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![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]](https://image.slidesharecdn.com/chernicholsonirelandconferencepresentationfinal-130430052929-phpapp02/75/CCher-Nicholson-Supported-decision-making-the-South-Australian-experience-20-2048.jpg)
![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](https://image.slidesharecdn.com/chernicholsonirelandconferencepresentationfinal-130430052929-phpapp02/75/CCher-Nicholson-Supported-decision-making-the-South-Australian-experience-24-2048.jpg)
More Related Content
Similar to CCher Nicholson Supported decision-making – the South Australian experience
CCher Nicholson Supported decision-making – the South Australian experience
- 1. Supported Decision Making– The South Australian Experience Cher Nicholson IRELAND DUBLIN Amnesty International Conference April 2013
- 2.
- 3. 1 in 5 peoplein 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 onHuman 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.
- 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. Wherea 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 • Understandthe 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 • Presumptionof 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 thereal 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 versusVulnerability • Support versus Assistance Considerations
- 12. Aims of theSDM 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.
- 13. Supported Decision Making ExpressWish Best Interest Person with Disability Will & Preference Plus Supporters
- 14. SA Supported Decision MakingTrial • 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 beaware 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 documentitself - 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 • PoliceCheck • 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 • Peoplethemselves 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.
- 23. Trial Exclusions • Dementia. •Primary diagnosis of mental health. • Extreme conflict. • Safety considerations. • Degenerative conditions.
- 24. SDM Information & Educationfor 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-statutoryagreements – 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 ProjectControl Group Principal Researchers Community Consultation SDM Project Coord. / Volunteer Supporter / Monitor Participant / Supported Person
- 27. Finalised Data fromthe SA Trial 26 Agreements in place out of a total of 52 possible candidates
- 28.
- 29. Ages of Participantson 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 – TypesOf 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
- 31.
- 32. Agreements’ Supporter Choice 0 1 2 3 4 5 6 7 8 9 10 11 12 13 Friend S pou se P arent S ibling G ran dparent S on/D augh ter E xtend edFam ilyIntoduced N o ne StartCompletion One Client lost both a friend and an introduced supporter
- 33.
- 34.
- 35. Accommodation Before &After Agreement 0 1 2 3 4 5 6 7 8 9 10 Before After
- 36. Participants’ Health Decisions 0 1 2 3 4 5 6 7 8 9 Medicaltests Treatments Hospital Medication Weight Communication Technology Toileting
- 37.
- 38. How people wantedsupport 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 trustthem 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 wantmy 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 peoplereceiving 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 theSA 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 theSA 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 - Upholdingrights • 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 thatworked 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 thatworked 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 thatworked 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 thatworked 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 toimprove • 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 toimprove 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 toimprove 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 toimprove cont. • Required larger numbers to influence legislation & culture change. • Tension between research & practise considerations • Competing priorities • Training for peer consultants
- 56. Decision Makers RadioInterview Discussing benefits of participating in SDM trial
- 57. Contact details Cher Nicholson(Supported Decision Making) ASSET SA (Applied Specialized Skills Experiential Training) 2a Glenburnie Avenue, Torrens Park South Australia S.A. 5062 M: +61 409 302 687 E: [email protected]