ACT for Autism

09/08/2026

We like to avoid negativity in general at ACT for Autism Australia.

So here is a share of an incredible support from a parent for their autistic child.

This both warms our heart, and shines a light on how heavy hearted we feel about the NDIS' recent changes in behaviour and policy towards children.

We are seeing their suffering.

Client A - their communication software license ran out, and despite being a low cost Assistive tech price, and been funded for 10 years as it's used every day and critical.. the ndis insisted on it being funded as a 'replacement support' rather than reimbursing the self managed client. No problem... their SC put through the request the same day. 2 months ago. Still waiting, and now segregated as overwhelmed in the community without this human right.

Client B - co occurring DCD, EDS, and scoliosis. Needs to exercise, esp whilst going through puberty and to build muscle to prevent injury and poor health. Due to ASD 3:3 and associated communication needs, the client needs a support worker to be able to access the gross motor exercise that is safe for them. NDIS refuse to pay for the support worker to assist them at the gym, as the plan manager is 'right to refuse payment for gym membership and an every day expense.' The family spend 5 months proving again and again that they pay for the gym membership and all other every day expenses associated with their partially verbal daughter's time at the gym. The only support the ndis have been invoiced for is the support worker that is approved in the plan so they can exercise safely as any non disabled teen could do without a support worker... but as the support worker is employed by the gym the ndia won't believe the family aren't somehow trying to purchase a support that isn't allowed. Instead, they've changed the family to agency managed, said they would be paying triple for an exercise physiologist and now 90% of the young woman's supports have been removed as they were passionate small providers who can't afford to register so that agency managed participants can benefit from their expertise.

Client C - this single parent family of three children desperately needs to get a continence assessment and a FCA for one of their children who has grown out of prams and is too heavy for them to carry without damage to the parent's back... which is already in trouble.

However, the parent is terrified to contact the ndis about anything, fearing supports will be removed as her children are under 9 and they might be asked to reapply... the parent doesn't have the capacity to fight eligibility, despite it being very clear that at least 2 of the children will need life long support with self care. The 'thriving kids' program isn't offering any support for local families and the parent has no SC to help source a charity funded wheelchair, as the ndia say they have already been connected with local supports through the LAC. The NDIA also suggest that the oldest child (8yo) is an 'informal support' to the youngest child. The 8yo has a developmental age of 1.

Shared with consent. Does any politician care that this is happening?

We have done hundreds of pro bono advocacy this year, and wish to thank all the caring, but misinformed, employees of the NDIA who are providing information from the call centre that simply isn't true.

And for those less kind individuals, who perhaps asked our clients ndis reps 'have you considered working on your parenting?' When being contacted to help access supports for an intellectually disabled person with life threatening PICA, shame on you and your choice to remain ignorant.

Stay safe everyone!

https://www.facebook.com/share/r/1Ezc5uxo7H/

18/07/2026

Worth a watch - inclusion reminder-

We loved 'stop asking what my goals are' !

Unless you're a person who asks that question just as much to people without disabilities...
.. what division is created by accidentally through a lack of universal design in our policies and language frameworks?

Inclusion is about everyone thriving and having their needs met in a shared environment. That starts with attitude and belief systems creating unity.

Schools are an interesting focus point, as they are tasked with goal setting for all students. However, whilst racism, homophobia and sexism are commonly called out as appalling discriminatory views... the lack of awareness about able-ism means that it is, often unintentionally, systemic and very frequently occurring.

Parents and educators often will say 'this school couldn't meet their needs, it's great they've gone to 'other' school as they're really thriving.'

This statement could be truthfully applied to thousands of students, not forgetting the young people who can't access education au all due to a lack of inclusive schools.

But if someone believes 'x is better off at school' what they are supporting is the belief that 'x doesn't belong at this school'.

How many school leaders are comfortable saying 'X doesn't belong here'... whilst also writing business plans showing how they successfully address AITSL standards criteria about linking with community and effective teaching and learning?

