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Inclusive Communities = Stronger Communities GLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITY 119 moved to community options while those with more significant challenges were often relocated to other institutional settings such as nursing homes, rehabilitation centres or other similar long term care facilities. We know that deinstitutionalization is not a simple matter of closing a facility and moving residents to the community. To be successful and sustainable, the process must involve careful individual and systems level planning. Additional community based supports must often be created and/or expanded to support those returning to community as well as those who are already in community (usually with families). Adequate and appropriate support must be provided to both individuals and families. Full consideration must be given to ensuring that individuals become full and participating members of their community and not have simply exchanged one institutional setting for another that is merely different in size and location. Self-advocates from across the world have told us that life in community – inclusion in community – is possible only if it comes with the ability to make choices, take risks and have control. As countries complete their deinstitutionalization efforts, continue to close existing facilities and/or begin to consider the merits of initiating such a process, there are several emerging and ongoing challenges that must be addressed. ‰ Other Institutional Settings Stories told to us by families and self-advocates, particularly in countries where traditional institutions specifically for people with intellectual disabilities have been closed reveal an increasing trend of using other institutional placements as an acceptable option. In countries such as Canada, the USA, Japan, New Zealand, Australia and the UK families and self AUSTRALIA There are a variety of lessons learned – eg. people invariably live better lives, families often resist the move, government commitment is influenced primarily driven by the cost, it is harder to develop individual alternatives than group ones (e.g. group homes). INDIA “Our students sometimes come from home with nothing: no school equipment or basic necessities. We are starting to keep chickens and grow vegetables so we can improve the children’s diet and help them stay healthy.” One young boy at the school adds: “I like to board at the school because there I have a bed with a proper mattress. We play with children from the mainstream classes at break times.” His friend, a young girl, adds: “I would even prefer to stay at weekends too.” Their parents reported being pleased that their children were now in school, where they are learning more than they were at home, and they do not have to travel so far each day.
120 Inclusive Communities = Stronger Communities GLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITY AUSTRALIA “Governments are not being held accountable for what they have agreed to under the CRDP. There are not “a lot of votes” in the provision of disability services, and little pressure from the public to deliver or improve disability services. Many people with disabilities and their families and carers do not have a strong voice to influence the delivery of services. There is an important place for campaigns and external advocates to hold governments accountable and to raise awareness of people's needs and rights.” advocates are often given little or no choice in housing options, often being referred to seniors’ residences, nursing homes, and/or other inappropriate long term care settings. Additionally, the size of these settings also continue to grow as governments cut back spending in the social sector. ‰ Something is Better Than Nothing In many countries, particularly low income countries where community supports and services to families and individuals are minimal or nonexistent institutions are being considered as a legitimate response to the critical need for support services. Sometimes, due to cultural issues, but more often because no other services are available or being offered, families mistakenly see this offer of institutional care as a step forward. ‰ Services as Outcomes Many deinstitutionalization processes still measure success in terms of the number of buildings closed, placements made, and residential options created. Doing so however confuses “tools” with outcomes. The closure of an institution is not the goal; it is merely the result of assisting people to take their rightful place in community. If in helping people leave an institution we do not ensure that they have meaningful lives in community, then the process is seriously flawed. Many countries continue to rely almost exclusively on traditional residential models such as group homes. Yet a move to a group home is a “success” only if it provides a vehicle through which the person can create for themselves a meaningful and participatory life in community. Experience has taught us that options such as group homes, while an expedient tool to assist in the deinstitutionalization process, do not necessarily enable meaningful lives in
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