Disability and Mental Health in Ireland Searching out good practice 1473_GEN_Report_AW_70410.indd 1 09/04/2010 09:43:22 Our Mission Genio’s mission is to accelerate the availability of proven, cost-effective, personalised supports and information, enabling people with disabilities and mental health difficulties at risk of social exclusion to lead full lives. GENIO works to 1 Identify and promote good examples of cost-effective, personalised supports for people with disabilities and mental health difficulties 2 Provide the evidence required to accelerate the availability of these supports 3 Support the development of strategic self-advocacy 4 Facilitate and capacity-build cross-sector collaboration between key stakeholders (individuals at risk of social exclusion, statutory agencies, NGOs and private/philanthropic organisations) 5 Provide practical support in the form of expertise and funding 6 Offer independent research and evaluation GENIO is a non-profit organisation rooted in the belief that by valuing diversity both the individual and society can benefit from the unique contribution of all citizens. www.genio.ie Please note: As this research project was conducted GENIO was formerly known as The by Fiona Keogh on behalf of The Person Person Centre. It changed its name to Centre, September 2008 to March 2009, GENIO as of April 2010. all references to the organisation within this report refer to The Person Centre. Copyright © 2009 The Person Centre ISBN 978-1-907711-00-8 Paperback GENIO (The Person Centre) 978-1-907711-01-5 PDF Marlinstown Office Park, Mullingar, Co. Westmeath. 1473_GEN_Report_AW_70410.indd 2 09/04/2010 09:43:23 DISABILITY AND MENTAL HEALTH IN IRELAND SEARCHING OUT GOOD PRACTICE GENIO Acknowledgements Many individuals and organisations were consulted over a period from 2006 to 2009 and took time to respond to requests for information, providing valuable comment and input, which informed the preparation of this report. These included people with disabilities and mental health difficulties, representative organisations, statutory agencies, non-governmental organisations (including advocacy groups and providers’ federations), researchers and leaders of demonstration projects. Their contribution is gratefully acknowledged. A list of main contributors is in Appendix A. This research was supported by the Atlantic Philanthropies. page 3 | Table of Contents Acknowledgements................................................................................................................................................Error! Bookmark not defined........... 3 Table of Contents....................................................................................................... 4 List of tables and figures ............................................................................................ 5 Executive Summary ................................................................................................... 6 1. Background............................................................................................................ 8 1.1 Developing a strategy to improve services ....................................................... 8 1.2 Objectives of the research ................................................................................ 9 1.3 Policy and legislative context ............................................................................ 9 1.4 Terminology .................................................................................................... 12 2. Refining criteria to identify person-centred cost-effective projects ....................... 17 2.1 Methodology ................................................................................................... 18 2.2 Criteria to identify person-centred cost-effective projects ............................... 19 3. Identifying demonstration projects........................................................................ 24 3.1 Methodology ................................................................................................... 24 3.2 Results............................................................................................................ 28 3.3 Examples of how projects are meeting the criteria.......................................... 37 3.4 Challenges and barriers.................................................................................. 48 3.5 Critical success factors ................................................................................... 51 3.6 Conditions likely to facilitate person-centred work .......................................... 53 3.7 Factors that hinder the spread of person-centred work................................... 54 4.International models.............................................................................................. 55 4.1 Employment ................................................................................................ 55 4.2 Inclusion and integration ............................................................................. 61 4.3 Housing....................................................................................................... 65 4.4 Funding individualised services and supports............................................. 70 5. Conclusion......................................................................................................... 82 | page 4 Appendix A List of main contributors ....................................................................... 84 Appendix B Information to be collected on site visits ............................................... 88 Appendix C Assessment form.................................................................................. 90 Appendix D Summary description of 21 projects ...................................................106 105 List of tables and figures Table 1: Summary domain ratings for 21 demonstration projects 33 Table 2: Ratings on each criterion for each project 35 Table 3: From Mansell et al. (2007) 80 Figure 1: Representation of disability sectors in demonstration projects 29 Figure 2: Map showing location of demonstration projects 30 Figure 3: Categories of providers of demonstration projects 31 Figure 4: Illustrative scores for the projects 36 page 5 | Executive Summary There is a significant challenge facing the way in which services are provided to people with disabilities and mental health difficulties. The research evidence indicates that services and supports that encourage self-determination and provide opportunities for inclusion and participation, not only achieve good outcomes for the individual, but do this cost-effectively. National policy statements indicate that person-centred services that encourage inclusion should be available to people with disabilities and mental health difficulties. Most importantly, however, people with disabilities and mental health difficulties themselves have indicated very clearly that they want supports (and services when necessary) that do this in a real way. They want support to live in their own homes; to work in real jobs; and to be active, contributing citizens. In spite of the research evidence, the policy statements and the desire of service users, many of the services for people with disabilities and mental health difficulties in Ireland do not work in this way. Many services still segregate people with disabilities and mental health difficulties, provide services to them in groups and work in a way that maintains this separateness. Many services do not encourage or enable the person to be self-determining or to participate in society in a meaningful way, on their own terms. This gap between what people with disabilities want and what is provided is captured in the words ‘Thank you for everything that you’ve done ... for all the services that there are ... But what you have built, we don’t want.’1 The research reported here is part of a strategy designed to address this gap between the supports desired by people with disabilities and mental health difficulties and those currently provided in some parts of the country. This strategy aims to identify, develop and extend good practice, supported by advocacy and research, in order that they can be offered to more people with disabilities and mental health difficulties. 1 Rebecca Coakley, National Consortium on Leadership and Disability. Taken from Agosta, J. (2009) Thinking through a next generation of services for people with intellectual and other disabilities. NDA Conference, October 2009. | page 6 A number of services and initiatives for people with disabilities and mental health difficulties were identified in Ireland as pockets of ‘good practice’ in terms of being person-centred, encouraging self-determination and operating in a sustainable, cost- effective way. Twenty three such ‘projects’ were identified. Some of these are projects within larger organisations, others represent whole organisations. On the basis of wide-ranging consultation, a set of criteria was developed and used to assess these projects to determine, in a systematic way, the extent to which their practice was person-centred and cost-effective. Twenty-one projects participated in the assessment process. Examples of relevant practice were also identified from the international literature. These findings are being used to inform the way in which person-centred sustainable supports and services can be evaluated, supported and extended to those who could benefit. page 7 | Quality cost-effective