Hello,

My name is Alison Cook. I am 33 years old. I manage T12 level Paraplegia, Von Willebrands Disorder, PTSD, an anxiety disorder and depression.

I did make a submission to the original consultation for the NDS back in 2008, (which I have included), but besides me having some good luck being introduced to some very kind and very clever people who donate their time and skills to help me, not much has really changed or been resolved for me. And even though Minister Shorten just announced some new small protection regulations, after such a dark period of financial deregulation, which is a wonderful start, I don't believe enough has changed or been put into place specifically to protect other newly disabled people from becoming victims of unscrupulous financial advisers. (or anyone not acting in the best interests of the person managing disability)

This financial situation was my main and only focus in my original submission because at that time,   it had only just occurred and I was on my own and under a massive amount of stress about it.

But I have found myself at this point of managing my disability for 12 years that I have many more unmet needs than I ever could've possibly imagined I would have when I was injured in 1999.
As was said in the NDIS community forum meeting I recently attended, many Australians wrongly and naively assume, as I did back then, that people that find themselves managing a disability have all their needs met by some Medicare or other federal government program. I know you are aware of this fact along with many Australians managing disability, its also something i've learned too, the hard way.
You know, i was so clueless as to just how alone I had been left by my government after acquiring a disability, that I approached Centrelink several times, (after spending the year being assessed and valuated  by my appointed insurance company spy, and bounced around various insurance company shopped medical specialists), after my 'case settled' asking them for help to access safe and unbiased financial advice. Confused, they told me I was not eligible for their assistance until 2013 and would I please leave.  

So I have attached a copy of my original 2008 NDS submission, which is still relevant, important and that im still fighting , only now with the help of the wonderful people I mentioned above.
But I think I also need to share some other unmet needs issues relating to accessing the specialist medical and rehabilitation care, advice and equipment that is required for me to live an inclusive and full life, as independently as I possibly can.
I am also very lucky to have a great friend that is also my unpaid full-time carer that I feel has many unmet needs as well, both in relation to mine, but also some personally as a carer, and I believe the NDIS will help support him too.

I am having some trouble knowing where to start or how to tell you about it in a way that covers it all and gives you a feel for the impact it has on me, while at the same time keeping as brief as possible for you, as I am fully aware of the terrible fact that I am in the 'person with unmet needs managing disability boat' with a lot of other Australians that I hope have swamped this consultation with their unmet needs experiences.

I think one of the worst things to deal with is the fragmentation of everything I need to access, this problem seems especially apparent maybe because I live in regional Australia.
 Here's one small but important example; having the feeling I should be in a better situation than the one im in, I recently had to self refer myself( with my GP's help) to the SCIOPD at the POW where I was finally prescribed an essential bladder medication I had not been previously prescribed.
 
I had been led to believe that I was accessing all the help I needed at the outpatients clinic at my local regional hospital, obviously I was not. The POW have also promised to put a team together to address many other outstanding needs that they found I have, everything from urology testing, physiotherapy to independent access to my home and help with modifications to my bathroom and kitchen.
I recently had a long wait accessing a new manual wheelchair (replacing one in bad shape that was 10 years old) making many enquiries ,finding quotes at fair prices and finding and having to deal directly with the funding bodies myself. Im happy taking care of anything im able to, but I am not a specialist OT.  
I do have some small fragments working for me, for example; gaining access to fee free help for my PTSD, anxiety and depression from a psychologist twice a month that I accessed convolutley through a mental health nurse at my GP's office.
There are a few more, but I’m hoping by now you've gained some understanding.
 
I believe there needs to be an all inclusive, safe, and unbiased one stop, not only as a first stop for newly disabled people, but also for everyone else with existing conditions. The NDIS model seems to address this huge issue very well, for me, and almost every other person managing a disability, as I am not under the care of any of the new state run traumatic injury schemes.

So,

NDIS = Defragmentation = needs met = more healthy and productive taxpaying people managing disability = an inclusive and progressive Australia and big $aving$ for Australia’s economy. 

ASIC is grossly understaffed and needs help. More investigators = more outstanding taxes and fines paid, better quality business, and, most importantly, more protection for Australians so they don’t have to resort to relying on welfare services.

Also, just quickly, as a nation, we might want to stop giving OAM’s and accolades to greedy sports stars who create misery.
 I wish we could instead give them to some of the wonderful unpaid Aussies out there, professionals or not, working really hard to providing support and advocacy to people who would otherwise have no other recourse. I don’t like to think about where I would be without these amazing people. 

Please understand that I know I have no qualification or education to know what will help or work best for Australia, im just sharing my experiences and how I understand them with you, hoping it might be of some help somehow and I thank you so much for your time.

Sincerely and hopeful,

Alison Cook.