Submission on the NDIS Bill 2013 | External submission

Queensland Advocacy Incorporated

Systems and Legal Advocacy for vulnerable people with Disability

Submission on the NDIS Bill 2013

Principal QAI Recommendations

The Bill must explicitly mandate independent and independently funded advocacy.
The Bill must ensure people who lack capacity receive the decision-making supports they need to fully participate in the NDIS.
The Bill must ensure all participants are provided with the resources and training they need to self- direct. Choice and control require training, knowledge and resources to develop.
The Bill must prioritise autonomy over risk management. People must be allowed to make mistakes.
The Convention on the Rights of Persons with Disabilities and Human Rights Indicators for People with Disabilities provide the standards and content for ‘reasonable and necessary’ supports.

About QAI

Queensland Advocacy Incorporated (QAI) is an independent, community-based systems and legal advocacy organisation for people with disability in Queensland, Australia.

QAI’s mission is to promote, protect and defend, through advocacy, the fundamental needs and rights and lives of the most vulnerable people with disability in Queensland. QAI does this by engaging in systems advocacy work - through campaigns directed to attitudinal, law and policy change, and by supporting the development of a range of advocacy initiatives in this State.

QAI also provides individual legal advocacy in support of persons whose disability is at the centre of their legal issue. This is done by way of advice or advocacy within the limitations of QAI’s resources.

Introduction

Self-direction, control and choice are watchwords for an NDIS. As the Productivity Commission report 1 advises, this is a signal opportunity for the Commonwealth to level the field of opportunity for citizens with disabilities and to activate our stated human rights commitments. 2 Structured correctly this bill will realise a bold vision people with disabilities in control and with the means to work and learn and play how they want, when they want.

Structured incorrectly, this legislation will only mean more of the same for people with disabilities, providing more money to hire support workers and purchase aids and equipment for people in Tier Three, but leaving untouched the unbalanced institutional relationships between services and people with disabilities.

Today, 25 January 2013, Brisbane’s The Courier Mail reported allegations of client abuse in a local disability care facility (p. 25). More than bricks and mortar, institutions are about human relationships, and these, as much as money, are key to the success of the NDIS. Institutions are naturally disempowering, their objectives slanting towards ease of management rather than choice and control for the individual. There is strong evidence that abusive relationships are endemic to institutional settings, whether they be large institutions or small group housing arrangements (see, for example, Wallace 2012).

The Bill must provide mechanisms to help people and services swim against the institutional current. It does not yet do this, although we accept that without the Rules we do not yet have a complete picture. UK experiences with self-direction show that the collective inertia of long-term institutional relationships between services and clients and an ingrained culture of top-down service provision tend to preserve the status quo. Expectations of positive change may soon be disappointed. Participants and supporters with a lifetime of learned dependence and little or no experience of money and personnel management are unlikely to be equipped to self-direct. This must change. It is vital that the Bill guarantees training and support that will make participants masters of their own lives and assist service providers to make the essential and perhaps for them, uncomfortable transition from overbearing superintendents of the lives of people with disability to humble customers and servants of those people.

1 Disability Care and Support No 54. 2 Such as the Convention on the Rights of Persons with Disabilities.

Specific Comments on the Bill

Chapter One

s 4. Include Advocacy

These principles ought to include a statement of commitment to a right to independent advocacy consistent with the National Disability Advocacy Framework- such as ‘People with disabilities have a right to access independent advocacy support to promote, protect and ensure their full and equal enjoyment of all human rights necessary to enable full community participation.’ Such access in son idle indulgence. Many people with disability lack the voice to llspeak for themselves. Many of those who have a voice have lost the strength to employ it in their own interest after years of unequal and debilitating contest over their rights and entitlements, often with the very agencies established to promote their interests.

s 4 (12) Include Caveat

‘The role of families, carers and other significant persons in the lives of people with disability is to be acknowledged and respected’ should be followed by a caveat … ‘but their wishes should always be subordinate to those of the person with disability’. The legislation should not be framed on the assumption that families, carers and significant others will always act in a person’s interest.

s. 5 Support for capacity: Section 5 should be strengthened. It must recognise that people with disabilities have the right to the ‘support they may require in exercising their legal capacity’ per Article 12 of the Convention on the Rights of Persons with Disabilities. The Bill should explicitly recognise substitute decision-making provisions set down in state and territory guardianship legislation and support and promote community and family based decision-making supports consistent with Australia’s obligations under Article 12.

