Who is to blame for the high abortion rate of disabled children?

 I have not been here for a long long time. To be honest I forgot my login, and had lost the email account associated with this blog! I finally got the email figured out, so here I am. 

So who is to blame for the high abortion rate of disabled children? For those of you in the USA, the overturning of Roe v Wade has meant that the lives of these children is finally being given some value, at least in some states. In the meanwhile, here in good old Australia, the abortion rate for babies with Down Syndrome who have been prenatally given that diagnosis is a staggering 96%! 

But I don’t blame the government. I don’t blame the parents. I will admit to partially blaming the health system who pushes abortion. But who I really blame is the church. 

Since Samara was born, 14 1/2 years ago now 😮, I have lost my faith in Christians, and in Churches in particular. Not in God, although I must admit even this has been a struggle to maintain at times, but in those who are supposed to represent Him. 

I think affluence is part of the problem. See, I went to Fiji just before the pandemic hit. While we were surrounded by luxury out on Denaru, that’s not how the people live. Fiji is still largely a third world country. And apart from the 2 special schools, there is not a lot of help for the disabled. We visited the country’s first village. Had a tour, sat on the hard pews in their church, and spent a lot of time chatting with the ladies who showed us around. As in everywhere we went in Fiji, the people loved Samara and gravitated towards her. Here we are outside the church that most of the village attends. 

Anyway, when we were chatting with our tour guides, they were telling us about a young girl in their village who cannot walk or talk. She does not have a wheelchair even (and if it wasn’t for the pandemic, we would have taken her one by now, but we are not allowed into the country). I asked how her parents manage. And the answer was a simple one. One the west has forgotten. “Oh, the whole village chips in to help out!” Mind blowing right? A village that is largely centred around a Christian Ethos that values ALL family members. And despite the fact we live in a country (that we do love - we chose it after all!) that spends literally hundreds of thousands of dollars a year on Samaras care, therapy and equipment; well, I was jealous. 

Because more important than the money, the therapies and even the equipment, is love. And that is what these people have for one another. 

Imagine if those who claim to be Christian here, those who fill the pews on Sundays to get their spiritual fix, actually started to look outwards into their community. To put love ahead of money or what the disabled can give back to you. 

For those outside Australia, a few years ago, we started receiving support from a newly formed government insurance scheme, the NDIS, or National Disability Insurance Scheme. This scheme is funded by taking an entirely new form of tax specifically to fund this compulsory scheme. Sometimes it is amazing and provides all a person with a disability needs. Other times it causes a lot of heartache, a lot of extra work, and a lot of disappointment. We personally have had a bit of each. Each year we have to submit a bunch of records, recommendations, etc to get a plan for the following 12 months. Sometimes we get a good planner and a good budget. Other times we get a planner who thinks we are asking for them to personally pay, and that budget can be cut by (in our case) 66% over what was deemed necessary the year before. We spent 2 years fighting, and now finally have a good plan again. 

In terms of getting Samara what she needs, this is great news! But it has also been a real eye opener. See, we have been looking for new Support Workers for Samara. Now, don’t get me wrong, a good support worker should be paid a decent wage. However, NDIS set upper limits on what they will pay for a support worker. This is around $62/hour for weekdays. The idea being that an agency needs to charge that amount to cover all their overheads, training, insurance, and actually paying the worker. At this rate, most Support Workers earn under $30/hour. Not a massive wage, but nearly 50% above minimum wage. BUT, many support workers have decided to go out on their own. The pay is better, the rules aren’t quite so strict, which can work well for both parties, and the cost to the client is less, meaning their funds go further. Instead of 5 hours a week at $60, they can get 6 hours at $50 for example. But lately, there has been a massive increase in first time support workers with no training, expecting to walk in off the street and earn $50/hour. Or more. Many of these people don’t want to do the messy stuff - changing soiled continence aids, showering, toileting, dealing with behaviour issues, teaching the client life skills, etc. Oh, no. These people have started hearing through the grapevine that they can get a cushy job taking disabled clients out on field trips, to the shops, etc, and get paid $50/hour for it! 

