The document summarizes the Supported Decision Making (SDM) trial conducted in South Australia. The trial involved 26 participants who created agreements with supporters and monitors to make decisions with support instead of having a guardian appointed. Feedback found establishing supported decision making agreements improved participants' lives and decision making abilities. The trial demonstrated how supported decision making can uphold rights and provide choice rather than seeking incapacity. Some aspects that worked well included the recruitment process and providing information individually. Areas for improvement include expanding supporter training and continuing the project's work.
3. 1 in 5
people in Australia nominate as
having a disability
Estimated population of
Australia at 30th June 2012
was 22,785,500 people.
Estimated population of
South Australia at 30th
June 2012 was
1,645,000.
Area = 983,482Sq Km
4. Un Convention on Human
Rights
• Article 12
Equal recognition before the Law. The right for People
with Disability to make their own decisions with
support of their choosing.
• Article 16
Freedom from exploitation, violence and abuse.
• Article 5
Equality & Non Discrimination.
5.
6. Bach: Re-Defining Capacity
– 2 steps
1. First and foremost, capacity is the ability with
assistance as needed, to understand the
nature and consequences of a decision
within the context of the available range of
choices; and to communicate that decision,
with assistance as needed.
7. Re-Defining Capacity
2. Where a person may not be able to meet these
tests even with assistance, capacity can also
mean the ability to express one’s intention and to
communicate one’s personhood (wishes, vision
for the future, needs, strengths, personal
attachments and field of care) to a trusted group
of others chosen by the individual who, in a
fiduciary relationship of trust, confidence and
responsibility recognize the individual as a full
person, and commit to acting on and
representing that person’s agency in accordance
with his/her intentions and personhood.
8. Assessing Capacity
• Understand the facts involved in the
decision
• Know the main choices that exist
• Weigh up the consequences of the
choices - take responsibility for choice
• Understand how the consequences affect
them
• Communicate their decision
9. Capacity Test
• Presumption of capacity.
• Still has some form of modified “capacity”
consideration.
• Focus is on the capacity to want support,
choose the supporter, and cease the
support if this is required.
• First most important decision is about the
agreement – assisted by the facilitator.
10. Where is the real incapacity?
Incapacity Response
Family incapacity Mediation to avoid guardianship
hearing
Service incapacity Advocacy to provide professional
assessments, care and
accommodation
Community incapacity to protect
vulnerable people
UK and US style adult protection
policies or legislation
Incapacity of justice system to deter
perpetrators of abuse on vulnerable
people
Willpower and focus by police,
prosecutors and the courts
11. • Capacity versus Vulnerability
• Support versus Assistance
Considerations
12. Aims of the SDM Project
• to develop effective ways of enabling people to make
supported decisions within an appropriate safeguarding framework
• to identify, facilitate and provide the range and forms of support that can
make a difference
• to inform the principles for a clear policy framework for
supported decision making
• to develop practice guidelines for supported decision making
• to prioritise the voice of people living with disability
about the optimal ways to provide support with decision making
• to promote awareness and strategies to assist agencies and
service providers to work within a supported decision making
framework with people living with disability so they can exercise their legal rights
and capacity.
14. SA Supported Decision
Making Trial
• Supported Person – Decision Maker
• Supporter
• Monitor
• Make a non statutory agreement
• 20 people alternatives to guardianship
• 20 people early intervention + further
approval for 10 (Health Ethics)
• Final - 26 people on agreements
15. The Supported Person:
PARTICIPANT- Decision Maker
A supported person will need to be able to:
• To express a wish to receive support.
• To form a trusting relationship with another person (s)
(supporter or monitor).
• To indicate what decisions they may need support for.
• To indicate who they wish to receive support from for
which decision.
• To express a wish to end support if that time comes.
• To be aware that they are making the final decision and
not their supporter - take responsibility for their choices.
16. The Supporter (s)
• Respect and value the supported person’s
autonomy and dignity.
• Know the supported person’s goals,
values and preferences.
• Respect the individual decision making
style of the supported person and
recognise when and how support may be
offered.
17. The Supporter (s) cont.
• To form a trusting relationship with the
supported person.
• Be willing in the role of supporter, to fulfil their
duty to the supported person, and not use this
role as a way of advancing their own interests or
any other person’s interests.
• To be able to spend as much time as is required
to support a person make each decision.
