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The Rebuttal

Tag: health

  • Disability Today, How Lucky Are We??

    adefinty2
    Image is of a man. He is wearing a black and white checked shirt. He has a neat clipped beard. His arms are raised and his fists clenched. He appears to be screaming in frustration.

    Australia likes to call itself the land of the “fair go,” where no one is left behind. You would assume that includes people with disability. Sadly, the reality tells a very different story.

    Take the recent announcement by Disability Minister Mark Butler. He plans to remove children with developmental delays and mild autism from the NDIS, replacing their supports with a new state-based Thriving Kids Program. On paper, it’s framed as reform. In practice, it feels like a step backwards.

    The name itself is telling. “Thriving Kids” sounds positive, but it feels like yet another attempt to avoid the word disability—just like “special needs” or “differently abled.” Language gymnastics don’t create inclusion; they obscure reality.

    Even more troubling was Minister Butler’s language around autism and developmental delay. He spoke of “mild” disability and even hinted that some autism might not be permanent. He may not have meant it, but the effect was deeply offensive. By singling out autism in this way, he alienated both the autistic and broader disability communities.

    The Minister insists that there are too many children with autism and developmental delay on the NDIS. But here’s the catch: when I worked in the NDIS, every child under seven—whether deaf, blind, autistic, living with Down syndrome and so on – was categorised as having a “developmental delay” A formal diagnosis of disability was required by age 7. So when Butler talks about “developmental delay,” he may in fact be referring to all children under seven with disability on the NDIS. That’s an enormous clean-out, dressed up as reform. (If the use of developmental delay in young children on the NDIS has changed since, I am happy to be corrected.)

    Could this new model lead to better supports? Perhaps. But that depends on whether states engage constructively. So far, they’ve refused—complaining about matched funding requirements and threatening to walk away. The Federal Government is retaliating with threats to strip hospital funding. Disability, once again, is reduced to a bargaining chip in a political game.

    Meanwhile, people with disability continue to face daily barriers. Recently I attended a workshop where a wheelchair user gains employment, only to find that their heritage listed workplace has no accessible toilet. Because the building is “heritage,” no changes can be made. So instead they wheel themselves 30 minutes each way to the nearest accessible toilet – rain, hail, or heatwave—just to use the bathroom. The time taken to complete the toileting along with the distance meant it was ninety minutes a day lost. This to meet a basic human need.

    Another person I met recently at an employment forum acquires a disability, returns to work, and realises that their office is not accessible. They leave and start their own business. At the forum they asked Disability Employment Providers about funding that might be available. Not one suggested Work Assist, JobAccess, or the Employment Assistance Fund. These are some of the most basic tools of disability employment—and the providers didn’t mention a single one. I sure hope the new Inclusive Employment Australia model with its Meaningful Engagement plans and requirements of lived experience and disability training does a better job than this, it has to!

    This is Australia. This is disability today.

    We are told we are a burden. We are reduced to numbers in budget debates. We are shunted between state and federal governments like pawns. And we have people supporting us that seemingly don’t even understand the programs that they are employed in. All we want is equality—an equal footing in the society we contribute to. Instead, we are reminded daily that we are the burden treated and a problem.

    Disability today. How lucky are we???


  • People Before Profit …

    adefinty2
    Image shows an out stretched hand balancing a gold dollar symbol. In the background is a stylised line that represents a graph showing increased profit.

    I retired. Everyone laughed at me and said I didn’t know how to retire. So I decided to conform to the sceptics and unretire. But only for two days a week, so I am still sort of semi-retired. I potter about the garage and make garden furniture on the days that I don’t work.

    And you know what? These two days a week are among the most rewarding that I have had in my career. I have come full circle and gone back to working one on one with people and influencing the local areas, community development we call it. So I meet with Deaf and HoH people and help them navigate the complex systems that we have in NDIS, Centrelink, Employment or simply assisting parents to understand how they can use their NDIS better. I work with the community to find ways to make services more accessible for people who are Deaf and HoH.

    It is almost instant gratification. You help someone, and a result happens. This could be restoring a Centrelink payment. It could be helping with an NDIS review so that they get a better plan. It might be working with the local community group to provide information sessions. Or with the Health authorities to help them understand the needs of Deaf and HoH people so that they can improve services. It is important work and great fun. I am in my element.

    And I don’t have to worry about making a profit. I don’t have to worry about endless paperwork for Government bureaucracy to show we are meeting guidelines. I dont have to worry about preparing for endless audits. I don’t have to worry about budgets and balancing them. Managing staff and dealing with HR are thing of the past. It’s just facilitating support for the Deaf and HoH community so that they can navigate an infinitely complex system that is not designed for them. I love it!

