Submission: National Disability Insurance Scheme Amendment

Background/Why This Issue Is Important To Me:

I am a sole parent to my 1 year old severely disabled nephew who is now aged fourteen years-old. The issue affects him because he requires significant ongoing custody due to multiple severe conditions that limit functional capacity including Spastic Dystonic Quadriplegia Cerebral Palsy, Cortical/Cerebral Visual Impairments requiring Enteral Meals via Jejunostomy or Gastrostomies for Dysphagia, Non-Speaking abilities supported through High & Low Alternative Augmentative Communication Devices (AAC), Lennox-Gastaut Syndrome necessitating constant monitoring with Epilepsy, and Incontinence managed using continence aids.

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

Submission 1974

My Concerns:

While I already have concerns about the existing support reductions I am seeing for many families across the school environment and being told by NDIS Planners, “You’re your parent it’s your job to be available 24/7 to care and provide support for your child.” As most children grow, they develop skills and abilities to care for themselves. Amongst many things they learn how to walk, drive, cook, shower toilet themselves; go on independent outings with friends movies concert sleepover grandparents friend’s house. For my nephew large proportion his school mates isn’t case always reliant someone provides them 24/7 care supports while parents normal baseline year old would asleep bed reducing supports these vulnerable children likely see more parents burning out broken families divorce relationship break ups potentially moving into out-of-home care as kinship parent of my nephew familiar systems additional pressures layers red tape adds providing best possible life areas where concerned bill changes are: - Assessing functional capacity switching robo-style assessment o Given significant number planners NDIA no understanding disability impacts individual adequate assess individual s functional capacity o Thankfully huge Occupational Therapists OT Australia understand functional capacity spent several years studying become OT ongoing professional development maintain accreditation ot spend significant time writing functional capacity reports often ignored or not read planners Reassessment Changes plans This another area concern growing changing will need change their plans due host reasons could include § A change in their functional capacity a change new appearance disablety New Assistive technology growth ageing equipment unserviceable unable repaired eg My nephew about have spurt aware he needs wheelchair require trials reassessment Our vehicle costing us each day process purchasing modification Unfortunately this requires reassessment

$35,000+ cost of the modification included in my nephews NDIS plan.

• Changes in goals due to moving into teenage years: Now that my nephew is a teenager he also requires changes to his NDIS goals due to changes in his interests and needs as he ages. These all need consideration for legislation amendment; unfortunately one-size-fits-all approaches aren’t effective solutions: o The NDLS will require individuals seeking appropriate medical treatments before receiving disability-related supports from an individual making decisions about such treatment? Will this involve employing medical professionals? every medical treatment carries risks/benefits regardless if it’s suitable; not every necessary treatment covered under public health systems where many with complex/multiple disabilities rely, as examples vagus nerve stimulators treat epilepsy but come with significant risk benefits intrathecal Baclofen pumps relieve spasticity yet carry 25% chance additional surgeries infection risks requiring reliable supports too. given most planners don’t understand crossover between disability/health concerns/treatments robust measures needed ensure disabled people are not left without support while waiting or unable pursue them because they can’t afford or won’t take unnecessary risks.

Submission 1974

approximately 7 hours of broken sleep each night as my nephew needs to be repositioned multiple times a night and also requires his food bottles to be changed as he receives most of his daily nutrition while he sleeps. We went through an 18 month process at his last plan reassessment which almost damaged me completely.The planner refused to provide explanations for her decisions,the internal reviewer provided inadequate explanationsand didn’t even read the correct reports (they read out-of-date reports)and thenthe Minter Ellison Lawyers(who showed up once during themultiple AAT sessions)andan NDIS/AAT staZ member both had no conceptof disabilityor the impacts off suchonan individual’s life.We eventually gota reasonable andreworkable outcomebutit was soul destroying, intrusive andaalmost broke.§ Applying acookie cutter approachandsaying well childrenonly need xhours in home support ora hours capacity buildingwouldbe unreasonableas thee impactoff every child’edisabilityandaliving situationis differentdepending on their circumstances

Summary/Conclusion:

While I understand that it is necessaryforatightening withinthen DISsand areductionin fraudulent providers taking advantage ovulnerable peopleitis shouldn’t bethe costofof:vulnerablenchildrenadultswithcomplexmultiple disabilities.Putting more pressureona lready stretched parents,families,and carers.Familyandrelnship breakdowns due toi ncreased responsibilities put oneparents families andcarer s.Makingitmoredifficultforexhildrenandyoungepeoplewith multiple complexdisabilitiesto be ablet have independent developmental experiences like those oftheir normal baseline peers.Eg. Going tothemoviesortenpin bowling with friends etc. Thanks for your consideration o my response.