NDIA Accountability Project

Concerns regarding NDIS appropriateness for Anangu people with disability in remote communities

‹ PrevPage 1 of 6 · Source p. 1Next ›

Submission 194

Women’s Council

Ngaanyatjarra Pitjantjatjara Yankunytjatjara Women’s Council (Aboriginal Corporation)

Submission to the Parliamentary inquiry into the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill, May 2024

Background

The Ngaanyatjarra Pitjantjatjara Yankunytjatjara Women’s Council (NPYWC) is an Aboriginal led and controlled organisation whose membership is drawn from the remote NPY Lands in the Central Australian cross-border region (the Ngaanyatjarra Pitjantjatjara Yankunytjatjara Lands, or NPY Lands). The Aṉangu (Aboriginal people) of the NPY Lands are closely connected to their traditional culture, family and country. This submission focuses on concerns affecting Anangu with disability and their families.

Qihson Destrt •

       WESTERN AUSTRALIA
                                         NORTHER~ TEnlUTORY                     Simpscm
                                                                                                                        Desir!

                 -   Bor.:lttofXPVW,....•n'. Cour.dlM'fllon                                    4 M TMRU
  • NI’' \orncn•1 Cc,mdl 1n<-n.l,c,.·c(W“llnlUl1ili’l’ll …,,J 1,,,….,.,1.._nJ,
  • Ott-f!f’ l

Submission 194NPYWC

Submission to the Parliamentary enquiry into the new NDIS Bill, May 2024

Anangu with disability want to live on the Lands, with country, family and culture. This was confirmed in the research carried out by the NPYWC in conjunction with Sydney and Flinders Universities, and reported on in Walykumunu Nyinaratjaku (To Live a Good Life) and Tjitji Atunymankupai Walytja Tjutangku (Looking after children with disabilities from the NPY Lands). In that research people with disabilities were clear that they wanted to stay on the Lands. This was more important to them than the quality of care, or of the lack of services they might experience.

Poverty is endemic in the remote NPY communities, leading to competition for basic resources such as food, bedding and clothing. Lack of these basic resources reinforces the focus of Anangu (both carers and people with disability) on their immediate needs rather than investing time in things that may be of benefit in the future such as therapeutic services. Anangu often do not understand the beneficial role of therapeutic programs and as a result do not engage with them. They do not plan for the future. One of the NPY Women’s Council Directors explains, “Planning future is a risk, you know. If we plan the future now something will happen, like family passing away, and all that. That’s get, hold us down. But really, in our culture and custom we don’t really plan for the future. No, it’s something new in our system, you know. We’ve got to learn about future.” Margaret Smith, Imanpa community.

Services are basic on community, with medical and allied health specialists visiting for “fly in fly out” visits or not at all. Both ongoing therapeutic support programs and day-to-day support workers are limited or not available in most communities. Prescription and provision of assistive technology is subject to long delays, as are maintenance and repairs. Equipment that people with disabilities have is not always the most appropriate for the challenges of the remote environment. Buildings and public transport vehicles are often not disability accessible.

The National Disability Insurance Scheme (NDIS) takes little or no account of people’s lifestyles and their background. Plans are written in English, in language that is incomprehensible to Anangu, whose culture is oral and based in traditional Aboriginal languages. Goals do not reflect people’s desire for access to basic needs, and often relate to services that are unavailable in remote communities. There is excessive and complex paperwork for clients to sign. The NDIA refers to their Aboriginal and Torres Strait Islander Strategy in their consultation paper, but there is no indication in the Strategy about any way this scheme can be made appropriate for Aboriginal people with disability living in the remote central Australian desert.

The UN Convention on the Rights of People with Disabilities

The proposed National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 (the Bill) does not enshrine the full range of human rights in The UN Convention on the Rights of People with Disabilities. For instance, the Bill does not consider the needs specifically related to people living with a disability looking for employment, and neither does it cover the right of people to choose the people they will live with, an issue which has created difficulties in the current scheme for Anangu requiring Supported Independent Living.“Cherry picking” the rights to be enshrined in the operations of the NDIS in the Bill is unacceptable, and works against the purpose of the Convention to ‘promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.’ It fails to respond to the NDIS Review’s concern to ensure the NDIS experience is centred around the whole person and their disability related support needs.

The Rules

The Bill leaves the specification of many areas of operation and detail to the development of Rules which will be established by legislative instrument. However, the Minister is not obliged to co-design those rules with the

Submission 194NPYWC

Submission to the Parliamentary enquiry into the new NDIS Bill, May 2024

Page: 3.

The views of minority groups such as indigenous people living in remote communities need to be taken account of.

