IAC advice on Enhancing Personal Safeguards advi… · Web viewEnhancing personal safeguards Agenda Attachment. ... Kendrick’s definition of developmental safeguards ... (Johnson

Enhancing personal safeguards

Independent Advisory Council of the National Disability Insurance Scheme

How can the NDIS help participants enhance their personal safeguards in order to experience greater independence, economic participation and community inclusion?

November 2015

Briefing paper: Independent Advisory Council of the NDIS November 2015 Page 1


Table of contents

Executive Summary 3

Recommendations 5

Section 1 Context: a society fearful of risk 8

Section 2 The case for a different approach to risk 9

Safeguards and risk in the NDIS context 12

Implications for the NDIS 13

Section 3 Assisting people with disability to enhance their personal safeguards 14

Section 3A Assisting people with disability to plan for their own safety 14

Requirements of planning for safety and safeguards 14

Effective processes to manage risk 20

Implications for the NDIS 22

Implications for preventative safeguards 23

Section 3B Assisting people with disability to identify and report services that are below standard as well as abuse and neglect 23

Developing personal safeguards 24

Facilitating relationships 24

Empowering people with disability to speak for themselves 25

Implications for the National Disability Insurance Agency 27

Bibliography 29

Appendix 1 Common core principles to support self-care 34

Appendix 2 Supported decision-making tool 35

Appendix 3: Risk enablement panel 37

Appendix 4 What could work to promote risk enablement, independence and control while at the same time ensuring safety? 41

Appendix 5 A guide to identifying and incorporating intentional safeguards 44

Appendix 6 Walker, M, Fulton, K & Bonyhady, B, 2013, A Personalised Approach to Safeguards in the NDIS 49

Appendix 7 National Disability Services August 2014 52

Zero Tolerance: a framework to prevent and improve sector responses to abuse, neglect and violence experienced by people with disability 52



Executive Summary

The National Disability Insurance Scheme (the Scheme; NDIS) represents a significant opportunity for people with disability to exercise choice and control and experience an ordinary life of greater independence, economic participation and social inclusion. For many embracing new ways of doing things will involve experiencing the dignity of risk, critical for the formation of identity and independence (Ponton, 1997, Le Breton, 2004).

In this context, personal safeguards are integral to ensuring people with disability are safe while also enjoying the freedom to maximise their independence. The IAC paper “Reasonable and Necessary support Across the Lifespan: An Ordinary Life for People with Disability” (2014) recognised that an overly cautious approach to risk severely limits opportunities for people with disability to lead ordinary lives.

This paper acknowledges that any discussion about risk and safeguards exists within a broader context. The development of a NDIS National Quality and Safeguards Framework (the Framework) is an important development in this regard and provides a forum to establish a new equilibrium between independence, choice and control and the dignity of risk on the one hand and calls for safety on the other. The new Framework must resolve the tension between the current risk averse framework built on conservative state and territory legislation with the growing emergence of choice and control as a basic right of people with disability. This paper argues that experience from the UK is instructive in assisting all actors, including the NDIS, to work toward reframing risk through a significant program of well-coordinated change. If this does not occur, then positive change is unlikely.

The IAC believes that the discussion about personal safeguards is central to enabling people to experience positive risk, build their capacity and is fundamental to the NDIS’s insurance approach. Hence the IAC is focused on the role of the NDIS in enabling people with disability to enhance their personal safeguards to safely experience the dignity of risk. The target for this discussion is broader than participants because it is in the interest of the Scheme to prevent people slipping into the need for reasonable and necessary support as a result of a lack of planning to prevent harm.

The paper focuses on primary prevention and the critical and necessary elements of personal safeguards including self advocacy skills, and relationships with people who are not paid to be there. Additional safeguards are required for some vulnerable participants

The paper argues that priority be given to people with disability to identify and implement personal safeguards and to build self advocacy skills. These elements of capacity building, together with support with decision making are multiple sides of empowering people with disability consistent with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Investment in



capacity building of this nature will contribute to people’s personal safety and their confidence to experience increased independence, economic participation and community inclusion.

Nationally there are currently very few resources devoted to this critical area of capacity building.

In considering the approach the NDIS might take to assist people with disability to enhance their personal safeguards, the paper outlines requirements for planning arguing that intentional individualised safeguards need to be built on an understanding of vulnerability and other factors that increase or reduce the chance of harm. Systems and services that effectively enable risk are an important part of the enablement of risk and safeguarding process. While the paper discusses specific elements that are relevant to NDIS participants its central approach is applicable to all people with disability. In many cases appropriate safeguards (amongst other things) mean that some people with disability may not need to access the Scheme for paid supports as they are active in their community, have a network of friends and family and aren’t socially isolated or in segregated settings. These are natural safeguards which are applicable to all citizens.

The paper examines how the NDIS can assist people to identify services that are below standard as well as report abuse and neglect. Two clear strategies are proposed. The first involves supporting people with disability to have relationships with people who are not paid. The Intellectual Disability Reference Group of the IAC will provide guidance on this issue in 2016. The second issue relates to empowering people with disability to speak for themselves. The role and limitations of self advocacy are discussed and the importance of structures to support people to speak for themselves is emphasised.

The recommendations in the paper are focused on practical measures the Agency can adopt consistent with its functions under the National Disability Insurance Scheme Act 2013 (NDIS Act) to assist people with disability to enhance their personal safeguards.

Each section of the paper concludes with implications for the National Disability Insurance Agency.

(Note: DSS has produced a consultation paper (Feb 2015) and a consultation report (released in Nov 2015) on the Framework. The attached IAC advice has considered the consultation paper but does not respond to the consultation report due to the timing of the report’s release.)



Recommendations

In making these recommendations the IAC thinks that they are also applicable to the range of contracts that the Agency may enter into that relate to safeguarding.

Recommendation 1: The Agency prioritises assisting people with disability to develop personal safeguards and to speak for themselves.

Information

Recommendation 2: The Agency, and its outsourced partners, promotes information about safeguards by:

a. Highlighting the importance of building safeguards in its information and resources. The notion of safeguards should be coupled with the now familiar concept of “choice and control” so as to begin to influence the mindset of all stakeholders.

b. Building an understanding of safeguards into pre-planning, planning and plan implementation conversations.

c. Initiating pre planning seminars on developing personal safeguards. The aim will be to assist people to develop a safeguarding mentality from the start of their relationship with the Scheme.

d. Developing specific frameworks that assist people to plan their own safeguards.e. Identifying the types of risks that people may generally face and developing resources

to assist people to develop safeguards, for example:i. Safeguards for people who self manage (e.g. safeguards in hiring staff, having

the right insurance etc.)ii. Safeguards for people moving into their own homes, and

iii. Safeguards in taking a job.

Representation

Recommendation 3: That the Agency continues to promote the importance of innovative practices amongst service providers. This includes supporting people with disability to be safe while enjoying the freedom to maximise choice and control and live an ordinary life in the community.

Recommendation 4: That the Agency exercises its role as a key influencer in the sector by actively contributing to the discussion on the National Framework on Quality and Safeguards to ensure the Framework promotes innovation, continuous improvement and best practice in the provision of supports, allows people to expect consistent standards and safeguards wherever they live in Australia, and effectively balance choice and control.



Information, Linkages and Capacity Building

Recommendation 5: The Agency (through its approach to ILC investments) provides resources to assist people with disability and their families understand and build personal safeguards. Capacity building approaches such as those used by Community Living British Columbia (Appendix 5) provide examples.

Recommendation 6: The Agency (through its approach to ILC investments) provides resources to assist people with disability to enhance their self advocacy skills.

Recommendation 7: ILC resources for capacity building and self advocacy, which relate to safeguards, should be sourced from organisations that do not provide core supports. User led organisations with experience and credibility with people with disability will provide the advantage of access to peer networks as a valuable strategy to strengthen self advocacy skills.

Reasonable and necessary support

In recognition that the planning process may be abridged at the surge phase of the NDIS, the IAC recommends:

Recommendation 8: That reasonable and necessary supports for the most vulnerable participants include planning safeguards such as :

a. plan and implement safeguardsb. self advocacy or empowerment trainingc. supports that reduce the risk of abuse and neglect, andd. risk enabled support

The IAC is aware that these options exist within the NDIA’s Support Catalogue and are consistent with the streaming approach in the Agency’s Service Delivery Operating Model (SDOM) which includes intensive and super intensive streams.

Recommendation 9: That Support Coordination is provided where a participant faces Work Health and Safety (WHS) challenges. Where the dispute extends beyond the role of a Support Coordinator, the participant must be assisted to link to formal advocacy support and corrective safeguards of disability complaints services. Reasonable and necessary support should be available to assist the participant to refresh their personal safeguards.

The IAC understands that the SDOM provides support co-ordination for the most vulnerable participants in the intensive and super intensive streams, in both pre planning and plan implementation. It also acknowledges that there is significant work to do to establish the support



coordination market, both in terms of availability and capacity. Thus this recommendation may take time to be fully realised.

It also understands that disability complaints services are currently not nationally consistent (i.e. there is comprehensive coverage in Victoria for disability supports but this does not extend to other service systems including health, mental health and education).

It is noted that at this stage systemic advocacy is not funded by the NDIA but rests with the Commonwealth as well as the states and territories.

Ensuring safeguards and the development of self advocacy are at the core of NDIS

Recommendation 10: That reference packages include safeguarding support for the most vulnerable (e.g. people with no effective informal support, in closed systems, etc). Safeguarding support would include, but not be limited to, capacity building for relationships and the provision of self advocacy training.

Recommendation 11: That the outcomes framework is strengthened to identify progress in relation to participants building relationships with people who are unpaid, as well as measuring progress in relation to the evaluation of their own personal safety.

Recommendation 12: That the capacity of Agency staff, outsourced planners and Local Area Coordinators (LAC) who work on the participant pathway is enhanced so that they have the knowledge and skill to understand safeguards, communicate authentically with participants on the topic and identify participants for whom additional support in planning and implementing safeguards is essential as part of reasonable and necessary support. This will include staff involved with access and triage, plan approvals, complaints, and quality and innovation.

Recommendation 13: That the Agency undertakes research on risk as perceived by people with disability to identify emerging trends in relation to the need for safeguards (data could be derived from participant’s planning for safeguards).

Facilitating market and sector development in risk enablement

Recommendation 14: That the Agency develops effective processes to manage risk that do not curtail choice and control.

Recommendation 15: That the Agency promotes relevant and proven UK processes that integrate personalisation and safeguarding including:

a. Tools to support decision making to enable risk



b. Processes that enable Agency staff, outsourced planners and LACs to share decision making with colleagues if there are concerns about risk.

Recommendation 16: That the Agency develops strategies to address current areas of market failure including:

a) Supporting the development of the market for ‘intermediary’ services including suppliers of high quality support co-ordinators who are skilled at designing supports that do not curtail the choice and control of people at higher risk of abuse and neglect yet keep them safe. The development of key intermediary services such as plan management is also critical to help enable participant mobility so participants feel empowered to leave a service provider if they are dissatisfied with the quality of service provision.

b) Training for Agency staff, outsourced planners and LACs in providing risk enabled support and guidance on how to understand abuse and indicators of abuse. This would involve imparting principles-based techniques to support decision-making and navigate the tension between for example, WHS and choice. Strategies to facilitate risk enabled support include:

i. the capacity to purchase training for staffii. pricing structures that recognise and value training, and

iii. mechanisms that enable staff and outsourced planners and LACs (who in the NDIS will often work alone) to share and discuss experiences where the issues are complex (such as the UK risk enablement panels).



Section 1 Context: a society fearful of risk

We live in a society where fear of litigation drives many decisions. The lives of people with disability are often restricted as a result of the fear that they may not have a good understanding of the choices they are considering and the risks involved and that services will be held responsible for their ‘unwise’ decisions. Service response to risk is often driven by fear of being blamed by families, being sued for negligence, attracting unwelcome media attention and suffering reputational damage.

Service providers are not the only ones experiencing fear. A 2012 paper commissioned by the Joseph Rowntree Foundation in the UK found that people with disability and service users identify fear of loss of independence as of greatest concern. Many in fact called for ‘the right to independent living for disabled people to be enshrined in law’ (Rowntree 2012, p. 3). The language of risk however is more often representative of government and service providers and not reflective of the concerns of service users.

