NDIA Accountability Project

Impact of NDIS amendments on individuals with MS and PTSD

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Good morning

I am supporting individuals with disability and others to submit their submissions to the NDIS Amendment Bill.

Ccing this to some others to ensure they go through in time.

The first of these submissions is from The NDIS Rights Group.

It reads as follows:

Submission from: The NDIS Rights Group

Via Free and Equal Australia

Stories of Impact: A Collection

Introduction

These stories are not about real people, but they reflect the real-life experiences of many NDIS participants who receive funding for services from the Scheme.

Their stories are drawn from hundreds of accounts that disability advocates hear every day. We’ve taken the amended legislation and used these circumstances to explore what could happen under the NDIS Amendment Bill, especially in the absence of any Rules or detail being developed.

This Bill will harm people with a disability, and in our opinion, should not pass.

Sonia’s Story: A Case Study Illustrating the Dire Consequences of NDIS Amendments

Sonia is a 29-year-old queer woman who lives in an inner-city apartment. She has multiple sclerosis (MS), post-traumatic stress disorder (PTSD), and a history of sexual assault. The NDIS has been a lifeline for Sonia, providing her with daily living supports, counselling, and specialised care that acknowledges her unique needs and helps her live independently. However, the proposed changes to the NDIS threaten to dismantle the support network that has been essential for her well-being and safety, leading to catastrophic consequences.

The Changes and Their Impacts

Inflexible Support Options: The amendments allow the NDIA to force participants to use specific supports regardless of their suitability or availability. Sonia is assigned a support

Sonia’s Story

agency that lacks the expertise to manage her MS and mental health needs. The support workers provided by this agency are poorly trained and unable to offer the specialised care Sonia requires. Despite Sonia’s explicit request for female support workers due to her history of sexual assault, the agency frequently sends male workers. This situation triggers Sonia’s PTSD, causing severe anxiety and panic attacks.

Creation of Two Classes of Participants: The amendments create a two-tier system where some participants must rely on state or territory supports which are not adequately funded. Sonia, classified into the lower tier, loses her federal NDIS supports and is forced to rely on state-provided services that are insufficient and poorly coordinated.

Punitive Approach to Fund Misuse: The amendments introduce a punitive approach to managing funds, where participants can be forced to repay money if the NDIA deems it was misused. Sonia, who struggles with understanding the complex rules of fund management due to her cognitive impairments from MS, unknowingly violates these rules.

Demand for Private Medical Information: The amendments give the NDIA the power to demand all private medical information from participants without stating a clear reason, and participants cannot refuse. Sonia is required to provide comprehensive medical records, including sensitive mental health information, to the NDIA. This intrusion into her privacy feels violating and adds to her stress.

Conclusion

Sonia’s story vividly illustrates the devastating impact of the proposed NDIS amendments. The legislative changes strip away the essential supports Sonia needs to manage her complex conditions, leaving her vulnerable and isolated. Each amendment, while seemingly bureaucratic, has profound real-life implications for individuals like Sonia.

Jake’s Story: A Case Study Illustrating the Dire Consequences of NDIS Amendments

Jake is a 23-year-old man with spinal muscular atrophy (SMA), a condition that severely affects his motor functions and requires extensive support for daily living activities. He lives in a rural area with limited access to healthcare services and support providers. Despite these challenges, Jake has managed to live independently with the help of a dedicated team of support workers funded by the NDIS. However, the proposed changes to the NDIS threaten to disrupt the delicate balance of care that sustains his life.

The Changes and Their Impacts

Assessment and Review Limitations:

The NDIS amendments introduce a new framework for needs assessments with significant gaps in participants’ rights to receive draft assessments, provide input, and access replacement assessments if they are dissatisfied. For Jake, this means he has little control over how his needs are assessed and addressed.

Broader NDIA Powers and Safeguards:

The amendments grant the NDIA broad powers to impose conditions on how participants obtain supports, restrict flexible funding, and

override plan management choices without clear parameters and safeguards.

Oversight and Accountability:

The amendments fail to establish strong independent oversight measures to monitor NDIA decisions and identify emerging issues. This lack of accountability leaves Jake vulnerable to arbitrary decisions by the NDIA.

Methodology for Budgeting and Supports:

The shift from “reasonable and necessary supports” to “reasonable and necessary budgets” in the new legislation significantly impacts Jake. The NDIA imposes a fixed budget that does not account for the fluctuating nature of his condition or the high level of support he requires.

Conclusion

Jake’s story highlights the profound and life-threatening consequences of the proposed NDIS amendments. For Jake, these changes mean a significant decline in his health, increased dependency, and a loss of dignity and independence.

Darren’s Story: A Case Study Illustrating the Dire Consequences of NDIS Amendments

Darren is a 40-year-old Aboriginal man who lives in a remote town in Northern Australia. He sustained an acquired brain injury (ABI) from a car accident several years ago, which has significantly impacted his cognitive abilities and mobility. Darren relies heavily on the NDIS for support with rehabilitation, transportation to medical appointments in the city, and social engagement to reduce his isolation and help him lead a fulfilling life. However, the proposed changes to the NDIS threaten to dismantle the support structure that has been critical for his survival and well-being, leading to catastrophic consequences.

