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Carers NSW
Australia
11 November 2020
Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability
GPO Box 1422
Brisbane QLD 4001
DRCenquiries@royalcommission.gov.au
Restrictive Practices
Carers NSW welcomes the opportunity to provide a submission to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (the Royal Commission) on the use and impact of restrictive practices on people with disability and their carers.
A carer is any individual who provides care and support to a family member or friend who has a disability, mental illness, drug and/or alcohol dependency, chronic condition, terminal illness or who is frail. Carers NSW is the peak non-government organisation for carers in NSW. Our vision is an Australia that values and supports all carers, and our goals are to:
Be a leading carer organisation in which carers have confidence Actively promote carer recognition and support
e Actively support carers to navigate a changing service landscape that will be characterised by ongoing policy reform
e Promote connected community experiences and opportunities for carers that are inclusive of diverse carer groups
e Lead and advocate for carer-specific and carer-inclusive policy making, research and service delivery
e Continue to be a quality-driven, responsive and carer-focused organisation.
Carers NSW is pleased that the Royal Commission is seeking informed feedback on current models and practice of restrictive practice authorisation and recommends that the above be taken into consideration. For further information regarding this submission, please contact
Madeleine Gearsic [Ill
Yours sincerely,
Elena Katrakis
CEO
Carers NSW
SUPPOOTS ALL CARERS - AN AUSTRALIA THAT VALUES AND §— >> ©))> ALL CARERS > AN
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Introduction
‘Restrictive practice’ is defined in the Restrictive Practices Issues Paper as any action, approach or intervention that has the effect of limiting the rights or freedom of movement of a person. 1 They are often used or prescribed as a method to manage behaviours of concern which may be symptomatic of a particular disability or illness. Carers NSW acknowledges the negative consequences which may result from the use of a restrictive practice, set out in the Issues Paper, including physical injury, psychological harm, death, and damage to
2relationships. Carers NSW also recognises the complexities that surround the decisions made in relation to the use of restrictive practices, including the need to balance individual and community safety in the context of a person’s human rights.
This submission will explore the impact of restrictive practices on people who provide care and support to a person living with a disability. Carers are often implicated by decisions made in relation to these practices, particularly in relation to their own personal safety.
Where do carers fit?
The Carers NSW 2018 Carer Survey3 found that, of 1,830 respondents, almost 1 in 3 carers had been caring for over 20 years and half of respondents provided 60+ hours of care per week. This data emphasises the quantity and intensity of time spent between carers and those they care for across the lifespan, and subsequently highlights that carers are often a knowledge base in relation to their care recipient. Carer views are often critical in understanding effective strategies which do not involve restricted practices, as trialled by the carer themselves or other key support providers. This is particularly the case where communication, cognitive and other barriers exist.
Overall, nearly 70% of carer respondents cared for a person living with a condition where behaviours of concern may exhibit; this included people living with intellectual disability, autism spectrum disorder, mental illness and dementia. Over 95% of carers of people who may exhibit challenging behaviours reported that their care recipients required support with communication, cognitive and emotional needs (including decision making) and reading/writing, compared to around 50% of participants who care for a person with a different condition. While the survey did not directly address behaviours of concern, these findings indicate that a person with impaired decision making and/or challenging behaviours would likely require support to communicate their preferences and needs, as well as make appropriate decisions, including in relation to restrictive practices.
The NSW Carers Charter4, and the Statement for Australia’s Carers5 state that carers should be recognised for their valuable contribution and unique knowledge and experience. The associated Acts also state that carers should be adequately supported to achieve optimum wellbeing, to balance their caring and non-caring roles, and should be considered partners in
1 Commonwealth, State and Territory Disability Ministers, National Framework for Reducing and Eliminating the Use of Restrictive Practices in the Disability Service Sector, (1 May 2013). 2 Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (2020). Issues Paper: Restrictive Practices. 26 May 2020
3 Carers NSW (2018), Carers NSW2018 Carer Survey: Summary Report, Carers NSW: North Sydney
4 Carers (Recognition) Act 2010, Schedule 1 NSW Carers Charter
5 Carer Recognition Act 2010, Schedule 1 The Statement for Australia’s Carers
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care. In light of this, Carers NSW proposes that carers should be considered in two respects within the context of restrictive practices:
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Carers as partners in care Given the nature of the caring relationship and the types of support carers provide, they will likely have in-depth knowledge and experience relating to behavioural patterns, triggers which may cause escalation, timescales, and effective or ineffective supports based on historical strategies. Carers will likely have experience which informs what environmental, physical and psychological factors may mitigate the requirement for restrictive practice, and the likely impact of using a restrictive practice on both the care recipient and the carer. Carers should be considered expert in providing evidence relevant to a restrictive practice authorisation and the decision to use alternative methods to safeguard the individual.
