References
- Australian Institute of Health and Welfare. Mortality patterns among people using disability support services. Canberra: AIHW; 2020.
- Royal Commission into Violence Abuse Neglect and Exploitation of People with Disability. Report - Public hearing 4: Healthcare for people with cognitive disability. Sydney: Commonwealth of Australia; 2020.
- Salomon C, Trollor J. A scoping review of the causes and contributers to the deaths of people with disability in Australia. Sydney: Department of Developmental Disability Neuropsychiatry UNSW; 2019.
- American Psychiatric Association. Diagnostic and statistical manual of mental disorders 5-TR Washington, DC2022.
- American Psychiatric Association. What Is Intellectual Disability? . 2021.
- World Health Organisation. International Classification of Functioning, Disability and Health International Classification of Functioning, Disability and Health.
- Centre for Disease Control. Disability and Health Promotion [Internet]: US Department of Health and Human Services; 2020 [cited 04/08/2023] Available from: https://www.cdc.gov/ncbddd/disabilityandhealth/disability.html.
- Kinnear D, Morrison J, Allan L, Henderson A, Smiley E, Cooper SA. Prevalence of physical conditions and multimorbidity in a cohort of adults with intellectual disabilities with and without Down syndrome: cross-sectional study. BMJ Open. 2018 Feb 5;8(2):e018292.
- van Schrojenstein Lantman-De Valk HM, Metsemakers JF, Haveman MJ, Crebolder HF. Health problems in people with intellectual disability in general practice: a comparative study. Fam Pract. 2000 Oct;17(5):405-407.
- World Health Organisation. Global report on health equity for persons with disabilities. Geneva: 2022.
- White P, Chant D, Edwards N, Townsend C, Waghorn G. Prevalence of Intellectual Disability and Comorbid Mental Illness in an Australian Community Sample. Australian & New Zealand Journal of Psychiatry. 2005 2005/05/01;39(5):395-400.
- Liao P VC, Trollor J, Reppermund S,. Prevalence and incidence of physical health conditions in people with intellectual disability – a systematic review. PLoS ONE. 2021;16(8): e0256294.
- Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Statement of Professor Julian Norman Trollor. 2020 Contract No.: STAT.0049.0001.0001.
- Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Overview of responses to the experience of First Nations People with Disability in Australia Issues paper. Brisbane: Commonwealth of Australia; 2021.
- Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Responses to the Experiences of culturally and linguistically diverse people with disability issues paper. Brisbane: Commonwealth of Australia; 2021.
- National Indigenous Australians Agency. 2023 Commonwealth Closing the Gap Implementation Plan. Canberra: Commonwealth of Australia; 2023.
- Iacono T, Bigby C, Unsworth C, Douglas J, Fitzpatrick P. A systematic review of hospital experiences of people with intellectual disability. BMC Health Serv Res. 2014;14(1):1-8.
- Glover G, Williams R, Tompkins G, Oyinlola J. An observational study of the use of acute hospital care by people with intellectual disabilities in England. J Intellect Disabil Res. 2019 Feb;63(2):85-99.
- Tuffrey-Wijne I, Goulding L, Gordon V, Abraham E, Giatras N, Edwards C, et al. The challenges in monitoring and preventing patient safety incidents for people with intellectual disabilities in NHS acute hospitals: evidence from a mixed-methods study. BMC Health Serv Res. 2014;14(432).
- Trollor J, Srasuebkul P, Xu H, Howlett S. Cause of death and potentially avoidable deaths in Australian adults with intellectual disability using retrospective linked data. BMJ Open. 2017 Feb 7;7(2):e013489.
- O’Leary L, Hughes-McCormack L, Dunn K, Cooper S-A. Early death and causes of death of people with Down syndrome: A systematic review. Journal of Applied Research in Intellectual Disabilities. 2018;31(5):687-708.
- Emerson E, Baines S. Health inequalities and people with learning disabilities in the UK: 2010. Lancaster: Improving Health and Lives: Learning Disabilities Observatory, 2010.
- Trollor JN, Salomon C, Franklin C. Prescribing psychotropic drugs to adults with an intellectual disability. Aust Prescr. 2016 Aug;39(4):126-130.
