ALACH, Mrs Tasha, Director, Therapy and Clinical Services, Autism Association of Western Australia [by video link]

AVERY, Ms Nick, Chief Executive Officer, South West Autism Network [by video link]

TAYLOR, Dr Lauren, Clinical Psychologist, Autism Association of Western Australia [by video link]

[13:29]

CHAIR: I welcome representatives of the Autism Association of Western Australia and the South West Autism Network. Thank you for appearing today. Do you have any comments to make on the capacity in which you appear?

Dr Taylor : I am a clinical psychologist who oversees a youth diagnostic clinic here at the Autism Association of Western Australia, and I am also a lecturer in autism diagnosis at the University of Western Australia.

CHAIR: Do you wish to make some opening comments?

Mrs Alach : Dr Lauren Taylor will present our opening statement, and I will add a few points in relation to early intervention in the consultation paper, which is based on the functional assessment. I'll hand over to Lauren to start; then I'll make the last few points.

CHAIR: Thank you; go ahead.

Dr Taylor : At the Autism Association of Western Australia we have significant concern about the potential impact of independent assessments on the lives of people with autism and their families. There are several reasons for this, which include the adequacy of the suite of tools that is supposed to be used for the independent assessments, the validity of the use of these assessments to determine disability and estimate funding budgets, the competence of the professionals who will be administering and interpreting the results of these assessments, the lack of transparency of the pilot studies that have been conducted to evaluate the independent assessment process, and the stress that independent assessments will place on people with autism and their families.

By default, a diagnosis of autism spectrum disorder means there is functional impairment. One of the core criteria that must be addressed when a person is diagnosed with autism is that features of autism cause clinically significant impairment in social, occupational or other areas of functioning. Therefore functional impairment is determined at the point of diagnosis and is implied ongoing as autism is a pervasive and life-long neurodevelopmental disorder.

The NDIA has recommended a suite of tools that will be used to inform the independent assessments. We believe that these tools are too generalised to work well for the full range of people with disabilities that will need to access the scheme. For example, several are heavily weighted to mobility impairments rather than the global social communication difficulties that characterise autism.

In addition the measures that are being proposed are not fit for purpose. These measures were designed to be used as clinical tools that identify areas of strength and weakness in a person's every-day functioning which will provide intervention targets and areas of skill development. Instead the way in which these measures will be used in the independent assessment will reduce a person's entire life and all of their strengths, interests, likes, dislikes, challenges and needs into one global indicator function which will then be used to determine a person's need for funding. We have not seen any evidence, either from the NDIA or more broadly within the research literature, that indicates that any one score on a measure of every-day functioning can be used to estimate funding budgets.

We also do not yet know how each of the measures will be used; that is, will the assessors consider impairment in different areas of function or at a global level? This is critically important for people with autism who may have an uneven profile of strengths and difficulties. For example, they're more likely to have significant impairment in communication and social interaction than other areas like mobility. A global rating may misrepresent the actual function for these people. Regardless of the way in which we use these tools, they do not give us an indication of disability; that is, the barriers for social, economic and community participation on an individual basis.

While the assessments certainly let us know how capable a person is in terms of their ability to undertake everyday tasks, they do not link function to areas of disability. Therefore the implications of functional impairment—for example, in autism, the way in which poor conversation can create a barrier to participating in job interviews, which then affects a person's ability to sustain employment—are not captured within the proposed measures. The indicators of function that are being proposed do not adequately capture the barriers that create disability in people with autism; nor do these indicators consider the fact that the same level of functional impairment can result in differing degrees of disability for different people. Therefore it's impossible to use any simple score or algorithm to establish support or funding need.

It's also crucially important to recognise that the interpretation of these assessments requires extensive knowledge and clinical skills. We are concerned that the independent assessors will lack knowledge about each and all of the disability groups for which they will be required to conduct independent assessments.

While the assessors will be trained on each measure, one-day training is insufficient to understand the way in which the questions and additional points can be used to gain information about the invisible supports and microstructures that are being used to support a person with autism. The training is also not sufficient to understand the nuanced way in which a person with autism and their family might respond to some of the questions. It is only people who understand autism and who can interpret responses through an autism lens who will capture this.

