ACT for Autism

ACT for Autism ACT for Autism is an advocacy, consultancy and training service that works with families and professionals.

Additional services are provided locally to NDIS participants by a small team of therapists and support workers.

04/04/2026

Changes to the law have weakened appeal rights under the new system.

If your plan isn’t enough, it may be harder to get it fixed.

That’s not strong protection.

People with disability need real rights to challenge decisions and get fair outcomes.

Read more: https://everyaustraliancounts.com.au/new-framework-planning-what-we-know-so-far/

[Image description: Red textured background with a white panel. Warning icon at top. Text reads: “New Framework Planning: What We Know So Far. Harder to appeal unfair decisions.” Every Australian Counts logo at bottom.]

Mark Butler MP
Jenny McAllister
Senator Jordon Steele-John
Melissa McIntosh MP
NDIS National Disability Insurance Scheme

04/04/2026

Heading to the Perth Children's Hospital?

Our Hospital Support team are here to help!

From Monday to Friday, 9am – 4pm, our team is on-site at the hospital and ready to support you wherever you are on your journey.

If you’re waiting between appointments, have questions, or need guidance navigating the world of disability, you’re welcome to stop by the Kiind office during your visit.

Our team can offer families:

💜 Emotional support
💜 Emergency care packs
💜 Practical guidance on NDIS, carer and financial supports, education and more
💜 Accessible information resources
💜 Connection to other families

📍Find us on the Ground Floor in the Family Resource Centre.

For more information about our Hospital Support Program, please visit: https://bit.ly/46kgNCY

Thank you so much to Telethon7 Perth for supporting this program.

03/04/2026

Why Does the NDIS Feel So Hard—Even When the Need Is Obvious?

A friend asked me recently:

“Why is it so hard for families like yours to get support from the NDIS? Surely in your case it should be straightforward?”

And on the surface… yes.
It should be straightforward.

Severe autism. High daily needs. Safety concerns.
Not exactly a borderline case.

And yet, like many families, we’ve found ourselves deep in reports, applications and reviews—still somehow needing to prove that help would, in fact, be helpful.



It’s Not Actually Based on “Need”

Most people assume the system works like this:

More need → more support.

Simple. Logical. Almost suspiciously reasonable.

But the National Disability Insurance Agency doesn’t fund based on how hard things are or how obvious the need is. It funds based on whether something meets the legal definition of “reasonable and necessary.”

So instead of saying, “Here is our situation,” you’re effectively saying:

“Please find attached Exhibit A through K, cross-referenced against subsection 34(1)(a).”



You’re Not Just a Parent Anymore

Accessing support means gathering assessments, therapy reports, behaviour reports and specialist letters—ideally written in fluent NDIS.

They can cost thousands of dollars.

Which creates one of the more unusual features of the system:

you often need funding… to prove you deserve funding.

It’s a bit like being asked to submit architectural plans before being approved to build a tent. Every year.



The System Doesn’t Really Do “Obvious”

“Obvious” turns out not to be an accepted category.

Even when needs are significant and visible, everything still has to be documented, justified and carefully phrased—clear enough to be compelling, but not so urgent it starts to sound like your child should be removed from your care while you get taken away by the nice people in the white coats

Because decisions aren’t based on what seems clear. They’re based on what can be evidenced on paper.



Meanwhile, Everything Around It Is Thriving

There is no shortage of activity around the system.

Therapists, support workers, coordinators, plan managers, report writers—many of them excellent, and absolutely needed.

But it can sometimes feel like a lot of money is being spent… just not always in ways that make Tuesday afternoon easier.

There’s even something of a “report economy,” where thousands of dollars go toward explaining, in increasingly sophisticated language, that things are still quite hard.



The Gap No One Warns You About

There’s a quiet gap between real life and what the system can recognise.

Families live one. The system processes the other.

And somewhere in between, you find yourself translating:

“I haven’t slept properly in years”
into
“functional impairment across multiple domains.”



So Who Is Benefiting?

At some point, most families wonder where all the money is actually going.

There isn’t a single villain. It’s a system trying to create a market, control costs, ensure fairness and avoid being taken advantage of—all at once.

The result is something very structured, very careful… and often very hard to access.



The Reality for Families

What looks like support often feels like managing professionals, coordinating services, commissioning reports and persistently advocating—while still parenting a child with significant needs.

So yes, technically we have “support.”

It just comes with a side role as coordinator, administrator, researcher and part-time legal representative.



And Then—Plot Twist

Let’s say you succeed.

You gather the reports, learn the language, submit the evidence—and you get the funding.

