{"id":38579,"date":"2026-04-23T17:33:28","date_gmt":"2026-04-23T07:33:28","guid":{"rendered":"http:\/\/www.16news.com.au\/?p=38579"},"modified":"2026-04-23T17:33:28","modified_gmt":"2026-04-23T07:33:28","slug":"ndis-reforms-must-work-for-people-with-terminal-illness","status":"publish","type":"post","link":"http:\/\/www.16news.com.au\/index.php\/2026\/04\/23\/ndis-reforms-must-work-for-people-with-terminal-illness\/","title":{"rendered":"NDIS reforms must work for\u00a0people with\u00a0terminal illness"},"content":{"rendered":"\n<p>Palliative Care Australia (PCA)&nbsp;welcomes the&nbsp;Federal&nbsp;Government\u2019s NDIS&nbsp;reform&nbsp;agenda&nbsp;but&nbsp;says the changes must deliver coordinated support for people with disability linked to a terminal&nbsp;(life-limiting)&nbsp;illness&nbsp;or risk&nbsp;worsening&nbsp;\u201cbed block\u201d&nbsp;in hospitals.&nbsp;<\/p>\n\n\n\n<p>PCA&nbsp;Interim&nbsp;CEO Simon&nbsp;Waring&nbsp;said the&nbsp;palliative care sector&nbsp;will&nbsp;seek&nbsp;to&nbsp;work constructively with&nbsp;government&nbsp;on the reforms, while ensuring the needs of people with life-limiting illness&nbsp;remain&nbsp;front and&nbsp;centre.&nbsp;<\/p>\n\n\n\n<p>\u201cWe&nbsp;recognise&nbsp;the Government\u2019s commitment to strengthening the NDIS and improving its long-term sustainability,\u201d&nbsp;he&nbsp;said.&nbsp;<\/p>\n\n\n\n<p>\u201cThese are significant reforms, and Palliative Care Australia wants to engage positively with government on how they are designed and implemented.&nbsp;&nbsp;<\/p>\n\n\n\n<p>\u201cIt\u2019s&nbsp;essential&nbsp;people with terminal illness&nbsp;are&nbsp;not overlooked in the process.&nbsp;For this group, the key issue is not simply whether they can access the NDIS. It is whether they can get the practical, day-to-day functional support they need, when they need it, regardless of which system provides it,\u201d&nbsp;Mr&nbsp;Waring&nbsp;said.&nbsp;<\/p>\n\n\n\n<p>PCA National Policy Director Josh Fear&nbsp;said the proposed shift away from diagnosis-based access and towards functional assessments would create uncertainty for many people with life-limiting illness.&nbsp;<\/p>\n\n\n\n<p>\u201cPeople with terminal&nbsp;illness&nbsp;often have complex needs that can change quickly,\u201d he said.&nbsp;<\/p>\n\n\n\n<p>\u201cThe NDIS can provide&nbsp;very important&nbsp;support for some people in this group, but it will never meet the needs of everyone.&nbsp;That is why reform must also address the longstanding gap in supports outside the Scheme&nbsp;\u2013&nbsp;so the&nbsp;NDIS&nbsp;is not the&nbsp;only lifeboat&nbsp;in the ocean.\u201d&nbsp;<\/p>\n\n\n\n<p>Palliative Care Australia is calling on governments to work with the palliative care sector on the design of alternative systems of functional support for people with disability linked to life-limiting illness who cannot access the NDIS.&nbsp;<\/p>\n\n\n\n<p>\u201cThis is an opportunity to build a better and more coordinated response, including through&nbsp;a new&nbsp;system of&nbsp;Foundational Supports and stronger&nbsp;supports&nbsp;through mainstream health systems,\u201d&nbsp;Mr&nbsp;Fear said.&nbsp;<\/p>\n\n\n\n<p>\u201cWe want to sit down with government and contribute constructively to that work.\u201d&nbsp;<\/p>\n\n\n\n<p>Mr&nbsp;Fear said&nbsp;the palliative care&nbsp;peak body&nbsp;would be advocating strongly on several key issues as the reform process progresses.&nbsp;<\/p>\n\n\n\n<p>\u201cFirst, people with terminal illness must not be left in limbo as access pathways change,\u201d he said.&nbsp;<\/p>\n\n\n\n<p>\u201cSecond, people whose health is deteriorating&nbsp;quickly&nbsp;need&nbsp;to have their&nbsp;support needs met rapidly, regardless&nbsp;of&nbsp;which system is&nbsp;delivering that&nbsp;support.