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.


Footnotes

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 http://www.scotland.gov.uk/Publications/2010/05/10102307/0

3. http://www.scotland.gov.uk/Publications/2012/05/6945

4. http://www.scotland.gov.uk/Publications/2011/11/01120340/10

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 http://www.jitscotland.org.uk/action-areas/commissioning/

12. Guidance on the Procurement of Care and Support Services, published by the Scottish Government and COSLA in 2010. http://www.jitscotland.org.uk/search/?m=1&start=0&q=guidance+on+the+procurement+of+care+and+support+services

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 http://www.healthcareimprovementscotland.org/previous_resources/performance_review/tackling_indifference.aspx

17. http://www.scotland.gov.uk/Publications/2008/06/25104032/0

18. NHSScotland Chief Executive's Annual Report 2011/12 http://www.scotland.gov.uk/Publications/2012/11/5027

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 http://www.scotland.gov.uk/Publications/2012/11/5027

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

24. http://www.chps.org.uk/content/default.asp?page=s619_34_1

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

26. http://www.scotland.gov.uk/Resource/0039/00391946.pdf

27. http://www.nhs24.com/

28. http://www.nhsinform.co.uk/

29. http://www.nhsinform.co.uk/Easy-Info

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 http://www.scotland.gov.uk/Publications/2012/05/7031/0

32. http://www.sign.ac.uk/pdf/sign70.pdf

33. Guidelines for meeting Audiological Needs of Adults with Learning Disabilities. NHS Scotland 2009 www.scotland.gov.uk/Resource/Doc/924/0092407.doc

34. http://www.scld.org.uk/SAYevaluation

35. http://www.healthscotland.com/uploads/documents/5809-Updated%20Tip%20Cards%20-%2031.01.08.pdf

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

39. www.bespoken.me/video/listen-to-me-edward-s-story

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

46. http://www.scotland.gov.uk/Publications/2010/09/10151751/17

47. http://www.scotland.gov.uk/Publications/2011/05/31085414/0

48. http://www.scotland.gov.uk/Publications/2011/05/31085332/0

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

58. http://www.scotland.gov.uk/Publications/2013/04/8699

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

60. http://www.scotland.gov.uk/Publications/2013/04/8699/1

61. http://www.legislation.gov.uk/asp/2001/10/contents#pt5-pb2-l1g89

62. http://www.scotland.gov.uk/Publications/2008/06/25093503/0

63. http://www.scotland.gov.uk/Topics/Built-Environment/Housing/supply-demand/deliveryframework/lhs/lhssidoc

64. http://www.scotland.gov.uk/Topics/Built-Environment/Housing/supply-demand/deliveryframework/lhs/lhsreviewcriteria

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. http://www.scld.org.uk/local-area-co-ordination/contacts-list [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 http://www.scld.org.uk/library-publications/values-practice-framework [accessed on the 31/05/13]

70. Ibid (pages 8-9)

71. http://www.siaa.org.uk/content/view/14/27/

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 http://www.scotland.gov.uk/Publications/2009/03/13143448/4

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

76. http://www.equalfutures.org.uk/index.php?option=com_content&view=article&id=78

77. http://www.enable.org.uk/services/Friends/Pages/dates-n-mates.aspx

78. Caring Together The Carers Strategy for Scotland 2010 - 2015, Scottish Government, http://www.scotland.gov.uk/Publications/2010/07/23153304/0

79. http://www.scotland.gov.uk51a82a58-2284-4797-b6c2-c88db1aa44c3

80. http://www.scotland.gov.uk/Topics/People/Young-People/gettingitright

81. http://www.scld.org.uk/sites/default/files/Good%20Practice%20Guidelines%20for%20Supporting%20Parents%20with%20Learning%20Disabilities.pdf

82. http://www.echr.coe.int/NR/rdonlyres/D5CC24A7-DC13-4318-B457- 5C9014916D7A/0/Convention_ENG.pdf

83. http://www.scotland.gov.uk/Publications/2004/10/20066/44708

84. http://www.scotland.gov.uk/Resource/Doc/347717/0115820.pdf

85. The Doran Review http://www.scotland.gov.uk/Publications/2012/11/7084/0

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

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

88. http://www.scotland.gov.uk/Resource/Doc/46922/0024040.pdf

89. http://enquire.org.uk/publications/factsheets/choosing-a-school and http://enquire.org.uk/20100622/wp-content/uploads/2010/11/placing-requests.pdf

90. http://www.skillsdevelopmentscotland.co.uk/

91. http://enquire.org.uk/20100622/wp-content/uploads/2010/11/progressing-beyond-school-after-16.pdf

92. http://www.scotland.gov.uk95c6efc4-601f-44b8-afdf-59fa160ce7f9

93. http://www.scotland.gov.uk1fd62737-b506-42ca-8189-8a1134da22c3

94. http://www.scotlandscolleges.ac.uk/Supported-Programmes/profound-and-complex-needs.html

95. http://www.scotland.gov.uk/Publications/2010/02/23093849/5

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

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98. http://www.thebreadmaker.org.uk/

99. http://www.elcap.org/

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.

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119. Emerson,1995,44

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