Submission 1917
When our child was diagnosed in 2009 with “classic autism” on the autism spectrum using the-then DSM-IV diagnostic criteria, the ONLY type of therapy that had been “scientifically PROVEN” to get results was Applied Behaviour Analysis (ABA). It was labelled the “gold standard” of therapy.
As his parents, my husband and I researched all the various types of therapy that were available at the time, and considered what research had been done into their efficacy and the moral/ ethical principles they were founded upon.
At the time we chose a different type of therapy for our child instead of ABA, based on the principles that aligned with our values.
At the time, I met another mother with a son with the same diagnosis as my child. She commented that it was a shame we hadn’t chosen ABA therapy. She said that her in-laws had paid for their son’s ABA therapy, and they were so thankful because their son had improved “so much” and they could not have afforded the ABA therapy without help from their in-laws.
I guess the two things from this conversation that need to be considered are: what constitutes “improvement;” and what is the timeline for “improvement?”
This is VERY important in the context of the changes that are being made to the current NDIS legislation.
Fast forward to now, and those same 3 year old boys are now 20 years old.
One still lives at home with family with daily connections and confidence he is loved, and the other is now in a shared home facility with only infrequent visits from his family.
Now, if you would argue that the individual who is costing the tax payers less money is also the one that improved the most, then that child would be the one that was kept away from ABA therapy.
He enjoys living at home with family and accessing therapy and supports through the NDIS, and is achieving goals that are meaningful for him and engaging with the community.
This young man costs tax payers LESS than the one that was so “lucky” to get ABA. So if “massive improvement” as a child means costing tax payers more as an adult, then you could argue anecdotally that the short term gains cost far more down the track.
While this is a short snapshot, comparing 2 autistic boys of the same age, we can see that through myriad research including meta-analysis that ABA therapy has been labelled
Submission 1917
abusive by neurodivergent adults that received ABA therapy as children, and that they have now suffered mental health problems as adults.
Research shows that autistic adults have the highest rate of unemployment, when compared to unemployment rates among other disabilities or the general population.
They have higher premature mortality rates, they suffer from more bullying, victimisation, able etc
The autistic community is a group that are unfairly stigmatised and isolated/ erased from society.
The original goal in creating the NDIS included early intervention and moving away from the inequality of state based services.
It was visionary because the principles were based on being proactive and improving outcomes into the future, and allowed for autonomy/ choice and control and a person- centered approach.
The changes that are currently being proposed directly violate those principles.
To remove people or deny entry to the NDIS means that you are returning to the inequality of state based services, which means that socio-economic status and where you live will impact lifelong outcomes to health and independence.
When I first met this other mother, my family and I had recently moved from Tasmania to Melbourne because wait lists and services were so strained in Tasmania.
At the time, the process of appointments through St. Giles took 6 months from referral to diagnosis. It’s laughable now, given the lead time for diagnosis through St. Giles is 36 months and through TADD is about 20 months.
NDIS support means that people in remote and rural communities in Tasmania (a fair portion, given now disjointed the geography of Tasmania is) can access therapists via telehealth, because resources in Tasmania with NDIS legislation as it has been are already unavailable or non existent.
We lived in Melbourne while our children were young during early intervention years, but moved back to Tasmania once we felt we had grown and developed as individuals and as a family.
But if these changes are made to NDIS, we will be left with no choice but to move back to the mainland.
Submission 1917
Living in the rural community that we do, we have just lost the permanent GP that was here, and our rural community has only the inconsistency of locum doctors now. Which to be fair is better than some Tasmanian communities that don’t even have that.
If we lost the NDIS, progression towards goals for our children would halt. Isolation would increase, and health would by extension most likely decrease. Not just for those that are NDIS participants, but also family members who are not participants would also decline through isolation and, by extension, suffer reduced health outcomes.
This would increase pressure on the state and federal governments via Medicare etc.
Also, it is of grave concern to hear that child will be funnelled into the “Thriving Kids” program, and that the NDIS would refuse applications if a person had not tried all treatments previously.
Looking at our family’s example, if ABA was the Thriving Kids of today, if we had refused ABA treatment we could have been refused NDIS participation.
At the time, ABA was considered the gold standard and now, decades later, we see that it has actually been harmful.
A couple of decades from now, meta-analysis peer reviewed research could show that Thriving Kids ended up being just as harmful as ABA is now considered. Yet you are looking at making legislation that would rob people of the autonomy to act according to the dictates of their own conscience. You are removing choice and control in both the participants that will be “lucky” enough to remain on the NDIS, and also those that might need to apply into the future.
Not everyone has the capacity to move interstate if the Tasmanian health system can not provide the treatments that you would mandate as being necessary to have exhausted all options before applying.
And, given the Tasmanian state budget released this month shows the state government are planning to remove 700 million dollars from the health system that is already crumbling around us, this will only compound the impacts of intergenerational cycles of poverty.
This legislation is already causing harm. People have been having their packages drastically reduced in the last 24 months or more. There is already a harm tracker recording harm and fatalities connected to these cuts so far.
Those numbers will increase exponentially.
If you create legislation that causes harm and fatalities, you are creating legislative eugenics.
Submission 1917
What happens in a couple of decades if there’s a class action against the government for making harmful therapy a prerequisite to NDS eligibility? Or for the lack of duty of care that led people to suicide, as happened with Robodebt?
I guess that’s where the earlier questions, of what constitutes improvement and what is the timeline for improvement, reappear as relevant.
As politicians, if you can’t answer publicly, you need to at least ask yourself internally, what is the true purpose of these changes to the NDIS?
Are they really to “safeguard” into the future, or to look tough short-term for votes?
