Supported Decision Making Trial

Funded By SA Office Public Advocate & M S McLeod Benevolent Fund - Julia Farr Group

DANA CONFERENCE 2012

Cher Nicholson

Co-coordinator of South Australian Supported Decision Making Project

Outline

• UN Convention and Supported Decision Making – Background.

• Capacity Considerations.

• S.A. Supported Decision Making Trial.

• Use of Supported Decision Making.

• Graphs of findings to date.

• Summary.

Freedom

• Positive freedom – Opportunity – Fulfill ones own goals and potential – Can rely on provision of treatment, rehabilitation and accommodation – Can depend on the provision of safe accessible services • Negative freedom - Freedom from unnecessary direction, control, detention, restraint, seclusion - Spectrum of intervention

Control vs. Autonomy

“

At the heart of the jurisdiction in a contradiction. The ideology of freedom is linked to a set of legal tools to restrict freedom through the appointment of substitutes. Guardianship laws use a modern rhetoric of personal rights promoting autonomy, fostering independence, and assisting citizens to participate in social life. And yet the main task of guardianship forums is to strip citizens of rights, entrust proxies with the exercise of legal decision-making, and sometimes authorise incarceration through physical and chemical means. The strange paradox of using coercive forms to achieve emancipator purposes raises practical questions about what could possibly constitute successful intervention in this Alice in Wonderland world? (Carney and Tait, 1997)”

Article 12 Equal recognition before the law

• Persons with disabilities have the right to recognition as persons before the law.

• Persons with disabilities enjoy legal capacity on equal basis with others in all aspects of their lives.

• Persons with disabilities access the support they may require in exercising their legal capacity.

• All measures that relate to the exercise of legal capacity are safeguarded to prevent abuse; they respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person’s circumstances, apply for the shortest possible time and are subject to regular review by a competent, independent and impartial authority or judicial body.

Timelines And Process for UN CRPD Development of Article 12

• • • • • • •

2001

effect.

-The drafting of UN CRPD commenced when the government of Mexico sponsored a General Assembly (GA) resolution calling for an Ad Hoc Committee (AHC) to be formed to this

July 2002 and December 2006

- Over a period of just 4 years and at 8 meetings of the AHC, the international community discussed, debated and drafted the UN CRPD.

January 2004

– The AHC created a Working Group to pull together a draft text and considered amendments by delegates in its sessions.

August 2006 -

The main body of the Convention and its Optical Protocol were finalised and

December

submitted to a Technical Drafting Committee. One of their responsibilities was to ensure it had the same meaning in the 6 official languages of the UN.

13 December 2006 -

UN CRPD and its Optional Protocol were unanimously adopted by the GA, making it

“the most rapidly negotiated human rights treaty in the history of international law”

(UN Secretary General, Kofi Annan). Another first was that people with disabilities, the key stakeholders, were at the centre of negotiations and drafting of the UN CRPD.

30 March 2007

– Once adopted, a Convention is opened for signature and on this first day 81 countries signed the UN CRPD –but this did not commit them to implement it. Ratification through a legal process, usually by the Parliament of the signatory country, is required. After 20 countries have done so, a Convention comes into force and the signatories become a

State Party

to a Convention. Once in force, State Parties must implement it.

Article 16 Freedom from exploitation, violence and abuse

1. States Parties shall take all appropriate legislative, administrative, social, educational and other measures to protect persons with disabilities, both within and outside the home, from all forms of exploitation, violence and abuse, including their gender-based aspects.

2. States Parties shall also take all appropriate measures to prevent all forms of exploitation, violence and abuse by ensuring, inter alia, appropriate forms of gender- and age-sensitive assistance and support for persons with disabilities and their families and caregivers, including through the provision of information and education on how to avoid, recognize and report instances of exploitation, violence and abuse.

disability-sensitive.

States Parties shall ensure that protection services are age-, gender- and

Article 16 [cont]

3. In order to prevent the occurrence of all forms of exploitation, violence and abuse, States Parties shall ensure that all facilities and programmes designed to serve persons with disabilities are effectively monitored by independent authorities .

