Brotherhood of St Laurence

Working for an Australia free of poverty

Independent Assessments in NDIS

Response to Joint Standing Committee

Brotherhood of St. Laurence March 2021

About the Brotherhood of St. Laurence and the National Disability Insurance Scheme

The Brotherhood of St Laurence (BSL) is an independent non-government organisation with strong community links that has been working to reduce poverty in Australia since the 1930s. Based in Melbourne, but with a national profile, the BSL continues to fight for an Australia free of poverty. The BSL has a strategic focus on building evidence-informed policies and practices that promote community inclusion and participation of all people, especially those experiencing exclusion or disadvantage. This commitment underpins our role as a LAC and ECEI provider for the NDIS in the North Eastern Metropolitan, Hume Moreland, Western Melbourne and Bayside Peninsula areas in Victoria. We have been delivering LAC since July 2016 as part of the first phase of NDIS implementation. We commenced as an ECEI provider in November 2016, and now work with around 40,000 people with a disability in LAC and ECEI. Our engagement in this planning and community capacity building is driven by the recognition that people with disability are among the most socially and economically excluded Australians, while also making an enormous contribution to our community.

Through our Research and Policy Centre and in partnership with the Melbourne Disability Institute of the University of Melbourne we undertake research and evaluation activities with the aim of driving transformational disability policy and informing the successful implementation of the Scheme to support people with disability to live a good life.

Brotherhood of St Laurence 67 Brunswick Street Fitzroy Vic. 3065 Australai

ABN 24 603 467 024 ARBN 100 042 822

Ph. (03) 9483 1183

www.bsl.org.au

For further information or to discuss this submission, please contact:

Prof Shelley Mallett Director, Research and Policy Centre Brotherhood of St Laurence

Mr Rodney Weston Director, NDIS Services Brotherhood of St Laurence

Summary

The Brotherhood of St. Laurence (BSL) welcomes the opportunity to contribute to the Joint Standing Committee’s Independent Assessments inquiry.

The National Disability Insurance Scheme (NDIS) was established to replace an unsustainable disability system which was ‘underfunded, unfair, fragmented, and inefficient’ with one which takes a lifetime approach to investing in people with a disability and their families, so they can live an ordinary life (PC 2011, p. 2). This approach recognises that by building the independence and social and economic participation of people with a disability, the NDIS will reduce long-term costs and produce a return on investment to taxpayers.

This is a transformative Scheme, not only for people with disability and their families and carers, but also for the Australian community. The rollout of the NDIS has been of tremendous benefit for people with disability - and the broader community - over the past five years. By every measure, the NDIS is a vast improvement on the system that preceded it.

In our experience, people with disability are also growing in confidence and expectations for social and economic participation as a result of the Scheme, especially when they receive respectful and reliable assistance and support through a designated Local Area Coordinator or Planner.

Unsurprisingly - given that the Scheme is only two years from full rollout in most states and is still rolling out in WA - the NDIS is not perfect and the case for ongoing improvement is clear. The Tune Review (2019) clearly highlighted some of the flaws and frustrations with the implementation of the Scheme, and notably specified 29 recommendations which had widespread support.

With that in mind, we support:

the Agency’s objectives to improve consistency of decision-making and equity;
the revision of Access processes to focus on the impact of disability on a person’s life rather than a specific diagnosis, particularly when determining access to the Scheme;
the provision of fully funded assessments for all participants;
focusing the role of Local Area Coordinators on helping a person to navigate the Scheme and make the most of community and mainstream supports
increasing flexibility for plan budget usage.

However, we are receiving strong feedback from people with disability, families and carers expressing concern that ‘Independent Assessments’ (as proposed) will take the Scheme backwards rather than forwards. The depth of community concern should not be underestimated and stands in contrast to the support, hope and excitement which accompanied the creation of the Scheme.

