Skip to main content
#
L.I.S.A Inc
 
LISA... is a parent support and lobby group, for parents and families with a family member having an intellectual or multiple disability, and living in a supported accommodation group home in the State of Victoria, Australia.
Find What You Need
 
Bureaucrats and Ideologues claim no 'need' for vulnerable people to be properly represented ...

The Fault Line in the Decision Making Debate 
Supported Decision Making versus Substitute Decision Making
A Jackson Ryan Partners Challenge Paper - 6 August 2015

Abstract

This paper addresses the increasing focus on what is defined as ‘supported decision making’.  The paper expresses concern that although the primary driver for this focus is the legal concept that all people have an equal right before the law, it is the extension of this that presents as a major concern.  This extension promotes the principle that - if the right types and levels of support are provided, then each and every person with a disability, without exception, will be able to make or contribute to decisions affecting him or her.  This paper challenges this proposition. 

The writers argue that this ideologically driven position seeks to market the legal concept of equal rights while largely ignoring the realisms of ‘capacity’.  They also submit that even where some acknowledgment is given to capacity limitations, the cracks in the strongly promoted ideological position are then papered-over by introducing the concept of what in effect is the contradictory notion of ‘fully supported’.

The paper argues that by ignoring the significant limitation realities of some people with disabilities, in effect it is not then the individual with the disability who is making or even contributing to decisions affecting him or her.  The writers argue no matter how much the rationalisation, that in some circumstances it is the appointed or nominated ‘supporter’ who actually makes the decision.  

The paper notes that in promoting supported decision making there is a parallel push to do away with substitute decision making from the statutes.  It is further noted that this must be seen for what it is - ideological social engineering.  This is where there is an attempt to direct the thinking of all to accept the ideology that incapacity, no matter what the degree, can be overcome if the right amount and level of support is provided.

The paper notes an increased interest by some who have turned their minds to researching supported decision making or in some instances contrasting this with ‘support for decision making’.  Of particular import is the Australian Law Reform Commission’s Summary Report - Equality, Capacity and Disability in Commonwealth Laws (ALRC Report 124) released in November 2014.  Reference is also made to a recently released research report commissioned by Scope, entitled Supported Decision Making and Guardianship: Building Capacity within Victoria and as conducted by the Living with Disability Research Centre at La Trobe University; and a project undertaken by Victoria’s Office of the Public Advocate.

This paper challenges the reports associated with these initiatives and, in part, uses each to illustrate this paper’s principal submission that substitute decision making, as in guardianship, financial administration and Power of Attorney, must be retained in the statutes.  Further, that supported decision making, while having import for some, is not the panacea for all. 

Therefore, the paper argues that, no matter what august body makes them, research findings and recommendations that ignore the realities of capacity limitations and skews their sample groups to exclude those with significant limitations must be rejected.  The writers argue that where researchers and bodies such as the ALRC ignore or minimise the realities of capacity, then this creates a fault line in the debate about supported decision making.

An increasing focus

  1. Over recent years significant focus has been given to the concept of ‘supported decision making’.  To some degree this focus has been driven by what might be called the rights movement.  Article 12 of the United Nations Convention on the Rights of Persons with Disabilities has been referenced as a significant document by linking rights with the concept of ‘legal capacity’.

  1. Essentially, this has been done by promoting the concept of legal capacity as being the equivalent of ‘ability’ - This being, as in the ability to make decisions enforceable in law.  This therefore goes beyond what has previously been accepted as the right to have legal access or legal representation.  As a result, legal capacity has then been linked to the notion of supported decision making with an extension of this then being to make the call for supported decision making to be enshrined in legislation. 

  1. Underlining this call is the argument that if given the right level and type of support every person, no matter what their degree of disability or capacity limitations, has the capacity to be involved as an active participant in decisions affecting them. 

  1. By promoting supported decision making as one that expands the concept of legal capacity it is then argued by some that supported decision making as a legal imperative, should replace what is commonly known as substitute decision making.

  1. Supported decision making, although having been addressed by the ALRC and Victoria’s Law Reform Commission through various consultations, is now running the risk of being captured by the ever-spreading tentacles of academic researchers.  Certainly, it may be legitimate to argue that research should inform the debate concerning any proposed changes to the current legal framework of guardianship, administration and power of attorney.  This being, for example, by leaving things as they are, adding to them, or replacing them. 

  1. This paper argues that research, and ultimately research findings, only have value if they are not skewed, and in this case skewed in favour of supported decision making simply because of what is openly promoted as a necessary replacement for guardianship, administration and Power of Attorney.  Essentially, this means that the research must not be manipulated.  This being either as a result of the entry proposition – as in the proposal that if the right level and type of support is given all individuals are capable of contributing to all decisions affecting them.  Or, as a result of manipulating the samples comprising the research in a way that effectively excludes that cohort of individuals who have been assessed as having significant capacity limitations.

  1. Therefore, if the findings of research are to be accepted as having value, flawed research parameters must not be allowed to define the future of decision making simply by applying what has become an increasing reliance on “the research shows” argument. 

  1. If the research parameters fail the credibility test by not including a comprehensive sample of the target population then quite clearly the research does not prove or ‘show’ anything. 

  1. In the case of decision making options, credibility will only be demonstrated if those with significant capacity limitations are included in the research.  The indications to-date suggests this has not occurred.  Instead, an a priori approach appears to have been applied whereby the outcomes have been driven by a theoretical proposition targeting only those with higher levels of capacity rather than by empirical testing across the total of the target population, which must be all levels of disability.

  1. Two recent examples of the above is a project undertaken by the Office of the Public Advocate in Victoria that addressed the matter of supported decision making that only had 18 people with disabilities in the sample and where the participants in the sample group had verbal capacity.  The second relates to the research conducted by the Living with Disability Research Centre at La Trobe University that had only eight people with disabilities in its sample. 

