Ngaanyatjarra Pitjantjatjara Yankunytjatjara Women’s Council

Provision of Services in Relation to Assisting Indigenous Australians in Anangu Pitjantjatjara Yankunytjatjara (APY) Lands to Benefit from the National Disability Insurance Scheme (NDIS)

CONTENTS

Introduction
Summary of achievements across the contract period
Engage with families and carers of children with disability to provide information about the NDIS
Workshop
Community meetings
Develop a comprehensive understanding of the number of children potentially eligible  for DCA services and identify where these children are located in the APY/NPY Lands
Work with the Agency to provide recommendations in relation to a broad framework to support work with families and children
Work with the Agency  to develop an approach  to increasing the range and level of services and supports to meet the needs of children in the NPY Lands
Enhance/build existing disability supports
Barriers experienced by people living with a disability in remote communities
New or enhanced therapeutic services for children
Table 1: Diagnosed Disability in School Age children in the APY Lands. Source: DECD
Table 2: Children 0-6 (as at 1/7/2014) who have been referred to project by family, community or service providers
Table 3: Children 7-14 (as at 1/7/2014) who have been referred to project by family, community or service providers
DCA Planner and LAC services in the short and long term
Further develop NPY Women’s Council’s capability to work with families with children with disability within the NDIS model of choice and control and self-management
Project planning to support increased NDIS staff presence over time - NDIS Planner and LAC services in the short and long term and including potentially an expansion into the NPY Lands.
Advise on community messaging in relation to the NDIS
Provide advice on a plan to integrate personal support as a health career
Lessons learned during the contract period
Recommendations
Summary
Detailed Recommendations


Report: Provision of Services in Relation to Assisting Indigenous Australians in Anangu Pitjantjatjara Yankunytjatjara (APY) Lands to Benefit from the National Disability Insurance Scheme (NDIS)

‘We also need to more honestly assess the impact of policies and programmes and, where success is not being achieved, be prepared to change tack and try new things’.
Closing the Gap: Prime Minister’s Report, 2014

Introduction

This is the final report for the project: ‘Provision of Services in Relation to Assisting Indigenous Australians in Anangu Pitjantjatjara Yankunytjatjara (APY) Lands to Benefit from the National Disability Insurance Scheme (NDIS)’ project and therefore focusses on the launch site in South Australia; that is, children of a specific age group in the APY Lands. Discussions with community members proceed at a pace that is dictated by people living in community and their lifestyle and priorities, rather than operating in accordance with Government deadlines.

“I would like people with disability to say that the NDIS has helped them live the life they choose. Whether that be increased independence, being in a better position to pursue education or employment, or simply being able to participate more fully in the community.” Senator the Hon Mitch Fifield, Assistant Minister for Social Services: Interview for the NDIS News, 5 December 2013

It is important to bear in mind that the life Anangu choose to live is not necessarily the life that mainstream service providers would advocate. For Anangu the opportunity to live on Country among family members overrides the desire for less crowded, more hygienic living conditions, access to facilities and even an increased quality of medical and day-to-day care.

Summary of achievements across the contract period

Workshop organised and held in Alice Springs with seven senior ladies from the NPY Lands
Ten trips to the Lands

  • Discussions with community members
  • Discussions with service providers
  • Community meetings

A small number of families agreeing to engage with the NDIS
Working with the Agency Planner to sign up children to the NDIS
Preparation of interim and final reports
Development of initial list of potential clients

Engage with families and carers of children with disability to provide information about the NDIS

Workshop
The preliminary phase of engagement with families and carers involved holding a workshop of senior, respected women from the NPY Lands. This was held in Alice Springs over the 15, 16 and 17th October 2013.
The concepts behind the workshop were:

  • To ensure that some senior women from the APY Lands had a thorough understanding of
    • What the NDIS is
    • The NDIS definition of disability
    • The role of the NDIA
    • The operation and function of the NDIS (as far as it is known)
      • Long term
      • In the SA Launch site
    • The implications of the NDIS for the APY Lands in both the short and long terms
  • To develop a knowledgeable workforce who would be able to co-operate in talking to potential clients of the Scheme in the Lands
  • To develop a core group of knowledgeable, respected women who will start disseminating this information to community members

The workshop was held in the NPYWC Conference Room in Alice Springs from15-17 October 2013, and was attended by:

  • Margaret Smith (Imanpa and Alice Springs, NT) Director and former Chairperson of NPYWC, former member Uluru and Kata Tjuta Board of Management, Imanpa Community Council Member
  • Yuminiya Ken (Ernabella SA), Director, Mai Wiru, Disability worker  NPYWC,
  • Nyunmiti Burton (Amata SA) Vice- Chairperson of NPYWC and interpreter
  • Maringka Burton (Indulkana, SA) Ngangkari
  • Valerie Foster (Wanarn, WA and Alice Springs, NT) Former NPYWC Director and Senior Health Worker.
  • Anne Pinku Jack (Ernabella, SA) teacher and interpreter
  • Carlene Thompson (Blackhill, SA) Director NPYWC
  • Linda Rive (linguist and archivist)
  • Lee Ryall Project Officer
  • Jo Wickes, NDIA attended on the Wednesday

The first day of the workshop was spent developing a common understanding of ‘disability’. This was done by analysing the Pitjantjatjara and English language relating to disability. The discussion covered the notion of ‘permanent’ versus ‘temporary’ disability, which is not an automatic distinction for Anangu.
After this, the notion of a variable concept of ‘disability’ as applied by Australian Government services was discussed. This entailed looking at the fact that different government services define ‘disability’ in different ways according to the eligibility criteria for assistance in particular programs. For instance, the NDIS covers a wider range of disabilities (FASD, psychological disability etc.) than the current Tri-State Disability funding. This can result in confusion and uncertainty for Anangu, and a conviction that there is no logical basis for Government funded assistance.
Anangu do not have an over-arching term for disability. This became clear during discussions at the workshop. Instead, the language has terms for specific issues which affect people. This adds to the difficulty of explaining the role of the NDIA when talking to community members.
An understanding of disability for the purposes of the NDIS was established along the following lines:
‘a disability that is attributable to one or more intellectual, cognitive, neurological, sensory or physical impairments, or to one or more impairments attributable to a psychiatric condition; and the person’s impairment or impairments are, or are likely to be, permanent ’

permanent

titutjara, rawa

temporary

unytju

‘The impairment or impairments result in substantially reduced functional capacity to undertake, or psychosocial functioning in undertaking, one or more of the following activities: communication, social interaction, learning, mobility, self-care, self-management (see paragraph 5.8); and ’

communication

putu wangkapai

social interaction

putu tjunguringkula kutjupa kutjupa palyalpai

learning

putu nintiringanyi

mobility

putu uripai

self-care  

walytjangku putu atunymankupai

self-management

putu walytjangku tjukaruripai wiya

‘the impairment or impairments affect the person’s capacity for social and economic participation; and the person is likely to require support under the NDIS for the person’s lifetime.

