In search of clarity on the new supports outside the NDIS

Hannah Aubin 0:00

So we were always supposed to have foundational supports. They're always meant to be part of the NDIS system, but it's really important that we get them. It's important for the long term sustainability of the NDIS, and it's important for the access of people with disability to the services that they need.

Martin Davies 0:17

Chances are you won't have heard of foundational supports or know much about them, it seems none of us do, yet they're the big change on the horizon for the five and a half million Australians living with a disability. By contrast, the NDIS is well known, much talked about, but not supposed to be the only assistance in town, and it supports just 10% of people living with disability in from pillar to post, we're searching for more about these new supports that the government promises to start later this year. 

I'm Martin Davis, sitting in for Noah Seccomb. We'll hear from people living with disability and what they know of these changes, what media serving those with disability has discovered and hear from the author of a paper with recommendations on how they should work. But let's first talk with a father whose son has grown up with NDIS support.

Bernardo Viscaino 1:11

I'm Bernardo Viscaino. I'm a father of two very active boys. I've been raising them by myself and my son, Lucas, was two and a half when he was diagnosed autism. We got that early diagnosis, so that which prompted, you know, what is usually known as early intervention, starting therapies early on.

Martin Davies 1:35

In terms of the NDIS, you've been able to secure a budget, and you've managed that. For Lucas, is it imaginable for you to see life without that?

Bernardo Viscaino 1:47

Well, yeah, because when we received a diagnosis, the NDIS did not exist. And I remember talking to this doctor who gave us the diagnosis, and at the end of the meeting, he handed me this piece of paper, and on that piece of paper, he had scribbled down all sorts of supports and ideas and thoughts and therapies. So before the NDIS, that's what I got a piece of paper, I believe that there was some funding available at the state level. There were certain organisations to talk to, certain community groups, certain resources in terms of area of education. Looking back now with the introduction of the NDIS, you know, more formal approach.

Martin Davies 2:24

So, what are your feelings about what's missing? Because, as you said, you've witnessed what it was like prior to the NDIS, and now we've got foundational supports coming along. What do you think that they could or should be offering?

Bernardo Viscaino 2:39

One big element for me is that the inequity or the certain families that really need support not always get, you know, the sufficient, the sufficient support that they need. And whereas other families or other individuals on the NDIS, they might just get, you know, be able to navigate it better.

Martin Davies 2:59

But from what I gather the foundational supports are designed to, certainly to come in and support in areas where the NDIS doesn't, and part of that is about the kind of the wider the community support that maybe has not been so well catered for since the NDIS was set up in a way to deal with individuals, rather than a collective community response.

Bernardo Viscaino 3:26

When the NDIS was introduced, it became sort of this, this catch all phrase. So if any support was required or needed by someone, everybody would just point you, Oh, you know, the NDIS will fund that. Or, you know, check with the NDIS. Think of any individual with a disability and that goes to a mainstream school. Well, what sort of supports are there for individuals that are not on the NDIS that's outside of our umbrella? It's going to be a challenge in terms of rebuilding what was perhaps lost when the India NDIS came online.

Martin Davies 4:00

Generally in Australia, there has been a decline in volunteering. There has been disconnecting in some regards. Do you think that... is this going to be a huge shock when, if it is given, in fact, to the community sector and the voluntary sector to supply. .. some of the foundational support?

Bernardo Viscaino 4:18

There might be a clash, because when the NDIS was introduced, many non-profits morphed into service providers, and they've had to change their business model from being volunteer led to being funded by NDIS and charging, invoicing, essentially clients. No one can expect everything to be done by the NDIS. In fact, that's been probably a way for many of these government agencies and services to deflect towards the nds. And so I think that the fact that foundation supports are coming online stops that excuse. It tells the rest of the government to engage with the disability community to support people with disability.

Martin Davies 5:00

Let's move now from a concerned father, and as we do on From Pillar to Post, explore what's being said to community media from the sector's specialists.

Vanessa Smith 5:09

My name is Vanessa Smith, and I am Powerd Media's Program Coordinator. Powered Media is a media platform created by and for people with a disability, driven by our commitment to amplify the voices and stories of the disability community. I live with multiple disabled and chronic illnesses, and my job covers a lot of the day-to-day back-end work of keeping Powerd running.