Furthermore, the functional assessments don't account for the impact of maladaptive behaviour or behaviours of concern on function. Many people with autism, even those who appear very able, function well until something unexpected happens. For example, when we alter our routine a person's function can change and, in some circumstances, this can have an extreme impact on a person's functioning.

While families carefully structure the environment to prevent the unexpected events that impact function, often they do this unconsciously, through many years of experience with their family member. These invisible supports are not made explicit within the functional assessment tools and require careful probes to extract information about the ways in which families are creating supports to ensure that the family manages well across all environments. We cannot truly understand a person's functional capacity unless we know how they cope when the scaffolds are removed.

The results of the pilot studies that have evaluated the independent assessment process have not been made available to the public. This is contrary to principles of transparency. It also allows the agency to cherry-pick the findings that support their agenda without scrutiny or independent research. This means that the research driven by the NDIA is inherently biased. The results may be in conflict with the wider body of independent peer-reviewed research and the methods may not involve acceptable standards of research rigour.

We are concerned that the proposed implementation of independent assessments will have a detrimental effect on families, many of whom are already struggling to navigate the complexities of the NDIS. The independent assessment process will mean that people with autism and their families will have an ongoing battle to prove that they still need support. Historically, families of adults with autism have had security with regard to funding, particularly for those people whose needs are not materially going to change. These families now face the prospect of perpetual uncertainty about whether their family member will continue to access the reasonable and necessary supports that they need to maintain a good quality of life.

Families are distressed by the prospect of never-ending assessment, and worry about who will advocate for their family member when they are no longer able to do this themselves. Important life-changing outcomes rest entirely in the hands of a clinician who is unknown to the family and who conducts a brief assessment, the outcome of which a family cannot check for accuracy. This family stress is only compounded as parents themselves are ageing, have disabilities or other vulnerabilities such as speaking English as a second language. This is not a process that respects or empowers people with autism or their families.

In summary, we have significant concerns about the proposed independent assessment process. The tools that will be used are too general to cover every disability group. The assessments are not fit for purpose, in that they were not designed to provide an estimate of funding budgets. A global indicator of functioning used in this context is both inaccurate and misleading because it does not adequately capture the barriers to social, economic and community participation which contribute to disability.

The independent assessors will not be equipped with knowledge about every disability, and understanding a person's function requires an intimate knowledge of the person, their environment and the invisible supports that are constantly being implemented to ensure that the person has a good quality of life.

The ramifications of the proposed independent assessment process are severe and long-lasting. There is currently insufficient evidence to support the premise that this approach will lead to valid, consistent and equitable decision-making. Independent assessment should not be introduced until it can be clearly demonstrated that this is a valid method of determining reasonable and necessary supports for people with autism.

Mrs Alach : I have four points, just to follow on from what Lauren said. We are able to provide, if required, at a later date the examples of the limitations of each of the assessments that have been chosen to determine level of need through the functional assessment such as a Vineland-3. We will be able to provide examples of why they don't work.

I want to make a few points in relation to the consultation paper on interventions for young children on the autism spectrum. This paper is heavily weighted on functional assessment. Based on this, the paper goes on to create a table that uses the information from the functional assessment to allocate funding and recommended supports.

Again, this paper was rolled out on the assumption that functional assessments were a valid tool. There are multiple flaws in this paper and rolling out this framework will create significant distress. As we are reviewing the functional assessment, I strongly believe that we need to put a hold on that consultation paper at the same time.

The other point I wanted to make was around early childhood intervention supports in the use of functional assessments. Autism, unlike any other disabilities that are diagnosed at birth, is not diagnosed, on average, until three to four years of age. A functional assessment for young children who have not yet had a diagnosis or identified that they need a diagnosis of autism will be delaying their access to targeted early intervention and will negatively impact on the trajectory of that child's disability.

It unpacks all of the great work done in the autism early intervention sector over the last 20 years and it will simultaneously increase the age of diagnosis. Increasing the age of diagnosis is well researched to be associated with the development of other challenges and multiple issues that will further compound the disability.