As Skills for Care UK1 suggests, we need to learn to “work with risk”, to recognise that within the right circumstances, risk can be beneficial. Positive risk taking can be promoted using person centred planning and supported decision making with a sharing of power. This enables people to be supported and to share responsibility for increased independence, choice and control. Enhanced personal safeguards play an important role in enabling people to exercise choice and control and share responsibility for a good life lived safely.

There are many different approaches to, and definitions of, safeguards. The consultation paper on the Framework (Department of Social Services: 2015) defines safeguards as ‘actions designed to protect the rights of people to be safe from the risk of harm, abuse and neglect, while maximising the choice and control they have over their lives’.

Kendrick’s definition of developmental safeguards (2005) on the other hand indicates that the purpose of safeguards is ‘to produce socially desirable conditions for the inclusion and protection of people with a disability, supporting their valued status in the community and developing supports through family and intentional relationship building’.

The IAC will argue in this paper that a new approach is required that both enhances personal safeguards and refocuses risk.

There are many players in this space and the Agency is one of them. While it is not a policy agency it is well placed to lead via best practice. It also has role to play as a key influencer in the Sector and is a key partner in the National Disability Strategy (NDS). The NDIS is also an important stakeholder in bringing into effect the principles of the UN Convention on the Rights of Persons with Disabilities.

1 Skills for Care is the employer-led workforce development body for adult social care in England.



Section 2 The case for a different approach to risk

The case for a different approach to risk rests on the ideas that:

1. The current risk averse approach under state and territory systems undermines moves to choice and control.

Discussions about risk experienced by people with disability are complex. Service provider predisposition to avoid risk starts from a concern for clients and is reinforced by a concern for themselves. Recent inquiries into abuse in care demonstrate that concern for clients is not unfounded.2

The real debate between people with disability and service providers centres on the sources of risk and appropriate strategies to mitigate that risk. Perceptions of risk may also differ between the service provider and the person with disability. So while a service may prevent a young man from going fishing with a mature friend, the same provider may deem it appropriate for the same individual to live with strangers where there is little contact with people who are not paid to be there.

The relationship between the person with disability and their service provider is clearly central to the question about risk and safeguards. There is an unresolved question about conflict of interest in relation to whether a person’s provider of core supports should also provide support coordination or capacity building. This paper does not attempt to provide an answer to these questions and is a matter for further discussion.

Skills for Care in the UK argue that the question of risk raises serious questions for practitioners who are trying to balance empowerment with duty of care. The rights of adults to live independently and take risks needs to be weighed carefully against the likelihood of significant harm arising.

Studies by Taylor (2006) of a broad range of professionals involved in the long term care of older people showed they conceptualized risk and its management according to six paradigms ‘that seemed to be in a state of reciprocal tension’.

Table 1 Balancing expectations and risks

2 For example: Senate Community Affairs References Committee, Violence, abuse and neglect against people with disability in institutional and residential settings, including the gender and age related dimensions, and the particular situation of Aboriginal and Torres Strait Islander people with disability, and culturally and linguistically diverse people with disability, http://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/Violence_abuse_neglect , accessed (17 November 2015).



Paradigms Risk areas

1. Balancing benefits and harms Choice and empowerment

2. Identifying and meeting needs Need for services

3. Minimising situational hazards Health and safety

4. Protecting the individual and others Safeguarding

5. Accounting for resources and priorities Eligibility and resources

6. Wariness of lurking conflicts

Taylor argued that paradigms 1–5 describe obligations placed on practitioners through legislation, regulation or organisational constraint. Services must discover which one or ones they face in different situations. The final paradigm “wariness of lurking conflicts” identifies practitioners’ response to dealing with the blame culture.

Taylor argued that a service that adopts a “safety first” approach and that does not appropriately support people to have choice and control will be ‘a major inhibiting factor in achieving good outcomes for people’. In fact there is good reason to believe that ‘the most effective organisations are those with good systems in place to support positive approaches rather than defensive ones’ (Taylor, 2006). There are people with disabilities who are in very vulnerable situations and achieving the right balance in personal safeguards at the same time as moving organisations to support positive approaches will take some time.

2. The risk averse environment is built on an unnecessarily restrictive reading of state/territory legislation.

Carson and Bain (2008) argue that organisations that demonstrate good practice based on professional standards will be in the best position to respond successfully to legal challenge in relation to the paradigms noted above.

In working to change the understanding of risk in the UK, Skills for Care developed resources entitled Learning to live with risk (2011) providing guidance to services and practitioners on issues in law in relation to duty of care, human rights, health and safety and mental capacity including illustrative examples and guided services in how to avoid and prepare for legal challenge. They provided resources to assist services understand what is meant by ‘risk’ and what is involved in ‘risk decision making’ demonstrating the positive benefits of managing risk effectively in an organisation with a risk decision policy. This was part of their approach to support services to ‘learn to live with risk’.



3. UK evidence confirms that it is possible to put systems in place that integrate personalisation and safeguarding.

Working in partnership with key voices for and on behalf of people with disability, the UK Government developed systems that integrate personalisation and safeguarding. Australia can draw on this emerging evidence base.

A major UK Government Report, Independence, choice and risk: a guide to best practice in supported decision making (2007) developed a common set of principles (Appendix 1) as the basis for supporting people to make decisions about their own lives and manage any risks in relation to those choices. The lead premise was that ‘people have the right to lead their lives to the full as long as that does not stop others doing the same’. The report argued that:

…fear of supporting people to take reasonable risk in their daily lives can prevent them from doing good things that most people take for granted…By taking account of the benefits in terms of independence, wellbeing and choice, it should be possible for a person to have a support plan which enables them to manage identified risks and to live their lives in ways that suit them best (p. 3).

This report was complimented by a Social Care Policy Report (2010) Practical approaches to safeguarding and personalization that stressed that ‘well designed self directed support processes have checks and balances to improve risk management throughout’. Together the reports identify key elements of a system that increases choice and control while managing risk and helping people to be safe in their communities.

Elements of the system include:

a. Clarification of relevant legislation (duty of care, human rights, health and safety, mental capacity) with illustrative examples.

b. Opportunities that allow the individual to reflect on risks and how they are able to stay safe from harm. Models that treat people as ‘experts in their own lives’ are recommended as providing a more person centred, outcome focused mechanisms for determining the circumstances that face the individual. Issues of capacity are explored and decisions made about the assistance required.

c. Person centred pre-planning phase that enables the person to develop their plan including exploring risks and benefits and the level of risk the person wants in their life. A number of different tools have been developed to assist with decision making including:

i. a supported decision making tool co-designed in partnership with user led organisations, Paradigm and In-Control (Appendix 2) to manage the process of choice and control, assess the potential impact of any risks and provide documentation of actions and decisions



ii. risk matrix providing a simplified method to analyse riskiii. processes for dealing with conflict including family group conferences and mediation,

andiv. risk enablement panels (Appendix 3) that support staff to balance risk and choice.

d. Inspection processes focused on outcomes rather than minimum standards.

On the above system, the IAC notes that in relation to person centred planning (point C) this approach is being integrated into the LAC model and will cover 60% of participants. For the 60-80 per cent of participants who may access the Scheme through a LAC (not the most vulnerable), they will discuss risk as they define and develop their second plan.3

Similarly the 20 per cent in the intensive streams (the more vulnerable) will connect during the first plan period with a funded support eg: Support Coordinator or other intermediary. This is to ensure the participant is connected and supported at the time of first plan approval. The outsourced planner will at the time of preparing with participant’s second plan explore risk. They will work with the participant to establish appropriate risk taking so as to achieve capacity building.

A 2010 review of research and practice by Social Care Institute for Excellence demonstrated that ‘(t)he effective integration of safeguarding and personalisation contains the seeds for a transformation of care, not just the prevention of abuse and neglect’ (SCIE 2010, p. v). The report provides an evidence base to indicate what could work to promote risk enablement, independence and control while at the same time ensuring safety (see Appendix 4 for key messages).

Evidence based processes apply equally to people with challenging behaviours, where the “natural” if uninformed reaction could be to increase the severity of restrictions. Imposing constraints on a person with challenging behaviours will often inflame the behaviour and therefore exacerbate the risk and hence the use of best practice frameworks can both promote safety and reduce restriction. Such service responses require great skill.

Safeguards and risk in the NDIS context

The case for a different approach to personal safeguards and risk needs to be prosecuted in the NDIS context.

The current state/territory approach is built on restrictive practices, however the risk averse environment has not prevented the abuse. Many in fact argue that by reducing people’s opportunity to develop relationships with unpaid people in the community, a risk averse culture makes the possibility of harmful events more likely. Without a commitment and strategy to change the

3 Under SDOM the first plan will be a fast tracked transfer for participants entering the NDIS with a focus on covering core, capital and capacity building supports.



approach to risk, choice and control and the opportunity for people with disability to lead ordinary lives will be restricted.

The NDIS operates in a complex environment in relation to risk. Existing state and territory quality and safeguarding systems and the NDIA’s Terms of Business for Registered Support Providers are being used in the NDIS Trial. These will ultimately be replaced by the Framework. The role of the NDIS is to register providers based on state and territory accreditation and registration processes that involve compliance with state and territory quality assurance/management systems. The Framework has the challenging task of finding the right balance between choice and control and protection from harm. It recognises the importance of:

…developmental safeguards designed to make sure participants have the capabilities and supports to be able to choose quality supports and to build good and safe lives…These may include, for example, the capacity to advocate for themselves, or having family, friends and links with their community which help to ensure they are safe and their rights are protected (Department of Social Services 2015, p. 8).

Developmental safeguards are necessary but not sufficient to secure a changed approach to risk. Where the Framework lands in relation to preventative and corrective safeguards will be important. Unfortunately, there has been little consultation on systems to integrate personalisation and safeguarding and this leads to a concern that opportunities to enable people to share responsibility for a life lived safely will be missed.

Fostering developmental safeguards is very much in the domain of the NDIS. In an insurance approach, developmental safeguards that build the capacity of participants to advocate for themselves, build participants’ informal networks and enhance the capacity of families to guide their family member with disability to a good life filled with relationships, reduces the likelihood of harm and well as the reliance on paid support.

Examining Taylor’s expectations and risks in the NDIS context demonstrates the importance of the NDIS assisting people to balance benefits and harms. It also demonstrates a role in protecting the individual and others from harm and supporting individuals who are perceived as “situational hazards” to others.

Implications for the NDIS



At this time, the NDIS provides an opportunity to understand the tension between personalisation and risk and is best placed to make representations in an effort to ensure that the issue is taken forward in the Framework.

National discussion auspiced as part of the development of the Framework will have greatest chance of influencing the sector, especially in terms of:

a. promotion of risk enabling processes such as tools to analyse risk, make processes transparent, deal with conflict and support staff to balance risk and choice.

An opportunity also exists for the NDIA to coordinate research into the necessity of risk enablement in choice and control, while providing safeguards against abuse and neglect. The research should be comprehensive and involve participants, disability workers, managers, and feedback management systems.

Section 3 Assisting people with disability to enhance their personal safeguards

Section 3A Assisting people with disability to plan for their own safety

Assisting people with disability to plan for their own safety is core to an insurance model. Practice wisdom confirms that investment in building relationships with people who are not paid to be there contributes to the self efficacy of individuals and provides the most effective safeguard for a vulnerable person. It also reduces the risk of increased need as a result of harm.

The development of a person’s capacity takes time. A single seminar can raise awareness but as the IAC paper on Capacity building for people with disability (2015) argued, behaviour change generally requires:

a. the combination of a number of capacity building strategies over time in any one communityb. strengthening opportunities for participants in capacity building to be in a helping role,

strengthening their self perception as persons who make a contributionc. opportunities for people to “learn as they do”, to take initiative and have a small budget over

which they have control, andd. the use of empirically based best practices with a focus on the quality of relationships as well

as training, support and supervision of staff and volunteers.This means that investment is required over time and dividends in terms of a fuller safer life may take time to emerge.

Australian work to assist people with disability to plan for their own safety would do well to follow



the UK example of co-design, bringing together local citizens with experts in safeguarding and personalization to produce plans and strategies that work.

