Abstract
This chapter analyses the practice of support for decision making with adults with intellectual disability or acquired brain injury, whom we refer to as people with cognitive disabilities. It reviews propositions about the advantages of the concept of supported decision making and proposals to reform legislative schemes governing decision making for people with cognitive disabilities. In doing so, it highlights the role of values in driving change and the relative absence of evidence about practice. Drawing on a program of empirical Australian research, factors associated with effective decision support for people with cognitive disabilities and challenges faced by supporters are reviewed. Finally, we describe the La Trobe Support for Decision Making Practice Framework which can be applied flexibly across diverse contemporary legal contexts and is the first evidence-based guide to support for decision making.
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References
Abreu, B. C., Zhang, L., Seale, G., Primeau, L., & Jones, J. S. (2002). Interdisciplinary meetings: Investigating the collaboration between persons with brain injury and treatment teams. Brain Injury, 16, 691–704. https://doi.org/10.1080/02699050210128942
Agran, M., Storey, K., & Krupp, M. (2010). Choosing and choice making are not the same: Asking “what do you want for lunch?” is not self-determination. Journal of Vocational Rehabilitation, 33, 77–88. https://doi.org/10.3233/JVR-2010-0517
Antaki, C., Finlay, W., & Walton, C. (2009). Choices for people with intellectual disabilities: Official discourse and everyday practice. Journal of Policy and Practice in Intellectual Disabilities, 6, 260–266. https://doi.org/10.1111/j.1741-1130.2009.00230.x
Antaki, C., Finlay, W., Walton, C., & Pate, L. (2008). Offering choices to people with intellectual disabilities: An interactional study. Journal of Intellectual Disability Research, 52, 1165–1175. https://doi.org/10.1111/j.1365-2788.2008.01101.x
Arstein-Kerslake, A. (2017). Restoring voice to people with cognitive disabilities: Realizing the right to equal recognition before the law. Cambridge, UK: Cambridge University Press.
Bach, M. (2017). Inclusive citizenship: Refusing the construction of “cognitive foreigners” in neo-liberal times. Research and Practice in Intellectual and Developmental Disabilities, 4, 4–25. https://doi.org/10.1080/23297018.2017.1306794
Bach, M., & Kerzner, L. (2010). A new paradigm for protecting autonomy and the right to legal capacity. Ontario: Law Commission of Ontario. Retrieved from: https://www.lco-cdo.org/wp-content/uploads/2010/11/disabilities-commissioned-paper-bach-kerzner.pdf
Beadle-Brown, J., Hutchinson, A., & Whelton, B. (2012). Person-centred active support–increasing choice, promoting independence and reducing challenging behaviour. Journal of Applied Research in Intellectual Disabilities, 25, 291–307. https://doi.org/10.1111/j.1468-3148.2011.00666.x
Bigby, C. (2008). Known well by no one. Trends of the informal social networks of people with intellectual disability five years after moving to the community. Journal of Intellectual and Developmental Disabilities, 33, 148–157. https://doi.org/10.1080/13668250802094141
Bigby, C. (2016). Commentary by Christine Bigby on “Reducing the inequality of luck: Keynote address at the 2015 Australasian Society for Intellectual Disability National Conference” (Bonyhady, 2016). Research and Practice in Intellectual and Developmental Disabilities, 3, 134–139. https://doi.org/10.1080/23297018.2016.1230835
Bigby, C., Bowers, B., & Webber, R. (2011). Planning and decision making about the future care of older group home residents and transition to residential aged care. Journal of Intellectual Disability Research, 55, 777–789. https://doi.org/10.1111/j.1365-2788.2010.01297.x
Bigby, C., & Douglas, J. (2015). Support for decision making – A practice framework. Living with Disability Research Centre, La Trobe University. http://hdl.handle.net/1959.9/556875
Bigby, C., Douglas, J., Carney, T., Then, S., Wiesel, I., & Smith, E. (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, 222–240. https://doi.org/10.1002/ajs4.19
Bigby, C., Douglas, J., & Hamilton, L. (2018). Overview of literature about enabling risk for people with cognitive disabilities in context of disability support services. Melbourne, VIC: La Trobe University. Retrieved from: http://hdl.handle.net/1959.9/563495
Bigby, C., Douglas, J.M., & Vassallo, S. (2018). Enabling risk: Putting positives first. An online learning resource for disability support workers. Retrieved from: www.enablingriskresource.com.au
Bigby, C., Douglas, J., & Vassallo, S. (2019). The La Trobe Support for Decision Making Practice Framework. An online learning resource. Retrieved from: www.supportfordecisionmakingresource.com.au
Bigby, C., & Frawley, P. (2010). Social work and intellectual disability: Working for change. London, UK: Palgrave Macmillan.
