Submission to the Government on the Proposed NDIS Changes
From: Stephanie, mother of Otis (a child with cerebral palsy)
Location: Regional Victoria, Australia
I am writing to share my concerns as a parent of a child with cerebral palsy and to express how deeply the proposed changes to the NDIS Act will affect our family, our community, and countless others in similar situations.
What the NDIS means for us right now for our family, the NDIS is not just funding – it is what keeps Otis well, helps him participate, and supports him to learn, connect, and grow. Otis is only just entering primary school, and we are still fighting to build the social and community supports he needs to feel included and safe. The NDIS is what makes that possible for us.
These proposed changes have not been clearly explained to us, and we do not yet understand the full impact they will have on our family. That lack of clarity is frightening, because even small reductions in supports can have serious consequences for a child like Otis and for everyone who supports him. How these changes impact our family, friends, carers, and community.
The NDIS supports not just Otis but every one around him —our family,friends ,carers,andthe widercommunitywho helphim live afullerlife.Ifsocialandcommunityparticipationsupportsare reducedorremoved,Otishouldbelessabletoconnectwithothers,paticipateinschoolactivities,builde therelationshipshe needstothrive.Weareonlyjustbuildingthesupportsnow,a nyreductionwouldbema jorsetback . Our main concern isth ehugeimpactonOtiss health.Ifcapacity-building supportswere reducedor removed,theimpac tonO tisshealth would be enormous.Capacity- buildingsupportshelp himevelopskills,stays strong,m anagehis cerebralpalsy ，an dp articip ateindailylife.W ithoutthem,hisealth，development anda llwellbeingw ould b atseriousrisk，ando rwhat? Concernsa bouttheproposeddefinitionof“permanence”Oneo f themaj orchangesinthislegislationrelatestohow theNDIAdefines “ permanenc ” inrelationtod isability.C erebral palsyisa lifelongdisabilit y.Changing how perm anc ence i s definedcreates fear,uncertainty andunnecessarybarriersforfamilieslikeourswhoneedcertaintyands ta bil ity ,notmoreobstacles. My request I am askingthe government to: • Clearly explain these changes inp lainlanguage that families can understand • Ensurethatcapacity-b uilding,social,andcommunitysupports are not reducedorremoved for children with permanent disabilities like cere bral pa lsy • Keepthedefinition of “permanent ce nse” stableandfair fora ilieswho already faceenoughchallenges • Listento thelivedexperienceoffamili es who rely onthen D IS tok e epourchildrensafea ndhealthy . The NDISisessential fo rt Otiss. Removingorreducing supportswouldno tjust affecthim—it would afect our whole familysystem ，ou rc arers ، ou rf riends anda ur community.Th ank you foreading this submission.Steph anieClark-WebbMother o ft otisRegional Victoria， Australia