This aspect of the job is something that people used to volunteer to do. The disabled were not expected to pay $50/hour to have “friends”. Worse, they didn’t completely lose those friends when the money stopped rolling in. Because they had real friends. People who wanted to spend time with them, even if it did take a bit more effort than with their able bodied friends. 

But there is a massive amount of money being paid by the government (via the people), that is able to be used to employ all these fake friends. So what does the church do? NOTHING!! They are happy to hand over the care of the “widows and orphans” (anyone who needs a bit of extra help) to the government. Jesus wouldn’t expect us to get our hands dirty now, would he?

When I was in high school, a friend and I volunteered with kids and young adults with disabilities. We would not have dreamed of expecting payment. It was good for us. It was fun. It gave us a purpose. Our “reward” was that we met some amazing people. People the rest of the world overlooks. 

Now, not even the church helps out. If you have a disabled child, don’t expect the church to help. Chances are you will be not only disappointed, but that you will be hurt, and you will come away disillusioned. Church is the last place I would direct a parent of a disabled child. And with that in mind, should the churches be judging those who don’t think they can handle this life? Maybe instead of shouting at them and holding up posters, the church would do well to be there for these families. Not just occasionally. Not just towards those who hold positions of power in the church. Not just to church members even. But to everyone. In such a way that the wider community would KNOW they would be okay, because somebody cares. 

Confessions of an imperfect mother

- [ ] Confessions of an imperfect mother


28 years into my parenting journey, I have finally realised something. I am not a failure as a mum.
My children are not who I projected they would be. They are not living the life I had mapped out for them. They do not follow my faith. They disagree with me on so many things.
But THAT IS OKAY!
Maybe this is a lesson I am being taught by my youngest daughter. You see, 8 years ago, our little world was rocked by the arrival of a little girl who, at 4 weeks of age, we learned was not going to fit into any preconceived notions I had for her future.
Like most parents of special needs kids, I went through the grief that comes with the loss of the dreams we had for our kids. That realisation that she isn't going to win a Nobel Prize. She won't find a cure for cancer. Heck, she may not even live in her own home, or read a book, or even be fully toilet trained. We just don't know. There are many what ifs still ahead on her journey. And, I still grieve for the things she can't do, and the opportunities she may miss. But, what if, maybe, just maybe, she is exactly who she is meant to be? What if this life is the perfect life for her? What if, on the balance of ups and downs (no pun intended), this is exactly who she is supposed to be, where she is supposed to be, and how she is supposed to be?
And if that is all true for her, is it not true also of my other children?
My completely unfounded dreams for her future were my dreams. Not hers. And when she was 4 weeks old, we were very quickly thrown into a world where those dreams were going to have to be broken and rebuilt. Not into lesser dreams. But into dreams that were in line with her life, and her purpose.
Could it be that this is a lesson I needed in order to parent ALL of my children? Did I miss the point completely in my parenting journey? Were my dreams for my children based on people who never existed?
And how could I have gotten it so wrong, and still come here and claim I am not a failure?
Well, my reasoning may be faulty, and a way of making excuses for my own shortcomings. I don't know. But what I do know, is every decision I made for my children, I made from a place of love. And because of that, I think they are who they are supposed to be. Not little images of me and my dreams. But beautiful, loving, caring, upright citizens, who I am proud to call my daughters.
I didn't imagine having a child who would get pregnant at 15. Yet I could not be more proud of my now 20 year old who is an amazing mum to my 4 year old grandson. She has overcome so much to be where she is today. She works full time, and has even started her own business. She doesn't make excuses, or ask for handouts. She just gets on with the day to day task of raising a beautiful child.
I didn't imagine my girls abandoning their faith. But they haven't abandoned the ideals of that faith. They are all amazingly loving giving young women. The oldest has dedicated her life to feeding children healthy lunches in school. What's not to be proud of about that?
They all have that loving caring nature. They show it in different ways, but they all have the most beautiful hearts. One daughter would lend money to employees at her workplace when the boss failed to make their payments on time. Not to mention all the u paid hours she put in to make things better for her workmates.
They are all adaptable to their situations. Finding ways to make life work, even when things go wrong. They are capable of thinking outside the box and problem solving. They think they learned nothing in their homeschool environment. But I don't think they realise just how much they are capable of doing because they learned how to learn, not just what to learn. And even though they don't see it, I am proud of them for it.
As I lay here contemplating the last 28 years of my life, I realise I may have failed in more ways than I ever could have imagined, but I have succeeded in more ways than I ever imagined too. I failed to make them into little moulds of who I wanted them to be. But I was successful in raising 6 young adults who I am immensely proud of. 6 beautiful young women who are just who they were created to be.