On the second day, the workshop looked at the role of the Government in relation to disability, the establishment of the NDIS and the National Disability Insurance Agency and the rollout of the scheme in the launch sites- in particular in South Australia. Jo Wickes’ presence was helpful in this context. Discussions on this day covered funding and the availability of money for participants. As discussed below, there are major issues in this regard for many Anangu, and consequently the ladies at the workshop were adamant that individual funding packages would be most inappropriate, and that NPYWC should continue to hold the disability money “Minyma Council wanungku kanyinma. Let it be run through the Women's Council."

The final day of the workshop was occupied with discussions around talking to community members, establishing starting points for community meetings and developing some resources that would help in explaining the concepts behind the NDIS to Anangu.
This workshop was considered extremely effective by the women who attended it, and they have requested further workshops. These would be valuable in widening the base of strong women in the communities who have an understanding of the function and role of the NDIS

Community meetings

Background
People in remote Central Australia live in poverty in an extreme environment. Communities are isolated and the climate is harsh. Violence is common, exacerbated by substance abuse and a culture of blame and punishment. People are driven by basic needs for food, shelter and safety, and compete for limited resources. Cultural obligations often determine priorities for the distribution of resources such as food, clothing and money. This includes carer payments which are often given to the culturally most important person rather than the person who is doing the caring work. There are high numbers of ‘failure to thrive’ children in the APY Lands.

Partly as a consequence of the necessity to satisfy basic life needs, and partly as a result of cultural tradition, most people live in the present moment, not considering or planning for the long term. Anangu are very concrete thinkers, with their strength being in the practical and the present. Their language does not include ‘either or’. This limits planning and/or budgeting at all levels- from over the next few days (food budgeting) to the medium term (visits to medical services etc.) to planning for their own and their children’s futures.

Anangu culture has a different attitude to parenting from mainstream Australia. Children are not forced to follow rules, and are generally left to make their own decisions from an early age about activities such as sleeping, eating, where they wander and even whether they go to school. Children are encouraged to be autonomous and are expected to learn from experience (including the reactions of other people) rather than from instruction.

‘The responsibility for child care and rearing is distributed widely amongst a range of kin, making any Western notion of ‘primary carer’ meaningless.’ Children are often left with family during their parents’ absence from community, or they may travel out of community with such carers. Family members may also take over child care when parents are unable or unwilling to fulfil their responsibilities. Extended family carers can provide a natural ‘social-service system’ for children but with the pressures of mobility, poverty, substance abuse etc., shared responsibility can also result in erratic or marginal care. This means service providers need to work with the family, approaching the currentcarer and possibly also the person or people to whom they have spoken previously.

Family Meetings
During the project, discussions were held with a number of families in Indulkana, Mimili, Fregon, Ernabella, Amata and Pipalyatjarra.

Working with cultural consultants (malpa) who were able to help explain the idea behind the NDIS was helpful, but many families were reluctant to ‘sign up’ for the sorts of reasons outlined below. It is anticipated that this situation will improve as repeated visits and meetings allow family members and carers to become familiar with the NDIS and its proposals and they feel able to talk about their children and consent to their child’s name being put forward as a potential client of this new service.

For Anangu, the process of familiarisation involves the development of a trusting relationship with the workers- involving repeated supportive visits to that family over time. Developing a supportive relationship is likely to involve that worker helping the family with issues that may appear at best peripherally related to the child’s disability, but which respond to the family’s expressed needs.

While community members are comfortable to acknowledge that children with severe functional difficulty are ‘disabled’, there is a general lack of understanding of the need for early intervention for children whose disabilities are less obvious. On many occasions, community members pointed out children who were delayed in areas such as speaking and social development, but parents (usually mothers) denied there was an issue.  This was due to a number of factors, including:

  • Shame.  Anangu define themselves through their relationships, rather than through work or study, and maintaining ‘face’ with other family and community members is therefore supremely important. Losing face, for whatever reason, is to be avoided at all costs.
  • There is a natural reluctance for all parents to acknowledge that there is something ‘wrong’ with their child.
  • Anangu do not plan for the future, and are focussed on the here and now. They do not plan for their own or their children’s future in the way many people in mainstream society do. Asking a parent or a child what a child will do when they are grown up will generally elicit a shrug of the shoulders. Consequently, people do not see disability in terms of lost opportunity. Adult disability clients in a wheelchair, who could potentially operate independently, appear to have no desire to work towards independent movement as a goal.
  • Anangu society operates on a system of external blame and punishment and the fear of being held responsible for something ‘wrong’ with the child and subsequently blamed and/or punished contributes to the unwillingness of a number of mothers to acknowledge any potential problems.
  • Lack of understanding of issues associated with some disabling conditions. Discussions with service providers indicate that foetal alcohol syndrome and or brain injury is common in the APY Lands. The widely varying symptoms associated with these conditions have become normalised to a large extent and as a result may be unacknowledged. Because many Anangu adults have had a negative experience with schooling, and consider that children learn by experimentation, concern with learning difficulties is not always perceived as a problem
  • Another factor which generates reluctance to work with service providers on the APY Lands is negative experience with service providers. Fear of the child being removed by Families SA is extremely powerful, particularly as the reasons for child removals are not always understood. This outweighs the chance of receiving help and makes mothers and family members reluctant to speak out.
  • The high numbers of different services represented in a community such as Ernabella add to confusion and uncertainty for community members. Ernabella is regularly serviced by NPYWC Disability workers, Intensive Family Support Services, NPYWC Nutrition workers, Family Violence and Sexual Assault Workers, ASSIST, the Child and Adolescent Mental Health Service (CAMHS), Child and Family Health Service nurses, DCSI Youth workers, Money Mob, Pukatja Aged Care (providing HACC meals) Families SA, Catholicare and the PHaMs program. In addition Nganampa Health Service has regular visiting specialists such as the paediatrician and their mental health service, while the school provides a platform for visits from Australian Hearing, speech pathologists and educational psychiatrists.

Despite the number of these services, many are inadequately staffed in relation to the number of potential clients and are severely limited in their ability to provide in-depth assistance or support. Many operate on a ‘fly in fly out’ basis. On the other hand, some communities, especially the smaller ones, have few or no services
There is no current detailed map of services based in or visiting the Lands; this report gives some indication of services that are available.

During February and March 2014, public meetings were held in each of the six communities, Indulkana, Fregon, Mimili, Amata, Ernabella and Pipalyatjarra to provide a wider familiarity with the NDIS and its potential benefits. Attendance varied from community to community, with people coming and going during the sessions. This was not as effective as the intensive workshop held in Alice Springs, with people showing only a casual interest. There was not the opportunity for in depth discussion of the processes and role of the NDIS.

