Centrelink- Caring for all Australians

There's no place I'd rather be at 8am, than my local Centrelink office, hanging out with the fine-standing citizens of Broadmeadows.





Yes-sir-ee, there is nothing better than standing in a big queue at 8am.

I'm here, because Centrelink screwed up. Yesterday, an envelope arrived in my letterbox, minus the paperwork they were supposed to send. I called them and waited on hold for 34 minutes, before hanging up. It's not the 'hold' music that annoys me the most. It's when the music pauses for a second and for that precious second you think "hooray, I'm about to speak to a real person"......then the recorded lady tells you about Centrelinks online services or some other benign crap.

Centrelink also stuffed up my appeal for Carer Payment. The appeal should have been in Robs name and not mine. I assumed that since we're partners, I could appeal on our behalf. Nope. Even though the appeal was rejected anyway, it wasn't valid to begin with and no one told me. For this reason, I am eligible to claim compensation for 'detriment caused by defective administration' (CDDA). I assure you, I am NOT a vexatious litigant but I'm jacked off and will claim everything I am entitled too.

I tried to explain that to Miss Snooty Pants, behind the desk, who got all hoity-toity with me and told me there was no such thing. Bad move toots.


So here I am, sitting in the waiting room, waiting to meet with 'somebody'. I'm already feeling a tiny bit homicidal. I'm sitting near this TV-





Guess what's on the TV? It's a repetitive DVD about Centrelink services. The voice overs are syrupy, the 'services' they claim to offer are completely bull-shit and it's so loud, there is no escaping it.

There is a jittery, iced up fella pacing the room. I'm the only person not wearing tracksuit pants or a hijab.

53 minutes, I've been waiting now, right next to this sign-





We're close to being evicted and last week our Electricity nearly got disconnected. Centrelink cares for all Australians? Bullshit.

Another Crazy Week for 'Team Max'

It's been a pretty crazy week, for team Max. We had an interview with the Herald Sun and a photoshoot, but we got trumped by Kevin and Jules, so the article is yet to be published. I struggled with the photoshoot, because I was instructed to do an ángry face', the very same cliched expression that I was adament, I wouldn't do. I probably looked something like this-

I also had a post, published on Mia Freedmans webpage http://www.mamamia.com.au/. Since our story was posted, the signatures on our petition jumped from 300ish to 1500+. It's so humbling to know that people support our cause, but sad that so many people have encountered the same problem. Today, I spoke again with a Legal Rep from Social Security Rights Victoria. After reading through our medical reports, she was astounded that we weren't entitled to more assistance.

I realise that even if I am successful in this campaign, it will be too late for us to benefit. But, that's cool, because the bigger issue here is that no one should have to fight so hard. I was so naive when we initially applied for Carer Payments, I thought that my child sustaining permanent damage to half his brain, would qualify us. To date, no one has been able to give me an example of an infant with 'intense needs'.

I want to put all beurocratic issues aside for a moment, because something really exciting happened last week.....MAX CRAWLED FOR THE FIRST TIME! This is a massive achievement for a baby with Hemiplegia. He has been so close, for so long, but he would get into crawling position and forget that he has a right arm. I've had OT's jamming crawling exercises down my throat for months, I finally snapped a few weeks ago and told them to back off. Paradoxically, since we eased up on the crawling business, he was more eager to try it himself. Crawling is pretty uncommon in a 'hemi-baby', the majority commando crawl or bum shuffle. Crawling is fabulous for his arm strength and shoulder stability. Every time he crawls, I am the happiest mumma on earth.

Before I finish this post, I need to say a huge THANK YOU to everyone who has supported our campaign. An extra special thank you to Julie and Belinda for writing lots of emails to politicians and the media. Another huge thank you to Max's godmother Jax, for letting me use her old computer- it is SO much easier than using my iphone. THANK YOU to everyone who has signed and shared our petition http://www.gopetition.com.au/petitions/babies-have-special-needs-too.html

And thank you to Max. You are my universe.

Five Hundred, twenty five thousand, six hundred minutes.

