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 ............................................................................................................................................