I have two more points in relation to that. Funding bands have been established in relation to early intervention based on the functional assessment. Again, these need to be removed and there needs to be further investigation in relation to this paper. The funding bands that have been identified are the lowest bands that we've seen in more than 20 years. Families have always accessed a minimum of $21,000 in early intervention, especially if they have an autism diagnosis, because it's already been identified that they have significant delays in their development across a number of areas. Generally, under block funding, families were getting a minimum of $21,000. We find it unbelievable that the funding bands have been developed based on the interpretation of a functional assessment, which again has not been validated.

I won't go into the other points around early intervention, but I would like to say that we've been involved in multiple consultations regarding the functional assessment. It is so disappointing that, having regard to all of the energy and time that we put into providing consultation in relation to the functional assessment, and now in relation to the consultation paper on early intervention for young children on the autism spectrum, this information has not been used to update and evaluate the rollout of functional assessments.

One week after we provided multiple consultations, it was announced that the independent assessments were being rolled out. This is clear evidence that those consultations were not listened to and not used in making changes to the rollout of that strategy.

Lauren touched on the fact that we work with very vulnerable families, especially in early intervention. We have a lot of families that come from very disadvantaged communities. English might be their second language. We have to provide significant support to those families just to access NDIA supports. Adding another level of assessment, like a functional assessment, will disadvantage and be unfair to those families in that cohort. Also, for the families that aren't disadvantaged, there is the level of stress for families who have young children with autism, who are already going through a diagnostic assessment and already need significant support to access funding through NDIA. To add another barrier to accessing support, such as a functional assessment, will have a significant impact on the families who need to have their support built and their capacity developed to be able to support their child.

The other thing in relation to the functional assessment is that, when you look at the table in the early intervention paper, the levels of need and the funding and supports attached to those have not taken in at all the context of the environment that child is participating in and the level of support the family needs. It has been completely independent of all the best practice early childhood research that looks at the function and the skills of the child but also takes into consideration their environment, the supports available to that child in that environment and also the capacity of the family to implement those interventions to be able to support the integration of those strategies across that child's day. Again, it is going backwards in relation to best early intervention supports for children with autism.

CHAIR: Thank you. Ms Avery?

Ms Avery : Thank you. SWAN is a disabled persons and families organisation on Wardandi Noongar land in regional WA. All staff and board members are either people with disability or family members or both. I am an autistic parent of two autistic young adults who were both diagnosed as toddlers. All three of us are NDIS participants with self-managed funding. I am also the only WA-based and regional member of the independent assessments working group through the NDIS participant engagement project.

SWAN currently delivers two NDIS information linkages to the passive building project and provides advocacy funded by a private benefactor. Much of the support we provide involves supporting people to seek a section 100 review of reviewable decision requests. We also assist with seeking NDIS access, preplanning, implementation and self-management of funding, in addition to information and support around mainstream and disability services.

Half an hour ago I received an invite for one of our kids to participate in the independent assessments trial, as did the SWAN president and another board member. We will all be declining to participate. We are deeply concerned about compulsory independent assessment and many other proposed changes to NDIS processes.

Since making our submission to the joint standing committee, further information has been released which we feel is important to raise with you. Between 20 and 26 April, the NDIA has released several new operational guidelines in addition to the autism consultation paper released on 31 March. It's also important to note here that the autism consultation paper was only given four weeks initially for us to give feedback on; whereas the previous consultation papers allocated three months. It has now been extended to six weeks.

The new section of the operational guidelines titled 'Would we fund it?' makes a deeply concerning statement on what NDIS doesn't fund. The introduction has a new clause which states:

We would typically not fund a requested support if:

… it provides the same benefit as another support already funded by the NDIS in your plan.

This new statement has been used throughout the 'Would we fund it?' operational guidelines as the primary reason for denying many requested supports. This change prevents holistic disability support and reduces the impact of capacity-building support. For example, funding for assistive apps and sensory equipment recommended by an occupational therapist to improve emotional regulation and executive functioning is denied in case examples due to being a duplication of funded occupational therapy.

Assistive apps and sensory equipment build capacity on a daily basis; whereas occupational therapy is typically funded, at most, one hour per month or per fortnight. These add-on capacity building and holistically-funded multiple supports addressing the same goals and needs over shorter periods can reduce the need for long-term funding of occupational therapy. So it's a false economy.

