TRANSCRIPT
In 2020, the Federal Court ruled that an NDIS participant had the right to use their funds to access a sex worker.
Senator Jordan Steele-John said at that time the woman, who had multiple sclerosis, had been battling the National Disability Insurance Agency on this point for a long time.
“The NDIS has been fighting this participant's desire to use some of their plan funding this way, in line with their goals, for four whole years.”
These types of services are meant to have been available to NDIS participants ever since the Federal Court ruling.
But that's not what has happened.
Anita Brown-Major is an occupational therapist in Melbourne.
“It does not mean every person with a disability, their only access to sex is with a sex worker. And the sex workers we work with will actually say that. If I have a hundred clients coming through, you might have four that we will end up with some sort of report with the NDIS for sex work. And of those, all of those have been rejected in the last year that we've seen.”
Ms Brown-Major's experience is not unique.
NDIS Minister Bill Shorten says it's routine practice.
“On average there are 100 million invoices or transactions paid per annum. A hundred million in the NDIS. At this stage, for the last 1- month period, there were 228 requests for sexual support activities; 228 requests. None were approved.”
Sexual supports are now a part of legislation before the Senate, legislation that will formally ban these services - among others - from being approved in NDIS service plans.
The Minister says he doesn't understand why anyone would object to that.
“Why do journalists keep asking me about it? I answer the questions I get. I'm not banging on about it... What the government wants to do is just be very clear about what you can spend your NDIS money on. So yes, we don't think it should be spent on certain services.”
The wider goal of the bill is to reduce the growth in spending on the NDIS to make it sustainable.
Its annual cost is expected to surpass $50 billion by 2026, higher than the annual cost of Medicare.
Bill Shorten told a gathering in Perth in May that the government essentially wants to see the NDIS limited to the most complex cases.
“The NDIS cannot be the only lifeboat in the ocean. That's the idea that if it's the only support a person with disability can get everyone's going to swim to that. Understandably so. But that doesn't mean that scheme is sustainable.”
Mr Shorten wants the states and territories to handle what the NDIS cannot - or, in his view, should not.
That would likely happen in conjunction with the NDIS and the federal Department of Social Services.
South Australian Premier Peter Malinauskas confirmed after the December National Cabinet meeting that those discussions are well underway.
“The state governments will have a role in the development and the design of those foundational supports. That's important because it means we've got a clear eye around what will be the state government's responsibility and what will be the federal government's responsibility, and how much it will cost.”
Dr Martin Laverty was among those involved in the original design and implementation of the NDIS.
On behalf of Aruma/Alliance20, which represents disability service providers, he has told a senate committee examining the bill that many of the changes to be introduced in conjunction with the states and territories can't happen without the legislative framework being in place first.
“The impact of delay is queuing other reform necessities for both the agency and the service sector to deal with... And specifically the co-design commitment that has been given... A further delay to that co-design - that won't commence until after the bill is passed - increases the queue of reform. And at this time, the urgency to reform the NDIS cannot be understated.”
But other disability groups have reservations.
The CEO of Down Syndrome Australia, Darryl Steff, has told the inquiry there are many unknowns about what a wider disability support system, with the NDIS as one of the options, might look like.
“There are some important reforms contained within this legislation, and it is really important that these reforms happen in the future. However it's disappointing that the legislation has come in advance of a full response to the NDIS review so that there is not a complete picture of the implementation roadmap, and how everything will or could sequence through the changes that need to come in order to manage the sustainability of the scheme.”
Concerns also remain about who will get to decide what the disability supports might ultimately be.
And when it comes to sex and disability, some advocates say misunderstandings and stereotypes could potentially play into these practical uncertainties.
Anita Brown-Major says the National Disability Insurance Agency is already resistant to what experts are saying people with disability need.
“We have (in the practice) an OT (occupational therapist) who is also a sexologist that has - I think they did about five reports over a year ago... All the reports that we've written talk about what that person can and can't do, what we've tried up until this point... And we will do - the NDIS will spend money on these experts reports and then every single one of them have been ignored... The amount of money that has been wasted on court cases and lawyers' fees - and even reports from myself - is ridiculous.”
People With Disability Australia president Marayke Jonkers says there are misconceptions about what sexual support services actually involve.
“Two people who both have a physical disability - and the Australian courts have recognised sex is a human rights, a part of everyday life. Now (if) this couple need assistance to get into position to have sex. Do we expect anyone who cooks, cleans, or provides other services in the house to assist them in the act of having sex? Or perhaps would that best be performed by someone with specialised services?”
Anita Brown-Majors agrees.
“We do a lot of work with people maybe post-injury like MS or Huntingdon's Disease or stroke, and how do they re-engage with their bodies and their partners. We do a lot of work re-engaging with sexuality post-cancer treatments.”
Ms Brown-Majors says simply educating clients is a big part of her role too.
She says there is a fundamental lack of understanding across society about people with disability as sexual beings.
“Folks with disabilities are often seen as you don't have a right to that education or you don't need it because you won't ever be a sexual being in the future. But we know that the evidence is that young folk with disabilities are more at risk of sexual assault because often they're not given the education. So we do a lot of work within the younger population about body awareness, body parts, working a lot of the time with teachers and other professionals about consent for touch.”
The concern appears to be that the need for sexual support is going to get 'lost' in the ongoing conversation and debate about sustainability, and what's reasonable and fair.
Many advocates believe the foundational services that the states are negotiating with the federal government will address the huge unmet demand from people who are currently outside of the NDIS.
But Darryl Steff says there's a lingering concern about potential negative impacts.
“There is and has been in recent years a significant mistrust of the NDIA. And the NDIA are doing their best to rebuild the trust that participants have in that scheme - but if some of these reforms are not done in an appropriate way, and not co-designed and implemented in a sensible sequence, then there is a significant risk of further harm to participants, which will damage the scheme overall.”
There are no clear details about what these supports might look like, and if sexual services will be among them.
But Catherine McAlpine, from Inclusion Australia, says she would prefer the foundational supports weren't already set in stone.
“I don't want anyone telling me exactly what they are. I want to be part of the conversation and for our community to be part of the conversation to decide what they are.”
