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Supported Decision-Making and Personal Autonomy for Persons with Intellectual Disabilities: Article 12 of the UN Convention on the Rights of Persons with Disabilities

Published online by Cambridge University Press:  01 January 2021

Nandini Devi
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Extract

Making decisions is an important component of everyday living, and issues surrounding autonomy and self-determination are crucial for persons with intellectual disabilities. Adults with intellectual disabilities are characterized by the limitations in their intellectual functioning and in their adaptive behavior, which compromises three skill types (conceptual skills, social skills, and practical skills), and this starts before the age of 18. Though persons with intellectual disabilities are characterized by having these limitations, they are thought to face significant decisionmaking challenges due to their disability. Moving away from this generalization, Article 12 (Equal recognition before the law) of the United Nations (UN) Convention on the Rights of Persons with Disabilities (herewith called “the Convention”) addresses this issue of decision-making for persons with disabilities, recognizing the right to legal capacity.

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 41 , Issue 4 , Winter 2013 , pp. 792 - 806
Copyright
Copyright © American Society of Law, Medicine and Ethics 2013

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References

Schalock, R. L. Borthwick-Duffy, S. A. Bradley, V. J. Buntix, W. H. E. Coulter, D. I. Craig, E. M., “Intellectual Disability: Definition, Classification, and System of Support,” American Association on Intellectual and Developmental Disabilities, 2010, available at <http://aaidd.org/docs/default-source/sis-docs/aaiddfaqonid_template.pdf?sfvrsn=2> (last visited September 20, 2013).+(last+visited+September+20,+2013).>Google Scholar
Quinn, G., “Personhood & Legal Capacity, Perspectives on the Paradigm Shift of Article 12 CRPD,” presentation at the HPOD Conference, Harvard Law School, Boston, February 20, 2010, available at <http://www.nuigalway.ie/cdlp/staff/gerard_quinn.html> (last visited September 20, 2013).+(last+visited+September+20,+2013).>Google Scholar
Article 12 of the UN Convention on the Rights of Persons with Disabilities recognizes the right to legal capacity on an equal basis to others.Google Scholar
Salzman, L., “Rethinking Guardianship (Again) Substituted Decision-Making as a Violation for the Integrations Mandate of Title II of the Americans with the Disability Act,” Cardozo Legal Studies Research Paper No.282, University of Colorado Law Review 81, no.157 (2009): 157–205. For further details of substituted decision-making when it comes to financial arrangements see, Suto, W. M. I. Clare, C. H. Holland, A. J., “Substitute Financial Decision-Making in England and Wales: A Study of the Court of Protection,” Journal of Social Welfare and Family Law 24, no. 1 (2002): 37–54.Google Scholar
United Nations, From Exclusion to Equality, Realizing the Rights of Persons with Disabilities' Disabilities, Handbook for Parliamentarians on the Convention on the Rights of Persons with Disabilities and Its Optional Protocol (Geneva: United Nations, 2007): At 90.Google Scholar
Dhanda, A., “Legal Capacity in the Disability Rights Convention: Stranglehold of the Past or Lodestar for the Future?” Syracuse Journal of International Law and Commerce 34, no. 2 (2007): 429–462, at 431.Google Scholar
Devi, N. Bickenbach, J. B. Stucki, G., “Moving towards Substituted or Supported Decision-Making?: Article 12 of the Convention on the Rights of Persons with Disabilities,” European Journal of Disability Research 5, no. 4 (2011): 249–264.CrossRefGoogle Scholar
Dinerstein, R. D., “Implementing Legal Capacity under Article 12 of the UN Convention on the Rights of Persons with Disabilities: The Difficult Road from Guardianship to Supported Decision-Making,” Human Rights Brief 19, no. 2 (2012): at 2.Google Scholar
Id., at 2.Google Scholar
Jenkinson, J. C., “Factors Affecting Decision-Making by Young Adults with Intellectual Disabilities,” American Journal on Mental Retardation 104, no. 4 (1999): 320–329, at 321.2.0.CO;2>CrossRefGoogle Scholar
