Not a very sophisticated website - you have to go to the left of the page and scroll along the National News to get to the story about carers and the NDIS which ran on the 10th of August.
Friday, 12 August 2011
Girls on Film
Ok, not entirely happy with some of the language used in this news piece, but isn't she cute!?
Tuesday, 21 June 2011
Stopped Looking
There are those moments when something happens, and suddenly you see an issue with new understanding and clarity. I had one of those last week – and I thought I’d share it with you. To me, it perfectly illustrates how our system is “underfunded, unfair, fragmented, and inefficient, and gives people with a disability little choice” as the Productivity Commission’s Draft Report into Disability Care and Support so succinctly states.
I was inquiring about a particular type of wheelchair, one that comes up to full standing position. This would have some social and therapeutical benefits (don’t worry, I won’t bother you with all the details), so I asked my OT to imagine for a moment that money was not an issue – could she tell me if my daughter would therapeutically benefit from a chair like that.
Her response was practical giving me some pros and cons of such a chair for someone like BooBoo. She explained that she had no knowledge of a suitable support seating system that works in both sitting and standing position. Fair enough.
But then she wrote there may well be something suitable out there nowadays. She wouldn’t know about it, though, because:
“I suppose I have (…) stopped looking at them as Enable won't fund them”.
This hit me square in the chest and left me breathless.
Enable NSW is the government department that manages our state’s disability equipment scheme. It doesn’t have a great reputation amongst most parents I know because many items are not funded, and many expensive items (especially stuff made for people with complex needs, and new, innovative stuff). Most of its funding decisons seem to be based on what their budgets hold rather than what people need.
You may think that’s fair enough. But just know that this programme is chronically under-funded, and funding is NOT based on an assessment of how many people are out there in the community needing things, but on the political goodwill of our elected representatives.
But think about it for a minute. I know a young boy who needed a proper feeding chair, as he would choke and asphyxiate almost every time he was fed (sitting in a car seat). Food would get stuck in his lungs, and he would end up in hospital on a regular bases. A feeding chair, which would hold him in a better position for swallowing was deemed unnecessary! Sure, a feeding chair is expensive. Sure, you can do without. But sure, you will have to pay for the surgery and hospital admissions then. You don’t have to be a maths genius to work out what is cheaper in the long run… But, hospital admissions come from a different budget, so never mind…
Standing is very important for bone growth. We have to monitor BooBoo (and Beaver’s) hips regularly to see that they are not displaced. You see, the spasticity can pull the hips out of their joints, and especially as the child grows, standing is important to let the hip bones grow in the correct position. So there is one major reason for a wheelchair that goes up to standing.
Yes, we have walkers (although not a standing frame – and I’m not exactly dying to add another piece of equipment to our household furniture). But kids need to be taken out of the chair and placed in to the walker, which can be a bit of a job (especially as they get older and heavier). I do this whenever I can, but not nearly enough (lazy me). And at school they are not allowed to put BooBoo in her Hart Walker – it’s bad for the staff’s back, apparently (eh, and mine!?). So BooBoo spends a lot of time in her wheelchair. Surely it makes sense to keep her there and bring her up with one push of a button? Or am I not thinking straight here?
In any case, I have told my OT I want one of those chairs on the list we look at. It may not be for her, but that needs to be a therapeutic decision, not a financial one… If a chair like that benefits her, and will beg, borrow and steal to get the money...
Anyway, back to that line of enlightenment.
My OT (and she is fabulous let’s get that straight here) has stopped looking. Because even if it would benefit her clients, she knows the government wont fund it. And therefore the kids won’t get it (except maybe the rich ones who can buy their own, or the lucky ones who can find a charity that will buy it for them).
This makes me wonder.
What else is there out there for our children that we don’t even know about?
What else is there they could benefit from that even our children’s therapists don’t know about because the government won’t fund it?
Isn’t it a very sad sign when professional curiosity and development) gets killed off by a lack of funding?
We need an urgent reform of our disability services.
We need proper needs-based funding.
We need some long-term thinking.
And most importantly of all, we need the decision making power given back to the people with disability and their families/carers in the case of children.
