NDIS Review Conversation Series: Paper No. 9

ILC a key to Scheme's success and sustainability

Key points

• The Productivity Commission envisaged a ‘coherent national system’ comprising three tiers, with each tier essential to the success of the others
• Individual plans and budgets alone cannot deliver the transformational impacts promised by the NDIS; an effective ILC program is critical to the success and sustainability of the Scheme
• The importance of ILC-type initiatives to the Scheme’s success justifies a larger funding allocation
• To maximise impact and fully leverage momentum, ILC-type initiatives should be funded for much longer periods than the current short-term approach allows
• ILC-type initiatives are a critical investment in the quality of individual decision-making, ensuring decisions are owned, informed, resourced, and supported

 

An individual plan under the National Disability Insurance Scheme (NDIS) was never intended to be the “only lifeboat in the ocean”, as Minister Bill Shorten has frequently highlighted^[1] since taking on the portfolio last year. Back in 2011, the Productivity Commission conceptualised a “coherent national system”^[2] encompassing multiple tiers whereby access to funded individualised supports for people with significant support needs would comprise ‘Tier 3’. ‘Tier 2’ was designated as providing information, referrals, and linkages to community supports and mainstream services to stimulate social capital for those with Tier 3 plans as well as the broader population of people living with disability. ‘Tier 1’ encapsulated the whole Australian population and society where the social and economic participation of everyone would be enabled and supported irrespective of the presence or acquisition of disability. Unfortunately, as Minister Shorten alludes to, individual plans have absorbed most of the attention and focus during the first decade of the Scheme. Yet, Tier 2 is essential to the success and sustainability of Tier 3 and to realising the benefits of full social and economic inclusion in line with the desired outcomes for Tier 1.

In the eighth paper in this NDIS Review Conversation Series, we argued the primary goal of the NDIS is to advance and defend authentic social and economic participation by people living with disability. In terms of the volume of financial investment, the Scheme is designed to achieve that goal primarily through individual participant budgets. This is based on the idea that participants will make potent choices about how to use their budgets within a vibrant provider ‘market’ and with stewardship by the National Disability Insurance Agency (NDIA) as Scheme administrator.

However, by itself this does not guarantee success. The availability of material resources – in this case an individual disability support budget – does not automatically mean people will move into good lives. This truth, that money does not automatically deliver happiness and fulfilment, can be found in many aspects of life, and the NDIS is no exception. This is evidenced by the persistent unemployment and social disconnection experienced by many Scheme participants. In this ninth paper of the Series, we outline some reasons for this, and how this can be addressed.

Overreliance on the market of individual supports

Arguably, one reason for this is the Scheme has appeared overly reliant on the notion that the ‘market’ will somehow deliver, which it has not. On the supply side of the market, it might have been hoped service providers would bring wisdom and innovation about the types of supports that can lift people into authentic social and economic participation and the sense of belonging this brings. But service providers are not generally in a strong position to deliver this. If they were, then arguably that wisdom would have been evident prior to the advent of the NDIS. In fact, to the contrary, the Scheme has failed to move the supply market on from the dominant pre-NDIS service forms, such as group houses, sheltered workshops, day programs, and the like. These service forms have not demonstrated competence at delivering authentic mainstream social and economic participation. Indeed, the main supply focus at the moment seems to be on how to make sure there will be enough people to show up for disability support work, rather than how those workers can best have an impact.

On the demand side of the market, it might have been hoped Scheme participants would be able to shape the market through what they ask for. While it is true people living with disability should be the most important narrators of their experiences and wishes, it is also true that a person’s view of what might work best for them can be constrained by the consequences of previous experiences. For many people living with disability, these previous experiences can include a toxic mix of segregated services, low expectations, exclusion, discrimination, and other trauma. These can and do affect how a person understands and assesses their choices, including a preference for familiar or ‘safe’ services.

More than an individual plan needed for transformational impacts

Therefore, by itself, an individual NDIS plan is not enough. Something else is needed to support impactful decisions by Scheme participants. This is where a different type of Scheme investment comes in, called the Information, Linkages, and Capacity Building (ILC) program. This is the core element^[3] of how governments have funded what the Productivity Commission originally described as Tier 2.

The idea behind ILC is it funds information services (‘information’), services that link people to other people, community, resources, and opportunities (‘linkages’), and services that assist people to grow into their potential (‘capacity-building’). For example, this can include the development of ‘peer networks’, where people living with disability are able to connect with each other, to make sense of information, to offer mutual support, and to learn from each other. Peer networks often result in their members being better-informed and developing stronger ideas about their life chances, their ambitions, and reflecting this in how they want to use their NDIS budgets. This increases the chances of budgets being used in a way that is impactful for the person and for the Scheme. Importantly, peer networks can include information and discussion about community resources and opportunities, increasing the chances people then take steps to access those resources and opportunities. This includes collective advocacy if those resources and opportunities have issues adversely affecting accessibility and welcome. Again, this can and does produce gains that relate to Scheme outcomes.

