They tied her to a chair and fed her drugs

Family Carer says:

09:41am | 08/06/11

QED Nick.
You’ve just demonstrated the author’s point perfectly. That the system is so messed up that no one, except those stuck in the middle of it, would actually think it possible in the 6th wealthiest nation in the world.
There are no lies here. Each of the examples given are no exaggeration. While I haven’t seen anyone wait six months for a spoon, I have seen 9 month waits for a footplate for a wheelchair, 12 months for a ramp to get into a house, five years for a wheelchair, 9 months for an intake appointment with a State disability body, and 2years for a shower chair for a child (family gave up after two years). As for accommodation, the picture is far grimmer. Last night I met with six sets of elderly parents, all despairing that they will die before their children have a home.

Dogbolter says:

01:29pm | 08/06/11

Nick, you’re an idiot. The reason why this person’s typing is so good is the same reason mine is - you can go back and correct it. It’s not a typewriter. There’s one obvious troll here, and it’s name is Nick. Go back to your chum Erick and saying how men have it so bad and feminists are responsible for all the wickedness in this world. You will never know what it’s like to have a disability or live with someone who has one.

Faye says:

10:22am | 09/06/11

Wow Nick, you show such compassion, empathy and regard for others. Ironically disability services employ a lot of people like you. Which is why there are so goddamn awful that I wouldn’t let my dog live in a group home. Unfortunately ageing parents have no other options.

It’s a national disgrace and I have to wonder if an expose was done by Four Corners on the mistreatment of people with disabilities in state accommodation whether it would garner as much outrage and condemnation as the one last week on the mistreatment of cattle in Indonesia.

Goldenfaber says:

07:35am | 11/06/11

Faye is right. Disability services in South Australia at the Governemnt level is riddled with nepotism and networks who are only interested in holding power like all long standing organisations are. Tis the same every where - i once had a friend who did volunteer work at the Red Cross and he said the entire office was made up of groups who hated each other and spent all day ruining other peoples lives….  Also in my experience it is one of the most poorly funded parts of the Government.

Jay-ded says:

09:57am | 08/06/11

More likely she’d “talk” down to you shaking her head and half whispering in her condescending tone, “I and all Australians feel for you and your family and everything you’re going through…...”

Just don’t expect her to do anything about it.

sue o'reilly says:

07:07pm | 08/06/11

Julia Gillard wouldn’t even do that Jay-ded. A month or so ago, I wrote to Gillard, politely inviting her to go to the effort of spending just part of one day with a person with a severe disability and their family carers - and bear in mind, 96% of adult Australians with severe disabilities live with and are cared for by a family member, usually an aged sole parent, usually the mum, because there’s nowhere else available - prior to making a landmark decision later this year on whether to introduce an NDIS or not, a decision that will affect millions of lives for decades to come. I believe that, like Malohi, Gillard can have no possible idea what a shambles the current system is until/unless she has personal contact with a person with a severe disability (which I bet, like Malohi, she’s never had). Gillard’s office replied that she couldn’t possibly accept all the invitations that came her way and she was too busy “on this occasion” to accept.
As this invitation was totally open-ended - any time, any place, any day convenient to her, any time within the next several months, I found this to be an unacceptably lame excuse, and wrote back saying so. I also pointed out that as I was a freelance journalist planning to write about this exercise for a national paper, her media office might like to reconsider, because such a lame excuse was not going to do Gillard’s already poor public image as being cold, condescending and uncaring (not that I put it quite like that) too much good at all.
I then got a nasty email from her Communications Director, Russell Mahoney, expressing outrage that I would dare to “threaten” the PM in this manner, and generally telling me to go stuff myself. Charming. Who would have thought any spin doctor working for a PM could be such a delicate petal - let alone miss such a heaven-sent opportunity to make his boss look like a decent, genuinely caring human being for a change?? No wonder Gillard’s personal approval ratings, and her Govt’s poll ratings, are in the toilet.
Anyway, if anyone out there agrees with me and would like to explain to Russell why, his email address is russell.mahoney@pm.gov.au
Don’t expect a response though, unless he thinks you are someone important.
(ps - I also extended the same invitation to Tony Abbott, who is currently still “thinking about it”.)

