The keys to life - Improving Quality of Life for People with Learning Disabilities

The new learning disability strategy in Scotland, following on from, and building on the principles and successes of The same as you?, the original review of service for people with a learning disability, published in 2000.


1. The same as you? learning disability policy published 2000, Scottish Executive

2. The Healthcare Quality Strategy for NHS Scotland-putting people at the heart of our NHS. Scottish Government, 2010



5. Emerson, E., Hatton, C. (2004) Estimating future need for adult social care services for people with learning disabilities in England. Centre for Disability Research, Lancaster University, Lancaster

6. NHS Health Scotland (2004) Health Needs Assessment Report. People with Learning Disabilities in Scotland. NHS Health Scotland.

7. Smiley, E. (2010) The incidence of mental ill-health in adults with intellectual disabilities. MD Thesis, University of Glasgow.

8. Report on the Future Delivery of Public Services by the Commission chaired by Dr Campbell Christie. Published on 29 June 2011.

9. Nicola Sturgeon, Scottish Parliament, 15 December 2011

10. Reshaping Care for Older People: A Programme for Change 2011-2021

11. Joint Strategic Commissioning Learning and Development Framework published by Scottish Government, NHS Scotland, COSLA and the Joint Improvement Team in 2012

12. Guidance on the Procurement of Care and Support Services, published by the Scottish Government and COSLA in 2010.

13. Modified from Dahlgren G, Whitehead M. Tackling inequalities in health: what can we learn from what has been tried? Background paper for The Kings Fund International Seminar on Tackling Health Inequalities.Ditchley Park, Oxford: King's Fund

14. NHS Health Scotland. People with Learning Disabilities in Scotland: The Health Needs Assessment Report. NHS Scotland, Glasgow. 2004.

15. Tyrer F et al. J Intellect Disabil Res. 2007;51:520-7.

16. Tackling indifference Report 2009


18. NHSScotland Chief Executive's Annual Report 2011/12

19. Robertson J., Emerson E., Gregory N., Hatto C., Turner S., Kessissoglou S., and Hallam A. (2000) Lifestyle Related Risk Factors for Poor Health in Residential Settings for People with Intellectual Disabilities. Research in development disabilities 21, 469-486

20. Melville C., Hamilton S., Miller S., Boyle S., Robinson N., Pert C., et al. (2009) Carer Knowledge and Perceptions of Healthy Lifestyles for Adults with Intellectual Disabilities. Journal of Applied Research in Intellectual Disabilities 22, 298-306.

21. Ibid

22. NHSScotland Chief Executive's Annual Report 2011/12

23. Scottish Consortium for Learning Disabilities (2011). You Can Do It! DVD, Paper Bag


25. Lawrence M., Kerr S., Darbyshire C., Middleton A., Fitzsimmons L. and Watson H. (2009 Tobacco and Alcohol Use in People who have a Learning Disability: Giving Voice to their Health Promotion Needs. The Queens Nursing Institute





30. Barr O., Gilgunn J., Kane T., Moore G. (1999) Health Screening for People with Learning Disabilities by a Community Nursing Learning Disability Service in Northern Ireland. Journal of Advanced Nursing 29, 1482-1491.

31. National Oral Health Improvement Strategy for Priority Groups. Scottish Government, May 2012


33. Guidelines for meeting Audiological Needs of Adults with Learning Disabilities. NHS Scotland 2009



36. NHS Quality Improvement Scotland, 2009

37. Brown et al. 2012; Bradbury-Jones et al. 2013

38. NHS Health Scotland 'Health Needs Assessment Report - People with Learning Disabilities in Scotland' 2004


40. Estimating Future Needs/Demand for support for adults with learning disabilities in England, Institute for Health Research, Lancaster University 2004

41. Kerr,D. Dementia in people with intellectual disabilities. Centre for Research on Families and Relationships.University of Edinburgh

42. Holland,A.J Hon,J.Hubbart,F.A., Stevens,V.F.Watson,P.(1998). Population based study of prevalence and presentation of dementia in adults with Down's syndrome. British Journal of Psychiatry.172,493-498

43. Prasher, V.P., End Stage Dementia in adults with Down's syndrome. International Journal of geriatric Psychiatry, 1995.10:p.3

44. Kerr,D., Understanding Learning Disability and Dementia. Developing Effective Interventions. Jessica Kingsley Publishers London and Philadelphia 2007

