Welcome to Just Juniors

In September of 2008, my 7th daughter Samara was born 9 weeks early. 4 weeks later, she was diagnosed with Down Syndrome. My self-therapy in learning to fully embrace her diagnosis involved designing t-shirts that portrayed Down Syndrome in a positive light. It is from this that my business, designing disability awareness products, has grown.

Sunday, July 14, 2013

The Story the Human Rights Commission Didn't Want to Hear

Well, it has been a long time since I posted anything here. Lets be straight up and call it what it is. Laziness! But it is time I wrote. And it is time this message got out there.

4 weeks ago, after a huge battle, we finally got our Permanent Residency. We had to apply for a Medical Waiver for our Australian born daughter because, well, quite frankly, this country does not want disabled kids. They made us get a whole stack of paper work, which they sent off to the Health Department for an estimate of her lifetime costs. They came up with the magical figure of $640,000. Then contacted us to say that her costs were too high. If they had been $500,000 or less, they would have granted the waiver. We were given the opportunity (interesting wording, like they were being super generous) to appeal this by providing "compelling" reasons why a waiver should still be given on "compassionate" grounds. So we pointed out that as a NZ descendant, she was already entitled to Medicare and Special Schooling. And that all the money they had assigned to her care as an adult, would apply regardless, as she would become an Australian Citizen at 10 anyway. So they granted the visa. It comes with a stipulation that Michael has to keep working at his job for another 2 years.

Sadly the opportunity to even apply for a Medical Waiver has been removed. Anyone else in our situation is unable to qualify. I vowed I would never forget this situation. That I would not forget there were thousands of other Kiwis stuck in this never-never land. And now, I have been given the opportunity to speak up. And I would like to invite allow you to as well, by joining Oz Kiwi on Facebook, and by signing this survey. And check this out - a comparison chart for Kiwis in Aussie vs Aussies in NZ.

I have also started a FB page for Kiwis with Special Needs Kids - Special Little Kiwis in Oz. The aim of this group is to support each other in any way we can, including by having a library database of special needs equipment available for loan. The group is open to anyone who supports our cause.

Last week I found this website where people can share their human rights story, and in the case of children, have them sent to the Children's Commissioner. I sent in Samaras story. But they never published it. In fact there is not one single story on the plight of the New Zealanders living in Australia. Not one. It appears that our Human Rights don't even extend to having a voice in the one place where our stories are begging to be told! In fact, when it comes to Human Rights, can you believe that the Department of Communities (the umbrella that Disability Services comes under - yes, the ones that kicked Samara off for not being a citizen) is changing the legal definition of
discrimination so they can continue to discriminate against Kiwis?!  Seriously?! How can that even be legal for a first world country?!

Anyway, they may not have wanted to publish Samara's story, but I can. So here it is...

Rejected by my Country
By Samara Lamb-Miller (with lots of help from my mummy)

My name is Samara. I am almost a big 5 year old. I don't have many words, and the ones I do have are about fun things like food, and animals and The Wiggles. So I am getting my mummy to write this for me. She's used to fighting for me, so she knows about stuff that I don't, and you probably don't either. I guess it is hard to know everything so people just know about what happens to them and people they know. So I am hoping by getting to know me, you will understand just how hard my life has been. My story starts more than a year before I was born. My mummy and daddy and 5 of my 6 big sisters, came to live in Australia. They are from New Zealand, which is a really cold place I went to a couple of times for a holiday. Anyway, I am the only kid in my family who was Made in Australia. I guess that makes me pretty special, huh? Anyway, I was born 9 weeks early. When I was 4 weeks old, the drs told my mum and dad that I had an extra chromosome. You would think that there being more of me would be a good thing. But there are some people that don't agree. Because, next thing I know, my country doesn't want me. Being born here wasn't enough to make me an Australian. Even though it probably was for you. So instead, my family had to become Permanent Residents. Which is weird. Cos I thought they were since they are residents who live here permanently. I guess people with only 46 chromosomes don't get stuff like that. So, as it turned out, they weren't allowed to get their Visa (which is a piece of paper from the government, not a card to buy stuff with), because my country doesn't want me. They think I will cost them lots. But I don't see how. I won't cause a drunk driving crash. I won't take up space in a prison. I will always be good to others. Isn't that a good thing? I don't understand. I am a nice person. What did I do wrong? Well, lucky for me, my mummy loves me so much, that she decided to fight for me to get my Permanent Residency. And lucky for my mum, there was this thing called a Medical Waiver that she could apply for. Not so lucky was it cost us lots and lots of money, and we had to shift a long long way from home, and from my drs and from my school. It took a long time, but we finally got our Permanent Residency a few weeks ago. And that's good. Cos now I can get therapy which will help me to learn stuff and to be able to do heaps of things myself. It will help me even when I am all grown up! And I can get a special car seat so I don't die in a car crash (those things are way to expensive for mums and dads to buy without help). But I am still sad. And that is because some of my friends didnt get lucky. Their mummy's and daddy's can't get Permanent Residency. Because now, all kids with disabilities, and their families get told no. They can't get a Medical Waiver. Even if they were born here. How can that be fair? Why doesn't this country want to help them? Mum says it is cos they have no rights. But I thought all humans were supposed to have rights. Especially kids. Especially disabled kids. She said Australia has signed stuff like the International Convention on the Rights of the Child that says we should be treated equally. So maybe the people who made the rules don't know that. Cos I wasn't treated equally. And my friends might never get get treated equally. And that makes me really really sad. Please can you do something to help them? Just cos of where they come from, or where their parents come from shouldn't make it ok to not help them. We are all just innocent kids. How can it be ok to make their lives even harder than it already is. Some of them are really sick. Some of them might even die before they are old enough to be called Australian. Since your job is to help kids, please help those who need it most.