Concerns include:

Many people with disability, families and carers believe that they are not being heard and that IAs will reduce the effectiveness of the Scheme. The Agency and DSS have suggested that this is the result of misinformation or misconceptions. However, consultations on IA have been undertaken after the changes have been announced as a definite decision: they are limited in scope and focused on how to implement the changes, rather than seeking feedback or ideas about the design of the Scheme;
The use of third-party interviews (separate from the participant) as a core part of the IA process reintroduces the notion that people with disability cannot speak for themselves;
Eliminating goals and aspirations from the planning process is contrary to the principle of building independence and individual capacity for each person - and also contrary to Productivity Commission Report (2011) and Tune Review (2019) recommendations. It means that legitimate and ordinary aspirations (such as living independently) will not be considered when determining an individual’s funding;
The trials of IAs to date have been limited in scope, essentially operating as data collection for the functional capacity assessment process. There have been no trials of using IAs to determine access or plan budgets, and whether the plans that result will be fit-for-purpose, or what the impact on Scheme costs will be;
Shifting the focus of a Participant Plan from specifying reasonable and necessary supports (in the context of informal, mainstream and community supports, a person’s needs and their goals) to a ‘simple’ Plan Budget (based on functional capacity) will simply shift the complexity of identifying support needs into plan implementation. It is not at all clear what will happen if the plan budget is inadequate to meet those support needs.

There is risk that these reforms will erode the coherence of the NDIS, which is world-first in its elevation of human rights, choice and control and individualised support for people with a disability.

Given the concerns above, and the scope and scale of the proposed reforms, the Brotherhood of St. Laurence recommends that:

The Agency and the Government consult more widely and thoroughly on the design of the proposed IA and related reforms, harnessing insight from people with disability, their families and carers to ensure that changes will bring the desired improvements.
Openly evaluated trials be undertaken to test the efficacy of Independent Assessments for use in building plan budgets as well as determining access to the scheme. The outcomes of these trials should be rigorously assessed against the outcome of current processes, before committing to nationwide rollout of changes.
Amendments to the Act be made after the updated National Disability Strategy is released, with a focus on goals, aspirations, building individual capacity and independence remaining as key priorities for the Scheme.

BSL’s approach to developing this submission

The BSL previously submitted a response to the NDIA’s consultation on the proposed access and eligibility and planning policies.[1] That submission drew on consultations with over two hundred BSL staff delivering Local Area Co-ordination including at least 18 who are also participants in the Scheme. This submission to the Joint Standing Committee builds on this work. Our response is underpinned by our commitment to ensuring the NDIS lives up to its transformative potential for people with a disability, their families and carers, and the wider Australian community. We seek to provide feedback that contributes to ensuring the aims of proposed reforms are achieved, and to provide deeper understanding of the strengths and risks of proposed actions, informed by the experiences of people with disability and their families, and BSL staff.

Four key sources of information and expertise inform this submission:

Semi-structured consultations with over 230 BSL NDIS staff members.
Semi-structured consultations with 18 BSL NDIS staff members who are scheme participants, or family members/carers of participants.
Open consultations with key organisational stakeholders in the disability sector.
Previous research and policy work undertaken by the BSL Research and Policy Centre together with the BSL LAC team, and on the findings of the numerous reviews and inquiries into the NDIS over the past three years.

In this submission we respond to several of the Terms of Reference and raise one additional matter: the requirement to have a third party participate in the IA (the Vineland assessment). We have also included as an attachment a case study of a participant who participated in the trial of the IA process to illustrate a number of our concerns.

[1] The BSL’s submission to NDIA was made in confidence due to the inclusion of confidential contractual information as an NDIS Partner in the Community.

1 The development, modelling, reasons and justifications for the introduction of independent assessments into the NDIS

We support the objectives to ensure equity, sustainability and consistency in the scheme; however, our view is that IA (as proposed) will not solve inequity, inconsistency and scheme sustainability issues. Implementation of IAs risks unintended negative consequences for these objectives and the broader ambition of the NDIS.

