Submission to the Joint Standing Committee on the National Disability Insurance Scheme’s (NDIS) Inquiry on Independent Assessments

March 2021

Achieve Australia welcomes the opportunity to make a submission to the National Disability Insurance Scheme (NDIS) Joint Standing Committee’s inquiry into the proposed use of independent assessments under the NDIS.

The National Disability Insurance Agency (NDIA) and the Minister for the NDIS have stated that independent assessments are being introduced to improve equity and consistency in decision making, to ensure alignment of funding with individual capacity and need, and to give participants choice and control over the supports they need. However, Achieve Australia believes that independent assessments, as currently proposed, are a blunt tool which will increase inequities, decrease participants’ choice and control and undermine the aspirational requirements of the NDIS Act.

Achieve Australia (Achieve) is a for-purpose community organisation that has been providing housing and services to people with disability since 1952. We champion social inclusion, focusing on the individual needs and lives of the people we work with. Achieve is an NDIS registered provider and delivers expert disability support services around our offices and hubs in greater Sydney and the Northern Rivers regions of New South Wales.

Achieve is firmly of the view that the primary stakeholders in this feedback process are people with disability. In our submission we do not seek to speak for our clients, rather we offer the perspective of an organisation that observes how current arrangements both enable and significantly compromise the rights and wellbeing of people with disability.

Independent Assessments of Achieve Australia Clients: a practical experience of independent assessments

Family members of Achieve Australia clients have recently participated in trial independent assessments and have expressed concern about the findings and recommendations contained within those assessments.

Achieve is of the opinion that these assessments illustrate structural limitations in the design and operation of the proposed independent assessment scheme. Achieve further believes that independent assessments will undermine inclusivity, equitable access, consistency, transparency and participant choice under the NDIS, the very issues that independent assessments purport to address.

In late November 2020, two of Achieve’s clients, David and Nadira, were assessed via the independent assessment scheme. These individuals have significant and complex intellectual disability and disability-related chronic illnesses which require a broad range of intensive supports from a number of specialists. Both of these clients had undertaken a comprehensive independent needs review in the

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year before the independent assessment. Despite the existence of this evidence, the participants were required to undergo further standardised assessment under the independent assessment scheme.

The reports from the independent assessors contained a number of errors and misunderstood the support needs and model of care required by David and Nadira.

The factual errors included:

Misstating that Nadira had a jejunostomy or PEG when she actually requires a gastro- junostomy (often referred to as a G-J Tube). There is significant difference in the knowledge, daily management and care required for a G-J tube compared to a PEG.
Asserting that G-J tube changes could be done by a registered nurse. Changes to a G-J tube can only be done in hospital.
Inaccurately representing Nadira’s access to education.
Omissions such as, a failure to mention or include chronic pain management, overnight care and support, as well as hydration in the assessments. Each of these are essential for the everyday health and wellbeing of both David and Nadira and their omission is of deep concern.

In addition, a number of recommendations were made, such as:

reducing daily, short chest physiotherapy sessions by a qualified physiotherapist to 30 sessions per year (without justification for arriving at this number), with all other sessions delegated to disability support workers. This delegation is despite the fact that David in particular becomes acutely distressed during his chest physiotherapy, his vital signs (pulse, respiration rate and oxygen saturations) vary significantly and require an advanced level of rapid clinical decision making to keep him stable and enjoy the great benefit that this short procedure offers.
delegating a range of care practices with a high level of clinical decision-making and/or intervention currently provided by a registered nurse, to a disability support worker. The clinical decision-making is beyond the scope of practice for disability support workers.

The recommendations made within these independent assessments have the potential to be dangerous and life-threatening. At best, the recommendations apply a non-differentiated approach that assumes that disability and therapy is a universal experience. The reports and recommendations overlook the individuals, their experience of their disability and their context.

It is difficult to understand how one-off independent assessments by a person unknown to the participant over a period of several hours are able to accurately assess the short, medium and long- term impact of individual treatments or the influence of specialist staff on functional capacity. A one- off, snapshot assessment of functional capacity is unlikely to capture the context which enables that functional capacity. Nor is it likely to capture an accurate reflection of functional capacity for those whose experience of their disability fluctuates.

Misunderstanding the enabling context of a participant’s functional capacity is likely to lead to recommendations which undermine a participant’s ability to realise their individual goals and aspirations as protected under the NDIS Act and could lead to a reduction in functional capacity.

Expertise and Experience of Independent Assessors

For example, the independent assessments shared above recommended reducing daily chest physiotherapy sessions provided by a physiotherapist to just 30 per year, with the remainder delivered via a delegated model of care. Yet, both David and Nadira have experienced a reduction in the number of hospitalisations, including for a chronic lung condition, since accessing their current level of care, which includes daily chest physiotherapy from a physiotherapist. This outcome is valuable to both individual quality of life and reduces the use of state resources associated with hospital admissions. The reduction in hospitalisations does not indicate that specialist therapy should be discontinued or changed. Rather it validates the success of the current approach.

Expertise and experience of independent assessors

The broad thrust of both of these independent assessments was to reduce the amount of specialist care provided and instead increase reliance on (less expensive) disability support workers via a delegated model of care. The changes suggested in the independent assessment indicate a lack of expertise on the part of the independent assessors in working with people with profound intellectual disability and highly complex disability-related support needs.

Some of the recommendations to delegate care tasks to disability support workers indicate an inadequate understanding of the level of clinical decision-making involved in these practices. Delegation of these tasks would require clinical decision-making that is beyond the scope of practice for disability support workers. When it is considered that the provider retains moral and legal responsibility to employ suitably qualified staff that match the care and support needs of its clients this delegation is worrisome.

