Sometimes I Fall Apart

I received a call from the NDIA (National Disability Insurance Agency) this week. It was about my requested review of their decision to slash Noah’s support budget by over 40%. 

After eight months of waiting, I had just been told the day before, that it’d been denied. Matthew (aka “Bryant” as he called himself on the phone) from the NDIA had said he was rejecting it on the grounds that the 3-4 hours of funded weekly support I was asking for, falls under “parental responsibility”.

Now, someone else at the NDIA was on the phone. Carly said she had seen my communications with Matthew/Bryant and she didn’t know what was going on. She didn’t know who Matthew was (she thought he worked for ME), and she wanted to know why I wanted the extra funding. 

All the paperwork had already been submitted – therapist reports, assessments, my own personal letter describing my situation – but she wanted me to tell her directly. 

I had just come home from dropping off Noah at a centre, where I saw him being isolated, bullied and mocked by some kids, and I was in the middle of typing a complaint about it to the management, because it wasn’t the first time it had happened before my eyes. 

People fail to appreciate the fact that Noah, being non-verbal, can never tell me how his day has been. I don’t know how often he gets ostracised, laughed at, avoided, etc. because he can’t speak up. So it makes me angry.

I was angry when I took the call from Carly. She had all the information in their system but she wanted me to explain why I felt I deserved the 3 hours per week I was asking for.

So I had to tell her again, which I hate to do, because it makes it sound like I don’t appreciate Noah – and those of you who know me know he’s the light of my life.

I told her that he needs 2-on-1 support when we’re out and about – he runs off without notice, sometimes onto the road; he runs into the ocean when we’re at the beach; he punches me in the head and tries to knock the table over when we’re out at a restaurant; he screams in distress when we’re in social situations.

And as he gets bigger and stronger, the punches hurt more, and it’s harder to catch up with him when he slips away.

I told her that I couldn’t go anywhere because he gets destructive; how I was invited to a lunch gathering, a 90-minute round trip away, and had to leave immediately because he tried to knock the food over and destroy the table settings. 

How, as a result of this continued inability to take him out in social settings, I decided to be resourceful, to not accept social isolation, so I invited people over to my apartment on the weekend, and he started screaming so that I had to ask some party guests to take him to the park for awhile, and that he screamed again when he got back, but I just had to smile and pretend everything was under control.

How even at charity-funded events, he needs 2-on-1 support, otherwise I can’t go, and how babysitting for special needs kids costs substantially more than for regular kids, especially on weekends. 

We went on a charity boat ride in the south coast last summer; the boat ride was free, but the bill for the support worker I hired to help with Noah – $388.50.

So we don’t go anywhere.

Matthew/Bryant in his decision, said he considers the fact that Noah attends school to be adequate social participation for him, and adequate respite for me. He ignored the fact that I work full-time hours in my business, and he failed to consider that social life in Australia occurs primarily on weekends.

I told Carly about Noah’s 217 days in hospital where the doctors tried to convince me to let him die, and how that’s stayed with me, ie. that because I chose otherwise, it was on me to put up with my current situation – which matched their decision now, ie. it’s “parental responsibility” because it’s technically my “fault” that I decided to fight for my son’s life. 

Carly said she wasn’t interested in past experiences, she wanted to know our current circumstances. All I was trying to convey was the death-by-a-thousand-cuts that we, as full-time carers, have to deal with. The mental, emotional and financial toll we endure, because there’s no respite. 

I am outraged that our government should boast about the NDIS budget surplus; I’m outraged that they spend the funding on lawyers and tribunals to fight against carers who are under such immense, sustained stress that they are unable to coherently articulate their stories, who lack the experience and the expertise to navigate the legal hurdles and jargons that are thrown at them. 

I’m outraged that they think the money is better spent to pay for people like “Bryant” who even admitted in our first conversation a couple of weeks prior, that he wasn’t entirely sure of the rules but he was leaning towards rejecting my request (which he ultimately did). I’m outraged that their right hand is clueless about what their left hand is doing, so that when Carly called me the next day, she didn’t even know who “Bryant” was, when in fact he was from the same agency.

So I fell apart, and I started hyperventilating. Carly said to leave it with her, she was going to “help me” get the funding I requested, and that she would call me back. 

So, despite the traumatic conversation with Carly, I saw a glimmer of hope.

Then she called me back an hour later. Sorry, it looks like yes, Bryant does work for us, and since he’s already made the decision, there’s nothing she can do.

So I fell apart again.

This is what we, as carers of people with special needs, have to deal with, here in this lucky country.

I HATE being vulnerable, but this had to be told.

I’m not seeking pity, I’m seeking justice & accountability for Noah and for all the other people caught up in the trainwreck that is the NDIS.

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PS. And for those of you who think I’m being a bit rich in asking for the funding, this was what someone who works closely with the NDIS wrote me after the decision –

…we don’t make the final decisions about funding but based on the evidence you provided, previous decisions in similar situations, and my interpretation of the legislation, I can’t understand why the funding has not been approved.

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Update: shortly after I published this story, the media picked up on it and it was covered on Kidspot (which is part of News.com.au). As a result, I received a call within 2 days from the NDIA to advise they had reversed their decision, increased my funding beyond what I requested, and extended Noah’s plan, so that I don’t have to deal with another budget review for 2 years.