The statement that most caught my attention in the recently released Ontario COVID-19 Long-term Care Commission Report reads:
The average age of long-term care residents . . . is 84. The Commission heard that residents typically enter a long-term care home in the last two years of their life, and that approximately 22,000 long-term care residents die every year. (p. 41)
Since a recent survey found that nine out of ten Canadian respondents prefer to live in their homes as long as possible, one wonders why society cannot manage its resources so that wish could happen for all to the end of life. Why concede that the last few years should unfold for so many in an environment as foreign to home, family and community as imaginable?
But, more shocking to me was the sentence in the report immediately following the above statement:
Of the more than 78,000 residents currently in Ontario long-term care homes, a small proportion are younger and have needs that require the assistance of long-term care.
I understand about 2,000 of these “younger” residents are persons with intellectual challenges and that nursing home placement for persons with developmental disabilities is occurring more frequently. This, even though decades of experience here and in other jurisdictions show that even the most vulnerable individuals with complex needs can live successfully in community. Other than lack of political will and bureaucratic convenience, there is no reason for reviving institutionalization of even small numbers of this population into long-term care nursing facilities.
Ironically, what we have learned about supporting community living based on individual needs in the last five decades could not only reverse this sad trend toward re-institutionalization, but also liberate some of our senior population that reside in these facilities, or at least stem the flow of referrals into them until they are no longer viable operations in five to 10 years or so.
Still, the Commission devotes so much of its attention to improving facilities and operations of a system that is fundamentally contrary to what Canadians would choose for their last years. It gives only passing reference to existing community care and support models in other jurisdictions successfully demonstrating real alternatives.
What the community living movement has shown is that ploughing capital into large, special facilities to house people with complex needs of whatever age is a bad investment with life-limiting and even detrimental outcomes for residents. Upgrading or building new congregate facilities with more “beds”, however, is the easy solution and frequently the only option for families with aging parents, and now, it appears, younger adults with complex needs. This “contains” the issue, until, of course, a pandemic exposes its failings and infection and death counts arouse public outrage.
The alternative is challenging to implement but doable, and requires that we redirect our investment of both financial and social capital by:
- Supporting individuals in the identification of their own needs and how they may be met within their community of choice;
- Engaging families and friends where possible in this individualized planning and implementation process;
- Arranging the appropriate array of service supports, including highly specialized modes, for delivery in home and/or community; and
- Creating and implementing individualized plans that extend beyond care and maintenance to include personal fulfillment and community engagement where desired.
The main ingredients of this approach are people – family, friends, service personnel – and access to highly individualized financial resources to meet the cost of daily living as well as the extraordinary costs of living that people with complex needs require. Stable home bases are critically important, and they can be in a family home, independent living, or at a very small community scale. The “residence”, however, should not be the life-defining aspect of the individual’s experience regardless of age, health status, or physical or mental limitations.
This model of care and support has worked for persons with even severe physical and developmental challenges. Political will and policy and resource commitments could make it universal to all vulnerable people now in long-term care facilities or at risk of placement in them.
The promise for non-senior adults with complex needs is a more fulfilling life journey. And, for frail and dependent seniors, one wonders whether not just the last two years of their lives, but perhaps the last decade or so of life, might not be more fulfilling as well.