Why We Need to Use the F-word

Quality, Safeguarding and a good life

In an article published earlier this year, my colleague Jess Quilty pointed to the concept of an ordinary life as an important reference point when considering quality and safeguarding (Q&S). This is not new. Concepts like ‘a good life’, ‘normalisation’ and ‘an ordinary life’ have been around for decades and are frequently embedded in conversations about best practice in disability services. They underpin the very ambitions of the NDIS, yet curiously the ordinary life is not part of the mainstream Q&S dialogue. When these concepts are applied to Q&S, we begin by asking questions like: What contributes to you (or most people) being safe and staying safe? And what is it that adds quality to your life and mine? A key part of the answer to both questions is the missing f-word: friends.

Su Hsien Lee from WA’s Individualised Services summarises the role of friends nicely when she says: having people around us, who know us well, who love us and look out for us is when we feel safer and actually are safer. For me, most of those people are friends with whom I have reciprocal relationships - the love, sharing and caring flows in both directions. If I get unwell, or am facing a dilemma in my life, they are the people who support me and vice versa.

Note: At the end of this article, we provide a few practical tips about how providers can put the f-word at the centre of everything you do.

The NDIS, Quality, Safeguarding and the f-word

At its inception, the NDIS recognised that its approach to Q&S, like the Scheme itself, needed to uphold and promote people’s human rights. The Quality and Safeguarding Framework (QSF) states that it is intended to uphold and respect the rights of people with disability. This includes the right to dignity and respect; to live free from abuse, neglect, violence and exploitation; and to participation and full inclusion in the community. As such, the Framework includes measures to build the capability of people with disability to take control of their supports, as well as measures to prevent abuse and neglect and respond to any issues that emerge.

The QSF  explicitly outlines developmental components, recognising that natural supports (aka friends and family) are fundamental to Q&S. This has been a consistent thread ever since a key 2013 paper described that the need for a Safeguarding Framework that enables citizens to be safe, well and included. The Framework is person centred and starts from the premise of building citizens’ capital through developmental investments. The approach is fundamentally steeped in the notion of citizens having an active role in safeguarding themselves (p.1). The paper analyses how the level of ‘capital’ that any person has across four types of capital (personal, knowledge, material and social) affects their level of vulnerability and risk, and how best to respond to this in rights-based and empowering ways. It’s a terrific paper that should serve as a touchstone that keeps both the Commission and providers on track. Disappointingly, it is no longer available on either the NDIS or Commission websites.

Virtually anyone who wants to have a good life and relies on professional services or paid supports is likely to agree that friends have a vital role to play in safeguarding them and maintaining their quality of life. A strong network of friends who complement family in our lives is especially important when we may be dependent on professional service systems. For example, most hospitals these days implicitly rely on many patients having family or friends visiting them and providing very practical support in addition to the obvious social support. In my own family’s recent hospital experiences, this included ‘quality aspects’ as basic as alerting staff to and assisting with personal care tasks that urgently needed attending to.

The NDIA continued to recognise the important role of friends by stating it is … critical to strengthen formal and informal support networks, such as family, friends and community in its 2015 QSF sector consultation Factsheet. However, this fundamental developmental safeguard is largely absent from the NDIS Commission’s Q&S work to date. A search of the Commission’s website using the word ‘friend’ highlights just how absent they are at this point. The unfortunate knock-on effect is that the role of friends is similarly overlooked in most service provider Q&S work. This needs to be addressed early to reduce the risk that this absence becomes a more systemic problem.

The Commission’s work is clearly built around the QSF’s three key domains: developmental, preventative and corrective that respectively target individuals, workers and service providers across each domain (QSF p.15). Measures in the developmental domain are intended to strengthen the capability of people with disability, the workforce and providers. While these are not regulatory functions, they are included in the Framework because they are fundamental to supporting quality and safeguarding…Investment in the developmental and preventative domains is intended to prevent adverse outcomes, so requiring less corrective action (QSF p.13-14). In this respect it reflects key elements of the NDIA’s early Q&S work. Yet despite its importance we are constantly surprised by the number of attendees at our Q&S workshops who are unaware of these domains and have not read the QSF.