45. Regnard C, Mathews D, Gibson L, Clarke C. Difficulties in identifying distress and its causes in people with severe communication problems. International Journal of Palliative Nursing 2003;9(4)173-176




49. Summerfield C, Gill B. Social Trends 35. London: Office for National Statistics, 2005.

50. Gunaratnam Y, A briefing paper for managers and trustees. Widening Access to hospice care November 2000

51. Tuffrey-Wijne I. Living with learning disabilities, dying with cancer: thirteen personal stories. London. Jessica Kingsley 2010

52. Tuffrey-Wijne I. How to break bad news.To people with intellectual disabilities.A guide for carers and professionals. London.Jessicaa Kingsley 2013.

53. Disability Rights Commission(DRC).Equal treatment:closing the gap-A formal investigation into the physical health inequalities experienced by people with learning disabilities and/or mental health problems.London:DRC, 2006.

54. Institute for Health Research. Estimating Future Need / Demand for Support for Adults with Learning Disabilities in England. Institute for Health Research, Lancaster University,2004.

55. National End of Life Care Programme. The Route to succeed in the end of life care-achieving quality for people with learning disabilities. London :National End of Life Care Programme

56. Oswin, M. 1991. Am I Allowed to Cry? A study of bereavement amongst people who have learning difficulties. London: Human Horizons

57. Doka, 2002 Living with grief: loss in later life. Hospice Foundation of America


59. How is it going? Curtice 2006, SCLD Glasgow






65. Disability Rights Commission (2006a). Disability Discrimination Act: Provision and Use of Transport Vehicles, Statutory Code of Practice, Supplement to Part 3 Code of Practice, London: The Stationery Office

66. Ibid (p12)

67. National Local Area Co-Ordination Development Team. (2010a). Local Area Co-Ordination in Scotland: 2009-2010, Glasgow: Scottish Consortium for Learning Disability

68. [accessed on the 18/04/13]

69. National Local Area Co-Ordination Development Team. (2010b). Values into Practice: A Framework for Local Area Co-ordination in Scotland, Glasgow: Scottish Consortium for Learning Disability, available at [accessed on the 31/05/13]

70. Ibid (pages 8-9)


72. Researched and published by Lemos&Crane working with the Foundation for People with Learning Disabilities and supported by Esmée Fairbairn Foundation. © Lemos&Crane 2012

73. SCLD esay statistics 2011

74. Growing up in Scotland: Parenting and the Community Context Report, Scottish Government 2009

75. Allan, G. 2005. 'Boundaries of Friendship' in McKie, L. and Cunningham-Burley, S. (eds.) Families in Society: Boundaries and Relationships. : Policy Press.



78. Caring Together The Carers Strategy for Scotland 2010 - 2015, Scottish Government,




82. 5C9014916D7A/0/Convention_ENG.pdf



85. The Doran Review

86. Education (Additional Support for Learning) (Scotland) Act 2004

87. Education (Additional Support for Learning) (Scotland) Act 2009


89. and







96. Beyer, S (2008). An Evaluation of the Outcomes of Supported Employment in North Lanarkshire, North Lanarkshire: North Lanarkshire Council




100. Heslop, P., Blair, P., Fleming, P. et al. (2012) Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD). University of Bristol: Norah Fry Research Centre

101. Hogg, J., Juhlberg, K. & Lambe, L. (2007) Policy, service pathways and mortality: a 10-year longitudinal study of people with profound intellectual and multiple disabilities. Journal of Intellectual Disability Research, 51, 366-376.

102. Garrard, B., Lambe, L. & Hogg, J. (2010) Invasive Procedures: Minimising Risks and Maximising Rights. Improving practice in the delivery of invasive procedures for people with profound and multiple learning disabilities -Project Report and recommendations. Dundee: PAMIS & White Top Research Unit, University of Dundee.

103. Hogg, J. (2012) Delivering Invasive Procedures to People with Profound and Multiple Learning Disabilities. How service providers succeed. Dundee: PAMIS & White Top Research Unit, University of Dundee.

