Lack of supports affecting Anangu with disability and their families | External submission

Parliamentary Joint Standing Committee on the National Disability Insurance Scheme: Inquiry into the Current scheme implementation and forecasting for the NDIS

Submission from NPY Women’s Council

February 2022

NPYWC: the organisation

The Ngaanyatjarra Pitjantjatjara Yankunytjatjara Women’s Council (Aboriginal Corporation) 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 focusses on concerns affecting Anangu with disability and their families.

Background

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 the 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.

Anangu (Aboriginal people from the central Australian cross border region) society in remote communities has its own traditional culture, lifestyle and language. Anangu with disability have clearly stated that they want to continue living on their traditional country with family and culture. Rates of disability are at least twice those of mainstream Australia. Poverty is endemic throughout these remote communities and there is competition for basic resources, particularly food, bedding and clothing. Poverty focusses Anangu (both carers and people with disability) on their immediate needs rather than allowing them to invest time in things that may be of benefit in the future such as therapeutic services. Many Anangu do not understand the beneficial role of therapeutic programs and as a result do not prioritise or engage with them comfortably.

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 the lack of services they might experience.

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 is equipment 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.

There are a number of key factors necessary for Anangu to engage with workers and service provider organizations. It is important for Anangu that meetings are held face to face, rather than over the phone or via other technological means. They also need to have the chance to get to know people from the organization- Anangu engage with people whom they know and trust. This means that when they meet a worker who is different from the person they have previously encountered, they need to get to know and trust that person. It is important for Anangu that they feel heard.

The availability of tier 2 supports

With the advent of the NDIS, funding previously available for assisting people with a full range of disabilities, including those who are not eligible for assistance through the NDIS, has been withdrawn. As a disability provider prior to the NDIS, NPYWC was funded to assist all Anangu with disabilities. This funding has now been withdrawn in two of the three jurisdictions in which NPYWC operates. From July 2022, this will be the case in all three States in the Central Australian region where NPYWC works.

The lack of supports in the remote Central Australian communities affects both NDIS participants and those not eligible for NDIS assistance.

There are multiple issues that make it difficult for service providers to work in remote communities. The isolation of the communities and the lack of infrastructure limits the ability of workers to visit communities and also drives up the costs of offering services. There is no regular public transport between communities. This means that organisations have to hire or lease appropriate four-wheel drive vehicles. The variable condition of the dirt roads increases the maintenance costs of vehicles and means that workers need appropriate driver training. Accommodation is limited in the Lands, with service providers sometimes unable

to find a place for their workers to sleep. Worker safety is another issue. Ensuring staff have access to good support as well as accommodation and vehicles is crucial for organisations working in remote communities

The majority of organisations operate on a fly in fly out/drive in drive out basis, visiting infrequently, and spending limited time in communities. Staffing is an issue for all service providers working remote, and frequent changes of staff result in increased training costs, lack of culturally appropriate ways of working, and infrequent or effectively non-existent services.

Anangu living within their traditional culture, which focusses on social interaction, require trusting relationships with service providers in order to engage with services. Often people are focussed on obtaining the basics of life- a meal, bedding and somewhere safe to stay, rather than seeking assistance with a disability. They require ongoing support, and this support may ultimately become capacity building.

The ILC

ILC projects in the remote NPY Lands have made a start towards building the capacity of people in remote communities, but because they are short term, their benefit is not long-lasting. Capacity building in the remote NPY Lands is a process which requires long term support in the context of ongoing relationships with Anangu and communities. Offering people workshops may provide a stepping off point, but these need to be reinforced with continuing support. For instance, Anangu hold a very different view of mental health issues from mainstream Australians, and support for people with mental health issues living in the Lands needs to be culturally acceptable, available on an ongoing basis and through these processes to build the capacity of their families and support people.

The projects funded by the program are piecemeal and short term and do not develop and fund consistent, ongoing support services.

The need for a disability support workforce presents a prime example of this situation. While several projects have taken initial steps towards developing a local workforce in the remote NPY Lands, there is then no funding for the ongoing support of new disability workers. There are many wide-ranging barriers to the employment of local people as carers and support workers. These include a lack of acculturation into mainstream employment models, concern around payback if the person being cared for becomes sick or dies, high levels of mobility, prioritisation of family and cultural obligations over employment, the difficulty of obtaining police checks and driving licences, and concerns about privacy on the part of the family of the person with a disability. There have been initial projects in each of the three States of the NPY Lands to start developing such a workforce, but there has been no follow-up funding. Employing community members as personal care workers is a long-term process. Building peoples’ capacity and capability to undertake disability support work requires gradual and well- supported process. It entails structured training and long-term support and supervision, as well as a high degree of flexibility to cater for some of the cultural issues likely to arise.