Martin Davies 5:30

and Vanessa, you have put out a call on social media to really just try and understand more about these foundational supports. What sort of response have you had?

Vanessa Smith 5:41

We had some really thoughtful answers from our community on social media, which has been fantastic. We asked, What do you know about foundational supports? Jodie Humphries gave us a reply, which I think is pretty representative of where a lot of people are at. And she said, "I have no idea what foundational supports are or how they're used, but I'm all for more support if it's done well, which often doesn't happen when the government dig in." 

We also had a reply from Charlie Park, who said, "I don't know if most people realise this, but many community based disability supports disappeared ten years ago when the NDIS came like you can no longer go to your local council and receive help with cleaning on meals. If you are disabled, it's either the big, massive, awful behemoth of the NDIS or no support beyond your family, if you have a family."

Martin Davies 6:29

And I think that was a concern that was also voiced by Bernardo Viscaino, who we've just heard from now, Vanessa. There is a podcast run by Powerd Media called Access Granted - and again, you you had a an instance with that. Tell us about that, when one of your guests was asked about foundational support.

Vanessa Smith 6:49

Yeah, so Emma Myers hosts Access Granted, and I've been helping her produce season 2. And recently, we were having an interview with Lisa Prowd, and we asked Lisa what they thought about foundational supports.

Emma Myers 7:03

... Foundational support?

Lisa Prowd 7:06

No, I have no idea. So now I'm going to go and research.

Emma Myers 7:10

Well, we've actually done the hard work for you. And if you go to Powerd Media...

Vanessa Smith  7:16

... and when you hear the episode, you'll hear me laugh a little bit, and Emma calls it out.

Emma Myers 7:21

And I love the fact that Vanessa laughing at me now...

Vanessa Smith 7:27

and I'm not laughing at Emma. I'm not laughing at Lisa at all...

Leisa Dowd 7:31

... bought a car. A car is essential in Australia.

Vanessa Smith 7:35

It's just that what Lisa has said is really representative of what's going on right now, that the government hasn't communicated this.

Martin Davies 7:44

And from the the media aspect of it to the advocates - what are the advocates doing in terms of pushing for this and pushing for... that sort of clarity about what the supports are about and who will run them?

Vanessa Smith 8:00

So there was a bunch of submissions done last year from patient organisations and charities to the federal government, from People With a Disability Australia, who sometimes people might know about PWDA, their acronym...they're a national disability rights and advocacy organisation. PWDA bring up a critical approach. In their summary into this report they submitted to the government. PWDA's submission contains a large number of excellent recommendations to the government, and I wanted to highlight a selection of them. 

Genuine co-design is crucial... Further clarity is needed on foundational supports... Accessibility of services and supports must include recognition of marginalized and disadvantaged cohorts...There's a need for national consistency - which is a risk that I haven't seen raised in many places, that if foundational supports are going to be state-based, that's a huge risk for inconsistency. 

And I think this can all be summed up by saying there's still an opportunity for foundational supports to be an amazing service for Australians with a disability, but we desperately need clarity on what those services will be and that those services will be person-centred. We don't want to end up in a situation where we're told our needs are wrong when it's the service on offer that is wrong.

Martin Davies 9:17

Vanessa, thank you so much, and just remind people where they can find more information from Powered Media.

Vanessa Smith 9:22

You can find powered media online at www dot Powerd dot media - and Powerd is spelled P, O, W, E, R, D.

Martin Davies 9:33

So we've learnt that foundational supports are for the nine out of ten people who don't get NDIS funding. Disability Service Consulting, DSC, that supports organisations to work with the NDIS, is hosting a conference in Melbourne right now. It's described as part of the route to foundational supports. So I reached out to the person we heard at the beginning of this podcast who's presenting there.

Hannah Aubin 9:57

My name is Hannah Aubin, and I'm an associate in the disability program at Grattan Institute - and I'll be on the panel Lamps, Ladders and Lifeboats this week at the DSC conference in Melbourne. When the Productivity Commission set up and designed the NDIS back in 2011, they established three tiers of support. Because ultimately, NDIS - we use it like a word, but it means the National Disability Insurance Scheme - and there are three levels of insurance coverage. 

