Time to celebrate or to take to the streets? 20 years since the closure of Sweden’s larger institutions for disabled people.

It has been 20 years since Sweden’s deadline for the closure of country’s larger institutions, on January 1, 2000. People who have spent a short time or up to a whole lifetime, sometimes 70 years or more, in large institutions, were moved into small group homes for up to 5 – 6 persons. Within these small group homes, people had their own individual flats. Seeing one’s name for the first time on the door brought tears to many faces. Receiving the key for one’s own flat was an enormous experience.

These same people were some of those who were against the decision to move from the large institution. They could not imagine how life would function in their own flat. In total, 85% of people living in institutions were against this political decision. Others who were against included staff members, who wondered where they would work. Families, as well, were worried that their loved ones would be worse off than in the large institutions. Politicians were worried about how the budget would pay for the new services, and whether it would be sufficient.

After the political decision was carried out, only 15% remained against the closure of the large institutions. People experienced life as calmer and with more security in the smaller units, or within the walls of their own homes. Staff were reeducated and found the new jobs rewarding, or accepted that it was time to move on to a new career. Family saw that their loved ones were feeling better and better.

So yes, perhaps it seems that we have something to celebrate. But, what is happening today? More group homes are being built and the old ones have remained. Due to the housing market and other factors, the small group homes did not prove to be a temporary living arrangement – as was the intention – but a permanent one for some. Some families are not receiving personal assistance for their children and those who fail to cope are forced to accept placements in the small institutions.

I have taken pride in saying that in Sweden, children are not placed in “homes”, but in foster families, when their biological family, in spite of support, cannot cope. But, this is no longer true.

The new politicians were not around at the time of closing of the larger institutions, which had to go due to poor living conditions and a high level of violence and abuse. New politicians seek change and think living in an institution is cheaper. No heed is being paid to the research which shows that if a child is placed in an institution, they will acquire disabilities they did not have before being admitted. Nor the research showing that there is a higher risk of violence and abuse in institutions.

ENIL has reported on cuts to support for disabled people in Sweden and in other EU countries. The cuts in personal assistance have also been highlighted by the Committee on the Rights of Persons with Disabilities when examining Sweden’s initial report. But again, these recommendations are being ignored.

So, maybe we celebrate with the celebration being to take to the streets. We have demonstrated and demonstrated, but if we demonstrate again, maybe our message will be heard: CLOSE THE INSTITUTIONS. Instead, let disabled people live in society through community living arrangements that allow for their self-determination and accessing equality, as all of the other citizens in our communities.

Jamie Bolling, Director – Independent Living Institute, Stockholm

[Photo shows members of JAG protesting in the past against plans of the Swedish government to take support back]