The fight for the future of the NDIS

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Right now, there is a fight on for the future of the NDIS. On one side is the Federal Government, determined to have total control over the Scheme, and to change its very fundamentals. On the other side are disabled people across Australia, disability advocacy organisations, allied health workers and disability service providers, urgently telling them to stop.

Woman using a wheelchair to go down a ramp (Iya Forbes/Getty Images)

The Minister for the NDIS, Stuart Robert, and the NDIS CEO Martin Hoffman insist that everything is fine, and that they are really, truly consulting with disabled people and the disability community. But consulting, without listening, is just spin, and no amount of spin can hide what they are trying to do.

Minister Robert is adding fuel to this fire with increasingly inflammatory claims about people with disability using NDIS funds to buy yachts, and billions of dollars being potentially spent on sex work services. The NDIS CEO Martin Hoffman said the quiet part out loud in this interview, acknowledging that the ‘push to redesign how personalised budgeting works in practice is also being driven by the need to ensure the long-term financial sustainability of the scheme.’ 

All this goes to the very heart of what it means to get support, to receive care, to have our lives entwined with services non-disabled people rarely encounter. 

Beyond the details of these proposed changes to the NDIS are broader disagreements about the very nature of how supports are provided to disabled people. Are we poor broken souls, who can have watchful charity if we behave ourselves, or full citizens who need supports to live our lives as we see fit? Who gets to decide and who gets control?

The charity model of disability drove disability services for centuries. Disabled people were seen as the passive recipients of the good works of non-disabled people. Our essential supports subject to the whims and fashions of others. The experts on disability being those who felt sorry for us and knew, of course, how to help.

 

'A rights-based support system, that gives disabled people a say about the care they recieve and who they receive it from, is what the NDIS was meant to be all about.'

 

This model was resisted by disabled people, and still is. The history of the disability rights movement in Australia includes pivotal moments when disabled people, particularly disabled women, protested about being treated this way.

The charity model still exists in Australia today, when it comes to our supports, the essentials we need to live our lives. Disability services are overwhelmingly run by non-disabled people, with not a disabled person in sight, let along running the joint. Disability media narratives often feature non-disabled people, talking about us, like the experts they think they are. Disability conferences full of non-disabled people talking all about how they know best. Our voices, our expertise, our knowledge, relegated to the back row.

The NDIS is meant to change some of this. The shift in funding, from services to disabled people, was intended to move our supports from being bestowed upon us by non-disabled people, to being what we decided on. And for some people, that’s been what has happened. For everyone else, well, there’s still work to do. Power, that long rested with those good folks doing good works, isn’t being relinquished easily or quickly.

A rights-based support system, that gives disabled people a say about the care they recieve and who they receive it from, is what the NDIS was meant to be all about. Every disabled person was to provide evidence of not just what they can’t do, but also about what kind of life they would like to have, and then be funded to do exactly that.

NDIS supports are provided if disabled people can prove that they are ‘reasonable and necessary’, and here’s where we come back to Robert’s claims about billions of dollars being spent on sex work services.

In 2020, after years of fighting a disabled woman, the Government was told firmly by the Federal Court, that they had to allow the NDIS to fund sex work services for disabled people who could prove that it was reasonable and necessary. In response, the Minister has said that he wants to change the NDIS legislation so that he can decide what is reasonable and necessary. Great.

In several interviews, the Minister has made wildly incorrect claims about this case and what it means for the NDIS. The Federal Court threw out the idea that funding sex work services would cost billions, saying that this was based on false assumptions that everyone with NDIS supports would suddenly also claim for sex work services and be able to prove they are reasonable and neccessary to their particular needs.

Alongside this push to have total control over what disabled people can have in their support plan, Minister Robert and the NDIS CEO are pushing hard to change who those plans will cover.

Hoffman and Robert describe independent assessments making the NDIS as ‘consistent across functional capacity, life environment, age and socio-economic outcomes’ but it is clear that they mean changing and cutting the NDIS. Minister Robert is popping up in marginal seats in South Australia and Tasmania talking about inequities in the NDIS, as though this issue hasn’t been ignored for years.

Currently, a disabled person needs to fill out a form, and get as much evidence as they can, usually from their GP and medical specialists, about the kind of support they need. This can be a difficult and expensive process, that can also lead to significant disparities in the type and amount of support a disabled person may end up with.

Independent assessments have been proposed as a way of making this fairer. An independent person, who doesn’t know or isn’t familiar with the disabled person, will visit them at home and fill out some standardised questionnaires, and that will decide what kind of support a person will get. Minister Robert and NDIS CEO Martin Hoffman have both stated that this will mean that disabled people with similar impairments and needs, will get the same supports. 

Disabled people and advocacy organisations have pointed out the unfairness of the NDIS since the beginning. Marginalised disabled people are missing out on the kind of individualised supports that would let them decide how to live their lives.

 

'We are chided for spreading misinformation, or told we are not really understanding these reforms. We understand just fine thanks, which is why there is so much concern.'

 

The major review into the NDIS, the Tune Review, found, again (just like all the previous inquiries) that this is a problem, and needs to be fixed, and recommended introducing independent assessments, alongside a range of other recommendations. 

Tune said that these independent functional assessments would only work if there was a ‘willingness of prospective participants and participants to work with NDIA-approved functional assessors’ and ‘those assessors providing truly independent functional capacity assessments, so they are not perceived as agents of the NDIA or a tool designed to cut supports from participants.’ 

It doesn’t look like either of those conditions will be met, or that any other of the Tune recommendations are going to be implemented.

