National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1035
Submission in response to Senate Inquiry on the proposed NDIS legislation Changes
To whom it may concern,
My name is , I live in Melbourne with my husband and three children, one of whom ( (8)) lives with Angelman Syndrome (AS). My husband and I both work full- time including mandated in-office days.
’s current NDIS annual plan is funded at approximately $125k per year. This funding supports her daily living needs, supervised community access (approximately 16 hours per week), continence consumables, low-level assistive technology, weekly therapies (occupational therapy, physiotherapy, speech), behaviour support, and assistive technology maintenance. These supports are not discretionary. They are essential to maintaining ’s safety, function, and quality of life, and they are what allow us to continue caring for her at home while remaining in employment.
lives with Angelman Syndrome (AS), a rare genetic neurological condition resulting in permanent, global functional impairment across communication, learning, mobility, and self-care. Her presentation is further compounded by epilepsy, severe intellectual disability, and co-occurring conditions including asthma, allergies, sensory processing disorder, eczema, and Glucose‑6‑phosphate dehydrogenase (G6PD) deficiency. She also has ongoing medical needs including frequent ear infections requiring grommets, recurrent nosebleeds requiring cauterisation, enlarged adenoids and tonsils (awaiting surgical removal), and moderate strabismus affecting vision, alongside an elevated risk of scoliosis requiring monitoring.
AS is a rare genetic neurological condition that causes permanent and profound impairment across all areas of functioning, including communication, cognition, mobility, and self-care. She is non-verbal, has severe intellectual disability (DSMR-5), and requires constant 1:1 supervision to remain safe. Her condition is further complicated by epilepsy requiring ongoing monitoring, significant sleep disturbance requiring active overnight supervision, ataxia leading to increased fall risk, and behaviours of concern arising from her inability to communicate. She also has complex medical needs, including asthma, allergies, G6PD deficiency, bowel care needs, and ongoing ENT and surgical concerns. Her care needs are constant, highly skilled, and extend far beyond what would reasonably be expected of typical parenting.
It is important to clarify what is considered reasonable parental responsibility for a child under 18. Parental responsibility generally includes providing supervision appropriate to the child’s age, meeting basic daily needs such as feeding, clothing, and attending school, and supporting typical development and wellbeing. In contrast, requires continuous, high‑intensity disability care that goes far beyond this. This includes 24/7 active supervision for safety, management of epilepsy and medical risks, specialised behaviour support, complex bowel care, non-verbal communication support, and coordination of multiple therapies and medical interventions. requires care and support for all aspects of her life from dressing, hygiene, feeding, drinking and mobility. This level of care is not typical parenting; it is the equivalent of full-time disability and healthcare provision within the home.
Our daily life reflects this reality. Nights are frequently interrupted, with one of us awake for several hours supervising . Each day begins already exhausted and requires
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1035
complete hands-on support for every aspect of her care, while we simultaneously manage the needs of our two younger children and maintain full-time work commitments without access to informal supports due as our own parents are aged and suffer from chronic health conditions such as glaucoma, osteoporosis and hypertension. The carer burden has is already evident with both my husband and I suffering from back injuries, hypertension requiring medication which will have serious consequences due to our familial history of heart disease, strokes etc. cannot safely participate in any environment without direct supervision, meaning there are no simple routines, everything requires planning, coordination, and often more than one adult. Evenings and weekends are not rest periods but a continuation of care, therapies, and medical management. The physical, emotional, and mental toll is significant, and our ability to sustain this is entirely dependent on the supports currently in place.
In this context, the proposed NDIS legislative changes present serious concerns. The introduction of provisions allowing the Minister to make unilateral decisions regarding funding, including the ability to impose caps or percentage reductions across categories of supports or groups of participants, represents a fundamental shift away from individualised, needs-based care. These changes create a risk that funding decisions will be made at a system level, rather than being based on the specific and evidence-based needs of individuals like .
The potential for funding caps to be applied across participant groups is particularly concerning. AS is a spectrum condition, with significant variability in severity, medical complexity, behaviour, mobility, and supervision needs. There is no “average” presentation that can be safely used to determine funding. Standardised caps or cohort-based funding models risk underestimating the needs of children like , whose care requirements are at the higher end of the spectrum. Any approach that relies on averaging or standardisation will inevitably disadvantage those with the most complex needs.
The broader shift toward funding supports based on scheme sustainability rather than actual need also presents significant risk. If funding is reduced or capped below what is required, the impact on will be immediate. Loss of therapy will result in regression in communication, mobility, and functional skills. Reduction in core supports will increase her risk of injury, unmanaged seizures, choking incidents, and behavioural escalation. It will also significantly limit her ability to access the community in a safe and supported way. Without adequate support worker hours, cannot safely participate in everyday activities such as attending the park, being involved in community programs, or engaging socially with others, as she requires constant 1:1 supervision and active support in all environments. This would lead to increased social isolation, reduced opportunities to build relationships and communication skills, and a diminished quality of life. Without adequate behaviour support, there is a greater likelihood of unsafe behaviours, increased distress, and reliance on reactive or restrictive practices rather than proactive, evidence-based approaches.
These risks do not disappear if funding is reduced, they are amplified, increasing the level of risk and pressure on families who are already managing complex and ongoing care demands. Without adequate supports, the burden of care increases beyond what is sustainable, directly impacting our ability to remain in stable employment, support our other children, and maintain our own physical and mental health. Over time, this also creates a widening gap in financial security for families like ours. Many primary carers are women who
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1035
reduce hours, step back from career progression, or leave the workforce entirely due to caring responsibilities. This has a cumulative impact on lifetime earnings, superannuation, and the ability to secure a financially viable retirement. For families already carrying the long- term responsibility of caring for a child with lifelong disability, this compounds both the immediate and future risk, extending well beyond the present care environment.
Without appropriate supports, this pathway leads not only to increased risk of burnout and crisis, but also to greater long-term reliance on higher-cost systems such as hospitalisation or out-of-home care. For families like mine, NDIS supports are not about convenience; they are essential to maintaining safety, dignity, and the sustainability of care within the home.
The proposed changes, particularly those enabling unilateral funding decisions and the application of caps across participant groups, risk disconnecting funding from actual need, especially for children with rare and complex disabilities. In conditions such as Angelman Syndrome, where needs vary significantly across a spectrum, these approaches fail to account for those with the highest levels of care and supervision requirements.
’s needs will not reduce if supports are capped or cut, what will change is our ability to safely and sustainably meet them. The current system allows us to provide stable, consistent care while continuing to participate in the workforce and contribute to the broader community. Any move away from individualised, adequately funded support places not only at risk, but also undermines the long-term financial and social sustainability of families like ours.
Given these significant concerns, I respectfully urge the Ministers and all Senators to reconsider the proposed legislative changes and to commit to a thorough review of the draft bill. It is essential that there be a longer, transparent consultation period involving families directly impacted by these measures, as well as Disability Representative Organisations (DROs), to ensure that any reforms truly reflect the needs of those most affected and uphold the principles of individualised, needs-based support.