Respite By Any Other Name
Over the past 12 months EBL has been committed to supporting people
to transition through the National Disability Insurance Scheme (NDIS)
planning process as they move from DHS grant funding to individualised
NDIS funding. We have focused on supporting people to better understand
the new NDIS funding streams. In particular, we have put our efforts into
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
who works for Disability Consulting Services in the area of NDIS Policy & incorrect, but unfortunately prevalent, notion that people with disability are
Analysis articulates why this work has been critical. 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
Respite has become a kind of ceaseless issue in the NDIS, with what the Planners not to deny Participants this support based on terminology alone.
Scheme should and should not cover, and to what extent, being a source Planners can instead play an education role, helping the carer and Participant
of constant thinking and rethinking. But a recent report by Carers Australia to understand what respite-like supports look like in the NDIS and why the
argues that language and terminology is one of the key factors that determine word is no longer in use.
whether or not respite-like supports are included in a Participant’s Plan.
However, there may also be a deeper problem at play. We have to consider
The word ‘respite’ has definitely gone out of fashion. People reject the implied why Planners are choosing to refuse families a support because they are using
assumption that people with disability are something that you need to take the wrong words. This seems unbelievably petty. Whatever the reason, it is
a break from. The Independent Advisory Council (IAC) has taken this view, clear that the current situation is unacceptable. Planning meeting should not
arguing that the word is insulting and hurtful to people with disability. be a test that Participants have to pass. Viewing them as so contributes to a
The NDIA acted on the IAC’s advice, removing the term from its lexicon. cycle of disadvantage, whereby Participants and carers with less time or ability
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.
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.
14 EBL QUARTERLY NEWSLETTER
for ‘respite’ in their Planning meeting are often being told that ‘respite’ is not
understanding the new NDIS language. The article below from Sarah Gingold
Respite By Any Other Name
“
According to the Carers Australia report, carers and Participants who ask
”
to learn the correct terminology are unfairly deprived of the supports they are
entitled to.
Article by Sara Gingold, NDIS Policy & Analysis
http://www.carersaustralia.com.au/storage/carers-australia-positon-paper-
“
ndis-reasonable-and-necessary-supports-the-case-for-respite-1.pdf
We have to consider why Planners are
choosing to refuse families a support because
they are using the wrong words. This seems
unbelievably petty.
”
EBL QUARTERLY NEWSLETTER 15