NDIS Review Conversation Series: Paper No. 8

Thinking about NDIS values: means versus ends

Key points

• The fundamental goal of the NDIS is to advance social and economic participation
• The value set of choice and control is not an end in itself; it is the means by which the value set of social and economic participation is achieved
• To achieve values consistency and coherence, choice and control should operate in the context of advancing authentic social and economic participation
• Therefore, the NDIS should not fund choices that work against advancing authentic social and economic participation

 

‘We desire a place within the community! This place is not just somewhere to lay down our heads, but a place which brings comfort and support with daily living, friendship, meaningful work, exciting recreation, spiritual renewal, relationships in which we can be ourselves freely with others. And out of this, great things may flourish... Perhaps then we will belong and our gifts (perhaps meagre, perhaps spectacular) freely shared. And from there will flow all the delights and tragedies of a life lived in the community, shaped not by exclusion and oppression but by everyday ordinariness (whatever that might be)!’

These words^[i] from a person living with disability in a submission to the consultation that produced the 2009 ‘Shut Out’ report crystalise the hopes of many for what a new national disability scheme could deliver. The disability community sought access to the same services, resources, and opportunities to participate in the social, cultural, and economic life of our society as other Australians enjoy. This meant having the same range of fully available options for a person to make genuine choices to enable them to live a meaningful life in the community on their own terms without segregation, exclusion, or discrimination. It is the thread that carried forward to the creation of the National Disability Insurance Scheme (NDIS) in 2013 as the mechanism that could underpin such a significant transformation in the lives of people living with disability for the benefit of not just them, but the whole Australian community.

This eighth paper in our NDIS Review Conversation Series explores the nature of the values that are supposed to define the NDIS and how it supports Australians living with disability. The Scheme is anchored on two key sets of values: choice and control, and social and economic participation. Each person’s exercise of choice and control over their life is consistent with a range of expressions of fundamental human rights, including Article 3 of the Convention on the Rights of Persons with Disabilities (UNCRPD).  Maximising the social and economic participation of people living with disability featured prominently in the Productivity Commission’s 2011 report on disability care and support as one of the key functions of a new scheme, as well as a significant justification in its cost-benefit analysis.^[ii] Importantly, both sets of values are listed as Objects of the National Disability Insurance Scheme Act 2013 (s3).

This paper sets out two main messages. First, the defence of choice at the expense of authentic social and economic participation will not deliver on the Scheme’s promise, therefore, the value set of choice and control should be understood in the context of achieving social and economic participation – not as an end in itself. Second, the Scheme must be recalibrated to achieve values consistency and cohesion whereby choices that do not deliver authentic social and economic participation are not supported or funded. However, before delving into these propositions, it is important to consider what the value sets mean, and the extent to which they are present in the NDIS currently.

Choice and control

The first value set is choice and control. There are two distinct ideas here. The first, choice, reflects the importance of having genuinely available options so the person can make a decision based on whichever option is the best fit for what is important to them. The second, control, reflects the importance of the person having central involvement in decisions affecting them so they have personal authorship of their life. It heralds the increasing consideration of methodologies termed ‘support for decision making’ (SDM) that assist those with differing cognitive capacity to be their own decision-maker rather than having a substitute decision-maker fulfilling this crucial role in their lives.

These two individual values go together, and both need to be available to the person. Having one and not the other is far less impactful. If a person has very few choices available to them, the presence of control will have little impact. An example of this in the NDIS is ‘thin markets’ where the participant may have a budget and decision-making jurisdiction, but the choice they want to make is not available, perhaps because they live in a rural or remote location. Similarly, a wide range of options is of less value to the person if someone else is making the decision about which option the person gets. Imagine being shown an extensive menu at a café but someone else decides what you get to eat.

Social and economic participation

The second value set in the Scheme is social and economic participation. Again, there are two distinct ideas here. Social participation refers to activities that grow connection and fellowship with other people. The importance of fellowship with other people is fundamental to our wellbeing. Therein lies the grails of love and belonging. Yet the phrase social participation seems inadequate. Most of us do not use the phrase social participation in our lives. Instead, we talk of going out, meeting new people, making friends, falling in love, joining clubs, and getting involved in the things we care about, be it dogs, books, the footy, climate change, or nice food. In these endeavours, we bring energy and passion, and are uplifted by that of others. We impart our wisdom, and we learn from others. Friends and acquaintances share mutual warmth with us. In other words, we give as much as we take.

