Submission 3454 — Name Withheld — NDIS Future Generations Bill

Personal Submission to the Senate

Community Affairs Legislation

Committee Inquiry into the National

Disability Insurance Scheme Amendment

(Securing the NDIS for Future

Generations) Bill 2026

I make this submission as the mother and primary carer of , a 21-year-old young man living with Angelman syndrome and multiple complex medical issues. I am also a clinical nurse working in the rare disease space and see firsthand the impact that NDIS decisions have on carers and their families. I ask the Committee to consider how the proposed changes in the Bill may affect people with profound and lifelong disability, and the families who provide extraordinary care every day. I support efforts to make the NDIS sustainable, but sustainability must not come at the expense of safety, dignity, human rights, and the original purpose of the Scheme. I consent to this submission being published with my name withheld if requested.

1. Introduction and ’s circumstances is a 21-year-old young man who lives with Angelman syndrome and other complex medical issues including chronic constipation, arthritis, poorly controlled seizures, and a very high level of dependence on others for all aspects of daily living. He needs support with eating, medication, continence aids, toileting, dressing, sleep hygiene, safety, mobility, and communication. His daily life also relies on extensive equipment and environmental supports, including hoists, an enclosed bed, a power wheelchair, a manual wheelchair, a wheelie walker, a shower chair, ramps, gates, alarms, shower and toilet rails, specialised shoes to enable him to walk, a wheelchair-accessible van, a feeding chair, and thickened fluids. He is a beautiful, happy young man who brightens the world with his presence, shows determination to live life as fully as possible, and is deeply loved by his family and friends. Even strangers have commented that his smile brightens their day and that his effort to keep walking despite his difficulties is inspiring.

There is, however, a very significant cost to our family’s life. ’s disability placed such extreme demands on our family that I separated from my former husband, who was unable to cope, left the children’s lives 19 years ago, and evaded paying child support, of which more than $70,000 remains outstanding. ’s sisters and step-sisters missed out on ordinary time and experiences because our world revolved around medical appointments, therapies, illness, and trying to survive financially. I had to reduce my work, sell my family home, and relocate

to to be near my parents for support, where I retrained as a nurse. My mother has since passed away, and I now also care for my elderly father on the same property, adding to our family’s already heavy load. I work shift work across emergency paediatrics and a rare disease clinic, while my husband has reduced his own employment over the years to help support . These sacrifices have left us financially vulnerable, with little superannuation, especially after we had to draw on our super to purchase a wheelchair-accessible vehicle at a cost far above that of an ordinary car. As became older, this was the only way we could transport him safely because his mobility is extremely poor. This week my husband starts full-time employment after many years of carrying the load, and we are concerned about how the proposed changes will affect us.

2. Core message: people with Angelman syndrome are the original intent of the NDIS

People who live with Angelman syndrome represent the original intent of the NDIS: people with permanent, significant, and complex disability who require lifelong, individualised disability support. Angelman syndrome is associated with severe intellectual disability, little or no speech, seizures, mobility and balance difficulties, sleep disturbance, behavioural complexity, and lifelong support needs. It is not a temporary condition and does not resolve through ordinary parenting, short-term intervention, or standardised service models. Adults with the condition often require lifelong care, including communication support and management of seizures, sleep, gastrointestinal issues, bone health, and mobility.

3. Protection for people with profound disability I support explicit protection for a cohort of participants who require 24/7 high-intensity support. Blanket funding cuts, standardised staffing ratios, or rigid assumptions about what families should absorb cannot safely apply to people with profound intellectual disability, severe communication disability, epilepsy, mobility impairment, and complex behaviour support needs. In ’s case, supervision is always required. He is on thickened fluids due to multiple aspiration pneumonias in earlier years, has seizures, and lacks awareness of risks such as traffic, drowning, or over-eating. We have gated doors because he will eat through packets and does not know when to stop. He is attracted to water and will turn on hot taps or attempt to get in the shower or bath. He requires trained staff who understand his communication, medical needs, and safety risks. Without these supports, the result is not efficiency; it is increased risk of injury, abuse, crisis, hospitalisation, and institutionalisation.

