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What will it take for the NDIS to put disabled people first?

With the Federal Government due to soon release its response to the Tune Review into the NDIS, El Gibbs issues a timely challenge, calling for changes that put disabled people first.


El Gibbs writes:

In 2020, can the National Disability Insurance Scheme (NDIS) live up to its promise to disabled people, or will the Scheme continue to prioritise everyone except us?

One answer to this question could be in the Tune Review into the NDIS. The Federal Government called the review in August 2019 with Minister Robert saying that this was “to set new standards for how long it takes people to get their NDIS plan or have their plan reviewed”. 

Consultations were held around Australia, a survey was also conducted, and many, many submissions made. The review report was released in January 2020 and the Government is due to respond soon.

For many disabled people and their organisations, this was just yet another inquiry, to say the same things to. 

Every Australia Counts said in their submission to the Tune Review that “we are all trapped in some NDIS version of Groundhog Day where we keep identifying the same problems and potential solutions – but each day we wake to find very little has changed.”

That pesky red tape

One of the stated aims of the Tune Review is to tackle delays by ‘reducing red tape’ through changing the original NDIS legislation. 

A main recommendation is for the introduction of the Participant Service Guarantee (PSG). Disabled people are called ‘participants’ in NDIS jargon, so the PSG is meant to be about how disabled people are guaranteed a service. 

The discussion paper about the PSG says that it will “set new standards for shorter, but realistic timeframes for people with disability to get their NDIS plan and have their plan reviewed. Cutting red tape through the Review, combined with specific service standards under the Guarantee, will assist people with disability to have positive and consistent experiences with the NDIS.”

Advocacy for Inclusion said in their submission that the “NDIA needs to become less bureaucratic, more people-centred and approachable to ensure that voices of people with disabilities, their families/carers and support networks (including advocates) are being measured correctly, transparently and openly.”

To end up with the PSG as an answer, the questions about the functioning of the NDIS become all about a service model, rather than the disability rights the NDIS is meant to help make real. Issues to do with planning, or access, or getting the right supports, boil down to nothing more than the need to improve customer service. If staff and systems at the NDIA get better at serving disabled people, then everything will be fine.

Pauline Vetuna interviewed many different disabled people for a day-long broadcast for International Day of People with Disability on community radio 3CR in December 2019. She heard from Aboriginal and Torres Strait Islander people with disability, as well as disabled people of colour about their experiences with the NDIS.

Cubbie Mako explained to Vetuna what this red tape is like:

We want to use it [the funds in the NDIS plan], but we can’t, we can’t move because of the additional requirement of the forms they want from us.

And we’re waiting. Yeah, we’ve just waited for their approvals and it’s dragging. It’s months. We’re waiting for months here. So that’s quite frustrating.”

[Interview used with permission from both Mako and Vetuna]

Complexity as a barrier

The Tune Review recommendations acknowledge that the experience of the NDIS for disabled people is a world away from what they actually need and want.

Many disabled people told the Tune Review “that they could not find accessible information about the NDIS or how to lodge an access request and that talking to the NDIA left them feeling disempowered and not valued as an expert in their disability.” [Tune Review 3.2]

This is the complexity that has become a significant barrier for disabled people trying to access and use the NDIS, and a world away from a system that we would design for ourselves.

Vanimali Hermans understands this all too well, writing about her mother, Julie’s, experiences in a submission to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. 

“Julie’s interactions with the National Disability Insurance Scheme were nothing short of hell. She felt the scheme “tortured her” and was a constant source of anxiety and dehumanisation. Julie felt small and at the mercy of a bureaucracy that at its best did not care for her, and at its worse actively sought to make her life worse.”

The Tune Review, as well as every other inquiry into the NDIS, has found that the increasing complexity of the Scheme, at every stage, puts a significant burden on disabled people. 

This complexity also acts as a significant barrier and is leading to a two-tier system where access to the NDIS, the quality of the plan and the supports they can access are directly tied to how much disadvantage they experience and whether they have access to advocacy. 

Ricky Buchanan knows about the impact this complexity has on her day to day life. She had received through the previous disability support system, funded through the Individual Support Packages in Victoria. Transferring her supports to the NDIS has meant a huge increase in administrative tasks. 

“The administrative burden is much more, and the flexibility (can I spend this on this thing) is a lot worse. With the old scheme, they decided how much money I needed a year, then every month I would get 1/12 in my bank account. I didn’t have to get approval for every little thing, just had to keep my receipts.”

Ricky is now keeping a record of this admin, and says that “so far, it looks like more than half an hour every day on average – 3.5 hours a week just on admin, conservative estimate.”

Cubbie Mako has also found that this administrative burden, and complexity is hard on their family, as they explained to Pauline Vetuna on 3CR:

For example, right now they just had a change with the rules on, they call it assistive technology.

So this is a 14-page form within the system of a already budgeted plan of my child, which is kind of going around in circles a bit, which I couldn’t understand at this point.

Why do you need another 14-page form for assistive technology approval when her plan is already approved?”