We may not be able to expect long term thinking from government departments. But we can do that, we can plan and save and work out short-term costs versus long-term benefits. Because we are parents planning our children’s future, not bureaucratic departments balancing budgets.
We know these “costs” are actually investments.
We need an NDIS!
Thursday, 9 June 2011
An email i sent today to the CEO of my service provider
Dear Rob,
On 11 January 2011 I ran Pathways [the intake service] to put BooBoo on the OT wait list as she is out-growing her power chair.
Today (9 June 2011) I rang Pathways again to find out where we are at, and if there is any chance we can progress this issue. After nearly 6 months now, the chair is now on its maximum settings and unfortunately BooBoo is just not responding to my requests to stop growing.
I was told by Maria from Pathways that she could see our application on her computer (thank heavens!), and she will forward it to the committee again to see where BooBoo is at. She told me that she could give me no further information. She could not tell me when this committee meets or if they could progress our request in any way.
I know exactly which power chair I want for BooBoo (the next size up from her current one, simple really). Writing an application to Enable [the government agency that provides disability equipment] should be a fairly straightforward issue – but in reality, I know we need to trial some other chairs to satisfy Enable’s bureaucratic paper-hunger. From experience, that will take some months of careful coordination between BooBoo, her school, her OT and the one and only supplier of her chosen brand of chair (Permobil). Accounting for some forgotten paperwork and intricate details that no doubt will need to be produced, we will be nearing Christmas by the time the application reaches Enable. Once there it will sit on a desk for some more months before it is even looked at, and then filed in the “expensive items” pile, which moves at half the normal speed – and that is impressively slowly as you probably know. At this rate, I fear she will get her P plates before her new powerchair.
I understand you cannot control Enable (such superhuman feat would possibly earn you a Nobel Prize from a number of mothers I know). But surely it is not too much to ask to be able to make an appointment to put a wheelchair application in for a five year old child within a 6 months timeframe!? I’m not even asking for therapy sessions, just one meeting to get the process going.
What am I to do when she outgrows her chair in a few months time? Take away her mobility? Or come and clean your offices to earn enough money to buy one myself?
We have been your clients for nearly ten years now, and I am still as frustrated as ever with the system and the endless waiting to get appointments.
Please Rob, I know you are a busy man with much on your plate.
But can you for once and for all sort out Pathways and the referral/waiting list system please.
Frustratedly Yours,
Heike Fabig
Tuesday, 12 April 2011
Right Royally Pissed Off
I am right royally pissed off! And I just have to write this off my chest. So here goes. It could probably do with some editing, but I have to get it out.
Recently, my friend Sue O'Reilly wrote a guest piece for The Angry Cripple on the ABC Ramp Up site. Ramp Up is a fantastic site full of disability news and opinion, and Sue has written for them before. That should not come as a surprise to anyone. Sue had things to say. She's an excellent writer and therefore says them well.
She wrote about the realities of housing for people with disabilities. She pointed out how our ideological positions have actually resulted in less opportunities and choice for people with disabilities. I totally agree with her article, and I knew she'd cop some criticism for it (as I'm sure she did), that was to be expected. But when it came, it came from an unexpected corner, and in a most unexpected way.
Todd Winther is an astute commentator with whom I have previously agreed (Todd Winther is a PhD candidate in political science and can be found blogging at Thoughts of a Frustrated Visionary). So imagine my surprise when he attacked Sue's position, and in a way I consider totally unfair.
Before he dismisses Sue's comments, he dismisses her personally as only a carer and implies the often heard comment that the disability advocacy field is held hostage by carers. Todd wrote:
"[Sue] claims that funding organisations and governments should pay more attention to those with disabilities. Instantly I saw the latent hypocrisy in this argument. How can someone who does not have a disability suggest this? "
I am just so tired of this cowdung!
I could explain to you why I think this argument is rubbish. Some of it you can find in comments I left (two, as I thought the first one had not come through). Suffice it to say that for a PhD student he really needs to revise is course notes on post-modernism and authenticity of voice. If he follows his own argument to its logical conclusion, he can only speak for angry Anglo young men with a physical disability and no-one else. Could only women argue for the women's right to vote or stand up against domestic violence? Could only slaves denounce slavery? Can white people not be against racism? Do you HAVE to have a disability to see the system needs fixing!?!?
