National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Submission 164

Hello,

I am writing to provide feedback on the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024. As someone living with a disability following a stroke and working as a disability advocate, I believe I can offer valuable insights into how the proposed changes will impact NDIS participants, including myself.

My name is Caleb Rixon, and my background includes:

   Founder of Genyus Network, which supports people with disabilities
    Collaborator on the Accessible Inclusive Geelong feasibility study (Chris Couzens)
   Consultant for Deakin University's Sexual Lives Respectful Relationships program
   Advisor for the Department of Health's COVID-19 Safety for People with Disabilities campaign
    Disability Inclusion Advocate ABC News
   Board Director of Occupational Therapy Australia
   Course Advisory Committee member for Occupational Therapy at La Trobe University
    Sessional tutor in Occupational Therapy at La Trobe University

Through my extensive professional experience and personal journey navigating the Disability Support Pension, i have gained deep insights into the needs and concerns of the disability community. While i understand the goal of improving the NDIS, my concerns about the proposed changes include:

1. Loss of Choice and Control The new framework’s predefined support categories will limit participants’ ability to choose supports that meet their needs. This is a real concern for me as i have seen how critical it is for individuals to have the autonomy to select supports that align with their unique circumstances and preferences. Restricting this choice undermines the core principles of the NDIS and can lead to feelings of disempowerment and frustration among participants.

2. Reduced Flexibility Separate funding allocations for specific supports will make it difficult for participants to adjust their plans as their needs change. Flexibility is essential for people with disabilities, whose needs can evolve. I have experienced the necessity of adapting support plans to accommodate changing health conditions and life circumstances. The proposed changes risk creating a rigid system that fails to respond to the dynamic nature of disability.

3. Increased Bureaucracy The bill aims to streamline processes but will introduce unnecessary complexity, particularly around plan development and reassessments. Increased bureaucracy can lead to delays and additional stress for participants and their families. As someone who has navigated the complexities of the disability support system, i know firsthand how burdensome and emotionally taxing excessive administrative requirements can be.

4. Impact on Mental Health Restructive policies and additional bureaucratic hurdles will lead to increased mental health challenges among participants, placing further strain on our healthcare system. Mental health is a critical aspect of overall well- being, and policies that add stress and reduce autonomy can exacerbate mental health issues. My work with Genyus Network has shown me the profound impact that supportive, flexible, and person-centred policies can have on mental health outcomes.

5. Potential Reduction in Sexual Agency The proposed changes will limit participants’ autonomy in expressing their sexuality and accessing professional services, which is crucial for overall well-being and quality of life. Sexual agency is a fundamental human right, and restricting access to sexual supports will lead to feelings of isolation and frustration. Through my consulting work on Deakin University’s Sexual Lives Respectful Relationships program, I have seen the importance of supporting sexual autonomy for people with disabilities.

National Disability Insurance Scheme Amendment (Getting the NDI Back on Track No. 1) Bill 2024

Submission 164

Impact on Genyus Network and Personal Life

As the founder of Genyus Network, I am concerned about the increased demand this bill will place on free support services like ours. If NDIS participants need more flexibility and support, they may turn to external organisations for help, stretching our already limited resources. This will directly impact my ability to effectively support those in need, including my friends and colleagues who rely on these services.

I believe that the proposed changes could significantly affect my quality of life and my ability to work effectively. The potential decline in quality of life for people with disabilities due to these restrictions may impact their ability to work effectively, including within disability-led organisations like Genyus Network.

Recommendations

I urge you to consider the following recommendations:

• Preserve choice and control: Ensure that any changes to the NDIS maintain participants’ ability to make decisions about their lives and supports.
• Prioritise flexibility: Allow easier adjustments to support plans as participants’ needs change.
• Simplify processes: Focus on reducing bureaucracy rather than adding layers of complexity.
• Protect sexual agency: Recognise the importance of sexual expression and maintain funding for related supports.
• Prioritise mental health: Reconsider all proposed changes’ potential mental health impacts and ensure adequate support is available.
• Engage in meaningful consultation: Work closely with people with disabilities, including those with lived experience, and on the scheme to refine and implement any changes.

Incorporating Lived Experiences

My published work, including a piece in Cambridge University Press, “Connection: Stories, not statistics”, imphasises the importance of narratives in enhancing the lives of people with disabilities. When systems reduce individuals to their symptoms, they perpetuate isolation and stifle potential. Stories evoke empathy, derstanding, and excitement, eliminating stigma and ending isolation. Sharing my journey and the experiences of others reveals the disconnection that often occurs due to the deficit-focused medical model of disability. For instance, my interactions with healthcare professionals who overlooked my primary concern— my voice—highlight the detrimental impact of not being heard. This reductionist approach exacerbates feelings of isolation and disempowerment and negatively impacts mental health.

Thank you for considering my submission. I am happy to provide more insights, voices, or information as needed to ensure the NDIS continues to serve as a beacon of hope and support for people with disabilities across Australia, providing the choice and control it promises.

Sincerely, Caleb Rixon

We acknowledge the traditional custodians of the land on which our business is registered; Wathaurong land (now known as Geelong / G-Town). Always was. Always will be.