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Let’s Walk the Talk… One Step at a Time... Together

It is my pleasure to share with you information about our recent network development initiative in the south west region of Ontario. On April 2nd, CPA Ontario hosted a SCI Leaders' Forum in London. We invited hospital representatives, researchers, community agencies, government policy-makers, as well as individuals from the private sector who serve people with SCI and their families to attend. We had 110 people RSVP and 80 experts with SCI participated, including the South West Local Health Integration Network (LIHN).

The SCI Leaders’ Forum had very clear objectives:

  • To develop a shared understanding of what changes are needed to the system of services and supports to enable people with spinal cord injury to achieve full participation
  • To explore how some of these changes could be achieved
  • To identify who within the local leadership would take action in the south west region – specifically in individual and systemic advocacy, and best practices

The goal of this SCI Leaders’ Forum was to create a south western SCI Solutions Alliance. The Alliance would then go on to develop a team of leaders’ (influential, decisive, powerful, and passionate SCI community stakeholders) who would unite to initiate change through advocating for the removal of barriers for individuals and within the system. They would also implement best practices for/with people with SCI in this region.

96% of the people in attendance supported the creation of an SCI Solutions Alliance.

At the forum there was a panel consisting of individuals with SCI who shared their personal experiences and challenges in navigating through services in acute care, rehab, and within the community. One individual on the panel courageously shared how he received wonderful service in rehab, but when it came time for him to be discharged, his only option was to live in a complex continuing care facility (similar to a nursing home) because attendant services could not accommodate the hours of service he needed to live at home with his wife and child. This person is under 30 years old. Finally, after a depressing experience away from his family in an institution, he moved home. In order for him to do so, he had to accept the fact that his only option was for his wife to quit her job and become his personal attendant.

It was heartbreaking listening to him describe all the intimate details of his personal care that his wife needed to do in order for him to live at home. It was even worse watching his wife holding their child and crying with despair in the corner of the conference room while her husband put his dignity aside and gave the audience a glimpse of his family’s devastating circumstance. At the end of his story, the room (including 80 service providers) was silent.

Currently our system of support for people with SCI has many “cracks” preventing recovery and the ability for people to regain their lives back successfully. Our system has so many bandage solutions and very little best practice solutions. Examples include patch funding, waiting lists for service, and inadequate discharge destinations, to name a few. We need a coordinated system of services for people with SCI or we will continue to have serious and sometimes fatal consequences. CPA Ontario can only do so much for its clients when essential services are not available.

Building SCI Solutions Alliances in parallel with a provincial strategy will produce better outcomes for people with SCI and their families. It will prevent unnecessary complications, and provide a manageable opportunity for people with SCI to be active, equal, and dignified individuals. CPA Ontario is developing regional SCI Solutions Alliances in:

  • Hamilton Niagara Haldimond Brant
  • Champlain
  • Erie St. Clair
  • South West

In addition to regional alliances, we have also developed a provincial entity called the Ontario SCI Solutions Alliance. This group of partnering organizations and consumers are focused on provincial systemic issues. Their current priorities are:

  • Improving access to a doctor providing primary care with experience in SCI in all communities
  • Improving supports around people who require assistance with breathing
  • Expanding the resources for attendant services across the province
  • Developing a strategy that coordinates all SCI services in all communities across the province

CPA Ontario’s vision is to form SCI Solutions Alliances across the province. Eventually these networks of concerned citizens will be in a position to successfully solve advocacy issues for people with SCI in Ontario. I look forward to sharing with you how these developing regional Alliances’ impact and improve service delivery across the province.

CPA Ontario wants individuals and partnering organizations to become actively involved in making changes. By working with members, or by becoming a member of a SCI Solutions Alliance in your community, you are taking necessary steps to improve the quality of life for all people with spinal cord injuries. Let’s walk the talk together.

 For more detailed information, please do not hesitate to contact me.

Peter Athanasopoulos
SCI Network and Service Manager
petera@cpaont.org
1 877 422 1112 ext. 260

Coming together is a beginning
Keeping together is progress
Working together is success

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