The Weight of Hope

If we read Dickinson, Wordsworth or Thomas, hope is this thing that glows. The little glimmers of light, luminous and exciting, signs in the everyday. It’s an exhale. But for some of us hope is heavy. Its fragility weighs upon a ragged blade.

Hope finds us in a beat, a word, a lyric, an imagining. But there is a reality for many of us where hope is an ache, an ache that feels audacious rather than desperate clinging to an idea of something better.

It doesn’t feel light. It doesn’t feel like knowing. It feels like bracing. This kind of internal recognition, noticing, okay, we’re doing this. It’s not soft and gentle. It’s not some sort of light affirmation. It’s almost like: for fuck’s sake, please be better.

We’ve run through the mill of expectation and daily demands, the constant battles, constant bureaucracy, constant frustrations. And at the end of it all, all you want is a step towards something better, something different, something easier. You’re not even asking for miracles. And when your hope exists in that space, it can still fall away and leave such anguish and heaviness in its aftermath.

Some people’s hope is: I hope it doesn’t rain today. That’s the last thing on your mind when you’ve got disabilities, when you’re caring for complex people, when you just get hit by one thing after another. When your specialist team starts growing beyond double figures. When you’re juggling seventeen specialist medical appointments around caring, trying to function.

How do you keep hope when you keep getting hammered?

Because hope is intertwined in everything. We hope to get a certain amount of things done in a day. We hope that this doctor’s going to listen. We hope that this test or scan is going to provide answers. And when we do have the answers, we hope that the next clinician or specialist we see is going to be helpful. We hope that when we help people, life things will change, turn around. We hope that when we help ourselves, the same things will happen.

When the day starts off well, we hope that we have the space to get things done, to make progress. If we try a new medication, we start with hope. We go to something and we go there with hope.

And that’s why it hurts so much when it falls. Not loses. Falls. Because we never chose to put it down. It just drops. And when it does, every time something doesn’t meet even just the slightest bit of that hopeful expectation, just a little bit, you crumble a bit more.

I applied for my foster care records with some level of hope that there would be answers. Instead I got a document that doesn’t really give me answers. Just shows me how badly the system operated. That’s what hope falling looks like. Not dramatic. Just another door that opens onto nothing.

I describe my life as a Demtel level shit magnet. When you get through one layer and something else goes wrong, or new layers are added, those little moments of hope get stripped away. The support worker that doesn’t show up and then you’ve got to pay for Ubers. The support worker that didn’t show up doesn’t pay the price. You do.

When I read the words of Thomas or Wordsworth, I can’t recall when my sense of hope became such a different concept to the hope described as luminous.

A few weeks ago my daughter asked me a simple question. How do you still have hope? At that moment I really wanted to say I feel the greatest sense of hopelessness I have ever felt. But instead I told her: I have to hope because without it I have nothing.

That same day a discussion with a friend going through something big noted with a sigh ‘It’s the hope, its the hope that breaks you’. And it does. it isn’t even about the expectation, its the need for it to just be something ‘else’.

More days than not lately, hope becomes more evasive. Not because my mindset is struggling. Not because my exhaustion is exhausted. But because the hope seems to lead to something that is getting harder to carry.

I have been writing every day since January 2025. Prolifically. Over the last month, I have barely written. Every morning I wake up and I think: I hope I can write. But the hope being stripped out from underneath me is the very reason why I’m not writing much at the moment.

When you start losing that hope, every day becomes like this deep dredge in the trenches just to function. Sometimes that’s in the recognition that the level of burnout you’re in simply can’t carry you forward anymore.

I know there are periods where I don’t feel this level of hopelessness. But I’m definitely struggling at the moment. And sometimes I just become scared of hope. Because we’re always hoping for better, hoping next time’s going to work out, hoping that good things will find us, hoping that we’ll have enough money to make it through the week, that nothing else is gonna hit the fan.

Perhaps sometimes the naivety that exists in order to hope is the last connection with our inner child. That hopefulness. And when it falls, not lost, not taken, just fails, it leaves such anguish and heaviness in its aftermath.

Hope fucking hurts. And I don’t think we talk about that enough.

I hope these tests give us the answers

I hope this Dr listens

I hope this person is reliable

I hope I can shower today

I hope I can do this small thing

I hope my body works today

I hope the pain is less today

I hope I can manage food today

I hope today I have enough peace to complete this task

I hope today isn’t another clusterfuck

I hope - I hope - I think many of us would like to go back to luminous hope

I was told it is possible my records don’t exist anymore or that I might have been an informal church foster situation. When I received the email with records today, they not only weren’t the records I had hoped for they were from my teens years.

What strikes me as interesting is rather than accepting I was being violently abused and living in an unsafe environment the police who had ripped my mothers hands from my neck and had to usher me away for my safety this particular evening. Decided that my school friends and my aunts (mother’s sisters) were all influencing me not to go home. If everyone around a young person is supporting them not to go home, surely you would ask why. “Punishing” my mother struck me as beyond offensive. If wanting a door way out of abuse is punishing ones parent, supported by everyone who knew what was happening.

I know what came after this particular report. Many of us do. I was lucky to not be a headline, repeatedly.

From what I can tell CPS hasn’t changed much over the years. Kids returned home, like I was in the early years and ignored later or seen as the problem. I have to contend with this memory today. It isn’t the record I was searching for or needed and its framing leaves a bad taste in my mouth alongside the grief and anguish of getting closer and further from answers.

The record - with redactions.

“X rang and requested advice as how to handle situation re xx, aged 13. CPS have been involved since yesterday evening. There was a family disturbance last night and xx's mother had been drinking heavily. Police feels she has definite drinking problem. Police arranged for xx to stay with a school friend last night. She attended school today.. Police had hoped to negotiate with xx and her mother. Mother seems ok this evening, but xx is refusing to go home. Police feel she is influenced by school friends to stay away from home and that xx is trying to "punish" mother. Also mother's sisters who are aged in 20's have been staying with mother (visiting from Holland). They have also been possibly encouraging xx to leave. Police feel PA is quite inappropriate. Feel mother's basic care is ok. Wanted AHS to investigate possibility of foster care. Agreed to make some enquiries.”

There is a burden of bureaucracy. Lost files. Years of searching. Waiting. Accessing it when you need it post burglary, accident etc. Endless barriers. Loss of hope and never knowing. Constant advocacy and weights we shouldn’t have to carry.

As children, we deserved better.

#FosterCare #Records #DFFH #CatholicCare #Melbourne #MissingPieces #FailingChildren #CareLeavers #CRLS

Somewhere in the past few years, POTS became a word people actually know. That’s not nothing. A decade ago, people were being told they were anxious, deconditioned, attention-seeking, or simply difficult. Now there’s a word, and the word has a Wikipedia page, and health journalists are writing about it, and that is unambiguously better than before.

But here’s the problem with a single legible label landing inside a complex system: the label starts doing work it was never designed to do. It becomes the diagnosis people are fighting to get, the condition people are explaining, the thing doctors are either dismissing or confirming. And in the process, it flattens something that is not flat.

POTS is one type of dysautonomia. It is not a synonym for dysautonomia. That distinction is not pedantic. It changes what’s happening in the body, what treatment makes sense, what makes symptoms worse, and why two people with the same diagnosis can present so differently that they barely recognise each other’s experience.

Start with the bigger thing

Dysautonomia means the autonomic nervous system is not regulating properly. The autonomic nervous system is the part of the nervous system that runs the body without your conscious input. Heart rate. Blood pressure. Temperature regulation. Sweating. Digestion. Bladder function. Pupil dilation. Breathing regulation.

It is, in other words, almost everything your body does to stay alive without you having to think about it.

When it stops working well, the effects are not local. They are systemic. They move through every body system that relies on automatic regulation, which is most of them. This is why dysautonomia does not look like one thing. It looks like a person whose body keeps failing to manage its own baseline, unpredictably, invisibly, in ways that don’t show up on a standard set of bloods or an ECG taken lying still on a table.

POTS sits inside this. So does neurocardiogenic syncope (vasovagal syncope). So does orthostatic hypotension, pure autonomic failure, multiple system atrophy, autoimmune autonomic neuropathies, and the growing body of post-viral autonomic disorders that COVID has forced medicine to take seriously. Every person with POTS has dysautonomia. Not everyone with dysautonomia has POTS. This is worth holding.

What is POTS?

The hallmark of POTS is specific and measurable: when moving from lying down to standing, heart rate increases by 30 beats per minute or more in adults (40 or more in adolescents), within ten minutes of standing, without a significant drop in blood pressure. That last part matters. The heart is racing, but blood pressure is not falling in the way it would with orthostatic hypotension. The compensation is happening. It’s just excessive, and it’s costly.

The symptoms that follow from this are what most people recognise: dizziness, palpitations, brain fog, fatigue, nausea, shakiness, heat intolerance, exercise intolerance, the feeling of being about to faint without actually fainting. Upright becomes dangerous. Gravity becomes the enemy.

That’s POTS as a category. But POTS as a lived condition is not one thing either. Researchers increasingly recognise it as several overlapping subtypes, and the subtypes matter because the underlying mechanism is different, and the mechanism shapes what helps and what doesn’t.

Neuropathic POTS

In neuropathic POTS, a partial autonomic nerve injury affects how blood vessels constrict, particularly in the legs and abdomen. When a person stands, blood pools downward. Less blood returns to the heart. The heart compensates by racing. The legs may go purple or red on standing. Feet can be cold. Sweating may be reduced in some areas.

This subtype is frequently seen alongside Ehlers-Danlos syndrome and hypermobility spectrum disorders conditions involving connective tissue that affects how blood vessels and veins behave.

Hyperadrenergic POTS

In hyperadrenergic POTS, the body releases excessive adrenaline when upright. Standing triggers a stress response that isn’t primarily about blood pooling it’s about an overactivated sympathetic nervous system flooding the body with norepinephrine. Heart rate rises. Blood pressure may actually increase rather than drop. There can be tremor, sweating, and an overwhelming sense of internal agitation that feels exactly like anxiety without the psychological component.

This is the subtype people are most often misdiagnosed with panic disorder. The body is producing the physiological signature of a panic attack. The person is not panicking. Those are different things and conflating them is harmful.

Hypovolemic POTS

Low circulating blood volume. The tank is not full. Symptoms improve with fluids and salt. Many people with POTS have some degree of hypovolemia regardless of subtype it’s a common secondary feature but for some people it’s the primary driver.

Secondary POTS

POTS caused by an underlying condition rather than as a primary diagnosis. Autoimmune disease. Diabetes. Viral illness. Concussion. Small fibre neuropathy. Connective tissue disorders. The autonomic dysfunction is real, but it’s downstream of something else, and treating only the POTS without addressing the underlying condition is, at best, incomplete.

Why the simplified version of POTS is not as helpful as it seems

The simplified version goes like this: POTS is a heart rate problem when you stand up. You need salt, fluids, compression, and gentle exercise. It’s manageable.

Some of that is true some of the time for some people. The problem is that it works well enough for a subset of presentations to become the standard script and then that script gets applied to everyone.

Interventions that help one subtype may be ineffective, poorly tolerated, or even worsen symptoms in another. For someone with post-viral POTS intersecting with an ME/CFS-like presentation, the “gentle exercise program” advice can trigger post-exertional malaise, which is not simply tiredness but a measurable immunological and physiological worsening following activity above the individual’s threshold. The script designed for hypovolemic neuropathic POTS is being handed to people with a different mechanism entirely.

Beyond the subtypes, there’s the question of what the POTS criteria are actually measuring. A heart rate rise of 30bpm on standing is a threshold, a line researchers drew to make the condition diagnosable. But dysautonomia does not exist only above that line. Someone can have severe temperature dysregulation, digestive dysmotility, abnormal sweating, blood pressure instability, and near-continuous orthostatic symptoms without meeting the heart rate criteria for POTS. They have dysautonomia. They do not have a POTS diagnosis. They often have no diagnosis at all, because the thing clinicians have learned to look for didn’t show up in the specific form they know how to name.

The POTS label did something important: it gave medicine and patients a shared language. But that language is now being used as if it describes the whole territory. It describes a portion of the territory. The rest remains largely unnamed in mainstream health content, and therefore largely invisible to the people living inside it.

Where the post-COVID research sits

COVID didn’t create post-viral dysautonomia. Viral illness has been a recognised trigger for autonomic dysfunction for decades. What COVID did was create enough cases simultaneously that medicine could no longer treat it as a rare edge condition and move on.

That distinction matters. COVID did not simply increase the number of people developing POTS. It exposed the limitations of a framework that was already struggling to explain post-viral illness. Long before SARS-CoV-2, people with ME/CFS, post-infectious syndromes, hypermobility disorders, and unexplained orthostatic intolerance were reporting symptoms suggestive of autonomic dysfunction. What changed was scale. COVID produced enough cases, in enough people, simultaneously, that autonomic dysfunction became harder to dismiss as a niche phenomenon affecting a small and unfortunate minority.

The research coming out of long COVID is pointing at overlapping mechanisms: immune dysregulation, autoantibodies, inflammation, small fibre neuropathy, blood volume problems, endothelial dysfunction, and sympathetic overactivation. Not one pathway. Several, interacting. The POTS label is appearing as one recognisable phenotype within long COVID one study of highly symptomatic patients estimated it at around 30% but POTS is not the whole of long COVID dysautonomia, and the research is increasingly clear on that. Orthostatic intolerance, inappropriate sinus tachycardia, blood pressure instability, gastroparesis, heat intolerance, and exercise intolerance are all appearing as part of the same autonomic picture without necessarily producing the specific heart rate signature that triggers a POTS diagnosis.

A 2025 population study of over 62,000 people confirmed a significant increase in POTS incidence following the pandemic, supporting what many clinicians already suspected: SARS-CoV-2 is triggering new-onset dysautonomia at scale. NIH’s RECOVER-AUTONOMIC trial is specifically evaluating interventions for long-COVID POTS, which tells you where the field has moved not “is this real?” but “how do we treat subgroups properly?”

That question, subgroups, is the one worth sitting with. Because the post-COVID research is doing something useful: it’s pushing medicine to look at the autonomic system as a whole rather than only at the heart rate criterion. It’s producing enough data, and enough sick people, that the inadequacy of the simple story is harder to sustain.

The simple story is not wrong. It’s partial. And partial, in a body that is this interconnected, is its own kind of problem.

#POTS #Dysautonomia #LongCovid #PostViralIllness #EDS

In May 2026, the NSW Department of Communities and Justice quietly opened expressions of interest for the Thriving Kids program, a $2 billion national investment in foundational supports for children under eight with developmental delay or autism. The procurement documents confirm that DCJ is seeking to contract not-for-profit organisations as a matter of explicit preference. Private providers may submit expressions of interest, but only “exceptional circumstances” would see them engaged.

This preference for NGOs might seem like progressive policy. It is, in fact, a high-risk gamble with the welfare of some of the most vulnerable children in New South Wales, and it repeats structural mistakes already documented at great cost across the NDIS.

Four Months to Launch a System That Took Years to Break

Expressions of interest opened in May 2026 and are expected to close 29 May. What follows is a Request for Tender, meaning the EOI is merely a filtering stage before the actual competitive process begins. After the RFT closes, DCJ must assess submissions, conduct due diligence, negotiate contracts, and notify unsuccessful applicants. Contracted organisations must then recruit and credential staff, establish referral networks, develop intake systems, build relationships with early childhood services, GPs, and schools across their catchment areas, and be ready to receive families.

The start date for all of this is 1 October 2026. Sixteen weeks from EOI opening to service delivery for children with autism and developmental delay.

This is not a tight timeline. It is an impossible one, and the government knows it. The October date exists not because it reflects what is operationally achievable, but because Thriving Kids must be in place before NDIS access rules change for this age group from January 2028. The deadline is political. The consequences are operational and they will land on families.

Staff who are not yet hired cannot be trained. Referral pathways that do not yet exist cannot direct families to appropriate services. Organisations that have just been awarded contracts cannot have the community relationships and practitioner capacity that good early intervention requires. The children who present in October and November 2026 will be the program’s test subjects, not its beneficiaries.