At the individual level, co-production of risk assessment and planning is essential.

Requirements of planning for safety and safeguards

At its best, planning for safety and safeguards requires two processes working together from different sides of the equation. It requires people with disability engaging with a skilled facilitation process underpinned by a deep understanding of the lives of people with disability and it requires systems and services with effective processes to manage risk.

The pre-planning, planning and plan implementation phases are crucial points for the Agency and outsourced partners to engage in safeguarding conversations with participants. In implementing a participant’s plan, providers, support workers and family and friends also play a role in designing and reviewing personal safeguards as situations change.

A skilled facilitation process underpinned by:

1. An understanding of vulnerability

An understanding of vulnerability is a critical step to reducing it. While vulnerability is part of being human, people with disability, generally experience heightened vulnerability because they are more likely to experience disadvantages in life, have fewer opportunities and are more likely to be severely affected by the vulnerability they experience.

Some vulnerability arises from the nature of the impairment or from systemic factors including poverty, unemployment inadequate housing, stigma, marginalisation, discrimination and pervasive power imbalances.

It can also arise from an individual’s exposure to an unresponsive system, 4 lack of control generally over day to day and larger life decisions,5 lack of a credible or reliable voice in the complaints system, having challenging behaviour, not having speech and having multiple impairments (Robinson 2014, p. 10). Many of these factors also contribute to a further vulnerability, i.e. the perceived risk of being a threat to others.

Table 2 identifies some general vulnerability experienced by people with disability that are not always identified. They are associated with a life not well lived and are so endemic that they sometimes become invisible. These are presented as a guide to open lines of inquiry. It is important

4 including exposure to a large number of casual and agency staff, lack of control over which staff provide intimate care service.5 including enforced co-residency, vacancy management policies, residence in institutional settings, isolation, lack of engagement with people who are there for you, capacity to recognise abuse (normative life experience).



however that planning around an individual must be highly specific, particularly in the pre-planning and plan implementation phases of the participant pathway. The plan itself needs to provide the necessary resources and flexibility. Vague generalisations are not helpful in designing personal safeguards.

Table 2: Vulnerability and safeguards

Vulnerability Risk Steps to reduce vulnerability Safeguard in action

Passive dependence

A life not well lived

Build self efficacy including

Empowerment

Support decision making

Autonomy

Self advocacy training and other capacity building opportunities

Support with decisions

Segregation Relationships

Belonging

Inclusion

Social and economic participation

Circle of support

Support for inclusion

Valued roles, Work

Living in the community

Feelings of worthlessness

Relationships

Belonging

Making a contribution

Engaged with interests that build passion

Helping others

Very few or no friends

Relationships

Belonging

Circle of support

Support for inclusion

Valued roles, Work

Living in the community

Being seen as a Curtailed Individualised person centred Behaviour support



Vulnerability Risk Steps to reduce vulnerability Safeguard in action

risk to others choice and control

supportSkilled ecological analysis of behaviour etc.

Manual handling training

2. An understanding of the dignity of risk

Research, particularly in relation to adolescents, demonstrates that risk taking can be empowering and important to a person’s development and independence (Ponton 1997, Le Breton 2004). The greatest learning often comes from making mistakes.

Dignity of risk comes from balancing the benefits that come with choice and control with the harms that may be associated with risk. This must take into account the fact that while a decision or action may involve risk, inaction may also involve risk.

It is important that safeguarding arrangements do not intentionally or unintentionally reduce people’s choice and control or impede the emergence of new ways people engage their support. Risk based safeguarding arrangements need to support people to make informed decisions about their choices and to be supported to take control of their supports and their lives.

3. An understanding of strategies to reduce and eliminate restrictive practices

One group of people who are especially vulnerable are those who have challenging behaviours. People with challenging behaviours can be perceived as being harmful to themselves or others and are at risk of being subjected to restrictive practices.

The National Framework for Reducing and Eliminating the Use of Restrictive Practices in the Disability Service Sector (DSS 2014) (National Framework) establishes a national approach to addressing the use and reduction of restrictive practices by disability service providers across a range of disability service sector settings, including institutional and community based care. The National Framework represents an interim step toward the reduction of the use of restrictive practices awaiting finalisation of the NDIS Quality and Safeguards Framework.

Staff, outsourced planners and LACS must understand what restrictive practices are and ensure that all planning, including behaviour support planning recognises the person’s human rights. 6

4. An understanding of the impact of existing regulations on choice and control6 This includes understanding the purpose of the person’s behaviour; paying attention to proactive skill building and environmental design to produce desirable behaviour change; providing decision supports to assist the person, their family, guardian and/or advocate to identify needs and goals and maximise participation in decision making; and using responses that are evidence based best practice.



Choice and control occurs within the boundaries of what is legal and does not cause harm to other persons or property. Where this universal dictum causes tension is where a feature of a person’s disability is perceived to potentially cause harm to others, for example where a person has behaviours of concern or wants assistance in transferring in ways that are perceived to put staff at risk.

5. An understanding of positive factors that reduce vulnerability

The IAC paper Reasonable and Necessary Support Across the Lifespan (2014) argues that an ordinary life is an important path to enabling people to feel and be free from harm because it involves a range of protective factors7 that enhance a person’s health and wellbeing. These factors provide important safeguards to protect individuals from harm and increase their self efficacy and ability to actively engage in the community.

Another approach to understanding the positive factors that reduce vulnerability is provided by Williams in his Model of Citizenhood (2013). This work explores how a person’s life chances are affected by their personal capital,8 their knowledge capital,9 their material capital10 and their social capital.11 Williams argues that strengthening a person’s capital strengthens their life chances and their path to citizenhood, described as ‘a situation in which a person is actively involved as a valued member of the local community contributing to community life (Williams 2014, p. 8). It follows that increased capital and citizenhood reduces a person’s vulnerability and risk of abuse because it increases resources at their disposal to control their life and be connected to the community.

Walker, Fulton and Bonyhady (2013) built on this work to explore the baseline of capital all citizens require to be well and safe. They argue that that one could reduce risk and increase capacity and outcomes by understanding a person’s capital, identifying gaps, measuring the risk given the gaps and providing focused investment to build capacity. These processes are seen as providing empowering safeguards that increase the chance for good things to happen.

6. The use of frameworks that encourage active planning around vulnerability

The self-directed framework of the NDIS, built on insurance principles, is well placed to integrate safeguarding with personalisation. Duffy and Gillespie (2009, p. 1) argue that personalisation is a critical path to enabling people to feel safe because personalisation:

7 Incorporating positive relationships, a sense of belonging, individual autonomy, active involvement in decision-making, active social and economic participation, using one’s unique strengths in ways that provide a challenge, and making a contribution.8 Personal capital refers to the person’s sense of their own potential, strengths, self worth, control and confidence.9 Knowledge capital is the person’s ability to access and use knowledge.10 Physical capital refers to a person’s access to personal material capital such as income, savings, property and to public material capital such as public transport, libraries, open spaces.11 Social capital refers to maintaining connections and growing new connections.



a. is focused on strengthening citizenship and using the most appropriate measures balancing freedom and control, to help people be safe

b. improves the current care management system by the use of self directed support which provides a comprehensive risk management system and focuses attention on preventing abuse by strengthening citizenship, and

c. enables people to move away from ineffective and institutional systems of control that create a dangerous illusion of safety but have proved inherently risky.

There are a number of frameworks that are very useful in planning around vulnerability.

Community Living, British Columbia (2011) has produced quality materials to assist people with disability and families to plan and develop safeguards using a step by step approach (Appendix 5).

Skills for Care has published a range of resources in the series Keep Risk Person Centred to assist staff to enable people who use social care to take the risks they choose.12

Walker, Fulton and Bonyhady provide a rating system to measure the level of citizen capital (low, fair, reasonable and significant) that focuses attention on nature of investments and safeguards required (Appendix 6).

7. Processes to design new and improved safeguards

Kendrick (2002) identifies a number of steps required in the design of intentional safeguards for vulnerable persons. Of particular importance is the recognition of the role of values and principles in guiding safeguarding decisions, the importance of identifying who has authority to make decisions and the ultimate value of relationships as a safeguarding strategy. Kendrick notes that agreement about informal support with family, friends, people at work and others may not be written but must be intentional.

Processes of designing safeguards must always be with the person and family, not for the person and family. It may result in the same decisions, but the relationships will be more empowering, sensitive and ethical. These are deeply personal issues and the nature of relationships matter. There is rarely an excuse for dominating a vulnerable person’s life or ignoring their rights in the name of well meaning safeguards. It is only in truly exceptional circumstances of immediate and grave risk where this is not the case.

Very often the person with disability and their family can design and implement their own safeguards but it may be helpful to provide a framework to encourage people to actively address the issues.

8. Processes to ensure safeguards are implemented and renewed

12 Skills for Care, Living with Risk, http://www.skillsforcare.org.uk/Skills/Living-with-risk/Living-with-risk.aspx (accessed 9 November 2015).


http://www.skillsforcare.org.uk/Skills/Living-with-risk/Living-with-risk.aspx


The development of safeguards is a dynamic process. As people’s lives change, so do their vulnerabilities. It may mean that they need new and different safeguards or that existing safeguards are no longer needed. Intentional safeguards are only valid if they continue to help an individual and their family to reduce specific vulnerabilities and therefore the risks associated with them.

It is also important to “safeguard the safeguarders”, that people who care deeply about a person with disability and take significant steps to provide informal support may be at risk of getting sick, burning out and getting into conflict with others. Due to this, person centred planning is suggested as a process to assist safeguarders to safeguard themselves.

Effective processes to manage risk

The processes of enabling risk and developing safeguards will be more positive and less threatening for all parties when there are standard processes to call upon when tensions arise. These include:

1. Process to resolve conflict

In the UK, when families are in conflict over life decisions for a family member with disability, Family Group Conferences (FGCs) are used. An FGC is a decision-making meeting to help the person and their family find their own solutions to problems. An independent coordinator who is not connected to the statutory authority, the services or any group in the family facilitates the FGC. The standard format includes:

a. Information sharing: where all the parties including professionals involved with the family share information (including any concerns) the family need to make a plan.

b. Private family time: during which non family members leave the room and the family has private time to talk about the issues of concern, make decisions and develop a plan of action that will ensure safety and wellbeing of the person. The FGC coordinator is on hand to provide additional information as required.

c. Agreement: where all parties return and make sure that everyone is clear about what has been agreed. The social worker will then agree what services and resources are needed to make the plan successful

d. A follow up review after three months is usual.

Mediation is also used as a tool to resolve conflict, especially where there are disagreements between, for example, a person/family and a service provider.

2. Processes to learn from mistakes

It may be worthwhile to draw practices from medical services where Morbidity and Mortality (M&M) conferences are used.



M&M conferences are usually peer reviews of mistakes occurring during the care of patients. The objectives of a well-run M&M conference are to learn from complications and errors, to modify behaviour and judgment based on previous experiences, and to prevent repetition of errors leading to complications. Conferences are non-punitive and focus on the goal of improved patient care. The proceedings are generally kept confidential by law. M&M conferences occur with regular frequency and highlight recent cases and identify areas of improvement for clinicians involved in the case. They are also important for identifying systems issues that affect patient care.

3. Processes to assist with risks to the individual that arise from Workplace Health and Safety (WHS) concerns

Perhaps the greatest challenge to choice and control for people with disability comes from WHS where people are seen as a threat to others.

Such concerns can pose a significant threat to the choice and control of an individual because they often relate to features arising from their impairment over which the person has little control or from behaviours that result from unresponsive and ineffective support.13 The right of people to live independent lives included in the community is always reduced where it is perceived that to do so may put others at risk.

Tensions of this nature are usually played out in services and are often the basis of dispute.

