By convenor | Tue, 28/11/2023 - 16:42
boat wreck lying on mudflat

From the outset as Minister for the NDIS, The Hon. Bill Shorten MP, said (15/6/2022):

The NDIS will not fulfil the promise if it is the only lifeboat in the ocean for people living with disability.

Minister Shorten is increasingly concerned in relation to Autistic Australians needing NDIS support. He’s used this analogy repeatedly since then.

‘Only lifeboat in the ocean’: NDIS drowning as families seek support for children reports (30/3/2023)

Shorten said the NDIS was designed and created for those with the most profound impairments, not for everyone with a disability.

“When the NDIS is the only lifeboat in the ocean, we’re seeing the diagnosis follow the money,” he said.

“I’m not blaming people for trying to get support for their kids or support for their family. I’m not blaming allied health professionals who want to be able to treat someone with a disability.

“But what we need to do is make sure that if you are an Australian living with a disability which is not that serious or that profound, that there’s still support for you.”

and in

Minister Shorten seems to feel that autism is typically or often not a sufficiently severe disability despite the Australian Bureau of Statistics (ABS) regularly reporting that over 2 in 3 Autistic Australians have severe or profound disability. While the number of Australians who are diagnosed Autistic has increased significantly in recent decades, and with some milder cases being diagnosed: from 2012 to 2015 was the only period when increasing autism diagnoses were due to slightly more presentation of less-than-severe disability. The ABS latest report on autism from its periodic Survey of Disability Ageing and Carers 2018 says “68.9% (141,400) reported having a profound or severe core activity limitation, that is, they need help or supervision with at least one of … communication, self-care, [or] mobility”. Minister Shorten needs to appreciate that, even with the increased diagnosis rate, most [68.9%] Autistic Australians have severe or profound disability.

Many in the autism sector are disappointed by Minister Shorten’s approach, much like all preceding NDIS ministers, to autism. While autism has emerged as the biggest primary disability type in the NDIS (at 35% of all NDIS participants), none of the NDIS Ministers has even agreed to meet the recognised Disability Representative Organisation for autism.

Minister Shorten did not turn up to the meeting with A4 scheduled for 24/8/2023. Despite several reminders, his staff have not scheduled another meeting.

Since the introduction of the NDIS, many children are labelled temporarily with “Developmental Delay”, a condition that was described in the NDIS Act 2013. The problem is that they get early intervention for Developmental Delay; then at least 49% of those that remain in the Scheme have autism as their primary disability (and 35% still have unresolved disability at age 7 years).

Early intervention the NDIS provides for autistic children labelled with DD is not for their autism so it is not evidence-based. It is often suboptimal for autistic children which means poorer disability outcomes and higher long-term support costs for the NDIS.

And the NDIS is not the only “lifeboat” in the “ocean” of disability support sector; but the government’s systems fail to ensure Autistic Australians access other supports. For example, from very early on, Carer Allowance (child) was created to help support families of children with disability.

The following table compares the number of children getting Carer Allowance (child) (CAc) due to autism to the number of autistic NDIS participants in the same age groups. A4 has not requested CAc data since 2021.

Carer Allowance (child), reason is autism - June 2021

 

ACT

NSW

NT

QLD

SA

TAS

VIC

WA

Aus

0-6 years

171

5,300

126

3,712

1,708

383

4,668

1,229

17,297

7-14 years

917

21,438

470

20,707

7,433

1,744

22,964

5,547

81,220

NDIS: primary disability is autism - June 2021

0 to 6

248

7,124

148

4,257

1,795

431

5,197

1,587

20,788

7 to 14

1,325

23,869

568

17,125

8,622

1,513

21,159

6,782

80,972

CAc/NDIS

0 to 6

69.0%

74.4%

85.1%

87.2%

95.2%

88.9%

89.8%

77.4%

83.2%

7 to 14

69.2%

89.8%

82.7%

120.9%

86.2%

115.3%

108.5%

81.8%

100.3%

0 to 14

69.2%

86.3%

83.2%

114.2%

87.8%

109.4%

104.8%

81.0%

96.8%

A4 expects that there are many autistic children getting one or other benefit, but not both. Children diagnosed with autism are eligible for CAc but many families either do not know about it, or are denied it - are told (incorrectly by Mr Shorten’s Centrelink staff that) they are ineligible.

Government websites do not provide clear information about Carer Allowance (child) and how to access it. That make it a very difficult "lifeboat" to climb into. 

A4 estimates that 60-70% of Autistic Australians are NDIS participants (with autism as their primary disability). So the percentage for 0 to 14 year-olds should be in the range 145% to 167%, not 96.8% as shown above … if autistic children were more fully accessing CAc (which is a non-NDIS support). Since the NDIS abolished the HCWA Autism Advisors, their replacements (NDIS LACs and Early Childhood partners) seem to be not informing families about Carer Allowance (child) as they should. None of the advice from clinicians when a child is diagnosed with autism that A4 has seen in recent years even mentioned accessing CAc - government needs to remind clinicians about it. If Mr Shorten wants the autism sector to take him seriously, then he must ensure families of autistic children are informed about his other "lifeboats" and make sure his Centrelink staff provide accurate information when they are approached.

Recently, a rogue actuary on leave from his NDIS claimed increasing autism diagnoses are due to the NDIS primarily for financial gain. As there are fewer autistic children getting CAc than get the NDIS, these data indicate that it is unlikely that many people get their child an autism diagnosis for financial gain, since:

  • CAc has been going for a decade longer than the NDIS,
  • Is easier to access, and
  • Actually pays dollars.

By contrast, Mr Shorten’s NDIS imposed an especially cruel policy on some of the most severely affected autistic children. Under his leadership, his Agency imposed a policy that autistic children who need the most support have to navigate the most difficult pathway to access the support they need; they are sent to argue their case before the AAT in an adversarial process that lacks the expertise needed to judge such cases. For them, the NDIS is a very hard lifeboat to get into.

Mr Shorten, like the Disability Royal Commission, hopes that education systems will provide comprehensive alternatives to disability services for school-age autistic children. But they have yet to show evidence that this is realistic in relation to many autistic students, especially those with severe or profound disability, those who are often left out in an era where the advocacy pendulum has swung more to the side of self-advocates.

Also, Autistic students are not just autistic from 9am to 3pm on weekdays. It is unclear how a student with no algebra is included in a calculus class, or a student with negligible language be educated effectively in a senior English literature class.

The government managed to leave autism out of Australia’s Disability Strategy 2021-31 (ADS) . So now they are working on a National Autism Strategy (NAS).

We await the outcome for autistic NDIS participants from the NDIS Review … signs are not hopeful.

It’s time Minister Shorten stopped seeing autism and its representative organisations as the enemy and started collaborating on efforts to improve disability outcomes for Autistic Australians. But it’s not just Mr Shorten’s responsibilities, the NDIS and Services Australia (Centrelink), that must improve; all the areas relevant to the NAS need much more work than is currently planned.