The advisory consultation process, a Foundational Supports for Children Advisory Group convened from July 2025 to February 2026, is worth noting here. That group included disability, early childhood, and allied health sector representatives, advocacy groups, and service providers. The organisations that will now compete for Thriving Kids contracts were, in many cases, the same organisations consulted about its design. The sector that stood to gain from the program’s architecture had input into that architecture. The communities it will serve had less.

Sixteen weeks is enough time to sign contracts. It is not enough time to build a program that works.

The Fiction of the Neutral NGO

The premise underlying the preference for NGOs is that non-profit organisations serve their communities rather than shareholders. That premise was reasonable in theory. Practice has eroded it almost completely.

The central problem is what academic literature calls partial representation: when an organisation claims to represent a community but shapes its service around institutional survival rather than community need. Peer-reviewed research identifies this pattern as common in autism advocacy, producing both symbolic and substantive harms. The organisation speaks for a community it no longer fully serves.

The pattern has a particular shape in the Australian autism sector. Some of the largest organisations operating under the banner of autism advocacy simultaneously hold roles as NDIS service providers, early childhood early intervention providers, behaviour support providers, support coordinators, and peak body-style information sources for the communities they claim to represent. A number of these organisations have published conflict of interest policies, which are, in themselves, institutional acknowledgements that the conflict exists. The policy does not resolve the conflict. It names it and continues.

This is not a flaw in any individual organisation’s governance. It is a structural consequence of what happens when advocacy organisations enter service markets. Once funding depends on volume of service delivery, the organisation’s survival becomes inseparable from the continuation of demand for its services. It cannot credibly advocate for systemic change that would reduce that demand, for better educational supports that reduce the need for specialist providers, for community integration that obviates the need for segregated programs. The organisation becomes a captured voice, speaking in the language of advocacy while operating on the logic of the market.

The conflict extends to research. Government-funded bodies that have produced policy-influencing research on autism interventions have, on occasion, included among their founding participants the very service providers whose interventions were under assessment. Undisclosed connections between researchers, board members, and commercial lobbying interests have emerged through public scrutiny after policy decisions were already made. Policy was shaped by research that was shaped by the service delivery interests of those who funded it. Autistic people and their families had no way of knowing this at the time.

The Structural Failure Record

DCJ is proposing to hand Thriving Kids to a sector the NDIS’s own independent review has identified as in crisis, conflicted, and in need of fundamental redesign.

The numbers are not ambiguous. Between July 2023 and June 2024, the NDIS Commission informed 187 registered providers they could no longer operate, and a further 124 that they could not deliver certain services. Banning orders increased 35 percent year on year. Complaints rose 78.2 percent and reportable incidents rose 47.3 percent in a single financial year.

These are not statistics generated by fringe operators. Among the most serious cases of financial distress in recent years have been some of the largest, most established not-for-profit disability providers in the country, organisations that had operated for decades and held government contracts at scale. A cluster of major Victorian providers managing former government-run group homes issued a joint public statement confirming that funding shortfalls were affecting their ability to continue services. Almost sixty supported independent living homes had already closed. The sector held, on average, only a month’s cash in reserve. Three years of consecutive deficits. These organisations were not closing because they were badly managed. They were closing because the structural economics of government-contracted disability service delivery do not work, and the pricing has never matched the actual cost of care.

Thriving Kids will face the same structural pressures. Contracting NGOs to deliver it does not change the economics. It simply ensures that when the economics fail, it is the NGO and the children relying on it that bear the consequences.

The LAC Precedent

Local Area Coordination is the most direct template for what Thriving Kids could become. LACs are delivered by NGOs contracted as NDIS partners, designed to support people with disability to navigate the scheme, connect with community, and build capacity. The 2023 independent NDIS Review found the model has largely not delivered on this design. Due to high caseloads, LACs are unable to provide the level of support intended.

The review’s proposed solution, replacing LAC entirely with a new Navigator function, came with a specific requirement: Navigators must be independent from other service delivery. The review’s architects had seen empirically what happens when the navigation role is held by organisations that also deliver services. The incentive to manage participants toward the organisation’s own offerings cannot be fully eliminated through disclosure alone.

There is a direct record from the ground. A former LAC employed by a large NGO in southern NSW, who resigned after one year, documented her experience in a public submission to the Productivity Commission. She described finding herself repeatedly advocating for participants against the interests of her own management, facing repercussions for doing so, and witnessing daily the gap between what LACs are supposed to do and what they are positioned to deliver. Her submission entered the public record in 2017. The structural problems she identified have not been resolved. The 2023 independent review recommended replacing the entire model.

DCJ is now designing a program that will involve early intervention, allied health, family supports, peer mentoring, and parent training, a suite of services that will inevitably attract the same organisations already embedded in the NDIS ecosystem. Those organisations will have a financial interest in identifying children as requiring their services. This is not a hypothetical risk. It is the LAC model, reproduced.

The Support Coordination Precedent: The Government Already Knows This Fails

The most damning evidence against the Thriving Kids NGO model is that the federal government has already drawn its own conclusions about what happens when the same organisation holds navigation and service delivery functions simultaneously and has legislated to end it.

Support Coordination is currently delivered, in many cases, by organisations that also provide the direct services to which they are coordinating referrals. The conflict is structurally identical to what Thriving Kids is about to create. An organisation that holds both roles has a financial incentive to coordinate participants toward its own services, to overstate need to justify continued funding, and to avoid identifying when a participant would be better served elsewhere.

The NDIS independent review identified this as a systemic failure. The government’s response, the “Securing the NDIS for Future Generations” reform package, commits to a newly commissioned support coordination function beginning 1 July 2028, specifically structured around independence from service delivery. The incoming Navigator model requires providers to be fully independent from service delivery, with no financial relationship to the services to which they refer participants.

This is the government formally acknowledging what autistic communities have argued for years: you cannot hold the navigation function and the service delivery function in the same organisation and expect participant interests to prevail. The conflict is not a governance problem. It is a structural one.

Now consider what DCJ is designing into Thriving Kids from the start. The program will deliver early intervention, allied health, family supports, peer mentoring, and parent training through contracted NGOs, many of whom also hold NDIS Support Coordination contracts for families in the same communities. The rollout date of October 2026 predates the new independence requirements by nearly two years. There is no independence requirement in the Thriving Kids procurement documentation.

Support Coordination rates at the standard and specialist levels have been frozen since 2019 to 2020, six consecutive years without an increase. Providers have absorbed those losses through volume and scope creep. Thriving Kids will operate under the same pressures, with the same organisations.

The government’s right hand is reforming the NDIS to eliminate dual-role conflicts. Its left hand is contracting them into existence in a new program targeting the same population. DCJ has chosen to replicate the record, not learn from it.

The Evidence Problem

The Thriving Kids program includes peer mentoring and parent training as service modalities, presented in policy discourse as evidence-based. That evidence base is thinner than the program design acknowledges, and under the structural conditions described above, even genuine evidence degrades in delivery.

Research on peer mentoring for autism is almost entirely concentrated in university settings with autistic adults. A systematic review found nine programs evaluated in eleven peer-reviewed articles reporting positive outcomes, but the evidence was primarily qualitative and the population was adults in tertiary education. Thriving Kids serves children under eight. There is no sound empirical basis for that extrapolation, and the program design makes it without acknowledgment.

Parent training evidence is similarly constrained. A systematic review and meta-analysis found small to moderate treatment effects for some parent-mediated interventions, with results difficult to interpret due to varied outcome measures and session components across studies. Fidelity data, meaning whether parents are actually implementing techniques correctly, is rarely reported. Parent training can work under well-resourced, well-supervised conditions. Those conditions will not exist at scale, in a sector under financial stress, contracted through a sixteen-week procurement process, delivered by organisations with a financial interest in continued family engagement.

The evidence question and the structural question are not separate. They converge: even interventions with a genuine evidence base will fail if the organisations delivering them are conflicted, underfunded, and operationally unprepared.

Who Could Actually Deliver This, and Can Anyone Know If They Are Viable?

Ask which NSW NGOs could deliver Thriving Kids without structural conflicts of interest and two problems appear simultaneously: the answer is very few, and the information needed to assess financial viability is largely unavailable to the public until it is too late to matter.

The independence standard the government is building into the future Navigator model, fully separate from service delivery, nationally governed, independently funded, describes almost no existing NGO in the NSW disability sector. Organisations with the infrastructure, community reach, and staffing capacity to deliver a complex early intervention program at scale are, without exception, already embedded in the NDIS market. They hold provider registrations, deliver funded services, employ allied health clinicians billing under NDIS rates, and in many cases hold Support Coordination contracts for the same families whose children may present to Thriving Kids.

The organisations that have preserved genuine independence from that market are characteristically small, autistic-led, peer-support focused, and entirely unprepared for government service commissioning at this scale, not because they lack capability, but because they made deliberate choices not to enter the market that would have compromised them.

DCJ’s procurement process does not require applicants to declare their NDIS provider registration status, their proportion of revenue from NDIS service delivery, or their existing service relationships with families in communities they propose to serve. Independence is not assessed. It may not even be considered a relevant criterion.

On financial viability, the public has one instrument: the ACNC Charity Register. Medium and large charities must submit annual financial reports, publicly available. What those reports contain is a historical snapshot, typically six months to a year old, prepared under standards that do not require disclosure of the information most relevant to program risk. Cash reserves as a proportion of operating costs, pricing assumptions built into service delivery models, wage commitments relative to contracted rates: none of this is required. The ACNC’s own guidance makes clear that economic dependency disclosures are best practice recommendations, not enforceable requirements.

The regulator is also structurally constrained. The ACNC Act limits what the Commission can say publicly about a charity’s financial position. An organisation in genuine distress can remain listed as registered and compliant while internally approaching insolvency. The cluster of major Victorian providers that moved into crisis absorbed three years of deficits before any public statement was made. None of it was visible on the ACNC register until annual reports were filed and the crisis was already breaking.

Thriving Kids will launch with providers whose financial stability has been assessed confidentially, with no public disclosure, no independent monitoring of cash reserves during the contract period, and no early warning mechanism for families whose children are enrolled when a provider begins to fail. The children most dependent on continuity, autistic children under eight for whom disruption to early intervention carries real developmental cost, will have the least protection when familiar economics meet a new program in an impossible timeline.

The Displacement of Independent Voice

The final harm of the NGO preference is what it does to the community’s capacity to speak.

When autism organisations, peak bodies, and community groups receive government funding to deliver services, they become financially dependent on the continuation of that funding. That dependence shapes what they say publicly, what they submit in consultations, and whose interests they can represent without institutional risk. Organisations contracted to deliver Thriving Kids cannot credibly critique its design, its adequacy, or its impacts. They become, structurally, an extension of government policy rather than a check on it.

Australia already has an autism advocacy landscape in which the loudest institutional voices are substantially controlled by service providers whose interests diverge significantly from those of autistic people and their families. Thriving Kids will not add capacity to that landscape. It will further capture the organisations supposed to speak for it.

Which brings us to the question the government has not answered: if not the existing NGO sector, conflicted, undercapitalised, operationally unprepared, and soon to be further captured, then what? The independent sector capable of delivering this program without structural compromise does not exist at scale, was not built, and cannot be conjured in sixteen weeks. That is not an argument for abandoning early intervention. It is an argument for honesty about what this program actually is.

Thriving Kids, as currently designed, is not a solution. It is a deadline dressed as one. The risk has been transferred from government to sector, from sector to families, from families to children who have no say in any of it. And when the first providers begin to struggle, as the economics dictate they will, the children bearing the cost will be the same children the program was announced to protect.

That is not a prediction. It is a pattern. We have watched it happen before. We are building the conditions to watch it happen again.

#ThrivingKids #NGO #NDIS #Autism #AustralianDisability #ConflictOfInterest #NSW

I’ve spent the last several months doing something that shouldn’t be as hard as it is: finding appropriate organisations to hand my clients over to as I transition out of my role in case management and support coordination.

I started with a list of approximately 50 providers.

After months of deep-diving websites and social media, that list became 8.

Not because of funding constraints or geographic limitations. Because of inaccessibility. Across the board, relentless and largely unremarked upon.

Here’s what I found:

Social media presences built on high-colour, high-stimulation content with no image descriptions. Generic, impersonal responses in the comments to people who were asking real questions about real support needs or no responses at all.

Follow-up emails that took more than four days. Calls that were never returned. Referral forms embedded in websites that demanded upwards of twenty minutes of a person’s time and expected them to supply plan documentation before any meet-and-greet had occurred.

Service agreements sent without prior conversation.

Services that would not accept clients holding fewer than 25 hours of funding.

And underlying all of it: the same failure, expressed in a dozen different ways. A failure of genuine commitment to the people this industry exists to serve.

Last year I read that 80 percent of NDIS web content fails WCAG accessibility standards. Eighty percent. That figure sat with me then, and it sits with me differently now — not as a statistic but as a lived experience I can put names and faces to.

WCAG compliance is not a technical nicety. It’s a baseline. It’s the floor, not the ceiling. And 80 percent of providers in this space haven’t reached it.

The inaccessibility isn’t incidental. It tells you something about the organisation’s relationship to disability whether it’s a compliance exercise or something that has been genuinely integrated into how they operate, communicate and make decisions. A website that fails basic accessibility standards is a signal. Slow or absent communication is a signal. A referral form designed for administrative convenience rather than the person completing it is a signal.

When I began this process I had 50 providers I considered worth investigating. I ended with 8 that I would feel confident recommending to a client, 8 that demonstrated, through their actual presence and conduct, some real alignment between what they say they offer and how they behave before anyone has signed anything.

That gap matters. Not abstractly to specific people, navigating systems that are already demanding, trying to make decisions about their own support while contending with organisations that cannot return a call.

Consider what it looks like from the other side. A person perhaps fatigued, perhaps in pain, perhaps with a cognitive load already at capacity, opens a browser and starts searching. They land on a website that assaults them with colour and movement and no clear path through. They try Facebook, find a page, and ask a question in the comments. A week passes. They try a phone number. It rings out. They find a referral form and begin filling it out, not knowing it will take half an hour and ask for documentation they don’t have to hand. They close the tab. They start again somewhere else. This is not a hypothetical. This is Everyday.

The sector will continue to talk about person-centred practice and inclusion. Some of them will mean it.

The 8 do.

This frustration is one things I will not miss as I leave my role.

#disability #WACG #DisabilityProviders #NDIS

Before my daughter said a word. Before she filled in a single form. Before she tried to explain that she couldn’t breathe properly, the waiting room already had her sorted.

She was away on a respite stay when she injured herself and needed to go to an urgent care clinic. New patient, out of her local area, unfamiliar faces. She walked in trying to manage her breathing and tried to explain what was happening at the counter. She was met with the particular kind of unhurried attention that isn’t really attention at all.

Then someone else walked in. Different injury, simpler presentation, louder about it. Watched straight through.

My daughter filled in her paperwork and handed it to the same receptionist who proceeded to sort less urgent patients whilst pressing for clarification, clarification of the box she’d ticked for ethnicity and disability. Said she could only pick one. Kept pressing. Wanting more. Wanting to know more about her cultural background.

My daughter was trying to breathe. And someone was interrogating her identity.

The thing about microaggressions, I hate that term, because there is nothing micro about them. Not when they have been happening your entire life. Not when your nervous system is already on alert before you walk into a room because you have learned, through repetition, that this is what happens. Not when the sum of them is a lifetime of being made to feel like an explanation.

My daughter has mixed heritage. She has wild curly hair and brown skin and a white mother. And everywhere she goes, people are trying to work out where she comes from. The questions. The tilted head. The follow-up. The need to place her, categorise her, file her somewhere that makes sense to whoever is asking.

It happens in cafes. It happens in schools. It happens in medical settings and that last one matters enormously, because medical settings are already places where she has to fight to be believed, fight to be heard, fight to have the complexity of her conditions taken seriously. Adding this layer to that is not a small thing. It is a barrier to care. It is harm.

She didn’t clock all of it in the moment. She was managing her body, managing her breathing, trying to be a patient. It wasn’t until she got home and started describing the experience that we both knew. We both recognised it immediately. Because we have a lifetime of recognising it.

