Wired for Success

Toward an Ontario Brain Strategy

By Kent Bassett-Spiers, Chair, Ontario Neurological Joint Working Group, and Shannon MacDonald, Director, Policy and Partnerships, NHCC

It is estimated that over three million Ontarians are currently living with a neurological, psychiatric or developmental brain condition. These conditions are often progressive and effect every age and stage of life. At the same time, they create a significant and often catastrophic impact on the individual with the condition, as well as on their families and caregivers. For all of society, the health, social and economic costs of brain conditions are enormous, yet there has been no cohesive and integrated strategy for addressing these impacts across Ontario to date.

In 2009, Neurological Health Charities Canada (NHCC), a group representing neurological charities, and a division of the Ontario Ministry of Health and Long-Term Care (MOHLTC) came together in a spirit of mutual cooperation to identify ways to address these issues and create the first steps in an Ontario Brain Strategy.

Although there have been many examples of government working together with charities and organizations to address issues, the opportunity for NHCC and the MOHLTC to work together from the start has been viewed by some to be a relatively unique partnership. It is clear that the working arrangement is proving to be a very successful pairing of expertise and skill. It has resulted in some strong and forward-thinking outcomes.

Although the diversity of brain conditions is clear, what may not be as obvious are the commonalities that bind them together. At the root is their relationship to the brain—the most complex and, to many, most important organ of the body.

Each distinct condition also has in common a dependency on a large and complex health and social system of generalized knowledge and services. While the bodies of knowledge and expertise vary for each condition, system design pre-requisites are often either similar or identical for most conditions. A third commonality among neurological conditions are the social consequences of experiencing a profound change in how one is engaged in society and can participate as a valued citizen. People with brain conditions are challenged on a daily basis to find ways to ensure that these basic opportunities are realized.

To address these commonalities and the needs of our collective communities, the Ministry and NHCC developed a joint-planning process that involved broad consultation with experts and stakeholders, literature reviews, background data collection and a formal long-range scenario planning process that identified key themes.

Wired for Success: Toward an Ontario Brain Strategy is an important first step in developing an integrated approach to addressing these important issues. Five dominant themes emerged from this consultative work. People expressed a need for having:

Personal choice
• direct control of decisions regarding medical care, social supports and shaping their living environment

An inclusive culture
• an Ontario that has a focus on health over illness
• reduced stigma achieved by shifting public values and attitudes
• employment opportunities and flexible work arrangements

Enabling technology
• assisted living technologies to enable better living
• smart homes, accessible education and workplaces
• flexible transportation systems

Supported caregivers
• whose role is valued
• who are supported sufficiently to maintain their own health and financial stability

Shared knowledge
• commitment to research and to moving evidence into practice
• reliable medical and decision support information
• an engaged online community

Secondary themes also emerged, including integrating systems, designing the built environment, engaging the private sector, and taxing and funding.

Living well with a brain condition in Ontario is much more than a “health” issue. It requires the active engagement of the private sector, non-profit sector and key government ministries, including: Finance, Health Promotion, Education, Community and Social Service, Child and Youth Services, Municipal Affairs and Housing, Labour, Research and Innovation, and Transportation. In short, it requires a thoughtful response from government, industry and the nonprofit sector that addresses all aspects of an individual’s life: family relationships, education, income, employment, housing and social participation.

NHCC and the Ministry will continue this work to examine these dominant themes, conduct a broad consultation across key stakeholders to generate support and feedback and, through a prioritization process, identify areas of opportunity that will allow breakthrough solutions to be developed, implemented and sustained.

The evaluation of our success will not rest with the completion of this report but, more importantly, with the work we can accomplish for Ontarians living with a brain condition. It is for them, along with their families, that this work is necessary. It is for them that our collective efforts now, and into the future, are so important.