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Carer as at risk of harm Behaviours of concern can place carers at risk of physical and psychological harm. Such harm can result in a variety of detrimental effects, including carer burnout and the loss of a substantial support network for the care recipient, and environmental damage in the home or community which impact negatively on the carer and care recipient. Carers can also be at risk of psychological harm as the direct result of restrictive practice.
Carers NSW advocates that Australian and State and Territory governments should review their models of restrictive practice authorisation. In NSW, the State Government is presently reviewing the current model to promote individual empowerment and ensure adequate safeguards for individuals living with a disability. Carers NSW commends this initiative.
Consent
Under the current restrictive practice authorisation (RPA) model, a restrictive practice can only be authorised if informed consent is provided by the person living with a disability or their guardian and/or carer. The final decision is based on a number of factors, including consideration of how that person wants to be supported or, in cases of impaired mental capacity and decision making, how their guardian/carer wants them to be supported.
Carers should be informed at all times to promote awareness and informed consent. In the event that a legal guardian consents to the use of a restrictive practice, the law states that the guardian must act in the best interests of the individual, however a carer can only act in the best interests of the individual if they are fully informed of all aspects, including information in relation to the behaviour support method.
Carers NSW supports the notion that carers be involved in decision making with regards to authorisation. Carers NSW recommends there be a shift from the notion that carers ‘can’ be included to carers ‘must’ be included where this is in the best interests of the care recipient and carer. This shift demands that adequate effort be made to identify if an informal caring arrangement is in place. Carers can contribute valuable knowledge relating to information typically used to inform decision making and authorisation, e.g. evidence of how the individual wants to be supported and information on how restrictive practice has been used in the past.
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Carers NSW advocates for increased clarity with regards to the legal capacity, rights and responsibilities of carers, and recommends that this be supported by robust policy and staff training. Involvement of a carer in the RPA process for the purpose of establishing consent can act as a safeguard for the person living with a disability.
Carer inclusion
The decision to authorise a restrictive practice is complex, and decision makers need to consider a variety of factors. Many of the factors listed can be informed by a carer perspective, including a care recipient’s culture, behaviours, support needs, risk to self and others, how and why a person uses a behaviour of concern, evidence supporting behaviour support strategies (particularly non-restrictive practices), skills and resources. It is important to note that the impact on carers is not considered within the list of factors. This is concerning for a number of reasons, particularly given that carers provide day-to-day support to individuals, and carer overall health and wellbeing directly impacts on the outcomes for the person they are caring for.
It is noted that six principles guide thinking about RPA; these include person centred and least restrictive principles. Carer involvement in decision making and authorisation is paramount in gaining a detailed and accurate understanding of how restrictive practices (or alternative practices) can be both person centred and least restrictive. State and Commonwealth legislation also proposes that carers should be considered partners in care57 ; carers should therefore be included in discussions to determine whether a restrictive practice will achieve the desired outcomes.
Monitoring and regular review are also principles developed to ensure restrictive practices are effective and time specific. These core aspects should be inclusive of feedback from the carer, who will likely be able to inform of:
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The individual and carer’s lived experience of the restriction
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The impact and effectiveness of the restrictive practice used
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Whether the restrictive practice should continue
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The provider’s approach to enacting the restriction, including what was and wasn’t done well
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Options for improvement if the restricted practice is to continue The review process should also include consultation with the carer about their own coping, including assessment of their capacity to sustain the current level of support.
