My name is and I am a full time carer for my husband

was in a serious workplace accident resulting in many injuries and disabilities. He has an Acquired Brain Injury, loss of one eye, damaged vertebra in neck and his face was completely crushed on one side where he has since undergone numerous surgeries for metal plates to rebuild his face and eye socket.

The eye surgeries will be ongoing for the rest of his life together with prosthetic eye replacements as he ages.

  mentality is that of a child with short term memory loss. He has also recently overcome kidney cancer and the loss of one kidney.

As you can see, with all his disabilities I heavily rely on the NDIS system and having the appropriate supports to help him try and live a somewhat normal lifestyle.

I have attached a copy of my carer impact statement for more information.

  plan had rolled over in April with funding the same as the previous year. We accepted that as it covered most of his needs.

However, in May, just 4 weeks later I received a call from a planner at the NDIS stating - plan had again been renewed with services cut by 50% approx. and that instead of being over 12 months it was now 5 years. So technically, his plan had been cut to 10% of previous funding. (12 month plan cut in half and then stretched to over 5 years).

This is not acceptable.

The planner also suggested that I organise- supports and manage his funding. Another way to cut his Support Co-ordinator and Plan Managers. I simply will not do this. I do not have the knowledge, the time nor the energy to be a full time carer along with support coordination and managing his funding.

Our support co-ordinator and I have lodged an appeal contesting this decision.

There was no consultation with myself (nominee), - (the participant), his Support co-ordinator, support workers or any of his service providers of what services- did/did not need.

In fact, they used- goals from 6 years ago when he first applied for the NDIS, which has totally changed now.

I do not understand how a planner can just change a participants plan without anyone’s acknowledgement or consent and cut most services completely without any of the proposed changes being approved by parliament.

These changes are drastic and have caused severe anger issues by my husband as he doest not understand why his services have been cut.

We were not made aware of the changes nor were we informed.

To make matters worse, the planner rang me a few days later (after emailing me the new plan information) asking my opinions on the plan. When I expressed my disapproval and concern, the planner hung up on me! This proves that its just numbers and costs and they have no idea of the mental stress of a carer or the wellbeing of the participant.

So much for participant choice and control. It was all done behind his back without any consent.

   social and community supports has been cut to 40% approximately. This is

putting genuine stress on me as a carer now having to take- to more appointments at our own expense which I physically cant do nor able to afford.

I think these cuts are extreme putting vulnerable participants at risk when their carers collapse from over work and mental health problems trying to deal with it all.

More focus needs to be put on fraudulent service providers.
e.g. I have reported one company who fraudulently abused funding by overclaiming invoices to approx. $8000 and he wasn’t the only participant to be rorted, yet this company is still trading.
It’s the scammers like these that need to be cut, not vulnerable people who just want to try and live a somewhat decent life to the best of their ability.

Regards,

Carer Impact Statement

Participant: Primary Carer: Relationship: Wife and Full-Time Carer

Introduction

I am the full-time carer for my husband, , who lives with permanent and life-changing impacts from an Acquired Brain Injury, monocular vision loss, spinal injuries, chronic pain, and multiple ongoing medical conditions. These conditions affect every part of daily functioning and mean he requires constant supervision, emotional support, and physical prompting throughout the day.

Caring for is not just a responsibility — it has become the centre of my entire life. The impact on my emotional wellbeing, physical health, social life, financial stability, and sense of identity as his wife is significant and ongoing.

1. Emotional Impact

Caring for affects me deeply every single day. His Acquired Brain Injury means that his emotions can shift quickly, sometimes without warning. Ordinary conversations can turn into confusion, frustration, or anger, and I constantly find myself monitoring his tone, reactions, and body language, trying to prevent things from escalating.

It feels as though I am living in a constant state of emotional readiness — always preparing for the next misunderstanding, the next moment of distress, the next emotional storm. This takes a heavy toll on me. I love but loving someone is very different from managing every part of their emotional world.