  1. Each of these projects, by virtue of their small samples and each being limited to participants capable of expressing themselves at a level where their receptive and expressive communication capacity were well beyond the significant capacity limitations experienced by some people with disabilities, failed to test the application of supported decision making across the full spectrum of disability types, levels and capacity range.
  2. The writers contend research must maintain its roots in reality and not be biased by ideology.  They further therefore contend that if the research ignores the realities of capacity limitations and indeed fails to acknowledge this as a necessary entry condition of members of the sample, then a fault line of ignorance will, by exclusion, excise substitute decision making from the debate.  The writers argue the above examples missed the boat in relation to the sample spread, functional levels and number. 

  1. Yet, despite this, each has been used to suggest the findings constitute evidence supporting the proposition that supported decision making is the way forward for people with disabilities.

Definitions Language and Decision Making in Context

14.         In addressing what could be considered to be a new frontier for those seeking law reform including researchers, the following concepts and descriptors must be clearly defined and used accordingly:

  • Substitute decision making as in Guardianship, Administration and Power of Attorney
  • Supported decision making
  • Decision making support
  • Informal supports
  • Advocacy
  • Legal capacity

  1. In the context of the law, and therefore any proposition to change the law either by excising substitute decision making or including supported decision making, the writers argue the necessity of using precise language.  As such, they further argue that the language of ideology should not dictate the theoretical constructs of research by ignoring the legitimate language of legal capacity as associated with cognitive ability.

The basic premise

  1. The basic premise is that if the right level, type and availability of supports are provided then anyone, no matter what his or her cognitive capacity and associated limitations, will be able to provide input into decision’s affecting him or her.  As already noted, this being done via a person nominated to support that individual.

  1. The writer’s challenge this view as unmitigated nonsense.  They say that it totally ignores the reality of limitations.  They further argue that the following contexts provide examples of how the reality of limitations versus ideology, are brought to the fore.  The writers further contend this adds to the arguments why supported decision making cannot be allowed to dominate the decision making debate.

  1. Life support, where with significant developments in medical science, have provided the medical profession with the option of keeping people alive even though the individual would die without the support of a life-support system, provides one such example.  It is not uncommon in such circumstances for the individual who has been placed on life support to have no recognisable cognitive capacity or ability to express his or her feelings, wants or desires.

  1. Dementia provides another example.  Increasingly where people are living longer but at the same time conditions including dementia are becoming increasingly evident, the practical reality of this is that a person suffering from profound dementia does not have the cognitive ability to make his or her own rational decisions. This includes the person being unable to nominate another individual to act as a ‘supporter’ or ‘representative’.

  1. Cognitive or intellectual capacity – The ALRC seems to have studiously denied the relevance of this concept.  Instead, by creating a substitute term as in “decision making ability” the Commission has taken an ideological stance. The writers argue that in so doing the Commission seems to want to ignore the reality that there are people in our society who, for whatever reason, lack cognitive or intellectual capacity.  Thus, by virtue of a significantly reduced capacity they do not have the ability to process information and make informed rational decisions that may affect their lives, even when supported by others.

  1. In terms of mental impairment, our legal system already recognises that from time-to time there are individuals who, because of mental impairment, are assessed as being unfit to plead or to stand trial in a cases before the courts.  Under the proposal to legalise supported decision making and deny substitute decision making, a person currently in the second category would not be given the current protection provided by the law.  Instead, either through the provision of a supporter or a representative, such a person would be judged as being fit to plead and therefore fit to stand trial.

  1. There are of course many instances already existing within the law and commercial frameworks that recognise that incapacity disqualifies an individual from, for example, operating as a licensed financial services adviser, sitting on a jury or even something as commonplace as obtaining a driver’s licence.  The writers argue that it seems reasonable to conclude that those who framed these particular legislative provisions recognised, and accepted, that capacity limitations or indeed incapacity could not be ignored. 

  1. By seeking to turn this around and focus on the concept of decision making ability as constituting an ability to decide albeit it with support but regardless of capacity, the writers submit that the ideology of rights runs the risk of compromising common sense law by instead laws being made that are not based on practical realties.

Ideology – the driver

  1. A number of terms that appear to be strategic, or indeed manipulative in their intent, are at times used to provide a rationale for the ideology that all people have capacity if the right supports are provided.  The ideology appears to be based on what is now commonly referred to as the social model or social approach to disability.  This approach denies the existence of impairment, despite an individual’s impairment being an essential element in the World Health Organisation (WHO) classification of functioning, disability and health.  Instead, it purports that it is the limitations imposed by the environment that creates the limitations on an individual.  The ideology therefore promotes the notion that with the right level of support any individual can function to a level as though the person does not have impairment.  While the writers acknowledge that an individual’s functioning can be enhanced if the right levels and types of support are provided, they also argue that for those where the level of impairment is so pronounced, no amount or type of support will compensate.  Not to accept this reality and instead seek to manufacture an arrangement that satisfies an ideology is nothing short of seeking to engineer the legal framework to satisfy the ideology.

  1. In an attempt to support the ideological stance, with advocates replacing substitute decision making with supported decision making, the writers note that particular terminology has over recent years, become the bywords for disability reform.  This terminology includes words and concepts such as inclusion, participation, rights, dignity and autonomy.  While each of these words and concepts are now part of the disability lexicon, nonetheless it is a bridge too far to suggest they should be seen in isolation from the context in which they are used. 

  1. In other words, the writers submit that to use such terminology and concepts as though they apply equally to all situations requires an all-encompassing interpretation.  As an example, the writers suggest that inclusion and participation cannot be simply taken to mean that this is a one-way process and therefore by providing an individual with the opportunity to access the community, whatever indeed that may mean, inclusion and participation will automatically occur.  Clearly, differing environments, along with differing levels of cognitive capacity, and indeed physical capacity, along with social and cultural differences, can lead to differing levels and types of inclusion and participation.

  1. If inclusion and participation were such a straightforward process to activate, then clearly our society would not have the problems that occur in relation to the inclusion and participation of for example, our aged, new arrivals from overseas, indigenous Australians or individuals that may be of a particular religious or sexual persuasion.  Clearly, it is the context and the role that individuals play within the community which determine inclusion and participation.  The writers argue that notwithstanding the use of the above terms, the significant terms and concepts applicable to decision making are the concepts “ability” and “capacity”.

