Kenneth Jenkins Oration, delivered by Andrea Mason

Kenneth Jenkins Oration, delivered by Andrea Mason

Indigenous Affairs Indigenous Advisory Council
Tuesday, 05 December 2017

Andrea Mason - CEO, NPY Women’s Council, IAC Co-chair

National Disability Services

I would like to begin by acknowledging the Gadigal people of the Eora nation, the traditional custodians of the lands on which we gather here today, and pay my respects to their Elders past and present. I would like to thank them for their love of country, culture and community.

I would like to extend that respect to Aboriginal and Torres Strait Islander people in the room today.

I acknowledge Joan McKenna-Kerr President of the NDS Board and Ken Baker AM, CEO of Disability Service Australia.

Ken, I would like to thank you for the opportunity to deliver this speech to you today.

Kenneth Jenkins, which this Oration commemorates, was a man who I suspect was influenced by the world around him; he was influenced by what he saw as well as what he didn’t see.  

One of my favourite quotes is from the movie Kingdom of Heaven. In the film King Baldwin the Fourth, still the reigning King but becoming weaker due to leprosy, says to young Balian, “A king may move a man, a father may claim a son, but that man can also move himself, and only then does that man truly begin his own game”.  

Kenneth Jenkins strikes me to be a man who knew his own mind, who saw the world how it should be, and set his mind to be someone to work to see the change happen.  In this regard, Kenneth played his own game and today he is still advocating this motivation through my words.

My personal vision is to live in a country where the whole of me can flourish. Me, Andrea Mason, a Ngaanyatjarra/Kronie woman from central Australia, who thinks she is the luckiest person to be born to the oldest living continuing family unit on the planet.

I am passionate about women and justice and I am drawn to any Australian who is willing to give Aboriginal and Torres Strait Islanders a fair go, through a respectful relationship, to improve life opportunities and life chances.  

Australia is the only Commonwealth country in the world to not have a treaty with its first peoples. What does this say about our country, humanity, values and interests?  Because of this, all Australians live in a prosperous country but it is not a Kingdom of conscious as Balian talked about in the movie I just referred to. This requires truth telling, and a resetting of the relationship beyond this.

This reality sits with me every day, and I use it as motivation to change circumstances for the better, for my community as well as my brothers and sisters in the broader Australian community. Importantly, this motivation comes from my sovereignty, it anchors me and sustains me.

I have had a privileged life, I have worked with some of this country’s great thinkers, and I have to say the best are found in the desert regions of the Ngaanyatjarra Pitjantjatjara Yankunytjatjara Lands.

I have seen the impact of government policies in central Australia, some of it has been good and other decisions have been devastating.

In 2010, after two years in NPY Women’s Council, I started to shift my attention to look outside of government for a better quality of “fair go”. In 2013 I was introduced to an organisation called Jawun and through this partnership, I started to see how much more good I could achieve with indigenous led ideas and working with leaders from the corporate, government and community sectors. 

My thoughts this morning include my reflections over many years working in and outside of government, as CEO of NPY Women’s Council, as well as some key learning over the past nine months during my time in Westpac undertaking a secondment to get a better understanding of the operating rhythm of the banking sector and in turn to add to my business acumen.

I want to discuss with you a few things this morning:

  • what the demand is for the NDIS,  so what the data shows us in Indigenous communities, what we know about why the demand has not been met; how well the NDIS is or is not responding to this demand i.e., how does this fit with people’s expectations/life goals?
  • Does it reflect the Aboriginal and Torres Strait Islander governance and business operating rhythm? and what is the way forward? 

As a representative from the Ngaanyatjarra Pitjantjatjara Yankunytjatjara Lands in central Australia, I can make assertions about the issues faced in my communities and some of the barriers and opportunities we face in light of the NDIS.

At the outset, I need to acknowledge that the collection of data is problematic in Indigenous communities. And what the data we do have is showing us, is that there are many barriers to the successful provision of NDIS services.

We also know that there are many people in community who are already caring for family members with a disability but this is unpaid and unrecognised.

The driver of change should be an attempt to synchronise the NDIS with family members who are already providing a service. Links could be made to government initiatives like working within the Community Development Program (CDP) in remote areas, and integrating this into the NDIS system.

But before I start, I wanted to give you my perspective on what I call the Aboriginal and Torres Strait islander governance and business operating rhythm – it is something that I believe needs to be reflected in how we deliver services to Indigenous communities under the NDIS.

This country, comprising its heavens and lands and seas, has had its own governance and business operating rhythm humming away for 65,000 years.  I saw this rhythm as a young person growing up in Kalgoorlie and Adelaide. I observed senior men and women from my family and the Aboriginal community in general, draw on a motivation that came from a particular place of knowledge and authority, to challenge and change the way things were done. 