Amazing. Life-changing. System working as intended.

Except… now you have to spend it.

Which sounds simple.

Until you realise it’s less “here’s some support” and more “welcome to your new part-time job in administrative gymnastics.”

Want to use a great therapist who isn’t NDIS registered?
No problem. Just become self-managed, learn some accounting, navigate the portal, upload invoices correctly and hope you haven’t breached a guideline that seems to have been written in interpretive dance.

And the funding itself isn’t just money—it’s very specifically categorised money.

So you might have funding for one thing, while the support you actually need sits just slightly outside it.

And suddenly you’re wondering:

Is this therapeutic?
Is this capacity building?
Is this… allowed?

Meanwhile, your child still needs the support. Immediately. Obviously.

So yes—getting funding is one battle.

But using it in a way that actually helps your child?

That’s the sequel.

And honestly… it might be worse.



Final Thought

The issue isn’t that families are asking for too much.

It’s that even when the need is obvious, the system requires you to prove it—carefully, repeatedly, and preferably in PDF form—before it responds.

And then, once it does, you need to become just qualified enough to use it correctly.

And that’s where things start to feel less like support…
and more like a process you have to get very, very good at.

More cheerful NDIA news (not)‘I did this to help and now I’m the one who’s going to need help’: NDIS call handlers descr...
23/02/2026

More cheerful NDIA news (not)

‘I did this to help and now I’m the one who’s going to need help’: NDIS call handlers describe pressure cooker workplace

Serco-run operation regularly fails because staff are not properly trained and pushed to meet call volume targets, a senior NDIA employee says

Community consultation begins. Deadline 15th March.
15/02/2026

Community consultation begins. Deadline 15th March.

Have your say. A draft of the National Guidance for best practice in inclusive education for autistic students is now available for community feedback. Consultation closes Sunday 15 March at 11:59pm AEST (QLD time).

Do you love kids? Looking for casual employment? A career change? Regular well paid hourly rates? Time off in school hol...
05/02/2026

Do you love kids? Looking for casual employment? A career change? Regular well paid hourly rates? Time off in school holidays?

We are recruiting to expand our support worker team and encourage applicants to complete the form below.

We are looking for big-hearted, service orientated individuals who love children and have a natural ability to engage them, and a conscious mindset to support others with a lack of judgement and an open mind. We match our staff carefully to our clients to ensure that our service quality remains individualised and our decision making is centred on how we can meet the holistic needs of our clients.

Maybe your special interest or skillset is exactly what might facilitate a young person's desire for acceptance, belonging and connection?

Are you someone who just always seemed to 'get' where those autistic kids were coming from? We want to hear from you!

We are an actively inclusive employer and many of our staff haved lived experience.

You will need to:

Prepare and upload:
1) an updated Resume/CV that includes two referees
2) a one page letter addressed to ACT for Autism Australia, specifying why you want to be interviewed for the role and why you think you are a good candidate.

Please do not use AI to assist your writing.

Please include your mobile phone number, email address, availability for work, suburb of residence, qualifications, any formal or informal experience supporting children, any formal or informal experience supporting autistic children.

https://forms.gle/yzyLDpYknizHyU5AA

18/01/2026
RIP Noah Johnston, 22yo.He died whilst his mother was in the ART process,  fighting his funding cuts.  His providers had...
18/01/2026

RIP Noah Johnston, 22yo.

He died whilst his mother was in the ART process, fighting his funding cuts. His providers had predicted he would die if the ndis didn't restore the overnight care he required from an appropriately trained individual.

They were right. His mother was right, and had pleaded for a very long time that 1:1 24/7 care was reasonable and necessary, as if his ventilator became faulty, or if the tube needed attention, he couldn't do it himself.

The ndia had paid for lawyers to argue for them. They had paid for an expert witness to 'assess' independently if Noah's mother, or his providers, were asking for supports that he didn't really need. The expert they appointed did not support the agency's view.

Here in Perth, we know so many people who have had to quit their jobs, try to hire lawyers, or watch their children regress due to the ndis and their funding decisions and cuts.

We recently supported a client through an ART process that took over a year. They were successful in getting their funding restored to the pre-cut level. This was a child who needed low intensity supports and they wanted funds for a weekly speech pathology session restored, amongst other minor changes. Based on common hourly rates, the ndia likely paid their lawyers more than 30x the $ value that the child's family were seeking be restored to their ndis plan for therapy.

This wasn't life or death and our love and thoughts are with Noah's family, and other ndis participants who have recently died or suffered disability related su***de who's experiences are not public knowledge.

