Submission to the Senate Inquiry into the
NDIS Amendment Bill / NDIS (Securing the NDIS for Future Generations) Bill
Submitted by: redacted - Mother and full-time carer of an NDIS participant
Introduction
My name is redactedandIamthemotherandfulltimecarerofoayoung daughterwithDownsyndrome(Trisomy21). Myhusbandworksfulftime,andtogetherwearealsoraisingourtwootherchildren. OurdaughterhasbeeninvolvedwiththenDIssinceherbirthinMay2021.ThroughtheneDis,shecurrentlyreceivessupportincludingspeechtherapy, occupationaltherapy,physiotherapy,hydrotherapysupportworkersandasistivetechnology.IwanttobeginbysayingthatiamincrldygratefulforthesupporthenDiShasprovidedourofamily.Thesesupporthavemadeagenuineandmeasurabledifferenceinourdauhtersdevelopment,independencecommunication,socialskillsandovertotalqualityoflife.Theyhavealsohelpedsupportthemealthsandstabilityofoonfamiliasawhole.Atthesame time,navigating then DiS can already be extremely stressful and overwhelmingforeach. TheproposedchangeswithinthisBillcreatesignificantconcernandoncertaintyforeachelikeourswhoalreadyrelyheavyontheses supports every single day. I ask the Committee to consider thereal-life impact these changes may have on participantsandan families ##The Importance of Early an Ongoing Support The therapiesandsupported funded throughthe nDIS are not “extras” for our daughter Theyaresentialsupports that help her build communication skills independence physical strength confidence ansocial connection Without th en DIS we wouldnotbeabletoaffordthese therapiesselves Like many familes weraledbalancingthenfinancialpressuresoraisingchildrenwhile also managingtheadditionalresponsibilitiesthacome with caring fora childwith disability. Thesupporourdaughterreceiveshasimproved: -hercommunicationspeech development
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1448
- her independence and daily functioning
- her ability to engage socially and participate in the community
- her physical development
- our family’s stability and mental wellbeing These supports are helping give her the opportunity to live a fulfilling life and become a valued member of her community.
Concerns About Reductions to Supports and “Reasonable” Changes
One of my biggest concerns is the possibility of reduced funding or stricter interpretations of what is considered ‘reasonable’and necessary’.Families like ours already use funding carefully and responsibly.We rely on every partofthe support packageour daughter receives.Reducing accessto therapies,support workersorcommunity participation would have serious consequencesfor herevelopment andwellbeing.I am particularly concerned about reductionstosocial anda nd communityparticipationsupports.These supportsare incredibly importantf o rhelping childrenwith disabilitybuild confidence, social skillsanda nclusionwithinth e c om m unity.Without these opportunitieschildren risk becoming isolatedandexcludedfrom experiencesmany other childrentakeforgranted.
Functional Capacity Assessments and Reassessments Oneo f them ost stressful parts oft heNDIS processis reassessment periods.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1448
Every reassessment brings anxiety around whether funding will continue, whether supports will be reduced and whether we will need to once again prove how important these supports are through reports and functional assessments.
Functional capacity assessments can also create significant financial costs and emotional strain for families.
As a parent, it is incredibly difficult having to repeatedly document and explain your child’s challenges in detail in order to justify support. It can feel like families are constantly being asked to defend their child’s needs instead of being supported.
Long-term plans for lifelong disabilities would reduce stress, create more stability and allow families to focus on supporting their children rather than constantly preparing paperwork and evidence.
Greater Reliance on Families and Carers I am deeply concerned about increasing expectations being placed on families and unpaid carers.
As a mother and full-time carer, caring responsibilities already impact every part of daily life. Families often sacrifice employment opportunities, financial security, social connection and their own mental health in order to provide care. There needs to be recognition that families cannot simply absorb more responsibilities if supports are reduced. If access to support changes or funding is reduced, the risks for families like ours include:
- burnout
- financial stress
- mental health decline
- loss of routine and stability
- inability to work
- social isolation
- regression in developmental and social skills
- increased pressure on relationships and family wellbeing The NDIS should not rely on families reaching breaking point before adequate support is provided.
Concerns About Shorter Plans and Funding Uncertainty Funding uncertainty creates constant stress for families trying to plan therapy, supports
daily life.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1448
Children With Lifelong Disabilities Need Consistency And Routine.
Frequent re-assessments and short-term plans create instability not only for participants but also therapists, support workers and families trying to maintain continuity of care. Longer-term plans would improve outcomes as they reduce unnecessary assessments which stress out everyone involved including children with permanent disabilities who need stability.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1448
The NDIS has made an enormous positive difference in our daughter’s life and in our family’s ability to support her. I understand the importance of ensuring that the NDIS continues as a means-tested scheme, sustainable into the long term; however we must ensure that it does so without compromising dignity or access.