Is a critical ingredient to the success of the National Disability Insurance Scheme being neglected? Laura Davy and Ariella Meltzer argue that under current policy settings, the answer is yes.
The National Disability Insurance Scheme (NDIS) was founded on the principles of autonomy and self-determination described in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Through personalised planning and an individualised package of supports, the NDIS aims to enhance the choice and control available to people with disability and broaden their opportunities to participate in social, economic and community life.
But a growing body of evidence shows that relational context – that is, the presence of good interpersonal relationships and social networks in people’s lives – has a huge impact on their overall wellbeing and the extent to which they can access the benefits of social policy.
Positive relationships with people like family members, friends, support staff and advocates can be a determining factor towards people’s ability to exercise choice and control (William and Porter, 2017), negotiate the service and funding system (Mitchell, 2015), and participate in community life (Hammel et al., 2008). In contrast, people with disability who do not have access to supportive interpersonal relationships may not fare as well within these service and funding arrangements, particularly if they have high and/or complex needs (Collings et al., 2016).
This body of evidence indicates that effective policy implementation requires strong recognition of the importance of relationships to achieve policy outcomes – even in a system focused on individual choice and control. In other words, relationships matter, particularly for the success of a scheme like the NDIS.
The NDIS represents an important opportunity to support the relational context of scheme participants. It could make a real difference by supporting, strengthening and building the relationships that are so central to everyone’s ability to live a good life. But to what extent has this opportunity been harnessed? To what extent are relationships foregrounded in NDIS policy and operational documents, and the importance of relationships to participant outcomes recognised?
What did we do in the research?
To answer these questions, we conducted a content analysis of NDIS policy and operational documents. We looked at four key documents that outline the scheme’s foundational principles or specify operational details about what is and is not funded, and for what reasons:
- National Disability Insurance Scheme Act 2013
- National Disability Insurance Scheme (Supports for Participants) Rules 2013
- Operational Guidelines of the National Disability Insurance Agency
- NDIS Price Guide 2017-18 (Victoria, New South Wales, Queensland, Tasmania)
We then looked for key words such as ‘relationships’, ‘family’, ‘carers’ and ‘informal support’, and how they were framed and used in these documents.
What did the research show about the place of relationships in the NDIS?
Improving social and community participation is a key part of the rationale for the NDIS and, in this respect, the scheme recognises the importance of healthy relationship networks to people’s lives.
It also stresses that formal services and supports provided through the scheme will be complemented by the help and assistance offered through “informal supports” – that is, “the supports [NDIS] participants get from the people around them, for example family, friends, neighbours”. This reference to family, friends and neighbours as a necessary complement to formal services demonstrates that the NDIS in fact relies on the quality of participants’ relationships to keep costs at a contained level.
But despite how important relationships are to the scheme’s success, they do not have a central place in NDIS policy.
Relationships are viewed mainly as a source of practical support and care to complement and reduce the cost of formal services formally provided through the scheme. They are not described as a form of connectedness that brings the sort of love, companionship, identity and practical and emotional support which we all hope to enjoy in our lives.
There are two exceptions. In the Operational Guidelines, the broader relational value of ‘informal support’ is acknowledged briefly:
“The informal support provided by parents, siblings and other family members is vitally important to people with disabilities. In addition to the support provided, the close relationships that participants have with the people who provide this informal support can also be highly important” (Section 11).
The NDIS Act also notes that, for children, there should be effort to “strengthen, preserve and promote positive relationships” between a child and their family (Section 5.f.iii).
However, while these references include some recognition of the role of family, carers, friends and other significant people in the lives of people with disability, this recognition does not come with any funding or resources to actively support the relationships that NDIS participants have with those around them. These references also depict relationships as unidirectional: people with disability are described as recipients of informal support from family and friends rather than active participants in their relationships.
Finally, the relational appropriateness of the support provided by family, carers and friends is barely mentioned at all. Relationally appropriate support is support that corresponds with the kinds of help and assistance that would usually occur within a similar type of relationship for other people in the community. It means, for example, making sure that the support between an adult with disability and their parent or a person with disability and their brother or sister corresponds with the general norms of parent-child and sibling relationships, rather than exceeds the levels of support and care that are seen as socially acceptable if neither person has a disability.
These are crucial omissions. They mean that the support that people with disability may need or benefit from to participate in reciprocal, positive and fulfilling relationships risks being overlooked in the individualised planning and funding process.
Three ways the approach to relationships in the NDIS can improved
Firstly, relationships need to be conceptualised as relationships, not merely as sources of informal support. Relationships play all sorts of roles in our lives that cannot be reduced to the concept of ‘informal support’.
Secondly, the in-principle commitment to “recognising” and “respecting” relationships in NDIS policy needs to be accompanied by a commitment to actively support relationships, through funding and practical resources.
And finally, consideration of the relational appropriateness of supports needs to be incorporated into the planning process. Otherwise, the scheme risks condoning support arrangements that would be considered inappropriate for any other relationship, and may be damaging to both parties.
There are opportunities to revise the NDIS Price Guide, for example by adding new line items that enable people with disability to choose supports that will improve the quality and functioning of their relationships. There are opportunities to focus more on relationship building in outreach processes, for example to people living in closed settings. There is also plenty of scope within the planning process to facilitate dialogue about relationships and what is needed to support them. This could involve training for Support Planners and LACs, to help them prompt these
conversations and negotiations, and providing tools or resources to help people with disability and their family and friends to engage in these dialogues. It may also require exploring sensitive practices to use with groups with complex relational circumstances, particularly for NDIS participants who require support from family and friends (who have their own needs) to articulate their needs and preferences in the planning process.
Most importantly, supporting participants’ relational wellbeing requires moving beyond narrow conceptualisations of people with disability’s relationships as primarily sources of ‘informal support’ to recognise the other valuable and varied roles they play. An approach to policy that recognises and supports positive and fulfilling relations between people with disability and their family, friends and significant others in their lives is important both for the individual wellbeing of participants, but also for the success of the scheme overall.
Our full research finding can be accessed in Opportunities to enhance relational wellbeing through the National Disability Insurance Scheme: Implications from research on relationships and a content analysis of NDIS documentation . Full findings can be obtained by contacting either of the report’s authors.