  1. Any attempt to ignore or replace the concept of capacity with that of ability is a false dichotomy when considered in the context of an individual's mental or cognitive level of functioning to inform, understand or enact a decision.  If being able to be informed, to understand and enact are to occur legitimately then this infers the individual has the capacity to apply them along the full spectrum of supported decision making.  By seeking to enshrine in law the concept of supported decision making, this entails accepting supports would be on a continuum from the most minimal level of support to the maximum level, which has been defined as ‘fully supported’ and is in effect equivalent to substitute decision making.  The significance of the continuum of supports resides in accepting all individual have the ability or capacity to understand the information provided to them and to make an informed decision or choice.  The writers contend that by its very nature a continuum of supports, at some point of the continuum, will have its limitations for those individuals whose capacity precludes them from participating in decision making.

  1. As if to strengthen the argument for supported decision making to be enshrined in legislation and the associated discontinuation of substitute decision making, a number of other terms are used to convey an emotive argument.  This is not only misleading but is dishonest.  Terms including equality, paternalism and protection seem to have the intent of conveying the message that unless supported decision making is enshrined in legislation and substitute decision making deleted from the statutes, then individuals, regardless of their ability or capacity to understand and make informed decisions or choice, may well be treated as lesser individuals in the eyes of the law.

  1. Again, the writers argue that to seek to impose on individuals who do not have the ability or capacity to understand and make informed decisions or choice, by virtue of their not having access to substitute decision making, will, in reality, deny them the very things that those arguing for supported decision making alone will provide.  Given this, the writers further submit that those who advocate the replacement of substitute decision making with supported decision making only, is likely to have the unintended consequence of actually denying many individuals their right to choice by way of that available through a substitute decision-maker.

  1. Associated with ideology is the matter of the identification or nomination of a supporter or a representative and the determination of the How, the Who and the When.  That is how, or what process, is to be established to identify how a supporter or representative may be chosen.  So far in the debate, those flying the flag for supported decision making via supporters and representatives have been bereft of practical solutions in addressing such necessities.  Instead, they have taken the easy option and rather than provide practical suggestions they avoid any suggestions that might inadvertently highlight the weakness of the supported decision making paradigm.  Therefore, on the matter of who might become, or nominate to act as a supporter or representative, or alternatively how such people might be nominated, there has been silence on this issue.  Also in terms of when a supporter or representative might be nominated there has been silence. 

  1. The writers submit this failure highlights what can only be described as the gap between ideology and reality.

Article 12 of the UN Convention

  1. Article 12 has been applied by some in making a quantum leap by arguing it is necessary to embrace supported decision making as the legal framework to provide equal recognition before the law and therefore providing legal capacity for people with disability.  The promotion of this approach in effect promotes the abolition of substitute decision making, and instead advocates for legalising what are being described as “supporters” and “representatives”.

  1. The writers categorically challenge the abolition of substitute decision making.  They argue that to adopt such a singular view in relation to the concept of rights and choice and the suggestion that the current arrangements are outmoded is ill considered.  This being particularly given the push to abolish substitute decision making appears to be driven by ideological purity.

  1. The purist approach taken in relation to Article 12 proposes a parallel action of the abolition of substitute decision making regimes and the development of supported decision making alternatives.  Despite this however, this approach is not unanimous.  Some countries, including Australia, New Zealand, Norway, Denmark and Germany have not uncritically accepted Article 12.

  1. The writers provide the following extracts from a paper submitted by the Federal Republic of Germany, in so doing the writers submit these comments have import for their view of substitute decision making and supported decision making.

“Germany does not share the Committee’s basic assumption that Art. 12 of the Convention affords unlimited capacity to exercise legal rights and duties to all persons with disabilities. All persons have, as affirmed by Article 12 paragraph 1 of the Convention, legal capacity in the sense of legal standing. But not all persons can exercise those rights and duties”…

"While sharing the view the provision of support for persons with disabilities is the best possible way to help them exercise their rights, Germany remains convinced that there are situations in which persons with disabilities simply are not able to make decisions even with the best support available ... the Convention could not and in Germany's view does not rule out the possibility of substitute decision–making in some cases."

http://www.ohchr.org/EN/HRBodies/CRPD/Pages/DGCArticles12And9.aspx

A manipulation of language and the legal and practical implications

  1. Even without any debate about the legitimacy of supported decision making, the writers argue that to enshrine it in legislation to the degree proposed would require significant changes to a broad range of existing laws.  They argue that any such action is unnecessary.  This being given that the current legal provisions relating to Power of Attorney, guardianship and administration legislation, already exist across various jurisdictions.  Further, they provide an appropriate legal framework for decision making in that they not deny the inclusion of support to be provided to an individual in relation to decisions affecting the individual, as the individual case may determine.  The writers suggest that promoting the inclusion of supported decision making in law, as a formal process, constitutes an attempt to engineer the legal framework by challenging the legitimacy of substitute decision making.

  1. By way of example as to the significance of the need to change the law, if indeed the push by the ALRC is accepted by government, of the 54 recommendations listed as sub-sets of the nine principal recommendations – 41 recommend changes to particular commonwealth or state legislation or the development of new regulations or guidelines.

  1. Further, in total, the recommendations, if adopted, would require amendments to 13 commonwealth or state acts along with an unspecified number described in some of the recommendations as ‘relevant legislation’.

  1. The significance of the above is not just in the number and cross-jurisdictional implications, but also of equal significance is the spread of the legislative or guideline changes that would be required.  As noted above, the evidence of this is in the number of acts that would require amendments to be made and including those ranging from the Aged Care Act 1997, the Social Security Act 1999, The Personally Controlled Electronic Health Records Act 2012, The Evidence Act 1995, the Crimes Act 1914, the Commonwealth Electoral Act 1918, The Marriage Act 1961, The Corporations Act 2001, the Federal Court Act of Australia 1976 and of course the NDIS Act 2013.

  1. Further, the recommendations also require entities such as the Australian Information Commissioner developing guidelines and the Australian Bankers’ Association encouraging banks “to recognise supported decision making’.

  1. While the writers do not deny the possibility of legislative amendments being made or guidelines or codes being established, they nonetheless note that this would require the will of the relevant governments.  They argue that this is something that is unlikely to be achieved and, if so, certainly not in a short time frame.