Equity, sustainability and consistency are essential but they are not sufficient. To be consistent with the stated principles of the Scheme articulated in the NDIS Act, assessments must also advance:

dignity and respect for people with disability and
supports that are valid or accurate for each person, considering their goals, environment and personal circumstances.

Equitable access is not the same as equal access. While both equity and equality seek fair outcomes, equality is achieved by treating everyone the same and equity is achieved by treating people according to need and circumstances. The latter is a key tenet of the person-centred approaches at the heart of the NIDS. Our concern is that the proposed IAs are people-focused rather than person-centred - bringing a one-size-fits-all approach to access and planning. The risk of overfunding some is as great as the risk of underfunding others.

The assessments of functional capacity (as proposed) do not adequately take account of the personal/familial and environmental context (knowledge, attitudes, networks, access to funded and unfunded resources) which complement functional capacity and contribute significantly to each individual’s social or economic participation

IAs risks replicating or extending existing inequities between groups. People and families with higher levels of social and cultural capital including education, experience navigating systems, and capacity to advocate for their needs within a complex bureaucracy will continue to be advantaged when communicating with independent assessors and navigating the assessment process. People with intellectual disability, psychosocial disability, those from CALD backgrounds, and people with limited informal supports or capacity to advocate will remain disadvantaged by the proposed approach. They risk exclusion from the scheme when technically eligible, as well as having only limited access to unfunded supports.

The challenge of Scheme sustainability will not be resolved by simply narrowing eligibility for the scheme and capping plan funds. The scheme sits within the context of the National Disability Strategy which requires that the right supports are in place for all people with disability, whether they be funded through the NDIA, other service systems or provided through mainstream and informal supports. We recommend that changes to the NDIA be informed by the completed National Disability Strategy.

The proposed reforms are participant-centric, with little recognition of the role of the Scheme in supporting people with disabilities who do not meet or have not yet met the access requirements for funded supports (Tier 2), or of the critical role of community and mainstream supports in reducing need for funded supports for participants.

Providing appropriate support in the community and ensuring people can access this support ensures that people only move into the scheme when necessary.

If the NDIA do not consider and cater to people with a disability who do not meet access to the NDIS for funded supports, we risk an increase in unmet need, combined with declining community/mainstream capacity, resulting in an increased rate of access requests to the Scheme.

To avoid this, the role for the NDIS in providing Tier 2 assistance needs to be scaled up, to ensure that the Scheme will be sustainable into the future.

This risk may be exacerbated by the reduced focus on building capacity of people with disability, which is referenced only once in each consultation paper other than to note removal of line items for capacity building supports in a funded plan.

Further, we are concerned about the following issues with the current development, modelling and justifications for the introduction of IAs into the NDIS:

Inadequate engagement with people with a disability and their families and carers about to introduction of IAs. As the Tune review stated, implementation of IAs requires ‘extensive consultation with participants, the disability sector, service providers and the NDIA workforce’ and the ‘willingness of prospective participants and participants to work with NDIA-approved functional assessors’ will be a critical dependency for the success of the changes (Tune, 2019). However, despite unprecedented concern in the disability community about the introduction of IAs, the process has proceeded at a rapid pace - the NDIA expects to roll out the use of IAs for access to all applicants over the age of 7 from mid-2021. The NDIA’s consultation process was about finetuning the already determined IA process and framework, not whether the proposed changes were the best or only option to achieve the stated aims.
The pilot project on IAs has received varied feedback from those who have participated and it is important to remember that the pilot was an optional process for participants with no specific consequences re impact on access or funding.
With respect to access, we note that the first pilot suggested that up to 8% of those participating in the pilot would not be eligible based on their functional capacity assessment. However, as the pilot did not include applicants to the Scheme (some of whom may not meet current access requirements, but may be eligible through an IA), there is inadequate data to expect that this rate would be broadly applicable.

