Skip to main content

Individuals with Intellectual Disabilities: A Review of the Literature on Decision-Making since the Convention on the Rights of People with Disabilities (CRPD)

Abstract

To achieve the basic human right of autonomy, individuals, including those with intellectual disabilities (ID), must be able to practice decision-making, that is, to make their own decisions and communicate these decisions to others. In support of autonomous decision-making, Article 12 of the United Nations Convention on the Rights of People with Disabilities (CRPD) stresses the right of individuals with disabilities to legal capacity on an equal basis with others.1Supported decision-making approaches may aid individuals with ID in achieving this right. The question remains whether the enactment of the CRPD indeed is translated into opportunities for autonomous and supported decision-making among individuals with ID. In order to examine this question, a systematic review of bibliographic databases since 2008, when the CRPD came into force, was conducted in order to map the current state of decision-making among individuals with ID, and to identify areas in need of improvement. Twenty-seven manuscripts were reviewed, most focusing on decision-making within the fields of residential settings, health care, and sexuality-related decisions. This review showed that difficulties in decision-making in the area of ID remain during the early years after the CRPD entered into effect. These difficulties are related to the individuals with ID themselves, to their caregivers, and to the service system. No working models on supported decision-making for this population were found. The discussion highlights the importance of developing decision-making skills among people with ID, allowing them opportunities for decision-making, training professionals in supported decision-making, and fostering the philosophy of person-centered planning.

References

  1. UN General Assembly: Convention on the Rights of Persons with Disabilities A/RES/61/106: Resolution. 24 January 2007. Available from URL: http://www.unhcr.org/refworld/docid/45f973632.html (accessed 6 June 2012).

  2. Schalock RL, Borthwich-Duffy SA, Bradley VJ, Buntinx WHE, Coulter EM, Craig EM, et al. Intellectual Disability: Definition, Classification, and Systems of Supports (11th edition). Washington DC: American Association on Intellectual and Developmental Disabilities; 2010.

    Google Scholar 

  3. Davis EL, Barnhill J, Saeed SYA. Treatment models for treating patients with combined mental illness and developmental disability. Psychiatr Q. 2008;79:205–23.

    Article  PubMed  Google Scholar 

  4. Lotan G, Ells C. Adults with intellectual and developmental disabilities and participation in decision making: ethical considerations for professional-client practice. J Intellect Dev Disabil. 2010;48:112–25.

    Article  Google Scholar 

  5. Neely-Barnes S, Marcenko M, Weber L. Does choice influence quality of life for people with mild intellectual disabilities? J Intellect Dev Disabil. 2008;46:12–26.

    Article  Google Scholar 

  6. Harpur P. Embracing the new disability rights paradigm: the importance of the Convention on the Rights of Persons with Disabilities. Disabil Soc. 2012;1:1–14.

    Article  Google Scholar 

  7. Kanter AS. There’s no place like home: the right to live in the community for people with disabilities, under international law and the domestic laws of the United States and Israel. Isr Law Rev. 2012;4:181–233.

    Article  Google Scholar 

  8. Wehmeyer ML, Bolding N. Enhanced self-determination of adults with intellectual disability as an outcome of moving to community-based work or living environments. J Intellect Disabil Res. 2001;45:371–83.

    Article  CAS  PubMed  Google Scholar 

  9. Murphy E, Clegg J, Almack K. Constructing adulthood in discussions about the futures of young people with moderate-profound intellectual disabilities. JARID. 2011;24:61–73.

    Google Scholar 

  10. Mental Capacity Act. Office of Public Sector Information: London; 2005.

    Google Scholar 

  11. Mill A, Mayes S, McConnell D. Negotiating autonomy within the family: the experiences of young adults with intellectual disabilities. Br J Learn Disabil. 2009;38:194–200.

    Article  Google Scholar 

  12. Garcia-Iriarte E, Kramer JC, Kramer JM, Hammel J. ‘Who did what?’: a participatory action research project to increase group capacity for advocacy. JARID. 2009;22:10–22.

    Google Scholar 

  13. Stancliffe RJ, Lakin KC, Larson S, Engler J, Taub S, Fortune J. Choice of living arrangements. J Intellect Disabil Res. 2011;55:746–62.

    Article  CAS  PubMed  Google Scholar 

  14. Bigby C, Bowers B, Webber R. Planning and decision making about the future care of older group home residents and transition to residential aged care. J Intellect Disabil Res. 2011;55:777–89.

    Article  CAS  PubMed  Google Scholar 

  15. Dunn MC, Clare ICH, Holland AJ. Substitute decision-making for adults with intellectual disabilities living in residential care: learning through experience. Health Care Anal. 2008;16:52–64.

    Article  PubMed  Google Scholar 

  16. Dunn MC, Clare CH, Holland AJ. Living ‘a life like ours’: support workers account of substitute decision-making in residential care homes for adults with intellectual disabilities. J Intellect Disabil Res. 2010;54:144–60.

