Proposed NDIS reforms risk treatment disruption for people with cerebral palsy (Participant experience)

Submission 595

​24​​May​​2026​

​Proposed​​NDIS​​reforms​​risk​​treatment​​disruption​​for​​people​​with​​cerebral​​palsy​

​Dear​​Committee​​Members,​

​I​​am​​a​​person​​with​​cerebral​​palsy​​and​​have​​been​​supported​​through​​the​​National​​Disability​ ​Insurance​​Scheme​​for​​the​​past​​six​​years.​​I​​am​​writing​​because​​I​​am​​very​​worried​​that​ ​proposed​​reforms​​will​​cause​​treatment​​disruption​​for​​people​​like​​me​​with​​permanent​ ​disability​​who​​rely​​on​​consistent​​supports​​to​​stay​​well,​​independent,​​and​​able​​to​​participate​​in​ ​everyday​​life.​

​I​​am​​particularly​​concerned​​about:​

​●​ ​changes​​to​​“functional​​capacity”​​and​​“reasonable​​and​​necessary”​​supports​ ​●​ ​changes​​to​​what​​is​​considered​​value​​for​​money​ ​●​ ​increased​​standardisation​​of​​assessments​​and​​planning​ ​●​ ​limits​​on​​flexibility​​caused​​by​​funding​​periods​​and​​removal​​of​​rollovers​ ​●​ ​mandatory​​registration​​reducing​​choice​​and​​access​​to​​trusted​​providers​ ​●​ ​reforms​​that​​may​​make​​it​​harder​​for​​people​​with​​permanent​​disability​​to​​maintain​ ​ongoing​​therapy​​supports.​

​For​​the​​past​​six​​years,​​the​​NDIS​​has​​been​​a​​lifeline​​for​​me.​​It​​has​​enabled​​me​​to​​manage​​pain,​ ​muscle​​tightness,​​spasticity,​​mobility,​​and​​balance​​through​​regular​​maintenance​​supports.​​This​ ​has​​allowed​​me​​to​​continue​​working,​​participate​​in​​my​​community,​​and​​preserve​​my​​walking​ ​ability​​as​​I​​age.​

​For​​most​​of​​my​​adult​​life,​​I​​privately​​funded​​my​​healthcare​​-​​including​​physiotherapy,​ ​podiatry,​​footwear,​​and​​guided​​exercise.​​As​​my​​support​​needs​​increased​​with​​age,​​this​​became​ ​impossible​​to​​maintain,​​even​​though​​I​​worked​​full​​time.​

​Before​​I​​had​​access​​to​​the​​NDIS,​​I​​could​​often​​only​​afford​​intensive​​bursts​​of​​therapy​​when​​I​ ​reached​​crisis​​point​​and​​experienced​​episodes​​of​​acute​​pain,​​including​​times​​when​​I​​was​ ​unable​​to​​walk​​and​​required​​extended​​periods​​off​​work.​

​Since​​being​​on​​the​​NDIS,​​I​​have​​seen​​how​​these​​acute​​episodes​​can​​be​​avoided​​through​ ​regular​​maintenance.​​Access​​to​​regular​​therapies​​such​​as​​physiotherapy​​and​​exercise​ ​physiology​​is​​essential​​for​​people​​with​​cerebral​​palsy​​to​​maintain​​strength,​​mobility,​​and​ ​function,​​and​​to​​reduce​​deterioration​​and​​long-term​​health​​costs.​

​I​​have​​successfully​​managed​​a​​modest​​package​​of​​these​​supports​​through​​the​​NDIS.​​I​​have​ ​not​​requested​​major​​changes​​to​​my​​plan​​since​​it​​began,​​except​​on​​one​​occasion​​when​​the​ ​Agency​​sought​​to​​reduce​​supports​​and​​I​​was​​required​​to​​go​​to​​the​​Administrative​​Appeals​ ​Tribunal​​(now​​the​​Administrative​​Review​​Tribunal),​​where​​that​​decision​​was​​reversed​​and​ ​my​​original​​package​​of​​supports​​was​​found​​to​​be​​reasonable​​and​​necessary.​

​Concerns​​regarding​​the​​proposed​​reforms​

​I​​am​​fearful​​that​​changes​​proposed​​in​​this​​legislation​​could​​disrupt​​or​​limit​​my​​treatment​ ​through:​​standardised​​decision-making;​​cuts​ ​across​​whole​​funding​​categories​​(now​​and​​in​​the​

Submission 595

​future);​​and​​restrictions​​on​​hours​​for​​individual​​supports.​​Changes​​including​​these​​will​​cause​ ​harm​​-​​both​​for​​me​​and​​for​​others​​with​​permanent​​disability.​

