Op-Ed: Stop Normalizing Long-Term Care for People Who Have Developmental Disabilities

Over the past couple of weeks, we have highlighted the issue of people who have intellectual or developmental disabilities (IDD), being put into long-term care (LTC) facilities, well before the age of 65. Neither I nor any member of my family, friends or colleagues, have ever expressed a desire to live in a long-term care facility, at ANY age. Yet somehow, we’ve decided that grouping one vulnerable, de-valued group and warehousing them with another, makes sense. After all, what could possibly go wrong?

Unfortunately, we have normalized this behaviour by:

  1. Developing guidelines on transitioning people from living in the community to living in an LTC facility. Since it is written and validated by many, those who are in leadership positions and have come to our sector more recently may see this as a standard operating procedure.
  1. Creating the illusion of choice.
    Imagine a person who is fifty years old and lives in the family home, suddenly finds finding themselves alone.  The choice between LTC and nothing is no choice. A rock and a hard place should never be considered a real choice.
  1. Saying “Fifty is eighty for people who have IDD.”
    I have heard many times, that being 50 years old with IDD, is like being 80 for the rest of the population. This is yet another label that we place on a whole group, to rationalize how we treat people, allowing us to sleep better at night.While some conditions associated with IDD pre-dispose a person to certain health-related conditions which might cause a person to age more quickly, the same can be said for the myriad of conditions that each of us may be genetically predisposed to such as arthritis, asthma, early-onset dementia, heart conditions and various cancers. If people who have IDD are ageing more quickly, it is largely our fault. Lack of equitable access to the social determinants of health will do that to a person.
  1. Not heeding the lessons of our institutional past.
    In 2013, Ontario’s Premier apologized for our long institutional history. She acknowledged them as dangerous, segregating, congregating, and isolating places that lacked oversight and accountability. They lacked proper health and safety standards. They lacked personal support and stimulation. One need only look at the military’s recent report of conditions in LTC, to see the tragic similarities, not to mention over 3,000 COVID related deaths.
  1. Lack of aspirational expectations.
    Through our medical, educational, and social policies and practices, we teach people to expect less and to be less. Under this lens, ending up in an LTC facility at 35 is simply the natural progression of a de-valued life.

So what should we do?

  1. Shut the front door!
    We must revise transfer admission guidelines to de-normalize this practice and take a community-first approach. We must create guidelines that will allow people to age in place and look to agencies who are already doing it well.
  1. Ensure real choice.
    Shouldn’t a person who is in crisis, be entitled to the best we have to offer, rather than an overflow option as the only choice? We’ve started down the road of mandated services with the minimum $5000 Passport allocation and the de facto entitlement to support, for youth who are wards of the state and are transitioning to the adult system. We should also mandate supports to those who are in crisis and to those who are at risk of a long-term care facility placement.
  1. Coordination between ministries.
    It will require significant coordination to successfully engage families and people in LTC to assist with repatriating willing people to their community. Policies, protocols and resources between the Ministry of Children, Community and Social Services, and the Ministries of Health and Long Term Care will be a must. It will also require coordination and cooperation between the government and the agencies that will be involved with welcoming people. Let’s get started!
  1. Raise the bar of expectations.
    None of us aspire to live in a nursing home. Consequently, we must redouble our efforts to inspire possibilities and raise expectations for lives in community that are typical for all, regardless of label. We should all be offered the choice and the matching supports that allow us to age in place in our home for life.

Each of us must commit to supporting these actions by working together with the government to ensure people can remain in their home and community as they wish and to welcome people back into community. I believe we are ready and willing to do this.

After all, we’ve done it before. It’s time to do it again.

Chris Beesley
CEO, Community Living Ontario