Academic research backs up the experiences of disabled people, finding that “skills required to successfully negotiate service systems leads to disproportionate benefit to the middle class” and that “schemes based on personalisation require an unprecedented level of skills and resources at the individual level – requiring citizens to manage budgets and navigate hugely complex administrative systems.”

In a letter about proposed reforms to the US disability support system, a group of academics with experience in the impacts of complex administration said:

An extensive literature from public policy, behavioral science and public administration scholarship documents that relatively minor barriers such as learning about new programmatic rules (learning costs) or completing additional paperwork (compliance costs) or dealing with stressful and intrusive administrative processes (psychological costs), strongly influence whether people sign up for benefits they need and desire.”

The Tune Review noted that “the complexity of the NDIS (as a system in itself) is causing significant confusion and frustration for many people with disability. Consultation feedback suggests that some people with disability have found it difficult to navigate through ‘the bureaucracy of the NDIS’ and that the NDIA is not delivering what the NDIS promised them.” 

And yet, the Review doesn’t make recommendations about tackling this complexity, nor anything directly about including this in the Participant Service Guarantee. The PSG recognises the need for more accessible information, but that still makes the problem here about disabled people, rather than about the NDIS itself.

Faro Musodza told Pauline Vetuna at 3CR that engaging with the NDIS “was quite taxing because it takes such a long time, you’re having to chase up reports and things like that. Making sure that they’re saying the right thing so that it can get the right amount of funding.”

Are disabled people really ‘hard to reach’?

The Tune Review says that the NDIS isn’t reaching many communities of disabled people, noting in particular Aboriginal and Torres Strait Islander people with disability, CALD communities and people with psychosocial disability.

Again, this isn’t new, or some kind of startling finding from the Tune Review. EVERY single other review has found the same issue – that the NDIS is repeating and replicating existing marginalisation and inequities in the disability support system.

In the language of the NDIS, communities who aren’t engaging with the NDIS are called ‘hard to reach’. This imagines disabled people as deliberately avoiding the NDIS, hiding from the benevolent government services that benignly want to help.

More accurately, for many communities, the NDIS is too hard to access, to use or isn’t seen as a system that understands or prioritises disabled people.

For Aboriginal and Torres Strait Islander communities, the barriers to access the NDIS are many and have been explained to the NDIA so many times before. 

Dr Scott Avery, in his PhD Culture is Inclusion, found that “the statistical data and testimony of participants show that intersectional inequality is acute and pervasive across all supports for Aboriginal and Torres Strait Islander people with disability; including disability services, health, education, employment housing and transport.”

Scott Avery presenting in 2018 on inclusive approaches to disability. Photo by Marie McInerney

For example, the original Productivity Commission report into disability care talked extensively about the barriers that Aboriginal and Torres Strait Islander communities faced when accessing disability support. 

The report found that “Indigenous Australians also face significant barriers to accessing disability support services. This occurs due to social marginalisation, concern about approaching government agencies, cultural attitudes towards disability and services that are not mindful of cultural differences.” 

First Peoples Disability Network of Australia (FPDN) is the peak body for Aboriginal and Torres Strait Islander people with disability. FPDN is run by and for disabled people, and has long advocated for a specific strategy for Aboriginal and Torres Strait Islander people with disability.

They launched their 10 point plan in 2013, and updated it in 2018. This detailed plan talks about the importance of Aboriginal and Torres Strait Islander controlled and run services, and the vital role that disability-run organisations can play in enacting the strategy.

The Tune Review recommends an outreach service to several specific communities, including Aboriginal and Torres Strait Islander people with disability. The report outlines the measures the NDIA is already doing to reach into Aboriginal and Torres Strait Islander communities, such as working with Aboriginal-led organisations, being present at Aboriginal events, and working directly with schools. They acknowledge the need to focus “on information exchange and building trust with elders and members of the community to build trust before being invited to work within a community.” [Tune Review D.19]

The review recommendations are a world away from what Aboriginal and Torres Strait Islander people with disability have asked for – recognition that their specific concerns require far more than just ‘building trust’ with the NDIA.

For Julie Hermans, the NDIS was difficult to use, and made a difficult situation even more impossible. When Julie desperately needed somewhere to live, she found that:

the NDIS would not provide Julie with SDA (specialist disability accommodation) funding until she could provide evidence she had been accepted into disability accommodation, and no accommodation would secure her a place until she could show she had funding.

This left Julie trapped in hospital for months, and was only resolved after media intervention.

This intersectional inequality, where racism and ableism mix and amplify, has to be addressed by the NDIA through more than just an outreach program. 

Dr Scott Avery talks about how intersectionality is about power relationships in society. Separately, Aboriginal and Torres Strait Islander people and disabled people experience marginalisation and discrimination, but for Aboriginal and Torres Strait Islander people with disability, this marginalisation and discrimination is significantly increased. 

The Tune Review recommendations don’t listen or acknowledge the expertise of Aboriginal and Torres Strait Islander people with disability.

What’s missing?

One of the other areas that the Tune Review focuses on is the friction between different systems – both Federal and those in states and territories – and how that affects different communities of disabled people. 

