Son's micro-enterprise at risk due to funding cuts (Family or carer experience)

Submission 870

My name is    and I am the parent/carer of my 30-year-old son,        , who is a NDIS participant.

Please except my submission to the Community Affairs Legislation Committee as I strongly oppose the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026.

has been receiving NDIS funding since 2018 as a result of his moderate intellectual disability, Autism Level 3 across all domains, Savant Syndrome, severe expressive and receptive language disorder, obsessive compulsive disorder and anxiety mood disorder. His recent functional capacity assessment highlights he is functioning significantly below that of his peers, operating at less than 1% of the general population in adaptive functioning. ’s literacy and numeracy skills are at an early primary school level, with limited ability to independently problem-solve, self-regulate emotions, or generalise learning across environments.

Unfortunately, in April 2025 the Agency reviewed ’s plan and made a decision to dramatically

decrease his funding and consequently,      ’s mother-           , was forced to reduce her working

days as could not be left at home by himself as he is unsafe and unable to care for himself. With the reduced income, we struggled financially as we still have a mortgage and we were then having to spend time assisting with all aspects of his daily life, including assisting him with his micro enterprise. and I were unable to visit our other son interstate or take a break together as a couple. Furthermore, my chosen career as a Nurse Practitioner requires me to complete 30 hours of professional development each year, often interstate. This meant struggled to work as she is the sole carer when I am away.

I am currently transitioning towards retirement, and I have our own health concerns and we are feeling extremely stressed and overwhelmed. We were relieved when the NDIS was introduced in 2013, as we knew there will come a day when we can no longer support , we are now considered as aging carers. We are also caring for other family members. Regrettably, I could only spend limited time with my mother who passed away from cancer during the ART process. My father requires a high level of physical/emotional support, he is wanting to move into a retirement unit and I will be required to assist him with cleaning up the family home and placing it on the market. Consequently, this will place more strain on as she will need to provide the care for our son so I may assist. ’s maternal grandmother has dementia; maternal grandfather receives a level 3 aged care package. Additionally, I am also the enduring power of attorney of my aunt who has reduced capacity. During the ART process I was regularly sleeping over at her home in Woodville SA once a week whilst she underwent ECT under GA as an outpatient for major depression. Currently, I am now busy making arrangements to pack up and sell her retirement property in order to pay for a

nursing home placement.       ’s brother,          34, is single, and has temporal lobe epilepsy and

pancreatic insufficiency syndrome and he is a non-NDIS participant. We had limited capacity to support him whilst we provided with 24/7 care.

At the end of 2025, during the ART process, the Agency decided that increasing ’s funding by 200 per cent was reasonable and necessary and was indeed in accordance with the legislation/Act. Both

Submission 870

the Agency and the NDIS appointed lawyer required no new evidence to come to this decision. is currently funded for the following:

· Improved Daily Living, CB- assessments from therapists and training for supports

· Assistance with daily life to support him with self-care activities, cooking/cleaning

·     Assistance with social, economic and community participation-     has his own micro-

enterprise and he requires assistance accessing the community safely in order to maintain his business

·     Exploration and Design to explore living options,     requires 24/7

· Behaviour Support funding to address his behaviours of concern

· 28 days of 24/07 1:1 funding for STR

also obtained a report via FOI from the NDIS technical and advisory team that stated required substantially more funding than he had received in April, 2025- including CORE so he may access the community 1:1 to continue his micro-enterprise. I am extremely worried that if the bill is passed and the minister can reduce participants’ funding at any time during a plan- without

consultation,     could have his funding slashed unexpectedly and      would then have to leave

the workforce immediately! We are unable to say if would have any STR remaining in his plan and we also may be forced to admit to hospital as a social admission. Furthermore, we have signed service agreements and we are required to give our ‘registered’ providers two weeks’ notice. This bill change will potentially leave participants and their families thousands of dollars out of pocket as we will be then required to pay the invoices for up to two weeks if the funding is no longer in a plan!

I am extremely concerned if the proposed change of reducing funding for Social and Community

Participation is passed      will once again have his funding slashed and         will be forced to

reduce her working days. I am currently feeling extremely stressed regarding the proposed changes,

I am very worried about how      will cope without his micro-enterprise, knowing        , he will be

extremely difficult to live with and we will have to spend all of our own time assisting him. We/ has chosen to utilise mainstreamed services all of his life and he will refuse to attend Day Options Programs/STR with other participants. and I have discussed this possibility and have decided we will be regrettably surrendering him to full time care.

Submission 870

has dreams that ordinary people take for granted; if he does not have the appropriate funding to support him, many of his dreams will vanish. ’s ability to hold a job/change job, his ability to better himself, his ability to engage in the community and, his ability to live a life of his choosing will not be fulfilled.

We do agree the NDIS requires substantial changes; however, we also feel that cutting funding to the participants should be the last resort. I am desperate for the Australian Labour Party to reconsider the proposed, ‘securing the NDIS for Future Generations Bill’.