The Commission’s work to date has focused less on the developmental domain and more on things like the rollout of new standards, auditing, and transition. More recently it has also provided information for participants about complaints processes. All of this is important and we acknowledge that the Commission is engaged in a broad scope of complex work, necessary to build a comprehensive practice framework that effectively guides providers’ decisions and actions.

Let’s start using the f-word

But – and there is a but – if we don’t start using the word ‘friends’ and building Q&S strategies around the role of friends fairly soon, we run the risk of reinventing an old broken system, biased toward preventative and corrective compliance measures. We have a once in a lifetime opportunity to shape an effective Q&S system which requires a real balance of developmental, preventative and corrective measures. The current approach is also likely to focus more on workforce and provider strategies than strategies that target individuals. This will be a lost opportunity and may prove to be inefficient and costly in the long term. Recent history, including people’s experiences that precipitated Royal Commissions into both the disability and aged care service sectors, demonstrate that compliance-driven approaches to Q&S are inadequate for many people whose high support needs frequently place them in vulnerable situations. Whilst, encouraging that the role of friends (as ‘natural supports’) is embedded within the the QSF, we watch in anticipation to see if the Commission will, in the short term, provide guidance to providers about how it anticipates this strategy will be developed.

So, what can providers do?

1. Whether the Commission provides leadership on this issue or not, there are things that providers can do. The first step is to read the QSF and familiarise yourself with the three domains. Acknowledging central importance of unpaid friends in any systematic and systemic approach to quality and safeguarding will follow from this fairly logically.

2. Begin using the word ‘friends’ unless alternatives such as ‘natural supports’ and ‘community supports’ meaningfully refer to something more than friends. It is friends who add quality and safeguarding to our lives. And if we use ‘a good life’ or ‘an ordinary life’ as a reference point, it’s pretty clear that most of us don’t usually refer to our friends as natural or community supports. These are service-land terms. Using them when we really mean ‘friends’ doesn’t assist providers to develop approaches that systematically and successfully support people to build and maintain friendships and relationships.

3. Consider your own organisation’s support worker position descriptions or position outcome statements for a moment. Do they include any overt expectations that workers will support people to have socially valued roles? Or build and maintain friendships, including with people who don’t have a disability?

4. Review the recent history of training provided to your support workers: are they equipped for the often difficult work of facilitating a person to create and maintain friendships? Explicitly using the f-word has the power to immediately change the focus of what support workers actually do on a day to day basis. This is not a semantic change. It is important, and could even be revolutionary according to the late Tom Nerney.

5. Most critically, develop and embed practices and ways of working that focus on friendship building. This is likely to require many providers to engage in some robust and honest introspection. For some, this may lead them to undertake some deep culture work. Why? Because your organisation’s existing values, culture, policies, skillsets and practices may not be compatible with this new approach. For example, if your support worker position descriptions do not include an expectation that support workers will facilitate a person to build, maintain and strengthen friendships with people who don’t have a disability, you probably won’t even know if people with the skills to do that are working for you. And you almost certainly aren’t going to be specifically recruiting people who have those skills. These changes are more like gene therapy than cosmetic touch-ups.

 We will continue to discuss the cultural implications and explore other practical strategies and steps that providers can take in our Q&S newsletters. Why? Because this stuff is really important, and we have a chance to actually get it right. In the meantime, please take the time to ask the people around you, what contributes to you (or most people) being safe and staying safe? And what is it that adds quality to your life and mine?

Image: Bobby Kyriakopoulos, Transport Service, 2017, gouache and pencil on paper, 56 x 76 cm, courtesy of the artist and Arts Project Australia