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Barriers to Health Care Services and the Role of the Physician

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Physical Health of Adults with Intellectual and Developmental Disabilities

Abstract

People with intellectual disability experience poorer health compared to the general population and have a significantly decreased life expectancy. Whilst some of the differences can be explained by the etiology of an individual’s disability and its associated comorbidities, there are also significant differences in health status resulting from poor quality healthcare. In other words, health inequalities. This chapter addresses the barriers to the delivery of health care to people with intellectual disability through an analysis of five issues: accessibility, mobility and sensory impairment; behavioral problems; communication; knowledge, attitudes and accessing specialist services; and time and resources. The chapter also explores some of the ways that barriers can be overcome by health care providers through the use of reasonable adjustments.

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References

  1. Emerson E, Baines S, Allerton L, Welch V. Health inequalities and people with learning disabilities in the UK: 2012. Durham: Improving Health & Lives: Learning Disabilities Observatory; 2012.

    Google Scholar 

  2. Cooper S-A, Smiley E, Morrison J, Williamson A, Allan L. Mental ill-health in adults with intellectual disabilities: prevalence and associated factors. Br J Psychiatry. 2007;190:27–35.

    Article  Google Scholar 

  3. Haveman M, Heller T, Lee L, Maaskant M, Shooshtari S, Strydom A. Major health risks in aging persons with intellectual disabilities: an overview of recent studies. J Policy Pract Intellect Disabil. 2010;7:59–69.

    Article  Google Scholar 

  4. McCarron M, Swinburne J, Burke E, McGlinchey E, Mulryan N, Andrews V, Foran S, McCallion P. Growing older with an intellectual disabilities in Ireland in 2011: first results from the intellectual disability supplement of The Irish Longitudinal Study on Ageing. Dublin: School of Nursing and Midwifery, Trinity College Dublin; 2011.

    Google Scholar 

  5. Moseley D, Tonge B, Bereton A, Einfeld A. Psychiatric comorbidity in adolescents and young adults with autism. J Ment Health Res Intellect Disabil. 2011;4:229–43.

    Article  Google Scholar 

  6. Emerson E, Baines S. Health inequalities and people with learning disabilities in the UK: 2010. Durham: Improving Health & Lives: Learning Disabilities Observatory; 2010.

    Google Scholar 

  7. Holly D, Sharp J. Addressing health inequities: coronary heart disease training within learning disabilities services. Br J Learn Disabil. 2014;42:110–6.

    Article  Google Scholar 

  8. Townsend C. Developing a comprehensive research agenda for people with intellectual disabilities to inform policy development and reform. J Policy Pract Intellect Disabil. 2011;8:113–24.

    Article  Google Scholar 

  9. MENCAP. Death by indifference. London: MENCAP; 2007.

    Google Scholar 

  10. Heslop P, Blair P, Fleming P, Hoghton M, Marriott A, Russ L. Confidential inquiry into premature deaths of people with learning disabilities (CIPOLD): final report. Bristol: Norah Fry Research Centre; 2013.

    Google Scholar 

  11. Baxter H, Lowe K, Houston H, Jones G, Felce D, Kerr M. Previously unidentified morbidity in patients with intellectual disability. Br J Gen Pract. 2006;56:93–8.

    PubMed  PubMed Central  Google Scholar 

  12. Beange H, Bauman A. Caring for the developmentally disabled in the community. Aust Fam Physician. 1990;19:1558–63.

    Google Scholar 

  13. Howells G. Are the medical needs of mentally handicapped adults being met. J R Coll Gen Pract. 1986;36:449–53.

    CAS  PubMed  PubMed Central  Google Scholar 

  14. Webb O, Rogers L. Health Screening for people with intellectual disability: The New Zealand experience. J Intellect Disabil Res. 1999;43:497–503.

    Article  Google Scholar 

  15. Wilson DN, Haire A. Health care screening for people with mental handicap living in the community. Br Med J. 1990;301:1379–81.

    Article  CAS  Google Scholar 

  16. Beange H, McElduff A, Baker W. Medical disorders of adults with mental retardation: a population study. Am J Ment Retard. 1995;99:595–604.

    CAS  PubMed  Google Scholar 

  17. Kerr MP, Richards D, Glover G. Primary care for people with a learning disability – a Group Practice survey. J Appl Res Intellect Disabil. 1996;9:347–52.