  1. Apart from the above however, and again noting the writers’ contention that supported decision making must not ignore capacity and therefore no matter what the level and types of support provided not all persons with disabilities have the capacity to contribute or participate in decisions affecting them, they argue that supported-decision making can be acknowledged in a single law.

  1. The writers contend that an example of applying the language of ideology is where the ALRC sought to establish a new lexicon by framing its deliberations on their use of the word ‘ability’.  The ALRC appears to have done this by arguing that functional capacity is often confused with the concept of ‘legal capacity’.  By extension the argument then goes that legal capacity is regularly confused with ‘mental capacity’.  As such, the ALRC argues that to avoid this confusion, the use of the word ability should not be tied to legal capacity, but instead it is more appropriate to link ability as a function tied to the notion of support, particularly when considered in the context of people with disabilities.  Hence the notion of supported decision making.

  1. The writers challenge the above.  They accept the traditional meaning of legal capacity, whereby it reflects a meaning that all people are, or should be, equal in the eyes of the law.  However they also acknowledge, that for legitimate practical reasons not all people are capable, within the context of the law, in the sense of an individual necessarily having the capacity to contribute to decisions affecting him or her, even with the highest and most sophisticated types of support.

The example of unfit to plead

  1. The classic example of the above is where currently an individual may be deemed unfit to plead.  Given the ALRC’s position in promoting supported decision making, this suggests that the concept of fitness to plead would no longer apply.

The example of jury service

  1. Interestingly, if viewed from the other side of the coin, this should also then be taken to assume that an individual has the right and potential to be sworn in as a juror.  In the event of such circumstances, the writers therefore challenge the independence of an individual who may undertake jury service, where in so doing, such participation requires a support person or representative to facilitate his or her participation.  Clearly, not only does such a scenario contradict the whole notion of the independence of the individual juror, but also brings into doubt the confidentiality processes imposed on a jury.  In relation to matters associated with jury service, the ALRC in recommendations 7-12 to 7-15 recommends the inclusion of a ‘communication assistant’ to be permitted into the jury room to assist a juror who requires support and for the purpose of assisting that individual juror to be able to participate in the deliberations of the jury. 

  1. The writers challenge this position and argue that notwithstanding the privacy protective mechanism built into these particular recommendations, taken to their logical conclusion these recommendations pave the way for all people with disabilities, regardless of capacity, to be able to participate in jury service.  While it seems reasonable to conclude that the ALRC may argue this to be positive, the writers challenge the recommendation on the basis of capacity.  This being because no matter what level of support provided by a ‘communication assistant’, a person requiring and being provided with assistance, does not necessarily have the capacity to be able to assimilate the assistance provided and therefore, make an informed decision. 

  1. Given the above, the writers therefore contend that this brings into play the significant dichotomy between the level of the assistance required to be given to the person requiring assistance and the translation of the response provided by the ‘communication assistant’, versus what in effect could only be an interpretation given to the jury’s deliberations and as provided to the person being assisted.  Equally, the response of the person being assisted could also only be an interpretation by the ‘communication assistant’.  Essentially, this means that in particular circumstances the ‘communication assistant’ in effect becomes a juror.

  1. Therefore, in essence, what the ALRC position means is that legal capacity goes beyond the traditional concept.  Thus, the critical question challenging the ALRC position must be - Why is it that some groups or individuals are treated differently in the eyes of the law?  The writers argue that it is reasonable to contend that this is because those who framed the law realistically recognised that there are some people who, for a range of reasons, are unable to exercise legal capacity.  Therefore, as currently applying, legal capacity accepts that an individual’s cognitive or mental capacity, where cognitive or mental capacity equates to whether or not the individual is capable of making and communicating an informed decision, must be taken into account.

The case of judges

  1. The Australian Constitution recognises the significance of capacity by providing for the removal of a judge on the grounds of proven incapacity.  Apart from the fact that it is nothing less than the Australian Constitution that recognises the practical application of incapacity, any suggestion that this provision might be changed to allow for a judge to be supported in his or her decision making would clearly bring into question the independence of the judiciary and the exercising of an individual judge’s responsibility.  If the current independent arrangements were to be changed, notwithstanding it would require a change to the Constitution, it would be obviously nonsensical by undermining the whole concept of responsibilities and independence.

Other statutory appointments and other roles

  1. Associated with the above is that of the ALRC’s recommendation 11.4.  This recommendation is one that seeks to replace provisions in Commonwealth legislation that require the termination of statutory appointments by reason of a person’s ‘unsound mind’ or ‘mental incapacity’.  The writers totally reject this recommendation.

  1. Statutory appointments must be considered as having significant authority and responsibilities often in relation to others in the community.  As such, the writers contend that this recommendation is arrant nonsense and is highlighted a case of ideology gone mad. 

  1. The ALRC in their recommendation 11.3 recommends the removal of “reference to ‘mental incapacity’, ‘being incapable, because of mental infirmity’ and ‘mental or physical incapacity’” and hence the exclusion of an individual being eligible to act in the role of “director, auditor or liquidator, or a financial services license holder”. 

  1. Associated with this recommendation is that no such limitations should apply if individuals holding such roles are capable, with support, of understanding information relevant to decisions, have the ability to retain the information, are able to use such information and can communicate their decision in some way.

  1. The writers challenge the above on the grounds that the recommendation, while focusing on the concept of only being ineligible for such roles if the individual cannot be supported to understand, retain, use, and communicate on matters associated with the roles, fails to make any acknowledgement of who would make such decisions and what assessment would be undertaken to make such a capacity determination. 

  1. Equally however, and probably of even greater import, is the same argument that applies in relation to jurors and judges.  Effectively that being - Where can the line be drawn between support, interpretation and the concept of legal independence?

A matter of ‘iso-ideology’ and ignoring reality

  1. The focus on promoting the concept of ability in the context of the legal environment in effect ignores the concept of inability.  The writers argue that to deny the reality that there are some people whose ability or capacity does not equip them with the necessary mental or cognitive functions to make an informed decision, no matter what level of support is provided, represents a clear case of ‘iso-ideology’ thinking, where the thinking is driven by an ideology that is totally isolated from reality.  Indeed, in considering the link between rights and responsibilities the writers highlight the law’s current recognition of an individual having the right to make a decision to appoint a Power of Attorney based on the individual’s recognition that there may come a time when the individual is not capable of making an informed decision and has therefore nominated someone else to act on his or her behalf. 

