REFERENCES
- Aas, S., and D. Wasserman. 2016. Brain-computer interfaces and disability: Extending embodiment, reducing stigma? Journal of Medical Ethics 42 (1):37–40. doi:https://doi.org/10.1136/medethics-2015-102807.
- American Bar Association 2017. Supported decision making resolution 113 to the ABA house of delegates. Prepared by the Commission on Disability Rights, Section of Civil Rights and Social Justice Section of Real Property, Trust and Estate Law, Commission on Law and Aging, 113. Last cccessed February 8, 2020. https://www.americanbar.org/content/dam/aba/administrative/law_aging/2017_SDM_%20Resolution_Final.pdf
- American Bar Association. 2016. PRACTICAL Tool for Lawyers: Steps in Supporting Decision Making. Prepared by the Commission on Law and Aging, Commission on Disability Rights, Section on Civil Rights and Social Justice, and Section on Real Property, Trust and Estate Law. Last accessed February 8, 2020. https://www.americanbar.org/groups/law_aging/resources/guardianship_law_practice/practical_tool/
- American Bar Association. 2018. State adult guardianship legislative summary: Directions of reform. Last accessed February 8, 2020. https://www.americanbar.org/content/dam/aba/administrative/law_aging/2018-adult-guardianship-legislative-summary.pdf
- Appelbaum, P. S. 2007. Assessment of patients’ competence to consent to treatment. New England Journal of Medicine 357 (18):1834–40. doi:https://doi.org/10.1056/NEJMcp074045.
- Arstein-Kerslake, A., J. Watson, M. Browning, J. Martinis, and P. Blanck. 2017. Future direction in supported decision making. Disability Studies Quarterly 37 (1):1–23. doi:https://doi.org/10.18061/dsq.v37i1.5070.
- Bach, M., and L. Kerzner. 2010. A new paradigm for protecting autonomy and the right to legal capacity. Prepared by The Law Commission of Ontario. Last accessed February 8, 2020. https://www.lco-cdo.org/wp-content/uploads/2010/11/disabilities-commissioned-paper-bach-kerzner.pdf
- Beauchamp, T. L., and J. F. Childress. 2019. Principles of biomedical ethics. 8th ed. New York: Oxford University Press.
- Bigby, C., J. Douglas, T. Carney, S. N. Then, I. Wiesel, and E. Smith. 2017. Delivering decision making support to people with cognitive disability—What has been learned from pilot programs in Australia from 2010 to 2015. Australian Journal of Social Issues 52 (3):222–40. doi:https://doi.org/10.1002/ajs4.19.
- British Columbia Representation Agreement Act. 1996. RSBC Chapter 405. Last accessed February 8, 2020. http://www.bclaws.ca/civix/document/id/complete/statreg/96405_01
- Brown, E. L., N. Ruggiano, J. Li, P. J. Clarke, E. S. Kay, and V. Hristidis. 2019. Smartphone-based health technologies for dementia care: Opportunities, challenges, and current practices. Journal of Applied Gerontology : The Official Journal of the Southern Gerontological Society 38 (1):73–91. doi:https://doi.org/10.1177/0733464817723088.
- Browning, M., C. Bigby, and J. Douglas. 2014. Supported decision making: Understanding how its conceptual link to legal capacity is influencing the development of practice. Research and Practice in Intellectual and Developmental Disabilities 1 (1):34–45. doi:https://doi.org/10.1080/23297018.2014.902726.
- Buchanan, A. E., and D. W. Brock. 1990. Deciding for others: The ethics of surrogate decision making. Cambridge: Cambridge University Press.
- Christman, J. 2004. Relational autonomy, liberal individualism, and the social constitution of selves. Philosophical Studies 117 (1/2):143–64. doi:https://doi.org/10.1023/B:PHIL.0000014532.56866.5c.
- Clark, A., and D. Chalmers. 1998. The extended mind. Analysis 58 (1):7–19. doi:https://doi.org/10.1093/analys/58.1.7.
- Dahlberg, C. A., C. P. Cusick, L. A. Hawley, J. K. Newman, C. E. Morey, C. L. Harrison-Felix, and G. G. Whiteneck. 2007. Treatment efficacy of social communication skills training after traumatic brain injury: A randomized treatment and deferred treatment controlled trial. Archives of Physical Medicine and Rehabilitation 88 (12):1561–73. doi:https://doi.org/10.1016/j.apmr.2007.07.033.
- Davidson, G., B. Kelly, G. Macdonald, M. Rizzo, L. Lombard, O. Abogunrin, V. Clift-Matthews, and A. Martin. 2015. Supported decision making: A review of the international literature. International Journal of Law and Psychiatry 38 :61–7. doi:https://doi.org/10.1016/j.ijlp.2015.01.008.