The status approach is when a disability automatically disqualifies an individual from making decisions, and having those decisions respected.Google Scholar
Id., at 125.Google Scholar
Bach, M. Kerzner, L., “A New Paradigm for Protecting Autonomy and the Right to Legal Capacity,” The Ontario Law Commission, Canada, 2010. This article is available on the Ontario Law Commission website, available at <http://www.lco-cdo.org/en/disabilities-call-for-papers-bach-kerzner> (last visited October 19,2013).+(last+visited+October+19,2013).>Google Scholar
Conly, S., Against Autonomy Justifying Coercive Paternalism (New York: Cambridge University Press, 2013).Google ScholarPubMed
An intellectual disability is caused by the presence of chromosome abnormalities, single gene disorders, environmental factors, such as perinatal trauma or intra-uterine infections, maternal and early childhood nutritional deficits, and/or as severe childhood neglect and deprivation. For more information see, the World Health Organization on Mental Health and Intellectual Disabilities,Addressing the Mental Health Needs of People with Intellectual Disabilities (2001), Report by the Mental Health Special Interest Research Group of the International Association for the Scientific Study of Intellectual Disabilities to the World Health Organization, at 5, available at<http://iassid.org/pdf/mh-sirg-who-final.pdf> (last visited September 20, 2013).+(last+visited+September+20,+2013).>Google Scholar
Schalock, R. L., “The Evolving Understanding of the Construct of Intellectual Disability,” Journal of Intellectual and Developmental Disability 36, no. 4 (2010): 223–233.Google Scholar
American Association on Intellectual and Developmental Disabilities, “Welcome to AAIDD,”2007, available at <http://www.aamr.org/content_104.cfm> (last visited September 20, 2013).+(last+visited+September+20,+2013).>Google Scholar
Bach, M., “Legal Capacity Personhood and Supported Decision-Making,” Canadian Association of Community Living, PowerPoint presentation (2006).Google Scholar
American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders, DSM-IV-TR, 4th ed. Text rev., Washington, D.C., 2000.Google Scholar
See the World Health Organization, The International Classification of Diseases (ICD), <http://www.who.int/classifications/icd/en/> (last visited September 20, 2013). It is the standard diagnostic tool from the World Health Organization (WHO) used for health management and clinical purposes. It includes the analysis of the general health situation of population groups including persons with intellectual disabilities.+(last+visited+September+20,+2013).+It+is+the+standard+diagnostic+tool+from+the+World+Health+Organization+(WHO)+used+for+health+management+and+clinical+purposes.+It+includes+the+analysis+of+the+general+health+situation+of+population+groups+including+persons+with+intellectual+disabilities.>Google Scholar
World Health Organization, International Classification of Diseases (IC– 10) (2010). This website provides information on the different levels of the severity of intellectual disability, available at <http://apps.who.int/classifications/icd10/browse/2010/en#/V> (last visited September 20, 2013).+(last+visited+September+20,+2013).>Google Scholar
The International Classification of Diseases (ICD) and Related Health Problems 10th Revision (ICD -10) Version for 2010, Chapter V – Mental and Behavioral Disorders (F00 – F99), F70 (WHO), available at <http://apps.who.int/classifications/icd10/browse/2010/en#/F70–F79> (last visited September 20, 2013).+(last+visited+September+20,+2013).>Google Scholar
ICD – 10 Version for 2010, Chapter V – Mental and Behavioral Disorders, F71, available at <http://apps.who.int/classifications/icd10/browse/2010/en#/F70–F79> (last visited September 20, 2013).+(last+visited+September+20,+2013).>Google Scholar
ICD – 10 Version for 2010, Chapter V – Mental and Behavioral Disorders, F72, available at <http://apps.who.int/classifications/icd10/browse/2010/en#/F70–F79> (last visited September 20, 2013).+(last+visited+September+20,+2013).>Google Scholar
ICD – 10 Version for 2010, Chapter V – Mental and Behavioral Disorders, F73, available at <http://apps.who.int/classifications/icd10/browse/2010/en#/F70–F79> (last visited September 20, 2013).+(last+visited+September+20,+2013).>Google Scholar
