NDIA Accountability Project

Cultural safety and planning challenges for Aboriginal NDIS participants

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Submission to the NDIS Planning Senate Inquiry

SEPTEMBER 2019

Please note: In this document the word ‘Aboriginal’ refers to both Aboriginal and Torres Strait Islander people. Direct reference to Torres Strait Islander people and the word ‘Indigenous’ have been used where these are part of a title or direct quote.

Thank you for the opportunity to make this submission in response to the Senate’s inquiry into NDIS Planning.

We note that AHCSA has been involved in the development of the response from the National Aboriginal Community Controlled Health Organisation (NACCHO) and support those views and recommendation from a national point of view.

To increase the value of this submission to you, we have grouped the components as detailed on your website where we see they are inter-related:

A. Training and experience I. the experience, expertise and qualifications of planners II. the ability of planners to understand and address complex needs III. the ongoing training and professional development of planners

B. Planning in rural and remote areas I. the overall number of planners relative to the demand for plans II. participant involvement in planning processes and the efficacy of introducing draft plans

C. Planning efficiency I. the incidence, severity and impact of plan gaps We include a full list of recommendations at the end of this submission and are available to discuss in further detail if required.

Aboriginal Health Council of South Australia (AHCSA)

Formed in 1981, the Aboriginal Health Council of South Australia (AHCSA) is the peak body of South Australian Aboriginal community-controlled health services (ACCHS). AHCSA’s membership consists of one metro ACCHS, ten rural/remote ACCHSs and one substance misuse service.

Our primary role is to be the ‘health voice’ for all Aboriginal people in South Australia. We achieve this by advocating for the community and supporting workers with appropriate Aboriginal health programs based on a holistic perspective of health. AHCSA is a membership-based peak body with a leadership, watchdog, advocacy and sector support role, and a commitment to Aboriginal self-determination.

The Board of Directors and the Secretariat collectively form AHCSA which enables culturally appropriate and targeted approaches to program and service delivery. The role of the Secretariat is to undertake work directed by the Board on which all member organisations are represented.

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AHCSA constitutional objectives are:

  1. Operate as the peak body for Aboriginal health in South Australia

  2. Provide support to Members to improve health outcomes for all Aboriginal people of South Australia, promoting and advancing the Community’s commitment to physical, social and emotional wellbeing and quality of life

  3. Provide support to Members to build their capacity to create a strong and enduring Aboriginal Community Controlled Health Sector and contribute to improving the capacity of mainstream health services to respond appropriately to the health needs of the Aboriginal Community

within South Australia

  1. Provide and deliver chronic disease care services and programs
  2. Contribute to the development of a well-qualified and trained Aboriginal health sector workforce. For more information about AHCSA, please visit our website: www.ahcsa.org.au

Aboriginal people with a disability

Aboriginal people are twice as likely to experience a disability than other Australians (9% with a severe condition compared to 4% for non-Indigenous)1. Around 60,000 Aboriginal people in Australia have a significant disability that could make them eligible for NDIS support, representing 13% of the potential 460,000 NDIS participants. Currently 5% of NDIS participants are Aboriginal and Torres Strait Islander peoples which is significantly less than the percentage thought to have a significant disability.2 Whilst acknowledging that Aboriginal and Torres Strait Islander peoples only represent 3% of the total Australian population3, based on the data related to Aboriginal peoples with a significant disability and anecdotal evidence from ACCHSs regarding Aboriginal peoples’ access, it is evident they are under represented in the Scheme. Additionally, the percentage of NDIS participants who are Aboriginal and Torres Strait Islander is indicative of the numbers of Aboriginal and Torres Strait Islander peoples with plans but is not necessarily indicative of the extent to which Aboriginal and Torres Strait Islander peoples are receiving assistance under those plans as a result of services (or appropriate services) not being available4.

