Independent Assessments Submission 270
Ngaanyatjarra Pitjantjatjara Yankunytjatjara Women’s Council
Ngaanyatjarra Pitjantjatjara Yankunytjara Women’s Council (Aboriginal Corporation)
Submission to the Parliamentary inquiry into independent assessments under the NDIS
April 2021
Summary
Current Situation
Aṉangu (Aboriginal people from the central Australian cross border region) society in remote communities has its own traditional culture, lifestyle and language. Aṉangu with disability have clearly stated that they want to continue living on their traditional country with 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). Rates of disability are at least twice those of mainstream Australia. There is poverty throughout these remote communities and there is competition for basic resources, particularly food, bedding and clothing. Poverty focusses Aṉangu (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 therapy services.
Issues with Independent assessments
The use of independent assessors is inappropriate for Aṉangu for a range of reasons. It is difficult to obtain initial diagnoses in community in the absence of specialists. There is a strong cultural and social inhibition against giving personal details to people Aṉangu don’t know and trust; Aṉangu are not going to respond fully and openly in these circumstances. It is also culturally inappropriate to ask people direct questions, particularly relating to personal matters.
Aṉangu speak English as a third or fourth language. Interpreters are not readily available, and the use of local people is not always appropriate because of privacy concerns. Aṉangu not only do not understand the language used by assessors and planners but they do not understand the concepts underlying NDIS assessments, planning and operation. In addition, there are low levels of literacy in the NPY Lands. People do not value or trust paperwork, as the culture on the Lands is oral.
The assessment tools are not specifically appropriate for Aṉangu culture, society and environment. Assessment organisations need to be culturally appropriate and informed in order to make an effective assessment. This means having specific training and support led by Aṉangu, and spending time in the NPY communities. Assessors need an in-depth knowledge of the local situation and relationships if they are to take these environmental factors into account in their assessment.
The NPY communities are geographically extremely remote. People are highly mobile which means they are often out of community and unable to be contacted. These factors are likely to add significantly to the time involved in Aṉangu with disability accessing the NDIS.
A straightforward way of challenging the results of an assessment is needed in view of the above issues.
The planning process
Aṉangu will need draft plans and budgets explained to them and the opportunity to discuss them with a trusted person in order to take part in planning discussions. Some of the basic concepts of plans, such as goals,
Supporting the dreams of young women, the hopes of mothers and the vision of grandmothers.
Independent Assessments Submission 270
are not natural for Aṉangu. In addition, most Aṉangu will consider that the draft plan is offering them definite help and money.
Conclusion and Recommendations
The use of independent assessors is not appropriate for Aṉangu from the remote NPY Lands. Access to the NDIS for Aṉangu with a disability should be via lists developed by long term providers of primary health and disability services on the Lands.
Where an allied health functional assessment is considered necessary, this should be carried out in conjunction with trusted service providers by local contractors who work regularly on the NPY Lands, have developed some understanding of Aṉangu culture and have built up good relationships with community members.
Supporting the dreams of young women, the hopes of mothers and the vision of grandmothers.
Independent Assessments Submission 270
Background
The Ngaanyatjarra Pitjantjatjara Yankunytjatjara Women’s Council 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 Aṉangu with disability and their families.
NGAANYATJARRA PITJANTJATJARA YANKUNYTJATJARA WOMEN’S COUNCIL
The NPY Lands consist of 25 very remote communities and homelands, spread across 350,000 square kilometres of semi-arid country The communities are geographically remote, and almost all are reached by unsealed roads, which are subject to closures for cultural activities and wet weather and resultant damage. The total population of the region is around 6000, with an average of around 200 in each community. All communities have limited access to goods and services, typically being served by a single store, a clinic, a school, and a community office. Regional service centres are located in Alice Springs Kalgoorlie and Port Augusta at distances of between 300 and 1500 kilometres. Few service providers operate in the Lands, either based there or on a visiting basis.
Aṉangu 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 Aṉangu (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. Aṉangu often do not understand the beneficial role of therapeutic
Supporting the dreams of young women, the hopes of mothers and the vision of grandmothers.
Independent Assessments Submission 270
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.
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 Aṉangu, whose culture is oral and based in traditional Aboriginal languages. Goals do not reflect people’s desire for access to basic needs, and often ask for 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.
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 appropriateness of independent assessments for Aṉangu with disability
The 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 independent assessments will not work in remote communities for a number of reasons. These include:
- the difficulty of pre-access and initial acceptance into the scheme.
- cultural and social inhibitions against giving personal details to people Aṉangu don’t know and trust; it is also culturally inappropriate to ask people personal questions
- Aṉangu speak English as a third or fourth language. Interpreters are not available, and the use of local people is not always appropriate as a result of privacy issues.
- A related issue is the lack of understanding not only of the language but the concepts underlying NDIS assessments, planning and operation
- the low levels of literacy in the NPY Lands; people do not trust or value paperwork
- the use of inappropriate assessment tools
- the geographical isolation of the NPY Lands
- the need for organisations to be culturally and environmentally informed in order to perform independent assessments
Pre-access
Prior to the use of lists for giving people access to the NDiS, one of the difficulties experienced by Aṉangu was 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 additionally hindered by the lack of culture- and language- appropriate tools. This will be an ongoing issue for Aṉangu looking for access to the NDIS.