In NSW, National Disability Services (NDS) worked with Family and Community Services to establish Disability Safe14 in an effort to work through the inherent tensions between WHS law and disability support (e.g. treating a person’s home as a workplace and treating a person’s impairment as a workplace risk to be eliminated). Disability Safe aimed to reduce these tensions by educating and equipping providers to manage WHS risk well and by educating WorkCover about the nature of disability support. Linked to Disability Safe is an easy read website to assist people who are self managing their supports.15

A brief review of the Disability Safe website16 suggests that the issues that are canvassed do not reflect the real issues of contention.17 It therefore appears that there is no public source of

13 For example support provided by people who do not know the person well and are not able to understand the person’s communication, the person being forced into groups with people whose own challenges cause anxiety in the person.14 A project that offers a range of face to face and e-learning training for the Disability Sector.15 New South Wales Department of Family and Community Services, My Disability Support: Managing Safety, http://www.safetymds.nsw.gov.au (accessed 9 November 2015).16 Disability Safe, http://www.disabilitysafe.org.au (accessed 10 November 2015).17 For example, Disability Safe e-learning modules cover topics of trips and falls, bullying awareness for workers, infection control, food safety and the topic ‘Impairment in the disability sector’ is designed to raise awareness of the WHS hazards related to being impaired whilst working in the disability sector, focusing on drug and alcohol and fatigue as well as management actions requirements (emphasis added).


http://www.disabilitysafe.org.au/

http://www.safetymds.nsw.gov.au/

https://en.wikipedia.org/wiki/Medical_peer_review


information and guidance for dealing with WHS issues arising from the nature of a person’s disability or from the way in which the person wants to be assisted.

Process that would assist people with disability and service providers to negotiate WHS concerns include:

e. transparent risk assessment processes so that the person (and their advocate) can discuss the real issues at hand

f. dispute resolution processes, perhaps similar to the UK Risk enablement panels developed to support staff in balancing risk and choice via a process that shares decision making with colleagues if there are concerns about risk, and

g. support coordination or advocacy support for the person with disability.

Implications for the NDIS

The Agency and its outsourced partners have an important role to play in assisting people with disability to plan for their safety and safeguards. While one off information and seminars will be useful in raising awareness, the paper has outlined requirements to achieve behavioural change. NDIA staff, outsourced planners and LACs will play a central role in assisting people to build their personal safeguards. The IAC strongly encourages the Agency to consider how it can best equip those e working on the participant pathway (through training or other means) to best understand and communicate to people with disability the value of effective personal safeguards.

1. The Agency and its outsourced partners can assist people with disability to build their personal safeguards by:

a. Highlighting the importance of building safeguards in all information and resources. It is recommended that the notion of safeguards is coupled with the now familiar concepts of choice and control to begin to influence the mindset of all stakeholders.

b. Focusing on building safeguards as part of pre planning, planning and plan implementation.

c. Initiating specific pre planning seminars on developing personal safeguards. The aim would be to assist people to develop a safeguarding mentality.

d. Developing specific frameworks that assist people to plan their own safeguards.e. Identifying specific types of risks that people may face and developing packaged resources

and seminars to assist people to put safeguards in place, for example:i. safeguards for people who self manage (e.g. safeguards in hiring staff, having the

right insurance etc.)ii. safeguards for people moving into their own homes, and

iii. safeguards in taking a job.



2. Providing ILC resources to assist people with disability and their families to understand and build personal safeguards. Capacity building approaches including those used by Community Living British Columbia (appendix 5) provide examples.

3. Building the capacity of those working on the participant pathway to enable them to understand safeguards, communicate authentically with participants on the topic and identify participants for whom additional support in planning and implementing safeguards is necessary as part of reasonable and necessary support.

4. Providing reasonable and necessary support for planning safeguards for the most vulnerable participants. This would include support to:

a. plan and implement safeguardsb. participate in self advocacy or empowerment trainingc. design supports that reduce the risk of abuse and neglect, andd. negotiate enabling risk with service providers.

5. Providing a Support Coordinator where a participant faces WHS challenges. In the event that the dispute extends beyond the role of a Support Coordinator, the participant should be assisted to link to formal advocacy support and corrective safeguards of disability complaints services. Reasonable and necessary support should be available to assist the participant to refresh their personal safeguards.

Implications for preventative safeguards

The second requirement of planning for safeguards is the availability of effective processes to manage risk without thwarting choice and control. Under the Framework such processes would fit within the domain of Preventative Safeguards. However, it is concerning that the consultation paper on the Framework provides little insight as to processes to integrate personalisation with safeguarding.

Discussion and a planned approach is required to develop effective processes to manage risk that do not curtail choice and control. The baseline of these issues has been canvassed in section 2 of the paper, with additional attention to current areas of market failure including:

a) Supporting the development of the market for ‘intermediary’ services including suppliers of high quality support co-ordinators who are skilled at designing supports that do not curtail the choice and control of people at higher risk of abuse and neglect yet keep them safe . The development of key intermediary services such as plan management is also critical to help enable participant mobility so participants feel empowered to leave a service provider if they are unsatisfied with the quality of service provision.



b) training for Agency staff, outsourced planners and LACS in providing risk enabled support and guidance on how to understand abuse and indicators of abuse. Families and friends may also benefit from training on risk enablement and improving their understanding of abuse. This would involve imparting principles-based techniques to support decision-making and navigate the tension between for example, WHS and choice. Strategies to facilitate risk enabled support include:

i. the capacity to purchase training for staff ii. pricing structures that recognise and value training, and

iii. mechanisms that enable enable staff, outsourced planners and LACs (sometimes working alone in the NDIS) to share and discuss experiences where the issues are complex (such as the UK risk enablement panels).

Section 3B Assisting people with disability to identify and report services that are below standard as well as abuse and neglect

There has been significant discussion on the issue of abuse and neglect in the recent past and most players are currently grappling with serious responses. National Disability Services (NDS), as the peak service provider, has developed the Zero Tolerance Framework to alert services to the issues and assist with practical tools and resources to improve prevention, early intervention and responses to abuse, neglect and violence toward people with disability (Appendix 7). Women with Disabilities Victoria, the Public Advocate of Victoria, and the Domestic Violence Resource Centre are undertaking work that includes identifying outreach strategies to help people recognise and report poor services, abuse and neglect (Women with Disabilities Victoria et al., 2013). The Agency’s work to enhance personal safeguards will complement this work.

The Agency can make a significant contribution to the health and wellbeing of people with disability by assisting them to be stronger self advocates, to know how to respond when they are not treated appropriately and, into the future, is able to hold service providers to account. It is important however to acknowledge the challenge this presents. Many people with disability have internalised a sense of impotence, a lack of ability to influence their lives and their support. This is based in part on the power imbalance fundamental to most, if not all, of their relationships and results in apathy and an unwillingness of the person to struggle for more control and influence. Investment is worthwhile but will require support over time.

Developing personal safeguards

Research (Robinson, 2014) consistently indicates that when people with disability experience abuse or neglect the most potent assistance comes from having engaged supporters in their lives, having



relationships with a range of people in their community and being listened to when something goes wrong.

Listed below are two clear strategies to help people identify and report services that are below standard as well as report abuse and neglect. The first involves supporting people with disability to have relationships with people who are not paid to be there and the second relates to empowering people with disability to speak for themselves.

Facilitating relationships

Relationships are at the core of a good life. As Kushner reminds us:

We need to belong intimately to a few people who are permanent elements in our lives. A life without people, without people who belong to us, people who will be there for us, people who need us and who we need in return, may be very rich in other things but in human terms, it is no life at all. All the complicated structures we create are built on sand. Only our relationships to other people endure. (Kushner, 2009)

Many people with disability only have contact with people who are paid and an important outcome measure of the NDIS is that people will have an increased number of unpaid relationships. This is in recognition that relationships are pivotal to quality of life and being safe.

The goals of social and economic participation are at the heart of the NDIS and they provide the door to the development of relationships. Much has been written on processes to facilitate relationships. Worthy of mention however is the work of Stancliffe (2013) in relation to the transition of older workers from Australian Disability Enterprises (ADEs) to retirement.

The research demonstrated that sustained effort over a significant period of time was successful in enabling older workers who had led a sheltered life to join a range of community groups and experience the pleasures of belonging and engagement at a level they had never experienced before.

Strategies included giving people the opportunity to explore their interests, finding an ordinary community group that enabled people to pursue their interest and building and most importantly supporting natural networks within the local group to support the person.

The issue of the Agency’s responsibilities in relation to people who lack effective informal support is a topic being addressed by the IAC’s Intellectual Disability Reference Group. The IAC will await that advice prior to formulating recommendations on this issue.

Empowering people with disability to speak for themselves

Self advocacy, or empowering people to speak for themselves, has been a self evident truth since the mid 1980s. It was strengthened in law under the first Commonwealth States Disability Agreement in 1993 and implied or emphasised in all state and territory disability legislation in the 1990s. There has



been little effort however to genuinely empower people this is aligned with the very little systematic support for the training development and ongoing support for self advocacy.

In order to genuinely enable people with cognitive impairment to understand their rights, capacity building must include what the Victorian Advocacy League for Intellectuals with a Disability (VALID) refers to as the six powers of self advocacy, namely the power of: self expression; self confidence; self development; self determination, self reliance; and of self esteem. 18 It involves strategies that take place over time, are underpinned by a strong rights framework and include the capacity to address systemic issues that are identified. Some valuable resources in this area include work by VALID, Living Safer Sexual Lives (Johnson et al., p. 2001), the Tell Someone Program19 and resources by the Self Advocacy Resource Unit.20

Capacity building in self advocacy must recognise the limitations to self advocacy. Gant and Gant (2015) identify clear limits of self advocacy where the power imbalance between a vulnerable person and a decision maker means that self advocacy effort may in fact lead to increased discrimination, neglect and even abuse. VALID also recognises that self advocacy has limits, for example when the capacity of the individual is depleted or a power imbalance is too great to rely on the success of self advocacy.

The Victorian Inquiry into allegations of abuse in the disability sector (Victorian Ombudsman, June 2015) recognises that there are some people with disability for whom self advocacy training will have limited impact.

…the NDIS is a market driven model, rooted in the belief that people with disability are best placed to decide how their money should be spent on services to support them…however, for people with severe cognitive impairment and/or limited communication, it can present new barriers. For the most vulnerable, capacity will never improve; it is not a developmental challenge that will be rectified as people ‘become more confident and skilled consumers in the market.’ This fact must be acknowledged and provided for in the NDIS…

…It is not viable for advocacy to take a secondary position in the safeguards framework. I (the Victorian Ombudsman) consider advocacy to be key in a framework for Victorian people with disability who have no prospect of becoming empowered consumers and have no family or friends to voice their best interests. (Victorian Ombudsman, June 2015, p. 90)

This speaks to the auspice of support for self advocacy. 18 VALID, Self advocacy resources catalogue: strengthening client voice, http://www.valid.org.au/resources/posters/catalogue.pdf (accessed 10 November 2015).19 Tell Someone, you have the right to feel safe in your family and home, www.tellsomeone.org.au (accessed 10 November 2015).20 Self Advocacy Resource Unit, http://www.saru.net.au (accessed 16 November 2015).


http://www.saru.net.au/

http://www.tellsomeone.org.au/

http://www.valid.org.au/resources/posters/catalogue.pdf


The NDS Zero Tolerance Framework recognizes that services have an important role to play in empowering their clients to understand abuse, neglect, exploitation and violence. The Framework reinforces that people who are paid to assist vulnerable people have a responsibility to protect them and report abuse.

However, the responsibility to empower people with disability cannot be left to services alone. Not all services will genuinely seek to empower clients and the provision of empowerment training by an organisation in which abuse is also occurring will further disempower clients as they struggle with the difference between rhetoric and reality.

The Victorian Ombudsman’s report on the allegations of abuse in the disability sector argues that: …the role of advocacy is particularly important in the highly sensitive area of complaints about abuse, where people may be afraid to complain, or for those people who do not have the ability to communicate or make a complaint on their own behalf. Organisations that encourage self advocacy also play a part in this area. (Victorian Ombudsman, June 2015, p. 90)

Finally, training in self advocacy, especially for those most vulnerable is best undertaken with the support of an advocacy agency with relevant knowledge, skills, experience and minimal conflict of interest. Peer networks are important avenues for people with less vulnerability to learn self advocacy skills and for more vulnerable individuals to experience support in speaking out in day to day situations. Where evidence of conflict, abuse and neglect arises however, self advocacy needs to be connected to a reliable advocacy base to support the voice of the person with disability.

