LIVING A GOOD LIFE IN YOUR OWN HOME

Based on a presentation given to Inclusion Ireland, Dublin, 14th September 2016.

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  • Ireland is still to ratify the United Nations Convention on the Rights of People with Disabilities.
  • Errol Cocks writes about Supported Living in Australia and Individualised Funding.
  • It is important for people with disabilities and their families to be in control and not government / NGOs.

In 2007, we started a research project to look at what we have called “individual supported living” (ISL). Our idea about ISL was based on Article 19 from the United Nations Convention on the Rights of People with Disabilities (UNCRPD). Many countries have signed up to the UNCRPD, including Ireland about 10 years ago, although I’m not sure that Ireland has yet ratified the Convention. Article 19 addresses the critical issue of the conditions under which people with disability live. It states that people with disabilities should have:

  • …the opportunities to choose their place of residence and where and with whom they live…and are not obliged to live in a particular living arrangement.
  • …access to a range of in-home residential and other support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.

We wanted to challenge some of the common assumptions that contribute to people with disabilities in many parts of the world still living in institutions or other forms of congregate care such as hostels or group homes. Our research project was based on positive assumptions about community living, including:

  • If the right individualised supports are provided, all people with disabilities can live in their own home.
  • They do not have to be “independent” in order for this to happen – in fact who is really “independent”? – human beings are interdependent.
  • They do not have to live with other people with disabilities – unless they freely choose to do so.

In Australia, major reform of disability services, especially for people with intellectual and developmental disabilities, has been underway since the 1950s. The first “parent revolution” occurred in the 1950s and brought about some fundamental changes. This happened when parents became frustrated that their sons and daughters with disabilities were not welcomed into education and work. In Australia, and other Western countries, parents set up non-government organisations (NGOs) that sought community and political support to establish hostels, educational/day centres, and sheltered workshops.

 

Unfortunately, as parents became older, their influence waned as many of these NGOs grew much larger, much more formal and dominated by management. This growth was accompanied by substantial investment of financial, social, and political capital that is still a very powerful influence on how services and support are provided. Reform of many of these large NGOs is very difficult and sometimes strongly resisted. Even in 2016 in Australia, congregation of people with disabilities is still the dominant provision of living services – the Australian Institute for Health and Welfare reported data in 2016 highlights that 16,751 people with disabilities lived in group homes and 2,800 in institutions in 2014-15. These conditions make reform extremely challenging for governments and service providers – but far from impossible even if the intention and will is not there.

 

In Australia, major reform in disability policy and practice accelerated from the 1980s. Here, I will focus on what have been some of the major influences and types of reform. These are shared with other Western countries that have also committed to reforms.

 

  1. There is a contemporary parent movement that challenges education systems to include their sons and daughters, and employment systems to include them in work. At the same time, families are less willing for their adult children to be placed in congregate, institutional settings and they advocate for ordinary homes including individual supported living. Real reform is occurring through family use of “circles of friends”, “Microboards”, and small business/enterprise initiatives.
  2. Important social theories have strongly influenced disability policies and practices. These include “normalisation”, “social role valorisation”, “person-centred” principles and practices, and the “social model” of disability.
  3. In many parts of the world, the dominance of the medical approach to disability has been challenged. Here in my hometown, in the early 1970s, psychiatric nurses were replaced by workers called “social trainers” who were educated within a developmental/educational rather than a medical If people with disabilities were ill, they received appropriate medical and nursing care, but their lives were not governed by a medical framework.
  4. A related development was the separation of disability services from health and mental health. When I entered the disability field in the early 1970s, disability services were part of mental health services. By the 1980s, disability services were brought under an independent Disability Services Commission which enabled various reforms to occur.
  5. Finally, two innovations occurred in Western Australia around 1990 that have made a major contribution to reform of services and the development of individual supported living. The first was the establishment of Local Area Coordinators (LACs) who, at least in the first 10-15 years, received substantial training around the principles mentioned above and also with the involvement of family members and people with disabilities. This association of key stakeholders had many benefits in deepening the understanding of LACs about families and disability. At the same time, LACs were able to provide small amounts of discretionary funding to families that enabled small but important changes to occur such as provision of a ramp, or even a family holiday. This was the beginning in Australia of individualised funding, a powerful contribution to reform, enabling people with disabilities and their families to strongly influence and make decisions about their own lives. Individualised funding, if it comes under the influence of families and people with disabilities rather than flowing directly from governments to NGOs, is a critical strategy to enable people with disabilities to live in their own homes.