Supporting the dreams of young women, the hopes of mothers and the vision of grandmothers.
Independent Assessments Submission 270
Relationships
Indigenous culture focuses on relationships, particularly with family and community members. Traditional Aṉangu society is orally based, and cultural guidelines dictate how knowledge is shared. Aṉangu are reluctant to work with, much less give personal details to, people whom they do not know and trust. Providing time ‘At the beginning of the appointment, … for the assessor and applicant to meet and to get to know each other’1 does not overcome this issue.
Aṉangu culture and society regard direct questions as rude. Questioning by people with whom Aṉangu do not have a trusting relationship, let alone the lengthy, ‘average’ three-hour interview process of the independent assessment, would be considered invasive and is likely to alienate and antagonise potential participants and their families.
As a result, the independent assessments as proposed are not culturally appropriate, safe or inclusive for Aṉangu. One of the key requirements for Aṉangu, that they need to know and trust people before engaging with them, is contrary to the basic concept of ‘independent’ assessments. Getting to know and trust people does not occur in an allocated time at the beginning of the assessment, or in repeated short visits over two or three days but is dependent on workers spending time with Aṉangu and developing a relationship with them. Independent assessors are likely to receive limited or misleading information in this situation.
Independent assessment is even more inappropriate for people with a psychosocial disability. There is a major legacy of a petrol sniffing epidemic in the NPY Lands, with high numbers of people suffering acquired brain injury and related psychosocial issues. Many such Aṉangu are insistently unwilling to talk at all to strangers, and will often not even engage with workers who have been based in community for some time. Most do not have any insight into their disability.
Language and Interpreters
Aṉangu from the NPY Lands speak local Aboriginal languages, with English as a third or fourth language. People often do not understand the language and concepts used in the NDIS. Interpreting is not a straightforward process for concepts which do not exist in Aboriginal languages. There are very few qualified interpreters for Pitjantjatjara, Ngaanyatjarra or Yankunytjatjara, despite a high demand for them on the Lands, and the NDIS does not fund the use of local people as interpreters. Should they do so, there needs to be an awareness that the interpreters do not necessarily understand some of the conceptual bases of the NDIS. This also applies to Community Connectors who are from the NPY Lands. These factors present additional barriers for people potentially engaging with NDIS services.
Qualifications of assessors
In order to perform culturally appropriate assessments, assessors not only need to have a trusting relationship with Aṉangu, they also need to have an in-depth understanding of culture and society in the NPY Lands and the way remote communities operate. This is crucial if they are to include ‘environmental factors which affect an individual’s support needs’1 in their assessments, as suggested in the NDIA consultation paper1.
The independent assessment framework published by the NDIA refers to the need to ‘capture whether the environmental factors in a person’s life are barriers or facilitators of their function.’ Assessors need to be drawn from organisations with a long term understanding of Aṉangu culture and the environmental factors, including the challenges of living in remote communities. In particular, assessing the support available to the
1 National Disability Insurance Scheme, Consultation paper: Access and Eligibility Policy with independent assessments, November 2020 | Version 1.0 | ndis.gov.au
Supporting the dreams of young women, the hopes of mothers and the vision of grandmothers.
Independent Assessments Submission 270
person by family and community requires a detailed understanding of the specific family relationships and issues in an environment where vulnerable people are open to abuse.
The NDIA proposal is that people will have a choice of assessor organisation, but as these are all unknown to Aṉangu, this is a valueless opportunity.
Assessment tools
None of the tools proposed for the assessment of people over the age of seven has been adapted or proven for remote Aboriginal communities and cultures and they are therefore inappropriate for use with Aṉangu. The use of these tools discriminates against and disadvantages Aboriginal people from the remote NPY Lands.
In addition, there is no information as to how the NDIA will utilise the independent assessment data to develop plans for potential participants and how they will take environmental and social circumstances into account.
Other logistical issues
The geographical remoteness of the communities of the NPY Lands means that it is extremely unlikely that ‘Assessor organisations will … contact the applicant within two days of accepting the referral and schedule the assessment within 10 days’1. This is another factor that disadvantages Aṉangu relative to people in other, more mainstream areas of Australia.
Partly as a consequence of the necessity to satisfy basic life needs, and partly as a result of cultural tradition, Aṉangu live in the present moment, not considering consequences or planning for the long term. They have a very mobile lifestyle, and are frequently away from their home communities. This makes finding them in community problematic, which is even more of an issue when a service provider (such as an independent assessor) has travelled to the Lands and has a limited amount of time available to find and asses people. The priorities of Aṉangu are set by their culture, and they are likely to disregard a previous appointment with a worker if family concerns indicate they should be elsewhere.
The appropriateness of the planning process utilising independent assessments.
