latrobe.edu.au CRICOS Provider 00115M

Title

NameLiving 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

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)

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

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

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

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

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)

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

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

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

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

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

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

14La Trobe University

Framework for Support for Decision Making Practice

Identified elements of effective support developed from empirical work incorporated 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

15La Trobe University

Steps

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

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

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

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

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 isinfluencing 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 ofFamily 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.

21La Trobe University

Western Australia's Individualised Services. Supported Decision Making Project Resources 2014 [cited 2016 3rd August]. Availablefrom: 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.

Thank you

latrobe.edu.au CRICOS Provider 00115M

ContactC.Bigby@latrobe.edu.au