See a brief fact sheet regarding the fifth edition of the forthcoming edition of the Diagnostic and Statistical Manuel of Mental Disorders by the American Psychiatric Association, available at <http://www.dsm5.org/Documents/Intellectual%20Disability%20Fact%20Sheet.pdf> (last visited September 20, 2013).+(last+visited+September+20,+2013).>Google Scholar
See the International Classification of Diseases under revision and which will be updated to ICD-11, available at <http://apps.who.int/classifications/icd11/browse/f/en> (last visited September 23, 2013).+(last+visited+September+23,+2013).>Google Scholar
Quinn, G., “An Ideas Paper: ‘Rethinking Personhood: New Directions in Legal Capacity Law and Policy’ or ‘How to Put the ‘Shift’ Back into Paradigm Shift,” University of British Colombia, Vancouver Canada, paper presentation, September 2011, at 4, available at <http://cic.arts.ubc.ca/fileadmin/user_upload/CIC/July_2011/Gerard_Quinn_s_Keynote_–_April_29__2011.pdf> (last visited September 23, 2013).Google Scholar
Commissioner for Human Rights, “Who Gets to Decide? Right to Legal Capacity for Persons with Intellectual Disabilities and Psychosocial Disabilities,” Council of Europe, Strasberg, April 2012, at 4, available at <https://wcd.coe.int/ViewDoc.jsp?id=1908555#P222_13324> (last visited September 23, 2013).+(last+visited+September+23,+2013).>Google Scholar
The Mental Capacity Law (2005) is the current law in decision-making for those who lack the capacity to make decisions in the U.K. It can be found at: <http://www.legislation.gov.uk/ukpga/2005/9/contents> (last visited June 10, 2013).+(last+visited+June+10,+2013).>Google Scholar
Richardson, G, “Mental Disabilities and the Law: From Substituted to Supported Decision-Making?” Current Legal Problems 65, no. 1 (2012): 333– 354, at 340.CrossRefGoogle Scholar
See, The Department of Economy and Social Affairs, The Office of the UN High Commissioner for Human Rights, and the Inter-Parliamentary Union, From Exclusion to Equality: Realizing the Rights of Persons with Disabilities, the United Nations Handbook for Parliamentarian No. 14 (2007).Google Scholar
Kohn, N. A. Blumenthal, J. A., “A Critical Assessment of Supported Decision-Making for Persons Aging with Intellectual Disabilities,” Disability and Health Journal, Review Article (2013).CrossRefGoogle Scholar
The UN Committee on the Rights of Persons with Disabilities, which is mandated to interpret the CRPD, describes supported decision-making in their Handbook for Parliamentarians on the CRPD (2007) at 89.Google Scholar
Id., at 89.Google Scholar
Id., at 90.Google Scholar
Kerzner, L., “Paving the Way to Full Realization of the CRPD's Rights to Legal Capacity and Supported Decision-Making: A Canadian Perspective.” This paper was written for the legal capacity symposium on From the Margins: New Foundations for Personhood and Legal Capacity in the 21st Century being held at the University of British Colombia, Ontario, Canada: April 2011): At 13.Google Scholar
Id., at 14.Google Scholar
Glass, K. C., “Refining Definitions and Devising Instruments: Two Decades of Assessing Mental Competence,” International Journal of Law and Psychiatry 20, no. 1 (1977): 5–33, at 30.CrossRefGoogle Scholar
See Bach and Kerzner (2010) supra note 13, at 73 See Bach, M. (2007) Advancing Self-Determination of Persons with Intellectual Disabilities: Overview of the Supported Decision-Making Model and Legal Provisions in Canada, Inclusion Europe, Include 1/2007, at 3, available at <http://www.inclusion-europe.org/documents/INCL1_WEB_mini.pdf> (last visited June 20, 2013).+(last+visited+June+20,+2013).>Google Scholar
There is not just one type of supported decision-making model in development. There are other types of models being proposed – for example, the 2012 Stepped Model from the South Australian project. The Stepped model incorporates both supported and substituted decision-making, this model describes different interventions based on the level of autonomy retained by the individual, and the level of intervention by the State. They have different types of supported decision-making agreements which may suit different persons. For more information on this, see Brayley, J., Developing a Model of Practice for Supported Decision-Making, Office of the Public Advocate, South Australia, 2011, at 11, available at <http://www.opa.sa.gov.au/files/batch1376447055_supported_decision_making_practice_manual_v1–4.pdf> (last visited October 20, 2013).Google Scholar