4. States Parties shall take all appropriate measures to promote the physical, cognitive and psychological recovery, rehabilitation and social reintegration of persons with disabilities who become victims of any form of exploitation, violence or abuse, including through the provision of protection services. Such recovery and reintegration shall take place in an environment that fosters the health, welfare, self-respect, dignity and autonomy of the person and takes into account gender- and age-specific needs.

5. States Parties shall put in place effective legislation and policies, including women- and child focused legislation and policies, to ensure that instances of exploitation, violence and abuse against persons with disabilities are identified, investigated and, where appropriate, prosecuted .

Equality and non-discrimination

Article 5

1. States Parties recognize that all persons are equal before and under the law and are entitled without any discrimination to the equal protection and equal benefit of the law.

2. States Parties shall prohibit all discrimination on the basis of disability and guarantee to persons with disabilities equal and effective legal protection against discrimination on all grounds.

3. In order to promote equality and eliminate discrimination, States Parties shall take all appropriate steps to ensure that reasonable accommodation is provided.

4. Specific measures which are necessary to accelerate or achieve de facto equality of persons with disabilities shall not be considered discrimination under the terms of the present Convention.

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.

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.

Considerations

•

Capacity versus Vulnerability

•

Support versus Assistance

Other Considerations

Examples of other forms of

“

incapacity

”

Alternative response to Guardianship

Family incapacity (e.g. inability to make informal arrangements work due to conflict between family members) Mediation to avoid guardianship hearing and order

Service incapacity

(e.g. limited ability by others to offer suitable accommodation options or necessary professional care)

Advocacy

to provide accommodation options professional assessments, care and accommodation Service and Community incapacity to assist a person make their own decisions Community incapacity to protect vulnerable people

Assisted and Supported Decision Making

Adult protection responses: Based on UK- and US-style policies or legislation that offer a prompt practical response that seeks to avoid guardianship.

Incapacity of justice system

to deter perpetrators of abuse on vulnerable people A

disability justice strategy

to be applied by police, prosecutors and the courts that deters perpetrators.

Economic incapacity and social exclusion.

guardianship more likely to be poor with less access to resources People under

Practical social work assistance

for people who are poor or disadvantaged and unable to access community resources.

Welfare-based models

Models

Rights-based model

Capacity is defined in welfare terms Purpose of appointment: protection Appointment can be made even when there are no decisions to be made Lower threshold for making an order (underlying philosophy — benign paternalism) Less emphasis on the presumption of capacity Plenary (full) orders are used more often Capacity is decision specific Purpose of appointment: substitute decision making Appointment made in the context of decisions Higher threshold for making an order (underlying philosophy — rights-based legalism) Emphasis on the presumption of capacity Plenary (full) orders are discouraged

Models of Guardianship

• In addition, another factor leading to an increased recognition of the need for orders has been the greater importance placed on the identification and response to restrictive practices now than in the past. This has led to people requiring orders, in particular guardianship with special powers (s32) when they were not on orders but should have been.

• • •

Parliament’s intention

The current guardianship system emerged from a review of the former Guardianship Board established under the

Mental Health Act 1977.

undervalued the potential role of families and carers.

This 1989 review identified problems to be solved such as a lack of consideration of alternatives to guardianship, because the Board had assumed that alternatives are explored prior to applications being submitted, which was not always the case. The previous system inappropriately restricted and South Australia is considered to have a welfare approach.

Forms of incapacity and response to Guardianship

• • • • • •

What is least restrictive?

The

Guardianship and Administration Act

restrictive of a requires that decisions be the least person’s rights and personal autonomy as is consistent with proper care and protection. However, ‘least restrictive’ is not defined. It is likely that what is seen as least restrictive will vary according to the eye of the beholder.

For example, in the area of mental health, what is seen as least restrictive can vary between policy makers, clinicians and consumers (Clisby and Starr, 2007). It is reasonable to apply this conclusion about what is seen as least restrictive to guardianship as well as mental health practice. Whether or not a limited or full guardianship order is seen as least restrictive may also be a matter of perception.

This is why one of the three principles in the what is least restrictive. It states:

Mental Capacity Act 2005(UK)

is so potentially useful. In the context of making a guardianship appointment, it defines

A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.

Annual Report 2010 –2011 | Guardianship and Administration Act 1993

.

