Mandatory assessments and their impact on autistic participants in the NDIS

Submission to the Joint Standing Committee on the National Disability Insurance Scheme

March 2021

About the Australian Autism Alliance

The Australian Autism Alliance (the Alliance) is a coalition of 12 autism organisations around Australia that represent autistic people, their parents and carers, service providers and researchers who aim to realise the potential of autistic people. Our substantial national footprint:

Reaches over 170,000 people through our communication channels
Employs over 3,000 staff
Employs, or provides pathways to employment, for over 350 autistic adults
Contributes to the Australian economy by generating and delivering an estimated $200m of supports and services
Builds capacity of the broader community through training and advisory services for over 60,000 people per year
Covers nearly all of Australia
Has significant national and international linkages for advocacy, research and service delivery
Provides direct support to over 30,000 autistic people across the lifespan from early childhood to adulthood
Operates 230 service outlets across Australia.

About Autism

Autism Spectrum Disorder (or ASD) is a neurodevelopmental condition. Autism is not a disease. People are born autistic. It is a lifelong condition and there is no cure, but the way it affects people may change over time as a person grows and matures. Every autistic person is different, with their own strengths and challenges.

Autism frequently co-occurs with other conditions including other neurodevelopment conditions (e.g. ADHD, Dyslexia) and Intellectual Disability. There is a high rate of mental ill-health among the autistic population.

Autism and the NDIS

31% of NDIS participants have a primary autism diagnosis and an additional 5% of participants have autism as a secondary disability.1 In the younger age groups 65% of participants aged 7-14 years and 54% of those aged 15-18 years are autistic.

For further information

The Alliance stands ready to assist the Joint Standing Committee in its inquiry into independent assessments, including through providing testimony at public hearings.

1 NDIA, 2019. Outcomes for participants with ASD. Available at: https://data.ndis.gov.au/reports-and-analyses/outcomes- participants-autism-spectrum-disorder

Summary of recommendations

The way the proposed changes have been developed is highly problematic

Halt the rollout of mandatory assessments until different approaches have been piloted and comprehensively evaluated, and meaningful co-design with NDIS participants and those that assist them has occurred.
Commission a comprehensive evaluation of the second pilot, examining both process and outcomes. The evaluation needs to be conducted independently of the NDIA, with results made public.

We have significant concerns about proposed changes to the planning process

Abandon the proposal to use functional assessments as the primary determinant of plan budgets, reflecting the intent of the NDIS Act to place participants at the centre of the planning process. Participant goals, aspirations and needs must drive their plan and inform their budgets.

Significant protections are needed if functional assessment proceeds

Embed the following protections if the NDIA’s functional assessment proposal (which is opposed by the Alliance) proceeds:
- Allow participants to undertake the assessment with their existing clinician/therapist, using the NDIA tools and report format.
- Require compliance with the National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorders in Australia. This includes using assessors that meet the minimum autism training and experience thresholds set out in s.22 of the Guideline.
- Specify minimum experience standards for the assessor workforce that organisations contracted by the NDIA contractors are bound to meet.
- Provide participants with a full version of their functional assessment results, at the same time as they are sent to the NDIA.
- Provide avenues for review of functional assessments and their related access and plan budget determinations, including to the Administrative Appeals Tribunal.
- Allow for exemptions from participating in functional assessments to be granted on the basis of advice from a participant’s medical practitioner, including where such assessment might put the person’s mental health and wellbeing at risk.

Overview

We have deep concerns about proposed changes to access and planning for NDIS participants

The Australian Autism Alliance (the Alliance) welcomes the Inquiry of the Joint Standing Committee on the NDIS (the Committee) into independent assessments.

We note that the Committee has offered broad terms of reference to guide its Inquiry. This is appropriate and reflects the focus and concerns that NDIS participants and the disability community repeatedly sought to raise with the NDIA.

We are proud to provide a platform for autistic people and their families to raise concerns with the Australian Parliament, through the Committee. As such, we include a focus on autistic voices in the form of quotes and case studies, provided to us via emails, phone calls and interviews over the past few months. These are intended to provide the Committee with an unfiltered insight into the effect that mandatory assessments will likely have of autistic people interfacing with the NDIS and their families.