  1. The ALRC detailed a continuum of supported decision making by introducing into the lexicon the concept of ‘fully supported’ decision making.  What this really means is that, at one end of the continuum the practical effect is one whereby it is another person who actually makes the decision for the supported person.  Given that current laws provide for substitute decision making in the form of guardianship, financial administration and Power of Attorney, the writers argue that the push to introduce a new term when there already exists appropriate terminology and processes that allow for fully supported decision making, is an indicator that all stops are out to get rid of substitute decision making. 
  2. It is clear that the push to expunge the terms ‘guardian’, ‘financial administrator’ and ‘Power of Attorney’ from the law is rationalised by seeking to replace them with the term ‘representative decision maker’ or ‘supporter’.  By default this would mean that ‘supporters’ and ‘representatives’ would in effect become the substitute decision-makers.  The writers argue that this is a form of legal–social engineering in the sense that this could lead to an engineering of the law that could provide legal legitimacy to individuals who themselves self-select as being a supporter or representative of the person who requires support.  Alternatively, if the alternative view were pursued, the law would provide for an unrealistic option of requiring those without the capacity to select or nominate a supporter or representative. 

  1. Essentially, this reflects a circular argument whereby on the one hand it is argued that there are some people with disabilities who requires a supporter or representative because of their limited capacity, and further that no matter what the capacity deficits, all people with limited capacity are capable of contributing to and participating in decisions affecting them.  Yet, despite this, the suggestion that the individual should be party to nominating his or her supporter or representative contradicts the need for support in the first place.

The illusion of separating ideology from supporter input

  1. While some have been quick to point out alleged tensions that may arise between families providing support to family members with a disability, they neglect to make any such reference to the potential of so-called independent individuals, including funded advocates, to operate entirely without tension and self-interest. 

  1. The writers argue that it stands to reason that in the event of a support person or representative holding a particular ideological view, this view has high potential to be expressed in the provision of their support to the individual with a disability.  As such, the writers submit it is naïve to assume that, because a person is not a family member, that person will maintain complete independence and be without bias.

  1. The significance of the above lies in the proposal to replace “best interests” as the test for decisions with what is being called the “will and preferences” test (noting that ‘will and preferences’ is the language of Article 12).  This new test is alleged to take account of the ‘will’ and ‘preference’ of the supported person, this being regardless of his or cognitive capacity and lack of ability to realistically express his or her will or preference.  The reasonableness test would suggest that it is reasonable to assume in almost every case that it is the family who is best positioned to know, or be able to interpret, the ‘will and preference’ of their family member with a disability.

  1. By contrast, the current law provides an unequivocal legal base for either an administrator or guardian to be appointed, or, in the case of Power of Attorney, for the individual him or herself to nominate a representative prior to incapacity becoming an issue.  While the ALRC suggests that the person who requires support would nominate their support, as already noted above, this totally ignores those circumstances when the individual does not have the capacity to do so in the first place.  As such, it therefore seems reasonable to suggest that this arrangement is open to manipulation because an individual who becomes the person's supporter or representative has the potential to influence an outcome. 

  1. Again, while it is argued by some that an individual could make their nomination as to the person they want to be their supporter or representative in anticipation of losing the ability to make such a decision, clearly this begs the question as to how this differs from the existing Power of Attorney provision?  Given this - Why then make the change?

The research focus – the critical questions

  1. In addressing the full range of options in decision making, researchers and decision makers must be alert to possible unintended consequences if they ignore key facts as canvassed above and only focus on supported decision making as applying to all people with disabilities.  Significantly, the prospect of denying an individual his or her right of choice to have a substitute decision maker as a future option is one such possible consequence. 

  1. Additionally, enshrining supported decision in legislation potentially gives rise to the advocacy industry becoming the supporters and representatives of choice, by some legislative construct as to who may be deemed to be a supporter or a representative.  This being in contrast to the individual requiring such support deciding, or families being the first point of consideration.

  1. Therefore, in addressing the various types of decision making, researchers must acknowledge the above and are therefore challenged to include the following considerations as part of their research profile.

  1. Include the full range of disability types
  2. Include the full range of capacity levels
  3. Identify, and have a broad-based socio-economic and geographic sample 
  4. Include the methodology used to determine capacity levels
  5. Include demonstrable evidence as to the type and techniques of the supporter input to elicit the subject’s input response to the decision making
  6. Identify the technology used to elicit the subject’s input response to the decision making
  7. Identify how the supports provided are free from bias in their application and the assessment of the results

  1. The writers contend that not to include the above must deem the research irrelevant and it will only serve to create a manufactured fault line in the debate on decision making.

  1. By reference to two recently reported research or project initiatives the writers highlight the deficits that occur by not taking full account of the above.

  1. The first relates to research entitled Supporting People with Cognitive Disabilities in Decision Making – Processes and Dilemmas and as conducted by the Living with Disability Research Centre at La Trobe University, undertaken as part of a Scope project entitled Supported Decision Making and Guardianship: Building Capacity within Victoria,

  1. As noted in the final report of the La Trobe University Research Centre (June 2015), the “study aimed to explore the perceived processes and dilemmas experienced by people who provide support for decision making to people with cognitive disabilities, or are in receipt of support for decision making”.  The distinction made between ‘support for decision making’ and ‘supported decision making’ was one whereby the methodology stated, “The study adopted a social constructionist theoretical perspective and an exploratory qualitative design using interviews and focus groups, thematic analysis and grounded theory methods”.  The writers note these as high-sounding words that may well have some degree of credence in the rarefied atmosphere of ‘exploratory qualitative design’, but they suspect they are simply a cover for avoiding the hard-core processes necessary to address the type of research that seeks to establish both categorical qualitative and quantitative outcomes.  The writers argue that an activity or project undertaken under the guise of research, and then used to promote the need for more research, must be seen as sham and a blatant marketing exercise to acquire more research dollars.

