CCher Nicholson Supported decision-making – the South Australian experience

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Cher Nicholson Supported decision-making – the South Australian experience

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CCher Nicholson Supported decision-making – the South Australian experience

  1. 1. Supported Decision Making –The South AustralianExperienceCher NicholsonIRELANDDUBLINAmnesty International ConferenceApril 2013
  2. 2. HUMANRIGHTSEQUALITYEVERYONEEVERYWHEREEVERYDAY
  3. 3. 1 in 5people in Australia nominate ashaving a disabilityEstimated population ofAustralia at 30th June 2012was 22,785,500 people.Estimated population ofSouth Australia at 30thJune 2012 was1,645,000.Area = 983,482Sq Km
  4. 4. Un Convention on HumanRights• Article 12Equal recognition before the Law. The right for Peoplewith Disability to make their own decisions withsupport of their choosing.• Article 16Freedom from exploitation, violence and abuse.• Article 5Equality & Non Discrimination.
  5. 5. Bach: Re-Defining Capacity– 2 steps1. First and foremost, capacity is the ability withassistance as needed, to understand thenature and consequences of a decisionwithin the context of the available range ofchoices; and to communicate that decision,with assistance as needed.
  6. 6. Re-Defining Capacity2. Where a person may not be able to meet thesetests even with assistance, capacity can alsomean the ability to express one’s intention and tocommunicate one’s personhood (wishes, visionfor the future, needs, strengths, personalattachments and field of care) to a trusted groupof others chosen by the individual who, in afiduciary relationship of trust, confidence andresponsibility recognize the individual as a fullperson, and commit to acting on andrepresenting that person’s agency in accordancewith his/her intentions and personhood.
  7. 7. Assessing Capacity• Understand the facts involved in thedecision• Know the main choices that exist• Weigh up the consequences of thechoices - take responsibility for choice• Understand how the consequences affectthem• Communicate their decision
  8. 8. 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 thesupport if this is required.• First most important decision is about theagreement – assisted by the facilitator.
  9. 9. Where is the real incapacity?Incapacity ResponseFamily incapacity Mediation to avoid guardianshiphearingService incapacity Advocacy to provide professionalassessments, care andaccommodationCommunity incapacity to protectvulnerable peopleUK and US style adult protectionpolicies or legislationIncapacity of justice system to deterperpetrators of abuse on vulnerablepeopleWillpower and focus by police,prosecutors and the courts
  10. 10. • Capacity versus Vulnerability• Support versus AssistanceConsiderations
  11. 11. Aims of the SDM Project• to develop effective ways of enabling people to makesupported decisions within an appropriate safeguarding framework• to identify, facilitate and provide the range and forms of support that canmake a difference• to inform the principles for a clear policy framework forsupported decision making• to develop practice guidelines for supported decision making• to prioritise the voice of people living with disabilityabout the optimal ways to provide support with decision making• to promote awareness and strategies to assist agencies andservice providers to work within a supported decision makingframework with people living with disability so they can exercise their legal rightsand capacity.
  12. 12. Supported Decision MakingExpress Wish Best InterestPerson with DisabilityWill & PreferencePlus Supporters
  13. 13. SA Supported DecisionMaking Trial• Supported Person – Decision Maker• Supporter• Monitor• Make a non statutory agreement• 20 people alternatives to guardianship• 20 people early intervention + furtherapproval for 10 (Health Ethics)• Final - 26 people on agreements
  14. 14. The Supported Person:PARTICIPANT- Decision MakerA 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 forwhich decision.• To express a wish to end support if that time comes.• To be aware that they are making the final decision andnot their supporter - take responsibility for their choices.
  15. 15. The Supporter (s)• Respect and value the supported person’sautonomy and dignity.• Know the supported person’s goals,values and preferences.• Respect the individual decision makingstyle of the supported person andrecognise when and how support may beoffered.
  16. 16. The Supporter (s) cont.• To form a trusting relationship with thesupported person.• Be willing in the role of supporter, to fulfil theirduty to the supported person, and not use thisrole as a way of advancing their own interests orany other person’s interests.• To be able to spend as much time as is requiredto support a person make each decision.
  17. 17. Monitor:• To be aware of all decisions made and howsupport is provided.• To provide assistance to the supported personand supporter in undertaking the supporteddecision making process.• To act as a resource for the other parties when amatter is difficult to resolve.• To take necessary action if the monitor believesthat the supported decision making agreementhas broken down.
