Palliative Care and Disability: The Boundary Problem

Palliative care and the disability boundary: the gap that sends people to hospital to die

In April 2024, Palliative Care Australia’s chief executive Camilla Rowland described a problem the sector had been raising since June 2023: people under 65 with cancer and other life-limiting illnesses were falling through the gaps between the NDIS, aged care and the health system. Some had been refused daily living and functional care supports through the NDIS. Without those supports, many ended up in hospital — even though they did not need acute clinical care.

Palliative Care Australia put a figure and a price on the fix. Its 2024 federal budget submission proposed a solution costing $77.6 million over three years, which it said would help at least 3,000 people and their families. The Peace of Mind Foundation, in a media release in February 2024, said people with brain cancers had been particularly affected.

Read that carefully, because it is a precise description of an absurd outcome. People who want to be at home, who do not need a hospital bed, and who are not receiving acute medical care, are occupying hospital beds — because the system cannot work out which part of itself pays for somebody to help them shower.

That is the gap this guide is about. We are a registered provider supporting participants across New South Wales. We deliver no medical or nursing palliative care, and nothing here is medical advice. What we can set out is where the funding boundary sits, how to work with it, and what the disability sector specifically gets wrong about dying.

First, what palliative care actually is

Two misconceptions cause real harm and are worth clearing up before anything else.

Palliative care is not only for the last few days. It is care focused on quality of life for people with a life-limiting illness, and it can start at diagnosis. It can run alongside active treatment — somebody can be having chemotherapy with curative intent and receiving palliative care for symptom management at the same time. Referral to palliative care is not a statement that treatment has stopped or that death is imminent.

Palliative care is not giving up. The evidence is that early palliative care involvement improves quality of life and, in some cancers, is associated with living longer rather than shorter. Families frequently resist referral because they hear it as abandonment. It is the opposite — it is the addition of a team whose entire expertise is symptom control.

For people with disability this matters doubly, because referral tends to come late, and late referral means pain is managed badly for longer.

The boundary, as it is supposed to work

In principle the division is clean.

Health system responsibilities: specialist palliative medical and nursing care, symptom management, pain relief and medications, syringe drivers and subcutaneous medication, specialist palliative care consultation, hospital and hospice admission, equipment supplied through health and palliative care programmes, and clinical advice.

NDIS responsibilities: the person’s existing disability supports. Personal care, daily living assistance, supported independent living, assistive technology, home modifications, support coordination, community participation. These do not stop because somebody has become palliative.

Aged care responsibilities: for people over 65, the equivalent functional supports through Support at Home, which replaced Home Care Packages on 1 November 2025, along with residential aged care where that is where somebody lives.

The NDIS does not fund medical treatment, and medical palliative care is treatment. That part is not in dispute.

Where it breaks

The problem is not the people who already have plans. It is the people who do not.

Consider somebody who is 54, working, independent, and diagnosed with a brain tumour or advanced cancer. Within months they cannot shower alone, cannot prepare food, cannot be left alone safely, and need help overnight. They need exactly the functional supports the NDIS exists to provide.

They apply, and they run into the structure described in this library’s guide on cancer and the NDIS: the scheme requires permanent impairment, cancer is a health condition, and a life-limiting malignancy under active management can be characterised as a health matter rather than a disability one. Brain tumours are on neither List A nor List B, despite List B including motor neurone disease, Parkinson’s disease and several dementias.

Meanwhile the health system’s palliative care services provide clinical care — nursing visits, medication management, symptom review — but are not funded to provide hours of daily personal care. Community care packages are thin. And the person is under 65, so aged care is closed to them.

So nobody funds the showering, the meals, the overnight presence or the help to the toilet. The family does it until they cannot. Then the person goes to hospital, because a hospital bed is the only place in the system where somebody will help them, and a hospital bed is also the single most expensive option available.

Palliative Care Australia described exactly this: the assistance people need is not accessible through the NDIS or through state and territory health services. The advocacy reached ministerial level, with Palliative Care Australia noting then-Minister Shorten’s active role, and the minister’s office asked Palliative Care Australia to act as a point of contact for affected people, carers and clinicians. That arrangement — a peak body serving as the clearing house for a systemic funding gap — tells you how unresolved it was.