  1. The research methodology noted that the sample selection was based on the individual “having a mild to moderate cognitive disability” and “good enough verbal communication skills to participate in an interview.”  The writers note that no mention was made of any formal assessment being undertaken and instead reliance was placed on the fact the supported “participants had been deemed eligible for the disability support services they received.”

  1. It is also of concern the research methodology descriptor provided no advice as to what assessment methodology or techniques, if any, other than “participants had been deemed eligible for the disability support services”, had been used to ascertain that the participants were deemed as “having a mild to moderate cognitive disability”.
  2. While the writers acknowledge the focus of the research was on what might be called ‘supporters’, nonetheless, they argue that when linked to the target group being supported as in “people with cognitive disabilities” and the methodology of “using interviews”, in part highlights the very weaknesses of some research by ignoring those elements as detailed in 70 above.  

  1. Significantly, the La Trobe research failed:
  • To include the full range of disability types
  • It failed to include the full range of capacity levels
  • It only addressed an age range of 13 years or so – 23-36 years of age
  • It failed to provide any socio-geographic information either in relation to the people with disabilities or the others, and particularly families, involved in the project.
  • And most significant of all, the sample group of people with disabilities only numbered eight.

  1. In light of the above significant entry deficits, the findings of the research must therefore be seriously questioned.

  1. One such finding being that, the literature review undertaken as part of the study “highlighted the absence of a strong evidence base about the best practice in support for decision making”.  While this may well be the case, there is no evidence to suggest the La Trobe study made any inroads into any such deficits, given the size and narrowness of its sample.

  1. A further finding, “highlighting the need for ongoing research” and that, “both the literature and fieldwork” provided “some insights into the processes used by supporters, as well as the dilemmas they face in providing people with cognitive disability with support for decision making” can hardly be taken seriously.  This being particularly so when considered in light of the fact that the sample group of people with disabilities only comprised eight, and these people were defined as having a ‘mild or moderate cognitive disability’. 

  1. Associated with the above, the writers also contend that apart from the above finding, the reliance given by ideologically driven researchers to section 12 of the UNCRPD without any questioning of it, and the emphasis given to the ALRC’s position in relation to ability versus capacity, suggests such research is created to fit the entry proposition.  Or, in other words, the research is not based on a hypothesis which it seeks to test, but instead is based on acceptance of the supported decision making ideology based on the ability argument.

  1. While the writers acknowledge the reference in the La Trobe project to the decision-making principles articulated by the ALRC, and as referenced below, and they accept that as principles they are laudable, nonetheless, they argue they add nothing to the real live practical considerations that must be addressed in the debate of substitute decision making versus a continuum of supported decision making. 

Principle 1: The equal right to make decisions

All adults have an equal right to make decisions that affect their lives and to have those decisions respected.

Principle 2: Support

Persons who require support in decision making must be provided with access to the support necessary for them to make, communicate and participate in decisions that affect their lives.

Principle 3: Will, preferences and rights

The will, preferences and rights of persons who may require decision making support must direct decisions that affect their lives.

Principle 4: Safeguards

Laws and legal frameworks must contain appropriate and effective safeguards in relation to interventions for persons who may require decision making support, including to prevent abuse and undue influence.

  1. The study makes a comment that, “Supporting people with cognitive disability to make decisions requires knowledge about and skills in communication with people with varying levels of cognitive disability, self-awareness and reflection, conflict resolution, and the range of potential strategies identified in this study for tailoring support for decision making to individuals”.  While in the writers’ view this is stating the obvious, it nonetheless, totally ignores the end of the cognitive disability scale where incapacity kicks in, and no matter what the range of strategies used and no matter what amount of tailoring is undertaken, it cannot be ignored.

  1. The second project relates to a project undertaken by Victoria’s Office of the Public Advocate (OPA).

  1. In a public presentation at a forum sponsored by The University of Melbourne’s Law School (15/7/2015), a representative of Victoria’s OPA provided an outline of a project undertaken by OPA in relation to supported decision making.

  1. Although a verbal presentation only, the OPA representative described the project as having a sample group of 18 people with intellectual disabilities.  While it was noted that all the participants in the sample had some level of verbal communication skills, a particular focus was given to one member of the sample, a young man of 17 or 18 years of age.

  1. The application of the project as applicable to this young man was that he articulated his aspirations to be able to get his driver’s license and also get paid employment working with animals.  While the writers acknowledge this as being very laudable and accept that the project played a significant part in assisting the young man to work toward those goals, nonetheless, again, they challenge this project on the basis of its narrow and exclusionary structure.

  1. While the writers acknowledge that the La Trobe and the OPA projects represent but only two recent activities associated with supported decision making, nonetheless, they argue that they do reflect what can be assumed to be a concerning trend in relation to the current approach research.  This concern being very much about the focus on sample populations of people with disabilities who can verbally communicate, and, as noted in the La Trobe report, are capable of participating in an interview.

  1. The writers contend that the real challenge for researchers is to step beyond the safe ground of including in their samples only those who can ‘talk’ and move into the unchartered waters of including the full range of disability types and cognitive and mental abilities ranging from capacity to incapacity.

  1. However, notwithstanding the above, the writers contend that no amount of research can deny the reality that there are some people, who, by virtue of their incapacity, will not be able to express their needs, ambitions and aspirations and, as such, will not be able to participate in or contribute to, decisions impacting on them. 

The spawning of a new industry

  1. In some ways the research side of the debate concerning supported decision making and its brother/sister-in-arms, decision making with support, could well be argued to be aimed more at spawning a new industry to satisfy the researchers call for more research and hence more money.  Already however, the common call by researchers and the ideologists tend to be dismissive of any opposing view on the basis that “the research says”.  The call for more research, more money and the ‘research says’ converge to oppose any alternative view, even where such a view highlights the realities of incapacity and its import for decision making.

  1. The La Trobe project distinguished between “support for decision making” and “supported decision making.”  The report stated “In the current Australian legal context support for decision making occurs largely in the informal sphere but also in the work of formal substitute decision makers”.

