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Institutions and the history of care and support

In this video, Rosemary Kayess, Eric Emerson and Jan Walmsley describe the history of institutions and the impact of deinstitutionalisation.
MAN: FutureLearn. [THEME MUSIC] UNSW Australia. The impact of institutions.
ROSEMARY KAYESS: Fundamentally, people with disabilities have been objectified, and pathologised, and medicalised, but the focus of supports for them was around caring for them, protecting them, which has meant isolating them and making them more vulnerable, and generally not protecting them.
JAN WALMSLEY: The dominant ideas of the early 20th century were that people were– they didn’t have any potential. They were damaged. There was a genetic component. So there was an inherited component in intellectual disability, and the way to manage that, and to prevent the problem becoming too large was to stop people having children. There were several ways of doing that. One of them was involuntary sterilisation– that it was OK, legal, to just sterilise people. And a lot of people were sterilised. And the other way which was applied in Australia, as well as the UK, and Europe, and the US, and Canada, was institutionalising people in very large custodial institutions and preventing them having a relationship with the opposite sex.
That mode of “care,” if you like, became discredited in around 1960, 1970. And from then on, we’ve seen the development of community solutions, of now the idea of self-directed support, which you have in the National Disability Insurance Scheme here in Australia– that people will be given a budget to buy their own support. So it’s gone a very long way from saying we’ve got to take this person and bung them in an institution for the rest of their lives, to thinking of them as citizens who should have their own income and decide how they spend it.
ERIC EMERSON: I mean, the impact of deinstitutionalisation on the lives, and the well-being, and quality of life for people with intellectual disability– I guess there’s two ways of answering that question– what has the impact been. One is to look to what extent has the quality of life or well-being of people changed as a result of deinstitutionalisation. And if you ask that question, then you’ll probably come to the conclusion that deinstitutionalisation has been a success.
Numerous studies have been undertaken in Australia, North America, and Europe, and the vast majority of those studies have shown that overall, the well-being or quality of life of people with intellectual disabilities has improved as a result of deinstitutionalisation– not in every respect, but in some important aspects. So people are out and about more, people are busier, people are participating in life of their communities more. And there have been, most apt to say, really no areas of quality of life or well-being which have deteriorated. So overall, it has been a success. But that’s if you just compare what life was like before with what life is like after.
And I guess the other question we need to ask is to what extent has deinstitutionalisation achieved what it set out to do? Because it wasn’t just about making life a bit better. It was about undoing the social exclusion faced by people with intellectual disabilities. And if you ask that kind of question– has it resulted in significant changes in the social exclusion of people with intellectual disabilities– then the answer largely is deinstitutionalisation has not succeeded in what it set out to do. So people are better off– absolutely no doubt about that. They’re living in nicer homes, their environments are better, et cetera. But they are still subject to widespread social exclusion.
They still have poorer health, they are still dying prematurely, et cetera. So it’s better than it was, what happened before. Supported living in community settings is definitely better for people than old institutions. And we need to get rid of those institutions which still remain. But it’s not as good as the aims of the policies. The aspirations were high. The aspirations were– and those aspirations really haven’t been achieved. I guess one question is, why hasn’t, or why didn’t deinstitutionalisation really achieve what it set out to do in terms of transforming the lives of people with intellectual disabilities? And there are, I guess, a number of possible answers to that.
One of the answers and one of the driving forces, which perpetuates the social exclusion of people with intellectual disabilities is that we haven’t really seen much evidence of public attitudes changing towards people with intellectual disabilities. Services have changed, and in a sense that was to bring services up to more contemporary expectations about what is fair for people, because we– in the 1960s and 1970s, it became readily apparent across– not just for people with intellectual disabilities, but for elderly people, for people with mental health problems– that what we were doing in terms of providing accommodation in large institutions was so out of step with what in our society we felt was fair and appropriate for people, that something had to change.
So we saw massive changes in the structure of the way we provide support or care for people with intellectual disabilities, but we didn’t see much change in public attitudes, which are still negative. A significant minority of people in the UK, in Australia, in North America, in Canada, hold quite negative beliefs about people with intellectual disabilities, about their value, about their worth, about the extent to which they have rights to bear children, to be part of the community, et cetera. And until those attitudes change, then it’s difficult to see how inclusion or social inclusion can really become fundamental for people with intellectual disabilities.
And as long as those pejorative attitudes persist within our communities, then social exclusion, discrimination, harassment, bullying, are going to continue. The other, I guess, issue around deinstitutionalisation– to the extent to which it didn’t really achieve what it set out to achieve– is that deinstituationalisation was primarily about bricks and mortar. And the bricks and mortar are much better now, they’re much better than they were. So people are living in more homely accommodation, they’re living in proper houses rather than wards of large scale institutions. There’s been a modest increase in investment in providing personal support to people with intellectual disabilities.
But it was more about providing care in a different environment rather than changing the way support is provided to people, and that’s something we’re still struggling with. How do you provide support to enable people to do what they want to do with their lives rather than providing care, which is largely about providing support so that people do what we think they should be doing with their lives? And we’re still really struggling with that in virtually every country that I have– well, in every country which I’ve ever visited.

In Week 1, we introduced institutionalisation as an example of the history of exclusion of disabled people. In this step, we explore institutionalisation in more detail and examine it in the context of care and support. This step has a particular focus on institutionalisation and deinstitutionalisation for people with intellectual disabilities.

Eric Emerson’s closing remarks in the above video capture an important perspective on care and support. He says that in all the countries he has visited, they are still trying to work out how to “provide support to enable people to do what they want to do with their lives rather than providing care, which is largely about providing support so that people do what we think they should be doing with their lives.”

Eric argues that deinstitutionalisation — the policy and practice of closing down large residential institutions so that people with disabilities can live in the community — has created a significant change in disability services and has overall improved the wellbeing of people with intellectual disability. But despite this, deinstitutionalisation has not achieved its overall goal — to undo the social exclusion of people with intellectual disabilities.

Talking points

  • What were the goals of deinstitutionalisation?
  • In what ways has deinstitutionalisation been successful? In what ways has it been unsuccessful? Why?
  • What impact do you think deinstitutionalisation has had on the ability of people with disabilities to live good lives?

In this step, we focused on the late-20th century movements away from institutionalised care. In the next step, we look at what care and support look like today.

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