Where the case examples provided in the 'Would we fund it?' operational guidelines describe autistic participants, every requested support is denied. More alarming is the denial of funding for the cost difference between group and private swimming lessons. That is in both the autism consultation paper and the new operational guidelines.

Autistic children are at three-times higher risk of drowning than their non-disabled peers. Many autistic kids are also runners. In my own family we have direct experience of this. Both our kids were runners and both were drawn to water. They would run into water and either keep running or sit down under water and make no attempt to resurface. We lived next to a river for seven years and then moved to a farm with unfenced dams. Prior to NDIS we paid for private swimming lessons year-round for two kids for 10 years to keep our kids alive. Each time we attempted group swimming lessons they lost skills as group swimming lessons were too overwhelming for them to learn in.

My husband and I regularly skipped meals in order to do this. We went into debt of $250,000 to pay for 10 years of weekly speech therapy to help two non-speaking autistic kids learn to communicate, eight years of weekly tutoring and five years of weekly psychology, in addition to year-round private swimming lessons—all for two kids.

We were in a position to be able to acquire this debt and we will be paying it off in the foreseeable future. Because we paid out-of-pocket for these and other supports, the long-term cost to NDIS for supporting our kids is substantially less than it would be had we not done this. Both are able to communicate verbally and in writing. They graduated from high school and completed qualifications at TAFE, with support.

NDIA is proposing to drastically reduce funding for autistic kids in the new autism consultation paper, closing on 14 May, and states that many children will benefit from short-term early intervention that is delivered through their early childhood partners and may never need to become participants of the scheme.

As Tasha and Lauren stated, autism is a lifelong disability. It's not cured by 12 months of early intervention therapy. For children aged 0-to-6 years, the four levels of funding proposed are between 4,000 and 35,000; and for children aged 7-to-12 years, the four levels of funding dropped further to between $2,400 and a maximum of $21,000. These figures are inclusive of children who are non-speaking, unable to communicate their needs and have self-harm and high behaviour support needs.

At the current NDIS price guide rate, $2,400 equates to a maximum of 12 hours of therapy. By the time assessments and NDIA-required reports have been written, this will equate to less than one therapy session for two months, not including any other support needs the child may have. Alarmingly, the autism consultation paper goes on to state that it is expected that each consecutive plan will reduce by a further 40 to 45 per cent each year if the child is able to remain in the NDIS beyond the first 12 months.

I corresponded with Professor Andrew Whitehouse, the project leader of the autism PRC report referred to in the NDIS autism consultation paper. At no time did Professor Whitehouse or the autism PRC indicate to NDIA that autism is anything other than a lifelong disability requiring support or that many autistic children would only require up to 12 months of early intervention and not enter the full scheme.

In order to be eligible for the NDIS, we must provide evidence of permanent disability. Autism level 2 and 3 are currently on list A for eligibility, indicating that the NDIA recognises that this is a permanent disability requiring substantial lifelong support. The diagnostic criteria and support needs are unchanged, yet NDIA states in the autism consultation paper that many will only require support for up to 12 months.

In south-west WA we already see very low funding amounts and cut-and-pasted plans, often with another child's name pasted from one plan to another. Autistic children aged 0-to-6 are typically funded 17 to $23,000 and, until recently, with s100 reviews, this was often increased to between 40,000 and $80,000. Autistic children aged 6-to-12 years are typically funded 5,000 to $9,000. Until recently, with the s100 reviews, this was often increased to between 20,000 and $80,000. $5,000 covers one hour of therapy per fortnight.

Looking at the autism consultation paper, NDIA is proposing to further reduce planned budgets for autistic kids in this area by 50 to 75 per cent. Please note that autistic children and teens in south-west WA are seriously underfunded in comparison to other areas of Australia.

In recent months, the NDIA has made much of the new principles of fairness. The former minister spoke on more than one occasion about an apparent disparity of plans between wealthier participants in wealthier suburbs and those from less wealthy suburbs. How can it be fair to make such substantial cuts to support available to participants ensuring that only those with the financial resources available will be able to achieve their goals?

Since early 2021, we have seen a drastic increase in the number of people seeking support from SWAN to submit a s100 review of a reviewable decision request due to insufficient funding. Where participants have undergone a functional capacity assessment funded through their plan, the recommendations in these reports are now being ignored.

