Shaping the Future of Intellectual Disability Nursing in Ireland Supporting people with an intellectual disability to live ordinary lives in ordinary places Shaping the Future of Intellectual Disability Nursing in Ireland ISBN Number 978-1-78602-036-9 Shaping the Future of Intellectual Disability Nursing in Ireland Shaping the Future of Intellectual Disability Nursing in Ireland Supporting people with an intellectual disability to live ordinary lives in ordinary places Shaping the Future of Intellectual Disability Nursing in Ireland Shaping the Future of Intellectual Disability Nursing in Ireland January 2018 Citation: McCarron, M., Sheerin, F., Roche, L., Ryan, AM., Griffiths, C., Keenan, P., Doody, O., D'Eath, M., Burke, E., McCallion, P. (2018) Shaping the Future of Intellectual Disability Nursing in Ireland. Health Services Executive, Ireland Foreword Shaping the Future of Intellectual Disability Nursing in Ireland Foreword It is with great pleasure that we present this document “Shaping the Future of Intellectual Disability Nursing in Ireland” which sets out a clear direction for the future role of intellectual disability nursing in delivering on a key priority for the HSE; ensuring the best possible health and social care is delivered to individuals with an intellectual disability. Recent studies have shown, people with an Intellectual Disability are living longer and for some they develop complex health issues earlier in life than the general population. We must also bear in mind children, born with an intellectual disability are surviving into adulthood and old age. These adults and older people experience a range of physical and psychological health and social care complexities, highlighting the critical need for highly skilled intellectual disability nursing care across their lifespan. To achieve safe, high quality, modernised health and social care within community based services, a core ingredient is the availability of competent and skilled registered nurses in the field of Intellectual Disability supporting individuals with a disability achieve and maintain optimum health and well being. This document provides a road map of what we have learned from participants and experts involved in this specialist field to guide the delivery and development of Intellectual Disability nursing in the future. Intellectual Disability nurses must have the capacity to adapt, modify and accordingly adjust to the changing environment for Disability services. They must plan for the future to adapt and deliver a more holistic model of service that includes both health and social care. Alongside the very significant current and emerging challenges for these nurses, we believe it is very timely we are taking forward this plan to ensure the academic teaching, managerial and operational supports for intellectual disability nursing are the best they can be. The RNID holds an unparalleled qualification, skills and competencies that support individuals with an intellectual disability. The RNID is required to continuously modify their role, ways of working and practice to support evolving models of service and changes in service structure. The vision this document sets out, and its ultimate aim is to set a clear direction for intellectual disability nurses, one that is sustainable and has person-centredness, safety and inclusion at its heart. By doing this we can and will achieve even higher levels of excellence in the delivery of intellectual disability nursing. We recommend the operationalisation of its recommendations via a joint implementation group. This future plan for intellectual disability nursing has been influenced by many and we would like to express our sincere thanks to all involved. Specific appreciation is extended to Professor Mary McCarron and her team in Trinity College Dublin for their partnership working with the project steering group to undertake this work. Thanks also to all participants who provided the information and expertise to inform the report; individuals with an intellectual disability, their families, staff of all levels and grades throughout disability services, representative groups and national and international experts in the field. Thanks are also extended to each individual member of the steering group and to Liz Roche and Anne Marie Ryan for the leadership and coordination they have provided in developing this document. Mary Wynne Pat Healy Interim Nursing and Midwifery Services Director National Director; Community, Strategy and Planning, HSE HSE I Contents Shaping the Future of Intellectual Disability Nursing in Ireland Foreword I Table of Contents II List of Tables IV List of Figures IV List of Abbreviations V Glossary of Terms VI Key to Participant Quote Codes used in Findings Chapter