National Disability Insurance Scheme Amendment Submission

Submission: Senate Standing Committee on Community Affairs - Inquiry into National Disability Insurance Scheme Amendment Securing the NDIS for Future Generations Bill Summary: Despite widespread disinformation that COVID-19 is “mild” or “over”, it continues disabling large numbers due primarily because of long-term effects known collectively under the term ‘Long-COVID’. This ongoing public health crisis generates significant consequences across society. The bill’s impacts are likely severe; therefore this submission rejects its entirety at present time. It would not make sense now to restrict access within the scheme but rather expand coverage so all those already affected can continue receiving support while accommodating future cases too.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 2096 cleaning, cannot go to medical appointments without assistance, namely cleaning can’t do my own shopping. another way I am lucky but not because of Long COVID. someone has no noticeable cognitive impairment. it’s important that I feel responsible writing quality submission on behalf others in the same situation.

National Disability Insurance Scheme Amendment

Submission 2096

revealed that the vast majority of respondents need the kind of support that the NDIS provides. According to the submission: Debilitating impacts of Long COVID across all aspects of life were reported: Most people(96%)reported difficultywith basic housework along witcookingand caringfor others.(90%). Many experienced adaily reductionin their capacityto shop50%or socialise[61]%, more than [60]% felt unsupported.[Austin et al., p.]211). Basedonthesurvey evidence,the authors formulated recommendations.Twoof therecommendations ofthe AustraliaLong Covid Communitysubmissionwere:

• Support us: PeopleWith LongCovidneed intensivesupport including employment support, income support,supportforequipmentamedications,and supportsuitable workplace adjustments.Weneeds work environments supportive avoid getting re-infected design jobs accommodate our needs.We have lots offer cut every section occupation industry.Therebe nationwide systemic approach. And:- Partner withus Workdesign policy research Acknowledge lived experience can be your partners Don’t make decisions without us.Further while preparing for International Long Covid Awareness Day inour communityformulated list measures call government implement order address public health crisis went through democratic process voted five points third point reads:

National Disability Insurance Scheme Amendment

Submission: Securing the NDIS for Future Generations - Bill 2026

Our community has collectively decided on what we need through surveys and votes. Both our survey results (—in particular Point ⎩�of those surveyed) and vote callings explicitly ask government officials to provide more support, specifically calling out increased access to the NDIS scheme. The reason behind widespread support lies in the fact that most individuals cannot gain entry into schemes despite their severe conditions being considered permanent by medical professionals due to disabling fatigue, pain, cognitive impairments among others which prevent us from leaving homes, cleaning bedsheets or even eating without assistance.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 2096

While some people with ME/CFS or Long Covid have been able to access the NDIS after their doctor outlined why these treatments are inappropriate for them, for many people with Long Covid this pathway is either difficult or impossible. The current Clinical Practice Guidelines for treatment of ME/CFS still recommend GET and CBT. These guidelines are under review and many hope that recommendations will be removed when new guidelines release; meanwhile, many continue prescribing such therapies as they’re deemed appropriate despite evidence suggesting otherwise.[1] For example: during my first visit seeking care regarding Long COVID symptoms back in January ’23 at my GP’s office I was advised to lift weights weighing five kilograms! Had followed his advice likely would’ve ended up bedbound due exhaustion. It unlikely then most can get onto NDIS via letter outlining reasons why GET & CBT aren’t suitable options - acquiring one often involves long process known as “doctor shopping” which we simply don’t possess energy/cognitive capacity/money needed carry out. P8 bill requires exhausting all possible treatments before accessing NDIS hence considered improper by us. b.Due lack government funding/commitment there’re numerous obstacles preventing those affected from receiving necessary medical attention: money issues stemming directly from inability work because illness itself prevents it, some treatments not covered publicly (e.g., Stellate Ganglion Block costing approximately $700 per session), prescription medications like Low Dose Naltrexone also excluded on PBS system with costs over 100 AUD per prescription even if sought through public health services; drugs prescribed for treating conditions related to Long Covid are similarly expensive and inaccessible without private insurance coverage or substantial financial resources. The cost of seeing specialists privately is prohibitive, especially when considering the high prevalence among our community who may benefit significantly but cannot afford such treatment financially. another barrier: physically getting access doctor/treatment site; many house-bound or bed bound leaving home exacerbates symptoms leading permanent decline in functional capability particularly rural areas where travel distances longer than urban counterparts plus informal support lacking assist mobility challenges faced daily due condition severity.