On the 22nd of February, Max will be 11 months old. Only a month away from the big ONE. We're having a party, that my family has organized and I haven't done a thing to help. Not because I'm lazy or disinterested, I just feel sick thinking about it.

Max's birthday party is a celebration of his strength, determination and ability to inspire people. He's an amazing little man and he deserves to be worshipped by everyone who loves him.

But I'm a little bit sad. On the 22nd of March, 2010 I met my little boy and he was perfect in every way (although he looked like a slimy, purple frog). When I held him for the first time, I apologized for comparing him to an amphibian and promised I'd give him the universe. At the time, how could I have known what the next 12 months had in store for us?








I had 10 precious weeks of being a 'normal' mother with a 'normal' son. 10 weeks where I cuddled him all day, despite people telling me I'd regret it later. I've never regretted it. Max hated cuddles after the stroke.

10 weeks where Max and I caught up with friends for coffee. 10 weeks where I indulged in Internet shopping, looking for punk rock baby clothes. In those 10 weeks, the most emotional experience was getting his immunizations.


*please don't berate me for using the word 'normal'. Babies having strokes is not normal




Content




Strategically placed dignity duck





The 2nd of June signaled the end of being a normal mummy. There were no more playdates only medical appointments. I didn't shop for cutsie baby clothes anymore, I shopped online for therapy items. PTs and OTs became the closest friends I had.




have you ever tried finding the perfect sippy cup for a hemiplegic baby? We're currently trialling the sixth one.


I hated going to baby music group, it was impossible not to be jealous of the other babies and their two functioning hands. I hated how they were meeting milestones without hours of therapy. Most of all, I hated their mothers for giving me sympathy eyes.

I hated myself for thinking "this is not the way it was meant to be". It wasn't fair, why him? It's a cruel irony, that the biggest fear I'd previously had, was Max sustaining a brain injury. My biggest fear and it happened when he was only 10 weeks old.

Every dream, I held for Max's future, disintegrated on that day. The dreams became nightmares, full of 'worst case scenarios. I stopped dreaming about his future and started living day to day. It's going to take years before we can truly understand the full extent of his injury.

Max's looming first birthday, is a testament to his courage and strength. He has endured far more pain then an infant ever should. He deserves to be spoilt rotten

For me? It hurts like hell. Almost 12 months ago I held my little boy for the first time and promised I'd protect him forever. I failed.




I love you so much Max

The story of Maxwell Hendrix Valentine

Some days you wake up, blissfully unaware that your life is about to change forever. How could I have known, whilst drinking my morning coffee on June 2nd 2010, that my son would end up on life support later that day? He was 10 weeks old.




This picture was taken 2 days to his stroke


Max was just 'a little bit off' that morning. He was a bit grissly, a bit sleepy and a bit pale. Symptoms that were so darn subtle in a 10 week old and nothing catastrophic enough to indicate that a blood vessel in his brain had burst.

He had been eating well, sleeping well and he had no temperature. But, the niggles in my tummy grew stronger and stronger. Something wasn't right.

I decided to take him to the Children's Hospital. I even packed a big bag of supplies- bottles for him and sandwiches for me, thinking that we'd be sitting around the Emergency Department all day. By the time we arrived at the hospital, his body was limp and he was in respiratory arrest.

Later that day, we were told that he'd suffered a brain hemmorage. His platelets were dangerously low and this had caused the bleed.

The next day, we were told he'd had a massive stroke that had damaged almost half the left side of his brain. On that day, he had seizures, lots of seizures. The seizures were causing his brain to swell dangerously, so he was placed in a medically induced coma. It was important to me that mine was the last voice he heard. So, I took a deep breath, read him his favorite story and sang incy wincy spider. There was a
giant lump in my thoat and tears streaming down my cheeks, but somehow I got through.


We spent 1 week in intensive care












We then spent 5 weeks on the Neuro ward, whist doctors frantically searched for a treatment, that would stop his body from attacking his platelets. In the space of 5 weeks, he had 94 platelet transfusions and the occasional blood transfusion.







He was on a dose of steroids, 32times the normal dose. Have you ever seen a baby with 'roid rage?'. It ain't pretty.

