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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Noah’s Journey

Here’s a very rough video compilation that I uploaded back when baby Noah first came out of hospital in December 2012, after spending the first 217 days of his life there.

Most of my online shares to date have revolved around our post-hospital life, but that’s only part of the story.  When I’m ready, I’ll tell you about what happened during Noah’s 7+ months in hospital, including my confrontations with the medical staff to keep him alive, and the lead-up to my decision to close my restaurant to take care of him.

Who Is Baby Noah?

The body of this post was written in early 2015 for a media outlet requesting a spiel about baby Noah, then reposted on my main website (www.jackiem.com.au) with the following intro >>

Some of you have followed Noah’s story since Day One but many others don’t know about him (as evidenced by the regularity with which I get asked when I’ll open another restaurant – FYI I quit my restaurant because of his illness).

The following is written in the third person but by me (I like when people ask whether I write my own content because it presupposes that I can actually afford writers).

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Born in May 2012 with Down Syndrome, non-immune hydrops, AVSD and duodenal atresia, Noah spent the first 7 months of his life in NICU (neonatal ICU) and PICU (pediatric ICU) at Sydney’s Westmead Children’s Hospital.

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Against all odds, Noah recovered from a prolonged bout with hydrops fetalis – a rare condition with no fixed cure that according to the doctors was not survivable for Down Syndrome babies.

During his time in the ICU Noah also underwent a lifesaving bowel surgery and two open heart surgeries along with a number of other exploratory procedures.

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Noah’s condition improved gradually and in November 2012, his mom raised the possibility with his doctors, of having him home by Christmas.

Because of his stormy and complex medical history, there were numerous medical teams looking after different aspects of his care.

Confronted with this request from Noah’s mom, all the medical teams rallied together and coordinated their efforts to help Noah meet the milestones required for him to be discharged.

One week before Christmas 2012, Noah was finally considered stable enough and he made it home from Westmead after spending his first 217 days in hospital.

Video of Baby Noah’s Homecoming >>

Today, Noah can often be seen in his portable cot at places where his mom runs her Malaysian food business, winning the hearts of customers and passers-by with his jovial and happy demeanour.

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His mom, Jackie M, has made it her mission to help raise awareness of Down Syndrome and to provide inspiration and moral support to others and in particular to single parents through Noah’s story.

 

Enough Is Enough

On 28 September 2017, two police officers showed up at my weekly Concord Hospital market stall and told me that someone had filed a report about my Down Syndrome child being with me at work.

This was not the first time some anonymous member of the public had lodged a complaint about Noah’s presence at my stall; two years previously, I hit the news when another anonymous campaigner launched a petition to remove him from another market where I had operated for 14 years. I subsequently quit that stall, which leaves me with Concord Hospital Market as the one last remaining weekly event where I earn an income from selling Malaysian food.

At Concord Hospital, around this time last year, a woman came up and yelled at me for “child abuse” and said that she was going to report me to the authorities. I filmed our interaction and ended up being invited on television to talk about it.

Every time I post about this on social media, the average person is perplexed about what the problem is. What’s wrong with a child staying with his mom at work? Why do people get so worked up about it? On what basis would they be lodging their complaint? Some people probably assume I’m doing something wrong to get this kind of attention.

In fact when the story came out on the front page of The Daily Mail 2 years ago, some of the commenters suggested this was a publicity stunt by me looking for my 15 minutes of fame. Others are indignant that I would think I’m entitled to bring my kid to work when they don’t have that privilege (this one always stumps me because it’s so obvious – the difference between my situation and theirs is that I’m my own boss).

The fact is, efforts to thwart my integration of my child with my business have been taking place in more subtle forms since way before these incidents. I understand from my fellow stallholders that people gripe to them about Noah’s presence at the markets. They wonder why I’m not home looking after him or why he’s not in childcare. As if he’s better off with strangers for 8 hours than with his mom in an environment he absolutely loves.

Except for the one woman last year who yelled at me, nobody has had the wherewithal to confront me directly.

Throughout all these years, I’ve tried to address this issue with some level of restraint and diplomacy. I’ve tried to assume these people’s motives are pure but misguided. I’ve suggested it’s probably a cultural issue; that some Westerners find the idea of kids in a work environment to be offensive and an example of poor parenting. I’ve figured in their lack of understanding of my child’s disability, they assume he’s not getting the stimulation he needs to thrive.

My frustration stems from these people’s refusal to engage me respectfully to find out my story. They hide behind a wall of anonymity so I never really know the real motivations behind their actions. I decided to provoke a conversation, so I put up this sign the following week at my stall. Halfway through the day, I was told by the market organisers to pull down the sign based on a complaint by someone at the hospital.

That was the straw that broke the camel’s back. I’m done with diplomacy and I’m done with being a sitting duck for malicious anonymous campaigners.

When I quit my other market stall 2 years ago, one person who had experienced disability discrimination in her own life posted on my Facebook page. She begged me to stay and fight. She said that I have a voice and that I need to use it to speak out for those who don’t. She’s right. This website may be about my baby Noah and our story, but I hope it helps other people out there who are or will be facing these kinds of obstacles in their own lives.

Let’s do this.

Sign the petition >> https://www.change.org/p/concord-hospital-support-baby-noah-s-right-to-stay-with-jackie-m-at-the-markets