But really, what makes me so angry about all this is that it is so bloody judgemental.
Let's get one thing straight here. I am not a carer. Let me just say that again. I AM NOT A CARER. I do not belong to any carer organisations. I have not even voted for the Carer Alliance - even though they are one political party that speaks for me - because their focus is a bit to carer-focussed for my liking. I shun every organisation with the word carer in it. Why?
I am not a carer.
I am a mother.
If we had a decent disability system, in which my disabled children get the same opportunities and chances as my non-disabled child gets, I will not need to be a carer. If we had a decent disability system, in which my children receive the therapies they need on a timely basis, I would not need to be a carer. If we had a decent disability system and my disabled children would get the equipment they need, I would not need to be a carer. Add equality of access, education, acceptance etc. You get my point.
I am a carer by default only.
When will people with disability get this? Like many parents, I am not in the disability community for my entertainment. Nor am I in it for me - even though I sometimes joke that I'm only in it for the parking. Or does anyone really think those $45 dollars a fortnight of Carers Allowance is such a phenomenal treat? When I advocate for education for kids with disability, when I rally for an NDIS, can you believe that I realise this in not about me? That it is about the people with the disability?
Believe it or not, I do actually know that. But you know what? They happen to be my kids, and if I don't stand up for them, who do you think will? You can have my Carer Allowance, you can have my time, you can have my frustration and my anger. Just give my kids what they deserve, and I will happily shut up and go back to my previous life. I have yet to meet a parent who woudn't give the world to be able to leave all the advocacy, and fighting, and fretting behind and just be a parent.
Don't get me wrong, I know where this resentment comes from, and to a large extend I understand it.
People with disabilities have long fought, and are still fighting, to get heard, to be treated as equal human beings. People with a physical disability in particular are rightfully fed up with being ignored and written off as useless or unable to speak for themselves. Things are especially hard for those who have difficulties with muscle control or speech - they know what they want, they know what they want to say, and just because they have difficulties articulating it, society writes them off. When people with disability are upset about people speaking for them, these are the situations they are referring to. But at the same time, there are those who cannot speak for themselves. When my friend with her 20 year old son with an intellectual disability stands on the barricades to demand appropriate housing for kids like hers, she does so, because firstly, there is no where for him to go except his parents house (and where is the choice in that for a young person) and secondly, because he can not. Sure, he can speak, but does not understand the concept of appropriate housing or would not know how and where to advocate for it. When my young son tells me he does not like school because he's behind the other kids and wants to quit, it is my job as a parent to keep him in school and advocate so he gets the help he need to finish his education (he is only 10, you know).
What actually takes place here is discrimination on the basis of disability. How on earth can it be ok for people with a physical disability to deny the needs of people with an intellectual disability just because they cannot articulate their needs and have them expressed by people who love them but, shock horror, are not disabled. Of course people with disability need to be heard. Of course, nothing about them without them. I would never dare to speak But people with a physical disability are not the only ones that need ti be heard.
One of the comments on the Ramp Up site, written by CARO, puts it beautifully:
"The Angry Cripple (...) said that s/he saw this column as an opportunity for all those fighting for a better deal for pwd to raise issues/concerns/subjects of topical interest in the disability field. AC didn't say "As the name of this column makes crystal clear, I'm only interested in issues affecting people with cp, ms and spinal injuries who use wheelchairs - anyone with an intellectual disability can go whistle Dixie". Nor did s/he say that families of pwd could and should go jump. What do you think parents/carers are fighting for when they advocate for an NDIS? Do you think they think it will mean free facials for the rest of their lives and regular paid holidays somewhere sunny? Or do you think they might be fighting for a better deal for people with disabilities? If so - where's the conflict? Where's the problem."
The other thing is that it is so bloody divisive.
