Concerns regarding compatibility with human rights and fiscal impacts on the NDIS

National Disability Insurance Scheme Bill 2012 – Senate Standing Committee on

Community Affairs Inquiry …………………………………………………………………………… 4

Aboriginal and Torres Strait Islander Disability Network of Queensland Submission

……………………………………………………………………………………………………………….. 4

Preamble …………………………………………………………………………………………………. 4

The Role of the Network …………………………………………………………………………….. 4

The Aims of the Network ……………………………………………………………………………. 5

Introduction ………………………………………………………………………………………………. 7

Chapter 1, Part 2, Section 4 (8) …………………………………………………………………… 7

Chapter 1, Part 2, Section 4 (12) …………………………………………………………………. 7

Chapter 1, Part 2, Section 5 (d) (e) ………………………………………………………………. 7

Chapter 2 Assistance for people with disability and others ………………………………. 8

Chapter 3, Section 18 and 19 ……………………………………………………………………… 9

Chapter 3, Section 29 (1) (b) ………………………………………………………………………. 9

Chapter 3, Part 2, Division 1, Section 31 (e) ………………………………………………… 10

Chapter 3, Part 2, Division 1, Section 31 (f) …………………………………………………. 10

Chapter 3, Part 2, Division 2, Section 33 (1) ………………………………………………… 10

Chapter 3, Part 2, Division 2, Section 33 (4) ………………………………………………… 10

Chapter 3, Part 2, Division 2, Section 34 (c) ………………………………………………… 11

Chapter 3, Part 2, Division 2, Section 34 (e) ………………………………………………… 11

Chapter 3, Part 2, Division 2, Section 35 …………………………………………………….. 12

Supported Accommodation (Forced Co-tenancy) …………………………………………. 13

Early Intervention …………………………………………………………………………………….. 15

Generic services ……………………………………………………………………………………… 16

Individualised funding ………………………………………………………………………………. 17

Remote Supports …………………………………………………………………………………….. 17

People with disability who are parents ………………………………………………………… 17

Chapter 3, Part 2, Division 2, Section 38 …………………………………………………….. 18

Chapter 3, Part 2, Division 2, Section 40 …………………………………………………….. 18

Chapter 3, Part 2, Division 3, Section 44 (2) ………………………………………………… 18

Chapter 3, Part 2, Division 3, Section 46 (2) ………………………………………………… 19

Section 47 ………………………………………………………………………………………………. 19

Chapter 4, Part 2, Section 60 ……………………………………………………………………. 19 2

Section 61 ………………………………………………………………………………………………. 19

Chapter 4, Part 3, Section 72 ……………………………………………………………………. 19

Chapter 4, Part 3, Section 73 ……………………………………………………………………. 19

Chapter 4, Part 4, Section 73-77 ……………………………………………………………….. 20

Section 86 ………………………………………………………………………………………………. 22

Section 99 ………………………………………………………………………………………………. 22

Chapter 5, Part 1, Section 104 ………………………………………………………………….. 23

Chapter 5, Section 107 (3) ………………………………………………………………………… 23

Section 147 (5) (a) (b) (i) (ii) ……………………………………………………………………… 23

Section 178 and 179 ………………………………………………………………………………… 23

Statement of Compatibility with Human Rights (Explanatory Notes) ……………….. 23

National Disability Insurance Scheme Bill 2012 –

Senate Standing Committee on Community Affairs

Inquiry

Aboriginal and Torres Strait Islander Disability

Network of Queensland Submission

This response is produced using input from Aboriginal and Torres Strait Islander Disability Network of Queensland members and supporters in Brisbane and other areas of the state of Queensland.

About the Aboriginal and Torres Strait Islander Disability Network of

Queensland

Preamble

The Aboriginal and Torres Strait Islander Disability Network of Queensland

(A&TSIDNQ) is a group of Aboriginal and Torres Strait Islander people with disability, and their supporters, who gather together to yarn and share personal stories, cultural and spiritual beliefs and understandings, and to inform its members about, support, inspire and encourage community participation, contribution and access.

The importance of having such a network had been discussed for some time and the impetus to begin work on establishing our vision resulted from a gathering of Aboriginal and Torres Strait Islander people who came together in December 2005 as part of the International Day of People with Disability.

Using QDN as a model, the Aboriginal and Torres Strait Islander Disability Network of Queensland (supported by QDN) also invites interested individuals and Organisations and/or Corporations who support the Network and uphold its values, to become Supporters and Corporate members (however, neither Supporters nor Corporate members have voting rights).

The Role of the Network  To be a voice on issues impacting upon Aboriginal and Torres Strait Islander people with disability, their families, carers, and communities.

 To be a means through which Aboriginal and Torres Strait Islander people with disability can have input into the decision-making processes that impact on their lives.

 Lobby for Aboriginal and Torres Strait Islander people with disability to have ownership of projects and services delivery in their communities to ensure cultural practices and beliefs are developed, respected and honoured.

 Be a connector through which Aboriginal and Torres Strait Islander people with disability can have direct input into Government policies and practices that impact on their lives (and currently the NDIS).

The Aims of the Network  Develop better, more effective protocols and processes that will allow people to engage and express their concerns freely, so that they can utilise services and be involved in the decisions that impact on their lives.

 Link with Aboriginal and Torres Strait Islander communities across Queensland to develop awareness of people with disabilities and their place in communities of their choosing.

 Work with others to ensure that Aboriginal and Torres Strait Islander people with a disability not only have their needs met, but have their human, cultural and spiritual rights respected in culturally appropriate ways.

