Submission

Attention:

Committee Secretary, Senate Standing Committee on Community Affairs Submitted via email at community.affairs.sen@aph.gov.au date 28/05/2026 My name is Alex; as someone who identifies with being both disabled since age fifteen due primarily but not exclusively because of autism spectrum disorder level two alongside multiple sclerosis relapsing remitting disease alongside hypermobility syndrome. in February twenty-fourth after enduring long battle was finally approved under NDIS scheme despite initial acceptance solely based upon one single diagnosis report pertaining specifically towards said Autism whereas numerous other reports were available regarding HSD & MS respectively; at time barely functioning unable keep up house chores could leave home no more than twice weekly shower activities also severely impacted owing poor orthostatic intolerance symptoms. it took another twelve months continuous complaints and very precisely worded letters emails from myself team doctors eventually got inclusion for Multiple Sclerosis Hyper mobility Syndrome into NDIS plan followed further year later additional support measures incorporated within my personal care plans enabling actual utilization thereof. already high burden proof requirement to access NDIS system most people need submit countless specialist generated comprehensive FCA (functional capacity assessment) documents amongst others including full diagnostic report occupational therapist letter GP Physiotherapist Neurologist Rheumatologist Cardiologists Pain Specialist together self explanatory document explaining which treatments apply where necessary - completely untrained staff decide our fate in this regard. one condition listed B namely Multiple Sclerosis falls under List B: Conditions that are likely result permanent impairment.

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

Submission 2208

And yet, it still took over 12 months of back-and-forth and full FCA order to gain access to the NDIS MS. I had very clearly demonstrate a severely reduced functional capacity inorder to get access.The idea that certain diagnosis gains you entrance simplynot true, list ’A’isonly such caseofthatandeventhen,youhaveaspecific amount evidenceyoucan’t just say ““I have this disability now give me money.”“

IknowSO.MANY.People whohavesevere life-altering Disabilities not beenableaccessNDIS due stringent criteria barriers accessthe government wants make HARDER accesstotheNDS,a move absolutely reflected opinions Disabled community whole.

After finally receiving support world changed much better.I multiple supportworkers independently help attend doctors appointments groceries cook clean everything else in between. Now actually having support job first time my life able go supermarket person choose outmy groceries average week do other things love more often gardening small balcony instead spending every waking minute trying survive. Find continuous attack on NDSD media slogging paint negative light continual war disabled people alone know many seriouslyDisabled can barely function continuously knocked back by NDIS refused help. Yet governments answer continually making harder tighten reigns kick more people off scheme still so many evengeton. See peoplecommunity mentally distressed changes scared lives scared for those they see wondering how willsurvive if supports cut,howwillgoback not being anything theirsupports taken away.See mysupport workers frustrated because needs of

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2208

their clients and worry what will happen when they end up with not enough hours to get the supports they need to have to survive. Yet I see the mainstream media and the average joe celebrate our downfall continuously.The new changes are particularly terrifying.I just fought to get my community participation budget raised, as it was oneof the only budget categories I completely depleted in 2025. don’t useitto goto themovies.don’tuseittogoto coffeewithmysupportworkers.usefor goingtodocorssappointments atthehospital.useforthegoingtosupermarketandthepharmacy,togethingsI needittosurvive.Iftheycutmybudgetby30%,that’s30%less timesintheyearican gooutside myhouseandoimportantthings.Imgoingtobreak down funding that Ihave.Idahavingfundingfordays ofCommunityaccessforevery monthsthat’sonly daysaweek.Two dayseachweekiamableleavethe housewiththesafetyofs supportworker Ifthey cutthat bythen leavesmeabout1½daysa weekicantusesupporwork outside home.Howisevenenoughtogo Drs appointmentsgo supermarketgopharmacyeachweeklyalone do literally anythingelse.But hey evenif Idid wantusetheirudgettotomovieto or for coffee with mysupport worker thats right todo so Disabled peopledeserveto domorethanjust godoctors appointm anddobreemimumsurvive. ifcanonlydo recreationalactivitieswithe helpasupportheneedthsupportands shouldbeokay.Thepush to changetomandatory registrationof supportsalso concerns me.Iusall ofmysupport workerscompletely as independents always havefromdayone IhaveheardNOTHINGbut absolutehorror stories frompeople know aboutsupport work agencies.Employing mysupportsdirectlymeans;

