Being a Carer under NDIS

Until last week I had a face to face support worker meeting over coffee. It was a small respite where I could share the frustrations of dealing with systems, supports and agencies. Then I received an email ...

"My Team Leader has directed that I am not allowed to travel to see Carers. This means that I can not meet with you face to face unless you are willing to drive to ..." the office 30km away.

I was gutted. I allowed myself to sit with this bombshell for a few hours, then mustering a gentle acceptance I replied:

"Dear PrimarySupportWorker

Travelling to your office, whilst fighting for this NDIS, which is making DisabledPensioner more and more symptomatic, is not feasible.

I kinda knew this would come about and we talked about it, if you remember, about supports getting thin on the ground. I am grateful to be given the heads up, which is more than I have been afforded before.

It saddens me, but it is what it is, and it will be whittled away further sometime down the track.

Respite has become a dirty word …

Kind regards ..."

My support worker responded kindly and I knew she was not happy about this change in her ability to provide supports as was her previous mode, but still it sat with me ill that this had come to pass. I knew I had to put forward my feelings at this time, and after allowing a day to stew on the mode of my more fulsome response and to do justice to what I felt was another slight to which Carers, and those in their care, are heir to.

"Dear PrimarySupportWorker

I am done. Over and Over I get promises of support only to have it withdrawn. PHaMs, One Door, Just Better Care, Ability Links, ADHC, Carers ACT, NDIS … it doesn’t matter how much I rely on it, or look forward to it, or struggle to make it, me being me. I will not allow myself to be set up for one more let down.

Please do share this with whomever you would like, as will I, paraphrased and adjusted for anonymity, because there is now one more carer barely making it, who cares for 3 with disabilities and mental health conditions, and who is herself a mental health consumer, who is going without.

I was promised support, via PHaMs, through the NDIS access process for ALL FOUR OF US, but no, only one of us made it, and that was only through my own grit, not because I had support. Two years of this farcical process is going to leave me broken, more broken, but that’s ok, apparently.

ADHC Started me off with their put down that my youngest was “1 IQ point not retarded enough for supports”

There was also Just Better Care that told a disabled pensioner in my care that “if he was going to insist on having a complex medical condition then he should just F#*K off back to Sydney where those sort of things are catered to”

Then we have the whole NDIS decision that Epilepsy is a medical condition and not a disability, so that my disabled pensioner and I, his carer, are locked in a battle with their Senior Lawyer at the Administrative Appeals Tribunal to get some supports.

We also have Ability Links, who in their font of benevolence, have decided that asking for a letter stating when supports were accessed and the type of supports given is tantamount to defrauding the NDIS and have refused to comply with even this basic request.

Let’s not forget Carers ACT who promised, and got a quote for, some home care services, then proceeded to bill me and sent statements and reminders month after month with no service rendered. Even with me informing them that no service was rendered each time a financial document arrived in my in box.
(post note: Carers ACT have now addressed the administrative issue that allowed this to happen)

PHaMs became One Door and I was dropped like a stone. No one contacted me, just neglect. Now this?

It was said that “No one will be worse off under the NDIS. Even if the new disability services might be different; CYP accessing the NDIS should be able FACT to achieve the same or similar outcomes”
https://www.facs.nsw.gov.au/__data/assets/file/0007/436678/Department-of-Family-and-Community_NDIS-Myth-Busters.pdf

This was, is, and ever will be, now that services are being whittled down to inaccessible, a crock, a mockery of all that carers go through and have to put up with in a compassionless, dollar centric farce of a system. Are we not worth a little more consideration?
http://www.carersaustralia.com.au/about-carers/statistics/

I will soldier on, of course I will, it is what carers do … until, of course, they burn out, self-harm or die of despair at their own hand. The statistic will bear out my statements so I am unafraid of sounding too dramatic, or like some hysterical scaremonger. The statistics of our surviving our lot is frightening, but that is ok, probably because we do it out of love, our value is negligible.
https://www.australianageingagenda.com.au/2014/03/05/suicide-risk-among-carers-highlighted/

I hope you can appreciate that I have given this email much thought and refused to reply in a the heat of initial disappointment, and that the inner rage is not directed at you PrimarySupportWorker, but I have long railed against those that would diminish me by abuse or neglect, but neglect is still a wound, a wound that is compounded every time neglect takes place.

I will not be wounded any more. If I have to go it alone, I will, but I can choose to not be neglected. I can choose to not allow the line-up of people and services gasping to neglect myself and my family as they grasp at every holy dollar.

I am done. I can’t begin to iterate my despair or emphasise what that one coffee date a month meant to me, the carnival is over.

It was such a small thing to look forward to … wasn’t it? ..."

So that's it. We navigate the NDIS, succeed or fail. We try to fathom the intricacies of legislation, bureaucratic agenda, wilful misunderstanding of documents and the dogmatic insistence on particular words and phrases, regardless of meaning or intent. We work, we care and we hurt and we neglect our own welfare for the sake of those who trust in our compassion and consideration.

What do we get? Neglect and a constant whittling down of even basic supports. We are not considered by NDIS funding at all, so we are left to shift for ourselves, left with considerably more work because, more often than not, it is we who have to navigate the NDIS for those in our care.

Perhaps we should just line up for a slap in the face periodically ... it might hurt less than this.