Style note: Throughout this submission we have made the decision to refer to “independent assessments” as “mandatory assessments”. We disagree that the NDIA’s model of assessments is independent.

The proposed changes to the NDIS access and planning policies, particularly the introduction of mandatory assessments to determine access and plan budgets likely constitute the most radical change to the NDIS since its roll out.2

A change of such magnitude requires careful design, refinement and implementation, yet the process has been marked by:

Major policy changes being designed without a supporting evidence-base.
A lack of consultation on substantial aspects of the policy re-design. Consultation has instead been limited to a narrow range of secondary issues.
A failure to consider real and material concerns raised by the autism and broader disability sector.
Rushed implementation of proposed changes, with no good reason for the haste. Commissioning processes started ahead of pilots being completed or properly evaluated.

The Alliance acknowledges the stated objectives behind the introduction of functional assessments, specifically the intention that consistency and equity should be at the centre of decision making, and that doing so will result in a fairer NDIS. The Alliance does not believe that the proposal, as it currently stands, will achieve these objectives. Indeed, it may exacerbate inequities. We understand financial sustainability of the Scheme to be a major driving factor, but do not believe using mandatory assessments as a blunt instrument to tighten access to the Scheme and determine individual plan budgets is the way to achieve this.

The Alliance holds grave concerns that the proposed changes pose a real risk to autistic people who are currently NDIS participants, as well as those seeking to access NDIS supports in the future. These

2 We note that at the time of publishing, the Government’s exposure draft of its Bill to amend the NDIS Act (2013) has not been released.

concerns were captured in an earlier public statement made by the Alliance, and are widely shared among the broader autism community, the disability sector, some LAC Partners and allied health professionals. The Alliance is signatory to a recent joint sector statement which unites a range of voices.

Given our deep concerns, we call for the introduction of the mandatory assessments and their use to determine access and budgets to be immediately halted.

The current pilot on the proposed assessment process needs to be thoroughly evaluated by an independent body and its outcomes robustly measured and understood before these proposals can be considered.

Alternative approaches to improving consistency and equity in access and planning need to be piloted and evaluated.

As the single largest diagnostic group within the NDIS, it is critical that future reforms work well for - and are designed with - autistic people.

The way the proposed changes have been developed is highly problematic

The proposed changes were presented as a fait accompli

The public tender process to select the NDIA’s panel of assessors was initiated well before information about the scope and scale of the reforms was publicly released or consulted on, and before critical pilots have been completed and evaluated.

That the NDIA’s public consultation process was conducted after key changes had already been determined fatally undermined confidence in the process and has left the indelible impression that the introduction and key design elements of mandatory assessments is a fait accompli.

Consultation with participants and the community has been limited

The Alliance acknowledges that the NDIA has released its mandatory assessment framework and related consultation papers and held forums on proposed changes to the access and planning policy. However, the format and focus of the consultation sessions and the questions posed in the published papers have been strictly limited to issues of implementation rather than substantial design. The potential for co-design of solutions has been off the table.

Alliance members and many autistic people from the communities we support have attended forums held by the NDIA. It is reasonable to report that most experiences were negative, characterised by frustration and a common feeling that key concerns were not being acknowledged and genuine questions remaining unanswered.

We are also disappointed to report that in many cases, autistic people are hearing about these reforms for the first time from Alliance partners. Given the scale of the proposed changes and the impact they will have on participants’ lives, a focused body of work is required by the NDIA to ensure that its key stakeholders are engaged and aware of these reforms.

Michael Manthorpe PSM, Commonwealth Ombudsman, in his submission to the JSC, outlined his concerns regarding the breadth of changes and the timeframe in which they have been proposed to be implemented.

The breadth of changes being introduced in a relatively short timeframe may present a challenge for the NDIA, its partners and for participants, carers, advocates and service providers.

From our work with participants, carers and disability stakeholder groups, we know that poor or inconsistent information, unclear processes and delays in decision making are among the most frequent causes of complaints. These are the kinds of issues that may arise with the introduction of a number of changes to policy, processes and timeframes within a short period.3

Alliance partners have received community input and feedback from autistic people and their families that support Mr Manthorpe’s observations.

The proposed reforms are untested, unproven, and unevaluated

The use of mandatory assessments to be the primary determinant of NDIA access decisions and plan budgets is untested, unproven and unevaluated.