They were seeing injustice and they were being guided by the law and lore that they had heard repeated to them through hundreds of conversations during their life.

In Australia, we proudly acknowledge the magnitude of this rhythm when we hear how long Aboriginal people have walked this country, it’s applauded and honoured.

Since joining NPY Women’s Council to work in my first Aboriginal controlled organisation, I have seen first-hand the benefit of being led by women who know this rhythm intimately and see them live their identity through the foundations of this rhythm, country, family, language and law/lore.

And because this rhythm owns them and they own this rhythm, there was no deliberate strategy and product discussion when the organisation was formed in 1980, it was done as a natural extension of who they were which included the rhythm that was passed down to them from the previous generation.

And as NPY Women’s Council grew, new opportunities were synchronised to this rhythm, such as case management for people in our region with a disability, disability advocacy and respite for carers.  

This operating rhythm did not stop in 1788, 1901 or 1967, it is here today guiding organisations like NPY Women’s Council and First Peoples Disability Network, it enables us to live out our sovereignty as well as adapt and take on new opportunities all of which we seek to synchronise to our rhythm.

The rhythm was here before Reconciliation Action Plans before the National Apology, the Closing the Gap campaign and the NDIS.

At its heart, this Aboriginal and Torres Strait Islander governance and business operating rhythm has set structures for social, economic, cultural and political order and its foundation has a bias that leans towards and elevates cultural embrace. At its basic shape and form, it offers a list of checks for those inside as well as outside the rhythm. It’s like a risk management tool or guidelines to ensure due diligence is followed.

Let’s look at an example, let’s look at a young Aboriginal women, who I will call Kayala. Kayala has country, identified through her mother and father, she has language, family and law/lore. These are predetermined and set for Kayala, her place and identity, frame her understanding of security and safety.  Her place is referenced by men who provide security and women who provide safety and in the modern iteration Kayala seeks to sync these laws and lore to Australian laws.

Too much compliance to Australian laws regarding security undermines men’s responsibility to fulfil their role through men’s law. Too much reliance on outside agencies or legal instruments to meet gaps in initiatives to create safety undermines the role and structure set by women. These laws must also be consistent with Australian law especially in relation to conduct.

These systems are to work with men’s law and women’s law, and not undermine these responsibilities in the modern iteration of the operating rhythm.

On some days, one law has prominence or preference over another, on other days they sync differently. For Kayala they are the sum parts of her security and safety. 

Because there are three domains in her governance and business operating rhythm, she has to consider ways to connect the threads of her life through these domains.

Story telling is the way that works best to do this, metaphors through law/lore helps others to connect to her personal and public life and through story telling leaders in these domains connect to her.

And with these laws Kayala seeks to adapt her rhythm to her community and they to hers, sometimes this is done internally and sometimes with external advice.  

Kayala has paralysis of the legs and lower body. She has had this disability since she was a teenager.   NPY Women’s Council contacted her to talk about a new project to support people with disabilities. From Kayala’s perspective, she is happy to work with the women, they understand her life on the Lands.

Through death and illness she has seen the women support her and her family and community. Where gaps in security and safety have appeared in her life, she has seen men and women in time respond and address these gaps. 

The women finish the design of the new service ensuing it connects to the NPY governance and business operating rhythm and they make sure the corporate governance works in sync with it.

Then much later a new program knocks on her door it’s called the NDIS. NPY Women’s Council is there again, strongly advocating for this new program to be in sync with the operating rhythm.

I believe Aboriginal and Torres Strait Islanders desire to see non-Indigenous Australians understand this operating rhythm, to see merit in it and through this effort, show leadership to create a space for it in the areas they work and lead. 

I encourage such discussions to happen in this sector and during the conference, because this will future proof the success of the NDIS in regions where Aboriginal and Torres Strait Islanders with a disability reside with their families and community. 

This year, I’ve taken time away from my role in NPY Women’s Council to work in the Westpac Group in St George Business Banking.   It has been through this time and as well as Co-Chair of the Prime Minister’s Advisory Council, that I have seen the need for this operating rhythm to be documented so that more leaders have an understanding of it. I am hoping to do this with others in early 2018.

I wanted to share with you the outcomes of an NDIS roundtable that was hosted by the Prime Minister’s Indigenous Advisory Council earlier this year, with over thirty representatives from across government and community organisations present. We discussed the opportunities provided by the rollout of the NDIS - some of you here today also participated in that discussion.

Participants agreed that one of the Core guiding principles underpinning this work would be: Nothing about us without us. Done with us not for us.

This is reflective of the Prime Minister’s Closing the Gap statement earlier this year when he quoted my colleague Dr Chris Sarra, committing to ‘Do things with us, not to us’. This is an important but missing element in the rollout of the NDIS.