Is the cost of charity too high?

Today I have been talking with a customer of mine. She is one of those parents who knows how to get the equipment her kids needs. She hunts out charities, and applies for various pieces of equipment to give her kids what she could not afford to give them on their own. In that respect, I both admire and envy her. I certainly don't have the time or the energy!
But what is the real cost involved in asking for help? Has anyone considered what the requirements of some charities really mean in the world of disability, acceptance, and full integration into society. Do charities need to rethink some of their practices? Or is it all just a necessary evil? At what point does a charity overstep the mark, for the sake of raising funds?
You see, I am not convinced that all donations made to these charities are particularly untruistic. Some may say, "who cares, 'dirty' money has the same face value as honest money". And there is an element of truth in that. But something still doesn't sit right with me.
As part of her application for funding for some chairs for her children for school, this lady was asked to attend a charity dinner, and to give a speech. She initially agreed. Anything to help her kids, right? Then they said her daughter would have to be there too. At this point she almost pulled out. Her daughter is autistic, and they wanted her to attend a meeting with a large group of people. In the end, they went, and her daughter coped reasonably well. But. And there is always a but....
Why did this family have to put their private lives on display like this? Why did this little girl have to be paraded in front of a bunch of rich old ladies and men, in order to garner their support? Why were these people put on display like some sort of sick circus act, that people had paid to come and see?
There is a verse in the Bible that says when it comes to giving to not let the left hand know what the right hand is doing. In other words, do your giving in secret. Do it with a pure heart. Not for praise or recognition.
People know what Variety does. Why is that not enough? Why do they have to be entertained with a fancy dinner, and a parade of disabled children to coo and aww over? Why do these children need to be put on display? Do they get some sick sort of satisfaction, and pride seeing what they are doing for these poor little handicapped kids? Do they like to be there to show others that they support this cause? Do they like being able to stare in a socially acceptable way?
And should places like Variety be promoting this kind of segregation? Sure, money is hard to come by. But is putting special needs kids on display really the best way to get it?

Does this Rollercoaster ever get easier to ride?