Finally, he started on a treatment that has only been used on a handful of babies worldwide. It was 'experimental' treatment in our case. We had no idea what to expect. Thankfully it worked and he didn't grow a tail.

When we left the hospital, the hardest part of our journey began. We had virtually no supports, to teach us the rehabilitation strategies we desperately needed. The hospitals physiotherapy service, said they'd see him when he was 'more disabled'. Early Childhood Intervention services had a 1-2 year waiting list and older children had priority.

I fought to get him a place in early intervention. I found a private physiotherapist who specializes in children with brain injuries. I worked far too many hours to fund his private physio.

I researched, every opportunity I had and eventually stumbled across a Neuro-Developmental program in the UK called 'Snowdrop for brain injured children. The Snowdrop program has helped him so much. It's sad that nothing similar exists in Australia.

Every day, Max and I do an intense therapy routine, it fills 80% of our day. The days where we haven't done much therapy, he regresses. I cannot put him in Childcare, because they do not have the resources to facilitate the hours of therapy he needs.

The brain damage has resulted in Max having cerebral palsy, vision problems & right sided hemiplegia. His right hand is always in a fist, it takes several massages/stretches throughout the day, to stop it from permanently staying like that. Without the hard work we do with his right arm, it would become non-functional. Every morning, I wake knowing that I am responsible for 99% of his rehabilitation. The pressure often gets too much.




Physio at the park




Did I mention that he LOVES the park?




Physiotherapy at the pool


We have been rejected for Carer Payment twice, because Max doesn't 'tick enough boxes'. 'Boxes' which are applicable to an older child and not an infant. We need to wait until he is 'more disabled' before we become eligible.

So, I'm fighting another battle. I'm urging the Australian Government to review the legislation pertaining to Carer payments. Sadly, ours is not an isolated case. They say that 'all babies need full time care', I say 'some babies need even more.

http://www.gopetition.com/petitions/babies-have-special-needs-too.html

If you copy and paste the link above, into your browser, our petition will load.

No family, should be told to wait until their baby is 'more disabled' before the Government provides assistance.

I love you Max, you inspire me every day with your stubborn determination. You are my hero.







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An update

Babies have Special Needs Too

First of all, THANK YOU to everyone who has signed and shared our 'Babies have Special Needs too' petition. I've posted the link above, if you haven't signed yet, please do!! No one will listen to one crazy mummy on her own. A very special thank you to the people who have gone out of their way, to email politicians or the media and those who've given me lots of political advice (you know who you are).

I'm happy to report that I received an email from the office of Kelvin Thomson MP and he will be making representations of our behalf to Jenny Macklin MP- Federal Minister for Disability Reform. Progress!!

I have emailed Ms Macklin (jmacklin.mp@aph.gov.au) already but I need to be persistent and I need to keep the momentum going. The biggest problem I have with this, is a lack of technology. I only have an iPhone and no finances to obtain a computer anytime soon. All this blogging and emailing is leaving me with a pretty nasty case of RSI. My thumb is cramping and there are shooting pains down my wrist as I slowly type this. For this reason, I'm having trouble following up on the ideas that people are suggesting and I'm not sending half as many emails as I'd like.

I am extremely appreciative of people sending emails on our behalf.
I'm humbled beyond words and I thank everyone, who is helping me get the message out there that babies have special needs too.

Do Politicians only care at election time?

I'm discovering that it's pretty hard to get the attention of a politician. I know they're busy people, but I kinda thought a local MP would have a bit more time, than say, the Prime Minister.

I emailed my letter to Kelvin Thomson, our local MP. I got an automated reply straight back, telling me how busy Mr Thomson is and that he only replied to people is his electorate. Damn! I didn't put my address on the first email. (note: how's about you provide these instructions BEFORE people send you an email, perhaps AFTER we've clicked the button on your webpage that says 'email me'). So, I resent the email.

I've also become friends with Mr Thomson on Facebook. I've written on his wall every day this week but he doesn't acknowledge me. Apparently, his Facebook page only exists as a means of promoting himself and not to communicate with the people who elected him.