It wouldn't be acceptable to say 'our data show that x is really making no progress in maths. We're not meeting x's needs, but we know this school down the road that have a great reputation for maths teaching, I'll see if i can get x a spot there'.

And if readers think, 'well, if x behaved differently, it would be ok'. And behaviour is the identified barrier, then who at the school has data to show they know how to teach behaviour? Education policy recognises schools are accountable for teaching preventative skills and behaviours to replace any behaviours of concern, so all people can feel safe at school.

Lots of 'evidence based practices' are referenced in policies, but they're only evidence based if implementation occurs as intended.. ie that behaviours of concern and barriers to learning are reduced, and adaptive, targeted new positive skills and behaviours are increased.

If you used an evidence based strategy to teach multiplication, and student x didn't learn multiplication, then the conclusion would be 'that strategy isn't effective to teach them that skill'. The data doesn't lie. Adults would change their behaviour and change the environment to try to teach multiplication. Adults would not say 'x should just learn multiplication because I said so' or 'x should be able to multiply because i used this strategy for these other students and it worked for them just fine.'

Reflections to have:

If you can persuade yourself that an environment you're responsible for doesn't meet a student's needs, and you're ok with that because someone else can... and your goal is to 'support' that child be sent elsewhere, do you think that's being inclusive?

You don't think 'x shouldn't come to my school' for diabetic students, or some wheel chair users perhaps... so what is your 'line' ? When is a student too visually impaired to get their needs met at the school their siblings attend? When are they too deaf? Too autistic? Too impacted by celebral palsy?

There is opportunity to challenge your own beliefs, strengthen your school's community of knowledge and lift outcomes for the most vulnerable... but it is uncomfortable because you don't know what you don't know, and opting into a journey where adults may feel deskilled is confronting and usually avoided... because people in power can avoid and create, often subconsciously, a convenient narrative to rationalise their actions, "we did everything we could" etc.

In regard to behaviour, knowing what data to collect is usually the first step, pre any analysis and pre any planning. An attitude where an adult is taking the behaviour of a child personally is an insurmountable barrier in itself.

It's an example of unconscious discrimination. If x needs an appendectomy, they are not turned away from an emergency department of a hospital because their disability related needs can't be met. X doesn't have to visit specific pharmacies to get their antibiotics.

Medical services are a mainstream public service, and so is education.

https://www.facebook.com/share/r/17rUr1yDWU/

10/06/2026

Some laws should not be rushed, if 'people will die' is not a good enough reason to pause this bill... what is?

https://www.facebook.com/share/r/17Tjvxvqxu/

10/06/2026

This app is full of really really good stuff for kids, teens and their families.

Whilst not specifically for the neurodivergent community, many of our clients who do not have intellectual disability have gotten a lot out of the mental health courses, and we have co-presented anxiety workshops with this company so that our attendees can practise the practical, well explained strategies. There's stuff in there for young kids that in our opinion, are far better than the mainstream 'zones of regulation' and other attempts to help kids increase self awareness.

They are running a deal now where you can sign up and get everything free, for a month,... everything! Full access! And no lock in, so you can cancel and not spend a cent.

It's def worth a look for any parent wanting their kid to have more tools, or to try something with their kid that's a bit different and isn't like trying to get them to 'therapy' to talk about stuff they don't like or can't talk about.

Your personal data will be used to process your order, support your experience throughout this website, and for other purposes described in our privacy policy.

31/05/2026

https://www.theguardian.com/australia-news/2026/may/31/ndis-funding-celebral-palsy-parents-of-six-year-old-ntwnfb

30/05/2026

For our Perth followers, please help if you can. Mt Claremont area.

https://www.facebook.com/share/p/1S3gFG36R8/

BREAKING: Police are desperately searching for a non-verbal boy missing since last night.
Read more: https://tinyurl.com/526ftp4w

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.

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