John Carpenter says:

07:39pm | 08/06/11

Well I couldn’t agree more with you sue o’reilly. I have been looking after my invalid mum for several years now. I haven’t had any trouble at all with the governmental arrangements, but I did in fact write to the minister and the shadow minister about a minor change that Centrelink was proposing for her allowances. The Minister replied promptly and although I wasn’t happy with the response, at least I got a reply. The shadow minister hadn’t replied after at least 3 months, so I emailed a follow-up and got a terse two sentence reply which basically said “couldn’t give a stuff - far too busy to deal with you”. So they’re not even “thinking about it” - funny way for an opposition to behave if you ask me.

Family Carer says:

10:31am | 08/06/11

Malibu - you don’t see this family’s 47 years of full time care ( and subsequent loss of one parent’s income and associated huge additional expenses as personal responsibility?
Pay for someone to clip those toenails? From what income? These parents are too old to work, may have been unable to ever bug a home due to the aforementioned. And when these parents die, who will pay for it then?
I’ve followed your posts here before. It’s clear that you need to spend a day with a family in this situation before you judge so harshly.
Maybe there’s a reason for the repeated themes in this column. Maybe personal responsibility can only go so far, and that government really should help out our most vulnerable folk.
Maybe you don’t think education should be tax funded either? People shouldn’t have kids if they can’t afford to educate them. Is that thenkind of thing you mean by “personal responsibility”?
The disability of a child cannot be insured for. The subsequent massive loss of income and famy breakdown are outside of the demands of “personal responsibility”. 
What ever happened to “community responsibility” or should we have none and just kill anyone who is born with or acquires a disability?
I know you don’t say that Malohi? But it’s not a huge jump from what you say ie: if family can’t look after then bad luck.

malohi says:

06:28pm | 08/06/11

Youre right, I apologise. i will not comment on an AC thread again. I was under the impression he wanted respect and legitimate argument of the issues. obviously only sycophants are allowed.

caro says:

07:49pm | 08/06/11

No Malohi, just people who have the first friggin’ clue what they are opining about - preferably. Burt good idea, just go away and pick some other target for your cruel, heartless, ignorant opinions who doesn’t happen to be among the most disadvantaged, vulnerable, poverty-stricken groups in Australia. We all suffer enough, Malohi, without having to suffer fools like you too.

Christene Butler says:

12:08am | 10/06/11

It fascinates me that our Government as you mentioned will support all those who have chosen, in most cases to put themselves in the situation where they need assistance, single mums, with multiple children, drug addicts,  long term unemployed. They receive financial support and in a lot of cases accommodation. Families of young adults with a physical disability have tabled too many times to count a proposal to have accommodation built on a plan of multiple villlas. units duplexes, where these adults can live with support on site. Setting this up like a retirement village would save dollars as the staff could be shared and there could be someone on site during the night for those medical emergencys that do occur. Government rejects this time and time again stating that they would turn itno slums. How many retirement villages are slums..??? Yet they then proceed to build blocks of units and move the long term unemloyed, the drug addicts and other people who have no desire to improve their lot as they have found a way to work the system to their advantage…what happens to theses buildings..they usually turn into unkempt untidy slums….wouldnt it be refreshing if our government that is supposed to be there for the people took the time to gettheir priorities right. The aged, who have most probably contributed financialy all their working life, and the disabled, who did not ask to be born that way should be helped before the losers who will not take responsibility for their lives. There are services out there that are supposed to help but unfotunately the vulnerable who need to access them are made to feel like second class citizens each and every time they need to access them. I have always prided myself on being non judgemental but unfortuately the frustrations and the unfairness that I have encountered over the last 30 years of being a mum of a disabled young man have made me so very cynical and sad when I have to see my son, who has so much to face up to each and every day struggle to just be treated with some respect.

Alexis is blessed says:

06:37pm | 08/06/11

Fairsfair next time maybe you want to reread the article before you post a callous and harsh comment.

From how I read the story, these dedicated parents booked their 30 year old in who was accepted after a 17 year long wait. So by now this 47 year old has parents who are probably in their mid seventies, one seemingly with parkinson. Yes, fairsfair this old couple was really trying to push liability onto a third party ..
Very much not!

You say, Sometimes really bad things happen to really good people - it is called life. Yes such as this older couple, who obviously dedicated their lives to their kid and who are posting to get a little understanding, compassion and hopefully a few answers and instead they get a hammering.

These people aren’t blaming anyone. They are simply despairing that they aren’t able to provide a more appropriate place for their kid to live.

That makes me cry. As do the callous comments on this post.

fairsfair says:

07:06pm | 08/06/11

“The Angry Cripple series” and as you will see I excluded Alexis from my view.

