A national approach to regulation

The National Framework and the NDIS

8.36       The ALRC recommends the development of the NDIS system take into account the National Decision-Making Principles. Among other things, this would mean that provisions regulating restrictive practices would: 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.^[59]

8.37       The ALRC recognises the complexity of incorporating supported decision-making into regulation of restrictive practices, but considers 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.

8.38       The National Framework is an important platform for reform and embodies the commitment of all jurisdictions to collaborate and evaluate progress against a set of principles and strategies. The National Framework is based on the human rights encapsulated in the CRPD, a person-centred focus and international research on best practice.

8.39       The National Framework incorporates guiding principles, including reference to a ‘Person-Centred Focus’, which states that

people with disability (with the support of their guardians or advocates where required) are the natural authorities for their own lives and processes that recognise this authority in decision making, choice and control should guide the design and provision of services.^[60]

8.40       The National Framework also provides for ‘maximum respect for a person’s autonomy’, including:

i.    recognising the presumption of capacity for decision making;

ii.   seeking a person’s consent and participation in decision making (with support if necessary) prior to making a substitute decision on their behalf; and

iii. engaging the appropriate decision maker and seeking consent where appropriate, where a decision must be made on behalf of a person.^[61]

8.41       The corresponding core strategy states that one of the key implementation areas is the ‘availability of tools to assist people with disability and their guardians or advocates (where appropriate) to participate in decision making’.^[62]

8.42       However, the National Framework has been criticised for omitting reference to art 12 of the CRPD and, in particular, the obligation on Australia to ‘take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity’.^[63]

8.43       The National Decision-Making Principles are a vehicle for the Australian Government and COAG to give effect to the right of persons with disability to have equal recognition before the law captured in art 12 of the CRPD. The National Decision-Making Principles make prominent the need to respect the will, preferences and rights of persons with disability in making decisions affecting their lives.

The National Decision-Making Principles

8.44       Taking the National Decision-Making Principles into account in the context of restrictive practices would mean that, as far as possible, decisions about restrictive practices should ultimately be those of the person potentially subject to them.

8.45       The National Decision-Making Principles can be interpreted as being consistent with best practice alternatives to restrictive practices, which consider the causes of behaviour and plan for positive behaviour support.^[64] For example, a person may require support to make decisions about the use of restrictive practices under a behaviour support plan.

8.46       The story of ‘Vincent’ demonstrates the importance of providing for supported decision-making and complaint mechanisms:

Vincent is 32 and lives in a major city. He has an intellectual disability with complex behaviour. He has lived in supported accommodation since he was a teenager. His parents, Maria and Carl, are increasingly frail and visit him as often as they can. One visit, they become concerned about the amount of medication used for Vincent. They raise their concerns with the support worker who says that the behaviour management recommended is too hard as there aren’t enough workers on the evening shifts … Maria and Carl begin to worry that making a complaint may make matters worse for Vincent, but the manager explains that the formal process helps the service understand issues and make improvements. They call Hannah (an independent advocate) for advice. At their request, Hannah joins them for a meeting with the service. The staff say that Vincent has become increasingly violent and they are concerned about their safety and the safety of other residents.^[65]

8.47       The management of Vincent’s behaviour of concern requires a considered, multi-pronged response:

The family and the service agree that they need to update Vincent’s behaviour support plan, to support him earlier. The service agrees that workers need extra     training on behaviour management, to avoid the use of medication. The service reviews its use of restrictive practices and organises training to improve behaviour support planning and implementation, and working with families to plan and review behaviour support.^[66]

8.48       An NDIS system that is informed by the National Decision-Making Principles may enhance the prospects for Vincent to directly express his will and preferences, through having the right to communication support from anyone of his choice—parents, carers, fellow residents or independent advocates.

