Developmental
Disability Council
Of WA (Inc)
SUBMISSION TO SENATE COMMITTEE ON
COMMUNITY AFFAIRS
INQUIRY ON THE BILL FOR THE
NATIONAL DISABILITY INSURANCE SCHEME
Developmental Disability Council of WA (Inc) People with Disabilities WA
Citywest Lotteries House Oasis Lotteries House
2 Delhi Street, West Perth WA 6005 Suit 1/37 Hampden Road
NEDLANDS WA 6009
Website: www.ddc.org.au Website: www.pwdwa.org
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Developmental Disability Council of WA (Inc) (DDC) and People with Disabilities WA (PWDWA) welcome the introduction of the National Disability Insurance Scheme (NDIS). We would appreciate the opportunity to discuss the views of our members with the Senate Committee on Community Affairs when it conducts hearings in Perth on 18 February 2013.
DDC has for 25 years been the peak and systemic advocacy organisation in Western Australia for people with development disability and their families. Our membership includes individuals, families, supporters and carers, support groups and service providers in metropolitan Perth and throughout regional Western Australia. We have advocated on unmet need for specialist disability support services for people with disabilities and their families throughout this time, and have lead numerous state and national campaigns. Our unique Politician Adoption Scheme (PAS) connecting politicians with local constituents living with disability was initially set up for this purpose.
Since 1981, PWdWA has been the peak disability consumer organisation representing the rights, needs and equity of all Western Australians with a physical, intellectual, psychiatric or sensory disability via individual and systemic advocacy. PWdWA is run BY and FOR people with disabilities and as such, strive to be the voice for all people with disabilities in Western Australia.
PWDWA
Both DDC and PWDWA have been actively engaged in the NDIS with a range of national groups of people with disabilities, families and carers, and advocates, namely National Council on Intellectual Disability (NCID), Australian Federation of
Disability Organisations (AFDO), People with Disability Australia, Disability
Advocacy Network Australia (DANA) and Western Australia’s Individualised
Services (WAIS). DDC CEO, Taryn Harvey, is a member of the WA NDIS Reference Group.
We endorse the views provided by those organisations in their submissions and support a number of the positions they uphold on specific issues they have raised and the alternatives they have offered. In addition, DDC and PWDWA have engaged with their membership to both inform people of the progress of the legislation and to seek their feedback on the particular issues of interest and concern to them. We conducted a joint membership event in January 2013 to 2
provide members with an overview of the legislation, of key issues raised in responses to the legislation, and to gather members feedback on those.
We value this opportunity to provide feedback on the legislation, as it is the first opportunity that people with disabilities and their families have had to see how the detail of the NDIS is starting to take shape and to begin to reflect on how they might interact with it on a day to day basis. Until now, the public discourse about the NDIS has largely been at the highly conceptual and principle level, and while they are important conversations to have they give little insight into how the NDIS will look and feel for people in their lives.
In addition to reiterating our support for the submissions provided by our colleagues in other peak and advocacy organisations, we would like to reiterate some general comments about the legislation, with the view to how well we think the legislation strikes the balance between the needs of the system for sustainability and accountability and the needs of individuals and families for the Scheme to be flexible, responsive and ‘user friendly’ in a day to day way if it is to have a transformative and positive impact in their lives.
Timeframe for public consultation and the missing pieces of the jigsaw
The NDIS legislation is but one part of a whole jigsaw that is essential to the success of the NDIS, and looking at the legislation in isolation without these other pieces of work has been highly problematic – it’s like only having part of the story. Specifically, the NDIS rules and the progress of the National Disability Strategy
A large caveat on support for the legislation among our members has been the timeframe between introduction of the Bill on the last day of Parliament at the end of November 2012, and the closing date of 25 January for submissions from the public for consideration by the Senate Committee on Community Affairs for this Inquiry. Feedback indicates a distinct dissatisfaction with the introduction of a long awaited and very complex document at a time when many families and service providers were preparing for Christmas, and, importantly, school holidays when consideration of the content has been difficult for many people with disability and people with family members with disability.
