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

Table of contents

Executive Summary

Recommendations

Section 1 Context: a society fearful of risk

Section 2 The case for a different approach to risk

Safeguards and risk in the NDIS context

Implications for the NDIS

Section 3 Assisting people with disability to enhance their personal safeguards

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

Requirements of planning for safety and safeguards

Effective processes to manage risk

Implications for the NDIS

Implications for preventative safeguards

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

Developing personal safeguards

Facilitating relationships

Empowering people with disability to speak for themselves

Implications for the National Disability Insurance Agency

Bibliography

Appendix 1Common core principles to support self-care

Appendix 2Supported decision-making tool

Appendix 3:Risk enablement panel

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

Appendix 5 A guide to identifying and incorporating intentional safeguards

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

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

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 aforum 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 thinksthat they are also applicable to the range of contracts that the Agency may enter into thatrelate to safeguarding.

Recommendation 1:The Agencyprioritisesassisting 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:

  1. 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.
  2. Building an understanding of safeguards into pre-planning, planning and plan implementationconversations.
  3. 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.
  4. Developing specific frameworks that assist people to plan their own safeguards.
  5. Identifying the types of risks that people may generally face and developing resources to assist people to develop safeguards, for example:
  6. Safeguards for people who self manage (e.g. safeguards in hiring staff, having the right insurance etc.)
  7. Safeguards for people moving into their own homes, and
  8. 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:TheAgency (through its approach to ILC investments) providesresources 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)providesresources 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 surgephase of the NDIS, the IAC recommends:

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

  1. plan and implement safeguards
  2. self advocacy or empowerment training
  3. supports that reduce the risk of abuse and neglect, and
  4. 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 WorkHealthandSafety(WHS) challenges. Where the dispute extends beyond the role of a Support Coordinator, the participant mustbe 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 understandsthat the SDOM provides support co-ordination for the most vulnerable participants in the intensive and super intensive streams, in both preplanning 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: Thatthe 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, planapprovals,complaints,andqualityandinnovation.

Recommendation 13: That the Agency undertakes researchon 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 curtailchoiceandcontrol.

Recommendation 15:Thatthe Agency promotes relevant and provenUK processes that integrate personalisation and safeguarding including:

  1. Tools to support decision making to enable risk
  2. Processes that enableAgency staff, outsourced planners and LACs to share decision makingwithcolleaguesifthereareconcernsaboutrisk.

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 LACsin 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:

  1. the capacity to purchase training for staff
  2. pricing structures that recognise and value training, and
  3. 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 1Context: 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 representativeof government and service providers and not reflective of the concerns of service users.

As Skills for Care UK[1] 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. Theconsultation paper onthe Framework(DepartmentofSocialServices: 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.

Section 2The case for a different approach to risk

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

  1. The currentrisk averse approach under state andterritory 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.