In the words of Martin Luther King Jnr, “Our lives begin to end the day we fall silent about things that matter.” This is a mantra I have always lived by, so there are things I must say about the implementation of the NDIS before it’s fully live. But before I share my thoughts from the last six years, I think it is important for me to explain why I feel somewhat qualified to comment.

I began working in disability services in 1987 and one of my greatest frustrations has always been that there was never a ‘real driver’ to ensure continuous improvement and quality service provision in the sector. This was largely because of the ‘block funded’ model, meaning people with a disability and their families having little or no choice and control over the services they received.

So, when the idea of an individualised funding system became a real possibility, I was more than happy to help progress that idea to ensure quality service becomes the norm (rather than the exception). The idea of an individualised funding system became a reality on July 1, 2013, and I have lived and worked in the Barwon NDIS Launch site. I want to make it categorically clear that the NDIS, as an idea, is still fundamentally sound and right, but we need to ensure that it is done well. And so, with the context set, I begin my musings. I am not saying they are right or wrong; they are just my experiences, opinions and perspectives.

In March 2010, I became the local level campaign coordinator for the Every Australian Counts (EAC) campaign and I continued in this role until June 30 2013. For three years I worked with an amazing team of seven campaign champions (six of whom were people with a disability or family members of people with a disability). The Barwon EAC team became affectionately known as the “Geelong Cell” and the “epicenter” of the campaign in the broader campaign arena.

One of the key things I have learnt is that if you are given a road map and you detour too far away from the routes given, you can get bogged or lost and it can take you a very long time to get back to where you wanted to be. In my humble opinion, we need to get the NDIS back on course. The Productivity Commission gave us a road map that we all need to revisit and start to follow before we get so lost that full scheme roll out follows some routes that do not take us to where we dreamed we were heading.

The NDIS was supposed to be fully federally funded and nationally consistent.

Sadly, this was the first major detour from the road map and it continues to plague the scheme today. The bi-lateral agreements negotiated in each state gave us vastly different launch sites in each state, so we cannot do much comparative evaluation. In Victoria, the lack of discernment about what state funding was thrown into the NDIS bucket is also of grave concern because those people with a disability who are not eligible for NDIS individualised funding have lost many critical supports. Swinging the pendulum too far towards individualised funding has the potential to fail many people. We must get the balance right, particularly for those who will never be eligible for individualised funding.

The NDIS was supposed to be a safety net and social insurance scheme and the Productivity Commission urged it not to become litigious.

From my experience, we have lost the word “social” from the notion of “social insurance”, and the NDIS is fast becoming based on more private type insurance models. Many things are being debated as to whether they “save a short-term dollar”. I believe the NDIA is hesitating to fund supports for people that are leading to both internal and external reviews of decisions, which cost the Scheme more. In too many cases, I am witnessing debates that are occurring with planners who are often ignoring the very recommendations put to them by the “specialists” or the lived experience and expertise of the person with a disability and their family. We need to revert this thinking.

The NDIS was supposed to recognise people with a disability and their families as experts in their own lives.

In my experience we are wasting valuable scheme dollars (and therefore taxpayers’ money) on paying approximately $175.00 per hour to have a “specialist assessments” done to tell us what a person needs. In many cases, the person with a disability or their family has already stated was they need only to be told they must have a “specialist assessment” to come to the same conclusion. Again, I am not being naive and I wholeheartedly support “specialist” input if it’s required but when it is so blatantly obvious and when it costs more than what is actually required by the person, then why are we wasting valuable resources?

In my opinion, the agency is becoming too interventionist in people’s lives and we need to reverse this trend. A recent example of this is the way “Request for Service” is sometimes occurring. This is coming straight from the agency to a service provider, not from the customer. Where is the choice and control in that? This was never meant to be a “big brother” model and all the messages we are giving to people with a disability and their families about the “system knowing best” are so wrong and in breach of the fundamental principles of the scheme.

If the NDIS is going to realise its potential, we need to get back to a much more rights based focus and also get our skates on about the Tier 2 work proposed by the Productivity Commission (now known as Information Linkages Capacity Building). The longer we continue implementing the NDIS in the absence of these other critical pieces of work, the more likely the NDIS will never achieve what it was intended to. Customer demand and Innovation needs to drive the market, but unless the NDIA is going to become less interventionist and less prescriptive in its implementation then we will sadly see much of the previous system, just rebranded.

The NDIS was supposed to be more of a one-stop shop model.

Now that the NDIA has started carving people up in to pieces and saying “those bits belong to health”, for example, we are sending people back to running around the mazes of different systems to find supports. This is the old world that we were trying to move away from. The old system was a described by the Productivity Commission as a “confusopoly” and we appear to be creating new “confusopolies” by leaving people stranded between systems. The circular process people in Victoria have to go through to get access to much needed aids and equipment is so time consuming and wasteful of our precious funding resources. How anyone that designed this system can think this circular process is efficient and effective is beyond me. It is simply leaving people without necessary aids and equipment for way too long.

Language guides culture and information is fundamental to empowerment.

To have started the NDIS world using language that the intended customers had no understanding of has been completely disempowering. I have spent the last three years in Barwon launch and beyond interpreting and translating this new world for people with a disability and their families and empowering them to take action if their plan is not right from their perspective. The NDIA would do well to learn from this and run focus groups with participants and families to understand the language of the people and start to use the language of the people rather than creating a disengaging and disempowering environment. The language spoken by the bureaucrats is not reflective of the real world.

The NDIA’s move to trying to be completely on-line

I will say that the NDIA needs to understand that many participants and families are not of the online world. Believe it or not some do not even have an email address or a computer, tablet or other device and to expect people to be operating their NDIS interaction and supports in an online world is totally unacceptable.

The end… for now!

Whilst I could go further with my musings and learnings, I think I will leave it here for now as my key thoughts have been tabled. Please do not leave your reading of this article with a misunderstanding that I do not support the NDIS. I am 110% committed to the NDIS becoming the best possible scheme it can be (and have spent the last 6 years of my life trying to ensure this outcome). We all helped create the NDIS, we now all have a social responsibility to shape it in to the best scheme it can be so if you think anything I have said has some merit then share away :)

Jacqui Pierce

GAICD, NDIS and Human (Disability) Services consultant/trainer

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