- Tuffrey-Wijne I, Giatras N, Goulding L, Abraham E, Fenwick L, Edwards C, et al. 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 Serv Deliv Res. 2013;1(13).
- Commonwealth of Australia. Australia’s Disability Strategy 2021 - 2031. Canberra: Commonwealth of Australia (Department of Social Services); 2021.
- Fortune N, Madden RH, Clifton S. Health and access to health services for people with disability in Australia: data and data gaps. International Journal of Environmental Research and Public Health. 2021;18(21):11705.
- Weise JC, Srasuebkul P, Trollor JN. Potentially preventable hospitalisations of people with intellectual disability in New South Wales. Med J Aust. 2021 Jul;215(1):31-36.
- Australian Council of Learned Academies. Ensuring Occupations are Responsive to People with Disability. Acton: ACOLA; 2022.
- Australian Government Department of Health. National Roadmap for Improving the Health of People with Intellectual Disability. Canberra: Commonwealth of Australia; 2021.
- Department of Developmental Disability Neuropsychiatry. Accessible Mental Health Services for People with an Intellectual Disability: A Guide for Providers. Sydney: Department of Developmental Disability Neuropsychiatry; 2021.
- Weise J, Pollack AJ, Britt H, Trollor JN. Who provides primary health care for people with an intellectual disability: General practitioner and general practice characteristics from the BEACH dataset. Journal of Intellectual & Developmental Disability. 2017 2017/10/02;42(4):416-421.
- Molloy R, Munro I, Pope N. Understanding the experience of diagnostic overshadowing associated with severe mental illness from the consumer and health professional perspective: a qualitative systematic review protocol. JBI Evid Synth.19(6):1362–1368.
- Mason J, Scior K. ‘Diagnostic Overshadowing’ Amongst Clinicians Working with People with Intellectual Disabilities in the UK. Journal of Applied Research in Intellectual Disabilities. 2004;17(2):85-90.
- Oulton K, Gibson F, Carr L, Hassiotis A, Jewitt C, Kenten C, et al. Mapping staff perspectives towards the delivery of hospital care for children and young people with and without learning disabilities in England: a mixed methods national study. BMC Health Serv Res. 2018 Mar 23;18(1):203.
- Pelleboer-Gunnink HA, Van Oorsouw W, Van Weeghel J, Embregts P. Mainstream health professionals’ stigmatising attitudes towards people with intellectual disabilities: a systematic review. J Intellect Disabil Res. 2017 May;61(5):411-434.
- Bunbury S. Unconscious bias and the medical model: How the social model may hold the key to transformative thinking about disability discrimination. International Journal of Discrimination and the Law. 2019 2019/03/01;19(1):26-47.
- Adam E, Sleeman KE, Brearley S, Hunt K, Tuffrey-Wijne I. The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review. Palliative Medicine. 2020 2020/09/01;34(8):1006-1018.
- Hunt K, Bernal J, Worth R, Shearn J, Jarvis P, Jones E, et al. End-of-life care in intellectual disability: a retrospective cross-sectional study. BMJ Support Palliat Care. 2020 Dec;10(4):469-477.
- Kripke C. Patients with Disabilities: Avoiding Unconscious Bias When Discussing Goals of Care. American Family Physician. 2017;96(3):192-195.
- Möller C, Passam S, Riley S, Robson M. All inside our heads? A critical discursive review of unconscious bias training in the sciences. Gender, Work & Organization.n/a(n/a).
- Tuffrey-Wijne I, Goulding L, Giatras N, Abraham E, Gillard S, White S, et al. The barriers to and enablers of providing reasonably adjusted health services to people with intellectual disabilities in acute hospitals: evidence from a mixed-methods study. BMJ Open. 2014 Apr 16;4(4):e004606.
- Lalive d’Epinay Raemy S, Paignon A. Providing equity of care for patients with intellectual and developmental disabilities in Western Switzerland: a descriptive intervention in a University Hospital. Int J Equity Health. 2019;18(1):46.
- Australian Institute of Health and Welfare. Disability Support for Indigenous Australians. [Internet] Canberra: AIHW; 2021 Available from: https://www.aihw.gov.au/reports/australias-welfare/disability-support-for-indigenous-australians.