Investing in the work of disability community organisations can also play a significant role in increasing the chances of transformational benefits being realised. Indeed, the Productivity Commission’s 2011 report envisaged what it referred to as “disability support organisations (DSOs)” (not to be confused with direct service providers) would “facilitate greater innovation in the provision and coordination of services to people with disabilities.”^[4] Our agency’s research^[5] and experience over many years has also confirmed the importance of these organisations in the provision of information, facilitation of links to community supports and mainstream services, and building the capacity and confidence of Scheme participants, people living with disability, families and allies, and communities in realising transformation change.

ILC-funded initiatives are a key Scheme investment

ILC-funded initiatives are not only a benefit to Scheme participants but also to other people living with disability who are not eligible for an individual plan. Indeed, this type of investment can help reduce the need for some people living with disability to obtain an individual plan, because their life chances have improved, or been defended, by accessing ILC-funded initiatives.  This idea is echoed in other jurisdictions, including in the United Kingdom, through methodologies such as Community Led Support (CLS)^[6], that seek to meet people’s needs within mainstream community resources so they do not have to enter formal systems with all the labelling, the waiting, the bureaucracy, and similar, that go with it.

In this way, the ILC program should remind us that the Scheme is not just about a ‘market’ where people with individual budgets go and buy services and products. The use of market language in the Scheme and the NDIA is problematic because of the danger it reinforces the idea people living with disability are service recipients and nothing more. The Scheme is better seen as a mechanism for investing in people and communities.

ILC-funded work includes capacity-building initiatives that assist people and families to grow confidence, knowledge, and skill across a range of relevant matters including building a personal vision, employment, housing, education, accessing technology, using NDIS resources, developing leadership skills, and a host of other themes that can assist people to move forward with hope. These capacity-building initiatives also extend to the non-disabled community, especially to those who are gatekeepers of community resources and opportunities. This includes employers, local clubs, community groups, education providers, local government services, and so on. The more those people are assisted to become better-informed about disability and diversity, the more likely it is our communities will be more welcoming and inclusive.

For all the above reasons, the types of initiatives the ILC program funds can deliver critical outcomes for the disability community, for the Scheme, and for Australia’s ambitions to become a truly inclusive society. Without a framework for ILC-type initiatives, the NDIS will remain largely a ‘transactional benefits’ scheme, where participants buy conventional disability supports, services, and products, reinforcing a status of paid service recipiency. Instead, with a robust framework of ILC-type initiatives, the NDIS has a far better prospect of becoming a ‘transformational benefits’ scheme, where participants and other people living with disability are genuinely taking up valued membership in community life. We described the difference between transactional and transformational benefits in the third paper in this Series.

Reforms to boost and sustain ILC impacts

However, the ILC program currently is not having the extent of impact it could. There are several reasons for this. First, and perhaps most importantly, the funding allocated to the ILC program is tiny compared to the overall cost of the Scheme. Given the importance of ILC-funded initiatives to the Scheme’s success and sustainability, there needs to be a much larger allocation of funds to ILC.

Second, ILC funding is currently allocated to specific time-limited projects. While a project basis and a timeframe can be helpful in clarifying what will be delivered, by when, with what benefit, and to which people, it does not deliver sustained benefits. This is because most ILC-type work can be described as a ‘slow burn’. Based on our own long experience with the types of initiatives that are funded by ILC, and as is true for community development generally, it takes time to build momentum. People do not just show up on the first day of an initiative. It takes time to grow awareness of the opportunity; it takes time for people to decide to get involved; it takes time for a methodology to be established, tested, and evolved; it takes time for participants in ILC-type initiatives to unlearn the low expectations and biases of their past; it takes time to build belief in what might be possible, and so on. Because of this, by the time the initiative has built real momentum, the funding is coming to an end. The project finishes and the momentum is lost. Or, as has already happened in the ILC program, there is a period of uncertainty before an initiative’s funding is extended, during which time project staff leave for work elsewhere because they need certainty themselves. Again, momentum is lost. Therefore, while ILC-type initiatives should be accountable for the work they undertake and how it impacts, it should be within a longer funding timeframe where momentum can be properly consolidated, so the NDIS gets the sorely needed mission-related benefits ILC was intended to deliver.

Third, ILC-type initiatives need to be commissioned in ways that do not inadvertently exclude good agencies who lack the skills to write winning grant applications. This has already happened in the history of the ILC program, where small local agencies with good capacity or potential to deliver ILC-type benefits have been unsuccessful in accessing funds because their skill set did not include writing a competitive grant application. This method of commissioning needs to be reworked if the Scheme is to maximise benefits from the skills of local agencies.