    Article  CAS  PubMed  Google Scholar 

  17. Manji S, Dunn P. Supported empowerment for individuals with developmental disabilities and dementia. J Dev Disabil. 2010;16:44–52.

    Google Scholar 

  18. Chou YC, Pu C, Kröger T, Lee W, Chang S. Outcomes of a new residential scheme for adults with intellectual disabilities in Taiwan: a 2-year follow-up. J Intellect Disabil Res. 2011;55:823–31.

    Article  PubMed  Google Scholar 

  19. Heller T, Schindler A, Palmer SB, Wehmeyer ML, Parent W, Jenson R, et al. Self-determination across the life span: issues and gaps. Exceptionality. 2011;19:31–45.

    Article  Google Scholar 

  20. Timmons JC, Hall AC, Bose J, Wolfe A, Winsor J. Choosing employment: factors that impact employment decisions for individuals with intellectual disability. J Intellect Dev Disabil. 2001;49:288–99.

    Google Scholar 

  21. Lennox N, Taylor M, Rey-Conde T, Bain C, Boyle FM, Purdie DM. Ask for it: development of a health advocacy intervention for adults with intellectual disability and their general practitioners. Health Promot Int. 2004;19:167–75.

    Article  PubMed  Google Scholar 

  22. Ferguson M, Jarrett D, Terras M. Inclusion in healthcare choices: the experiences of adults with learning disabilities. Br J Learn Disabil. 2010;39:73–83.

    Google Scholar 

  23. Wagemans A, van Schrojenstein Lantman-de-Valk H, Tuffrey-Wijne I, Widdershoven G, Curfs L. End-of-life decisions: an important theme in the care for people with intellectual disabilities. JIDR. 2010;54:516–24.

    CAS  PubMed  Google Scholar 

  24. Fisher KM, Green MJ, Orkin FK, Chinchilli VM. A content analysis from a US statewide survey of memorable healthcare decisions for individuals with intellectual disability. J Intellect Dev Disabil. 2009;34:258–65.

    Article  PubMed  PubMed Central  Google Scholar 

  25. Fisher KM, Orkin FK, Green MJ, Chinchilli VM, Bhattacharya A. Proxy healthcare decision-making for persons with intellectual disability: perspectives of residential-agency directors. J Intellect Dev Disabil. 2009;114:401–10.

    Article  Google Scholar 

  26. Heslop P, Flokes L, Rodgers J, Hillman SA. Informed decision-making by people with intellectual disabilities (ID) when taking psychotrophic medication? Step 1; the provision of information. J Intellect Disabil Res. 2004;48:471.

    Google Scholar 

  27. Eklund M, Ostman M. Belonging and doing: important factors for satisfaction with sexual relations as perceived by people with persistent mental illness. Int J Soc Psychiatry. 2010;56:336–47.

    Article  PubMed  Google Scholar 

  28. Lyden, M. Assessment of sexual consent capacity. Sex Disabil. 2007;25:3–20.

    Article  Google Scholar 

  29. Dukes E, McGuire BE. Enhancing capacity to make sexuality-related decisions in people with an intellectual disability. J Intellect Disabil Res. 2009;53:727–34.

    Article  CAS  PubMed  Google Scholar 

  30. Conder J, Mirfin-Veitch B, Sanders J, Munford R. Planned pregnancy, planned parenting: enabling choice for adults with a learning disability. Br J of Learn Disabil. 2010;39:105–12.

    Article  Google Scholar 

  31. McGuire BE, Bayley AA. Relationships, sexuality and decision-making capacity in people with an intellectual disability. Curr Opin Psychiatry. 2011;24:398–402.

    Article  PubMed  Google Scholar 

  32. Chou YC, Lu ZY. Deciding about sterilization: perspectives from women with an intellectual disability and their families in Taiwan. J Intellect Disabil Res. 2011;55:63–74.

    Article  PubMed  Google Scholar 

  33. Ko NY, Muecke M. Reproductive decision-making among HIV-positive couples in Taiwan. J Nurs Scholarsh. 2005;37:41–7.

    Article  PubMed  Google Scholar 

  34. McDonald KE, Keys CB, Henry DB. Gatekeepers of science: attitudes toward the research participation of adults with intellectual disability. Am J Ment Retard. 2008;113:466–78.

    Article  PubMed  Google Scholar 

  35. Feiler A, Watson D. Involving children with learning and communication difficulties: the perspectives of teachers, speech and language therapists and teaching assistants. Br J Learn Disabil. 2010;39:113–20.

    Article  Google Scholar 

  36. Hodge, S. What is the potential of augmentative and alternative communication not being realized? Exploring the experiences of people who use communication aids. Disabil Soc. 2007;22:457–71.

    Article  Google Scholar 

  37. Khemka I, Hickson L, Casella M, Accetturi N, Rooney ME. Impact of coercive tactics on the decision-making of adolescents with intellectual disabilities. JIDR. 2009;53:353–62.