An area of major concern is the establishment of a list of NDIS supports. Supports which can be accessed using flexible funding need to be designed in conjunction with the disability community and take account of the unique culture and situation of groups such as Anangu living in remote central Australian communities. They also need to be clearly specified to assist participants and service providers in spending flexible funds appropriately.

Similarly it is important that the proposed ‘impairments’ be considered in conjunction with the disability community, taking into account the situation of minority groups including that of people from remote central Australian communities. The concept of defined impairments may work against a ‘whole of person’ approach to scheme access, particularly in the case of people with a number of related relevant issues.

The appropriateness of the proposed assessment process for Anangu with disability

The NPYWC expressed concerns around an earlier proposal to implement independent assessments for eligibility for the NDIS. These concerns remain.

There is minimal detail given in the Bill regarding both who will conduct the assessments and the use of a needs assessment tool. A statement in the Explanatory Memorandum indicates that the development of such a tool will involve consultation with the disability community and experts. Such consultation has not previously paid significant attention to the unique traditions and situation of groups such as Anangu. There is no requirement for co-design of the development processes specified in the Bill itself. Imposition of a uniform assessment process across the whole of Australia, not taking account of variations in people’s culture, beliefs and socio-economic environment does not offer equal access to a scheme that was originally developed to respond to the needs of every Australian.

The proposed system of assessments will not work in remote communities for a number of reasons:

  • the need for any assessment tool to be culturally and environmentally informed;
    • there are currently no tools appropriate for use with adult Anangu with disability;
  • the need for assessors to have an in-depth understanding of culture and society in the NPY Lands and the way remote communities operate;
    • to be truly effective they need to have trusting relationships with the people they assess, something that requires considerable time to develop;
  • the process is likely to increase the difficulty of pre-access and initial acceptance into the scheme because of the geographical isolation and the lack of available services;
    • where further documentation or diagnosis is requested, the lack of access to services is likely to present major difficulties;
    • Anangu live extremely mobile lifestyles, and have many cultural priorities which dictate their movements. They cannot be guaranteed to be in community when an assessor visits.
  • Anangu have strong cultural and social inhibitions against giving personal details to people they don’t know and trust; it is also culturally inappropriate to ask people personal questions;
    • Many Anangu with a psycho-social disability (commonly as a result of brain injury relating to petrol sniffing or similar) refuse to speak to any strangers or community workers at all;
  • Anangu speak English as a third or fourth language. Interpreters are not available, and the use of local people is not always appropriate because of privacy issues;

Submission 194NPYWC

Submission to the Parliamentary enquiry into the new NDIS Bill, May 2024

4.

  • A related issue is the lack of understanding for Anangu not only of the language, but of the concepts underlying NDIS assessments, planning and operation;
  • the low levels of literacy in the NPY Lands; people do not trust or value paperwork; and
  • the geographical isolation of the NPY Lands

Assessments and the subsequent allocation of funds need to respond to the individual and their situation, rather than to be allocated on the basis of a formula applied to a standard test. It has been our experience that, for example, the number of Coordination of Supports hours required by participants varies considerably between participants. The Bill needs to reinforce the concept that funding will consider the whole person in the context of his or her lifestyle and situation.

Pre-access

One of the difficulties experienced by Anangu has been obtaining proof of their disability and its permanency. There are no specialist diagnostic services on the NPY Lands, for example in relation to Acquired Brain Injury or Foetal Alcohol Syndrome. Disabilities relating to both of these factors are common on the Lands. Diagnosis of these and other conditions is further hindered by the lack of culture-and language-appropriate tools. This will be an ongoing issue for Anangu looking for access to the NDIS.

Requesting a review of the assessment process

As the Review recommended, it is important that an applicant have access to the results of the assessment prior to finalisation. This should be a normal and accepted part of the assessment process. In the case of Anangu, for the reasons outlined above, people should be able to seek advice from an appropriate advocate to assist them in understanding and responding to those results.

It is not clear whether people who disagree with the result of their assessment will be able to request a review of all or part of the assessment. This is a crucial requirement in order to empower people who are potential participants, particularly for people from a non-mainstream culture, living in a unique, remote and under-resourced situation. The right to a review of an assessment should be included in the Bill.

Early Intervention

The separation of participants into early intervention and regular participants is another grey area. This has currently not been well handled by the NDIS. In the NPY Lands there is a lack of services for early intervention, Alternative, effective interventions such as intensive therapy weeks in town have rarely been funded, despite having been showed to be extremely beneficial for the children and families concerned. Because of the geographical isolation of communities, funding needs to include support for families to bring their children into town and access effective interventions.

Flexible funding

Increasing the flexibility across categories in plans will hopefully make it easier for participants to use their plans in the way they want. This will benefit Anangu by enabling them to take advantage of opportunities that become available during the Plan year, effectively increasing choice and control over use of their funds. It is crucial to have straightforward and clear definitions of what funds can be used for. Anangu have a holistic approach to life. Consequently, many people on the NPY Lands currently find the distinction between the responsibilities of different Government streams, such as the primary health system and the NDIS, illogical and confusing. This is very disempowering.