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As indicated earlier, the legislation has been the first opportunity for organisations like DDC and PWDWA to start informing and engaging with our membership on the detail of how the Scheme might work. The urgency of the timeframe is recognised but DDC is concerned that a lack of meaningful consultation with the legislation’s key stakeholders that gets to the heart of how the thing will work and in a rushed environment may lead to less than ideal policy development.
We anticipate with interest the consultation for development of the rules, however the absence of the rules at this point mean that people are very limited in their ability to assess aspects of their own potential involvement in the Scheme.
Given that the rules will outline the detailed operation of the Scheme, their absence has also made it difficult for more depth to be applied to any general discussion and analysis of the Bill.
Striking the right balance
DDC and PWDWA approach the introduction of the NDIS with a particular eye to ensuring that the Scheme strikes the right balance between the needs of the overall system on one hand and the individuals interacting with the Scheme in a day to day way. This means balancing things such as sustainability and accountability on one hand with accessibility and responsiveness in the lives of people with disabilities and their families in a day to day way. The NDIS must not only provide certainty and confidence for people with disabilities and their families, it must also make a real and positive difference in their lives.
DDC and PWDWA also frame their feedback through the prism of people’s lived experience of existing legislation, such as the Social Security Act, and their experience of other human service systems delivered at the national level, such as Centrelink and disability employment services as well as people’s experience of the local Western Australian disability support system and its strengths and limitations.
The proposed NDIS legislation is important because it not only establishes the framework for delivery of the NDIS but will become the final arbiter and reference point for decision making where there are tensions, challenges and conflicts as 4
the NDIS begins to be operationalised. The NDIS is a significant social policy development, and we believe it represents a significant challenge to the existing model of public administration in Australia and that there will be a need for many iterations and developments and refinements over time, and the legislation must allow for and enable these to occur.
As a significant social policy with the potential to have a profound impact in the lives of people with disabilities and their families, we would like to commend Government on the inclusion of the Objects and Principals which clearly articulate what the legislation seeks to achieve, though we would agree with colleagues that they could have a stronger emphasis on and connection to Australia’s human rights obligations. We believe that clear Objects and Principles are essential as a guide to keeping the NDIS true to its intent.
However, we believe that in some key areas the legislation is too specific and prescriptive and we are concerned that this will create a risk over time for restricting choice, control, flexibility and responsiveness in ways which might undermine the overall intent of the Scheme.
We acknowledge that some changes have been made to the Bill since the release of the Exposure Draft in 2012, where there was very clear feedback that the Bill was too strongly based on the Social Security Act which is highly prescriptive and has a very strong emphasis on compliance, but we would like to see further changes.
Specifically, we believe that Chapter 3 – Participants and their Plans contains extremely detailed and prescriptive principles, directions on planning, and instructions. We are concerned that setting such specific provisions within the legislation creates a risk that of encouraging a tick-the-box, bureaucratic process that fundamentally undermines the spirit of good planning. We believe there is a real risk that over time, this lends itself to an environment where officials point to the legislation and use the detail laid out in the Act as a mechanism for insisting that people undertake certain things, or to deny people access to certain things because they aren’t seen to be laid out in the legislation or the rules. While we acknowledge that this is not the intention of the legislation, the intention and how things become used in a day to day way are very different and people have
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much experience in a service delivery context of how this occurs. A number of other submissions have no doubt spoken to this.
Advocacy and the infrastructure supporting a successful NDIS – why is the legislation silent?
The NDIS in itself is little more than a system for increasing resources and organising them in a new and more effective way, and with a greater focus on the individuals and families. However, the NDIS alone will not have the ‘transformative’ effect that is expected if people aren’t supported to use it for best effect in their lives. The Productivity Commission report into the feasibility of the NDIS clearly indicated any reform would need to ensure this foundational infrastructure would need to be supported in the role it identified for Disability Support Organisations. Even if these things might not be directly funded through the NDIS, we believe that as an enabling piece of legislation this legislation must commit government to supporting them as part of a successful infrastructure critical to the success of the system.
This is most obvious in the failure of the legislation to include advocacy in any way in the context of the legislation. All systems require advocacy and in Australia we have not valued advocacy highly enough. There is no reason to believe that advocacy will be less necessary when the NDIS is in place. In fact in some regards advocacy may well become more important in the NDIS where people are now navigating a system that is regulated by a significant piece of legislation, where they are negotiating terms such as “reasonable and necessary” and “value for money”, and in managing the interface with general service systems and the NDIS’s expectation that they are meeting their universal service obligation.