The recommendations ask the Disability Reform Council to look at what’s happening for people with chronic illness, that work is done to define more clearly what support is funded, and to make sure the boundaries between so-called mainstream supports and the NDIS are further codified. 

These boundaries that the Tune Review refers to are doors slamming, and a litany of ‘no’ being said to disabled people who need support. This defining is about who can get support and who can’t, narrowing the entry requirements and limiting supports more and more.

Issues that didn’t get much of a mention, and are behind many of the issues and delays, are a lack of staff training, a cap on staff numbers and flawed IT systems. These were largely missing from the Tune Review report, meaning that change is unlikely to happen in these critical areas.

There have been repeated calls for better staff training for people who both work at the NDIA, and those around it, such as Local Area Coordinators (LACs). Disabled people have found that staff often have little to no understanding of disability, let alone disability rights or the social model of disability.

Sam*, an Autistic person, told Croakey that over and over they had found that the people they were dealing with at the NDIA, such as LACs and planners, didn’t have an adequate understanding of disability rights, or even the specifics of their disability. 

They had also experienced an increasingly common problem – only getting support for one disability, when they have more than one that needs support. Sam has been left without enough supports to get to work, because the NDIS doesn’t have room in its system for us to have more than one disability. 

The Tune Review found that many people with disability didn’t have good experiences with NDIA staff, but accepted that the current training system was adequate and made no recommendations about how some of the cultural issues, about how staff understand disability and treat disabled people, could be remedied. The report notes the NDIA investment in ‘disability awareness’ training, instead of understanding the need for training about the rights of disabled people. 

While training was left out of the Tune Review’s recommendations, the Joint Standing Committee on the NDIS released their interim report on NDIS planning in December 2019, and recommended more training for “all persons involved in the planning process (particularly NDIA officers and LACs)”.

As well, the National Disability Strategy consultations found that there was a “need to strengthen the NDIS workforce and better training for NDIS staff and other disability workers was mentioned regularly throughout the consultation.” 

Rights are very different from awareness. People can be aware all they like about disability, but that still doesn’t mean they understand that we have rights as disabled people. A right to live in the community, a right to support, a right to make decisions, a right to work, a right to be equal. This difference is fundamental to how we are seen and treated by the NDIS.

Gary Kerridge, a former worker at the NDIS, and Deaf person, describes the Agency culture as being due to the “NDIS [being] stacked with public service bureaucrats that had been trained to say no. Their inclination, he believed, was to deny services as this is a bureaucrats mentality.”

He describes processes that focus on the number of plans being approved, rather than on the quality which leads to “priorities within the NDIA and partner organisations are screwed. It’s wrongly targeted mainly towards numbers and less about quality outcomes.”

Another key issue is the staffing cap that has been imposed on the NDIA. This has significantly harmed the expansion and capacity of the Agency, and imposed delays and structural issues on disabled people trying to get support. This cap has led to long delays with initial access, then getting a plan , and again, with any review or changes to those plans. Each step takes months, leaving disabled people without essential support. 

The new NDIA CEO, Martin Hoffman, announced an increase of 800 staff in 2019, but the cap remains in place. This often leads to the outsourcing of key Agency functions and an increasingly large amount being spent on consultants and contractors. As well as the cost, this also outsources the expertise in disability, at a time when the NDIA needs to be building its knowledge of and experience with disability people.

In their submission to the Tune Review, Independent Advocacy in the Tropics said that the “current cap on NDIA staffing is unrealistic and is one of the principal causes of both delays in decision making and poor-quality decision making”.

The Tune Review notes that there needs to be priority given to information and communication technologies (ICT) upgrades, including to let disabled people track how their NDIS applications and plans are going. The Review says that “there is merit in the NDIA making better use of information technology and digital solutions to improve the participant experience.” [Tune Review 3.72] This is so far from what is actually needed, that it would be laughable if it wasn’t so serious.

The Federal Government is due to respond to the recommendations in the Tune Review soon, but will this be enough to turn the focus of the NDIS focus back on to what disabled people need from a support system, or just more of the same?

The NDIS needs to deliver changes that put disabled people at the centre of everything that the Scheme does.

This means that disabled people can get access to the Scheme, develop a plan and find the right supports to live a good and equal life. This Review is the first part of that change, but more needs to be done.

• My sincere thanks to Ricky, Sam* and Vanimali for speaking with me, or allowing me to use their stories for this piece. I am very grateful to Pauline Vetuna, and Cubbie Mako and Faro Musodza, for allowing me to use their interviews from the 3CR Disability Day broadcast. Sam* asked that they remain anonymous, as they were concerned about repercussions from the NDIS for speaking publicly about their story.

• El Gibbs is a writer about disability and social issues, and winner of the Gavin Mooney Memorial Essay Competition in 2014. This article is written in a personal capacity and not on behalf of People with Disability Australia, where Gibbs is the Director, Media and Communications. Follow on Twitter at @bluntshovels. This article was funded by Croakey’s public interest journalism funding pool, and we welcome donations to enable further such commissions. 

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