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LEARNING DISABILITY and AUTISM NEEDS ASSESSMENT Report Prepared for West Lothian Community Health Care Partnership

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LEARNING DISABILITY and AUTISM NEEDS ASSESSMENT Report Prepared for West Lothian Community Health Care Partnership 20120105 LEARNING DISABILITY AND AUTISM NEEDS ASSESSMENT Report prepared for West Lothian Community Health Care Partnership Figure 8 Consultancy Services Ltd Figure 8 Consultancy Services Ltd First Floor First Floor 30 Whitehall Street 30 Whitehall Street Dundee Dundee DD1 4AF DD1 4AF 01382 224846 01382 224846 [email protected] EVIDENCE INTO PRACTICE [email protected] www.figure8consultancy.co.uk www.f8c.co.uk LEAD CONTACT Andy Perkins Managing Director (Figure 8 Consultancy Services Ltd.) First Floor, 30 Whitehall Street, Dundee. DD1 4AF. 01382 224846 (office) – 07949 775026 (mobile) [email protected] www.f8c.co.uk RESEARCH TEAM Andy Perkins (Managing Director) Patricia Hunter (Associate Researcher / Consultant) Allan Johnston (Associate Researcher / Consultant) Simon Little (Associate Researcher / Consultant) David McCue (Associate Researcher / Consultant) Donna Nicholas (Senior Researcher) Kevin Gardiner (Research Assistant) Petro Turton (Research Assistant) West Lothian Learning disability and Autism Needs Assessment Page ii of xiv TABLE OF CONTENTS CHAPTER 1: INTRODUCTION ..................................................................................................................... 1 1.1 Introduction and background ................................................................................................................................. 1 1.2 Definitions and concepts ........................................................................................................................................... 1 1.2.1 Learning disability (disabilities) ................................................................................................................. 1 1.2.2 Learning difficulties ........................................................................................................................................ 3 1.2.3 Autism and Asperger’s Syndrome ............................................................................................................ 3 1.2.4 Health Inequalities and the Social Determinants of Health ........................................................... 6 1.2.5 Wellbeing ........................................................................................................................................................... 6 1.3 Risks and resilience ‐ factors impacting the mental health and wellbeing of those with learning disabilities and/or autism ................................................................................................................................................. 8 1.4 Purpose .......................................................................................................................................................................... 10 1.5 Objectives ..................................................................................................................................................................... 10 1.6 Scope .............................................................................................................................................................................. 10 1.7 Data Sources ............................................................................................................................................................... 12 1.8 The Health Needs Assessment Process ............................................................................................................ 12 1.9 Summary of Study Methods ................................................................................................................................. 13 1.10 Terminology .............................................................................................................................................................. 15 1.11 Considerations and limitations .......................................................................................................................... 15 CHAPTER 2: LITERATURE REVIEW ........................................................................................................... 17 2.1 Introduction ................................................................................................................................................................. 17 2.2 Considerations and limitations ............................................................................................................................ 17 2.3 Method of data collection ..................................................................................................................................... 17 2.4 Data sources ................................................................................................................................................................ 17 2.5 Definitions .................................................................................................................................................................... 18 2.6 Policy context .............................................................................................................................................................. 18 2.7 Self-directed Support .............................................................................................................................................. 19 2.7.1 Social Care (Self-directed Support) Scotland Act 2013 (SDS) .................................................... 20 2.7.2 Self-directed Support - outcomes for people with a Learning Disability .............................. 20 2.7.3 Direct Payment value per client group (aged 18-64) .................................................................... 21 2.7.4 SDS value per client group (aged 65+) ............................................................................................... 21 2.8 Health needs and inequalities .............................................................................................................................. 21 2.9 Accidents and injuries .............................................................................................................................................. 23 West Lothian Learning disability and Autism Needs Assessment Page iii of xiv 2.10 Harm and neglect ................................................................................................................................................... 24 2.11 Mental health and challenging behaviour .................................................................................................... 24 2.12 Transport .................................................................................................................................................................... 25 2.13 Employment .............................................................................................................................................................. 26 2.14 Housing ....................................................................................................................................................................... 27 2.15 Transition .................................................................................................................................................................... 27 2.16 Local Area Coordinators ....................................................................................................................................... 29 2.17 Families and carers ................................................................................................................................................. 29 2.18 Parents with a learning disability ...................................................................................................................... 30 2.19 Advocacy .................................................................................................................................................................... 31 2.20 Summary .................................................................................................................................................................... 31 CHAPTER 3: EPIDEMIOLOGY ................................................................................................................... 35 3.1 Introduction and Aims ............................................................................................................................................. 35 3.2 Data Collection ........................................................................................................................................................... 35 3.2.1 Method of data collection ........................................................................................................................ 35 3.2.2 Data sources ................................................................................................................................................... 35 3.2.3 Data issues ...................................................................................................................................................... 36 3.3 Demography of West Lothian .............................................................................................................................. 37 3.3.1 Area Profile ..................................................................................................................................................... 37 3.3.2 Population: Sex ............................................................................................................................................
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