Submission Regarding Proposed Amendments to the National Disability Insurance Scheme Act 2013

To Whom It May Concern

I am writing as a participant of the National Disability Insurance Scheme (NDIS), a father and one of the primary carers for my two adult sons who have profound disabilities. I live in regional South Australia and want to share my lived experience in the hope that Parliament will understand the real human impact of these proposed amendments.

I live with an acquired brain injury. Some days I function for parts of the day; other days, even the simplest tasks can feel impossible. My condition fluctuates constantly and the challenges I face are not only medical, they are emotional, cognitive, social and physical. The impact of my disability cannot be measured by a narrow definition of “functional capacity” alone.

My wife and I are full-time carers for our two sons, aged 24 and 21. We spend most of every day teaching, modelling, liaising with therapists and support workers, planning, supporting, avocating, caring for our sons and managing all the daily responsibilities of running a household. From the moment they wake until they finally fall asleep, often around midnight, our lives revolve around trying to keep them safe, regulated, healthy, included and connected to the world around them. Even after they go to sleep, we often lie awake wondering whether they will remain asleep, whether a seizure may occur, whether anxiety or distress will escalate, or whether they may get up and do something unsafe while we are asleep.

There is no real “switching off” from caring. Every day involves managing appointments, medication, behavioural support, emotional regulation, routines, risk management, advocacy, transport, communication barriers and future planning for two vulnerable adults who rely on us for almost every aspect of daily life. At present, we are working with our Support Coordinator on a plan review process that has been extremely stressful and emotionally draining for my wife and our family, though that is a conversation for another day.

My two adult sons both have profound Autism-Spectrum-Disorder, intellectual disability and severe communication impairments. They are non-speaking, with severe language disorder and require substantial daily support for communication, emotional regulation, safety, social participation, daily living and personal care.

Both of our sons live with severe anxiety and one of our sons has a significant obsessive- compulsive disorder (OCD) while our other son has significant OCD tendencies. One of our sons also lives with severe epilepsy, anaphylaxis, hydrocephalus, severe flat feet affecting mobility, and chronic fatigue resulting from both his disability and medication side effects. Because of his disabilities, he cannot independently recognise, manage or respond to many of these health issues. A holistic approach is therefore essential rather than focusing only on individual diagnoses. These disabilities do not exist separately from one another. They overlap and compound each other every day. Our lives cannot be reduced to isolated diagnoses or assessed through simplistic measures that fail to recognise the full reality of complex disability.

Despite their challenges, community participation has been life-changing for our sons.

The ability to attend supported programs, volunteer activities, packaging work and community-based employment opportunities gives them something every human being deserves: purpose, dignity, belonging, routine and connection.

One of the most important supports in our lives has been Bedford Group. The supported work and community programs they provide are not “extras” or luxuries; they are essential to our sons’ wellbeing, mental health, confidence and quality of life. The efforts made by Premier Peter Malinauskas Team to help keep Bedford operating were incredibly important to families like ours because the loss of these services would have been devastating.

For our sons, being able to attend supported work is enormous. It gives them:

• social interaction
• structure and routine
• emotional wellbeing
• confidence
• sensory regulation
• community connection
• and a sense that they are contributing and valued.

These opportunities are exactly the type of supports that many families are concerned may be affected by the proposed reforms. Changes to funding criteria, community participation supports, functional capacity assessments, and interpretations of what is considered “reasonable and necessary” may unintentionally reduce access to the very activities that provide purpose, connection, routine and inclusion. For people with profound disabilities, participation in community life is not an optional extra. It is a critical component of wellbeing, mental health, skill development and quality of life.

We are deeply worried that, under the proposed changes, many services may be reduced to telehealth or remote delivery. Our sons cannot rely on these forms of support. They need face- to-face assistance, hands-on help and physical presence to safely participate, regulate behaviour, communicate and engage in activities. For many families like ours, telehealth (and alike) is not a substitute; it simply cannot meet the intensity and complexity of needs.

I am deeply concerned about defining functional capacity too narrowly or linking support needs strictly to specific impairments. Functional capacity fluctuates depending on exhaustion, anxiety, environment, access to supports, rural isolation, communication barriers, medical instability, caring pressures and cumulative impact over time. A person may appear capable at one moment but be unable to sustain that capacity safely, consistently, or independently in everyday life. My acquired brain injury cannot be separated from the exhaustion and emotional strain of caring for two profoundly disabled adult sons. Likewise, my sons’ autism cannot be separated from their anxiety, communication barriers, fatigue, medical conditions, behavioural

Concerns Regarding Redefinition of Permanence and Support

needs and social isolation. A narrow interpretation of disability risks ignoring the real-world complexity families live with every single day.

I am also concerned about the proposal to redefine permanence through the concept of “all appropriate treatment.” Many disabilities are lifelong. Treatment may assist with symptom management or stability, but it does not remove disability. Stability is not recovery. A temporary improvement does not mean disability has disappeared. Many disabilities are managed rather than cured, and must be supported across the lifetime rather than repeatedly through reassessment processes.

The proposal for more frequent reassessments and plan renewals is confusing. For families with lifelong, profound disabilities, repeated reassessments create stress and uncertainty. We already manage appointments, therapies, reports, crises and advocacy on a daily basis. Because of our sons’ complex needs, their plans have always been 12 months. A recent surprise reassessment resulted in one son receiving a 12-month plan while the other was given a 5-year plan. This inconsistency is deeply worrying, as errors (as admitted by NDIA when we put in a formal complaint) requiring us to go through a review process and, possibly, to tribunal to get them corrected. Constantly having to prove disability is emotionally exhausting and retraumatising. Families like ours need stability and continuity, not fear that essential supports will be reduced, delayed or removed.