Participants saw immense opportunity for Indigenous peoples, communities, organisations and businesses under the NDIS to grow training, employment and business and the systems required to enable these – the goal would be to have sustainable, responsive and culturally appropriate services employing local people who are trained locally, who know the community and the operating rhythm of Aboriginal and Torres Strait Islander communities and families. The modern iteration to the model would be for workers and organisations to understand and deliver the fundamentals of great customer service, with the rhythm as the basis of this approach.

We also felt it was important to pursue advocacy for our peoples.  Aboriginal and Torres Strait Islander people must have a voice in the roll out of the NDIS and the development of policy affecting people with a disability. We suggested that at a minimum this should occur by way of:

  • an Indigenous steering group which provides advice to the NDIA on the roll out of the NDIS.
  • an Indigenous group that directly advises on disability policy reform.

I understand that work to progress this is being undertaken by the First Peoples Disability Network and I encourage others to support their efforts should the opportunity arise.

Everyone here today knows that the National Disability Insurance Scheme (NDIS) is a new scheme designed to change the way that support and care are provided to people with a disability who have substantially reduced functional capacity or psychosocial functioning.

To be eligible for the NDIS, people must be under 65-years of age and have a permanent disability that significantly affects their ability to take part in everyday activities. As an insurance scheme, the NDIS takes a lifetime approach, investing in people with disability early to improve their outcomes later in life.

The NDIS is currently being rolled out across Australia, with full implementation expected by June 2020.

At full scheme, about 475,000 people, including approximately 28,000[1] Aboriginal and Torres Strait Islander people with a disability will receive individualised support, at an estimated cost of $22 billion in the first year of full operation.

There are different views about the actual number of Aboriginal and Torres Strait Islander people with a disability, but it is approximately twice that of non-Indigenous people and may actually be higher due to under reporting.

New data from the National Aboriginal and Torres Strait Islander Social Survey 2014-15 concluded that 7.1% of all Aboriginal and Torres Strait Islander people have severe or profound disability, of these some 39,500 people 15 years and over have a severe or profound disability.

But if children, people in prison, or the homeless population were taken into account, it is possible that Aboriginal and Torres Strait Islander people could comprise more than 7% of the total of NDIS participants.

So there are significant numbers of our people who require assistance under the scheme, but there are also many barriers to taking up the support available.

Aboriginal and Torres Strait Islander people living with a disability face multiple barriers and disadvantages preventing them from leading fulfilling lives. Some of the statistics show they are:

  • almost 14 times more likely to be imprisoned than the rest of the population;
  • less likely to be employed: the employment rate is only 13% compared to 51% for Indigenous people without disability; and
  • less likely to complete year 12 high school than Indigenous people without disability.

These statistics show the need for more support and assistance to be provided to Indigenous people with a disability to prevent or at least reduce rates of imprisonment, facilitate employment or complete their education.

From the perspective of my organisation in central Australia I know what these barriers look like:

  • Some Ngaanyatjarra, Pitjantjatjara Yankunytjatjara parents are not yet ready to acknowledge that their children may have a disability, Anangu (people) 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 should occur at a pace defined by Anangu priorities and processes rather than in accordance with Government deadlines, as I have mentioned earlier.
  • Anangu relate to organisations through face to face meetings and worker relationships rather than by phone or online.

And of course there are cultural factors which affect the way families interact and issues to do with language and the fact that an ancient oral culture does not transmute easily into a world of forms and complex processes.

These barriers are in and of themselves not great, but cumulatively reflect a clear need for systems change and a different approach.

If we genuinely want Ngaanyatjarra, Pitjantjatjara Yankunytjatjara people with a disability to have the best opportunities we can provide, to help them lead a fulfilling life, then we need to look critically at how services are delivered within the framework of the NDIS and if the model can be adapted to meet our needs.

In relation to funding, currently there are a number of children on the Lands with NDIS funding who have been unable to draw on their funding due to the lack of services in the region.

If NDIS data for all NPY Lands participants was compared to overall NDIS data, it would highlight just how disadvantaged people with disability on the Lands are, compared to NDIS participants elsewhere in Australia.

Engagement with potential NDIS participants on the Lands regarding about what the NDIS can provide is challenging as many are more focussed on having their basic needs met like access to food, swags, blankets and clothing - items not considered “reasonable and necessary” under the NDIS legislation.

Living Standards on the Lands are often low compared to mainstream Australia due to a complex range of factors including the cost of living, lack of education, jobs and opportunities.

As a result it is not unusual for families to be struggling financially or to be preoccupied with trying to ensure the basics necessities of life are met.

Consequently, individuals and families from the NPY Lands have been reluctant to become NDIS participants because they cannot access “Proper help” through their NDIS funding.

