An Evaluation of Personalised Supports to Individuals with Disabilities and Mental Health Difficulties

The Genio Trust was established in 2010 as an Irish registered charity with funding from Atlantic Philanthropies, HSE and the Department of Health and Children. A number of grants have been awarded by Genio to service providers in order for them to support people with disabilities and mental health difficulties in a very individualised way, to move from institutions to the community or to become more independent in the community where they belong. In January 2011 they invited competitive tenders to undertake an evaluation of nominated projects and the University of Ulster were successful bidders. Work commenced in April 2011 with consultations being undertaken with stake-holder representatives, visits to participating services and the development and piloting of pro formas for gathering information. This report gives an overview of the findings from an evaluation of 23 projects that Genio grant-aided in 2010 and 2011 to facilitate personalised housing and support arrangements for persons with intellectual disabilities, mental health difficulties and physical impairments. Around 260 individuals were originally designated to participate in the projects but 18% dropped out and others declined to take part in the evaluation. However 81% of active participants in what became 20 projects were included at some point in the evaluation; n=197. The number of persons participating in each project ranged from 1 to 34 with a median of 14 persons. Within and across projects the participants varied in terms of their demographic characteristics and past living arrangements which resulted in a very heterogeneous sample. To compound matters, the projects had varied success in relocating people over the time period of the evaluation. Hence this resulted in a complex evaluation which despite the sizeable number of people studied – one of the largest samples ever recruited in Ireland - the variations among people and settings makes it difficult to draw definitive conclusions as to the impact of new living arrangements on people’s lives. Nonetheless there are emerging patterns of changes for the better and insights have been gained into how these can become more robust and of beneficial to more people in future years.The evaluation covered two groups of ‘movers’: those who moved from congregated settings to personalised arrangements (mostly people with mental health difficulties) and those who moved from congregated settings to community group homes (mostly people with intellectual disabilities). However there were a group of persons who continued to reside in congregated settings and others who continued to live with family carers. Also a group were already living in personalised arrangements at the start of the evaluation and continued to do so. The core of the evaluation is comparisons among these five groupings, on a range of domains reflecting service arrangements and quality of life, over a 20 month period. Detailed information using structured pro formas and mostly face-to-face interviews was collected at three Time points from people supported by the projects, their key-workers and, if available and willing, the relatives of the persons with disabilities or mental health difficulties. In addition the experiences of service managers and project leaders were obtained. Information was gathered on support costs, the use of community and hospital services and the social security benefits claimed. This report on the findings has been written primarily for service providers and commissioners. The more technical aspects of the research that was undertaken are available in a series of technical reports which are available on request. Our aim is to make the findings accessible and to identify the implications for future decision-making with regard to transforming and extending current accommodation and support arrangements in Ireland for persons with disabilities and enduring mental health difficulties. The main conclusions drawn from the evaluation are summarised below. Personalisation produces better outcomes than congregated care across a range of outcomesQuality of Life improvements are evident quality of life is poorest for those incongregated settingsPersonalisation can save on costs but not for everyone congregated settings were generally the most expensive.People living with families have some of the best outcomes and support can lead to better outcomes over time.Group homes do not offer personalised accommodation or support it is possible to move directly from congregated settings to personalised arrangements.Relatives initial concerns are often not borne out and can be overcome with active involvement and open communication.Personalisation slowly changes people’s lifestyle it can take at least a year to see certain changes.Personalised housing and support options are feasible to implement in Ireland across people with a variety of disabilities and mental health difficulties and with different levelsof support need.Community engagement and social relationships need intensive support - building links to the community takes time and should be seen as an essential part of the support provided.Personalised housing and support options can take different forms a range and variety of provision means individual needs can be better met.New roles for support staff that can bring greater satisfaction as well as some challenges.New arrangements take time to set up this needs to be built into planning moves tothe community.Longer-term follow-up is needed particularly to identify the sustainability of changes. The report is divided into 11 parts (see contents). Although related, they are designed to stand alone as they focus on aspects of the evaluation that may be of particular interest to a different readership. In addition a series of appendices contain further details to supplement information contained in the report. The wider implications are discussed around the key concepts underpinning the personalisation of service supports and the implications for realising these aspirations