2 The independence, qualifications, training, expertise and quality assurance of assessors

Completing a functional assessment of a person with disability requires a specific skill set, including the ability to establish rapport quickly, experience in assessment of people with a disability including adapting to ensure accessibility, and understanding of disability and all its complexities. The accuracy of the assessment depends on the assessor asking the right questions and facilitating an accurate description of a person’s situation. This will be impacted by their experience, training, depth of knowledge of disabilities and the NDIS itself.

The discussion paper does not specify minimum or required standards for the assessors.

The value of a relationship

Many people consulted expressed concern that information gathered by an assessor not familiar with the person, their circumstances or their way of communicating would not truly reflect the person’s capacity or support needs, or that an independent assessor might not explore the responses provided by a person in enough depth to be able to appreciate their unique situation and needs. This would potentially reduce funding for supports. The NDIA acknowledges a difference between assessment results for funding purposes provided by a therapist familiar with a person, and an unknown assessor in the Independent Assessment Framework, attributing the difference to ‘sympathy bias’ (NDIS, 2020 (4), p. 7) rather than a deeper understanding of the participant’s needs.

BSL’s experience suggests that experienced LACs with a longer relationship with a participant are more likely to support them to overcome barriers to participation and identify more modest expectations of funded supports, through goal-focused aspirational conversations. LACs regularly contact people and support them for some time to work through personal barriers and attend a meeting. It is doubtful that this level of support would be provided by an independent assessor to complete the assessment, and instead the person might be considered to have withdrawn their access request if they declined an appointment.

Assessment by a person without an established relationship may result in over or under-reporting for reasons including lack of trust, pride, stigma and compliance effects. There may also be adverse effects including increased anxiety. While the intention is to recruit experienced allied health workers, these concerns have been confirmed by families who have reported poor experiences during the current trial, with participants distressed or impacted negatively by their experience of an independent assessment.

Some were concerned about the number of people involved and having to repeat their story to different people with too many handovers between delegates, assessors and LACs needed on the pathway from access to plan approval.

The Early Childhood Reset recommendations have identified an approach that might reduce these concerns, with ‘independent assessments’ completed by EC Partner staff (NDIS, 2020(3), a person known to the family, but not responsible for their ongoing support. Such an approach might be seen as finding middle ground. This model could be explored for participants aged over 7 (or 9+ after EC reset).

3 The appropriateness of the assessment tools selected for use in independent assessments to determine plan funding

Our consultation, which included qualified academics and health professionals, identified concerns that the selected tools may not be fit for purpose. Two primary concerns were identified:

Tools used measure functional capacity, which does not directly equate to support need. For instance, they can measure medical conditions, mobility, or what people need assistance with. But they were not designed to decide appropriate funding for the supports to meet these needs.

This is an untested application and no other disability system in the world uses this approach. This is not an issue for access decisions, but if results are used to determine a budget, there is a risk that the budget will not be appropriate for the person’s needs.
Tools were selected to provide a consistency of experience (with a single set of tools for all people in a given age bracket) rather than on basis of being suitable or most appropriate for specific disability types.

4 The implications of independent assessments for access to and eligibility for the NDIS

BSL supports changes to the access process that reduce the cost and other challenges associated with providing evidence to inform access decisions.

However, the requirement for evidence of a person’s functional capacity, or the impact of disability, is not the only barrier to access. Some people (e.g. children in out-of-home care, people moving due to family violence) experience considerable difficulty gathering medical information - including their diagnoses - due to inconsistent medical care; others, particularly some participants with psychosocial disabilities, experience significant challenges attending appointments (in person, by phone or virtual).

LACs currently support people to navigate the access process, and even with independent assessments we believe there will continue to be a need for ongoing support for participants to navigate the process.

Information about how results of independent assessments will be used to inform access decisions is limited at this time. Given the NDIA’s commitment to transparency and accessibility, we hope that it will be publicly available in accessible formats by time of implementation.

As noted in Section 3, functional capacity and support needs are not the same, and the identified assessment tools were not designed to be used to allocate levels of support funding. There is no information available that specifies how results of IAs will be used to develop a plan or inform plan budgets, and no evaluation has been undertaken of the effectiveness of this approach for assigning funding for supports.

