Supported Decision Making – The South Australian

Experience

Cher Nicholson

IRELANDDUBLIN

Amnesty International ConferenceApril 2013

HUMAN RIGHTS

EQU

ALI

TY

EVERYONE

EVERYWHERE EVER

Y D

AY

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

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.

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.

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.

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

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.

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

• Capacity versus Vulnerability

• Support versus Assistance

Considerations

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.

Supported Decision MakingExpress Wish Best Interest

Person with Disability

Will & Preference

Plus Supporters

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

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.

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.

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.

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.

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.

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]

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

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.

Trial Exclusions

• Dementia.

• Primary diagnosis of mental health.

• Extreme conflict.

• Safety considerations.

• Degenerative conditions.

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

Recruitment

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

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.

SDM Trial Model

Project Control Group

Principal Researchers

Community Consultation

SDM Project Coord. / Volunteer

Supporter / Monitor

Participant / Supported Person

Finalised Data from the SA Trial

26 Agreements in place out of a total of 52 possible candidates

Agreements:

1214

Male

Female

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

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

Agreements’ Relationships

0

2

4

6

8

10

12

14

16

18

WidowerSingle

Divorced

De-Facto

In Relationship

Married

Agreements’ Supporter Choice

0123456789

10111213

Start Completion

One Client lost both a friend and an introduced supporter

Participant Initial Accommodation

0123456789

10

Participants’ Accommodation Decisions

01234567

Accommodation Before & After Agreement

0123456789

10

Before After

Participants’ Health Decisions

0

1

2

3

4

5

6

7

8

9

Participants’ Lifestyle Decisions

0

2

4

6

8

10

12

14

16

18

20

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.

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.

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).

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)

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)

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.

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”.

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.

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.

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

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

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

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.

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

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.

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

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

Some things to improve cont.

• Required larger numbers to influence legislation & culture change.

• Tension between research & practise considerations

• Competing priorities

• Training for peer consultants

Decision Makers Radio Interview

Discussing benefits of participating

in SDM trial

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: cher.nicholson@bigpond.com