The Changes and Their Impacts

Demand for Information and the 90-Day Rule:

The NDIS amendments grant the NDIA broad powers to demand information from participants and revoke their status if they fail to comply within 90 days.

Punitive Approach to Fund Misuse:

Under the new amendments, the NDIA adopts a punitive approach to managing funds where participants can be forced to repay money if the NDIA deems it was misused.

Inflexible Support Options:

The amendments allow the NDIA to force participants to use specific supports regardless of their suitability or availability.

Liability for Support Coordinator’s Actions:

Under the new rules, participants can be held liable for actions taken by their support coordinators.

Conclusion

Darren’s story illustrates the devastating consequences of the proposed NDIS amendments. The broad powers to demand information and revoke status within 90 days, the punitive approach to fund management, the inflexible support options, and the liability

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for support coordinators’ actions all contribute to a scenario where vulnerable individuals like Darren are left without the necessary supports to live safely and independently.

Amira’s Story: A Case Study Illustrating the Dire Consequences of NDIS Amendments

Amira is a 35-year-old woman with multiple disabilities including cerebral palsy, epilepsy, depression, and anxiety. She lives independently in social housing with support from the NDIS for personal care, community access, and support coordination. Her life is a daily struggle to manage her complex health needs but with the support of her care team, she has been able to maintain her independence and dignity. However, the proposed changes to the NDS threaten to unravel the support network that has been critical to her well- being, leading to dire consequences.

The Changes and Their Impacts

  • Demand for Information and the 90-Day Rule: The NDIS amendments grant the NDIA broad powers to demand information from participants and revoke their status if they fail to comply within 90 days.

  • Decision on Main Disability Without Dispute: The amendments allow the NDIA to unilaterally decide a participant’s main disability without consulting them, effectively removing their ability to dispute this decision.

  • Funding Based on Main Disability: The NDIA’s decision to fund supports based only on what they consider the main disability further undermines Amira’s holistic care.

  • Punitive Approach to Fund Misuse: The amendments introduce a punitive approach to managing funds where participants can be forced to repay money if the NDIA deems it was misused.

  • Liability for Support Coordinator’s Actions: Under the new rules, participants can be held liable for actions taken by their support coordinators.

  • Inflexible Support Options: The amendments allow the NDIA to force participants to use specific supports regardless of their suitability or availability.

Conclusion

Amira’s story paints a harrowing picture of how the proposed NDSI amendments could critically endanger people with disabilities. The amendments fail to consider the interconnected and complex nature of disabilities, leading to piecemeal and inadequate support that exacerbates existing health conditions. For Amira, the consequences are devastating: severe physical and mental health decline, increased isolation, financial stress, and a profound sense of abandonment by a system designed to protect her rights and dignity.

Alex’s Story: A Case Study Illustrating the Dire Consequences of NDIS Amendments

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Alex is a 28-year-old non-binary person with autism, ADHD, and chronic pain. They live in a small regional town with limited access to specialist services and support networks. Alex has faced numerous challenges due to their disabilities and the lack of understanding and acceptance of their gender identity in their community. The NDIS has been a lifeline for Alex, providing them with the support they need to manage their conditions and pursue their goals. However, the proposed changes to the NDIS threaten to undermine the progress Alex has made and leave them without the critical support they require.

The Changes and Their Impacts

Assessment and Review Limitations: Under the new needs assessment framework, Alex’s unique challenges as a queer person with multiple disabilities are not adequately considered.

Broader NDIA Powers and Safeguards: The NDIA’s broad powers to impose conditions on support arrangements and restrict flexible funding leave Alex with few options in their regional area.

Oversight and Accountability: The lack of strong independent oversight measures leaves Alex with no avenue to challenge the NDIA’s decisions or raise concerns about the inadequacy of their supports.

Methodology for Budgeting and Supports: The shift to a “reasonable and necessary budget” approach further disadvantages Alex. The NDIA’s budget for Alex does not account for the higher costs of accessing specialised services in a regional area or the need for tailored supports that address the intersection of their disabilities and gender identity.

Conclusion

Alex’s story illustrates the severe and far-reaching impacts of the proposed NDIS amendments on marginalised participants, particularly those living in regional areas with limited support options. The failure to consider the unique needs and challenges faced by queer people with disability, the lack of flexibility and oversight, and the inadequate budgeting methodology all contribute to a system that fails to provide the necessary support for participants like Alex.

Afterword

These stories reflect the real-life experiences of many NDIS participants who receive funding for services from the Scheme. The proposed NDIS amendments strip away essential supports, leaving vulnerable individuals isolated and at risk. Each amendment, while seemingly bureaucratic, has profound real-life implications for individuals with disability. The only guarantee of safety is working together to design a scheme from the bottom up, not the top down; designing the detail in conjunction with people with disability. The Rules must not be left until after the legislation passes; there is too much danger for not only the NDIS but for people with disability ourselves.

**This Bill must not pass.

Thank you for reading our submission to the NDIS Amendment Bill.