1. Home
2. Policy Portfolios
3. Justice Systems

Are the rights of people whose capacity is in question being adequately promoted and protected?

A submission by the Disability Council of NSW to the Attorney General's Department of NSW - June 2006

The Disability Council of NSW

The Disability Council of NSW (hereafter: "Council") was established by the Community Welfare Act 1987 to advise Government in NSW on issues affecting people with disability and their families. Council also provides advice to the Commonwealth Government on the effect of policy on people with disability living in NSW.

Council members are appointed by the NSW Governor. They are selected on the basis of their experience of disability and their understanding of issues, their knowledge of service delivery and their ability to reflect and advise on government policy. The majority of Council members are people with disability.

Council's advice is premised on a social model of disability, such that the source of disability is not impairment, but socially and economically constructed discrimination and exclusion. While not disregarding the experience of pain and illness in the lives of some people with disability, our primary goal is contribution to the realisation of a socially just community in which Government policy and practice reflect the lives and experiences of people with disability - acknowledging their rights as citizens, respecting their choices, and valuing their contributions.

People with disability and the civil justice system

A recent report of legal needs in disadvantaged areas by the Law and Justice Foundation of NSW found that, of the various socio-demographic groups examined, people with chronic illness or disability were not only the most vulnerable to civil, criminal and family legal problems, but were also found to face the greatest difficulty in resolving such problems .

The association between disability, contact with the justice system and difficulty in achieving justice is well-documented. The relationship has been explored in detail in the NSW Council for Intellectual Disability's Framework Report and the Disability Council of NSW's report A Question of Justice.

Over the last ten years, the Human Rights and The Human Rights and Equal Opportunity Commission's complaints statistics typically show that the largest percentage of complaints received are lodged under the Disability Discrimination Act 1992, and that complaints relating to the DDA are disproportionately less likely to be finalised within twelve months.

Some writers have suggested that the relationship between disability and difficulty in achieving justice may indeed be self-perpetuating: Disability or ill health may not only increase vulnerability in the legal system, but increased and unsatisfactory contact with the legal system may exacerbate certain disorders (particularly mental illness & psychiatric disability).

Some years ago, Queensland lawyer and bio-ethicist the late Jennifer Fitzgerald observed:

"….the legal system has regarded disability as largely invisible.... lack of exposure to issues around disability means that many of the social myths about people with disability and value judgments about their worth and their appropriate place in society, which are part of the general community, are imported, without contestation, into the legal system.

When this basic ignorance is combined with the reductionist nature of legal thinking which individualizes, rather than socializes and contextualizes, legal dilemmas, the position of the person with disability within the legal system is one of extreme vulnerability and the legal system can actually be used, in a similar way to medicine, to legitimize abuses against people with disability."

The Disability Council welcomes any change in civil or other law which affirms the equal rights of citizenship of people with disability.

The current discussion paper & the terms of Disability Council's response

The Disability Council acknowledges that legal mechanisms exist in NSW to accommodate the needs of people who require substitute decision makers after a determination has been made as to their capacity to make decisions viz. the Guardianship Act 1987, the Protected Estates Act 1983, and Powers of Attorney Act 2003.

The discussion paper is concerned with protecting the rights of people whose capacity is in question, as a consequence of the fact there is no comprehensive approach to assessing, or addressing, the person's support needs in these circumstances. The paper refers to two specific recommendations that emerged from the 2004 Attorney General's Department capacity roundtable:

• the creation of a consistent approach to assessment of legal capacity; and
• the creation of resources for capacity assessors.

Council will consider these issues in terms of contemporary policy and relevant legislation, in particular the UK Mental Capacity Act 2005.

We note that the current paper only deals with the question of legal capacity in relation to civil law and, thus, it does not consider the Mental Health (Criminal Procedures) Act 1990: we have restricted our responses accordingly. Nonetheless, in the discussion of an appropriate approach to assessment of capacity, the Disability Council cautions that any subsequent changes to legislation related to the legal capacity of people to make decisions at civil law should not lead to inconsistencies in the process of determining capacity under any other existing laws, particularly with regard to criminal law.

