Mr Ian Holland
Secretary
Standing Committee on Community Affairs – Legislation Committee
Parliament House
Canberra ACT 2600
Email: community.affairs.sen@aph.gov.au
Inquiry into the National Disability Insurance Scheme Bill 2012
Dear Mr Holland
Thank you for the opportunity for the First Peoples Disability Network (Australia) to provide a written submission to the Senate Inquiry into the National Disability Insurance Scheme Bill 2012.
The First Peoples Disability Network (Australia) (FPDN) welcomes the introduction of the NDIS. However we remain very concerned about is successful implementation throughout Aboriginal and Torres Strait Islander communities. The fact remains that the vast majority of Aboriginal and Torres Strait Islander people with disabilities and their families remain at the periphery of the disability service system. The FPDN acknowledges that there have been some steps forward in recent years however we continue to encounter on a regular basis a high degree of unmet need. In many ways disability is a new conversation across many Aboriginal and Torres Strait Islander communities demonstrated by the fact that most Aboriginal and Torres Strait Islander people with disability do not self-identify as people with disabilities. This is a very fundamental starting point that this Bill must recognise for it to be able to make a meaningful change in the lives of Aboriginal and Torres Strait Islander people with disabilities.
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The FPDN is further concerned that the NDIS will progress haphazardly in Aboriginal and Torres Strait Islander communities at best, in a way similar to that of other major social reforms in Australia’s history. Unless their is a concerted outreach approach led by Aboriginal people with disabilities themselves taken from the very outset that is fundamentally about educating and informing Aboriginal and Torres Strait Islander people with disabilities and their families and communities about all aspects of not only the NDIS but the disability service system as a whole. To be successful this educating and informing must not be undertaken by the National Disability Insurance Agency but by Aboriginal NGO’s that have experience in the area of disability. This is because not only of the often compromised relationship between government and Aboriginal and Torres Strait Islander communities but also because change will need to occur from communities themselves. Change cannot be imposed; intervened or well meant it must be facilitated. Fundamentally we advocate for a community development and capacity building approach for the successful implementation of the NDIS in Aboriginal and Torres Strait Islander communities.
With regard our submission we are in agreement with the submission presented by the National People with Disabilities and Carers Council. For the purposes of our submission we have restricted our comments to several key areas that are likely to have the greatest impact on Aboriginal and Torres Strait Islander people with disabilities, their families and communities.
We would welcome the opportunity to appear before the Inquiry, as we believe that we have some critical information to share with the Committee. We would be available to appear at any of the scheduled hearings other than the ones scheduled for Perth. Adelaide or Canberra would be our preference if possible.
Yours sincerely
Damian Griffis
Executive Officer
First Peoples Disability Network (Australia)
The First Peoples Disability Network (Australia) is the national peak organisation representing Aboriginal and Torres Strait Islander people with disabilities, their families and carers.
The FPDN primary role is to be a strong voice of and for Aboriginal and Torres Strait Islander people with disabilities, their families and carers. We do this by providing advice to government on a range of issues that affect the lives of Aboriginal and Torres Strait Islanders with disabilities. We also seek to educate both the government and non-government sectors about the lived experience of Aboriginal and Torres Strait Islander with disabilities.
By any measure Aboriginal and Torres Strait Islanders with disabilities are amongst the most disadvantaged Australians yet the vast majority remain at the periphery of the disability service sector. This continues to occur for a range of reasons including the fact that the vast majority of Aboriginal and Torres Strait Islanders with disabilities do not identify as a person with disability. This is because in traditional language there was no comparable word for disability. In addition the vast majority of Aboriginal and Torres Strait Islanders with disabilities are reluctant to take on a further negative label particularly if they already experience discrimination based on their Aboriginality. In many ways ‘disability’ is a new conversation in many Aboriginal and Torres Strait Islander communities this is despite the high prevalence of disability (at least twice that of the general population).
In the experience of the FPDN and its members ‘disability’ tends to be discussed from impairment based perspective. For example ‘does aunty or uncle have trouble getting around’ or ‘does cousin have trouble understanding’ or ‘my brother doesn’t hear properly’. This way of describing disability is not done in an offensive way but more as a reference to the way in which that person interacts with their family and community. The FPDN believes there is much that the wider Australian community can learn from Aboriginal and Torres Strait Islander communities about the ways in which people with disability are valued members of their communities.
The FPDN is uniquely placed because of its membership structure. The First Peoples Disability Network (Australia) (FPDN) uses a federation type model for its membership. Its founding members are networks of Aboriginal people with disability from NSW, Queensland, South Australia and Victoria. Each network has as its full members Aboriginal and/or Torres Strait Islanders with disabilities or family members supporting a person with disability or any Aboriginal and/or Torres Strait Islander carer of an Aboriginal and Torres Strait Islander person with disability. This perspective is unique in that it comes directly from those that have a personal lived experience of disability.
