Submission

In response to the National Disability Insurance Scheme Amendment (Quality and Safeguards Commission and Other Measures) Bill 2017

Submitter details

JFA Purple Orange

104 Greenhill Road

Unley SA 5061 AUSTRALIA

Telephone: + 61 (8) 8373 8333

Fax: + 61 (8) 8373 8373

Email: admin@purpleorange.org.au

Website: www.purpleorange.org.au

Facebook: www.facebook.com/jfapurpleorange

Contributors

Mikaila Crotty, Project Officer

Jackie Hayes, Leader Social Policy and Initiatives

Robbi Williams, CEO

About the Submitter

JFA Purple Orange is a non-government, social profit

organisation. Anchored on dialogue with people living with disability, their

families, service providers, government and other stakeholders, we seek to

identify policy and practice that has the prospect of advancing peoples

chances of a good life. Our work is anchored on the principles of

Personhood and Citizenhood. Our work includes research, evaluation,

capacity building, consultancy, and hosted initiatives.

Contents
1.0 Summary ……………………………………………………………………………………………………………………. 3
2.0 Purpose ……………………………………………………………………………………………………………………… 3
3.0 Introduction ……………………………………………………………………………………………………………….. 3
4.0 Overarching Principles ………………………………………………………………………………………………….. 4
5.0 Key Elements of the Bill ………………………………………………………………………………………………… 6
- 5.1 Establishment of the NDIS Quality and Safeguards Commission and the office of the NDIS Quality and Safeguards Commissioner …………………………………………………………………………………… 6
- 5.2 Behavioural support function of the Commissioner ………………………………………………………. 7
- 5.3 Key Issue 1: the need to manage the tension between dignity of risk and duty of care ……… 8
- 5.4 Key Issue 2: the balance between carrot and stick ………………………………………………………… 9
- 5.5 Key issue 3: the need to grow a Positive Behaviour support culture Australia wide …………. 10
- 5.6 NDIS Practice Standards ………………………………………………………………………………………….. 12
- 5.7 Co-design ………………………………………………………………………………………………………………. 12
- 5.8 Public register of providers ……………………………………………………………………………………… 12
- 5.9 NDIS Code of Conduct …………………………………………………………………………………………….. 13
- 5.10 Discretionary power of the Minister …………………………………………………………………………. 13
6.0 Concluding remarks ……………………………………………………………………………………………………. 14
7.0 Request to meet ………………………………………………………………………………………………………… 14

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1.0 Summary

The National Disability Insurance Scheme (NDIS) is a critical social welfare reform in

Australia and presents a genuine opportunity for people living with increased vulnerability to receive the support needed to deliver transformational benefits. These are benefits that assist the person to build confidence, to build knowledge and skill, to build access to ordinary mainstream resources like other people, to build personal networks, and to find genuine fair-waged work.

2.0 Purpose

JFA Purple Orange welcomes the opportunity to contribute to the Senate Standing Committees on Community Affairs’ Inquiry into the National Disability Insurance Scheme Amendment (Quality and Safeguards Commission and Other Measures) Bill 2017. This submission is based on the views of JFA Purple Orange, augmented by our recent work in the space of reducing restrictive practices and safeguarding vulnerable adults.

3.0 Introduction

JFA Purple Orange is the social policy agency of the Julia Farr group, a trio of social profit, on-government organisations based in South Australia, working to improve the life chances of people living with disability. The Julia Farr group (JFA Purple Orange, Julia Farr Housing Association, and the Julia Farr Trust and Julia Farr MS McLeod Benevolent Funds) and its predecessor organisations have been involved with the disability community, older people and other vulnerable groups for more than 130 years.

We are an independent, non-government organisation that fosters innovation, shares useful information, and promotes policy and practice that support and improve the life chances of people living with disability.

4.0 Overarching Principles

We believe the fundamental principles underpinning a quality and safeguarding legislative framework should reflect what we understand to be the goals of the overall NDIS, ie information and supports that:

maximise people’s control and choice, so they have authentic authorship of their own lives (termed Personhood in our Model1)
advance people into valued roles in community life and economy (termed Citizenhood in our Model)

Further, we believe that every human being is vulnerable and no one is truly independent from a reliance on the efforts of others. This is why people form communities, to generate mutual benefit through people contributing via valued roles and in turn gaining benefit from the contributions of others.

The principal issue facing people living with disability is that their disabling circumstances currently create increased vulnerability compared to the rest of the population. Such vulnerability may not be limited to the nature of disability but to the way our communities currently respond.

This signals the need for investment to assist people into valued roles in community life. The NDIS represents a major focus of such investment, in addition to what might reasonably be expected from the successful implementation of Australia’s National Disability Strategy.

