Better links and more timely referrals between the National Disability Insurance Scheme (NDIS) and the wider health system are needed if people living with disability are to have better access to palliative care. 

“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,” says Camilla Rowland, Chief Executive Officer, Palliative Care Australia (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.” 

 Palliative Care Australia has made a number of recommendations to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, with the view to increase access to palliative care for all people living with disability. 

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

“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 co-ordination 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. 

“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. 

“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,” Ms Rowland says.