General Recommendations
The FPDN believes that it is important that this Bill consider a number of fundamental barriers that many Aboriginal and Torres Strait Islander people with disabilities face in relation to their engagement with the NDIS. Whilst we recognise these would be difficult to specify in this Bill, they do however relate to the principles of the Bill. Some of these aspects are already argued in the National People with Disability and Carers Council submission, which the FPDN endorses. However there are particular aspects that are very relevant to Aboriginal and Torres Strait Islander people with disabilities these relate to the role of Disability Support Organisations and Local Area Coordinators. And several aspects relate to how the NDIS will be implemented by the NDIA. This submission will deal with these issues in detail, however there are some fundamental starting points that the FPDN believes are integral to the successful implementation of the NDIS in Aboriginal and Torres Strait Islander communities.
To this end the FPDN has developed a 10-point plan for the implementation of the
National Disability Insurance Scheme in Aboriginal and Torres Strait Islander
communities. The 10-point plan has been formally endorsed by the National People with Disability and Carers Council. The FPDN believes the 10-point plan provides a clear prescriptive way forward in meeting unmet need. Whilst this Bill cannot by its nature incorporate the 10 point plan the FPDN argues that the spirit of the 10 point plan is integral to the success of all aspects of the NDIS including this Bill as it relates to Aboriginal and Torres Strait Islander people with disabilities.
A key critical starting point is that the vast majority of Aboriginal and Torres Strait Islander people with disabilities do not self-identify as people with disabilities. This occurs for a range of reasons but regardless of the reason the fact remains that the vast majority of Aboriginal and Torres Strait Islander people with disabilities may consider something like the NDIS not to be relevant to them. In many ways disability is a new conversation in many communities therefore as a consequence the successful implementation of the NDIS needs to fundamentally recognise that in many ways this is starting from an absolute baseline position.
The successful implementation of the NDIS in Aboriginal and Torres Strait Islander communities will depend on a number of factors. One of the most significant being the need for change to be owned by communities themselves. Historically major social reforms such as Medicare and Medibank have seen very poor uptake particularly in the initial stages. The FPDN argues because there was very limited community buy in. That is, an imposed approach of government where literally government employees may have conducted information sessions, which would have meant a very poor response in the experience of the FPDN or a situation where those most in need would not have had access to the information. The FPDN knows from experience that changes in this area as with many other social reforms will only occur through a concerted outreach approach. Whilst it may be argued that this may be resource intensive the FPDN argues that this is not the problem of communities it is simply the fact of living in a big country. The FPDN also argues that
this concerted outreach approach must be delivered by Aboriginal NGO’s that have experience in the area of disability (of which there currently are very few). Such organisations will be the conduits for change not government. This is not to say that this will the exclusive work of Aboriginal NGO’s but they will need to be clearly identifiable in communities as the leading voice in this area. In practical terms it will be necessary for Aboriginal NGO’s to introduce the NDIA to communities but it will be considerably more effective if these introductions are done by the Aboriginal NGO’s that have experience in the area of disability. Fundamentally it will be necessary for government to let go of some authority and enable as flexible as possible implementation of the NDIS for it to be successful in Aboriginal and Torres Strait Islander communities.
The FPDN argues along the submissions of others that the human rights framework informed by the UNCRPD is the pillar on which this Bill must be built upon. The FPDN agrees with this view however would add the caveat that unfortunately the UNCRPD does not contain a specific article on Indigenous people with disability with them only being mentioned in the preamble.
Chapter 3 – Participants and their plans
The FPDN argues that this aspect of the Bill is a critical component for Aboriginal and Torres Strait Islander people with disabilities. The FPDN is concerned about the bureaucratic nature of some aspects of the Bill in this area.
Part 2, Division 2 – Preparing Participants Plans
The FPDN is of the very strong view that the preparation of participants plans from an Aboriginal and Torres Strait Islander perspective will only be successful if there is a lead role taken by Aboriginal NGO’s with experience with disability such as the FPDN as facilitators. This role must not be done by the NDIA but outsourced effectively to the Aboriginal NGO disability sector for this to be successful, this is for a range of reasons including:
The well understood difficulties government agencies can have in engaging effectively with Aboriginal communities due to the level of mistrust between Aboriginal communities and government; The ability of Aboriginal NGO’s to engage directly particularly when discussing sometime taboo and sensitive issues; Across most of Australia there is little or no history of engagement in any substantive way between government and communities around the often complex area of disability. This is a new conversation in many ways and as such needs to be facilitated by Aboriginal people themselves.
Section 37 When plan is in effect
S37(2)
The FPDN is very concerned about the overly bureaucratic nature of this section. In particular where a plan is varied the intention that the plan is then replaced. The FPDN believes that not only does this mean that the process is inherently inflexible but can envisage situations where Aboriginal people with disability and their families may simply withdraw from the scheme because they will view this part of the process as being burdensome and bureaucratic. This provision is likely to cause significant problems for Aboriginal people with disability and their families particularly those living in regional and remote parts of the country where the opportunity to have a plan varied and therefore replaced would be entirely contingent on how they can be supported to do a variation/replacement. In its current form this part of the Bill is impractical.
