Thursday, June 30, 2011

Congregated Settings Report on the Transition to Community Living for People with Disabilities

by Eilionoir Flynn

The long awaited report “Time to Move on from Congregated Settings: A Strategy for Community Inclusion” has been published by the HSE this week. While some of the key findings of the report had been in the public domain since last summer (see here and here) and were recently highlighted on the Prime Time special documentary on people with intellectual disabilities in residential services, it is worth examining the findings as a whole here to determine what steps now need to be taken by the Minister for Disability and Mental Health, the HSE, and disability service providers.

The report represents a significant milestone in advancing the deinstitutionalisation agenda in Ireland, with its core recommendation being that all 4,000 individuals living in settings of 10 or more people with disabilities should be moved into the community, and the institutional settings in which they live should be closed. This is an important stance, as it had been argued for many years that people with disabilities or their family members might ‘choose’ to live in an institutional setting, since it could provide more security or more intensive care, and for some people who have lived in institutional settings for their entire lives, this might be the only place they call ‘home.’

The report addresses these concerns with its recommendation that all those moving from congregated settings should be provided with dispersed housing (scattered throughout residential neighbourhoods among the rest of the population), but that people can choose one of the four following options:

  • Living alone
  • Sharing with others who do not have a disability
  • Sharing their home with other people with a disability
  • Living with their own family or a long-term placement with another family

The key research findings of the report can be summarised as follows:

  • Community living offers the prospect of an improved lifestyle and quality of life over institutional care for people with intellectual disabilities
  • This applies to old and new institutions, whatever they are called
  • Community living is no more expensive than institutional care once the comparison is made on the basis of comparable needs and comparable quality of care
  • Successful community living requires close attention to the way services are set up and run, especially the quality of staff support.

Importantly, the report includes the stories of people with disabilities (including many with high support needs) who have already successfully made the transition to living in the community. One of the participants, Nuala, states:

My dream was to have my own place and I got it. I got my own apartment in July 07. It was the best thing that has happened to me. My dream has come true. That year I used to go there for a few hours every day. I had support to prepare my own meals and to do shopping and anything else I wanted. I knew I didn’t want to share with anyone and I didn’t want staff telling me what to do. I also didn’t want to have to ask to go out. I like living on my own and having my own private space.

Nuala’s experience demonstrates how the mundane aspects of daily living are often denied to people with disabilities – and how vital these can be to recognition as an equal citizen and contribute to participation in the community.

Although many other countries commenced the process of deinstitutionalising people with disabilities and moving towards community living much earlier than Ireland (e.g. in the US and Canada, deinstitutionalisation began in earnest the 1970s), these processes were subject to significant barriers, including the creation of ‘group homes’ which effectively became ‘mini-institutions’ in the community. This report outlines how Ireland can learn from the experiences of other countries (including England, Wales, Sweden, the US and Norway) in moving people with disabilities from institutionalised settings to live in the community.

As outlined by Charles O’Mahony in his blog about the report last July, the term ‘congregated settings’ is defined in the report as settings where ten or more people with disabilities were living. However, many would argue that if even one person is living in a setting which they did not choose and have no realistic possibility of leaving, then this too should be considered an institution. This resonates with the concept of ‘hidden homelessness’ in disability, which refers to people with disabilities living in places which they have not chosen, who would, if they moved from these inappropriate settings, be deemed homeless. In addition, the definition of congregated setting used in the report excludes situations such as younger people with disabilities inappropriately placed in nursing homes for the elderly, and people living at home with families who would prefer to move out into independent or supported accommodation arrangements.

The report acknowledges that a wholly new approach to funding disability services will be required to facilitate the transition to community living. Under the National Disability Strategy launched in 2004, a Multi-Annual Investment Programme of €900million was previously spent on very traditional residential services for people with disabilities, rather than allocated to services which were committed to move towards community living. In the current economic climate, it may be more difficult to find the resources to finance this transition; however, Kathleen Lynch, Minister of State for Disability, Equality, Mental Health and Older People, has committed to finding the funding to ensure residential services for people with disabilities were independently inspected. On the recent Prime Time programme, she stated: “It is simply putting … the funding and the additional resources in place in order that it can be done. I don’t think that will take very long.”

Discussions about funding for community living will also benefit from the forthcoming publication of the Department of Health’s Value for Money and Policy Review of Disability Services, which is expected this autumn. Some findings from the initial consultation on this review indicate as follows:

In general, the traditional focus on people with disabilities has been on their deficits and addressing those deficits through the provision of groupbased services which segregated people with disabilities from the general community. This separated people from their communities and the natural supports that are inherent in that community. The provision of services in this way tends to reinforce social exclusion and does not enable individuals to exercise choice and control over their lives.

A move to supports will focus on the wider needs of the person and the contributions they can make. A system of individually tailored supports ensures the person with a disability gets the support they need to live a full life. Supports systems make appropriate use of family and community supports and mainstream services, resulting in a more cost-effective system.

The rhetoric of the importance of choice, control, and life in the community which is referred to throughout the Congregated Settings Report will also have to be supplemented by practical measures to ensure that people with disabilities are valued and given an opportunity to participate in the communities in which they live. One particular issue, as identified in the UK’s consultation on its learning disability strategy, Valuing People Now, is emerging evidence of hate crime against people with intellectual disabilities who have moved from residential care into community settings, leading to the phenomenon of ‘re-institutionalisation’ where people prefer to return to congregated settings where they feel safe, rather than risk living in a community where they feel unwelcome.

In short, the publication of this report is to be welcomed, and in particular, its specific recommendations to the Department of Health and the HSE, which require the publication of a vision and policy statement on the closure of all congregated settings, and an implementation plan to achieve this within the next seven years. If the findings of this report are reinforced in the publication of the forthcoming report on Value for Money and Policy Review of Disability Services, there is hope that life will really begin to change for some of the most marginalised people with disabilities in Ireland.