In addition, relationship-building and discussions were continued with individual families and with service providers during regular visits to the APY Lands

Develop a comprehensive understanding of the number of children potentially eligible for DCA services and identify where these children are located in the APY/NPY Lands

Identification of children potentially eligible for NDIS Services is limited by the lack of specialist diagnosticians for areas such as delayed intellectual development, acquired brain injury and foetal alcohol spectrum. Children who display symptoms of these and similar conditions need to attend diagnostic services in Alice Springs, Adelaide or Port Augusta. Resources limit the number of children who can receive such opportunities, so diagnosis is generally informal, based on behaviour and history. The situation is exacerbated by many Anangu not prioritising appointments and not attending them.

Provision of support without a formal diagnosis would alleviate this situation. Alternative support would then depend on discussions with family and service providers who have been working with the child, such as

  • Nganampa Health Council. From time to time, Nganampa Health may be unable to give a firm diagnosis relating to concerns about a child, for example with suspected autism or FASD. It would be appropriate for eligibility not to depend on a ‘solid’ diagnosis but to accept tentative diagnosis.
  •  Child and Family Health Services Nurses work with children 0-3 and conduct developmental tests with this age group.
  • Teachers spend many hours in the classroom with children from 3 upwards. They are in a position to observe children learning and playing in the context of their peers and are able to document areas where a child is struggling.

Aside from diagnosis, entry requirements such as proof of identification and filling in forms also form barriers to service provision instead of facilitating assistance for people. Some people on the Lands do not know their birth date, and people may have several names, or change names from time to time. Service provision will need to take this into account and to develop ways of minimising and circumventing such requirements. Issues relating to the access request form and how it might look are discussed below (see p11) Referrals are likely to occur though discussions with community, family and service providers. As discussed elsewhere, application for NDIS services by clients or carers is only likely to occur after a period during which workers have developed a relationship with families.

Because of the reluctance of families to acknowledge disability in their children and to engage with the NDIS, it is not yet possible to establish a final figure for children eligible for early intervention assistance. A list of potential clients referred to the project from a number of sources is included and discussed under the section on new or enhanced therapeutic services for children (see p 12). This list currently represents only the tip of the iceberg in terms of children who are potential clients and will expand as community based discussions continue.

Work with the Agency to provide recommendations in relation to a broad framework to support work with families and children

The provision of services to people living in remote communities needs to occur within a framework which:

  • Is accountable to Anangu
  • is culturally aware and is able to work within cultural constraints and the nature of working with Anangu in the Lands
    • first language of most people is not English
    • people need to develop relationships with workers before agreeing to sign up to a service
      • people want to relate face to face rather than via the phone, mail, or online
      • people want ongoing low level support
    • people are focussed on the present rather than the future and on basic needs: food, shelter and safety
      • Anangu have an expectation that all levels of disability will be assisted with low level community and in town support, including food, shelter and safety when the need is urgent.
  • takes account of the high costs in distance, time, and staff fatigue which result from the remoteness of the location
  • provides for consistency and transparency  of service
    • maintaining and supporting staff long term so that they are able to develop a trusting and mutually respectful relationship with clients
    • Anangu are not comfortable building relationships with workers via the phone or online
  • understands and works with the service providers currently in the community

For these reasons, services are best provided through an aboriginal organisation such as NPY Women’s Council whose membership is drawn from the area and which has a long history of working with people and developing respectful and trusting relationships.

Because people will not sign up to the NDIS until they have a respectful and trusting relationship with the worker, funding needs to be available for active recruitment (and relationship building) prior to people signing up to the scheme. This could be a single worker (possibly a specifically designed the LAC role).

Once people do sign up, support and case management of the sort currently provided by NPYWC is needed both until appropriate services can be provided (this can be time-consuming for the Lands) and then on an ongoing basis in conjunction with specialist services.

People who have less complex needs and are not signed up to the NDIS (e.g. amputees or people with visual impairment) also require low level community support and occasional in town support. This could be provided by a role such as that of the LAC or other disability worker sitting within NPYWC. Some untied funding would need to be associated with this position for brokerage in order to respond quickly and appropriately to situations as they arise.

The isolation of communities and the remote nature of service provision dictate a need for

  • economies of scale
    • a return trip to the APY Lands to visit a client can entail up to 16 hours’ driving (plus the on-costs in vehicle maintenance and fuel), and at least one night’s accommodation)
      • plane flights are irregular (usually on a weekly basis when the weather allows) and often all twelve seats are booked well in advance
      • the client may be absent when community is reached. Anangu are peripatetic and often leave community on impulse (despite having arranged to meet with a worker)
    • Having the ability to work with other clients from the target community and nearby places spreads the cost of travel and prevents a wasted trip
    • access to the current limited infrastructure in the Lands
  • a guaranteed funding baseline. Because of the high cost of supplying services to remote locations, it is imperative that organisations providing services have a basic guaranteed income level to enable them to continue to operate on the Lands. Economies of scale are crucial for access to infrastructure such as vehicle lease arrangements, accommodation, and the employment and retention of appropriately skilled staff. As mentioned below, this could take the form of a block funding or the funding of a position with some brokerage
    • There is a high turnover of staff in Central Australia generally; this is particularly so  for remote community workers as a result of issues such as the low standard of accommodation and lack of services in the Lands, long hours of driving on poor roads, threats to personal safety and the difficulties of working cross-culturally. These are discussed more fully on p 19. It is important that staff are supported by a management system which appreciates these issues and the implications for staff wellbeing.

block funding (or the funding of appropriate position(s) with brokerage) which will provide case management support, assistance and co-ordination of service provision for that part of the population which is living with a moderate or mild form of disability and which currently receives support services and expects to continue receiving services. This position would also be able to work with people not yet engaging with the NDIS to provide the low level of support and co-ordination which is expected and necessary. Such support also needs to be associated with the provision of services and equipment for people with more severe disabilities. The relationship with this worker will provide a contact point for Anangu and community services when issues arise (whether they are matters of food security, broken equipment or issues with carers).

Work with the Agency to develop an approach to increasing the range and level of services and supports to meet the needs of children in the NPY Lands

Enhance/build existing disability supports

The issues outlined above need to be taken into account in looking at the provision of services, supports and therapies to meet the needs of children in the APY Lands

Families are frequently unable or reluctant to arrange and attend appointments and medical reviews for their children. There is also a disinclination, partly as a result of cultural views of parenting, to enforce boundaries for a child. This can apply to taking medication, regular sleep, ensuring hygiene and providing a healthy diet.

