Respite has become a kind of ceaseless issue in the NDIS, with what the Scheme should and should not cover, and to what extent, being a source of constant thinking and rethinking. But a recent report by Carers Australia argues that language and terminology is one of the key factors that determine whether or not respite-like supports are included in a Participant’s Plan.
The word ‘respite’ has definitely gone out of fashion. People reject the implied assumption that people with disability are something that you need to take a break from. The Independent Advisory Council (IAC) has taken this view, arguing that the word is insulting and hurtful to people with disability. The NDIA acted on the IAC’s advice, removing the term from its lexicon.
However, while the word might now be considered passé, the actual concept of respite is still alive in the NDIS. The Price Guide makes reference to “Short Term Accommodation and Assistance.” This support is typically designed to achieve the same outcomes as “respite” – to help sustain the informal supports in their life and to support the person’s independence.
So if respite-like supports are available in the NDIS, what is the problem? Well, carers are still using the word respite. And you can hardly blame them. Pre-NDIS this was the go-to term. It is also still used in aged care and the Department of Social Services. There was no memo sent out to all carers about the change in terminology. And if a memo was sent out, they probably would not have had the time to read it.
According to the Carers Australia report, carers and Participants who ask for ‘respite’ in their Planning meeting are often being told that ‘respite’ is not available in the NDIS. Whereas carers and Participants who know to ask for ‘short term accommodation and assistance’ and relate the request to the Participant’s goals (rather than the carer’s), are able to receive respite-like supports. Therefore, outcomes directly relate to the ability of the Participant and carer to ‘speak NDIS.’
The IAC are right that the word ‘respite’ is very far from ideal. It promotes the incorrect, but unfortunately prevalent, notion that people with disability are a burden on their loved ones. But we need to make sure that we are using language in a way that promotes understanding. So if the Agency continues to reject the term ‘respite’ then, as Carers Australia argue, they must instruct Planners not to deny Participants this support based on terminology alone. Planners can instead play an education role, helping the carer and Participant to understand what respite-like supports look like in the NDIS and why the word is no longer in use.
However, there may also be a deeper problem at play. We have to consider why Planners are choosing to refuse families a support because they are using the wrong words. This seems unbelievably petty. Yet since it is unlikely that they are just malicious, it raises legitimate questions about the sort of pressure some Planners might be under to keep Plans as low as possible. This would match the price saving, blowout fearing mentality that seems to be gripping the Agency.
Whatever the reason, it is clear that the current situation is unacceptable. Planning meeting should not be a test that Participants have to pass. Viewing them as so contributes to a cycle of disadvantage, whereby Participants and carers with less time or ability to learn the correct terminology are unfairly deprived of the supports they are entitled to.