- Devi, N. 2013. Supported decision-making and personal autonomy for persons with intellectual disabilities: Article 12 of the UN convention on the rights of persons with disabilities . The Journal of Law, Medicine & Ethics : A Journal of the American Society of Law, Medicine & Ethics 41 (4):792–806. doi:https://doi.org/10.1111/jlme.12090.
- Dinerstein, R. D. 2012. 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 (2):8–12.
- Faden, R. R., and T. L. Beauchamp. 1986. A history and theory of informed consent. New York: Oxford University Press.
- Fins, J. J., and B. Pohl. 2016. Guardianship and the injured brain: Representation and the rights of patients and families. In Finding consciousness: The neuroscience, ethics, and law of severe brain damage, ed. Walter Sinnott-Armstrong, 246–259. New York: Oxford University Press.
- Francis, L. P., and A. Silvers. 2007. Liberalism and individually scripted ideas of the good: Meeting the challenge of dependent agency. Social Theory and Practice 33 (2):311–34. doi:https://doi.org/10.5840/soctheorpract200733229.
- Francis, L. P. 2011. Understanding autonomy in light of intellectual disability. In Disability and disadvantage, ed. Kimberley Brownlee and Adam Cureton, 200–15. New York: Oxford University Press.
- Ganzini, L., L. Volicer, W. A. Nelson, E. Fox, and A. R. Derse. 2005. Ten myths about decision-making capacity. Journal of the American Medical Directors Association 6 (3 Suppl):S100–S104. doi:https://doi.org/10.1016/j.jamda.2005.03.021.
- Glen, K. B. 2015. Supported decision-making and the human right of legal capacity. Inclusion 3 (1):2–16. doi:https://doi.org/10.1352/2326-6988-3.1.2.
- Glen, K. B. 2012. Changing paradigms: Mental capacity, legal capacity guardianship, and beyond. Columbia Human Rights Law Review 44 :93–169.
- Goering, S. 2002. Beyond the medical model? Disability, formal justice, and the exception for the “profoundly impaired”. Kennedy Institute of Ethics Journal 12 (4):373–88. doi:https://doi.org/10.1353/ken.2002.0025.
- Gooding, P. 2013. Supported decision-making: A rights-based disability concept and its implications for mental health law. Psychiatry, Psychology and Law 20 (3):431–51. doi:https://doi.org/10.1080/13218719.2012.711683.
- Grisso, T., and P. S. Appelbaum. 1998. Assessing competence to consent to treatment: A guide for physicians and other health professionals. New York: Oxford University Press.
- Harding, R., and E. Taşcıoğlu. 2018. Supported decision-making from theory to practice: Implementing the right to enjoy legal capacity. Societies 8 (2):25–17. doi:https://doi.org/10.3390/soc8020025.
- Hatch, M. J., S. A. Crane, and J. G. Martinis. 2015. Unjustified isolation is discrimination: The Olmstead case against overbroad and undue organizational and public guardianship. Inclusion 3 (2):65–74. doi:https://doi.org/10.1352/2326-6988-3.2.65.
- Ireland Assisted Decision-Making (Capacity) Act. 2015. No. 64. Last accessed February 8, 2020. http://www.irishstatutebook.ie/eli/2015/act/64/enacted/en/print#sec1.
- Jones, J. L., K. A. Shogren, E. M. Grandfield, K. L. Vierling, K. L. Gallus, and L. A. Shaw. 2018. Examining predictors of self-determination in adults with intellectual and developmental disabilities. Journal of Developmental and Physical Disabilities 30 (5):601–14. doi:https://doi.org/10.1007/s10882-018-9607-z.
- Kagan, A. 1998. Supported conversation for adults with aphasia: Methods and resources for training conversation partners. Aphasiology 12 (9):816–30. doi:https://doi.org/10.1080/02687039808249575.
- Kim, S. Y., and P. S. Appelbaum. 2006. The capacity to appoint a proxy and the possibility of concurrent proxy directives. Behavioral Sciences & the Law 24 (4):469–78. doi:https://doi.org/10.1002/bsl.702.
- Kittay, E. F. 2011. The ethics of care, dependence, and disability. Ratio Juris 24 (1):49–58. doi:https://doi.org/10.1111/j.1467-9337.2010.00473.x.
- Kohn, N. A., J. A. Blumenthal, and A. T. Campbell. 2012. Supported decision-making: A viable alternative to guardianship. Penn State Law Review 117:1111–57.
- Kukla, R. 2005. Conscientious autonomy: Displacing decisions in health care. The Hastings Center Report 35 (2):34–44. doi:https://doi.org/10.1353/hcr.2005.0025.
- Levy, N. 2007. Rethinking neuroethics in the light of the extended mind thesis. The American Journal of Bioethics 7 (9):3–11. doi:https://doi.org/10.1080/15265160701518466.