We are also seeing a major difference in the outcomes of s100 review requests compared to 2020. Participants are providing the same evidence for these requests as they were in 2020. However, the evidence is now being ignored. People are repeatedly told that their requests are not reasonable and necessary and are referred to other mainstream supports.

A year 12 education support centre student was funded only $3,000 for finding and keeping a job rather than school leavers employment support. The s100 reviewer told the parents to take their child to Centrelink for a job-capacity assessment to gain access to disability employment services. He also stated that he would only be funded if the Centrelink assessment found him to have no job capacity. It is clear that the funding cuts planned through the introduction of independent assessments are already starting.

We have learned in the last fortnight that Connect, one of the organisations contracted by NDIA to provide independent assessments in south-west WA and owned by ACM, contracted to provide LAC services in south-west WA, will co-locate with the LAC offices. Both the Bunbury and Busselton offices are open plan, and this will mean that LACs will sit side by side with independent assessors. That is a deeply concerning conflict of interest.

NDIA also released a media statement on 23 April in an effort to counter witness statements made at the joint standing committee hearing last week. The statement claims that there are no proposed caps for individual plans and eligibility criteria will not change under independent assessments. However, both the autism consultation paper and the new ILO operational guidelines stipulate funding caps. The eligibility lists will be removed under the proposed changes and people on list A for eligibility will also be required to pass an independent assessment in order to gain access to the scheme.

There are multiple other misleading statements in the media release, which we are coming to expect from NDIA. We are increasingly finding that NDIA is the least reliable source of information on the proposed changes to the scheme, and trust in the NDIS is at an all-time low.

CHAIR: Thank you, Ms Avery. Thank you all for your comprehensive remarks. I suspect you've answered many of the questions we had, but I'll go to Senator Brown.

Senator CAROL BROWN: Thank you very much for your comprehensive opening statement. There was an offer to table some information around the tools that have been selected. It would be very helpful to the committee if you were able to do that for us.

Mrs Alach : We can definitely table information and also give you examples of where those assessment tools have been used. For example, one of our young children in early intervention had an assessment by the practitioner in the ECEI gateway. The child was assessed on the Ped-3 and was also assessed on the Vineland. We knew this child had significant challenges and it was impacting their participation across multiple environments. The Ped-3 showed that this child had no functional impairment; the Vineland showed the child had significant impairment. The diagnostic assessment also outlined that the child had significant functional needs.

We can give you some examples of where those assessments have been used and how they provide conflicting information. We can also give you examples from our own diagnostic clinic where we've used a number of those tools, including the Vineland. If our skilled clinicians did not ask for further information in relation to how those questions were answered by the person with autism, they would have had a different outcome on that assessment tool. We can highlight that the use of those assessments needs to be delivered by a very experienced clinician who has extensive experience in autism and is able to use that tool for the purposes required. Also, in relation to vulnerable families, I would like to include information around how those questions can be interpreted by people with English as a second language.

Dr Taylor : I think some practical examples of this might be on the Vineland. For example, it asks questions about does a person have a job? That person with autism could answer that in a black and white way, as a yes or no question. However, what that assessment doesn't consider is the ability of the person to get to work independently, how much they're supported in the workplace—to support their communication and the way in which they're supported so as not to come into conflict with other individuals in a workplace environment. Another practical example from a childhood setting might be questions that ask a parent about whether their child plays with other children. Again, that can be taken in a very literal way. However, what we know about autism is that kids are often playing alongside other children and families might not have noticed or observed that. Quite specific prompts are needed to elicit information about the way in which a child plays with other children. There are other examples, if we went through each of the assessments at an item-by-item level.

Senator CAROL BROWN: Thank you. I'd appreciate that information. Autism associations have mentioned in submissions the damage that could be done by forcing people to go through another assessment process, and previous submitters have also highlighted the risk of self-harm among autistic people as a result of independent assessment. Is this something that you've also identified?