Even if advocacy is not to be funded by the NDIS, it must still be enshrined in the in the context of a Bill which is designed to enable the promotion and provision of support and choice to people with disability. Such a reference would underline the Government’s commitment to these tenets
The legislation is also silent on the range of other supports that the Productivity Commission recognised as being important foundations to supporting people navigate the NDIS and maximising the outcomes in their lives. We recognise that such support is inferred in Chapter 2 – Assistance for people with disability. However, there is very little information about the assistance for people with
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disability and others. Again, we would like to see this legislation enable the NDIS by making a clearer commitment to enshrining those supports, many of which are likely to emerge through projects underway supported by the Practical Design Fund.
A case in point of where the failure to enshrine these kinds of foundational supports could have significant consequences for individuals is in the area of nominees, which is described in Chapter Four – Administration. We recognise that the intent of this Chapter is to provide a safeguard for people who for whatever reason are not able to represent themselves in relation to the NDIS, and we commend the government on recognising this issue and on speaking to some of the themes that are relevant here.
DDC and PWDWA believe that it should always be assumed in the first instance that people have the capacity to speak for themselves, and that people must be supported to speak for themselves and to make their own decisions. Only when it is demonstrated that they cannot should another person be given the authority to make decisions on their behalf, and that that person must be someone who knows them well and has their best interests at heart, and that the voice of the person with a disability must still have the opportunity to be heard.
For many people, this won’t happen simply and of itself, particularly for those people at the margins or with complex needs. We are concerned that without the right supports and infrastructure in place, over time the NDIS will find it increasingly difficult to engage with these people directly and that this creates a risk that nominees will be appointed with increasingly regularity over time. We believe other submissions have also spoken specifically about the nominee provisions with the view to more clearly safeguarding people’s rights, and we also believe that the rules might include more detail on this. But this is an example of some of the limitations of considering the legislation in isolation.
Confidence and Certainty
Finally, DDC and PWDWA would like to speak to two key issues in relation to confidence and certainty.
The first relates to eligibility provisions. We believe that a cornerstone of the NDIS is to provide people with significant and lifelong disabilities certainty that they will be able to access supports and services when they need them, and confidence that being eligible for supports and services mean that you are able to access them. There are two eligibility provisions that we would like to see
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addressed in the legislation that relate to this. The first is the absence of manifest eligibility criteria such as exists for the Disability Support Pension. The second is the requirement in the legislation that people begin a planning process within two weeks of submitting an access request.
While we recognise that the NDIS is about providing supports when they are needed (so if you don’t need support at a specific point in time then you don’t need the NDIS), we maintain that for many people just the knowledge that you are eligible for support when you need it, and that at least the hurdle of eligibility is covered is a significant issue. We would like to see the legislation have a notion of manifest eligibility, such as exists for the Disability Support Pension. Where people have a diagnosis that clearly meets the eligibility criteria described for the Scheme, we believe that people should be able to have their eligibility recognised so that they have the confidence of knowing they are eligible and that they should only then need to submit an access request for support when they need that. We believe that people should be able to test their eligibility against the disability requirements without having to undertake a planning process, which might not be a priority at a point in time.
Finally, we are aware of a considerable level of unease amongst some of our members about transition arrangements where they are currently accessing supports and services. A number of DDC members, for example, have adult children with very high support needs currently being supported in arrangements which they have fought long and hard to secure. These families are not certain that support arrangements and most particularly minimum funding levels will be maintained to support their support arrangements. Some of these families might well choose over time to review the support arrangements for their son or daughter, or they may not. They are concerned to ensure that in transitioning from one system to another there is no disadvantage, that they do not lose the capacity to access their existing supports or services either through changes to funding or otherwise.
We believe the legislation must validate a No disadvantage, no disruption policy to re-assure participants of their security. This will give those individuals and families certainty for the future, but would not prevent individuals and families from seeking changes to their support arrangements if they so wish.
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We look forward to ongoing consultation with Government to the effective development and implementation of the rules and more generally of the NDIS.
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