- United Nations. Convention on the Rights of Persons with Disabilities. [Internet] New York: United Nations; 2006 Available from: https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-persons-disabilities?msclkid=729f9834a99411ec8d4242bb9f12a6fb.
- Australia CUD. Creating a more inclusive world. [Internet]: Centre for Universal Design Australia; 2023 [cited 18 January 2023] Available from: https://universaldesignaustralia.net.au/.
- Bradbury-Jones C, Rattray J, Jones M, MacGillivray S. Promoting the health, safety and welfare of adults with learning disabilities in acute care settings: A structured literature review. J Clin Nurs. 2013;22(11/12) 1497-1509.
- Brolan CE WR, Lennox NG, Gomez MT, Kay M, Hill PS. Invisible populations: parallels between the health of people with intellectual disability and people of a refugee background. Aust J Prim Health. 2011 Sep 26;17(3):210.
- Finlayson J, De Amicis L, Gallacher S, Munro R, Crockett J, Godwin J, et al. Reasonable adjustments to provide equitable and inclusive assessment, screening and treatment of osteoporosis for adults with intellectual disabilities: A feasibility study. J Appl Res Intellect Disabil. 2019 Mar;32(2):300-312.
- Heslop P, Turner S, Read S, Tucker J, Seaton S, Evans B. Implementing reasonable adjustments for disabled people in healthcare services. Nursing Standard. 2019.
- Walker A, Trollor J, Florio T, Srasuebkul P. Predictors and outcomes of recognition of intellectual disability for adults during hospital admissions: A retrospective data linkage study in NSW, Australia. PloS one. 2022;17(3).
- Hayward L, Fragala-Pinkham M, Schneider J, Coe M, Vargas C, Wassenar A, et al. Examination of the short-term impact of a disability awareness training on attitudes toward people with disabilities: A community-based participatory evaluation approach. Physiotherapy Theory and Practice. 2021 2021/02/01;37(2):257-270.
- Australian Commission on Safety and Quality in Health Care. Fact sheet 9 – Attributes – Supporting person‑centred attributes in your healthcare organisation. Sydney: ACSQHC; 2018.
- Australian Commission on Safety and Quality in Health Care. National Safety and Quality Health Service Standards (second edition). Sydney: ACSQHC; 2017.
- Moloney M, Hennessy T, Doody O. Reasonable adjustments for people with intellectual disability in acute care: a scoping review of the evidence. BMJ Open. 2021 Feb 22;11(2):e039647.
- Aitken Z, Bishop GM, Disney G, Emerson E, Kavanagh AM. Disability-related inequalities in health and well-being are mediated by barriers to participation faced by people with disability. A causal mediation analysis. Soc Sci Med. 2022 Dec;315:115500.
- Monika Mitra LL-B, Ian Moura, Angel Miles, and H. Stephen Kaye,. Advancing Health Equity And Reducing Health Disparities For People With Disabilities In The United States. Health Affairs. 2022;41(10):1379-1386.
- NSW Agency for Clinical Innovation. Building Capability in NSW health services for people with intellectual disability: The Essentials. [Internet] Chatswood: NSW ACI; 2017. Available from: https://aci.health.nsw.gov.au/resources/intellectual-disability/id-essentials/resources/the-essentials.
- Emerson E, Baines S. Health inequalities and people with learning disabilities in the UK. Tizard Learn Disabil Rev. 2011;16:42-48.
- Australia SP. Communication Disability [Internet]: Speech Pathology Australia; 2023 [cited 6 June] Available from: https://communicationhub.com.au/FactSheets.
- Agaronnik N, Campbell EG, Ressalam J, Iezzoni LI. Communicating with patients with disability: Perspectives of practicing physicians. J Gen Intern Med. 2019;34:1139-1145.
- NSW Ministry of Health. Policy Directive Responding to Needs of People with Disability during Hospitalisation. [Internet] Sydney: NSW Ministry of Health; 2017 [cited 14 January 2019] Available from: https://www1.health.nsw.gov.au/pds/ActivePDSDocuments/PD2017_001.pdf.
- Australian Commission on Safety and Quality in Health Care. Health literacy: Taking action to improve safety and quality. Sydney: ACSQHC; 2014.
- Costello A, Hudson E, Morrissey S, Sharma D, Kelly D, Doody O. Management of psychotropic medications in adults with intellectual disability: a scoping review. Ann Med. 2022;54(1):2486-2499.