    It really is just good old fashioned case management. Case management is a very underrated skill. It’s a skill that I developed when I started my career. This was a time when you just went out and did what was necessary. It was a time that you didn’t make decisions based on billables and if it was going to make a profit. Dare I say it, but it was people before profit.

    In a past life I worked at was then VSDC, now Deaf Children Australia. They had an Auslan for families program. I would meet families that wanted to develop Auslan for their deaf kids. I didn’t need to check their NDIS plan to make sure they had enough money. I just arranged things based on their needs. There was a pool of tutors employed casually to work with these families.

    I would encourage families to invite extended family members who regularly interacted with the deaf child to sessions. Wherever possible I would encourage these sessions in the evening so that both mum and dad could take part. I remember one tutor was shocked when at the first session there were something like 15 family members present. Grand parents, aunties, uncles, close family friends etc.

    The logic was that the more people the deaf child could communicate with the less isolated that they would be and the more language exposure that they could get. It didn’t always happen like this, generally it was just the mum and she had the responsibility of being the primary communicator.

    The Auslan for families program was extremely powerful. While it depended on ongoing Government grants, it did not rely on making a profit. It was a program delivered through the old “block” funding model. I wonder if we need to revisit block funding again?

    That word “profit” has changed the fabric of human services. In our world of “capitalist” disability support there is often no support if profit is not forthcoming. I am acutely aware of this because in 2023 I worked for a very large support coordinator agency who would not accept any participants with less than 40 hours of support coordination. It was considered not financially viable to do so. I struggled with this approach.

    My friend Alastair McEwin recently made a Linkedin post where he shared an article by disability inclusion specialist, Elisha Matthews. The article is titled, The Rise of the Capitalist Model of Disability.

    Matthews made a few salient points about the introduction of the NDIS and how it impacted on service delivery. I have copied these below.

    ✔️ Shifting power from block-funded orgs to open-market competition

    ✔️ Monetising support: every need = billable service

    ✔️ Encouraging private investment

    ✔️ Making disability support a profitable industry

    Matthews makes the point that when the NDIS was introduced, “There wasn’t a qualified workforce ready, so regulations were loosened and anyone could become a provider. This created a supply-and-demand crisis—and opened the door to a new reality”

    So what is this new reality? Matthews is very critical of some providers. She feels that this drive for profit has led to, in many cases, “Capitalist Extortion.” This is very controversial. Matthews provides an example of this extortion:

    We are seeing providers threaten people with disability:

    “If you don’t sign this petition…”

    “If you don’t write to the Minister…”

    “If you don’t speak out for us…you could lose access to support.“

    Matthew’s argues that this extortion, with its thinly veiled threats, is not ethical. Matthews believes when it happens that it should be reported to the NDIS Quality and Safeguards Commission and she is right.

    As Matthews points out,

    “We designed this scheme to empower people with disability—not make others rich. We are not responsible for your business profits. If the scheme collapses from unsustainable exploitation, everyone loses.“

    She urges people with a disability to; ” ….. take back the narrative. Let’s prioritise people with disability—not profit.”

    And you know its not just the NDIS providers that are guilty of this, arguably the Disability Employment Service is in the same boat. Where support is prioritised to those most likely to generate profit. Like with the NDIS, there are ethical providers and unethical providers. The profit factor, in many cases, dehumanises the support that is needed.

    So what’s the answer? We need the NDIS, absolutely! I am a strong supporter. But we also need supports that can be provided for those who are most vulnerable. Supports that can respond to need in a way that is not reliant on profit. Supports that can be responsive without having to rely on finding an available support worker. We need balance!

    Perhaps this is what is coming with the new Foundational Supports and the new Navigators model. Perhaps these new initiatives have the potential to provide much needed support in areas that the NDIS cannot. Support that is not reliant on a service providers profit but can respond based on need and good old dose of compassion!

    In the meantime I am getting back to work in a role I absolutely love. As for the rest of it? All I can say is – Watch this space!

    *** The thoughts and opinions expressed in this article are those of the authors alone.

  • Saving the NDIS – Who is Listening?

    adefinty2
    Image is of DPAC protesters outside the Melbourne Convention Centre. Prominent is a tombstone that reads NDIS – 1July 2013 – 3 October 2024

    I am conflicted in writing this article. I am conflicted because in recent weeks I have had some positive dealings with the NDIA, either through attendance to support people at review meetings and even at appeals meetings. This reminded me that there are many great workers within the NDIA and other NDIS areas. Despite this, there is no doubt that NDIS participants and their families are being severely impacted by the changes being pushed through to reform the NDIS. I write this in support of them.

    On 20th January I was invited to attend a protest about the NDIS. The protest was organised by Disabled People Against Cuts (DPAC). This is a dedicated group of disabled people who have become concerned, nae horrified, about the NDIS reforms. They believe that the reforms are killing the NDIS.