I was merely just venting my opinion AIB. I am just as disillusioned with the system and though I didn’t conclude with the statement, my point is that if more people shared the attitude of my family there would be plenty more services available to people like Alexis, her family and those others our there who have no other avenues.

It is people like my family - who refuse to accept change and turn to the system to preserve their former lifestyle - that are causing the issues for people like Alexis and her parents.

fairsfair says:

08:19pm | 08/06/11

well my original response to this seems to have gone missing, so here is take two….

“The Angry Cripple Series” is the opening statement of my comment and you will also note that I excluded Alexis.

Though I may not have used the statement, my point was that people that don’t really need help are being offered too much and those that do need help are being offered to little. I am just as disillusioned with the system.

People like my family - that could handle most things themselves yet believe that they have the right to turn to the system to preserve their lifestyle - are causing issues like the one experienced by Alexis and her family. If people like my family were not such a drain on the system, people like Alexis, her family and those also in the same boat would have more available to them.

Malohi above makes a very good point too. If you are completely unable to sit back and actually discuss the topics at hand and believe the only way to help is to say “yes, yes she truly is blessed, I am appauled etc” - it is not helpful. It offers nothing to the debate or the subsequent policy changes required. I would say Alexis’ mum is jack sick of the patronising comments that she has faced her entire life. I am only eight years into it and I can tell you right now, I am over the pity already.

marym says:

11:16pm | 08/06/11

Fairsfair, no one is advocating not taking personal responsibility for their disabled child. All parents of disabled children already do that.
These parents, who provide 24 hour care, need access to essential services for their children whether it be equipment, therapy, day programmes, home care, respite and later in life, supported accomodation.
Our society has allowed accident victims to sue for their needs, often leaving the court with millions of dollars. Why millions? Because courts have deemed millions to be necessary for the ongoing care of these individuals…
However, if you are born with a disability you don’t need millions, just a caring family and parents who at the end of their life find themselves wearily saying to their disabled child.
” We (usually I) am about to die, now your siblings will look after you and one of them will give up work to look after you and maybe his/her marriage will break down under the strain of fighting for your basic needs.
I am sorry, but you can’t move into a house with your friends or loved one like your brother/sister have done. ( Yes, surprise surprise, many severely disabled people form friendships and loving relationships with other severely disabled people)
You are not allowed to determine what you would like to do with your life, like most other people in our wealthy, civilised society.
You have to be a charity case living off the charity of your family. You have no right to self determination because you had the misfortune of being born disabled. By the way, don’t worry because when your siblings run out of money, you can all live off welfare”.
Cynical, maybe but when most people will have access to their superannuation payments after a lifetime of work, disabled people and their parent/carers won’t.
This is why we need a National Disability Insurance Scheme.

Alexis is blessed says:

11:36pm | 08/06/11

Not as many years as we are fairsfair. A bit ratty tonite are you, that you must even criticise and trivialise a genuinely meant compliment being given to carers who have obviously gone to hell and back for waaaaayyyyyy longer than you. Cheap shot. You’ve got a lot of growing up to do.

Alexis is blessed says:

07:25am | 09/06/11

Not nearly as many years into it as we are fairsfair. Feeling a bit ratty tonite are you, that you must even criticise and trivialise a genuinely meant compliment being given to carers who have obviously gone to hell and back for waaaaayyyyyy longer than you. Cheap shot. You’ve got a lot of growing up to do.

Having disability in the family doesn’t make you an expert babe, it makes you just another sufferer with another opinion or in your case just another gripe with a well meant compliment.

fairsfair says:

09:24am | 09/06/11

You response to me proves that you fail to understand so much more than just the words I had written.

fairsfair says:

09:34am | 09/06/11

@marym - you make some very good points and I do agree with you, but I believe that famiily (including siblings) should be more involved. I also think the system will be easily abused and those (like Alexis) who genuinely need the services will again suffer at the expense of those in a more fortunate position than them.

I honestly don’t have the energy to further discuss this with you I am sorry. The Angry Cripple series was supposed to be about debate on future disability services in Australia, but it is simply proving to be a blog where you must agree and whimper at the story behind the issue or shut your mouth.

It is simply not worth it, because I am too busy worrying about my father and focusing on his well being to protect every opinion I have that is grossly misinterpreted by other people who are unable to maturely converse on this matter.