8.49       Supported decision-making could also help reduce and avoid the use of restrictive practices for persons with disability. Research has found that many persons with disability feel unsafe in the situations and environments they are faced with.^[67] Many find it challenging to maintain their privacy and safety where staff numbers are low or where there is no active engagement.^[68] They may rightly feel angry when services are not delivered but often feel powerless in disability and mental health facilities. Therefore, they may communicate their views about their environments and situations through their challenging behaviours.^[69]

8.50       If the NDIS system is consistent with the National Decision-Making Principles, a family member or carer of an NDIS participant with intellectual disability could help to communicate to the disability service provider, for instance, the reasons behind any ‘behaviours of concern’—such as, discomfort in an environment, boredom with an activity or strong aversions to certain food. Adjusting the environmental factors or stimuli may eliminate or moderate the need for any restraints or seclusion to be used.

Communication of will and preferences

8.51       Communication is crucial to a supported decision-making model.^[70] Loretta Woolston identified the lack of specialised communication support as a decisive issue for people with complex communications needs in relation to restrictive practices:

complex communications consumers of Disability Restrictive Practices (RP), seclusion, containment and chemical restraint have little to no systemic communication systems to assist and support them to participate in their health, legal and complaint systems decision making. They are discriminated against by the omission or lack of professional interpreter and translating services as currently provided by the Australian, states and territories governments to aboriginal, deaf or linguistically challenged persons.^[71]

8.52       Silence from or acquiescence by persons with disability is taken as consent when this behaviour may in fact be the effect of disempowerment, institutionalisation and social isolation. Jo Watson’s research on the communication of people with severe and profound disability demonstrates that it is possible to discern their wishes and preferences through the investment of time and effort.^[72]

8.53       Support should also be available for people who do not have family or friends who can assist them in communicating their will and preferences. In some decision-making, the ‘representative’ of the person—a state guardian, administrator or a Commonwealth representative should be directed by the person’s will, preferences and rights in making decisions for them.

8.54       Advance care directives may help determine a person’s will and preferences. The OPA (SA and Vic) submitted that having support measures in place would be useful in the care management of people with disability.

A person with a mental illness who has a Ulysses agreement may be calmer because of an      effective pre-planned strategy to deal with distress when unwell; and a person with an intellectual disability who can plan and control their life and has necessary supports will be       less likely to be in the types of situation that lead to restrictive practices, such as overcrowding and boredom.^[73]

8.55       The OPA (SA and Vic) expressed some concerns about how supported decision-making in relation to consent to the use of restrictive practices will be applied under state and territory mental health law or disability legislation.^[74] The ALRC recommends review of these state and territory laws.^[75] The principal aims of such a review would be to encourage supported decision-making, and to shift from a best interests test to one directed by a person’s will, preferences and rights.^[76]

8.56       In the ALRC’s view, a distinction should be maintained between lawful substitute consent to the use of the restrictive practice by a guardian or other authorised person and the support provided by a family member or carer to the person with disability in determining their will and preferences.

8.57       It is expected that, in a majority of cases, supporters will help discern a person’s will and preferences concerned with restrictive practices. However, the NDIS system and any other national approaches must also make provision for situations where a person does not have informal support or it is otherwise impossible to determine their will and preferences. The ALRC recommends that in these cases, the human rights relevant to the situation apply in making decisions regarding restrictive practices.^[77]

8.58       The ALRC disputes the assertion that if a person can be supported to give consent to a restrictive practice, then they may not be in need of restraint or seclusion.^[78] The ‘level of insight’ into one’s behaviour,^[79] often understood as mental capacity, is not determinative of a person’s capacity to consent to or refuse decisions about their bodily integrity, liberty, freedom, wills and preferences. This is because a person with an intellectual, cognitive or psychosocial disability may clearly express their will and preferences directly themselves at the time of the proposed use of the restrictive practice, have done so previously or through communication support, without needing to meet a certain level of mental capacity. The National Decision-Making Principles embody this stance.

