lnquiry: The National Disability lnsurance Scheme Amendment
(Securing the NDIS for Future Generations) Bill2026
My name is and I am the mother of a son, who is 44years old who has arare syndrome, 48XXXY Syndrome. This syndrome occurs in about 1:10000 births and includes many physical, intellectual, Mental Health aspects and sight impairment. Persons with 48XXXY syndrome have many Musco-skeletal abnormalities, including generalised low muscle tone, which impacts all the internal organs as wellthe physical strength and mobility. Bony health is abnormal and osteoporosis will develop in early adulthood as persons with 48)C0ry are androgen deficient which is vital for healthy bones and teeth in males.
This syndrome impacts greatly on general life and functionality over the years. Persons with 48)CffY syndrome also develop many complicated health issues that research has shown are directly linked to 48XDff syndrome. These develop as the person ages and include, but are not limited to: o Peripheratvascutar disease and devetopment of venous utcers o Schizophrenia with psychosis and depression, loss of short-term memory o Development of large thrombosis o Risk of aspiration and frequent chest infections from low muscte tone o Steep aponea r Asthma r Muttipte attergies o TyPe 2 Diabetes r Riskof seizures o Major dentat issues- weak, chatkyteeth r Mobitity issues o Ongoingdeterioration of vision.
Prior to the introduction of the NDIS rny son needed to be moved to supported accommodation betongingto the Department of DisabitityServices in a regionat centre as his mental heatth and speciatist heatth needs were unavaitabte in the rurat community 300km awaywhere the famity home was. When the NDIS commenced, he was assessed and approved for a ptan which included Supported accommodation, Sociat and CommunityAc6ess, Capacity Buitding, consumabtes and Assistive
Technotogy funding categories. This has assisted him in maintaining functionatity and mobititywith some independence through a comprehensive range of services that airn to maintain muscte strength, a degree of mentat heatth stabitityand some quatity of tife.
1 . Since the inception of the NDIS I have self-managed my son’s funding attocations that are in his NDIS Ptan. This has enabted choice, so the service providers and attied heatth clinicians are the best suited to his needs. I note in section 33 of the proposed tegistation that imptementation of a 3-month funding attocation of the ptan funding is recommended instead of the current 12-month attocation. I am concerned that there witt be issues with this model as service providers, maintyfor Supported lndependent Living and Sociat and community access often provide regutar invoices each week, but the adjustment invoices for things tike irregul.ar hours used for sickness and pubtic hotidays are not issued atthe time but some months afterthe date, which is more than 3 months. I recentty received the invoice for the 202512026 Christmas /New Year pubtic hotiday period and irregutar hours used some 6 months after the actual time. Currentty my son is on an extended ptan where the last 12-month ptan has been extended for a further 12 months, so this made ctaimingthese invoices simpte usingthe portat, but if he was on a new 12-month ptan then these invoices woutd need to be ctaimed using a manuat ctaim and this can take many months to be processed. I have had experience with manuat ctaiming in the past where there was never a resotution and the agency finatty wrote off the cost of the invoice for services provided as there was no outcome with the manual claim process. Witt it be necessary to resort to using the manual ctaim process afterthis 3 month funding rnodet is imptemented?
lf this 3-month attocation process is imptemented witt any funds remaining after 3 months be tost to the participant or witt these funds stitt be availabte to ctaim invoices raised by agencies for the three-month time period passed? Witt this S-month rute a ppty to Assi stive Tech notogy a nd Co nsu mables?
My son requires a custom-made cattiper and custom-made boots to mobitise. These take months to be finatised and require multipte fitting appointments throughout the devetopment process, and it takes about g months for this cattiper and boots to be compteted. There is onty one provider in Queenstand, and this is based in Brisbane, some 650km from the regionat town where my son lives. lf this 3 month funding modet is apptied to Assistive Technol,ogy Functing then the process for custom made cattiper and boots witt be unattainabte.
Consumabtes witt be another concern if there is a 3-month cut off as the tevel ofconsumabtes required varies from one 3-month period to the next, especiatty when my son has an active venous ulcer that is being managed jointty by the General Practitioner, Vascutar Speciatist and a vjsiting nursing service. Wound care requirernents change
depending on the progress or non-progress of the heating of the venous utcer, so requirements are not uniform from one 3 month period to the next.
