Whose choice? Whose control?

The new dawn of choice and control in the NDIS is let down by outdated legal frameworks about decision making by and on behalf of people with a cognitive impairment.

The NDIS is underpinned by the National Disability Insurance Scheme Act 2013, best understood as a broad framework rather than a detailed instruction manual. The NDIS Act puts the consumer (known in the Act as the participant) at its heart, who are themselves empowered to make decisions about NDIS-funded services and supports.

It is probable that more than 60% of NDIS participants are likely to have decision making impairments. With this inevitably comes situations where an individual participants’ ability to make a particular decision is at question. Indeed, this is not just about services and supports under the NDIS. With the increased social inclusion of people with disabilities comes more important decisions – where to live and who to live with, getting married, getting a job, managing money, getting the right health care, receiving income support, seeking redress through the justice system, voting, and so on.

The question of whether the law recognises that a person has the ability to make a decision about a matter is a complex one. It cuts across a range of matters where citizens exercise individual autonomy, and is dealt with unevenly across the federal and state and territory laws. It also very much depends on the individual – we are certainly past the days where all people with intellectual disabilities were presumed to lack legal capacity. A person may be able to make some decisions (for example, deciding where to live) but not others (for example, a decision to enter into a mortgage to buy the house). Of course others might not agree with the decision or doubt whether a decision is in a person’s best interests, but this is quite a separate question to whether the law recognises that the person is able to make that decision, and live with its consequences.

In the context of the NDIS, the NDIS Act allows the NDIA to recognise a participant as having an agent who can make decisions about services and supports on a participant’s behalf. In practice it seems this has been rare. Instead, the approach of the NDIA has been to recognise supported decision making. This is a concept that says that wherever possible, people with disabilities should be presumed to have the ability to make decisions for themselves. It recognises the role that family, carers and other people important to the person have in assisting them to make decisions for themselves. Fundamentally, supporters are not making the decision for or on behalf of the person – it is the person’s own decision.

To understand how this works in practice, we can look at the Victorian Office of the Public Advocate’s decision-making guide for adults with cognitive impairments or mental ill health. This provides guidance on where a NDIS participant lacks capacity to make a significant decision (such as to move accommodation) and where there is no appointed guardian, but where there are informal supporters around the person such as family members or close friends. This guidance states that where there is there general clarity (and agreement, where more than one supporter exists) about the decision that should be made, then this decision should be respected unless the the NDIA has concerns that the decision (or lack of one) constitutes a significant risk to the personal and social wellbeing of the person.

State and territory laws on guardianship and administration step into the breach when there is conflict or disagreement amongst informal supports or where there simply aren’t any informal supports. We have seen an increase in guardianship appointments in the Hunter trial site in particular, although interestingly not in other trial sites. In one such case from NSW, the guardianship tribunal commented on the irony of the NDIS – a federal government scheme – being the catalyst for engaging state guardianship laws.

While guardianship and administration laws are an important last resort and safeguard, they also reflect a binary – a person either has legal capacity or they do not. Guardians and administrators are usually required to consider the best interests of the person, giving lesser weight to the person’s own expressed wishes and preferences. This binary is at odds with the idea of supported decision-making.

There is little formal recognition at law of supported decision-making, even in the NDIS Act itself. This means that where people follow supported decision-making principles they are doing so in a legal grey area where there is little or no protection for anyone involved who recognises the role that supporters are playing in practice.

The Australian Law Reform Commission (ALRC) looked at the complex array of laws, both national and state, on decision-making and capacity for people with cognitive impairments in its 2014 report,Equality, Capacity and Disability in Commonwealth Laws. It recommended that laws and legal frameworks concerning individual decision-making should be guided by the National Decision-Making Principles and Guidelines. These are:

  • 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.

 

The ALRC took the view that “representative decision making” (its preferred term for guardianship and administration) be only a last resort and limited only to the least intrusive form and subject to strict safeguards. Representative decision-makers should at first instance give effect to the person’s will and preferences.

The ALRC argued that recognition at law of supported decision-making requires a new legal paradigm which recognises the role of supporters, including that:

  • a person’s decision-making ability must be considered in the context of available supports;
  • a person who requires decision-making support should be able to choose to be assisted by a supporter, but that supported decisions are recognised as the decisions of that person and not the supporter;
  • supporters have the ability to access personal information of the person supported, provide advice and assist the person and endeavor to see that the person’s decisions are put into effect; and
  • supporters should be under duties to promote the wellbeing of the person, to act honestly, diligently and in good faith, to support the person to consult with others and to assist the person to develop their own decision-making ability.

 

Until the law is fixed it is likely that everyone – consumers, families and service providers, will continue to muddle along. Guardianship and administration laws, as cumbersome as they can be, will continue to step into the breach where supported decision-making breaks down or where other parties require a high degree of certainty that a legal arrangement entered into by a person will stand up.

One obvious example is that the NDIA’s new specialist disability accommodation pricing framework. This signals that some NDIS participants will be able to access significant amounts of funding – up to $100,000 annually in some cases – to apply to an accommodation solution. It is unlikely that housing providers and financiers will rely on commitments made in the murky grey area of supported decision-making unless there is further law reform. We could in the meantime see a surge in appointments of guardians or administrators to deal with these issues. This is cause to keep the pressure on governments and lawmakers to bring the law into line with modern expectations of consumer choice and control.