In our consultations with a range of experts, we have been unable to find an international example where the proposed assessment tools have been used for the purpose of determining a disability

3 Available at: https://www.aph.gov.au/DocumentStore.ashx?id=d8b59bf9-62c1-476b-b8c0-40149e5b9917&subId=703977

support budget. The tools have been designed for screening and assessing functional capacity, not for feeding into an algorithm to determine funding allocations. How the assessment results will be used to do this has not been explained, nor the results of any modelling or testing been made available. Key elements of the policy architecture remain shrouded in mystery; for example, a critical element of the policy is known as the “Personalised Budgeting Tool”, which is the means by which a person’s mandatory assessment outcome will be translated into an NDIS budget. To-date, representatives of the disability sector have received limited briefings on this tool and have had no opportunity to contribute to its scope and development.

The NDIA’s first mandatory assessments pilot, understandably impacted by the COVID-19 pandemic, was very small scale. The full evaluation has not been released, instead NDIA-generated reports of the pilot’s “success” appear to have been based on an online experience survey completed by just 35 NDIS participants.

A second pilot, which is larger in scale, is currently underway. At this point, we understand the planned evaluation is narrow in scope – essentially a process evaluation – and will be conducted by the NDIA itself. It will not answer key questions such as how the assessments will impact plan budgets and whether they will deliver on the objectives of consistency and equity.

My child took part in the independent assessment trial. It was a long process that left us with a feeling of uncertainty and more questions. The only comfort came from the fact that was a trial and came with an assurance that it would have no impact on our plan.

A robust and rigorous outcomes evaluation is needed. This needs to be conducted independently of the NDIA, and its results published in the public domain.

Recommendations:

1. Halt the rollout of mandatory assessments until different approaches have been piloted and comprehensively evaluated, and meaningful co-design with NDIS participants and those that assist them has occurred. 2. Commission a comprehensive evaluation of the second pilot, examining both process and outcomes. The evaluation needs to be conducted independently of the NDIA with results made public.

We have significant concerns about the design of mandatory assessments

The proposed reforms will not address systemic inequities

The Alliance agrees that inequities of outcomes, based on the socio-economic status of participants needs to be addressed. Use of mandatory assessments as a blunt tool to determine access and plan budgets will not achieve this. Indeed, it may well exacerbate inequities.

While there will be an equal process in theory, it will not generate equity in outcomes. Those who can eloquently describe their functional capacity challenges will do better than those who are unwilling or unable to honestly describe the challenges they face in their daily lives. People with low social capital, low education; distrust of government; or low English proficiency are at higher risk of receiving assessment results that do not accurately reflect their circumstances. Those who understand the process may have the perverse incentive to show their ‘worst self’ in order to have a greater level of impairment recorded and attract higher funding.

I have held senior roles for most of my career, have post grad qualifications and other post grad education. Some of the questionnaires were difficult to follow and required mathematical calculation to determine number of hours spent completing them. It was exhausting.

While the NDIA has indicated that a participant can ask their treating health professional to attend the assessment, there is no funding to cover this. This option will therefore only be available to those who can afford to pay, which raises equity issues.

High consequence assessments conducted by a stranger will not work well for autistic people

Autism is multifaceted, nuanced and highly variable in how it affects the functional capacity of each autistic person, in each situation. It will be very challenging, even for the most skilled assessor, to build a comprehensive and accurate picture of the needs and circumstances of an autistic person they are meeting for the first time, and for a very short window (average of 2.5-3 hours, including report writing).

The speech pathologist commented that she found it very difficult to do the assessment in the time allocated and felt the process was compromised as we were not using any prior assessments/ reports from individuals that had more background about the individual’s profile.

Attending a high stress, high consequence assessment with an unknown therapist who has undetermined expertise in autism will also be incredibly challenging for autistic people and their families.

Through consultation with Alliance partners and members of the autistic community we have identified the following substantial concerns:

Stigma, shame and pride can result in autistic people masking and overstating their capacity to function, risking inaccurate assessment outcomes.

I am very worried that children like mine will miss out on funding if these functional assessments take place, particularly by strangers because that’s when Autistics mask the most.