4. Parental responsibility is not a substitute for disability support

The language of “parental responsibility” is often used in a way that erases the reality of profound disability. Ordinary parenting does not involve changing continence aids at age

five, ten, and into adulthood while feeding, dressing, lifting, supervising, and managing seizures, aspiration risk, toileting, sleep disruption, chronic constipation, and behaviours of frustration. Ordinary parenting does not involve administering enemas every second day because a young person cannot manage this for themselves. Nor does it require stopping an older child from running into the road or drowning because they have no understanding of danger and cannot communicate their needs reliably.

The cumulative sleep deprivation over more than two decades has been dangerous. The paperwork, appointments, applications, reassessments, and constant advocacy create an excessive and exhausting cognitive load. These are disability-related care needs and must be recognised as such. If proposed provisions expand the idea of parental responsibility too far, they will make extraordinary care invisible and deny families essential supports. In my experience as a clinical nurse in the rare disease space, I also see the impact on families with younger children when sleep deprivation, PEG feeds, therapies, medical appointments, and complex daily care are dismissed as “parental responsibility”. None of this is ordinary parenting. It has significant impacts on the whole family unit, especially where there is more than one child, other siblings with disability, limited formal supports, or single-parent families.

5. Young people, community participation, and workforce impacts

For teenagers and young adults with profound disability, social and community participation supports are often the only way they can safely leave the house, engage with others, and enjoy a meaningful life. ’s enjoyment comes from accessing the community. He is trapped in his body without words, but his smile tells the story. It is imperative that he is not left to sit at home every day because supports are reduced or recast as something families should simply absorb. If supports for community participation are cut while parental responsibility expectations increase, parents—especially mothers—will be pushed further out of the workforce and deeper into financial and emotional strain. I have already shaped my entire life around ’s care, including reducing work, relocating, retraining, and sacrificing savings and superannuation. These impacts are not theoretical; they are lived reality. Our entire family has made sacrifices far beyond those of the average family. While we have tried to ensure his siblings do not miss out, there have been many times when they have had to adapt and go without. His sisters, and even my granddaughters whom I cared for over seven years, have all had to help and grow up far too early. They have learned from a young age to identify seizures, ensure the house is secure, help feed and change him, and prevent unsafe situations. They have had their hair pulled and been knocked over. now weighs 73 kilograms and is heavier than everyone in the household except my husband. Combined with his physical needs, this can create dangerous situations. ’s cognitive impairment is severe, and he is therefore unable to work in any capacity, even with support or in supported programs.

6. Adults, ageing families, SDA and SIL As families age, disability supports such as SDA and SIL become essential for safety, continuity, and dignity. My husband and I have made the very difficult decision to transition into SDA and SIL because we are ageing, exhausted, and trying to generate even a small degree of financial security after years of sacrifice. We have supported for many years, including the last seven with the help of the NDIS, and now feel we are finally at a point where planning for his adulthood is possible. That should not be undermined by funding cuts, reduced staffing ratios, or block-funded models that remove choice and accountability. Supports for adults with Angelman syndrome are not optional extras; they are what allow ageing parents to remain healthy and what allow disabled adults to live safely and meaningfully. They also create jobs for Australians.

SIL arrangements depend on staffing ratios that reflect actual need. has always required one-to-one care. We recently tried a day program with one staff member to two participants, but we removed him when his Positive Behaviour Support Provider identified that, to stop him wandering, he was being kept strapped in his wheelchair for most of the day because the provider could not safely manage him at that ratio. This broke my heart. It also demonstrated that standardised ratios can quickly become restrictive, unsafe, and undignified. has also had poorly trained support workers slap him in the past. These experiences show why high quality, properly trained, accountable supports are essential, and why any move toward generic or block-funded approaches is dangerous for people with severe communication and behaviour support needs.

