Palliative Care Australia calls for improved disability access

Palliative Care Australia (PCA) has submitted 18 recommendations to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, in the hope of greater access to end of life care.

The organisation took the insight of its members into consideration in drafting the recommendations, which suggest that greater access to palliative care is reliant on timely referrals between the National Disability Insurance Scheme to the healthcare system.

“The NDIS has an emphasis on people being able to exercise choice and control but is not sufficiently responsive to the rapidly changing health needs of people,” said Camilla Rowland, Chief Executive Officer of PCA.  

“Our aim is to support quality of life well before the end of life, but the heart-breaking fact is that  people might die while waiting to receive their NDIS package and any associated palliative care included. 

“This is not just an NDIS challenge, the whole health system needs to allow for timely responses in such circumstances, so that human rights are respected and people with disability can make the most out of life and relationships.”

The submission outlines the desire for those living with disabilities to speak up for their preferences surrounding death and to prepare accordingly, but through social, cultural or general systemic barriers, are often left feeling sidelined by the system.

“The work of the Commission has been so important in shining a light on what needs to be done right across the care economy to better support loved ones, carers, and those living with disability,” said Ms Rowland. 

“We are pleased to make a submission to the Royal Commission and add to the growing awareness of the positive power palliative care can have in people’s lives and on the sustainability of the health system. 

“Our 18 recommendations are based on the feedback and experiences of our members across Australia. For instance, palliative care social workers told us of the gains to be made if there was better integration and coordination across disability services, aged care, primary health, and acute care settings. 

“Continuity of care is so important to better patient outcomes – especially for people with disability, and it drives efficiencies through the health system itself. 

“While there are a number of issues like the NDIS that are specific to the disability community, many of the matters we have raised in our submission connect with wider reforms and investment needed across health care.”

The 22-page report further elaborates on the wider scope of slow, exclusionary and inaccessible palliative care treatment, highlighting the peripheral impact on carers, family and friends through the inability to provide adequate support.

“PCA’s May budget submission presents the Government with a number of costed initiatives that need and deserve funding as part of wider reform linked to aged care, disabilities, Medicare, and primary care.”

In the report PCA is seeking the following from the Federal Government:

• $240m per year for for more in-home and community palliative care services,
• $50m per year (across five years) for a new National Agreement between the Commonwealth and States/Territories to increase access to specialist palliative care services,
• $2.75m per year (over three years) to develop a national palliative care workforce plan,
• $20.1m per year (over three years) to upskill Registered Nurses employed in residential aged care in palliative care,
• $1.2m per year (over three years) for Palliative Care Australia, to continue to advocate for the care of people with life-limiting illness as the sector’s peak organisation.

“I want to thank Commissioners for elevating the needs of people living with disability and acknowledge the work already underway at a Federal and State level to address the issues raised. There is more to be done and PCA looks forward to playing our part,” said Ms Rowland.

Do you support the need for funding for increased access to palliative care for people living with disabilities?

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