Submission 3325 — Name Withheld — NDIS Future Generations Bill | External submission

CONFIDENTIAL — Please withhold name from public record

Senate Standing Committee on Community Affairs

community.affairs.sen@aph.gov.au

Submission to the Senate Inquiry into the Support at

Home Program

Submitted by: — daughter, sole carer, and small business owner

Caring for:                             , polio survivor and Post Polio and                             , victim of violent

crime

Location: Rockingham, Western Australia Date: 4th June 2026

Introduction

I am writing as the daughter and sole carer of , who contracted polio at 18 months of age and has lived with the severe and progressive consequences of that infection every day of her life. I am also a small business owner a sole trader who is watching her business suffer the direct financial consequences of a system that refuses to provide adequate, timely support to her parents.

and her husband wish to remain in their home. That is not an extraordinary request. It is the stated purpose of the Support at Home Program. But remaining at home safely requires equipment, home modifications, transport, and adequately funded care none of which has been delivered in full or in time. And the gap between what the system provides and what actually needs is being filled entirely by me, at significant and escalating personal and financial cost.

I am asking the Committee to understand not just what the system is failing to do for but what the cumulative weight of that failure is doing to the person who is left to compensate for it.

Snapshot: ’s Current Situation

contracted polio at 18 months of age. She has experienced severe daily limitations and progressive post-polio symptoms her entire life, including significant muscle weakness, chronic fatigue, pain, and mobility impairment that has worsened with age.

• lives with her husband , who is no longer able to provide care following a

serious assault in 2016. They wish to remain in their home together.

is currently receiving a Support at Home Level 2 package, provider managed. She has been approved for Level 3, but the funding allocated is insufficient to meet her actual needs.
I have formally disputed the Level 3 funding decision through My Aged Care. The system advises outcomes within 90 days. I am still waiting. There is no interim support during this period.

has not walked without assistance since October 2025, when she underwent a hip replacement following a broken hip and compound femur fracture. She is at high and immediate risk of further falls.
does not have appropriate seating. She is sitting in a hospital chair while waiting for a lift chair that has been assessed, approved, and measured for — but not delivered, despite months passing.
does not have the mobility aids or home modifications her current level of function requires. Both remain outstanding under the existing package.
All transport to medical and allied health appointments and all essential errands are provided by me, her daughter, as the sole available family support.
I am a single person and small business owner managing my own household, my own business, and this full caring role simultaneously. I have received no carer assessment, no respite, and no support of any kind.

URGENT: is recovering from a hip replacement, has not walked unassisted since October 2025, is at high risk of further falls, and does not yet have appropriate seating, mobility aids, or home modifications in place. This is an active and immediate safety risk.

Background: A Family the System Was Never Built For

— polio at 18 months, a lifetime of daily limitation without adequate support contracted polio at 18 months of age. She has never known life without its consequences. Post-polio syndrome is not a condition that stabilises or improves it progresses. The muscle weakness, fatigue, pain, and mobility impairment caused by the original infection have worsened throughout ’s life, and the effects of ageing have compounded them further.

is part of a generation of Australians who lived with serious disability for decades without any support equivalent to the NDIS. As lifelong taxpayers, and contributed to this country throughout their working lives. The structured, funded support that the National Disability Insurance Scheme now provides to younger Australians with comparable needs simply did not exist for ’s generation. She managed, as so many of her cohort did, largely without support. She is still being asked to manage without adequate support now.

— victim of a violent crime the state enabled, with no meaningful support in ten years

Until 2016,       ’s husband     was her primary carer. In 2016, that changed permanently

and violently.

At 74 years of age, was attacked without warning in his own backyard while washing his car. The perpetrator was a mentally ill patient discharged from a state psychiatric facility the night before. He was found wandering, came upon , and attacked him from behind with a golf club eight blows to the head. Grievous bodily harm. survived, but his physical and cognitive capacity to care for or for himself was permanently and severely affected.

The state discharged this individual. The state bears direct responsibility for the attack on and for the collapse of ’s primary care arrangements that followed. In ten years, this family has received little to no meaningful support from any government system for

’s injuries, for ’s dramatically increased care needs, or for me as the person suddenly required to absorb all of it.

