So close, yet so far – getting to the real potential of the NDIS!

The National Disability Insurance Scheme (NDIS) is about people, it is driven by our national response to building a fair and equitable society.

It is about people impacted by disability getting a fair go and the assistance they need to reach their personal potential.

It is only then, as a society will we reach our full potential. Its underpinned by commendable principles that are sound. For example individual funding and choice and control which are based on the premise that as citizens if we direct and define the support we need we will be more likely to receive relevant and effective support. We become the experts in our needs, these are not defined by professionals or providers. The NDIS is based on concepts of ‘reasonable and necessary; as a way to ensure the scheme remains affordable and equitable. Building a national scheme based on these principles has been the task of government and we now have the NDIA implementing the NDIS.

While the aspirations are sound and the intention solid, for many reasons, building a ‘person-centred’ scheme, where people feel fully empowered and in control has arguably not been achieved. Nevertheless we do see many people benefiting from the scheme and experiencing more choice and control in their support, and importantly moving toward long held aspirations. The NDIA and Government have been demonstrating a growing  responsiveness to feedback about the flaws of scheme. Some days it feels like what could be a relatively simple scheme, fairly allocating resources to individuals and empowering them to purchase and build their ideal support, has been made awkward, clunky, administratively top heavy. This is likely due to people who designed the scheme having their perspective influenced by existing ways governments work, and being distanced from the day to day lives of ordinary people for whom the scheme was designed. These designers are likely good people, with good intentions yet limited exposure to innovation and new ways of creating.

A whole new discourse had been created around the NDIS ‘core, capacity building and capital’ to describe the practical daily support people may need to get on with their life. Sadly this new language has distanced ordinary people from easily understanding the scheme that was designed to empower them. Improvements have been made, yet NDIS plans still don’t feel personal or empowering. There are many nuances that have distanced the ordinary person from being authentic owners of their support. These are the disappointments in the scheme and limit it reaching its aspirations. Hopefully overtime these matters will improve. In the meantime the major focus is on rolling the scheme out to as many Australians as practical is holding off any major shifts in administration.

As a niche provider focusing on working alongside people with psycho-social disability (this is another new term in our discourse generally unfamiliar to ordinary people), we have embraced the underpinning principles of the scheme and focused on each person who finds there way to us, seeking support with their priorities and life. We talk to people about their aspirations and try to unpack for them how they can use their support to meet their priorities. We focus less on the line by line items and unfamiliar language as allocated in their plan and more on what they feel is helpful in their day to day lives. Importantly we acknowledge that this will be learning for both of us and getting the right support may take trying different things, and working at a pace that makes sense to the person, rather than overwhelming them with everything stated in the plan at once. We are open about the challenges we face and the strategies we use to minimise these.

We notice for many people the plan itself seems like a strange construct, it does have goals that people have defined but it has not got to the heart of a person’s identity and situation. It has been developed at a point in time, often with a planner (sometimes through predefined planning tool) but not likely to capture the real breadth of support that might be helpful or the deeper goals that a person may want to express. For these reasons, we see the plan as a superficial guide and are much more interested in getting to know a person and talk with them overtime about aspirations, challenges and the practical things that can make a big difference. We are much more interested in the principles of providing people with choice and control and inspiring them to look at possibilities and meaning in day to day life. The NDIS has transformed many people’s lives for the better, however at the same time it could be so much more, it has created many barriers that if addressed would make a richer experience much closer to the aspirations of the underpinning principles.

As an organisation we try to keep the administrative challenges away from the people (participants) and their support staff and carry this tension internally. It is a very clunky scheme to administer. After over 20 years’ experience in individualised funding schemes, the NDIS feels like it is over-complicated and inefficient. The layers of line items and strange terminology that have taken on a life of their own like daily living, support coordination, and support connection, all need to be claimed separately by hour of support provided. Essentially the same people may be supporting a person doing the same things like assisting someone to keep on top of their bills and budgeting, getting shopping and cooking done and/or participating in a local art class or walking group. Each of these things may be claimed from different line items from the pricing framework yet essentially they are the same support. Again this adds a layer of unnecessary complexity and distances people from what should be a simple process of directing the support they require and choose.

Building a persons capacity

The work we do in supporting people is always done in the spirit of building a persons capacity to be able to get more confidence and skill in managing these things themselves. Yet the NDIS has a category called ‘capacity building’, the nature of support is always about capacity building and working in ways that engage people in their support and create spaces for people to grow, learn and develop. The same worker may support a person doing similar things, yet on one day it may need to be claimed from capacity building and another day core support. These are unnecessary complications. This is another example of the frustrations of the NDIS as it stands. We believe it does not need to be so complex and administratively heavy, these constructs of the current categorization means people are further distanced from what could be simple allocation of support (including hours) to a person at a reasonable price so they can use it to negotiate the most meaningful type of support they need.

As an organisation who has grown to work with over 150 people (participants) on any one day we need to track and claim not only hours of support, but to which line item these supports should be allocated. We some times feel like someone somewhere has said ‘lets design the most complicated system with hundreds of categories, that the average person will never understand and make people have to claim and understand every single hour against every single line item. Lets tell people they have flexibility but they are unlikely to understand all the items, so will be more likely to feel constrained than free to choose. Lets not develop any technology that makes it easy to track each hour of support against each line item, somewhere some consultants and new businesses will make a small fortune creating this and organisations who want to spend their time delivering services and building quality services will be distracted by trying to create systems that can make the NDIS work.’ Of course we acknowledge in good faith, with good intention the scheme was designed by people attempting to capture all the aspirations and principles of the scheme. Unfortunately on many levels they may have missed the mark. We are confident the scheme was built by well meaning people who aspired for it to reach the potential yearned for by Australians with disability and their families. We are sure they did their best with the tools they had at the time. Nevertheless we remain hopeful that overtime someone somewhere finds a way to untangle the complexity, realign practice with the principles and allow the NDIS processes to get out of the way and let the scheme optimize its aspirations and become more closely aligned with the empowering principles it aspires.

In the meantime we will keep listening to people who are seeking support, helping them to see the potential in the scheme, and focus on getting it right one person at a time.

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