 Celebrate and honour Aboriginal and Torres Strait Islander cultural practices and incorporate these into a holistic vision for the inclusion of all people – addressing issues that relate specifically to people with disabilities.

People with disability who are Aboriginal and Torres Strait Islander are faced with double disadvantage, so through our membership, the Network works with communities across Queensland to change negative perceptions about disability and increase support towards culturally sensitive programs.

With the event of Kevin Rudd’s Parliamentary speech Apology to Australia’s’ Indigenous Peoples on the 13th February 2008, and the acknowledging of the laws and policies of successive Parliaments and governments that inflicted profound grief, suffering and loss on Australia’s First Peoples, the consequences of colonising and paternalistic processes which practiced the removal of Aboriginal and Torres Strait Islander children from their families, their communities and their country, caused immense pain, suffering and hurt for these Stolen Generations and their descendants, and for their families left behind. This degradation and the indignities placed on a proud people and a proud culture, has, over time, resulted in mental and physiological illnesses and ‘undiagnosed disability’, imbedded within communities and with those placed in institutions, with grandmothers and grandfathers, mothers and fathers, uncles and aunties, brothers and sisters, to produce unresolved and conflicting disadvantages, substance abuse, and deaths of those incarcerated within a foreign judicial system.

Whilst the Parliament of Australia, through respectfully requesting that this apology be received in the spirit in which it is offered as part of the healing of the nation, resolved that this new page in the history, by acknowledging the past and laying claim to the injustices, that they must never, never happen again; to harness the determination of all Australians, Indigenous and non-Indigenous, to close the gap that lies between us in life expectancy, educational achievement and economic opportunity, we are dependent on new legislations like that of the National Disability Insurance Scheme Bill as a solution to enduring problems where old approaches have failed (Rudd, K. House of Representatives Apology to Australia’s Indigenous Peoples Speech. October 13th February 2008). 5

Although the Referendum of 1967 entitled Indigenous Australians to be included on the census and in electoral calculation, the Referendum did not give Indigenous Australians the vote, and to date, neither has the Constitution of Australia protected the basic human rights of First Peoples or offer protection against racial discrimination.

Previous to the Referendum of 1967, all Aboriginal people, whether nomadic or ‘civilised’, and also all ‘half-castes’, were liable to be ‘protected’ by the Aborigines Protection Boards, and their legal status defined by Aborigines Protection Acts, of the various States, and of the Commonwealth. The Protection Acts, which operated differently in each state over successive years, gave the Board unlimited power to control the private lives of Aboriginal people, thus leaving many, for the greater part of their lives, deprived of ordinary civil legal rights and citizenship.

The A&TSIDNQ believes that, as aligned with the United Nations Declaration of the Rights of Indigenous Peoples, that as Aboriginal and Torres Strait Islander peoples and individuals, we are free and equal to all other peoples and individuals and have the right to be free from any kind of discrimination, and in the exercise of our rights, and in particular that based on recognition as Australia’s First Peoples.

In stating this, however, and as stated previously regarding the A&TSIDNQ and membership, people with disability who are Aboriginal and Torres Strait Islander are faced with double disadvantage. Hence the information provided in responses to the draft NDIS legislation aligns with the disadvantages and experiences of being an Aboriginal or Torres Strait Islander person and with the vision, mission and values to do with PWD people with disability:

 Aboriginal and Torres Strait Islander people with disability have a right to a place in the community and contributions to make to community. This is as empowered citizens who are as valued, respected, participating and welcomed as members of any dynamic and diverse society.  The place of Aboriginal and Torres Strait Islander people with disability in the community is not just about people with disability having suitable housing, employment, and/or equal opportunities in the community. The issue here is that not only do we need to be welcomed in the community as ‘Aboriginal and Torres Strait Islander people with disability’ but that we are genuinely given opportunities to contribute and actively participate in our community, without discrimination based on race.  As Aboriginal and Torres Strait Islander people do not have a word for, or acknowledge, ‘disability’, as it is seen as part of family; culturally and historically, Aboriginal and Torres Strait Islander people with disability are at the mercy of the family (and/or the institution they’re supported by if institutionalised) regards opportunities or access to community life. Hence, Aboriginal and Torres Strait Islander people with disability and their families need to be included in communities, and their individuality, talents, and stories of lived experiences of disability, be recognised and acknowledged.  Inclusion within only mainstream community for Aboriginal and Torres Strait Islander people with disability is conditional and vulnerable to withdrawal. An

example of this is “forced co-tenancy” (and Institutionalisation) where Aboriginal and Torres Strait Islander people with disability are forced to share public housing and supports with other non-Indigenous people with disability and support workers, or risk having both housing and supports withdrawn.  Many Aboriginal and Torres Strait Islander people with disability in Queensland are excluded from the most basic experiences of ordinary lives, yet alone recognition of the need to have family/extended family and community and cultural contact.  Current exclusionary practices are unacceptable and must be challenged.  These issues affect not only Aboriginal and Torres Strait Islander people with disability but the whole of the Aboriginal and Torres Strait Islander community, holistically.  The responsibility is shared. It lies within government (federal, state and local) and the community at large, to ensure that Aboriginal and Torres Strait Islander people with disability have an appropriate place, and be resourced, to belong in the community of their choice.

Introduction

The Aboriginal and Torres Strait Islander Disability Network of Queensland shares

with optimism for its members about the NDIS and the potential changes it will bring to people’s lives. The Aboriginal and Torres Strait Islander Disability Network of Queensland strongly supports the general principles of all people with disability (PWD) having the same rights as others in all types of their development.

