Submission regarding the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024
I am writing this submission as the parent of an NDIS participant, as a person with a disability and as a Social Worker who provides clinical services to NDIS participants.
I am a member of the neurodivergent community, and it is this community who I support through my work. Therefore, I am aware of the many challenges facing individuals who are Autistic and those with complex psychosocial needs such as Dissociative Disorders & PTSD.
The NDIS Review heard from over 10,000 and received over 4,600 online submissions from both individuals and organisations. The recommendations and actions reflect the breadth of this consultation. It is therefore upsetting that the proposed Bill has not followed some of these carefully considered recommendations, often only implementing half of the recommendation leaving the real possibility of people with disabilities not receiving the support they require.
Concerns
As the Bill stands, very significant issues will be left to Ministerial Determinations, such as determining how needs assessments are undertaken; and setting the ‘method’ to work out funding amounts in a reasonable and necessary budget. This gives the Minister significant power with limited oversight by Parliament. There is currently no provision that mandates co-design by people with disabilities so the legislative instrument will be valid and enforceable even if the Minister does not consult.
The Bill says needs assessment tools will be used to assess a participant’s need for support. The Explanatory Memorandum says the tools will be highly technical and it will consult with the disability community and experts in creating the tools. However, these tools are to be determined by the Minister. The NDIS Review indicated the needs assessments should be completed by allied health practitioners with disability expertise, yet the proposed legislation does not specify who will conduct these assessments.
As an Autistic person I have often experienced clinicians and service providers making assumptions about my functioning based on what they observe when I am in the community. They don’t see the hours I spend at home in a nearly catatonic state after I have had my interaction with them. They don’t see me not leaving the house for days in the lead up to the appointment, making sure that I am emotionally regulated so that I can participate in the appointment. They don’t see the distress they cause when I am struggling with the situation and my attempts to manage my needs in that moment are called out as rude or disrespectful. They are not aware of the fact that I have had to completely change my life due to systems and environments that have resulted in trauma and autistic burnout for both myself and my child.
Recently I experienced a significant meltdown because of emotional distress. The acute part of the meltdown lasted approximately 30 minutes, during that time I was
There are many physical challenges I experience daily that can be attributed to conditions that commonly co-occur with Autism that fit the including Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome, and/or Hypermobile Ehlers-Danlos Syndrome. Unfortunately to date no medical specialists have been able to piece these symptoms together for a diagnosis. This lack of diagnosis is common for Autistic individuals who often report having their concerns dismissed by health professionals and their health needs being misunderstood, resulting in adverse health outcomes evidenced by reduced life expectancy.
I share these experiences to demonstrate the complexities of disabilities that are both invisible and involve fluctuating capacity. Under the Bill assessments will be carried out in as little as three hours by outsourced private contractors who are not known to the participant and will be using yet to be determined standardised tools. As a clinician I have concerns that it would be difficult to capture and fully understand the complexity I have outlined in these circumstances. Developing a complete and accurate understanding of the functional abilities of people with “invisible” or complex disabilities requires specialised skills and experience. With the needs assessment relying on standardised tools, it may fail to achieve a ‘whole of person’ approach by imposing artificial distinctions in the way a person with multiple and interrelated disabilities accesses supports.
Requiring people with disabilities to work with someone unknown to them will be difficult, even damaging, to those who have a history of trauma, abuse, or violence. This includes Autistic participants, many of whom have experienced trauma from medical gaslighting when health professionals minimise or disregard symptoms often due to communication or interoception differences. During my recent NDIS access meeting I was asked by a LAC within minutes of arriving why I need support because I am obviously ‘high functioning’ yet then admitted they hadn’t read my reports that did clearly document my support needs. Given that communication differences are a large part of my disability, and the stress of that meeting combined with the ableist attitude of the LAC made it impossible for me to explain my challenges at that moment, I had to request they obtain the information they needed from the written documents provided.
If this had been my needs assessment it would have resulted in an incomplete understanding of my needs along with me having experienced further trauma. Therefore, I would likely not receive appropriate funding for the support I require and the assessment process itself would result in me requiring an increased level of support. The current Bill does not make it clear if or how support would be provided after such an experience.