  18. 18. Agreements• The document itself - deliberate wording.• Consent.• People have specifically added what theywanted to make decisions about.• They added what kind of support theyspecifically wanted and how they wanted itdelivered.• You might prompt the supported person byletting them know how participants have usedtheir agreements to date.
  19. 19. Types of decision• Accommodation• Lifestyle• Health[Trial did not include financial decisions or anydecisions regarding assets. Participants wereasked to be specific in their decision making toallow for measurable out comes. AdministrationOrders remained in place]
  20. 20. 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
  21. 21. 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 balancewith reasonableness risk – benefits.• Safeguards with supporters/monitorsbeing in place.
  22. 22. Trial Exclusions• Dementia.• Primary diagnosis of mental health.• Extreme conflict.• Safety considerations.• Degenerative conditions.
  23. 23. SDM Information& Education forResearch TrialEmployFacilitatorSDM Information& Education forResearch TrialCreate Handouts,Flyers, Newsletters,Web PageCirculate through disability andcommunity networks, mediaand supported work places bypresentations to staff andinformal chats to potentialparticipantsRecruit mentDo they fit the ResearchTarget Group? [Do they haveany exclusion criteria?]No YesAdvocacyMediation /CounsellingReferral toAgencyVoluntaryGuardianshipSafeguardsDeclined -No furtheractionNosupporter orsupporterdeclinesGo ontoAgreementDiscussduringSupervisionPut on hold;IntroducedSupporter?ParticipantconsentConsent tofollow-up &evaluationby FacilitatorParticipant keepsdiary of alldecisions.Facilitatormaintainsfortnightly contactFacilitator contactsall Participantsclose relationshipsand Services soall working forcommon goal.EmployFacilitatorDesign & Produce Participant ConsentForm, Agreement, Supporter Consent,Monitor Consent and design arecruitment packageNo furtheractionSDM Work Flow Chart
  24. 24. Trial Governance• Non-statutory agreements – oversight.• Based at Office of Public Advocate.• Project Control Group ( 4 consumers, 1carer, 2 advocate/guardians, 2 academics,2 lawyers, 1 advocate leader).• Development of practice guidelines.• Future base in the non-governmentsector.• Ethics committee.
  25. 25. SDM Trial ModelProject Control GroupPrincipal ResearchersCommunity ConsultationSDM Project Coord. / VolunteerSupporter / MonitorParticipant / Supported Person
  26. 26. Finalised Data from the SA Trial26 Agreements in place out of atotal of 52 possible candidates
  27. 27. Agreements:1214MaleFemale
  28. 28. Ages of Participants on Agreements01234567818 to 19 20 to 29 30 to 39 40 to 49 50 to 59 60 to 69 70 to 79
  29. 29. Agreements – Types Of Disability0 5 10 15 20 25Motor NeuroneI D + PhysicalI D + Motor NeuroneI D + HydrocephalusI D + AutismI DGeneticFoetal Alcohol SyndromeBrain Injury + BlindBrain Injury + DeafBrain InjuryAutism + Motor NeuroneAutism
  30. 30. Agreements’ Relationships024681012141618WidowerSingleDivorcedDe-FactoIn RelationshipMarried
  31. 31. Agreements’ Supporter Choice012345678910111213FriendSpouseParentSiblingGrandparentSon/DaughterExtendedFamilyIntoducedNoneStart CompletionOne Client lost both a friend and an introduced supporter
  32. 32. Participant InitialAccommodation012345678910GroupHouseAgedCareFamilySAHTPrivateRentalResidentialCareFriendsSharedHouse
  33. 33. Participants’ AccommodationDecisions01234567ClusterSAHTGroupPrivateResidentialRepairs
  34. 34. Accommodation Before & AfterAgreement012345678910Before After
  35. 35. Participants’ Health Decisions0123456789Medical testsTreatmentsHospitalMedicationWeightCommunication TechnologyToileting
  36. 36. Participants’ Lifestyle Decisions02468101214161820
  37. 37. How people wanted supportdeliveredI want my supporters to assist me to make mydecisions by:-• Providing information in a way I canunderstand.• Discussing the good things and bad thingsthat could happen.• Expressing my wishes to other people.
