SOLUTIONS FOR CHANGE

Responding to the needs of Ontarians with Episodic Disabilities

In early 2009, The Canadian Working Group on HIV and Rehabilitation was awarded a two year grant by the Ontario Trillium Foundation to create a provincial episodic disability Information and Referral Centre, and an Ontario Episodic Disabilities Network (EDN) to identify and respond to provincial issues and needs from a cross-disability perspective.

These initiatives will build on CWGHR’s work on episodic disabilities at the national level including the important work of the National Episodic Disabilities Network (EDN). The National Episodic Disabilities Network (EDN) has been coordinated by CWGHR since 2003, in order to establish an ongoing platform for the exchange of ideas and collaboration on issues specific to episodic disabilities. Through the EDN, collaboration has occurred on policy analysis, position statements and the promotion of more flexibility in disability income support programs to meet the needs of people living with episodic disabilities.

Today, people with HIV who have access to treatment are living longer than ever before.  As HIV is increasingly experienced as a lifelong episodic disability, it has much in common with other episodic disabilities such as multiple sclerosis, lupus, Hepatitis C, some forms of mental illness, cancers and arthritis. Features that distinguish episodic disabilities from ‘traditional’ disabilities are their unpredictability, and alternating episodes and degrees of illness and wellness, both of which can have a negative impact on employment participation, income security, scheduling and coordination of care, and social inclusion. Episodic disabilities are becoming more prevalent in Canada1 and research reveals the need for knowledge generation as well as an increased capacity for services and organizations to be more responsive to this issue.2

The overall goal of the project is to increase the engagement and capacity of Ontario to respond to the needs of people living with episodic disabilities.  Building with and from our current partnerships with national episodic disability groups (including people with episodic disabilities, employers, insurance companies, rehabilitation professionals, etc) we will;

• Research and develop a provincial Information and Referral Centre on episodic disabilities, with a publicly searchable online database, information (about programs, policy and research) and referral service.
• Research and develop an Ontario EDN to identify and respond to provincial needs from a cross-disability perspective.
• Work with Ontario communities to coordinate and promote educational opportunities related to episodic disabilities, including employment, income security, coordination of care and social inclusion.

The Information and Referral Centre, and the Ontario EDN are integrated and will inform and strengthen each other as they provide much needed information to potential and current employees with disabilities, their formal and informal caregivers, potential and current employers, insurance plan designers, human resources professionals, public policy makers, rehabilitation and vocational rehabilitation professionals and others about policies, supports and opportunities. 

The development of the Ontario EDN and the Information and Referral Centre will increase knowledge about provincial trends and priorities related to episodic disabilities, as well as improve access to information on programs and services about episodic disabilities. This will lead to greater engagement of communities across sectors and jurisdictions to provide information about episodic disabilities and strengthen communication at the provincial level between HIV and other disability groups.

For more information please contact, Martine Mangion at mmangion@hivandrehab.ca or at Tel: 416-513-0440 ext 244

1 Government of Canada response to “Listening to Canadians: A First View of the Future o the Canada Pension Plan Disability Program”. The Fifth Report of the Standing Committee on Human Resources Development and the Status of Persons with Disabilities. November 2003, p 22.

2 Wong, Lily.  Analysis of Responses to a Survey of Human Resources Professionals on Episodic Disabilities, Canadian Working Group on HIV and Rehabilitation, March 2006.