Living and dying with a Disability: Why End of Life Care Needs to Change

It is an unfortunate reality of our world that the mainstream hospital system and the NDIS are not well set up for end-of-life care for someone living with a disability.

Often, individuals with a disability have little choice over where they can spend their final days. Families may feel unprepared to provide the level of care needed, or simply wish to remain present as loved ones rather than take on the role of carer during such a difficult time.

For people with an intellectual disability and/or those who cannot communicate verbally, being involved in decisions about their own care can be especially challenging.

When Familiar Becomes Unfamiliar, the truth about living with a disability

If a person lives in supported accommodation, the staff providing daily support are often not trained in palliative care, nor do they have the time required to deliver it.

As a result, many individuals end up spending their final days in a hospital.

When someone is admitted to hospital for end-of-life care, they are placed in an unfamiliar environment, surrounded by strangers. They may not understand what is happening, and past experiences can make the setting feel frightening or overwhelming.

The Funding Gap No One Talks About

It is also important to acknowledge a difficult truth: the NDIS does not fund palliative care unless it is directly related to a person’s disability.

For example, if someone has an intellectual disability but is dying from cancer, they may not receive funding for the palliative care they need.

In many cases, this leaves hospital admission as the only option.

The Four Pathways to Palliative Care

Realistically, there are four main pathways for palliative care for people with disabilities:

1. Hospital careThe person is transferred to hospital, a foreign and potentially distressing environment, where care is delivered by unfamiliar staff.

2. Family-led care at homeThe person remains at home, with family providing most of the care, supported by brief visits from a palliative care nursing service. These nurses may not have experience in disability support.

3. Supported accommodation with limited clinical supportThe person stays in their supported accommodation, with regular staff providing care alongside short visits from a palliative care nurse. Staff may lack both the time and specialised knowledge required.

4. Integrated disability and palliative care supportThe person remains in their home or supported accommodation, receiving care from disability support workers trained in palliative care, along with regular visits from an experienced registered nurse.

The Option That Brings Dignity and Comfort

Option four is, in most cases, the most compassionate and appropriate approach.

It allows individuals to remain in a familiar environment, surrounded by people they know and trust, while receiving the level of care they truly need.

This is something we should be talking about more.

Recent changes to aged care have introduced palliative care payments. It is only fair that similar support is made available to people living with a disability.

How Exceptional Care for You Supports Families During This Time

When ECFY supports someone through palliative care, we become involved as early as possible. This allows the participant and their family to build trust and feel comfortable with the team.

From there, the focus is simple but deeply important, ensuring the best possible end-of-life experience.

That means minimising pain, creating a safe and familiar environment, and meeting every need with compassion, dignity, and care.