8.59       PWDA and the Disability Rights Research Collaboration expressed concern that the initiatives to regulate, rather than eliminate, restrictive practices legitimise potentially serious breaches of human rights.^[80] They cautioned that ‘a perverse outcome’ may result if a national framework enabled people with disability to consent to very serious breaches of their fundamental rights.^[81]

8.60       The ALRC agrees that ‘reforms to the legal framework regarding legal capacity should be aiming to reduce and limit the potential for these further rights violations to occur’.^[82] A national approach to regulating restrictive practices is the first phase in a longer-term, iterative process towards the elimination of any rights violations against persons with disability. A stepped model is needed, along with rights education and resources devoted to guidance and training of persons with disability, their supporters and representatives.

8.61       Many stakeholders emphasised the importance of safeguards in the use of restrictive practices.^[83] PIAC proposed that any national or nationally consistent approach should ensure that restrictive practices

are only implemented as a last resort; are implemented for the least amount of time possible; are recorded, monitored and reviewed; have tight safeguards in place that are focused on minimising risk to staff, patients, carers and family; and are undertaken with a focus on ensuring decency, humanity and respect at all stages.^[84]

8.62       Taking the National Decision-Making Principles and the Safeguards Guidelines into account in the regulation of restrictive practices would mean that any representative decision-making would be in a form least restrictive of the person’s human rights; appealable; and subject to regular, independent and impartial monitoring and review.

A national approach in other sectors

8.63       The National Framework currently applies only to the disability services sector. The ALRC acknowledges the ongoing work of the Disability Reform Council,^[85] but recommends that the Australian Government and the COAG also develop a national approach to restrictive practices across other relevant sectors.

8.64       Stakeholders were very supportive of the ALRC’s proposal for a national or nationally-consistent approach to restrictive practices.^[86] The National Mental Health Consumer and Carer Forum and the Mental Health Council of Australia (NMHCCF and MHCA), for example, recommended the development and adoption of

nationally consistent legislation governing restrictive practices, of which seclusion and restraint are included, be developed and adopted across all states and territories. This legislation should include standardised terminology and definitions and set clear and effective practice standards.^[87]

8.65       The Disability Discrimination Legal Service (DDLS) recommended that a national framework or approach ‘be binding on organisations that receive federal funding, via inclusion in service agreements’.^[88] The OPA (Vic) suggested the creation of a National Senior Practitioner (mirroring the role of Victoria’s Senior Practitioner) to monitor and audit the use of restrictive practices in aged care facilities.^[89]

8.66       The OPA (SA and Vic) identified the challenge of reducing and eliminating the use of restrictive practices in Australia is exacerbated by ‘the lack of uniform legislative controls and reporting requirements and the absence of equivalent key players across all jurisdictions’.^[90]The solution may lie in ‘clear, uniform legislative controls and reporting requirements’ for the use of restrictive interventions in all government funded and supported accommodation services, modelled on provisions of the Disability Act 2006 (Vic).^[91] The OPA (SA and Vic) called for coverage of both federal and state funded and supported accommodation, including aged care facilities, schools and prisons.^[92]

8.67       Stakeholders stressed the need for a national approach beyond the disability services sector and the NDIS.^[93] Disability Rights Now recommended that, due to the use of restrictive practices in a range of contexts, ‘any framework on restrictive practices needs to recognise this, and be part of a wider overarching strategy addressing violence and abuse of people with disability in general’.^[94]

8.68       The ALRC recommends the regulation of restrictive practices cover the use of restrictive practices in a range of settings.^[95] This is particularly important given that persons with disability may experience restrictive practices in a variety of contexts, including: supported accommodation and group homes; residential aged care facilities; mental health facilities; hospitals; prisons; and schools.^[96] Harmonising laws and reducing red-tape related to restrictive practices in all relevant sectors, and not just disability services, may result in cost benefits for service providers around Australia.^[97]

8.69       Concerns about restrictive practices in aged care were highlighted by several stakeholders, as well as the Senate inquiry into dementia.^[98] The Senate inquiry recommended ‘the Commonwealth develop, in consultation with dementia advocates and service providers, guidelines for the recording and reporting on the use of all forms of restraints in residential facilities’.^[99] Similarly, the Office of the Public Advocate (Vic) highlighted concerns about ‘the high use of restrictive interventions on residents of aged care facilities’ and stated that it ‘would like to see greater regulation and on-site auditing of this practice’.^[100]