Mrs Alach : There are two things related to that question. We've set up a youth clinic, because we want to be able to support people who possibly have autism to get a comprehensive diagnosis that provides evidence that that person has autism and that it's pervasive and it impacts their ability to participate across contexts. A lot of these people that we're assessing are at the age of around 13 to 25. Because they haven't been identified early that they have an autism spectrum disorder, all of the supports that they've been accessing have been generalist and haven't identified the underlying neurodevelopmental disorder. So what's happened is a lot of these people have disengaged from society—they're not going to school, they're isolated in their room, they are self-harming—and they are extremely distressed when they come to us because they haven't had the right support that gives them the capacity to engage in the community. Once they get the diagnosis, we are then supporting them to transition into NDIA. We also have lots of data from our clinic to show the significant barriers these individuals are facing to be able to then get funding through NDIA, even though they have a comprehensive diagnostic assessment. So, yes, it's twofold. We're diagnosing people that should have been diagnosed a lot earlier.

I wanted to highlight that there are significant challenges for these individuals but also highlight that, if we are implementing the level of assessment in early intervention, we're at risk of having more people getting a very late diagnosis of autism and having significant correlative conditions such as mental health conditions, the development of an intellectual disability because they haven't been able to access early intervention, because of all of the assessments that are now required for a person to access intervention early. I don't know if I answered that question in relation to—

Dr Taylor : It was about stress on people and families. For a person with autism, because their core challenges are around social communication and interaction, even facing one assessment can be incredibly stressful for that person and their family. Often those high levels of stress and distress are associated with behaviours that can be challenging for the family and the young person, such as self-harm or self-injurious behaviour.

We're likely to see, coming up to initial assessment—for people who've already had an enormous amount of assessment through their lives—high levels of anxiety, which are then manifest in behavioural difficulties like self-harm. That might reduce after the assessment has been completed, but coming up to the next assessment we're going to see that same high level of anxiety and, potentially, behaviours of concern and behaviours that are really difficult for the family. We also see stress, distress and anxiety in families who are already using the scheme.

Senator CAROL BROWN: Thank you for that. We now know that the new minister has pressed pause on independent assessments while the pilots are being completed. Has the minister gone far enough or what would you like to see the new minister do?

Mrs Alach : We don't understand why we have even gone down that pathway. The NDIA was built on a concept of what's reasonable and necessary for that individual. We feel like we're moving further away from that. We understand that there is an unfinished pilot for the functional assessment. However, even though we're looking at this pilot there is no evidence to support that once you have a functional assessment, that determines that person's capacity, you're able to apply that to a funding level or that it can be used to identify access and eligibility for the scheme.

We feel that we need to look at different ways of looking at what the issue is around access and eligibility. We understand that 31 per cent of participants in NDIA have an autism spectrum disorder. We would like to be more engaged in consultations looking at a solution, to be able to support NDIA in access and eligibility. Instead, we're spending hours and days responding to consultation papers that have been developed by people who have limited understanding of disability. Some of the strategies that have been implemented in the consultation papers, I think, from my own experience, have been developed by actuaries who have developed models from injury management and applied them to disability without an understanding of disability as an underpinning framework for the decisions that are being made.

We also strongly believe that the early intervention review needs to be put on hold. We are already supporting significantly stressed families looking at the early intervention consultation paper. They are already extremely distressed looking at the information that's been outlined in that paper. That needs to be put on hold while we deal with the issues around a functional assessment. I don't know why we're investing time in looking at the functional assessment as a tool to identify eligibility and access. We need to engage families, we need to engage people with disabilities and we need to engage advocacy organisations and disability providers to look at how we address the issue of access and eligibility. This is so we can come up with a solution that is not functional assessments but is based on the original premise of what is reasonable and necessary for that individual compared to somebody of the same age who doesn't have a disability. How are we supporting that person to access supports that a person of their age would need to be able to participate in the community? I feel like all of that consultation and engagement has not happened with the sector. Again, a lot of the decisions have been made by people who don't have an understanding of disability. We want to find the solution, but we want to do that in consultation with people who understand the sector. We know there's an issue, but functional assessment is not the solution.

Ms Avery : I would like to add to that if I may. The minister for disability has not gone far enough in pausing the independent assessments rollout. There needs to be no changes to the legislation. There needs to be a cessation of the rollout of independent assessments and a cessation of all proposed changes to the way the NDIS operates until there has been meaningful co-design with people with disability and their families and the sector. We're participating in the consultation process currently. Whenever we raise a concern that a proposed change will be actively harmful to people with disability, we are being told that it's a non-negotiable change. That has to stop, because people's safety is at risk. The NDIA must meaningfully consult with people with disability and their families before making any changes.