As for all of us, the journey to valued roles and a good life is marked by uncertainty; we make decisions and take actions without knowing for sure whether our efforts will definitely bring the benefits we seek. This uncertainty is also known as risk, because the possible outcomes include those that are undesirable.

Such risk cannot be removed without removing the opportunity itself, and this would run counter to the goals of the NDIS and the National Disability Strategy and what happens in most people’s lives. Therefore, the emphasis needs to be on how best to manage risk so as to tip the odds in favour of success.

A successful safeguard is a measure that manages the risks associated with vulnerability without undermining access to opportunities for a good life. If a measure to manage a person’s vulnerability can be seen to reduce or hinder a person’s access to valued roles, then that measure is unacceptable and should not feature in any NDIS arrangement. We believe this principle should be a cornerstone of the legislative framework, underpinning developmental safeguards, preventative safeguards and corrective safeguards.

The National Disability Insurance Scheme Amendment (Quality and Safeguards Commission and Other Measures) Bill 2017 gives effect to the Commonwealth Government’s regulatory responsibilities under the Framework. We might take this opportunity however to restate that this is not where the ‘centre of gravity’ of investment should lie.

In other words, as a detailed strategy and budget is crafted for the implementation of the NDIS Quality and Safeguarding Framework, the greatest emphasis should be on the developmental domain. Not only does this send the right signal about the NDIS priorities in safeguarding, it also makes the most sense because it is the developmental domain that is most directly related to the building and sustaining of natural safeguards in people’s lives. It is proactive.

5.0 Key Elements of the Bill

5.1 Establishment of the NDIS Quality and Safeguards Commission and the office of the NDIS Quality and Safeguards Commissioner

The Bill establishes the NDIS Quality and Safeguards Commission and the office of the NDIS Quality and Safeguards Commissioner to protect and prevent people with disability from experiencing harm arising from poor quality or unsafe supports or services under the National Disability Insurance Scheme (NDIS).

There are a number of important roles that will also be created by the Bill in the form of national regulatory elements. These include the introduction of the following roles and responsibilities:

an NDIS Registrar who will be responsible for managing the Commissioner’s registration function under new section 181F which includes reportable incidents as a condition of registration;
a Complaints Commissioner who will be responsible for managing the Commissioner’s complaints functions under new section 181G and will also receive reports of incidents;
a Senior Practitioner who will be responsible for managing the Commissioner’s behaviour support function under new section 181H.

We support the introduction of a single regulatory body encompassing registration and complaints wherein regulatory responses can move up and down the regulatory pyramid quickly and easily as required by different cases and changing circumstances.

However the NDIS Quality and Safeguarding amendment Bill in and of itself does not provide a sufficient answer to systemic issues of violence, neglect, abuse and other shortcomings identified in the Senate inquiry 2015 report2. There are countless cases,

harrowing cases, of abuse, neglect and violence toward people with disability that cannot

and must not be ignored. There is evidence that people with disability experience much

higher rates of violence than the general community3.

A response must go beyond acting to safeguard those who are in receipt of services paid for

by the NDIS or ILC. The NDIS at full capacity will include maybe 10 per cent of people with

disability, so the safety and quality in their service provision must also be safeguarded.

Provisions must address the many forms and the broad range of services and settings where

it occurs.

This bill, which is about the narrow band of people accessing the NDIS, does not reduce the nimperative for a Royal Commission into violence and abuse of people living with disability.

5.2 Behavioural support function of the Commissioner New section 181H sets out the behaviour support function of the Commissioner. It is

envisaged that a national Senior Practitioner with appropriate clinical expertise will be

responsible for providing leadership in behaviour support, and in the reduction and

elimination of the use of restrictive practices, by NDIS providers, including:

building capability in the development of behaviour support through:
- developing and implementing a competency framework for registered NDIS providers whose registration includes the provision of behaviour support assessments and developing behaviour support plans; and
- assessing the skills and experience of such providers against the competency framework; and
developing policy and guidance materials in relation to behaviour supports and the reduction and elimination of the use of restrictive practices by NDIS providers; and
providing education, training and advice on the use of behaviour supports and the reduction and elimination of the use of restrictive practices; and
overseeing the use of behaviour support and restrictive practices by;

3 Ibid

monitoring registered NDIS provider compliance with the conditions of
collecting, analysing and disseminating data and other information relating to

the use of behaviour supports and restrictive practices by NDS providers;

and

undertaking and publishing research to inform the development and evaluation of the

use of behaviour supports and to develop strategies to encourage the reduction and

elimination of restrictive practices by NDIS providers.