Does it ever get any easier watching your baby go in for surgery? Does the fear ever go away? Do you ever stop wondering if you are doing enough? Or the right thing? Do you feel like everyone around you thinks you should be used to it all by now, and you need to get over it? Do special needs kids get visitors in hospital like regular kids do? Or do we all just do a little dance of excitement when we see another one of the special families we have met up there as well, because they are the only friends we have left these days?
Two and a half weeks ago, Samara had a BARD feeding button surgically implanted. I spent the weeks leading up to surgery second guessing myself. Did she really need it? Was I doing enough to keep her weight and fluid intake up, while not causing aspirations to happen? Not many kids with DS end up with buttons. And the ones that do are usually those with serious heart conditions or leukaemia. Samara has neither. So what was I doing wrong? She wasn't terribly underweight, but her weight has been fluctuating between 18 and 20 kg for almost 2 years now. She will have a healthy patch and gain, then get sick and lose it again. She often ended up in HDU (High Dependency Unit) just for hydration because her aspiration causes fear, which in turn leads to refusal to drink.  So a simple cold can lead to an admission for fluids. Because she is on CPAP the regular wards won't take her, although I am told the new hospital will be different in that respect.
But what if it was the wrong thing to do? Even after a year of contemplating this option, and trying to avoid it, I still have been second guessing myself.
Things went well with the procedure. She needed a night in PICU and some oxygen overnight, but that's part of her being high risk (and why every GA causes me to panic!). Then on Saturday she developed a cough. By evening she had a fever and was breathing rapidly. Thinking this was another pneumonia starting, we went off to hospital. She was admitted and put on oxygen. Her chest X-Ray was clear, so no-one knew why she had such low O2 levels, and all the other symptoms she had.
Sunday morning we set up her feed. But it was pouring out as fast as it was pumping in. She also was screaming in pain. She wouldn't let anyone near her button. It was decided to stop her feeds and just offer oral food and fluid through her drip.
Every time she ate anything with texture (all she would tolerate was custard) she would start screaming and throw it across the room after two spoons of it.
Monday morning the Respiratory team came in and discharged her. But we were still there to see the Gastro team. They came in, and said she needed to see the Surgical team because the BARD was surgically implanted, and was still a fresh wound. The Surgical team told us to go home and make an appointment with the surgeon who did the surgery, because we had it done privately and we were in a public hospital under a public dr. I refused and said that was ludicrous. She was in pain, and wasn't eating or drinking. If anything she would be back within hours due to dehydration! Also, I didn't care whether she had it done privately or public ally. I just wanted it fixed! So they rang the surgeon who ordered a contrast dye and X-ray. This showed that the interior part of the BARD had migrated. It was no longer in the stomach. Because we had only given one feed since it had happened, it was still in the tract formed by the Stoma. If we had given further feeds like they had originally suggested, we likely would have caused further damage and fed her into the cavity around her stomach, which can be fatal.
The surgeon who originally inserted the BARD was working publicly at the hospital yesterday so it was organised to operate on Tuesday. It turns out that the Ehlers Danlos she is not yet diagnosed with (but her sister has been, and I likely will be tomorrow when I see the rheumatologist) means the connective tissues in her stomach were simply not strong enough and fast enough at healing, to hold it in place. They replaced the BARD with a Mic-Key button instead, which can be replaced without a GA if it should happen again.
After the anaesthetic, she woke up in a laryngospasm which caused her oxygen levels to drop dramatically. She then panicked, which made it worse. Was pretty scary for a while there. Thankfully, after some oxygen, steroids and a few hundred rounds of "I can sing a rainbow" things settled back to normal.
We are back home today, and her feeds are going well so far. But the whole experience was horrible. And it has me second guessing myself yet again.
It really is hard work mentally being a special needs parent sometimes! The one thing I wish, was that all my friends from "before" would understand the pressure. The fear. The guilt. That goes along with this journey. I love Samara so much it hurts. Literally. It hurts to see her suffer. It hurts to see her get left out. It hurts to think of the future.
But I am conflicted. Because through it all, I can honestly say she has been the most amazing thing that has ever happened to me. Thing is the wrong word. But it covers every other experience I have ever had. I wouldn't change her for the world. But I would give my life to have her not go through the bad stuff. It just isn't fair!

Wow. That's all I can say. Wow. I am speechless.

I just received this email from our church:

Hi there Carolyn

How are you all! I understand you have had a busy month or so with moving and travel etc. I hope you have all been keeping well with the number of viruses doing the rounds also. 

I just wanted to update you briefly on some changes in Nexus Kids should you be planning to come back to visit Nexus again soon. 

In response to our increased general attendance on a Sunday in Kids Church, and therefore needing to respond to the ministry growth with more leaders and team, we have had to review our policy for the children with additional needs who attend on a Sunday. We have a number of families already who this applies to. I wanted to let you know of our change in policy as it does effect Samara's attendance in Nexus Kids. 

