Aging with a Disability For the Project: “Aging with a Disability: Research Phase” Access Independent Living Services, Michael Mathieson, 2014 Funding provided by the Ontario Trillium Foundation Application ID number: 124068 North Yorkers for Disabled Persons Access Independent Living Services 2 Aging with a Disability © 2015 Principal Investigators: Michael Mathieson & Cathy Samuelson Report Developed by: Fady Shanouda M.A., Ph.D. Student & Samantha Walsh M.A., Ph.D. Candidate Trillium Research Advisory Committee: Michael Mathieson, Cathy Samuelson, Stacey Lintern & John Mossa Produced by: Access Independent Living Services 50 Ashwarren Road Toronto, Ontario M3J 1Z5 Canada www.accessils.ca Access Independent Living Services 3 Aging with a Disability © 2015 © June 2015 Access Independent Living Services Table of Contents Acknowledgements ....................................................................................................................5 Executive Summary ....................................................................................................................6 Purpose............................................................................................................................................................................................... 6 Methodology .................................................................................................................................................................................... 6 Findings.............................................................................................................................................................................................. 6 Conclusion ...................................................................................................................................................................................... 10 Recommendations ...................................................................................................................................................................... 10 Introduction .............................................................................................................................13 Aging with a Disability ............................................................................................................................................................ 13 Defining Disability ..................................................................................................................................................................... 14 Distinctions Between Seniors and People Aging with Disabilities ...................................................................... 14 Methodology ............................................................................................................................15 A Community-Based Research Project ............................................................................................................................. 15 Project History ............................................................................................................................................................................. 15 Phase 2 Starts............................................................................................................................................................................... 16 Facilitator Training .................................................................................................................................................................. 16 Focus Group Questions ............................................................................................................................................................. 16 Recruitment .................................................................................................................................................................................. 17 Focus Groups ................................................................................................................................................................................ 17 Focus Group Sessions ................................................................................................................................................................ 17 Participants................................................................................................................................................................................... 18 Limitations .................................................................................................................................................................................... 18 Ethics ................................................................................................................................................................................................ 19 Findings and Analysis ...............................................................................................................21 Choice in Everything: Current and Future Needs ........................................................................................................ 21 Social Positions of Disability ................................................................................................................................................. 22 Structural and Institutional Concerns .............................................................................................................................. 27 Gender, Sexuality, and Race................................................................................................................................................... 30 Risk of Abuse ................................................................................................................................................................................. 32 Gaps in Services ........................................................................................................................................................................... 34 Transportation ............................................................................................................................................................................ 38 Housing ........................................................................................................................................................................................... 40 Community and Culture .......................................................................................................................................................... 41 Assisted Dying .............................................................................................................................................................................. 43 Recommendations....................................................................................................................44 Policy and Regulatory Measures ......................................................................................................................................... 44 Funding ........................................................................................................................................................................................... 44 Service Delivery ........................................................................................................................................................................... 45 Education and Information ................................................................................................................................................... 45 Access Independent Living Services 4 Aging with a Disability © 2015 Conclusion ................................................................................................................................46 References ................................................................................................................................47 Appendices ...............................................................................................................................49 Glossary of Terms .....................................................................................................................68 Access Independent Living Services 5 Aging with a Disability © 2015 Acknowledgements We would like to express our deep appreciation to all the participants who attended focus groups. Your stories and experiences were the greatest contribution to the project. Thank you also to all those individuals who expressed interest in attending a focus group, but who were not able to attend for various reasons. We would also like to acknowledge the work of various staff at the Centre for Independent Living in Toronto (CILT). The advice given by Sandra Carpenter, Leisa DeBono, Ian Parker and Melanie Moore has been a great help throughout the project and the writing of this report. And it is with gratitude that we thank Nancy Barry and Carling Barry for their work on the project during Phase 1 and through the initial stages of Phase 2. Thank you both for developing the research topic and for bringing this project to the attention of local service providers. Special thanks must also go to John Mossa from CILT, who has spent considerable time and energy helping to guide the project, including the completion of this report. We would also like to acknowledge the work