  • Support is required in the form of pro-active work with families. This means a regular, frequent presence in the community (including home visits), and will only work if good relationships have been built up with families. Anangu need continual support and encouragement if they are to work consistently with their children at home as such work is different from their traditional mode of parenting.
  • Anangu frequently move from community to community (or to a regional centre). While the immediate reasons for changing community will differ (football carnival, funeral, sorry camp, cultural business, family, visit, shopping, inma, meeting, holiday, etc.) the pattern is common, and staying in the other community or regional centre may last a few days or several months. This lifestyle pattern adds to the difficulty of working regularly with families unless services have a geographically wide-ranging coverage and are willing and able to be flexible.
  • Workers also need to be aware of culturally-based sharing of the carer role and to be prepared to work with a number of different family members.

Many services in communities are limited by funding levels in the numbers of communities serviced, the time spent in communities and the number of clients they see. Expanding these services would enable increased early childhood intervention in several vital areas. Examples include

  • Play groups for 0-3 aged children. These are often based at schools and/or family centres (which are sometimes associated with schools). This arrangement works well in some ways, but inhibits parents who have had a negative schooling experience themselves from bringing their children to the Centre. Some parents are also wary of engaging because of the association of Families SA workers with the schools. Currently, Child and Family Health Services visit the Lands on a fortnightly basis during school term in five of the main communities (Ernabella, Amata, Fregon, Mimili, Indulkana) Nurses based at the play group centres assess basic developmental progress and work with families on parenting strategies, nutrition etc. They also work in family homes where people are comfortable with this. They do not reach all communities or all families within any one community. These services would be able to reach a wider group with expanded funding. Other visiting services, such as NPYWC Child and Family Wellbeing Services, also work through, or based at, the play group centres.
  • Work with children’s hearing. Most children in APY Lands schools have hearing problems, (see Table 1 below) which compound their learning disadvantages. Currently Australian Hearing visits schools in the Lands twice a year. Their work focusses on testing for and maintenance of hearing aids. Hearing aids are usually kept in the classroom and usage depends on the vigilance of the teacher concerned. The disability arm of the department of Education and Child Development also funds a hearing co-ordinator position which is currently vacant but which would visit the Lands three times a year. This position would work primarily with teachers.
    There is a need for work to educate and support families in the lifestyle changes which might help prevent the repeated ear infections and perforations that further damage hearing. As with a speech services, current services are constrained to work with teachers rather than giving support directly to children and families on any regular basis.
  • Speech pathology. DECD based speech pathologists visit the schools once per term and provide teacher support with regard to school age children (children aged three and upwards). As with hearing specialist visits, there is no support for regular work with children or for those families who wish to work with their child. A number of children on the APY Lands would benefit from one to one support in speech development. Obvious difficulties arise from working in a second language. It might be possible to train support workers including Aboriginal Education Workers (AEWs) in speech therapy techniques. This process would entail putting support and supervision of such work in place (see discussion on p 19).
    There is also a pressing need for speech work with children aged 0-3 who are delayed in their speech development. This might mitigate the need for more intensive services with the same children at a later age
  • Several service providers commented on the need for additional psychiatric services as many children are living with trauma which affects their behaviour, social skills and learning. Both adults (caregivers) and children experience a high rate of traumatic events and are living with loss and grief as well as a high level of background violence in home:
    • The Child and Adolescent Mental Health service currently has some 200 children on their books and is unable to accept additional referrals. Workers are currently based in Amata, Ernabella and Indulkana.
    • There is a need for a clinical psychiatrist to work with children on the Lands.
    • The DECD has an unfilled position for a psychologist to work on the Lands. This position, if filled, would visit twice yearly but would not visit all schools in the Lands

NPYWC Disability Services currently provides case management (case co-ordination, crisis management, respite, community support and brokerage) for disability clients across the NPY Lands including for children on an as required basis. NPYWC also provides an advocacy service when needed.  These supports, which are often focussed on the immediate needs of clients, will need to continue both before and after families engage with the NDIS.

NPYWC Child and Family Wellbeing Services work in all communities to provide parental guidance with regard to pre-natal and early years care and nutrition of children up to age 5 who are at vulnerable or at risk- ‘failure to thrive’ children. They refer children who may have special needs to the Disability team

Barriers experienced by people living with a disability in remote communities

Accessibility

Housing is limited; houses and especially fittings are frequently damaged and in need of repair. Footpaths are not usual, which is a concern for clients with mobility issues. The SA Housing department works with requests to provide these facilities. Work is carried out when contractors are available; contractors (for housing modifications and for repairs to fittings/air conditioning/plumbing etc) do not live on the APY Lands but visit from time to time.

In some communities, facilities like the store and the office are not accessible for people with reduced mobility. Improving accessibility for these buildings requires negotiations with the relevant organisations and the community council. There is no current mapping of the situation- any future detailed audit would be a major undertaking, requiring specific funding.

Currently the situation is approached on a case by case basis as part of the case management and disability advocacy roles by NPY Women’s Council and other appropriate service providers. This work needs to continue. New buildings are increasingly designed to be more accessible than earlier buildings were, but still lack concreted approaches and ramps down into wet areas.

Bedding

On the Lands, people often sleep on the ground or on mattresses on concrete verandas, so the provision of beds and swags is considered reasonable and necessary to support people who have a disability. Bedding is frequently burnt or abandoned for cultural reasons, or mislaid. People with a disability are among the most vulnerable in community and frequently have bedding stolen. The combination of swags and bedding (blankets, sheets and pillows) is particularly useful as people can take them when they move house or travel to another community. These items, currently supplied to many clients through NPYWC Disability and Respite brokerage, can be replaced at a reasonable cost if needed.

Respite

Disability clients of all ages are dedicated to living on the Lands, close to Country, culture and family. Family carers are a key factor in achieving this, and in order to maintain those carers’ ability to look after children or adults with disability, periodic respite care is necessary. This is currently arranged through NPYWC using both respite (NRCP) and disability funding. In order to maximise the control people have over their choice of lifestyle, this service needs to be available as part of any package offered through the NDIS.

Co-ordination of Supports (Untangling Everyday Choices)

NPYWC currently works with clients around co-ordination of appointments and referrals with organisations such as Money Mob and Centrelink. Sometimes this involves support and advocacy for people during their negotiations. Some clients are particularly vulnerable, such as those with psychological and/or cognitive issues (e.g. brain injury, intellectual delay or foetal alcohol syndrome). These people may require special arrangements and frequent adjustments of those arrangements to ensure basic needs such as schooling, appropriate accommodation and even food security are met.

Paperwork – Access Request Form

Anangu society is based on personal interaction and does not place a high value on reading and paperwork. Many people are functionally illiterate. Extensive paperwork therefore constitutes a barrier to engagement with services such as the NDIS, and requires mentoring and assistance in order to be achieved. The access request form developed by the NDIA is moderately complex and uses complex language. This is threatening for Anangu as they are not sure what they are agreeing to on the form and their comfort in filling it in will depend on their relationship with the worker assisting them. They need to trust the person who is helping them understand (explaining and paraphrasing) and often writing in the responses. When asking people how they prefer to be contacted, the form doesn’t offer the option of ‘in person’ which would be the most common response among Anangu. Mail is not always appropriate, as it needs to be taken to a reader and or an interpreter who may or may not fully understand the import of the letter. People are not always contactable by phone and are often not comfortable using it, particularly for the discussion of complex issues.