It is also unclear how information about individual circumstances and environmental factors included in the assessment will be applied to develop a ‘personalised budget’. We support the inclusion and consideration of individual factors when developing budgets, recognising that functional capacity alone does not determine need, and acknowledging that equity is not achieved by providing the same to all, but by ensuring support is available for all, based on needs and aspirations.

During our consultations, there was considerable discussion about whether plan budgets would be at an appropriate level. Some respondents expressed concern that funding might be inadequate for needs, others reported experiences where a plan had been built and submitted, based on a participant’s goals and needs, but the cost of supports fell below a typical support package.

Case study

Two males in their early twenties, both granted access to the scheme based on the functional impact of an intellectual disability. Person A speaks English as a first language, has a large number of informal supports who are armed with a strong knowledge of the NDIS, disability supports and community and mainstream services in their area. Person B is a recent immigrant from a CALD background and speaks limited English, lives with a parent who also has a disability in a reciprocal caring arrangement and has few other informal supports. Person A has a degree of insight into their disability whereas Person B does not have an understanding of the concept of disability or rejects the label when applied to them.

In Person A’s independent assessment, they are able to answer questions about their ability to complete daily activities, access the community, gain and maintain employment and manage social situations etc … with some alacrity. Their informal supports are able to complete the sections assigned to them with relative ease and clarity around the strengths and weaknesses of Person A and the supports they need to lead an ordinary life. As a result, the level of funding for Person A in their plan reflects their circumstances and level of need to work towards their goals.

In Person B’s independent assessment, they answer the questions put to them based on their belief of their own abilities in these areas. Their informal support does the same, though both have limited comprehension of the questions asked and the reason for them. As a result Person B receives substantially less funding than Person A.

The experience could be similar for people whose carers do not have an acceptance or understanding of the disability that a person engaging with the NDIS is living with. For people with

limited or no informal supports, there is a very real risk of them not engaging in the independent assessment process, leading to them being exited from the scheme. While we note that exemptions will be made when an independent assessment might pose a risk to safety or an assessment is deemed inaccessible or invalid, this decision is not a reviewable one, meaning that the access process would need to be restarted in order for this person to receive support in future.

We hope that the algorithm that sits behind this approach is sufficiently nuanced to deliver on the NDIA’s commitment to equity, but given the limited information available, we are deeply concerned that people will be left with insufficient funds for their needs and no recourse to have this corrected.

We suggest that confidence in the use of IAs to determine plan budgets will be improved if an evaluation of the tools is published to confirm that they can be used to reliably predict the amount of funding required to meet support needs. The development of specific assessments that are designed for the purpose of determining funding levels should also be considered as part of the rollout plan. We would also recommend a comparison be made with current processes to determine whether the IA outcome significantly differs or improves accuracy of individual budget decisions. If not then it should be considered that the additional cost to the agency to deliver IAs and the potential trauma and inequity for participants would not be worth proceeding.

6 The circumstances in which a person may not be required to complete an independent assessment

Under the proposed Access policy, a person with disability cannot choose not to complete an assessment, or it will be treated as a withdrawal of an access request.

The proposed policy to remove the rights of refusal to complete an assessment for access to scheme represents a denial of the rights of people with disability and an erosion of the principles of the scheme.

This policy fails to take account of the extenuating circumstances and stresses that may lead people with disability and or their carers to withdraw from the assessment process.

It does not acknowledge or specify the forms of support that some people with disability and/or their carers to engage in the assessment process. In BSL’s experience some participants need several contacts, outreach and support to build their capacity before managing the demands of a pre-planning meeting that typically takes 1 to 1.5 hours. The independent assessment is expected to require three hours, yet there is no reference to support for those who struggle to attend or to complete the significantly longer and more rigorous demands of an independent assessment.