The purpose of this post is to highlight a systemic incompetence that is both killing people, and spending tax payers money on actions that are damaging the economy by preventing parents from working and reducing job opportunities for much needed, well qualified individuals to provide therapy and critical care in the disability sector.

Most people can't relate to what it's like to live with profound disabilities - the chronic stress and the cycle of grief that comes with living a life that doesn't match the blueprint of the life you expected or wanted. But just imagine for a moment:

- if from tomorrow you needed another person to wipe your bottom and wash you, and every year you had to provide evidence of that need and there was a chance it could be taken away.
- if you are a parent, that you are told your adult child's personal hygiene needs will remain your responsibility.
- if you are a parent, and need surgery, but are told if you want surgery your child will have to suffer because they will only be cared for if they move into a house with 3 other disabled people, who are strangers, who they won't get along with, and might be at risk of ongoing sleep disturbances and fear from their unsafe or upsetting behaviours.

There are so many awful shocking stories at the moment. For many individuals the ndis is a world leading incredible government scheme that helps disabled people have a good quality of life. As Australians, we can be proud we have this system.

But when the ndis get it wrong, the consequences can kill, or cause life long suffering and trigger further damage to the health of people and their loved ones.

The government do not argue with doctors who make recommendations about the support we need through Medicare.

Parents and individuals do not seek external ndis reviews at the ART for fun. Many cases are dropped as an hour or two support from legal aid is not sufficient to build capacity to fight against government paid lawyers, often during one of the most personally stressful times of their lives when their capacity to fit another thing in to their lives may not be possible.

Over 80% of ART cases involving ndis decisions have an outcome in the applicant's favour. Noah's ruling was scheduled for March. Shame on anyone who earns money supporting funding cuts for human's ndis plans when they have no idea what that person actually needs for health, dignity, and a quality of life that most people take for granted.

RIP Noah.

(Photo source: disability advocacy)

13/01/2026

There is currently a Parliamentary Inquiry into the administration of the NDIS, and submissions are open.
This inquiry is not about whether the NDIS should exist.
It is about how it is being run, and the very real impacts this has on participants, families, carers, and providers.
If you have experienced: • Plan cuts or inadequate funding
• Repeated or unnecessary reviews
• Long delays during crisis
• Stress caused by new funding periods
• Poor communication or unclear decisions
• Burnout as a carer or worker
• Feeling unheard or powerless in the system
Your voice matters.
Submissions do not need to be long or formal.
They can be based on lived experience or professional experience, and they can be de identified.
Parliament only knows what is working and what is not if people tell them.
If you care about participant safety, dignity, choice and control, please consider making a submission.
This is one of the few opportunities to put what is happening on the public record and push for meaningful change.
If you are unsure how to write a submission, reach out to someone you trust in the sector, or simply speak honestly about what you have seen and experienced.
Let’s make sure the voices of participants and those who support them are heard.
🤍

https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/Public_Accounts_and_Audit/Inquiry_into_the_administration_of_the_National_Disability_Insurance_Scheme?fbclid=IwdGRjcAPTJEpjbGNrA9MkLWV4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHvIngYTCTMzli8pzE-MI2pEiQ9E6bDAVqlwmuUacZW-rflQZkdDEBEKYivWR_aem_IQjFwUIGTdK9nx7yjf8-Qw

We have so many clients impacted by the lack of knowledge and skills that are required to create inclusive environments....
22/11/2025

We have so many clients impacted by the lack of knowledge and skills that are required to create inclusive environments. Legislation and resourcing are critical, but understanding what inclusion actually is, and confronting our personal and professional belief systems and unconscious biases relating to disability are also necessary. We have also had so many clients who have been beautifully supported by outstanding individuals and schools with welcoming cultures. We have clients who have been excluded from their local community and segregated from their childhood friends because of a belief that 'they were better off elsewhere.' This deflection of accountability is at the heart of the narrative underpinning overt discrimination, that would not be acceptable for a moment if a different minority group were the focus.

https://www.health.wa.gov.au/Improving-WA-Health/WA-Virtual-Emergency-DepartmentFor the kids who struggle to transition ...
19/11/2025

https://www.health.wa.gov.au/Improving-WA-Health/WA-Virtual-Emergency-Department

For the kids who struggle to transition out of the house, or who need medical support but have experienced hospital based trauma.

Has anyone used this service?

The WA Virtual Emergency Department (WAVED) will enable residents of aged care facilities to be seen virtually in the comfort of their own home when safe and appropriate to do so, rather than waiting to be seen in an emergency department (ED).

Address

1/162 Grand Boulevard
Perth, WA
6027

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

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