My daughter masks a lot and so presents very differently when around other people to how she does at home. Her OT has only just started seeing all her struggles after working with her for months. Initially she was extremely compliant and because she’s verbal and chatty, people who don’t know her would never know that she’s Autistic. The psych who assessed her was on the fence about her diagnosis, so she sent a colleague to observe my daughter at Kinder. Because my daughter had no idea the colleague was there for her and she was very comfortable at Kinder, the colleague saw more traits there than the psych had during the ADOS.
Autistic people and their families have expressed despair about the indignity of having to outline their personal challenges and deficits in great detail to a stranger, again and again.
Significant anxiety and fear are real barriers to participation. Some have not been able to complete the assessment. Under the proposed changes this would mean they would be treated as withdrawing their access request.
Disturbingly some have reported a heightened risk of self-harm such is the anxiety that this proposal provokes.
Heightened impacts have been reported by those with a history of trauma, abuse or violence.

The significant burden on parents and carers, particularly autistic parents who will have to attend their own assessment, as well as their child’s assessment.

I have experienced nothing but anxiety and stress dealing with NDIS over the years. This is on top of the role as a carer for two children with special needs. I think it’s disgraceful that we have to fight every single year. Year after year for a funding scheme that was meant to assist people in need. Some of the most vulnerable members in our society are yet again being left out.
Assessment questions are binary and do not allow for context.

Interestingly the assessor shared with us that they had been instructed not to use any of their professional/ clinical judgment. For instance, when undertaking the observation their instruction was to record exactly what they saw. No judgment or assessment, no context or explanation.

My daughter looks like she doesn’t need help because she has more social awareness. Her challenges include sensory overload, being easily led, and a tendency to hoard. The hoarding is a big one – she hoards to control her world which means without help, her bedroom becomes a health hazard. A few years ago we found mice nests in there. At the moment it’s under control, but that’s because we have worked for two years to get to this stage. A support worker has come to our house for two hours, three times a week, helping her to keep it clear and ordered. It took a year to build the rapport, and another six months to get it clean. That’s a lot of work, and the support worker is like family to her.

If she did an independent assessment now it would look like she’s capable and high functioning, but in reality it’s fragile and losing support is frightening. She’s been assessed as a suicide risk in the past, and I’m scared that an assessment will mean losing the support that she relies on.

The assessment was comprehensive and detailed, but it only captured a point in time with limited context.
The requirement for a third party to speak privately to the assessor undermines the agency and dignity of the person with disability.

Scarce public resources will be wasted on repeat assessments

Many prospective or current NDIS participants will have pre-existing mandatory assessments, but will likely still need to undergo the NDIA mandatory assessment process. For example, a person recently diagnosed as autistic will have undergone a comprehensive functional capacity assessment (consistent with the Australian Government endorsed National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorders in Australia) using many of the same tools proposed by the NDIA.

While the NDIA have indicated that pre-existing assessments will form part of the overall ‘evidence’ it is unclear how much weight they will have, given assessors are restricted from accessing these reports or using them as a reference. Requiring repeat assessments (despite earlier ones often being funded by Medicare or other public means) represents wasted resources that could be better applied elsewhere to provide improved outcomes. It also creates the potential for inconsistent results, which under the proposed reforms could not be adequately addressed through review or grievance processes.

We also question the logic of subjecting participants to frequent mandatory assessments throughout their time on the scheme, when their planners and treating practitioners are better placed to keep the NDIA informed of key information.

I find it incredible that an “independent” assessor is needed to assess our kids/young adults. I’m not sure what part of 17 years of written reports by paediatricians, speech therapists and OT’s at the Royal Children’s Hospital needs to be redetermined.

Yes, needs change, but most needs/requirements are recommended by experts and adjusted yearly under what is already an extremely stressful process. To add another layer is money wasted. The requirements recommended are to help our kids to function with dignity and choice not a random “wish list”.

Assessments will be undertaken by clinicians with insufficient autism experience

The ‘disability agnostic’ assessment approach being proposed by the NDIA brings with it a real risk that assessors will not have specialist training or experience in autism. The National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorders in Australia recommends (in Section 4.2) that therapists and clinicians conducting functional assessments have a detailed understanding of and experience in assessing autism.

