You say Risk, I say Freedom

I have had the opportunity to access a wide variety of services during my life. The quality that differentiates the best from the rest is the provider’s ability to empower me to make my own choices and not assume that they should take on that responsibility.

In the pre-Covid era, I was at a concert in Brisbane. I usually attend these things by myself, as not many in their mid-30s like Broadway show tunes. Just as the show was about to begin, a woman came up to me and said, ‘I’m a support worker. Are you with anyone? I don’t think you should be alone’. It was only 18 months ago. I wondered whether that woman would go up to anyone else in their 30s and tell them that they should not be alone.

I was not offended by the woman’s concern because incidents like this occur semi-regularly. However, I felt deep sadness. ‘Imagine having that woman as a support worker’ was my first thought – the type of support worker who does not promote independence and always thinks of worst-case scenarios first.

In several DSC workshops, we constantly stress the concept known as dignity of risk. That is the balance between keeping people safe while still providing people with disabilities with the opportunity to take risks. When I talk about the dignity of risk, I put it another way. I call it freedom!

It’s not the job of the service provider or its employees to question the choices of its clients. Most perceive ‘freedom’ as the ability to choose from an entire range of options. It can be. However, true freedom comes from picking the wrong option, learning from that mistake, and then hopefully picking the right one. If that second choice is again incorrect, then the chances are that ‘freedom’ will become even more valuable based on the lessons taken from the experience. There is a reason for the cliché ‘To err is human’.

I would much rather a service provider kept me safe in the way I frame safety. Therefore, we should meet to discuss how the organisation can safely support me and my goals. Suppose a service provider feels that these choices are inappropriate or do not fit its values. In that case, it is better to agree that we are not suited to one another and move on.

I want an organisation that understands that I can attend a concert by myself, so I would scoot away as fast as I could from whatever organisation employed that lady I encountered. But, on reflection, I realised that others might like and need that extra support that I did not need. Therefore, the definition of ‘quality service’ will differ from person to person to fit their preferences and needs. Yet, quality and safeguards exist to set standards for all the Scheme’s stakeholders.

Traditionally, public policy development and implementation are framed in clinical terms designed to identify a specific problem and a clear-cut solution that will cover all possible eventualities. To have bureaucrats setting standards to help meet individual preferences seems inappropriate because the changing preferences and evolution of an individual over time cannot be measured. Public policy theorists call such contradictions ‘wicked policy problems’. This paradox has always been at the heart of disability policymaking, and it remains a challenge.

Such wicked problems are why the purpose of meeting quality and safety standards is often misinterpreted. Quality and safety standards are developed using traditional methods of public policy development through establishing uniform guidelines during static moments in time to prevent or identify specific problems. However, as with public policies, standards do not consider the nuances or changing preferences of the individual required to develop ‘quality disability service provision’.

Achieving a high standard of excellence as a provider is not about advice from the Commission telling stakeholders what to do. It is about balancing the rewards and risks of freedom. If erring is human, providers must be willing to allow participants to err. Concurrently, participants must accept responsibility for the consequences of their mistakes. Increased choice and control always come at a cost.

I often encounter participants who see all the rewards and none of the risks because they are not used to the choice and control that the Scheme facilitates. We have spent our entire lives fighting for it. In these circumstances, it is only natural that providers see increased choice through the prism of contingency planning, just like the woman I encountered.

When anyone has access to newfound choice and control, it is only natural that they want to push the envelope to find out how far these limits stretch. For example, in my first stages of planning to live independently, I did not just want to change cities; I wanted to move interstate, where I had no support networks whatsoever. If that plan had come to fruition, a potential service provider would have had to facilitate that so that I could exercise my choice and control without question, even though it would have been a colossal mistake. If I had chosen that option, the service provider’s emergency response plan would have had to be extraordinarily complex.

There is a reason, however, why quality and safeguards are paired together. ‘Quality service’ can only be achieved through freedom of choice and having safeguards in place should the choices turn out to be the wrong ones. The balance between meeting preferences and reducing risk is difficult to maintain. That balance, after all, is how you know that the NDIS is working as intended. Quality and safeguards are the ultimate expressions of choice and control.