Implications for the National Disability Insurance Agency

Having a range of strategies to assist participants to identify and report inappropriate interaction and abuse is crucial.

The IAC has been advised that the Agency has a robust series of strategies to respond to these situations including direct and timely referral to the relevant authority. It has also developed a national complaints framework to improve customer service by managing and resolving complaints and feedback received about the Scheme and Agency. The framework promotes a ‘no wrong door’ approach to ensure effective access to complaints resolution for all users of the Scheme.

The Agency is also looking to establish the position of an independent investigator who will act independently of the Agency.

Capacity building in relationships

The Agency must devote significant investment to assist people with disability to develop relationships. Work in this area will lead to positive outcomes on multiple levels. Over time, developing relationships will lead to increased informal support, reducing the reliance on paid



support. This is a core focus of the work and expected outcomes from the engagement of LACs in the Scheme.

The IAC is aware that the Agency is partnering with VALID and the Office of the Public Advocate of Victoria to pilot an approach to support for decision making that is based on the recruitment and training of volunteers who will enter into relationship with people with cognitive impairment who are isolated and have no formal or informal support. It is anticipated that the project learnings will be important for going forward in this area.

In addition, the advice of the IAC’s Intellectual Disability Reference Group in relation to people who lack effective informal support will be critical to recommending a way forward on this issue.

Building capacity in people with disability to speak for themselves

The Agency can assist people to speak for themselves by supporting self advocacy efforts in:

1. Information, Linkages and Capacity Building

Efforts to build self advocacy skills, to assist people to identify and implement personal safeguards, and to support decision making are multiple sides of the one issue: that of empowering people with disability consistent with the UNCRPD. Nationally, there are currently very few resources devoted to this critical area of capacity building.

As such, the IAC recommends that priority is given to capacity building initiatives that support self advocacy, assist people to identify and implement personal safeguards and support people to have their voice heard in and make decisions.

Preference is proposed for information and capacity building sourced from organisations that have both a deep knowledge and skills in relation to self advocacy and safeguarding, as well as support structures that ensure that people continue to be supported in their self advocacy efforts. This would secure scope to assist people with disability to learn self advocacy skills, provide a forum in which people can practice those skills and have the certainty that systemic issues identified can be taken forward.

Peer networks can be a valuable strategy to strengthen self advocacy but their limitation in relation to people with significant cognitive impairment and people in the most vulnerable situations is recognised. The role of advocacy agencies is proposed in these situations. The IAC acknowledges that systemic advocacy is outside of the scope of the NDIA

2. Reasonable and necessary support

It is pleasing that the Agency’s Catalogue of Supports already has line items focused on increasing participant capacity in choice and control. This includes support for people to speak for themselves



through Transition Life stages – mentoring and peer support (8005) and Support Coordination for people who currently need assistance to negotiate services and systems.



BibliographyAustralian Government, Department of Social Services, (2015) Proposal for a National Disability Insurance Scheme Quality and Safeguarding Framework, Consultation paper

Australian Government, Department of Social Services, (2014) National-framework-for-reducing-and-eliminating-the-use-of-restrictive-practices-in-the-disability-service-sector, https://www.dss.gov.au/our-responsibilities/disability-and-carers/publications-articles/policy-research/national-framework-for-reducing-and-eliminating-the-use-of-restrictive-practices-in-the-disability-service-sector

Better Regulation Commission 2006, Risk, Responsibility, Regulation: Whose Risk Is It Anyway?, viewed 29 June 2015, http://www.scie-socialcareonline.org.uk/risk-responsibility-and-regulation-whose-risk-is-it-anyway/r/a11G00000017tVBIAY

Carr, S 2012, ‘Rethinking risk’, Think Local Act Personal, web log post, viewed 22 June 2015, http://www.thinklocalactpersonal.org.uk/Blog/article/?cid=9723

Carr, S, Enabling risk, ensuring safety: Self directed support and personal budget, viewed 29 June 2015, http://www.scie.org.uk/publications/reports/report36/

Carson, D., and Bain, A., (2008), Professional risk and working with people, Decision making in health, social care and criminal justice, Jessica Kingsley Publishers.

Chenoweth, L, Zero Tolerance NDS Roundtable, Griffith University, viewed 29 June 2015, www.nds.org.au/asset/view_document/979322763

Community Living British Columbia 2009, Belonging to One Another: Building Personal Support Networks, viewed 29 June 2015, http://www.communitylivingbc.ca/wp-content/uploads/Belonging-To-One-Another-final.pdf

Community Living British Columbia 2011, Addressing Personal Vulnerability Through Planning, viewed 29 June 2015, http://www.communitylivingbc.ca/wp-content/uploads/Addressing-Personal-Vulnerability-Through-Planning.pdf

Community Living British Columbia, Safeguards in Community, viewed 28 June 2015, http://www.communitylivingbc.ca/individuals-families/support-for-adults/safeguards/

Craig, D, ‘Playing it Too Safe – Have we Forfeited Our Liberty for the Sake of Occupational Health and Safety?’, viewed 29 June 2015, Interaction, vol. 26, no. 4, pp. 36-38

Cumbria City Council Learning Disability Services 2006, Positive Risk Taking Policy ‘Easy Read’ Version, viewed 15 June 2015, http://www.in-control.org.uk/resources/safeguarding/positive-risk-taking.aspx

Cumbria County Council 2008, Supporting Individual Choice and Control Through Positive Risk Taking, Cumbria County Council, viewed 15 June 2015, http://www.in-control.org.uk/resources/procedures,-guidelines-and-templates/cumbria-safeguarding-supporting-choice-and-control-procedure.aspx


http://www.in-control.org.uk/resources/procedures,-guidelines-and-templates/cumbria-safeguarding-supporting-choice-and-control-procedure.aspx

http://www.in-control.org.uk/resources/procedures,-guidelines-and-templates/cumbria-safeguarding-supporting-choice-and-control-procedure.aspx

http://www.in-control.org.uk/resources/safeguarding/positive-risk-taking.aspx

http://www.communitylivingbc.ca/individuals-families/support-for-adults/safeguards/

http://www.communitylivingbc.ca/wp-content/uploads/Addressing-Personal-Vulnerability-Through-Planning.pdf

http://www.communitylivingbc.ca/wp-content/uploads/Addressing-Personal-Vulnerability-Through-Planning.pdf

http://www.communitylivingbc.ca/wp-content/uploads/Belonging-To-One-Another-final.pdf

http://www.communitylivingbc.ca/wp-content/uploads/Belonging-To-One-Another-final.pdf

http://www.nds.org.au/asset/view_document/979322763

http://www.scie.org.uk/publications/reports/report36/

http://www.thinklocalactpersonal.org.uk/Blog/article/?cid=9723

http://www.scie-socialcareonline.org.uk/risk-responsibility-and-regulation-whose-risk-is-it-anyway/r/a11G00000017tVBIAY

http://www.scie-socialcareonline.org.uk/risk-responsibility-and-regulation-whose-risk-is-it-anyway/r/a11G00000017tVBIAY


Department of Health 2007, Independence, choice and risk: a guide to best practice in supported decision making, viewed 29 June 2015, http://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_074775.pdf

Duffy, S & Gillespie J, 2009, Personalisation and Safeguarding, viewed 29 June 2015, http://www.in-control.org.uk/media/52833/personalisation%20safeguarding%20discussion%20paper%20version%201.0.pdf

Faulkner, A 2012, The Right to Take Risks: Service Users’ Views of Risk in Adult Social Care, viewed 29 June 2015, http://www.jrf.org.uk/publications/service-users-views-risk-adult-social-care

Gant, D., and Gant, S., (2015), No to institutions, yes to valued lives, available from Adelaide People’s First [email protected]

Government of South Australia, 2013, Safeguarding People with Disability Overarching Policy, Department for Communities and Social Inclusion, South Australia, viewed 29 June 2015, http://webcache.googleusercontent.com/search?q=cache:e5gWvVLtju8J:www.dcsi.sa.gov.au/__data/assets/word_doc/0013/13423/safeguarding-people-with-disability-overarching-policy.doc+&cd=1&hl=en&ct=clnk&gl=au

In Control and Mencap 2011, Managing risks and safeguarding factsheet, viewed 15 June 2015, http://www.in-control.org.uk/media/16741/16.%20managing%20risks%20and%20safeguarding%202011%20v1.pdf

Kendrick, M J 2005, ‘Title: “Self Direction” in Services And The Emerging Safeguarding and Advocacy Challenges That May Arise’, A Discussion Paper for an Exploratory Study Session, Hartford, CT, viewed 29 June 2015, http://www.communitylivingbc.ca/what_we_do/innovation/pdf/Self_Direction_Advocacy.pdf

Kendrick, M J 2005, ‘Title: Intentional Safeguards For Older People’, A Presentation for the New Zealand Council of Christian Social Services Conference on: “Values: Cost Or Investment”, viewed 29 June 2015, http://www.communitylivingbc.ca/what_we_do/innovation/pdf/Self_Direction_Advocacy.pdf

Kendrick, M J 2014, ‘Beyond “Choice and Control”: Helpful Supports For Strengthening Personal and Situational Capacities’ , Interaction , vol. 27, no. 3, pp. 14-19

Kushner, H., in Community Living British Columbia 2009, Belonging to One Another: Building Personal Support Networks, op cit

Le Breton, D., (2004) Risk taking behaviours among young people, Bulletin de l’Academie Nationale de Medicine, 188(8) pp.1313-1321

Mitchell, W, Baxter, K & Glendinning, C 2012, Updated Review of Research on Risk and Adult Social Care in England, University of York, viewed 29 June 2015, http://php.york.ac.uk/inst/spru/pubs/2161/

National Disability Services, Zero Tolerance Framework, viewed 29 June 2015, http://www.nds.org.au/projects/article/194


http://www.nds.org.au/projects/article/194

http://php.york.ac.uk/inst/spru/pubs/2161/

http://www.communitylivingbc.ca/what_we_do/innovation/pdf/Self_Direction_Advocacy.pdf

http://www.communitylivingbc.ca/what_we_do/innovation/pdf/Self_Direction_Advocacy.pdf

http://www.in-control.org.uk/media/16741/16.%20managing%20risks%20and%20safeguarding%202011%20v1.pdf

http://www.in-control.org.uk/media/16741/16.%20managing%20risks%20and%20safeguarding%202011%20v1.pdf

http://webcache.googleusercontent.com/search?q=cache:e5gWvVLtju8J:www.dcsi.sa.gov.au/__data/assets/word_doc/0013/13423/safeguarding-people-with-disability-overarching-policy.doc+&cd=1&hl=en&ct=clnk&gl=au



mailto:[email protected]

http://www.jrf.org.uk/publications/service-users-views-risk-adult-social-care

http://www.in-control.org.uk/media/52833/personalisation%20safeguarding%20discussion%20paper%20version%201.0.pdf

http://www.in-control.org.uk/media/52833/personalisation%20safeguarding%20discussion%20paper%20version%201.0.pdf

http://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_074775.pdf

http://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_074775.pdf


National Disability Services 2014, Speaking Up About Safety, viewed 29 June 2015, www.nds.org.au/asset/view_document/979323399

National Framework for Reducing and Eliminating the Use of Restrictive Practices https://www.dss.gov.au/our-responsibilities/disability-and-carers/publications-articles/policy-research/national-framework-for-reducing-and-eliminating-the-use-of-restrictive-practices-in-the-disability-service-sector, viewed 5 August, 2015

Ponton, L., E., (1997) The romance of risk: why teenagers do the things they do. New York Basic Books

Redmond, C 2013, ACT Zero Tolerance Consultation Forum, Wooden Community Centre, viewed 15 June 2015, www.nds.org.au/asset/view_document/979322762

Robinson, S., (2012) Enabling and Protecting: Proactive approaches to addressing the abuse and neglect of children and young people with disability, https://scholar.google.com.au/citations?view_op=view_citation&hl=en&user=M6UeKJ0AAAAJ&citation_for_view=M6UeKJ0AAAAJ:r0BpntZqJG4C

Robinson, S, (2014) Preventing Harm: Can we shift our focus from responding to abuse to promoting personal safety? Southern Cross University, www.nds.org.au/asset/view_document/979322767