Senator STEELE-JOHN: I want to step us back for a moment, because I think it's quite easy to lose sight of a fundamental contention that you have put to us as a committee. Even if there were no concerns about the applicability of certain diagnostic functional capacity tools, even if the agency were proposing that they be carried out, in relation to autistic participants, by the skilled professionals that, in your submission, you have stated are required—even if those two things were the case, which they are not—you seem to be saying to us that the outcome of that assessment, using those tools, with those individuals would still be insufficient to ascertain the funding level required for any particular participant. You seem to be saying that the funding level required to overcome the barriers that exist in their life—barriers to achieving a good life—are created by an interaction of impairment and environment, impairment and context, and, without taking account of that environment and context, we cannot get an accurate picture of somebody's support needs. Is that correct?

Mrs Alach : That is 100 per cent correct. In relation to autism, that is even more true. Autism is a pervasive developmental disability. Compared to other disabilities, which normally have an impairment in one area—for example, a physical disability where a person is in a wheelchair and not able to walk—it's a lot more black-and-white in relation to how that physical disability is going to impact that person's participation across the environments they're engaging in. Also, society is more readily able to adapt to a person who has a physical disability. Autism is a pervasive developmental disability: if you have a delay in communications, you don't just have a delay in communications; that communication delay also has an impact across other areas of development, including how they interact socially and how they may be able to communicate that they are not actually coping in that sensory environment. The teacher will not know that the behaviour that a child is demonstrating is because they can't cope with the noise that's happening outside—but they're not able to communicate with the teacher to say: 'That noise is really upsetting me. What can I do to manage that noise?' Instead the child, limited in their communication, will throw up their papers and get really upset. They are then told to leave the classroom. They are then suspended. This is because of an assumption that they were misbehaving. But misbehaviour in autism is always due to a skill deficit. With autism as a disability, or any other pervasive developmental disability, it has to be looked at in the context of that disability.

We work closely with schools and with the community environment—such as airports and shopping centres. There is a lot of work that needs to be done in our community to increase the awareness of autism and for the environment to be able to adapt and put supports in place for people with autism.

Senator STEELE-JOHN: Ms Avery, would that be your view as well—that a functional capacity assessment, even if it was done right and by the right person, still only captures part of the picture?

Ms Avery : That's correct.

Senator STEELE-JOHN: With that shared understanding, I now want to look at the quality of the tool and its appropriateness to the setting. I want to read an excerpt from your submission. You say:

There is an absence of evidence to the support the use of these tools for the purpose NDIA is using them. There is no evidence that links these tools to producing funding-budgets or equitable funding decisions. These tools are tools designed solely for use by skilled clinicians to guide clinical decision making. Moreover, there are no functional impairment tools that have been designed to provide accurate and reliable estimates of reasonable and necessary funding purposes.

On that basis, what would be the impact of, say, having a physio administer these assessment tools? What are they likely to miss in their attempt to perform this assessment using these tools?

Ms Avery : A physiotherapist would be unable to rephrase the question to get the appropriate answer. For a young autistic person, for example, while a parent might answer that their child is showering independently, actually they're not showering independently. They're not showering unless Mum tells them: 'You need to shower. Have you washed your hair? Have you put on your deodorant?' The parent is prompting a person to do these tasks. Unless the assessor knows and understands autism as a disability, they're not going to be able to prompt to ask those questions. When I raise this issue with the NDIA, their response was: 'We can create a booklet to explain to people how to answer these questions.' That puts the onus on the person with disability and their families to find the time to read the instruction manual to undertake the independent assessment. We have received a copy of the independent assessment report that was performed by a physiotherapist on an adult who is autistic. It was deeply concerning. It was riddled with errors. Of particular concern is that the physiotherapist scored the Vineland-3 back to front, so it appears that the autistic adult has higher functioning in communication skills, daily living skills, social skills and relationships than the average non-disabled population. This type of result would be likely to have that person ejected from the NDIS because they appear to be functioning better than the non-disabled populace.