As longs as we continue fighting, we loose. Instead of standing strong as a community, instead of pooling our political power, we squabble with each other. We refuse to see our commonality and focus on where we differ. We don't stop to see what we are actually saying, or asking for, because we are too busy attacking each other. And then we are surprised that the disability community carries so little political clout!? That politicians ignore disability? That our system is broken and there seems little interest in fixing it?
Give me a bloody break!
Can we just cut the crap and get on with the incredibly big job we have ahead of us.
Just stop for a minute, Todd. Stop for a minute and listen to what people are saying, before you judge them on who they are. Like my friend Sue, I am a parent - you would probably call me a carer - and we have seen eye to eye on other issues (like that ghastly add by the CPA) and you are a person with a physical disability. Yet I think you would be surprised how often we would agree - and I think we could make a good team. We might even get a decent disability system together.
Recently, my friend Sue O'Reilly wrote a guest piece for The Angry Cripple on the ABC Ramp Up site. Ramp Up is a fantastic site full of disability news and opinion, and Sue has written for them before. That should not come as a surprise to anyone. Sue had things to say. She's an excellent writer and therefore says them well.
She wrote about the realities of housing for people with disabilities. She pointed out how our ideological positions have actually resulted in less opportunities and choice for people with disabilities. I totally agree with her article, and I knew she'd cop some criticism for it (as I'm sure she did), that was to be expected. But when it came, it came from an unexpected corner, and in a most unexpected way.
Todd Winther is an astute commentator with whom I have previously agreed (Todd Winther is a PhD candidate in political science and can be found blogging at Thoughts of a Frustrated Visionary). So imagine my surprise when he attacked Sue's position, and in a way I consider totally unfair.
Before he dismisses Sue's comments, he dismisses her personally as only a carer and implies the often heard comment that the disability advocacy field is held hostage by carers. Todd wrote:
"[Sue] claims that funding organisations and governments should pay more attention to those with disabilities. Instantly I saw the latent hypocrisy in this argument. How can someone who does not have a disability suggest this? "
I am just so tired of this cowdung!
I could explain to you why I think this argument is rubbish. Some of it you can find in comments I left (two, as I thought the first one had not come through). Suffice it to say that for a PhD student he really needs to revise is course notes on post-modernism and authenticity of voice. If he follows his own argument to its logical conclusion, he can only speak for angry Anglo young men with a physical disability and no-one else. Could only women argue for the women's right to vote or stand up against domestic violence? Could only slaves denounce slavery? Can white people not be against racism? Do you HAVE to have a disability to see the system needs fixing!?!?
But really, what makes me so angry about all this is that it is so bloody judgemental.
Let's get one thing straight here. I am not a carer. Let me just say that again. I AM NOT A CARER. I do not belong to any carer organisations. I have not even voted for the Carer Alliance - even though they are one political party that speaks for me - because their focus is a bit to carer-focussed for my liking. I shun every organisation with the word carer in it. Why?
I am not a carer.
I am a mother.
If we had a decent disability system, in which my disabled children get the same opportunities and chances as my non-disabled child gets, I will not need to be a carer. If we had a decent disability system, in which my children receive the therapies they need on a timely basis, I would not need to be a carer. If we had a decent disability system and my disabled children would get the equipment they need, I would not need to be a carer. Add equality of access, education, acceptance etc. You get my point.
I am a carer by default only.
When will people with disability get this? Like many parents, I am not in the disability community for my entertainment. Nor am I in it for me - even though I sometimes joke that I'm only in it for the parking. Or does anyone really think those $45 dollars a fortnight of Carers Allowance is such a phenomenal treat? When I advocate for education for kids with disability, when I rally for an NDIS, can you believe that I realise this in not about me? That it is about the people with the disability?
Believe it or not, I do actually know that. But you know what? They happen to be my kids, and if I don't stand up for them, who do you think will? You can have my Carer Allowance, you can have my time, you can have my frustration and my anger. Just give my kids what they deserve, and I will happily shut up and go back to my previous life. I have yet to meet a parent who woudn't give the world to be able to leave all the advocacy, and fighting, and fretting behind and just be a parent.
Don't get me wrong, I know where this resentment comes from, and to a large extend I understand it.