See Bach, Kerzner, , supra note 13, at 65. They state that the minimum threshold of human agency, as they might characterize it, is: “to act in a way that at least one other person who has personal knowledge of an individual can reasonable ascribe to one's actions, personal will and/or intentions, memory, coherence through time, and communicative abilities to that effect.” They further state that the actions can be ascribed intentions and will can be from the past.Google Scholar
See Bach, Kerzner, (2010 supra note 13, at 83.Google Scholar
Id., at 83.Google Scholar
Id., at83.Google Scholar
Id., at 83.Google Scholar
Id., at 84.Google Scholar
Id., at84.Google Scholar
See the website for the Representation Agreement Act of British Columbia (1996), available at <http://www.bclaws.ca/EPLibraries/bclaws_new/document/ID/freeside/00_96405_01> (last visited September 23, 2013).+(last+visited+September+23,+2013).>Google Scholar
See Bach, Kerzner, (2010), supra note 13, at85.Google Scholar
Id., at 85.Google Scholar
For more information on the different supports in place, (2010), supra note 13, at 75. In life planning supports, individuals require assistance in person-centered planning – a process of identifying values and purpose, making key decisions in relation to their interests and making and executing the necessary agreements. Independent advocacy centers can assist the individual in expressing their wishes and informing other parties of their rights and for other parties to respect those rights. The role of the advocate could be to facilitate the implementation of the decisions made by the individual. See the rest of the article by Bach and Kerzner for the different types of supports in place at 77–81.Google Scholar
The Vulnerable Persons Living with a Disability Act (Manitoba C.C.S.M C. V90).Google Scholar
See Stanford Encyclopedia of Philosophy, s.v. “Autonomy in Moral and Political Philosophy,” available at <http://plato.stanford.edu/entries/autonomy-moral/> (last visited September 23, 2013).+(last+visited+September+23,+2013).>Google Scholar
See Beauchamp, T. L. Childress, J. F., Principles of Biomedical Ethics, 5th ed. (New York: Oxford University Press, 2001).Google Scholar
Id., at 58.Google Scholar
Id., at 63.Google Scholar
See Dhanda, supra note 6, at 434.Google Scholar
See Stanford Encyclopedia of Philosophy, s.v. “John Stuart Mill,” available at <http://plato.stanford.edu/entries/mill/> (last visited September 23, 2013).+(last+visited+September+23,+2013).>Google Scholar
Mill, J. S., On Liberty (London: Longman, Roberts & Green, 1869); see it also online via Bartleby, available at <http://www.bartleby.com/130/> (last visited September 23, 2013).Google Scholar
Collini, S. eds. J.S. Mill On Liberty and other writings, Cambridge texts in the History of Political Thought (Cambridge University Press, 2012) at 13.Google Scholar
Id., at 13.Google Scholar
Id., at 13.Google Scholar
Id., at 13.Google Scholar
Id., at 13.Google Scholar
Id., at 10.Google Scholar
Id., at Chapter III, available at <http://www.bartleby.com/130/3.html> (last visited September 23, 2013).+(last+visited+September+23,+2013).>Google Scholar
Id., supra note 61, at 13.Google Scholar
Ladenson, R. F., “Mill's Conception of Individuality,” Social Theory and Practice 4, no. 2 (1977): 167–182, at 174.CrossRefGoogle Scholar
See supra note 61.Google Scholar
Id., at 61.Google Scholar
See, the article entitled, “Legal Paternalism,” which concludes that “the state has the right to prevent self-regarding harmful conduct only when it is substantially non-voluntary or when temporary intervention is necessary to establish whether it is voluntary or not.” For more information on this see, Feinberg, J., “Legal Paternalism,” Canadian Journal of Philosophy 1, no. 1 (1971): 105–124, at 113.CrossRefGoogle Scholar
Richard, J. A., “Mill Versus Paternalism,” Ethics 90, no. 4 (1980): 470–489, at 473.Google Scholar
Conly, S., Against Autonomy Justifying Coercive Paternalism (New York: Cambridge University Press, 2013).Google ScholarPubMed
Id., at 16.Google Scholar
Id., at 16.Google Scholar