Chapter 1, Part 2, Section 4 (8) The A&TISDNQ believes that the Objects and Principles (Chapter 1, Part 2) need to be strengthened to fully articulate the Australian obligations of the Convention on the Rights of People with Disabilities (CRPD) and those of the United Nations Declaration on the Rights of Indigenous Peoples.

The A&TISDNQ sees that the idea of “own best interest” is a critical point. Feedback from our members tells us that even the most well-meaning families can unintentionally place limitations on people with disabilities, and therefore the choices that are made about their future. The ability of the person with disability to determine their own best interests is critical, and ties in closely with issues surrounding assisted decision making and the principle detailed in Chapter 1, Part 2, Section 5 (a).

Chapter 1, Part 2, Section 4 (12) The role of families, carers and other significant persons in the lives of Aboriginal and Torres Strait Islander people with disability is not only to be acknowledged and respected, but recognition be given, nor taken away from, the cultural aspects or ‘natural’ role that the person with disability plays within a family unit. For example, where there is a large family network, the caring role will usually be shared between more than one person.

Chapter 1, Part 2, Section 5 (d) (e) In circumstances where a non-Indigenous person is acting on behalf of Aboriginal and/or Torres Strait Islander people with disability, that although first giving

opportunity for the person with disability to address and/or give voice to/about the act that’s being done on their behalf; that the cultural and linguistic circumstances of the person with disability should not only be taken into account, but that the person who may be doing the acts or things on their behalf, where possible, should consult with the person’s family/extended family (as recognised and stated in section (e)) and those that are familiar to or of the person with disability (and/or their family), those being: Aboriginal and/or Torres Strait Islander community Elders and/or Aboriginal and/or Torres Strait Islander community health workers or district health nurses.

Chapter 2 Assistance for people with disability and others The A&TSIDNQ holds the view that this chapter requires expansion to clearly articulate what people are entitled to. There is nothing in the legislation outlining what types of aids and equipment will be included in the NDIS and what types of packages of support will be available. While the A&TSIDNQ understands that individual plans will dictate what types of supports will be required, the absence of any detail regarding recognition of cultural diversity, and in this, how the various aspects of assistance for Aboriginal and Torres Strait Islander people with disability will be addressed or provided is more than concerning.

For the NDIS to truly achieve its goal of reinvigorating the disability sector, investment must go into capacity building for Aboriginal and Torres Strait Islander people with disabilities. Culturally responsive best practice recognises that Aboriginal and Torres Strait Islander people need to be treated differently, and that ‘we treat everyone the same’ is not acceptable under this approach. Disability Service Organisations must recognise this, and begin capacity building for Aboriginal and Torres Strait Islander people with disability now, as this process of educating and empowering will take time to be effective. Provision of extra choice and control for Aboriginal and Torres Strait Islander people with disabilities will only be effective if people have the knowledge, ability, and confidence to take the leap to use these new opportunities.

Dignity of Risk

With reflection on Australia’s legislative background regarding laws and policies of successive Parliaments and governments that inflicted profound grief, suffering and loss on Australia’s First Peoples, and the Protection Acts that were applied to control all aspects of Aboriginal and Torres Strait Islander people’s lives, the dignity of risk must be afforded to Aboriginal and Torres Strait Islander people with disabilities. In this, the NDIS must be implemented with a culturally responsive positive vision against the perspective that accepts that Aboriginal and Torres Strait Islander people with disabilities ‘are different’, and in this, having often never had the opportunity to manage their own lives, as such, need capacity building input before they can successfully manage to achieve what’s required. The NDIS is obliged to not only give people the opportunity, but also give the best chance of succeeding to ensure that these new possibilities become new realities (not just another unreal goal in a distant mirage).

Participants must feel reassured that they can take a risk without the fear that if something doesn’t work out as they had hoped that they will not suffer consequences for that mistake in the future.

Chapter 3, Section 18 and 19 Aboriginal and Torres Strait islander people with disabilities and their families are very likely to feel very anxious about the intake and assessment process. While some may suffer from anxiety as part of their disability, many will have had negative experiences with government in the past, and have been institutionalised, and have fears about the NDIS resulting from previous trauma (as supported by statements in the Preamble to this document relating to Kevin Rudd’s Apology to Australia’s Indigenous Peoples Speech). Aboriginal people may find it difficult to understand the language and terminology used to ask questions about their health status, literacy levels and personal hygiene and particularly questions around cognitive function. In order to reduce the stress placed on Aboriginal and Torres Strait Islander people with disability during this process, applications should be made in simple language (and or in the first language spoken by the person/family) and assessed/processed by an Aboriginal or Torres Strait Islander assessor through arranging a home visit with the family.

Another option could be that the person with disability be assisted, by someone they can trust and are familiar with, who is versed in the application process, such as an Aboriginal or Torres Strait Islander community health worker or district health nurse, to complete the application process online prior to any face-to-face contact being required. This allows choices to suit whatever the person with disability or family may feel most comfortable with. Applying online will also allow people with mobility and personal care difficulties to complete as much of their access request without the difficulties (and support requirements) associated with attending appointments. This will also give applicants a greater sense of control in the process, if on their initial face to face contact, the applicant knows they are already in the access request system.

The A&TSIDNQ believes that the assessment process must also include some critical elements:

 An access request must be able to be self-referred  Independent assessment  A diverse array of assessment tools must be available rather than a one-size fits-all approach  People with disability and families must be able to self-identify  Must be available and appropriate to the needs of people in the criminal justice system or child safety authorities.

