Submission on NDIS Independent Assessments to the Joint Standing Committee on the National Disability Insurance Scheme
“One act of betrayal can shatter a lifetime of trust.”
― Ken Poirot!
31/03/2021
Autism Aspergers Advocacy Australia
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Autism Aspergers Advocacy Australia, known as A4, appreciates your Committee providing us with an opportunity to comment on the Government’s plans to impose a so-called NDIS Independent Assessment regime on NDIS applicants and participants.
Basically, the NDIA’s planned implementation of its so-called Independent Assessments is an awful approach.
Most people in the disability sector have expressed concerns over the proposed changes. Disability representative organisations are unanimous in condemning the changes.
At 30% of NDIS participants, autism spectrum disorder (ASD) is the most common primary disability type in the NDIS. The voice of autistic people is essential in any credible co-design or consultative policy or planning process. This Government chooses to ignore essential voices relating to autistic people, their representatives, clinicians and associates generally.
There is a place for the NDIA to fund diagnoses and functional assessments for people with disability who do not already have valid assessments. But the NDIA needs to co-design the process with DROs.
For some reason, the NDIA decided that diagnoses cannot be used in deciding NDIS eligibility. Instead, it will invent a new “functional assessment” scheme. There is no evidence base for such a scheme in relation to autistic people. Inevitably, such a scheme will deliver unfair resourcing outcomes for autistic people.
The NDIA claims that the whole disability sector is misguided and/or bases its views on misinformation about its so-called “Independent Assessments”. They say they are right and everyone else is just wrong. The NDIA has no respect for the enormous experience of disability representatives.
The following responds to the joint submission DSS and the NDIA sent to your Committee.
Their submission claims they “are actively committed to seeking feedback on independent assessments and other reform proposals”. This claim is designed to mislead: they only want people to provide feedback so they can tick their “consultation” box. They just ignore or misinterpret feedback that is critical of their plans. This is not a genuine consultation.
The DSS and NDIA submission claims incorrectly that their unilateral “changes will mean that the NDIS will more closely resemble the model originally recommended by the Productivity Commission”. However,
- the Productivity Commission did not originally propose an NDIS, the proposal came originally from the disability sector, and
- few people other than the Minister and the NDIA officials regard the proposed model as anything like the “model originally recommended by the Productivity Commission”.
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The Productivity Commission warned:
… the assessment process should include aspects of learning and applying knowledge, and community and social participation. To do otherwise, might mean the support needs of some individuals were systematically overlooked: Many in the Autism population frequently experience problems with assessment instruments that overestimate their abilities and underestimate their need for assistance. …
The Productivity Commission report failed to mention explicitly significant behavioural needs of many people with disability, especially many autistic people.
In its report, the Productivity Commission expected (Table 1.1) that just 9% of NDIS participants would have “autism” as their primary disability. Apparently, the NDIA subsequently expects the final figure for autism as primary disability will be 20% while the current figure is around 30%. The number of autistic Australians increased from an estimated 64,600 in 2009 (the data the Productivity Commission used) to 205,200 in 2018, more than threefold increase over just 9 years. The NDIS plans made no provision for such an increase in numbers.
The NDIS was originally intended for about 400,000 people with disability but now expects around 500,000. While the NDIA has recognised that it will need to support substantially more (around 25%) people overall than originally thought, the Government has not increased the NDIA’s estimated budget accordingly. The Government intends to cut NDIS support per individual by 25% on average to maintain its NDIS $22 billion annual budget. This is unfair to NDIS participants.
A4 sees the initial NDIS as a substantial improvement over previous state-based disability supports. More autistic people with severe or profound disability now get support than before. Regrettably, Tiers 1 & 2 of the Productivity Commission’s NDIS design did not eventuate for autistic people who are deemed ineligible for Tier 3 or who do not apply for the NDIS. Most autistic people who are ineligible for an individual NDIS Plan are worse off so the Government’s promise that no one would be worse off was broken.
The promise that no one would be worse off will be broken further with the Government’s so-called Independent Assessments regime.
A4 agrees with the former Minister against Disability, Mr Stuart Robert MP, that the NDIA’s current scheme implementation delivers many unfair outcomes. We agree that NDIS existing eligibility and planning outcomes vary substantially; results are sometimes unfair.
We disagree with the Government over the reasons NDIS outcomes are unfair. In our view, unfair NDIS outcomes result from the NDIA’s poorly trained staff, unfair policy, misguided practices and willful ignorance of ASD. The NDIA refuses to address the concerns of the ASD community.
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Rather than a fair and effective disability support system, the former Minister against Disability wanted to wind back disability supports to pre-NDIS levels or lower.
The Productivity Commission was quite clear that such an approach will deliver poor outcomes for people with disability and will cost the taxpayer substantially more in the long run. It would be poor economic practice, but this Government rejects that advice.
The NDIA’s current NDIS implementation is unfair because:
- Some people with disability cannot access or afford clinical assessments that the NDIA demands as evidence of disability,
- The quality of disability assessments varies between clinicians and with people’s access to clinicians, and
- NDIS delegates vary in their approach and ability to comprehend assessments they receive.
The so-called “Independent Assessments” do an extremely poor job of addressing these issues.
Introducing so-called “Independent Assessments” (that are not really independent) and restricting access to independent reviews of eligibility and planning decisions will make the NDIS even more unfair.