Preference for Aboriginal community controlled services

Evidence supports the notion that Aboriginal people will only access those services where they feel culturally safe and prefer to use Aboriginal community-controlled health services (ACCHSs) when available. Aboriginal community-control has its roots in Aboriginal peoples’ right to self-determination. An ACCHS has ongoing community input and ownership that is initiated by the community and is governed by an Aboriginal body which is elected by the community and delivers holistic and culturally appropriate services to the Aboriginal community. Culturally appropriate and holistic primary healthcare is provided by ACCHSs who provide about three million episodes of care each year for about 350,000 people5. Other research has shown ACCHSs are best placed to overcome the social and cultural determinants of health which can hinder Aboriginal people accessing the health care they need6. There is a clear preference for Aboriginal people to access community-controlled services disability, health or

1 Aboriginal and Torres Strait Islander Health Performance Framework 2017 report, section 1.14 Disability. 2 National Disability Insurance Scheme (2017) COAG Disability Reform Council Quarterly Report, 30 September 2017 pp24. 3 Australian Bureau of Statistics, National Aboriginal and Torres Strait Islander Social Survey, 2014-15. 4 Final report of the NDIS Capacity Building Project, NACCHO, July 2019 pp3. 5 Australian Institute of Health and Welfare 2018. Australia’s health 2018. Australia’s health series no. 16. AUS 221. Canberra: AIHW. 6 Davy, C. et al., Access to primary health care services for Indigenous people: A framework synthesis. International Journal for Equity in Health. 15:163.

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otherwise and will bypass mainstream services to access one where they are confident their cultural safety is guaranteed. More concerning is that Aboriginal and Torres Strait Islander peoples will not access a service (or at least put off accessing) if they perceive that, or have an experience where their cultural safety is compromised7. For this reason, ACCHSs are critical to the successful uptake and delivery of the NDIS to Aboriginal people8.

Training and experience

Whilst we acknowledge the effort of NDIA to develop and disseminate NDIS information using various Aboriginal languages, improve their rates of local Aboriginal employment and develop Reconciliation Action Plans (RAP), many of our communities continue to experience culturally inappropriate services. As a result Aboriginal People have disengaged from the Scheme.

The NDIA’s RAP vision is ‘to work alongside Aboriginal and Torres Strait Islander peoples and communities, to build and manage a world leading NDIS that provides Aboriginal and Torres Strait Islander communities with culturally-responsible and equitable access to both the Scheme and employment opportunities and provisions within the Agency’9. With specific reference to Action 5, there is a commitment to provide ‘continuous cultural learning opportunities’ and the development of a ‘cultural capability training program to be delivered to all employees’ with a target date of July 2019. Despite attempts, we have been unable to confirm if this training exists and whether staff have been provided with an opportunity to participate in this training. It is imperative that this training be provided to all NDIA staff and Planners as a matter of urgency to ensure the cultural safety of Aboriginal participants.

Furthermore, we recommend that the NDIA develop strategies to continue to build a strong Aboriginal workforce, in particular, Aboriginal Planners. It is well-documented that there is a higher success rate for government initiatives when Aboriginal people are involved and employed in meaningful roles.

Case Study 1

Aboriginal people employed as LAC.

On the Far West Coast of SA a local Aboriginal person was employed as an LAC.

Local organisations and participants reported that they felt, for the first time since the roll out began, that they were finally getting the information they needed due to having a local Aboriginal person employed:

  • It creates an element of ‘safety’ for Aboriginal people to engage

  • The staff member already understands culture and the local community; therefore is able to underpin their work with culture at heart.

  • Relationships already exist between the staff member and the community in which they work

  • They understand the level and medium of communication required for their community. Local organisations report that there was an increase in community participation and trust in the Scheme whilst this person was employed.

One of the noted gaps in the above example is the fact that there was one person who was required to service all participants, both Aboriginal and non-Aboriginal people. Due to the complexities involved in supporting Aboriginal People, it was reported that the person often felt that they were “torn between two

7 8 Aspin., C. et al., Strategic approaches to enhanced health service delivery for Aboriginal and Torres Strait Islander people with chronic illness: a qualitative study. BMC health Services Research., 12: 143. 8 Final report of the NDIS Capacity Building Project, NACCHO, July 2019 pp3 9 NDIS Innovate Reconciliation Action Plan, 2019 – 21

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worlds”. One, where they felt a cultural obligation to help and support their mob which often took up the majority of their time versus the western-world where there were key performance indicators and employer expectations to simultaneously service the broader community. A solution to this would be to have designated Aboriginal Planners employed to work specifically with Aboriginal People. We have seen the great success of Aboriginal-specific roles within health, such as Aboriginal Health Workers/Practitioners and Aboriginal Liaison Officers. There is significant evidence that supports the importance of these roles which are critical to delivering culturally appropriate care. They reduce communication gaps, improve follow-up practices, help with medical advice and provide cultural education.

