People with spinal cord injuries & disease who use respiratory supports deserve to live a full life in Ontario society. Many pioneers have succeeded, living for decades in our communities, establishing a high quality of life and making valuable contributions to our society.
But many have encountered barriers and some are forced to reside in institutional settings. Some who live in the community feel vulnerable and unsafe. People who are newly injured or diagnosed face interminable hospital stays and inadequate access to rehabilitation and primary health care. Their overburdened caregivers contend with insufficient and uncoordinated supports and wait lists.
This paper presents the challenges experienced by people with spinal cord injury & disease (SCID) who require respiratory supports and seek to live fully in the community. It also proposes solutions.