A 74-year-old man, caring for his wife who has lived with severe polio limitations since she was 18 months old, is attacked eight times with a golf club in his own backyard by a person the state discharged the night before. Ten years later, their daughter a single woman, a small business owner, managing her own household and livelihood is the one driving her mother to every appointment, pursuing equipment that was approved months ago, filing formal disputes and waiting 90 days for outcomes, and watching her business suffer the financial consequences of a caring role the system was supposed to share. How long does the system expect her to sustain this? At what point does the government recognise that the person filling its gaps is also a person with limits, with a business, with financial obligations, and with a life that is being consumed by what the system refuses to provide?

’s Current Medical and Functional Situation

Severe daily limitations from post-polio syndrome has experienced severe daily limitations as a result of contracting polio at 18 months of age. These include significant and progressive muscle weakness; chronic and fluctuating fatigue; chronic pain; severe mobility impairment that has worsened with age; and difficulty with all activities of daily living including showering, dressing, preparing meals, and moving safely through her home.

Hip fracture, compound femur fracture, and hip replacement — October 2025 ’s documented and serious falls risk a direct consequence of post-polio muscle weakness and balance impairment resulted in a broken hip and compound femur fracture requiring a full hip replacement in October 2025. She has not walked without assistance since.

To remain at home safely, requires as a minimum:

A lift chair — assessed, approved, and measured for, but not yet delivered after months of waiting. is currently sitting in a hospital chair since November 2025. This is not appropriate for post-hip-replacement recovery, particularly for a person with post polio syndrome.
Mobility aids throughout the home not yet provided or installed under the current package
Home modifications to reflect her significantly changed mobility needs since the hip replacement outstanding
Ongoing physiotherapy and occupational therapy to support rehabilitation and reduce falls risk access constrained by funding and transport

Every day remains without appropriate seating, mobility aids, and home modifications is a day she faces a serious and preventable risk of falling again. Another fall at this stage of her recovery could be catastrophic. The cost of prevention is a fraction of the cost of another hospitalisation, further surgery, or permanent transition to residential care.

For a person with post-polio syndrome, recovery from major surgery does not follow a standard trajectory. The muscles and nerve cells damaged by the original infection are exceptionally vulnerable to stress and fatigue. ’s recovery requires specialised, well

resourced rehabilitation — not a standard post-operative pathway. She is attempting to recover in a home that has not been modified, without the equipment she has been approved for, relying on her daughter for transport, and with a support package that is the subject of a formal dispute. The system is not supporting her recovery. It is making it harder.

The My Aged Care Funding Dispute and the 90-Day Wait

I have formally disputed the Level 3 funding decision through the My Aged Care portal. The system advises that outcomes will be provided within 90 days. I am still waiting.

does not have 90 days. She is recovering from a hip replacement. She cannot walk unassisted. She is sitting in a hospital chair. She does not have mobility aids or home modifications in place. She is at high risk of falling again. The 90-day dispute window is not

an abstract administrative timeframe  it is 90 days during which       ’s safety is at genuine

and active risk.

During the dispute period there is no interim support, no escalation pathway for urgent medical need, and no mechanism to flag that a person’s situation is acute and the normal timeline is inappropriate. The system waits. waits with it. And I fill the gap.

The 90-day dispute resolution window must not apply uniformly across all cases. Where a person’s medical situation is acute — post-surgical recovery, documented high falls risk, absence of essential approved equipment — an urgent review pathway must exist with resolution measured in days, not months. This is not a complex policy change. It is a matter of basic human safety.

The Financial Impact on Me as a Small Business Owner

I am a small business owner — a sole trader. My income is directly tied to my time and availability. I do not have sick leave. I do not have colleagues who can cover for me. I do not have an employer who will continue to pay me when I am not working. Every hour I spend driving to appointments, waiting in hospital rooms, pursuing equipment and funding approvals, and managing the administrative burden of her care is an hour that does not exist in my business.

The financial consequences of this are serious, direct, and ongoing.