A Definition of Decision Making

THE PROCESS OF EXAMINING YOUR POSSIBILITIES AND OPTIONS, COMPARING THEM AND CHOOSING A COURSE OF ACTION.

DO YOU KNOW HOW MANY DECISIONS AN AVERAGE PERSON MAKES PER DAY?

There are so many decisions to make about 35,000 for an average adult each day [Approximately 200 are about food!].

Some of these are logically thought out but most are made at an instinctual level, using a sense of emotion or vaguely defined likes and dislikes .

Decision Making

•

The thought process of selecting a logical choice from the available options .

•

When trying to make a good decision , a person must weight the positives and negatives of each option, and consider all the alternatives. For effective decision making, a person must be able to forecast the outcome of each option as well, and based on all these items , determine which option is the best for that particular situation.

Decision Making

Steps in Decision Making

Collins 2004 believes there is 3 steps in decisions: • 1. Benefits of decision. • 2. Risks of decisions.

• 3. Strategies to + benefits or – risks.

• He also talks about reseasonableness and balance of risks – benefits.

Process of Decision Making

The process of decision making is one of the most complex mechanisms of human thinking, as various factors and courses of action intervene in it, with different results.

Orasanu and Connolly (1993) define it as a series of cognitive operations performed consciously, which include the elements from the environment in a specific time and place. Narayan and Corcoran-Perry (1997) consider decision making as the interaction between a problem that needs to be solved and a person who wishes to solve it within a specific environment.

PROCESS OF DECISION MAKING

Factors in Decision Making

Several factors influence decision making. These factors, including past experience (Juliusson, Karlsson, & Gӓrling, 2005), cognitive biases (Stanovich & West, 2008), age and individual differences (Bruin, Parker, & Fischoff, 2007), belief in personal relevance (Acevedo, & Krueger, 2004), and an escalation of commitment, influence what choices people make. Understanding the factors that influence decision making process is important to understanding what decisions are made. That is, the factors that influence the process may impact the outcomes.

Summary of Decision Making

• Information – including risks and benefits.

• Values – importance of various pieces of information.

• Decision making context – broader aspect of a person’s life – life-style impact.

• Preferences for each of the options – can be related to a range of factors including age, knowledge, culture.

Supported Decision Making

• Recognition of individual variation in how decisions are made.

• Understanding of risk.

• Different support needs.

– The significance of impulsivity and time.

– Recognise the risk with the long term gains.

• Communication of risk information.

Aims of the 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 and 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.

SA Supported Decision Making Trial

• Supported Person • Supporter • Monitor • 20 people alternatives to guardianship • 20 people early intervention + further approval for 10 (Health Ethics)

The Supported Person: PARTICIPANT

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.

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.

TRY TO SUPPORT AND NOT RESCUE Rescuing is only short term whereas a supporter sees longer term results

• • •

Listens Respects Reflects

THE SUPPORTER:

• • •

Explores Assists Empowers

TRY TO SUPPORT AND NOT RESCUE Rescuing is only short term whereas a supporter sees longer term results THE RESCUER:

• • • •

Gives Advice Controls Knows Best Disempowers

• • •

Jumps to Conclusions Doesn’t Listen Talks A Lot

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]

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.

Participants’ Reasons for wanting SDM

• End informal arrangements.

• To take back control of one’s life.

• Provide for decision support.

• Improve the quality of support.

• Alternative to guardianship.

• Family & friends felt that supported person had a framework to work for them in the future.

• Services would recognize their decision with choosing a supporter/s.

Practice Considerations

What Information to provide to Agencies: • When, where and how much.

• Agency response to SDM.

• Rights & responsibility basis.

• Not crisis or problem solving driven.

• Selling the risk - dignity of risk.

• New model acting in expressed wish

not

best interest.

Practice models

• Strength based - Narrative systems theory.

• SRV theory. • Gather Model.

• Person Centred.

Narrative – Strength Based

• Works as re-enforces positives and builds on existing knowledge. “I can do it” approach.

• Re-enforces the alternative story. • Engages with existing story of participants’ life to notice exceptions.

• Works with future hopes and expectations.

• Builds relationships.

Person centred

• SDM is rights based so is ideally suited to a person centred approach.

• Possible tensions: 1. Family.