18. Monitor:
• To be aware of all decisions made and how
support is provided.
• To provide assistance to the supported person
and supporter in undertaking the supported
decision making process.
• To act as a resource for the other parties when a
matter is difficult to resolve.
• To take necessary action if the monitor believes
that the supported decision making agreement
has broken down.
19. Agreements
• The document itself - deliberate wording.
• Consent.
• People have specifically added what they
wanted to make decisions about.
• They added what kind of support they
specifically wanted and how they wanted it
delivered.
• You might prompt the supported person by
letting them know how participants have used
their agreements to date.
20. Types of decision
• Accommodation
• Lifestyle
• Health
[Trial did not include financial decisions or any
decisions regarding assets. Participants were
asked to be specific in their decision making to
allow for measurable out comes. Administration
Orders remained in place]
21. Safety Measures
• Police Check
• Supervision Discussion
• Use of a Monitor
• Clarity of roles
• Regular review by Coordinator
• Trial Governance
• Follow Selection Process
• Health Ethic Approval
• Managing Conflict
• Involving Participants networks
• Maintaining and enhancing relationships
• Connecting to Services and Local Community
22. Trial Inclusion
• People themselves make the decision.
• Duty of care – whether to endorse it.
• Question re people at risk.
• Looking at Dignity of Risk and moving.
away from a safe place and the balance
with reasonableness risk – benefits.
• Safeguards with supporters/monitors
being in place.
24. SDM Information
& Education for
Research Trial
Employ
Facilitator
SDM Information
& Education for
Research Trial
Create Handouts,
Flyers, Newsletters,
Web Page
Circulate through disability and
community networks, media
and supported work places by
presentations to staff and
informal chats to potential
participants
Recruit ment
Do they fit the Research
Target Group? [Do they have
any exclusion criteria?]
No Yes
Advocacy
Mediation /
Counselling
Referral to
Agency
Voluntary
Guardianship
Safeguards
Declined -
No further
action
No
supporter or
supporter
declines
Go onto
Agreement
Discuss
during
Supervision
Put on hold;
Introduced
Supporter?
Participant
consent
Consent to
follow-up &
evaluation
by Facilitator
Participant keeps
diary of all
decisions.
Facilitator
maintains
fortnightly contact
Facilitator contacts
all Participants'
close relationships
and Services so
all working for
common goal.
Employ
Facilitator
Design & Produce Participant Consent
Form, Agreement, Supporter Consent,
Monitor Consent and design a
recruitment package
No further
action
SDM Work Flow Chart
25. Trial Governance
• Non-statutory agreements – oversight.
• Based at Office of Public Advocate.
• Project Control Group ( 4 consumers, 1
carer, 2 advocate/guardians, 2 academics,
2 lawyers, 1 advocate leader).
• Development of practice guidelines.
• Future base in the non-government
sector.
• Ethics committee.
26. SDM Trial Model
Project Control Group
Principal Researchers
Community Consultation
SDM Project Coord. / Volunteer
Supporter / Monitor
Participant / Supported Person
27. Finalised Data from the SA Trial
26 Agreements in place out of a
total of 52 possible candidates
29. Ages of Participants on Agreements
0
1
2
3
4
5
6
7
8
18 to 19 20 to 29 30 to 39 40 to 49 50 to 59 60 to 69 70 to 79
30. Agreements – Types Of Disability
0 5 10 15 20 25
Motor Neurone
I D + Physical
I D + Motor Neurone
I D + Hydrocephalus
I D + Autism
I D
Genetic
Foetal Alcohol Syndrome
Brain Injury + Blind
Brain Injury + Deaf
Brain Injury
Autism + Motor Neurone
Autism
38. How people wanted support
delivered
I want my supporters to assist me to make my
decisions by:-
• Providing information in a way I can
understand.
• Discussing the good things and bad things
that could happen.
• Expressing my wishes to other people.
39. Which decisions
I trust them to help me make decisions
about:-
• Where I live.
• Who I spend time with.
• What to do with work/study/activities.
• My health.
40. Specific Additions
I want my supporters to assist me to make my decisions by:-
• Listening to me first and try and understand
(Home with family).
• Remind me to look forward and think of the future
(Home with family).
• Support with specific information re Court
(Sharing house temp).
• Support with responsibilities / advice
(Sharing house temp).
• Sometimes helping me to communicate
(Residential).
