In this week’s Supporting Aging-in-Place story, well-known community living researcher, activist, author and speaker Dr. John Lord writes through the lived experience of his parental role as he discusses the crisis in Ontario’s long-term care system. Expressing both joy and worry for his daughter, John reminds us of the concern shared by all parents – the uncertain future for their children. With literally thousands of people who have a developmental disability now in long-term care facilities and with a community-based service system underfunded and unable to keep pace with the demands for good person-centred living options, John confirms what families and associations alike must do to help safeguard people’s future in uncertain times.

By John Lord

As an older parent of a vibrant, healthy daughter with Down syndrome, I worry about what the future may hold for her. Although my daughter Karen is currently engaged in her community, with a job, a network of friends, and a wonderful apartment in a housing co-op, living in Ontario puts her at risk.

Currently, there are thousands of people with developmental disabilities in Ontario who reside in long-term care institutions. Many people with Down syndrome much younger than Karen have been forced to live in nursing homes. This is totally inappropriate and is happening because the Ontario government is allowing, and even encouraging it to happen.

There are many reasons why people should never be placed in an institution. Long-term care facilities do not provide the personal support and choice that people receive in the community. Personal control is extremely limited and rigid schedules remove choice and autonomy. We also know from research that people’s health tends to decrease once they are placed in a nursing home.

The scariest part for families is that we know the history of institutions. Prior to 2010, for more than 150 years, our sons and daughters with disabilities were often institutionalized. We know how oppressive and degrading institutions are. We must never forget this history.

As families, how do we begin to address this serious situation of people with disabilities of all ages being placed in nursing homes?

First, we need to imagine better and demand that the government and local associations provide personalized, meaningful supports for everyone. We need to speak up for a system that rejects the narrative that makes nursing homes sound attractive. We need to embrace “aging-in-place” and advocate with service providers to honour the vision and reality of what this means. We can write letters to the government and to the opposition parties to push for community alternatives that support aging-in-place.

Second, we need to connect with allies that support the right of people with disabilities to age in place in the community. Community Living Ontario and Seniors for Social Action are two groups that are advocating for alternatives. A caring movement of families, researchers, and activists is emerging in Ontario in response to the disastrous way that long-term care has treated people during the pandemic. We can also build common causes with seniors’ groups that want to see alternatives to institutions.

Third, within our own families and local communities, we need to implement strategies that reduce barriers to aging-in-place. Building support networks and support circles is one powerful way to ensure that our sons and daughters have caring relationships in their lives. Over the years, I have witnessed several support circles resist institutionalization and create meaningful support for people to remain in their own homes. Nothing is more important than the valued relationships we build for ourselves and our sons and daughters.

We can imagine better, and we can also do better. In the 1990s, thousands of people with disabilities were moved from long-term care facilities to the community, but in the last twenty years, the movement has gone in the opposite direction. Now is the time to reverse that trend once again.

For the sake of our children.

John Lord is a parent, researcher, and author who lives in Kitchener-Waterloo. John has written extensively on community living, deinstitutionalization, and social inclusion. He is the author of several books, including Pathways to Inclusion: Building a New Story with People and Communities. He is a member of the advocacy group, Seniors for Social Action.