In reflecting on the history of supports for people living with disability, service systems have typically separated them from non-disabled people, creating much smaller networks of connection, such that a person living with disability had far fewer opportunities to make ordinary connections in life. This in turn has an adverse impact on the extent of fellowship, the chances of finding love, and the prospects for a true sense of belonging. This history is summed up in two words by the title of the report ‘Shut Out’ that led to the National Disability Strategy 2010-2020 and the NDIS.

Economic participation refers to being productive in some way that is meaningful to the person and their community in the economy. That economic participation is also characterised by mutuality, by give and take. We give our labour and our skills and knowledge, and we take remuneration and a sense of contribution and fulfillment. For most Australians, economic participation is achieved through mainstream waged employment.

Scheme performance against these key value sets

If the Scheme declares a commitment to choice and control then, for that claim to be authentic, those values should be routinely evident in the Scheme’s practice. However, in its first 10 years, the Scheme has struggled to deliver choice and control to participants. For example, agency-managed participants have greater constraints on their options compared to participants opting to self-manage their supports. For further example, participants who were migrated into the NDIS from state-funded group house^[iii] or similar arrangements have their planning, and therefore their options, framed by an assumption their involvement in the current service model will continue; in other words, their budget allocation will be considered in the context of their colocation and sharing of funded supports with other participants living in the group house. For still another example, no Scheme participant has a choice of Local Area Coordinator (LAC), arguably the pivotal role for the participant’s success in the Scheme.

A similar analysis can be made of social and economic participation where these values should also be evident in the Scheme’s practice. However, the Scheme has not made strong progress. Social participation is currently being counted on the basis of hours spent in the community, but this does not discern between endeavours designed to grow ordinary connection and fellowship, and activities designed to pass time and group people living with disability together, reflecting, at best, a profound lack of imagination and, at worst, a waste of people’s lives and potential. Meanwhile, contrary to the mission-critical idea that the Scheme is an investment in outcomes for people living with disability, low levels of authentic waged employment persist among Scheme participants, as explained in our previous paper on this topic. Adding salt to that wound, Australian Disability Enterprises (ADEs) continue to be favoured, even though they seem better aligned with a value set that replaces the term social and economic participation with the term segregated and poverty-based participation.

For the Scheme’s integrity it is important the National Disability Insurance Agency (NDIA) find ways to strengthen the Scheme’s expression of its values. At the heart of values integrity is the idea that the values you claim (‘stated values’), are the same as the values you believe (‘felt values’), which are the same as the values evident in your decisions and actions (‘lived values’).^[iv] The only way for the Scheme to have values integrity, to truly advance, and defend, the value sets of choice and control and social and economic participation is to ensure these values are present in every aspect of Scheme practice.

The defence of choice at the cost of social and economic participation

The challenge with the pursuit of values integrity is the NDIA will be faced with many instances where a participant, or a participant’s family, or a participant’s service provider, might assert it is the person’s choice to stay in a day program, or sheltered workshop, and not to pursue mainstream employment; that it is their choice to stay in segregated housing and not pursue more ordinary, individual, inclusive alternatives; that it is the person’s choice to engage in more passive segregated social activities rather than connecting with other people in community life through ordinary valued roles. This can even extend to matters of daily living, where a service provider might argue it is a person’s choice not to rise until much later in the day, or not to bathe, and the like.

This presents the Scheme’s personnel with a values conundrum, where choice and control appear to be in direct conflict with social and economic participation. And based on the volume of segregated services the NDIA invests in (for example, group houses, ADEs, day programs, and similar), it seems that someone’s exercise of choice and control is winning out against the goal of authentic social and economic participation.

So, how might the Agency navigate this conundrum?

The difference between means and ends

We suggest a simple distinction. Our experience has been that when describing a good life, most people reach for ideas about family, friendship, not being lonely, having a fulfilling job, continuing to learn and grow, feeling valued, and fostering a sense of belonging. All of these are anchored on the take up of valued roles, or Citizenhood. Having choice and control is important because it helps bring these things about. Friends choose each other, people apply for courses, seek jobs, select hobbies, decide what foods they like, and so on. The decisions we make, anchored on the twin virtues of choice and control, play a key role in what then happens to us.

As such, this conundrum is a matter of means and ends. A good life is characterised by Citizenhood, or as the Scheme would describe it, social and economic participation. That is the Scheme’s true goal, which is why it is part of Australia’s Disability Strategy 2021-2031 intended to deliver inclusion.

