NDIS Review Conversation Series: Paper No.4

Raising the bar for authentic community participation

Key points

Goals for NDIS’ investment in social and community participation:

Active valued roles in community life
Meaningful community membership, connections, and belonging
Utilising existing community resources
Achieving a rich mix of formal and freely given informal supports

Making these goals happen:

NDIA stops funding duplicated and segregated activities and services
Plan elements are designed to lift a participant into valued community membership
NDIA measures the quality of community participation supports, not merely the number of hours a person is present in community spaces

“Few can appreciate the impact of exclusion and profound isolation on the identity and self-esteem of people with disabilities. Always defined as ‘different’, always defined by lack… When identity is always framed by others and always framed in a negative way, it is difficult to develop and maintain a strong positive sense of self and difficult to establish and maintain relationships characterised by equality and mutual support.”

The landmark ‘Shut Out’ report released in 2009 tells a shocking story of the experiences of people living with disability facing exclusion, discrimination, and systemic disadvantage in every aspect of their lives, as captured in the above quote. Indeed, social exclusion and barriers to community participation sat alongside disability services as the most frequently raised issues in submissions to the consultation about the experiences of Australians living with disability and their families. The subsequent 2011 Productivity Commission report on disability care and support repeatedly refers to the ‘Shut Out’ report and it is often cited as a key impetus for demands to find a better way to support people living with disability in our communities. The National Disability Insurance Scheme (NDIS) promised to help bring an end to the all-too-common experience of being ‘shut out’.

Therefore, a significant expectation of the NDIS is that it will deliver ‘social and economic participation’ for participants; in other words, lift people living with disability into meaningful valued roles in mainstream community life. At JFA Purple Orange we refer to this as active valued membership of community life, and we consider this key for any of us to live a rich and fulfilling life. Likewise, a community becomes richer from the participation and contribution of all its members, bringing a diversity of experiences, knowledge, and voices. Hence, it is essential the NDIS enables authentic community participation and connection for participants on an equal basis, and in the same spaces, as everyone else. The NDIS cannot continue funding community activities that at best can be described as ‘community tourism’, or funding outdated services such as separate segregated group activities dictated by providers or support workers. This is because these types of services work against authentic community connection and, in their effects, deliver the opposite of what the NDIS is tasked with delivering.

In this fourth paper in our NDIS Review Conversation Series, we focus on the need to raise expectations about the nature of authentic community participation and connection, and the types of supports the NDIS should fund to deliver these outcomes. We also identify a number of challenges including eliminating ‘community tourism’ based approaches, leveraging existing community resources to avoid costly duplication of activities, and ensuring that the NDIS participant pathway works to facilitate the identification of goals and supports for authentic community connection. Further, we highlight the importance of measuring the quality of outcomes of funded supports rather than narrow quantitative data about hours paid for without understanding the nature of what is being described as ‘social and community participation’.

Valued roles in community life

Much of what identifies us, and that we find fulfilling, happens in community life. Catching up with friends over a coffee, going to the beach, joining a club, volunteering with a local group, working, accessing education or training, exercising, shopping, and many other activities all bring us into contact with our communities. In all these examples, we are taking up active roles that bring us into mutually valued connection and relationship with other people. At JFA Purple Orange, we use the collective term ‘Citizenhood’ for these meaningful valued roles. They are key to a sense of wellbeing; our community is where we build our connections and our sense of belonging. This helps explain why Covid-19 pandemic lockdowns impacted us so hard – we lost this connectivity.

The Productivity Commission’s 2011 report emphasises the importance of community participation, connections, and social relationships as a key policy objective for governments and of a new national disability scheme. Among the benefits the Commission identifies are improving wellbeing and life satisfaction outcomes, enabling greater independence, lowering the long-term costs of care and support, reducing the likelihood of accidents and injuries, generating ‘social capital’ across society, supporting children and young people to develop and flourish, promoting diversity in all its forms, reducing individual circumstances of disadvantage, and boosting economic activity.