Chapter 3, Section 29 (1) (b) The A&TSIDNQ supports a participant’s ability to stay in the NDIS while it meets their needs, regardless of age. As Aboriginal and Torres Strait Islander people have a shorter life expectancy and the earlier onset of chronic disease, there is a greater proportion of Aboriginal and Torres Strait Islander people becoming ill and needing 9

care at an earlier age. As these differences are recognised by the Commonwealth, the aged care planning for the general population is for people aged 65 years and over, as comparable for Indigenous Australian people aged 50 years and over. Hence, the A&TSIDNQ believes that when a participant turns 50 they should have the choice between staying in the NDIS or changing to the supports provided by the Department of Health and Ageing.

Chapter 3, Part 2, Division 1, Section 31 (e) The “availability to the participant of informal supports” causes great concern for the A&TISDNQ. This may be misinterpreted resulting in excessive and assumed reliance being placed on families and/or partners of people with disability. This will not facilitate equal participation in a relationship, particularly being that where there is a large family network and the caring role is shared between more than one person. The A&TSIDNQ believes that the legislation needs rewording to state that a participant’s relationship status will not influence the packages of support that they will receive. Of course, there are practical implications of living with someone that must be taken into account like all assessments of informal supports, but the legislation as it is written appears open for misinterpretation.

Chapter 3, Part 2, Division 1, Section 31 (f) The A&TSIDNQ is concerned about the principle. The plan is aimed to address the needs of the individual, which is addressed clearly in principle (h) in the same section. The statement addresses the participant’s plan “support(ing) communities to respond to the individual goals and needs of participants.” It is not the role of the individual plan to be supporting sections of the community to become more inclusive. The funding required for this type of support should not be coming out of an individual’s support package.

Chapter 3, Part 2, Division 2, Section 33 (1) When the participant requires assistance to prepare their statement of goals and aspirations, this assistance should come from a “planner”, not only an allied health professional. The A&TSIDNQ members have found that allied health professionals often have limited expectations of the person with a disability, and little or insensitive understanding or awareness of Aboriginal and Torres Strait Islander protocols and culture as a result of an underlying conservative (risk averse) approach to their clinical practice. It is recommended that the person that assists an Aboriginal or Torres Strait Islander person with disability or family with planning that they be conversed in and with Aboriginal and/or Torres Strait Islander culture and protocols.

Chapter 3, Part 2, Division 2, Section 33 (4) The A&TSIDNQ supports that there are timeframes legislated for a reasonable time to complete access requests and other functions of the agency, but has concerns that no timeframe has been placed on the approval of participant supports. The legislation states “as soon as reasonably possible” but the A&TSIDNQ believes a parameter must be placed on such a crucial period of the entire process. The 10

A&TSIDNQ believes that a 90 day maximum period would be a generous length of time that could account for unforeseen circumstances that we acknowledge may inevitably occur.

Chapter 3, Part 2, Division 2, Section 34 (c) Section 34(c) refers to the supports representing “value for money” which the A&TSIDNQ believes may present some confusion. For some, a support may be absolutely mandatory and therefore is required at any cost, making the “value for money” phrase inappropriate and misinterpreted. Clarification and examples of “value for money” should be provided in the rules as this is some of the specific information that is most concerning to future participants.

A&TSIDNQ believes the definition of “reasonable and necessary supports” requires further explanation. People with disabilities are concerned about this area of the legislation as this will have the most tangible impact on their lives. A&TSIDNQ understands that the rules will detail these issues further, but without this sort of detail, people are left feeling uneasy about the NDIS’s effectiveness as a whole.

A&TSIDNQ believes that an additional criterion should read “(i) reasonable and necessary supports for people with disability will align with the expectations of other Australian citizens”. This would provide a clearer definition of what is reasonable and necessary.

A good example of this is one that a member of A&TSIDNQ raised about showering, in that, not only should a person with a disability be entitled to the supports required for a daily shower at the time of their choosing, but that they also would like to be able to shower a second time in a day, on occasions when, for example, due to unexpected extreme heat weather conditions as recently experienced throughout Australia. Many people with disability living in independent living or with family don’t have the luxury of air conditioned premises, and this is a clear example of where an application of the “expectations of other Australian citizens” test would clarify that. Indeed, this is a reasonable request for such support. A&TSIDNQ believes that this will provide clarity to those writing the rules, and also the CEO, in their application of the rules.

Chapter 3, Part 2, Division 2, Section 34 (e) In taking into account the funding or provision of the support ‘of what is reasonable to expect families, carers, informal networks and the community to provide’ regarding Aboriginal and Torres Strait Islander people with disabilities and their families, needs to acknowledge and recognise the disadvantages experienced by Aboriginal and Torres Strait Islander people regarding ‘what is reasonable to expect’. In this, things need to be considered such as availability of or access to family transport. Hence this may require extra support to allow participants to fully engage in the community, cultural and spiritual aspects of their life. In alignment with the “expectations of other Australian citizens”, it would be reasonable for an Aboriginal and Torres Strait

Islander person to use supports on a regular basis to access a community and or other gatherings (such as funerals), that will keep them socially, culturally and spiritually connected.

Chapter 3, Part 2, Division 2, Section 35 The rules of the NDIS are the most relevant section of the legislation in terms of its practical implications on the lives of people with a disability. It is crucial that the rules must not be used as a way of diluting the power of the legislation and in turn reduce the effective entitlement of people with disabilities. The A&TSIDNQ is concerned that there is nothing in the legislation to safeguard changes in the rules to suit the economic climate of the time. Safeguards must be put in place to ensure that any changes that may occur in the rules are subject to rigorous debate and consultation, with the same attention that the initial rules will be, and already have been afforded.

