The NDIS and Animal Farm

I was around 15 years old when I first read George Orwell’s classic novel Animal Farm. The story of animals who, disgruntled with the way things are, take over the farm but things don’t necessarily work out as their vision of equality had been initially discussed. At the time, I always thought George Orwell was predicting the rise and fall of communism. It was more about dictatorships than communism with Orwell commenting on how they just end up being like their predecessor. Today, as I help lead a team of wonderful staff navigate the imperfect system of the NDIS I wonder whether George Orwell’s novel has application to the mire that we currently have to contend with.

“We are all equal”

The NDIS is predicated on having one system for all issues relating to disability. This is the first problem. I am not sure that there has been a time in history where a politician or bureaucracy has created one approach and that approach has worked for all of whom it has intended. After hundreds of years of mistakes on this front have we not learned that one approach does not cater for all issues?

“We are all equal but some more equal than others”

The same model and the same funding model is used for the NDIS, run behind the scenes by a group of actuaries. From what I understand it is the same basic model. How can this work? I am part of a group of organisations that advocated for an approach that proposed a true early intervention approach for children with hearing loss, focusing on the therapies they receive. It proposed higher funding in their life with it tampering off as they reach school age. It reflects the models we use in service delivery that achieve outstanding results (and return on investment as shown by Deloitte). Our calculations showed our proposal would provide the best possible support for children and provide an overall cost saving to the NDIA. What was the response? “No”. It would create a precedence that the NDIA was concerned about.

The truth is that not all approaches should be the same. There are models that do work. The NDIS needs to be nimble to reflect this.

By stating this, I am not advocating for different or special deals. I am advocating for a system approach, where we tailor things to provide the true outcomes for people is put as the cornerstone of the NDIS, not funding models.

In Animal Farm, the beginning of the end came when the animals deviated from their initial premise and, some would say, natural tendencies came through. I wonder whether the NDIA is concerned about this happening. I would argue that for many in our community the initial premise announced by the then Federal Government hasn’t even started to be delivered.

“Choice and Control”

Choice and control is a brilliant concept. It puts the decision making power in the hands of the people most affected and should be encouraged. But the truth is that there is little control and little choice with the NDIS at this time. People are told what they can and cannot have, when they can and cannot meet with planners, how long their plan can be for, who they can involve in their discussions with the NDIA, what is reasonable for their circumstance. It is in control of the NDIA. There are no longer “overs and unders” to reflect the changing needs for individuals and good luck in trying to up your package within the first 12 months if something changes or was wrong!

People within the NDIA who have limited knowledge about what the family is trying to contend with or the disability the child/person may be needing support with. And how could they? The staff at the NDIA need to be across so much, how could they be equipped? 

The NDIS has sort to create markets for people. The market-isation of the sector creates issues in a number of instances, some more pronounced than others. How do we build capacity effectively? How do we empower people? And what about people in very remote towns? Or remote Aboriginal communities? Or reflect the need to create relationships with communities to earn their trust? How does the NDIS produce outcomes for all Australians who need it?

Should We Close The Farm?

The farm in Animal Farm did not close. It ended with the animals from the outside looking inside and seeing the pigs looking like man and the man looking like the pigs, not being able to tell each other apart. The NDIS should not be closed either, despite the calls I have heard from some quarters.

As the bureaucracy in Geelong (and around the country) continues to grow and the problems with the NDIS continue to surface there might be some positive steps to start to ensure we don’t repeat mistakes made in the past and help deliver what the NDIS was intended. Some of these have been mooted already but here are some simple thoughts:

1.      Create certainty for people - Focus on more than 1 year. Plans and funding should reflect the needs of the family/recipient and be based on what the experts say. The concept of up to 5 year plans has been proposed and that is a good step forward.

2.      Make pathways easier – Markets aren’t the solution to everything. Easy access to services, supports, and funding is more important that markets. Make sure the NDIA integrates with other systems and it is easy, not hard for people.

3.      Fund early intervention approaches properly – different funding will produce better outcomes and save money long term.

4.      Create a nimble NDIA – Bureaucracies don’t work for consumers and they certainly don’t do care. The NDIA meet people where they are and how they need. Remember, no one ever thought they would be in a position they would need to ask for money, nor do they want to talk about deficits. 

5.      Ensure the approach (and people) are “people centric” – the NDIA should not be gatekeepers, they should be enablers. Create flexibility. Support people. Use some empathy.

6.      State Governments stay involved – the NDIS is only one part of the system. States can’t abdicate from the disability sector. Ensure a suite of options are available, contextualised and ensure the system works.

In such a prosperous country like Australia we should all be equal. However, that doesn’t mean that we have only one system, a system that has been designed with the same flaws as the one that comes before it. We need to be better than that and learn from the past. We have a unique position in our country’s history to show the world how it can be done well, for the sake of those who need it most.