    CAS  PubMed  Google Scholar 

  38. Khemka I, Hickson L. The role of motivation in the decision making of adolescents with mental retardation. In: Switzky HN, (editor). International Review of Research in Mental Retardation. Amsterdam: Elsevier; 2006. p.199–255.

    Google Scholar 

  39. Lyden M. Capacity issues related to healthcare proxy. Ment Retard. 2006;44:272–82.

    Article  PubMed  Google Scholar 

  40. Wong JG, Clare ICH, Holland AJ, Watson PC, Gunn M. The capacity of people with a ‘mental disability’ to make a health care decision. Psychol Med. 2000;30:295–306.

    Article  CAS  PubMed  Google Scholar 

  41. Willner P, Bailey R, Parry R, Dymond S. Performance in temporal discounting tasks by people with intellectual disabilities reveals difficulties in decision-making and impulse control. AJIDD. 2010;115:157–71.

    PubMed  Google Scholar 

  42. Meltzer L. Executive function: Theoretical and conceptual frameworks. In: Meltzer L, (editor). Executive Function in Education: From Theory to Practice. New York, NY: Guilford Press; 2007. p.1–3.

    Google Scholar 

  43. Dymond S, Bailey R, Willner P, Parry R. Symbol labeling improves advantageous decision-making on the Iowa Gambling Task in people with intellectual disabilities. Res Dev Disabil. 2010;31:536–44.

    Article  PubMed  Google Scholar 

  44. Bailey R, Willner P, Dymond S. A visual aid to decision-making for people with intellectual disabilities. Res Dev Disabil. 2011;32:37–46.

    Article  PubMed  Google Scholar 

  45. Mitchell W, Franklin A, Greco V, Bell M. Working with children with learning disabilities and/ or who communicate non-verbally: research experiences and their implications for social work education, increased participation and social inclusion. Soc Work Edu. 2009;28:309–24.

    Article  Google Scholar 

  46. Freedman RI, Chassler D. Physical and behavioral health of adults with mental retardation across residential settings. Public Health Rep. 2004;119:401–8.

    Article  PubMed  PubMed Central  Google Scholar 

  47. Brown I, Brown RI. Quality of Life and Disability: An Approach for Community Practitioners. London: Jessica Kingsley Publishers Ltd; 2003.

    Google Scholar 

  48. Lane KL, Carter EW, Sisco L. Paraprofessional involvement in self-determination instruction for students with high-incidence disabilities. EC. 2012;78:237–51.

    Google Scholar 

  49. Willner P, Jenkins R, Rees P, Griffiths VJ, John E. Knowledge of mental capacity issues in community teams for adults with learning disabilities. JARID. 2011;24:159–71.

    Google Scholar 

  50. Da Silva Martins C, Willner P, Brown A, Jenkins R. Knowledge of advocacy options within services for people with learning disabilities. JARID. 2011;24:274–9.

    Google Scholar 

  51. United Kingdom initial report on the United Nations Convention on the Rights of Persons with Disability. Office for Disability Issues. UK: HM Government; 2011. Available from URL: http://odi.dwp.gov.uk/docs/disabled-people-and-legislation/uk-initial-report.pdf (accessed 10 August 2012).

    Google Scholar 

  52. Szerletics A. Best interests decision-making under the Mental Capacity Act Essex Autonomy Project Green Paper Report. University of Essex: Essex Autonomy Project; 2011. Available from URL: http://autonomy.essex.ac.uk/best-interests-decision-making-under-the-mental-capacity-act (accessed 20 September 2012).

  53. Adults with Incapacity (Scotland) Act (2000). A briefing paper for voluntary sector service providers. Scotland.

    Google Scholar 

  54. Crowther MA, Cook DJ. Trials and tribulations of systematic reviews and meta-analyses. Hematology. 2007;1:493–7.

    Article  Google Scholar 

  55. Gruskin S. Ethics, human rights, and public health. Am J Public Health. 2002;92:698.

    Article  PubMed  PubMed Central  Google Scholar 

  56. Brown I, Brown RI. Choice as an aspect of quality of life for people with intellectual disabilities. JPPID. 2009;6:11–8.

    Google Scholar 

  57. Holburn S, Cea CD. Excessive positivism in person-centered planning. Research and practice for persons with severe disabilities. 2007;32:167–72.

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Shirli Werner PhD.

Rights and permissions

Open Access  This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made.

The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

To view a copy of this licence, visit https://creativecommons.org/licenses/by/4.0/.

The Creative Commons Public Domain Dedication waiver (https://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Cite this article

Werner, S. Individuals with Intellectual Disabilities: A Review of the Literature on Decision-Making since the Convention on the Rights of People with Disabilities (CRPD). Public Health Rev 34, 14 (2012). https://0-doi-org.brum.beds.ac.uk/10.1007/BF03391682

Download citation

  • Published:

  • DOI: https://0-doi-org.brum.beds.ac.uk/10.1007/BF03391682

Keywords