Submission 2728
To whom it may concern,
I am writing as the sister, legal guardian and NDIS plan nominee for my sister, who is 61 years old and lives with cerebral palsy. My sister requires 24/7 support and has been involved with the NDIS since 2020.
My role includes making decisions in relation to her supports, advocating for her needs, coordinating services, attending appointments and ensuring she is able to live a safe and meaningful life. Navigating the NDIS system has often been difficult and stressful, particularly when it comes to obtaining assessments and reports that appear to be ignored or given little weight in decision-making.
I appreciate the opportunity to provide feedback on the proposed changes to the NDIS.
Importance of Social and Community Participation
I am very concerned about any reduction in funding for social and community participation supports. These supports are not “extras.” They are essential to my sister’s wellbeing, independence and dignity. They allow her to participate in the community, maintain friendships and relationships, spend time with family and enjoy a quality of life many people take for granted. Before modern disability supports were available, many people with disability were isolated and excluded from normal community life. My sister has lived away from family since she was 10 years old because there were limited supports available at that time. Today, she lives in a supported independent living arrangement with three other residents and enjoys a stable and fulfilling life. Without appropriate supports, I fear her life would return to the “bad old days” of isolation, boredom and lack of opportunity. Reduced supports would negatively impact her mental wellbeing, behaviours, happiness and connection with family and community.
Choice and Control
I am also concerned about proposed changes to “reasonable and necessary” supports if these changes reduce participant choice and control. My sister’s current NDIS plan is working well. She has support through SIL, community access, therapies and other supports that meet her needs. While no system is perfect, these supports allow her to live safely and with dignity. It is important that decisions continue to involve the participant, their family, guardians and the professionals who know them well. Families and long-term carers understand the participant’s needs in ways that cannot always be captured in a short assessment or administrative process.
Expectations on Families and Unpaid Carers
I am deeply concerned about increasing expectations on families and unpaid carers. Our mother is now 88 years old and is no longer physically able to provide care. Her siblings also have their own families, responsibilities and health needs. While we
Submission 2728
continue to support her emotionally and advocate for her, we cannot replace trained paid supports. Families should not be expected to fill gaps caused by reduced funding or unavailable services. Doing so creates stress, burnout and unsafe situations for both participants and families.
Delays and Access to Equipment The delays involved in obtaining assistive technology and equipment are unacceptable and place unnecessary stress on participants and families. For example, the process of obtaining a new wheelchair for my sister began in 2023 with trials and assessments. Quotes were finally received in 2025 and funding was approved in 2026. There are still further delays for modifications, meaning the overall process will take approximately three years. We also needed a larger hospital bed for my sister. Rather than waiting years for approval, our family paid for the bed ourselves because the need was immediate. People with lifelong disabilities should not have to wait years for essential equipment that directly impacts their comfort, safety and daily living.
Allied Health Reports and Assessments
One of the most frustrating aspects of the NDIS process is the amount of time, effort and money spent obtaining reports and assessments, only for families to feel they are ignored. We regularly gather allied health reports and assessments to support applications and reviews. However, there is often little transparency about how these reports are considered in decisions. This creates frustration, hopelessness and a loss of confidence in the system. If families and professionals are asked to provide evidence, that evidence should be properly reviewed and respected.
Reassessments and Lifelong Disability
I believe there needs to be greater recognition of lifelong disabilities such as cerebral palsy. Frequent reassessments and stressful review processes can create unnecessary anxiety for participants and families, particularly when the disability is permanent and lifelong. My sister’s needs are not going to disappear. The focus should be on maintaining quality of life, safety, health and participation rather than repeatedly proving disability and support needs.
Recommendations
I respectfully ask the Committee to consider the following recommendations: Protect funding for social and community participation supports. Ensure participant choice and control remain central to the NDIS. Properly consider allied health reports and assessments during decision-making. Reduce delays for assistive technology and essential equipment. Include stronger safeguards before supports can be reduced or removed.
Submission 2728
Improve communication, transparency and accountability within the NDIS. Reduce the stress and burden of reassessments for people with permanent disabilities. Ensure families and unpaid carers are not expected to replace funded supports. Recognise the lifelong nature of conditions such as cerebral palsy. Ensure decisions involve people who know the participant well, including guardians, carers and allied health professionals.
Conclusion
My sister does not ask for luxury or special treatment. She simply wants to live a safe, stable and meaningful life with the right supports in place. The NDIS has made it possible for her to live independently from family, participate in her community, maintain relationships and experience dignity and routine in her daily life. I ask the Committee to carefully consider how these proposed changes may affect people with lifelong disabilities and the families who support them. Supports that may appear simple on paper have a very real impact on safety, mental wellbeing, independence and quality of life. Thank you for considering my submission