Bigby, C., & Knox, M. (2009). “I want to see the Queen”: Experiences of service use by ageing people with an intellectual disability. Australian Social Work, 62, 216–231. https://doi.org/10.1080/03124070902748910
Bigby, C., Webber, R., & Bower, B. (2015). Sibling roles in the lives of older group home residents with intellectual disability: Working with staff to safeguard wellbeing. Australian Social Work, 68, 453–468. https://doi.org/10.1080/0312407X.2014.950678
Bigby, C., Whiteside, M., & Douglas, J. (2017). Providing support for decision making to adults with intellectual disability: perspectives of family members and workers in disability support services. Journal of Intellectual and Developmental Disability. Advance online publication. https://doi.org/10.3109/13668250.2017.1378873
Bigby, C., Whiteside, M., & Douglas, M. (2015). Supporting people with cognitive disabilities in decision making – Processes and dilemmas. Melbourne, VIC: Living with Disability Research Centre, http://hdl.handle.net/1959.9/319333
Boundy, M., & Fleischner, B. (2013). Supported Decision Making Instead of Guardianship: An international overview Washington: TASC [Training & Advocacy Support Center]. National Disability Rights Network.
Bowey, L., & McGlaughlin, A. (2005). Assessing the barriers to achieving genuine housing choice for adults with a learning disability: The views of family carers and professionals. British Journal of Social Work, 35, 139–148. https://doi.org/10.1093/bjsw/bch167
Brown, I., & Brown, R. I. (2009). Choice as an aspect of quality of life for people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 6, 11–18.
Browning, M., Bigby, C., & Douglas, J. (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, 34–45. https://doi.org/10.1080/23297018.2014.902726
Browning, M. J. (2018). Developing an understanding of supported decision making practice in Canada: The experiences of people with intellectual disabilities and their supporters. (Doctoral thesis, La Trobe University, Melbourne, Australia).
Burgen, B. (2010). Women with cognitive impairment and unplanned or unwanted pregnancy: A 2-year audit of women contacting the pregnancy advisory service. Australian Social Work, 63, 18–34. https://doi.org/10.1080/03124070903471033
Caldwell, J. (2010). Leadership development of individuals with developmental disabilities in the self-advocacy movement. Journal of Intellectual Disability Research, 54, 1004–1014. https://doi.org/10.1111/j.1365-2788.2010.01326.x
Carey, G., Malbon, E., Reeders, D., Kavanagh, A., & Llewllyn, G. (2017). Redressing or entrenching social and health inequities through policy implementation? Examining personalised budgets through the Australian National Disability Insurance Scheme. International Journal for Equity in Health, 16(192). https://doi.org/10.1186/s12939-017-0682-z.
Carney, T. (2013). Participation and service access rights for people with intellectual disability: A role for law. Journal of Intellectual and Developmental Disability, 38, 59–69. https://doi.org/10.3109/13668250.2012.738810
Carney, T. (2017). Supported decision making in Australia: Meeting the challenge of moving from capacity to capacity-building? Law in Context, 35(2), 44–63.
Carney, T., & Beaupert, F. (2013). Public and private bricolage-challenges balancing law, services & civil society in advancing CRPD supported decision making. The University of New South Wales Law Journal, 36, 175–201.
Clegg, J., & Bigby, C. (2017). Debates about dedifferentiation. Research and Practice in Intellectual and Developmental Disabilities, 4, 80–97. https://doi.org/10.1080/23297018.2017.1309987
Committee on the Rights of Persons with Disabilities. (2014). General comment No. 1, Article 12: Equal recognition before the law. Geneva, Switzerland: Author.
