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IAC in focus: the Intellectual Disability Reference Group

This is the third article in our 'IAC in focus' series of articles which covers the very important work of the NDIS Independent Advisory Council (IAC). The IAC is an independent group of disability experts that give the NDIS advice from the perspectives of people with disability, family and carers and service providers.


What is the Intellectual Disability Reference Group?

In 2015, the IAC started the Intellectual Disability Reference Group (IDRG). The IDRG was needed because around 70% of NDIS Participants have some kind of intellectual disability. Rhonda Galbally, Chair of the NDIA IAC, and NDIA Board member is also the Co-chair of the IDRG. The other Co-chair is NDIA Service Delivery General Manager Liz Cairns.

The Intellectual Disability Reference Group was created to make sure that the voices of people with intellectual disability are heard more clearly by the NDIS on a wide range of topics. This should help people with intellectual disability to be more included and have better experiences with the NDIS.

NSW Council for Intellectual Disability chairperson Michael Sullivan, a man with an intellectual disability, says the IDRG is “for people to have a voice within the NDIS”.

It is important that the NDIS learns lots from the different members of the IDRG, who are people with intellectual disability, parents and carers, as well as providers of support. The IAC will keep on listening to the IDRG so it can be more informed and so people with intellectual disability are included in all parts of the NDIS.


See the Intellectual Disability Reference Group in action, in this new 3 minute video from the NDIS. It has captions and a transcript.

Show transcript



In 2015 the Intellectual Disability Reference Group was formed to advise the NDIS Independent Advisory Council on how to improve the NDIS for people with intellectual disability.

The group includes people with intellectual disability, academics, advocates, providers and carers.


It’s for people to have a voice within the NDIS.


It’s never really been done before. We’ve kind of been just lumped with everybody else with a disability so our specific needs and lived experience has never been looked at. So it is quite groundbreaking.


Well, intellectual disability is a large group. You know, if you count it in one way it’s 70 per cent. Therefore, to have a special group of experts, which includes people with intellectual disabilities who are leaders — as well as leaders from all around Australia — seemed a very good idea.


It’s a fascinating group to look at. It’s the first group that we’ve formed as an Agency. It’s been a very conscious and deliberate attempt to make sure that every voice around the table is heard and heard equally.


The NDIS have just got to understand that people with ID, it might take them longer to understand.


The thing is that there’s not much information going out so people are really confused about what’s happening with the NDIS.


That’s very important on-the-ground advice to us.


Choice and control, which is what the NDIS is all about, it just doesn’t happen as a matter of course for people with intellectual disability. So it’s really important to have a group focusing particularly on their needs.


What are you going to do with those very few clients who have the same sort of ID as me, so they’re so close to the borderline it’s not funny, but they do fall into the NDIS?


The group has raised a lot of very important issues and one of the ones we’ve been discussing today, for example, is the topic of support for decision making. And so what does this mean? How is it going to be that it’s not just someone telling someone what to do but genuinely helping the person with an intellectual disability think about what they want, think about their life?


So that we can not only make decisions but live valued lives in community.


We’ve had a lot of really good discussion, we’ve produced a number of papers. The aim of them is to provide the agency with information and recommendations about how it can address those issues.


They’ve engaged really well with the agency so that we’ve got good alignment between the things that we’re having to think about very deeply for scheme design and rolling out the scheme from the 1st of July. What I’ve also seen is a really nice interaction between members of the group.


And what do you hope the group will achieve?


Great and better outcomes of the NDIS. And when I say ‘great’, I mean wow, fantastic pieces of work.