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.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
Similar content being viewed by others
References
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.
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.
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.
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.
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.
Emerson E, Baines S. Health inequalities and people with learning disabilities in the UK: 2010. Durham: Improving Health & Lives: Learning Disabilities Observatory; 2010.
Holly D, Sharp J. Addressing health inequities: coronary heart disease training within learning disabilities services. Br J Learn Disabil. 2014;42:110–6.
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.
MENCAP. Death by indifference. London: MENCAP; 2007.
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.
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.
Beange H, Bauman A. Caring for the developmentally disabled in the community. Aust Fam Physician. 1990;19:1558–63.
Howells G. Are the medical needs of mentally handicapped adults being met. J R Coll Gen Pract. 1986;36:449–53.
Webb O, Rogers L. Health Screening for people with intellectual disability: The New Zealand experience. J Intellect Disabil Res. 1999;43:497–503.
Wilson DN, Haire A. Health care screening for people with mental handicap living in the community. Br Med J. 1990;301:1379–81.
Beange H, McElduff A, Baker W. Medical disorders of adults with mental retardation: a population study. Am J Ment Retard. 1995;99:595–604.
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.
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.
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.
Michael J. Healthcare for all. Report of the independent inquiry into access to healthcare for people with learning disabilities. London: Department of Health; 2008.
Ward RL, Nichols AD, Freedman RI. Uncovering health care inequalities among adults with intellectual and developmental disabilities. Health Soc Work. 2010;35:280–90.
Beange H. Caring for a vulnerable population. Med J Aust. 1996;164:159–60.
Department for Work and Pensions. Fulfilling potential – outcomes and indicators framework: second annual progress report. London: Stationary Office; 2015.
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.
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.
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.
Minihan PM, Dean DH, Lyons CM. Managing the care of patients with mental retardation: a survey of physicians. Ment Retard. 1993;31:239–46.
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.
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.
Evenhuis H. Medical aspects of ageing in a population with intellectual disability: I. Visual impairment. J Intellect Disabil Res. 1995;39:19–25.
Evenhuis H. Medical aspects of ageing in a population with intellectual disability: II. Hearing impairment. J Intellect Disabil Res. 1995;39:27–33.
Emerson E. Challenging behaviour: analysis and intervention in people with severe intellectual disabilities. Cambridge: Cambridge University Press; 1995.
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.
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.
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.
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.
Day KA. The elderly mentally handicapped in hospital: a clinical study. J Ment Defic Res. 1987;31:131–46.
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.
Paul A. Epilepsy or stereotypy? Diagnostic issues in learning disabilities. Seizure. 1997;6:111–20.
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.
Kerr MP. Primary health care and health gain for people with a learning disability. Tizard Learn Disabil Rev. 1998;3:6–14.
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.
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.
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.
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.
Kinnell HG. Community medical care of people with mental handicaps: room for improvement. Ment Handicap Res. 1987;15:146–50.
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.
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.
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.
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.
Crocker AC, Yankauer A. Basic issues. Ment Retard. 1987;25:227–32.
NHS Wales. How to guide 1000 Lives Plus. Improving general hospital care of patients who have a learning disabilities. Wales: NHS Wales; 2014.
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.
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.
Nightingale C. Barriers to health access: a study of cervical screening for women with learning disabilities. Clin Psychol Forum. 2000;137:26–30.
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.
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.
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.
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.
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.
Royal College of General Practitioners. Learning disabilities; 2018. http://www.rcgp.org.uk/learningdisabilities/. Viewed 26 Jan 2018.
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.
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.
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.
Turner NJ, Brown AR, Baxter KF. Consent to treatment and the mentally incapacitated adult. J R Soc Med. 1999;92:290–2.
Mental Capacity Act. London: The Stationery Office; 2005, c.9.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Glover G, Niggebrugge A. The uptake of health checks for adults with learning disabilities 2008/9 to 2012/13. London: Public Health England; 2013.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2019 Springer Nature Switzerland AG
About this chapter
Cite this chapter
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
Download citation
DOI: https://doi.org/10.1007/978-3-319-90083-4_19
Published:
Publisher Name: Springer, Cham
Print ISBN: 978-3-319-90082-7
Online ISBN: 978-3-319-90083-4
eBook Packages: MedicineMedicine (R0)