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![23La Trobe University
Western Australia's Individualised Services. Supported Decision Making Project Resources 2014 [cited 2016 3rd August]. Available
from: http://waindividualisedservices.org.au/supported-decision-making-project-resources/.
Carers NSW. Supported Decision Making workshops for 14-18 year olds with disability, their families and/or carers. Sydney: The
Department of Family and Community Services (FACS) and Ageing, Disability and Home Care (ADHC), 2016.
The NSW Public Guardian, NSW Trustee and Guardian. Supported Decision Making Project 2016 [cited 2016 3rd August]. Available
from: http://www.publicguardian.justice.nsw.gov.au/Documents/SDM%20Project%20Factsheet%202016.pdf.
Other resources
Convention on the Rights of Persons with Disabilities, (2006).
Victorian Law Commission. Guardianship: final report 24. 2012.
QLD Law Reform Commission. A Review of Queensland’s Guardianship Laws. Brisbane: Law Reform Commission, 2010.
ALRC. Quality, Capacity and Disability in Commonwealth Laws: Final Report. Sydney: 2014.
National Disability Insurance Scheme Act 2013, (2013).
ALRC. Quality, Capacity and Disability in Commonwealth Laws: Final Report. Sydney: 2014.
Nunnelley S. Personal Support Networks in Practice and Theory: Assessing the implications for supported decision-making law.
Toronto: Law Commission of Ontario, 2015.](https://image.slidesharecdn.com/bigbynswnciddecisionmakingsept2016-161017232600/85/Bigby-nsw-ncid-decision-making-sept-2016-23-320.jpg)
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Bigby nsw ncid decision making sept 2016
- 1. latrobe.edu.au CRICOS Provider00115M Support for decision making: Development of an evidence-based practice framework for supporters Christine Bigby and Jacinta Douglas Living with Disability Research Centre
- 2. 2La Trobe University NewParadigm of Supported Decision Making Premise: everyone has the right to participate in decision making People must be provided with the support they need to make, communicate and participate in decisions which affect their lives. National Decision Making Principles (2014)
- 3. 3La Trobe University DecisionMaking Support in Australia Legal reform for supported decision making is pending in Australia Reform would give, for example, legal standing to supporters – recognise shared decision making Many elements are not new and have begun to be put into practice We use the term support for decision making to avoid confusion
- 4. 4La Trobe University DeliveringDecision Making Support - WHO ? Decision Making Support Skill development Legal schemes (Canadian representation agreements and micro boards) Informal reliance on families and others Advocacy organisations Good everyday staff practice
- 5. 5La Trobe University OurAims - the Practice - How ? Develop an evidence based framework to guide the practice of decision-making supporters ̶ Understand the experience o people who receive support o people who provide support ̶ Identify factors that underpin the delivery of effective decision-making support ̶ Design a framework with associated resources o pilot, review and revise ̶ Evaluate the framework and associated resources o rigorous trial
- 6. 6La Trobe University Supportfor Decision Making Sufficient and effective support ̶ is tailored to the individual and the situation ̶ varies in type and intensity depending on the decision ̶ compensates for the person’s difficulties with decision making through o changed expectations of others o development of their skills and experience o support to express their will and preferences o sometimes interpretation of their will and preferences ̶ is dependent on the skills of the decision-making supporter
- 7. 7La Trobe University Challengesof Providing Support Huge potential for supporters to shape decisions Supporters struggle with ̶ remaining neutral ̶ taking a positive approach to risk ̶ dealing with conflict Need for support/assistance
- 8. 8La Trobe University Somethingto start you thinking Supporters often have good intentions but ...
- 9. 9La Trobe University TheProcess of Support for Decision Making 7 steps Informed by 3 principles Delivered through strategies tailored to the person
- 10. 10La Trobe University Knowthe Person
- 11. 11La Trobe University Identifyingand Describing the Decision Cumulative and embedded
- 12. 12La Trobe University Understandingthe persons will and preference ‘blue sky’ step - think as widely as possible - consider all the possible options that need to be explored and their consequences - explore the person’s preferences about all the things that will be encompassed in the decision
- 13. 13La Trobe University Refiningthe decision and taking account of constraints Preferences are prioritized, refined and shaped by constraints - time - money - impact on other people - safety. Ways are found to ensure the decision will be implemented - potential constraints might be questioned or creatively managed
- 14. 14La Trobe University Decidingthe type of decision – is there a need for a formal process Support for - self-generated decision - shared decision o may resemble an informal substitute decision - a more formal process of making a substitute decision o due to the anticipated harm to themselves or others The same person may participate at different times in making self-generated, shared or substitute decisions with support.