In addition, Remote Community Connector roles were recently introduced as a result of a specific need within Aboriginal Communities to facilitate culturally appropriate engagement, improve understanding of the Scheme and enable better plans to be developed. According to the 2019-2021 RAP, the Agency reported employing 27 local Aboriginal people in the Northern Territory and 11 in Queensland to undertake these new roles, with two of the positions in the Torres Strait. The RAP also refers to the long-term aim to ‘increase the number of Remote Community Connectors in NSW, Far North Queensland and Western Australia’. AHCSA supports the increase to these positions across the nation, however, we are disappointed in there being no intention to increase the numbers of Remote Community Connectors across South Australia. In fact, two of our communities have had funding for these positions withdrawn within the last 12 months. There needs to be an investment in both Remote Community Connectors and in Aboriginal Planners.

Not only are our people receiving culturally inappropriate services and due to the lack of support systems (ie Remote Community Connectors), there have also been failures in the ability of Planners to understand the complex needs of Aboriginal People and their families. To give an example, in a family with complex needs there may be family members with a range of differing health needs, for example, with a disability, mental health issues, drug and alcohol problems, chronic conditions or be victims of abuse, all whilst attempting to navigate their way through the NDIS system. This family, or family member, could also be assisting in caring for other family members at the same time. They may also be experiencing financial issues, having trouble accessing education and training, finding employment, being homeless or at risk of homelessness, and may have come in contact with the legal or criminal justice system. Unfortunately in our experience, Planners are either too rigid in their questioning/interviews with participants or simply do not have the understanding and ability to support in these complex situations. As a solution to this, we would support the consideration of creating Specialist Planners who possess sound cultural skills as well as a clinical and/or social work background to work specifically with complex individuals or families. The identification and referral of such individuals and families could be undertaken by the Remote Community Connector. It is imperative that there be defined referral policies in place to facilitate these situations. Such policies and procedures are consistent with other departments such as Human Services and Child Protection.

Recommendations:

  1. Cultural training should be mandatory to all non-Aboriginal Planners
  2. Aboriginal-specific Planners must be in place
  3. Further investment in Remote Community Connectors within South Australia
  4. Consider the creation of Specialist Planners Planning in rural and remote areas

Even if Aboriginal people are successful in applying for, and meeting the eligibility criteria for the NDIS, many communities still face limitations in accessing the Scheme due to geographical location and the limited physical resources to meet demand.

Some of our remote communities across SA are waiting an average of nine months between having ‘Access Met’ before seeing a Planner.

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Case Study 1

Case Study 2

Plans in a remote community in SA

One of our remote communities in SA report that, as of September 2019 approximately 100 NDIS applications had been submitted from their community. Of the 100 applications, 80 people have had ‘access met’, however there are only (approximately) 26 participants with current plans in place.

This data shows that NDIA Planners are developing an average of two plans per month.

*Note: these figures were calculated by contacting Coordinators of Support who are currently servicing this community

This example is not uncommon across South Australia. Wait times are far too long, even when there are NDIA Planners who live within the community.

Furthermore, there is minimal pre-planning support available to participants. Over the past twelve months some of our services were able to successfully obtain ILC funding which enabled them to fill this gap, however, there is great concern about the sustainability of pre-planning support into the future.

Since the roll-out of the NDIS, there has been little progress in improving the health literacy of participants across the nation. Due to the structure of the Scheme and the strict rules around terminology, it has created a greater disadvantage to some of the most vulnerable people in our communities. We are regularly hearing feedback of poor planning and a lack of consideration for each aspect of a person’s life.

Case Study 3

Planning meeting

September 2019

A participant living in remote SA attended a pre-planning meeting. It was noted that the participant had no idea about the NDIS, so the Planner introduced themselves as ‘Disability’.

The participant is considered a ‘defined client’ and therefore the local health service was not required, or asked, to submit any supporting medical information, or any information about their social needs throughout the process. This has meant that the plan has now been developed on the basis of the ‘defined client’ process, which in this instance only took into account some of the participant’s medical history. Therefore, the participant received a plan on the basis of their requirements as an amputee, however the participant also requires psycho-social support which have not been addressed in the plan.