Under these new arrangements the family of the child (with additional needs) will be required to provide a 1 on 1 carer / assistant to be present (for the entire service) with the child attending Nexus Kids. A child deemed to fall into this category is one who: 

• Has additional needs (behavioural, physical, social, health, developmental etc) that require 1 on 1 supervision for their entire time in our program;
• Has needs (behavioural, physical, social, health, developmental etc) that require special care, management skills, training, knowledge and capability outside of those skills and capability that our volunteer team are equipped with.      

The carer to be supplied by the family has to be either a:

• Parent of the child 
• Full time carer of the child 
• Blue Carded adult (supplied by the family)  

The carer would attend to their child only, and work with the Nexus Kids Team to ensure their child is included in the larger groups teaching and activities.   

We want to ensure every child that attends Nexus Kids has a fun and safe experience and we recognise that a supervision strategy and additional needs policy needs to be in place to ensure that can happen. 

I am very happy to chat about it if you would like. 

Kind regards

RM  

I can't even begin to respond to this. I guess God only wants volunteers to be there for those who have an easy life. 

What should the church be doing to reach the disabled?

Ok, it has been so long that I had to reset my password cos frankly I didn't have a clue what it was. But I am once again feeling frustrated, and this is my venting spot. It isn't really all I ever care about. But I am too lazy to write when I have nothing worth saying. And this is something that matters. And matters a lot.

We now live back in the city. Things are a lot different from what they were in a town of 7000. It is easy to get lost in a city of two million people. Easy to be forgotten. Not noticed. Anonymous. Sometimes that's a good thing. Other times, not so much.

But my disillusionment with churchianity has kept me away for a long time. I decided to try a new approach. A big church. A church with a heart for the community. And a place that might have more to offer a struggling teenage daughter. And overall, I must say, I am happy there. They have done what they can to help us in our current situation of having to move house, by firstly paying a packer, and then some meals. They have been very welcoming of Samara, trying to do what the can to make the Sunday school a place she can safely be a part of. They are even talking about making up communication cards for her. Great! So why am I here to vent, if we feel so welcome there?

I will tell you why. Because something is missing. In a church with Sunday school classes of up to 30 children per year level, there are only 2, yes, that's right, 2 children with obvious disabilities. And when I say that, I mean I was told that there was one other child with a disability in an older class. They have been so welcoming of Samara. So what's the problem? Statistically, there should be more people in that church with special needs. Why aren't they there? Where are they? If Christians are the major group fighting for the rights of unborn children, then one should be able to safely assume that their children aren't among the 98% of prenatally diagnosed children with DS who are slaughtered for their "sin" of being just who God made them to be. And one would assume that applies to the other conditions that can be diagnosed before birth too. So really, there should be more people with disabilities in our churches. But there isn't. And that bugs me. A lot. Because there is only one reason that makes any sense. And that is, that the church is not reaching out to them in the communities. And, there must also be an element of people leaving a church because they no longer feel that they fit in.

I have been doing a short course at church on Random Acts of Kindness. Now, this is run during the daytime, so there are a limited number of people who can attend. There are 8 groups being run, each in a different subject. I can't remember the topics off the top of my head, but they are topics such as the gift of prophecy, the lesser known women of the Bible, finding who you are, and your worth in Christ is the major gist of it. And there is a time for that. We need that grounding. BUT with each group having a maximum of (I think) 10 people, do you know how many chose random acts of Kindness? ONE. Me. That's it. Everyone else chose subjects that would in one way or another end up centering on their own value in Christ. Not through works, but by grace through the gifts He has given.

But Jesus always started by doing good things, not just preaching. He praised the humble simple works of others. He lived that life Himself. He hung around the lost, the "least of these". Not the Pharisees and the hoity toity of Jewish society. He very rarely preached. He simply lived. And his life was what gathered the people in. It was His actions that caused them to listen. And listen, they did. From that one Man (granted, he was God, but He lived as a man) the world was completely changed. And yet, for a Man on a mission, he didn't say an awful lot. But he did do a lot.