Her support worker, who had been standing right there, said: “are you sure it was racist?”

I understand why. When you haven’t lived it, you’re looking for something obvious. A slur. An outright refusal. Not the questions. Not the slower service. Not the eye contact that goes to someone else. Not the form that suddenly needs more boxes ticked. These things are easy to miss when you’re not the one they’re aimed at.

That support worker has been with us for three years. We have told her, in words, that this happens. But there is a difference between being told something and watching it and finally tracking what the accumulation of it costs.

There is the other layer. There always is.

My daughter has classical Ehlers-Danlos Syndrome and dysautonomia not straightforward POTS, something more complex, where her autonomic system behaves differently than the textbook and her connective tissue instability is significant and body-wide.

When people in medical settings have heard of EDS, they’re looking for bendy. When they’ve heard of POTS, they’re looking for dizzy. These are not wrong, exactly but they are incomplete in ways that are genuinely dangerous when the patient in front of you doesn’t fit the simplified version.

At this clinic, my daughter had to correct the doctor’s initial read. Had to say: actually, I have classical EDS, and it behaves differently. My autonomic system is complex. My connective tissue involvement is total. The doctor, who happened to have a background in physical health, examined her. Felt the level of instability. And said, visibly shifted: “This is serious levels of EDS.”

Yes. It is. It has always been.

The Doctor mentioned rheumatology. My daughter said she was on the waitlists. Had seen them. Had to keep educating. The doctor said, genuinely seeming to not quite believe it: “Is it that difficult?”

This is not a criticism of that doctor. In the end, she was one of the rare exceptions; she examined, she listened, she validated, she referred with care. That matters and I’m not dismissing it.

But I want to sit with that question for a moment. “Is it that difficult?” After a physical exam that revealed significant instability. After my daughter explained years of waitlists and appointments where she has had to advocate for herself to people who should already know.

Yes. It is really that difficult. And the reason it doesn’t look that bad from the outside is partly because my daughter has had to become an expert in her own conditions just to survive the medical system. She arrives prepared. She corrects. She explains. She advocates. And then people are surprised by the gap between how capable she seems and how much she is actually managing.

Here is what I keep thinking about.

We were told by the support worker after the fact, when we unpacked what had happened, that she hadn’t realised. Hadn’t caught it. I believe her completely. But what I want people in caring roles to understand is this: not catching it has a cost. The cost is not paid by the person who missed it. It is paid by the person it was aimed at.

Racism in medical settings, including the quiet kind, the paperwork kind, the extra-questions variety, does not need to announce itself to do damage. It shifts things. It changes what happens before you see the doctor. It affects how you’re received, how seriously you’re taken, how much energy you burn just getting to the point where someone actually looks at you. And for someone whose body is already working overtime, that energy is not spare.

When we ask that cultural considerations be integrated into someone’s care and the response is that it’s not really an issue, that is also a cost. Paid by the person it’s about.

My daughter did not win a prize for ticking those boxes. She never does. What she gets, instead, is more questions. A different quality of attention. Another layer of having to prove something before anyone will look at what she actually came in for.

She knows this. She has always known this. Her nervous system knew it before she walked through the door.

We are still catching up.

#Racism #Multiracial #Biracial #BarriersInHealthcare #Microaggressions #MedicalTrauma #EDS #POTS #Dysautonomia

This is not panic. This is stabilisation planning.
Because waiting for clarity is not a strategy.

My last post covers what we know, what we don’t, and who is most exposed. This post covers what to do about it.

There is a difference between catastrophising and accurate risk assessment.

Accurate risk assessment looks at the direction of travel, identifies where you are most exposed, and builds structures that can hold, ideally before the ground shifts, not after it does.

That is what this post is for.

If you are an NDIS participant with a complex plan, a parent navigating an autistic child’s supports, a carer whose daily structure depends on existing funding, or a professional supporting people in any of those positions this is the practical framework.

Stabilisation is the bridge between the system people have and the system they may be about to lose.
It is what keeps things from collapsing in the gap.

The Core Principle

What we are building is not fake independence. We are not trying to manufacture the appearance of functioning that doesn’t exist.

We are building repeatable function under stress.
Not on a good day. On a hard one.

What does this person or family need in order to hold their basic functioning when one part of the system moves? That is the question underneath all of it.

Because in a system that is in active reform, some things will move. The goal is to reduce the number of things that collapse when they do.

What Every At-Risk Participant or Family Needs to Build

A Plain-Language Plan Breakdown

Most NDIS participants and many of their support workers do not have a clear, accessible summary of what their plan actually funds.

This matters because in times of plan change, review, or appeal, you need to be able to speak clearly and quickly about what your plan contains, what it is used for, and why each element is necessary.

Build a one-page summary that includes:
What your total funding is across each category: Core, Capacity Building, Capital.
What each category is currently being used for.
Which providers are delivering which supports.
What the stated goals are and how current supports connect to them.
Any supports that are self-managed or plan-managed versus agency-managed.

This is not the plan document. This is your working map. It should be accessible to everyone in the care circle, the participant themselves, the main carer, the support coordinator if there is one, and key providers.

If you cannot explain your plan clearly in a ten-minute conversation, you are not positioned well for a review.
you won’t be able to defend it under pressure.

A Provider Map

Who is currently providing support? What does each provider deliver? What is the relationship with each provider, formal, informal, trusted, functional-but-not-preferred?

Map it out:
Provider name and type. What they deliver and how often. Whether they are registered or unregistered. Whether they are replaceable in your area if they exit the market or registration changes make them ineligible. How long the relationship has been in place.

The provider map also tells you where you are most vulnerable. If you are heavily reliant on a small number of providers, particularly unregistered providers in areas with thin markets, that is a risk to know now, not during a crisis.
Because replacement is rarely immediate, and sometimes not possible.

A Risk Map

Where are the points of fragility? Be specific.

Common fragility points include:
Support coordination, if removed, who holds the coordination function? Specific providers who hold significant trust and relationship capital and who are not easily replaced. Informal supports, family, carers, who are at or near capacity. Any part of the plan that has not been reviewed for a long time and may be difficult to justify under current evidence standards. Young people approaching age transitions especially 7, 9, 18, 25 where plan category changes are common. Families or participants in areas with limited alternative provider options.

This is not a list of things to catastrophise about. It is a list of things to have contingency thinking around before you need it.
Knowing this doesn’t create the risk. It makes it visible.

A Strengths and Barriers Map

Functional capacity assessments, which is the direction the scheme is moving, looks at what a person can and cannot do. It is important that you go into any assessment or review with a clear picture of both.

Strengths: what can this person do, and under what conditions? What does functioning look like on a good day?
Barriers: what prevents functioning when it fails? What does functioning look like on a hard day, in a hard week, during a health episode, or during a sensory or emotional overload? What is the gap between best-case functioning and realistic daily functioning?

This gap is often where the system fails to see accurately. Assessment at a single point in time, in a structured environment, often captures the ceiling rather than the floor or the average on an unusually supported day. Your job is to document the real range, with evidence.

An Evidence Folder

Evidence that was sufficient under previous review standards may not be sufficient now. Build your evidence folder before you need it.

This includes:
Current reports from all treating professionals, occupational therapists, psychologists, speech pathologists, paediatricians, psychiatrists, GPs. Reports that clearly connect diagnosis and presentation to functional impact, not just what the diagnosis is, but what it means for this person’s daily life. Any functional assessments that have been completed. School reports that speak to functioning, support needs, and the gap between supported and unsupported performance. Carer impact statements, written accounts from the people providing informal support, describing what the daily reality looks like. A personal statement from the participant if they are able to contribute one.

The most important thing in an evidence folder is specificity. Vague clinical language does not hold under scrutiny. “Requires significant support for daily living” is weaker than “cannot initiate, plan, or complete personal care tasks without one-to-one verbal and physical prompting across all steps of the task.”
Because vague language is easy to dismiss.

A Medication Management Plan

For participants whose functioning depends significantly on medication, psychotropic medication, medication for ADHD, medication managing pain or physical health conditions, the plan for medication management should be explicit and documented.

Who prescribes? Who monitors? What happens if that provider becomes unavailable? What are the signs that medication is not holding, and who responds?

This is relevant to NDIS planning because unstable medication management creates functional instability that then creates escalating support needs. It is also relevant to crisis planning, which is its own post, but it belongs in your stabilisation framework now.

A Carer Support Map

What is the current state of the informal support system, the family members, partners, parents, and carers who are providing support outside what is formally funded?

Be honest:
How many hours per week are informal carers providing support? What is their current capacity, are they at sustainable load, stretched, or beyond stretched? What happens to the participant’s functioning if the primary carer is unavailable for a day? A week? What does the carer need in order to maintain their own functioning?

If informal carers are already at or beyond capacity, and formal supports are reduced, the system does not self-correct. The carer absorbs the gap until they can’t, and then something breaks.
And it’s rarely the system that absorbs that break.

Naming this clearly, in writing, before a review, is protective. It documents the reality that the plan is holding and what happens when it holds less.

An 8-Week Stabilisation Cycle

Think about functioning in cycles rather than as a static state.
Most people don’t collapse in a day. They unravel over time.

What does an 8-week period need to contain in order for this person or family to hold their baseline functioning?

Map it out:
Regular appointments and how often they need to occur.
Support hours and what they need to cover.
Carer respite or breaks.
Anything that, if missed for 8 weeks, leads to functional deterioration.

This cycle becomes your minimum viable structure.

It is what you are trying to protect if supports are reduced.

If your current structure cannot be maintained under a reduced plan, the 8-week cycle makes that visible, with specifics, before a review, rather than in its aftermath.

For Professionals and Care Teams

If you are working in this space, as a support coordinator, allied health professional, behaviour support practitioner, or any other professional role, the preparation looks somewhat different but is equally urgent.

Your reporting needs to get more specific. Vague functional language is going to erode under tighter scrutiny. Reports that say “benefits from support” are less defensible than reports that say “without prompting support across all four steps of task initiation, this person does not begin personal care tasks on 4 out of 5 mornings.” The bar for evidence is rising. Write to it now.
Because rewriting reports later, under pressure, is much harder.

Your clients’ evidence folders need to be current. If you haven’t seen certain clients for more than 12 months, their reports may already be considered outdated in a review. Flag this and make it a priority.

Talk to your clients and families about what is coming. Not to alarm them, to help them prepare. Families who understand the direction of travel and who have done the preparation are in a much better position than those who are surprised by a review letter. Your professional knowledge of the system is a resource. Use it proactively.

Map your own service capacity. If a significant number of your clients face plan reductions simultaneously, your practice is also affected. What is your capacity to support clients through reviews and appeals? What would you need in order to hold that function?

Name the redistribution clearly in your clinical and support work. When informal carers are absorbing what formal systems are not providing, document it. When a parent is providing 40 hours of support per week and not calling it “caring” because it is just called “parenting,” name what is actually happening and what it costs.

A Note on What Stabilisation Is Not

Stabilisation is not compliance.

It is not accepting reduced supports without advocating clearly for what is needed. It is not making peace with a system that is moving in a harmful direction without saying so.

Stabilisation is the practical work of making sure that while you are fighting, at a review, in an appeal, in a complaint, in the longer political conversation, the daily life of the person you are caring for or working with does not collapse around you.

It is the work of buying yourself enough time and enough stability to do the other work.
It’s the difference between holding things together and trying to rebuild them after they’ve already fallen apart.

If Things Are Already Escalating

For some families and participants, this is not forward planning. The reviews are already happening. The supports are already reduced. The functioning is already unstable.

If that is where you are, the most important things are:
Then this is not theory. This is triage.

Document everything. Every communication about your plan. Every phone call, with date, time, and what was said. Every reduction in an approval letter. Every impact on functioning. This is your evidence base for any review or appeal, and it needs to exist before you can use it.

Know your review rights. You have the right to request a plan reassessment, to seek an internal review of an NDIS decision, and to apply to the AAT, the Administrative Appeals Tribunal, if the internal review does not go your way. Support coordinators, advocacy organisations, and legal aid services can help you understand your options. If you receive a reassessment letter, you have 90 days to respond, and this is extendable. (Note ART is also changing so this is a short term option)

Don’t wait. Review timelines are long. If you are considering an appeal or reassessment, start the process now, not when you’ve run out of funded supports.

Reach out to advocacy. Disability advocacy organisations exist specifically to help people navigate this. They can help with reviews, appeals, communication with the NDIA, and understanding your rights. They are a legitimate part of the ecosystem, use them.

The Uncomfortable Truth

We also need to be realistic about what is coming.

If access to consistent, adequate supports reduces, as the reforms intend, pressure on families, on carers, on informal networks, and on crisis systems will increase. This is not a prediction of doom. It is a description of capacity.
And capacity has limits.

Families who are already stretched will stretch further. Mental health systems that are already overwhelmed will face more referrals. Emergency presentations that might have been prevented by adequate community support will happen because adequate community support is no longer there.

We are not building for a future we want. We are stabilising for a future that is already arriving.

If we don’t plan for what is coming, we leave families making high-stakes decisions in the worst possible moments, without the map, without the evidence, without the knowledge of their rights, and without the support structures that might have held them.

That is what this post is for.

Fore-armed is fore-warned develop a guide of all the potential community, mainstream and disability support available in the Local area’s for each person.

The Summary, Simply

Build these things now, before you need them:

A clear plan breakdown everyone in the circle understands.
A provider map that shows where you’re exposed.
A risk map that names your fragility points honestly.
Strengths and barriers documented, not just in your head.
An evidence folder that is current and specific.
A medication management plan.
A carer capacity map that names what informal support is actually providing.
A free and low-cost support list that fills gaps.
A provider continuity plan if you use unregistered providers.
An 8-week stabilisation cycle that defines your minimum viable structure.

None of this is bureaucratic busywork.
It is survival infrastructure.

The system will do what it does. What we build around it is still within our control.
And that control matters more than it used to.

I have developed a an 8 week support template, specific to SC’s however it can be used across all disciplines. If you are interested in the downloadable resource feel free to comment or DM and I will send it to you.

#Stablisation #NDIS #PlanningForChange #NDIA #NDISReform #DisabilityAustralia #Autism #PsychosocialDisability #Budget2026 #BePrepared #PWD #PolicyReform #CapacityBuilding

Unfortunately, there’s a lot of noise about these changes. And the reality is, the noise won’t change much if anything.

It’s time to be pragmatic.

To stop waiting for clarity and start noticing what is already taking shape.

Because in 12 months, what we thought would be a staggered rollout will likely be framed very differently. It will be positioned as a success. Budgets reined in. Systems tightened.

And very little will be said about the impact on the people whose lives were reduced to numbers on a balance sheet.

What We Know, What We Don’t, and What the Signals Are Already Telling Us

A post for anyone navigating the NDIS right now, participants, families, carers, and the professionals working alongside them.

We’re past speculation.

The direction is clear, the legislation is moving, and the on-the-ground signals for those of us working in and around this system are already loud enough to take seriously. What isn’t clear and what the government has not been transparent about is the texture of what’s coming: who it will actually hit, how quickly, and what the gaps will look like once it lands.

So this isn’t a post about politics. It’s a map. Here is what we know. Here is what we don’t. And here is what the signals are already telling us, if you know how to read them.

What We Know: The Confirmed Picture

This week the government announced a dramatic overhaul of the NDIS. The scheme currently caters for 760,000 people with projections that without reform it would reach 900,000 by 2030. Under the overhaul, that number will be cut to 600,000 instead. The changes will save approximately $55 billion by 2030, slowing forecast annual spending from $70 billion while tightening eligibility and reducing average plan spending.

What people are not understanding is that people will access the scheme over that time, even with tightened criteria. The numbers being cut are more likely to resemble 200000 or more.

These are not rumours. This is published policy, announced this week.

And one detail that needs to be named clearly: the Minister has confirmed that everyone currently on the NDIS will be reassessed under the new assessment tool once it is in place. This is not only about new entrants. It is about people already in the scheme.

