Presented t an ADA Australia forum on supported decision making, these slides review the existing evidence about supported decision in Australia from 6 pilot schemes between 2010-2015 and summarise work done at Latrobe University on understanding the processes of support for decision making and development of a practice framework

1. latrobe.edu.au CRICOS Provider 00115M
Title
Name
Living with Disability Research Centre
La Trobe University
Building an Evidence Base about Support for
Decision Making in Australia
Christine Bigby & Jacinta Douglas
La Trobe University

2. 2La Trobe University
New Paradigm of Supported Decision Making
 Premise: everyone has the right to participate in decision making
 Sufficient and effective support tailored to the individual to
participate through:
̶ changed expectations of others
̶ development of skills and experience
̶ support to express will and preferences
̶ interpretation of the person’s will and preferences.
• Persons with disabilities enjoy legal capacity
on an equal basis with others in all aspects
of life.
• Signatory nations agree to develop
“appropriate measures to provide access by
persons with disabilities to the support they
may require in exercising their legal
capacity.”
National Decision Making Principles (2014)
• The will, preferences and rights of persons who may
require decision-making support must direct
decisions that affect their lives. (principle 3)
• Persons who require support in decision-making
must be provided with access to the support
necessary for them to make, communicate and
participate in decisions that affect their lives (principle 2)

3. 3La Trobe University
Decision Making
 Decisions described in different ways
̶ Scope
o smaller day-to-day - personal care, engagement with others,
community activities.
o bigger - more enduring things, décor of home, where to live longer
time frame, at the interface between systems or settings, involve
multiple supporters.
̶ who is involved
̶ constraining influences
̶ time frame
̶ consequences or outcomes
 Embedded in each other - cumulative
 An interdependent rather than independent process

4. 4La Trobe University
Delivering Decision Making Support
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
Limited Evidence Practice of Support - Australia or Overseas
 La Trobe research agenda
 Understand the experience (Browning, Bigby & Douglas, 2013; Douglas, Bigby, Knox & Browning, 2014; Knox,
Douglas & Bigby, 2013, 2014, 2015 a & b, 2016; Bigby, Whiteside & Douglas, 2015)
̶ People with cognitive disability who receive support
̶ People who provide support
̶ Identify factors that underpin the delivery of effective decision-making
support
 What can be learned from programs that deliver support (Bigby et al., 2016)
 Develop and evaluate resources (Bigby & Douglas, 2014-2015; Bigby, Douglas, Carney, Wiesel & Then,
2015-2019)
̶ Provide evidence-based capacity building education programs
̶ Deliver support to ensure that the desires of people with cognitive
disability are at the centre of decision-making

6. 6La Trobe University
Decision Making Support in Australia
Legal reform for supported decision making is pending in Australia
 Reform would give, for example, legal standing to supporters
 Use of term support for decision making to avoid confusion
 Many elements are not new and have begun to be put into practice
 Six Pilot projects between 2010- 2015 potential insights into:
̶ Practice
̶ Program models
̶ Costs & benefits and effectiveness of varying models

7. 7La Trobe University
Method
 From the large body of grey literature about the pilots
 What can be learned
 Implications for future development
 Critical review of descriptive and evaluative documents and resources developed
Data
extracted and
compared
across
programs
Rationale,
model, scope
participants
of each pilot
Methods and
findings from
evaluations
(5)
Checked for
accuracy and
progressively
synthesised
• SA1 Office of Public Advocate
• ACT, ADACAS, advocacy
organisation
• VIC, Office of the Public
Advocate
• NSW, Dept of Family and
community services
• SA 2, Office of the Health &
Community Services Complaints
Commissioner
• WA Individualised Services
(Waid)

8. 8La Trobe University
Descriptive Overview
 Small: 6- 36 decision makers
 Time limited: 1-2 years
 Non-statutory
 Similar aims
 Enabling people to have more control over own decisions
 Trail models of supported decision making with specific groups – socially
isolated, people with more complex needs)
 Developing resources for supporters
 Opaque program logic – support to dyad of decision maker supporter by
coordinator and training
 Design slightly different
 Support to dyad by coordinator or facilitator
 Two step process – support for decision readiness – support to dyad
 Dispersed – coordinator support to facilitators who support one or two dyads

9. 9La Trobe University
Descriptive Overview
 Little information about inputs – staff time or skills
 Or about outputs, decisions made
 Decision-makers
 Majority people with mild intellectual disability but also people
with acquired brain injury
 Targeted sub groups
̶ At risk of guardianship (SA)
̶ Complex support needs (ACT)
̶ Socially isolated with informal support (VIC)
Images from, Supported Decision Making Project Resources, https://www.youtube.com/watch?v=Zqv7_J3SAAQ&index=2&list=PLC-
Tk74kPJiRqGxRU24QTw45mO-PstVtu
 Supporters
 Recruited through existing networks, freely given and paid relationships
 Volunteers with no prior relationship
 Development of resources – values and ideologically based

