SUBMISSION FOR NDIS
I am the mother of four adult children. Three have a very rare genetic disability called Congenital Disorder of the Glycosylation1a which affects every muscle and body function as well as speech, coordination – learning abilities similar cerebral palsy, Their ages range from forty-three (43) through fifty three(53). They also suffer complex medical conditions.My husband & I have fought everyday just trying keep them alive and provide basic care for them.To enable us being available when emergencies happen we run small businesses aroundfortyyears ago.They are incredibly brave loving people determined contribute society.When little set up support group desperation enough people help lobby basic therapy services school age lobbied get special education unit put in their primary high schools.All creative so twentyfour year old art gallery now displays their work dozens other local artists including those disabilities indigenous artists.Nearly always funded their medical bills out own pockets including our art gallery.The National Disability Insurance Scheme has been incredible support exhausted despairing many years now have support workers to share burden.Devastated government attacking most vulnerable community Please don’t penalize our children friends families why not rid fraudsters? Only allow Australian citizens or long term residents be providers. Check they no criminal background founder one groups my children went with convicted pedophile had operated six years!Please register providers make sure appropriate qualifications but don’t unnecessary red tape frequent audits.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission: 2118
I set up another support group in 2021 to provide group social & therapy spaces for people with disabilities.COVID killed that! Ideally we would love to see group therapy social spacesto help trim the NDISby having morepeople helpedratherthanoneonone.
I have been fighting hardfor a Family Villagetobe builtwhichis retirement complexwith parentsof adult childrenwitdisabilities.They could all be livinginthesamecomplex& supporting eachother & sharing therapieservices. Wehavearealestateagency & I sellalot of development sites.I’vebeenbegging mydevelopers tobuiltthis.Theylikelthe idea but say it hasn’tbeendone before so won’t riskit! If anyone wants me t send them plans &thet vision please emailme Please ask thparents & carers what is needed fix then DIS get ridwaste make world leader disability care Regards