Voices of Advocacy
Family Networks play a key role in connecting persons with a disability and their families/networks of support.
Informal exchange of experience and knowledge is critical to building confidence, identifying systemic need for change, and building strong networks of, potentially, personal allies and innovators.
Many early efforts to close institutions and change the thinking around disability and society came from families who said “NO” to the status quo.
We are still on a pathway to inclusion, change, and citizenship for persons with a disability – keep talking and sharing . . . we all learn.
Below are some local networks:
Down Syndrome Association – National Capital Region
Leeds and Grenville Family Network
Siblings Canada (formerly The Sibling Collaborative)
Mental Illness Caregivers Association of Canada (based in Ottawa)
Ontario Prader Willi Syndrome Association
Autism Ontario east region. Autism Ontario has chapters across the province. Their website has an events page that allows readers to filter by region.
Brain Injury Association of the Ottawa Valley. (neat newsletter!)
Families often take on an advisory role with an agency or program, offering another way to learn and connect. Some examples are:
CHEO’s Autism Family Advisory Committee is part of the hospital’s Family Advisory Council.
FASD Ontario, a joint government/industry/caregiver network, has a Family Caregiver Support Group Project for persons with fetal alcohol spectrum disorder and their families/caregivers. Applications for a caregiver support group grant is currently open for applications.
Provincial and National Advocacy Organizations that have some key social and service policy perspectives.
Individualized Funding Coalition for Ontario. (IFCO)
People for Personalized Funding. Formerly Special Services at Home Passport Provincial Coalition, this group has similar goals as IFCO.
Canadian Centre for Caregiving Excellence. This is a relatively new organization, but one which is seeking partnerships and different perspectives on the impacts of the lack of financial and human service supports for persons with disabilities and their families/caregiver circles of support.
The Ontario Caregiver Organization focuses on the concerns and challenges of caregivers supporting persons with varying impairments and challenges.
Microboards Ontario another relatively new organization in Ontario, has the goal of explaining the role of formalized support circles (Microboards or Arohas) in supporting a person with a disability to live a good life, connected with their community. They feature training courses, commencing in July 2022.