Capacity definitions in recent legislation and government policy

NSW currently has no single definition for capacity; instead, its definition relies on a range of common law and statute definitions. The nature of capacity is described in several recent Government policy documents or guidelines: its definition (as, broadly, the ability to understand and take in information, consider the consequences of choice and reach some sort of decision) tends to be implicit in such descriptions. For example, the Office of the NSW Privacy Commissioner's Best Practice Guidelines: Privacy and people with Decision Making Disabilities describes capacity thus:

A person's capacity may change over time. The ability to make decisions may be affected by factors that are pre-existing or acquired, temporary, episodic or chronic. For example, a person with a mental illness may not be able to make particular decisions during periods of their illness where they are acutely unwell, but may have capacity at other times. A person with dementia may have capacity in the early stages of dementia but lose capacity to make decisions about parts or all areas of their life later on.

It further states that capacity depends on the nature of the decision to be made….

A person may not have the capacity to make decisions about certain aspects of their lives but retain the capacity to make decisions about other matters. For example, a person may not be capable of making decisions about their financial affairs or major medical treatment, but still have capacity to make decisions about basic health care and their lifestyle generally, such as where they want to live and who they want to share this information with.

…and that a meaningful assessment of capacity depends on appropriate support being provided….

A person's capacity may depend on whether appropriate support is provided to enable them to exercise their capacity. For example, many people with an intellectual disability are capable of making decisions if information is communicated in a way that is appropriate to their abilities and usual methods of understanding. If a person has a low level of English language proficiency or is from a culturally diverse background, it is important to provide information in their first language or in a manner that is culturally appropriate so that they can exercise their capacity to the greatest possible extent .

…and, finally, that a "bad" decision is not indicative of incapacity:

A person might make a decision that an agency or their support person regards as uninformed or misguided, but still have capacity. To have capacity, a person does not need to make what other people might regard as a 'good' or 'right' decision, or a decision that may be in the person's best interests. A person only needs to understand the general nature and effect of a particular decision or action and be able to communicate their intentions or consent.

In a rather more concise formulation, DADHC's Draft Decision Making and Consent Policy states:

Capacity is subject to fluctuations as it is influenced by the internal and external environment of the individual. Ultimately, individuals must be able to understand the information relating to decisions they are required to make, and the effects of those decisions .

What is apparent in these policy formulations is that capacity is underpinned by functionality, rather than status (where capacity is supposed to be a static entity, based on diagnostic categories) or outcome (where decision-making is expected to be consistent with the standards and beliefs of a third party).

The Queensland Guardianship and Administration Act 2000 defines capacity under a decision-specific approach to assessment. Importantly, this Act provides for a presumption of capacity and acknowledges its fluctuating nature. Furthermore, it states that all adults share the same human rights, regardless of their capacity, and that the right to make decisions includes the right to make decisions with which others may not agree. It also goes some way to minimise conflict in law, by defining its relationship with the Powers of Attorney Act 1998.

With presumption of capacity as a "given" under Queensland civil law, and an explicit statement of rights in this regard, the Queensland Attorney General's Department has produced guidelines which may function as triggers for assessment of capacity. These are in relation to the Powers of Attorney Act 1998 - which, unlike the equivalent NSW legislation , provides a definition of capacity, viz

…the person is capable of:

(a) understanding the nature and effect of decisions about the matter; and

(b) freely and voluntarily making decisions about the matter; and

(c) communicating the decisions in some way .

Indications that there may be incapacity are that the person is :

• more forgetful of recent events;
• more likely to repeat himself;
• less able to grasp new ideas;
• more anxious about having to make decisions;
• more irritable or upset if unable to manage a task;
• easily influenced by others about decision-making;
• less concerned with activities of other people;
• less able to adapt to change;
• often losing things or getting lost;
• undergoing changes in behaviour; and/or
• experiencing changes in personality.

It appears that the standard of comparison for judging what is "more" or "less", with regard to the person's behaviour is what is known of the person himself, rather than a potentially non-representative "common man". Importantly, these guidelines note that people with intellectual or psychiatric disability may respond differently, and may require further questioning to determine their level of understanding.