Lost income and lost business capacity

Client appointments, business meetings, and billable work are regularly cancelled, rescheduled, or simply lost because ’s care needs require my immediate attention and physical presence.
The unpredictable nature of ’s needs driven by fluctuating post-polio symptoms, medical appointments, and the ongoing pursuit of equipment and services that should have been delivered months ago makes it impossible to maintain a consistent and reliable business schedule.
The months spent pursuing the equipment, home modification, and funding dispute processes represent a significant and cumulative loss of productive business time that I will not recover.
As a sole trader, I cannot grow my business, take on new clients, or plan my professional future with any confidence while the demands of this caring role remain unresourced and unacknowledged by the system.

Out-of-pocket costs

•  All transport costs for       ’s medical and allied health appointments are met by me

personally. These are not reimbursed. They are not covered by ’s support package. They are simply an ongoing cost I absorb.

Where essential items or services have not been provided by the system in time, I have met those costs personally to ensure ’s basic safety and comfort.
The financial cost of my time as a business owner whose income depends on hours worked is not captured anywhere in any carer assessment or support planning process, because no such assessment has ever been offered to me.

The threat to my own financial security I am a single person. I have no partner’s income to fall back on. I have my own mortgage, my own household expenses, and my own financial obligations. The sustained reduction in my business income as a direct result of providing care that the system should be providing is not a short-term inconvenience it is a threat to my own financial security and independence.

There is a profound irony in this situation. I am working to keep     and      safely in their

home which is the stated goal of the Support at Home Program while the system’s failure to deliver on that goal is simultaneously jeopardising my ability to keep myself in mine.

The financial consequences of caring are not new to me. In 2016, after was violently assaulted and was recovering in hospital, I took approximately a year away from my work to support and manage the family crisis. During that period I relied on a Carer Payment while providing the care that was needed.

I was subsequently issued a Robodebt which, like thousands of others across Australia, was later found to be unlawful and became the subject of a national class action. The experience caused significant stress and undermined my confidence in government systems that are supposed to support people during periods of genuine need.

Ten years later, I find myself once again carrying responsibilities that should be shared by the support system. I am being asked to trust that approved equipment, home modifications and funding will eventually arrive, while my parents continue to face daily safety risks and I continue to absorb the practical, financial and emotional burden. It is difficult not to feel that families are repeatedly expected to fill the gaps while government systems move at their own pace.

The system does not count the economic contribution of family carers. It does not measure the income foregone, the business hours lost, the clients missed, or the financial stress accumulated by the people who fill the gaps it leaves. If it did, the true cost of inadequate aged care funding would look very different. Family carers particularly sole traders and small business owners who have no safety net of their own are subsidising this system with their livelihoods. That must be recognised, measured, and addressed.

Summary of Impact

’s health and wellbeing

Active and immediate high falls risk due to absence of appropriate mobility aids and home modifications following hip replacement
Daily pain and physical strain from sitting in a hospital chair while an approved lift chair remains undelivered
Complicated and slowed post-operative recovery due to inadequate equipment, home environment, and allied health access
Progressive post-polio muscle deterioration due to insufficient physiotherapy and rehabilitation support
Loss of independence, social isolation, anxiety, and loss of confidence
The indignity of sitting in a hospital chair in her own home, months after surgery, because the system has not delivered what it approved

My wellbeing and financial security as carer and small business owner

Sustained and serious loss of business income directly attributable to unpaid caring responsibilities the system should be sharing
Ongoing out-of-pocket costs for transport and essential items not covered by the support package
Threat to my own financial independence and security as a single person and sole trader with no income safety net
Physical and emotional exhaustion from years of being the only person filling every gap
No carer assessment, no respite, no financial recognition, and no pathway to relief
The constant awareness that if I am not available, ’s safety is at immediate risk — and that knowledge does not leave me
I have no husband, no partner, no children, and no support network of any kind. My parents immigrated to Australia from England in 1967 and there is no family here. There is no one to call when I cannot cope. There is no one to step in. I am the only person standing between and an unsafe situation — entirely and completely alone.