2. Guardianship.

3. Agencies.

4. Other Networks.

5 Duty of care / OH&S issues.

SDM Work Flow Chart

Mediation / Counselling Agency Voluntary action

No

SDM Information

Employ

Employ Facilitator community networks, media and supported work places by presentations to staff and informal chats to potential participants Consent to follow-up & evaluation by Facilitator Safeguards Discuss during Supervision Participant keeps diary of all Facilitator maintains decisions. fortnightly contact

Yes Go onto Agreement Declined - No further action

No Facilitator contacts all Participants' working for common goal.

consent Participant

Opportunities for Improvement or Success may be limited

• • • •

Results may expectations.

There are many challenges of working with vulnerable people.

not and fit or with our disabled These people are more likely to be frustrated and disappointed.

All parties view of success may be different.

–

Participant, Supporter(s), Monitor & Project

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 Coordinator / Volunteer Supporter / Monitor Participant / Supported Person

Data to date from the SA Trial

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

Ages of Participants on Agreements

6 5 8 7 4 3 2 1 0 18 to 19 20 to 29 30 to 39 40 to 49 50 to 59 60 to 69 70 to 79

Ages of All Clients

0 2 4 16 14 12 10 6 8 18 - 19 20 - 29 30 - 39 40 - 49 50 - 59 60 - 69 70 - 79

Motor Neurone I D + Physical I D + Motor Neurone I D + Hydrocephalus I D + Autism Intellectual Disability Genetic Foetal Alcohol Syndrome Brain Injury + Blind Brain Injury + Deaf Brain Injury Autism + Motor Neurone Autism

Agreements - Types of Disability

people referred 0 5 10 15 20 25

All Clients - Types of Disability

Brain injury - trauma Motor neurone Intellectual Disability Autism Spectrum Disorder Intellectual Disability + Physical Foetal Alcohol Syndrome Intellectual Disability 0 1 2 3 4 5 6 7 8

Agreements:

14 12 Male Female

28

All Clients

23 Male Female

18 16 14 12 10 8 6 4 2 0 Wi do we r

Agreements’ Relationships

Si ng le Divorced De -Fa cto In Rela tionship Married

45 40 35 30 25 20 15 10 5 0 W ido we r

2

All Clients’ Relationships

39

Si ng le Di vo rc ed

2 4

De -Fa cto In Re lat ion sh ip

3

Ma rri ed

1

Agreements’ Supporter Choice

11 10 9 8 7 2 1 0 6 5 4 3 Fr ie nd Sp ou se Pa re nt Si bl in g G ra nd pa re nt So n/ D au gh te r Ex te nd ed Fa m ily In tr od uc ed N on e

Participant Accommodation

10 9 8 7 6 5 4 3 2 1 0 G ro up H ou se A ge d C ar e Fa m ily SA H Pr T iv at eR R en es ta id l en tia l C ar e Fr ie nd s Sh ar ed H ou se

All Clients’ Accommodation

18 16 14 12 10 8 6 4 2 0 Gro up Ho use Ag ed Car e Fam ily SA HT Priv ate Re ntal Re sid en tia l Frien ds Sh are dH ou se Ho me link

7 6 1 0 3 2 5 4 Cl us te r

Participants’ Accommodation Decisions

SA HT Gr ou p Pr iva te Re si de nt ia l Re pa irs

Participants’ Health Decisions

5 4 3 2 1 0 9 8 7 6 Me dic al tes ts Tr ea tm en ts Ho sp ita l Me dic ati Co on mm un W ica eig tio ht n T ec hn olo gy To ile tin g

Participants’ Lifestyle Decisions

20 18 16 14 12 10 8 6 4 2 0 Se cu rit Re y lat ion sh ips Pa re nt ing W or k Ho lid ay Fu ne ral Le ga l Ce nt Ch re lin oo k sin g S up po rt

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.

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).

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 (Cont. 1)

• Alcohol use • Travel (Aged care facility) (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

• 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”.

SDM in Guardianship

• When a person is under guardianship, the final accountability for making a decision rests with the appointed guardian. • A supported decision making arrangement can be used to help a person formulate their expressed wish. • Running SDM along side a short term Guardianship Order may make a way for the Order to be revoked.

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.