I know you're probably thinking, I'm silly to expect a response so quickly and you'd be right. But, I've been fighting this issue since last August and I'm sick of being patient. It takes Centrelink 6 weeks to process every application, it takes doctors several weeks to write supporting reports and the appeal took 3 months because Centrelink stuffed up the paperwork.

I don't know exactly how I'm going to get Mr Thomson's attention but I'll think of something. Here is his email address, if anyone has time to write to him, I'd really appreciate it Kelvin.Thomson.MP@aph.gov.au

Mr Thomson, earlier this week, our power almost got disconnected. You WILL listen, because I'm about to get a whole lot louder.





If you haven't yet signed our petition, please go to the top of this page (but below the header) and click on the link 'Babies have Special Needs Too'.
Thanks to everyone who has helped us so far ;-)


- Posted using BlogPress from my iPhone

Dear Kelvin Thomson MP

Dear Mr Thomson,

I am writing to you, as my local member of Parliament because I am angry. Actually, I'm more than just angry but I'll refrain from using the words that immediately come to mind.

Did you know that kids have strokes? Did you know that babies have strokes too? My son Maxwell had a massive stroke when he was 10 weeks old. He now has brain damage that affects two-thirds of his left hemisphere. He now has cerebral palsy, hemiplegia, sensory processing disorder, thrombocytopenia and acquired attentional deficits.

The current legislation pertaining to Carers Payment does not make any concessions for an infant with special needs. The 'Disability Care Load Assessment' (Child) assesses the functioning of a child not an infant. The stance taken by this Government is that 'all babies require full-time care'.

Mr Thomson, I want to ask you the following:
- do 'all babies' spend a week on life support, in a medically induced coma?

- do 'all babies' then spend a further 5 weeks in hospital, whilst the best Pediatric
Haematologists in Melbourne try to fix their blood?

- do 'all babies' require frequent blood tests?

- do 'all babies' need an intense schedule of Occupational Therapy, Physiotherapy and Neuro-
Developmental therapy, to achieve the tiniest of milestones?

- do 'all babies' spend hours doing therapy with their mother every single day?

DO THEY?

I've fought a lot in the months following Max's stroke. I've fought for my son to receive
therapy, from a grossly under-resourced public health system. I was told that I would have to wait until my baby was 'more disabled before he would be entitled to Physiotherapy.

I had to fight for a place with the Early Childhood Intervention program. I was initially told to wait 1-2 years before he would get a place because older children have priority.

Now, I am fighting to change Section 197B of The Social Security Act, 1991, so parents of infants with special needs don't have to navigate this ridiculous system.

Quite frankly, Mr Thompson, I have better things to do than fight for legislative review but I'm angry. I have just lived through the most stressful year of my life and I've had to fight for every bit of help. Every day, I wake up and feel the pressure of being 100% responsible for my child's prognosis. Do you have any idea how that feels?

My son will grow up knowing that our Government offers more assistance to drug addicts, than babies who never had a chance to know what 'normal' is.

But he'll also grow up knowing that his mother did everything possible to help him reach his full potential.

Mr Thompson, my son is awesome but your system is sh*t.

Regards,
Faith and Max




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This is what it's all about

I just wanted to pause for a moment, and share with you, some recent photos of Max. We've been doing lots of fun stuff lately, so I thought I'd do a picture post for fun. Behold, my son, the clown....




Learning to clap, he thinks it's hilarious!




I think this was actually the precise moment, he realized he could pull himself to stand in the bath. He also thinks this is hilarious.




This is what Max thinks of banks and their interest rates.




Apparently, this is how we watch 'In The Night Garden'.




Crawling practice in his sleep. He literally 'sleep crawls' and eventually wakes up cranky and confused.




Max's first trombone lesson.




Hangin' out with his best bud, it's another baby Max!




Max loved playing in big Max's swing!




Picking flowers with his Nana (quote "this is Nana's favorite flower.......and there goes Nana's favorite flower.....don't eat Nana's flower...")




Playing on the swings at the park




Sitting in the tunnel, I suspect he's eating something....goodness knows what!




