Submission 2287

Submission to the Senate Inquiry into the NDIS Amendment Bill / NDS Reform

To the NDIS Committee,

I am a 36-year-old NDIS participant who has been receiving support through the NDIS for approximately five years following a stroke I suffered in the middle of the night sleeping in my bed. Prior to this, I had no major known health conditions and was living independently with full-time employment, my own car and plans for the future.

My life changed very suddenly.

My family’s life changed very suddenly.

Forever.

I appreciate the opportunity to provide feedback regarding the proposed reforms to the NDIS. I understand the importance of making the system sustainable and reducing fraud and inefficiencies. I support reforms that strengthen accountability and improve the quality of services. However, I also hope the government understands the real-life impact these supports have on participants rebuilding their lives after serious illness or disability. I have received help to write this letter so I could share my thoughts with you. If you would like further information I would be happy to talk further as letters are not so easy.

Life After Stroke

Following my stroke, I experienced major changes to my physical, cognitive and emotional wellbeing.

I was in Intensive Care in a coma for 3 weeks in the hospital for or transitional care for 9 months. I had world class medical care from the best specialists in Australia but I was still begging to come home. I had to relearn many daily living skills, including learning how to walk safely again, to speak and how to try and manage everyday activities that most people take for granted. Like remembering what you did 60 seconds ago or if you have already had lunch. I still call my family many times a day to remind me about things or what I’m meant to be doing. They have been my rock, always encouraging me and telling me that they are grateful I am still here. I love using ChatGPT, Alexia and other technologies to help me now but they have their limitations. It has taken a lot of trial and error to what will actually help give me as much independence as practical.

I continue to live with:

• serious vision impairment,
• balance and coordination difficulties,
• fatigue,
• memory problems, for example today to write this letter I couldn’t remember how old I was.
• sensory overload in busy or noisy environments,
• reduced independence,
• and emotional impacts connected to the sudden change in my life including feelings guilt and of being a burden on my almost retired parents. Worry about all the

Submission 2287

responsibility they have taken on to help me that would be impossible to do by myself right now.

These impacts affect many parts of my daily life, including safety, mobility, confidence, communication and my ability to manage tasks independently.

Early on after my stroke, I experienced depression, anxiety and even embarrassment about being out in public while adjusting to disability. At one stage I was using a wheelchair and struggled emotionally with how different my life had become.

Before my stroke, I was independent and active. I loved sports like snowboarding and was keen to go to Japan again. Afterwards, my future felt very uncertain. What even can I still do now?

The Importance of Support Workers and Community Participation

The NDIS has played an important role in helping me rebuild confidence, independence and connection with the community.

My support workers have assisted in supporting my family to ensure that I can attend appointments, continue my rehabilitation and relearn important daily living skills following my stroke. They have also provided important respite support for ongoing care that I require. Mum tries to book support workers closer to my age to take me out as there was so much life I was missing out on, while my friends from school got busier and busier, with careers and kids. Many activities or services for my kind of requirements are quite infantilising, yet I am in my mid 30’s. There could be more creativity in this space for sure.

One activity I have been working on for a long time is getting back on my bike. With a lot of practice; and someone riding with me to help me see I have been able to do my first (slow) trail ride. It was such a big achievement.

One of the most important parts of my supports has been community access. Thanks to the NDIS, support workers have helped me get back out into the community, participate in activities, spend time in nature and gradually rebuild confidence in the real world.

These experiences have had a major positive impact on my mental health and reduced the social isolation I experienced.

In the first few years after leaving hospital, I often felt ashamed and anxious being out in public because I was not used to relying on mobility supports or needing assistance. At one stage I was using a wheelchair and struggled emotionally with how different my life had become. Having patient and trusted support workers helped me slowly regain confidence and feel more comfortable participating in society again. My vision impairment and memory issue also means that safe and reliable support is extremely important when accessing appointments, community activities and everyday tasks.

I recognise that I am one of the lucky ones. I have had parents, family and friends who love, support and helped me. I recently got engaged to a beautiful woman and hope to one day have meaningful employment. I am happy and have accepted this challenge life has thrown at me. I often think about where I may have ended up without that support network. I genuinely worry that without family support and rehabilitation opportunities, many younger people with disabilities or acquired injuries could be placed into aged care environments without the hope, rehabilitation and encouragement needed to rebuild their lives.

Submission 2287

what I understand the cost to the community of me being in that type of care would be far higher than the financial support I received through the NDIS as a participant. These supports are not luxuries. They are an important part of recovery, mental health and maintaining independence.

Physiotherapy and Exercise Supports

Physiotherapy and exercise-based supports have also made significant improvements in my recovery.

These supports have helped: - improve my mobility, - increase confidence, - improve physical strength and coordination, - reduce decline, - and support my long-term rehabilitation.

Without these supports, I believe my physical health, independence and mental wellbeing gains I have achieved would decline over time. I started working out to help my vascular system repair and now I look forward to it as a really important part of mental health. It’s been very important to my wellbeing as well as mobility.

I hope exercise physiology and rehabilitation supports continue to be recognised as essential long-term supports for people recovering from acquired disabilities such as stroke.

Transport Costs

Transport costs have had a major impact on my NDIS funding.

For many participants, transport is not optional. Safe and reliable transport is necessary in order to attend appointments, therapies, rehabilitation and community activities.

I believe there needs to be greater attention given to affordable and sustainable transport solutions so participants can continue accessing supports without transport costs consuming large portions of their plans.

I would invite innovation in this space or affordable options for me to get to the gym or other safe spaces to gain more independence whilst still making sure I get there and back safely.