So why are the "least of these" no longer flocking to our churches? Why are they happier not having any part of these followers of Christ? Anyway, this week I tried to share my post on the Open Letter to the Church. I say tried, because I was stopped. We had an extra three people in our group besides me and the lady running it. I was told she knew where I was going with this, and is obviously had a lot of pent up anger because I felt the church was not meeting my needs. Yes, I do have a lot of pent up anger. But not because my needs are being met. Because those Jesus specifically spoke of - THEIR needs are not being met! But I was crying by this point. And that just "proved" that was the problem. But I was crying, because once again this extremely important topic was brushed aside. These people and their situation was once again out in the too hard basket.

She even went to some of the leaders in the church and told them I was saying the church wasn't meeting our needs, which put them on the defensive because they have gone out of the way to try and accommodate her. But they just would not get what I was saying. They did hit a raw spot by saying I was taking on too much and needed to look after me, and they are right there. But the need doesn't go away if I stop. No, I can't change the face of disability throughout Australia. But you know what? The church could. Not just our church. Every church. Imagine the change! An act of kindness directed towards the disabled community being something that every Christian strived to do. Something that just makes them feel valued in some way. It might be volunteering, or financially helping out, a visit in hospital, or just a kind word. It doesn't have to be any bigger than all the other missions the church runs for single mums, for the homeless, for the elderly. All great causes to be sure. But why is the disabled community not being reached out to? If we are to treat "the least of these" (which in no way means they are the least, but simply that society treats them as the least) as if we are entertaining angels, then quite frankly, being an angel must be a pretty scummy job.

THE STARFISH STORY

One day, a man was walking along the beach, enjoying the morning sun and cool breeze from the ocean.Suddenly, far off in the distance, he saw what looked like someone dancing.  But as he drew closer, the man noticed that it was a little girl picking up starfish from the shore and tossing them back into the ocean.As he approached the girl, he paused for a moment, kind of puzzled, then asked, “Young lady – why are you throwing starfish into the ocean?”And she replied…”Well, the sun is up, and the tide is going out. If I leave these starfish on the beach, the sun will dry them up and they will die.”And the man said “But there are thousands of starfish washed up all along this beach for miles! You can’t possibly make a difference!”The young girl thought for a moment, then slowly leaned over, and carefully picked up another starfish from the sand. And with the starfish in hand, she turned to the man and gently said “You may be right, but it’ll make a difference to this one!”And with that, she reached back and threw the starfish as far as she could back into the ocean.

With my charity www.facebook.com/ArohaAngels I am trying to do my part. That not most peoples calling. And that's ok. It isn't that God wants us all out there doing the same thing. Would kind of defeat the purpose. But each of us is capable of picking up even one starfish and saving it.

Every single child is precious is God’s sight!“For he will deliver the needy who cry out, the afflicted who have no one to help. He will take pity on the weak and the needy and save the needy from death. He will rescue them from oppression and violence, for precious is their blood in his sight.”  Psalm 72: 12-1

There is no excuse. If we are to be as Christ to this world, we have a responsibility to do as He would do. Your part may seem so small as to be insignificant. But no act of kindness is insignificant. Not to the one upon whom the kindness is bestowed.

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.

Beauracracy at it's Finest

Todays post is way off on a tangent from disability issues, but seems to me to be completely in line with the politics behind the immigration issues we are facing.

15 days ago our town was flooded. Again. For the 3rd time in less than 2 years. 2 of those times it broke all previous records. Some people haven't been back in their homes long, and now they are homeless again.

We were evacuated and lost a few things (the worst being our van which isn't insured) but overall we got off very lightly. Our house is a highset (built up on stilts basically). So our living areas were spared. And, we were well looked after while we were out of our house. We had forgotten to grab Samara's oxygen concentrator, so the hospital lent us one. A couple of hours later, we were told that an organisation was paying for us to stay in a motel rather than the evacuation centre due to Samara's health issues. They didn't even care that we are not Australians!!

