ALRC submission: Proposal for a National Disability Insurance Scheme Quality and Safeguarding Framework

30 April 2015

Dear Sir/Madam,

I  refer  to  the  invitation  for  submissions  on  the  Disability  Reform  Council’s  consultation  paper  Proposal  for  a National Disability Insurance Scheme Quality and Safeguarding Framework (the consultation paper).

The ALRC makes the following submission in response to the consultation paper. The submission draws on the recent experience of the ALRC in its disability inquiry, which culminated in the final report Equality, Capacity and Disability in Commonwealth Laws (ALRC Report 124), tabled in the Australian Parliament on 24 November 2014.

The ALRC Equality, Capacity and Disability in Commonwealth Laws report

The ALRC made a number of recommendations relevant to the recognition of supported decision-making within the NDIS.  These included that:

• the  National  Disability  Insurance  Scheme  Act  2013  (Cth)  and  NDIS  Rules  should  be  amended  to include  provisions  dealing  with  supporters  consistent  with  the  ‘Commonwealth  decision-making model’ recommended by the ALRC;[1]
• the  NDIS  Act  and  Rules  should  be  amended  to  include  provisions  dealing  with  representatives (presently called ‘nominees’) consistent with the Commonwealth decision-making model.[2]

The Australian Government has not yet responded to the ALRC Report and legislative amendments to implement its recommendations are not anticipated in the short term.

As  the  ALRC  Report  recognised,  the  NDIS  Act  already  provides  for  supported  decision-making  in  a  manner largely consistent with the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and the ALRC’s recommended National Decision-Making Principles.[3]

In this context, even in the absence of legislative reform, this submission suggests how reference to supported decision-making  might  be  more  fully  incorporated  in  the  NDIS  quality  and  safeguarding  framework  (the Framework).

The Framework and supported decision-making

The consultation paper states that the Framework will replace existing state-based arrangements and is ‘designed to give participants choice and control over their supports and allow people to take reasonable risks to achieve their goals’ consistent with the overall approach of the NDIS (p 10).

The central point that the ALRC would like to make is that the Framework provides an opportunity to ensure that:

• supported decision-making by NDIA participants is encouraged;
• representative decision-makers (such as NDIS nominees) are only appointed as a last resort and not as an alternative to appropriate support; and
• the will, preferences and rights of participants direct decisions that affect them.[4]

The consultation paper does not make explicit reference to supported decision-making principles. However, these are consistent with the overall approach of the Framework and, in the ALRC’s view, would assist in the pursuit of the aims of the NDIS. This following suggests how reference to supported decision-making might be more fully incorporated in the Framework.

Choice and control

The  consultation  paper  states  that  the  Framework  has  been  shaped,  in  part,  by  the  principle  of  choice  and control—that is, the NDIS should maximise opportunities for people with disability to make decisions about their supports (p 4).

However,  the  text  of  the  proposed  Framework  does  not  make  explicit  reference  to  one  of  the  central  ways  in which choice and control can be promoted—the principle that persons who require support in decision-making should  be  provided  with  access  to  the  support  necessary  for  them  to  make,  communicate  and  participate  in decisions that affect their lives.[5]

Recognising  supported  decision-making,  directed  by  a  person’s  will  and  preferences,  seems  essential  for  the meaningful exercise of choice and control (and a ‘risk-based and person-centred approach’), and this should be emphasised in the Framework.

Explicit  recognition  of  supported  decision-making  would  be  consistent  with  the  overall  approach  of  the Framework  and  its  existing  statements  about,  for  example,  the  importance  of  support  from  family,  carers  and community as a ‘natural safeguard’ and  as ‘essential in enabling people with disability to make informed choices as consumers’ (p 11). In this context, the ALRC also suggests that the definition of ‘supports’ (p vi) might include reference to supports in decision-making.

The reference to ‘actively supporting participants to develop their self-advocacy and decision-making skills and understand  their  rights’  (p  12)  also  provides  an  opportunity  to  incorporate  recognition  of  supported  decisionmaking.