VI Vision for Registered Nurses in Intellectual Disability VII Executive Summary 1 Introduction 1 Design and Sample 1 Framing the Report 3 Theme 1: Person-Centredness and Person-centred Planning 3 Theme 2: Supporting Individuals with an Intellectual Disability with their Health, 4 Well-being and Social Care. Theme 3: Developing Nursing Capacity, Capability and Professional Leadership 8 Theme 4: Improving the Experience & Outcomes for Persons with an Intellectual 12 Disability and their Families Conclusion 16 Chapter 1. Introduction 19 1.1 Prologue 21 1.2 Project Aim 21 1.3 Project Objectives 21 1.4 Background 21 1.5 Project Steering Group 22 Chapter 2. Literature 23 2.1 Introduction 25 2.2 History of Intellectual Disability Nursing 25 2.3 Definitions and Classification of Intellectual Disability 25 2.4 Changing National Policy and Service Delivery Context 26 2.5 The Demographics of Intellectual Disability in Ireland 31 2.6 Transitions 32 2.7 Illnesses and Conditions that Compromise Independent Living 33 2.8 Health Management and Health Promotion across the Lifespan 37 2.9 Working with Families and Caring at Home 39 2.10 Role in Training 40 2.11 Increasing Specialisation amid Changing Needs: Yet Offering Holistic Care 40 2.12 Conclusion 41 II Contents Shaping the Future of Intellectual Disability Nursing in Ireland Chapter 3. Methodology 43 3.1 Project Aim 45 3.2 Project Design 45 3.3 Data Collection Approaches 45 3.4 Overall Analysis Approach 49 3.5 Ethics 50 3.6 Conclusion 50 Chapter 4. Demographics 51 4.1 Participant Profiles 53 4.2 Survey Sample 53 4.3 Profiles of the Qualitative Data Source Participants 57 4.4 Summary 58 Chapter 5. The Findings 59 5.1 Introduction 61 5.2 Person-Centredness and Person-Centred Planning 61 5.3 Supporting individuals with an intellectual disability with their health, 62 well-being and social care 5.4 Developing Nursing Capacity, Capability and Professional Leadership 68 5.5 Improving the Experience and Outcomes for Individuals with an Intellectual 73 Disability 5.6 Summary 79 Chapter 6. Discussion and Recommendations 81 6.1 Introduction 83 6.2 Person-Centredness and Person-Centred Planning 86 6.3 Supporting individuals with an intellectual disability with their health, 89 well-being and social care 6.4 Developing Nursing Capacity, Capability and Professional Leadership 96 6.5 Improving the Experience and Outcomes for Individuals with an Intellectual 105 Disability 6.6 Summary 110 Chapter 7. Conclusion 111 Conclusion 113 References 114 Appendices 128 Appendix 1: Members of the Project Steering Group, Project Team and Expert Group 128 Appendix 2: Survey Tool 130 Appendix 3: Family Focus Group Topic Guide 142 Appendix 4: Service User Focus Group Topic Guide 143 Appendix 5: RNID Focus Group Topic Guide 144 Appendix 6: Managers’ Focus Group Topic Guide 144 Appendix 7: Interface Staff Focus Group Topic Guide 145 Appendix 8: Student RNID Focus Group Topic Guide 145 Appendix 9: Educators’ Focus Group Topic Guide 146 Appendix 10: Key Informant Interview Invitation and Interview Guide 146 Appendix 11: Invitation to make a Submission 147 Appendix 12: Written Submissions Received 149 Appendix 13: Guiding Principles for Quality and Safety 150 III Contents Shaping the Future of Intellectual Disability Nursing in Ireland List of Tables Table 1 Breakdown of focus groups. 47 Table 2 Age profile of the survey participants. 53 Table 3 Divisions of the Nursing & Midwifery Board in which participants 53 were registered. Table 4 Highest level of education completed by survey participant. 54 Table 5 Current job title of survey participant. 54 Table 6 HSE Region in which participants worked. 55 Table 7 Type of service in which survey participants worked 55 Table 8 Current area of professional practice. 56 Table 9 Length of time survey participants are in current 56 area of professional practice. Table 10 Level of disability of people with whom survey participants work. 57 Table 11 Age groups of the people with intellectual disability that 57 RNIDs provide care for and support . Table 12 Areas of additional education and training for RNIDs. 62 Table 13 Important areas of practice identified by RNIDs. 63 Table 14 Frequency of RNID professional activities. 63 Table 15 Priority areas of provision over the next 5 years identified by RNIDs. 63 Table 16 Top key skills required to work in RNIDs' area of practice. 64 Table 17 Frequency of RNID activities associated 65 with governance and accountability. Table 18 RNIDs' understanding of strategies and policy documents. 65 Table 19 Areas of additional education and training. 69 Table 20 Frequency of RNID involvement in social inclusion activities. 77 Table 21 Top key skills required to work in RNID’s area of practice. 78 Table 22 Indicators for measurement 108 List