Kay Wigle is a local association board member, social activist, and former Coordinator of the DSW program at Fanshawe College in London (retired). In this week’s Aging-in-Place series, Wigle raises the thorny question about the acceptance of long-term care placement as a normative part of the aging process. She challenges this orthodoxy for everyone, but especially for people who have a developmental disability. Wigle brings to light the hard lessons learned by the community living movement through the experience of the “deinstitutionalization” of thousands of citizens with disabilities and the closing of all government-operated facilities. According to her, badly needed LTC reform could learn from this effort.
A question frequently asked is, “isn’t part of the normalization process that people with developmental disabilities enter long-term care (LTC) facilities when they are seniors?” My answer is that it is not normal for anyone to live in an LTC institution.
LTC facilities by their nature deny individuality, autonomy, self-determination and eventually break a person’s spirit. People with developmental disabilities already did their time in institutions. The Ontario government apologized for the history of neglect and abuse people experienced while institutionalized. There was a successful class-action lawsuit. So why is it considered acceptable to once again institutionalize people with disabilities in LTC?
There are currently thousands of people with developmental disabilities in LTC, some well under the age of 65. It’s become a dumping ground when there appear to be no other options. Institutional care is stigmatizing and it leaves the impression that people in LTC are no longer of value to society or their communities.
People with disabilities have experienced discrimination based on their disability, while seniors experience ageism. Neither stereotype has a place in our society.
One of the justifications I’ve heard for institutionalizing people in LTC is that they are better off with their own kind. This assumption would mean that because I am a senior, I should just hang out with other seniors because, after all, aren’t we all the same? I can tell you: I don’t like all seniors and that is because aside from age, we don’t necessarily share common interests. The same applies to people with disabilities: Just because they have a disability does not mean they are the same or have the same needs. We must value people’s unique talents and gifts, and let them decide how they want to be supported and with whom.
Over 90% of seniors say they do not want to go into LTC. So why hasn’t the LTC system learned from the errors of past institutional practices? I have heard people argue long-term care homes are not institutions. To be clear, they are.
Ontario already has success with deinstitutionalization and the development of small community homes, individualized supports, and direct funding where things are familiar and comfortable. People’s quality of life matters, regardless of age or disability. The Community Living movement, from institutions to community homes, now needs to be applied to LTC. The blueprint is there, it now takes the political will to make the change.
There are many horror stories about the COVID-19 pandemic and people dying alone in LTC. This includes people with disabilities. It is devastating to imagine your loved one taking their last breath without someone who loves them being at their side, holding their hand. But this has become a reality that we hear repeatedly in the news. Surely, this tragic experience in LTC as a result of the pandemic has to be the impetus for change in Ontario.
I’ve had the privilege of knowing many people with disabilities. When signing the papers to be a legal guardian for one woman with a developmental disability, she made her wishes clear as she was dealing with issues related to aging. She wanted to die at home and if I didn’t respect her wishes, she told me she would come back and haunt me.
Strong words, clear message.
Kay Wigle is a retired Coordinator for the Developmental Services Worker Program at Fanshawe College and member of Seniors for Social Action Ontario