    Article  Google Scholar 

  18. NHS Digital. Health and care of people with learning disabilities: experimental statistics, 2014–15 report; 2016. Available at: www.digital.nhs.uk/pubs/LD1415. Accessed 26 Jan 2018.

  19. Whitfield M, Langan J, Russell O. Assessing general practitioners’ care of adult patients with learning disability: case-control study. Qual Health Care. 1996;5:31–5.

    Article  CAS  Google Scholar 

  20. Michael J. Healthcare for all. Report of the independent inquiry into access to healthcare for people with learning disabilities. London: Department of Health; 2008.

    Google Scholar 

  21. Ward RL, Nichols AD, Freedman RI. Uncovering health care inequalities among adults with intellectual and developmental disabilities. Health Soc Work. 2010;35:280–90.

    Article  Google Scholar 

  22. Beange H. Caring for a vulnerable population. Med J Aust. 1996;164:159–60.

    CAS  PubMed  Google Scholar 

  23. Department for Work and Pensions. Fulfilling potential – outcomes and indicators framework: second annual progress report. London: Stationary Office; 2015.

    Google Scholar 

  24. Piachaud J. Strengths and difficulties in developing countries: the case of Zimbabwe. In: Bouras N, editor. Mental health in mental retardation: recent advances and practices. Cambridge: Cambridge University Press; 1994. p. 383–92.

    Google Scholar 

  25. Sonnander K, Claesson M. Classification, prevalence, prevention and rehabilitation of intellectual disabilities: an overview of research in the People’s Republic of China. J Intellect Disabil Res. 1997;41:180–92.

    Article  Google Scholar 

  26. Chambers R, Milsom G, Evans N, Lucking A, Campbell I. The primary care workload and prescribing costs associated with patients with learning disabilitiy discharged from long-stay care to the community. Br J Learn Disabil. 1998;26:9–12.

    Article  Google Scholar 

  27. Minihan PM, Dean DH, Lyons CM. Managing the care of patients with mental retardation: a survey of physicians. Ment Retard. 1993;31:239–46.

    CAS  PubMed  Google Scholar 

  28. Healthwatch England. Primary care: a review of local health watch reports; 2015. Available at: https://www.healthwatch.co.uk/resource/primary-care-review-local-healthwatch-reports. Accessed 26 Jan 2018.

  29. Evenhuis H. Medical aspects of ageing in a population with intellectual disability: mobility, internal conditions and cancer. J Intellect Disabil Res. 1997;41:8–18.

    Article  Google Scholar 

  30. Evenhuis H. Medical aspects of ageing in a population with intellectual disability: I. Visual impairment. J Intellect Disabil Res. 1995;39:19–25.

    Article  Google Scholar 

  31. Evenhuis H. Medical aspects of ageing in a population with intellectual disability: II. Hearing impairment. J Intellect Disabil Res. 1995;39:27–33.

    Article  Google Scholar 

  32. Emerson E. Challenging behaviour: analysis and intervention in people with severe intellectual disabilities. Cambridge: Cambridge University Press; 1995.

    Google Scholar 

  33. Minihan PM, Dean DH. Meeting the needs for health services of persons with mental retardation living in the community. Am J Public Health. 1990;80:1043–8.

    Article  CAS  Google Scholar 

  34. Moss S, Emerson E, Kiernan C, Turner S, Hatton C, Alborz A. Psychiatric symptoms in adults with learning disability and challenging behaviour. Br J Psychiatry. 2000;177:452–6.

    Article  CAS  Google Scholar 

  35. Moss SC. Age and functional abilities of people with a mental handicap: evidence for the Wessex Mental Handicap Register. J Ment Defic Res. 1991;35:430–45.

    PubMed  Google Scholar 

  36. Davidson PW, Houser KD, Cain NN, Sloane-Reeves J, Quijano L, Matons L, Giesow V, Ladringan PM. Characteristics of older adults with intellectual disabilities referred for crisis intervention. J Intellect Disabil Res. 1999;43:38–46.

    Article  Google Scholar 

  37. Day KA. The elderly mentally handicapped in hospital: a clinical study. J Ment Defic Res. 1987;31:131–46.

    Google Scholar 

  38. Aylward EH, Burt DB, Thorpe LU, Lai F, Dalton A. Diagnosis of dementia in individuals with intellectual disabilities. J Intellect Disabil Res. 1997;41:152–64.