2.Section 94 of the proposed tegistation states “The NDIS witt ontyfund NDIS supports forthe impairments that meetthe disabitity”. I have no concernswith ensuringthe impairment is tinked. to the identified disabitities, but the concern here is that assessors do not have a knowtedge of what is tinked directty to various syndromes, especiatty syndromes that are rare. I have had to provide scientific evidence muttipte times to re prove an impairment is directty reLated to 48XXXY syndrome to assessors and the tfibunal, so previousty attocated funding can be returned to my son’s ptan’ The knowl.edge of assessors as to what can be futty funded in other programs eg. Medicare is often inaccurate. ln the past I have been totd muttiple times that there is futty al,tocated fundingfor an item or service in another program but on research have found this information is inaccurate. Another issue is NDls requesting comprehensive reports, but these are not read or read comptetety, or a keyword is seen, but not the comptete sentence that provided the futl, information. An exampte of this woutd be a statement in a physiotherapy report “mobitises independentty at home using a 4 wheeted watker”. ln this instance ontythe words’mobitises independentty“were noted so the assessor decided that the previousty attocated funding was not required, even though the home is a purpose buitd house and to go outside the person requires futl assistance to safety navigate the outside wortd.
The rote of the funding categories “Assistance with Sociat, Economic and Community participation and the Capacity Buitding Supports of Heatth and Wett Being and lmproved Daity Living Skitts in my son’s ptan are vitat for him maintainingthe tevet of heatth, functional,ity and quatity of tife he currentty has. The Assistance with Sociat, Economic funding atl.ocation provides support workers to assist with accessing the communityto attend a targe range of medicat appointments, both GP and Speciatist and Attied Heatth, as his comptex heatth is mana$ed by six different speciatists. This funding attocation atso assists him to participate in various heatth retated al’tied heatth programs/consuttations that work towards maintaining his functionatity and mobitity in a safe manner. These activities take up the butk of this funding except for a smatter componentthat is used to attow access to the group programs of Art and woodwork. So, without this atlocated budget then he coutd not participate in the$e altied heatth programs, some for which are funded using the Capacity Buitding funding altocation in his ptan, These medicat sessions and attied heatth programs that work together to I maintain a tevet of independence and quatity of tife as his disabitity witl not improve, was told previousty by an €1ssessor that al.tocated fundingwas to al,tow improvement in
his condition, this is totatty incorrect as 48[O(YSyndrome does not improve but the aim is to iust maintain functional levetthrough ongoing efforts to maintain what muscte strength that is present. The assumption that significant others linformat supports are availabte to fitt the support gaps that would result is incorrect, especiatty with the disabLed adutt. I note that the first section of the ptan is never reviewed afterthe initiat plan is devetoped. so as the years progress this information that was correct on the first ptan becomes inaccurate. Previous informal supports and services no longer exist; with time the famity supports changelreduce as parent/ famities become aged or members are deceased and other previousty tisted supports become non-existent. The adutt disabted person is tiketyto have a very timited amount of informal supports avaitabte, It is my impression that many NDIS participants use these funding categories for the main purpose I have expanded in the previous paragraph, Therefore the suggestion that reducing funding in these categories for att participants woutd onty cause more hardship to the vutnerabte persons in the disabted community that find tife difficutt to navigate. I have no issue with attempting to address any real identified fraud, but
penal.ising the disabted person is not the sotution. I have major concern if tegisLation togive the minister the power to make sweeping changes/decisions to the vutnerabte disabted person’s NDIS ptan if the comprehensive assessment process has not provided solutions. This may cause much hardship to a vutnerabte person who is atready struggtingto cope in society as a whole.
Cost saving coutd also be achieved by reducingwaste within the NDIS program in areas such as: r Muttipte letters addressed to the sarne address statingthe same information, which has atready been emaited via mygov and personal email are sent. o Accuracy in the assessment process woutd prevent errors and prevent the disabted person and their advocates from needing to todge a request for a “Review of a Reviewabte Decision’ o I have found in the past that the “Review of a Reviewabte Decision” process can be a waste of time as the reviewer may just readthe altocated ptan to the participant or their advocate and stitt not refer to any reports submitted. This situation then forces the disabted person and their advocate to l,odge an appl,ication to the Tribunal. The Tribunat process can be a tong process, but I have found a resotution/ agreement can often be reached. The NDIS emptoys lawyers to fight the disabted person and their advocate; this cost is huge and coutd be avoided if the assessors and the assessment process were accurate and evidence based in the beginning. ( mother/EPOA)
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