Supported Decision Making

Background

The ever-increasing number of aging clients present unique challenges to those providing them with legal services.   These pages will provide legal service providers with information and tools to help older adults ‘age in place’ – that is to live as long and as safe as possible within the  community,

When an older adult presents a situation where they seem to be at risk and unable to protect themselves, a natural and well-meaning impulse is to start proceedings to have that person moved to a care facility, or to have family members start guardianship proceedings.

For advance planning – an EPOA & RA9

But less restrictive alternatives are available.

Helping these clients to retain as much autonomy as possible, and the be ‘causal agents’ in their lives is an important component of mental health.

When you have a client with limited capacity, it is important that they are supported to make their own decisions whenever possible.

Supported and assisted decision-making is valued for significantly enhancing the self-determination and dignity of people with compromised mental capacity, allowing them to participate in decisions that impact their lives in circumstances where they might not otherwise have the legal or cognitive capacity to make decisions independently.

From BCLI Backgrounder – Supported Decision Making

Supported decision-making can help people:

  • Understand information, issues, and choices;
  • Focus attention in decision-making;
  • Weigh options;
  • Ensure that decisions are based on their own preferences
  • Interpret and/or communicate decisions to other parties.

(Salzman, 2011)

Supported decision making should always be tried before commencing guardianship (committeeship) proceeding.  Guardianship should always be the last resort.

As the Code of Conduct reminds lawyers:

CLIENTS WITH DIMINISHED CAPACITY

3.2-9  When a client’s ability to make decisions is impaired because of minority or mental disability, or for some other reason, the lawyer must, as far as reasonably possible, maintain a normal lawyer and client relationship.


What is supported decision making (“SDM”)?

‘Supported decision making’ is when people with disabilities use friends, family members, and professionals to help them understand the situations and choices they face, so they may make their own decisions without need of a court appointed guardian or ‘committee.’

“Understanding the Lived Experiences of Supported Decision-Making in Canada“

SDM can involve, as appropriate:

  1. Informal support
  2. Written agreements, like Powers of Attorney and Representation Agreements, identifying the support needed and who will give it
  3. Formal Micro-Boards and Circles of Support

(Martinis, Blanck, and Gonzalez, 2015).

A Definition

Supported decision-making is: “a series of relationships, practices, arrangements, and agreements, of more or less formality and intensity, designed to assist an individual with a disability to make and communicate to others decisions about the individual’s life.”

 – Robert Dinerstein, quoted in the CELC’s “Understanding the

Lived Experiences of Supported Decision-Making in Canada“

We all do it….

“Everybody needs support from others in making important as well as less important decisions concerning different areas of life.Indeed this is obvious; we all need the knowledge and expertise of people around us because we do not have all the talents and skills which are relevant to make every kind of decision possible in life…The type and amount of assistance which we all, as individuals, need when making decisions and choices can be different, but in reality we all make choices and decisions based on the supported decision-making model.”

– Mental Disability Advocacy Centre (MDAC)

Other Cultures and SDM

“Many cultures have a more communal sense of decision-making and supported decision-making may be a good option for those with these types of cultural norms,”

from “Understanding the Lived Experiences of Supported Decision-Making in Canada“

 

SDM and Older Adults

Older adults who have degenerative diseases of aging can benefit from supported decision-making in the early stages of their disease; however, there is a strong tendency to move to substitute decision-making for this group.

Substitute decision-making is easier and more convenient for many in the older adult cohort. For older people with degenerating capacity issues, timeliness of decisions is often of the essence.

Supported decision making is generally viewed as an interim measure only, until the adult is able to put substitute decision-making regimes in place.

– from “Understanding the Lived Experiences of Supported Decision-Making in Canada“

Incapacity and SDM

Supported decision-making does not require a finding of lack of capacity.

In fact, the intent of a supported decision-making arrangement is to avoid any such finding or assessment (or indeed to increase capacity).

The focus of supported decision-making is not on the presence or lack of particular mental attributes, but on the supports and accommodations that can be provided to assist individuals in exercising control over decisions that affect them.

Support with vs Supported

There are those who argue for a distinction between ‘support with‘ decision making, and supported decision making.  They argue the latter can actually result in increased capacity, and suggest we need to rethink our understanding of legal capacity to take into account the effect of supported decision making.   This is based on studies that shows people who have been found to be incapable, but with supported decision making in place they are then found capable.

Support with Decision Making

Supported Decision Making

  • Offer support to person unable to decide independently
  • Person’s capacity or decision-making skill is assessed individually
  • Full potential is not realized

 

  • Offer support to person unable to decide independently
  • Redefines decision making as interdependent
  • Process results in greater legal capacity

 

– Browning, Bigby and Douglas – Supported Decision Making: Understanding How its Conceptual Link to Legal Capacity is Influencing the Development of Practice

3 main types of support?