  1. The report further stated that “In contrast debates about supported decision making more closely engage with issues of legal capacity in the context of reforming legal frameworks to more formally recognise or appoint, for example, decision making supporters, co decision makers or representatives with specific mandates about their scope and the way they must act to support decision making.”  And further that. “At the time the study was conducted, there was no formal legal framework for supported decision making in Victoria”.

  1. The writers challenge the statements as detailed in 93 and 94 above. While they agree that “support for decision making” is not necessarily enshrined to a level that the researchers might argue is needed in law, they nonetheless argue the La Trobe project appears to have ignored the fact that, at least in Victoria, a legislative framework of natural and informal supports already exists.  Examples of this are defined in S.  5 (1) (i) (j), S. 54 (3) (a) and S. 110 to of the Disability Act 2006.  This of course challenges the statement that “At the time the study was conducted, there was no formal legal framework for supported decision making in Victoria”.

  1. The writers also argue the La Trobe paper in effect downplays the significance of informal and natural supports that apply to each and every one of us in many aspects of our daily lives.  The writers argue that in particular family and natural circles of supports should not be underestimated.

  1. In terms of “reforming legal frameworks to more formally recognise or appoint, for example, decision making supporters, co decision makers or representatives with specific mandates about their scope and the way they must act to support decision making”, the writers argue that this is an unrealistic suggestion.  This argument is based on the reasonably assumed practical considerations that apart from seeking to suggest a hierarchy of individuals necessary to provide the nominated levels of support, implementation of the suggestion would require a process to determine, for example, nomination, selection or appointment, along with a clearly defined monitoring and cancellation or deregistration process.

  1. In addition to the above, an associated and parallel process of assessment of the suitability of the supporter or representative must be assumed.  Also further, an assessment of the needs of the person to be supported along with a matching process.

  1. Some might argue that the La Trobe suggestion represents a similar process to that which currently applies to substitute decision making and thus the appointment of supporters should be seen as simply being an extension of what currently exits. 

  1. The writers argue that the current process associated with substituted decision making is already under pressure.  They argue that despite the concept of least restrictive alternative as practiced in Victoria and hence the limitations imposed on the appointment of guardians and administrators, there is still the need to use the Office of the Public Advocate to assume guardianship for some people who have been deemed by the Victorian Civil and Administrative Tribunal (VCAT) as requiring guardianship.

  1. Additional to this is the fact that many people with disability also require the State Trustees to manage their funds. 

  1. The above provides a strong indication that while there may be a need to refine the current processes because of what might be considered to be a limited target group to undertake guardianship and financial administration, an expanded system would likely be under even greater strain where ‘supporters’ would need to be formally appointed in some way. 

  1. It must also be kept in mind that given the ideology of the ‘least restrictive alternative’ as practiced by VCAT and the tendency to also avoid appointing family members as guardians, these current practices must be considered to send a concerning message, in the context of the process that might apply in the event of reforming legal frameworks to more formally recognise or appoint, for example, decision making supporters, co decision makers or representatives with specific mandates about their scope and the way they must act to support decision making”,

  1. On top of the above is also of course the matter of – Who pays?  Again noting that already those people with a disability, who have their funds managed by the State Trustees, are the ones who pay.

  1. As such, the writers argue that even if implemented as a parallel process, the assessment and approval of “decision making supporters, co decision makers or representatives” associated with supported decision making processes, it is reasonable to suggest that the administrative structures and processes would be prohibitive.  Even if not, the writers argue an onus must be placed on the researchers and ideologues to detail – The how these matters will be addressed?

  1. By researchers and ideologues apparently ignoring the practical considerations, the writers submit that the emphasis placed on legalising supported decision making is an unmitigated attempt to spawn a new industry.  By doing so they argue that rather than facilitate the practice of rights, instead the over-prescriptive approach will inhibit what might be described as the everyday matter of decision making and what must be seen as a necessary and important part of natural supports.

  1. The La Trobe report states that, “Supporting people with cognitive disability to make decisions frequently involves tensions and dilemmas including managing power differentials, the risk of undue influence, and negotiating the inherent tensions between enabling rights and managing risk.  Those in a supporting role require opportunities to explore, in a safe environment, these dilemmas and the ways in which they can address these. Collaboration between the different supporters involved in the life of a person with cognitive disability, and strategies to identify others who might potentially become involved in supporting decision making, is essential. Practitioners require understanding of the differing roles, contexts and challenges confronting different types of supporters.”  The writers argue that this statement while highlighting some of the realties as highlighted by them further above, provides no suggestions of how these challenges should be dealt with, if indeed that possibility exits.  As such, the writers contend that if research only offers solutions in terms of there being “opportunities to safely explore dilemmas” “collaboration” “strategies” and understanding “practitioners”, without including the broadest sample, then no amount of exploration or collaboration will produce an evidence based outcome.

  1. The La Trobe statement that, “Supporting people with cognitive disability with decision making is a complex and at times challenging process.  All supporters, whether they are family members, support workers or lawyers need ongoing opportunities for training and supportive environments to reflect on the tensions they confront, further enhance understanding and hone their strategies of decision making support.” in the writers’ view brings into play two major concerns.

  1. The first concern relates to the suggestion of the need for “ongoing opportunities for training.”  The inference conveyed by this statement is twofold.   Firstly, that in order for any level of support to be provided the supporter should be trained.  The second element is that regardless of any initial training that may be provided, there is then a need for “ongoing opportunities for training.”

  1. The second inference is that the training both as an initial action and its ongoing nature must be applied to all parties who provide any level of support to the individual.

  1. Despite the significant implications of the statement however, no comment is provided in relation to the type and length of training required, who might be qualified to deliver it, how it would be paid for and the practicalities associated with attending such training.

  1. The writers contend that the higher the level of the support required, the higher the degree of the needs of the person requiring the support and where there may also be an overlay of multiple types of support, including aids and equipment, then the more detailed the training would need to be.

  1. The writers point to a running battle that some families are having with OPA in relation to S. 30 (h) of the Disability Act 2006.  This relates to circumstances associated with a resident of a disability residential service, by virtue of his or her cognitive incapacity being unable to make a “complaint to a community visitor”.  The OPA has argued that Community Visitors, by virtue of their training are able to facilitate the resident expressing him or herself and for the Community Visitors to also be able to meaningful interpret the resident’s needs or expressions in some way.   