Thriving Kids is the new early childhood pathway. It is scheduled to begin from 1 October 2026, with full rollout by 1 January 2028. Children aged 8 and under with developmental delay and/or autism will be assessed under this model. Those with low to moderate support needs will be redirected to mainstream and community services not the NDIS. Only those with a permanent, significant disability and substantially reduced functional capacity will remain eligible for the scheme.

Entry criteria are shifting. The move away from diagnosis-based access toward functional capacity assessment is already underway. The question is no longer only “does this person have a diagnosis?” It is “what can this person not do, and how substantially does that limit their life?” These are different questions, and they will produce different answers particularly for people whose disability is real, significant, and yet invisible in structured assessments.

Social and community participation funding is being cut from 1 July 2026. This is one of the earliest concrete dates in the reform timeline and it is close. Reductions will begin before new assessment tools are in place, before Thriving Kids has launched, and before most families have had time to prepare.

Provider registration changes are rolling from July 2026, with further expansion from July 2027 through to 2030. Platform and SIL registration changes are already moving. The shape of the provider landscape is changing in parallel with the participant landscape.

Support coordination is under pressure. New plans are coming through with support coordination reduced or removed. This is not universal, but it is a pattern.

Plan scrutiny is tightening. Reassessments are happening. Plans that have held for years are being reviewed. Funding levels that felt settled are not.

That is the confirmed picture. It is significant enough on its own.

What We Don’t Know: The Unanswered Questions

What we don’t have is full transparency and the gaps in transparency are themselves informative.

We do not know who is designing the new programs.

Thriving Kids information sessions are running locally. Assessor-style roles are being advertised. Parent and carer training and capacity-building programs are being announced. But the question of who is in the room designing these models, whether people with genuine lived experience of complex autism, co-occurring conditions, and the real demands of caregiving are centrally involved remains largely unanswered.

Co-design that is genuine looks different from co-design that is consultative. From the outside, you cannot always tell which one you’re looking at until the product arrives.

We do not know what the new assessments will actually measure.

Functional capacity assessment sounds rigorous. In practice, functional capacity can look very different on a Tuesday at 10am in a clinical setting compared to a Tuesday at 10am during a sensory overload, a meltdown, a mental health episode, or the third week of school holidays. Point-in-time assessment of people whose function fluctuates significantly is a structural problem that has not been resolved, and it’s not clear it’s being named clearly in the design process.

We do not know what the states will be funded and staffed to absorb.

A central argument for the reforms is that mainstream systems, education, health, community services will hold more. But those systems are not currently resourced to do that. Teachers are at capacity. School-based support is already stretched beyond its funding model. Community health services in many areas have significant waitlists. The NSW Premier has already publicly warned that the state system cannot provide equivalent care to people removed from the NDIS. That warning is worth sitting with.

If the NDIS redistributes responsibility without redistributing resourcing, what we’ll see is not a better-funded ecosystem, it’s people falling through gaps that weren’t acknowledged in the design.

We do not know what happens in regional and rural areas.

Service deserts already exist. Thin markets areas where there are simply not enough providers to meet demand are already a problem under the current system. The assumption that community and mainstream services can absorb more in areas where those services are already minimal is not supported by what we’re seeing on the ground.

We do not know what education’s role will actually look like.

Education has been strangely quiet throughout these reforms, given how central it is likely to be to the new model. Schools are being positioned, explicitly or implicitly as part of the support ecosystem for children who won’t enter or remain in the NDIS. But there has been no corresponding transparency about funding, staffing, or the training that would be required to make that viable.

We do not know the appeal rights.

The Minister has confirmed that specifics including whether there will be appeal rights for people reassessed out of the scheme are still to be finalised. For people who may lose eligibility under the new assessment tool, not knowing yet whether they will have a pathway to challenge that decision is not a small gap. It is a significant one.

What the Signals Are Already Telling Us

You don’t have to wait for the policy to land to know something is shifting. The signals are already here.

We are seeing local Thriving Kids information sessions running through local councils. This is rollout infrastructure, not consultation. The model is being operationalised, not workshopped. The delays are coming from State Governments not late stage consultancy.

We are seeing assessor-style roles being advertised while parts of the system are still described publicly as in a consultation or service design phase. When the workforce is being hired, the design is further along than the public language suggests.

We are seeing support coordination removed or reduced in new plans. This is not an accident. Support coordination is the thing that holds complexity together, it’s how fragmented systems become navigable for people who cannot navigate them alone. Its reduction creates a particular kind of invisible harm: people who appear to be on the scheme but can no longer access what their plan nominally funds.

We are seeing parents and carers receive calls about reassessment. In some cases, plans that have been stable for years are being revisited. For families who have built their lives around a particular level of support, this is not just administratively disruptive, it is destabilising in ways that have real health and functioning consequences.

We are seeing the “reasonable and necessary” bar applied with more scrutiny. Requests that would previously have passed through are being questioned. Evidence that was sufficient before is being asked to be supplemented. The goalposts are not moving in writing they are moving in practice.

We are seeing people in the autistic community, in psychosocial support communities, in complex-needs communities, beginning to make contingency plans. That is not catastrophising. That is accurate risk assessment by people who understand what they stand to lose.

Who Is Most Exposed

Not everyone in the scheme faces the same level of risk. The people most exposed to harm from these changes share some common characteristics and it’s worth naming them clearly.

Children aged 8 and under who will come through under the Thriving Kids model, where the new functional criteria may not capture the real support needs of autistic children who present well in structured environments but whose home reality is very different.

Autistic people whose disability is significant but invisible in point-in-time assessment, those whose functioning fluctuates, those who mask effectively during assessments, those whose home life looks nothing like their performance in clinical settings.

People with psychosocial disability, whose support needs are often complex, episodic, and not easily captured in standardised functional frameworks.

People who rely heavily on support coordination to navigate a system they cannot navigate independently. When support coordination is cut, the plan doesn’t become self-managing. It becomes inaccessible.

People in regional and rural areas where alternative services do not exist and driving distance to any support is already significant.

Families who have built their entire care structure around a particular level of NDIS funding, where a reduction is not just a funding cut but a structural collapse of the daily life that has been built around it.

Participants who use social and community participation supports, where cuts begin from 1 July 2026, before most other changes take formal effect.

Unregistered providers, particularly those used by autistic participants and families who have found registered services to be misaligned with their needs, face particular uncertainty as registration requirements shift. For participants who rely on plan management and self-management to access specific providers, changes here are not administrative. They are relational and functional.

The Pattern Underneath All of It

There is a coherent pattern running through these reforms, and it’s worth naming it plainly.

Standardisation. Assessment is moving toward standardised frameworks and structured tools. Defensible, quantifiable, comparable. This reduces cost and increases consistency. It also reduces the ability to account for complexity, fluctuation, and the things that don’t show up on the day.

Cost containment. Fewer participants, tighter eligibility, more plan scrutiny. This is the stated goal. The mechanism is the design.

Redistribution. More responsibility is being moved toward families, carers, community services, state systems, and schools. This is not always framed explicitly as redistribution, it is framed as “supporting people in their communities” or “investing in mainstream systems.” But redistribution is what it is. The question is whether the capacity to hold that responsibility is being transferred alongside it.

These three things together create a particular risk: a system that looks rational in design documents and produces harm in practice, concentrated in the places where complexity is highest and capacity is already lowest.

The Most Important Thing to Understand Right Now

The 160,000 number is the loud part but incomplete.

The less visible part, and in some ways the more consequential part, is what happens to the people who remain in the scheme. Plans that are nominally active but functionally inaccessible. Funding that exists on paper but cannot be used because support coordination has been removed. Participants who look fine in the data because they’re still in the scheme, but whose functioning is deteriorating because the support that was holding them is gone.

And now everyone currently in the scheme faces reassessment. Not just new entrants. Everyone.

We do not have full transparency. But we have enough signals to understand the direction of travel.

And that means we have enough to start preparing.

The next post covers what that preparation actually looks like for participants, families, and the professionals working alongside them.

Not panic. Stabilisation planning.

#NDIS #NDISReform #NDIA #PWDAustralia #Disability #Policy #Budget2026 #ThrivingKids #Autism #AutismAustralia #PsychosocialDisabilities #AustralianPolitics #ICANAssessments #ICAN

We’re past the point of speculation.

The direction is clear. More than 150,000 people will be removed from the scheme. Participant numbers will be brought from 760,000 down to around 600,000 by the end of the decade. Forecast spending will be reduced from $70 billion to $55 billion by 2030. Legislation is being introduced in Budget Week. Some of it takes effect immediately.

We forget to add that there will be new people entering the scheme, so those cuts will be significantly more and access will be harder. Reducing the scheme from 760,000 to 600,000 participants is being framed as a 160,000 person cut about 21%. But that’s only the net figure.

People will continue to enter the scheme every year through birth, injury, illness, and ageing conditions. Once you factor that in, the system doesn’t just need to reduce numbers by 160,000 it needs to remove, redirect, or block significantly more to offset those incoming participants. Depending on entry rates, the real churn required is likely closer to roughly 26% to 37% of the current scheme over four years. In practical terms, this isn’t a one-off reduction.

It’s a sustained tightening where far more people will feel the impact than the headline number suggests. There is no published breakdown of how much of this reduction will come from children being redirected into “Thriving Kids,” but children aged 0–8 currently make up around 23% of the scheme.

Because the reform is specifically targeting children with developmental delay and autism with lower to moderate support needs, it’s reasonable to expect that a meaningful proportion of the reduction will come from this group once access changes begin, even if the exact percentage hasn’t been stated.

This is not a single dramatic moment. It’s a tightening that has already started and will continue to layer.

So rather than analysing what it means in the abstract, I want to focus on what it means in practice and what can actually be done.

What the cuts actually mean

It’s not just who gets removed. It’s what happens to those who stay.

The public conversation is focused on the 150,000 figure. That’s the visible part.

The less visible part is what happens inside plans that remain active.

We’re already seeing it:

• Plans being reduced or held without clear explanation

• Participation and capacity building supports being questioned

• Less willingness to approve increases at reassessment

• More weight on functional justification, less on narrative or lived experience

• “Reasonable and necessary” being interpreted more narrowly

• Participants quietly redirected toward mainstream or alternative systems

None of these look dramatic in isolation. Together, they are a redesign.

When funding drops below what actually holds a person’s life together, nothing disappears. It moves. Into families. Into unpaid care. Into missed appointments, reduced work hours, people becoming smaller in their own lives because the structure that was supporting them is no longer there in the same way.

That will be called sustainability. It should be called what it is.

Who is most at risk

There’s an assumption that the cuts will hit highest-need participants hardest and first. That’s not how this works.

The people most exposed are those whose lives function because the right supports are in place not the ones whose needs are obvious without them.

Specifically:

Autistic participants, particularly where routine, structure, and environmental consistency are doing a lot of the holding. Remove the support that maintains those conditions and the need doesn’t go away. It becomes a crisis.

Psychosocial participants, whose fluctuating presentation makes standardised assessment unreliable and whose needs are often highest precisely when they look most manageable.

People with chronic and complex conditions fatigue-based, autoimmune, overlapping diagnoses that don’t translate cleanly into the kind of functional assessment the NDIA can work with easily.

Children in early intervention pathways, where state-run foundational supports are being positioned as equivalent, even when the waiting lists, capacity, and quality are not comparable.

Participants whose plans rely on social and community participation to stay employed, stay connected, or stay stable. This stream is being reduced significantly from $4 billion five years ago to $12 billion now, and Butler has flagged it directly as a target.

These are the people who can look fine on paper. They are also the easiest to reduce, redirect, or reassess out over time.

The functional assessment problem

The reform is being framed around function, less emphasis on diagnosis, more on how someone actually operates day to day. In principle, that makes sense.

In practice, it doesn’t land evenly.

Conditions that are consistent and observable tend to translate. Conditions that fluctuate, are context-dependent, or rely heavily on structure and environment don’t.

So you end up with the same populations being squeezed not because they’re being cut by diagnosis, but because they’re harder to standardise. And when something is hard to standardise, it becomes easier to reduce or redirect.

Then the boundary conversations start.

This sits better in health. This is mental health. This can be managed in mainstream systems.

People don’t get cut. They get moved. Whether the support actually follows them is a separate question and right now, the answer is often no.

What to do now

For participants and families

Think in shorter cycles.

If you’ve been operating on the assumption that your plan is stable until review, shift that assumption now. Six to eight weeks is a more useful planning horizon. What is working. What is fragile. What breaks if something shifts.

Don’t wait for the review to fix things.

If something in your plan isn’t working, or if your needs have changed, document it now. Raise it now. The window for flexibility in reassessment is likely to narrow. Getting ahead of it is easier than trying to correct it after the fact.

Look at your documentation.

Not the volume of it, the quality. Does what you have actually describe how you function? Does it show both what you can do and what it costs you to do it? Does it explain what happens without support not just that you struggle, but what that looks like specifically?

If it doesn’t, it’s not doing its job.

Get mainstream referrals in early.

If there’s any possibility you’ll need to rely on health, mental health, or community systems, even partially, referrals need to go in now. Waitlists are already long. They will get longer. Don’t wait until after a plan change to start that process.

Stabilisation over optimisation.

If budgets are going to tighten, prioritise what keeps you functional. Not what might help eventually. Not what looks good in a plan. What actually holds things together.

Stress test your plan.

Ask honestly: if my funding reduced tomorrow, what breaks? If my key supports became inconsistent, what falls over? If I were exited from the scheme entirely, what would remain?

Not as a catastrophe exercise. As a planning tool. The answer tells you where your vulnerabilities are and where you need to build backup now.

For providers and care teams

Stop working in fragments.

If one report says one thing, another says something different, and the supports being delivered are based on something else entirely, the plan becomes incoherent and incoherent plans are the easiest to cut.

Get the team aligned. Same understanding of what matters most. Same language around what happens if support is reduced. Shared articulation of what holds stability.

This doesn’t require a team meeting every week. It requires email chains, brief check-ins, and a commitment to consistency.

Look at what you have before chasing more.

More documentation is not the answer. Better documentation is.

Start with what already exists. Does it describe the person’s functioning accurately both strengths and challenges? Does it explain the relationship between support and outcome in concrete terms? Does it make clear what breaks without the support, and why?

If it does, build on it. If it doesn’t, fix what’s there before adding more.

Balance the picture.

Reports that only document deficits are now a liability. They don’t show what’s working, what can be built on, or what a realistic trajectory looks like. Assessors and planners need to see a coherent story not a list of problems.

Strengths aren’t there to soften the picture. They’re there to show what the plan is building toward and why the support is a reasonable investment.

Prioritise short, doable skill building.

If plan budgets tighten, capacity building supports will be under pressure. The ones most likely to survive scrutiny are those with clear, measurable, achievable outcomes in a reasonable timeframe.

Prioritise skill building that:

• Can be learned and then held with reduced support

• Produces something the person can use independently or with minimal ongoing input

• Has a logical pathway smaller steps first, staging toward bigger outcomes

Long-horizon capacity building with no clear short-term indicators is going to be hard to defend. Don’t wait until review to restructure it.

Build a stabilisation plan not just a support plan.

What does this person’s life look like if their plan is reduced by 20%? By 40%? What does it look like if they are exited from the scheme?

Who steps in? What from mainstream systems is already in place or could be? What informal supports exist and how robust are they?

If your care team hasn’t worked through these questions, the plan isn’t complete.

This isn’t pessimism. It’s due diligence.

Do not rush to bloat or catastrophise reports if that hasn’t already been documented. That will generate red flags. Consistent reporting of risks, barriers and challenges works better for outcomes. That energy is better spent ensuring real time outcomes.

Make mainstream referrals part of your standard process now.

Not as a backup plan. As a parallel track.

If a participant might need health, mental health, or community services in the next 12 to 24 months, the referral should go in now. Not when the plan changes. Not when something goes wrong.

Waitlists are long and getting longer. Getting on them now is the only way to have them available later.

What you do right now matters.

Getting ahead of this isn’t about predicting exactly what will change. It’s about making sure the people you work with are as stable as possible before the ground shifts, so that when it does, there’s something to hold onto.

The bigger picture

This isn’t only an NDIS problem.