  38. 38. Which decisionsI trust them to help me make decisionsabout:-• Where I live.• Who I spend time with.• What to do with work/study/activities.• My health.
  39. 39. Specific AdditionsI 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).
  40. 40. 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)
  41. 41. 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 fluinjections. (Residential setting)• Support with decisions around access with children.(Lives alone private)• Funeral arrangements. (Lives alone private)
  42. 42. Feedback of people receivingsupport –decision maker.• All said the written information was helpful, however onlya few went back to read it afterwards and very few readit again with help. When relevant, the pictograms werealso useful.• All found the interview process comfortable.• All found the interviewer listened understood and treatedthem with respect and dignity.• Instructions were clear.• All were given the opportunity to speak by themselves.
  43. 43. Feedback of supporters• Most people had not heard of supported decision making priorto the project.• Roles were clearly defined.• Clarification and questions were dealt with to theirsatisfaction.• All parties were satisfied with the outcome of their interviewand were treated with respect and dignity.• One responded said while she felt definitely respected shewent onto say “As a friend of somebody, it was strange to bedrawn into an official role. Both with Police Checks and aformal role. It was very odd”.
  44. 44. Conclusions from the SA Trial (1)• The Supported Decision Making Trial is effectivelyproviding 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 decidewhether or not to proceed with an agreement.• The facilitator role is to assist with this initial personaldecision making by participants, and then be a resourceto assist and coach participants in their support role.
  45. 45. Conclusions from the SA Trial (2)• The commencement of a supported decision makingagreement can have a positive impact on a person’s life.A “strengths based” approach can build confidence indecision making.• The agreements when established have been used for arange of health care, accommodation and life styledecisions.• Many Agreements have been established for over twelvemonths.• Several Participants have requested aid in revoking theirAdministration Order using the SDM framework.• Many tentatively start SDM with small decisions butquickly progress to those that are life-changing.
  46. 46. Conclusion - Upholding rights• Choice and personal authority• Assist and support capacity, rather thanseek incapacity• Working towards personal goals andopportunities• Statement of personal wishes when hasincapacity• Integrated services across government
  47. 47. Some things that worked well• Recruitment process• Seeing people by themselves• Peer consultant• Seeing participants in their own differentsettings (home, work, leisure)• Supervision & Dream team discussions
  48. 48. Some things that worked wellcont.• Working with participants ,supporters andintroducing project and process ofSupported Decision Making to involvednetworks, services/organisations• Spreading Supported Decision Making &sharing the information gained interstateand at the World Congress on AdultGuardianship• Deliberately worded agreement
  49. 49. Some things that worked wellcont.• Giving information & explanationsindividually and in different formats• Ready access to facilitator by participants,supporters and participant networks.• Providing taxi vouchers & transport asrequired.• Having ethics approval & OPA’s supportparticularly with agreements.
  50. 50. Some things that worked wellcont.• Ability to influence Guardianship Ordersparticularly in the case of Admin Orders.• Working with expressed wish rather thanbest interest decisions• Directing to other appropriate agencies• Offering case management and advocacyuntil individuals could be directedelsewhere.• Managing on a tight budget
  51. 51. Some things to improve• Full time facilitator• Training for supporters• Location of the project• Starting to work for continuance of projectbefore project concluded.• Written information for service providersand organisations.
  52. 52. Some things to improve cont.• Having separation from the GuardianshipOrders• Flexible criteria for recruitment in thefuture to include people with mental healthissues and people with age relatedvulnerability.• Finding solutions for people that did nothave a supporter• A review process post project
  53. 53. Some things to improve cont.• Addressing differences with servicesconcerning risk management and bestinterest decisions• Working to change culture in Disabilitysector• Case managing as not availableelsewhere• Need more funds, staff & other resourcesto expand the influence
  54. 54. Some things to improve cont.• Required larger numbers to influencelegislation & culture change.• Tension between research & practiseconsiderations• Competing priorities• Training for peer consultants
  55. 55. Decision Makers Radio InterviewDiscussing benefits of participatingin SDM trial
  56. 56. Contact detailsCher Nicholson (Supported Decision Making)ASSET SA (Applied Specialized Skills Experiential Training)2a Glenburnie Avenue,Torrens ParkSouth Australia S.A. 5062M: +61 409 302 687E: cher.nicholson@bigpond.com

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