At the time, watching my three year old son on life-support in Intensive Care, and being told he would probably die, I thought it was the hardest thing I would ever go through. Joel was left with a profound disability, after sustaining a brain injury when medical treatment for gastroenteritis went wrong.

Little Joel before his medical accident.

But even after that, with 15 years as a single parent of three children and 30 years of experience as a Registered Nurse, the hardest was yet to come.

Handing over the care of my 18 year old son, Joel, to Disability Services Queensland (DSQ), after years of fighting for adequate support - that was the most painful thing I have ever had to do. There is nothing that compares to that experience and pain. The nightmares for the five years after relinquishing his care were only made worse by the lack of any level of understanding from DSQ.

At three and a half, Joel had been a very bright child, with a steely determination and cheery personality. Although much of his brightness is gone following the brain injury that almost took his life, thankfully his determination and quirky sense of humor have persisted.

That determination was vital in Joel’s survival, as he had to relearn to walk, talk and feed himself. The daily challenges that lay ahead of us as a family were unknown at the time, but it soon became clear that Joel had been left with a catastrophic injury and that life would never be the same again: our plans for the future shattered along with Joel’s short life. 

Joel and Corelie recently.

Our plan to move from north Queensland to Toowoomba to be near my parents was more urgent now, with a child with high medical and support needs, so a few months later we moved.

The cracks in a strained relationship with my partner were now chasms, both of us struggling to cope – with an increasingly aggressive four year old with high needs, a two year old struggling in a world he no longer understood, and an eight year old grieving for the loss of her brother, her family and her world.

Joel’s increasing high needs were coupled with complex health problems. My partner and I no longer communicated, and the relationship soon disintegrated. Along with the daily challenges of coping with all three children, extreme financial pressure with almost no support from my ex-partner further added to our stressful existence.

But we soon discovered that we were a good team and all grew together into a pretty cohesive, though often dysfunctional, family. Susan did well at school, while Kris struggled, having never coped with massive disruption to his world at such a young age.

Despite her age, Susan quickly became my best helper and my ally, as we fought to survive financially and to get through each day. I attempted to work in a casual role to make ends meet and to allow us to be a family. But as the stresses of Joel’s care increased, the need for external help became evident.

While support staff in the home relieved the burden of the physical care, it also added to the stress, as many felt it was their position to have an opinion about how we should do things.

As each year went by, Joel became stronger, his health and behavioural needs more complex, and my own health became worse. Susan and Kris both struggled with a stream of staff.

I began studying Psychology at university to try to understand the best way to manage Joel, as educational experts had no idea, and given that Joel was one of the first people to survive such a catastrophic injury, even the medical profession had very little knowledge on which to draw. 

Education became my escape.

As soon as Susan was old enough, the stress of Joel’s high needs, the impact of the support staff on our family, and my own increasing need for her support led her to move out of home.  Kris struggled and found his own coping strategies – many of which were destructive. By the time Joel was 18, I had reached the point of collapse.

My decision to relinquish his care to DSQ was the hardest and most painful thing I have ever done.  The fight over the years to get aide time in school for Joel and support staff to help at home has now been overtaken by the fight for continuing care for Joel, as he lives as a 24 year old young man in the community. 

After six and a half years, many letters to the minister, endless assessments and reassessments to determine that Joel requires 24 hour care, the fight continues. As a family, we continue. DSQ currently do provide 24 hour care to Joel, but this is not recurrent.

Despite this level of support, I continue to be heavily involved with Joel’s care on a daily basis and provide high levels of emotional and financial support. Although we all bear the scars of our caring role, I think we are all better people because of our experience, but the overall cost is huge.

Susan and Kris still struggle to make sense of their disrupted childhood. I struggle each day to fight for ongoing support for Joel, while trying to find my place in the world. And Joel just keeps on being Joel. He is witty and funny and has a refreshingly honest outlook on life, and he just keeps hoping the Broncos will win.

We all just want to be able to live life like everyone else – but Joel needs help with everything he does. This will never change. As a family, we need to know that he will have that help.

Coralie Graham and her family will appear on SBS’s Insight program tonight at 8.30pm on SBS ONE.

Comments on this post will close at 8pm AEST.

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17 comments

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    • acotrel says:

      05:59am | 04/09/12

      It stands to reason that some benefits might accrue from the NDIS, even though it is a development possibly arising from a fortunately misdirected empathy of politicians looking for votes. It might even be that one of our major political parties really cares about what happens to the little guy with problems ? -  While others flounce around in budgie smugglers trying to find ways to fluff up the feathers of the rich and famous !