5.3 Key Issue 1: the need to manage the tension between dignity of risk and

duty of care Re: regulatory function: compliance monitoring, investigation and enforcement action

JFA Purple Orange advocates that the centre of gravity of section 181H be around risk enablement in support of strong outcomes. There are solid examples from other settings where such an approach has worked well. For instance, in their risk enablement policy, the UK’s Essex County Council recognise that a major factor inhibiting achieving good outcomes for people is operating within a system where there is a fear of putting the organisation at risk (e.g. financially, in terms of public relations, reputation or in breach of the law). Therefore it is important to spend time with an individual to develop a good support plan with a completed risk assessment. High quality and clear information is required to help people make informed choices. Appropriate intervention and advocacy services should be used for those with language or sensory needs to ensure the best possible outcomes. The most effective organisations are those with good systems in place to support positive approaches to risk rather than defensive ones. A ’safety first’ approach that does not concurrently support people to have choice and control is an inhibiting factor for achieving good outcomes for people living with increased vulnerabilities.

JFA Purple Orange believes that people are not properly safeguarded when there is a mindset that ‘risk equals harm’, because this can close off ordinary valued opportunities to the person. In such situations, ‘safety equals harm’, because the pursuit of safety has closed

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off opportunities to the person. The loss of such opportunities is harmful to the person’s life chances.

The circumstances that can drive a sentiment that ‘risk equals harm’, and which therefore the amended legislation must avoid, include:

services being fearful of people/consumers/participants making unwise decisions or choices that could reflect poorly on the services received;
the mistaken belief that if a person is deemed to not have full decision-making capacity, that this somehow means they can’t be supported to understand and adopt risk in pursuit of normal things that are important to them.
People need to have a good understanding of the choices they are considering
A belief that safeguarding means avoidance of exposing vulnerable people to any unnecessary risks

Methodologies such as supported decision-making and risk enablement panels are positive ways of dealing with these issues. The emphasis is on supporting positive risk taking while maintaining duty of care and decisions are made in a shared and informed way, with transparent, shared responsibility.

Therefore it is our recommendation that:

Recommendation

The legislation must be formed in ways that both protect people and safeguard their access to ordinary valued life opportunities and the ordinary risks that go with that.

5.4 Key Issue 2: the balance between carrot and stick Re regulatory function: national oversight and policy setting in relation to behaviour support and monitoring the use of restrictive practices, within the NDIS with the aim of reducing and eliminating such practices

JFA Purple Orange recognises the importance of establishing a balance of investment between guidance and capacity-building elements (the ‘carrot’) and compliance elements such as investigation and sanction (‘the stick’). It is our agency’s view that the balance of investment should be in favour of the ‘carrot’, especially in terms of deepening service

agencies’ intrinsic connection with, and capacity to uphold, the values underpinning

alternatives to restrictive practices.

Therefore, in relation to behaviour support restrictive practices our recommendation is that:

Recommendation

Any legislative provision, regulatory oversight and policy setting asserts a high level of investment in capacity-building activities relative to that in compliance activities.

      5.5    Key issue 3: the need to grow a Positive Behaviour support culture
             Australia wide
     Re regulatory function: national oversight and policy setting in relation to behaviour

support and monitoring the use of restrictive practices, within the NDIS with the aim of reducing and eliminating such practices

Positive behaviour support approaches are evidence-based and are an important element in assisting the life chances of someone with ‘behaviours of concern’. This is because these approaches can help safely eliminate restrictive practices.

Positive Behaviour Support (PBS) arose in the 1980s in the context of emerging human rights and values-based approaches to disability support and in conjunction with the broader principles of applied behaviour analysis (ABA). This differs to the targeted ABA approach that is used as a form of early intervention for children with autism - which although uses the same behavioural principles, does not generally look at the person in their broader functional context. PBS is an approach, rather than a pre-determined list of strategies. Perhaps the clearest description of this approach has been most recently stated by Kincaid et al (2016 p.37):

“PBS is an approach to behaviour support that includes an ongoing process of research-based assessment, intervention, and data-based decision making focused on building social and other functional competencies, creating supportive contexts, and preventing the occurrence of problem behaviours. PBS relies on strategies that are respectful of a person’s dignity and overall well-

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being and that are drawn primarily from behavioural, educational, and social sciences, although other evidence-based procedures may be incorporated. PBS may be applied within a multi-tiered framework at the level of the individual and at the level of larger systems (e.g., families, classrooms, schools, social service programs, and facilities)“.

As such, the use of PBS relies on what is termed ‘functional behavioural assessment’, which involves a skilled practitioner working with key stakeholders. In collaboration, a multi-modal form of assessment is undertaken to gather historical and current information and observations to elicit an understanding of the underlying purpose of function of the behaviour. This approach allows for more targeted development of intervention strategies which can be clustered into four main categories: (1) antecedent and environmental strategies that are intended to reduce the context out of which problem behaviour arises and prevent behaviours of concern as much as possible; (2) skill building strategies, including the targeting of ‘replacement skills’ to help better equip the person to get their needs met in more adaptive ways; (3) contingency management strategies, which involves looking at what may have been previously reinforcing the behaviour and what the person’s motivations are so that pay-offs for problem behaviour can be reduced and reinforcements for desirable behaviours can be increased; and (4) reactive and/or de-escalation strategies to assist with the safe management of incidents.