If the assessor lacks autism proficiency, there is a danger that the assessment tools they choose and the way they use them will be problematic. Their expert judgment (or lack thereof) about which tools to use and how to use them is material to the assessment outcomes.

We are also concerned that the assessor workforce will be largely comprised of junior clinicians. While assessors will need to hold the appropriate professional qualifications and be registered with the Australian Health Practitioner Registration Agency (except in the case of speech pathologists, for whom the only point of accountability is their professional association), organisations delivering assessment services will likely hire relatively inexperienced, less expensive therapists, in order to maximise their returns.

They just postponed our IA on the 13th till the 30th. Apparently the OT they assigned didn’t have training in the child measures.

Perverse incentives may lead to cost cutting in the assessment process

Each independent assessment will be funded by the NDIA on a unit, rather than a time basis. This creates an incentive for assessment providers and their workforce to focus on efficiency at the expense of quality and accuracy.

Companies awarded the NDIA assessment contract may devolve the delivery of assessments to sub- contractors. This raises considerable red flags about quality assurance, oversight of practice and a further tangling of both the lines of responsibility and the contractual incentives that will be driving the assessor workforce.

Thin markets will be exacerbated by diverting therapists into NDIA assessments

NDIA tender rules prevent contractors from undertaking assessments in local government areas where they are providing Local Area Coordination, Early Childhood Intervention or Support Provision services for the NDIS. We do not dispute this effort to manage conflicts of interest.

Allied health workforce shortages are well understood. We are concerned that a direct consequence of introducing this new administrative layer of assessors to the NDIS will be diversion of critical allied health workforce resources away from delivering supports to people with disability.

Reducing the pool of qualified therapists available to support people with disability will surely exacerbate thin market challenges, particularly in remote, rural, regional and outer-metro areas, and for cohorts who find it particularly challenging to secure a therapist. Such policy failure is both foreseeable and avoidable.

NDIA-commissioned assessments are not independent

Motivations to cut scheme costs, and the centrality of NDIA-commissioned assessments in determining scheme access and plan budgets, creates a clear conflict of interest for the Agency and their contractors.

There is no proper oversight of the proposed assessment process

The Alliance is deeply troubled by the proposal that people will not be given a copy of the full assessment report unless they specifically apply to see it, and that assessments will not be reviewable by the Administrative Appeals Tribunal, despite the significant impact it will have on access and plan budget decisions.

We did not get a readback of what they recorded. So for instance my child went and undertook an activity so they could observe him. It took a lot of coaching and correction to get to the end result. We don’t know if they recorded every step of that coaching, or if they recorded that my child completed the task.

This clear gap in policy design has also been identified by Mr Manthorpe in the Commonwealth Ombudsman’s submission to the Inquiry:

The NDIA will need to ensure that where participants are assessed as no longer eligible for funded supports based on the outcome of an independent assessment, they have clear information about how to seek a review of the decision and make complaints or provide other feedback.

We agree with Mr Manthorpe. The proposal to isolate mandatory assessments from external scrutiny represents a fundamental disempowerment of participants and a disregard for natural justice. It creates a dangerous imbalance in the relationship between participants and the NDIA and must be addressed.

Not what the Tune Review recommended

Forcing participants to use NDIA appointed assessors contradicts the Tune Review which explicitly states:

NDIA should not implement a closed or deliberatively limited panel of providers to undertake functional capacity assessments.

We also have significant concerns about proposed changes to the planning process

Participant rights and voice are being disregarded

Proposals for draft plans and budgets to be developed without participant input are alarming. They undermine participant voice and agency. Perversely, these changes will move the Scheme further along the trajectory of being a ‘welfare-ised’ model that is all about residual funded supports rather than an empowerment/rights model that is about participation.

Section 31 (a) and (b) of the NDIS Act (2013) Clth provides that the preparation of a plan should (so far as reasonably practicable) be individualised and directed by the participant. Yet proposed changes would mean that participants have a draft plan and draft plan budget developed on their behalf before given the opportunity to outline their goals and aspirations and without reference to their identified support needs. The ability of either the participant or their planner to substantially alter the budget or content of their plan appears to be strictly limited (even more so that the current Typical Support Package range).