10. 10La Trobe University
Findings from the Evaluations
 5 of 6 programs some evaluative report – very small sample sizes, primarily
descriptive.
 Main themes:
• For decision makers – confidence, skills,
• For supporters – change of approach
• Feasibility for people under guardianship
Positive
outcomes
• Difficulty getting decisions acted on
• Opposition and conflict from others in persons network
• Where do decision makers stand vis a vis others
• Does support extend to advocacy? Or case management?
Uncertain
boundaries of
decision support
• Most supporters known to the person already but hard to
engage
• Significant time to recruit
• Pre-existing volunteers in Vic but high drop out at first stage
Difficulty
securing
supporters

11. 11La Trobe University
Findings for the Evaluations
• Supporters valued assistance to negotiate
relationships, expectations, clarify aspects of role
• Staff provided advocacy, helped resolve conflict
• Staff helped continuity
Positive value of
program staff and
support
• Difficult to think of decisions want to make
• ACT identified decision readiness as initial step
• Need for broader cultural change to raise expectations of
others
• More experience and opportunities for decision making
Limited experience
and low
expectations of
decision making
• Conflicting views, some found them more
useful than others
• Some preferred face to face individual support
Varying value of
written resources

12. 12La Trobe University
What can be Learned from these Programs?
Positive outcomes can be achieved – even for people with guardians
Demonstrates potential of decision support for people socially isolated – Need for
more knowledge about recruitment, retention and mentoring
Identified some key issues for future – rather than resolved
Operating in the informal sphere of civil society can be difficult
Moving to a formal or quasi legal scheme may help to more clearly define role
and standing with others, and be more inclusive
Value of programmatic approach – embeds training, support, back up for decision
making supporters
Demonstrate support for decision making is an ongoing, lengthy, and time consuming
process and not something that can be done alone

13. 13La Trobe University
Understanding Experiences of Decision Making Support
 Series of studies people with acquired brain injury and supporters (Knox, Douglas and Bigby,
2015, 2016a & b, c) and people with intellectual disability (Bigby, Whiteside, Douglas, 2015)
 Complexity of the support process, its role in maintaining a sense of self
 Centrality of individual to decision making process
 Importance of
̶ context –strategies dependant on context and decision
̶ ongoing commitment to knowing the person well, understanding their
preferences and changing needs.
̶ positive support relationship
̶ positive approach to risk
 Shared process with others
 Potential for supporters to shape decisions
 Challenges
̶ remaining neutral
̶ managing risk
̶ dealing with conflict
 Need for support/assistance

14. 14La Trobe University
Framework for Support for Decision Making Practice
 Identified elements of effective support developed from
empirical workincorporated into a framework for practice.
 Can be applied by supporters of people with cognitive
disabilities within current legal frameworks in Australia
̶ Steps in support for decision making
̶ Principles of support for decision making
̶ Strategies for practice

15. 15La Trobe University
Steps

16. 16La Trobe University
 Support a shared task
 Primary supporter
leads and orchestrates
others
 Involving people from
different parts of a
person’s life.
 Drawing in new
people
 Mediating differences
of perception
 Trust
 Unconditional regard as
a Human being of equal
value and a holder of
rights
 Positive expectations
 Respect for their
opinions and
preferences
 Commitment to
continually learning
about person, skills,
preferences and
circumstances
 Reflexivity, self-awareness and continuous reflection
 Decision making agenda based on the will, preference and rights of the person
 Influence of own values and interests
 Self-checks and balances to each decision situation.
 Transparency - describe support provided, the rationale behind it and evidence of strategies

17. 17La Trobe University
Strategies
 Depend on timing and situational factors
 Significance, scope and nature of the decision
 Who else might be involved in or affected by the decision

18. 18La Trobe University
Last words… 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
 Need to tackle wider community/staff/family expectations and
understanding about support for decision making
 Need to find ways to support and resource decision making supporters
 Big gap about program logic, costs and benefits -some indication high
resource intensity required
 No clarity re success of short term capacity building programs
 New ARC Linkage study
̶ Develop and test effect of evidence based resources, training
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

19. 19La Trobe University
References and 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

20. 20La 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.

21. 21La 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.

22. Thank you
latrobe.edu.au CRICOS Provider 00115M
Contact
C.Bigby@latrobe.edu.au