Cancer Council Australia’s policy work frames the same problem from the other side: its priorities include clarifying roles between health and disability supports, and it notes that eligibility for additional support is hard to determine without a clear prognosis.

If the person is already an NDIS participant

This is the better situation and it still needs managing.

The plan continues. Becoming palliative does not end NDIS eligibility or cancel a plan. Participants sometimes fear this and it is not the case.

The plan probably needs to change, quickly. Support needs at end of life escalate fast and in ways a plan written a year ago does not anticipate — overnight support, two-person transfers, equipment, increased personal care.

Use the priority pathway. Where there has been unexpected, significant deterioration in functional capacity and appropriate supports are not in place, the NDIA prioritises the decision and aims to make it in two to five business days. Say those words, and provide a letter from the treating team or the palliative care service describing the functional deterioration and its expected trajectory.

Equipment is the thing that most often arrives too late. A hospital bed, a pressure-relieving mattress, a hoist, a commode, a wheelchair. Standard assistive technology processes take weeks or months. End-of-life timeframes do not allow that.

Two routes matter here. The palliative care service itself often has rapid-access equipment loans — frequently faster than anything the NDIS can do, and worth asking about first. And where NDIS assistive technology is being sought, the urgency and the prognosis need to be explicit in the request, not implied.

Support coordination becomes essential. This is the situation support coordination exists for. If the person does not have it funded, ask for it as part of the plan change.

Think about what the person wants to do with the time. Plans fund community participation. If somebody wants to see the ocean, or go to a football match, or visit a sibling interstate, those are legitimate goals and the plan is the mechanism. This gets forgotten in the focus on care tasks, and it is often what matters most to the person.

Dying at home, and what it actually takes

Most people say they want to die at home. Relatively few do, and the reason is usually that the support was not there rather than that the person changed their mind.

What it genuinely requires:

• Specialist palliative care involvement, including an after-hours contact number. This is non-negotiable; symptoms change at night.
• Medications in the house before they are needed. Palliative care services often arrange anticipatory medications so that pain or breathlessness can be managed without waiting for a prescription at 2am.
• Nursing capacity for subcutaneous medications and syringe drivers. This is nursing scope, not support worker scope. A support worker cannot administer subcutaneous medication or manage a syringe driver, and a provider that allows it has a serious problem. Community palliative care nursing must be in place.
• Overnight presence, often for weeks.
• Equipment, in place early.
• A plan for what to do when the person dies — who to ring, what not to do, and the fact that it is not an emergency requiring an ambulance if the death is expected and documented. Palliative care services provide this guidance and it should be written down and on the fridge.
• Family carer support, including respite, because the family is doing the bulk of it and will be exhausted.

Dying in supported accommodation

This is the part the disability sector handles worst and discusses least.

A person who has lived in a group home or SIL arrangement for fifteen years may want to die there. It is their home. It has their things in it and the people they know. Moving them to a hospital or hospice for their last weeks is sometimes necessary and sometimes just easier for everybody except them.

What it requires, honestly:

Scope of practice clarity, in writing. What support workers can and cannot do. They cannot administer subcutaneous medications, manage syringe drivers, or make clinical judgements about symptom escalation. They can provide personal care, repositioning, mouth care, presence, and they can observe and escalate. The line has to be explicit, and community palliative care nursing has to cover what sits on the other side of it.

Training and briefing. Most support workers have never done this. They need to know what to expect as somebody dies, what is normal, what to escalate, who to ring at 3am, and what their role is. A palliative care service will usually provide this if asked.

Co-residents. There are other people living in that house. They will know. They are often not told, not included, and not supported, and then the person disappears and nobody explains. People with intellectual disability are routinely excluded from illness, death and funerals in the name of protection, and the result is unresolved grief that presents months later as behaviour nobody connects to the loss. Tell them, in a format they can use. Let them visit. Let them go to the funeral if they want to. Answer their questions honestly.