8.70       Justice Connect and Senior Rights Victoria supported national regulation in aged care ‘due to the failure of current laws to provide a comprehensive framework’ for decisions affecting people with ‘disabilities solely related to ageing’.^[101]

8.71       The OPA (SA and Vic) submitted there is an ‘alarming lack of Commonwealth oversight’ over the high use of restrictive interventions, particularly chemical restraints, on residents of aged care facilities. They urged the ALRC to

carefully consider how the Commonwealth decision-making model can both provide for supported decision-making arrangements, and establish protective mechanisms in relation to the use of restrictive practices in aged care facilities.^[102]

8.72       There are two comprehensive guidelines issued by the Department of Health in relation to supporting restraint-free practices in residential aged care and community aged care.^[103] However, stakeholders expressed strong support for binding national regulation rather than just guidelines.

8.73       The use of restrictive practices on people with mental illness in a variety of situations is recognised by the National Seclusion and Restraint Project. The Project extends beyond hospitals and health facilities to include community, custodial and ambulatory settings.^[104] The national study seeks to capture best practice in reducing or eliminating seclusion and restraint around Australia and it may help produce an evidence base upon which a national approach could be developed.^[105]

8.74       Smoke-free hospitals may be environmental restraints on people with mental illness, particularly involuntary patients, if no exemption for them applies.^[106] The NMHCCF asserted that any service that imposes smoking bans on consumers at a time when they are acutely unwell are ‘engaging in cruel and inhumane treatment and demonstrating a complete indifference to the distress of this consumer group’.^[107] Furthermore, non-compliance with anti-smoking policies by patients appears to trigger the use of restrictive practices and rates of seclusion.^[108]

Other issues

8.75       The ALRC does not recommend specific mechanisms for enforcing regulation of restrictive practices, recognising the many options for reform and the expertise held by Australian Government departments and agencies, COAG and others in this area.

8.76       However, it is worth noting that stakeholders expressed various views on the form a national approach should take.^[109]Many of them submitted that some binding form of regulation is preferred or necessary. For example, the DDLS submitted that it would be ‘insufficient’ to simply have a framework and hope that the relevant organisations will abide by its ‘guidelines’.^[110]

8.77       The NMHCCF warned against ‘the illusion of compliance’ in applying a national framework to service agreements that are not enforced.^[111] People with Disabilities WA and the Centre for Human Rights Education preferred regulation over voluntary codes, like that in Western Australia,^[112] because voluntary codes provide useful guidance but cannot guarantee implementation by all service providers.^[113]

8.78       Legal Aid Queensland favoured a legislative scheme which imposed a positive duty on carer organisations to provide all practical help to support an adult with impaired capacity with respect to decisions about restrictive practices.^[114] This is because, without such an obligation, there has only been a ‘minority of cases’ where their lawyers have successfully advocated for funded carers to consider the proposed use of restrictive practices and develop supported decision-making for the adult.^[115]

8.79       The OPA (SA and Vic) supported a comprehensive approach that addresses current gaps across sectors and jurisdictions which incorporates legislation and national guidelines, codes of practice or policy directives, as well as education, training and guidance.^[116] Other submissions called for laws to incorporate key principles^[117] or to mandate training that will complement the use of strategies to reduce restrictive practices such as positive support behaviour plans.^[118]

8.80       Monitoring the use of restrictive practices is an essential element of any regulatory framework. The Australian Government and COAG’s commitment to implement a data monitoring system, that integrates existing arrangements by 2018 under the National Framework, may form the basis for the design of a national mechanism for enforcement in relation to restrictive practices in Australia. Stakeholders suggested some ‘touchstones’ for monitoring the use of restrictive practices may relate to the veracity of the data, specifically, the accuracy in staff recognition of restrictive practices and in recording instances following clear data collection principles.^[119]