Concerns About Reassessments and the Proposed Reforms

One of my concerns about the proposed reforms is the stress and uncertainty created around reassessments and proving ongoing disability.

Over the last five years, there have been so many reassessments, medical reports and reviews I have lost count. While my rehabilitation has helped me improve in some areas, I still live with a permanent disability and ongoing support needs that will not disappear.

I worry that reforms focused heavily on reducing participant numbers or funding may overlook the reality that many participants are living with lifelong conditions that continue to require support even when improvements are made.

It scary to think about people living with a disability could lose all the supports they use, sometimes to just be able to get out of bed and get dressed, or go do their job, or manage their condition so they can keep themselves healthy and out of the health care system.

Participants might have partners carrying a heavy load, be parents taking care of their children, be aging parents getting up through the night to attend to their grown child’s high

Submission 2287

care needs duties and their ability to work and wellbeing contributes to their community too. Maybe there have been participants incorrectly accepted into the scheme but I can assure you there is probably a ton of paperwork, forms, meeting, calls, specialist assessments, test results that I have already submitted on file. Surely reviewing specific isolated cases of fraud or misuse is more efficient would save heaps of money for the NDIS. Especially support for people that have disabilities that affect their cognition. Maybe the ones that don’t have family need a NDIS community care person to ensure they are not ripped off.

I can see that there could be providers could bill excessive or fraudulent charges, this seems like loop holes and unclear regulation that isn’t really to do with me. All of my providers have been fully registered and qualified and charged the NDIS rates to my knowledge. These rates should be the same as in private practice and a fair exchange. There are many that charge extra to vulnerable people or don’t do what they are hired to do. I believe the growth of the NDIS may partly reflect a greater level of genuine unmet need in the community than was originally expected. I think you would find many participants and their families are already struggling financially with many living below the poverty line, relying on Government income support or insurance payments, struggling with cost of living, affordable housing, cost of medical treatments not covered by their NDIS plans and many other highly stressful issues demanding their urgent attention frequently.

In my experience, stable and trusted support workers are incredibly important for recovery, confidence and long-term wellbeing. Constant staff changes can be stressful for participants, especially for people living with cognitive, neurological or psychosocial impacts. I believe there may be opportunities for the NDIS to support more stable and ongoing employment arrangements between participants and support workers, while still protecting participant choice and control. Greater employment protections, training opportunities and workforce stability could benefit both participants and workers. Creating a more secure and sustainable workforce may also improve quality of care, reduce turnover and create long- term cost savings for the NDIS by improving consistency and participant outcomes. Communication and Participant Wellbeing I would also encourage the government to provide clearer and easier-to-understand information about reforms and changes to the NDIS. Many participants already live with cognitive difficulties, mental health challenges or fatigue that make complex systems difficult to navigate. Clear communication and reassurance are extremely important.

It would be great to see some creativity in this space to what kind of community participation activities can be developed that are respectful to people’s needs and are not infantilising. Big groups, too much noise or difficulty with my vision and memory do make doing certain activities harder for me. I like to interact with people and do things that other guys in their 30’s like to do. I’ve recently got a pan drum (purchased by me, not my funding). I know it’s good for helping me to rebuilt the circuits in my brain for my gross and fine motor skills and it’s really fun too. I would not have taken this step without my support workers encouragement to try new things to see what worked for me. I also do a wood working group to try and bring back some of my old cabinetry skills. Dad still has my DJ

Submission 2287

decks set up in the garage with the hope one day I can get back into it. Too many buttons to remember at the moment. Participants need confidence that they will continue to be treated with dignity, fairness and compassion throughout this reform process.

I don’t handle the bills I have people help me with that but I can see that this is an area where some participants probably do need help with budgeting their plan and fighting unfair charges. This shouldn’t be an arbitrary thing, but a service the NDIS can provide to people whose plan is not working for them or need help talking with a provider about their billing concerns. Like a community care service. Dealing with income support for someone that needs an advocate is a whole a massive task that many people with a disability struggle with, but that’s a matter for a different letter.

Gratitude for the Support Received

I would also like to express my gratitude for the support I have received through the NDIS and the Australian healthcare system.

I am very aware that not every country has systems that continue supporting people once they leave hospital. The NDIS has helped me continue my rehabilitation, rebuild independence and reconnect with the community in ways that would not have been possible otherwise.

I believe in neuroplasticity and I am excited and proud of my progress and so far. I am creating new neuro pathways around the damage to my brain every day. I have a positive outlook on my future whilst acknowledging that there are still challenges ahead.

I am genuinely grateful for the supports I have received so far and hope future reforms continue protecting people living with disability while strengthening the long-term sustainability of the system.

Recommendations

I respectfully ask the Committee to consider the following recommendations:

• Protect ongoing rehabilitation supports such as physiotherapy and exercise programs for participants with acquired disabilities.
• Recognise the importance of community participation supports in improving mental health, confidence and reducing social isolation.
• Improve transport systems and ensure transport costs do not disproportionately reduce participant supports.
• Prioritise fraud prevention, provider regulation and administrative efficiency before reducing participant supports.
• Recognise that participants may improve in some areas while still living with permanent disabilities and ongoing support needs.
• Explore reforms that improve workforce stability, continuity of care and employment protections for disability support workers while maintaining participant choice and flexibility.

Improve communication so reforms are accessible and easier for participants to understand. Accessibility and assistance to ensure the people that are really impacted by these reforms and know what needs to change that their voices are heard. Ensure reforms prioritise participant dignity, wellbeing and long-term independence.

Submission 2287

Thank you for considering my submission and for the opportunity to contribute lived experience to this important discussion.

Kind regards,