'Profoundly irresponsible': How the NDIS is failing the autistic

Madeleine Ryan

I am autistic and much of the terminology that’s used to describe autism often feels confusing, and disempowering.

Although the subject is frequently in the news and being talked about the diagnostics coined by doctors, professors and scientists in relation to it are often disconnected from my life, and the lives of autistic adults and children. All the puzzling terms, labels and categories can make it harder for us to receive help when we need it and harder for the rest of the world to understand us.

response to Angela Shanahan’s misguided article

Heidi Brandis

In response to Angela Shanahan’s misguided article in the Weekend Australian, I wrote this to the editor of the paper last night:

Dear Editor

Hoping you can assist - I’m in a quandary as to which of Angela Shanahan’s myriad misguided, incorrect, offensive and ignorant comments to address first? (“On spectrum of needs, NDIS should axe ASD”, 26 May).

Let’s address each one:

On spectrum of needs, NDIS should axe ASD

Warning: it is best to not read the following. This article contains factual errors, prejudice and poor journalism. It is on this website as part of the history of autism in Australian media ... and to show the level of profound ignorance about ASD in much of the Australian community. For example, the claim below that "the vast majority are on low levels of the spectrum" is contrary to available data published by the Australian Bureau of Statistics showing most people diagnosed with ASD have sever or profound disability. She's a serial offender: see

In 2013 I wrote an Inquirer piece asking: What are the practical economic restraints on disability services in a society with an ever expanding notion of disability? Where do we draw the line? Who will and who won’t be eligible for assistance under the National Disability Insurance Scheme?

‘My son gave himself a concussion from banging his head. Yet he’s still “not autistic enough”.’

Jessie Burns

Last week, the National Disability Insurance Agency (NDIA) removed Autism ‘Level 2’ from its list of disabilities, which are “likely” to receive funding under the National Disability Insurance Scheme that is slowly replacing the Helping Children with Autism Package across Australia.

Autism screening tool may not detect the condition in some women

Rachel Moseley, Bournemouth University and Julie Kirkby, Bournemouth University

Diagnosing autism is expensive and time consuming, so a screening tool is used to filter out those people who are unlikely to be diagnosed as autistic. This is all well and good, but our latest research suggests that a widely used screening tool may be biased towards diagnosing more men than women.

Action Must Be Taken to Stop Bullying of Students with Disability

Stephanie Gotlib

Unfortunately, bullying of students with disability, including abuse and violence at school is not a new, unusual or unknown experience, writes Children and Young People with Disability Australia CEO Stephanie Gotlib.

Many in our community were rightly sickened by the footage which emerged recently of a young boy with disability being violently assaulted by peers outside a secondary school in Melbourne.

Defining moment for National Disability ­Insurance Scheme

Rob De Luca isn’t ready to speak with you yet.

The young, newly installed chief executive in charge of the $22 billion National Disability ­Insurance Scheme was adamant he didn’t want a public email when he took over the reins in August last year.

He uses a made-up first name, keeping the address off the books because he doesn’t want ­direct emails from “normal mums and dads, agency staff and participants”, according to one disgruntled staff member.

NDIS's 'very cold' attitude leaves parents of disabled boys outraged

The parents of two boys with disabilities say they were shocked with how the NDIS responded to their request for funding for basic equipment.

Hobart couple Michael and Jasna Baric are full-time carers for their sons Joshua and Lucas, who have Duchenne Muscular Dystrophy.

The condition means the boys' muscles are progressively degenerating and becoming weaker.

"The disease is degenerative; it won't get any better," Ms Baric said.

'They'll physically lose their ability to walk and use their body.

Community rallies behind Aussie family to give them new hope

THEY were going to have to give up their young son for the safety of the other children — but the generosity of strangers has given this family new hope.

Ally Foster

Living with severe autism

ONE Australian family were on the brink of making the most heartbreaking decision of their lives but an outpouring of generosity from hundreds of strangers has given them new hope.

Liz and Sean Whelan were faced with every parents worst nightmare: being forced to give up one of their children for the safety of the rest.

Mild autism cases are not the NDIS’s core concern

The Australian (editorial)

The following are the (unAustralian) views of The Australian newspaper's editorial staff. A4 rejects these views.

The National Disability Insurance Agency has made a prudent call in deciding that some autism sufferers will no longer qualify automatically for assistance under its $22 billion scheme. On Saturday, Rick Morton reported that officials are endeavouring to rein in costs by paring back the number of people with autism receiving funding packages. Among National Disability Insurance Scheme participants, 29 per cent have autism. Autism is the single biggest condition listed among the 30,000 children aged 14 and under. Of these, almost half are regarded as high-functioning with a “low level of disability”. However fraught, now is the time to resolve eligibility issues before the NDIS reaches full rollout in 2020, when it is set to serve 475,000 people.

NDIS bid to restrict access by rewriting rules on autism

A radical plan to alter the definition of autism will be the cornerstone of a push to restrict access to the $22 billion National Disability Insurance Scheme, which could see thousands of people with substantial support needs removed from the system entirely.

The agency in charge says the proposed redesign will dismantle the idea of an autism “spectrum” — an idea coming back in vogue globally — and place people into specific “subtypes” based on individual characteristics.

Autism advocates blast proposed 'cutbacks' to NDIS access

David Wroe

Autism groups have expressed shock and disappointment at reports the agency administering the National Disability Insurance Scheme is looking to cut the number of autistic people who are virtually guaranteed of qualifying for support.

Advocates said they believed the National Disability Insurance Agency was working on plans to rein in costs by changing the qualification criteria so that many people would have to be individually assessed to determine their need for support.

Autism to face cutbacks in NDIS as secret plan revealed

Rick Morton

A secret plan to restrict the access of autistic people to the $22 billion National Disability Insurance Scheme would prevent them from qualifying “automatically” for taxpayer-funded support as part of a sweeping overhaul to rein in costs.

The Weekend Australian has confirmed bureaucrats have been working on a strategy since late last year to pare back the number of people with autism receiving funding packages.

'It just gets debilitating': The NDIS families desperate for a better scheme

Dan Conifer

Sonya Ludlow is a strong woman. When you're bringing up seven children, resilience and thick skin are almost compulsory.

But the Adelaide mother was left feeling "absolutely awful" after a review of her seven-year-old son Samuel's funding National Disability Insurance Scheme (NDIS) plan.

"[The NDIS representative] more or less said, 'by my sixth child I should know how to be a parent and how to look after my children'," Mrs Ludlow said.


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