Conder, J., Mirfin-Veitch, B., Sanders, J., & Munford, R. (2011). Planned pregnancy, planned parenting: Enabling choice for adults with a learning disability. British Journal of Learning Disabilities, 39, 105–112. https://doi.org/10.1111/j.1468-3156.2010.00625.x
Craig, P., Dieppe, P., Macintyre, S., Michie, S., Nazareth, I., & Petticrew, M. (2008). Developing and evaluating complex interventions: The new medical research council guidance. British Medical Journal, 33, 1655. https://doi.org/10.1136/bmj.a1655
Crisp, W. (2018). “She proudly announced she has a boyfriend from her day placement and wants him to sleep over.” The grounded theory of the process of guiding self-determination. (Doctoral Thesis, La Trobe University, Melbourne, Australia).
Douglas, J., & Bigby, C. (2018). Development of an evidence-based practice framework to guide support for decision making. Disability and Rehabilitation, 391–392. https://doi.org/10.1080/09638288.2018.1498546
Dukes, E., & McGuire, B. E. (2009). Enhancing capacity to make sexuality-related decisions in people with an intellectual disability. Journal of Intellectual Disability Research, 53, 727–734. https://doi.org/10.1111/j.1365-2788.2009.01186.x
Dunn, M., Clare, I., & Holland, A. (2010). Living ‘a life like ours’: Support workers’ accounts of substitute decision-making in residential care homes for adults with intellectual disabilities. Journal of Intellectual Disability Research, 54, 144–160. https://doi.org/10.1111/j.1365-2788.2009.01228.x
Ellem, K., O’Connor, M., Wilson, J., & Williams, S. (2013). Social work with marginalised people who have a mild or borderline intellectual disability: Practicing gentleness and encouraging hope. Australian Social Work, 66, 56–71. https://doi.org/10.1080/0312407X.2012.710244
Espiner, D., & Hartnett, F. M. (2012). ‘I felt I was in control of the meeting’: Facilitating planning with adults with an intellectual disability. British Journal of Learning Disabilities, 40, 62–70. https://doi.org/10.1111/j.1468-3156.2011.00684.x
Ferguson, M., Jarrett, D., & Terras, M. (2011). Inclusion and healthcare choices: The experiences of adults with learning disabilities. British Journal of Learning Disabilities, 39, 73–83. https://doi.org/10.1111/j.1468-3156.2010.00620.x
Gooding, P. (2017). A new era for mental health law and policy: Supported decision-making and the UN convention on the rights of persons with disabilities. Cambridge, UK: Cambridge University Press.
Gordon, R. (2000). The emergence of assisted (supported) decision-making in the Canadian law of adult guardianship and substitute decision-making. International Journal of Law and Psychiatry, 23, 61–77. https://doi.org/10.1016/S0160-2527(99)00034-5
Hawkins, R., Redley, M., & Holland, A. (2011). Duty of care and autonomy: How support workers managed the tension between protecting service users from risk and promoting their independence in a specialist group home. Journal of Intellectual Disability Research, 55, 873–884. https://doi.org/10.1111/j.1365-2788.2011.01445.x
Heller, T., Miller, A. B., Hsieh, K., & Sterns, H. (2000). Later-life planning: Promoting knowledge of options and choice-making. Mental Retardation, 38, 395–406. https://doi.org/10.1352/0047-6765(2000)038<0395:LPPKOO>2.0.CO;2
Hodges, J. S., & Luken, K. (2006). Stakeholders’ perceptions of planning needs to support retirement choices by persons with developmental disabilities. Therapeutic Recreation Journal, 40, 94–106.
Jilke, S. (2015). Choice and equality: Are vulnerable citizens worse off after liberalization reforms? Public Administration, 93, 68–85. https://doi.org/10.1111/padm.12102
Kanter, A. S., & Tolub, Y. (2017). The fight for personhood, legal capacity, and equal recognition under law for people with disabilities in Israel and beyond. Cardozo Law Review, 39, 557–610.
Khemka, I. (2000). Increasing independent decision-making skills of women with mental retardation in simulated interpersonal situations of abuse. American Journal on Mental Retardation, 105, 387–401. https://doi.org/10.1352/0895-8017(2000)105<0387:IIDSOW>2.0.CO;2
Khemka, I., Hickson, L., & Reynolds, G. (2005). Evaluation of a decision-making curriculum designed to empower women with mental retardation to resist abuse. Journal Information, 110, 193–204. https://doi.org/10.1352/0895-8017(2005)110<193:EOADCD>2.0.CO;2
Kirkendall, A., Linton, K., & Farris, S. (2016). Intellectual disabilities and decision making at end of life: A literature review. Journal of Applied Research in Intellectual Disabilities, 30, 982–994. https://doi.org/10.1111/jar.12270
Kittay, F., & Carlson, M. (2010). Cognitive disability and its challenge to moral philosophy. Chichester, England: Wiley-Blackwell.