It is recommended that the above process needs to be implemented over a period of time, and in collaboration with stakeholders who are likely to be implementing the plan. A behaviour support plan is intended to guide staff and supporters. Plans should be monitored, reviewed and modified over time based on data and evidence of effect.

Unfortunately, positive support clinicians reported during this consultation that many plans can be ‘incident management plans’ which only address the last of these 4 areas and lack the holistic perspective required. This is perhaps a reflection that many agencies treat behaviour support planning as ‘a template or document’ that is used to mitigate risk and cover their duty of care to staff. However, to be effective, PBS really needs to be seen as a dynamic process for both the individual and staff and it needs to be strongly embedded into

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the culture of organisations as a valued process. This requires strong leadership, a

supportive team environment and an overall culture across the Australian disability sector

that prizes the merit and utility of this approach and provides capacity for staff to apply it.

It is our recommendation that:

Recommendation

In relation to behaviour support and restrictive practices, any national legislative provision, regulatory oversight and policy setting, forges a leadership strategy that centres around the expectations and best practice of positive behaviour support methodologies.

5.6 NDIS Practice Standards JFA Purple Orange supports the introduction of the new NDIS Practice Standards which will unify, and be a significant improvement on, the varied current State based systems. The national approach will ease the burden on providers who operate across multiple States and Territories. This support is conditional on the voice of people living with disability being involved in the development of those practice standards, for example through a genuine co- design process.

5.7 Co-design JFA Purple Orange is pleased to see that the National Disability Insurance Scheme Amendment (Quality and Safeguards Commission and Other Measures) Bill 2017 includes a new principle of co-design that strengthens the inclusion of people with disability in the NDIS decision-making framework as integral to the NDIS. The Bill addresses the key issues raised in our submission to the Department of Social Services NDIS Code of Conduct Discussion Paper which place a person living with disability at the centre of service provision.

5.8 Public register of providers JFA Purple Orange supports the establishment of a nationally consistent public register of providers that gives participants genuine choice and control. JFA Purple Orange believes that at a minimum detailed information on registered providers (including a financial

management services) should be publically available to participants to ensure that
participants can choose quality and safe services. The register should cover the class of
supports or services they are registered to provide; the class of person they are registered
to provide for; the period of registration; and any conditions on the registration imposed by
the Commissioner; the provider’s performance; and any enforcement action or sanction.

People living with a disability can also play a key role in the monitoring of services, providing their input into how supports could be improved. At Choice Support, London, ‘Experts by Experience’ is a program where over 400 people living with disability are trained and paid to accompany inspectors from the Care Quality Commission on inspection visits.

5.9 NDIS Code of Conduct

JFA Purple Orange is pleased to see, as recommended in our submission on the NDIS Code of Conduct Discussion Paper, that, information given to a person living with disability is to be explained to the maximum extent possible in the language, mode of communication and terms which that person is most likely to understand. Further, the independent statutory authority will investigate, manage, conciliate and resolve complaints and as part of this responsibility participants will be supported in all their dealings and communications with the Agency and the Commission so that their capacity to exercise choice and control is maximised in a way that is appropriate to their circumstances and cultural needs.

5.10 Discretionary power of the Minister

There has been concern raised that the legislation will provide too much discretionary power to the minister to make regulations regarding the framework and which will not require consensus from the states and territories and which might undermine the consistency of the national scheme. This should be mitigated, for example through a robust co-design methodology.

6.0 Concluding remarks

Good supports are an important ingredient for people to take up valued roles as members

of their community and contributors to the economy. The NDIS aims to fund supports that

advance its participants’ chances of moving into rich and meaningful lives. This is consistent

with the National Disability Strategy and the United Nations Convention on the Rights of

People with Disabilities.

This means that the support arrangements for each person need to deliver transformational

benefits. This takes vision, highly intentional planning, belief in the person’s intrinsic value,

and deep respect for the person’s central role as the decision maker in their own life. This is

as true for people living with increased vulnerabilities as it is for any other person. Any and

all legislative provisions in relation to the NDIS must be crafted in ways that advance and

uphold this.

7.0 Request to meet

We would welcome the opportunity to meet with the Select Committee to discuss the

submission contents in more detail, and to provide additional information/perspective as

required.

For further information about this submission, please contact:

Robbi Williams

Chief Executive Officer

Julia Farr group

Phone: (08) 8373 8333