Division 3 – Managing the funding for supports under participants plans
General recommendations
This area of the Bill is the one that is creating the greatest concern amongst some Aboriginal communities that the FPDN has consulted with. There are several concerns that have been expressed these include:
Limited or no experience on the part of Aboriginal people with disability in managing their own funds; Limited or no experience on the part of Aboriginal families in managing funds for Aboriginal family members with disability; A lack of alternative options i.e. services that have the confidence of Aboriginal people with disability and their families to manage their funds; The practical ways in which funds may be distributed particularly in regional and remote Australia where some people may not have regular contact with a bank for example or a means to access their funds;
For example the FPDN has witnessed situations in the motor vehicle accidence insurance area where an Aboriginal person has received significant compensation payout due to catastrophic injury only for that money to ‘humbugged’ from them. This is not because of any abuse or neglect per se but more due to symptoms of poverty in that community. That is the person with disability may be viewed as being the wealthiest member of the community because of the extra funds they may access and that this must be shared with the whole community.
The FPDN argues that there must be a stand alone trial of the NDIS in Aboriginal remote, regional and urban communities to effectively test different methods in relation to the payment of NDIS amounts.
Importance of Disability Support Organisations
The role of Disability Support Organisations is fundamental to the successful implementation of the NDIS in Aboriginal and Torres Strait Islander communities. The importance of this role cannot be overstated in our view. This is because as stated earlier disability is in many ways a new conversation in Aboriginal and Torres Strait Islander communities across Australia. Many Aboriginal people with disabilities and their communities are unfamiliar with the language of the disability services system and the various labels that are often given to people. In addition many Aboriginal people with disabilities are at the periphery of the disability service system or their interactions are currently limited to HACC programs or to interactions with health services. Very few Aboriginal people with disabilities and their families have had experience with the disability employment service system or have had little or no experience of the protection systems such as anti discrimination or guardianship provisions for example. Furthermore the disability service system is overly complex and it often only takes an individual, family or community to have a bad experience and the individual, family or community will
loose confidence and no longer interact with the disability service system. In addition the disability service system in general has a long way to go in understanding the cultural needs of Aboriginal people with disability and their families and communities. The FPDN remains very concerned about the number of disability services, including some advocacy services that overstate their connection and experience working with Aboriginal people with disabilities and their families. This issue is of major concern in relation to the role of Disability Service Organisations as the FPDN is very concerned that some organisations may overstate their connection to Aboriginal communities and end up being funded to perform a role which they have no legitimacy. This is a situation that we continue to encounter across the country regrettably.
Aboriginal owned and operated DSO’s will be the most effective way of engaging with Aboriginal people with disabilities, their families and communities. This is because it is very likely over the next decade or so whilst the NDIS becomes more familiar to Aboriginal communities that the issues facing many Aboriginal people with disabilities will be complex in nature. And most Aboriginal people with disabilities will not have any significant experience in relation to their rights and entitlements. Therefore it will be critical that Aboriginal owned and operated DSO’s stand beside Aboriginal people with disabilities and support them sometimes in very involved ways until the individuals, families and communities can develop their own confidence. Fundamentally from an Aboriginal and Torres Strait Islander perspective the initial stages of the roll out of the NDIS will be an exercise in community development and capacity building.
This will be an area of the NDIS that will require significant resourcing. Whilst the FPDN recognises there may be a temptation for the NDIA to utilise existing structures such as the National Aboriginal Community Controlled Health Sector (NACCHO), this would be a serious mistake on the part of the NDIA. This is because the NACCHO has very little experience in the area of disability, still today many NACCHO health services are located in inaccessible buildings for instance. Furthermore the NDIS is not a health program in any case and the NACCHO system is already heavily burdened with a wide range of critical primary health issues.
In addition the FPDN recognises that economies of scale mean that it is very unlikely the possibility of a national Aboriginal owned and operated disability service system. There should still be aspiration to create new Aboriginal owned and operated disability services however. Given these factors the role of the FPDN and other existing Aboriginal disability NGO’s becomes more critical as they effectively stand between a growing disability service system and Aboriginal people with disabilities and their families. Furthermore such organisations have the most critical knowledge in that they are organisations of and for Aboriginal people with disabilities.
Plan Management Providers – service providers as plan managers
The FPDN cannot support the idea that service providers also act as plan managers. This is because we are very concerned that the vast majority of service providers
across Australia do not have sufficient experience in engaging with Aboriginal communities. Furthermore we believe that most Aboriginal communities would view such an approach as a very serious breach of their own self-determination. The FPDN proposes that Aboriginal NGO’s that operate as DSO’s are one appropriate alternative or the utilisation of existing guardianship structures. This is another area that requires further development via a specific trial focused on Aboriginal communities.
Chapter 4 – Administration Part 3 – Registered providers of supports
Section 70 – Registered provider of supports
The FPDN believes that this Bill provides a critical opportunity to embed a measure to ensure that registered providers demonstrate their cultural competency. Furthermore there is an opportunity to embed a compliance measure into this Bill. The FPDN argues that it is necessary to formalise such an approach because we remain concerned about the unregulated process that currently exists which effectively means that services simply have to state their culturally competencies without having to demonstrate how they provide a culturally appropriate service.