The access request form would more appropriately be a one or two page form, clearly and simply worded, bearing in mind that Anangu do not speak English as a first language, and many are not literate.

Similarly, Participant Plans need to be clearly expressed in simple English. It is also important that plans do not refer to funding amounts in dollars, but rather to hours of service or equipment, as family members (and possibly clients) misunderstand the purpose of the funding and the level of ‘humbug’ can become extreme.

Mobility

The mobile Anangu lifestyle means that workers need to cover the whole of the Lands, and even the tri-State area. Workers need the flexibility to move between communities in order to ensure continuity of access to supports for clients. Organisations such as NPY Women's Council provide broad coverage both geographically and in range of services and provide holistic services wherever clients are- in the NPY Lands or visiting Alice Springs.

New or enhanced therapeutic services for children

The development of new and enhanced therapies for children in the Lands will depend on the list of potential clients, carer willingness to engage with the NDIS, and an assessment of areas of need. Initial enrolment is likely to be low in numbers and spread across a number of communities. Table 1, based on information supplied by the Department of Education and Child development (DECD) gives an indication of disability in specific categories in school age children in the APY Lands. Numbers are indicative and change as families move, as students leave school and as students are verified.

Table 1 : Diagnosed Disability in School Age children in the APY Lands. Source: DECD

 

TOTAL

Hearing

GDD

ID

Speech/ Language/ Communication

Physical

Amata

41

35

1

2

5

1

Ernabella

36

33

1

1

2

 

Fregon

11

11

 

 

 

 

Indulkana

17

16

 

2

2

 

Kenmore Park

3

2

 

1

 

1

Mimili

16

16

 

 

 

 

Murputja

6

4

 

1

 2

 

Pipalyatjarra

12

12

 

1

1

 

TOTAL

142

129

2

8

12

2

These figures represent only those children who have a diagnosed disability according to DECD criteria. They apply to all school age children, and do not include children with a learning difficulty or children suffering from trauma and psychological disabilities. The National Collection of data for the Disability census for school sites would apply to many more of the students as it includes learning difficulties as well as the DECD category of "disability".

The discrepancies in the number between the total and the impairments occur if a person has a number of impairments.

The figures are included here as they give an indication of the prevalence of the level of disablement of children in the APY Lands in the specified categories, and provide an indication of priority focus areas both for service provision and early intervention.

While the CAFHS nurses have started developmental check-ups for 0 to 3 age children, too few of these have been completed and verified by re-testing for these figures to be significant at this stage. This process will be more useful in indicating areas where work is needed as the coverage expands.

The following tables summarise the referrals of children to the project by family, community and service providers. As with the table above, discrepancies between the total and the impairments occur as a result of children having a number of impairments. The disabilities in these tables have not necessarily been confirmed by diagnosis, but provide a basis for further work. As the project has concentrated on the younger age group during 2013-2014, the numbers in Table 3 represent starting point rather than a realistic representation of the situation. This is clearly seen through comparison with the numbers of school age children with confirmed, diagnosed disabilities in Table 1, or by looking at the numbers of clients of services such as the Child and Adolescent Mental Health Services.

Many of the families concerned are not ready to acknowledge that their children need extra help, and do not yet wish to engage with the NDIS. However work and relationship building with those families has continued up until the end of the project.

Table 2: Children 0-6 (as at 1/7/2014) who have been referred to project by family, community or service providers

 

Total

Hearing

Speech

FASD

Trauma

ASD/ ADHD

Physical

ABI/ID/ GDD

Sundry

Amata

5

 

3

 

1

 

 

1

 

Ernabella

4

 

 

1

1

1

 

 

social

Fregon

5

 

4

1

 

1

 

2

 

Kenmore

1

 

 

1

 

 

 

 

 

Indulkana

3

 

3

1

 

 

 

 

 

Mimili

3

 

1

1

 

 

1

 

 

Pipalyatjarra

1

 

1

 

 

 

 

 

 

Umuwa

 

 

 

 

 

 

 

 

 

Total:

22

 

12

5

2

2

1

3

1

Table 3: Children 7-14 (as at 1/7/2014) who have been referred to project by family, community or service providers

 

Total 

Hearing

Speech

FASD

Trauma

ASD/ ADHD

Physical

ABI/ID/
GDD

Sundry

Amata

 

 

1

 

 

2

 

1

encephalitis

Ernabella

5

1

1

1

 

1

1

2

NFT1,
Diabetes II

Fregon

1

 

 

 

 

1

 

 

 

Kenmore

1

 

 

1

 

 

 

 

 

Indulkana

4

 

1

 

3

1

 

2

 

Mimili

1

 

 

1

 

 

 

 

 

Pipalyatjarra

1

 

 

 

 

 

 

1

 

Umuwa

1

 

 

1

 

 

 

 

 

 

14

1

3

4

3

5

1

6

3

 

Following discussions with service providers and community members, areas where new or enhanced therapeutic services and supports would benefit children with specific disabilities include the following. Delivery might be most efficient in association with services which already exist in the Lands.

