Episodic disabilities
COLLABORATING FOR CAPACITY
Towards an Integrated Approach to Episodic Disabilities
The concept of “episodic disabilities” is an innovative approach to understanding many lifelong disabling conditions prevalent in today’s society. Many people experience challenges in care, treatment, support, social and economic inclusion, employment and other aspects of participation in society, due to the episodic nature of their disability.
Many diseases have a national strategy (e.g. HIV/AIDS, cancer, arthritis, mental health, etc.) that require coordination among many jurisdictions, disciplines and stakeholders. Rather than working in silos, the Canadian Working Group on HIV and Rehabilitation (CWGHR) developed the Episodic Disabilities Network (EDN) in 2003 to facilitate a cross-disability approach to address these issues.
Collaborating for Capacity is a project funded by Human Resources and Social Development Canada (HRSDC) and sponsored by CWGHR.
The goal of the project is to promote optimal care, support and inclusion of people with episodic disabilities. Building on established, innovative collaboration among disability groups, this initiative will increase capacity to share information and best practices.
In addition, it will lead to a framework for the development of a national, integrated strategy on episodic disabilities to guide coordinated care and support for people living with episodic disabilities.
Intended Results
Through the EDN collaborative process, the project will increase:
• Awareness of partner organizations’ strategies and activities
• Utilization of tools for information exchange
• Capacity to share, apply, and adapt knowledge and ‘best practices’
• Awareness of gaps in current strategies and highlight components of effective strategies
• Capacity to develop and promote an integrated strategy on episodic disabilities.
• Capacity for collaborative research, education, policy analysis, care and support.
Canadians will benefit from:
• Improved capacity of care providers as a result of coordination and integration of policies, programs and research on episodic disabilities
• Improved opportunities for people with episodic disabilities to access effective care, treatment and support as well as social and economic inclusion
• Reduced duplication, gaps and inconsistencies in accessing care
• Greater inclusion in society.
In addition, the innovative approach of the EDN to improve integration of policy, practice, research and education will be strengthened by resources developed through this project, including a framework for an integrated strategy on episodic disabilities.
Why is this important now?
• Due to advances in treatment and technology, people with episodic disabilities live longer and have greater social and economic inclusion
• An increasing incidence of disabilities with an episodic component
• Growing anecdotal evidence but little formal research on prevalence, impact and Canada’s response to episodic disabilities
• Trends towards community (vs. institutional) care for people with episodic disabilities
• Significant treatment breakthroughs for key disabilities, e.g. multiple sclerosis, HIV/AIDS and arthritis.
• Increased complexity of care needs for people with episodic disabilities (i.e. many people live with two or more co-existing disabilities that require care coordination).
• Increasing knowledge requirements of staff and volunteers within disability organizations.
• Current policies and programs often do not address the needs of people living with episodic disabilities (e.g. need for extended health care benefits and income support when working part-time; episodic and unpredictable need for coordination of care).
• Greater demands on community resources, requiring innovative, comprehensive responses (e.g. EDN) to bridge current silos of vision, knowledge and operation.
A Comprehensive and Cost Effective Approach
These developments demonstrate a need for both comprehensive and cost-effective approaches towards episodic disabilities strategies, including development of:
• New tools to assist with the collection and exchange of information
• Research methodologies
• Increased organizational capacity to provide integrated services
• New networks (i.e. regional EDNs)
• New approaches (cross-disability) to integrated strategies
• Opportunities for increased social inclusion
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