Although the participant was fortunate to have a representative from their local health service accompany them to the meeting, due to the participant being a ‘defined client’ there is no avenue available, either prior or during the Planning meeting, for the health service to provide additional information that would provide a holistic view of this client’s needs (ie functional capacity, housing, environmental, social and emotional wellbeing). The only avenue available for this participant to have this rectified is through a lengthy and complicated review process.

At the end of the Planning meeting the participant was asked to choose a Coordinator of Support (C.O.S.). This was done by showing the participant a poster with the names and associated logos of all available C.O.S’s and they were then asked to choose. There was no explanation as to what a C.O.S. is or what they can offer - or the difference between the various C.O.S’s available. It was at this point that the representative from the local health service pointed out that one of the organisations had never serviced that particular community, questioning people’s ability to make informed decisions with a lack of current or correct information. Page 5 of 7

We are also aware of instances where participants have attended an appointment with the NDIA, unaware of the purpose. Upon arrival, the participant was told it was a Planning meeting, at which point they requested it be postponed to allow them to better prepare. Even though this particular participant was located in an outer-metro area, and would therefore be easily accessible, the participant was told that the meeting needed to proceed and that “it would be fine”. As a result, the Plan developed failed to provide sufficient supports.

Recommendations:

  1. Long-term investment in compulsory support for pre-Planning. Participants must be provided with culturally safe options to discuss their goals and needs.

  2. Increase the number of Planners across Australia

  3. Improve communication pathways between NDIA Planners and local Aboriginal Community

Controlled Health Services

  1. Improved education within community regarding the NDIS Planning efficiency

There is an overwhelming amount of participants and service providers who report a severe lack of understanding when it comes to the interpretation, understanding and implementation of plans.

In a practical sense, we are seeing a lack of understanding of budgets and how participants could spend money over a twelve month period. An additional layer of confusion is added when there is more than one service provider involved in the participant’s care, where a support coordinator is not included in the plan. In our experience, Plan Managers often do not have the time to support participants through this process. There is also a lack of trust from Participants to discuss their plans with a Plan Manager or Support Coordinator because there has not been an investment in educating participants about people’s roles and how these types of positions or systems of support can complement their plans.

For participants living in rural and remote areas, block funding arrangements should be an option. This would enable a more realistic service delivery business model for those areas currently experiencing thin markets. An example of this is if there were ten participants living in a remote community, all requiring psycho-social support with each Plan totalling $100,000. We would suggest that by combining these ten plans, and therefore the funding, this would enable the community to employ a full-time social worker to work intensively with the participants. This is not currently an option and as a result, people are missing out on valuable services

Recommendations:

  1. Ongoing investment in Support Coordination

  2. A system that monitors participant Plans and can flag support workers when plans are not on track to be spent.

  3. Further investment in building the capacity of Aboriginal Communities to fully understand NDIS

  4. Undertake an analysis of the 29,034 people in South Australia currently benefiting from the NDIS10 to determine the number of participants who are fully utilising their plans. This would enable an evidence base for quality improvement.

  5. Consider enabling block funding arrangements for those in rural and remote areas. 10 https://www.ndis.gov.au/understanding/ndis-rollout/south-australia

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Full list of recommendations We recommend:

  1. Cultural training should be mandatory to all non-Aboriginal Planners

  2. Aboriginal specific Planners should be in place

  3. Further investment in Remote Community Connectors within South Australia

  4. Consider the creation of Specialist Planners

  5. Long-term investment in compulsory support for pre-Planning. Participants must be given culturally safe options to discuss their goals and needs.

  6. Increase the number of Planners across Australia

  7. Improve communication pathways between NDIA Planners and local Aboriginal Community

Controlled Health Services

  1. Long-term investment in compulsory support for pre-Planning. Participants must be provided with culturally safe options to discuss their goals and needs.

  2. Increase the number of Planners across Australia

  3. Improve communication pathways between NDIA Planners and local Aboriginal Community

Controlled Health Services

  1. Improved education within community regarding the NDIS

  2. Ongoing investment in Support Coordination

  3. A system that monitors participant Plans and can flag support workers when plans are not on track to be spent

  4. Further investment in building the capacity of Aboriginal Communities to fully understand NDIS

  5. Undertake an analysis of 29,034 people in South Australia currently benefiting from the NDIS11 to determine the number of participants who are fully utilising their plans. This would enable an evidence base for quality improvement.

11 https://www.ndis.gov.au/understanding/ndis-rollout/south-australia

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