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Bigby nsw ncid decision making sept 2016
1. latrobe.edu.au CRICOS Provider 00115M
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
New Paradigm of Supported Decision Making
๏ง Premise: everyone has the right to participate in decision
making
๏ง 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
Decision Making Support in Australia
Legal reform for supported decision making is pending in Australia
๏ง Reform would give, for example, legal standing to supporters โ recognise
shared decision making
๏ง Many elements are not new and have begun to be put into practice
๏ง We use the term support for decision making to avoid confusion
4. 4La Trobe University
Delivering Decision 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
Our Aims - the Practice - How ?
๏ง Develop an evidence based framework to guide the practice of
decision-making supporters
ฬถ Understand the experience
o people who receive support
o people who provide support
ฬถ Identify factors that underpin the delivery of effective
decision-making support
ฬถ Design a framework with associated resources
o pilot, review and revise
ฬถ Evaluate the framework and associated resources
o rigorous trial
6. 6La Trobe University
Support for Decision Making
๏ง Sufficient and effective support
ฬถ is tailored to the individual and the situation
ฬถ varies in type and intensity depending on the decision
ฬถ compensates for the personโs 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
ฬถ is dependent on the skills of the decision-making supporter
7. 7La Trobe University
Challenges of Providing Support
๏ง Huge potential for supporters to shape decisions
๏ง Supporters struggle with
ฬถ remaining neutral
ฬถ taking a positive approach to risk
ฬถ dealing with conflict
๏ง Need for support/assistance
9. 9La Trobe University
The Process of Support for Decision Making
7 steps
Informed by 3
principles
Delivered through
strategies tailored to the
person
12. 12La Trobe University
Understanding the persons will and
preference
๏ง โblue skyโ step
- think as widely as possible
- consider all the possible options that need to be explored
and their consequences
- explore the personโs preferences about all the things that
will be encompassed in the decision
13. 13La Trobe University
Refining the decision and taking account of
constraints
๏ง Preferences are prioritized, refined and shaped by
constraints
- time
- money
- impact on other people
- safety.
๏ง Ways are found to ensure the decision will be
implemented
- potential constraints might be questioned or creatively
managed
14. 14La Trobe University
Deciding the type of decision โ is there a
need for a formal process
๏ง 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
๏ง The same person may participate at different times in
making self-generated, shared or substitute decisions
with support.
15. 15La Trobe University
Reaching the decision and associated
decisions
๏ง 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
๏ง Depending on the decision
- it may be formally recorded and communicated to others
involved in the personโs life who will support its
implementation.
16. 16La Trobe University
Implementing the decision & seeking
advocates if necessary
๏ง Implementation may not rest with the decision
making supporter
- May need advocates to support implementation of the
decision
o Others in a personโs circle may shift into an advocacy role
๏ง The processes of support do not stop here
- consequential decisions
- unrelated decisions as their life unfolds.
19. 19La Trobe University
The Process 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
Last wordsโฆ Implications for NDIS
๏ง Decision making support is part of reasonable and necessary disability
related needs โ over long term, rather than one off short term event
๏ง Decision making support is different from short term advocacy - case
management - planning
๏ง Everyone (planners and case managers) need to recognise when support for
decision making is happening โ is it working well or is there a need to look
further for good support
๏ง Need to tackle wider community/staff/family expectations and
understanding about support for decision making
๏ง Big gap in understanding how to deliver support about program logic, costs
and benefits -some indication high resource intensity required
๏ง But find ways to support and resource decision making supporters
๏ง Focus on the practice of How if the benefits are going to be realised โ too
often good policy fails at the practice stage
21. 21La Trobe University
References and Resources
Virtual Special Issue of Research and Practice in Intellectual and Developmental Disabilities on support for decision making โ 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 wonโt be around foreverโ: 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) โIโve never been a yes personโ: Decision-making participation and
self-conceptualisation after severe traumatic brain injury. Disability and Rehabilitation
Knox, L., Douglas, J & C. Bigby (2015). โThe biggest thing is trying to live for two peopleโ: 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 Commissionerโs 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
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 Queenslandโs 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.
Can be applied by supporters of people with cognitive disabilities within current legal frameworks in Australia
Step 1. Knowing the person
Support for decision making is person centred. As Figure 4 illustrates supporters need to โknowโ the person well. This means knowing all aspects of the person and having a sense of the personโs self-identity or self- concept (Who I am and how I feel about myself). This usually encompasses knowing about โ their attributes and style โ personal characteristics โ likes, dislikes, preferences - skills, the effect on their understanding of their specific cognitive impairments โ 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 โexpertsโ who have been involved in their life. Knowledge of what defines the person provides the conceptual context for understanding their will and preferenceย . ย
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, dรฉcor 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 personโs 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 personโs life that will have to be considered.
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Step 3 Understanding a personโs will and preferences about the decision
This is a โblue skyโ 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 personโs 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 โ 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 sonโs 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.
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.
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 personโs 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 personโs will and preference.
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 personโs live, formal or informal who will support its implementation.
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 personโs 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.
Depend on timing and situational factors
Significance, scope and nature of the decision
Who else might be involved in or affected by the decision
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 โexcellentโ or โperfectโ 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 personโs 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 personโs 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 personโs 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 personโs 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,
Can be applied by supporters of people with cognitive disabilities within current legal frameworks in Australia