The system tightening is real, but it’s landing on a landscape that was already fragmented. Inconsistent support. Poor translation of evidence into daily life. Information that sits behind paywalls or gets lost in social media noise. Services that don’t talk to each other. Lived experience and formal frameworks that don’t meet.

That divide is widening.

Which means the responsibility for those who understand this landscape, who can see what actually works, who can translate complexity into something usable is also growing.

Not to react to every announcement.

Not to chase every change.

But to build something more stable alongside the system, regardless of what it does.

Less fragmentation. More shared language. More consistency between participants, families, carers, and professionals who are all, at their core, trying to help people live.

The system will do what it does.

What we build around it is still within our control.

That matters more now than it did six months ago.

#NDISReform #NDIS #NDIA #FundingCuts #DisabilityRights #AustralianDisability #Budget2026 #Autism #ThrivingKids

You’ve seen the headline:
150,000 people to be cut from the NDIS.

It’s not wrong.
But it’s not how this actually happens.

There isn’t a list. There isn’t a switch. There isn’t a single moment where people are removed en masse.

What’s happening is slower, quieter, and far more effective.

The scheme is being rewritten in real time.

And if you’re working inside it or relying on it, you can already feel it.

Plans are tightening.
Budgets are being reduced without much warning.
Reassessments are becoming more rigid.
Supports that once passed easily are now being questioned.

That’s not hypothetical. That’s already happening.

The announcement this week doesn’t start the change.
It confirms the direction.

The government has been clear about the problem it thinks it’s solving:
The NDIS is “unsustainable.”
It’s growing too fast.
It’s costing too much.

So the response isn’t to dismantle it.

It’s to narrow it.

Fewer people in.
Tighter plans.
More control over what counts as “reasonable and necessary.”

And critically, a shift in what the scheme is for.

Not participation.

Not expansion.

Function.

Maintenance.

Containment.

Social and community participation has already been singled out as “runaway” spending. That framing matters. Once something is labelled that way, it becomes easier to justify pulling it back.

At the same time, we’re being told there will be “foundational supports” outside the NDIS.

That’s the safety net.

In theory.

In practice, those systems are not fully built, not consistently funded, and not ready to absorb the volume of people who will be directed toward them.

So what we are likely to see is not a clean transition.

It’s a pressure shift.

People moving out of one system faster than another can hold them.

And that gap is where the real impact sits.

If you are a participant, nothing changes overnight. But over time, the direction is clear:

Harder to enter.
Harder to increase supports.
More scrutiny on anything that looks like quality of life rather than basic function.

If you are a provider in the NDIS space, this is the moment to pay attention.

Build plans, capacity, and outcomes like your house is on fire.

Because the margin for vague language is disappearing.

We already know plans are being reduced without warning across the system. That trend will not slow down it will accelerate under this reform.

If a reduction in supports would cause significant impact, that impact needs to be visible.

Not implied.
Not assumed.
Documented.

That means:

Clear functional evidence.
Direct links between supports and outcomes.
Explicit consequences if supports are reduced or removed.

Reports cannot afford to be descriptive anymore. They need to be defensible.

Because what is being introduced here is not just reform.

It is a higher threshold for justification.

And anything that sits below that threshold, even if it is valuable, even if it is working, becomes vulnerable.

There are reassurances being offered. Essential daily supports are not the target. Fraud is being addressed. The system is being “stabilised.”

All of that may be true.

But it doesn’t change the underlying shift.

The NDIS is moving away from a model that enables people to build a life, and back toward one that ensures people are supported at a baseline.

That line between life and baseline is where the next few years will play out.

The full budget hasn’t been released yet. More detail is coming.

But the trajectory is already set.

This isn’t a sudden cut.

It’s a slow narrowing.

And the people who will navigate it best are the ones who understand that the rules have already started changing even if they haven’t been formally written yet.

Who is most at risk?

Not everyone equally.

The pressure is not being applied evenly across the scheme.

The people most exposed to these changes are those who sit in the grey areas — where need is real, but harder to quantify or defend within tightening criteria.

This includes:

• people with moderate or fluctuating support needs

• children, particularly those accessing early intervention

• people with psychosocial disability

• participants whose plans rely heavily on social and community participation

• and anyone whose supports are not strongly evidenced or clearly linked to functional outcomes

Risk is also highest at transition points reassessments, new applications, and changes in circumstances where decisions are being made under increasingly restrictive conditions.

This is not about who “deserves” support.

It is about who is easiest for the system to reduce.

With the lack of transparency around DART, the risk assignment software rolling out in August will become part of the decision making processes regarding funding and support.

#NDIS #NDISReform #Budget2026 #DisabilityAustralia #NDIA #NDISCuts

Yesterday I was pleasantly surprised with a reconnection with an old friend from over thirty years ago. We’d been connected on Facebook for a while but never really talked. I’d thought about him often, wondered where he was, how he was. I don’t contact people very often. The familiarity of reclusiveness, isolation is a hard habit to break.

Yesterday we talked, and it was like no time had passed at all. I love those kinds of connections. I loved that across the years, the voice, the person, was just the same. It warms the heart, in those fully embodied ways.

That connection started at AIDEX. The Australian International Defence Exhibition. An arms fair held in Canberra in November 1991. We were both fifteen at the time.

I went down to Canberra on a bus organised by students from Macquarie Uni. I had met them through various activism channels. I remember the bus ride down, the connections began there, I was younger than most of them but they were never condescending, we were united by a common belief, many beliefs, it felt very much like an adventure. I don’t think any of us knew what was ahead of us.

Talking to my old friend sent me down a rabbit hole. I found books, academic papers, I found archives. I found familiar faces and then I found myself, literally, in the archives. There I was in a photograph, fifteen years old, at the front of a picket line. I wasn’t expecting it, it was just there. So young, in a body that feels like lifetimes ago.

I discovered a video on YouTube. Two hours of footage threaded together. I’ve only made it through forty five minutes so far, it’s already jarring in a way I wasn’t prepared for. Someone saying they’ve broken my wrist. Someone else saying this person’s unconscious. Another person unconscious. Watching 6 to 8 police carrying one person at a time, with such aggression and violence. I’ve been to a lot of protests and rallies over the years. Nothing, nothing equated to what we experienced at AIDEX. The police were beyond anything I’ve seen anywhere else before or since.

It is documented as the most police violence the ACT had seen since the Vietnam era. I didn’t know that framing at the time. I was fifteen. I just knew what I could see and feel. As usual the media blamed the protesters, however across 5 days I saw the least confrontations in a protest that I had before and after.

I had spent months at the peace camp at the US consulate earlier that year. Attended rallies, and there were often moments where there were a few protestors that push the line, AIDEX however the organisers we clear and for the most part it was a community of people with a shared interest, shared values. Even when being assaulted by the police people didn’t hit back, being hit, kicked, punched, even whilst on the ground, people with broken bones. There was not the retaliation you would expect. Perhaps fear, perhaps because people were genuinely not violent people, perhaps because we didn’t want to be the narrative.

I was arrested more than once that week. The first time there were four officers for one fifteen year old, five foot four. One of them had been saying explicit things to me. I told him my age. He kept going. I threw an acorn at him, not forceful, in the way a 15 year old kid does when someone is being inappropriate. When he arrested me he made a point of grabbing my breasts. That wasn’t incidental. That was deliberate. That was a statement about who had power and who didn’t. I had already told him I was fifteen.

At some point my mum had to fax my birth certificate to the police to prove my age. A fax. She was at home watching me on the news. She told me later she was half angry and half proud. I think about that a lot. When she died I found an old diary of hers, It had the days I was arrested. Just one sentence. Aleida arrested. Aleida arrested again. Aleida on the news.

One of the arrests involved about twenty of us crammed into the back of a divvy van. It was around the eleventh of November in Canberra. Stinking hot, incredibly humid. We couldn’t breathe. Two people in the van were seriously injured. We tried to do first aid. We started using keys to try to open the canvas so we could get air in. It was terrifying in a completely different way to everything else that week, quieter and more desperate. As they processed the rest of us, the ambulance came for others.

My teacher from Sydney was there too. He got run over by a police car in front of us. A grown man, probably in his mid forties, who knew exactly what he was walking into and came anyway. I watched that happen. At eighteen I moved into a share house two doors down from him. Life has a way of keeping certain people close.

Watching the footage today I saw a woman talking about a man I had been standing next to who was seriously injured by police. They were refusing him first aid. I remember how that felt. Not dramatic. Just a cold, quiet realisation that no one was coming to help.

The book documents hundreds of protesters injured. It mentions kids from an alternative school in Sydney being specifically targeted by young police who couldn’t control their tempers in the heat. Burns from police gloves on people’s chests. People dragged through broken glass. I was one of those kids, though I didn’t know I’d end up in a book about it. We were threatened with being reported to ASIO, at 15 the concept of that doesn’t land in any way that it might.

After AIDEX my mother was contacted by the police, there was some sort of investigation, I had a meeting at some point that I don’t entirely remember. By then I was 16 and it all felt bigger than I understood. I attended with no adult present, I didn’t know at the time it was an issue at the time.

The thing that the footage doesn’t hold, the thing that doesn’t make it into the archive in the same way. The evenings.

After the chaos and the fear and the adrenaline, people would come back to camp and something shifted. Strangers became family almost instantly. Not in a slow, gradual way. In the way that only happens when you’ve all been through the same thing on the same day and there’s no small talk left because you’ve skipped all of it. We’d sit together, share food, decompress. There was music and dancing. There was this unspoken understanding between people who had never met before that day.

I made friends that week who stayed friends for years. There was one group who called themselves the Bunnies. The bunnies were some of the best people I have met, they made what could have been a week laden with trauma, something different, they were only about 5 to 10 years older. I visited them afterwards. There were people I caught up with in Sydney. People I stayed in contact with for a long time. People I’m still connected with now. The bus trip down from Sydney with the Macquarie University students. All of it. A week that compressed time in both directions.

Watching the footage today I recognised moments I didn’t know I’d been carrying. Seeing myself in that photograph was surreal in a way I’m still sitting with. Not nostalgic. More like disorienting. I looked so young. Younger than I remember feeling.

When you’re in it you don’t register your age. You feel capable, certain, part of something. But looking at that photo now I don’t just see myself. I see a kid standing in the middle of something she shouldn’t have had to navigate alone.

The weeks after AIDEX were pretty surreal. You go home. Life continues. Nobody debriefs you. It took me a long time to get over it, fully. I’m not sure I fully understood until much later what had actually happened to my body that week, what it meant, what it cost. I would see my teacher at school and there was a recognition of what we had lived through but never in words.

Years later we sat on the steps of his terrace and talked about it over tea. It still felt surreal. Both of us talking about it like an everyday event, but it was more than that.

I don’t think we talk enough about what it means to be young and political and put in front of that kind of force. I don’t think we’ve ever really accounted for it.

I don’t think that people who haven’t been amongst these situations quite understand how the people with the least power, the protestors, are the ones most blamed by those with power, the media, the politicians but mostly the police. With their badges hidden, the chaos, so many of them have gotten away with brutality, never to be held accountable. It is rarely, ever, justifiable.

The sun was hot that week, people had bought ochre, a clay that was used for sunscreen, its beautiful with oranges and yellows, all the rich earthly colours of Australia. The news reported the protestors covered themselves in faeces. That distinction alone, taught me what lengths the media will go to to sell a headline.

That week in November 1991, taught me more than I might ever have otherwise known. As hard as aspects of it were, the gifts were greater.

If you were amongst the almost 2000 people that week, reach out. I would love to know how other people look back 35 years on.

#AIDEX #AIDEXCanberra91 #AIDEX91 #ProtestsCanberra91 #Activism #ProtestsAustralia

Often I think I have to pick a lane when it comes to my experiences, mostly due to the complexity. It is almost eight years since my first craniotomy to repair an aneurysm. The surgery didn’t go according to plan that’s a long story of its own and I haemorrhaged. Twelve months later, due to the rapid growth of my aneurysm, I went back a second time. Thankfully the clipping was successful.

But this isn’t really about that. It’s about what happens after.

When you have an AVM, a stroke, a brain tumour, an aneurysm ruptured or unruptured brain injury of any kind, you might need a craniectomy. What that looks like is complex brain surgery. From the centre of your head to the base of your ear, they cut. Through skin, through muscle. Part of the skull comes out. Whatever needs to happen in the brain happens. Then they put you back together.

And then you go home.

Nobody tells you what happens when they cut into your facial muscles. Nobody tells you that your sinus passages are implicated, that the way your face sits is implicated, that the way your jaw sits is implicated. That the lymphatics stop draining properly. That your face is going to feel like yours and also somehow not.

You don’t get offered physio. There’s no recommendation to see an ophthalmologist, or an ENT. You’ve had fairly extensive work done, and the follow-up is: see the surgeon at two weeks, six to eight weeks, maybe six months. Annual MRIs if you’re lucky. In between, you figure it out yourself.

Compare that to knee surgery. Knee surgery comes with a rehab plan, mobility aids, physio, follow-ups that are actually about how you’re functioning. The assumption built into the system is that recovery requires support.

Brain surgery, unless you land in a very specific pathway stroke rehab, a neurological team you get fragments. And a lot of us don’t fit that criteria. So we’re left hanging.

If there was a bleed, your brain isn’t just recovering from surgery. It’s processing blood breakdown products, toxicity, inflammation. Nobody talks about what that does to your mental health while it’s happening. The depression. The volatility. The anxiety that sits on you for no clear reason. The suicidal ideation that comes not just from despair but from the biochemical chaos of a brain reabsorbing blood neurotransmitters swinging, sleep gone, impulse control unreliable. This is a known physiological process. It is not talked about. You are sent home into it without warning.

The expectation is that within six months you’ll be back working. It doesn’t work like that for a lot of people. Some people bounce back well. A lot don’t. And there’s no framework for the ones who don’t.

And then there’s the fatigue. Neuro-fatigue.

If you’ve had serious fatigue before autoimmune disease, glandular fever, any of those you think you know what fatigue is.

Neuro-fatigue comes along and says hold my beer. Times ten.

It’s not tiredness. It’s a cutoff. One minute you’re functioning and then your brain just stops dead. Not slows. Stops. If I don’t stop immediately I’m going to pass out standing up. And plenty of times I’ve nearly done exactly that, or have, because my brain just shuts down. It’s like narcolepsy when it hits.

From the outside you look fine. You’re upright, you’re talking, you can show up. But your capacity has already hit the floor and nobody around you can see it.

Then the cognitive dips. The confusion. You lose the thread mid-sentence. Small decisions carry a weight they never used to what to eat, what to reply, what to do next. Things that used to be automatic now require effort you may not have that day. And then there’s aphasia, knowing what you want to say and watching the words just vanish. That’s its own particular thing. Frightening and isolating and hard to explain to people who haven’t experienced it.

And it doesn’t stop at six months or twelve months. For some of us it just keeps going. You learn your limits by blowing past them and paying for it, over and over, until you’ve mapped a terrain that keeps shifting anyway.

That’s a whole new normal. A whole new acceptance. And it’s not passive or pretty. It’s ongoing work, without instructions, without support, while everything else life requires of you keeps moving.

And that’s before you get to everything else.

Families break down. Relationships don’t survive it. Friendships disappear not dramatically, just quietly, because you’ve changed and the people around you don’t know what to do with that. This comes up constantly in survivor groups. It’s not rare. It’s one of the most consistent parts of the experience.

Some of what drives it is the personality changes. And those can start before surgery, an unruptured aneurysm is already affecting the brain, already shifting things, even when nobody around you can see why. Then there’s the surgery, the bleed, the reabsorption, the neurochemical chaos of the first six to twelve months. Impulse control goes. Regulation goes. You become someone your people don’t recognise and you don’t fully recognise either. They grieve you while you’re still in the room. And as they disappear, the isolation deepens, which compounds everything else that’s already happening.

Then there’s survivor guilt. The intense, sudden awareness of your own mortality that doesn’t leave. The shame spirals. The fluctuating capacity that means you can look fine and be completely not fine, sometimes within the same hour. People see you upright and assume you’re okay. And then you feel guilty for not being okay when you look okay. You feel guilty for doing well when other people with the same surgery didn’t. The guilt runs in every direction.