&nbsp;&nbsp;<\/p>\n\n\n\n<p>\u201cThird, clarifying the boundaries between the NDIS and mainstream services must lead to better coordination of care,&nbsp;and&nbsp;not&nbsp;more gaps,&nbsp;confusion&nbsp;or cost-shifting between systems.&nbsp;<\/p>\n\n\n\n<p>\u201cIf we don\u2019t get this right, more patients will be stranded in hospital, adding to those who can\u2019t be safely discharged right now.\u201d&nbsp;&nbsp;<\/p>\n\n\n\n<p>Mr&nbsp;Fear said&nbsp;the&nbsp;community must have confidence that&nbsp;people with life-limiting illness are&nbsp;not forgotten as major changes are made to the disability system.&nbsp;&nbsp;<\/p>\n\n\n\n<p>\u201cWe call on governments to confirm that this group will be a priority.&nbsp;People with life-limiting illness should not&nbsp;miss out on&nbsp;essential support because they do not fit neatly into one system, or because broader cost pressures are being felt elsewhere in the&nbsp;NDIS,\u201d he said.&nbsp;<\/p>\n\n\n\n<p>\u201cOur message is constructive, but clear: we are ready to work with government on practical solutions, and we will&nbsp;continue&nbsp;advocating&nbsp;for a system that responds with&nbsp;flexibility and compassion to people with terminal illness and their families.\u201d&nbsp;<\/p>\n\n\n\n<p><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Palliative Care Australia (PCA)&nbsp;welcomes the&nbsp;Federal&nbsp;Government\u2019s NDIS&nbsp;reform&nbsp;agenda&nbsp;but&nbsp;says the changes must deliver coordinated support for people with disability linked to a terminal&nbsp;(life-limiting)&nbsp;illness&nbsp;or risk&nbsp;worsening&nbsp;\u201cbed block\u201d&nbsp;in hospitals.&nbsp; PCA&nbsp;Interim&nbsp;CEO Simon&nbsp;Waring&nbsp;said the&nbsp;palliative care sector&nbsp;will&nbsp;seek&nbsp;to&nbsp;work constructively with&nbsp;government&nbsp;on the reforms, while ensuring the needs of people with life-limiting illness&nbsp;remain&nbsp;front and&nbsp;centre.&nbsp; \u201cWe&nbsp;recognise&nbsp;the Government\u2019s commitment to strengthening the NDIS and improving its long-term sustainability,\u201d&nbsp;he&nbsp;said.&nbsp; \u201cThese &hellip; <a href=\"http:\/\/www.16news.com.au\/index.php\/2026\/04\/23\/ndis-reforms-must-work-for-people-with-terminal-illness\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;NDIS reforms must work for\u00a0people with\u00a0terminal illness&#8221;<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[2],"tags":[],"class_list":["post-38579","post","type-post","status-publish","format-standard","hentry","category-aussie"],"_links":{"self":[{"href":"http:\/\/www.16news.com.au\/index.php\/wp-json\/wp\/v2\/posts\/38579","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/www.16news.com.au\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/www.16news.com.au\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/www.16news.com.au\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/www.16news.com.au\/index.php\/wp-json\/wp\/v2\/comments?post=38579"}],"version-history":[{"count":1,"href":"http:\/\/www.16news.com.au\/index.php\/wp-json\/wp\/v2\/posts\/38579\/revisions"}],"predecessor-version":[{"id":38580,"href":"http:\/\/www.16news.com.au\/index.php\/wp-json\/wp\/v2\/posts\/38579\/revisions\/38580"}],"wp:attachment":[{"href":"http:\/\/www.16news.com.au\/index.php\/wp-json\/wp\/v2\/media?parent=38579"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.16news.com.au\/index.php\/wp-json\/wp\/v2\/categories?post=38579"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.16news.com.au\/index.php\/wp-json\/wp\/v2\/tags?post=38579"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}