A key feature of the proposed planning process for the scheme is the preparation of a draft budget and plan prior to the planning meeting. For a number of reasons this is inappropriate for Aṉangu. Two obvious issues are the use of English instead of Aboriginal languages and the general lack of literacy. Aṉangu need to have such documents and the implications explained to them, so that they can raise concerns, through a third party if need be. Who is going to mediate showing the plan to Aṉangu? If this is not done effectively, Aṉangu will not be in a position to consider the plan that is being offered and will be disadvantaged relative to mainstream applicants for access to the Scheme.
Aṉangu are very concrete thinkers, based in the here and now. The languages of the NPY Lands do not include words for the concepts ‘if’ and ‘or’. This makes it difficult for people to negotiate possible future needs as well as to understand that what they are being shown represents a conditional possibility, rather than a definite commitment. Aṉangu often do not understand the conditions defining expenditure from their plan. This situation is exacerbated by the high level of poverty throughout the NPY Lands, and the need for people to focus on their immediate basic needs such as food and bedding rather than long term programs or therapies.
Budgets and plans given to Aṉangu and couched in dollar terms can create issues, as the traditional practice of sharing dictates that any goods or money held by one family member will be used for the good of the family in accordance with established priorities (which may or may not include the family member). The participant is likely to be open to humbug and abuse from family members who see the potential funding and regard their immediate needs as paramount. It is more appropriate to present ‘budgets’ in terms of services which will become available through the plan.
Supporting the dreams of young women, the hopes of mothers and the vision of grandmothers.
Independent Assessments Submission 270
Because Aṉangu do not plan for the future, the whole concept of goals is foreign to them. The goals in the plans currently belonging to Aṉangu are often meaningless to Aṉangu, both conceptually and because of the complex language utilised. As a result, discussion at a planning meeting is not likely to reflect people’s desires.
It is clear from looking at the plans developed over the past years for participants, that a major factor in variation in plans is due not to functional assessments, but to the variation between different planners. People in similar situations have been given widely different plans, and there is no indication that the plan development process after assessment will avoid this pitfall.
Opportunities to review or challenge the outcomes of independent assessments;
‘Disagreeing with the results of an otherwise sound and robust independent assessment is not sufficient for the NDIA to fund another assessment. Applicants can only seek a second assessment where the assessment was not consistent with the independent assessment framework, or if the applicant has had a significant change to their functional capacity or circumstances’ ndis.gov.au Access and Eligibility Policy with independent assessments
There is no clarity about the circumstances in which a participant can ask for a re-assessment. This is a basic requirement when the outcome of the assessment informs access decisions to the NDIS, and therefore influences the life of a person with disability. For Aṉangu, given the issues outlined above in this paper, it is important that there is some straightforward path to challenge the outcome of assessments.
Conclusion and possible ways forward
The use of independent assessors to determine the functional status of potential NDIS participants is not appropriate for Aṉangu from the remote central Australian region. It is likely to lead to inaccurate assessments and to disadvantage Aṉangu relative to people in mainstream Australia. Should independent assessments be carried out for Aṉangu, there needs to be a simple mechanism for challenging the outcome when needed.
The most effective system for enabling people to access the NDIA has been the use of lists. This has been particularly effective in the APY Lands of South Australia where the department of Human Services developed a list that has been supplemented from the intimate knowledge of the region of the local clinics and other long term workers in the Lands, such as the NPY Women’s Council which has been providing disability case management on the Lands for forty years.
This mode of initial access would be appropriate for the entire NPY region and should be followed up with a face to face planning meeting which should involve, with the person’s permission, workers who have a long term and trusting relationship with the person concerned. Where an allied health functional assessment is considered necessary, this could be carried out in conjunction with trusted service providers by local contractors who work regularly on the NPY Lands, have developed some understanding of Aṉangu culture and have built up good relationships with community members.
References
Dew, Angela, Barton, Rebecca, Gilroy, John, Ryall, Lee, Lincoln, Michelle, Jensen, Heather, Flood, Vicki, Taylor, Kerry and McRae, Kim 2019, Importance of land, family and culture for a good life: remote Aboriginal people with disability and carers, Australian journal of social issues, pp. 1-22, doi: 10.1002/ajs4.96.
Ferdinand, A., Massey, L., Cullen, J. et al. Culturally competent communication in Indigenous disability assessment: a qualitative study. Int J Equity Health 20, 68 (2021). https://doi.org/10.1186/s12939-021-01402-9
Gilroy J, Lincoln M, Taylor K, et al. Walykumunu Nyinaratjaku: To live a good life. Alice Springs: Ngaanyatjarra Pitjantjatjara Yankunytjatjara Women’s Council Aboriginal Corporation; 2018.
Ryall, L., Gilroy, J., Dew, A., Lincoln, M., McRae, K., Barton, R., Flood, V., Taylor, K., Jensen, H., (2019). Tjitji Atunymankupai Walytja Tjutangku: Looking After Children with Disabilities from the NPY Lands, NPYWC: Alice Springs.
Supporting the dreams of young women, the hopes of mothers and the vision of grandmothers.