Meaningful community membership, not ‘community tourism’

If, as the antidote to the ‘Shut Out’ story, the NDIS is to deliver social and economic participation, this has to happen in a way that ensures NDIS participants take up meaningful valued roles in community life. As such, the key challenge for the NDIS is to look at how people are supported to connect to their community, not just the amount of time they are present in community spaces. Often, disability services, whether in a group or one-to-one, bring people into community in ways that do not foster genuine connections with other people. For example, a support worker might take a person to a café, where the person is ‘parked’ at the corner table while the worker transacts all the business with staff. Or a provider might load several people into a car or minibus and take them to a community venue like a zoo, bowling alley, or similar. These are examples of ‘community tourism’, where the person is in the community but not supported to engage in it on the same basis as other people. The person is a spectator, a visitor passing through, in ways that reinforce community perceptions that people living with disability are served in separate ‘special’ ways.

This ‘community tourism’ directly works against the NDIS goal of social and economic participation. If we think of NDIS plan budgets as an investment, these types of services are like investing your money in a venture you know has no prospects of success.

Avoiding duplicating community resources

A second problem of these services for people living with disability is that they can sometimes duplicate opportunities already present in community life, for example setting up a special art class, choir, community garden, or similar, for people living with disability when the local community already has these. When disability services create these duplicate services, not only is it a poor use of resources but it also serves to render genuine inclusion further out of reach. This is because, in their effects, these separate ‘special’ disability-focused services and programs reinforce a community perception that people living with disability are best served by having separate ‘special’ stuff. This has been termed ‘othering’. It kills true social, community, and economic participation and should have no place in NDIS decision-making.

Unfortunately, it does. For example, an NDIS participant told us they were prevented from using part of their funding to attend a local art class because it was not a ‘disability-related expense’. Instead, they were told one-to-one art therapy could be funded as an alternative. Not only is this an expensive alternative to a low-cost community resource that the participant was keen to access, but the therapist-led alternative cannot set the scene for authentic community connection and membership in the same way a local art class can.

Ordinary neighbourhood resources and opportunities available to all local people are a natural gateway to community membership. They bring meaningful valued roles readily available in our communities, often at low or no cost. Assisting a person to connect to these resources and opportunities can lead to a snowballing of connections and relationships for a person over time. The stories below illustrate this.

JARROD’S* STORY:

Jarrod lives in a regional town and has little connection with his neighbours. As a person with high physical support needs who uses a powered wheelchair, he wonders how he might build relationships in his local community. Jarrod realises that many of his neighbours are not home during the day while he usually is. He lets his neighbours know that he can be available to receive parcel deliveries during the day so they can avoid the nuisance of following up delivery notification slips at the post office, which also has limited opening hours during the day. Jarrod’s neighbours take up his generous offer and over time he begins to get to know each of them. These connections evolve into genuine relationship and Jarrod is drawn into other gatherings and opportunities as a valued member of his local neighbourhood.

ETHAN’S* STORY:

Ethan lives with intellectual disability and is a keen member of his local Scouts group. But with his 18th birthday fast approaching, Ethan will soon be too old to continue attending Scouts, and he will lose this valued role that brings him membership in his community. He wants to continue. The Scout leaders recognise Ethan’s enthusiasm, and his gift of being able to capture the attention of the younger Scouts and ensure they follow directions. They invite him to become a Scout leader and shape the role to best suit his strengths. Ethan thrives in his new role and becomes a valued and integral part of the leadership team for his local Scouts group.

*Names changed

Measuring the quality of outcomes

Currently, it seems the main way that the National Disability Insurance Agency (NDIA) seeks to understand the impact of its investment in ‘social and community participation’ is by measuring the number of hours each week a person spends in community. However, this broad measure will inevitably include data relating to community duplicates, segregated activities, and ‘community tourism’, where Scheme participants are in community but are not of community. This means the NDIS is not only funding the wrong thing, but also measuring the wrong thing.

The data measurement is including activities where participants are simply service recipients whose presence is passive and/or grouped together. Similarly, NDIS surveys of participants ask narrow questions like ‘Has the NDIS helped you to access services, programs, and activities in the community?’ or ‘Has the NDIS helped you be more involved?’ These do not adequately consider the nature of the activities the NDIS has invested in. Consequently, the data is creating a false impression of the Scheme’s impact on ‘social and community participation’ because quality is largely overlooked.