A number of cultural and socio-economic factors determine the need for NDIS plans for people from the NPY Lands to continue to be Agency and Plan Managed. One such circumstance is the prevalent traditional practice of sharing, which dictates that any goods or money held by one family member shall be used for the good of

Submission 194NPYWC

Submission to the Parliamentary enquiry into the new NDIS Bill, May 2024

Page: 5.

the family in accordance with culturally established priorities. This would make it difficult, and often impossible for the person with a disability to be able to quarantine money they have access to under the Scheme. The situation is made more complex because Anangu have no tradition of budgeting, and generally live from day to day. In addition, because of the widespread poverty in the Lands, the participant could be open to abuse from other family members who see their needs as paramount.

Phased release of funds The Bill gives no indication of a minimum funding period. There is an assumption, borne out by the examples given, that overspend has previously occurred as a result of deliberate inappropriate expenditure. However, in our experience, Anangu plans (none of which have been self-managed) have frequently run out of funds as a result of being underfunded, a situation rarely remedied in later plans, despite being raised in reports to the NDIS. The NDIS response in this situation has been to suggest submission of a ‘change of circumstances’ form after the funds have all been spent, a process which is lengthy and often unproductive. The Bill needs to ensure that such situations can be remedied quickly and effectively.

A further concern relates to the need for participants to access emergency funds. Because circumstances can and do change for Anangu in an unpredictable way, it is crucial to have access to funds beyond the current funding period in order to maximise the usefulness of the plan. Examples of situations that have arisen previously and are likely to arise again in the future include:

  • People on respite in town have been caught out by the closure of borders and forced to stay in Alice Springs instead of returning home, at a higher cost.
  • A service provider might have the chance to travel to the Lands three times in a budgetary interval instead of an anticipated two times. Because access to service providers is limited for people in remote communities, it is important to be able to take advantage of such opportunities, which may result in ‘overspending’ the specified funding allocation.
  • People travel into Alice Springs from the Lands, or are flown in by the health system. Because of the generally limited access to service providers for people in remote communities, it is important to be able to take advantage of this time to work in an unscheduled way with providers.
  • People might experience a crisis, such as sudden homelessness, and require additional, unpredicted hours of coordination of supports or of therapist attention.
  • There is a failure of a participant’s assistive technology so that, for example, a powered wheelchair needs immediate repair or replacement, including transport, to a town centre hundreds of kilometres away, and the urgent provision of a replacement chair or a temporary move into town while repairs are effected;
  • People’s care situation changes with the death of a family member, and they need to move into town either permanently or temporarily;
  • People are scammed by dodgy service providers and are left without funds for services.

Requests for information

This Bill gives the NDIS the power to request specified ‘necessary’ information within 28 days. The consequences of not supplying the information are strict, and it is the participant’s responsibility to justify and request further time. Response time is a common issue for Anangu because of the isolation of remote communities and the lack of services available in the Lands. Anangu have limited English skills, and low levels of literacy, particularly in relation to bureaucratic processes. The significance of notifications is often not understood. In addition, Anangu live in the present moment, and their daily priorities are often defined by cultural expectations or by the need to find the next meal or a safe and warm place to sleep. All of these factors affect their ability to respond to a request for information, particularly if that request is conveyed by letter. Consideration should be given to the need to follow up such requests before responding punitively with

Submission 194NPYWC

Submission to the Parliamentary enquiry into the new NDIS Bill, May 2024

suspension of their plan. Some constraints need to be applied to the punitive powers in the Bill to ensure they are not applied indiscriminately.

Similarly, the Bill opens the way for the NDIS to respond punitively whenever funds have been spent inappropriately, regardless of mistakes, or of whether this is a first time offence. Guidance for participants regarding expenditure is suggested by the Review, but not mentioned in the Bill. A graded response, with restraints on the application of consequences would be more appropriate than the one currently outlined in the Bill, and needs to be included.

Conclusion There is very little detail given in the Bill regarding the changes to the operation of the scheme. This raises concerns for participants that the Bill will not encapsulate the spirit of the recent Review, with its emphasis on co-design and on consideration of the whole person and their disability related support needs. While it is important to move forward towards implementing change, this is too important a process to rush. At a minimum, the Bill needs to specify co-design in relation to a number of key areas left to future government development, and to take a softer, more person-centred and disability-aware approach to issues such as requests for information and budgetary planning. The Bill needs to aim at ensuring the NDIS will be appropriate for all Australians living with a disability, including Anangu living in remote communities in the centre of Australia, rather than applying a ‘uniform’ system, regardless of culture or situation.