 

The aims of the Individual Supported Living (ISL) Project that we began in 2007 were to:

  • describe ISL for adults with intellectual and developmental disabilities in its different forms;
  • establish an evidence base for quality in ISL arrangements; and
  • provide education and training focused on ISL.

The project was funded by the Australian Research Council and ran across 3 States: Western Australia, Victoria, and New South Wales. We spent a lot of time learning about ISL by talking with people with disabilities, families, NGOs, and support workers and eventually produced a tool for measuring quality in ISL arrangements. We did this by having small teams (3 or 4) meet with people in ISL arrangements, their families, and support workers, and use the tool to assess quality aspects of each arrangement. An experienced person led the team and team members were provided with training. To date we have completed 120 reviews and intend to complete around another 145. So we are developing a very comprehensive description of different ways in which ISL arrangements occur and what they achieve in outcomes for adults with disabilities. This stage of the project will be completed in June 2017.

 

The quality tool we use has 8 key themes that include:

  1. Exploration of the role of leadership in setting up and maintaining each arrangement.
  2. Exploring aspects of home which includes issues such as security of tenure and how home reflects the person’s likes and dislikes.
  3. Providing the arrangement for one person at a time – no congregation of people with disabilities.
  4. How people in the arrangement plan, especially longer term planning to take into account changes that may occur.
  5. How the person and those close to the person control the person’s life and aspects of the arrangement.
  6. The kind of supports provided for the person, including both paid and informal support.
  7. The extent to which the person is thriving in the arrangement.
  8. How the person is experiencing social inclusion through relationships and social participation.

The adults in the Project with intellectual and developmental disabilities are a diverse group. About half of the people are female. They range in age from 18 to over 60 years. Length of time in the arrangements varies from less than a year to over 20 years. Almost a quarter of participants have high support needs. We have identified 5 types of ISL arrangements, each of which has more than one form: living with a co-resident (often the case with younger people), living in an intimate relationship, sharing a home, living with a host family, and living alone. Support is provided in many ways including formal, paid support, informal unpaid support, live-in and visiting support, and with the involvement of Microboards or circles of support. There are some key issues around the tenure of the person’s home. Tenure ranges from ownership, shared ownership, private rental, housing association/social housing, and family-provided home. We found strong evidence of the effectiveness of partnerships between formal and informal support.

 

We are currently planning the next stage of this research. This will shift the focus from ISL arrangements to people with disabilities who are living with their families or who live in group homes. Our aim is to use education and training based on our research so far and the ISL tool to encourage families and NGOs to explore the possibilities of individual supported living. We have some publications describing aspects of the ISL project and you are welcome to contact me if you would like information about these or other aspects of the Project.

 

In conclusion, individual supported living is clearly a positive way for people for adults with disabilities to be enabled to live good lives in their own homes. We believe this is a crucial direction to follow for reform of disability policies and practices. It is consistent with UN and other conventions and stated policies. Most importantly, it promotes the social inclusion and participation of adults with disabilities, contributes to a “good life”, and reflects a decent society.

Errol CocksErrol Cocks, MPsych PhD is a Research Professor at the School of Occupational Therapy & Social Work in Curtin University, Perth, Western Australia. He has worked in the disability sector since 1970.

Email – e.cocks@curtin.edu.au

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