Id., at 19.Google Scholar
Id., at 19.Google Scholar
See, Graumann, S. in Chapter 5, “Resolving the Tension between Equality and Difference Notion of Discrimination,” in Anderson, J. Philips, J., eds., Disability and the Universal Declaration Human Rights: Legal, Ethical and Conceptual Implications on the Rights of Persons with Disabilities (SIM Special Issue, Netherlands Institute of Human Rights, 2012): at 92.Google Scholar
See Bach, Kerzner, (2010), supra note 13, at 31.Google Scholar
See the UN Convention on the Rights of Persons with Disabilities, Article 12 Definitions. It states: “For the purposes of the present Convention:… ‘Reasonable accommodation’ means necessary and appropriate modifications and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedom.”Google Scholar
Arscott, K. Stenfert, K. B. Dagman, D., “A Study of the Knowledge That People with Intellectual Disabilities Have of Their Prescribed Medication,” Journal of Applied Research in Intellectual Disabilities 13, no. 2 (2000): 90–99 And also see, Goldsmith, L. Skirton, H. Webb, C., “Informed Consent to Healthcare Interventions in People with Learning Disabilities: An Integrative Review,” Journal of Advanced Nursing 64, no. 6 (2008): 549–563.CrossRefGoogle Scholar
This easy format language is a clear language that persons with intellectual disabilities can easily understand the consistency of the language. This means using plain English language that is clear and simple format; using short sentences (no complicated phrases and words), and sometimes using pictures to convey the information.Google Scholar
See Bach, Kerzner, supra note 13, at 86.Google Scholar
See The website of the NUI Gulway, Centre for Disability, Law & Policy, “Making Your Decisions (Your Health): A Guide to Support Decision Making,” available at <http://www.nuigalway.ie/media/nuigalwayie/content/files/collegesschools/businesspublicpolicylaw/documentsforms/c-Your-Health-Doc.pdf> (last visited September 23, 2013).+(last+visited+September+23,+2013).>Google Scholar
Schweigert, P. Rowland, C., “Early Communication and Micro Technology: Instructional Sequence and Case Studies of Children with Severe Multiple Disabilities,” Augmentative and Alternative Communication 8, no. 4 (1992): 273–286.CrossRefGoogle Scholar
Schepis, M. Reid, D. Behrman, M., “Acquisition and Functional Use of Voice Output Communication by Persons with Profound Multiple Disabilities,” Behavioral Modification 20, no. 4 (1996): 451–468.CrossRefGoogle Scholar
See Bach, Kerzner, , supra note 13, at 84.Google Scholar
Id., at 93.Google Scholar
See Section 5 of the Mental Capacity Act (2005) of the UK.Google Scholar
See Section 2(1) of the Mental Capacity Act (2005) of the UK. This section of the law leads to determine what it means to have a disturbance or an impairment of the brain. Section 3(1) of the MCA states, “the individual is unable to understand, retain that information, use or weight up that information as part of the decision-making process, or to communicate this decision.”.Google Scholar
The Mental Capacity Act – guided by the Code of Practice (Department for Constitutional Affairs) – describes factors as a “best interest checklist” which is in paragraph 5.6 of the Code of Practice. It includes whether capacity will be regained, and if so when, whether the person can be permitted and encouraged to participate in the decision regardless of their lack of capacity, certain special consideration for life sustaining treatment, the person's wishes, feelings, beliefs and values, the view of other people who are deemed practicable and appropriate to consult, and all other circumstances deemed to be relevant.Google Scholar
Dunn, M. C. Isabel, C. H. Holland, J. A. Gunn, M. J., “Constructing and Reconstructing ‘Best Interests’: An Interpretative Examination of Substitute Decision-making under the Mental Capacity Act,” Journal of Social Welfare and Family Law 29, no. 2 (2007): 117–133, at 123.CrossRefGoogle Scholar
Dunn, M. C. Clare, C. H. Holland, A. J., “Substitute Decision-Making for Adults with Intellectual Disabilities Living in Residential Care: Learning through Experience,” Health Care Analysis 16, no. 1 (2008): 52–64, at 55.Google Scholar
Id., at 60.Google Scholar
Id., at 56.Google Scholar
Id., at 64.Google Scholar
Id., at 58.Google Scholar