You can’t drive for months. In a lot of places that means you can’t do much at all can’t work, can’t get to appointments, can’t maintain any sense of independence. Every year there are more MRIs, checking that the clip held, checking for new aneurysms. Except they can’t see clearly around the clip. So you never really know. That’s just the baseline now a low hum of anxiety that doesn’t fully switch off.

I’m saying all of this from the privilege of Australian healthcare. The surgery is covered here. That is not nothing that is everything, when you consider what people elsewhere are navigating. In countries without universal healthcare, people come out of brain surgery with bills that can run to hundreds of thousands of dollars. The financial strain alone is enough that some people who survive wish they hadn’t. That’s not a small thing to say. It comes up in the groups. It’s real. And even here, where the surgery is covered, the aftermath isn’t. The physio you need isn’t covered. The specialists you should be seeing aren’t covered. The support that should exist doesn’t. So if you’re somewhere that the surgery itself nearly bankrupts you, the gap between surviving and actually recovering becomes almost impossible to bridge.

We don’t talk about this enough. We don’t talk about what craniectomy actually does to the face and head and all the structures around the brain that get implicated in getting to it. We don’t talk about neuro-fatigue as something serious and disabling in its own right. We don’t talk about the cognitive fluctuations that last years. We don’t talk about the depression and suicidal ideation that comes when your brain is reabsorbing blood, because that’s not the part of the story anyone wants to hear. We don’t talk about the relationships that don’t survive it, or the isolation, or the guilt that runs in every direction, or the anxiety that becomes permanent background noise.

The scar may sit in the hairline for many of us but we notice the dents, the scar tissue, the change in symmetry, we feel the numbness and the changes in every movement. This too changes self esteem and social capacity.

There should be standard follow-up that includes jaw and facial physio, ENT assessment, ophthalmology review, lymphatic drainage support, and real neuropsychological monitoring not just cognitive testing, but how you’re actually living.

Not because something has gone wrong.

Because something significant has happened.

Survival is treated as the finish line. For a lot of us, it’s just where the real work starts.

Everywhere you go there is someone who tells you how lucky you are. Lucky it was caught early, lucky it wasn’t worse, lucky you didn’t die. For some of us that luck doesn’t ever settle, for some of it cost more than we might ever have been prepared to pay.

#Aneurysm #Aneurysms #AVM #BrainSurgery #Craniotomy #BrainInjury #TBI #ABI #Stroke

Most explanations of autism start from the outside and work inwards. They begin with what can be observed, measured, or compared to a neurotypical standard, then build assumptions about what must be happening underneath. What they rarely do is start with the system itself.

Book One explains the machine.

Notes from a Hostile Planet: Inside is a physiological map of the autistic nervous system, written from the inside, grounded in the research, without the deficit framing that turns neurological difference into personal failure. Thirty-nine chapters covering the systems and functions that shape autistic experience from the ground up: the gut and its direct line to the brain, sensory processing and why the filter doesn’t filter, the autonomic nervous system and why it runs hot, executive function and what actually happens when it fails, pain, hormones, immune function, memory, time perception, inertia, and burnout.

The central argument is this: the exhaustion is real, the load is measurable, and none of it is a character flaw.

Autistic people are not neurotypical people with broken social skills. We are people with a genuinely different physiological architecture, a different load profile for almost every daily activity, a different relationship between the nervous system and the environment, a different recovery curve after demand. Understanding that architecture changes everything. It changes what the crashes mean. It changes what the inconsistency means. It changes what help actually looks like.

This is not a self-help book. It will not teach you to function better in systems designed to exclude you. It will give you accurate information about what your body is doing and why, the information most autistic people were never given, and should have had from the start.

For autistic adults, parents of autistic children, and clinicians who suspect the clinical model is incomplete.

Notes from a Hostile Planet: Book Two — Outside

Book One mapped the body. Book Two maps what that body is asked to navigate.

Notes from a Hostile Planet: Outside is a field guide to the external terrain, every environment, institution, and human system that autistic people encounter daily, examined honestly for what it actually costs. Not what it’s supposed to cost. What it costs.

The supermarket. The open-plan office. The phone call. The job interview that tests social performance and calls itself a meritocracy. The school that taught you your struggles were moral failings before you had language for what was happening. The healthcare system that exhausts the people who most need it. The bureaucracy. The form with a four-line box for a situation that cannot be contained in four lines. The legal system. The waiting room. The fluorescent light that everyone else has stopped noticing.

Structured in five parts, immediate sensory and environmental terrain, institutional systems, relational systems, the internal feedback loop of what the outside world does to the inside body, and the sustaining forces that make autistic life worth living, Book Two builds a complete account of what it means to exist as an autistic nervous system in a world designed for a different one.

The argument is direct: the difficulty is not personal. Every environment you struggle in was built for someone else’s nervous system and handed to you with the instruction to adapt. The mismatch is real, the costs are measurable, and the appropriate response is not to try harder to become a different kind of person.

This book will not make the world less hostile. It will make the hostility legible, specific, named, located in design rather than in you. And it will document, in the final section, what actually sustains autistic people through the hostile stretches: the special interests, the creative practice, the community, the glimmers of rightness that prove life can be good even when most of it is hard.

For autistic adults, parents, clinicians, and anyone who has spent years believing the problem was them.

Available On Amazon

Book 1 https://amzn.asia/d/0hUi9s1t

Book 2 https://amzn.asia/d/0jkTbMGv

#AutismBooks #AutisticWriters #AutisticAuthor #Autism #Autists #NotesFromAHostilePlanet #ReframingAutism #SelfPublished #AnAutistsFieldGuide #AutisticResearcher #LivedExperience #ActuallyAutistic

Something is shifting across social media right now.

People with large platforms are starting to call things out. They’re calling out performative inclusion. They’re calling out polished advocacy. They’re naming the gap between what people say and what they actually do.

And they’re not wrong.

I’ve written about this before. I’ll keep writing about it. Because advocacy done incorrectly doesn’t just miss the mark, it creates harm.

But here’s the part I’m not seeing discussed clearly enough:

We keep asking whether inclusion is performative. We’re not asking how inclusive our idea of inclusion actually is.

What inclusion is, and what it isn’t

Inclusion isn’t a statement. It isn’t a framework someone built and decided was complete. It isn’t a set of approved language, a particular communication style, or a way of understanding the world that belongs to one group and gets applied to everyone else.

Genuine inclusion is expansive. It holds complexity. It makes room for realities that don’t fit neatly into the current conversation including the realities of people who can’t speak as loudly, who aren’t online, who don’t have the diagnosis, who haven’t found the language yet, or who experience things in ways that don’t reflect the dominant narrative.

Right now, when I look at conversations happening under the banner of neuroaffirming, neuroinclusion, and neurodiversity I don’t always see that. What I see instead is partial perspectives being treated as complete ones. Certain voices amplified. A growing level of certainty in a space where certainty simply doesn’t exist.

And I need to say this plainly: just because you have an autistic experience doesn’t mean you are certain of someone else’s. Autism is not one experience. It is not one lens. It is not one way of moving through the world.

We know a significant proportion of online information about autism is inaccurate. We know much of the research being presented as definitive has limitations. We know understanding is still evolving. And yet people are speaking as though they hold the final word.

That certainty has consequences.

What advocacy is and what it costs when we get it wrong

Positive representation isn’t just about what you say. It’s about who you leave out when you say it.

I recently watched an autistic man get piled on for speaking up. His post wasn’t perfect. But that wasn’t really the point. He was trying to name something real that men experience diagnostic and support gaps too. And instead of that being explored or even held with curiosity, it was shut down.

This is where it gets complicated. Yes, historically marginalised voices deserve amplification. That’s not up for debate. But inclusion doesn’t mean narrowing the conversation in a different direction. It means expanding the space so more realities can coexist.

Real inclusion looks like male voices, BIPOC voices, culturally and linguistically diverse communities, people across all support need levels, parents and carers, and people with other neurodivergent profiles who are regularly talked over in spaces that claim to speak for them. Not as an afterthought. Not as a checkbox. But as part of the core conversation.

Because neuroaffirming strategies don’t automatically translate across the full scope of neurodivergent experience there is no single baseline. What works beautifully for one profile may be irrelevant or even counterproductive for another. When we present it as if there is a universal approach, we’re not being inclusive. We’re simplifying something that isn’t simple.

And this is where advocacy becomes a responsibility, not just a platform.

The responsibility of a platform

Right now, autism is highly visible. Funding systems are under scrutiny. Media coverage is shaping public perception. Policy is being formed. The way we talk about disability, neurodivergence, and support needs has impact far beyond our own communities it shapes how the people who control funding and policy see us.

This is not the time to narrow the conversation through infighting. It is not the time to silence autistic writers and academics because their understanding doesn’t perfectly match yours. It is not the time to pile on and then watch someone self-censor, shrink, or leave the conversation entirely.

When we do that, we don’t produce better advocacy. We produce fragmentation. We lose nuance. We lose people. And we lose credibility with exactly the audiences we need to reach. A divided community doesn’t produce better outcomes it amplifies the voices of those who are already most visible, not necessarily the most accurate.

And here’s something else we’re not talking about clearly enough: when it comes to the NDIS, autism has the spotlight right now. It’s being blamed for budget overruns. It’s dominating the conversation. But the NDIS isn’t about autism. It’s about people with all disabilities.

When the conversation becomes dominated, when the space becomes saturated, when we position our needs as the primary concern, we’re crowding out the people who also rely on that system. We’re disrupting access for people with physical disabilities, intellectual disabilities, sensory disabilities, and others who have been navigating this system far longer than autism has been in the media cycle.

That stops being advocacy. It stops being inclusion. It becomes a louder version of the same problem.

Consider a member of the public trying to understand autism and neurodivergence, trying to understand what’s being funded, what support looks like, what actually helps. Their view is shaped by what they see. And what they see right now isn’t clear. It’s fragmented, reactive, and often more focused on internal correction than external understanding. Public perception doesn’t form in a vacuum. It forms from what’s visible.

Now consider a Member of Parliament with no lived experience of autism or disability, trying to understand what’s being funded, why it’s being funded, and what outcomes it’s actually producing. They would be looking for clarity. They would be asking: what is the NDIS for? Who does it serve? Why are we hearing so much about autism specifically? If they looked to public conversations to help them understand they wouldn’t find a clear picture. They would find autism dominating the narrative. They would find other disabilities sidelined. They would find contradiction, competing certainties, and internal conflict. And confusion doesn’t lead to stronger support. It leads to doubt, hesitation, and a funding environment where cuts feel easier to justify than investment, cuts that affect everyone, not just autistic people.

That’s the part we need to sit with. We’re not just shaping conversations within the community. We’re shaping how the entire space is perceived by the people who decide whether it gets funded. If what they see is one disability group drowning out all the others, we’re not creating allies. We’re creating resentment. We’re creating a system where disability advocacy is seen as infighting rather than genuine need.

When outrage isn’t enough

Here’s the uncomfortable pragmatic truth: policy isn’t waiting for us to get our house in order.

Outrage doesn’t move legislation. Division doesn’t shift funding models. Pile-ons don’t change systems. What does move things is unity, clear and grounded information, and teachable moments that meet people where they are including policymakers, media, and the general public who are still forming their understanding.

This is where we get to educate. This is where careful words and careful representation matter. Not because the truth needs softening but because we’re trying to change something. And if the system won’t build the right model, then we build the culture ourselves. We show people what genuine support looks like. We demonstrate how autistic and neurodivergent people can be supported well and how they can advocate for themselves when formal support isn’t available or isn’t adequate. We take control of the narrative, not by shouting louder, but by making the truth impossible to ignore.

What we owe each other

Change is the only constant in this space. Our understanding of autism is evolving. Our language is evolving. Our frameworks are evolving. That’s not a weakness, it’s evidence that we’re learning.

But with that change comes responsibility. Responsibility in how we educate, how we communicate, and how we hold space for complexity and for people at different points in their understanding. Everyone’s experience of autism is different. People reach understanding in different ways. The person whose framing isn’t quite right yet might be someone who becomes a powerful voice in five years, if we don’t shut them down today.

We also owe something to the broader disability community. The NDIS was never built for one group. It was built for everyone who needs it. And if our advocacy, however well-intentioned, is consuming the oxygen in a room that other people with disabilities also need to breathe in, that’s not inclusion. That’s displacement.

When you use the word inclusion, ask yourself: who is missing from this? Whose voice am I speaking over? Where is my own privilege operating here?

Because the loudest voices are not the most accurate. And right now, we need breadth, accuracy, and genuine solidarity more than we need volume.

#Advocacy #Autism #Disability #NDIS #NDISReform #DisabilityAdvocacy #Unity #Inclusion

What Happens When There’s Nowhere Left to Fall

I want to tell you what it looks like when the system runs out.

Not in policy language. Not in percentages. In what actually happens to a person.

You have someone, let’s say they have CPTSD, or BPD, or a combination of things that took years to even name properly. They’ve been on the NDIS. It hasn’t been perfect. The support worker wasn’t always trained for what they were facing. The support coordinator was carrying too many people to carry them well. The allied health visits were inconsistent. But there was something. There was a thread. Someone showed up. Someone answered the phone. Someone helped them not lose their housing that month.

Now that thread is cut.

Where do they go?

Not to community mental health, those waitlists are measured in months, and the service, when you finally reach it, is an outreach worker who calls three times a week and has no capacity to do anything pragmatic. Not to a psychiatrist, the wait is long, the cost is prohibitive, and good luck with medication management if your GP doesn’t have the bandwidth or the training to bridge that gap. Not to inpatient, getting someone admitted who isn’t acutely, visibly, immediately dangerous is nearly impossible now. The criteria have been tightened to the point where the system’s effective position is: come back when it’s worse.

So they present to ED. They get stabilised, if that’s the word for it, and discharged. They come back. The door revolves. This isn’t a metaphor. This is what I’ve watched, repeatedly, working across crisis teams, inpatient, child and adolescent services, community outreach. I have not once, not once, seen the mainstream mental health system reliably stabilise someone with complex psychosocial disability and return them to genuine functioning. What I’ve seen is pressure transferred back onto the person, or their family, or whoever in their life hasn’t burned out yet.

You can’t bandage a break and wonder why someone isn’t healing. You can’t put a bandaid on wounds that require stitches and call it care.

This is what we’re talking about returning people to.

Professor Allan Fels, who chaired the NDIS review, recently suggested the scheme could save money by “reorientating” how it deals with “those with psychosocial disability.” That daily living supports for “mentally ill patients” could be “shaved back.”

I want to sit with that language for a moment. Mentally ill patients. Shaved back. Bang per buck.

Policy makers who speak this way seem to have never felt the anguish of the carer managing containment. The locked boxes of medications and sharp objects. The sleepless nights, the anxiety and dread of the unpredictability. They have never felt the sense of uncontrollability, the fear of oneself, the overwhelm, the anguish of actually living with mental health complexity or loving someone who is. That is the reality that gets “shaved back.” Those are the daily living supports that become a budget line.

This is the frame of someone who has never had to make the call. Who has never tried to get a participant into a longer-term placement and been told there’s nothing available. Who has never watched what happens to someone with complex psychosocial needs when their support package disappears and the community services they’re redirected to are themselves understaffed, undertrained, and at breaking point.

There is a reality embedded in what Fels is saying that isn’t entirely wrong: the NDIS has not served psychosocial participants well. Funding has often been misaligned. Supports have frequently been inadequate to the complexity of what people were actually living with. Support workers were put in positions requiring mental health crisis management they had no training for because the role was never designed for that, and a two-day workshop in trauma-informed practice doesn’t change that. Support coordinators were managing caseloads so heavy that genuine engagement was impossible. Allied health practitioners were defaulting to standardised treatments, straight to pharmacological, straight to DBT or CBT, without expanding their toolkits, without listening to families, without listening to the people themselves. This has burned people out, workers and participants both, and it has caused harm.

But whose fault is that?