Skills for Care, (2011), Learning to live with risk: an introduction for service providers,

Skills for Care 2011, Keeping Risk Person-Centred, viewed 29 June 2015, http://www.skillsforcare.org.uk/Document-library/Skills/Living-with-risk/Keepingriskperson-centredintroduction.pdf

Skills for Care 2011, Keeping Risk Person –Centred: An Introduction for Service Providers in Adult Social Care, viewed 29 June 2015,

Skills for Care 2015, Common Core Principles to Support Self-Care, Skills for Care, Leeds, viewed 15 June 2015, http://www.skillsforcare.org.uk/Document-library/Skills/Self-care/Commoncoreprinciples.pdf

Social Care Institute for Excellence 2009, Self directed support and personal budgets: enabling risk, ensuring safety, viewed 15 June 2015, http://www.scie.org.uk/publications/reports/report36/

Social Care Institute for Excellence, SCIE Report 36 (2010) Enabling risk, ensuring safety: self directed support and personal budgets’

Social Care Institute for Excellence, SCIE Report 37 (2011), User involvement in adult safeguarding

Social Care Institute for Excellence 2012, Safeguarding Adults: mediation and family group conferences: Working with Domestic Abuse, viewed 29 June 2015, http://www.scie.org.uk/publications/mediation/domesticabuse/

Social Care Institute for Excellence 2012, Safeguarding Adults: mediation and family group conferences: Information for people who use our services, viewed 29 June 2015, http://www.scie.org.uk/publications/mediation/files/informationforpeoplewhouseservices.pdf?res=true


http://www.scie.org.uk/publications/mediation/files/informationforpeoplewhouseservices.pdf?res=true


http://www.skillsforcare.org.uk/Document-library/Skills/Self-care/Commoncoreprinciples.pdf


https://scholar.google.com.au/citations?view_op=view_citation&hl=en&user=M6UeKJ0AAAAJ&citation_for_view=M6UeKJ0AAAAJ:r0BpntZqJG4C

https://scholar.google.com.au/citations?view_op=view_citation&hl=en&user=M6UeKJ0AAAAJ&citation_for_view=M6UeKJ0AAAAJ:r0BpntZqJG4C


https://www.dss.gov.au/our-responsibilities/disability-and-carers/publications-articles/policy-research/national-framework-for-reducing-and-eliminating-the-use-of-restrictive-practices-in-the-disability-service-sector





Social Care Institute for Excellence 2012, Safeguarding Adults: mediation and family group conferences: Enabling Participation, viewed 29 June 2015, http://www.scie.org.uk/publications/mediation/participation/

Social Care Institute for Excellence, 2014, Adults’ Services Report 47: User Involvement in Adult Safeguarding, viewed 29 June 2015, http://www.scie.org.uk/publications/reports/report47/

Social Care Institute for Excellence, 2015, Safeguarding adults: looking out for each other to prevent abuse, online video, viewed 14 July 2015, http://www.scie.org.uk/socialcaretv/video-player.asp?guid=D2966889-F552-4464-96D3-C22EBCF2A5ED

Social Care Institute for Excellence, 2015, Safeguarding adults: an independent life after abuse, online video, viewed 14 July 2015, http://www.scie.org.uk/socialcaretv/video-player.asp?guid=7ECBEAB2-87EE-476C-BF40-38D8F5AA859D

Social Care Institute for Excellence, Adult safeguarding: Self neglect , viewed 14 July 2015, http://www.scie.org.uk/adults/safeguarding/selfneglect/index.asp

Social Care Institute for Excellence, 2015, Safeguarding adults: helping people to protect themselves from crime, online video, viewed 14 July 2015, http://www.scie.org.uk/socialcaretv/video-player.asp?guid=a9255313-6c9a-4adb-9464-cdbfd1e47e56

Social Care Institute for Excellence, 2015, Safeguarding adults: teaching people to protect themselves, online video, viewed 14 July 2015, http://www.scie.org.uk/socialcaretv/video-player.asp?guid=92458A9C-F89F-4DB1-BDEA-E25698D01A18

Social Care Institute for Excellence, Adult Safeguarding, viewed 26 June 2015, http://www.scie.org.uk/adults/safeguarding/

Social Care Policy, 2010, Practical approaches to safeguarding and personalisation, Department of Health, viewed 29 June 2015, http://www.hft.org.uk/Documents/FCSS/safeguarding_personalisation.pdf

Stancliffe, R., (2013) “Transition to retirement: A guide to inclusive practice ” http://www.afford.com.au/employment/transition-to-retirement-sp-829

Substance Abuse and Mental Health Services Administration, Trauma Informed Approach and Trauma Specific Interventions, viewed 29 June 2015, http://www.samhsa.gov/nctic/trauma-interventions

Taylor, B., (2006) Risk management paradigms in health and social services for professional decision making on the long term care of older people, British Journal of Social Work, 36, pp1411-1429

Think Local Act Personal, Risk enablement feeling in control and safe, viewed 22 June 2015, http://www.thinklocalactpersonal.org.uk/Browse/mir/mirSearch/organisationOverview/projectCycle/?obj=dsp_priorities&cycleID=154&orderKey=3

Valid Inc., Self Advocacy Resources Catalogue, viewed 15 June 2015, http://www.valid.org.au/resources/posters/catalogue.pdf


http://www.valid.org.au/resources/posters/catalogue.pdf

http://www.thinklocalactpersonal.org.uk/Browse/mir/mirSearch/organisationOverview/projectCycle/?obj=dsp_priorities&cycleID=154&orderKey=3

http://www.thinklocalactpersonal.org.uk/Browse/mir/mirSearch/organisationOverview/projectCycle/?obj=dsp_priorities&cycleID=154&orderKey=3

http://www.samhsa.gov/nctic/trauma-interventions

http://www.hft.org.uk/Documents/FCSS/safeguarding_personalisation.pdf

http://www.scie.org.uk/adults/safeguarding/

http://www.scie.org.uk/socialcaretv/video-player.asp?guid=92458A9C-F89F-4DB1-BDEA-E25698D01A18

http://www.scie.org.uk/socialcaretv/video-player.asp?guid=92458A9C-F89F-4DB1-BDEA-E25698D01A18

http://www.scie.org.uk/socialcaretv/video-player.asp?guid=a9255313-6c9a-4adb-9464-cdbfd1e47e56

http://www.scie.org.uk/socialcaretv/video-player.asp?guid=a9255313-6c9a-4adb-9464-cdbfd1e47e56

http://www.scie.org.uk/adults/safeguarding/selfneglect/index.asp

http://www.scie.org.uk/socialcaretv/video-player.asp?guid=7ECBEAB2-87EE-476C-BF40-38D8F5AA859D

http://www.scie.org.uk/socialcaretv/video-player.asp?guid=7ECBEAB2-87EE-476C-BF40-38D8F5AA859D


http://www.scie.org.uk/publications/mediation/participation/


Victorian Ombudsman 2015, Reporting and investigation of allegations of abuse in the disability sector: Phase 1 – the effectiveness of statutory oversight, viewed 29 June 2015, https://ombudsman.vic.gov.au/VO/media/VO/Parliamentary%20Reports/HTML/web_VO-Report_Disability-P1.html

Walker, M, Fulton, K & Bonyhady, B, 2013. A Personalised Approach to Safeguards in the NDIS, viewed 29 June 2015, http://www.centreforwelfarereform.org/uploads/attachment/385/a-personalised-approach-to-safeguards-in-the-ndis.pdf

Warwickshire Country Council, Keeping Safe Taskforce, viewed 26 June 2015, http://www.warwickshire.gov.uk/keepingsafe

Williams, R., (2013) Model of Citizenhood Support, Purple Orange, 2nd edition

Wiseman, D 2011. A ‘four nations’ perspective on rights, responsibilities, risk and regulation in adult social care, viewed 29 June 2015, http://www.jrf.org.uk/sites/files/jrf/social-care-risk-regulation-full.pdf

Women with Disabilities Victoria, Office of the Public Advocate and Domestic Violence Resource Centre Victoria, (2013) Voices Against Violence: Paper 2: Current Issues in Understanding and Responding to Violence Against Women with Disabilities http://www.wdv.org.au/documents/Voices%20Against%20Violence%20Paper%20Two%20Current%20Issues%20in%20Understanding%20and%20Responding%20to%20Violence%20Against%20Women%20with%20Disabilitites%20(PDF%201.1MB).pdf

Work Focus Australia, National Disability Abuse and Neglect Hotline factsheet, Work Focus Australia, viewed 15 June 2015, http://www.disabilityhotline.net.au/linkservid/534C8DBC-E8E8-9A65-ADE19A040C411A21/showMeta/0/


http://www.disabilityhotline.net.au/linkservid/534C8DBC-E8E8-9A65-ADE19A040C411A21/showMeta/0/

http://www.disabilityhotline.net.au/linkservid/534C8DBC-E8E8-9A65-ADE19A040C411A21/showMeta/0/

http://www.wdv.org.au/documents/Voices%20Against%20Violence%20Paper%20Two%20Current%20Issues%20in%20Understanding%20and%20Responding%20to%20Violence%20Against%20Women%20with%20Disabilitites%20(PDF%201.1MB).pdf



http://www.jrf.org.uk/sites/files/jrf/social-care-risk-regulation-full.pdf

http://www.warwickshire.gov.uk/keepingsafe

http://www.centreforwelfarereform.org/uploads/attachment/385/a-personalised-approach-to-safeguards-in-the-ndis.pdf

http://www.centreforwelfarereform.org/uploads/attachment/385/a-personalised-approach-to-safeguards-in-the-ndis.pdf

https://ombudsman.vic.gov.au/VO/media/VO/Parliamentary%20Reports/HTML/web_VO-Report_Disability-P1.html

https://ombudsman.vic.gov.au/VO/media/VO/Parliamentary%20Reports/HTML/web_VO-Report_Disability-P1.html


Appendix 1 Common core principles to support self-care From Department of Health 2007, Independence, choice and risk: a guide to best practice in supported decision-making.

Principle 1 Person centred practice that engages, supports, encourages and facilitates involvement and helps individuals to make decisions that are right for them

Principle 2 Effective communication enables individuals to identify their strengths, assess their needs and develop and gain confidence to self care

Principle 3 For individuals to make well informed decisions about their self care, they must have access to appropriate information and understand the range of options open to them

Principle 4 Developing skills and confidence in self care requires access to a range of learning and developmental opportunities, formal and informal

Principle 5 New technology is an important aspect of enabling people to self care

Principle 6 Individuals are enabled to access support networks and participate in planning, development and evaluation of services

Principle 7 Risk taking is a normal part of everyday life so supported risk management and risk taking is an important element of maximising independence and choice



Appendix 2 Supported decision-making tool

(from Department of Health 2007, Independence, choice and risk: a guide to best practice in supported decision making)

This tool is designed to guide and record the discussion when a person’s choices involve an element of risk. It will be particularly helpful to a person with complex needs or if someone wants to undertake activities that appear particularly risky. It can be amended to suit different user groups.

It can be completed by the practitioner with the person or by the person themselves with any necessary support. It is important that, in discussing any risk issues, the person has as much information as possible (in an appropriate form) and fully appreciates and genuinely understands any consequences, to enable them to make their best decisions.

The tool could be adapted for use within existing needs assessment and care planning processes. It also has potential application for any organisation or individual providing advice and support services to people who are self-funders and ineligible for support from their local councils.

Using the tool

Practitioners need to:

Ensure that the person has the right support to express their wishes and aspirations Assume capacity unless otherwise proven Consider the physical and mental health of the person and any specialist services they need or are

already receiving

Issues for the practitioner to consider

When using the tool with the individual, consider carefully the following aspects of the person’s life and wishes:

• dignity• diversity, race and culture, gender, sexual orientation, age• religious and spiritual needs• personal strengths• ability/willingness to be supported to self care• opportunities to learn new skills• support networks• environment – can it be improved by means of specialist equipment or assistive technology?• information needs• communication needs – tool can be adapted (braille, photographs, simplified language)



• ability to identify own risks• ability to find solutions• least restrictive options• social isolation, inclusion, exclusion• quality of life outcomes and the risk to independence of ‘not supporting choice’

The tool

1. What is important to you in your life?2. What is working well?3. What isn’t working so well?4. What could make it better?5. What things are difficult for you?6. Describe how they affect you living your life7. What would make things better for you?8. What is stopping you from doing what you want to do?9. Do you think there are any risks ?10. Could things be done in a different way, which might reduce the risks?11. Would you do things differently?12. Is the risk present wherever you live?13. What do you need to do?14. What do staff/organisation need to change?15. What could family/carers do?16. Who is important to you?17. What do people important to you think?18. Are there any differences of opinion between you and the people you said are important to you?19. What would help to resolve this?20. Who might be able to help?21. What could we do (practitioner) to support you?