    They think the cuts and changes that are being made have meant that the NDIS has lost its original intent. It’s now moved from a model that promoted social inclusion, choice and control to a model that is about seeing people with a disability as a burden and taking away that control. (I should say here that everything that I express in this article are my own views, and mine alone.)

    Let’s take a little trip down memory lane. The last time that I attended an NDIS protest was actually to campaign for it to be set up way back in 2012 or something. Disabled people and their associates campaigned strongly for the NDIS and won. It eventually became reality in 2013. I remember well when the NDIS finally became reality. There was not a dry eye in Parliament House, Canberra. Prime Minister Gillard and Minister for Disability Reform Jenny Macklin embraced in the middle of Parliament. Those were heady days.

    Image shows then Prime Minister Julia Gillard hugging then Minister for Disability Reform, Jennifer Macklin on the passing of the NDIS bill in parliament on March 28th 2013

    The original intent of the NDIS was to have disabled people taking part in our society as much as possible. It also recognised that there were many carers that were going above and beyond to support their disabled children. Sometimes the carers were elderly and still caring for their disabled children who were also elderly. The NDIS recognised that by also supporting carers it would allow them to return to work and make a significant economic contribution to Australia.

    The Productivity Commission recognised the multiplier effect. It recognised that by supporting disabled people to participate both socially and economically, that there would be a return from this investment. People with disabilities could attend theatre, restaurants, go shopping, sporting events and so on. In doing so they would bring with them families and friends leading to increased business income. Employment would be created and so on. It has been said that for every $1 invested in the NDIS that $2.1 was made. No longer were disabled people seen as a burden.

    Well, that was then but this is now. The headlines scream, ‘Coalition denies plans to slash NDIS, but says cost is ‘out of control’ and ‘NDIS to cost $100b, exceeding the Pension’  and ‘NDIS ‘unsustainable’ and ‘out of control’ and ‘NDIS cost to outstrip Medicare within two years, govt says‘

    What ever happened to the stories and data that show that the NDIS is making a difference to the lives of people with a disability? Where are the headlines that highlight the economic benefits and jobs that have been created? There are few.

    You can find articles about the NDIS economic benefit that are mostly written by disability advocates. I couldn’t find anything in the mainstream media. Instead it’s all negative – Cost too much, fraud, abuse; it never ends.

    Meanwhile Disabled people look on as their hard earned NDIS gains are slowly ripped away from them. At the Protest speakers told of children who are being removed from the NDIS. They explained how they are being told to use State based supports that do not exist. They bemoaned the lack of clarity of the much vaunted Foundation Supports, which now will not be ready until the end of the year according to Minister Butler.

    They told of plans that are being drastically cut causing immense stress and even fear for participants lives. They protested the changes in assessments and how this is taking away their much valued choice and control. This massive loss of choice, control and dignity is best illustrated by the placard below:

    Image shows a placard that was part of the NDIS protest on 20 May 2025. It reads – It is horrible having someone you didn’t choose touch your body

    And who is listening to these people? These people that took it upon themselves to protest outside the Disability Services Consulting (DSC) NDIS conference. DSC themselves are a fine organisation that do a lot of good things. They employ people with disability and people with lived experience. But sadly their conference was out of reach of many at the grassroots level. An online Zoom attendance was $720. In person it was $1680. This for a two day conference. Throw in accommodation and travel costs and it is astronomical. One wag commented that to be able to attend they would have had to sell their car.

    There were some great advocates with a disability who attended the conference. El Gibbs, Natalie Wade, Dougie Herd, Samantha Connor and George Taleporos are outstanding and elite advocates who were at the conference. But where were the grassroots? The people who are impacted everyday by the decisions being made to cut the NDIS costs. The people being kicked off the scheme. People who have lost supports as their funding has been cut. People who could ask the hard questions and tell their stories. Where were they?

    Certainly not the people at the protest because the Melbourne Convention Centre security would not let them in. God knows, given that 45% of people with a disability live below the poverty line, they certainly could not afford to pay to attend.

    And so the Government steamrolls forward with its NDIS reforms. All it seems at the moment is cuts to plans and very often, participants being told that they no longer qualify for the NDIS. There is a hyper focus on fraud instead of internal processes. What of the much vaunted Navigators and Foundation supports? Are people with a disability truly involved in the co-design of these new supports? Nobody knows. I suspect not even the NDIA!

    Meanwhile people with a disability, their carers and their families are screaming. They are hurting and they are stressed. Some fear that cuts in support will put their health and lives at risk. Is the Government listening? Are service providers listening? Are people with a disability truly involved in the co design of the reforms beyond the elite advocates mentioned here?

    Well given that people with a disability protesting could not even get through the doors of the huge and important DSC NDIS conference it doesn’t seem so. Who really is listening?