  • There are currently no diagnostic services for Acquired Brain Injury or Foetal Alcohol Syndrome, conditions which are common throughout the APY Lands. Diagnosis of these conditions is additionally hindered by the lack of culture- and language- appropriate tools.
    • There is also a lack of support services for children and the families of children living with these conditions. In part, this situation might be helped through provision of training for a range of current workers who encounter these children regularly, for example disability workers, nurses, teachers, Aboriginal Education Workers (AEWs), student support workers Aboriginal Health Workers (AHWs) or through work with families.
    • Some service providers have commented that a number of children appear to have a complete lack of social skills- can’t play games, don’t have friends. As Anangu culture focusses on social relationships and interaction, a lack of social skills is a strong indicator of other underlying issues. These children may have an acquired brain injury or be affected by foetal alcohol spectrum or autism spectrum disorders, and require a consistent response across all the services they access. Such children need assessment and diagnosis based on observation and discussion with families and the child before a response can be developed.
  • Play therapy could be based at Play Group (0-3) and Pre-school (3-5) Centres to work with children whose emotional wellbeing is compromised. Child-Centred Play Therapy helps children work through emotional, psychosocial, developmental and behavioural difficulties and address family problems. It is particularly valuable as therapists can work with children from a very young age. Such a service might operate in association with current services – the Play group and the CAFHS nurses, the Pre-school and the Child and Adolescent Mental Health Service (CAMHS) which currently works with school age children.
  • Behavioural therapy is very much needed on the Lands for children suffering from several conditions. However, there are a number of issues with this style of therapy. As noted elsewhere, Anangu do not live in a way that imposes boundaries on children’s behaviour, so children who are in need of help to establish socially acceptable boundaries around their behaviour do not receive help and support at home. Similarly, Anangu have a different sense of time and do not live their lives by routine, so are unlikely to provide regular routines for children who are in particular need of them. Some children learn to modify their behaviour depending on the environment. This is often most obvious in differing behaviours at school and home. Behavioural work would therefore be most effectively associated with environments such as the school which are more suited to this style of therapy.
    Because of the conflict with accepted cultural practice, carrying such newly-acquired behaviours across to the home environment would require strong commitment from families. Even then, it would require intensive family work as well as regular and ongoing support and encouragement to have any hope of success.
  • Several areas for enhanced service provision have been suggested above.
    • Expanded developmental screening (see p 9)
    • Hearing services(See p 10)
    • Speech pathology (see p 10) A number of children in the 0-3 age group have delayed speech. The need for later, more intensive interventions would be reduced or eliminated as a result of working with them as their problems emerge.
    • Child psychiatry on the Lands – in association with Nganampa Health Service and CAMHS
  • Bedding (See p 11). In response to the immediate need of people who are extremely vulnerable.
  • Respite (See p 11). This service is critical in enabling people with a disability to continue to stay on the Lands and participate in family and cultural life. Changes will occur as Respite funding moves across to sit under the HACC umbrella as well as from the rollout of the NDIS. Consequently, money may not be available through the National Respite for Carers Program to fund respite for carers of people with a disability. Accordingly it is important that the Scheme take up this responsibility. Such respite would focus on maintaining the ability of Anangu with a disability to stay on country.

When visiting people in community, workers need a level of flexibility as people are often absent from community or otherwise occupied. This can occur despite making contact with the person or family before the visit. Because people live in the present, plans may change at any instant. Service providers who have incurred costs in visiting the client need to be able to charge the NDIS for those costs. Alternatively the workers might be able to utilise their time with other clients or services so they are not out of pocket.

DCA Planner and LAC services in the short and long term

Cultural considerations

Working effectively with Anangu only happens when individual staff spend time in the communities long term and build respectful and trusting relationships with clients. This particularly applies to anyone working with clients to make plans for the future.
Thinking about goals and planning is not a comfortable process for Anangu because their focus is very much on their current situation. Also, Anangu consider it impolite to ask personal questions and find that process very confronting.

People can take offence, and some can respond negatively or aggressively, particularly if they feel they are being ‘shamed’ by the questions. Other people will give what they feel is the ‘correct’ answer in order to minimise any conflict. It is therefore very important that clients trust the planner or disability worker/LAC and that the worker understands the cultural constraints and is able to incorporate this awareness into their mode of working. Developing a plan is a matter of getting to know the person and their family well, listening to them talk about their daily life and the difficulties encountered, making suggestions, (sometimes by telling stories about other people in similar circumstances and what has worked for them) and giving the person time to respond (possibly a matter of days). In this process it is crucial to avoid giving the impression that a suggestion is a firm offer (discussed in more detail below).

Most families with children who have a disability from the APY Lands are not yet ready to develop plans, particularly with a stranger. It is not appropriate for a planner to arrive in community and start talking to Anangu about plans for themselves or their children. This process needs to take place alongside a worker who is known to the client and who has built up a relationship with the family, talked about the scheme, established the needs of the child concerned and has an understanding the possibilities for helping the child.

If planners are visiting the Lands infrequently they will be unable to work in an indirect manner- getting to know the carer, talking to appropriate family members and offering suggestions rather than using direct questions or asking the child’s family to suggest plans. This makes it imperative that they work in conjunction with another worker (who may be performing in the LAC role) and who has developed a long term relationship of mutual trust with the client. An interpreter who understands the situation, including the way the NDIS operates is also likely to be required.

Because of the length of time involved in Anangu families developing trust and engaging with the NDIS, it may not be cost-effective for the planner to visit clients as soon as they indicate they wish to do so. An alternative might see the LAC role developing initial plans as people are ready, and the planner visiting to confirm details with a number of families. This would allow timely commencement of the process of obtaining appropriate services while maximising cost-effectiveness.

The planner and LAC will need to be aware that Anangu do not think about possibilities in the same way as mainstream workers and interpret ‘if’ or ‘maybe’ as definite.

'The belief that ‘White Men are liars’ can arise when Westerners put forward purely hypothetical ideas often introduced by ‘if’. These are ideas only, and not linked directly to reality, as ‘we might go to town tomorrow. If we go, we’ll ’ (p. 9) but the Aboriginal will interpret this as ‘when we go to town tomorrow....’.The absence of pure hypothesis affects also any discussion of alternatives and possibilities, which remain no more than ideas, merely possible, not real, until one is chosen. Such difference affects interactions where comprehension is vital, such as planning and discussions about funding.’

It would be most appropriate to provide these services through an aboriginal organisation such as NPY Women’s Council which is based in the region through its membership and directors, has a long history of work in the disability area, and works in a culturally appropriate manner.

Costing and infrastructure considerations

Basing such services in an established organisation allows access to infrastructure currently in place with the organisation such as vehicles, staff support, IT support and housing. It also enables Planner and LAC Services to work in close awareness of and consultation with programs operated by NPY Women’s Council, such as aged care and disability case management and advocacy, the National Respite for Carers Program and the Child and Family Wellbeing program.

The disability worker for the APY Lands is based at Umuwa. As well as brokerage, funding has to cover permanent rental accommodation, phone, computer and internet, lease of a 4 wheel drive vehicle, satellite phone and epirb, fuel, travel allowance, wages and on-costs including continuing staff training, quality assurance audits and accommodation in community for work travel as well as in Alice Springs for regular breaks. Indigenous co-workers need pay, travel allowance and accommodation when travelling. There are also management and administration costs. This program case manages around sixty clients, up to ten of whom may be inactive at any one time. Programs for advocacy and the National Respite for Carers Program are funded separately.

Longer term

Similar considerations apply to the longer term as the NDIS expands the range of its services to cover all age groups and extends into the whole of the NPY area. The issues already covered in this report in relation to reluctance to undertake forward planning, concern with basic everyday needs, unwillingness to engage with new people (and especially to negotiate via phone or computer) apply to all disability clients from the Lands As the full rollout of the Scheme occurs in all States, NPYWC’s proven record of working effectively tri-State will facilitate working with Anangu clients whose mobility does not take account of State borders.

Further develop NPY Women’s Council’s capability to work with families with children with disability within the NDIS model of choice and control and self-management

NPY Women’s Council‘s members are the aboriginal women who live in the remote communities in the tri-State area.