  1. The reality is of course, that as volunteers, Community Visitors are exposed to minimal training consisting of at most a handful of hours, and certainly not the high level training necessary to equip them to be confident to establish an understanding of the individuals concerned, and where contact is made with the individual on only one or two occasions annually.  This contrasts significantly with exposure that families will have developed over years of refining their knowledge of their son’s or daughter’s capacity.  Or also, the skills and knowledge communication specialists will have acquired through a lengthy academic education.

The Support Continuum

  1. The writers challenge the dichotomy promoted by the La Trobe project where a distinction is made between ‘supported decision making’ and ‘support for decision making’.  They argue that input into decisions affecting a person with a disability and the degree to which the individual with the disability can contribute to and participate in decisions affecting him or her must instead be seen as occurring along a continuum.   Further, that the continuum recognises where legal capacity is replaced by incapacity and hence the legal framework becomes formally involved.

  1. The significant factors to note in relation to the following diagram are that:
  • People with disabilities are subject to the same protections as all other members of society e.g. consumer law and other protective laws
  • Informal and natural supports mean just that – informal is not restricted to or subject to any formal guidelines or regulatory or statutory rules and natural supports relate to those closest to the person with a disability including family and friends.
  • The formal legal supports as per guardianship, financial administration and Power of Attorney apply as currently written into the legal framework.
  • The concept of supported decision making, while acknowledged in the law as through principles and guidelines, is not mandated as a formal process, but instead guided by a set of principles.

  1. The following schematic diagram illustrates the above.

Indicative Percentage of Support

100%

90%

80%

70%

60%

50%

40%

30%

20%

10%

0%

Level of Support

Nil

Minimal & Intermittent

Medium

High

Fully Supported

Guidelines

Statutory Directives

Legal

Imperatives

Informal

Support

Informal Support

Financial Administration

Formal Supports e.g. Planning

Nominated Guardianship

Financial Administration

Power of Attorney

Plenary Guardianship

Financial Administration

As per legislative protections applicable to the rest of the population e.g. consumer, criminal law

  1. In relation to the above, the writers therefore suggest that recognition can be given in the law to supported decision making for those where it has relevance.  At the same time this could be done by also acknowledging, in law, the necessity of substitute decision making, as in guardianship, financial administration and Power of Attorney.

Creating a Commonwealth Law - The Substitute and Supported Decision making Act

  1. The writers submit the above could be achieved by the creation of a Commonwealth law entitled - The Substitute and Supported Decision Making Act.

Concluding Comment

  1. This paper has mounted a challenge to the ideology that promotes the notion that all people with disabilities, no matter what their capacity limitations and in particular their cognitive or mental incapacity, are capable of contributing to and participating in decisions relating to them, just so long as the right level and types of support are appropriate.

  1. While the writers fully support the principal that all adults have an equal right to make decisions that affect their lives and to have those decisions respected, nonetheless, they argue that where the individual lacks the capacity to make or participate in decision making affecting him or her, the current definition of legal capacity must continue to apply.

  1. Equally, while the writers support the principal that persons who require support in decision making should be provided with access to the supports necessary for them to make, communicate and participate in decisions that affect their lives, they argue that in those cases where the individual lacks the cognitive or mental capacity, substitute decision making must be applied.

  1. Further, the writers also acknowledge that in those circumstances where a person, who with support has the capacity of directing or participating in decisions, associated with his or her will, preferences and rights must be provided with the support to do so.  However, they argue that in terms of those individuals who are unable to express or contribute to decisions about their will, preferences and rights, it is appropriate that there is a substitute decision maker.

  1. Also, while the writers support the principal that the laws and legal frameworks must contain appropriate and effective safeguards in relation to interventions for persons who may require decision making support, including to prevent abuse and undue influence, they contend that such legal imperatives must not lock supported decision making into a prescriptive process.  Instead, they submit that it should only articulate a set of principles.  As such, they promote the notion of one piece of legislation entitled - The Substitute and Supported Decision Making Act.

  1. On the matter of research and ideology, the writers argue in the strongest voice possible, that for those who push the notion of supported decision making as being a practical reality for all people with disabilities just so long as the level and types of supports are appropriate, then their research platforms must include the full range of disability types and capacity levels.  Further, that it must identify and have a broad-based socio-economic and geographic sample.  Also, it must include the methodology used to determine capacity levels along with demonstrable evidence as to the type and techniques of the supporter’s input to elicit the person with the disability’s input response to the decision making.  And, it must identify the technology used to elicit the person with the disability’s input response to the decision making as well as demonstrating how the supports provided were free from bias in their application and in the assessment of the results.

  1. On the matter of legal capacity, the writers highlight Germany’s position that “All persons have, as affirmed by Article 12 paragraph 1 of the UN Convention, legal capacity in the sense of legal standing.  But not all persons can exercise those rights and duties.”

  1. The writers contend that the UN Convention and the ALRC are not infallible.  As such they argue that the concept of legal capacity as currently applying, whereby an individual’s mental capacity equates to whether or not the individual is capable of making or participating in an informed decision, must be maintained.  Therefore, the debate on supported decision making and substitute decision making must fully acknowledge the realties of cognitive and mental incapacity. 

  1. Unless the researchers, ideologues and law makers fully accept the relevance of legal capacity, a fault line of confusion and pretence will occur and little, if anything, will be achieved by way of maximising the rights of people with significant cognitive and mental capacity impairments to be represented as appropriate.

*****************************

JacksonRyan Partners

A Business Unit of

Max Jackson & Associates

ABN 50 086 394 676

Head Office

1/98 Wells Street

Southbank VIC 3006

Telephone: (61-3) 9077 4152

Disclaimer:

While JacksonRyan Partners endeavour to provide reliable analysis and believes the material it presents is accurate, it will not be liable for any claim by any party acting on such information.

© JacksonRyan Partners 2015

LISA Inc   ~   Phone: 03 9434 3810   ~   Email: vk3qq@optusnet.com.au   ~   Address: 73 Nepean Street Watsonia VIC 3087

Copyright © 2013 LISA Inc. All Rights Reserved. SiteMap.