​The​​new​​legislation​​is​​broad​​and​​the​​impact​​is,​​frankly,​​difficult​​to​​understand​​-​​and​​at​​times​ ​impenetrable.​​However,​​it​​is​​clear​​that​​access​​to​​reasonable​​and​​necessary​​supports​​may​ ​become​​more​​restricted​​in​​a​​variety​​of​​ways​​and​​could​​be​​subject​​to​​ministerial​​change​​at​​any​ ​time.​​I​​genuinely​​do​​not​​know​​how​​I​​will​​fare​​under​​this​​raft​​of​​complex​​changes,​​and​​I​​am​ ​worried​​that​​the​​gains​​I​​have​​made​​over​​the​​past​​six​​years​​could​​be​​lost.​

​Even​​now,​​the​​funding​​I​​receive​​does​​not​​fully​​cover​​everything​​I​​need​​and​​I​​pay​​privately​​to​ ​fill​​in​​the​​gaps.​​Any​​reduction​​in​​supports​​is​​likely​​to​​cause​​me​​increased​​pain,​​reduced​ ​mobility,​​and​​a​​decline​​in​​my​​functional​​independence​​over​​time.​​Reducing​​access​​to​​supports​ ​may​​save​​money​​in​​the​​short​​term,​​but​​it​​will​​create​​greater​​costs​​for​​both​​participants​​and​​the​ ​system​​over​​time.​

​Plan​​flexibility​​and​​continuity​​of​​support​

​I​​am​​concerned​​about​​proposed​​changes​​that​​limit​​the​​ability​​to​​carry​​over​​unspent​​funding​ ​between​​plan​​periods.​​This​​flexibility​​provides​​an​​important​​buffer​​that​​allows​​me​​to​ ​self-manage​​scaling​​up​​supports​​during​​periods​​of​​increased​​pain,​​fatigue,​​mobility​​decline,​ ​and​​functional​​difficulty​​without​​requiring​​urgent​​plan​​reviews.​

​My​​supports​​and​​spending​​patterns​​have​​remained​​stable​​over​​many​​years.​​In​​my​​experience,​ ​the​​ability​​to​​carry​​over​​unspent​​funding​​encourages​​careful​​planning​​and​​responsible​​use​​of​ ​supports.​​Removing​​this​​flexibility​​may​​instead​​create​​a​​“use​​it​​or​​lose​​it”​​pressure​​to​​spend​ ​remaining​​funds​​unnecessarily​​before​​the​​end​​of​​a​​plan​​period.​​It​​may​​also​​increase​​the​​need​ ​for​​unnecessary​​plan​​reviews​​and​​administrative​​processes,​​areas​​where​​I​​think​​the​​NDIA​ ​could​​easily​​make​​savings​​without​​causing​​harm​​to​​participants.​

​Value​​for​​money​​and​​clinical​​effectiveness​

​I​​am​​concerned​​about​​proposed​​changes​​to​​the​​definition​​of​ ​“value​​for​​money”​ ​within​​the​ ​Bill,​​where​​lower-cost​​supports​​may​​be​​favoured​​without​​consideration​​of​​whether​​they​ ​achieve​​the​​same​​outcome.​

​For​​people​​with​​cerebral​​palsy,​​cheaper​​or​​lower-intensity​​supports​​may​​not​​maintain​ ​mobility,​​function,​​or​​independence​​in​​the​​same​​way​​as​​their​​existing​​therapies​​and​​long-term​ ​clinical​​relationships.​​This​​risks​​directing​​people​​with​​disability​​toward​​supports​​that​​may​ ​appear​​cheaper​​on​​paper​​but​​are​​less​​effective​​at​​preventing​​deterioration​​and​​achieving​ ​long-term​​gains,​​resulting​​in​​greater​​health​​costs​​down​​the​​track.​

​Mandatory​​registration​​and​​continuity​​of​​care​

​I​​am​​concerned​​that​​mandatory​​registration​​and​​digital​​payment​​system​​enrolment​​may​ ​unintentionally​​discourage​​experienced​​providers,​​particularly​​smaller​​allied​​health​​providers​ ​like​​those​​I​​rely​​on,​​from​​remaining​​in​​the​​scheme.​

​For​​people​​with​​lifelong​​disability,​​continuity​​of​​care​​and​​clinical​​understanding​​are​ ​extremely​​important.​​My​​unregistered​​providers​​not​​only​​provide​​a​​high​​level​​of​​expertise,​ ​but​​also​​offer​​value​​for​​money​​because​​they​​do​​not​​automatically​​charge​​at​​the​​maximum​