While measuring authentic valued community participation and membership is undoubtedly more difficult, we think it is better to measure the right thing poorly than the wrong thing well. While no measure will perfectly capture the impact of ‘social and community participation’, a range of qualitative methodologies could be deployed at relatively low cost to build a more accurate picture of the impact of funded supports.

Advancing authentic community connection through a mix of formal and informal supports

If the NDIS’ goal for ‘social participation’ is that more people living with disability are taking up their rightful place as active valued members of mainstream community life, then this is best achieved through a mix of formal and informal supports. Put simply, formal supports are what you buy, while informal supports are given freely through personal networks and community membership.

Formal supports, involving workers paid or otherwise, need to be very carefully constructed because they can inadvertently serve as a barrier to community connection, not just because the support worker can become the main transactor of the connections with community, but also because their presence serves to reinforce the idea people living with disability have ‘special’ arrangements, including a paid person who is always there.

This means support workers need to focus on some key things to ensure their day-to-day practice is person-centred and focused on creating genuine impact rather than simply filling time. First, they need to craft their work in a way that puts the person front and centre. Second, the work must have, as its primary focus, how the person is supported to build connections and relationships in community life. As such, a key goal of formal supports is to create the circumstances where informal connections are made and relationships built. It is through these connections that new, freely given, informal supports emerge. For example, any one of us might join a new community event, like a community garden, get to know other people there, and as a result start gaining mutual benefits, such as assisting each other through car-pooling, or grabbing a coffee afterwards, in the way acquaintances and friends do.

In turn, this means service providers need to shape their workforce so the centre-of-gravity is not about skills in running activities, but, instead, is about the art and craft of facilitating opportunities for authentic connection, with the diplomacy and advocacy that this work requires. Arguably, this is the most compelling measure of NDIS success in relation to community participation; the presence of new people in the person’s life who choose to be there as friends and acquaintances, and who bring supports in the way friends and acquaintances do.

Social participation is in some ways an unhelpful phrase, because it makes it sound transactional and somewhat superficial, when really it is about authentic relationships and belonging; that is, the opposite of loneliness.

Investing to create transformational change

Currently, many individual NDIS plans seem not to include elements designed to lift a person into authentic community participation and membership. This must change, driven by the participant’s own priorities for the things they would like to do that can nurture and sustain valued membership in community. This includes exploring who in the person’s life might be approached to assist this. The person’s chosen support, for example an LAC, can then assist the person to identify how to advance those connections and translate the priorities into any elements their NDIS plan might best be applied to. In this way, the person’s NDIS plan expenditure is driven by the outcome of valued community membership, is highly personalised, and avoids duplication. This brings a much stronger return on investment.

And, as mentioned earlier, the NDIA should stop funding formal supports that duplicate existing community resources, or which reinforce ‘othering’ through segregation and ‘special’ activities. Instead, when signing off on a participant’s individual plan, it should look for elements that hold the prospect of bringing the person into genuine community membership and belonging through support agencies that have an auditable record of achieving this.

Conclusion

The NDIA needs to reorientate its approach to ‘social and community participation’ and no longer fund services that duplicate community resources, or which result in ‘community tourism’ or ‘othering’. Instead, it should invest in supports that facilitate genuine opportunities for authentic community connection, relationships, and belonging. This should be based on the priorities the person and their allies set and be a rich blend of freely given and formal supports. The measurement of outcomes must align with this purpose, reflecting that the quality of participation is critical to transformational change. Every Australian has a role to play as a neighbour, acquaintance, and fellow community member. Each of us is an informal supporter, and a mutual beneficiary, to the people we know. Part of the NDIS’ job is to judiciously use its funds to help unlock this.

In the next Paper in our NDIS Review Conversation Series, we will focus on home and living options that reflect genuine individual choice and enable Australians living with disability to live ordinary lives in their neighbourhoods, communities, and our nation.

► Join the conversation at our To The POint webinar

Tell us what you think about community participation in the NDIS, share your ideas for reform, and help raise expectations about what the NDIS Review can deliver at our fourth To The POint webinar on Tuesday, 11 April 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 social and community participation in the NDIS.

Register to join the To The POint webinar here.

Join the conversation on Facebook: www.facebook.com/groups/tothepointpurpleorange/

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► 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.5: Imagining more in NDIS home and living options on Monday, 17 April 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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