Older Adults with Intellectual Disabilities and Aging-in-Place

Judith Sandys, a long-time educator, advocate and thoughtful leader in the community living movement writes about the power of “assumptions” in determining the kind of life a vulnerable person may get to live out. Sandys calls out the danger of limiting assumptions that may put people in harm’s way. The relationship between how one thinks and how one treats another has been documented as a powerful psychosocial dynamic in the life of all people but especially those who may be devalued because of their disability. Given society’s tendency to transfer older, frail people to long-term care facilities when their support needs change, Judith notes the importance of questioning these assumptions.

Invariably, the assumptions we hold about any group of people – about what they can or cannot do, what they want and what they need – have a defining impact on how we act in relation to members of that group.

There was a time, not all that long ago, when many assumed that people who had intellectual disabilities belonged in large institutions. They assumed that such people would not be safe in the community, that they needed the care and protection that institutions were presumed to provide, that they would be happier with others who also had intellectual disabilities, etc. As we know, all too well, these assumptions led to the development of large government-operated institutions that incarcerated thousands of people with intellectual disabilities, subjecting many to dehumanizing and brutal conditions.

Over time, these assumptions changed and we assumed that people with intellectual disabilities belonged in the community, indeed that they needed to be in the community and that the community was better when everyone was included. These assumptions led to significant changes. Today, in Ontario, the large government-operated institutions for people with intellectual disabilities have closed, and while the journey to full inclusion is far from complete, thousands of people with intellectual disabilities – including many who are survivors of these old institutions – are living in the community.

But there are still some damaging assumptions that many hold that continue to put some people with intellectual disabilities at great risk. An example of this is the mistaken assumption that people with intellectual disabilities age faster and die sooner than do those in the general population. Yes, there are some people who have intellectual disabilities who do die at an early age (often because of serious health issues related to their disability). However, unless they have a serious health condition, once a person with an intellectual disability is an adult, their remaining life expectancy is usually not all that different than the general population. The impact of this assumption is that older people with intellectual disabilities are often treated as being very old, when in reality, they are not that old.

While none of us know how long we will live, studies indicate that healthy eating, frequent exercise, meaningful activity, mental stimulation, and close personal relationships are associated with increased longevity. And if they do not contribute to a longer life, they certainly contribute to a better one. Unfortunately, a good many older adults with intellectual disabilities are assumed to be beyond the point where these things matter, whose days are filled with sitting around doing nothing, day after day after day. “Yes,” we are told, “he’s only 62 but, you know, these people age more quickly….” Or “she retired (at 58) when the workshop closed down and now she just likes to chill out and take it easy.” This level of inactivity is not good for anyone, regardless of their age.

When we treat someone as if they were much older than they are, or are too old to do much of anything, chances are that they will internalize and act on these perceptions, thereby reinforcing our initial assumptions. Lack of stimulation and meaningful activity hasten the aging process. Ultimately, this denies some people with intellectual disabilities many years of stimulating and enriching activity and increases the likelihood of them being admitted to a long-term care facility.

We must challenge these damaging assumptions and actively support older adults with intellectual disabilities to lead good lives, at home, filled with meaningful activities and important relationships. Of course, as is always the case, as people get even older, they may well require additional supports. Nevertheless, the essential elements that add up to a good life never change. That’s what aging-in-place is all about.

Dr. Judith Sandys, now retired, is a former Dean of Community Services at Ryerson University and was also an Executive Director for community living associations for a total of 13 years.