A&TSIDNQ is gravely concerned about this section of the legislation, particularly Sections 35(2) and 35(3). The provision of supports (both reasonable and necessary, and general supports) with criteria regarding the “manner in which the supports will be funded and by whom the supports so funded are to be provided” leaves open the possibility that funding could be attached to specific service providers (block funding). The A&TSIDQN believes that the only purposes where block funding is appropriate are:

 To build the capacity of people with disabilities (individually and in groups)  To provide random, “ad hoc” services to people with disabilities who don’t have packages of support, but without this support will end in crisis situations (eg homeless, incarcerated, or hospitalised)  To fund emergency respite or support  To assist when a family member providing informal support is ill or absent  To support a person to attend one off cultural, spiritual, or ceremonial events  To provide training and support on an intermittent basis for the adoption and ongoing use of new technology, aids and equipment  To relieve a primary carer (or carers) to allow the carer(s) to lead a normal life  To provide support for participants to access legal support, tenancy maintenance, domestic violence issues, custody periods (child access support)  To provide support for participants in hospital when they live in group homes that have no flexibility in their care arrangements  Education of the community when people with complex behaviour or mental health disability are re-entering into community life.

Page 5 of the Statement of Compatibility with Human Rights (Explanatory Memorandum) outlines some of the general principles of the NDIS. The fifth of these states that:

“People with disability should have the same right as other members of Australian society to be able to determine their own best interests, including the right to exercise informed choice and engage as equal partners in decisions that will affect their lives, to the full extent of their capacity.”

Block funding of individuals’ packages of support is a scary proposition for Aboriginal and Torres Strait Islander people with disability who for too long have had their funding attached to a service provider that they haven’t been happy with. This has been a breach of their rights to “exercise informed choice” about their lives. This must not continue in the future. People with disabilities see the NDIS as a turning point in their lives, with the separation of their support package from an allocated service provider, being the catalyst for their optimism. Aboriginal and Torres Strait Islander people with disabilities must not be locked into packages of support from nominated service providers as this will stifle any benefits that a competitive market can provide. Surely, if Aboriginal and Torres Strait Islander people with disabilities have the ability to seek different possibilities in their types of support (and/or be provided with a choice to access more culturally appropriate support), this will encourage a more flexible marketplace, with service providers encouraged by market forces to satisfy their clients. This could also build capacity and confidence within Aboriginal and Torres Strait Islander clients (and communities), and be the catalyst to provide better and appropriate services for people with disabilities, and better lives holistically for people with disability.

Supported Accommodation (Forced Co‐tenancy)

The most powerful example of the perils of having support packages linked with specific service providers (Block funding) lies in the supported accommodation sector.

For as long as individual’s personal care support funding is linked with an allocated place of accommodation, Australian’s with disability will not be afforded their basic rights - rights that are stipulated in Article 19 (a) of the CRPD of which the Australian Government is a signatory.

Article 19 of the Convention of Rights for People with a Disability (CRPD) states that

“States Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

(a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

People with disabilities will not have a real choice to move if they know that means they cannot eat, go to the toilet, and have a shower as a result. As alarmist as this sounds, that is the current reality. When the productivity commission report stated that the system is “unfair”, this aspect is a prime example. Forced co-tenancy sounds like a bad idea from the outside looking in, and as one looks more closely to the centre, the picture becomes increasingly grim.

The current system of funding arrangements for accommodation and personal care must be separated, so that people with disabilities can choose their place of residence without having to worry about if they can access toilet facilities when they get there.

In saying this, group living is not necessarily opposed as it’s acknowledged that many people with disability want to live in a shared accommodation setting for a variety of reasons. But in comparison to others, for example university students, they have the right to choose who they are prepared to live with when in shared accommodation, and so too should people with disabilities have that freedom.

Article 3 of the CRPD states that non-discrimination is a general principle to all rights in CRPD. Given that only people with disability in Australia are faced with their ability to have their personal care needs met, entwined with their place of residence, the NDIS must take steps to address this indirect form of discrimination. The legislation must ensure that this part of the system is changed.

The A&TSIDNQ believes that the right to choose who you live with (or don’t live with) is a non-negotiable stance for Aboriginal and Torres Strait Islander people with disability, that should not, and cannot, be justified on financial or mainstream grounds.

Aboriginal and Torres Strait Islander people with disability need to have the same tenancy rights as other members of society. As stated in Article 23 of the United Nations Declaration on the Rights of Indigenous Peoples:

Indigenous peoples have the right to determine and develop priorities and strategies for exercising their right to development. In particular, indigenous peoples have the right to be actively involved in developing and determining health, housing and other economic and social programmes affecting them and, as far as possible, to administer such programmes through their own institutions.

Currently, people with disability in supported accommodation are not protected by the Residential Tenancy Agreement, yet all other Australians have the choice and capacity to live with who they wish. When people are faced with the unfortunate situation of not wanting to live with another individual, they have the resources and right to move on. Even if they are locked into a financial contract, there are still ways for ordinary citizens to move away, even if it means there will be some financial loss as a result of their decision. 14

Aboriginal and Torres Strait Islander people with disability, who are reliant on their formal supports to have their personal care needs met, currently do not have this right (or to live in an environment that solely supports Aboriginal and Torres Strait Islander inclusion). As stated in Article 21 of the United Nations Declaration on the Rights of Indigenous Peoples:

Indigenous peoples have the right, without discrimination, to the improvement of their economic and social conditions, including, inter alia, in the areas of education, employment, vocational training and retraining, housing, sanitation, health and social security.

While technically people with disability can leave their house, it comes at a cost, a cost that all citizens would agree to be unreasonable – the loss of their support that allows them to eat, go to the toilet and have a shower (and for many may lead to homelessness or incarceration!).