Agreed next steps – who will do what

How would you like your care plan to be changed to meet your outcomes?

Record of any disagreements between people involved

Date agreed to review how you are managing

Signature

Signature



Appendix 3: Risk enablement panel

In Control www.in-control.org.uk

Template terms of reference and procedure for use by local authorities implementing Self-Directed SupportThis is a template document designed to be adapted for local use by local authorities, provider agencies and any other organisation which works to support individuals who use care and support services.“The governing principle behind good approaches to risk is that people have the right to live their lives to the full as long as that does not stop others from doing the same.” (Independence, choice and risk: a guide to best practice in supported decision making– DH, May 2007.)

http://www.in-control.org.uk/media/7890/risk%20enablement%20panel.pdf


http://www.in-control.org.uk/media/7890/risk%20enablement%20panel.pdf


ContextThe responsibility for arranging a Risk Enablement Panel sits with the Safeguarding Adults Team. It will convene only when there are complex risks identified during the normal process of signing off an individual’sSupport Plan, which cannot be resolved through the usual channels of decision making within the relevant team, and where there is a clear difference in opinion relating to the proposed Support Plan.

AimThe aim of the Risk Enablement Panel will be to provide a forum for full and frank discussion and resolution of serious concerns relating to the management of identified risks highlighted in an individual’s Support Plan. When there is a significant or perceived substantial risk, it will provide a forum for a shared decision making process where the outcome will lead to the Support Plan being agreed as ensuring that the individual will be enabled by the support described to remain healthy, safe and well, and where the local authority will be seen to have discharged its legal duty of care.

Objectives1. To ensure a consistent approach is taken to considering complex risk decision making,

where the risk to independence or safety is balanced with the risk of not supporting an individual’s choices.

2. A shared responsibility when dealing with complex risks between the local authority, its clients, their carers, providers and staff.

3. To ensure there is a written record of discussions and decisions.

Nature of responsibilitiesThe panel will not replace or act in cases where Adult Protection / Safeguarding Procedures or Multi-Agency Protection Panel Arrangements (MAPPA) take precedence.The panel will support individuals to consider the potential consequences of any decisions that are deemed to carry a significant element of risk, and to offer advice, guidance and support in weighing up these consequences to arrive at an informed decision. If an agreement is made, the panel will then ‘sign off’ the individual’s Support Plan.All discussions and any agreed actions arising from the meeting must be documented in the individual Support Plan and in the panel records.Any person presenting a Support Plan to the Risk Enablement Panel must ensure that all relevant parties are informed of the impending panel discussion, in agreement with the individual. The outcome should be communicated to all parties within three working days of the panel.

MembershipThe Risk Enablement panel should consist of:

The individual and/or their advocate. Any carers requested by the individual to represent them, or who the panel consider to be

affected directly by the decision being considered. An independent chairperson, ideally drawn from the local Safeguarding Adults Board. The local authority Safeguarding Adults lead.



The social worker / care manager responsible for the case and/or their team manager. Any relevant multi-disciplinary staff, such as a social worker / care manager or

health professional. Any specialists involved such as consultant psychiatrist or criminal justice advisor. Note taker. A contingency list of staff that can deputise for primary panel members.

Frequency and location of meetingsThe Risk Enablement Panel is a mechanism of last resort in individual cases, and as such it will not meet unless required.

The meetings will take place at a time and in a venue which is acceptable and accessible to enable the individual and/or their carers to fully and meaningfully participate.

How a panel is requestedA referral to the Risk Enablement Panel can be made by anyone involved in the decision making process in relation to Support Plan sign off, and can be made at any stage in this process. However, the panel will only be convened where all other attempts to fully discuss the issues of concern and reach a mutually acceptable agreement with the individual and/or their representative have been exhausted.

The referral to the panel can be made by any concerned party involved in the support planning process. It is important that individuals and their representatives are made aware of the panel’s existence and role when being given information about the support planning process.

The panel will convene within seven days of the referral being submitted to the Safeguarding Adults team.

At the meetingThe chairperson will explain to all present the nature of the disagreement and summarise all steps taken so far to resolve the issue. They will then invite each relevant party, starting with the individual or their representative, to present their view of the situation along with their suggested resolution.An open discussion will then be facilitated by the chairperson to enable members of the panel to fully explore and understand the issues and for potential consequences of any decision to be identified and explained.

The chair will then invite the individual and/or their representative to describe their preferred outcome, followed by the representative of the local authority social services team.

The chair will then broker an agreement and describe any decision taken, taking care to substantiate any such decisions in terms of the requirements of theMental Capacity Act and Human Rights Act, as well as the local authority’s duty of care. Any consequences of the individual choosing not to abide by the decision taken must be clearly communicated at the meeting, recorded fully and communicated after the meeting to the individual and/or their representative as appropriate (see below).



After the panel has metThe decision of the panel will be communicated to all parties within three working days of the meeting, in writing, or using an appropriate communication method for the individual service user. NOTE that this may mean someone is required to visit to explain the panel’s decision in person if this is the only way to ensure the decision is adequately communicated.

The individual and/or their representative must be made aware at this stage of the consequences of not complying with any decision which the panel has made.

The individual and/or their representative must also be made aware of their right to complain if they are dissatisfied with the decision.

ThanksOur thanks to those who helped produce this document, including representatives from the following local authorities: Lancashire, Cumbria, York, Northumberland, Northamptonshire, Oldham, Cambridgeshire, Hackney and Newcastle. Our thanks also to Michael Mandelstam, who provided useful advice on the legal aspects of the contents.



Appendix 4 What could work to promote risk enablement, independence and control while at the same time ensuring safety?From Social Care Institute for Excellence, SCIE Report 36 (2010) Enabling risk, ensuring safety: self directed support and personal budgets’

The report provides an evidence base to indicate what could work to promote risk enablement, independence and control while at the same time ensuring safety. Key messages include

For organisational transformation and culture change

The promotion of choice and control implies the need for changes in the way risk is understood, managed and negotiated with people using services. It implies the need for organisational change to respond to new person-centred ways of working.

Risk enablement should become an integral part of the transformation of adult social care into a system that puts the person in control. It cannot be a ‘bolt-on’ solution to existing systems that do not have the person at the centre.

Personal budgets have sometimes been misunderstood, leading to the idea that people will be left unsupported in organising their own services and will have to take full responsibility for managing risk alone. Practitioners may not be confident about sharing responsibility for risk if their organisation does not have a positive risk enablement culture and policies.

A supportive system is one that clearly incorporates self-directed support with safeguarding policy and practice, abuse detection and prevention. Risk enablement and safeguarding training for staff, people using services, carers and families is important.

For frontline practice

There is evidence that social work skills and relationship-based working with the person using the service are required, both to promote risk enablement as part of self-directed support and to detect and prevent abuse as part of safeguarding.

Practitioners need to be supported by local authorities to incorporate safeguarding and risk enablement in their relationship-based, person centred working. Good quality, consistent and trusted relationships and good communication are particularly important for self-directed support and personal budget schemes.

Research evidence has shown that corporate risk approaches can result in frontline practitioners becoming overly concerned with protecting organisations from fraud when administering direct payments. This reduces their capacity to identify safeguarding issues and enable positive risk taking with people who use services.

Emerging research suggests that a rebalancing of social work resources towards frontline activity with people using services, their carers and families could enhance overall organisational risk management and safeguarding.



‘Positive risk taking’ or ‘risk enablement’ is central to the philosophy behind self-directed support and personal budgets, but social care practitioners can be concerned about how to both empower the individual and fulfill their duty of care. However, research shows that risk management dilemmas are an inherent part of social work practice and existed well before the recent reforms associated with personalisation were clear.

For people who use services, their carers and families

With the support of frontline staff, people using services should be enabled to define their own risks and empowered to recognise, identify and report abuse, neglect and safeguarding issues. Communication which supports risk enablement and safeguarding should be led by the language and understanding of the person using the service. This approach should be a core part of self-directed support including assessment and regular review of outcomes.

Informed choice is vital for risk enablement. Personal budget holders need access to information and advice about safeguarding, employment, legal aspects, reporting, peer support and accredited people and organisations.

The views of people who use services are largely absent in the literature and there are very few research studies and evaluations of risk management systems and interventions. More research on how practitioners ‘do’ risk is also needed.

Lessons from emerging practice

As self-directed support and personal budgets are being implemented, innovative practice is being developed showing risk enablement while ensuring safety. Risk enablement practice has not yet been evaluated, but still shows approaches to promoting independence, choice and control and enabling positive risk taking while maintaining the balance with duty of care and ensuring people stay safe.

All risk enablement approaches should be person-centred and focus on the perspectives and understandings of the person using the service (and their carers and family, where appropriate). People may be at risk if they become lost in a complex, over technical ‘risk management’ process which does not listen to their voices or account for their individual situations: ‘Person-centred planning approaches identify what is important to a person from his or her own perspective and find appropriate solutions. We commend person-centred approaches for everyone’ (DH, 2007a, p 2).

Social workers and frontline social care practitioners need to be supported by organisational cultures and systems. These should allow them to spend time with the individual and to focus on their safety concerns and achieving their chosen outcomes rather than going through unnecessary auditing processes. Duty of care means supporting an individual to achieve their chosen outcomes while staying safe.

Personalisation and adult safeguarding practice and policy need to be more closely aligned and inform each other. They should be underpinned by the principle of person-centred practice and the promotion of choice, control, independent living, autonomy and staying safe. A shared adult ‘personalisation and safeguarding framework’ can support this. This should be developed by all



those involved, including adult safeguarding leads and stakeholders, people who use services and their organisations, social workers and personalisation leads.

Local authorities and social care providers need to foster a culture of positive risk taking which will support frontline practitioners to work in a risk-enabling way with the person using the service.

Social work skills are particularly important for risk enablement and safeguarding in self-directed support. These include helping people assess, manage and take appropriate risks, and as local authorities move away from excessively risk-averse policies and procedures, assisting with more person-centred ways of managing risk’ (Tyson et al, 2010, p 69).

Positive risk taking and safeguarding needs to be an integral part of the self directed support process, including support planning and review and decisions on how best to manage a personal budget. Risk enablement panels are beginning to emerge as a way of helping with challenging or complex decisions that may arise as part of signing off a person’s support plan. They show how local authorities implement self-directed support and personal budgets in ways that empower individuals while ensuring risks are managed and responsibility is clear. The emphasis is on shared decision-making that supports person-centred frontline practice and improves practitioner confidence. Duty of care decisions can be made in a shared and informed way, with transparent, shared responsibility.



Appendix 5 A guide to identifying and incorporating intentional safeguards

(from Community Living British Columbia 2011, Addressing Personal Vulnerability Through Planning, viewed 29 June 2015)

Developing Your Safeguarding Mentality

Read and talk with others about safeguards.

Learn and use the language of safeguards. Understand words such as risk, vulnerability, harm and opportunity.

Think about situations when you or someone you care about has been harmed or at risk of being harmed. What actions could have prevented that?

Pay attention to how people are treated in your community, and think about the experience from their perspective.

Share your observations and what you have learned with others.

Think about jobs and volunteering and the safeguards that may be needed.

Applying a Safeguarding Lens to a Plan

If this is a person’s first plan, talk about vulnerabilities in different areas of a person’s life: o Health and well-being o Living arrangements o Work or school o Financial and legal situation o Self-determination o Social inclusion o Personal identity and communication style

If the person already has a plan, think about vulnerabilities related to the goals or activities identified in it.

Look at other supporting plans such as a positive behaviour support plan, health care plan or employment plan.

