Dear Senate Committee Members:
Re Submission on the National Disability Insurance Scheme Amendment (Getting the NDIS Back On Track Bill) 2024
Introduction
I am writing to you to express some of my concerns with some of the proposed amendments to the NDIS Act, as set out in the Bill currently under review by the Senate. I write from the perspective of being a former Physiotherapist (practising clinical physiotherapy and having a long-standing academic career in physiotherapy prior to the introduction of the NDIS) and currently as a legal practitioner.
I have had significant experience with people with disability, particularly people with chronic, lifelong disability, and have had opportunity to see and hear firsthand the challenges faced by them. A particular challenge I have observed is the stress associated with seemingly constant revisions to the funding framework which in turn leads to a great deal of anxiety and stress by the person being funded. The concern expressed is generally that the person is in fear that they will lose their funding, even if they have a chronic lifelong and unchangeable disability. This stress peaks in the lead up to renewal of funding plans, and for the participant to be in the position to have to yet again negatively focus on their disabilities and justify funding needs in the circumstance where the sometimes profound disability is lifelong and unchanging in its effects on the person’s life.
I have also observed the very positive effect that NDIS funding has had on the lives of people with profound disability, leading to increased self-confidence and the ability to achieve goals to be as independent and connected to the community as is possible.
As response time for the submissions is limited, I will focus my concerns with the Bill on two aspects:
- The potential adverse effects of the removal of the reasonable and necessary criteria underpinning the funding to introduce a reasonable and necessary funding budget framework which could so easily lead to arbitrary guidelines for supports funded by the NDIS, which can be changed at any time by the Government; and
- The introduction of Needs Assessments, with little to no information available about the measuring instruments to be used.
In particular, I am concerned that the proposed removal of the Reasonable and Necessary criteria in section 34 of the current Act to be replaced by guidelines which can be changed at any time by governments and the introduction of needs assessments may not adequately consider individualised circumstances.
Removal of the Reasonable and Necessary Criteria to be replaced by a list of supports
The Reasonable and Necessary criteria currently in section 34 of the current National Disability Insurance Scheme Act 2013 (Cth) have been in place since the scheme was rolled out and have provided people with disability with the opportunity to live ordinary lives. The reasonable and necessary criteria mean that an individual’s circumstances are required to be considered in all decision- making. This means that a support which is reasonable and necessary for one NDIS Participant may not be reasonable and necessary for another NDIS Participant. For example, while one Participant may be a person with complete paraplegia who requires a wheelchair, a Participant with hearing loss only would have their circumstances assessed separately and individually to take account of their needs and to develop a package of supports that meets their needs. I have three primary concerns around
Concerns about the Removal of Reasonable and Necessary Criteria
The removal of the reasonable and necessary criteria to be replaced with a list of supports that can and cannot be funded and which can be updated at any time:
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Likely lack of consideration of individual circumstances: arbitrary rules – which necessarily imply a one-size-fits-all approach – cannot take account of the complexity and variety of people’s needs. People with disabilities, like all people, have unique and different needs, which need to be considered wholistically – taking account of many factors including the person’s level of functioning; environment and supports around the person, among many other factors. The removal of the reasonable and necessary criteria in favour of lists of blanket supports will standardise supports provided, which is likely to result in insufficient or ineffective supports for Participants, particularly those participants with the most complex disability needs;
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Diversity of experiences: the needs of people with disabilities are complex, diverse and influenced by many factors. For example, factors such as the functional impacts of a person’s disability; their choice of lifestyle; availability or not of informal supports; personal goals; and other environmental factors will impact the disability supports a person needs. Arbitrary rules do not reflect diversity and are likely to lead to inequities, such as people with the most complex disability support needs missing out on supports. This will not support or enable people with disabilities to continue to live an ordinary life;
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Lack of certainty – having a list of supports that can be updated or changed at any time by the CEO or Minister means that supports funded by the NDIS can be altered at any time and with little or no warning to participants. This results in unreasonable control of governments over the lives of people with disabilities and the consequent uncertainty for people with disabilities would cause significant stress and prevent people from living an ordinary life.
Concerns about the Introduction of Needs Assessments
I have five primary concerns about the introduction of needs assessments:
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Failure to consider individual circumstances, meaning that the diversity of the needs of people with disabilities cannot be adequately considered, which is likely to result in inadequate supports, preventing Participants from achieving their goals;
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The lack of standardised assessments verified internationally that can assess what a variety of different people require to participate socially and economically, or the lack of validity of available assessment tools for any particular individual.
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The likely lack of clinical experience and knowledge of people who are applying the likely flawed assessment tools. The tools that are commonly used to measure function, for example, must be tailor made to encompass the specific abilities and disabilities of some complex and profound disabilities. In clinical practice, where tools are used by people with appropriate clinical skills, judgments often need to be made as to whether a particular tool needs modification to better capture the needs of a particular person. My concern is that NDIS may utilise non clinicians, or clinicians with inadequate judgment skills, who will likely make decisions that are not valid (i.e., measuring what is meant to me measured), and yet can influence the future of that particular individual. The balance needs to be struck between the use of a standardised tool for non-standardised people, and the contribution of the person with the disability to articulate and identify the specific needs they have, albeit these do not fit into the standardised assessment.1 The assessment tools and the assessor need to be up to the task. This is straightforward in some circumstances, however, in a very large scheme such
Conclusion
I understand the need to have an economically viable NDIS into the future. I understand that the government has a particular view on how this is best achieved. I understand that consultation with participants is planned, however, am yet to be convinced that this will be genuine and thorough consultation that in reality has a reasonable chance of influencing the future of NDIS.
Australia should be proud of creating the NDIS scheme, with the aims of allocating support on the basis of the participant identifying their goals as a basis for provision of reasonable and necessary supports to assist participants to achieve their goals and live a fulfilling and fully interactive life.
The proposed amendments to the NDIS legislation – particularly to remove the reasonable and necessary criteria and to introduce needs assessments – are of great concern. These amendments do not adequately take account of the individual needs and complex and varied needs of people with disability throughout Australia. To ensure that the NDIS remains an equitable and person-centred scheme, it is crucial that the flexibility and individualised approach of the reasonable and necessary criteria are maintained. Please reconsider these proposed amendments and focus on the scheme remaining flexible and individualised to benefit current and future generations of Australians.
Elizabeth Gass
12th July 2024
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