We support the possibility of a delegate granting exemption from independent assessment where ’individual circumstances may mean it is not possible or reasonable ’to complete (NDIS,2020(1)p21), but believe this should be a reviewable decision. The consequences of the decision to proceed where there are identified risks that a delegate considers don’t meet the standard for exemption could be significant for a participant or an assessor.

7 Opportunities to review or challenge the outcomes of independent assessments

The inability to review and appeal IAs and associated decisions is in conflict with the Principles of the National Disability Insurance Scheme (NDIS) Act 2013, and erodes the rights of people with a disability:

It erodes the capacity of people with disability to exercise agency, choice and control, These rights are enshrined in the National Disability Insurance Scheme (NDIS) Act 2013, which affirms that people with a disability (alongside their families and carers) can ‘determine their own best interests and make decisions that affect their own lives’ (NDIS Act 2013, s. 17A (1)).
Denying the right to review and appeal IA decision risks compromises the quality (rigour, accuracy, effectiveness) of the assessors, the assessments and related tool and processes as they are not subject to critical scrutiny by people with disability and their carers. It also removes the opportunity for policy and practice reform based on learning from frontline practice
It reduces the accountability of NDIA to people with disability by not enabling transparent decision-making processes that are subject to scrutiny;
It disproportionately increases the accountability of people with disability and/or their carers to effectively demonstrate functional capacity with an unknown assessor, and an unfamiliar and challenging assessment process.

People with disability must have the right of review of the results of an independent assessment, and full assessment results must be available to participants via the participant portal without a requirement to lodge an administrative request. The documentation should be provided in a format consistent with participant’s communication preference (e.g. email, letter, braille) and there should be support available for participants to access and interpret the assessment results.

The requirement for third parties

The mandatory requirement for third parties erodes the principle of the scheme articulated in the NDIS Act ‘people with disability are assumed, so far as is reasonable in the circumstances, to have capacity to determine their own best interests and make decisions that affect their own lives’ section 17A(1)).

Third party participation may be essential in certain circumstances according to those consulted. However, there is a need for clear rules and regulations for use of third parties.

Feedback from participants who have completed the trial to date indicates that the requirement for third party completion of the Vineland assessment was a clear expectation. However, there is no clarity in the discussion paper about how the results of the Vineland will be used or how inconsistencies between the information provided by the person with a disability and the third party will be managed when determining access and plan budgets.

The ‘support for decision making policy’ should as a minimum:

Specify that a person who has the capacity to represent themselves does not require a third party for an independent assessment
Include criteria for determining who may require a third party to support their assessment results
Include criteria for determining how much of the assessment can be completed by a person who knows them well
Provide guidelines about what will occur when a person has no informal supports, noting whether this will impact on the outcome of the assessment.

References

Australian Institute of Health and Welfare 2017, National Health Workforce Dataset, accessed 15 February 2021, https://www.aihw.gov.au/about-our-data/our-data-collections/national-health-workforce-dataset.

National Disability Insurance Scheme 2020 (7), NDIS Quarterly report to disability ministers 31 December 2020, accessed 20 February 2021, https://www.ndis.gov.au/about-us/publications/quarterly-reports.

Parliament of Australia 2020 (2), Joint Standing Committee on the National Disability Insurance Scheme NDIS Workforce Interim Report, accessed 15 February, 2021, https://parlinfo.aph.gov.au/parlInfo/download/committees/reportjnt/024501/toc_pdf/NDISWorkforceInterimReport.pdf;fileType=application%2Fpdf.

Productivity Commission 2011, Disability care and support, report no. 54, Productivity Commission, Canberra.

Productivity Commission 2017, National Disability Insurance Commission (NDIS) Costs, Study Report, Canberra.

Tune, D 2019, Review of the National Disability Insurance Scheme Act 2013, Department of Social Services, accessed 15 February 2021, <https://www.dss.gov.au/disability-and-carers-programs-services-for-people- with-disability-national-disability-insurance-scheme/review-of-the-ndis-act-report>.

Attachment: Participant experience of Independent Assessment

Experience of Victorian scheme participant as reported to BSL.

