An Open Letter to the NDIA

Do you have any idea what you’re doing?  I mean really, any idea?

When Ella first became a participant if NDIS I admit, I thought it was great!  I was the first to say how lucky we are to be able to get funding for Ella to have her therapies.  So what happened?
You slashed her funding in half, with no reason or explanation.  Funding, that I have to say, was rather conservative to begin with, but we made do. I budgeted to the cent, did everything by the book, and still we were penalized. 

Now I understand there are probably a few bad eggs, the ones that screw the system and use the funding in ways they aren’t supposed to.  But those few bad eggs pale in comparison to the entire stinking rotten hen house that’s on your side.

I saw an article the other day, you have spent close to 30 million dollars on law fees.  That’s 30 million dollars fighting against helping people get the support they need.
Did you save much, Was it worth it?  Is the money you saved measured against the human cost – The stress and anxiety you are putting people under, Or does that not factor into your bottom line? Is it reasonable & necessary to stack the fight so far in your favor by hiring big shot lawyers, while disability advocates are stretched to their limits?

Those 2 words, reasonable and necessary.
I saw them so often in your responses to me in my fight to get adequate funding for my daughter.
“Is this reasonable and necessary?” you asked of every single thing.
Here’s an idea.  How about you actually listen to the people that know? Listen to the participants and their advocates, families, therapists, friends.
Who are you to question what a person with a disability finds reasonable and necessary, and who are you to take those away.

I would say intensive speech pathology for a non vocal child is extremely reasonable.  I would say that Physio therapy for a child that has trouble walking, extremely necessary.  I would say the supplies to have regular bowel movements are extremely reasonable and necessary.
You say you want proof of how these supports have helped.  What if that prrof is measured in increments that you don’t understand? And if her improvement is a bit slower we’re supposed to just give up?  I guess you figure well, screw it, if you can’t see enough improvement in a particular time frame, the supports are no longer reasonable and necessary. Is that how that works? Cutting costs because you deem it to be not working, after never having even MET the participant.

I would say the last 4 months of fighting this is not at all reasonable or necessary.  The internal review was an absolute joke.  Not one person spoke to me or My daughter – You know, the participant you’re assessing.  Just an email saying no no no.

Since then escalating it to the AAT has been a nightmare.  It has been stressful, scary and overwhelming.  And I’m one of the lucky ones! I have someone amazing helping me, supporting me and talking me through all your jargon.  Do you know how dehumanizing this whole process is?  Having to ‘prove’ over and over again to complete strangers the intimate and worst parts of our lives?
But that’s what you’re counting on isn’t it?  That people will just give up.  I wonder, how many have. Do you smile when they give up? Does it make you happy knowing the people you’re supposed to help, are now going without support. Going without being able to live full and fulfilling lives because you deemed it ‘unreasonable and unnecessary’.

I have paragraphs of a letter in which your lawyer doesn’t even know what a ‘chait’ is.  The lawyer has assumed that myself, my representative and 4 allied health professionals have ALL misspelled ‘chair’…  really?  A 30 second google search would have informed them what a Chait is. And yet now myself and my representative have to spend the time to explain, once again, why we are requesting the supports, and what the supports are for, to someone that obviously doesn’t care.
Your Lawyers have zero background in disability, zero care and, in my opinion, zero empathy.  How do you all sleep at night, knowing you are actively taking away supports form a community that already has so much stacked against them?

How many people with disabilities have had their lives turned upside down because of your greed, selfishness and dimwittedness?  How many participants are no longer able to flourish because of this? How many don’t have the support that I do to fight you?  How many of your threats work?
I can tell you now, I’m not giving up.  I am my daghters voice, I know how much my daughter and our family can flourish given the supports that she needs.  I know my daughter can lead a fulfilling life with the supports that we are asking for. 

I KNOW what she is capable of, you don’t even know her.

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