Marcella had to fight for her NDIS plan. She worries people without her knowledge are missing out

I wasn't expected to survive my brain injury. 

Surviving my injury wasn't the only battle I faced. I also had to learn the bureaucracy and confusion that is the National Disability Insurance Scheme (NDIS), a scheme supposedly designed to help me.

I was a social worker, living and working in regional Far North Queensland with a speciality in and long work history working with individuals recovering from acquired brain injury (ABI).

One morning in late 2015, I didn't wake up. It was eventually discovered I had developed three large brain abscesses, the cause of them still unknown.

I was helicoptered to Townsville Hospital where I underwent three brain surgeries, died on five separate occasions, but was revived and placed in an induced coma. Somehow, with a less than 10 per cent chance of survival, I woke up.

My husband was told that with the probable amount of brain damage I would be in a vegetative state permanently.

Then the unthinkable happened, and I started talking. A few days later, I was walking with a lot of assistance. I was in the post-traumatic amnesia phase so I have no real memory of any of this.

One minute, I was convinced I was in the middle of Cairns Central shopping centre, then I would ask the treating team about my condition using specific medical terms.

It is safe to say that everyone was gobsmacked.

Two months later, instead of being sent to a rehab unit, I was sent home — despite being a huge falls risk. I was unable to be left alone for any length of time and relied heavily on my husband just to survive.

Climbing the hill to get an NDIS plan

In 2018, I was invited to apply to access the NDIS. We were thrilled at the prospect of getting much needed formal therapies.

I put together a mountain of supporting evidence and lodged my application. It was made abundantly clear by practitioners who knew me and my history that support was vitally needed as I was permanently disabled.

Imagine my surprise when, two months later, I received a call from a man who, admitting that he didn't really know how to interpret an allied health report, told me that I didn't qualify for support.

I sent in even more evidence and was still denied.

I was left feeling traumatised after basically being told I had no real disability.

So the not being able to walk far, the constant fear of falls, the memory loss, the loss of sensation on one side: this was all in my head?

I had all but given up and put it in the too-hard basket. It was too emotionally painful.

Then, after a chance conversation, I found out I could get help with my application from a non-government organisation, something else NDIS keeps very quiet.

With their help, I put my application in for formal review. I felt a renewed sense of purpose, that I had the drive and capacity to fight, and planned on going all the way to the tribunal if I had to.

Three months later, I received a call from the NDIS wanting to speak with my husband. They wanted to hear his perspective before they made their final decision on my application.

I couldn't help but think it would have been more useful to do that in the first place.

A week later, I got another call that I had been accepted. I was stunned, yet fearful that it would ever eventuate. The process of planning was slow but I eventually got my first plan.

They gave me everything I wanted except support coordination. I was speechless. I was still traumatised and fearful they would take it all away.

I couldn't help but ponder how on earth participants who don't know how to navigate these systems are supposed to cope.

I came to the undeniable conclusion that the NDIS is counting on this, counting on participants not accessing their funding to its fullest extent by putting up as many barriers as possible, knowing that most people will just give up because it's too hard.

It all started to make sense to me how that huge NDIS surplus came to be.

I finally got the much needed therapies and equipment needed to make me safer, to live with dignity and as normally as possible.

I'm extremely grateful for the NDIS funding I received and still receive.

I'm better able to manage my balance and memory loss, but there are still many "normal" things I cannot, nor ever will be able to do.

I'm driving again without restrictions, I'm in the process of returning to work part time, and I'm still in social work.

Future funding seems uncertain

Then my first plan review came around. Some of my therapies were denied that had previously been funded, even though these neuro-specific therapies were instrumental in the success of my rehab journey.

For many of us living with an ABI we appear to those who do not know us as able bodied and able minded individuals.

It's an invisible disability we struggle with every day.

Only those who know our stories, how far we've come and how hard it was, can really understand.

As a practitioner who worked in the field and suffered the same fate as her patients, the depth of my respect and appreciation of the enormity the challenges that life throws up at us will never falter.

I can only hope that the aims and values the NDIS was founded on remain steadfast and intact.

If not, a large swathe of our society will be further marginalised and a future post-COVID considerably bleaker.

Source: ABC