    Article  Google Scholar 

  39. Paul A. Epilepsy or stereotypy? Diagnostic issues in learning disabilities. Seizure. 1997;6:111–20.

    Article  CAS  Google Scholar 

  40. Lennox NG, Diggens JN, Ugoni AM. The general practice care of people with intellectual disability: barriers and solutions. J Intellect Disabil Res. 1997;41:380–90.

    Article  Google Scholar 

  41. Kerr MP. Primary health care and health gain for people with a learning disability. Tizard Learn Disabil Rev. 1998;3:6–14.

    Article  Google Scholar 

  42. Kerr AM, McCulloch D, Oliver K, McLean B, Coleman E, Law T. Medical needs of people with intellectual disability require regular reassessment, and the provision of client- and carer-held reports. J Intellect Disabil Res. 2003;47:134–45.

    Article  CAS  Google Scholar 

  43. March P. How do people with a mild/moderate mental handicap conceptualise physical illness and its cause? Brit J Ment Subnorm. 1991;37:80–91.

    Article  Google Scholar 

  44. Gilbert-McLeod CA, Craig KD, Rocha EM, Mathias MD. Everyday pain responses in children with and without developmental delays. J Pediatr Psychol. 2000;25:301–8.

    Article  Google Scholar 

  45. Bromley J, Emerson E, Caine A. The development of a self-report measure to assess the location and intensity of pain in people with intellectual disabilities. J Intellect Disabil Res. 1998;42:72–80.

    Article  Google Scholar 

  46. Kinnell HG. Community medical care of people with mental handicaps: room for improvement. Ment Handicap Res. 1987;15:146–50.

    Article  Google Scholar 

  47. Duckworth MS, Radhakrishnan G, Nolan ME, Fraser WI. Initial encounters between people with a mild handicap and psychiatrists: an investigation of a method of evaluating interview skills. J Intellect Disabil Res. 1993;37:263–76.

    Article  Google Scholar 

  48. Ali A, Scior K, Ratti V, Strydom A, King M, Hassiotis A. Discrimination and other barriers to accessing health care: perspectives of patients with mild and moderate intellectual disability and their carers. PLoS One. 2013;8:e70855.

    Article  CAS  Google Scholar 

  49. Alborz A, McNally R, Swallow A, Glendinning C. From the cradle to the grave: a literature review of access to health care for people with learning disabilities across the lifespan. London: National Co-ordinating Centre for NHS Service Delivery and Organisation; 2003.

    Google Scholar 

  50. Lennox NG, Brolan CE, Dean J, Ware RS, Boyle FM, Taylor Gomez M, van Dooren K, Bain C. General practitioners’ views on perceived and actual gains, benefits and barriers associated with the implementation of an Australian health assessment for people with intellectual disability. J Intellect Disabil Res. 2013;57:913–22.

    Article  CAS  Google Scholar 

  51. Crocker AC, Yankauer A. Basic issues. Ment Retard. 1987;25:227–32.

    CAS  PubMed  Google Scholar 

  52. NHS Wales. How to guide 1000 Lives Plus. Improving general hospital care of patients who have a learning disabilities. Wales: NHS Wales; 2014.

    Google Scholar 

  53. Allerton L, Emerson E. British adults with chronic health conditions or impairments face significant barriers to accessing health services. Public Health. 2012;126:920–7.

    Article  CAS  Google Scholar 

  54. Davies N, Duff M. Breast cancer screening for older women with intellectual disability living in community group homes. J Intellect Disabil Res. 2001;45:253–7.

    Article  CAS  Google Scholar 

  55. Nightingale C. Barriers to health access: a study of cervical screening for women with learning disabilities. Clin Psychol Forum. 2000;137:26–30.

    Google Scholar 

  56. Bond L, Kerr M, Dunstan F, Thapar A. Attitudes of general practitioners towards health care for people with intellectual disability and the factors underlying these attitudes. J Intellect Disabil Res. 1997;41:391–400.

    Article  Google Scholar 

  57. Dovey S, Webb OJ. General practitioners’ perception of their role in care for people with intellectual disability. J Intellect Disabil Res. 2000;44:553–61.

    Article  Google Scholar 

  58. Lennox NG, Diggens J, Ugoni A. Health care for people with an intellectual disability: general practitioners’ attitudes, and provision of care. J Intellect Develop Disabil. 2000;25:127–33.

    Article  Google Scholar 

  59. Aulagnier M, Verger P, Ravaud JF, Souville M, Lussault PY, Garnier JP, Paraponaris A. General practitioners’ attitudes towards patients with disabilities: the need for training and support. Disabil Rehabil. 2005;27:1343–52.

