Global-Report-Living-Colour-dr2-2

Inclusive Communities = Stronger Communities
GLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITY
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Table 10: Second Order Deinstitutionalization
SECOND ORDER DEINSTITUTIONALIZATION
Steven M. Eidelman
H. Rodney Sharp Professor of Human Services Policy and Leadership
Over the past six decades it has been family run organizations that have led the way in the
transformation of systems of support for people with intellectual disabilities, from large custodial
institutions to a life in the community. In the 1960’s and 1970’s, the early days of the movement
towards community based supports, families who were struggling without any services, providing care
24 hours a day, were frequently the first to open programmes in community settings for their sons and
daughters. Most often it was a programme that provided something to do during the day, both for
children who did not have the right to education and for adults. Later it was group homes. Those
family run organizations applied what was known at the time, which mimicked the model of care that
existed at that time – facility based services, but on a much smaller scale. As families and advocates
worked to get people out of institutions, these models became the foundation for the service system.
These services changed how people in institutions lived and provided relief for families who were
growing tired and wanted permanency for the future. While those changes were more than a change
in real estate and geography and were a considerable improvement from the institution, they lacked an
affirmative philosophy of person centeredness, self-determination, inclusion and full participation in the
life and fabric of the community. While that was certainly not the intention, in all too many instances it
has been the result.
Now, in light of the CRPD and the promises it puts forth about community living and supporting
families, we must prepare for Second Order Deinstitutionalization: The Remodeling or Transformation
of Existing Community Services, including traditional building-based day supports and many group
homes.
What is Second Order Deinstitutionalization? It is the remodeling or transformation of existing
community services. It is also difficult and important work. Many of the community programmes
developed in the past as alternatives to institutions are now the very programmes which must change.
Many of those programmes were developed by people who remain in leadership roles in family based
organizations and are invested in the programmes they helped to create. We have learned that physical
presence in the community does not necessarily assure integration and inclusion. While many
community services remain traditional, based on what we knew how to do in years past, we also see
examples of programmes that have learned how to include people with intellectual disabilities in both
organizational decision making as well as having them self-direct and choose their own supports and
services. We see programmes that support people living how they want, and with whom they want.
We see programmes supporting people to volunteer in their communities, gain jobs in the main
economy of their community and even in the creation of small businesses.
And all too often, programmes located nearby those fully including people with intellectual disabilities
are segregating and isolating people with intellectual disabilities. There is expertise, globally, in how to