They rang at 3 pm on the day before the assessment, and asked can I do it at 9 am tomorrow. I said that wasn’t much notice and asked if I could do it later in the day, but they said no, they only had this option available. I felt like I needed to be there, there was no other option. I had to cancel [work commitment]. There was no suggestion of we could do it another day.

The assessor rang to confirm two hours later, and my wife answered. She passed the phone to me, and the assessor just said ‘Hello?’. She sounded like a friend in distress, and I thought, oh my god, what’s wrong? There was no introduction of who she is or where she is from.

I didn’t know what to expect but went in to it with an open mind. As an LAC, I was thinking how would a brand-new person experience this.

She was a young OT, and began telling me this was her first-ever assessment. She said her supervisor would sit in, but he came half way through. My training says never say this. We know it’s a trial so there isn’t a lot of experience.

I was at home, and my internet connection is fast, but there were delays and her connection was not good.

She read out some information about stored on servers in Canada for privacy reasons but no information about how this was used.

She gave me a rundown on the tests. She said the Vineland needed a family member or carer. In the paperwork, it mentioned needing to talk with someone but no clear impression, and I thought they would call later. When they planned it yesterday, they didn’t refer to the need. My wife had gone to work, so they didn’t do it.

At the start, she said she needed to see me doing things around the house. I had a desktop computer, so I asked how it would work. The information didn’t say to be on a mobile so they could follow. She left it until the supervisor joined. He said to go and make coffee and bring it back, but I said they wouldn’t see how I did it. They asked me to get a book from the shelf, and said that’s ok, but the paperwork said 20 minutes observation.

She had no information about my disability, just that it was a physical disability. She didn’t ask if there were other things. I have [additional issues] as well as my [physical disability]. Having so little information seemed like a lack of courtesy. I think they need at least person’s name, circumstances, disability type and some basic information, and especially if they were dealing with an intellectual disability, some notes would be vital.

I felt that the answers were not giving a good reflection of my disability. Questions asked about last few days but we have been in lockdown. Last 30 days, last 12 months are during COVID. They don’t give an indication of what I can do.

She was reading off the screen, and kept going out of the frame which was very disconcerting. There was no extra information, and no time to build rapport. I volunteered extra information but I got a sense she just wanted me to give the no/mild/moderate response. She had handwritten flash cards which she held up to the screen and that was disconcerting.

Tests seemed repetitive, asking same questions over and over. I know some participant will crack it and say I’ve already told you.

The scheme for life, and this process don’t match up.

Questions were loaded, and I felt if I answered them the wrong way, my funding would be reduced. It didn’t give me confidence.

I’m interested in seeking the results, everyone in the office wants to have a chat.

I kept thinking how will it work as an LAC? We will be copping plans with no information, no goals, no statement, no questions about daily life.

There were questions: how is your sexual function? with no warning, no introduction. Are you continent? No preamble or context and I wasn’t expecting those questions. I’m getting older and things don’t work as they did. There was no teasing out of whether disability-related or another cause.

The scale gave no examples and was hard to rate, with no options in between. None/Mild/Moderate.

Big problem or a little problem - how does that matter?

There was no teasing out to get the right answers, and that’s a big part of it. Literally got the question and nothing else.

The jargon needs interpreting by the assessor, if it was a first interaction, it would be very disconcerting. I have a really strong understanding of health and disability, and I felt like laughing, but from anxiety. People will either want to cease or have increased anxiety.

Did not give me any incentive to value the experience. I’ve always felt there was a need for consistent individual assessment for people to get access, but this is not it.

My wife was called the next day to ask her to do the Vineland tool, she advised her only time available is Tuesdays. I work from home on Tuesdays and she wanted me close as she is not confident with video conferencing.

I received an email confirming that the appointment for her would be on Monday. She has a dentist appointment at this time so had not agreed to that.

I attempted to call the supplied number to point out the error and the number kept asking to press 1 for appointment issues, but then just goes blank for a few mins and repeats. I tried three times and gave up.