One of the hardest parts is the grief. I grieve for the life we had before his accident — a life where we shared responsibilities, shared decisions, and shared joy. Now, I carry the weight of everything alone. It often feels like I am no longer a wife in the way I once was, but more like an emotional anchor holding everything together.

That shift in our relationship — from wife to full-time carer — is heartbreaking, and it impacts my sense of self every single day.

2. Physical Impact

     mobility issues mean that I must stay close by him at all times. His shuffling

feet, balance issues, and vision impairment mean he is at high risk of bumping into things or injuring himself, and I am always alert to make sure he is safe.

Daily Care Tasks & Routine

Supporting- with personal care is a huge part of my day. He needs prompting - often repeatedly- to complete basic tasks like showering, shaving, brushing his teeth, caring for his eye area, and changing into clean clothes. These reminders are not simple; they can lead to frustration, misunderstandings, or emotional overwhelm for him.

Even toileting requires daily attention.- forgets to lift the seat due to his ABI and vision impairments, and I am often cleaning up multiple times a day. This is one of the many small but emotionally heavy tasks that quietly accumulate over time.

    strict routines also control the structure of our day. His need to finish his

computer games before appointments, or before leaving the house, means that everything must be planned around his comfort and emotional needs - often leaving little room for my own.

4. Cognitive, Behavioural & Communication Impact

  ABI has changed the way he interprets the world. He becomes confused easily,

misreads conversations, and can spiral into frustration or anger when tasks feel overwhelming.

I have become the person who must explain, re-explain, calm, redirect, and manage his emotional responses throughout the entire day. This is mentally draining and often feels like carrying two people’s emotional loads - my own and his.

When-becomes upset because routines change or because he feels misunderstood, it is me who must manage both the practical and emotional consequences. This creates a mental load that never fully turns off.

This is one of the areas that hurts the most.

I cannot leave the house for long periods. becomes anxious, overwhelmed, or confused if I am gone, and I am constantly worried about his safety. Because of this, I cannot simply go out to see friends, visit family, join a community group, or even take time for myself.

Even something as small as a coffee with a friend becomes a major emotional calculation — Is calm today? Will he become distressed? Will he hurt himself? Will I return to an emotional crisis?

More often than not, the answer is: “It’s not worth the risk.”

So, I stay home. And the life I used to have — the friendships, the social connections, the simple freedom to step outside without anxiety — has slowly disappeared.

The isolation is immense. And it is not just isolation as a carer — it is isolation as a wife who feels she has lost the ability to live her own life outside of this caring role.

Financial Impact

ABI significantly affects his judgment, memory, and spending behaviours. He cannot manage finances safely, so I am responsible for every bill, every expense, every grocery trip, every fuel cost, and every medical cost.

Carrying the full financial responsibility — along with the emotional and physical responsibilities — adds another layer of stress that never goes away.

Overall Impact

Caring for affects every moment of my day.

I am responsible for his:

safety
emotional regulation

hygiene and personal care
medication support
household management
finances
behavioural support
transport
medical appointments

I do all of this without any respite, without any support, and without any breaks.

I love- deeply-that has never changed. But the caring role has consumed almost every part of who I am. The marriage we once had has changed completely, and while I still love him, the emotional and physical weight of being both wife and full-time carer is immense.

I am exhausted. I am overwhelmed. And I need help.

Why NDIS Support Is Essential

To continue caring for- safely and sustainably, I urgently need:

regular respite care
in-home support
assistance with daily tasks
support that allows me to safely leave the home
help reducing burnout and maintaining my own health

These supports are essential not only for- wellbeing, but for mine - so that I can continue to care for him with love, patience, and energy.

Conclusion

Caring for- is a 24/7 responsibility that touches every part of my emotional, physical, financial, and social life. I cannot safely leave the house for long periods, cannot maintain friendships, and cannot take time to rest or recover.

I love with all my heart but love alone cannot sustain the level of care he needs. NDIS support is essential to help us both maintain a safe, sustainable, and dignified life — not only as carer and participant, but as husband and wife.

Kind Regards,