NDIS looks mighty different from here

There are many well-known challenges that NDIS participants and support coordinators are currently facing across the country. Funding uncertainty, changes to plan reviews and extensive waiting lists for key services are a start.

But what’s it like for people living and working in remote Australia? Let’s take a look through the lens of the Machado-Joseph Disease Foundation (MJDF) on Groote Eylandt, a 50-by-60 km island on the lands of the Anindilyakwa people in Australia’s Northern Territory.

The MJDF is a non-profit organisation that was established in 2008 and works in a relationship-based approach with its local Aboriginal community that honours the principal of ‘Our Way’. That is, it values a ‘two-way’ approach, where staff and clients are giving to and learning from each other on an equal footing, and everyone is seen contributing and honouring the diverse cultural and linguistic needs of families on the island.

So, What’s It Really Like Working in a Remote Community?

This Ain’t the City

Remote communities often present very real structural and logistical limitations to what is and is not possible for NDIS participants. Even if someone receives the necessary funding in their plan to meet their goals and support needs, this does not mean that they can necessarily use that funding. For example, there is a set limit to the housing available for staff who can live on Groote Eylandt. If a member of the community has a significant increase in their support needs, it is not as simple as increasing the available funded support on the island, due to lack of housing for those additional staff. For some, this may mean that the support they require genuinely cannot be provided, and a move to the mainland (such as Darwin) may be the only safe option.

Sing It Like Ben Lee: We Are All in This Together

It is very clear that without separate and non-related funding streams (outside the NDIS) being available on Groote Eylandt, delivery of NDIS-funded services would be impossible. For example, the South 32 mining company has a mine on Groote called GEMCO, and it is GEMCO that provides a house for MJDF staff members to live on Groote. Without this housing, there could be no staff, and there could be no NDIS service delivery. The MJDF also receives funding and in-kind support from other key Groote organisations.

Alongside NDIS, health and mainstream services, it is the local council that provides meals on wheels that some NDIS participants are funded to receive.

Boundaries Can Look Quite Different

A ‘day in the life’ at the MJDF could include community transport (local public transport is not wheelchair accessible), in-home meal prep, domestic assistance, ordering someone’s replacement glasses, assisting a participant’s son with their Centrelink questions, assisting a participant and their family to attend funerals and a community access worker. Some of these activities and supports are funded by an NDIS participant’s plan; however, the multiple income streams that the MJDF is able to access enable flexibility to provide support that is not funded by the NDIS but is still required.

Conversations about role boundaries and role definitions can be very different from those in a metro area. So sure, it’s not for everyone. However, if this sounds up-your-alley, the connection to community, trust, ‘two-way’ learning and respect you are then part of can feel like having a whole other family.

For example, the time, conversations and interactions that happen when acting in a direct support worker role add so much depth, rapport and understanding when acting for the same person in a support coordination role. Conflict of interest is not the primary concern here, but rather increased opportunities to work holistically with participants towards their goals and chosen lives while always maintaining respect for, and focus on, what is culturally appropriate and maintaining an alignment to the two-way approach of reciprocal learning. Having access to multiple funding streams enables an increased level of fluidity and flexibility in delivered supports, which can also shift the conversation from funding rules and boundaries to participant choice and day-to-day life.

Now, in case you are worried, this does not mean that the staff on Groote have no boundaries. The boundaries are just different. When done with mutual respect and clear communication, there can be a beautiful sense of community, purpose and meaningful collaboration. Team members at MJDF work closely with senior cultural advisor colleagues, who are local Aboriginal Elders in the community, for guidance and support as part of the two-way approach. This relationship is key for non-Aboriginal staff regarding what needs should and should not be prioritised, which is essential when workplace boundaries are more fluid and when cultural competency is so critically important.

Choice and Control Takes a Different Form

The reality of limited options in remote communities is real. On Groote Eylandt, participant choice is often limited by the logistics of which service providers are willing to travel to the island, if they are not already residents. For example, there are two physiotherapists and one podiatrist who live on Groote Eylandt, but there has not been a visit to Groote by a speech therapist since 2021, and the most recent quote for an urgent Occupational Therapy Functional Capacity Assessment was around $10,000, including travel from the mainland.

Despite choice and control being key to the implementation of the NDIS, there is a sense of pragmatism and acceptance of limitations when living remotely. In reality, many people in the community have continued to receive the same level of support they received before the NDIS rolled out, when the support they received was block funded; thus, the introduction of a new funding model has been much less significant than the community member having their needs met, regardless of how it may be funded.

It must also be said that the people who receive support from the MJDF are proud of their collective and community mindsets. The concept of ‘individualised funding’ doesn’t quite sit right, and the community will often work together to achieve ‘collective choice and control’.

When Telehealth Is Not Always the Answer

For some people who live remotely, telehealth has been a game changer, providing access to therapy and intervention that would otherwise not have been possible. However, it cannot be taken for granted as an option. For some people, the idea of therapy over the internet on a screen is awkward and often not culturally safe, as it is most likely going to be with someone that the member of the community does not know and has not been able to build a relationship with. Not to mention the fact that there is no internet connection at anyone’s home. Yep, you read that right. No one has internet at home, so home-based telehealth is not even an option.

Collaboration Is Essential

In some remote communities, it is common for different members of the community to lean on each other and come together with a shared commitment to participant outcomes. This is also sometimes a necessity, especially when a single organisation may not be able to operate in isolation.

Take one example from Groote Eylandt, where receiving NDIS funding was only half the battle, and creatively making it come to fruition was the fun (or tricky) part. One participant had funding approved for pre-prepared meals but lived on a smaller remote island adjacent to Groote. The local council Aged Care service on Groote could cook and prepare but was unable to deliver the meals to the smaller island. The NDIS-funded Support Coordinator collaborated with the local primary health clinic charter plane that attends this small island weekly, and they agreed to take a weekly esky of frozen meals across to the smaller island. Innovation and collaboration for the win!

Another example is when participants from Groote travel to Darwin for a period in Short Term Accommodation; they opportunistically use this time for specialist services that can’t be accessed on the island, such as equipment trials and continence nurse consults.

So, Does Everyone Have to Plan Manage Then?

Plan managing NDIS funds can mean an increase in flexibility and choice due to having the option to purchase support from non-registered service providers. It would seem that this would be an absolute necessity for people living in remote communities where registered providers are limited. However, it really depends on the remote community in which you live. On Groote Eylandt, there are only two disability service providers, both of which are NDIS registered, so most participants are agency or plan managed. If additional support is required, MJDF can and does sub-contract or directly employ these people to make it possible for the support to be funded by the NDIS.

Remote Does Not Have to Mean Isolated

The lessons we can learn through the lens of the MJDF on Groote can teach us that, despite often having access to fewer options and despite the very real staffing and access limitations, there can still be an immense sense of community and true collaboration between NDIS, Aged Care, mainstream support, informal support and community support. There can still be wonderful progress made towards participant outcomes, chosen lives, a real sense of belonging, mutual respect and learning.

Despite the very real challenges that people in metro and city areas are also facing, it is worth wondering what people in the city can learn from communities in remote parts of Australia. Are there untapped opportunities for collaboration? Are there solutions to goals that may be possible if multiple interfaces come together and work together more? One thing is very clear: no matter where we deliver or receive support, maintaining a strong community, delivering supports in a culturally competent way and working in a two-way approach can only enhance the potential for participant outcomes.