The interface of the NDIS with other services

There is a lack of consistency and clarity regarding the interaction of NDIS services with those funded in other areas, particularly aged care, education and primary health. Participants bear the brunt of this, sometimes disastrously. Anangu have a holistic approach to life. Consequently, many people on the NPY Lands 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.

One of the issues for therapists visiting remote communities is the difficulty of contacting participants in order to work with them. Families are extremely transient, and often hard to find in community. Facilities such as workspaces do not exist. Working with participants, particularly young people and children depends on the goodwill of families and local services, many of which are themselves time-poor. This situation requires flexibility and cooperation between services.

Aged Care

NPYWC works with a number of NDIS Participants who reside in Aged Care facilities. In a recent instance a woman living in an aged care service in Alice Springs has been denied community access because of the institution’s covid-related policy. Further, this woman was working towards moving into a more acceptable form of accommodation, and this process has now come to a halt. This has been extremely detrimental to her mental health.

Education

For service providers visiting communities in the remote NPY Lands, working with the schools is vital for visiting children who are NDIS participants, as these clients are hard to find in community outside school. It is also important to observe how children operate in school- their interactions with their peers and their teachers, and the triumphs, issues and difficulties that come up for them during the day. Interacting with the schools in this way is very much driven by the personalities of individual staff members. Some are grateful for therapists being involved with the child and pleased to consult with them, while others refuse therapists access, citing disruption to the class room or time pressures as the reason for their decision.

A different issue occurs for some children who are seen intermittently by Department of Education disability specialists in that they then have two therapeutic programs to follow. A boy with communication issues from one particular community had spent time in a hospital in the city away from community and been sent home with a third therapeutic program. This was confusing for the child, the school and above all for his carer who was struggling to have the child adhere to any program at all.

Primary Health

An area where there is an urgent need for a clear delineation of responsibilities relates to participants spending time in hospital.

Participants whose disability condition has changed as a result of the incident which hospitalised them (such as having had a stroke or an accident exacerbating their disability status) are unable to be assessed in hospital as assessments are required to take place in the home environment. For some participants this means there is no possibility of being discharged into an appropriately supportive environment. This can have horrific consequences.

Hospital discharge staff may not be focussed on ensuring that participants have the disability supports they need. A male participant was discharged recently in the late afternoon, without medications, and then had to return the next morning to the hospital at 10am for an MRI scan. A female participant was discharged with limited support in a capital city, away from her home environment, was re-admitted nine days later and died after two days in hospital. In order to prevent incidents such as these it is crucial that appropriate account is taken of patients’ disability support needs on discharge.

Another participant from the APY Lands was flown to hospital redacted However, no responsibility was taken to transport her powered wheel chair. This was assumed to be the province of the NDIS. The participant is the person who suffers in this situation, and this particular participant has on occasion refused urgent medical treatment because of a fear that she would not have access to her powered wheelchair when leaving the hospital.

Variations in plan funding

There are a number of concerns around plan funding. Funding detail varies from planner to planner. The plans developed for our clients sometimes appear to have funding allocated arbitrarily. To take one of the simplest examples, a person who has used all of their Coordination of Supports hours early in the plan will be given the same number of hours as in their previous plan when the plan is reviewed, despite what is written in the end

of plan report. On the other hand, a person who has accessed minimal services may be funded more generously.

One of the most frustrating issues in working with the NDIS is the lack of response to input supplied through reports, change of circumstance forms and emails to the organisation. For instance, the NDIS was informed about a client whose cognitive disability puts workers at risk, and that he should always have two workers present. He was, however, funded for services with a ratio of 1: 3 and 1: 4, and therefore cannot utilise those services. In another instance, a child born with a congenital disability (left side paralysis in utero) is described as having a ‘developmental delay’ in spite of having a clear diagnosis and need for several intensive therapeutic disciplines.

The planning process needs to be considered in the context of responding to the needs and personal goals of each individual person with a disability. Because plans are made for individuals from widely differing cultures and backgrounds with access to a widely differing range of services, plans need to reflect the specific situation for that person. In practice, planning appears to operate within guidelines which do not reflect the culture and situation of Anangu and rarely takes account of the needs of individual participants. One example of this would be the instance of a woman in a wheelchair who is non-verbal, but who was funded at a level which meant she could receive only physiotherapy and occupational therapy, but could not afford to access speech therapy to work on her communication skills.

