Report on the National Summit on the Episodic Disabilities Project
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Report On the National Summit on the Episodic Disabilities Project March 2 and 3, 2006 Lord Elgin Hotel, Ottawa, Canada Acknowledgements This Summit could not have been completed without the support and cooperation of partners of CWGHR. Too numerous to mention all of them here today, the following people and organizations have provided support towards the Summit: The Labour Force Participation and Social Inclusion for People Living with HIV and Other Episodic Disabilities Project is funded by the Government of Canada's Social Development Partnerships Program. "The opinions and interpretations in this publication are those of the author and do not necessarily reflect those of the Government of Canada." The Media Plan and its implementation have been skilfully developed and and managed by the student-staffed Public Relations Agency at Algonquin College. The Wellesley Health Centre has made available the expertise and skills of their CEO, Rick Blickstead, to apply his insight as a Facilitator for the Summit. The members of the Project Advisory Committee have supported this project since January 2005. Their support, and that of their affiliations, has provided, among other contributions, the foundation for the multi- sector perspective that is so valuable to this project. • Deanna Groetzinger, MS Society of Canada and Episodic Disability Network • Richard Weston, Canadian Council of HR Associations • Carole Barron, The Canadian Council on Rehabilitation and Work • Muriel Westmorland, McMaster University School of Rehabilitation Science and National Institute for Disability Management and Research (NIDMAR) and Canadian Forces Advisory Council • Cameron Crawford, President, Roeher Institute • Francisco Ibáñez-Carrasco, CWGHR Co-Chair and BCPWA Society • Peggy Proctor, Assistant Clinical Coordinator, School of Physical Therapy, University of Saskatchewan • Marcel Lariviere / Barbara Farber, Policy Analyst, CPP Disability Program • Penni Richmond / Dave Bennett, Director, Canadian Labour Congress • Irene Klatt, Vice President, Canadian Life and Health Insurance Association • Ken King, CWGHR Board and CWGHR Research Committee • Penelope Marrett, Executive Director, Canadian Mental Health Association The staff at CWGHR, Gillian Bone and Janet London, the Executive Director, Elisse Zack, as well as Melissa Popiel, MSW Intern and Eileen McKee, Project Manager have truly made this Summit a team effort. The Canadian Working Group on HIV and Rehabilitation (CWGHR) is a national charitable organization working to improve the quality of life of people living with HIV/AIDS through rehabilitation research, education, and cross-sector partnerships. CWGHR members include people living with HIV disease, members of community-based HIV organizations, national associations of health professionals, government agencies, private businesses and the employment sector. For more information, please contact us at 1240 Bay Street, Suite 600 Toronto, ON M5R 2A7 416-513-0440 [email protected] www.hivandrehab.ca ISBN 0-9734360-8-5 © May 2006 Charitable number is 85699 5535 RR001 TABLE OF CONTENTS EXECUTIVE SUMMARY ................................................................................................ 1 BACKGROUND.............................................................................................................. 1 RESPONDING TO THE NEED ....................................................................................... 2 SUMMIT DEVELOPMENT PROCESS ........................................................................... 3 THE NATIONAL SUMMIT ON THE EPISODIC DISABILITIES PROJECT.................... 4 PRESENTATIONS ............................................................................................... 5 RESEARCH FINDINGS ....................................................................................... 7 International Policy Analysis....................................................................... 7 Costing Analysis .......................................................................................... 7 National Survey Of Certified Human Resources Professionals (CHRP)........................................................................................................... 8 SECTOR-SPECIFIC BREAK-OUT GROUPS...................................................... 9 Workplace Impact......................................................................................... 9 Labour Impact............................................................................................. 10 Public And Workplace Policy.................................................................... 10 Insurance .................................................................................................... 10 Research ..................................................................................................... 10 Rehabilitation.............................................................................................. 10 Education.................................................................................................... 11 PRIORITIES OF RECOMMENDATIONS AND PILOT PROJECTS .................. 12 Policy Research.......................................................................................... 12 Educational Strategy.................................................................................. 13 Continuous Health Benefits ...................................................................... 14 Partial Disability Benefits Through Private And Public Insurers ........... 15 Implementing Disability Support Centres ................................................ 15 Pilot Sites.................................................................................................... 16 A NATIONAL PILOT SITE STEERING COMMITTEE ....................................... 18 EVALUATION .................................................................................................... 19 SUMMARY......................................................................................................... 19 APPENDICES............................................................................................................... 20 APPENDIX A – AGENDA ................................................................................. 20 APPENDIX B – MEDIA ADVISORY ................................................................. 22 APPENDIX C – KEY MESSAGES .................................................................... 23 APPENDIX D – ‘RECOMMENDATIONS COMBINED’ DOCUMENT ............... 26 APPENDIX E – PROPOSED TERMS OF REFERENCE FOR THE NATIONAL PILOT SITE STEERING COMMITTEE ................ 41 1 EXECUTIVE SUMMARY In order to address the challenges faced by people with episodic disabilities, the Canadian Working Group on HIV and rehabilitation (CWGHR) has undertaken a national multi-phase project, in ongoing consultation with the Episodic Disabilities Network1. This ‘Episodic Disabilities’ Project is funded by Human Resources and Social Development Canada (formerly Social Development Canada - SDC) until March 2007 and is sponsored by CWGHR. The project has researched policies internationally, from which it recommended models to accommodate people living with episodic disabilities through income support programs and in the work force, and has implemented a cost-benefit analysis. A pilot project will be designed and implemented to test and evaluate the models in a Canadian context. The result will be evidence – based recommendations for policy improvements that will contribute to labour force participation and social inclusion of people living with episodic disabilities. As a forum for exchange of information and ideas, a National Summit on the Episodic Disabilities Project was held in Ottawa on March 2 and 3, 2006, where research findings were discussed and the stakeholders initiated the development of a strategy for the piloting phase of the project. Ottawa was selected because of the increased access and opportunity for participation of federal policy-makers. The process and outcomes of this National Summit are the focus of this Report. BACKGROUND Today, people living with HIV who have access to treatment are living longer than ever before. In Canada, it is estimated that 56,000 people were living with HIV at the end of 2002.2 In addition, research undertaken by the Canadian Working Group on HIV and Rehabilitation (CWGHR) has shown there are many disabilities that are similar to HIV in that they are lifelong and episodic in nature3. Although there are no official statistics on the number of people with episodic conditions in Canada, Social Development Canada (SDC)4 stated in its November 2003 report that “recurrent and episodic disabilities are becoming more prevalent in Canadian 5 society.” 1 The Episodic Disabilities Network includes participation of the Canadian Mental Health Association, Lupus Canada, Multiple Sclerosis Society of Canada, and other national disability organizations. It provides a forum to exchange information amongst participant organizations to enhance the ability of Network participants to respond in a coordinated way to inform policies and programs to improve quality of life and promote inclusion for people with episodic disabilities. 2 Centre for Infectious Disease Prevention and Control, Government of Canada. National HIV Prevalence and Incidence Estimates for 2002, October 2003, p1. 3 Proctor, P. Looking Beyond the Silo: Disability Issues in HIV and Other Lifelong Episodic Conditions. Canadian Working