The NDIS is designed around the philosophy that people with disabilities and those closest to them, are best placed to make decisions about what they need. For all the challenges and flaws in implementing the NDIS, this philosophy remains central to the scheme and is the main reason the NDIS continues to be widely supported in principle.
Engaging with the NDIS requires identifying one’s goals across a range of areas, which the NDIA then uses to prepare a plan for which things they will provide funding for. Once given that plan, a participant has to decide if the supports are appropriate, whether to seek a review by the NDIA, and potentially then arrange providers for all those supports. There are many decisions in this process. What are my goals? What do I want to achieve, what do I need to help me achieve those goals? What evidence of my needs must I provide to support my application?
Often these decisions are made with the assistance of people close to those with disability, who know them well and have some understanding of what they want. But there are also people with little or no access to that kind of support, and who might have difficulty working through that process.
The guardianship system is intended to provide support for people needing to make decisions who may have limited ability to make them, or who need support. This is usually limited to a specific decision, not a lifetime assumption of decision making on their behalf, and while the guardianship system is in place and functioning, it was never anticipated to deal with both the number of decisions that the NDIS is generating (applying to join the scheme, setting goals, plan reviews, circumstance changes etc) nor the recurring nature of decisions, since the NDIS can re-do the plan annually.
Guardianship itself is undergoing changes in philosophy. A recent report highlighted that guardianship and appointment of trustees can have problems, and that legislation is not keeping up with current thinking about human rights. In summary, guardianship laws have meant substituting a guardian’s decision for the client’s, and ostensibly making a decision in the ‘best interests’ of the client. States are moving to a philosophy of supported decision making, where the decision the person with disability would make for themselves is, to the maximum extent possible, uncovered and realised. This requires a deep understanding of the person’s background, wishes, environment and preferences and is not a trivial process.
There is a body of work around supported decision making and progress is being made in advancing legislation in many states, and Leadership Plus is currently conducting a pilot Decision Support Program to assist people with challenges in making decisions and who do not have a next of kin or other suitable person to assist them. This allows people with disability who are in this situation to get assistance in making the many decisions required during the process of engaging with the NDIS.
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