Recommendations

I urge the Committee to make the following recommendations:

Urgent review pathways for acute medical situations The 90-day dispute resolution window must not apply uniformly. Where a person is post surgical, at high falls risk, and without essential approved equipment, an urgent review pathway must exist with resolution in days, not months.
Mandatory enforceable timeframes for equipment delivery Once equipment is assessed, approved, and ordered, there must be a maximum enforceable delivery timeframe. For high-risk patients, this must be days. has waited months for a lift chair following a hip replacement. This must never happen again.
Home modifications treated as urgent post-surgical safety measures

Home modifications must be completed at or immediately after hospital discharge for post surgical patients — not treated as routine administrative tasks. Delays directly increase falls risk and preventable hospitalisation.

Support packages that reflect actual post-surgical and post-polio need Packages must be reassessed automatically following major health events and resourced to reflect the changed level of need, without families having to initiate lengthy dispute processes.
Transport to medical and allied health appointments as a standard funded entitlement Transport is essential healthcare access. It must be funded as part of the support package for those who cannot drive and require specialist care.
Assessment processes that capture lifelong, fluctuating, and post-surgical conditions Assessment must incorporate carer and clinician input, be conducted over time rather than at a single point, and be automatically triggered following significant health events.
Recognition of post-polio syndrome as a distinct lifelong condition All assessors, planners, and providers must be trained in post-polio syndrome its origins, progression, interaction with ageing, and specific support requirements. Standard aged care approaches do not apply.
Formal economic recognition and support for family carers who are small business owners or sole traders The economic impact of unpaid caring on small business owners and sole traders must be formally recognised, measured, and addressed within the Support at Home Program. Carer assessments must include economic impact as a standard component. Respite and practical support must be available without carers having to locate and navigate a separate system to ask for it. The program must acknowledge that it is currently transferring the cost of its inadequacy directly onto the people least able to absorb it.
Recognise and respond to the specific vulnerability of immigrant families with no family network in Australia and immigrated to Australia from England in 1967. They have no family in this country. There are no relatives to share caring responsibilities, provide respite, or offer support in any form. The aged care system routinely assumes the existence of informal family support networks in its assessments, in its planning, and in the gaps it expects families to fill. For immigrant Australians who have no family here, that assumption is not just wrong it is dangerous. The Support at Home Program must specifically assess and respond to the absence of any informal support network, and ensure that funding and services reflect that reality.
Pathways for families whose care arrangements were disrupted by trauma or violent crime

When was attacked in 2016, lost her primary carer overnight. No system

adequately responded. The Support at Home Program must identify and respond to these families with urgency.

Acknowledgement and redress for the generation of polio survivors who received no equivalent to the NDIS

contracted polio at 18 months of age and lived with severe daily limitations for her entire life without structured funded support. As a lifelong taxpayer, she deserves a Support at Home Program that finally reflects the full complexity and weight of her lifetime of need.

Conclusion

contracted polio at 18 months of age. She has lived with severe daily limitations every day since. She underwent a hip replacement in October 2025 and has not walked unassisted since. She is sitting in a hospital chair in her own home because the lift chair she was assessed and approved for has not arrived. She does not have the mobility aids or home modifications her recovery requires. I have filed a formal dispute with My Aged Care and I am waiting 90 days for an outcome that has not come.

I am her daughter, her sole carer, and a small business owner. I have no leave entitlements, no backup income, and no partner to share the load. Every hour I spend filling the gaps this system leaves is an hour my business does not have. The financial consequences are real,

serious, and accumulating. I am working to keep     and       in their home which is

exactly what this program is supposed to achieve while the program’s failure to deliver is simultaneously threatening my ability to keep myself in mine.

and want to stay in their home. I want to help them do that. But I cannot keep doing it alone, without support, without recognition, and at the ongoing cost of my own financial security and wellbeing.

I am asking for the equipment that has already been approved to arrive. For the home to be made safe. For the dispute to be resolved urgently. For transport to be funded. For my role as a carer and what it is costing me… to be seen.

has been making do since she was 18 months old. She deserves better than this. And so do I.

Thank you for reading this submission. I hope it matters.

Yours sincerely,

Daughter, sole carer, small business owner — no partner, no children, no support network

4th June 2026

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