- 15. 15La Trobe University Reachingthe decision and associated decisions Reflect prioritised preferences as closely as possible - Identify consequential decisions that will flow from a major decision - In supporting each of these smaller decisions the support for decision making cycle loops back to step 1 and is repeated Depending on the decision - it may be formally recorded and communicated to others involved in the person’s life who will support its implementation.
- 16. 16La Trobe University Implementingthe decision & seeking advocates if necessary Implementation may not rest with the decision making supporter - May need advocates to support implementation of the decision o Others in a person’s circle may shift into an advocacy role The processes of support do not stop here - consequential decisions - unrelated decisions as their life unfolds.
- 17. 17La Trobe University Strategies:general considerations
- 18. 18La Trobe University TheProcess of Support for Decision Making
- 19. 19La Trobe University TheProcess of Support for Decision Making New ARC Linkage study Evaluate the framework and the training and mentoring support designed for family members, direct care staff, appointed guardians and decision making facilitators Please contact us for more information and to be involved (Bigby, Douglas, Carney, Wiesel, Shih-Ning, Chesterman, & Cook)
- 20. 20La Trobe University Lastwords… Implications for NDIS Decision making support is part of reasonable and necessary disability related needs – over long term, rather than one off short term event Decision making support is different from short term advocacy - case management - planning Everyone (planners and case managers) need to recognise when support for decision making is happening – is it working well or is there a need to look further for good support Need to tackle wider community/staff/family expectations and understanding about support for decision making Big gap in understanding how to deliver support about program logic, costs and benefits -some indication high resource intensity required But find ways to support and resource decision making supporters Focus on the practice of How if the benefits are going to be realised – too often good policy fails at the practice stage
- 21. 21La Trobe University Referencesand Resources Virtual Special Issue of Research and Practice in Intellectual and Developmental Disabilities on support for decision making – free access to 10 papers http://explore.tandfonline.com/page/med/rapidd-supported-decision-making Bigby C, Douglas J. Support for Decision making - A practice framework Bundoora, Melbourne: La Trobe University; 2015. http://hdl.handle.net/1959.9/556872 Bigby, C., Douglas, J., & Hamilton, L. (2016). Support for decision making: A guide for trainers. Living with Disability Research Centre, La Trobe University. Electronic copies of this training manual are available from the La Trobe University Research Repository http://hdl.handle.net/1959.9/556872 Douglas J, Bigby C, Knox L, Browning M. (2015) Factors that underpin the delivery of effective decision-making support for people with cognitive disability. Research and Practice in Intellectual and Developmental Disabilities 2:37-44. Knox L, Douglas J, Bigby C. (2015). Becoming a decision-making supporter for someone with acquired cognitive disability following traumatic brain injury. Research and Practice in Intellectual and Developmental Disabilities. 2015:1-10. Knox L, Douglas J, Bigby C. (2013). Whose decision is it anyway? How clinicians support decision-making participation after acquired brain injury. Disability and rehabilitation. 35:1926-32. Knox, L., J. Douglas & C. Bigby (2016). "I won’t be around forever”: Understanding the decision-making experiences of adults with severe TBI and their parents." Neuropscychological rehabilitation, 26,2, 236-260 http://dx.doi.org/10.1080/09602011.2015.1019519 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 Disability. 1(1), 34- 45. doi: 10.1080/23297018.2014.902726
- 22. 22La Trobe University Knox,L., Douglas, J., Bigby, C. (in press, accepted 31 July 2016) “I’ve never been a yes person”: Decision-making participation and self-conceptualisation after severe traumatic brain injury. Disability and Rehabilitation Knox, L., Douglas, J & C. Bigby (2015). “The biggest thing is trying to live for two people”: The experience of making decisions within spousal relationships after severe traumatic brain injury." Brain Injury, 29, 6, 745-757 DOI:10.3109/02699052.2015.1004753 Bigby, C., Whiteside, M, Douglas, J. (under review) Supporting decision making of adults with intellectual disabilities: Perspectives of family members and workers in disability support services Journal of Intellectual and Developmental Disability J, Carney T, Wiesel I, Then S. Effective Decision Making Support for People with Cognitive Disability. Victoria, New South Wales, and Queensland: Australian Research Council; 2015. 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. LIDs. Living with disability research centre annual report. Melbourne: La Trobe University, 2013-14. http://www.latrobe.edu.au/lids Pilot project evaluations Wallace M. Evaluation of the Supported Decision-Making Project. Office of the Public Advocate (South Australia), 2012. Community Matters. HCSCC supported decision making program 2014-15: evaluation report. Adelaide: Health and Community Services Commissioner’s office, South Australia, 2015. Calnin G. Evaluation of Supported Decision-Making Pilot Project Report. The Victorian Office of the Public Advocate (OPA), 2016. Burgen B. Reflections on the Victorian Office of the Public Advocate supported decision-making pilot project. Research and Practice in Intellectual and Developmental Disabilities. 2016:1-17. Westwood Spice. My life, my decision: An independent evaluation of the Supported Decision Making Pilot. for the Department of Family and Community Services (New South Wales), 2015. ADACAS Advocacy. Spectrums of Support: A Report on a project Exploring Supported Decision Making for People with Disability in the ACT. ACT Disability, Aged Care and Carer Advocacy Service, 2013.