Chapter Two-

Additional clause The Bill should include explicit recognition of and support for independent advocacy. Disability Care and Support acknowledged that properly funded independent advocacy is integral to the checks and balances essential to ensure that people with disabilities receive the supports to which they are entitled, and to ensure the efficient delivery of key NDIS objectives. The NDIS Bill demands a provision that allocates an appropriate proportion of NDIS funding to independent advocacy, and that that proportion of funding be externally administered by an independent statutory agency.

s 14- Oppose block funding:

Except in specific circumstances we oppose block funding to services. Block funding is by its nature undermines the NDIS goals of choice and control. We accept that block funding will benefit participants, however, where:

the purchasing of services as an individual would be inefficient or impractical, for example, where services must coordinate networks of volunteers or provide information and advice to people with specific conditions;
where the sum of participants’ demands for a service is insufficient to sustain it, such as in in remote and rural areas where the sum of individualized funds does not reach the critical mass.

Chapter Three - Participants and their Plans

Part 1- Becoming a participant

s 22- Age: Queensland Advocacy Incorporated does not support an age restriction- the Convention on the Rights of Persons with Disabilities does not discriminate here and this Bill is inconsistent with the Convention insofar as it does so.

s23- Residency: Queensland Advocacy Incorporated believes that any Australian resident should be entitled to support.

s 24- Disability requirements: the Convention on the Rights of Persons with Disabilities states that an impairment should be or be likely to be ‘long-term’ and that the person’s support needs likely to continue ‘long-term’. Establishing the permanence of a disability should not be required as it is not always possible to do so.

s 26- Requests a CEO may make: It is not equitable that a prospective participant’s application may be withdrawn because of a third party’s failure to provide requested information. Applicants should not be disadvantaged by actions of third parties.

s 30- Revocation: Natural justice demands that participants be given written notice of the CEO’s intention to revoke and written reasons for doing so.

S 33 - Owning the Plan:

Section 33 must ensure that the participant has a sense of authorship and ownership of the support plan, and that the planning is not dominated by professional assessment of a person’s needs.

Overseas experience (see Duffy and Williams op cit) tells us that control over expenditure is more important than money itself. Real improvement in people’s lives will only come when people feel that they can make choices that they couldn’t make before- when people have the power to choose who their service provider will be, or to choose to go it alone and make their own support arrangements with no service intermediary at all.

The danger is that the legislation, despite good intentions, will fail to reshape existing institutional relationships. Above all the danger is that nothing will change because of

a failure to do the preparatory work, the skills training and resourcing that will transform people from passive consumers to active managers of their own support networks;
a managerial preoccupation with financial accountability that imposes rules of expenditure and acquittal so strict and so specific that autonomous action is impossible and
a paternalistic aversion to risk that denies people the chance to take chances and the right to make mistakes and learn from those mistakes.

According to Duffy and Williams, the lessons from the English experience are that government only needs to control a few basic decisions about what it will give, and what it will get in return, including 1. how much money a person should be allocated 2. whether to sign off on that money; and 3. what the NDIS can learn from that person’s experience. 3

Therefore, Plans must be formulated on the assumption that people:

are experts in their own lives
have the capacity to make their own decisions
are inspired by their own hopes and dreams and are diminished insofar as they are required to conform to other people’s judgements about what is right for them; and
must be provided with whatever training, resources and supports are necessary to make their decisions.

3 Simon Duffy and Robbi Williams. 2012. The Road to NDIS: Lessons from England about Assessment and Planning. Adelaide: JFA Purple Orange.

There must be safeguards to protect people from abuse, exploitation and neglect. However, such safeguards should not upset a system bias towards a person’s right to make their own decisions about how funds are used and how arrangements are managed.