National Disability Insurance Scheme Amendment

Submission: 2096 Explicitly ignoring a person’s financial and geographic circumstances would be extremely unfair and would exclude those with greatest need from accessing the NDIS. The requirement to exhaust treatments that are financially and geographically inaccessible will increase the inequity of access to the scheme and leave the most vulnerable Australians without support. c.Long Covid is a new disability which only began seven years ago.The science around Long Covid is still evolving,and there is not enough research funding to generate answers for us.In this situation,it can be difficult to determine what the appropriate treatments for us actually are. a.Inthe caseofLongCovid ,itcanbedifficulttodeterminewhichsupportneedsarise directlyfromwhicheimpairments . In addition,thechangeinwordingunderparagraph34(1)(aa),subsection17(B)and subsections32L(2)fromsupporthas“ arising from” impairments to supporthas “directly arisefrom ”impairments. GiventhecomplexityofLongCovidaditsmanyoverlappingimpairmentsthe proposed change in wording is deeply concerning.ApersoncouldhaveEhlersDanlos Syndrome,autism,POTS,MCASandeME/CFS aswellasLongCovid.Indeed,thiskindofof circumstanceiscustomaryinthelongcoviddiagnosiscommunity.Howwillsuchaperson acces NDIS suppor under thenewlegislation?Whichsupporthandneedarisestherequired directfrom which impairment ?How willthen DIA determinethissupportifdoctorscannot figure it out?

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 2096

b. Another concern with the change in wording is that it likely means people will only be able to access support due to what arises “directly from” one condition but not another. Such artificial compartmentalisation is not consistent with the nature of Long COVID which commonly involves interconnected impairments. While it is next to impossible to access the NDIS with Long COVID, some people have nevertheless been able to access NDIS support via other disabilities that commonly overlap with Long COVID such as autism If support is only granted to what arises“directlyfrom an impairmentit isthe likelythatpeoplewill loseNIDSsupportin cases whereLongCOVIDhas exacerbateda pre-existingconditionforwhichtheyhave accesstothe schemeThe bill’s greatly reduced flexibility willexcludepeoplenwith complexdisabilities3 PartofthefBillwhichblocks peopl eaccessingNDISiftheirconditi oncanbe coveredby workers compensation a Manyp eoplew ithL o ngC OVIDcontracted Covid at work and by rights should betitledto Workers Compensation Howeverther experienceinp racticeo fmany p eo ple w i th L oncOvidisthatitis extremelydifficulttogetWorkersCompensation for our conditi OnIf t he Billispassedonpaperiwtlooklike peopleswit hLon gCOIDcang et suppor tviaW orkers CompensatiOnInpracticewillonlyfurtherentrenchtherecurrent reality; thatt vastmajorityoft peoplewi th Long CO IDcannotaccesseither W ork ersCompen sationORthen D ISI fsomeoneh sappliedfo rw or kers Com pensat ionand been told they are ineligible it wouldn’t be fair fo the NDIAtodeterminetha tt personwas injuredaworkan d is thereforeineligibleford NDISWhile I am making acasethatParliamentshouldrejectthisbillinits entirety ifitispassedthewording • recommendthat Parliamentdoesnotpassthe bill. • uurgetthe government to restart thereformprocessafterconsultingproperlywith disabledpeopleancarers Ascasualtiesofagrowing an importantpublic healthcrisis peop lew ithLongC OVIDa ndME/CFSneedsto b eincluded in this process Theproce ssneeds tob ea ccessibl efors usallow ingus propertime toc oll ectively formul at ewe 1vs.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 2096

• The government needs to co-designthe NDIS with people with disabilities, including those who experience Long Covid or Myalgic Encephalomyelitis/ heumatological factor syndrome. We need a collaborative design process which will lead to greater access within our conditions rather than less.

• In future when drafting legislation about NDIS access for people experiencing Long COVID or Myalgic Encephalomyelitis/ Cognitive Behavioural Therapy should not seek advice from proponents of graded exercise therapy.