Talk about your concerns. Remember these are different for everyone. Don’t prejudge a goal just because a person’s unique vulnerabilities may create a risk

associated with the goal. Be open to the possibility of safeguards that can address the vulnerability.



Be patient. This can be a very personal and emotional conversation that brings up deep fears. The answers can be complex and contradictory. Be prepared to talk about this more than once.

Risks worth taking

Life and living in community is about making your own choices and decisions. Sometimes these choices involve risk-taking. It is an important aspect of everyone’s life to have the opportunity to decide on taking a risk if it is worth it.

Some examples of risks that might be worth taking for one person, and not for another person:

o Risking rejection to make a new friend.

o Applying for a job that involves travelling to a different part of town.

o Making your own lunch in spite of possible risks involved in using the kitchen.

How to Better Understand Risks and the Dignity of Risk Taking

Talk about why the person is having or might have difficulty with each goal in their plan. Explore the reasons and figure out which ones have to do with their unique

vulnerabilities. Make the link between a specific vulnerability and risks associated with it. Pay closer attention when the same vulnerability comes up related to more than one goal

or need. For example, communication style might be a vulnerability at work and in social situations.

Describe the risk. How is the risk unique to the person and situation. Talk about how family relationships, cultural preferences, and individual history affect the risks.

Describe the impacts of the risk for the individual and others. Would taking the risk help a person develop their independence – which might actually reduce their vulnerability?

Avoid vague generalizations like poverty, unemployment or risk of abuse. These are too general to be helpful in designing personal safeguards.

Prioritize the list of risks. Top priority should be the ones likely to cause greatest or immediate harm; and the ones associated with the goals that are most important to the person.

Ways to reduce risk

Reduce the impact of the vulnerability

Reduce the risk of having money stolen by a person learning to do their own banking and getting to know the people at the local bank or credit union.



Reduce the risk of medication errors by arranging for the pharmacy to pre-package medications for each medication time.

Reduce the risk of a person not being able to communicate their needs and feelings by accessing communication equipment.

Identify ways to build competence in new skill areas.

Promote more community involvement with people with disabilities.

Strengthen positive factors that offset vulnerability

o Reveal the gifts and talents that a person brings to a relationship.

o Create a circle of friends or expand a personal support network.

o Join a group where others may have common challenges and interests.

Assessing existing safeguards

Make a list of existing safeguards. Focus on the ones that address the risks on your list. Consider:

o Personal supports and professional supports o Formal and informal safeguards o Community and personal safeguards Assess how these existing safeguards are working: o Are they effective for the person? o Are they clearly linked to specific risks? o Are they restricting the person from reaching their dreams or having the same life

experiences as other citizens? o What does the experience tell you about approaches that work well with this individual? Decide together how to make them more effective and write it down.

Designing new safeguards

If this is the first person-centred plan, or if the current plan has no safeguards identified, move on to designing needed safeguards.

Start with the areas of the person’s life with the most desirable opportunities and the greatest risk of immediate harm.

Discuss what intentional actions could reduce the risk. Include ways to prevent or reduce the impact of negative things and ways to increase the chances of positive things happening. Safeguards should enable a person to have a good life – not restrict her.



Decide together on the proposed safeguard actions and write them down. Move on to areas of lower risk or less importance to the person. You may not cover all

areas in one meeting. For each identified safeguard action, discuss who will help the person follow through and

make it happen. Determine if other resources are needed. Consider when each safeguard action should be reviewed. Make sure the safeguard actions are included in the person-centred plan.

Safeguarding the safeguarders

Make sure people are clear about their roles as safeguarders. Set personal boundaries.

Find ways to identify and talk about potential conflicts of interests that people may have in their safeguarding roles.

Ask what supports each person feels they might need to do a good job.

Share relevant information, with the person’s consent.

Provide training, skill-development, and mentoring opportunities for people in the support network.

Arrange to meet and network with others involved in safeguarding to talk about how things are going and to support each other.

Create opportunities for reflection on roles as safeguarders and provide feedback on how people are doing.

Encourage opportunities for personal renewal and inspiration.

Use the guides on building personal support networks.

Keep it Real

The quality, strength and relevance of safeguards can vary widely.

Be prepared for safeguards not to work as well as you expect.

Safeguards involving agencies and systems do not always work perfectly. Safeguards like internal complaint systems and program plans are not fool- proof. Recognize that you may need to help fully implement such safeguards.

Always design and assess safeguards based on the unique vulnerabilities of each person, and the specific risks they present.



Not all people or organizations have similar values, capacity and intention to implement safeguards well.

Often the best safeguards are informal actions that prevent negative things from happening.

Staff and members of support networks change and move on. Be prepared to do ongoing education and mentoring of people involved in safeguards.

Be prepared to try different ways to see what works best. You may need to take some risks and work outside your usual comfort zone.

Celebrate the small steps towards a person having a fuller and safer life. It may take many small steps to get to the most preferred place.

Renewing safeguards

• Be aware of changes in a person’s life or vulnerabilities.

• Be prepared to review and renew safeguards when something changes, or if something is not working well.

• Make sure that you change or redesign safeguards based on a unique vulnerability and a specific risk related to it.

• Look for opportunities to shift the emphasis from formal to informal safeguards. Opportunities are everywhere - sometimes it is a matter of seeing the possibilities.

• Practice your safeguarding mentality every day!



Appendix 6 Walker, M, Fulton, K & Bonyhady, B, 2013, A Personalised Approach to Safeguards in the NDIS

Level of capital

Level of personal capital Level of knowledge capital

Level of social capital Level of material capital

Level of risk

Significant capital

Ability to self advocate, strong identity, ability to make decisions, confident in self determination, autonomous physical capacity

Have recognised qualifications, skills and expertise. The capacity to access knowledge and information and to act on this knowledge

Lots of people connected to the person including family, friends, strong community presence and participation

I am financially secure with sufficient resources to meet my needs. I have a job and security of tenure

Low

Reasonable capital

Can make significant decisions known, limited understanding of their identity, reasonable sense of confidence, reasonable control over physical autonomy

Have knowledge and expertise that enables the person’s lifestyle. Limited access to information and can act on this information

Family, friends, some community presence

I have sufficient funds to meet my needs and lifestyle with security of tenure

Low to medium

Fair capital Requires support with decision making, limited self advocacy, limited understanding of own determination / direction including wishes and needs

Requires support to acknowledge / promote skills and contributions. Requires support to access information

One or two family, paid support team, no community connections

I have limited funds and mostly manage to meet my needs and lifestyle, with limited security of tenure

Medium to high

Low capital Little personal capacity in making major decisions, limited communication.

Limited education, lack of access to information and

No unpaid people in life, limited paid people

Reliant on income support, no employment, no

High



Limited autonomy over physical space and limited ability to create direction

knowledge. Limited and disconnected to cultural knowledge and community

inheritance, no secure housing, debt

Developmental investments to increase capital and have a safeguarding effect:

Self directed support Individualised funding Service models and approaches that support individualised options Individual ad family capacity building Organisational capacity building to promote and encourage strategies that increase investment in capital Outcome based monitoring that increases capital via review, reflection and refinement of plan/ outcomes Independent individual and system advocacy

Preventative safeguards

Restrictive practice legislation and guidelines Community visitor schemes Care concern units Police checks Acquittal procedures Registration of specialist disability providers – developmental non compliance based on national disability standards AND

accountability for individual outcomes that increase capital Outcome based monitoring Disability access and inclusion plans

Corrective safeguards

Ombudsman Consumer law Complaints procedures Police, courts, legal Litigation Child protection HADSCO / Disability Commissioners Anti-discrimination laws





Disability investments

Investment to increase personal capital

Investment to increase knowledge capital

Investment to increase social capital

Investment to increase material capital

Developmental safeguards

Investment to speak up for yourself

Lifelong learning and development

Communication

Technology

Environmental controls

Nominee for supported decision making

Advocacy

Family leadership

Family investment

Lifelong learning and development, carer development

Education,

Access to information, IT

Peer support

Assistance to achieve diverse experiences

Initiating social contact, opportunities for leadership, opportunity to speak to others, Family Advocacy

Assistance to build circles of support, build community relationships, support to develop friendships

Investment support

Disability Trust

Shared housing

Employment support

Preventative safeguards

Minimal personal care support

Relationships with paid support

Information, advice and guidance

Buyers’ guides

Income support, housing assistance, medicare

Corrective safeguards

Guardianship

Involuntary treatment orders

False and misleading advertising – corrective action

Guardianship Legal aid

Consumer redress process


Enhancing personal safeguards Agenda Attachment

Appendix 7 National Disability Services August 2014

Zero Tolerance: a framework to prevent and improve sector responses to abuse, neglect and violence experienced by people with disability

The table below expands the Zero Tolerance framework to highlight specific topics that disability service providers should consider and incorporate into their broader safeguarding approaches. Some topics may require multiple approaches to ensure understanding, ongoing training and action at appropriate levels of the organisation. In addition to development of information, tools and training resources under these topics, the Zero Tolerance project will highlight and share existing evidence based products and tools to support broader safeguarding in the disability sector. 1. Understanding Abuse Promoting and Applying Human Rights - applying the UN Convention on the Rights of Persons with Disabilities (UNCRPD) - abuse as a violation of human rights - right to justice

Education and training to understand abuse - understanding abuse, neglect, exploitation, violence in disability services - recognising lived experience - power and gender - abuse as a crime

Risk factors and Signals of Abuse - recognise when abuse is happening - prevalence of abuse - individual and service risk factors - trauma informed approaches

2. Practices and Safeguards which can help prevent abuse Primary Prevention Implementing policy and practice that protect people’s rights - committing to person centred approaches - strong leadership, policy and guidelines - staff training, deployment and supervision - training on communications preferences - encouraging bystander action

Empowering people with disability - providing information and training on rights, self-advocacy and speaking up - abuse prevention education and training - relationships and sexuality training - building connections outside the service - engaging family and advocates

Create the right organisational cultures - safer recruitment and screening practices - establishing cultures of respect - attitudes, behaviour and boundaries - creating positive feedback cultures - addressing barriers to disclosure - openness to external mechanisms - clearly documented whistleblower protections

3. Risk factors for specific groups and service settings Targeted Prevention Targeted approaches for disability groups at increased risk of abuse - people with intellectual disability and ABI - women and children with disability - people with communication support needs - indigenous and CALD communities - people isolated from family and community - people at risk of familial abuse

Understand and address service features and settings that increase risk - abuse in accommodation settings - personal care - unpacking systemic abuse - remote and unsupervised service provision

Understanding Behaviours of Concern - Identifying causes of behaviours - Using positive behaviour support - Reducing and eliminating the use of restrictive practices

4. Responding to Abuse Secondary Prevention Early intervention and response - intervening early: guidelines on responding to early indicators of abuse and trauma - clear expectations, policies and procedures for responding to disclosures and allegations - timely reporting to maximise victims recall

Supporting the person - ensuring safety of victims through trauma informed key support person - response informed by victim’s experience - engaging family, carers and significant others - linking to specialist support services, complaints bodies, police and advocacy - addressing barriers to justice

Meet organisational requirements - Acknowledgement, Actions, Answers, Apology - rigorous approaches to investigations - clear disciplinary processes that protect victims - approaches meet needs of whole organisation including other clients, families and staff

Briefing paper the Independent Advisory Council of the NDIS August 2015 Page 55

Enhancing personal safeguards Agenda Attachment

- evidence gathering and record keeping - ongoing person-centred healing strategies

- communication of actions and outcomes - meeting legislative and external body obligations

5. Analysis, Learning and Improvement Tertiary Prevention Maintaining and Analysing Records - rigorous quality monitoring - meeting incident reporting requirements - review and analysis of individual incidents - maintaining records on alleged staff to client abuse

Continuous Improvement Approach - review staff knowledge and competencies - using data to inform improvements to abuse prevention and response processes - exploring systemic safeguarding gaps - addressing organisational impact of abuse

Supporting initiatives to reduce abuse - using referee checks to identify people of concern in the sector - working collaboratively with mainstream, specialist support services and advocacy - contributing to cross-sector approaches

Briefing paper the Independent Advisory Council of the NDIS August 2015 Page 56