National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024
Submission 119
Parliamentary Submission from a Severely Affected MECFS NDIS Participant
Subject: Concerns Regarding the Proposed NDIS Bill
dear parliamentary committee members,
i am writing as a severely affected participant with myalgic encephalomyelitis/chronic fatigue syndrome (me/cfs) to express my concerns about the proposed changes to the national disability insurance scheme (ndis) outlined in the current bill. The following points address specific issues that could profoundly impact my quality of life and the adequacy of support i receive.
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Co-design Is Not Required The bills provision for the minister to consider co-design principles is insufficient. As someone living with me/cfs, my needs are complex and multifaceted. Without a legal requirement for co- design, there’s a significant risk that the voices and lived experiences of participants like me will not be adequately represented. Co-design should be a mandatory process to ensure that the ndis truly meets the needs of all participants.
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Lack Of A Whole-of-person Approach Me/cfs affects multiple systems in the body and often coexists with other conditions, making a comprehensive, individualised approach essential. The bills failure to mandate that the ndis is responsible for funding us as a whole-of-person approach could result in fragmented and inadequate support. For individuals like me, who require coordinated services and have a functional impact that is greater as a whole than the sum of its parts this oversight could severely compromise our health and wellbeing. Given the multi-faceted nature of me/cfs, capturing all impairments and needs through a whole-person approach is crucial to adequately managing the condition and ensuring that no aspect of our needs are overlooked. Failure to have adequate support would lead to deterioration of my condition, hospitalisation loss of quality of life and eventual suicide. Suicide is the leading cause of death for people with my condition. The support of the ndis literally keeps me alive and i rely on the care i receive to maintain any quality of life. It’s essential this process not become any more adversarial than it already is and that people with disabilities are protected from the constant fear of not receiving adequate funding or of having funding arbitrarily cut.
In short Needs assessments that do not fully understand the nuances of ME/CFS and risk severely under-supporting us. By only granting supports for impairments that meet rigid access requirements, the complex and interrelated nature of our needs may be ignored, leading to insufficient support that fails to address the entirety of our condition. This could result in harm and a deterioration of our health.
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Unclear Review And Appeal Rights The proposed bill lacks clear mechanisms for reviewing or appealing needs assessments. This ambiguity is particularly concerning for me/cfs participants, as our condition can fluctuate, necessitating frequent reassessments and adjustments to our support plans. Transparent and accessible review and appeal processes are crucial to ensure that our needs are accurately and promptly addressed.
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Broad Powers To Require Assessments Granting the ndia broad powers to mandate medical assessments poses a significant challenge for me/cfs participants. Obtaining such assessments can be extremely difficult due to the scarcity of specialists familiar with our condition and the physical and cognitive strain involved in attending appointments. Additionally, the stigma and misunderstanding surrounding me/cfs put us at serious
National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024
Submission 119
risk during forced assessments by professionals who may not fully understand or recognise the complexity of our condition. This requirement could lead to undue stress and delays in receiving necessary support, exacerbating our health issues.
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Limits on Support and Spending The Bill appears to give the NDIA excessive control over how participants utilise their funding. For ME/CFS participants, who often require a range of tailored support which is often out of the box thinking best suited to meeting our unique needs—such restrictions could undermine our ability to manage our condition effectively. The flexibility to allocate funds according to our specific needs is critical to maintaining our independence and quality of life.
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Punitive Measures The introduction of new powers for the NDIA to alter plan management and raise debts if funding is deemed misused is deeply concerning. The complexity of ME/CFS means that our support needs can be very broad and can change rapidly, what might be perceived as misuse could simply be a necessary adjustment to our support plan. Punitive measures would not only add stress but could also disincentivize participants from seeking the full range of supports they need. We should not live in the fear of punishment for trying to meet our daily needs. This has significant scope to be abused by the NDIS.
In conclusion, the proposed Bill, in its current form, raises significant concerns for ME/CFS participants within the NDIS. I urge you to consider these issues carefully and to incorporate mandatory co-design principles, a whole-of-person approach, clear review and appeal processes, and flexible support and spending options. By doing so, the NDIS can better fulfil its promise of providing adequate and personalised support to all participants.
Thank you for your attention to these critical matters.
Sincerely,