- Lysaught, M. T. 2004. Respect: Or, how respect for persons became respect for autonomy. The Journal of Medicine and Philosophy 29 (6):665–80. doi:https://doi.org/10.1080/03605310490883028.
- Mackenzie, C. 2008. Relational autonomy, normative authority and perfectionism. Journal of Social Philosophy 39 (4):512–33. doi:https://doi.org/10.1111/j.1467-9833.2008.00440.x.
- Mackenzie, C., and N. Stoljar, eds. 2000. Relational autonomy: Feminist perspectives on autonomy, agency, and the social self. New York: Oxford University Press.
- Marson, D. C., K. K. Ingram, H. A. Cody, and L. E. Harrell. 1995. Assessing the competency of patients with Alzheimer’s disease under different legal standards. A prototype instrument. Archives of Neurology 52 (10):949–54. doi:https://doi.org/10.1001/archneur.1995.00540340029010.
- Menon, S., V. Entwistle, A. V. Campbell, and J. J. van Delden. 2020. How should the ‘privilege’ in therapeutic privilege be conceived when considering the decision-making process for patients with borderline capacity? Journal of Medical Ethics. Published Online First. doi:https://doi.org/10.1136/medethics-2019-105792.
- National Commission. 1978. The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. In Prepared by The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Last accessed February 8, 2020. https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html
- National Conference of Commissioners on Uniform State Laws. 2017. Uniform guardian, conservatorship and other protective Arrangements Act. Last accessed February 8, 2020. https://www.uniformlaws.org/HigherLogic/System/DownloadDocumentFile.ashx?DocumentFileKey=de9bae9e-0b4e-0781-12b5-f5305569bf19&forceDialog=0
- National Council on Disability. 2019. Turning rights into reality: How guardianship and alternatives impact the autonomy of people with intellectual and developmental disabilities. Last accessed May 12, 2020. https://ncd.gov/sites/default/files/NCD_Turning-Rights-into-Reality_508_0.pdf
- Okonkwo, O.,. H. R. Griffith, K. Belue, S. Lanza, E. Y. Zamrini, L. E. Harrell, J. C. Brockington, D. Clark, R. Raman, and D. C. Marson. 2007. Medical decision-making capacity in patients with mild cognitive impairment. Neurology 69 (15):1528–35. doi:https://doi.org/10.1212/01.wnl.0000277639.90611.d9.
- Osamor, P. E., and C. Grady. 2018. Autonomy and couples: Joint decision-making in healthcare. BMC Medical Ethics 19 (1):1–8. doi:https://doi.org/10.1186/s12910-017-0241-6.
- Petersen, R. C., R. O. Roberts, D. S. Knopman, Y. E. Geda, R. H. Cha, V. S. Pankratz, B. F. Boeve, E. G. Tangalos, R. J. Ivnik, and W. A. Rocca. 2010. Prevalence of mild cognitive impairment is higher in men: The Mayo Clinic Study of Aging. Neurology 75 (10):889–97. doi:https://doi.org/10.1212/WNL.0b013e3181f11d85.
- Ross et al. v. Hatch, Circuit Court for the City of Newport News (2013).
- Salzman, L. 2010. Rethinking guardianship (again): Substituted decision making as a violation of the integration mandated of Title II of the Americans with Disabilities Act. University of Colorado Law Review 81:157–245.
- Shakespeare, T. 2017. The social model of disability. In The disabilities studies reader, ed. J. Davis Lennard, 195–203. 5th ed. New York: Routledge.
- Shalowitz, D. I., E. Garret-Mayer, and D. Wendler. 2006. The accuracy of surrogate decision makers: A systematic review. Archives of Internal Medicine 166 (5):493–7. doi:https://doi.org/10.1001/archinte.166.5.493.
- Sherman, R. B. 1980. Guardianship: Time for a reassessment. Fordham Law Review 49 :350–78.
- Shogren, K. A., M. L. Wehmeyer, H. Lassmann, and A. J. Forber-Pratt. 2017c. Supported decision making: A synthesis of the literature across intellectual disability, mental health, and aging. Education and Training in Autism and Developmental Disabilities 52 (2):144–57.
- Shogren, K. A., M. L. Wehmeyer, H. Seo, J. R. Thompson, R. L. Schalock, C. Hughes, T. D. Little, and S. B. Palmer. 2017b. Examining the reliability and validity of the supports intensity scale–children’s version in children with autism and intellectual disability. Focus on Autism and Other Developmental Disabilities 32 (4):293–304. doi:https://doi.org/10.1177/1088357615625060.