Staff grief. Workers who have supported somebody for a decade are bereaved, and they are usually offered nothing. A provider that does not plan for this will lose good workers and will provide worse care in the final weeks because the team is unsupported. Debriefing, time, and acknowledgement are not luxuries.

The practical arrangements. What happens to the person’s room. How the house is told. Whether there is a memorial. Who keeps their belongings. These get handled badly by default and well with a small amount of forethought.

Pain, and the specific risk for people with intellectual disability

This is the clinical issue with the largest consequences and it deserves to be stated bluntly: pain is under-recognised and under-treated in people with intellectual and communication disability, and at end of life that is a catastrophic failure.

The mechanism is familiar from diagnostic overshadowing. Somebody who cannot say “I am in pain” communicates it through behaviour — agitation, withdrawal, vocalisation, guarding, refusing to be moved, changes in sleep, changes in facial expression. If that is interpreted as behaviour rather than as pain, the response is a behaviour strategy rather than analgesia.

What helps:

• Validated observational pain assessment tools designed for people who cannot self-report. Ask the palliative care service which they use and get the team trained in it.
• The people who know the person best. A worker who has supported somebody for years can tell the difference between their distressed face and their ordinary face. That observation is clinical information and should be treated as such, not as an opinion.
• A written baseline. What this person looks like when they are comfortable, so a change is visible.
• Assuming pain where pain is likely. If a person has a condition known to be painful, the starting assumption should be that they have pain, not that they do not because they have not complained.
• Specialist palliative care involvement early, for exactly this expertise.

The corollary risk also exists and is worth naming: medication used to manage distress at end of life must be for symptom control, not for behavioural convenience. Where medication is being used primarily to influence behaviour rather than to treat a diagnosed condition, that is chemical restraint, and it is one of the five regulated restrictive practices under the NDIS, requiring authorisation, a behaviour support plan and reporting to the NDIS Quality and Safeguards Commission. Appropriate palliative symptom management is not a restrictive practice. The distinction is the purpose, and it needs documenting.

Advance care planning

This belongs in the conversation and has its own treatment in this library’s guide on consent and capacity, so briefly:

Record what the person wants while they can tell you. Where they have capacity, an advance care directive and the appointment of an enduring guardian — which in New South Wales a person with capacity can do, choosing who makes health and lifestyle decisions if they lose capacity — are both far better than relying on the default decision-maker hierarchy under the Guardianship Act 1987.

Where formal planning is not possible, record expressed wishes and values anyway. What they have said about hospitals. Whether they are frightened of pain. Who they want with them. Where they want to be. These carry real weight in later decisions and almost nobody writes them down for people with intellectual disability.

Advance Care Planning Australia, on 1300 208 582, can explain the process and the documents.

For people over 65

The NDIS is not available — the age test applies at the point of application and the scheme cannot be joined after 65. The pathway is My Aged Care on 1800 200 422 and the Support at Home programme, which replaced Home Care Packages on 1 November 2025. The highest classification is capped at roughly $108,000 a year and is means tested.

Specialist palliative care through the health system is available regardless of age and is not means tested. For somebody over 65 with a life-limiting illness, the combination of a Support at Home package and community palliative care is the available route, and it is worth engaging with both early rather than sequentially.

Services and numbers worth having

• Palliative Care NSW — information on services across the state.
• Palliative Care Australia — national peak body; its Dying to Talk resources help start conversations about end-of-life wishes, and it is worth asking about accessible versions for people with intellectual disability.
• CareSearch — evidence-based palliative care information for patients, families and clinicians.
• Cancer Council 13 11 20 — free, staffed by cancer nurses, including on symptom management and practical support.
• Advance Care Planning Australia — 1300 208 582.
• My Aged Care — 1800 200 422, for people over 65.
• NDIA — 1800 800 110, for plan changes and priority requests.
• Hospital or community palliative care social worker — in practice, often the single most effective person for sorting out a stuck situation.
• Griefline — 1300 845 745 — for bereavement support, including for family carers and workers.