Special needs parenting

(Not) Just a Mother

Every night before bed, Ella and I settle down to read her bedtime story, only now, we do it a little different. Her talker propped up in front, I use it to tell the story, and Ella and I talk about the animals, the colours, we talk of how the story is making us feel.
This is at the suggestion of our speech pathologist. You see, with AAC it’s not a matter of just giving her a talker, its about modelling, and practicing how to use it. I make a point of doing this for a few solid blocks of time a day – modelling, and talking with Ella using her talker. This idea came from googling ideas of how to implement this into day to day living.

The reason I’m sharing this, is because of NDIS.
NDIS is Australia’s national disability insurance scheme. A scheme which is supposed to help people like Ella get the funding and supports they need – Stick with me, I do have a point…
At the moment I’m fighting with NDIS to get more funding for Ella. Ella has been an NDIS participant for 2 years, with the plans reviewed yearly. Up until now, I could not fault them, I raved about them, about how lucky we were to get this help to pay for therapies, incontinence aids and the other added costs of having a disability.

That is… until the most recent plan. They have cut Ella’s funding IN HALF, even though her needs are only increasing as she gets older. No warning, no gradual cut back. Just cut.
HALF the therapies, HALF the amount of incontinence aids. HALF…
Their reasoning? what I’m asking for
“isn’t reasonable or necessary”
In what world are incontinence aids for an incontinent person ‘Not Necessary?’
In who’s mind is speech pathology for a non verbal person ‘not reasonable?’
It has now escalated to the Administrative Appeals Tribunal, and the process is taking months.
Like many before me have said, the system is broken.

During the process I’ve had to write a carers impact statement. Now this isn’t an easy thing to write but it’s really made me reflect on what I do as not just a mum, but as Ella’s carer. And more than that, her advocate.

In my statement I had to lay out how many hours per week I spend on her care, that is outside the realms of care of a ‘typical’ 10 year old. My conservative estimate came to 65 hours per week.
Now there’s the normal things you would expect, time spent changing nappies, feeding, washing, brushing teeth, brushing hair, cleaning up spills.

But on top of that are the hats.
I wear the hat of a nurse, while I’m administering medications, or using her appendicostomy to flush out her bowels once a day.
The hat of an accountant, when I’m budgeting the measly amount of funding the NDIS gives for therapies or incontinence aids. I constantly weighing up, now this month do we get more nappies, or an extra session of occupational therapy? Can we afford to send her to camp, or should I save it in case she needs more physio? How do I make this most of this funding, and make sure it lasts the entire year.
I painstakingly catalogue every invoice into a separate email address, I have a separate bank account, and I save into a spreadsheet what I’ve spent and how in case of audit.

I wear the hats of a speech pathologist, occupational therapist and physio therapist, because while she has appointments with actual therapists, it doesn’t stop when the session is over. We need to practice every day. I dedicate time each day to using her talker, practice her balance, or use the skills we’re concentrating on in occupational therapy, every. single. day.
I spend time researching how to help her, what techniques to use. I spend time looking up ways to help her eat, use the toilet, communicate, help her balance, always following up with her therapists or specialists.
And going deeper than that, I’M NOT QUALIFIED IN ANY OF THESE THINGS!! So I need help.
Which brings me back to my story from the beginning. Yes I’m spending that time, that 65 odd hours a week, with Ella doing all these things. And I do them GLADLY, But I need to be able to access the therapists and specialists so I know what to do, so I know how best to support Ella, to help her achieve her goals. Without the therapies, the therapists and the funding to access them, I would have zero clue where to start.

So there I was on Sunday, spending 4 bloody hours, preparing my statement and uploading reports to NDIS for this stupid tribunal, all I could think was, this time could have been much better spent just being a parent to my kids. The fact that I have to go through this process, prove that Ella is ‘disabled enough’ to receive support that will benefit her and help her achieve her goals is both dehumanising for her, and stressful for me.

While I’m grateful that something like the NDIS exists, I thinks it’s important to remember, The NDIS have been in Ella’s life for less than 3 years, and have met Ella a grand total of ONCE in all that time, and they think they know what’s ‘reasonable and necessary?’
I have been Ella’s parent, carer and advocate for 10 years. She’s not just a number on a case file to me.
I KNOW what I’m talking about. I KNOW what would benefit her long and short term.
I KNOW what’s ‘reasonable and necessary’ for her care. The absolute least they can do, is listen.

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