Ankylosing Spondylitis participant experience (Participant experience)

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National Disability Insurance Scheme Amendment

Submission: Securing the NDIS for Future Generations Bill, 2026

Submissions:

In relation to proposed bill which will see automatic reduction of Social & Community Participation Funds by 50% I would like not just provide feedback but start warning this WILL cost lives; there’ll be suicides because it causes isolation. Secondly believe cutbacks are direct violation Article [Article] (UN Convention Rights Persons with Disabilities) states, citizens have equal right live communities choices others shall take effective measures facilitate full enjoyment persons disabilities their inclusion participate including ensuring these rights: a) Citizens disability opportunity choose place residence where whom they reside basis equals obliged particular living arrangement; b) Citizens disabled access range home residential other support services necessary personal assistance needed prevent isolation segregation them; c) General population available on same basis citizens disabilities responsive needs.” speak from experience had removed hours social community participation since last year – mistakenly BUT insight into how changes impact people with disabilities. have severe physical stage Ankylosing Spondylitis permanent postural changes make walking difficult painful classified as high falls risk history fall probability spinal cord injury should minimised due immobility unable wipe myself after bowel movement rely bidet assist at home public care reliance electric wheelchair reliant Queensland government MASS system. Had initial approval car modifications could carry me passenger in my wheelchair.

National Disability Insurance Scheme Amendment Bill

Submission: Submission-1575

along with the 22hours social participation gave a good quality life – same person without disability. My OT assisted applying wheelchair which was on June . The all terrain magic v6 wheel chair could climb kerbs state-funded couldn’t - this aspect increased access but never made independent need whilst supporting community planner approved removed hours commuting off week went hour spoke her at she would “never approve if didn’t reduce costs elsewhere plan” explained grateful modified vehicle gratefully giving increased access BUT taking hours commuting off needed using AT; unable load and unload rely workers drive as well provide personal care while Community has progressed expected year had move standard Department Housing QLD property accessible property with accessibility bathroom voluntarily surrendered license increasingly difficult neck shoulder checks safely driving around discussion delegate explaining struggle manage little daily assistance (well known people Ankylosing Spondylitis experience mins hrs morning pain stiffness waking) also have both bladder bowel incontinence wipe after motion due increase Assistance Daily Living per day enable two showers per day potentially create 2 shifts per day At time my disability progressing I had an of daily assistance funding further refused from weeks only flexibly inactive sleepover supports month used effect removing overnight support essentially isolating me home such what met Liz Tim Gold Coast meant opened bowels pm night wasn’t left sit faeces until began it away bidet when having needed not limited hoping otherwise open within hours care per day home even more distressing Agency through lawyers representing them changed entire to managed because using that weren’t funded in plan the overnight support travelled Sunshine Coast Gold Coast cousins Perth Gold Coast If don’t can use overnight support enforcing travel avoid where bidet is rather isolating being included community question long NDIS think okay leave myself sit own faeces lack 24/7 support feel answer shouldn’t be forced any length travelling

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

Submission 1575

meet family and friends that have come from interstate I need access to 24/7 care. If I have a bowel movement at 10:00pm, it’s not until you experience having faeces dried on your body while waiting to receive adequate hygienic cleaning when an NDIS fails to meet basic needs like this.

National Disability Insurance Scheme Amendment Bill

Submission: Submission-1575

shopping, banking etc. When requested reinstatement of social & communit… text continues as per original document

  • A return equipment scheme where equipment can be refurbished and reallocated to participants who qualify for a wheelchair, bed etc
    • Capping the cost of reports – how is it equitable if my OT has 10years experience and can write a report in 5 hours and another participant’s OT has 12months experienceand takes 12 hours to write a similar report. If reports were capped to a maximum of6hrs it would prevent excessive charges - Create participant profiles with checklists of reasonable and necessary supportsfunded and stop making us continually get reports and justify the same supports planafter plan.I have been on the NDIS since it rolled out in my area in 2019andsince before I was on the NDISIhave required custom orthotics and medical gradefootwear,test somehow these wereleft offmy most recentplan, an internal reviewdecided findingcustomorthoticsandmedicalgrade footweartwasmiddid not meet valuefor money or beneficial criteria and denied thosesupports.Aftera seriesofcomplaintsan escalations planner did aplan variationto includethefunding forthecustom orthetics anda ndicalgr ade footwear.By nowthe Agency should havetick listofoitems Ineed fundedin anyplana sresult o f m ydisability an d th e p lan shou ldn ot be able t o i mpl em ented w ithoutthose supportsincluded
    • I urge the senate tonot pass this legislation- give some assurance back tot he disability community that their plans are safeand re look at other cost savingmeasures toi mp le ment Regards,