Safeguarding the future shouldn’t remove choice and control.
Safeguarding doesn’t mean spending less now because you’ll be out of politics or dead before the children being pushed into Thriving Kids are old enough to take action against a program that, like ABA, showed short term improvement but resulted in long term harm.
I understand that the data from Dec 2021 showed 33% of NDIS participants had autism listed as their primary disability, so in an environment of wanting to reduce NDIS spending then it looks like a pretty cut and dry case to just chop them off NDIS and look like a hero for saving tax payers money.
The problem you face is that autistic people are still human beings. No matter how many spin doctors you get to demonise autistic people through propaganda, human rights are still human rights.
From any and all moral or logical viewpoints, it makes sense to invest in children while they are young so that when they are older they have more independence and capacity to work and “pay forward” through taxes. Investing through NDS at a federal level helps overcome the inequality between states. Allowing choice and control allows autonomy and dignity, and prevents the issues that stem from enforcing a strict regime of preapproved therapy that haven’t been tested for efficacy over sufficient time to ensure no harm befalls those forced into it by this legislation.
This submission hasn’t even yet had the chance to touch on the research from 2021 Per Capita “False Economy: The economic benefits of the National Disability Scheme and the consequences of Government cost-cutting” which is a 28 page report. Page 5 shows “a conservative estimate of the multiplier effect of the NDIS would be in the range of 2.25”. This report also outlines the harm faced if funding is removed: “We estimate that for every one billion dollars is under-funded significant negative outcomes occur across the economy.”
Submission 1917
“The consequences of under investing in the NDIS would be disproportionately born by women, carers and people living with a disability.”
This doesn’t mention the medical /quality of life implications and that we are seeing disabled people talking about accessing voluntary assisted dying if they lose funding.
This legislation will increase unemployment, both through removing supports needed for equitable access to the community so disabled people can work, and the people employed to support those people.
It will increase the demand on state services that are already unable to keep up, due to the need to replace supports that were provided through NDIS but are no longer allowed, as well as through deterioration of health through isolation and lack of choice and control, through being removed from NDIS, or forced into government mandated therapy, ie Thriving Kids.
Human rights should be equal. Access should be equal. Autonomy should be equal.
Unfortunately, the mentality of a capitalist society seems to breed the idea that a human’s worth is defined by productivity. Interesting how productivity seems to be used interchangeably to symbolise “effort”.
People with disability need to use more effort than neurotypicals to overcome barriers created by society, in order to try and be productive. However often these efforts used to “produce” go unseen, and as such are dismissed and go unacknowledged. (Or worse, are known about and met with apathy or judgement that they are somehow “less”.)
Therapy and supports - be they support workers or assistive technology - is what is needed for equitable access to community and employment.
To remove equitable access means that you reinforce the idea that disabled people have no productivity sufficient to determine their “worth”, ie they are “worth less” than those without a disability. That is what this legislation says.
This legislation is making decisions about which disabilities are “worth” helping.
It is saying that autistic people don’t deserve equitable access to community and employment.
Now, remember at the beginning when I said that autistic people had the highest unemployment rates compared to other types of disability and the general population?
Submission 1917
If you wanted to safeguard people into the future to be “productive” members of society that pay taxes, you would want to spend the most amount of money on the group that had the least employment. That’s the autistic community.
Removing autistic people from the NDIS means that you are perpetuating barriers that keep autistic people unemployed and underemployed, with an attitude that it will be somebody else’s problem down the track. Because the research shows that therapy that forces neuroconforming behaviour in childhood results in long term harm in adulthood. Which, by extension, will create a financial “burden” in the future to remedy.
Hitler used propaganda and power to kill millions of people, including the disabled. This legislation will kill countless people. Politicians hands aren’t clean just because they didn’t build a gas chamber and march people in. Allowing legislation that will see people end their own life by choice or from waiting for access to medical services, surgery, hospitals, mental health etc, knowing that those things will result means you will have have just as much blood on your hands to maintain the “status quo” for your rich donor mates.
While I would love to add all the academic references I have to show I’m not making things up, I simply don’t have the time as an autistic mother of autistic children trying to balance all the things required of me.
And the government knows this. It didn’t want to allow proper consultation or scrutiny. It has given a ridiculously short time for submissions to be sent in, and that is all part of the smoke and mirrors campaign or propaganda that’s happening here, that is designed to cause irrevocable damage to the lives of the disabled and those that care for them.
To be clear:
I was autistic before I was late diagnosed. I will still be autistic, even if they change criteria in DSM-VI and say that Autism level 1 and 2 are renamed with something else that isn’t deemed a disability or permanent, because the DSM isn’t about helping people or the truth, it is about money and insurance companies and the conflict of interest that arises there in.
Don’t go changing the definition of disability or permanent now.
Also as flawed as the current DSM-V is, it clearly states that the different “levels” or autism should NOT be used to create one size fits all “cookie cutter” supports, but rather that all supports should be conducted based on individual needs. Which the NDIS is clearly already in breach of.
Submission 1917
Using AI algorithms or templates of funding based on diagnosis is not in line with the current DSM-5.
My family and I voted Labour in the election that brought Labour back to power. But now, none of us will ever vote for Labour again. You have lost our trust, and the trust of the entire disabled community, with these proposed draconian changes. And unless this legislation is reversed, the damage Labour will do to the disabled community will also result in a major swing against you. Because let’s be honest, the only thing you truly care about is whether or not you retain power - that’s the only metric that you are considering in this entire legislation. And I hope to be proved right that this decision you have made will be your political undoing.
Sincerely,
A concerned Autistic mother of autistic children,
Tasmania