The Goal is Citizenship Not the NDIS
As the National Disability Insurance Scheme (NDIS) begins its roll-out beyond the initial trial sites, this article explores what support providers should be considering about their role to ensure that change actually delivers better outcomes for those who will access support through the NDIS.
Australian health and community services are currently undergoing one of the biggest and most significant changes in their history, with the development of the NDIS. Promising ‘the insurance that gives us all peace of mind’ (National Disability Insurance Scheme N.D.), the scheme aims to increase the social and economic independence of people with a disability and enable full participation in community life.
The NDIS is built on a movement that was led by people and families arguing for better and fairer access to services, including greater control over resources. The movement was consistent with international campaigns for more choice, control and autonomy to assist people to be active citizens in their local communities, as supported by the United Nations Convention on the Rights of Persons with Disabilities.
Alongside this, slightly different in its fabric but fundamentally similar in its principles, we have also seen the development of recovery. Essentially this demands that people with experience of mental illness themselves need to be the co-creators of their support strategies and in control of their lives now and into the future. We know that recovery is maximised when people and families are in control, have real choice in accessing the right supports and can tailor this support in a way that makes sense to their lives and connects them to their communities.
The NDIS is a mechanism. At its simplest it offers a process of individual planning and resource allocation, which assists people to understand their budget and secure their support locally. Simple and, when kept simple, beautiful.
However, if we are genuinely supporting people to live meaningful lives, able to contribute economically and as an active citizen in their local community, I have learnt it takes more than an individual plan and an individual resource allocation. I believe that the success of the NDIS not only sits in the hands of people and families, but also in the creativity of service providers.
Are we simple suppliers?
The NDIS is built on principles of market economics: demand will drive supply. The National Disability Insurance Agency (NDIA), the independent statutory agency whose role is to implement the NDIS, has taken the role of the regulator and market shaper – facilitating and regulating the costs of the ‘products’ in local communities.
The ‘products’ are driven by an essential component of the NDIS, the NDIA Price Guide. This is a catalogue of human service strategies or service interventions considered to be useful.
This catalogue offers the scheme a simple mechanism to identify the cost of each strategy that individuals may require to achieve their outcomes. This is not in itself bad; it can be seen as a transparent pricing mechanism or a transparent resource allocation process.
However, the catalogue offers line items that are not necessarily contemporary or individually tailored items. By its very nature, it can only ever offer a standard product that needs to be further developed in partnership with people and families.
For example, a person seeking support to explore friendships and support for household budgeting may be offered ‘visiting support’ in the catalogue – however for this to really work well for the individual, this needs to be individually tailored.
With this mindset we are in danger of replicating a fundamental error that we saw in the United Kingdom in the early days of personalisation – the process, outlined in the UK Government’s 2007 paper ‘Putting People First’, by which people with long-term illnesses or conditions received support that was tailored to their individual needs and wishes. After the first three to four years of offering individual ‘personalised’ budgets, people and families began to report the benefit of having an individual allocation. However, they also began to share their disappointment about what was available to buy, with service providers continuing to provide the same things that hadn’t worked for people for many years (Crosby and Fulton, 2007).
For example, many UK participants were being placed in hostel or group living supports, despite these model’s previously not working in their experience. However, this was the prevalent model of support to purchase in the early days of self-directed support.
My experience of working alongside people and families over the last 20 years has clarified one fundamental principle; people and families do not want simple standard supply. They want individually tailored, co-designed supports that make sense for them in their own context, in their own communities and in ways that build their own capacity and connection.
Many tell me they want their supports with a partner of their choice, in a relationship that is respectful, and in the hope that this partnership will evolve flexibly over time. This way of thinking is not new – however in our new context we are in danger of losing sight of the lessons that people and families have taught us over many years.
Many service providers are simply supplying line items: ‘what’s on the plan is what we deliver’.
The NDIA recognises the need for flexibility and has created line item flexibility in its catalogues, but this will not in itself change the reality for people and families. Poor system design can significantly impact on the real outcomes for people and families and we need to be mindful of how we counteract this to create good solutions.