    • M says:

      07:48am | 04/09/12

      7.4/10

      Extra points awarded for alluding instead of nameing, otherwise a little average.

    • Cobbler says:

      08:42am | 04/09/12

      Agreed acotrel,

      However, I’m somewhat worried that the answer to everything these days seems to be to have some insurance scheme.

      Insurance is the bane of western society, it’s like reverse gambling except your hedging against losing something you already have.

      Health insurance is an awful system that strips money off people who can’t really afford it and puts it straight into the pockets of shareholders of MBF and other such funds.  The only time a doctor sees any of that money is if you actually get really sick which ironically (and thankfully)  most of us don’t.

      Is the NDIS going to be the same?  Is it going to funnel another 1-2% of our earnings per year straight into the pockets of fund runners?  Surely funneling that money straight into a program (even with beaurocracy, which the inefficiencies of which are mostly beat-ups) would be far more beneficial for stake holders.

    • nihonin says:

      08:52am | 04/09/12

      Wow, when did Kevin start wearing Budgie Smugglers, acotrel?

    • year of the dragon says:

      11:58am | 04/09/12

      Cobbler says:08:42am | 04/09/12

      “Insurance is the bane of western society”

      I know a bloke who had an accident and is now a quadraplegic.

      After getting a massive payout from his TPD policy as well as a monthly payment until he turns 65, I’m betting he’ll disagree with you.

      He’s one of the lucky ones. The author’s child never had the chance to take that level of personal responsibilty.

      The government has a role to care for those citizens that are unable (not unwilling) to care for themselves.

      I sincerely hope that this scheme is implemented in a sustainable and considered way rather than with this government’s typical mismanagement, unintended consequences and poor outcomes for all.

    • Mahhrat says:

      07:36am | 04/09/12

      All the very best to you and your family.

      I hope the NDIS - even if it’s too late for you and Joel - can address some of these issues for future generations.

    • Cynicsed says:

      02:31pm | 04/09/12

      Exactly what I was going to say, Mahrat. I found this an emotional read. So much pain and struggle.

      Best wishes, Coralie.

    • Babylon says:

      07:40am | 04/09/12

      With a $7 Billion dollar blow out already and the whiff that it may not be good enough, like most of the Gillard Government endeavours, this NDIS will be remembered for the incompetent way it was designed and run.

    • bailey says:

      09:09am | 04/09/12

      If you say so babble-on

      You sure you don’t want to make it a $7 trillion dollar blow out? It’s a bigger number and will have heaps more impact to the casual observer.

      Can you have a look and tell us if Whyalla has been wiped off the map yet?

    • Chris L says:

      10:02am | 04/09/12

      In that case, Babylon, we need the other parties to step up and help work out to make the solution work rather than just shoot it down.

    • Garbage man says:

      11:46am | 04/09/12

      The answer to everything is to “hand over” to Abbott. He will be the immaculate conception of a PM. Just like Bailieu and Newman. F@&$ they’re good! I can’t believe how great they are.

    • the cynic says:

      03:08pm | 04/09/12

      Well said Mack .Thought the very same when I read the article myself. It is people like Coralie and Joel mentioned here who are bearing the brunt of the guilt ridden brigades crusade in this utter waste of resources .  “Australians are equal but some are more equal than others” (of course unless you happen to be black or have had some black in you or has been on you).

    • jimbo says:

      09:57am | 04/09/12

      @aco.  Just can’t help yourself can you?.  You are so much like your idol with your lack of common decency.  You can turn a story of a womans hardship into a shot at Howard.  Mate you stink.

    • baddog says:

      10:21am | 04/09/12

      Coralie thank you for sharing. I had tears in my eyes reading your story, this could happen to anyone. The struggles you and your family have gone through are impossible for me to understand. I also firmly believe you did what was best for you and your family by relinquishing care, no one could ever say otherwise. I hope this story sheds light on the need for the NDIS, and Campbell Newman’s utterly reprehensive reasoning why QLD cannot help families such as this one. We are a first-world nation that surveyed the GFC like no other. Come on, let’s act like a community, stop the BS and fund the NDIS.

    • Shrill Liberal Monkey says:

      12:05pm | 04/09/12

      If keep carrying on like shrill Liberal monkeys over everything Labor does and screech “disaster” it becomes self fulfilling. It’s a great strategy of bullshit. No matter how the project goes we screech and it becomes so!

    • Mik says:

      01:44pm | 04/09/12

      It has been said having children is like watching your heart running around on two legs - when that heart is broken in some way, even if they have grown up, it brings whole families to their knees.  It makes sense that good disability support gives us a more functional society.

 

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