National Disability Insurance Scheme Amendment Submission

To the Community Affairs Committee RE: National Disability Insurance Scheme Amendment Bill 2026 I wish to respond to this bill, and do so providing some background context on dealing multiple chronic illnesses since birth leading permanent disabilities NDIS major part scheme accepted. Born congenital malformations kidneys bladder digestive system transplant recently failed dialysis days week hours day home now increased approximately total treatment start finish no guarantees second transplant Bladder reconstructed intestine appendix create prior nappies first years life downside though chronic infection mucus build up surgery clean out bladder one two per year hospital admission need rest lifetime thirdly creation ostomy deal constant electrolyte issues not helped kidney disease All physical these are long led mental health including diagnosed PTSD ASD type previously known Aspergers Syndrome Bipolar Disorder Type cannot treated due my kidney Lithium toxic for kidney Impacts those conditions range sensory alarms gunshots fireworks balloons bursting whereby brain uncontrollable panic makes spending time any building fire alarm anxiety inducing longer I’m in that building through have times depression then mixed with high levels of confidence before going back into a depressive phase.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1879

Prior to the NDIS, I was receiving state based block funding for a certain amount of hours with very little choice on who I could pick to provide assistance. My apartment would end up extremely messy as I lacked the executive function and stamina to keep up with housework and looking after myself. In the years leading up to dialysis as well, compounded by my mental health issues and electrolyte issues, my stamina collapsed requiring the use of an electric wheelchair to get around which will require me using in medium term. The NDIS allowed me develop confidence independence now at university contributing economy society without constant worry trying manage health ensuring disability while ensureing remains clean critical both home dialysis immune suppression Prior NDIS frequently hospital dealing electrolyte infections Since then have gone few occasions majority planned without electrolyte infection therefore saving states federal governments money treatment ensured not taking bed others The key areas bill concerned about: Functional supports Section 9B I issue applying functional support case fluctuates some days appear perfectly normal responsive other withdrawn Some can quite bit energy other lethargic motivation disappears problem Functional supports does consider chronic illnesses such kidney disease affect disabilities like mental health body itself common has affecting each other interact parts body make symptoms more obvious disabling

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

Submission 1879

However, in fluctuating disabilities like my own, they are not constant but enough to cause disruption and difficulties on a near daily-to-weekly basis.

I am concerned that if this bill goes through how will functional supports be considered? Will fluctuations functionality be considered or would the NDIS simply say you’re disabled even though your level could still be severe when body functions interact affecting each another? And just said myself I might go few days where appear fine before all downhill again; predict duration or timing happening If turned up at an evaluation what happens good day? When bipolar mood swings me appearing confident energetic explain to NDIS? Standard assessment doesn’t take wide impacts variability disability potential variations impact every single day. Even people well accepted cerebral palsy may impacted severity depending manage without support worker have wheelchair some days independent friend has CP while he gets quite survive less no NDIS provides. Changes require impairment permanent Proposed subsections: 24(5)(a) & 25(1B)(a) proposed section 25A. These sections looking ensuring impairment is permanent needs account treatment unavailable due medical reasons eg unable lithium treat bipolar disorder kidney disease top of that although kidney disease covered under NDIS interactions with other can impactful long term cannot cured lifelong condition transplants dialysis forms come trade-offs including immune suppression leading high infection risk higher cancer heart failure early onset dementia in turn

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

Submission 1879 can make depression be much more severe than in other people without kidney disease, this is due to the toxin buildup affecting the brain itself and in a failing kidney, this could lead to existing mental health and psychosocial disabilities becoming more severe over time and can become permanent even with treatment. I know with myself as my kidney transplant failed over a 10 year period,mymentalhealthconditions,in particular my BipolarandASDtypebecamemoreobviousandsevere.When Ihadahelthytransplantinmyoungeryears,Iwasabletomaskbettermys ASDTypewhereIl washalotmorerefunctionalandalbeselfmanagemypanicattacksifafirealarmwent offforexample,andmypressivestateswereslessseverer.As Igotolderandyourney getclosetofailure(butnotenoughfailurefordialysis), Ibecamemoreabledomaskandle manageuncontrollablepanicattacksoftfa suddenloudnoisewentoffandmyp pressivestateswentfromdaystoweeks,motivationcollapsing.Ididtry treatmentbutthistneverworked, m ymentalthconditonshaddeterioratedtothe point of no return , an d o f course i n th e caseo fm yBipol ar,i t was never able tobetreatedinthefirstplacedueto thekidnysissuesan ditne verwillbe. So in terms oft h issectionoft hebill,itiscriticalthatothermedicalconditionsthataymay notfallunderthenDIS stillneedtobeconsideredaseventhoughtheyarenotincluded under then DIS, yestillinteractwithoth erdisabilities andimycasencannotbetreatdue to them edical condition,k idney disease. I have a lot more tot say,b ut thisismuchasmymentalandphysicalenergycan take me,sowil havetoleave itforotherstospeakonmybehalfof otherconcern ing parts offthis bill .Thank you for your time anda hopethissandothersubmissions isseriously considered.Otherwise peopleleftoftheadISfindingsatesupportsto beinsufficient willlead toe increaseinhospitalisationpotentiallyevendeath.Sincerely