- Lonchampt S, Gerber F, Aubry J-M, Desmeules J, Kosel M, Besson M. Prevalence of polypharmacy and inappropriate medication in adults with intellectual disabilities in a hospital setting in Switzerland. Front Psychiatry. 2021;12:614825.
- McMahon M, Hatton C, Bowring DL. Polypharmacy and psychotropic polypharmacy in adults with intellectual disability: A cross-sectional total population study. J Intellect Disabil Res. 2020;64(11):834-851.
- Australian Commission on Safety and Quality in Health Care. Medication without harm – WHO Global Patient Safety Challenge. Australia’s response. Sydney: ACSQHC; 2020.
- O’Dwyer M, McCallion P, McCarron M, O’Connell J, Henman M. Measuring drug burden in older adults with intellectual disabilities: Critical issues for consideration in finding the optimal measure to improve safety of medicines use. Expert Opin Drug Saf. 2020;19(6):649-652.
- Talevski J WSA, Rasmussen B, Kemp G, Beauchamp A, . Teach-back: A systematic review of implementation and impacts. PLoS ONE 2020;15(4).
- Ward LM, Cooper S-A, Henderson A, Stanley B, Greenlaw N, Pacitti C, et al. A study on prescriptions contributing to the risk of high anticholinergic burden in adults with intellectual disabilities: retrospective record linkage study. Ann Gen Psychiatry. 2022;21(1):41.
- Australian Commission on Safety and Quality in Health Care. Implementing the Comprehensive Care Standard: A conceptual model for supporting comprehensive care delivery. Sydney: ACSQHC; 2018.
- Robertson M, Colburn J, Gerber M. Applying a trauma-informed approach to home visits. J Am Geriatr Soc. 2024 Jan 11.
- Jackson AL, Waters, S., & Abell, T,. Taking Time – A Literature Review: Background for a trauma-informed framework for supporting people with intellectual disability. . Melbourne, Australia: : Berry Street., 2915.
- Elizabeth Evans PJT. Dementia in people with Intellectual Disability: Guidelines for Australian GPs. Faculty of Medicine, The Department of Developmental Disability Neuropsychiatry 3DN: Department of Developmental Disability Neuropsychiatry UNSW; 2018.
- Tuffrey-Wijne I. Palliative Care and intellectual disabilities [Internet]: University of Hertfordshire; 2017 [cited 10 March 2023] Available from: http://www.intellectualdisability.info/physical-health/articles/cancer,-palliative-care-and-intellectual-disabilities#:~:text=As%20people%20with%20intellectual%20disabilities%20are%20living%20longer%2C,at%20the%20end%20of%20their%20lives%20%28Tuffrey-Wijne%202003%29.
- Speech Pathoigy A. Intellectual Disability and Communication [Internet] Australia: Speech Pathology Australia; [updated 2023; cited 26 June ] Available from: https://communicationhub.com.au/Communication_Hub/Resources/Fact_Sheets/Intellectual_disability.aspx.
- Austalian Commission on Safety and Quality in Health Care. Psychotropic Medicines in Cognitive Disability or Impairment Clinical Care Standard. 2024.
- Safer Care Victoria. Caring for people displaying acute behavioural disturbance. Clinical guidance to improve care in emergency settings. Melbourne: Victorian Government; 2021.
- Ede J, Petrinic T, Westgate V, Darbyshire J, Endacott R, Watkinson PJ. Human factors in escalating acute ward care: a qualitative evidence synthesis. BMJ Open Qual. 2021;10(1):e001145.
- Cooper G. Using Soft Signs to Identify Deterioration. Wessex Patient Safety Collaborative white paper: Wessex Academic Health Science Network; 2020.
- Psychotropic Expert Group. Therapeutic guidelines: psychotropic, version 8. Therapeutic Guidelines Limited; 2021.
- Australian Human Rights Commission. Disability Action Plan Guide. 2021.
- NDIS Quality and Safeguards Commission. Understanding behaviour support and restrictive practices - for providers.
- Cognitive Decline Partnership Centre. Supported decision-making. University of Sydney: University of Sydney 2022.
Book traversal links for Book pager
- Previous Glossary