41. Specific Additions Cont. 1
• Alcohol use (Aged care facility)
• Travel (Aged care facility)
• Spending time with the family (Aged care facility)
• Parenting of daughter (Independent living private house)
• Parenting of son (Private house sharing temp)
• Court proceedings (Private house sharing temp)
42. Specific Additions Cont. 2
• Choosing my friends. (Residential setting)
• My health including all medical procedures.
(Residential setting)
• Choice of diet. (Residential setting)
• Managing my personal care. (Residential setting)
• Managing medication including never having flu
injections. (Residential setting)
• Support with decisions around access with children.
(Lives alone private)
• Funeral arrangements. (Lives alone private)
43. Feedback of people receiving
support –decision maker.
• All said the written information was helpful, however only
a few went back to read it afterwards and very few read
it again with help. When relevant, the pictograms were
also useful.
• All found the interview process comfortable.
• All found the interviewer listened understood and treated
them with respect and dignity.
• Instructions were clear.
• All were given the opportunity to speak by themselves.
44. Feedback of supporters
• Most people had not heard of supported decision making prior
to the project.
• Roles were clearly defined.
• Clarification and questions were dealt with to their
satisfaction.
• All parties were satisfied with the outcome of their interview
and were treated with respect and dignity.
• One responded said while she felt definitely respected she
went onto say “As a friend of somebody, it was strange to be
drawn into an official role. Both with Police Checks and a
formal role. It was very odd”.
45. Conclusions from the SA Trial (1)
• The Supported Decision Making Trial is effectively
providing information about supported decision making,
what it is, and how it might work.
• This information has enabled people with a disability,
and their potential supporters and monitors to decide
whether or not to proceed with an agreement.
• The facilitator role is to assist with this initial personal
decision making by participants, and then be a resource
to assist and coach participants in their support role.
46. Conclusions from the SA Trial (2)
• The commencement of a supported decision making
agreement can have a positive impact on a person’s life.
A “strengths based” approach can build confidence in
decision making.
• The agreements when established have been used for a
range of health care, accommodation and life style
decisions.
• Many Agreements have been established for over twelve
months.
• Several Participants have requested aid in revoking their
Administration Order using the SDM framework.
• Many tentatively start SDM with small decisions but
quickly progress to those that are life-changing.
47. Conclusion - Upholding rights
• Choice and personal authority
• Assist and support capacity, rather than
seek incapacity
• Working towards personal goals and
opportunities
• Statement of personal wishes when has
incapacity
• Integrated services across government
48. Some things that worked well
• Recruitment process
• Seeing people by themselves
• Peer consultant
• Seeing participants in their own different
settings (home, work, leisure)
• Supervision & Dream team discussions
49. Some things that worked well
cont.
• Working with participants ,supporters and
introducing project and process of
Supported Decision Making to involved
networks, services/organisations
• Spreading Supported Decision Making &
sharing the information gained interstate
and at the World Congress on Adult
Guardianship
• Deliberately worded agreement
50. Some things that worked well
cont.
• Giving information & explanations
individually and in different formats
• Ready access to facilitator by participants,
supporters and participant networks.
• Providing taxi vouchers & transport as
required.
• Having ethics approval & OPA’s support
particularly with agreements.
51. Some things that worked well
cont.
• Ability to influence Guardianship Orders
particularly in the case of Admin Orders.
• Working with expressed wish rather than
best interest decisions
• Directing to other appropriate agencies
• Offering case management and advocacy
until individuals could be directed
elsewhere.
• Managing on a tight budget
52. Some things to improve
• Full time facilitator
• Training for supporters
• Location of the project
• Starting to work for continuance of project
before project concluded.
• Written information for service providers
and organisations.
53. Some things to improve cont.
• Having separation from the Guardianship
Orders
• Flexible criteria for recruitment in the
future to include people with mental health
issues and people with age related
vulnerability.
• Finding solutions for people that did not
have a supporter
• A review process post project
54. Some things to improve cont.
• Addressing differences with services
concerning risk management and best
interest decisions
• Working to change culture in Disability
sector
• Case managing as not available
elsewhere
• Need more funds, staff & other resources
to expand the influence
55. Some things to improve cont.
• Required larger numbers to influence
legislation & culture change.
• Tension between research & practise
considerations
• Competing priorities
• Training for peer consultants