It is suggested there are three main types of support required by the CRPD.  These are supports to:

  • assist in formulating one’s purpose, to explore the range of choices and to make a decision;
  • engage in the decision-making process with other parties to make agreements that give effect to one’s decision (when the decision requires this); and,
  • act on the decisions that one has made, and to meet one’s obligations under any agreements made for that purpose.

– Bach and Kerzner (2010)

continuum-of-decision-making


Some Relevant BC Statute Provisions

There are provisions in legislation that discuss how we need to foster independence, suggesting supported decison making rather than substitute decision making whenever possible.

 

Patient Property Act

18(2) – “A committee must, to the extent reasonable, foster the independence of the patient and encourage the patient’s involvement in any decision that affects the patient.

Power of Attorney Act

19(3) – “…foster independence and encourage the Adult’s involvement in decision making, to the extent possible…”

Representation Agreement Act

7(1) – “…an adult may authorize his or her representative to help the adult make decisions.”

(2) When helping the adult to make decisions or when making decisions on behalf of the adult, a representative must

(a) consult, to the extent reasonable, with the adult to determine his or her current wishes, and

(b) comply with those wishes if it is reasonable to do so.

Adult Guardianship Act

Guiding principles

2  This Act is to be administered and interpreted in accordance with the following principles:

(a) all adults are entitled to live in the manner they wish and to accept or refuse support, assistance or protection as long as they do not harm others and they are capable of making decisions about those matters;

(b) all adults should receive the most effective, but the least restrictive and intrusive, form of support, assistance or protection when they are unable to care for themselves or their financial affairs;

(c) the court should not be asked to appoint, and should not appoint, guardians unless alternatives, such as the provision of support and assistance, have been tried or carefully considered.

Presumption of capability

3  (1) Until the contrary is demonstrated, every adult is presumed to be capable of making decisions about the adult’s personal care, health care and financial affairs.

(2) An adult’s way of communicating with others is not grounds for deciding that he or she is incapable of making decisions about anything referred to in subsection (1).


Supported Decision Making Agreement

sdm-agreementDeveloping a supported decision making agreement:

  • provides education about decision making;
  • recognition of how each individual makes decisions; and,
  • how support can best be provided for that person

Decision Making

  • People vary in the amount of evidence they require to make a decision,
  • Also their level of analysis as opposed to the use of intuition
  • A supporter will need some insight into how their own way of thinking may vary from the person they will support

SDM Agreement in s7 RA

Could provide for multiple supporters

Supporters could be identified to only provide support in certain areas, and excluded from others.

Should/must require a monitor if supporters are authorized to help with finances – monitor should not also be a supporter (rep could be monitor)

Representative could act as a supporter, and then ‘switch hats’ to become representative

Possible Wording – s. 7 RA w/ SDM

SUPPORTED DECISION MAKING

While I am able with support to do so, I want to have people I trust help me make decisions about the following:

• my personal care;

• the routine management of my financial affairs, as set out in the Representation Agreement Regulation;

• major health care and minor health care, as defined in the Health Care (Consent) and Care Facility (Admission) Act;

• obtaining legal services for me and instructing counsel to commence proceedings, except divorce proceedings, or to continue, compromise, defend or settle any legal proceedings on my behalf.

The people who will help me are called my supporters. The representative(s) named shall first act as a supporter while I am still capable with support. I can say what kind of help my supporters will give me. My supporters are not allowed to make choices for me. To help me with my choices, my supporters may:

• Help me find out more about my choices;

• Help me understand my choices so I can make a good decision for me; and,

• Help me tell other people about my decision.

Consent of Supporter

I,____________ consent to act as ______________’s supporter for financial decisions under this agreement.  I agree to provide financial records to the supported decision-making monitor (listed below) every month.  I understand that my job as a supporter is to honor and present the wishes of the adult.  I understand that my support might include giving this person information in a way he/she can understand; discussing pros and cons of decisions; communicating the person’s choice. I know that I may not make decisions for this person. I agree to support this person’s decisions to the best of my ability, honestly, and in good faith.

Facilitator?

One can consider naming a ‘facilitator.’  This could be the named representative’s role while providing supported decision making.  A facilitator has two main tasks:

  1. To support the adult in the process of establishing the network
  2. To assist the supporters to respect and consider the choices of the supported person, to provide him/her with support.

What Seems to Work Well

Often, more than one representative would be named, most often three in total.

Participants in supported decision-making described a mechanism to help representatives make decisions by using a two out of three consensus. This approach was seen as beneficial to protect both the interests of the supported decision-maker as well as a mechanism to relieve stress from the representatives.

Case scenarios outlining how the supported decision-maker would like the representative to act may also be helpful

– from “Understanding the Lived Experiences of Supported Decision-Making in Canada“

Who to Choose?