Kjellberg, A. (2002). More or less independent. Disability & Rehabilitation, 24, 828–840. https://doi.org/10.1080/09638280210131745
Knox, L. (2016). The experience of being supported to participate in decision making after severe traumatic brain injury. (Doctoral Thesis, La Trobe University, Melbourne, Australia). Retrieved from: http://hdl.handle.net/1959.9/559896
Knox, L., Douglas, J., & Bigby, C. (2013). Whose decision is it anyway? How clinicians support decision-making participation after acquired brain injury. Disability & Rehabilitation, 35, 1926–1932. https://doi.org/10.3109/09638288.2013.766270
Knox, L., Douglas, J., & Bigby, C. (2015). “The biggest thing is trying to live for two people”: Spousal experiences of supporting decision-making participation for partners with TBI. Brain Injury, 29, 747–757. https://doi.org/10.3109/02699052.2015.1004753
Knox, L., Douglas, J., & Bigby, C. (2016a). Becoming a decision-making supporter for someone with acquired cognitive disability following TBI. Research and Practice in Intellectual and Developmental Disabilities, 3, 12–21. https://doi.org/10.1080/23297018.2015.1077341
Knox, L., Douglas, J., & Bigby, C. (2016b). “I won’t be around forever”: Understanding the decision-making experiences of adults with severe TBI and their parents. Neuropsychological Rehabilitation, 26, 236–260. https://doi.org/10.1080/09602011.2015.1019519
Knox, L., Douglas, J., & Bigby, C. (2017). “I’ve never been a yes person”: Decision-making participation and self-conceptualisation after severe traumatic brain injury. Disability Rehabilitation, 39, 2250–2260. https://doi.org/10.1080/09638288.2016.1219925
Kohn, N. A., & Blumenthal, J. A. (2014). A critical assessment of supported decision-making for persons aging with intellectual disabilities. Disability and Health Journal, 7, 40–43. https://doi.org/10.1016/j.dhjo.2013.03.005
Kohn, N. A., Blumenthal, J. A., & Campbell, A. T. (2014). Supported decision-making: A viable alternative to guardianship? Penn State Law Review, 177, 1111–1157.
Mackenzie, C., & Stoljar, N. (2000). Autonomy refigured. In C. Mackenzie & N. Stoljar (Eds.), Relational autonomy. Feminist perspectives on autonomy, agency, and the social self (pp. 3–31). New York, NY: Oxford University Press.
Mill, A., Mayes, R., & McConnell, D. (2010). Negotiating autonomy within the family: The experiences of young adults with intellectual disabilities. British Journal of Learning Disabilities, 38, 194–200. https://doi.org/10.1111/j.1468-3156.2009.00575.x
Morris, J. (2001). Impairment and disability: Constructing an ethics of care that promotes human rights. Hypatia, 16(4), 1–16.
National Disability Insurance Scheme Act 2013 (Cth.) (Austl.). Retrieved from: https://www.legislation.gov.au/Details/C2013A00020
Neely-Barnes, S., Graff, J. C., Marcenko, M., & Weber, L. (2008). Family decision making: Benefits to persons with developmental disabilities and their family members. Intellectual and Developmental Disabilities, 46, 93–105. https://doi.org/10.1352/0047-6765(2008)46[93:FDMBTP]2.0.CO;2
Nota, L., Ferrari, L., Soresi, S., & Wehmeyer, M. (2007). Self-determination, social abilities and the quality of life of people with intellectual disability. Journal of Intellectual Disability Research, 51, 850–865.
Nunnelley, S. (2015). Personal support networks in practice and theory: Assessing the implications for supported decision-making law. Ontario: Law Commission of Ontario. Retrieved from: https://www.lco-cdo.org/wp-content/uploads/2015/04/capacity-guardianship-commissioned-paper-nunnelley.pdf
O’Connor, M. (2014). The National Disability Insurance Scheme and people with mild intellectual disability: Potential pitfalls for consideration. Research and Practice in Intellectual and Developmental Disabilities, 1, 17–23. https://doi.org/10.1080/23297018.2014.908815
Pilnick, A., Clegg, J., Murphy, E., & Almack, K. (2010). Questioning the answer: Questioning style, choice and self-determination in interactions with young people with intellectual disabilities. Sociology of Health & Illness, 32, 415–436. https://doi.org/10.1111/j.1467-9566.2009.01223.x
Reinders, J. (2002). The good life for citizens with intellectual disability. Journal of Intellectual Disability Research, 46, 1–5. https://doi.org/10.1046/j.1365-2788.2002.00386.x
Renblad, K. (2003). How do people with intellectual disabilities think about empowerment and information and communication technology (ICT)? International Journal of Rehabilitation Research, 26, 175–182.