Dr Bartolo's ward says:

01:01pm | 11/06/11

Hi fairsfair, I think it’s very useful for you to come on this blog and give your comments, however your strong opinions smack of an “I know best” arrogance which can be construed as insulting. Little wonder that your opinion tends to generate more heat than light but you must understand that many of the people to whom you opine have been providing care and support 24 hours a day, 7 days a week for many decades and the worry that consumes their peace of mind is “what will happen when I die”

I realise that you are 8 years into this “disability” thing and of course we are unaware what level of care your family member requires. I’ve been at it for 15 years and the people I am talking about are those who care for someone whose care involves   personal care, toiletting,showering, drying, dressing and feeding, transporting etc… or to supervise all those activities at a micro-level. To say nothing of also running a house, trying to keep up relationships with family and friends, nurse, make and keep appointments for and the myriad daily chores involved in caring for someone with high support needs, and heaven help us some also have to work to keep a roof over their heads. Many cannot work so therefore have no superannuation, no home ownership so are at the mercy of the rental market, each situation is different but the same if you get my drift.

You believe the onus of housing and caring for the person with disability 24 hours a day 7 days a week for a lifetime should fall entirely on the family - you also talk of home ownership. Firstly what if the family fractures and totally disintegrates because of the effort of trying to provide the housing and care 24/7, what if the extended family simply walks away and doesn’t want to know. What then? Pass a law? Divorce and family breakdown occurs in over 85% of all families where there is a significant, lifelong and dependent disability caused at birth or by illness, accident, mental illness or frailty.

The other most pressing thing is money. Where does the money come from to buy a house and pay for it? I don’t know if you understand what severe and significant dependent disability actually is? But there will be those on this blog that will help you to understand and I hope you accept the lessons with grace because you obviously do not live the circumstances that so many tens of thousands live on a daily basis, it is not a “perhaps” for them. I am sure that if you were to spend a day or so in the thick of it you would have an entirely different perspective. Knowing about it is not the same as knowing about it by living it

Lisa H. says:

12:35am | 09/06/11

Hmm, the big issue is that it is much easier to lean on the families and parents of disabled people, because the costs of care etc are very significant. Insurance is absolutely vital.

Comparing this situation with the Indonesian abbatoirs is a no-brainer, they are completely different situations… apples and oranges.

For a start, it doesn’t cost much to kill an animal humanely.
It costs a lot to maintain decent quality of life for a seriously disabled
But, honestly, comparing the two situations is offensive and ridiculous.

caro says:

09:14am | 09/06/11

@Lisa H - yes, of course they are totally, completely different issues, but I think the point that was being made is that it has puzzled many of us that there’s been such a massive outpouring of outrage from the Aussie public when the conditions in the Indonesian abbatoirs were exposed, yet relatively there’s so little public concern whenever the conditions in which Australians with disabilities and their families are currently forced to exist are exposed. Comparing the difference in public response is not apples and oranges at all. And if you doubt me, compare the number of posts on any Punch article re the abbattoir story with the number of posts on this or any other Angry Cripple column.

Faye says:

10:37am | 09/06/11

Exactly Eva, this small problem is indicative of a wider culture that exists within the disability sector where ‘care’ has hit absolute rockbottom. I’d love to see a Four Corners expose on the mistreatment of people in state run and state funded care. Panorama just did one in the UK and the findings were shocking. Were one to be done here I think it would be much worse.

Eva says:

02:52pm | 09/06/11

Faye,

I think the production houses in Britain put out a lot more thoughtful TV than those here. Last time I was there I watched a series of programs on care for the elderly. Those programs beamed into the homes of millions of people and started the conversation about what level of care was wanted versus what was going on. I don’t know that much changed but it certainly made the general public fully aware of what had been hidden and whispered about.

Elizabeth says:

05:04pm | 06/07/11

Earth, think you are missing the point, not everyone is capable of home-schooling their child, not every child is able to be home-schooled and that if I read the article correctly, it isn’t even about school, (“we waited 17 years to get her in”) it is about dignity and the right for all to live in dignity!

I had to choose to let my mother be medicated to keep her in an aged care facility close enough that I could get there to deal with ‘spotfires’ when necessary, and where she could have access to the GP and Psychiatrist that she had chosen, rather than let ‘the system’ move her where it saw fit, to see whom they saw fit, and deal with her how they saw fit.  I fought the system and as a result I was the one who ended up ill from the stress of it all.
I am aware that this is a very late post to this thread, but if anyone out there is reading please, this situation has to be relieved.