Early Intervention

Every small milestone achieved by a person with disability makes a big difference for the rest of their lives. Each acquisition of a functional skill, irrespective of how minor, reduces the workload on families. These sometimes small gains may be the difference between families being able to cope and not being able to manage in the long term. Activities of Daily Living such as toileting, eating, showering, are critical. The power of mobility cannot be underestimated. Early intervention that can facilitate a participant developing their skills to become independently mobile, whether by walking, self-propelling a wheelchair, or driving a power wheelchair, opens up opportunities for that person for the rest of their lives. Some participants may require specific skills training such as being able to behave appropriately in public places. Investment in all of these skills will pay great dividends both individually and for the NDIS in a fiscal sense.

Early intervention into communication will help the participant obtain the care that they want for the rest of their lives. Investment in communication strategies, training and devices is a key component in the participant’s overall outcome. The ability to make a yes/no choice will make a carer’s role far easier and far less stressful. Communication is also the cornerstone of literacy and therefore education. This will in turn have a massive impact on the participant’s productivity in an economic sense in the future.

Surgery and specialist treatment is another avenue towards more sustainable care. If surgical intervention will allow a child to be able to stand, this has massive implications for carers in terms of toileting, showering and dressing. Investments in this way will make the role of caring far easier in a time sense and also in a physical sense.

Early intervention must have a strong research base as often parents of children with disabilities, in times of desperation, seek out alternative modalities with limited

research supporting their efficacy. With the NDIS making a welcome shift towards early intervention, there is a risk of fraudulent operators attempting to take some of the NDIS spend on early intervention. The A&TSIDNQ believes that an Aboriginal and Torres Strait Islander advisory section within the public and private health insurance sector would be an appropriate guide in determining what treatment modalities should be included in the options for early intervention.

Early intervention to assist Aboriginal and Torres Strait Islander people with disability will have positive effects across all areas of society. With approximately 75% of people in the criminal justice system having an intellectual or psychiatric disability, early intervention is likely to have benefits for individuals, and the community at large, in the future. This strengthens the argument for the need to invest in our people with disabilities for the good of each individual, and the entire community.

It is particularly important to ensure that children who are in Child Protection have access to support in terms of early intervention. We know that large numbers of Aboriginal and Torres Strait Islander children, who are in this particular cohort of NDIS participants, need access to members of their immediate family, and where this is not possible or appropriate, then appropriate lengths need to be taken to ensure children are placed in the care of, or supported to connect with, extended family. This needs to be assisted by access to identified Aboriginal Torres Strait Islander agencies (and/or community organisations) to manage and support the foster and kinship care, and maintenance of contact with extended family and culture.

Generic services Generic services, such as cleaning, ironing, household maintenance, or even a nanny to enable parents to return to work, were often determined to be outside of the scope of funding guidelines. Yet, these services, if offered to people with disability, are far more economically efficient when compared to disability-specific services. Aboriginal and Torres Strait Islander people with disability believe there is a need for a multi-focus approach to service delivery. Only then will people with disability be able to truly choose a service model or combination of service models that meet their needs. As such, the A&TSIDNQ believes that these generic services should be included as reasonable and necessary support options. A&TSIDNQ also holds the belief that these generic services needn’t be registered as a service provider. It is crucial to the potency of the NDIS, that participants are not limited to a menu of service providers that are registered with the NDIS.

As part of the participant’s plan, the portion of the package of support that will be spent on generic services (non-registered service provider) can be determined. The capacity of the participant must be taken into account in determining the level of safeguards required for each individual when accessing services. This will safeguard the vulnerability of people with reduced capacity, while also providing

flexibility that the NDIS is designed to create, by allowing people with high capacity a greater array of services at their disposal.

Individualised funding Along with this choice, people with disability must be able to easily transition from one service to another. Funding and accountability processes need to be assigned to the person and their vision for a good life. The satisfaction of the person with disability, how they achieve their life aspirations, and how the service responds to them as individuals, must be linked to accountability processes.

A service that has streamlined processes but which is restrictive upon those for whom it is there to service, must be seriously questioned. New accountability measures focussed on the person should avoid this.

Remote Supports

A&TSIDNQ members believe that Aboriginal and Torres Strait Islander participants living in remote areas will require specific support. It is recommended that information to do with accessing the NDIS and social welfare advice should be available for Aboriginal and Torres Strait Islander people with disability in remote communities, either as individuals and/or through community consultation. It’s also recommended that this needs to be delivered in accordance with the protocol issues in the particular area, and by those that individuals and families are familiar with, such as District Health Nurses, HACC Respite service providers and Australia Inland Mission (AIM) etc.

The need to cater for extra travel requirements and the use of generic supports becomes even more critical in remote areas, where the service provider options are limited.

In this, there will also need to be recognition of, and special provisions in the NDIS Rules to enable Aboriginal and Torres Strait Islander people with disability in rural or remote areas to employ locals or family members if there is no service provision or if the service provider does not meet their needs. Capacity building strategies and training incentives would also need to be considered to support integrity and successful delivery.

People with disability who are parents Article 23 of the Convention of Rights for People with Disabilities states that:

(a)The right of all persons with disabilities who are of marriageable age to marry and to found a family on the basis of free and full consent of the intending spouses is recognized;

(b) The rights of persons with disabilities to decide freely and responsibly on the number and spacing of their children and to have access to age-appropriate

information, reproductive and family planning education are recognized, and the means necessary to enable them to exercise these rights are provided;

People with disability may require support to fulfil their family responsibility as a parent. Packages of support must cater for the participant’s role as a parent themselves.