Rossow-Kimball, B., & Goodwin, D. (2009). Self-determination and leisure experiences of women living in two group homes. Adapted Physical Activity Quarterly, 26, 1–20.
Schelly, D. (2008). Problems associated with choice and quality of life for an individual with intellectual disability: A personal assistant’s reflexive ethnography. Disability & Society, 23, 719–732. https://doi.org/10.1080/09687590802469206
Series, L. (2015). The development of disability rights under international law: From charity to human rights. Disability & Society, 30, 1590–1593. https://doi.org/10.1080/09687599.2015.1066975
Shakespeare, T. (2006). Disability rights and wrongs. Abingdon, England: Routledge.
Silvers, A., & Francis, L. (2009). Thinking about the good: Reconfiguring liberal metaphysics (or not) for people with cognitive disabilities. Metaphilosophy, 40, 475–498.
Sinclair, C., Field, S., Williams, K., Blake, M., Bucks, R., Auret, K., … Kurrle, S. (2018). Supporting decision-making: A guide for people living with dementia, family members and carers. Sydney, NSW: Cognitive Decline Partnership Centre. Retrieved from: http://sydney.edu.au/medicine/cdpc/documents/resources/SDM_Handbook_Online_Consumers-ReducedSize.pdf
Sowney, M., & Barr, O. (2007). The challenges for nurses communicating with and gaining valid consent from adults with intellectual disabilities within the accident and emergency care service. Journal of Clinical Nursing, 16, 1678–1686. https://doi.org/10.1111/j.1365-2702.2006.01642.x
Then, S., Carney, T., Bigby, C., & Douglas, J. (2018). Supporting decision-making of adults with cognitive disabilities: the role of Law Reform Agencies – Recommendations, rationales and influence. International Journal of Law and Psychiatry. https://doi.org/10.1016/j.ijlp.2018.09.001.
Then, S.-N. (2013). Evolution and innovation in guardianship laws: Assisted decision-making. Sydney Law Review, 35, 133–166.
Timmons, J. C., Hall, A. C., Bose, J., Wolfe, A., & Winsor, J. (2011). Choosing employment: Factors that impact employment decisions for individuals with intellectual disability. Intellectual and Developmental Disabilities, 49, 285–299. https://doi.org/10.1352/1934-9556-49.4.285
Victorian Medical Treatment Planning and Decisions Act 2016 (Vic.) (Austl.)
Watson, J. (2016). The right to supported decision-making for people rarely heard. (Doctoral thesis, Deakin University, Melbourne, Australia). Retrieved from http://dro.deakin.edu.au/eserv/DU:30083812/watson-theright-2016A.pdf
Watson, J., Wilson, E., & Hagiliassis, N. (2017). Supporting end of life decision making: Case studies of relational closeness in supported decision making for people with severe or profound intellectual disability. Journal of Applied Research in Intellectual Disabilities, 30, 1022–1034. https://doi.org/10.1111/jar.12393
Webb, J., & Stanton, M. (2009). Better access to primary healthcare for adults with learning disabilities: Evaluation of a group programme to improve knowledge and skills. British Journal of Learning Disabilities, 37, 116–122. https://doi.org/10.1111/j.1468-3156.2008.00527.x
Wong, S. J. (2010). Duties of justice to citizens with cognitive disabilities. Chichester, England: John Wiley & Sons.
World Health Organisation. (2001). International classification of functioning, disability and health: ICF. Geneva, Switzerland: Author.
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Bigby, C., Douglas, J. (2020). Supported Decision Making. In: Stancliffe, R.J., Wehmeyer, M.L., Shogren, K.A., Abery, B.H. (eds) Choice, Preference, and Disability. Positive Psychology and Disability Series. Springer, Cham. https://doi.org/10.1007/978-3-030-35683-5_3
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