The UK Mental Capacity Act 2005

The UK's Mental Capacity Act 2005 links incapacity to the presence of an impairment or a disturbance in the functioning of the mind leading to an inability to:

• understand the information relevant to making a decision;
• retain that information;
• use that information as part of the process of making the decision; or
• to communicate the decision by any appropriate means.

Note that in this legislation, capacity is decision-specific. A person does not have capacity or lack capacity "in general": She or he may have capacity to make some decisions but not others. There is a presumption of capacity to make a particular decision (as under the Queensland law) and, according to the principles of the Act, this continues until lack of capacity is demonstrated. Further, the principles state:

• the presumption of capacity includes the provision of all reasonable being taken to assist a person to make a decision; and
• an unwise decision does not prove lack of capacity.

At present, the type(s) of capacity assessment that might be applied under a Code of Practice associated with the Act have yet to be determined: the Department for Constitutional Affairs has released a community consultation paper to consider this issue, among others. It is due for completion this month. The Draft Code of Practice consultation paper acknowledges that a mix of formal and informal assessment modes may be desirable - particularly where the involvement of professionals in a formal capacity may actually hinder day-to-day decision-making.

With regard to the situation in Australia, under existing legislation, incapacity can be determined by a variety of professionals and types of assessment. A recent Australian publication examining mental capacity affirmed that there is no standard set of tests for assessment of capacity, and supported the importance of neuro-psychological examination as a source of expert information . A neuro-psychologist and panel member of the NSW Guardianship Tribunal expressed concern that assessments are frequently provided by other (medical) professionals, who may not be familiar with tests of cognitive ability - whereas neuro-psychologists specialise in cognitive testing and the assessment of functional deficiency, rather than merely providing a diagnosis . In the UK, the Draft Code of Practice spells out the kind of situation where a referral to an expert authority may be necessary. The type of factors considered to be indicative of the need for professional involvement include:

• the gravity of the decision or its consequences;
• where the person concerned disputes a finding of incapacity; and
• where there is disagreement between family members, carers and/or professionals as to the person's capacity.

It is clear that the UK government favours a functional assessment, where formal assessment of capacity is indicated. Finally, where lack of capacity has been demonstrated, any act or decision undertaken on the person's behalf must be in the person's best interest, and carried out in a way that causes the least restrictions on the person's rights and freedom of action.

The concept of "best interest" is fraught with difficulty, insofar as there is always a risk that alternative decision-makers may operate paternalistically. Without getting caught up in abstruse speculation about the relationship between "best interest" and the definition of "what is good", the Act provides some guidelines on how to proceed. These include:

• the need to encourage the person to participate in the decision-making as fully as possible;
• determination of the person's past and present wishes and feelings;
• consultation with friends, relatives, carers and any person appointed by a court, with regard to past and present wishes; and
• where the person has no carer (other than a paid carer), then an independent person may be appointed to advise an alternative decision-maker on the person's best interests - the Independent Mental Capacity Advocate. The Independent Mental Capacity Advocate is empowered to make the decision maker aware of all relevant information, and can challenge decisions.

Disability Council's recommendations:

Council believes that the approach taken to the determination of capacity under the UK Mental Capacity Act 2005, Queensland's Guardianship and Administration Act 2000, and emerging policy in relation to capacity in NSW is broadly consistent with the demands of people with disability for the right to autonomous decision-making. We therefore submit that:

• NSW Law would benefit from a single legal definition of capacity that could be used in relation to legal decision-making in all circumstances. Council maintains that a single definition does not need to be complex in order to remain flexible enough to cover existing and future situations.
• There must be a decision-specific presumption of capacity, which should include as the test "understanding and appreciation" (as in the Queensland Guardianship and Administration Act 2000).
• All relevant legislation should include the presumption of decision-specific capacity. Therefore, the Guardianship Act 1987, the Protected Estates Act 1983 and the Powers of Attorney Act 2003 should be amended to include a standard definition of capacity.
• Informal and formal, professional assessment should proceed from the same standard definition of capacity.
• We acknowledge the potential conflicts of interest that arise in the determination of "best interests" and recommend the creation of an independent advocacy role, in relation to capacity, such as described in the UK Mental Capacity Act 2005.

Andrew Buchanan,
Chairman, Disability Council of NSW