If social and economic participation represents the Scheme’s ends, then choice and control represents part of the means by which the ends are accomplished. Therefore, choice and control operate in the context of social and economic participation, and should not be permitted to trump it. Otherwise, the Scheme is investing funds in services that are not advancing the Scheme’s goal, and that make no sense.

If still in doubt about which value set is most important, consider the name of the disability community consultation report that led to the creation of the NDIS. The report was not called ‘No Choice’ or ‘No Control’. It was called ‘Shut Out’, reflecting how people living with disability are shut out from the societal and economic opportunities available to most Australians; in other words, social and economic participation.

Recalibrating the Scheme

The Scheme needs to be reset in a way that provides a consistent approach to its claimed values. First, the value sets of choice and control and social and economic participation should feature in every Scheme policy and protocol and be at the heart of all training and all commissioning. This needs to be done in a way that is explicit and auditable. Through a ‘Values in Action’ project in 2016-17, we assisted several service providers to navigate a values integrity methodology, which included social audits at each provider where their services were observed through a values integrity lens. As a result, the agencies became aware of issues of values consistency and were then able to take steps to address these.^[v] The Scheme needs something similar. Only in this way can stakeholders be confident the Scheme’s stated values are also the ones it believes in, and acts on.

Second, those same policies and protocols should reflect how choice and control operate in the context of authentic social and economic participation. If a participant, or someone else in their life, wishes to assert a choice that intuitively or demonstrably works against the goal of social and economic participation, of authentic inclusion and the valued roles that underpin it, the NDIA should decline that choice. Every time.

Therein lies the values consistency and coherence the Scheme needs if it is to have any prospect of authentic success. The Scheme is fast approaching 600,000 participants, generating a complex mesh of many thousands of NDIA decisions every week. Establishing values consistency and coherence is the only way the NDIA can make sense of its work and deliver on its promise. Values consistency will also strengthen Scheme sustainability, because it will only be investing in things that are genuinely impactful.

These values, lived, are the foundation upon which Australia can become a world leader in investment in people living with disability. We want other nations to follow this lead, where the NDIS is so successful it transforms how every country thinks about disability support; not as welfare but as investment in people.

In the next Paper in our NDIS Review Conversation Series, we will focus on the future of the Information, Linkages, and Capacity Building (ILC) program and how it can best support improved outcomes for all Australians living with disability.

► Join the conversation at our To The POint webinar

Tell us what you think about NDIS values, share your ideas for reform, and help raise expectations about what the NDIS Review can deliver at our seventh To The POint webinar on Thursday 8 June 2023 at 12:30pm ACST (that is, 1pm AEST and 11am in the West). The webinar will run for 45 minutes and feature Robbi Williams, CEO at JFA Purple Orange, discussing this Paper. Attendees will have the opportunity to ask questions and provide their feedback on NDIS values. 

Register to join the To The POint webinar here.

Join the conversation on Facebook:

www.facebook.com/groups/tothepointpurpleorange/

Plus, follow us on Linkedin, Facebook, or Twitter: @JFAPurpleOrange

► Our NDIS Review Conversation Series

With the NDIS Review underway, JFA Purple Orange is publishing a series of papers to help stimulate conversations about the future of the Scheme. Each fortnight, we will tackle a different topic of reform that we think is critical to the work of the NDIS Review. We strongly believe that the NDIS is an essential component of ensuring that Australians living with disability get a fair go at what life has to offer, but it must be strengthened and sustained. We are committed to playing a constructive role in developing ideas for reform that ensure the Scheme delivers on its original promise.

Watch out for Paper No. 9: ILC a key to the Scheme’s success and sustainability on Tuesday 13 June 2023.

► About us

JFA Purple Orange is an independent social profit organisation based in South Australia that undertakes systemic policy analysis and advocacy across a range of issues affecting people living with disability and their families. We also host a range of peer networks for people living with disability including people living with intellectual disability, physical and sensory disability, younger people, people from culturally and linguistically diverse backgrounds, and people in regional South Australia. Our work is characterised by co-design and informed by a model called Citizenhood.

► Media enquiries

If you would like to republish this paper or interview Robbi Williams, CEO at JFA Purple Orange, about it, please contact Marissa on (08) 8373 3833 or email marissab@juliafarr.org.au.

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Footnotes

[i] Australian Government, 'Shut Out: The Experience of People with Disabilities and their Families in Australia’, 2009, p.viii, available at https://www.dss.gov.au/our-responsibilities/disability-and-carers/publications-articles/policy-research/shut-out-the-experience-of-people-with-disabilities-and-their-families-in-australia.