Parent's account of daughter's progressive neurological disorder and NDIS impact (Family or carer experience)

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

Submission 2081

Dear Senators, Could you please consider my submission to the senate community affairs legislation committee? Many thanks. Yours faithfully [redacted]

Dear Committee Members I write as the parent of a profoundly disabled 19-year-old daughter with a progressive neurological disorder.

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

Submission 2081

Bit bit away state governments stepped their support services including DSS DDS public health services people had no option turn ndis Many recipients were target ndis BUT there alternative options. Unscrupulous providers cash in The price guide does not discriminate physio with years experience physio year experience former underpaid latter overpaid lead influx unscrupulous providers oversight quality service provided often recipients charged differently others nature being an advocacy difficult has been lucky parents advocate her at times refused providers sharp practice managed funding carefully frugally as we could all sorts organisations taking cut offering value money includes plan managers pay bills without diligence coordinators add nothing meaningful allied professionals offer inexperienced therapists whilst encouraging them charge top dollar providing superfluous reports and use non face charges these take cut many do life recipient Many see government funded meal ticket limited regard lifelong disability just trying live closer which Australians take granted The grew started move its roots intend group Now situation where that group fighting existence lives depend on NDIS fact remaining alive depends incredibly frightening It’s inconvenient it is We know families understand murder suicide might look only option know separated demand pressure caring disabled relative know families depths despair advocating relative to continues request unnecessary reports unreasonable unfair statements wide range interested parties either read ignored delegates of the NDIA In world think delegate end phone never met recipient more knowledge understanding person than trusted professional Not disingenuous wasteful resources request ignore report can considered liability Yes NDIS spending needs contracted daughter intended scheme outset Her

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

Submission 2081

options, and our options in caring for her are limited and the NDIS has made that manageable. We implore you to consider carefully both inclusion and exclusion criteria, stop wasting this precious funding on unnecessary reports, discriminate between providers to ensure the most experienced.providers are appropriately acknowledged and remunerated,andprovide timelyandappropriatefundingtotheintendedrecipientsofthiswonderfulschemewhichshouldbethemostfunctionallyimpairedwithlifelongdisability.Bydoingthisalongwithestatefundedservicesforthelessimpaird,theNDISwouldreturnitoit“roots”. Iamgratefulyourconsiderationofthesubmissionandamahaappytobecontactedspeakfurthershoulditrequireclarification.Yourfaithfully,,