NDIS Left Me To Fend For Myself By Cutting Of My Funding

THE NDIS HAS LEFT ME TO FEND FOR MYSELF WITHOUT A VOICE OR EVEN AN AVENUE TO USE IT

My name is Immy. I’m 45 years young and live with cerebral palsy.

I don’t have family around me, I am pretty much alone in this world, but I’ve always strived to live with dignity, independence, and purpose despite my severe physical disability.

I can’t use my arms or legs, as shown in my video. The only part of my body I can control is my right big toe. That one toe allows me to email, communicate, and even program on my computer.

My life is a careful balancing act powered by technology, professional support, and a lot of determination.

For the past five years, I’ve self-managed my NDIS plan. It hasn’t been easy, but I made it work.

I’ve coordinated my care, worked with allied health professionals, kept detailed records, and stayed on top of everything with the help of my support workers. They are my family.

My father has passed, and my mother is elderly. I have no informal supports. I rely entirely on my funded supports to live.

A few months ago, as my physical health declined, I worked with my occupational therapist and physiotherapist to submit updated reports.

These outlined the care hours I now need just to live safely. Basic supports to get out of bed, eat, drink, take medication, stay clean, and survive.

But when my plan review came back, the most essential hours were rejected. The reason? They said the supports didn’t meet the “value for money” requirement under Section 34(1)(c) of the NDIS Act.

I was stunned. These weren’t arbitrary requests they were backed by professionals who know me and understand my needs. Still, the decision stood.

NDIS plan assessors did not even meet me to make a proper assessment, and they never do.

They are not even medical professionals. Yet they overruled the qualified experts who are paid to assess my needs, deciding they knew better and that my life wasn’t “value for money.” Cruel doesn’t even begin to cover it.

Because of that decision not to listen to the medical professionals I did not have enough hours left in my plan to get me to the end of my plan.

A few weeks short (6) at this point the NDIS said we will not be allocating anymore funds and if you need help you can go to the hospital.

This is not a welcomed option, as it exposes me to infections that, due to my compromised immune system, could ultimately be life-threatening unlike the controlled environment of my own home, where such risks are significantly reduced.

I am in this situation because the NDIS denied the hours I requested and obviously needed.

I need 60-70 hours a week of care just for the basics, so with no funding it was by the grace of my lovely support workers who have worked for free to keep me going.

It’s been over 5 weeks. No payments. No backpay. No answers. Over $30,000.00 in essential support hours remain unpaid.

Two of my core workers have had to leave. They simply couldn’t afford to work for free.

Over the past few weeks 4 loyal staff have continued to show up for me, but they must be paid in arrears and NDIS has informed me, a lifetime pensioner who has never been employed, that I must find the thousands of shortfalls to pay them.

A shortfall that has been caused by a series of NDIS failures.

My support workers have had to cut there hours to continue to support me which puts me at serious risk.

Meanwhile, the NDIS is treating this as an overspend accusing me of mismanaging my funds, even though I followed all the professional advice I was given.

How can it be an overspend when the NDIS denied me extra funds that according to the medical professionals were crucial.

After five years of successfully managing every detail of my plan, I’m suddenly treated like a criminal, because I needed more help to get through my day.

Their rejection didn’t just reduce my hours, it stripped away my ability to live safely in my own home.

Their “solution” A hospital bed. At $3,000 per night, or $100,000 for a month, far more expensive than keeping me safely supported at home.

But this isn’t just about money. It’s about being seen, heard, and treated like a human being.

When the NDIS ignored medical advice and made decisions without ever seeing me, they silenced me.

Now, I’m speaking up not just for myself, but for everyone else quietly being left behind.

While the government celebrates a budget surplus, NDIS participants like me are being left to sit in our own faeces.

I’ve launched a GoFundMe to help pay my support workers and survive this immediate crisis.

Every donation helps. Every share counts.

NDIS – IS A FAILING SYSTEM

Despite my extreme physical limitations, I’ve been running my own self-managed business under the NDIS for five years.

When I was first approved for self-management, I was allocated $600,000 over two years, with zero training, no support coordinator, no OT, and no guidance.

I wasn’t even asked if I had a business background or what my education level was.

The only support I was offered by the NDIS at this time was a link to the ATO to register for an ABN, leaving me to figure the rest out myself.

For the next 18 months, I heard nothing from the NDIS.

I found my own staff and built my team slowly. I tracked every dollar, saved every invoice, created rosters, and never gave up, even after being taken advantage of by providers and losing critical funding.

Still, I was never offered education or support.

Now, despite never being given a chance to explain or demonstrate how well I’ve managed my plan, I’m accused of overspending.

I’ve never been offered an opportunity to show that my business is run efficiently and up to code. I have never been asked or given the opportunity to share my insights, and never treated like someone whose experience matters.

Six weeks short of my plan and not my fault they have come back and said you can no longer self manage.

Its like building a business and a business network for 5 years and then turning up for work and someone can decide to change the locks on your door, so your business is no longer yours and there is nothing you can do about it.

No choice. No not inclusion. Just coercive control.

WHAT I NEED.

Financial help to cover essential support as I don’t have the funds to pay my staff.

A chance to self-manage and live with dignity, independence, and purpose because I have already shown that I can.

Why This Matters

This isn’t just about me. It’s about every person with a disability who’s ever been dismissed, unheard, or left behind

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The NDIS claims to empower us but that’s not the reality.

I want to raise my voice. I hope you’ll stand with me.

Thank you for reading, for caring, and for seeing me.

With gratitude,

Immy