Far from directing their own plan, participants will be forced to shoehorn their goals, aspirations and needs into a plan and budget pre-built by the “Personalised Budget Tool”, which will be based on deficits and impairment.

Participants need to be elevated to the centre of the planning process. We need to strengthen rather diminish the opportunity for the participant to drive their plan, with the overriding aim being to meet their goals and aspirations with opportunities and supports.

Mandatory assessment tools are not designed to be converted into a plan budget

The proposal conflates functional capacity with support needs, which are not the same thing. The results of mandatory assessments should not be the determining factor in plan budgets. Function assessment tools do not give the full picture of the person’s needs. They have not been designed to do so. Nor were these tools designed to allocate funds.

They were only assessing his function, not what his and our priorities are and the relative magnitude of these. So it might be true that he can’t dress himself, but our biggest issue might be his safety in the community. While we will be able to spend any funding flexibly, it might be that the supports required to increase his safety or address behaviour issues is more substantial than supports that help him dress himself.

Recommendations:

3. Abandon the proposal to use functional assessments as the primary determinant of plan budgets, reflecting the intent of the NDIS Act to place participants at the centre of the planning process. Participant goals, aspirations and needs must drive their plan and inform their budgets.

Significant protections are needed if mandatory assessment proceed

The Alliance does not support the NDIA proposed model for assessments as it currently stands. If a version of it proceeds, there are a range of conditions and protections that must be put in place. For autistic people these include:

Allowing participants to use their existing clinician/therapist. The assessment would be funded by the NDIA and be delivered using the tools and format required. We are mindful that the NDIA is concerned about ‘sympathy bias,’ but believe that if this actually exists, it can be of managed and controlled for. Oversight via the Australian National Audit Office and leveraging professional standards governing clinicians/practitioners would hold assessors accountable.
A requirement that mandatory assessments for autistic people are conducted in accordance with the government-endorsed National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorders in Australia.

The Guideline requires that assessors be skilled and experienced in working with autistic people.

If they happen, they need to be done by a therapist that the child knows well, who also has lots of experience with Autistic children.
Allowance for exemptions from participating in mandatory assessments to be granted on the basis of advice from a participant’s medical practitioner, including where such assessment might put the person’s mental health and wellbeing at risk.

We consider it appropriate that the lens of ‘risk and safety’ can be applied fairly in the context of avoiding psychological harm and trauma for participants and their families who are compelled to undergo both the independent assessment at the hands of a stranger.
Provide avenues for review of mandatory assessments and their access and budget decisions, including to the AAT. Natural justice and procedural fairness dictate that participants receive a copy of their report, at the same time the NDIA do, and that they access to review.
A minimum experience requirement for the assessor workforce must be set out by the NDIA in its contractual arrangements with assessment providers.

Inspiration can be drawn from Victoria’s Transport Accident Commission which requires that assessors demonstrate a minimum of five years clinical experience; a minimum of eight hours each week of direct clinical care experience, either currently or over a 12-month period; and for retired clinicians, evidence of currency of clinical knowledge through ongoing academic studies.

The NDIA estimates that the volume of assessments by disability types will see 28% of referrals to assessors in 2020-21 being for autistic participants, rising to 33% of referrals in 2022-23. With autism representing the largest single diagnostic cohort within the NDIS, it is essential that any organisation delivering assessments, and their staff and sub-contractors, can demonstrate experience and training in working with autistic people

Recommendation:

Embed the following protections if the NDIA’s mandatory assessment proposal (which is opposed by the Alliance) proceeds:
- Allow participants to undertake the assessment with their existing clinician/therapist, using the NDIA tools and report format.
- Require compliance with the National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorders in Australia for functional capacity assessments of autistic people. This includes using assessors that meet the minimum autism training and experience thresholds set out in s.22 of the Guideline.
- Specify minimum experience standards for the assessor workforce that organisations contracted by the NDIA contractors are bound to meet
- Provide participants with a full version of their mandatory assessment results, at the same time as they are sent to the NDIA
- Provide avenues for review of mandatory assessments and related access and plan budget determinations, including to the Administrative Appeals Tribunal.
- Allow for exemptions from participating in mandatory assessments to be granted on the basis of advice from a participant’s medical practitioner, including where such assessment might put the person’s mental health and wellbeing at risk.