Living in regional South Australia already creates enormous barriers: shortages of providers and therapists, long waiting lists, reduced behavioural support options, limited respite, travel barriers and increasing provider withdrawal from rural areas.

Any shift toward greater reliance on mainstream services would unfairly disadvantage regional participants. These services are often unavailable, overstretched or lack the specialised expertise required to meet complex disability needs, leaving families without the supports they rely on for safety, health and participation. Our sons’ needs will not disappear because services disappear. The burden simply falls back onto exhausted ageing parents and carers.

Many carers, including myself, cannot maintain stable employment due to the intensity of caring responsibilities. Disability care is unpredictable and relentless.

If supports are reduced or harder to access:

• carers may be forced to leave the workforce entirely
• underemployment and unemployment among carers will rise
• family breakdown and burnout will increase
• hospitalisations and crises may rise
• and participants will become more isolated

Investment in disability support is not merely expenditure. It prevents crisis, enables participation, supports families to remain in the workforce and contributes to the broader

• economy. When carers are forced to leave work because supports are not enough, it reduces workforce participation and productivity. Stronger disability supports do the opposite, they help families stay in work and strengthen both the economy and society.

One of our greatest concerns about the proposed NDIS reforms is the potential impact on respite and short-term accommodation supports for both our sons and myself. While the proposal does not specifically state that respite will be removed, the wording around tighter definitions of “reasonable and necessary” supports, new assessment processes and increased scrutiny of funding creates uncertainty about whether these vital supports will continue to be available when they are genuinely needed.

For our family, respite is not a luxury or an occasional convenience. Every time our sons need to go somewhere, or every time we as parents need to attend appointments, manage family responsibilities, or simply take a break from our caring role, support must be arranged. The people who come into our home are not family members, friends or neighbours helping out; they are paid support workers. Many families can rely on extended family or friends to provide occasional care, social connection, overnight stays or a change of environment. Our sons do not have those opportunities. There is no network of family or friends they can visit or stay with independently. The supports funded through the NDIS often provide the only alternative to relying entirely on us as parents.

I am also concerned about my own access to respite. Because of my disability, shared respite environments are not always suitable or beneficial for me. Respite should provide relief, restore wellbeing and help me maintain my health so that I can continue supporting my family. If future policies limit access to respite, restrict when it can be used or favour shared arrangements that do not meet my disability-related needs, the purpose of respite is defeated. Instead of providing support, it can increase stress, anxiety, exhaustion and the impact of my disability.

The flexibility to access respite when it is actually needed, rather than only on predetermined days or under rigid conditions, is essential. Disability, caring responsibilities, health issues and family circumstances do not occur according to a schedule. We are concerned that the proposed reforms may not adequately recognise the realities faced by families like ours, where respite is a critical support that helps prevent burnout, sustain caring relationships, maintain wellbeing and avoid crisis.

Mainstream health and community systems in regional areas are already overstretched and cannot absorb the complex needs of participants if NDIS supports are reduced or restricted. Regional and rural participants are affected by service scarcity, creating unequal access to disability supports compared with metropolitan participants. This risks indirect discrimination, where geography, not need, determines access to essential services.

Many carers cannot maintain employment due to caring responsibilities. If supports are reduced:

• carers may exit the workforce
• household income and stability will decline
• health systems will carry more crisis presentations
• participants will experience greater isolation and risk

The proposed amendments to the NDIS Act must be considered in light of Australia’s obligations under the Disability Discrimination Act 1992 and the UN Convention on the Rights of Persons with Disabilities (CRPD). People with disability have the right to live independently, participate in the community, access employment and live with dignity and safety. These rights are directly engaged by the proposed changes, particularly in relation to functional capacity definitions, reassessments, and access to supports.

I respectfully ask Parliament to ensure that:

• assessments remain holistic and not solely diagnosis-based
• fluctuating and cumulative disability is recognised
• social and emotional wellbeing are properly valued
• regional disadvantage is specifically considered
• carers and family impacts are acknowledged
• community participation and supported employment are protected
• telehealth is not treated as a universal substitute for in-person support
• staff supporting complex disability are trained, experienced and accountable
• plan stability and continuity are protected for lifelong disability
• access is based on real-world functioning, safety, dignity and sustainability

I also question what actually happens with the hundreds of submissions provided by participants, families, carers and disability organisations during consultation processes. Many of us invest significant time, effort and emotional energy to explain the real-world impacts of proposed reforms, yet there is little transparency about how these submissions are considered or whether they influence policy decisions. It is difficult to know if our voices are genuinely heard or if decisions have already been made regardless of the feedback.

The NDIS was created to support inclusion, participation, dignity and fairness. Please do not reduce people like my sons and myself to paperwork, categories, assessment scores or narrow definitions that fail to capture the reality of our lives. Behind every plan is a person. Behind many plans is an entire family doing everything they can, every single day, to hold life together.

Thank you for considering my submission.

Note Regarding Preparation of this Submission: This submission was prepared by me as a participant, parent and carer. I used AI-assisted tools to help organise my thoughts, improve clarity and identify relevant human rights considerations. All experiences, opinions and conclusions expressed in this submission are my own.