Our family has also experienced the consequences of inadequate respite staffing. On one occasion, was in a respite setting overnight where there was only one support worker for several clients. was not mobile at that time and was placed in a room with a 12-year-old boy. Earlier in the night, that same boy had reportedly attacked another person and was moved, yet remained vulnerable. He was then attacked twice overnight and sustained bite marks and scratches to his face and eye, requiring antibiotics. When first cried out, the worker checked but assumed he had somehow injured himself and found the other child “sleeping”. It was only later, when the bite marks were clearly visible, that the seriousness of what had happened became obvious. could not explain what had happened because he could not communicate it, and he could not protect himself because he was not mobile. This experience left us traumatised as a family and without respite for years because we could no longer trust that he would be safe. It reinforced for us that, if enters respite, he must have one-to-one support and properly trained staff. Without the right supports, people like are at real risk of abuse, and the consequences for families are profound and long-lasting.

7. Allied health, behaviour support, and communication safeguards

Speech therapy, occupational therapy, physiotherapy, and behaviour support are not optional for people with Angelman syndrome. These supports maintain function, prevent decline,

reduce behavioural risk, support mobility, and protect safety. Clinical guidance on Angelman syndrome highlights the need for multidisciplinary care, including seizure management, physiotherapy, occupational therapy, and support for communication and overall standards of care. has limited communication, requires a Positive Behaviour Support Plan, and I am his guardian for restrictive practices. His workers need intensive training to understand how to care for him safely and how to interpret his needs. Sometimes he bites when frustrated; this is communication in the context of profound disability, not wrongdoing. Cuts to allied health and behaviour support would reduce his communication, increase risk, undermine his independence and dignity, and increase behaviours of concern. With the right support, we are seeing improvements in communication, but progress is not linear. Many factors affect outcomes for families, including seizure control, hospitalisations, work commitments, staff training, the participant’s growth, access to technology, and the experience of allied health clinicians in communication and severe neurological impairment. Allied health services often have rapid staff turnover, forcing families to start all over again and causing frustration and delay. Too often, the burden is placed on the participant to prove capability within a limited timeframe, when in reality meaningful gains may take years. Those gains are still worthwhile, yet participants can be denied support simply because progress is slower than the system expects.

People with Angelman syndrome often have severe speech impairment or no speech and require augmentative and alternative communication and trained communication partners. Australian rare disease guidance notes that adults with Angelman syndrome may have severe intellectual disability and speech impairment and may require AAC tools, while families often need support with behaviour, sleep, gastrointestinal issues, mobility, and lifelong care. This means extra safeguards are needed before any funding or policy changes are made. When a person cannot easily report mistreatment, explain distress, or advocate for themselves, communication support becomes central to safety, behaviour management, and human dignity.

8. Oversight, review rights, and practical recommendations

I support independent review rights for all plan changes and meaningful parliamentary oversight before significant new rules take effect. The Senate inquiry page states that submissions should directly address the provisions of the Bill, and the Bill is presented as clarifying eligibility and supports, addressing fraud, and updating governance and administration. The Senate Community Affairs Legislation Committee inquiry is considering this Bill, and the Department of Health, Disability and Ageing describes the reforms as measures to protect the NDIS and place it on a sustainable footing. I ask the Committee to recommend that the Bill or associated rules explicitly protect participants with profound and lifelong disability, preserve merits review and appeal rights, require co-design with disability communities, and ensure that reforms aimed at sustainability do not shift unacceptable risk onto participants and families.

The ability to apply for a change in circumstances must also remain. Life does not stay static for people with profound disability or for their families. Needs can change significantly at key transition points, such as moving from school to adulthood, or when there is a major change in the family, including cancer, death, illness, divorce, ageing, increased equipment needs, or the loss of informal supports. Care needs can also increase for many other reasons over time. The Scheme must protect the ability of participants and families to seek additional or different supports when a real and documented need is identified. Without that flexibility, people with severe disability may be left unsafe, families may be pushed beyond breaking point, and the NDIS will fail to respond to the realities of lifelong care.