In the first week post flood, I got to take part in a wonderful group that was set up by a local resident. We baked (well, I didn't - but over a hundred people did), made sandwiches and cooled hundreds of bottles of water. We then organized volunteers to deliver them to every flood affected house in town. Twice. Every day. Morning tea, and lunch. It was an amazing community effort, that meant those cleaning their homes out could take 5 mi utes out of their day to refuel and avoid dehydration in the Queensland heat.

Sounds great, huh? We all thought so. As did the 1000+ people who we fed. But Disaster Management were not convinced. After just 3 days, we were told we needed to stop. Why? We're we breaking health laws? No. We were checked every day for that one. Was the demand gone? No. In fact it was still increasing at that stage as people made their way back to their homes for the first time. Unbelievably, we were told to stop because it was time people got back on their feet and started supporting the local economy by buying their own food! Seriously! Now, we were buying our ingredients locally, so how was us stopping going to help the economy anyway? I can answer that. Flood victims did not have power back on yet. They did not have sanitary kitchens to prepare food in. They did not have the time to cook, even if they did have the means. No, our free labour meant the locals were not wasting their money on fast food and cafe's. Places they would not have been eating under normal circumstances anyway. Thankfully the local Lions Club took us under their wings (do lions have wings? Manes maybe?). Anyway, they let us operate from their premises and under their insurance. We were able to continue feeding people for the rest of the week.

Then, this last week I started concentrating my efforts on helping at the flood donation centre. And can you believe they are being told to close down and not give things away cos it hurts the local economy when all the victims are not having to shop for replacement items. Like, as if half the population of our town had been planning on replacing all their household goods just 2 weeks ago anyway! If people weren't going to be lining up two weeks ago to get new toasters, then they haven't really lost any business have they? What they are losing by us running a donation centre is the opportunity to profit from a disaster.

I would love to know where the officials who decree these things are when local landlords are raising their rents to new tenants to horrific all-time highs, just because there is a shortage of housing....

I love Australia. I love the people. I am glad we moved here. But when it comes to politics, I am honestly baffled and saddened beyond belief.

A Life Worth Living? Apparently Not.

Today I was saddened, sickened and disgusted to read the story of little Amelia. At just under 3 years of age, her doctor at Children's Hospital of Philadelphia has deemed her life as unworthy. Why? Because she has been deemed unfit for a much needed kidney transplant. Not medically unfit, mind you. Intellectually unfit. That's right. Because young Amelia has Wolfhirschhorn Syndrome. A genetic disorder that has left her with an intellectual impairment. Or, as her doctor so lovingly put it "mental retardation".

What gives ANYONE the right to put a value on someone's life? Much less, to exercise their power to bring that life to an end, against her parents wishes, just because they can? Further, this family isn't even asking to go on a donor waiting list, they are lining up to be tested and donate their own kidneys. Not that this should be an issue either. After all, even with the donor lists, what makes one persons life more worthy of being saved than another's?

And, can you believe, that this doctor had the audacity to tell her parents that “I have been warned about you. About how involved you and your famliy are with Amelia.” I beg your pardon? Warned about parental involvement? Now that really got my hackles up! Shouldn't we be more concerned about parents who are NOT involved in their children's care?

Be sure to head over to CHOP's Facebook page and add your voice to the thousands there who are letting them know just what we think! http://www.facebook.com/ChildrensHospitalofPhiladelphia

Then head over to http://www.change.org/petitions/childrens-hospital-of-philadelphia-allow-the-kidney-transplant-amelia-needs-to-survive# and sign the petition to get Amelia the surgery she needs and deserves.