- Shogren, K. A., M. L. Wehmeyer, H. Uyanik, and M. Heidrich. 2017a. Development of the supported decision making inventory system. Intellectual and Developmental Disabilities 55 (6):432–9. doi:https://doi.org/10.1352/1934-9556-55.6.432.
- Silvers, A. 2000. The unprotected: Constructing disability in the context of antidiscrimination law. In Americans with disabilities, ed. Leslie Pickering Francis and Anita Silvers, 126–45. New York: Routledge.
- Silvers, A. Formal Justice. 1998. In Disability, difference, and discrimination, ed. Anita Silvers, David Wasserman, and Mary Mahowald, 13–145. Lanham, MD: Rowman & Littlefield.
- Silvers, A., and L. P. Francis. 2009. Thinking about the good: Reconfiguring liberal metaphysics (or not) for people with cognitive disabilities. Metaphilosophy 40 (3–4):475–98. doi:https://doi.org/10.1111/j.1467-9973.2009.01602.x.
- Smith, E. R., M. Broughton, R. Baker, N. A. Pachana, A. J. Angwin, M. S. Humphreys, L. Mitchell, G. J. Byrne, D. A. Copland, C. Gallois, et al. 2011. Memory and communication support in dementia: Research-based strategies for caregivers. International Psychogeriatrics 23 (2):256–63. doi:https://doi.org/10.1017/S1041610210001845.
- Spreng, R. N., J. Karlawish, and D. C. Marson. 2016. Cognitive, social, and neural determinants of diminished decision-making and financial exploitation risk in aging and dementia: A review and new model. Journal of Elder Abuse & Neglect 28 (4–5):320–44. doi:https://doi.org/10.1080/08946566.2016.1237918.
- Taylor, S., S. J. Wallace, and S. E. Wallace. 2019. High-technology augmentative and alternative communication in poststroke aphasia: A review of the factors that contribute to successful augmentative and alternative communication use. Perspectives of the ASHA Special Interest Groups 4 (3):464–73. doi:https://doi.org/10.1044/2019_PERS-SIG2-2018-0016.
- Texas Estates Code 1357.001. 2015. Supported decision-making agreement act. Last accessed February 8, 2020. https://statutes.capitol.texas.gov/Docs/ES/htm/ES.1357.htm
- Texas Guardianship Abuse, Fraud, and Exploitation Deterrence Program. 2019. Report on guardianship reform. Last accessed February 8, 2020. https://www.txcourts.gov/media/1443314/texas-guardianship-reform_jan-2019.pdf
- Theodorou, E. J. 2018. Supported decision-making in the lone-star state. New York University Law Review 93:973–1013.
- United Nations. 2006. United Nations convention on the rights of persons with disabilities. Last accessed February 8, 2020. https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html
- United Nations. 2014. United Nations General Comment No.1 on CRPD, Article 12: Equal recognition before the law. Prepared by the U.N. Committee on the Rights of Persons with Disabilities. Last accessed February 8, 2020. https://documents-ddsny.un.org/doc/UNDOC/GEN/G14/031/20/PDF/G1403120.pdf?OpenElement
- Verghese, J., R. B. Lipton, M. J. Katz, C. B. Hall, C. A. Derby, G. Kuslansky, A. F. Ambrose, M. Sliwinski, and H. Buschke. 2003. Leisure activities and the risk of dementia in the elderly. New England Journal of Medicine 348 (25):2508–16. doi:https://doi.org/10.1056/NEJMoa022252.
- Walker, H. M., C. Calkins, M. L. Wehmeyer, L. Walker, A. Bacon, S. B. Palmer, G. S. Jesien, M. A. Nygren, T. Heller, G. S. Gotto, et al. 2011. A social-ecological approach to promote self-determination. Exceptionality 19 (1):6–18. doi:https://doi.org/10.1080/09362835.2011.537220.
- Wendell, S. 1989. Toward a feminist theory of disability. Hypatia 4 (2):104–24. doi:https://doi.org/10.1111/j.1527-2001.1989.tb00576.x.
- Westlund, A. C. 2009. Rethinking relational autonomy. Hypatia 24 (4):26–49. doi:https://doi.org/10.1111/j.1527-2001.2009.01056.x.
- Wright, J. L. 2010. Guardianship for your own good: Improving the well-being of respondents and wards in the USA. International Journal of Law and Psychiatry 33 (5–6):350–68. doi:https://doi.org/10.1016/j.ijlp.2010.09.007.
- Wright, M. S. 2019. Dementia, healthcare decision making, and disability law. The Journal of Law, Medicine & Ethics : A Journal of the American Society of Law, Medicine & Ethics 47 (4_suppl):25–33. doi:https://doi.org/10.1177/1073110519898040.
- Wright, M. S. 2020. Dementia, autonomy, and supported healthcare decision making. Maryland Law Review 79 (2):257–324.