In this, it must be recognised and acknowledged, as stated in the Preamble section of this document, that the colonising and paternalistic processes which practiced the removal of Aboriginal and Torres Strait Islander children from their families, their communities and their country; and the immense pain, suffering and hurt caused for these Stolen Generations and their descendants, and for their families left behind, is still etched into the psych of Aboriginal and Torres Strait Islander people, and particularly for parents. Hence, an innate distrust regards government support for Aboriginal or Torres Strait Islander participants in their role as a parent, is inevitable.

Chapter 3, Part 2, Division 2, Section 38 All plans and documentation for Aboriginal and Torres Strait Islander participants must be made fully accessible, in easy to read/plain English formats and/or in the first language spoken by the participant. The great diversity of Aboriginal and Torres Strait Islander peoples’ regards protocols and language needs to recognised and acknowledged regards this.

Chapter 3, Part 2, Division 2, Section 40 The requirement for people with disability to notify the agency if the participant is leaving the country for longer than six weeks is too onerous. The A&TSIDNQ sees this as an additional immigration exit requirement that is not required of other members of society. This notification to the agency should not have to go as high as the CEO. This should be done in a negotiation between the participant and the agency if the participant is self-managing their support. Alternatively, this negotiation should only be required between the participant and the service provider if the participant is self-directing their support, or are using a service provider to manage their supports.

A&TSIDQN believes that authorisation by the CEO should only be required if the participant will be leaving the country for a more extended period, such as, 12 weeks.

Chapter 3, Part 2, Division 3, Section 44 (2) While the A&TSIDNQ acknowledges the need for this part of the legislation, it does create concern for members. It is important that this section is not used to discriminate against Aboriginal and Torres Strait Islander people with specific disabilities or from a specific demographic.

Chapter 3, Part 2, Division 3, Section 46 (2) The need for accountability is acknowledged by the A&TSIDNQ. However, members see this area requiring significant capacity building for Aboriginal and Torres Strait Islander NDIS participants. Many participants will have no experience of record keeping prior to the NDIS. This may pose a challenge for some but should not be used as a reason to limit participant’s ability to have more control over their packages of support. The A&TSIDNQ believes that the record keeping practices must be standardised and written so as to be easily understood, and that participants can become familiar with the expectations and with the assistance of staff (by those who are familiar to and/or with the participant), and with templates and an interactive portal being used, the process can be achievable, and over time, less stressful than in the learning phase, and that support be continued at the request of a participant.

Section 47 It is important that participants are able to easily and efficiently make changes to their plan. When a change of circumstance or goal change occurs, the participant should be able to make a quick call and set the process in motion for any modification to the plan. A simple process is crucial so that participants feel that things can change without it potentially being a massive overhaul of their entitlements and lives.

Chapter 4, Part 2, Section 60 This process needs to be accessible for all people with disabilities and needs to be a free service.

Section 61 Service Providers must honour this legislation by providing to their staff, only the information that is required for the services to be delivered. Often extra personal information about a person that is not relevant (or that’s seen to be shared as intentionally good or in the best interests of the participant) is passed on from service providers and this is not acceptable practice.

Chapter 4, Part 3, Section 72 The A&TSIDNQ believes that service providers must adhere to the rules and that these must be strongly enforced by the CEO.

Chapter 4, Part 3, Section 73 An inverse relationship must exist between the capacity of the participant and the level of safeguards required to protect the individual. This capacity must be assessed to determine the level of safeguards that are required.

Participants with very high capacity do not require support workers with formal training as they are able to provide specific training and tailoring of the supports in an “on the job” fashion.

The level of safeguards required for Aboriginal and Torres Strait Islander participants must have flexibility built into it. The assessment must establish the capacity of the individual and therefore their level of vulnerability in the community. The A&TSIDNQ believes these principles must be taken into account when writing and administering the rules for service providers:

 Level of screening should align with the capacity of the participant (i.e. staff working with people with impaired decision making will need more screening than staff working with people with higher capacity). It could be that 20% of staff only require minimal screening, 60% might require moderate screening because of the vulnerabilities of the participant, and 20% might require high level screening with regular reviews because of the extreme vulnerability of the participant.

 Level of training for service provider employees must be mandated to include Aboriginal and Torres Strait Islander cultural awareness training (and to regularly evaluate and update) for all support workers and staff, and to be delivered by an Aboriginal and Torres Strait Islander approved cultural awareness provider known and/or suited to the relevant sector of service provision. This needs to align with the capacity and needs or requests of Aboriginal and Torres Strait Islander participants with disability (and where applicable, include consultation with their family), as this will ensure towards harmonious relations and supports the cultural integrity of all members in the workplace, and continuity regarding communication and information across all sectors.

 Cultural awareness training must also be provided to all support workers and staff regarding participants from CALD (culturally and linguistically diverse) speaking backgrounds and for those from LGBT (Lesbian, Gay, Bisexual, Transgender, Intergender) backgrounds.

 Mandatory minimal training on purpose of NDIS and values based on rights of people with disability. It could be that 20% of staff will need basic training on WH&S and safe manual handling techniques, 60% will need training in more complex disability support work including communication and working with vulnerable people, 20% will need a degree, or similar qualifications, to meet support needs of people with complex disability, impaired decision making and/or challenging behaviour.

Chapter 4, Part 4, Section 73‐77 While Australia has programs in place to protect children against family violence, and laws against assault, it remains lawful for parents in all States and Territories to use reasonable corporal punishment to discipline their children. Hence this raises concerns that the aspirations and goals regarding Part 4 Children, may more closely

reflect those of the parent, or nominated person who is involved in the plan, than those of the child.