- 23. 23La Trobe University WesternAustralia's Individualised Services. Supported Decision Making Project Resources 2014 [cited 2016 3rd August]. Available from: http://waindividualisedservices.org.au/supported-decision-making-project-resources/. Carers NSW. Supported Decision Making workshops for 14-18 year olds with disability, their families and/or carers. Sydney: The Department of Family and Community Services (FACS) and Ageing, Disability and Home Care (ADHC), 2016. The NSW Public Guardian, NSW Trustee and Guardian. Supported Decision Making Project 2016 [cited 2016 3rd August]. Available from: http://www.publicguardian.justice.nsw.gov.au/Documents/SDM%20Project%20Factsheet%202016.pdf. Other resources Convention on the Rights of Persons with Disabilities, (2006). Victorian Law Commission. Guardianship: final report 24. 2012. QLD Law Reform Commission. A Review of Queensland’s Guardianship Laws. Brisbane: Law Reform Commission, 2010. ALRC. Quality, Capacity and Disability in Commonwealth Laws: Final Report. Sydney: 2014. National Disability Insurance Scheme Act 2013, (2013). ALRC. Quality, Capacity and Disability in Commonwealth Laws: Final Report. Sydney: 2014. Nunnelley S. Personal Support Networks in Practice and Theory: Assessing the implications for supported decision-making law. Toronto: Law Commission of Ontario, 2015.
- 24. Thank you latrobe.edu.au CRICOSProvider 00115M Contacts: J.Douglas@latrobe.edu.au C.Bigby@latrobe.eu.au
Editor's Notes
- #10 Can be applied by supporters of people with cognitive disabilities within current legal frameworks in Australia
- #11 Step 1. Knowing the person Support for decision making is person centred. As Figure 4 illustrates supporters need to ‘know’ the person well. This means knowing all aspects of the person and having a sense of the person’s self-identity or self- concept (Who I am and how I feel about myself). This usually encompasses knowing about – their attributes and style – personal characteristics – likes, dislikes, preferences - skills, the effect on their understanding of their specific cognitive impairments – social connections - history and personal story. Part of knowing a person also means understanding the way they are seen by others in their network including the various ‘experts’ who have been involved in their life. Knowledge of what defines the person provides the conceptual context for understanding their will and preference .
- #12 Understanding and sorting decisions Decisions described in different ways the scope who is involved constraining influences time frame consequences or outcomes Sorted by scope into bigger and smaller decisions. smaller day-to-day - personal care, engagement with others, community activities. bigger - more enduring things, décor of home, where to live longer time frame, at the interface between systems or settings, involve multiple supporters. Decisions embedded in each other - cumulative Step 2 Identifying and describing the decision. It is important to identify and describe the decision that is to be made. The nature of the primary decision such as where to live may be clear. However, describing the decision helps to see its features in full: its scope (how much will it impact on a person’s life and the other decisions that might flow from it); who should be involved in helping the person to make the decision or the formal organisations that may be involved (such as the criminal justice system or health system); the constraining factors that will help shape the decision, or may be taken for granted and that may need to be challenged by supporters; the time frame to make the decision, and; the potential consequences of choosing one option over another. Describing a decision helps to focus attention on the core issues and helps to guide who to involve or has the necessary knowledge. For bigger decisions it will also identify tensions that might arise, constraining factors that if tackled early might be amenable to change and the potential flow on effects of this decision to other parts of a person’s life that will have to be considered.
- #13 Step 3 Understanding a person’s will and preferences about the decision This is a ‘blue sky’ step in the process of decision making support. The person and their supporters think as widely as possible about the decision, all the possible options that need to be explored, the person’s preferences about all the things that will be encompassed in the decision, and consequences of different options. Everyone has preferences. They stem from experiences, knowledge and available information, personal values or cultural norms. They are communicated in many ways – through words, signs, gestures, expressions, behavior, actions or lack thereof. For some people preferences have to be interpreted by supporters based on their knowledge of the person, or garnered from the perspectives of others who know the person well or in a different context. At times there may be apparent conflict between immediate and longer term preferences that have to be weighed up. These are described by Jane Tracy (2015) who talks about her son’s longer term preference for independence but his dislike of the medical treatment that might support his independence. In this step preferences and options considered should not be constrained by parameters imposed by things such as resources or risks. This step in bigger decisions could be seen as similar to the dreaming or aspirational elements of some approaches to person centered planning but more focused on a specific decision.