Providers are central to this change. Providers must remember that people and families are not looking for simple suppliers. They are looking for partners who will work with them to co-design their supports and then deliver this design flexibly and in a way that evolves over time.
This will take creativity and the development of relationships between people and providers; respecting the person as not only the customer with the money, but the designer and leader in how this partnership needs to look.
Our business is supporting Citizenship
Under the NDIS, as elsewhere, we are living with the very real tension of balancing consumerism and social justice. Although this tension is not unfamiliar, the power of consumerism is ever increasing.
Balancing our business requirements with our foundational purpose is an art we need to develop quickly in our leadership and in our workforce. As the NDIS rolls out across Australia, the temptation to get swept away in the mechanics of the scheme and its development is immense and potentially a great distraction from the real work. Have we already bought into the notion that we are simple suppliers who deliver line items? Or are we Community Development organisations whose aim is to support local citizens in their local communities.
I believe with all of its benefits and flaws the NDIS can be a catalyst for service providers to support the active and full citizenship of people. Acknowledging the resources people have via the NDIS is the starting point to then design supports in partnership with people and families that assist people to:
Find their sense of purpose
Have the freedom and support to pursue it
Have enough money to be free
Have a home where they belong
Get help from others they choose
Make a life in the community
Find love and relationships that matter.
The elements of Citizenship, as described above by Simon Duffy (Keys to Citizenship, 2006), help us to understand what a full and meaningful life may look like. This cannot possibly be delivered by the NDIS alone.
Avivo in Western Australia is an organisation that is working hard to challenge the concept of ‘supply’ having developed an approach of flexible management. This has the explicit aim of developing capacity in the individual and their family to direct and manage their supports in partnership with the organisation. This approach is about assisting the person to take on the level of responsibility that is right for them today, whilst learning to become an employer and decision maker in the future.
Flexible management offers at least three options to people who choose to work in partnership with Avivo. People can choose to manage their supports themselves, using Avivo as an advisor in the recruitment process and ongoing problem solving. People can choose either for Avivo to manage their supports on their behalf, or for shared management of supports. This approach works to invest in people as the Director of their supports.
In supporting organisations that have freed themselves from the Provider paradigm and work towards a Community Development context, here are some fundamental business structures that impact on good quality support in our current context.
Promoting an understanding of Citizenship across the organisation – Potential partners should be assisted to understand their role, to move from paternalism to partnership. There needs to be an understanding that who use their services, not those who work in the system, are the experts of their own lives. Through working in partnership with people and families, we can offer some expertise in navigating the system and exploring solutions.
Co-design, co-production or simply working together – For all levels of the service provider, people and families are the best advisors who provide access to a wealth of knowledge about what the future supports need to look like and what is likely to make a difference. This will be the future demand.
Facilitating and supporting peer support – The beliefs of connecting citizens to each other who are facing similar situations are well documented. Any service provider focussed on supporting Citizenship must work in a way that promotes peer to peer connection.
Accountability – Whilst partnership is the foundation of our future practice, we are now workling in a context where service providers re accountable to the person. This includes ensuring what was agreed upfront is what actually happens. This is the fundamental basis for people to really direct their own recovery. Accountability offers so much strength to people and families, knowing that if this partnership is not working in the way they had hoped, there is plenty of opportunity to go elsewhere.
Creativity – The need for organisations to be creative is so important. For many people, a lifetime of traditional supports is evidence that more of the same will have minimal positive results. Creative solutions require the confidence to postpone certainty and the need to really understand the person and what they see as important. This in itself takes a different level of courage and integrity in how we work alongside people.
We are in the early days of understanding the NDIS and its implications, but we are not alone in this experience. There is much to learn from our international allies in what works and what doesn’t. Experience has taught us that if we don’t keep our eye on the fundamental aim, then we continue to do what we have always done around the system changes.
Doing the same thing in a new context is guaranteed failure with minimal positive change for people and families. Community services have an opportunity to respond to the new context as allies and partners of people whose lives literally depend upon it. Community services will play a vital role going forward – the challenge is here and now.
Part of this article was published for VicServe, Australia in 2016.