Take my eyes off him for 2 seconds, to take a photo and he finds a stick to eat.




Because baby feet are cute.




Helping mummy at the supermarket




God I love you Max xxx

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Babies have Special Needs Too

Babies have Special Needs Too


The link I've posted above will take you to our online petition. I am campaigning for the Australian Government to review current legislation excluding parents caring for disabled infants, from receiving Carer Payment.

They say "all babies require full-time care" but some babies require even more.

Please help me to make some noise and share this post on Facebook, Twitter and anywhere else you can think of.

Thank you

Make some noise

To make people stand up and listen, I need to make some noise. I suspect though, that since changing legislation is kind of a big thing, I will need to make a a lot of noise. The Government needs to know that people care. One angry mum can't do it alone.

I am contacting my local member of Parliament. Someone gave me the awesome idea to harass the oppositional parties and key independents as well. I've contacted various media outlets and hoping they pick this up.

Some have suggested an online petition, so I am looking into this. I've contacted organizations that drive policy changes and social reform.

Yesterdays post (http://maxsstory-faith.blogspot.com.au/2012/02/dear-parliament-babies-have-special.html?spref=fb) has been viewed over 700 times, in less than one day. That's more than any other post I've ever written.

I'm not sure exactly what the next step is. I'll hopefully have some leads by the end of the week.

In the meantime, I am asking for YOUR help to make some noise. Maybe you know people in the media you could contact, maybe you don't and you could contact them anyway. Maybe you have connections in social reform or disability advocacy. Maybe you have some pots and pans you could bang out the front of Parliament.....

Please help me tell our Government, that babies have disabilities too. Families shouldn't have to wait for them to become 'more disabled' before they're entitled to Government assistance.

Share this post on facebook, twitter, email and anywhere else that I don't know about. Keep your suggestions coming (my email is faithyv@hotmail.com)

If enough people, make enough noise, we can make a difference.




Did someone say, "bang some pots and pans?"....

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Dear Parliament. Babies have special needs too

I've been thinking lately that I don't have enough things to do or worry about. So, I've decided to embark upon a little bit of disability reform. Just a wee bit of trying to change some legislation, in my spare time.

*apologies for the sarcasm

My first appeal with Centrelink has failed. We are not eligible to receive carers payment for Max. Even though I've now submitted 3 bonus reports from our OT, PT and Neuro-Developmental Therapist.

Centrelink now knows damn well that Max has needs far greater than the 'average' baby. None of that matters because all babies need full time care.

It doesn't matter that Max needs an intense daily therapy routine. The onslaught of medical appointments we need to attend doesn't get taken into consideration either. It isn't important that I can't work more shifts, and who cares about the additional costs of private therapies and therapy equipment? Not the Australian Government.

Why? Because Max is a baby and babies don't have special needs. All babies need full care.

The words 'has shown improvement' indicates that Max mightn't have a permanent impairment. Even if those words are followed by 'however' or 'only because of'. Apparently permanent brain damage mightn't be permanent if you show some improvement. No-sir-ee. Because all babies require full time care.

It's actually become a matter of principal now. Our story is not an isolated case, there are plenty of other families waiting for their babies to exhibit significant massive delays before our Government will help.

The optimum time for rehabilitation following a brain injury is between the ages of 0-3. The optimum time for stroke rehabilitation is in the first 12 months. But all babies require full time care, regardless if almost half their brain is irreversibly damaged.



Just your average, run-of-the mill, baby in a coma pic



There are people all around Australia sitting on their plump rear ends, drinking VB, paid for by the Australian Government. It's easier to get financial assistance for a drug addiction than for a baby with special needs.

I'm not giving up this fight, because the current system is a god damn joke. Onwards to Parliament I'll march (ok, I'll drive but march sounded more dramatic) to try and make a difference in the lives of families of babies with special needs.

My first step is to raise awareness. Can you help me share this post? Facebook, Twitter, Bebo, email & whatever else is out there. If you have any ideas or suggestions that might help this campaign then please drop me an email (faithyv@hotmail.com).

The Australian Government doesn't recognize babies with special needs. But mark my words, they will.





I love you Max xxx