A section in the joint DSS and NDIA submission to the Joint Committee says:
4. Breadth of assessment tools.
Independent assessors will use internationally recognised, evidence-based and consistent tools to provide a current and complete assessment of a person’s functional capacity. The assessment tools used during independent assessments will be aligned with the World Health Organisation’s International Classification of Functioning, Disability and Health, and the activity domains described in the NDIS Act. These are communication, social interaction, learning, mobility, self-care and self- management.
As indicated in a letter to the NDIA CEO, there are no “internationally recognised, evidence-based and consistent tools to provide a current and complete assessment” of an autistic person’s functional capacity. Previously, your Committee recommended that the NDIA develop an appropriate tool and stop using the PEDI-CAT of autistic children. The NDIA ignored your Committee’s recommendation. To this day, the NDIA continues its misuse of the PEDI-CAT for autistic children, a tool whose authors recognise is not appropriate for ASD (which is why they developed the PEDI-CAT ASD hoping it will work better for autistic people). The PEDI-CAT ASD cannot yet be described as “internationally recognised”.
The NDIA cannot claim to have “internationally recognised, evidence-based and consistent tools” for the functional assessment of autistic NDIS participants.
The WHO’s International Classification of Functioning, Disability and Health was not co-designed or even discussed with autistic people or their representatives.
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While “communication, social interaction, learning, mobility, self-care and self- management” are all areas of divergent “ability” for autistic people, this list omits the key diagnostic area of behaviour that is central in diagnosing and addressing the needs of autistic people. Functional assessments that omit/ignore behavioural aspects of disability simply cannot be fair and equitable for autistic people.
Currently, there are autistic NDIS participants whose support for their disability-related behaviour exceeds $400,000 per year (sometimes after an AAT review was required). The NDIA’s functional assessments that will not even consider behaviour will be seriously unfair; the assessments will ignore major parts of their disability, so will deny these people the substantial support they need.
Australian government and its laws have an unacceptable approach to disability- related distressed behaviour. Since Purvis vs NSW, Australia’s legal system judges the distressed behaviour of a person with disability, for example an autistic person, the same as aggressive/violent behaviour of a person without disability behaving entirely maliciously. The distressed behaviour of an autistic person whose fight-or-flight response to anxiety, a distressing environment, or frustration exacerbated by massive social and communication failure, is regarded the same as someone without disability and whose only motivation for aggressive or violent behaviour is their intent to harm others.
Frankly, the fairest response is to judge these systemic abusers (legislators, judges, magistrates and prosecutors) the same as people who, for no reason at all, abuse, victimise and bully vulnerable people, especially autistic people. No attempt should be made to understand why these abusers treat vulnerable people so badly. Ignorance of disability is no excuse; they are just bad people in powerful positions wilfully imposing an abusive system on vulnerable people.
Functional assessments that ignore behaviour are not fair assessments. They are not comprehensive. They will lead to unfair eligibility and planning outcomes in the NDIS for autistic people (and others) who need disability-related behaviour supports.
The NDIA’s enthusiasm for these “assessments” come in part from what they regard as excessive levels of autism among participants. At this stage, over 30% of NDIS participants have autism as their primary disability. At their last public comment on the subject, the NDIA said they still expect to get down to 20% autistic participants. The NDIA plans to impose assessment tools that ignore a major functional aspect of autism, a major disability type in the NDIS.
We do not accept the NDIA’s judgement about what is fair. We have few “independent reviews” of NDIS plans to base any assessment of “fairness” on. The NDIA’s apparent measures of “fairness” are extremely simplistic. And they exclude individual goals, which are meant to be central to the NDIS.
Most likely what the NDIA and the Government says is “unfair” is very different from what the disability community says is unfair.
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There is no prospect of fixing problems where people do not agree on what the problems are. In this instance, the Government and the NDIA refuse to even discuss the issues to be addressed.
We are keen to make the NDIS fairer for participants but our view of existing NDIS unfairness differs from the Government and NDIA view.
- The Government regards varied levels of funding as “unfairness”.
- A4 regards unfairness as arising from the NDIS preventing provision of reasonable and necessary disability support for individuals.
In a recent media release, the former Minister against Disability cited funding differences for individuals in Launcerson compared to Hobart as examples of NDIS unfairness. A4 does not have access to individuals’ funding, however from the data visible to us funding differences in Tasmania are shown in the following chart.
Tasmania - NDIS average plan $s
(Bar chart image showing plan values across age groups and regions: TAS North, TAS North West, TAS South East, TAS South West)
The differences may not be as extreme as the former Minister indicated. The only difference that is anywhere near double is between Tas SE and Tas SW for 19 to 24 year olds, or between those under 18 years old and those over 25 years old.
People with disability need independent reviews to get fair NDIS funding outcomes. For example, Mr McGarrigle had to take his matter to the Federal Court, a place few people with disability are able to go, to get a fair NDIS plan.
The NDIA decided unilaterally that it will use information from its so-called Independent Assessments in a secret process that determines an individual’s NDIS funding. The Agency has not discussed this with the disability sector.
Clearly, this breeches the NDIA’s own Service Charter. The Agency cannot be trusted.
The Government’s planned changes to the NDIS will result in a partisan NDIS; support for the NDIS cease to be bipartisan.
31/03/2021
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