Spouses and siblings were noted as common sources to turn to for advice.

Some participants had a core group of five or more supporters with only one or two appointed as designated representatives.

Others described receiving help indirectly from their family—not with making the decision itself but with living with the results of their decision.

For agreements that worked well, the supported decision-maker was at the centre of all decisions.

Representatives, friends, family and healthcare professionals would all surround the supported decision maker.

– from “Understanding the Lived Experiences of Supported Decision-Making in Canada“


Issues to watch out for

A new area – new issues to watch out for.

`Slippage`

`Slippage` – is using supported decision-making systems to actually engage in substituted decision-making.  Representatives under RAs have engaged in both substitute and supported decision-making utilizing the same representation agreement, yet strongly characterizing their relationship as supportive in nature.

Slippage has been called a more “insidious“ version of substitute decision- making, in that it claimed to be the will of the person with intellectual disabilities, but was in fact, the will of the other person imposed and rebranded.

– from “Understanding the Lived Experiences of Supported Decision-Making in Canada“

SDM & Ageism

Increased education, normalization and better systems can bring about social change which will encourage reciprocal values exchanges between adults with diminished capacity and other adults in the community.

However, these positive relationships can be inhibited by the effect of widespread attitudinal barriers, such as ageism or ableism, thus negatively impacting the prospects of effective implementation of supported decision- making.

– from “Understanding the Lived Experiences of Supported Decision-Making in Canada“

Getting Volunteer Supporters

The farther away one goes from a close familial relationship, the harder it may be to recruit supporters and engage in supported decision-making.

In other fields, such as in criminal law circles of support, some evidence suggests that the idea of surrounding, supporting and monitoring another adult is good in theory, but unless it is underpinned by strong relationship bonds, that volunteer enthusiasm soon wanes.

– from “Understanding the Lived Experiences of Supported Decision-Making in Canada“

Lack of Uptake

Overall, supported decision-making pursuant to representation agreements have not had a wide adoption.

People outside of the disability community, particularly seniors and people with psycho-social or brain injury, prefer an easier-to-understand and perhaps a more “legal” framework.

There is a sense that the philosophy of supported decision-making is a good one to have imbued in law, but that the system is not yet one which people can yet execute with ease or confidence.

For people who are not overly worried about abuse, formalities and liabilities, supported decision-making occurs “off the books” in terms of legal documentation. It is a practice that occurs in families and circles of supporters on an everyday basis.

– from “Understanding the Lived Experiences of Supported Decision-Making in Canada“

OAs, RAs and Elder Abuse

Indeed, while there may be value in the early months or years for older people with diseases like dementia, that value deteriorates with their condition and actually can become a tool of abuse.

The question remains unresolved as to whether a certain minimum level of capacity is required to enjoy the possible benefits of supported decision-making.

– from “Understanding the Lived Experiences of Supported Decision-Making in Canada“

 

Differing Concerns

 

Concerns of Younger Disabled Concerns of Older Adults with dementia
  • building functional capacities
  • looking to support positive ways of increasingly ability to:
  • manage money
  • engage with employment opportunities and
  • consider future options for marriage or children
OA’s may be most concerned about

  • health and personal care planning,
  • financial arrangements such as wills or use of life-long saved assets
  • quality of life
  • end of life decisions

 

 

Lack of Resources and Training

Many people have ideas of what they think supported decision-making is, but no one really knows how to do it.

There is a complete lack of teaching for supported decision-makers around best practices, expectations and pragmatic skills.

There are no toolkits, educational standards or best practices for how to do supported decision-making specifically.

“we like having it but we do not really know how to use it well”

– from “Understanding the Lived Experiences of Supported Decision-Making in Canada“


Resources

There are some resources available:

  • Nidus – various fact sheets on EPOA RAs, roles & responsibilities, revoking & resignation: nidus.ca
  • Public Guardian & Trustee –  It’s Your Choicegood thorough plain language advance planning booklet
  • Ministry of Health

• “My Voice” – personal planning workbook including EPOA, RA’s and Advance Directive:

English Version (PDF)

Punjabi Version (PDF)

Simplified Chinese Version (PDF)

My Voice Advance Care Planning Guide Quick Tips (PDF)

Aboriginal Health Advance Care Planning: Respecting Aboriginal Ceremonies and Rites (PDF brochure)

                • also advance planning videos on YouTube:

English

English with Punjabi subtitles

English with Simplified Chinese subtitles

                • Incapacity Planning webpage has downloadable pdf forms for basic EPOA, s7 & s9 RA’s: Incapacity Planning Forms

             • When I’m 64 – Controlling Your Affairs – booklet on wills, EPOA &RAs (new Aug 2014)

• Power of Attorney  – booklet on preparing EPOA (updated – October, 2015)