In this, the A&TSIDNQ believes that with regard to Aboriginal and Torres Strait Islander children with disability and those in care, that the legislation be aligned with the recommendations made in the Human Rights Convention into the Rights of the Child, in particular new recommendations suggested in 2.General Principles, 3.Civil rights and freedoms, 4.Family environment and alternative care, and in particular 5.Basic health and welfare regarding children with disabilities. This then reinforces and allows the CEO to determine if the plan is truly for the betterment of the child with disability, or the family (or the person who has been nominated parental responsibility).

A&TSIDNQ members have expressed concern that their parents (or those taking responsibility for their care within institutions or foster parents) in the past (some with the best of intentions) had been too limited in their aspirations for the child, and supported a deficit-based mindset that they have been familiar with during their experiences in the medical model. Where foster families of Aboriginal and Torres Strait Islander children with disability are not clear/ or lack a clear vision for social inclusion and community involvement, they need to be supported (forced) to access appropriate services that will assist them.

A transition of responsibility must be undertaken in the planning stages of the NDIS. This transition must be made culturally responsive as the child shows signs of independence and the desire to become more actively engaged in their own management of supports. The process should not result in a participant turning 18 and being left with a seemingly overwhelming transition into adulthood.

Updates to plans will be more frequent during childhood. Offers to updates plans should be provided in an effort to encourage to parents to consider the changes that transitional stages in life take. These stages may include:

 Preparation for and start of school  Transition from primary to secondary school  Completion of secondary school  Preparation into and entering the workforce  Leaving home  Retirement

Often parents of children with physical disabilities are faced with very complex and difficult decisions regarding surgery options. In many cases, the parents themselves have limited health literacy and find the decisions very stressful. There are many factors to consider, regarding outcomes and post-operative management (which is often lengthy and rigorous). Parents would benefit greatly from the option of support in the form of a “Medical Appointment Chaperone”. This must be someone who

knows the child and living circumstances, and also comes from a medical background. The carers could discuss their options with someone during and after medical appointments to fully explore how they will handle all the issues that would arise if they follow each of their options. In this way, parents aren’t left having to make a quick life-changing decision with their Specialist without being able to ask more clarifying questions that they hadn’t thought of in the consultation.

Section 86 Decisions regarding the appointment of nominees are absolutely critical in the overall outcome of the participant. It is the A&TSIDNQ’s belief that decisions where the CEO appoints a nominee for an Aboriginal or Torres Strait Islander participant, that the decision should be made in consultation with the participant’s family, and if not possible or appropriate, to be in consultation with a panel that includes Aboriginal and Torres Strait Islander Elders and community members (where appropriate), and those who have gathered information from a network of people involved in the participant’s life. It is also important to not just speak to the participant’s General Practitioner, but also other stakeholders such as schools, existing service providers etc. This will give the panel a rounded picture of the social setting and an insight into how the participant’s life functions through good times and bad. The ultimate aim is to select a nominee that has the best interests of the participant at heart and has demonstrated a deep level of care and understanding for the participant’s needs.

Section 99 There is no section in the draft legislation that requires decision makers to provide reasons on a review of a decision. The A&TSIDNQ believes that explanations of decisions are crucial for Aboriginal and Torres Strait Islander people with disability (and involved family members) to be able to fully understand the reality of their situations. Without explanations for the decision, individuals can believe that there is no hope of changing their situation; alternatively they can waste their time and public resources on an appeal that has no prospects. The provision of reasons also allows advocates assisting the individual to appeal to reasonably assess the merits of the case and provide advice.

There should also be easy access to appropriate independent advice, advocacy and representation. Community Legal Centres and A&TSI Legal Services providing these services should be funded adequately to not only provide services to individuals, but also to contribute to systemic advocacy and review of the new NDIS structures (as outlined in section 208 of the draft bill) to ensure the system is protecting people’s rights. If this is not going to be funded by the NDIA it must be funded by another Department within the Federal or State Governments. To not protect the rights of this vulnerable client group is unacceptable.

Chapter 5, Part 1, Section 104 If the CEO imposes a requirement to pursue compensation, the agency must support the participant to achieve this. This will require a litigation arm of the agency and must come at no cost to the participant.

While the action is pending, an eligible person with disability should be included in the NDIS, with the legal action being the agency’s responsibility to act on the person’s behalf.

Chapter 5, Section 107 (3) The Agency should only be able to recover costs relating to the support of an individual, not for the loss of income or for pain and suffering and other areas of compensation.

Section 147 (5) (a) (b) (i) (ii) The A&TSIDNQ supports the Advisory Council providing advice to the Board. The A&TSIDNQ also believes that the majority of the Advisory Council should be people with disabilities, including Aboriginal and Torres Strait Islander people with disability and carers as representative of the diversity of Australia’s First Peoples.

Section 178 and 179 A&TSIDNQ sees that the legislation exposes the NDIS to potential changes in fiscal policy which may erode the potency of the NDIS.

Statement of Compatibility with Human Rights (Explanatory Notes) A&TSIDNQ is gravely concerned about Page 9 Paragraph 2 of the Statement of Compatibility with Human Rights, that states,

“Differential treatment will not constitute discrimination if the differences in treatment are aimed at achieving a legitimate purpose and are reasonable and proportional to this purpose.”

A&TSIDNQ is worried that a “legitimate purpose” may be to “balance the budget” which may see discrimination allowed on the grounds that the costs of not discriminating is “(un)reasonable and (dis)proportionate to this purpose.”

A&TSIDNQ believes that the right to choose who you live with (or don’t live with) is a non-negotiable stance for people with disabilities, that should not, and cannot, be justified on financial grounds.