“Proper Help” requires listening to the needs and concerns of the family and addressing the most urgent of those needs. For example, if there is not enough food in the house helping people to access Emergency Relief Funding or providing food some other way is of the highest priority; it is not appropriate to say to a family that doesn’t have enough food that you cannot help.

It would also not be reasonable to expect a family in that situation to be interested in talking about what the NDIS can do to support the family member with a disability.

I recognise that this falls outside the scope of the NDIS but it is a reality that needs to be addressed before many Aboriginal people will access the NDIS.  

NDIS also needs to recognise that an Aboriginal person living in a remote area will have life goals that are very different, and don’t necessarily ‘fit’ NDIS’s expectation. For example, if an Aboriginal person in a remote community has goals that align to their operating rhythm, include visiting family, going bush (hunting/bush tucker collecting), practising lore – art/music/dance, language, cultural identity, traditional healing, then these are valid goals that should be funded in their plan and assessed against the operating rhythm.

Yes, the goals for Aboriginal people living in the desert might be completely different from what NDIS are used to funding, but they are no less important. A remote/Aboriginal lens should be applied to the ‘reasonable & necessary’ clause. 

If this is not given consideration then NDIS may find itself delivering a less synergistic model resulting in greater discord and hurt in Aboriginal and Torres Strait Islanders communities.

As the Aboriginal and Torres Strait Islander operating rhythm is based on conduct, for example what you do, what you don’t do, what you say and what you don’t say, based on this,  conduct has significant scope to create offence and the target is very big.

In regards to workforce, services will be needed wherever there are eligible people with disability, including remote communities, and this offers jobseekers viable career prospects within their community.

Increasing the number of Indigenous service providers and workers in the disability sector will be a key factor for the success of the NDIS for Indigenous Australians.

It will not only increase Indigenous social and economic participation but will also improve access to culturally appropriate disability care for Indigenous NDIS participants. This is a long term process.

There are also challenges in respect to the design of the NDIS in Aboriginal communities and the importance and need of service providers working and being located in community longer term to gain mutual respect and trust.

I would now like to talk about the way forward.

A future approach to working with people with a disability from the NPY Lands could involve:

  • Provision of appropriate services for people enrolled in the Scheme and who have packages.
  • A full time liaison officer who could develop respectful, trusting relationships with communities and be responsible for engaging with potential and enrolled clients about the NDIS. This should be associated with brokerage in order to respond to participants’ urgent needs. This officer could also provide community support for people with less severe disabilities but who require occasional assistance.

For any success in remote communities, a one-size-fits-all approach will not work. There is a need to develop on-country models: key elements of on-country models should include:

  • Segmenting locations by urban, remote and very remote.
  • Leveraging the existing Indigenous service system infrastructure including Aboriginal Medical Services, their workforces and systems.
  • Building the local Indigenous workforce to design and deliver services under the scheme including leveraging CDP.
  • Access to market intelligence about current and future demand in communities.
  • Working with local organisations to develop backend administrative support and physical workspaces for small businesses and sole traders.
  • Information and assistance to help participant’s pool funds for block purchasing.
  • In remote locations with sole providers, choice will be a function of how a service is delivered rather than which agency delivers it.
  • Assistance for Indigenous practitioners to register as a provider.
  • Register of Indigenous providers to assist with culturally competent procurement.

If these actions are implemented, an approach that facilitates and supports an Indigenous governance and business operating rhythm I believe would be realised.  

In closing, while not without its challenges, the NDIS provides significant opportunities in remote Australia.

It is important that we continue to push for change – it is an area that will only grow over time, an area where if we invest our energy now, we can carve out secure businesses and build a workforce with sought after skills into the future.

Supports for people to enter and apply for the NDIS also need to be bolstered to ensure eligible people can secure the evidence needed and get assistance to navigate their way into the NDIS. This may include advocacy services, health services and other services that interact with Aboriginal and Torres Strait Islander people such as early childhood centres.

It is really important for our people to have culturally appropriate services and supports. To be able to do this, it is essential to have a comprehensive understanding of the challenges facing people with disability in remote Central Australia and consider ways that the NDIS might be able to respond proactively and provide appropriate support.

I wonder if the system is up to the challenge of adopting an Aboriginal and Torres Strait Islander governance and business operating rhythm for the delivery of these services?

I believe it is possible to achieve this with flexibility and understanding.

 

References

Ngaanyatjarra Pitjantjatjara Yankunytjatjara Women’s Council: Assisting Indigenous Australians in the Anangu Pitjantjatjara Yankunytjatjara (APY) Lands to Benefit from the National Disability Insurance Scheme (NDIS): Final Report September 2014   

 

[1] NDIA