There have been some consultation since the announcement last year, with closed door meetings with disability advocacy groups, and a Parliamentary Inquiry. Those submissions have overwhelmingly spoken strongly against the independent assessments.

Three days after the submissions closed, and before the legislation to allow them to happen has passed Parliament, the NDIS announced which organisations would be delivering these assessments. So much for all that consultation.

The disability community has come together to oppose these changes, as have allied health groups. Disabled people have put in submissions and contacted MPs. All of this is being ignored. 

Instead, we are chided for spreading misinformation, or told we are not really understanding these reforms. We understand just fine thanks, which is why there is so much concern.

The NDIS was meant to change the way that our supports were provided, moving the system from charity to rights. The Productivity Commission report that Minister Robert is so keen on quoting said that what was needed was ‘a coherent and certain system for people with a disability is required — with much more and better-directed resourcing, a national approach, and a shift in decision-making to people with a disability’.

It looks like we’re moving towards a narrow, tightly controlled system that will be nothing of the kind. Minister Robert and the NDIS must stop this process now, and listen to disabled people and the disability community.

 

 

El GibbsEl Gibbs is a freelance writer specialising in the area of disability and social services and has over 15 years experience in the community and NFP sector, as well as politics. Find her on Twitter @bluntshovels.

Main image: Woman using a wheelchair to go down a ramp (Iya Forbes/Getty Images)

Topic tags: El Gibbs, disability, NDIS, social model, charity model

 

 

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Existing comments

It really is appalling that people like this Minister seem to think it’s the norm that everyone wants to abuse the system. The focus should be on providing each individual person the support they need - which is always going to be different to the next person, even if they have the same conditions. My son has ASD and his needs are different to any other ASD child. There’s plenty of things that can be funded that he doesn’t need or won’t benefit from and what we do need cannot he provided. I don’t know why the baseline is that everyone will lie and try and milk it for what they can. The majority of people just want support. I can also well understand why in certain circumstances funding sex work services would be totally valid. I too sincerely hope that they start actually listening to disabled people and understanding what it really should be about. Great article, El. Thank you.
Kellie Warner | 18 March 2021


Thank you for challenging the narrative the Government is creating and using to remove our choice, voice and control. If they truly believed in independent assessments for fairness they should be voluntary. There was an NDIA participant focus group to provide feedback; they chose FIVE people (not all participants) and then cancelled the focus group anyway. I seek out and apply for feedback opportunities with the NDIA. Their idea of consultation is providing a carefully chosen (from a large amount of applicants) group of people to a one hour “focus group” which I’ve been told is more like an “education session”. The limited time frame and number of participants shows they have no intention of genuinely consulting. I’ve never been chosen for one of these groups; no reason given except others are better qualified (to make decisions about MY NDIS?). The latest; “How to tell people about the changes” included the topic; How much should people be told? How should we tell them? It’s disgusting, goes against the Act and leaves me feeling that I’ve lost my future before it’s begun.
Erika Gelzinnis | 19 March 2021


How are people with lived experience of trauma are meant to deal with being put in a position of near total powerlessness with an “Independent” assessor they’ve never met before but yet has a 100% say in how we live the next 12 months of our lives? Given the high rates of abuse and assault for women with a disability, and the fact that some of us have ptsd resulting from medical mismanagement or maltreatment, these assessments are very likely to retraumatise and cause further damage. We have just seen very clearly how asymmetrical power structures enable abuse and violence, well that’s exactly what this is. Who has all the power in this situation? How badly can they behave and get away with it because they know you are relying on them to tick the boxes that will provide access to funding for your day to day supports, without which life is incredibly difficult. The restructures currently being imposed on something that was meant to be empowering, meant to help us achieve our goals, are turning it into an institution that hurts instead of helps. What’s the point of holding a Royal commission into abuse and neglect of people with a disability when you are purposely building asymmetrical power structures into our lives that put us at direct risk of being “taken advantage of” as well as inflicting further trauma by making this something that is done TO us rather than being a process we can participate fully in. This is not a fair or equitable solution. Making OT conducted functional assessments a Medicare item - that would solve the problem of inequality of access. Not this.
Sarah | 21 March 2021


The whole NDIS system, to those not familiar with it, even those who do not have severe disabilities, can be difficult. My wife, who is in her early 60s and a highly intelligent and effective person, began to suffer the ravages of Alzheimer's a while ago. She was finally diagnosed as such just over 3 years ago. Even though I am tertiary educated and worked in the public service for many years, I found the whole NDIS application setup daunting. I had great assistance from Dementia Queensland with the application. I also found the NDIS staff extremely helpful. Politicians often see things in primarily fiscal terms, especially regarding those with no effective advocacy. The supporting sources for my wife's application were a superb GP and excellent supporting specialists. As you say, Ms Gibbs, independent assessors need to be truly independent, not those instructed to minimise access. Obviously there are fiscal constraints, but the 'one size fits all' model is inappropriate. I can understand disabled women, who have been sexually assaulted, being very chary of any official setup, given the history of sexual assault against the disabled. Of course, there need to be more disabled social workers and other professionals and administrators within the system. Once again, I think we need to look at the way they do things in Scandinavia.
Edward Fido | 28 March 2021


From my observations: 90% of NDIS funding is spent on administration and only 10% on actual provision of equipment and services. The Occupational Therapists who sign off on all plans and spending permissions always get their money but the NDIS recipients do not always receive what they need to lead more productive lives but are called upon to justify several times over why they have to have accessible bathrooms and special chairs in more than one room or a new computer that connects them to the NDIS website so they can input the required data. Many seriously disabling conditions, such as emphysema, are not even considered for eligibility.
Anna | 16 April 2021


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