For participants from the emote Aboriginal Lands, planning needs to take account of the cross cultural factors that affect service provision in communities. It should also take account of the limited services available in remote communities, the high cost of travelling to a regional centre to access services, and the high cost for service providers who travel to the Lands to work with participants.

The current planning process is inappropriate for Anangu from the remote NPY Lands in numerous ways. Plans are written in English, in language that is incomprehensible to Anangu, whose culture is oral and based in traditional Aboriginal languages. There is excessive and complex paperwork for clients to sign, all of which is meaningless to most Anangu. The goals in people’s plans are manufactured by the NDIS planner, in conjunction with other providers present at the planning meeting (often not attended by the participant with or without an advocate and guide), rather than reflecting what people actually say or want. Many people do not understand what their goals mean. In Anangu culture it is considered extremely rude to contradict others, so that, even if they are present at the meeting, people may not speak up about what they want. Anangu need trusted advocates who know and understand their needs and concerns and are able to support them in speaking up, or are able to speak up on their behalf.

Because Anangu live in the present moment, they have difficulty even with the concept of a plan and of goals. One of our Directors explained:

Planning future is a risk, you know. If we plan the future now something will happen, you know, like family passing away, and all that. That’s get, hold us down. But really, you know, in our culture and custom we don’t really plan for the future. Wiya (no), nothing. It’s something new in our system, you know. We’ve gotta learn about future.

The following are examples of such ‘manufactured’ goals where not only the language but the sentiment is unlikely to be meaningful for the participants.

A fifty-one year old woman in a wheelchair has the goal:

I would like support to enable me to make good decisions in my daily life. I will achieve this goal by having a personal mentor who will assist me to make good decisions in my daily life, and to build independent skills and abilities. I will be supported by my Coordinator of Supports to engage a culturally and linguistically appropriate person to assist me.

A man with an acquired brain injury has this goal under the heading social and community activities:

I would like to visit Yulara very often so that I can stay away from the community for few hours’ time, which will improve my thinking ability and reduce self-harm tendency as well as to reduce my depression.

A 17 year-old boy who is cognitively impaired (and has no reported behaviours of concern) has the goals:

I want to learn to understand and manage my emotions. I would like to learn strategies to help me develop my concentration skills.

Goals such as these not only require services that are not available on the Lands, they provide an inappropriate foundation for service providers to work with Anangu under their NDIS plan. Desires expressed by Anangu with disability during the recent research conducted to find out how they wanted to improve their lives were focussed on the here and now, and on practical assistance. People wanted to stay on the Lands with family, country and culture. They wanted practical everyday help such as meals, bedding and respite, and transport to events that are a part of community and cultural life. Because kinship is the central organising principle in the social life of Anangu, they perceived that help needs to include the family of the person with disability.

Plans for Anangu need to take account of these factors. Planners working with participants from the remote NPY Lands need to have spent time listening and learning about culture and the remote community socio- economic situation. Currently it would appear that, plans are being developed by people who do not have any understanding of the environment, the culture or the way to work with Aboriginal people from the remote central Australian communities.

The NDIA refers to their Aboriginal and Torres Strait Islander Strategy, 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. It commits that NDIA staff will listen, learn, build and deliver, but in practice this does not take place.

Early Childhood Intervention

Access to Early Intervention for children identified with developmental delay or disability to support their development and participation in family and community life is critical to ensure better life outcomes for children and to reduce the likelihood of dependence on the NDIS funding into the future.

In the NPY Region, culturally responsive practice is used to create inclusive environments where all families are encouraged to participate in and contribute to children’s learning and development. Best Practice in Early Childhood Intervention has a focus on engaging the child in Natural Environments; this promotes children’s inclusion through participation in daily routines, at home, in the community and in early childhood settings. These natural learning environments provide opportunities for children to engage, participate, learn and practise skills, thus strengthening their sense of belonging.

In family centred and strengths based practice the central role of families in children’s lives is acknowledged and recognised. This way of working includes flexibility and preparedness to deliver capacity-building supports in the way that families identify works best for them. In the NPY Region, many families are living in impoverished conditions in overcrowded housing, in these circumstances some families prefer the opportunity for blocks of therapy and family capacity building in urban centres rather than out in community. There can also be shame and blame attached to the families of children with disability and this sometimes means these families want to receive support away from the community where they can focus on the child in a non- judgemental environment.