Submission 595

​NDIS​​price​​limit,​​which​​in​​my​​experience​​many​​registered​​providers​​do.​​Mandatory​ ​registration​​may​​actually​​increase​​costs​​rather​​than​​reduce​​them.​

​Losing​​trusted​​providers​​would​​have​​a​​significant​​impact​​on​​people​​who​​rely​​on​​long-term​ ​therapeutic​​relationships​​to​​maintain​​function​​and​​stability.​​For​​example,​​my​​exercise​ ​physiologist​​has​​worked​​with​​me​​over​​many​​years,​​and​​tracks​​my​​gait,​​balance,​​fatigue,​ ​muscle​​tone​​and​​pain​​patterns.​​He​​has​​the​​expertise​​to​​alter​​my​​program​​every​​session​​based​ ​on​​how​​I​​present​​on​​the​​day.​​A​​lower-cost​​alternative,​​such​​as​​a​​support​​worker,​​would​​not​ ​have​​this​​high​​level​​of​​expertise.​​This​​knowledge​​directly​​affects​​safety,​​mobility,​​and​ ​outcomes​​-​​including​​supporting​​my​​capacity​​to​​maintain​​full-time​​work.​

​Decision-making​​and​​individualised​​assessment​

​I​​am​​concerned​​that​​increasing​​automation​​in​​assessment,​​planning,​​and​​compliance​ ​processes​​may​​miss​​the​​nuances​​and​​complexities​​of​​fluctuating​​impairment.​​Cerebral​​palsy​ ​does​​not​​present​​the​​same​​way​​every​​day,​​and​​effective​​support​​cannot​​always​​be​​reduced​​to​ ​standardised​​categories​​or​​automated​​budget​​decisions.​​Consideration​​of​​reports​​from​​allied​ ​health​​professionals​​who​​understand​​cerebral​​palsy​​and​​how​​it​​affects​​me​​as​​an​​individual​​are​ ​essential.​

​Recommendations​

​I​​recommend​​that​​the​​Bill​​be​​amended​​to:​

​●​ ​maintain​​flexibility​​in​​plans,​​including​​the​​ability​​to​​carry​​over​​unspent​​funds​ ​●​ ​ensure​​“reasonable​​and​​necessary”​​supports​​remain​​individually​​assessed​​rather​​than​ ​standardised​ ​●​ ​avoid​​funding​​caps​​or​​category-wide​​reductions​​that​​do​​not​​reflect​​individual​​need​ ​and​​risk​​harm​ ​●​ ​ensure​​value​​for​​money​​assessment​​considers​​long-term​​clinical​​outcomes,​​not​​just​ ​short-term​​cost​ ​●​ ​protect​​continuity​​of​​care​​by​​supporting​​long-term​​provider​​relationships​​and​​avoid​ ​unintended​​loss​​of​​experienced​​allied​​health​​professionals​ ​●​ ​ensure​​any​​registration​​requirements​​do​​not​​reduce​​choice,​​access,​​or​​affordability​​of​ ​care.​

​Closing​

​I​​also​​want​​to​​emphasise​​that​​public​​discussion​​around​​“waste”​​and​​“rorting”​​within​​the​​NDIS​ ​is​​creating​​anxiety​​and​​stigma​​for​​the​​many​​genuine​​participants​​who​​rely​​on​​these​​supports.​

​I​​have​​previously​​had​​to​​go​​through​​the​​tribunal​​process​​to​​maintain​​a​​modest​​and​​effective​ ​package​​of​​supports​​that​​were​​previously​​all​​approved​​as​​reasonable​​and​​necessary.​​The​​legal​ ​costs​​incurred​​by​​the​​NDIA​​would​​likely​​have​​far​​exceeded​​the​​value​​of​​the​​supports​​I​​was​ ​seeking​​to​​maintain.​​I​​do​​not​​want​​to​​repeat​​this​​process,​​but​​I​​am​​concerned​​more​​incorrect​ ​decisions​​are​​in​​my​​future​​and​​many​​others​​as​​a​​result​​of​​the​​proposed​​reforms.​ ​The​​NDIS​​has​​been​​essential​​to​​my​​independence,​​health,​​and​​wellbeing.​​I​​urge​​the​ ​Committee​​to​​ensure​​reforms​​strengthen​​the​​scheme​​without​​reducing​​flexibility,​​continuity​ ​of​​care,​​participant​​choice,​​or​​access​​to​​clinically​​appropriate​​supports​​for​​people​​with​ ​permanent​​disability,​​including​​cerebral​​palsy.​

Submission 595

​I​​would​​be​​happy​​to​​speak​​with​​the​​Committee​​about​​my​​concerns.​

​Yours​​sincerely,​

​