    Article  Google Scholar 

  60. Stanley R. Primary health care provision for people with learning disabilities: a survey of general practitioners. J Learn Disabil Nurs Soc Care. 1993;2:23–30.

    Article  Google Scholar 

  61. Royal College of General Practitioners. Learning disabilities; 2018. http://www.rcgp.org.uk/learningdisabilities/. Viewed 26 Jan 2018.

  62. Tuffrey-Wijne I, Giatras N, Goulding L, Abraham E, Fenwick L. Identifying the factors affecting the implementation of strategies to promote a safer environment for patients with learning disabilities in NHS hospitals: a mixed-methods study. Health Services and Delivery Research, No. 1.13. 2013.

    Google Scholar 

  63. Gibbs SM, Brown MJ, Muir WJ. The experiences of adults with intellectual disabilities and their carers in general hospitals: a focus group study. J Intellect Disabil Res. 2008;52:1061–77.

    Article  CAS  Google Scholar 

  64. Webber R, Bowers B, Bigby C. Hospital experiences of older people with intellectual disability: responses of group home staff and family members. J Intellect Dev Disabil. 2010;35:155–64.

    Article  Google Scholar 

  65. Turner NJ, Brown AR, Baxter KF. Consent to treatment and the mentally incapacitated adult. J R Soc Med. 1999;92:290–2.

    Article  CAS  Google Scholar 

  66. Mental Capacity Act. London: The Stationery Office; 2005, c.9.

    Google Scholar 

  67. Alborz A, McNally R, Glendinning C. Access to healthcare for people with learning disabilities: mapping the issues and reviewing the evidence. J Health Serv Res Policy. 2005;10:173–82.

    Article  Google Scholar 

  68. Moss S, Patel P. The prevalence of mental illness in people with intellectual disability over 50 years of age, and the diagnostic-importance of information from carers. Ir J Psychol. 1993;4:110–29.

    Article  Google Scholar 

  69. Roy A, Martin DM, Wells MB. Health gain through screening – mental health: developing primary health care services for people with an intellectual disability. J Intellect Develop Disabil. 1997;22:227–39.

    Article  Google Scholar 

  70. Flaskerud JH, Lesser J, Dixon E, Anderson N, Conde F, Kim S. Health disparities among vulnerable populations: evolution of knowledge over five decades in Nursing Research publications. Nurs Res. 2002;51:74–85.

    Article  Google Scholar 

  71. Walsh KK, Kastner T, Criscione T. Characteristics of hospitalizations for people with developmental disabilities: utilization, costs and impact of care coordination. Am J Ment Retard. 1997;101:505–20.

    CAS  PubMed  Google Scholar 

  72. Criscione T, Kastner TA, Walsh KK, Nathanson R. Managed health care services for people with mental retardation: impact on impatient utilization. Ment Retard. 1993;31:297–306.

    CAS  PubMed  Google Scholar 

  73. Jones RG, Kerr MP. A randomised control trial of an opportunistic health screening tool in primary care for people with intellectual disability. J Intellect Disabil Res. 1997;41:409–15.

    Article  Google Scholar 

  74. Martin DM, Roy A. A comparative review of primary health care models for people with learning disabilities: towards the provision of seamless health care. Br J Learn Disabil. 1999;27:58–63.

    Article  Google Scholar 

  75. Bakker-van Gijssel EJ, Lucassen PLBJ, Olde Hartman TC, van Son L, Assendelft WJJ, van Schrojenstein Lantman-de Valk HMJ. Health assessment instruments for people with intellectual disabilities—a systematic review. Res Dev Disabil. 2017;64:12–24.

    Article  CAS  Google Scholar 

  76. Stein K. Caring for people with learning disability: a survey of general practitioners’ attitudes in Southampton and South-West Hampshire. Br J Learn Disabil. 2000;28:9–15.

    Article  Google Scholar 

  77. Glover G, Niggebrugge A. The uptake of health checks for adults with learning disabilities 2008/9 to 2012/13. London: Public Health England; 2013.

    Google Scholar 

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Slater, H., Baxter, H., Kerr, M. (2019). Barriers to Health Care Services and the Role of the Physician. In: Prasher, V., Janicki, M. (eds) Physical Health of Adults with Intellectual and Developmental Disabilities. Springer, Cham. https://doi.org/10.1007/978-3-319-90083-4_19

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  • DOI: https://doi.org/10.1007/978-3-319-90083-4_19

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