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Ten years since the introduction of the NDIS, and it’s time to look hard at the rollout of the Scheme and what’s missing. One key area is any services or supports for disabled people outside individualised plans.
The NDIS currently gives supports to just over 500,000 disabled people. But according to some brand new research, there are 1.8 million of us of working age who are NOT in the NDIS. Where do we go for support?
These supports, also known as Tier 2 of the NDIS, are finally back on the agenda, after a decade of neglect. The new NDIS Minister, Bill Shorten, said that he is interested in developing so-called ‘second tier services’. The previous NDIS Minister, Linda Reynolds also talked about the need for more Tier 2 services, particularly when trying to cut individualised services.
Dr Sue Olney, Dr Amber Mills and Liam Fallon have just released their report about Tier 2 where they talked to disabled people and organisations and found that 90% of disabled folks outside the NDIS couldn’t get the services and support they need. 90%.
The researchers found that disabled people, families and organisations were dealing with:
- complex, disconnected and incomplete markets of services and supports being navigated by people with disability and their families and carers
- a service ecosystem riddled with inconsistent costs, eligibility criteria, information, priorities, accessibility and availability of services
- unmet demand for accessible and affordable services and support, leading to heavy reliance on informal support networks and personal resources for many people who are not NDIS participants.
What was the plan for Tier 2?
So what was Tier 2 meant to be? Tier 2 was part of the original design for the NDIS, fitting between Tier 1 (broad community inclusion and awareness) and Tier 3 (individualised support packages.) The Productivity Commission report said that Tier 2 would do referral to other services for those not eligible for Tier 3.
The NDIS, as part of its Tier 2 program, would also “should also provide general information about specific disabilities including their expected impacts and the most effective care and support options.”
The Commission went on to detail how the NDIS could work with existing not-for-profit community organisations, many of who should be funded under Tiers 1 and 2, or even 3, to continue their work and to expand their community development and capacity building programs.
Another part of this original vision was the now mythical disability support organisations, which were to act as brokers for disabled people navigating this new services market, and perform some of the functions that now sit with support coordinators. These new organisations were seen to be crucial agents, with the sole role of acting for disabled people, including some Tier 2 functions.
What should Tier 2 do?
Bruce Bonyhady says that without Tier 2, the NDIS is an ‘oasis in the desert’. Many disability organisations called for investment in Tier 2 of the NDIS as part of their 2022 Federal Election platforms.
But what do they mean by Tier 2? And is this the same idea that the Productivity Commission had? There seems to be a wide range of ideas about what it should be and do, which is going to make it damn hard to realise. Some of the suggestions are:
- Disability support services for those not eligible for the NDIS individualised plans
- Better access and inclusion in mainstream services
- Specific disability programs across systemic areas, such as housing, education, health
- Disability-led independent information about NDIS support services
In the new report about Tier 2, each of these ideas is explored, with the researchers concluding that there is “a clear gap between the promoted availability and accessibility of support and services to people with disability who are not NDIS participants, and people’s experiences of attempting to find and use them.” Yep.
A sort-of Tier 2
The previous Federal Government inherited an NDIS that they did not want. This was obvious by some of the crucial decisions they made about the NDIS development that has left such a legacy of problems today, including financial ones.
There were two related issues had a profound impact on any chance of the NDIS acting more broadly than the narrow individualised support packages - the staffing cap and the changes to Tier 2.
The decision to cap the total number of staff in the Agency, and to both outsource the role of Local Area Coordinators and give them much of the planning work, has been disastrous. This meant that there were never enough staff in the Agency to adequately rollout the NDIS, or to develop consistent and good quality plans for disabled people. The Local Area Coordinator functions also disappeared, taking away the essential role they were intended to have in linking disabled people with mainstream services, and working to increase inclusion of those services.
Then, in 2015, what was intended to be Tier 2 was renamed as Information, Linkages and Capacity Building (ILC) as part of the policy development, and a number of grant rounds were held from 2018. The program was meant to connect:
“to community and informal supports, mainstream service systems and individually funded packages (IFP), to enable an effective integrated response to disability which supports the choice and control of people with disability, their families and carers.”
