The Rebuttal

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.