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

Submission 2208 • I always get the same person, know who I will be getting and when • No annoying middleman who takes a big cut of the fees, all the money actually goes directly to the person who is helping me All I have heard from friends about agencies is that they continually cancel shifts at the last minute, send whoever they want to shifts, have ridiculous cancellation policies yet find it acceptable to cancel on a Disabled person 1hr before a shift. And they take a huge cut of the fee for the privilege. And these are the so called ‘registered’ providers who are ’doing the right thing’and “the way forward for the NDIS”(why they want everyone to be registered). The NDIS continually doesn’t even act on complaints that people put forward about registered providers whether it be fraud abuse whatever you like Continually ignored not enough evidenceis there response most people get What point forcing everyone registerwhen NDIA nd NDIS quality safeguards commission don’teven act majority complaint receiveWhat does fixing any problems. I also lot concern removal whole-of-person assessment replaced single eligible impairment consideration(Schedule Part3). Have three very distinct medical conditions as do disabled people quite common more than one fact NDIS completely understands Each my three conditions affect life force choose would mean areas support ultimately reduce functional capacity can’t psychology supports under physical disability which rely Autism process things problem solve go through/learn coping strategies emotional distress related being Autistic My meltdowns gone down DRASTICALLY since receiving this regular basis something could beforehand due poor DSP My Multiple sclerosis creates numbness legs bladder issues cognitive temperature dysregulation difficult manage without proper supports place Could NOT receive autism or Hypermobility disorder diagnosis My Hypermobility brutally

National Disability Insurance Scheme Amendment

Submission:2208

affects my joints, my joints are slowly breaking down due to frequent subluxation. could not receive joint braces,mobility aids or home modifications related to my loss range movement other supports related condition under MS diagnosis because does cause these symptoms.The notion separating things allow support one of them barbaric WILL immediate negative effect people forced lose when able pick one condition.My functional capacity would go very backwards quickly without now.I actually feel more akin regular member society’mable outside work home attend appointments ease instead suffering through all. I am EXTREMELY concerned about ICAN assessment tool have since first announced.This will absolutely capture people’s conditions fairly accurately My own experience with NDIA staff last few showed they knowledge necessary carry out reasonable manner.FCA contained EIGHTY ONE PAGES.Including information WHODAS Spider questionnaire Hypermobility specific screening Bristol Impact Hypermobility Questionnaire BIoH Fatigue Severity Scale Lower extremity scale and an Upper extremity scale.It also included hours face-to-face time in OT then many collating together writing up report.Face any you think that can be achieved by ONE administered someone medically qualified hour same thing is abhorrent downright laughable. I absolute love for the I-CAN whatsoever especially as someone has rarer misunderstood conditions (Hypermobility spectrum disorder) trying get access conditions NIGHTMARE due to being so uneducated fact had multiple reports from treating professionals who SPECIALIZE yet still couldn’t their head around it grant despite disabling me over 10 years.There

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2208

was a decent paper trail of 10 years of treatments and troubles, at one point a staff member even told me “there is no evidence of Ehlers danlos syndrome” yeah no shit, because that’s not even the condition I was applying for! So of course there isn’t!. HSD and EDS are very closely linked but very much distinguished as two separate things and it was very clear in all my documentation that I was applying for Hypermobility spectrum disorder and not EDS. Yet they still couldn’t even get that. And you somehow expect these types of staff to administer an assessment to people when they can’t even work out something that would take a 3 minute google search? It is an insult to disabled people across the nation. None of these changes will actually really do anything to fix the real core issues of the NDIS. The NDIS continues to present fake solutions to the problems they create which in reality only continue to punish disabled people and take away our choice and control over our own lives. They set the price guide.* They* set the entire thing up.Yet somehow it is OUR faultthatitisgoingthewaytheylewant?.Wearesimplyusingthesystemthateysetupthebestwecaninordertosurvive.EverythinginthisanendmentisaninsulttoDisabledpeopleacrossthecountryandisdowntight infringingonourrightsashumanbeings.Youwantedawayourownautonomy, ouredependence,Ourrighitreview decisions,totquestionthings.Wontletushavemorethanonedisabilitywhenmedicallythatquiteuncommon,anddon’stocareonebit whatactualmedicalprofessionalssayor want.Oneeasywaytocutmoneywouldbetostopspendinghundredsand thousandsofdollarseveryearfightingAGAINSTdisabledpeoplerealatethe ARTwithlawyers;butnotbystopppingpeoplefromgointotheadatatall- but by just giving people the supports they asked for in the first place.It would genuinelyjustcostlessto fundthestupportsthantospendmillions tryingtopreventpeoplefromaccessingsupports.Especialllywhenthaaat justoftenendsupsidingwiththeparticipantawardngwhattheyaskedfor ultimatelystawastingtonsofmonneyandrseourcesbothsidess.Butsorry Iforgot,theaveragetaxpayerinthecountrihassgrudgeagainst anythingtheysseeasa‘handoutbecausewelivina dystopian society whereit’s notokay tohelpthedisadvantaged.Coolsystemwe havehere.

Submission 2208

Signed Angrily,

Alexandra Paine.