- #14 Nevertheless a decision is more than a dream or hopeful statement in a plan. It must be implementable. In this step preferences are prioritized, refined and shaped by constraints such as time, money, impact on other people, and safety. Ways are found to ensure the decision will be implemented, and potential constraints might be questioned or creatively managed.
- #15 This step distills the knowledge gained in earlier steps about the decision, preferences, priorities, constraints and consequences. Based on the knowledge accumulated it will be clearer whether the combination of this specific decision and the person’s own skills means they can be supported to make a self-generating decision or a shared decision, which may resemble an informal substitute decision, or, whether due to the anticipated harm to themselves or others they need support for a more formal process of making a substitute decision. If there is conflict about reaching a shared decision then at this stage it may be appropriate to seek a more formal decision making process such as application for a guardian. If a person already has a guardian in place, then at this stage the decision making supporter should reach out to the guardian providing them with all the relevant information so they are in the best possible position to make a decision that reflects the person’s will and preference.
- #16 At this step, the decision is made to reflect prioritised preferences as closely as possible. The many consequential decisions that will flow from a major decision will become clearer. In supporting each of these smaller decisions the support for decision making cycle loops back to step 1 and is repeated. At this step, depending on the decision it may be formally recorded and communicated to others involved in the person’s live, formal or informal who will support its implementation.
- #17 It is at this point that decision making often falters as the tasks, the power, or resources necessary to implement the decision may be beyond the scope of the supporters involved in earlier stages of the decision. Importantly, implementation may not rest with decision making supporters but with the NDIS, a case manager or service provider. At this stage, decision making supporters may seek out advocates to support implementation of the decision or others in a person’s circle may shift into an advocacy role to make sure the decision is followed through. The processes of support do not stop here; as the person being supported is likely to be involved in making consequential decisions for which support might be needed and other unrelated decisions as their life unfolds. Having an advocate or a case manager to help implement a decision may not negate the need for continuing support with decision making.
- #18 Depend on timing and situational factors Significance, scope and nature of the decision Who else might be involved in or affected by the decision
- #19 Commitment Effective support for decision making is contingent on the relationship between the person and their supporters. This means that first and foremost, supporters must have a relationship with the person and a commitment to upholding their rights. The relationship does not have to be ‘excellent’ or ‘perfect’ but it has to be underpinned by unconditional regard for the person as a human being of equal value and a holder of rights. With equality and rights as foundational beliefs, supporters are more likely to have positive expectations about the person’s participation in decision making and to respect their opinions and preferences rather than subordinating them to those of others in the decision making space (e.g., family members, staff, experts). Effective support relationships are characterised by trust, genuine positive regard and honest interpersonal interactions. Knowing a person is dynamic and ever changing a supporter must be committed to continually learning about the person’s changing self often in terms of skills, preferences and circumstances. Orchestration Support for decision making is a shared task, involving a range of people from different parts of a person’s life. Importantly too it will involve people who know the person in different ways, such as a friend, a sister, and perhaps more instrumentally as a client who requires intensive and costly support with everyday activities. Supporters may include immediate or extended family, direct support workers, managerial staff, and subject matter experts. A primary supporter leads and orchestrates support, drawing in other supporters, both formal and informal from various parts of the person’s life, as well as mediating any differences. If such a lead person is not evident then, for some decisions, it will be necessary to find someone willing to take on that role. Reflection and Review Supporters can, consciously or unconsciously, exercise enormous influence on people with cognitive disabilities during the process of supporting decision making. Continuous reflection by supporters on their own values, their own stake in the decision and potential to influence the person they are supporting will help ensure the decision making agenda remains based on the will, preference and rights of the person they are supporting. Reflexivity, which is self-awareness and continuous reflection, helps supporters to adopt a neutral non-judgmental stance that puts aside their own preferences and assumes a neutral view on the costs and benefits of risk taking. These principles mean that supporters must employ a self-questioning strategy, applying self-checks and balances to each decision situation. They must identify too points in the process of support where they are particularly vulnerable to providing biased, value-laden, or constrained support. The principles of reflective practice help also to identify occasions when unchallenged implicit assumptions and worldviews are at play. Support for decision making should be transparent and accountable, which means supporters must be both self-reflective about their support and open to review by others. Supporters should be able to articulate their reasoning processes and describe the observations, experience and knowledge they have used to inform their support and track this through to the point of decision,
- #20 Can be applied by supporters of people with cognitive disabilities within current legal frameworks in Australia