A further area requiring reform is the cost and burden of repeated reports for participants whose disability is already well established as profound, permanent, and lifelong. ’s condition is caused by a chromosome deletion that results in severe and enduring functional impairment. He will not “improve” to the point of independence, and it is highly unlikely that any cure will change that reality within his lifetime. Requiring families to obtain expensive reports year after year, often at a cost of thousands of dollars, simply to restate that a person remains severely impaired and unable to care for themselves is a monumental waste of money. That money would be better spent on direct care and essential supports. The same is true of the cost to families and the Scheme when participants must fight through review processes or tribunals to secure obviously necessary supports. I acknowledge that updated evidence may be appropriate at certain transition points or where needs genuinely change, but it should not be required routinely every year for people with clearly lifelong impairment.

This cohort should also not be reduced to words on paper that can never fully capture an individual’s abilities, vulnerabilities, and support needs. For people with profound disability, context matters. Planners and decision-makers should meet participants and their families, gather information firsthand, and understand the realities of daily life before making decisions that affect safety, dignity, and participation. We believe one reason currently has more adequate supports is that, in the early years before COVID, decision-makers could see for themselves how profoundly disabled he was and how much support was required. That direct understanding matters. It is part of treating people with dignity rather than reducing them to a file, a form, or a report that can never tell the full story.

By way of example of unnecessary stress and burdens placed on families, I was told six years ago that bathroom modifications for would not be approved because I had not sought permission before buying our house and should have obtained an occupational therapy assessment first. This was unrealistic and disconnected from real life. We inspected more than 50 houses to find a suitable property, and it took six months to find an occupational therapist in our area. The only reason the modification was eventually approved after a complaint was lodged was because I located an email chain from my Local Area Coordinator advising me to buy the house and then apply for modifications. The bathroom design has since been critical to ’s safety and the safety of staff, particularly because he has had multiple seizures in the bathroom. This example illustrates how rigid processes can create unnecessary stress and risk for families who are already carrying extraordinary responsibilities.

9. Conclusion I have been a mother and carer for 33 years and have not had proper sleep in 22 years because of ’s sleep issues and care needs. I am tired and exhausted, but I continue because I love my son and because he deserves a safe, dignified, meaningful life. and his friends in the rare disease cohort are exactly the people the NDIS was designed for. It is deeply concerning that so much money can be spent on reassessments, disputes, and processes while people with the most severe disabilities are repeatedly forced to justify supports that are obviously essential. I understand that wastage and fraud must be addressed, but reforms must protect the most vulnerable, severely disabled participants rather than expose them to greater harm.

I respectfully ask the Committee to recommend that people with profound and lifelong disability, including people living with Angelman syndrome, be recognised as a protected cohort; that disability-related care not be reclassified as ordinary parental responsibility; that community participation, high-intensity daily living supports, allied health, and behaviour support be preserved where they are necessary for safety and dignity; that SIL and SDA arrangements remain responsive to individual staffing needs; that communication disability be treated as a safeguarding issue; and that all significant plan changes remain subject to independent review and proper parliamentary oversight.

I understand that the Scheme must be sustainable and that some participants may need to be reviewed and supports streamlined. However, where participants have well-established and lifelong support needs, supported by peer-reviewed medical evidence, this cohort must remain protected. We are not the problem. The stress created by the proposed changes risks placing our loved ones at significant risk of harm or death due to inadequate supports and carer burnout.

and others like him, are not an example of NDIS excess; they are the reason the Scheme exists. I ask the Committee to ensure that reforms aimed at sustainability do not come at the expense of those with the most profound and lifelong disabilities. Protecting this cohort is not only sound policy, it is a matter of safety, dignity, human rights, and basic fairness. The NDIS must remain responsive to real need, grounded in evidence, and capable of supporting families who have already carried extraordinary burdens for decades. Please ensure that people like are not made to bear the cost of fixing problems they did not create. Thank you for considering this submission.