{"id":7712,"date":"2026-05-08T21:33:08","date_gmt":"2026-05-08T21:33:08","guid":{"rendered":"https:\/\/www.europesays.com\/australia\/7712\/"},"modified":"2026-05-08T21:33:08","modified_gmt":"2026-05-08T21:33:08","slug":"australians-with-motor-neurone-disease-fear-losing-priority-pathway-under-ndis-reforms","status":"publish","type":"post","link":"https:\/\/www.europesays.com\/australia\/7712\/","title":{"rendered":"Australians with motor neurone disease fear losing priority pathway under NDIS reforms"},"content":{"rendered":"

Australians with motor neurone disease (MND) who have rapidly changing needs fear they will lose a priority pathway to access the National Disability Insurance Scheme (NDIS) under the federal government’s planned changes.<\/p>\n

The federal government has been warned the support system helping people with MND must move “faster than their disease” or the caring responsibilities will fall back unfairly onto their families.<\/p>\n

Currently people diagnosed with MND are able to access the NDIS via a priority pathway overseen by staff who specialise in the disease that approves support packages within seven days.<\/p>\n

But advocates and patients have been unable to get assurances that this option will remain under a planned overhaul of the NDIS announced last month.<\/p>\n

More than 160,000 people to be kicked off NDIS as Labor overhauls eligibility<\/a><\/p>\n

Health Minister Mark Butler has unveiled the government’s plan to curb the ballooning growth of the NDIS and save the budget a projected $35 billion over four years.<\/p>\n

By 2027 the government wants access to the NDIS to be determined by a person’s functional capability<\/a> rather than diagnosis.<\/p>\n

The average life expectancy is about 27 months for a person diagnosed with MND, a rapidly degenerative illness with no cure.<\/p>\n

MND Australia chief executive Clare Sullivan said the priority pathway to the NDIS had been a “game changer” and “must be protected”.<\/p>\n

“This includes an assessment from someone with expertise in MND, quick decisions for funding, and a package allocation that meets their overwhelming needs,” she said.<\/p>\n

“MND is an excellent case study for how the NDIS is working \u2026 but there is huge community concern about the mooted changes.”<\/p>\n

Todd Johnson, 50, was diagnosed with MND four years ago and said the disease needed a “different model and rapid responses” from the system that is looking after people.<\/p>\n

“People living with MND are losing function every week and the system has to move faster than the disease,” he said.<\/p>\n

“If it moves slower, families have to carry the cost and then the patients suffer and dignity’s lost.”<\/p>\n

Nidhi fought for 10 years to get on the NDIS. New cuts leave her ‘in limbo’<\/a><\/p>\n

Nidhi Shekaran is one of thousands of NDIS participants waiting to learn if their services will be impacted as part of sweeping government reforms to the scheme.<\/p>\n

Mr Johnson said the under the current NDIS priority pathway he was able to quickly access additional support as his disease progressed.<\/p>\n

“When I first got diagnosed I was still working and I was fully healthy and walking around,” he said.<\/p>\n

“Now I’m in a wheelchair and I need a bit of support for things like getting dressed \u2026 and even getting to the point where just rolling over becomes difficult.<\/p>\n

“But because the NDIS has been responsive it’s been a wonderful experience because I don’t wait too long for things.”<\/p>\n

Mr Johnson, who is the president of MND Victoria, said people in the community with the disease were “very nervous and quite frightened” about potentially losing both the priority pathway and aspects of their package funding.<\/p>\n

“When you consider the pathway might not be there, it’s really concerning because a package that’s right today might be dangerously inadequate in three months,” he said.<\/p>\n

“If we go back into the [mainstream NDIS] system it won’t keep up with our needs and the speed of the progressiveness of the illness.”<\/p>\n

Health Minister Mark Butler said the government would be “engaging deeply” with the disability community on the reforms it intends to pursue later in the year.<\/p>\n

\"Mark<\/p>\n

Mark Butler says participants with high needs will have access to critical supports. (ABC News: Matt Roberts)<\/p>\n

“The thresholds and assessment process for determining substantially reduced functional capacity will be developed in the second half of 2026 based on expert advice from a technical advisory group,” he said.<\/p>\n

“Participants with the greatest level of needs will continue to have access to critical supports needed to live well and with dignity.”<\/p>\n

The changes flagged by Mr Butler in April are designed to slow the NDIS growth from a projected $70 billion to about $55 billion by 2030.<\/p>\n

In addition to stricter eligibility, Labor plans to impose caps on some participant spending and tougher rules for providers to combat fraud and rorting.<\/p>\n","protected":false},"excerpt":{"rendered":"Australians with motor neurone disease (MND) who have rapidly changing needs fear they will lose a priority pathway…\n","protected":false},"author":2,"featured_media":7713,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[2],"tags":[22,21,9115,6263,9114,9113,6021,6020],"class_list":{"0":"post-7712","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-australia","8":"tag-au","9":"tag-austrlia","10":"tag-health-minister","11":"tag-mark-butler","12":"tag-mnd","13":"tag-motor-neurone-disease","14":"tag-national-disability-insurance-scheme","15":"tag-ndis"},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/australia\/wp-json\/wp\/v2\/posts\/7712","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.europesays.com\/australia\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.europesays.com\/australia\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/australia\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/australia\/wp-json\/wp\/v2\/comments?post=7712"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/australia\/wp-json\/wp\/v2\/posts\/7712\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/australia\/wp-json\/wp\/v2\/media\/7713"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/australia\/wp-json\/wp\/v2\/media?parent=7712"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/australia\/wp-json\/wp\/v2\/categories?post=7712"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/australia\/wp-json\/wp\/v2\/tags?post=7712"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}