Sounds great and just the sort of program that the Productivity Commission had envisaged.
Existing disability organisations, service providers, and mainstream organisations received money to deliver on these broad inclusion aims. For many disability organisations, ILC funding represented a significant funding boost to deliver time-limited projects, with no investment in longer term capacity of those organisations. But a summary review of the program from DSS shows that many of the projects don’t have robust evaluation, that COVID changed what was possible to deliver, and that the short-term nature of the grants should be changed.
A more detailed analysis of all the ILC grants found that it was ‘markedly different from what was anticipated’. The changes in the roles of the Local Area Coordinators (LACs) had meant that they didn’t do the community connector role they were meant to, leaving a big hole for the ILC projects to fill, delivered by disability organisations who told the researchers about their ‘extremely precarious funding with significant gaps in coverage’.
The ILC program papered over the very real funding crisis for many disability organisations, caused by a refusal of the previous government to even index funding to cover costs, but at the same time, constrained what they could do by only granting funds for very specific functional projects.
These grant rounds for individual projects could never address the broader social changes that are need to ensure that disabled people are fully included, and the way this funding was designed and delivered meant that ‘much of ILC activity remains ‘band-aid’ measures that do little to address the ableism embedded across society.’ The research also found that this short term project based grant program was ‘viewed as ‘piecemeal’, ‘scattergun’ and patchy ‘jigsaw’ of funding that undermines the achievement of the ILC outcomes.’ One respondent said that “If you get a grant, you do your two-year work, you stop, you get another one a year later. All of that experience and good will is ... gone and you have to start again. That’s really disjointed - it’s just money down the toilet because you’ve got to start all over again”.
Anecdotally, the ILC program funded some good programs that ended when the grant round finished, but also funded some programs that could not be delivered and resources that quickly became out of date and irrelevant. There was repetition of effort, huge gaps of resource provision, and very little to show for all those millions at the end of these last few years. Certainly no robust, peer led Tier 2, which may have been the aim all along.
The new Tier 2 research found very much the same, with many of the resources created through ILC grants, such as directories of support services, to be out of date, and useless to the disabled people desperately trying to find some help.
History repeating
I’ve been reading the original Productivity Commission work again, this time the transcripts of the hearings that they held across Australia through 2010. Something that struck me was evidence from Lesley Hall, the then CEO of AFDO. She was giving evidence as part of the Australian Carers and Disability Alliance, the coalition behind the campaign for the NDIS, and she hoped that the NDIS could learn from the UK where “if they see that there's a gap somewhere then they can actually commission a service to actually meet that gap.” Imagine that. The NDIS acting proactively to map and fill gaps that met the needs of disabled people.
Lesley also talked about something that ended up strongly featuring in the Productivity Commission report. She told the Commissioners that:
“I think also that this is why this scheme needs to actually have a very strong interface with the system it changed overall because unless we get a lot of that systemic change the need for continued support will be there. So that we need to make sure that this just does not operate in a vacuum; that it does operate with broad systemic change so that the generic services can pick up what they should be picking up in terms of supporting people with disabilities.”
One solution the ILC researchers suggested to fix the gaps in supports and services for those outside the NDIS is a ‘targeted commissioned approach’, and we are right back to the words of Lesley Hall, 12 years ago.
**sigh**
The reason I keep going back to this rich vein of work from disabled people, in the hearings and submissions to the Productivity Commission inquiry into disability care and support, is because we’ve said all this before, and often from the very beginning. The need for the NDIS to work across governments, and for there to be wider systemic change, was something that disabled people have known about for a long time, well before the NDIS was even a gleam in anyone’s eye. Our supports aren’t separate from our existence as citizens, and yet those supports are essential to our inclusion in that citizenship.
What now?
This is long enough now, so I’ll stop here. We need Tier 2 because without it, disabled people and their families are in desperate need, excluded and shut out of the community. In the third year of the pandemic we don’t mention any more, this exclusion has got even worse for so many of us. And yet, I’ve not seen any detailed work about what a disability-led Tier 2 should do, where is should operate, or even who needs it.
We are part of the community. We are part of the neighbourhood. We are a part of, yet so often kept apart. Time for change.