Submission re NDIS bill
27th May 2026
Minister’s right to cut NDIS costs
I am a severely disabled NDIS participant. I am housebound and need to recline for 95% of my waking hours. I can no longer cook, clean, garden or drive. I am dependent on NDIS funded support workers for household tasks. as result one conditions ndis plan have many food allergies sensitivities all meals must made from scratch supported because ready made contain chemicals react prospect minister being able cuts across board terrifying don’t know how would access hot maintain yard. The minister has tabled %cut community social participation company uses this budget takes me appointments now supposed attend half those visits Canberra Hospital monitor deteriorating vision breast scans people use funding gain access preventing isolation disability will not cause hardship there way minister actual effects cost cutting individual participants experience feedback mechanism record trauma caused poor decisions ndia does add existing supports already defined reasonable necessary should reduced consultation affected quality life impacts assessed each individual government may be concerned optics high NDIS costs electorate twenty percent Australians with are part so friends family members who vote party unwilling look after some most vulnerable in community
Plans suspended after “reasonable attempts”
to make contact Under new plans can suspend after ““to avoid denying disabled essential support My daughter autism level never answers her phone unlikely agree talk NDIA staff note file only contact nominee However NDIA staff routinely phone instead myself Given that fail take request of to contact
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1589
Strengthening the Link Between Impairment and Need for Support
Strengthening the link between impairment and need for support might seem like a simple solution to able-bodied people or those with clear-cut disabilities; however, it poses significant challenges particularly among individuals suffering from poorly understood complex diseases such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Under new requirements, participants would have to justify every single symptom associated with complicated chronic conditions. This will disproportionately discriminate against invisible disability holders who are predominantly women affected by under-researched illnesses including autoimmune disorders and ME/CFS due to gender biases within both medical research and healthcare institutions at large which in turn could exacerbate existing inequities present today.
National Disability Insurance Scheme Amendment
Submission: 1589
falsely believing ME/CFS to be psychological. This causes untold hardship, as severely disabled people are denied support. In my case ME/CFS gives me severe orthostatic intolerance. in other words being upright makes me very ill exacerbating all symptoms I become cognitively physically incapacitated So need recliner laptop stand tips up vertically so can type while lying down Even then can work on computer for couple hours good days Need expensive medical grade compression wear replaced every months CPAP machine keep breathing at night Cleaners gardeners Support workers cook take essential face appointments Sometimes needed wheelie walker Also hypermobile with connective tissue disorder common in ME/CFS sometimes need braces and supports Need an ME/CFS-aware physiotherapist help heal injuries arising from connective tissue disorders stave off deconditioning without exacerbate ME/CFS Have mast cell activation syndrome many others like this give widespread food intolerances so must prepare everything scratch Under new regulations would have fight recognition each co-condition advocate each necessary support This might possible if NDIA heeded research studies but it does not All of essentials supported danger because strengthening link between support impairment relies understanding disability question In the case of ME/CFS that is non-existent Without doubt tightening diagnosis result denial even when disease listed plan For example NDIA staff assume EDS only affect muscles joints Deny other supports although caused by EDS Staff fail recognize EDS also compromise membranes such as gut blood brain barrier Fail to recognize compromised membranes trigger immune cells called mast cells predominate cause sensitivities foods medications chemicals substances touch skin Then deny funding dietitians worker low reactor food scratch NDIA staff will also fail recognizing cognitive deficits psychological conditions leaky blood vessels barriers Consequently they denied access coordination psychology Medicare provides some psychology funding covers about half actual cost clinical psychologist It already clear ndia read research Staff do understand supports And unfortunately understanding NDAI staff very limited Tightening
National Disability Insurance Scheme Amendment Bill
Submission 1589
The proposed bill states that supports should be granted on the basis of “research and evidence in relation to the support that is published, peer reviewed and generalisable”. ME/CFS research has been underfunded for decades. It should not be our job to educate NDIA staff about our disease and justify legitimate supports down to the last detail. Most people with ME/CFS struggle with poor cognition For months at a time I have struggled to make simple phone calls or write one-line replies How will navigate increased bureaucracy? The problem complex chronic diseases affects autoimmune Ehlers Danlos Syndrome many other conditions bodies do checklist approved symptoms Furthermore compound single symptom may incapacitating already spend over $20k per year out pocket medical appointments medications supplements because Australia’s system behind best practice for ME/CFS main source income pension cannot afford fill gap if NDIS reduced cope People gaslit blamed severe disease few managed access NDIS traumatized myself included Bureaucrats no understanding disability let alone ME/CFS determine what we can access They decisions lives those decide quality life We survive Please don’t changes NDIS harder References Carruthers van de Sande De Meirleir Klimas Broderick Mitchell Staines Powles Speight Vallings Bateman Baumgarten-Austrheim Bell Carlo-Stella Chia Darragh Jo Lewis Light Marshall-Gradisnik Stevens (2011). Myalgic encephalomyelitis: International Consensus Criteria Journal of Internal Medicine 270(4) https://doi.org/10.1111/j.1365-2796.2011.02428.x
National Disability Insurance Scheme Amendment Bill Submission
Submission 1589
National Institute for Health and Care Excellence. Myalgic encephalomyelitis or encephalopathy/chronic fatigue syndrome Diagnosis management Royal College Physicians Guidelines downloaded https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#assessment-and-care-and-support-planning-by-an-mecfs-specialist-team accessed October , .
Cairns R Hotopf M Chronic Fatigue Syndrome Prognosis Occupational Medicine Oxford England 55( ) - https://doi.org/10.1093/occmed/kqi013
Hvidberg MF Brinth LS Olesen AV Petersen KD Ehlers L Quality of life patients with myalgic encephalomyelitis chronic fatigue syndrome ME/CFS PLoS ONE e doi: /journal.pone.
Steven ID McGrath B Qureshi F Wong C Chern I & Pearn-Rowe B Beliefs attitudes reported actions towards Australian family physician 29() -. World Health Organization ICD International classification diseases (th revision) chapter Z Retrieved from https://icd.who.int/ Mirin AA Dimmock ME Jason LA Research update relation between disease burden research funding USA Work, -, doi: