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Adults with intellectual disabilities must be afforded the opportunity to live in typical houses and communities where they can exercise their full rights and responsibilities as citizens. Living in the community is a right of all Canadian citizens and thus public policy in Canada must facilitate, accommodate and enable the free and full exercise of this right.
Policy Context – National
In Canada today, a significant gap exists between the housing needed and the housing available. Even in situations where affordable and accessible housing is available, people with intellectual disabilities are unable to acquire these units due to a lack of needed supports. Adults with intellectual disabilities are all too often housed in facilities that are clearly not best suited to their needs. Despite research that unequivocally demonstrates that institutional placements are not in the best interests of people with intellectual disabilities, in provinces and territories throughout Canada, people with intellectual disabilities are routinely placed in large institutions for persons with intellectual disabilities, nursing and seniors homes, special care and personal care homes, rehabilitation centers and other institutional environments. Nova Scotia, for example, states that institutions are an acceptable part of its residential continuum for people with disabilities and in recent years has actually increased its institutional capacity.
The United Nations Convention on the Rights of Persons with Disabilities recognizes in Article 19 that all persons with disabilities have the right to “live in the community, with choices equal to others.” Article 19(a) requires that States Parties ensure “Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement.” Additionally, Article 28.2(d) requires States Parties to “ensure access by persons with disabilities to public housing programmes.”
Policy Context – Newfoundland and Labrador
In the 1980’s the Newfoundland & Labrador Government committed to community living and deinstitutionalization. Newfoundland & Labrador Association for Community Living worked in partnership with government to close several institutions and individuals with intellectual disabilities were assisted to move from the Waterford Hospital to community living under the Right Futures Project. The success of these initiatives has been recognized internationally as leading progressive social policy. In the early 1990’s group homes were also closed. Individualized program planning and innovative community based options were developed; and personal care homes/nursing homes were never advanced as appropriate housing options. Since that time, home support ceilings and funding freezes have created crises in the community. Throughout the province, especially in Labrador, there is an inadequate housing stock and support service availability. Despite principled commitments and a history of successful community living and research that demonstrates that institutional placements are not appropriate for individuals with intellectual disabilities, in Newfoundland and Labrador today, individuals with intellectual disabilities are being placed in long term care centres and personal care homes.
Discussion – National
People with intellectual disabilities generally want the same kinds of housing that other citizens want: independent, affordable apartments or houses, with access to needed support. People want to live independently. They want to make their own decisions regarding whom to live with, where to live, and what to do with their time. In Canada today, however, many individuals (and their families) continue to be presented with options that do not support lifestyles of choice but rather assume that people with intellectual disabilities will stay indefinitely in the family home, or move into group home programs or other more institutional environments.
In many communities there is a lack of accessible, affordable housing. High rates of poverty and lack of supports make a home in community unobtainable for many. A majority of people are unable to obtain needed independent, person-centered planning. The service system still advances congregate options; current funding practices do not encourage innovation or individuality, and ultimately has not yet acknowledged the need to separate accommodation from supports. Housing choices for adults (outside the family home) are currently provided in a manner more geared to meeting the needs of the system rather than of the individual it is meant to serve. Often, individuals are housed where space is available, rather than in a home suited to their specific needs. People with intellectual disabilities also face attitudes by families and support organizations that fear for their safety or question their ability to live on their own.
People with intellectual disabilities want ‘supported living’ not ‘residential options’ or ‘specialized residential facilities’. They want a safe and decent home of their own, where they can exercise choice and control in day to day decisions, have tenure as tenants or as homeowners, have access to personalized assistance/support and support from others who care about and respect them. Basic housing standards that apply for other Canadians equally apply for people with intellectual disabilities: adequate, suitable and affordable. Housing should be accessible and enable full inclusion in the community. Individuals must be directly involved in planning and choosing their housing and support services, and necessary funding must be portable and linked to and controlled by the individual rather than an agency or facility. While still a predominant response, traditional housing models such as block funded group homes typically fall short on dimensions of individual control, choice and decision making. All too often, individuals with intellectual disabilities are ‘placed’ in these homes rather than choosing to live there. Group homes should no longer be accepted as the primary or preferred residential response for people with intellectual disabilities.
Institutions deny people basic rights of citizenship, personal control, decision making, and independence. People who have lived in these facilities tell of the abuse, isolation and suffering that occurs. An institution represents an approach that denies choice, denies opportunity; congregates, segregates and isolates people. An institution can never be a “home”. If people with intellectual disabilities are to secure and affirm their right to live in community, then these types of institutional placements must cease.
Newfoundland & Labrador Association for Community Living’s Position
The Newfoundland & Labrador Association for Community Living recommends action in the following areas:
1. Affordable, Accessible and Attainable Housing – Work with the necessary federal, provincial and municipal governments to ensure investments are secured to create the necessary housing stock adequate to meet the current and future needs of individuals with intellectual disabilities. Disability should be incorporated into the assessment of Core Housing Need by Canada Mortgage and Housing Corporation and Newfoundland and Labrador Housing Corporation.
2. Disability Related Supports – Work with the Disability Policy Office and the Department of Health and Community Services to:
3. Admissions – Ask government to reconfirm and re-establish the commitment to halt admissions of individuals with intellectual disabilities, under sixty-five, into institutional facilities of all types.
4. Deinstitutionalization – Work with government to assist individuals with intellectual disabilities currently living in inappropriate institutional environments to move back to the community.
5. Investment Principles – Work with NLHC and the Disability Policy Office to ensure that Social Housing Programs such as the Supportive Living Community Partnership Program and National Homelessness Initiative are invested in housing options that meet the principles of community living and inclusion.
6. Reinvestment – Funds that are saved from past/future closure of institutions, including Right Future’s, should be reinvested into the development and expansion of community supports and services for individuals with intellectual disabilities.
7. United Nations Convention – Provide information to individuals with intellectual disabilities, his/her family members/supporters, government departments and community leaders to ensure the human rights of individuals with intellectual disabilities, including the right to live in the community (Article 19).
8. Housing Choices – Private accommodations with support services as required. All supportive living options are based on choice, self- determination and individualized funding. Funding for needed supports should be portable and tied to the individual rather than the agency or facility.
9. Capacity Building – There is a need for the development of an organized system to enable independent facilitators to work with individuals and families to develop person centered plans, secure appropriate funding, help set up support structures, secure housing and models of support beyond the traditional methods. This may be possible through the establishment of partnerships with other community organizations who have a mandate to support the development of community housing options and transitions (e.g. St. John’s Homelessness Committee).
10. Review of Existing Best Practices – There is a need to review housing and supports available in other jurisdictions to determine if any have merit in Newfoundland & Labrador. Newfoundland & Labrador Association for Community Living will determine existing best practices that are working well in their areas (e.g. individualized housing, direct funding).