104. Turner, S. (2013) Improving the uptake of health checks for adults with learning disabilities: evidence into practice report no.6. Improving Health and Lives: Learning Disability Observatory

105. British Society for Disability and Oral Health & Faculty of Dental Surgery (2012) Clinical Guidelines and Integrated Pathways for the Oral Health Care of People with Learning Disabilities: Reviewed and Updated 2012. London: The Royal College of Surgeons of England

106. Scottish Government (2010) Supporting children's learning: code of practice, revised edition. Edinburgh: Scottish Government.

107. Mansell, J. (2010) Raising our sights: services for adults with profound intellectual and multiple disabilities. Tizard Centre: University of Kent.

108. Scottish Government (2012) Meeting the needs of Scotland's children and young people with complex additional support needs: the Scottish Government's response to the Doran Review. Edinburgh: Scottish Government.

109. Scottish Executive (2006) Make my day! The same as you? National Implementation Group: report of the Day Services Sub Group. Edinburgh: Scottish Executive.

110. SCLD (2011) "If I don't get a place next year, I don't know what I'll do": Joint SCLD Briefing on the impact of changes to the funding of students with learning disabilities within Scottish Further Education. SCLD: Glasgow

111. Campbell, M. & Hogg, J. (2012) A History of Significant Research on Teaching People with Profound Disabilities: Implications for Practice. An online training resource for FE staff. Scotland's Colleges, Stirling.

112. Morrison, M. (2011) New style day services in South Lanarkshire: Providing opportunities for lifelong learning and inclusion for people with PMLD. PMLD Link, 22, no. 3, 11 - 14.

113. BSI British Standards (2009) Design of buildings and their approaches to meet the needs of disabled people - Code of practice. London: BSI British Standards

114. Building Research Establishment (BRE) Scotland (2012) Changing Places Toilets. Edinburgh: Scottish Government

115. Phillip, Lambe & Hogg, 2005




119. Emerson,1995,44

120. Carr, e.g., Horner, R.H., Turnbull A.P., Marquis, J., Magito-McLaughlin, D., McAtee, M.L., Smith, C.E., Anderson-Ryan, K., Ruef, M.B. & Doolabh, A. (1999) Positive Behavioral Support for People with Developmental Disabilities: A Research Synthesis. Washington: American Association on Mental Retardation.


122. Emerson et al 2000

123. National Statistics, 2004, Chapter 8

124. Emerson & Baines, 2010





129. Perera, C., Simpson, N., Douds, F., Campbell, M., (2009) A survey of learning disability services in Scotland in 2007. Journal of Intellectual Disabilities 13:161.

130. Allen, D, Lowe, K, Brophy, S & Moore, K ( 2007 ) ; ' Predictors, costs and characteristics of out-of-area placements for people with intellectual disability and challenging behaviour'. Journal of Intellectual Disability Research 51(6) 409-16

131. Brown, M and Paterson, D ( 2008 ) ; ' Out-of-area placements in Scotland and people with learning disabilities : a preliminary population study'. Journal of Psychiatric and Mental Health Nursing, 2008, 15, 278-286

132. Allen, D ( 2008 ) ; 'Failing to plan is planning to fail : out-of-area placements for people with learning disabilities'. Advances in Mental Health and Learning Disabilities, Vol 2 Issue 3, September 2008


134. McGill, P & Poynter, J, ( 2011 ) ; ' How much will it cost ? Characteristics of the most expensive residential placements for adults with learning disabilities ' Tizard Learning Disability Review, Vol 16, Issue 2, 54-57

135. Pring, J (2003) ; 'Silent Victims: The Longcare Scandal and Britain's Continuing Failure to Protect Society's Most Vulnerable'. London: Gibson Square Books.

136. Department of Health, ( 2012 ) ; ' Department of Health Review ; Winterbourne View Hospital

137. NHS Education for Scotland (2012) ; 'The Psychological Therapies Matrix'

138. The Scottish Government ( 2012 ) ; 'Strengthening the commitment: The report of the UK Modernising Learning Disabilities Nursing Review'

139. NHS Scotland SEAT Region ( 2012 ) ; ' The Full Spectrum of Care for People with a Learning Disability who have Complex Care Needs'


141. Getting it Right? Human Rights in Scotland published October 2012, Scottish Human Rights Commission

142. Allan, L, Brown, J, Brown, M and Stevenson T (2012). The same as you? Evidence Scoping Exercise Health Report, Glasgow: Scottish Consortium for Learning Disability, Scottish Government


Email: Julie Crawford

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