Senator STEELE-JOHN: To the folks from the Autism Association of Western Australia: do you concur with those views?

Mrs Alach : We 100 per cent concur with that. In addition to that, those assessments will go to exactly what Nick just said: 'Is your child toileting?' In addition to what Nick said, a child might be toileting at home but not at school. Those assessments don't take into consideration the natural supports that are in place or the context of the environment that that person's engaging in.

Senator STEELE-JOHN: So we have a situation where a lot would be missed around critical issues. You've raised the issue of ejection from the scheme, and I want to come back to that. We know that Vineland is just one of the tools that will be combined with others such as PEDI-CAT and WHODAS, and all the rest of it. In your view, what is the appropriate method for those tools to be applied to an autistic participant?

Dr Taylor : None of them.

Ms Avery : We've received an example of parents of an autistic child who is non-verbal. They got the entire way through the independent assessment, and at no point did the independent assessor work out that that child was non-verbal.

Senator STEELE-JOHN: What?

Ms Avery : I'm serious.

Senator STEELE-JOHN: I could get lost in outrage, but that's not my role here today; I'll save that for Senate estimates! Just to follow on from that: just so we are very clear, many of the other tools included in the toolkit are inappropriate and not designed for the assessment of autistic people?

Mrs Alach : Assessment of all autistic people in the context that they're using those for.

Senator STEELE-JOHN: So you would require somebody who is not qualified in the use of this tool and applying it to this individual to then additionally make the call as to which questions relate to which assessment tool, to then know which tool is appropriate to apply in the assessment and which tool is not appropriate to apply in the assessment, by virtue of them being mixed together?

Dr Taylor : As Tasha said, we have seen evidence of reports in which a child has discrepant scores across two of these different functional assessment tools. Our question would then be: how are those discrepancies going to be resolved, and what happens if the use of one tool renders a child ineligible for support? And do the independent assessors have the background knowledge and autism framework to make those decisions that are in the best interests of the children and the families?

Mrs Alach : Overall the tools are invalid. They cannot be used for the purpose for which they're intended.

Senator STEELE-JOHN: That was my follow-up question. Even if we find a national pool of magical social workers and physiotherapists who are able, by virtue of some cosmic confluence, to skilfully apply these tools, we still end up with the reality that these tools, even if successfully applied, even if they were able to take into account context and setting, were never designed to have funding amounts placed upon their outcomes. They are not designed to be fed into one end of an algorithm which will then spit out a set budgetary amount, are they?

Mrs Alach : And they never will be, ever.

Senator STEELE-JOHN: And they never will be. Do you find it concerning that the outcome of this deeply flawed process is, by its design and nature, final and not subject to review or appeal to the AAT?

Mrs Alach : Yes, 100 per cent. We are also significantly distressed at the impact this has had on families and individuals with autism to date, and that it continues to do so.

Senator STEELE-JOHN: Is it a process that lacks procedural justice, in your view?

Mrs Alach : Yes.

Dr Taylor : Absolutely.

Senator STEELE-JOHN: Do you concur with that, Ms Avery?

Ms Avery : Yes. I feel that it breaches human rights, especially as the plan is that people will not be provided a copy of the independent assessment report; it will go directly to the NDIA. I should also note here that the NDIA have advised, in the consultation process, that they are aware that the independent assessment tools are not really suitable for assessing autistic people.

Senator STEELE-JOHN: They've acknowledged that they are aware of that?

Ms Avery : Yes. They are have acknowledged that they aware that the assessment tools are not really suitable for autistic people, but they've chosen them anyway.

Senator STEELE-JOHN: What is their response to that? What have they said?

Ms Avery : I get no response when I ask them, 'Well, what's being done about that?'

Mrs Alach : I'd like to add, really quickly, that some of the research they're often referring to has been done for the NDIA, and the researchers have signed confidentiality agreements in relation to that research. That says there are significant conflicts of interests in relation to the research being used by the NDIA for these consultation papers.

Senator STEELE-JOHN: Thank you.

CHAIR: Mrs Alach, Dr Taylor and Ms Avery, thank you very much for your submissions and for discussing them with us today. We appreciate it.