Fourth, ILC commissioning, with an assumed larger share of the NDIS resource pool, needs to be built around a more strategically coherent and public-facing strategy. This strategy should recognise the critical importance of ILC-type work, the role of a range of community agencies in delivering it, and the need for a commissioning framework that ensures a synergistic approach to awarding grants to provide good coverage and reduce the risk of duplication or gaps. The strategy should be anchored on Scheme values, Scheme outcomes, and the other points outlined in this paper.

Notably, the Productivity Commission’s 2017 report on NDIS costs cautioned governments about a “false economy” of investing “too few resources for ILC” during the transition period^[7] and the same principle continues to apply. Without broader structures and supports in place through ILC-type initiatives, particularly as the states and territories have withdrawn from funding a range of services and programs, more people are pushed toward seeking individualised supports through an NDIS plan, which can adversely affect Scheme costs and sustainability. Research from Swinburne University has also raised concerns about the limited investment in ILC and the need for longer-term ongoing funding to overcome the problems of stop-start short-term projects including the undermining of trust among participants and loss of key personnel from projects due to funding uncertainty.^[8] This research also highlights the need to reconsider the current approach to commissioning, develop a clearer strategy and targets, provide greater long-term coordination, and increase knowledge sharing to facilitate the scaling of successful projects.

Unlocking high-quality decision making

As a final thought in this paper, there is another way to think about the importance of ILC-type initiatives. The Scheme’s success is anchored on the decisions people make. This includes the decisions Scheme participants make about how and what to spend their budgets on, the decisions people living with disability and their families make about connecting to community resources and opportunities, and the decisions non-disabled people make about their own endeavours to ensure access, welcome, and inclusion.

Therefore, the ILC program can be viewed as a mechanism to fund work that assists people in ways that help their future decision-making. Using our Model of Citizenhood Support as a framework, the ILC program can be understood, and its impact measured, by considering how it strengthens future decision-making in one of four ways, that we term the ‘Four Capitals’:

• Personal Capital: The decision is owned
  It belongs to the person, and is not made for them by someone else, and is anchored on a positive, hopeful vision of a good life.
• Knowledge Capital: The decision is informed
  The person explores a range of options and comes to a view about which option holds the best prospect of a good outcome.
• Material Capital: The decision is resourced
  The person is able to access resources to assist with decision-making, and resources to enact the decision.
• Social Capital: The decision is supported
  The person has trusted people in their life they can test their thinking with, and who are there as emotional and practical support as the person enacts their decision.

Effective ILC-type initiatives typically have an impact in one or more of the above ways. For example, peer networks and similar initiatives support people to build belief about what is possible and to understand the potency of their own personal agency in achieving change. This is true for people living with disability and for non-disabled people in community gatekeeping roles. For further example, such networks are valuable conduits for people to access and discuss information about options and their impact, be it a network of parents exploring the merits of inclusive education compared to special education, or a group of industry employers contemplating how to make their recruitment processes more accessible. For still another example, peer networks and other communities-of-interest or communities-of-practice provide essential social and practical supports as people enact their decisions. We have seen this in networks of families exploring alternatives to group houses for their adult sons and daughters living with disability. Similarly, we have seen this in networks of employers and educators as they try out new methods that can lead to greater accessibility and inclusion.

Conclusion

The ILC program is an important investment in how people make decisions and take actions, and those decisions and actions are essential to people’s life chances and, therefore, to the Scheme’s prospects of success. For the reasons outlined in this short paper, the ILC program must have a more substantial profile financially and strategically in the overall Scheme arrangements, if the NDIS is to deliver on its promise. It cannot be an afterthought; it cannot be an optional extra. It is as essential to the Scheme as individual plans and budgets, and ought to be afforded the same status.

Declaration of interest: JFA Purple Orange is a recipient of ILC funding.

In the next Paper in our NDIS Review Conversation Series, we will consider the challenges in using ‘reasonable and necessary’ as the criteria to determine if a support can be funded in an individual NDIS plan.

► Join the conversation at our To The POint webinar

Tell us what you think about the current approach to ILC funding, share your ideas for reform, and help raise expectations about what the NDIS Review can deliver at our ninth To The POint webinar on Monday, 19 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 of JFA Purple Orange, discussing this Paper. Attendees will have the opportunity to ask questions and provide their feedback on the ILC program and other aspects of ‘Tier 2’.

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.10: The elephant in the room: addressing the issue of ‘reasonable and necessary’ on Monday, 26 June 2023, or visit our website to find out more about our NDIS Review Conversation Series. 

► 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 of JFA Purple Orange, about it, please contact Marissa on (08) 8373 3833 or email marissab@juliafarr.org.au.

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