The needs assessment process outlined in the Bill relies on additional people taking part in the assessment, such as a family member or carer. I am aware of participants
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for whom this is not appropriate, due to complex family dynamics, and the inclusion of them in the assessment process may be detrimental for the participant. There are other participants who have no-one in their lives who can give accurate, reliable, or independent information. The proposal to repeat the needs assessment process at different life stages and at least every five years will create additional stress and anxiety for participants and their families who are already vulnerable because of their disability.
The NDIS Review explicitly said the needs assessment report should be provided to the participant before it is finalised. The proposed Bill does not currently ensure a participant can see the needs assessment report before it is ‘given to the CEO’ and participants will not be given a copy of the full assessment report unless they apply to see it. Given the amount of incorrect information that I have found within participants current NDIS plans it is extremely concerning that participants will not be given the opportunity to identify any errors in their assessment prior to it then being used to determine funding.
A ‘needs assessment’ would not be a ‘reviewable decision’ so it could not be reviewed through either an internal or external review. This means the Bill does not provide a way for a participant to challenge an inappropriate needs assessment – and therefore to prevent an inadequate budget being set based on that needs assessment. How the assessment results will be used to do this has not been explained and results of any modelling or testing have not been made publicly available. Using assessment tools that are designed for screening or assessing functional capacity to determine an appropriate level of support and allocation of funding is however untested and untried. This is especially concerning given there will be very few circumstances where the plan and budget can be changed after the assessment is complete.
It is proposed that the NDIA can request any ‘information that is reasonably necessary’ or ask a person to undergo a medical assessment. If the person does not comply within 28 days without a good reason, both their existing NDIS plan and upcoming new NDIS plan will be suspended until they comply with the request. The consequences of not complying are also potentially severe for participants. This element of the legislation can easily result in vulnerable participants being coerced into complying with requests that make them feel unsafe or lose trust in the clinicians who are currently supporting them.
The criteria regarding what is considered an NDIS Support are based on selected elements in the United Nations Convention on the Rights of Persons with Disabilities (‘CRPD’). Yet they leave out other elements of the CRPD including choosing who someone lives with or where they live and the right to work and employment. Therefore, the Bill may exclude some support that would specifically facilitate a participant’s economic participation or allow them to live alone from NDIS funding.
An NDIS that serves all Australians with disability will be stronger and fairer if it upholds the rights and respects the dignity of people with disability, involves people
with disability and their families in all stages of the assessment and decision-making process, and is free from conflict of interest and bias. Unfortunately, the current Bill has significant gaps that may result in negative outcomes for all of these aims.
Recommendations
Provisions are required to make sure all Rules and determinations are developed in close consultation with people with disabilities.
The Government’s commitment to develop delegated legislation following ‘genuine consultation with the disability community’ should be reflected in the NDIS Act.
Information-gathering powers need to be limited, including greater limits on the type of information that can be requested, and restrictions on the negative consequences of failing to comply.
Review of criteria for NDIS support to ensure that participants will be supported regarding all elements of the CRPD.
Needs assessments must be legislated to be completed by allied health practitioners including psychologists, social workers & occupational therapists.
The outcome of the needs assessment must be a reviewable decision and there needs to be a process to request a new needs assessment where appropriate.
If needs assessments are to be used as the basis for setting budgets, legislation must provide clear and straightforward rights for a participant to receive the needs assessment before it is finalised to ensure it accurately reflects their needs and circumstances,
Undertake an evaluation of the current pilot of the new assessment process, independent of the NDIA, led by experts and co-designed with people with disability, their families and the organisations that support them.
Undertake independent and transparent trials of alternative approaches to improving consistency in access and planning – such as allowing a person’s existing health professionals to complete assessments using the tools selected for the proposed needs assessments.
Engage in a meaningful co-design process with people with disability, their families and the organisations that support them to ensure a fair and consistent approach to both access to the scheme and planning and to ensure people with disability receive the support they need.