“We all had something to say, about caring for our children and families, about our aspirations to have good lives. We wanted to talk about issues to the government. We wanted to talk together to give a strong message. That’s why we formed the Women’s Council.”

The Council is answerable to its membership through General Meetings which are held on the NPY Lands. Twelve Directors elected from the membership oversee the organization’s operations through four or five formal meetings each year. Directors also offer advice and assistance to staff in the Lands. As happens for all NPYWC programs, the Directors will oversee work carried out by Tjungu Team in association with the NDIS.

NPY Women's Council currently provides an integrated, whole of life service to people living in the NPY Lands. This is particularly valuable for Anangu who view life in a much more holistic manner than non-Indigenous people.

  • The Tjungu team works with elderly men and women, people of all ages with a disability and also provides respite for their carers through the National Respite for Carers Program
  • Child and Family Wellbeing works with mothers-to-be and children from newborn to age 5, focussing especially on children who are at risk or failing to thrive. The workers also offer nutrition and healthy food education to families.
  • The Domestic and Family Violence Team provides assistance and advocacy for individual victims of domestic violence- prioritizing their safety within a case management framework. It also facilitates community education with NPY communities, police, justice, health and other relevant workers and works with other organizations and services to improve responses to domestic violence.
  • The Youth team services comprise diversionary activities, school holiday programs, individual case management and substance abuse and mental health awareness programs.

The Disability team at NPY Women’s Council currently works with families and children on a person centred basis and focusses on maximising the level of choice and control available to clients in the Lands. The primary concern for Anangu is to live on Country with family members. NPY Women’s Council works constantly to support people in this goal, and is answerable to its members through its elected Directors and at General meetings of the membership on the Lands. Sometimes the conditions under which a client chooses to live would not be considered acceptable to mainstream providers. However, Women’s Council, driven by the membership, maintains that wherever possible, clients should make these basic choices and be supported in them.

Because of the specific circumstances which prevail in remote communities some aspects commonly accepted as being important in giving disability clients increased choice and control over their own lives can be problematical.

For instance, the high costs related to service provision in remote Central Australia mean that organisations supplying services can only do so with a guaranteed level of clientele, and preferably, block funding. The availability of services needs to be maintained. Offering clients a choice of service provider is more difficult to implement than in a mainstream urban environment. Many of the services are inadequately funded for the number of potential clients living in the Lands, particularly given the time needed for the engagement process. Some cover only a limited number of communities. Some experience a high level of staff turnover. Improvements in these areas will benefit clients.

NPYWC Tjungu team is currently working with the NDS Costing and Pricing subcommittee in relation to costing and pricing.

Funds Management

Anangu are not yet ready to manage their own funding packages. Priorities for most families in the Lands are expenditure on the basic needs of life- food, clothing and safe shelter, with any additional money being spent on immediately perceived ‘needs’. As noted in the statement by the Directors of NPY Women’s Council relating to the NDIS,

"The prevalent cultural tradition practice of sharing dictates that any goods or money held by one family member shall be used for the good of the family in accordance with established priorities which may or may not include the family member. This would make it difficult and often impossible for the person with a disability to have a say in the use of any money given to them under the proposed scheme. In addition such a situation would mean the recipient was open to abuse from some family members who see their needs as paramount.
The situation is made more complex because Anangu and Yarnangu have no tradition of budgeting, and generally live from day to day. It is not unknown for people to receive a large sum of money, such as a payment of several thousand dollars, and not to have enough money to buy food a week later. Consequently, the need to set aside some of a particular sum of money for the future is not perceived as a priority, and there is a need for safeguards around access to any such funds, as well as a lack of organisations and personnel to administer such safeguards. While some organisations are starting to work with people in the Lands to develop money management skills, this process is in its infancy, and complicated by factors such as cultural priorities and tradition."

These views were reiterated by the elders present at the Workshop relating to the NDIS, who were adamant that NPYWC should manage these services. While NPYWC currently manages funds for a limited number of clients, expanding to cover an increasing number of clients would depend on capacity and would require some preliminary assessment work. However, NPYWC endorses the statement by the ladies at the workshop that Anangu should not manage their own packages, and if NPYWC is unable to do this on their behalf, would strongly recommend the Agency manage those packages.

Project planning to support increased NDIS staff presence over time - NDIS Planner and LAC services in the short and long term and including potentially an expansion into the NPY Lands.

Timelines

In this report, attention has focussed on children 0-6 and 7-14 as at 1 July 2014 in the APY Lands. It is anticipated that the development of a list of potential clients whose families are prepared to engage with the NDIS will be an ongoing process, involving family visits as well as discussions with service providers in relation to individual children and to possibilities for service expansion and enhancement. The picture of the needs of children living with disability will become clearer in association with these discussions and as the list of potential clients expands. This process will be ongoing as the Scheme continues to roll out.

LAC Role

The role currently funded through NPY Women's Council is critical to the effectiveness of the rollout of the NDIS in the APY Lands, and will continue to be crucial for

  • encouraging people to engage with the Scheme,
  • providing case co-ordination,
  • introduce providers of services offered under the Scheme,
  • providing low-level support to people whose level of disability does not require intensive services as well as people who have signed up to the Scheme but continue to want occasional support

As indicated above, the exceptional situation of people living in the APY Lands means that services are best delivered through or in association with a culturally sensitive organization which has a long history in the area. NPY Women’s Council, an Aboriginal Corporation which has been working in the Lands for more than 30 years, fulfils both of these requirements. It has been extremely helpful to the project having a close association with NPY Disability workers and with the Child and Family Wellbeing Team as well as working under the umbrella of the reputation the Council has built up over time. In addition, there is established access to infrastructure for travel on the APY Lands.
In the longer term, a similar need exists for the NDIS to work through or in close association with an organization such as NPY Women’s Council, and similar benefits would accrue.

Advise on community messaging in relation to the NDIS

Community messaging relating to the NDIS needs to be two-pronged. While service providers need a clear statement of the role of the NDIS and its operations in the Lands, possibly in poster and brochure form, Anangu base their knowledge in word of mouth rather than going to written sources for information.

For workers talking to Anangu, misunderstandings can occur easily and this possibility needs to be borne in mind. There are several likely causes. Language is one. Anangu understanding of English varies widely from person to person, and people will rarely ask for clarification. Consequently any explanations in English need to use simple, clear language, and wherever possible, discussions should involve a malpa or co-worker who does have a good understanding of the situation. Cultural factors can also contribute to misunderstandings. Information needs to be transparent and honest, and it is important to be clear about the difference between talking about something that is definite and something that may occur. Anangu often expect things to happen immediately, and timeframes need to be emphasised.