People with disabilities have long fought, and are still fighting, to get heard, to be treated as equal human beings. People with a physical disability in particular are rightfully fed up with being ignored and written off as useless or unable to speak for themselves. Things are especially hard for those who have difficulties with muscle control or speech - they know what they want, they know what they want to say, and just because they have difficulties articulating it, society writes them off. When people with disability are upset about people speaking for them, these are the situations they are referring to. But at the same time, there are those who cannot speak for themselves. When my friend with her 20 year old son with an intellectual disability stands on the barricades to demand appropriate housing for kids like hers, she does so, because firstly, there is no where for him to go except his parents house (and where is the choice in that for a young person) and secondly, because he can not. Sure, he can speak, but does not understand the concept of appropriate housing or would not know how and where to advocate for it. When my young son tells me he does not like school because he's behind the other kids and wants to quit, it is my job as a parent to keep him in school and advocate so he gets the help he need to finish his education (he is only 10, you know).
What actually takes place here is discrimination on the basis of disability. How on earth can it be ok for people with a physical disability to deny the needs of people with an intellectual disability just because they cannot articulate their needs and have them expressed by people who love them but, shock horror, are not disabled. Of course people with disability need to be heard. Of course, nothing about them without them. I would never dare to speak But people with a physical disability are not the only ones that need ti be heard.
One of the comments on the Ramp Up site, written by CARO, puts it beautifully:
"The Angry Cripple (...) said that s/he saw this column as an opportunity for all those fighting for a better deal for pwd to raise issues/concerns/subjects of topical interest in the disability field. AC didn't say "As the name of this column makes crystal clear, I'm only interested in issues affecting people with cp, ms and spinal injuries who use wheelchairs - anyone with an intellectual disability can go whistle Dixie". Nor did s/he say that families of pwd could and should go jump. What do you think parents/carers are fighting for when they advocate for an NDIS? Do you think they think it will mean free facials for the rest of their lives and regular paid holidays somewhere sunny? Or do you think they might be fighting for a better deal for people with disabilities? If so - where's the conflict? Where's the problem."
The other thing is that it is so bloody divisive.
As longs as we continue fighting, we loose. Instead of standing strong as a community, instead of pooling our political power, we squabble with each other. We refuse to see our commonality and focus on where we differ. We don't stop to see what we are actually saying, or asking for, because we are too busy attacking each other. And then we are surprised that the disability community carries so little political clout!? That politicians ignore disability? That our system is broken and there seems little interest in fixing it?
Give me a bloody break!
Can we just cut the crap and get on with the incredibly big job we have ahead of us.
Just stop for a minute, Todd. Stop for a minute and listen to what people are saying, before you judge them on who they are. Like my friend Sue, I am a parent - you would probably call me a carer - and we have seen eye to eye on other issues (like that ghastly add by the CPA) and you are a person with a physical disability. Yet I think you would be surprised how often we would agree - and I think we could make a good team. We might even get a decent disability system together.
Wednesday, 23 March 2011
Inside my Head
So I'm sitting on a stool, holding little Boo Boo on the big toilet. Yes, she has a fancy schmancy toilet and shower chair, but the girl wants to sit on the big toilet like everyone else in the family. Of course.
She does her wee wee proudly, and then pulls the toilet paper towards her with her left hand. When she has a decent size piece in her hand, she transfers it to her right hand and uses the left hand to pull hard. The toilet paper rips and she proudly holds it in her hand.
- Oh, where did you learn to do that? I ask. Did they show you that at school?
- No. Me think about that inside my head.
Smart kid eh?
She does her wee wee proudly, and then pulls the toilet paper towards her with her left hand. When she has a decent size piece in her hand, she transfers it to her right hand and uses the left hand to pull hard. The toilet paper rips and she proudly holds it in her hand.
- Oh, where did you learn to do that? I ask. Did they show you that at school?
- No. Me think about that inside my head.
Smart kid eh?
Tuesday, 15 March 2011
Friday, 11 February 2011
Running for the dogs!
Oh, and by the way, did I tell you what I've been up to recently? Have a look here.
So far, I've raised $1,600 for the doggies.
So far, I've raised $1,600 for the doggies.
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