Here is my post from their Facebook page:

I am mentally retarded. Compared to the likes of Einstein, my IQ counts for not a lot. Of course, even Einstein's teacher labelled him as intellectually inferior. I guess if he had needed surgery at CHOP he would have been denied too! Out of curiosity, at what level is someone deemed unworthy? Presumably, my level of "retardation" isn't as pronounced as my daughters (who has Down Syndrome), but, from the evidence I have seen, it is not as pronounced as this doctor's, this social worker's, or this hospital's either. So, I am still left wondering what the magic number is that makes one person's intelligence more worthy than another's.

What is discrimination anyway?

Today THE letter arrived. The one that tells us Samara isn't eligible for disability services because her parents weren't born in Australia. It says that under the Disabilities Act 2006 she is excluded as she is not a citizen or a Permanent Resident.

So I skimmed my way through 325 pages of BORING legislation. I did not find a single clause that mentions her immigration status as exempting her. So I rang Disability Services, and asked them where in the Act does it exclude her. They couldn't tell me. But they did say she isn't being discriminated against because of her disability. That all children of non-Permanent Residency or Citizenship holders are born without citizenship in this country. Therefore it is not discrimination.

I disagreed with her, but had to think about it a bit once I was off the phone to formulate why it was discrimination. These are my thoughts on the matter....(aside from my pet peeve that says that we were in the country legally, we were living here legally, paying the same taxes as everyone else, yet our daughter is not a citizen. I think that stinks no matter who you are!)

Any "normal" child born in Australia to New Zealand parents, who is not a citizen by virtue of birth can still access the following (I am limiting this to the age of 10 when citizenship becomes automatic for these children):
Free state schooling
Free kindergarten
Creche rebates
Free health checks
Free (or subsidised) healthcare
Family Tax Benefit
Large Family Supplement (where applicable)
Educational Tax Rebate.

Any "normal" child born in Australia with full citizenship can access the following:
Free state schooling
Free kindergarten
Creche rebates
Free health checks
Free (or subsidised) healthcare
Family Tax Benefit
Large Family Supplement (where applicable)
Educational Tax Rebate.

Any "disabled" child born in Australia to New Zealand parents, who is not a citizen by virtue of birth can still access the following:
Free state schooling
Free kindergarten
Creche rebates
Free health checks
Free (or subsidised) healthcare
Family Tax Benefit
Large Family Supplement (where applicable)
Educational Tax Rebate.

Any "disabled" child born in Australia with full citizenship can access the following:
Free state schooling
Free kindergarten
Creche rebates
Free health checks
Free (or subsidised) healthcare
Family Tax Benefit
Large Family Supplement (where applicable)
Educational Tax Rebate.
Disability Services (funding and therapy)
Lifeline Funding (for equipment etc to help families with disabled children - charity, but must be enrolled with Disability Services)
Carer Payment
Carer Allowance
Better Start Funding (for a set of prescribed disabilities, which Samara falls into 2 of - provides funding for therapy treatments)
Companion Card (allows one Carer to get into certain places (theme parks etc) for free)
Health Care Card (reduces prescription costs of those with high health needs)
Tax Rebate of $600 per year in addition to all other funding
There are more, but that's what I can think of off the top of my head.

Hmmmmm, I would say, looking at that, that it IS discrimination. "Normal" kids born here without Permanent Residency Visas get the same services as "normal" kids born here with full citizenship.

Disabled kids born here without Permanent Residency Visas get WAY less services than disabled kids born here with full citizenship.

I have been to both the state and federal MP's regarding this. Next I will be going to the media. If I have to, I will go as far as international law.

It is discrimination. And it is wrong!

Samara, and others like her, were born in Australia. They deserve to be treated equally. Only the disabled children are really being disadvantaged by this policy. It is time someone stood up and said NO MORE. We are in the process of getting our Visa (one we have to fight for, as Samara's disability is an automatic no, normally). Hopefully in a few months, this will all be in the past for us.

But we are not the only ones. I will not give up the fight just because it won't directly affect us any more. This is not just about our family. It is not just about Samara. It is about basic human rights that are being denied the children who need them the most.