Word of mouth messaging can be encouraged by

  • Using malpa who will have a good understanding of the NDIS when talking within their own communities
  • Further workshops increasing the number of strong women who have a good understanding of the NDIS and its processes
  • Workers/LACs talking to families, anangu workers (e.g. in family centres) in community
  • Talking to service providers
    • As mentioned above, service providers- clinics, schools, 0-3 centres, family centres- might benefit from having a poster on display with simple, basic messages and contact details as a memory-jogger for when staff are talking to Anangu. The designs produced at the October 2013 workshop could provide a basis for these
    • A similar poster could be on display in some Alice Springs locations such as Tangantyere Aged and Disability, Alice Springs Hospital, and the aboriginal hostels, but for these locations, the poster would have to be extremely clear about applying to people from the APY Lands only

Anangu are a very practical people and are more comfortable talking about the concrete than the abstract. In talking about ideas, pictures can be helpful, and at the workshop in October, the ladies developed several potential posters reflecting their understanding of some of the key concepts relating to the NDIS. NPY printed these in order to have resources available for display at community meetings. However the next step depends on having a decision on where the contact point will be for both Anangu and service providers after the project funding finishes as contacts will be an important feature of posters.

Provide advice on a plan to integrate personal support as a health career

Anangu Staff

Anangu from remote communities are not work-ready according to mainstream concepts of working. Priority is always given to family rather than workplace, even when the issue concerned may appear unimportant to mainstream eyes. There is a high level of absenteeism, aggravated by the mobile lifestyle of people living on the Lands.

In addition, Anangu have definite rules as to who is appropriate to hold what knowledge, so that the presence of an Anangu carer or worker may exacerbate shame felt by a child’s mother. This has shown out in demands for a ‘white carer’ from some disability clients on the Lands, but otherwise limits the caring role to family members chosen by the family.

Personal support in ADLs is seen by Anangu as a responsibility belonging to specific family members. However, within the family, many Anangu consider that payment for caring should be given to the most culturally important person, regardless of whether they are actually carrying out the tasks of caring for someone. This context makes it more difficult for families to accept that other Anangu might be paid for performing this work.

Despite these factors, Anangu in community are frequently employed in, for example, Malparara worker, Aboriginal Education Worker, Aboriginal Health Worker and HACC meal provider roles. Anangu filling these roles require training, support and supervision.  Employers and supervisors need to maintain an awareness of the fact that Anangu speak English as a second, third or fourth language and misunderstandings are likely to arise. Absenteeism is a frequent issue. Training must take account of differences in language, cultural and historical beliefs and lifestyle priorities.

There are a number of potential benefits to be obtained from training and employing Anangu in positions where they can be supervised and supported. If the person in the supervision and support role works with a number of trainees, this process could be quite cost-effective. However, training Anangu to provide, for instance, speech therapy support might require recasting such support so that Anangu ways of responding to children are incorporated into the process.

The employer/supervisor needs to support the employee’s work skills and training on an ongoing basis, as well as to ensure that safe and appropriate work practices are followed.  For instance, in relation to the possibility of equipment repairs, it is imperative that work is timely and performed to a standard which will ensure equipment users’ safety. The Regional Anangu Services Aboriginal Corporation works with Skill Hire (WA) to train and employ Anangu in this way.

Any plan for employment of community members in roles such as personal support workers or equipment repairers needs to take these factors into account and consider their implications for the workplace.

Barriers to recruitment and retention of non-indigenous staff

Issues relating to staffing in Central Australia and particularly in remote communities have been discussed briefly above (see p 8) and may be summarised as

  • The isolation and remoteness of work. It is a long drive on a combination of dirt roads and highways to reach the nearest town with services such as dental, specialist medical etc. The mail plane arrives once weekly. Other airports are hundreds of kilometres distant.
  • The lack of infrastructure- housing is limited, schooling options for children are limited, childcare is non-existent. Most communities have one store (some have none) with a narrow but expensive range of goods. Recreational items such as books, films and music have to be obtained elsewhere.
  • There are few social life options for down time. The number of ‘fly in fly out’ services means there are few long term non-indigenous workers
  • Personal safety. Violence is common in communities and people can be threatened. Houses are frequently broken into when owners are absent.

Anangu expect workers to be available 24 hours and workers need to develop boundaries around this.

Lessons learned during the contract period

The primary lessons from the project are as follows:

Many Anangu parents are not yet ready to acknowledge that their children may have a disability

Anangu need to develop a trusting relationship with a worker in order to engage with a new service such as the NDIS. They need to maintain this relationship with a representative of the service on an ongoing basis.

Anangu engagement with the service occurs at a pace defined by Anangu priorities and processes rather than in accordance with Government deadlines.

Anangu relate to organisations through face to face meetings and worker relationships rather than by phone or online.

The primary concern of Anangu is to continue living within culture on the Lands, close to family, regardless of disability or care arrangements.

Recommendations

Summary

This project recommends a two-pronged approach to future work with people with a disability from the APY Lands. Appropriate services should be provided for people who are enrolled in the Scheme and who have packages. A full time position is also needed which will visit communities regularly and be responsible for engaging with potential and enrolled clients. Anangu will not engage with the NDIS unless they are able to develop a respectful and trusting relationship with a worker. This position should sit within NPYWC, and should be associated with brokerage in order to respond to participants’ urgent needs. This worker would also provide community support for people with less severe disabilities but who require occasional assistance.

Detailed Recommendations

That a position be funded to work with Anangu who may be eligible for assistance through the Scheme, and enable the development of the relationship of trust and support which will assist Anangu to engage with the NDIS.

That this position be based with NPYWC as an aboriginal organisation with strong long term connections with the APY Lands.

That brokerage be available with this position in order to respond immediately and appropriately to crises in everyday life.

That the Access Request Form be simplified for use in the APY Lands.

That Participant Plans be presented clearly and simply, and specify services and equipment rather than funding amounts.

That once people have signed up with the NDIS, low level case management style support be available either as part of their package or through a funded position which will visit the Lands regularly, keep in touch with the client and their family, and provide a trusted point of contact for any issues that may arise.

That people with low level disability needs be given ongoing in-community support through the funded position, including brokerage for items such as bedding. This represents an acknowledgement of their particularly vulnerable status within the community.

That as well as funding individuals through packages, generic early intervention take place in the 0-3 centres and pre-school classes in relation to three key areas of need:

  • Delays in speech (children in need noted in a number of communities)
  • Trauma- through regular visits by a play therapist
  • Work with families in relation to hearing issues.

The regular presence of therapists would facilitate work with individual older students as required.

That provision be made for disability clients to access respite as this is crucial in keeping them on the Lands.

That a mechanism be developed so that service providers visiting the Lands are not penalised when a participant is unexpectedly absent from community.

That additional in depth workshops be held at NPYWC in Alice Springs for senior Anangu in order to increase the number of community members who have a good understanding of the role and operation of the NDIS.

That when a contact person is known, posters using the artwork from the workshop be printed and distributed by the worker to service providers.

Top of page