It was not the fault of the people who needed support. It was not the fault of the workers doing their best in roles that were never designed for what they were being asked to do. It was the fault of a system that included psychosocial disability without thinking through what that inclusion actually required. Without funding adequate training. Without building the pathways. Without acknowledging that “reasonable and necessary” and “goal-related” are phrases that do real violence when your goals are variable, your baseline shifts, and your needs don’t fit a linear progress framework.

We call people maladapted. The system is maladapted. It doesn’t understand complexity. It doesn’t understand intersection. It works in silos, with tools and frameworks that are outdated and poorly fitted, administered by people who are themselves unsupported and burning out. And then it looks at the person in front of it and records non-compliance.

The psychosocial cohort is approximately 10 to 15 percent of NDIS participants, and a very small portion of supported independent living. This is not where the scheme’s financial pressure is coming from. What it represents is a group of people for whom there is genuinely no adequate alternative and for whom the consequences of removal will not be abstract.

We closed the psychiatric facilities. We told ourselves the community would absorb it. And the community did absorb it, into homelessness services, into EDs, into families already at their limits, into people sleeping rough with unmanaged medications and no continuity of care. That absorption is still happening. It never stopped. And neither did the blame, the relentless, structural blame of people with mental health conditions for the failures of the systems that were supposed to hold them.

We are not in a position to repeat that. We cannot make decisions about psychosocial NDIS funding as though there’s somewhere else for these people to land, because there isn’t. The mental health system is not a net. It is not currently capable of catching what the NDIS would release. Anyone saying otherwise is either not working at the coalface or not being honest about what they’re seeing there.

No one gets here alone. Every person at crisis point, every person who is unhoused, every person cycling through ED, every family at breaking point, they got there by being failed at multiple turns. By systems that weren’t equipped, weren’t funded, weren’t listening. By services that handed them back to themselves and said: we’ve done what we can. By a culture that keeps locating the problem in the person rather than in the structures that were supposed to serve them.

People with BPD, bipolar disorder, schizophrenia, CPTSD and people managing conditions that require sustained, skilled, consistent support, cannot be failed more thoroughly than they already have been. The outcomes are the evidence. If these systems were working, we would see it. We would see people stabilising, progressing, returning to their lives. Instead we see the opposite: people whose mental health has declined because of their contact with services, who have ended up on the NDIS in part because the mental health system made things worse. That is not a small thing to sit with. The system’s own outcomes are an indictment.

And this is not a problem that resolves when NDIS funding is present. Even with supports in place, people with complex psychosocial disabilities cycle through ED, through inpatient, through crisis services because the underlying systems are not equipped to treat and stabilise, only to contain and discharge. The revolving door is not a metaphor for a minority of hard cases. It is the dominant pattern. It is what the system produces. What NDIS funding has done, at its best, is slow that cycle provide enough stability that presentations become less frequent, less acute, less costly. Remove it, and the door doesn’t just keep spinning. It spins faster, with more people, at greater cost to everyone involved.

The media cycle right now is doing something I find genuinely dangerous. It is moving the target, autism, then psychosocial disability, then funding “rorts” in ways that divide a community that cannot afford to be divided, and that make people with disabilities feel like burdens, like problems to be solved, like costs to be reduced. I know people in these communities who read those comment sections. I know what it does to them. People are not responsible for the misalignments. They are not non-compliant. The system just does not serve them, and has never fully served them, and we need to stop pretending otherwise.

We understand that NDIS funding has to be better managed. That is real, and worth saying clearly: there has been mismanagement, misalignment, waste and almost none of it is located in the people receiving support. The bleed is in the system. The churn is in the system. That is where accountability belongs.

Let’s talk about what the savings actually look like. According to the Australian Institute of Health and Welfare, the average cost of a single day in an acute psychiatric inpatient unit is $1,665, and that’s before you factor in ED time, which for mental health presentations now averages seven hours before admission, the highest on record. Mental health beds are at their lowest per-person capacity ever recorded. More than 300,000 mental health-related ED presentations occurred in 2020–21, a number that has been climbing steadily for years. The people arguing that cutting psychosocial NDIS funding is a responsible fiscal decision are not wrong that money moves, they’re wrong about where it goes. It goes to ED. It goes to inpatient. It goes to homelessness services already at capacity. It goes to police and courts and crisis responses that help no one and stabilise nothing. It disappears into other portfolios, other budget lines, other ministers’ problems and the connection never gets made, because the system is not designed to make it. This is not a saving. It is a cost transfer onto the most fragmented, overwhelmed parts of the system, absorbed by the people least able to absorb it.

If we want outcomes, and outcomes are the only honest measure, we have to ask what it costs not to fund this properly. We have to ask what we’re measuring when we say a system is failing. Because if the measure is money out the door, we are asking the wrong question. The right question is: are people more stable, more housed, more able to participate in their own lives? Are families less at breaking point? Are workers less burnt out? Are we seeing fewer ED presentations, fewer revolving doors, fewer people on the street with unmanaged conditions?

If those outcomes aren’t there, the answer is not to cut. The answer is to understand why the system itself is maladaptive, and to change it.

You don’t save money by removing the floor. You just move the cost somewhere harder to see.

#NDIS #NDISReform #NDIA #PolicyReform #MentalHealthServices #MentalHealth #PsychosocialDisability #SystemicFailings

There’s a lot of noise right now.

Autism is being blamed, again, for the cost of the NDIS. Budget scrutiny is intensifying. The conversation about shifting toward ICANN frameworks and thriving kids, and outcomes is generating heat on every side. Advocates are exhausted. Participants are anxious. Providers are watching their funding structures shift beneath them. Compliance is scattered, transparency is as absent as ever. Codesign goes ignored.

And in the middle of all that noise, something significant just passed almost entirely without comment.

By August this year, the NDIS Quality and Safeguards Commission will have a live artificial intelligence system assigning risk scores to participants, providers, workers, and provider networks across the scheme. It’s been procured. It’s being built. The timeline is confirmed. And almost no one in the disability community appears to know it’s coming.

I think that needs to change.

What It Is

The system is officially called a “decision-support capability,” though in procurement documents it’s referred to as a risk engine. It sits inside a broader four-year, $160 million program called the Data and Regulatory Transformation program DART which is the Commission’s infrastructure overhaul. The risk engine is one of the central mechanisms of that overhaul.

Here’s what the procurement documents say it will do: calculate “automated, explainable risk scores and risk tiers” for providers, workers, participants, and networks. It will identify those “that present the greatest risk of harm, unacceptable quality and safety, fraud or non-compliance.” It will improve visibility of the NDIS market, enable earlier identification of risk before harm escalates, and drive what the Commission describes as “more consistent and defensible decision-making.”

Importantly, the Commission has been explicit that this is not an automated enforcement system. Decisions will still involve human judgement. The engine produces scores and surfaces patterns it doesn’t directly suspend registrations or cancel plans.

That distinction matters. But so does understanding what it actually means in practice, which I’ll come back to.

One detail worth noting: this doesn’t require new software to be purchased. What the Commission is procuring is external expertise to bring together multiple existing risk indicators, alongside new ones with data pipelines and visualisations, built into a single coherent analytics capability. The infrastructure is largely already there. What’s being built is the integrating intelligence on top of it.

Essential requirements are to be delivered between May and August this year. The system will then be progressively enhanced over nine months, with final handover scheduled for May 2027. This is explicitly not a “big bang” delivery, it goes live early, then improves. Which means it will be making assessments before it is fully refined.

What It Will Actually Do On the Ground

When you read through the stated capabilities, they break into roughly three categories.

The first is operational efficiency. Faster complaint handling. More targeted incident triage. Investigations directed at the highest-risk actors rather than spread thinly across the market. For a Commission that has been chronically under-resourced relative to the scale of what it’s regulating, this is genuinely significant. The NDIS market is enormous and complex, and the Commission has faced sustained criticism for response times and inconsistency.

The second is systemic detection. This is where the network-level risk identification comes in. The risk engine isn’t just looking at individual providers or participants in isolation, it’s looking for patterns across networks. This matters because the most serious exploitation of the scheme has tended to operate through networks: related entities, shared directors, coordinated billing. Individual-level auditing has real limits in detecting that. Pattern recognition across relationships does not.

The third is consistency. The Commission has acknowledged that its decision-making has been variable. Risk scoring is partly a response to that, if you have a structured, data-driven basis for decisions, they become more defensible and, theoretically, more equitable across the market.

That’s the intended function. Now let’s talk about the risks.

The Upside Is Real - And So Is the Danger

I want to be clear that I’m not writing this as an objection to the risk engine in principle. The legitimate upside here is significant.

Fraud in the NDIS is real. Exploitation of participants including some of the most vulnerable people in the country is real. Providers who deliver poor quality support while billing the full rate are real. The Commission needs better tools. A well-designed, properly governed risk engine could meaningfully improve the safety of the scheme and the integrity of the market.

But “well-designed” and “properly governed” are doing enormous work in that sentence. And right now, we don’t have visibility into either.

The core question with any automated risk scoring system is: what data is being weighted, and by whom? Risk scores are not neutral. They encode assumptions about what looks risky. Those assumptions can be accurate, biased, or somewhere in between — and the people being scored don’t get to see the logic.

The Commission has committed to “explainable” risk scores. That’s a term of art in machine learning that means the system can, in principle, provide a reason for the score it assigns. It does not mean the reasoning is transparent to participants or providers, or that it’s contestable in any practical sense. “Explainable to regulators” and “explainable to the person being scored” are very different things.

Why This Matters Specifically For Autistic Participants

I work with autistic people. I understand how autistic nervous systems operate, and I understand how autistic behaviour is read by systems that weren’t designed with autistic people in mind.

Autistic people already have disproportionate contact with regulatory and administrative systems that misread their behaviour. Communication differences get flagged as evasion. Difficulty with administrative processes gets read as non-compliance. Patterns that are entirely consistent with disability irregular service use, frequent changes in providers, complex support needs that don’t fit standard categories can look anomalous in a dataset.

If the risk indicators in this engine are designed without explicit, sophisticated consideration of what atypical-but-legitimate looks like in an autistic or otherwise disabled context, then the system will generate false positives. It will surface participants for scrutiny who are navigating their disability, not gaming the scheme.

And here’s the problem: once a risk tier is assigned, it creates administrative momentum. A participant or provider with a high risk score will receive more scrutiny. That scrutiny takes time and energy to respond to. For autistic people many of whom are already operating under significant load, administrative burden is not a neutral inconvenience. It is a genuine harm.

The system is not an enforcement mechanism. But a risk score shapes the environment you’re operating in. It shapes who gets investigated, who gets audited, who gets their claims processed slowly or quickly. The effects are real even if the score isn’t a direct sanction.

The Questions That Need Asking

The Commission is not required to consult with participants or providers about the design of its internal regulatory tools. This risk engine may have been developed entirely without disability community input. I don’t know that information isn’t publicly available. But the absence of public conversation about it suggests that if consultation has occurred, it hasn’t reached the people most affected.

There are questions that need to be on the record.

What data sources are being used to generate risk indicators? Is any existing participant data claims history, support types, complaint history being used to score participants? If so, what safeguards exist against scoring patterns that simply reflect the complexity of disability rather than risk?

How will risk tiers be communicated to those being scored? Will participants or providers be notified that they have been assigned a high-risk tier? Or will they only discover it when their interactions with the Commission become inexplicably more difficult?

What is the appeals or review mechanism? If a risk score is wrong and some will be what is the process for challenging it? Who has standing to request a review? What does the evidence base for contesting a score look like?

What independent oversight exists? The Commission governs itself in this respect. Is there any external review mechanism Parliamentary, ombudsman-level, or otherwise built into the DART program that would evaluate whether the risk engine is producing accurate and equitable results?

These are not hostile questions. They are the minimum due diligence for a system that will, within a few months, be making automated assessments of hundreds of thousands of people’s risk profiles.

What You Should Do Now

If you are an NDIS participant: you should know this system is coming. You don’t need to panic, but you should be informed. Start keeping records of your interactions with the Commission, complaints lodged, incidents reported, communication patterns. If your experience of the scheme changes in unexplained ways after August, that context will matter.

If you are an NDIS provider: the network-level risk detection is specifically relevant to you. If your business has any structural connections to other providers shared infrastructure, referral relationships, former employees understand that the system will be looking at those relationships. This is not a reason to do anything differently if you’re operating properly. It is a reason to have your documentation in order.

If you are an advocate, a support coordinator, a planner, or anyone who works with participants: start thinking about what administrative support people might need if they find themselves subject to increased scrutiny without clear explanation of why.

And across all of these: start asking questions publicly. Parliamentary inquiries, community forums, provider peak bodies this is the moment to get the Commission on the record about how this system will work and how it will be governed.

Why No One Is Talking About This

The ITnews piece that broke this story ran on April 13. It’s a solid piece of technology journalism, focused on procurement and technical architecture. As far as I can find, it hasn’t been picked up anywhere in disability media, advocacy spaces, or general news.

That’s not entirely surprising. The story is technical, embedded in procurement documents, and landing in a news cycle already saturated with NDIS controversy. It doesn’t have a villain or a victim, yet. It’s a system in development, with a stated beneficial purpose, backed by a government program with official support.

But the history of automated decision-making systems in welfare and insurance contexts is not reassuring. Robodebt was a decision-support tool until it wasn’t. The common thread in systems that cause harm is not malicious intent it’s the gap between how a system is designed to work and how it actually functions when it meets the complexity of real lives.

The NDIS serves some of the most complex lives in the country. The people whose risk the Commission will be scoring are, by definition, people whose needs are significant enough to require a funded support system. That complexity is not a red flag. It is the baseline.

A risk engine that doesn’t account for that is not a neutral tool. It is a problem.

We have a few months to ask the right questions before this goes live. That window is narrower than it looks.

If you found this useful, share it with providers and participants who need to know it’s coming. The more people who are asking these questions before August, the better the chance that someone has to answer them.

#NDIS #NDISReform #DisabilityAdvocates #DART #DisabilityMatters #DisabilityRights #AustralianDisabilityCommunity

Whilst this is written with an Autism lens it applies to disability across the board.

TW Self Harm, SI, SA, Trauma. Confronting statistics

The Human Toll

We keep talking about cost.

Funding. Budget pressure. Too many diagnoses. Systems that can’t cope.

Across Australia, the UK, Ireland, the US same conversation, different accent. Autism as burden. Autism as budget line. Autism as something to be managed down.

Nobody is asking the question that actually matters.

What is the cost of getting this wrong?

Because it isn’t abstract. It isn’t theoretical.

It’s a body count.

And I don’t just mean death, though that’s there too.

I mean lives that are diminished, narrowed, or quietly erased in ways we’ve decided not to measure. Lives that don’t end dramatically. They just stop being what they could have been.

That’s the toll we’re not talking about.

Start with employment. It’s one of the clearest measures we have of whether a society actually supports its people.

In Australia, 38% of autistic people are employed. The non-disabled rate is 84%. In the UK, only 16% of autistic adults are in full-time paid work. In the US, somewhere between 14 and 20%.

Those numbers have not meaningfully moved.

We run awareness campaigns. We celebrate autistic characters on TV. We call it progress.

The figures stay the same.

Because the environment doesn’t adapt. The person gets blamed. And we call that inclusion.

Education is where it starts to fall apart.

In Australia, autistic students are significantly more likely to be suspended or excluded. High rates of school refusal, partial attendance, early disengagement. In the UK, 1 in 5 autistic pupils are persistently absent. In the US, bullying rates run 3 to 4 times higher than for non-autistic peers.

Every young person pushed out of school is another person at risk. Of unemployment. Of isolation. Of everything that follows when the system that was supposed to prepare you for the world decides you’re too hard.

We point to awareness campaigns and think that’s protection.

It isn’t.

Kids still bully kids. Some kids get bullied more because of the stereotypes being pushed through the media. Sometimes representation does more harm than good, even the positive kind. Because it creates a palatable version of autism, and everyone who doesn’t fit it gets left behind.

Again.

After education, the picture doesn’t improve.

In the US, 87% of autistic young adults live with a parent after high school. In the UK, only 21% of autistic adults live independently. In Australia, overrepresented in supported accommodation, underrepresented in stable housing, reliant on family care well into adulthood.

