in which funds may be directed to research (e.g. RFP, direct donation).
Whether through agencies, individuals or directly, EO is well positioned to provide provincial wide programs and take a leadership role in this area. Current program offerings include Summerfest Camp, the OBCL Scholarship Program, and resourcing funds through Gaming, for EO and shared with agencies.
- Foster collaboration across the sector and on behalf of the sector through education and partnership building with key stakeholders such as:
- First aid providers to improve their knowledge of seizures
- Community living centres
- Employment Centres and Job related training
- HRSDC Canada for overall program funding
- Educators and volunteer programs
- Provincial funders.
- Expand our existing provincial programs. EO has invested ongoing resources in administering these programs and that work could be leveraged to grow the programs.
- Define and develop a distinctive, signature fundraising activity that would become associated with Epilepsy and in which all agencies and individuals could become engaged.
- Act as a resource for education, training and support of regional office staff. Area of training could include governance, operations, and fund development.
- Provide leadership in the expansion of epilepsy services to underserviced geographic areas.
- Define and develop a coordinated provincial effort for fundraising, as part of an overall fund development strategy (see Section 6.0 below) including key stakeholders mentioned above, with a view to raising funds for the mainstream programs to be operated by EO and support regional / local programs on a specific basis, as a share of receipts and/or on a grant basis.
- Develop a step by step manual that show local agencies how to participate in provincial programs and joint fundraising activities.
- Expand our current programs (OBCL Scholarship and Summerfest Camp) by working directly with the schools and social media in addition to the agencies to reach potential participants directly. Engage the agencies in participating more fully by letting them benefit from the public relations opportunities. Seek sponsorship for the programs to expand their reach.
- Fund and supply an education coordinator who could travel and be used for education events.
- Define the protocols for establishing a new chapter or supporting an existing chapter.
- In collaboration with agencies, develop a set of standards to improve the effectiveness of the programs in positively impacting the lives of people with epilepsy.
An untapped opportunity for EO is to influence our law makers and governments to effect change for those living with epilepsy through directed knowledge, conveying understanding of the issues, and proposed approaches for action and funding.
The sector is currently very fragmented in its approach to policy makers. While an enlightened local MPP who was solicited by a local agency can champion the cause in government, a more comprehensive approach, where EO is at the table “speaking for” and with other stakeholders is likely to be much more effective. Further, other than on the periphery, EO has not involved itself in national epilepsy awareness activities at the provincial level.
Key areas of focus for immediate advocacy are:
- Legal – epilepsy as a disability
- Medical – providing an effective care protocol and the management of a continuum of care
- Employment – discriminatory employment practices and barriers to employment.
- Develop key messages in collaboration with epilepsy agencies
- Develop two-pronged campaigns where local agencies are delivering consistent messages to their local MPP’s while EO is doing the same provincially.
- Develop the credibility to become the “voice of epilepsy” in the province.
- Adopt the role of “provincial champion” for March Awareness Month and Purple Day.
- Focus in areas where we already have the most credibility, for instance the Ministry of Health, Ministry of Attorney General to build our issues campaign.
- Develop a two year provincial advocacy strategy detailing which specific issues we need to champion in the health and justice areas (e.g. patients rights, employment, funding for and/or access to epilepsy management treatments), assessing policy makers as to the right person to take the cause forward in government, and which other leaders need to be engaged.
- Work with other organizations and key individuals to take the lead as the provincial champion for key awareness activities such as March Awareness and Queen’s Park Day.
- Develop relationships with third party stakeholders e.g. pharmaceutical companies, to sponsor awareness activities.
6.0 Supporting Directions
In order to execute the strategy, EO needs to define the financial resources required. Concurrently with the strategic focus areas, financial strategies must be put into place that ensure, not just solvency, but long term financial strength. The first initiative is the development of a multi-year business plan incorporating budget, fund development and milestones toward achievement of the plan.
Having the right and sufficient organizational capacity to deliver the programs in this strategy, are critical to success. This will require a collaborative and innovative approach to program delivery where resources may be used more flexibly across organizations. A plan on organizational capacity is a necessary process to complete the strategy.
A supportive governance structure which not only permits but propels EO to move forward with its strategic plan is critical as our current structure (and By Laws) are constrictive.
When undertaking a new strategic plan, it is particularly important to take a forward view of potential risks. The risks are financial, physical, people, and reputation. A risk management plan should be included as part of the Business Plan.
Appendix A – Survey Summary
- 13 agencies (of 19) responded of which nine were Affiliates answered six Questions:
- How does EO currently support you?
- How would you rate the overall service you receive?
- What changes would you like to see in the way EO supports your organization?
- What could EO do to improve its support to you that would improve your ability to provide services to your clients?
- What activities/services do you feel EO should stop providing and why?
- Other comments you would like to make.
- Compiled independently and confidentially – only summary results presented
- Used as an important element in developing our strategic plan
Survey Results Themes:
- “EO needs to clarify its role to the agency community.”
- Why is EO here?
- What does EO do?
- What is the vision, strategy of EO?
- ¨EO needs to define its role in direct service delivery.”
- ¨There is a perceived lack of transparency in Epilepsy Ontario’s dealings with the agencies.”
- Funding processes perceived to differentiate between agencies and not to be equally accessible across agencies
- Contract work
- Transparent AGM’s
- ¨ You expect”
- Information, governance, training support to agencies vs direct clients
- Provincial mindset, scope and strategy
- Celebrate collective successes
- Leading provincial body to support regions
- Collaboration & Communication
- Foster collaboration to achieve efficiencies province wide
- Lead research and build relationship with key stakeholders e.g. community living centres, St. John Ambulance, Funders and program builders
- Unify programs/ services across the province
- Coordinate fund raising for similar programs across the province and that unify the voice of epilepsy across the province
- Joint fundraisers
- Access to “big” corporations
- Agency Support
- Increase participation at the agency level – like we’re doing tonight
- Education/events, fundraising materials for agencies to work together
- Shared access to databases e.g Big Online
- Bilingual information
- Common website with the most up to date info; common branding
- Training sessions in leadership, human resources, administration, organizational structure
- Provincial advocacy initiatives on the government scene
- Heightening awareness
- Strong voice for epilepsy
- What agencies expect differs depending on where they are in their personal evolution.