Presumption of capacity

The consultation paper states that the Framework has been shaped, in part, by the presumption of capacity—that is,  the  NDIS  should  presume  that  all  people  with  disability  have  the  capacity  to  make  decisions  and  exercise choice and control (p 4).

The  principal  idea  in  any  discussion  of  legal  capacity  is  that  adults  have  the  right  to  make  decisions  for themselves. This is frequently expressed in terms of a presumption of legal capacity, which may be rebutted if circumstances demonstrate that the requisite level of capacity is lacking in that context.

In its Report, the ALRC stated that, in this context, the emphasis should be placed on the right of people to make decisions, rather than on the qualification intrinsic in a ‘presumption’. The conceptual difficulty in starting with a presumption of legal capacity as an overarching principle is that it already contains a binary classification—of those who have legal capacity, and those who do not.

The ALRC suggests, therefore, that the Framework refer instead to the ‘right of all adults to make decisions that affect their lives and to have those decisions respected’, as expressed in National Decision-Making Principle 1.6

Will and preferences decision-making

The consultation paper states, in relation to safeguards for participants who manage their own plans, that a key aim of the NDIS is to ensure that participants  ‘are able to determine their own best interests,  have choice and control, and be equal partners in decisions that affect their lives, to the full extent of their capacity’. This includes taking control of the planning and delivery of supports if they wish (p 67).

In  this  context,  there  is  an  opportunity  to  highlight  the  desirable  shift,  consistent  with  art 12  of  the  CRPD,  to ensuring  that  the  ‘will,  preferences  and  rights’  of  persons  who  may  require  decision-making  support  direct decisions that affect their lives, not another person’s assessment of their ‘best interests’.[7]

Stakeholders  in  the  ALRC  inquiry  strongly  supported  this  shift  in  emphasis  from  ‘best  interests’  to  will  and preferences decision-making. Even where ‘best interests’ are defined by giving priority to will and preferences, the standard of ‘best interests’ is still anchored conceptually in substitute decision-making regimes from which Australia should be seeking to depart.[8]

Restrictive practices

The ALRC recommended that the Australian Government and the Council of Australian Governments should take the National Decision-Making Principles into account ‘in developing the national quality and safeguards system, which will regulate restrictive practices in the context of the National Disability Insurance Scheme’.[9]

Among  other  things,  this  means  that  provisions  regulating  restrictive  practices  should:  encourage  supported decision-making before the use of such practices; provide for the appointment of representative decision-makers only as a last resort; and require that the will, preferences and rights of persons direct decisions about any use of restrictive practices.

The ALRC recognised the complexity of incorporating supported decision-making into regulation of restrictive practices, but considered that art 12 of the CRPD should help inform any future national approach to restrictive practices—in particular, by ensuring that decisions about restrictive practices are based on the ‘will, preferences and rights’ of the person subjected to them.

To some extent, the consultation paper’s stated approach to restrictive practices in the NDIS (pp 78-79) recognises supported decision-making—for example, by referring to ‘ensuring that families and others who know the person well should be used to help ensure the person understands and, to the greatest extent possible, agrees with the behaviour support plan’ (p 79).

The ALRC does not have a view on how restrictive practices might be authorised without the agreement of the person concerned—if, in fact, restrictive practices should be ever be permitted in such circumstances. However, whatever   mechanism is used, the decision-maker should have obligations consistent with the ALRC’s recommended Will, Preferences and Rights Guidelines. [10]

That is, where a representative is appointed to make decisions for a person who requires decision-making support:

• The person’s will and preferences must be given effect.
• Where the person’s current will and preferences cannot be determined, the representative must give effect to what the person would likely want, based on all the information available, including by consulting with family members, carers and other significant people in their life.
• If  it  is  not  possible  to  determine  what  the  person  would  likely  want,  the  representative  must  act  to promote and uphold the person’s human rights and act in the way least restrictive of those rights.
• A representative may override the person’s will and preferences only where necessary to prevent harm.

Thank  you  for  this  opportunity  to  comment  on  the  consultation  paper.  If  you  require  any  further  information please do not hesitate to contact me on (02) 8238 6319.

Yours sincerely,

Professor Rosalind Croucher AM