The first is coverage for all Australians, should we acquire a disability before the age of 65. The second tier is Foundational Supports. It's those disability-specific supports for people with disability who don't need really intensive supports, but need something a little bit more than mainstream services. And then tier three is the very tippy-top, and that's really intensive supports, and that's what the NDIS is. So we were always supposed to have foundational supports. They're always meant to be part of the NDIS system, but it's really important that we get them. It's important for the long term sustainability of the NDIS, and it's important for the access of people with disability to the services that they need.

Martin Davies 11:09

And if I can ask you, why do you think they've been the slowest to come to fruition?

Hannah Aubin 11:14

Great question - and one that vexes policy makers and people who love the design of the NDIS, like I said at Grattan Institute. Probably it's because the NDIS is such a significant change to the social policy system of Australia and the disability services system of Australia that getting that up and running has been a big challenge, and it's basically taken all the focus and funding so far to get the NDIS going - and we just haven't gotten around to foundational supports, but it's really important that we do that.

Martin Davies 11:49

What is the fundamental difference between NDIS support and foundational support?

Hannah Aubin 11:54

Foundational supports are services for people with disability outside the NDIS. Foundational supports of programs and services for people with disability to use, they're not individualised funding packages, which is the case with all NDIS support currently. So there are two kinds of foundational supports, general and targeted. Foundational supports. General foundational supports would include things like information about disabilities, helping developing self advocacy and supported decision making, peer support programs, educational and parenting programs for families and carers of people with disability, as well as some advice to local community services and mainstream services about how to be more inclusive of people with disability. 

At Grattan, we think that these general foundational supports should be run by disabled people's organisations, family organisations, capacity building organisations, because these organisations are well placed to provide information and capacity building services for the disability community and to advocate on their behalf as well.

Martin Davies 13:05

So you're advocating for them not to be run by the equivalent of an NDIS agency, or indeed an NDIS agency itself.

Hannah Aubin 13:12

That's right - they're likely to be commissioned services. So governments would commission organisations to run these programs and services - you know, funding them to do that. So it's not likely to be government service providers. It's more likely to be... other organisations.

Martin Davies 13:30

One of the concerns of Bernardo, who I spoke to, who has a son with autism, was that he felt that it might be a return to the days prior to the NDIS, and he wondered whether there's now a vacuum, and there are no longer the skill sets and the organisations in a fit-for-purpose state to do what you might be asking of them.

Hannah Aubin 13:53

Good question. So... there is still a lot of skill and talent out there among providers and organisations. There are obviously a lot of providers in the NDIS currently who are operating and doing really good work and capacity-building organisations and disabled people's organisations that are still operating. Certainly... the funding that's been available to those organisations so far has been... short term grants, and that probably has eroded some of the, some of the organisations that used to exist. However... you know, however you do it, setting up foundational supports is always going to be a big, a big push and a big uplift from government and those organisations.

Martin Davies 14:40

So... who exactly will be leading on this? Will it be state governments, or will it be... federal governments? Because, again, there's been uncertainty about that and where that might fall.

Hannah Aubin 14:54

From a funding point of view, federal, state and territory governments agreed to fund foundational supports 50/50 back in 2023, so that means... the question now is 50/50 of what? So the negotiations between federal, state and territory governments have stalled recently. The federal government tied in hospital funding into those negotiations, which added complexity to them. They're also, understandably very tricky negotiations. There's a lot of uncertainty about how many people will be accessing foundational support. 

State governments are concerned about the levels of demand, and so there's just need for more clarity around those questions at the moment, and there are some really, potentially large funding commitments on the line for government in these in funding foundational supports. There is a risk that with calling for more new funding into foundational supports, that the negotiations will stall, and we won't see foundational supports anytime soon, and we really need them.

Martin Davies 16:03

From Pillar to Post is produced in collaboration with the Community Broadcasting Association of Australia - and with community media like Powerd Media. Catch the next episode on the Community Radio Plus app, or wherever you get your podcasts. And if you've got a topic you'd like to hear, head to the CBAA socials and let us know. I'm Martin Davies - thanks for listening.