This is not independence. This is not the outcome anyone claims to be working toward.

But it’s what’s actually happening.

Now the part nobody wants to sit with.

Autistic people are overrepresented in harm. Across the board.

Abuse. Domestic violence. Sexual assault. Foster care. Systems designed to protect, that don’t.

44% experience victimisation across their lifetime. Factor in multiple types and that rises to 84%. Up to 90% of autistic women and girls experience sexual or gender-based violence. Autistic children are 2 to 3 times more likely to experience maltreatment.

We don’t ask why vulnerability keeps finding the same people.

We don’t ask why protection keeps failing them.

We argue about diagnosis rates.

Self-harm. Suicide.

Around 24% engage in self-harm. 20% of autistic children and teens report suicidal thoughts. 10% report attempts, double the rate of non-autistic peers.

These are not surprises. They are the predictable result of a population that is chronically unsupported, chronically misunderstood, and chronically failed by systems that were never built for them.

We have known this for years.

We keep talking about funding instead of outcomes.

We spend billions on Autism research, genes, cures, repeat. So little is spent on outcomes. On betterment of Autistic lives.

We fund organsations that do little or nothing and worse still, harm.

We need accountability and transparency.

Here’s what nobody will say out loud.

The long-term cost of getting this wrong is far greater than the cost of getting it right.

What we’re funding is the aftermath. Crisis services. Emergency interventions. Systems that catch people after they’ve already fallen, if they’re caught at all.

We are not funding prevention. Not early support. Not proper education, real employment pathways, safe housing, accessible healthcare. Not the conditions under which autistic people could actually live their lives.

And then we call it a budget problem.

This is not about whether we can afford it.

It’s about how many people we’re willing to lose before we admit what we’re doing isn’t working.

One more thing.

The community is not innocent in this either.

The gatekeeping. The division. The infighting over who counts, who gets to speak, whose experience is valid. The silencing. The exclusion happening inside the spaces that are supposed to be safe. We do not get to choose who builds platforms, who is represented, who becomes advocates. Those who do have a responsibility and it matters more now than ever. The loudest or most present voices are not always the right ones. Or the most inclusive.

That adds to the toll.

It fractures the collective voice at exactly the moment it’s most needed. And it hands the people who want to cut services a very convenient argument.

This shouldn’t be about who we fund.

It should be about whether we fund it properly.

Right now, we don’t.

Existing was never the goal.

Living was.

Until we’re honest about the gap between those two things until we look directly at what’s accumulating inside it we are not having the real conversation.

The human toll is not a metaphor.

It’s what’s happening right now. To real people.

And we keep looking away.

#Autism #MortalityRates #Statistics #BodyCount #HumanToll #TheCostOfFailing #Disability #Outcomes

We talk about autism constantly.

Prevalence. Identity. Language. Advocacy. Awareness.

What we don’t talk about, not honestly, not structurally, is misalignment. And misalignment might be the single biggest driver of harm in autistic lives.

Not absence of support. Not lack of diagnosis. Not even lack of funding, though that matters.

Misalignment. The gap between what a person needs and what every system around them is actually built to provide.

I’ve watched this across more than twenty-five years of working in this space. I’ve watched it across my own life. Across my children’s lives. And the pattern doesn’t change.

Misalignment is not occasional. It is the default operating condition.

What misalignment actually looks like

It shows up in environments that overload or under-stimulate without adjustment. In education systems that standardise instead of calibrate. In employment that rewards one narrow operating style and reads everything else as deficiency. In healthcare that runs on assumptions about self-report, consistency, and presentation that simply don’t apply. In therapy that applies frameworks without adapting them, sometimes for years.

And in assessments. The WHODAS. The Vineland. The Brown.

I have sat with people completing these tools and watched their faces. That particular expression, the one that says which version of me, which day, which context, at what cost and the question on the page is just: “Do you have difficulty with social interaction?”

That’s not overthinking. That’s accuracy trying to fit into a structure that wasn’t built for it. People either average themselves out, which hides variability. Or they answer from their best functioning, which hides the struggle. Or their worst, which looks inconsistent. None of those are wrong. None of them are a clean reflection of reality either.

So the assessment produces a report that looks clean, structured, authoritative. And the person it’s supposedly about sits there thinking: that’s not quite me.

Then the report goes onto a shelf. Or gets translated into generic strategies by someone who didn’t have time to read it properly. Or gets used to justify funding without ever being used to build actual understanding.

We are not in an information deficit. We are in an application failure.

There is more data, more frameworks, more tools than ever before. And the person in front of the clinician is still being met with something that doesn’t fit.

The burden always comes back to the person

Here’s the part that cuts deepest.

When misalignment isn’t named as the problem, the burden shifts. Every time. Back to the individual. Back to the family.

Non-engagement. Inconsistent implementation. High needs. Complex presentation.

The system reads disengagement as failure of the person. When it’s actually pattern recognition after repeated harm. Learned avoidance. A completely rational response to a loop that keeps costing you and returning nothing.

And autistic people are extraordinarily adaptive. That’s the irony nobody names. They adjust their communication. They override sensory needs. They rehearse responses. They compensate, translate, mask, anticipate. They become highly adaptive, just not in ways that are sustainable.

So when that capacity eventually collapses, the narrative flips again.

“You’re not coping.” “You need more therapy.” “You’re not engaging properly.”

When what actually happened was: prolonged forced alignment, until it broke something.

Every misaligned support attempt is not neutral. It actively reduces future access. The next appointment gets delayed. The referral goes unfollowed. Families stop pushing because they’ve watched what happens. The system counts that as low engagement. It’s actually the accumulated weight of being missed, repeatedly, by systems that were supposed to help.

The revolving door

Mental health services. Employment. Education. Specialists. The same loop in different rooms.

People go in looking for support. They come out carrying more.

Each attempt costs something. Time, energy, hope. A piece of how you understand yourself. After enough rounds, something quieter starts to happen. People begin to doubt their own perception. Lower their expectations. Stop asking for what they actually need. Disengage before they can be dismissed again.

That erosion isn’t just of trust in systems. It’s of trust in self.

When every interaction subtly delivers the message you are the problem, eventually that message sticks. Even when it’s wrong. Especially when it’s wrong.

And we keep arguing about autism, definitions, prevalence, language, identity, while completely sidestepping this. It’s easier to debate what autism is than to confront how badly systems fit people who have it. The first conversation is abstract. The second one requires actual change.

A word on lived experience

I want to name something carefully here, because it matters.

There is a tendency to treat shared lived experience as a shortcut to alignment. The logic goes: they get it, so this will work.

I’ve seen this play out both ways.

The best clinical encounter I’ve had, genuinely safe, genuinely calibrating, was with an ED doctor who was autistic and had ADHD. Not because of the label. Because of how they practiced. They didn’t force a template. They didn’t minimise. They didn’t make it about themselves. They adjusted in real time. That’s alignment.

And I’ve experienced the opposite, practitioners with similar profiles who were extraordinary harmful. Who assumed that shared identity meant shared understanding. Who skipped curiosity because they already knew. Who projected their own narrative onto mine and called it insight.

Lived experience can open a door. It doesn’t guarantee you’re in the right room.

Sometimes shared experience actually increases the risk of misalignment, because certainty replaces calibration. And certainty without calibration is where harm enters quietly.

The real marker of good support isn’t qualifications alone. It isn’t lived experience alone. It’s: can this person adjust to this individual, in this moment, with this complexity?

The gap we refuse to close

Diagnosis rates are rising. Awareness is everywhere. More people are being identified than ever before.

And alignment is barely moving.

We’ve improved detection. We have not improved fit.

What that means in practice: we’ve widened the front door to a house that’s still built wrong. More people walking in, hitting the same walls.

The NDIS is a microcosm of this. Reports are written to justify funding, not to track alignment. So what gets filtered out? That this therapy didn’t work. That this approach made things worse. That these strategies were a poor fit. Because documenting that honestly disrupts the narrative, risks the funding argument, raises uncomfortable questions.

So the system doesn’t learn. It resets. The same interventions get recommended. The same misalignments get recycled. Knowledge doesn’t accumulate, it fragments.

We are generating more reports and less alignment. And without alignment, reports don’t reduce pressure. They add to it.

What would actually change things

Not more tools. Better use of the ones we have.

Not more assessments. Assessments that reflect lived experience and get translated into something usable.

Not more therapy. Therapy that starts from an accurate understanding of the profile including co-occurring conditions, intersectional load, variability, what’s compensatory versus actual capacity rather than arriving at that understanding after years of painful trial and error.

Not more awareness. Systems that actually move.

Alignment shouldn’t be something people have to fight for. It should be the baseline condition of any system claiming to provide support. Right now it’s treated like a special request.

The loop, misalignment, adaptation, exhaustion, breakdown, blame, will keep running until systems are built to adjust to the person, instead of requiring the person to constantly adjust to them.

We know how to do better. We have the information. The failure is in the translation.

And people are paying for that gap with time, energy, and the slow erosion of themselves.

That’s not a service gap. That’s a harm cycle.

And it’s past time we named it as one.

There is a particular kind of impact that doesn’t announce itself. It doesn’t arrive in a single moment you can point to and say: there, that’s when it happened. It accumulates. Quietly, incrementally, over years of being needed without being known. Over years of being present without being seen.

I watched two shows recently that named this without naming it. Riot Women and the Norwegian series Pørni. Different countries, different languages, different life stages. The same slow erosion at the centre of both.

What struck me first, before the plots, before the dialogue, was the faces.

Joanna Scanlan, who plays Beth in Riot Women, does something that’s almost unbearable to watch once you recognise it. She holds everything her character has learned not to say in the set of her jaw, in the pauses before she composes herself, in the way her face almost catches something before it disappears. You can see who she was under who she’s become. Not in a dramatic, theatrical way. In the way that people carry decades of managed-down need without realising they’ve become unrecognisable to themselves.

Renate Reinsve as Pernille does something similar, but from a different point on the same timeline. Pernille is still inside it, still needed, still functional, still moving through the immediate demands of parenting and work and surviving but the cost of it is written in her body before she ever opens her mouth. She hasn’t arrived at Beth’s particular quietness yet. But you can feel her moving toward it.

Together, these two performances give you the full arc of something we don’t have great language for. Not depression exactly. Not burnout in the way that word gets used now, flattened into something manageable and temporary. Something more structural. The long-term effect of living in a role so completely that the person underneath starts to disappear not all at once, but in increments so small that by the time you notice, you’ve been gone for years.

Motherhood accelerates it. Not because motherhood is bad, but because it structurally positions you as essential without centring you. You are needed constantly and that need has nothing to do with who you are. It has to do with what you do. Your function. Your output. And when the primary relationship the world has to you is functional what you produce, what you manage, what you hold together then your personhood starts to operate on a kind of starvation diet.

Add the particular intensities of single parenting. Add menopause, which doesn’t cause this erasure but amplifies everything unresolved. Add the specific texture of middle age for women, where you stop being visible in the ways the culture previously organised around and discover there was never anything underneath that visibility that actually saw you.

What accumulates isn’t just tiredness.

It’s a corrosive kind of not-being-met that eventually turns inward. The things that used to fill you small joys, the sense of your own presence in a room, moments that belonged to you erode. Not dramatically. They just stop being available. And the demands that once kept you tethered, that gave shape to the day, start pulling in the opposite direction. The same things that used to anchor you begin drawing from whatever is left.

Until what’s left is very little.

You stop looking in the mirror. Not because you don’t care. But because what looks back contains nothing that feels like you. Only the exhaustion. Only the absence. Only the face of someone who has been pouring out for so long that the cup has gone dry, all that remains is the cracks of something that dried long ago.

That’s the part that breaks you. Not the big moments. The quiet, ordinary ache of it. The ache of not being held. Not touched. Not seen. Not wanted for anything other than what you can give. The ache of lying down at the end of a day fully depleted, knowing that tomorrow the demand will be the same and the return will be the same: nothing.

The self doesn’t vanish in those conditions. It gets suppressed. Compressed. Pushed further and further down until you go looking for it and there’s almost nothing to find. Not gone, just unreachable, offline, void. Muted by years of unmet need and the relentless forward motion of a life that never stops requiring you to show up.

And then you watch Beth’s face.

And you recognise it.

Not as a character. As a document. A mirror.

Motherhood does this. Middle age does this. Menopause doesn’t create it but it turns the volume up on everything already unresolved every year of being infrastructure rather than person, every moment of being needed without being known, every time you adapted and absorbed and kept going because there was no one to catch you if you didn’t.

Beth has arrived there. Pernille is getting there.

And what makes both performances land so hard is that neither actress performs this as tragedy. They perform it as ordinary. As an ordinary day. As just the texture of a life that keeps being lived regardless.

That’s the part that should stop us.

We talk about mental health. We talk, a little more now, about menopause. We talk about the pressures on mothers, on caregivers, on women in midlife. But we don’t talk about accumulation. We don’t talk about the specific damage of years of being met only in role and never in self. We don’t name what it does to a person over a long time the erosion of joy, the erosion of identity, the erosion of the ability to feel yourself present in your own life.

One show can be a story.

Two shows, in different languages, arriving at the same truth through different women at different stages of the same long process, that’s a pattern being documented whether anyone intended to document it or not.

What both shows are quietly insisting is that this isn’t individual failure. It’s what chronic under-recognition does to a person when there is no mechanism that returns care to the person giving it. When the cup is never filled. When the ache is never met. When touch, recognition, and being genuinely held remain things that happen to other people or don’t happen at all.

Beth needed someone to see her. Not fix her. Not advise her. Just witness her as a whole person who was still there, still worth knowing, still capable of being moved and of moving someone else in return. When Kitty gives her that, imperfectly, inconsistently, but genuinely the look on Beth’s face isn’t gratitude. It’s something closer to oxygen. To be seen, to be held, to be loved, just for being your imperfect self.

That’s not a high bar.

That’s the lowest possible bar.

And the fact that it hits with that force, that it lands like something rare and almost shocking that says everything about how far below that so many have been living.

We don’t always get a Kitty who recognises our love, our labour, we don’t all get a renewal through a lover, a friend. Someone who shows up or cares. We know what Beth’s story would have been if Kitty hadn’t showed up, not once but twice. How many of us linger on this edge, just waiting to be seen.

#Motherhood #UnmetNeeds #Menopause #Invisiblity #MidLifeWomen #RiotWomen #Porni #Pernille

Notes from a Hostile Planet: Book One - Inside An Autist’s Field Guide

Book One starts from a single premise: autism lives in the body first, and behaviour last. Everything that follows is an attempt to give that premise its full weight.

This is not a book about social skills or diagnostic checklists. It is a field guide to the autistic nervous system, its architecture, its logic, and the enormous physiological load it carries just to get through an ordinary day on a planet it was not designed for.

The book opens with the operating system: the fundamental difference in how an autistic brain processes and allocates energy, and why that difference makes almost everything cost more. From there it moves through the body system by system, the gut, hydration and kidneys, the autonomic nervous system, the sensory apparatus in its full complexity, connective tissue, specific body parts, the cardiovascular and immune systems, and builds toward the cognitive and regulatory chapters that bring it all together: inertia, empathy, executive function, memory, time perception, and the OCD loops that emerge when a nervous system is doing its best to keep the person safe.

The Load Model runs as a throughline. Load is not metaphor, it is measurable, cumulative, and physiological. When load exceeds capacity, regulation is not just difficult; it is mathematically impossible. This framework reframes autistic experience not as behavioural deficit but as a predictable consequence of running a particular kind of nervous system in an environment that generates disproportionate load.

Book One does not offer fixes. It offers an explanation, rigorous, embodied, and written from inside the experience it describes. The goal is that any autistic reader reaches the end knowing their body better than they did at the start, and knowing that what it does makes sense.

Book Two: Outside takes the same body out into the world. Coming Soon

Available Here https://amzn.asia/d/00cLQsYU

#Autism #Autist’sFieldGuide #AutismBook’s #AutisticAuthor #ReframingAutism #AutisticWriter #DisabledWriter #NotesFromAHostilePlanet #AutismFromTheInside