The key is that such safeguards should never deprive a person of their right to make decisions, and that ‘all reasonable efforts should be made to assist people with impaired decision making ability to participate to the fullest extent possible in decisions about themselves’.4 One of the gravest dangers of systemic change is the tendency for the system to try to solve too many problems, and in the process, rob citizens of the opportunity to find better solutions and improve these solutions over time.

s 33 (1)- Who Plans?

The word “planner” could be clearer. Does it mean an allied health professional? If so, this should not be mandatory. The person with a disability should have choice about who assists him/her with their plan. Health professionals tend to be conservative, emphasize risk minimization over autonomy, and have limited expectations of a person with a disability. People must be allowed to ‘think outside the box’ and ‘dare to dream’ what their lives could be like.

s 33 (4)- Assessment and approval or disapproval are interventions in the person’s life.

We know from the recent Queensland experience of the introduction of Growing Stronger that the assessment and approval process is an enormous source of anxiety for applicants. Despite the mammoth investment in the NDIS the great majority of applicants will of course be rejected. They will feel devalued, distrusted, hurt, frustrated and despairing. It may be the only contact they and their families ever have with government, and a negative one.

No timeframe has been placed on the approval of participants supports and the receipt of funds. This is a crucial part of the process and of course a source of considerable anxiety for many. Participants have a right to know what to expect and should be informed of the progress of their application.

s 34- Reasonable and necessary supports.

The concept ‘reasonable and necessary supports’ demands substantive content- benchmarks and minimum standards that will better define NDIS goals. Does reasonable and necessary support mean, for example, that a person with severe and profound disabilities living in an institution who wants to live independently in the community would be given the support to do so? Does it mean that they would be provided with the money and resources they need to live in their own home with their own support team, should they wish it? Section 34 does not answer this question, but perhaps the rules will. We commend to you our own Human Rights Indicators for People with Disability 5 as a guide to developing those Rules.

4 Victorian Law Reform Commission (2012) Guardianship: Final Report. Melbourne, Victoria Law Reform Commission: page xxii. 5 http://www.humanrights.gov.au/disability_rights/convention/DC131207HumanRightsIndicatorsV2%20(2).zip

The Human Rights Indicators for People with Disability developed by Queensland Advocacy

Incorporated set down clear, simple and very specific indicators for each of the principal articles of the Convention on the Rights of Persons with Disabilities including those dealing with accommodation, health, legal rights, access, work and employment, participation, education and more. When considering the question of ‘reasonable and necessary supports’ with regard to accommodation, for example, the principles determining reasonable and necessary accommodation supports would include the following.

Persons with disability live in the community with choices equal to others.
Persons with disability are included, and participate, in the community.
Persons with disability are able to choose their place of residence on an equal basis with others.
Persons with disability are able not obliged to live in any particular living arrangement.
Persons with disability have access to a range of in-home, residential and other community support services necessary to support living and inclusion in the community and to prevent isolation and segregation from the community.

The Indicators set out more explanatory detail:

The article (Article 19) is directed to the elimination of segregated, congregate and socially isolated environments in which persons with disability have historically been forced, or obliged, to live. The article requires State Parties to ensure that persons with disability are able to live in the community with accommodation options equal to others, and that these options support the inclusion and participation of persons with disability in community life. The article also provides that persons with disability must be able to choose with whom they live on an equal basis with others. In order to realise these freedoms, State Parties are obliged to ensure that persons with disability have access to the support services they require in order to live freely in the community, and to avoid isolation and segregation from the community. These support services include in home support, residential and community support services, and personal care. The article also seeks to ensure that mainstream community services and facilities are available and responsive to the needs of persons with disability so as to facilitate their freedom to live in and be a part of the community.

We commend the indicators as a reference. They and the Convention on the Rights of Persons with Disabilities are useful guides for the development of Plans.

Bibliography

Craig Wallace Ramp Up 13 Nov 2012 ‘Commission must also challenge silence about abuse and disability’

http://www.abc.net.au/rampup/articles/2012/11/13/3631851.htm