Submission 949
Proposed Changes to the NDIS Act
To Whom It May Concern,
I am writing as the parent and primary carer of my 22-year-old son, , who lives with Autism
Spectrum Disorder Level 3 (ASD3), Cerebral Palsy
(CP), and a number of additional complexities that significantly affect his daily functioning and independence.
I wish to express my deep concern regarding the proposed changes to the National Disability Insurance Scheme (NDIS), particularly around community participation, capacity-building supports, and the proposed changes to the definition of “permanence” in disability.
For families like ours, the NDIS is not simply about funding services. It is the difference between isolation and participation, dependence and progress, hopelessness and a meaningful future.
At present, receives supports that allow him to participate in the community and work towards supported independent living (SIL), which is one of his stated goals under the NDIS. These supports are having a measurable and positive impact on his life.
Submission 949
Through his current supports, participates in:
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work readiness activities, including collecting recyclable bottles and cans and taking them to recycling centres;
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appointments with physiotherapists, psychologists, doctors, and specialists;
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social and physical activities such as all-abilities golf;
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independent shopping and community access;
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supported opportunities to meet friends and build social confidence.
These supports are not “extras” or optional lifestyle activities. They are essential therapeutic and developmental supports that are actively building ’s capacity and reducing his long-term dependence on others.
Over time, we have seen substantial improvements in:
- emotional regulation;
- confidence and self-esteem;
- daily living skills;
- social engagement;
- physical fitness and weight management;
Submission 949
- willingness to engage outside the home. Most importantly, is now proactively contacting friends and arranging social outings himself. This is something we once feared may never happen due to his severe separation anxiety and social difficulties.
Without these supports, would not simply “maintain less progress.” He would regress.
If community access and capacity-building supports were reduced or removed, we believe the likely consequences would include:
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increased separation anxiety;
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greater social isolation;
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weight gain and reduced physical health;
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increased depression and reduced self-worth;
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more frequent ASD-related meltdowns and emotional dysregulation;
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rejection of any pathway toward independent living;
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significantly increased carer burnout for our family.
The current supports are helping slowly develop the confidence and practical skills needed
Submission 949
for supported independent living. Removing or reducing these supports would undermine years of progress and likely increase long-term reliance on both family carers and more intensive government funded supports in the future.
I am also deeply concerned by the proposed changes relating to the definition of “permanence” under the NDIS.
ASD3 and Cerebral Palsy are lifelong conditions. Yet families like ours are repeatedly required to “prove” that these disabilities still exist and continue to cause significant impairment. The suggestion that participants may need to pursue all “available” treatments before eligibility or support is maintained is deeply troubling.
Many treatments are expensive, inaccessible, geographically unavailable, or simply inappropriate for the individual. The burden this places on families is unfair and exhausting.
There is also an emotional toll in constantly having to justify and re-explain lifelong disabilities to systems that should already recognise their permanent nature.
Submission 949
The NDIS was designed to support people with disability to build capacity, participate in their communities, and live with dignity. In ’s case, the scheme is doing exactly that.
I urge the Government and Parliament to carefully consider the real-life consequences these proposed changes may have on vulnerable Australians and their families.
Reducing early and ongoing capacity-building supports does not create independence. In many cases, it destroys it.
Thank you for considering this submission.
Sincerely,
Parent and carer of NDIS participant