Risks
Carers’ knowledge and experience is useful in determining what risks of harm exist and how these may be mitigated, especially without resorting to restrictive practices. Carers are able to advise on particular triggers that may cause risk behaviours, and alternatives to these triggers. Carers NSW also believes that carers should be consulted and informed if
6 Carers (Recognition) Act 2010, Schedule 1 NSW Carers Charter
7 Carer Recognition Act 2010, Schedule 1 The Statement for Australia’s Carers
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restrictive practices are being considered so that suitable risk assessment and planning can be undertaken.
Information and education
Carers should be made aware of the avenues in which they can be included in decision making. This may be achieved through provision of a written or verbal statement, involvement in behaviour support planning, or by providing feedback and advice via a service provider or advocate. Carers would significantly benefit from education and resources in behaviour support. Carers NSW advocates that adequate information be gathered prior to a decision, and the appeals processes are made clear for families and carers.
Support planning distinct from behaviour support planning
Carers NSW proposes that a clear distinction between support planning and behaviour support planning can establish clarity and direction for individuals, carers and providers. Each plan should be viewed as distinctly separate from the other, and used to achieve a different purpose.
Issues relating to consistency of approach across settings further highlights the need for distinction between support planning and behaviour support planning. Carers NSW proposes that support planning which occurs when a person is first engaged with a service should involve the collaboration of involved supports and services to the fullest extent possible. This should be a preventative approach and a means to understanding the whole person in context. Behaviour support planning is time and decision specific, and should occur in conjunction with all supports where behaviour support and management is required. A consistent approach to managing behaviours of concern is promoted when all relevant professionals are briefed on the restriction and behaviour support plan. Carers NSW also advocates that robust support and behaviour support planning is underpinned by strong relationships between the individual, the carer and the provider.
The needs of carers in restrictive practice authorisation
Families and carers may sometimes need support to participate in the decision making process without feeling pressured or influenced. Carers NSW subsequently recommends that carers receive formal and expert emotional support to minimise the impact of the decision making process. It is also recommended that the decision be collaborative to the fullest extent possible in order to minimise decision making pressure for carers, who may feel that by providing information they are the final and sole decision maker. Open dialogue and conversation with carers to ensure they feel informed and to answer any questions will improve the effectiveness of decision making. The NSW Carers Charter8 and the Statement for Australia’s Carers9 state that support for carers should be “timely, appropriate, responsive & accessible”; this is particularly relevant in the case of restrictive practices.
8 Carers (Recognition) Act 2010, Schedule 1 NSW Carers Charter
9 Carer Recognition Act 2010, Schedule 1 The Statement for Australia’s Carers
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Confidentiality and information sharing
Research suggests that some professionals use “confidentiality smokescreens” as a way of withholding information from carers10. This can have implications for carer wellbeing and safety, and may negatively impact on the sustainability of the caring role. A lack of appropriate and ethical information sharing may also have a detrimental impact on care recipient outcomes, particularly with regards to challenging behaviours, risk of harm and restrictive practice. The current service and political climate relies on individuals and families maintaining their own care and support structures, but these structures can be undermined by a lack of information and transparency. Care recipient privacy must be balanced with a carer’s right to receive information relevant to their caring role which safeguards both the carer and their care recipient.
Summary
Carers are almost always informal advocates for the person they care for, experienced in supporting people living with disability to express their preferences to ensure all actions are undertaken in their best interests. Feedback provided by the carer population as a whole is valuable in understanding the effectiveness of restricted practices across all settings, as carers support vulnerable people across disability, mental health, drug and alcohol, health and ageing sectors. Carer feedback is vital to understanding the lived experience of a person living who disability who may manifest challenging or risk behaviours, and will directly inform policy to support the initiative to reduce and eliminate restrictive practices.
Carers NSW strongly recommends that current policy be strengthened to better balance the risk of challenging and potentially harmful behaviours with the right of individuals and carers. Carers NSW advocates that carers be considered as expert decision makers, with further recommendation that legislation enforce carer inclusion in assessment and authorisation of restrictive practices wherever possible. Adequate and proportionate information sharing is paramount to effective decision making, and will be supported by education and training which is founded on strong ethical frameworks. Existing decision making support, both formal and informal, should be identified and upheld to the fullest extent possible.
1°Clements, L. (2011 ), Carers and Their Rights: The Law Relating to Carers, Fourth Edition, Carers UK: UK, p92
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