The recommendations also indicated a lack of knowledge of the corresponding model of care needed to ensure that David and Nadira’s health and wellbeing is maintained at an optimal level to enjoy the best quality of life possible. It appeared that the model of care the assessors drew from, and which informed their recommendations, more closely resembled an attendant care, at-home, self-managed rehabilitative support model which is inappropriate for NDIS participants with permanent and significant disability.

The expertise of the assessors and the organisation they work for was not clearly established in the reports. Though on the list of approved assessors, their expertise in working with people with significant and complex disability and health issues is not apparent.

Independent assessments will be a key source of information used to assess both eligibility and budget for NDIS plans. Due to the importance of the independent assessment on both access to the NDIS and individual plan budgets, participants and their support networks must be confident in the ability of the independent assessors to engage in a knowledgeable assessment of the participant. Independent assessors who lack the specialised knowledge and expertise needed to assess an individual with disability undermine the credibility of the NDIS.

As companies who are registered to provide independent assessments are not permitted to carry out assessments in areas where they provide NDS services, it would seem that lack of specialist expertise and experience is part of the design of the independent assessment scheme. Although this approach avoids obvious conflict of interest, it also appears to specifically reward lack of experience and expertise.

Equity and Choice

One of the key issues that the independent assessment scheme seeks to address is equity of both access to the NDIS and appropriate levels of support once a part of the NDIS. The NDIA notes that in limited “exceptional circumstances” independent assessments will not be required.

As independent assessments rely on a short, standardised assessment by an individual unknown to the participant, those who “know the system”, who know how independent assessments work, the tools used and appropriate answers to the questions asked during the assessment, will have an advantage over those who do not. In essence, an advantage similar to that already enjoyed by some under the current operation of the NDIS who have financial or other support resources.

We note that research conducted by Professor Christine Bigby (2020) of La Trobe University found that - in the context of the NDIS - people with intellectual disability achieved poorer outcomes because of the scheme’s dependence on the ability of participants to articulate their needs. As Professor Bigby notes, people with intellectual disabilities often have greater reliance on social and contextual factors to make their needs known. This research suggests that independent assessments will be an inappropriate tool for people with intellectual disability.

Independent assessments over a matter of hours using standardised tools rely on the ability of participants to articulate their needs and are exceptionally unlikely to accurately capture social and contextual factors. As independent assessments will be pivotal to the admission of the individual to the NDIS or the allocation of funding to an NDIS plan, those with intellectual disability are likely to continue facing poorer outcomes from the NDIS.

Instead of improving equity, the proposed independent assessment scheme simply moves the experience of inequality. Those who are already the most vulnerable, those who cannot advocate on their own behalf, those who are without financial, family or other support resources and those from marginalised communities will remain excluded and disadvantaged.

The NDIS reinforced the principles of choice and control as a cornerstone concept. Achieve is of the opinion that independent assessments remove choice and control from the participant. NDIS applicants and participants should be able to choose their assessment provider. For many people with disability, building up trust and rapport with their therapy and support teams is a process that is essential to identifying the most appropriate and effective therapy for them. Trust and rapport will also be, for many, a critical component to enable them to understand and complete an assessment. For both applicants to the NDIS and those who are already in the system, trust should be valued as an indispensable element of the assessment process.

Rather than allocating NDIS resources to fund independent assessments by unknown providers,

assessments themselves should be funded by the NDIS. Funding assessments by a provider of choice will reduce inequality of access and increase the personalisation of the assessment process resulting in individually appropriate NDS plans. Personalised, appropriate and effective plans are essential to suring NDIS participants are able to achieve their individual goals and aspirations.

Opportunities to review or challenge the outcomes of independent assessments

Achieve is concerned by the lack of a clear review or appeal process for independent assessments.

The default position for independent assessments is that full reports are not shared with participants unless requested. This approach privileges participants who have greater resources or a better capacity to understand and navigate the independent assessment process. Furthermore, the requirement to request assessment reports places the responsibility for transparency and accountability on to the NDIS participant rather than the NDIA.

The independent assessment itself is not able to be reviewed or challenged. Rather independent assessments are a key source of information used to by the NDIA to determine eligibility and resource allocation to NDIS plans. Participants are able to request a review or appeal a decision made by the NDIA if the participant feeds that the decision is wrong.

The fact that the default position is that full reports are not shared with participants and that there is no appeal process against the information and conclusions reached in independent assessments, amounts to a lack of procedural fairness.

Despite a stated aim of increasing access and transparency, the structural issues of the independent assessment process and the lack of opportunity to challenge the findings and recommendations of independent assessment reports, leads to concern that independent assessments could become a key reason for requests for internal reviews and appeals to the Administrative Appeals Tribunal (AAT).

Independent assessments - a blunt, simplistic approach

The disability community has worked diligently to ensure that those within the community are seen as people with disabilities, rather than be defined by their disability. This approach ensures that the goals and aspirations of people with disabilities are at the forefront and medical diagnosis is in the background. This is at the core of the NDS Act. The narrow focus on functional capacity and the very short timeframe used in the independent assessment process leads to concern that people will be defined and measured by their diagnosis.

The two assessments shared in this submission illustrate the potential for independent assessments to potentially have a detrimental impact at the individual level. These examples also illustrate how independent assessments can actually undermine the intentions of the NDIA Act, restrict access to disability resources and increase the risk of further disadvantage and marginalisation of those who are already vulnerable.

Achieve Australia would welcome further dialogue on any aspect of this submission.