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The case of Karyn Costello

By johnboy 22 April 2009 50

Steve Dozspot is raising a hue and cry over the case of Karyn Costello who has, apparently, been living in hospital for two years because her disabilities have on into the “too hard basket”.

    “Ms Costello has been confined to a wheelchair, forced to wait since 2007 in Canberra Hospital for a Disability ACT Individual Support Package (ISP), which would enable her to live at home.

    “Karyn’s needs were last assessed for an ISP in June 2008 and her requirements were then categorised as being at the highest level.

    “Since the assessment last year, her condition has improved and Karyn has now regained minimal use of her arms and hands.

    “Despite this improvement, which would significantly reduce the assistance required, it appears the Government is still under the assumption that Karyn’s case is too complicated and costly to address.

    “I have last written to the Minister for Disability on the 7th April asking for an urgent new assessment of Ms Costello. To date, I have not received any response from the Government on when Ms Costello’s reassessment will take place and no indication of a timeline to resolve this case.

The lesson here might be to approach a Government MLA first if one has a problem?


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The case of Karyn Costello
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Granny 7:22 pm 24 Apr 09

Thanks, willo!

: )

Those interested in helping can contact me at granny1963@gmail.com, but be warned that I don’t check it often. I’ll check it for a few days after this post, however.

My group mainly formed around special ed issues, but we also have people involved in loving and caring for adult relatives; so our issues are broadening as different people join with different pieces of the overall picture.

However, there are many such advocacy groups that are worthwhile.

Our main focus is being small, manoeuvrable and free from organisational bureaucracy and petty politics. We are can-do, up-beat, positive people. Our meetings are unstructured but at the end of them we all know what we’re doing and we do it. We’re not there to bitch and moan, but we do support each other as and when needed.

Some of our members have been fighting these battles for decades. It is exhausting and demoralising, but when you’re not alone it’s encouraging and invigorating. When life hits one person in the guts, another person steps up to fill the gap. When life normalises they’re back and in the stride, and that’s just how it is. We have big dreams and big goals.

Like Martin Luther King we do have a dream. This is every bit the civil rights issue of the 21st century. It needs to be fought and somebody needs to fight it. The time is now.

To me, Karyn Costello is Canberra’s Rosa Parks. Maybe one day she woke up and thought, “Why should I have to stay locked away here?” just as Rosa thought, “I’m bloody tired, why should I give my seat to this white bitch?”

We will not rest until people with a disability have the same opportunities and rights as everybody else. The more groups and individuals work together to pursue this fundamental common goal, the more resources will be provided to go around.

You can’t feed a village by squabbling over a handful of grain.

We are through with begging. We are purposed to enact a specific human rights agenda that endows people with basic, inalienable human rights and dignity.

The circumstances of those in our group have changed quite markedly in some cases, because we are squeaky wheels, but this is not what we’re after. Our goal is that no parent or carer will walk this road again. It’s hard enough, and sad enough already.

willo 6:14 pm 24 Apr 09

Granny said :

Yes it is, and I’m going to do it with a little help from my friends. Lots of things in society have changed. There is no reason to expect this cannot or will not.

By the time we are through with the system no other carer will ever have to fight these battles again.

And I will see you all back on this thread in two years to count the changes we have seen.

cool….keep us all informed and let us all know what can be done to help you in your endeavours

s-s-a 5:58 pm 24 Apr 09

So what do you suggest? I am genuinely interested to know. What were you alluding to in #41 and how can I/everyone help?

Granny 11:49 pm 23 Apr 09

You could dispense with the negativity. That would help.

s-s-a 11:43 pm 23 Apr 09

Two years?? Would be nice, but I won’t be holding my breath.

And if I thought I could usefully do something to help I would.

Granny 3:56 pm 23 Apr 09

Thanks, BerraBoy … your help and support are so appreciated!

: )

BerraBoy68 3:53 pm 23 Apr 09

Granny said :

Yes it is, and I’m going to do it with a little help from my friends. Lots of things in society have changed. There is no reason to expect this cannot or will not.

By the time we are through with the system no other carer will ever have to fight these battles again.

And I will see you all back on this thread in two years to count the changes we have seen.

+1. With you all the way, granny!

Granny 2:56 pm 23 Apr 09

I actually believe that it’s a very exciting time within the assembly and also the wave of change that is sweeping in relation to disability.

There are some powerful advocates for disability in every party, and I appreciate all their efforts in effecting the change taking place.

I think the ACT is going to be a world-class model in many areas, education and disability in particular.

To all those MLAs and MPs who are assisting this process, or even not trying to stop it, I thank you from the bottom of my heart.

RayP 2:49 pm 23 Apr 09

One aspect to this thread, as there now seems to be to a number of threads on Riotact, is that there seems to be a solidifying perception – assumption that despite the election results last year that there has been no change in he functioning of the ACT Government.

Such hopes as people may have had after the election seem to have disappeared. These hopes also seem to have disappeared without people noticing or talking about it or perhaps making a conscious assessment.

I don’t know if this assumption of no change is justified across the ACT Government. And I may be misinterpreting the comments and underlying assumptions.

But I think it it may be interesting and politically significant if this assumption is locking in place in the ACT community.

Granny 2:30 pm 23 Apr 09

Yes it is, and I’m going to do it with a little help from my friends. Lots of things in society have changed. There is no reason to expect this cannot or will not.

By the time we are through with the system no other carer will ever have to fight these battles again.

And I will see you all back on this thread in two years to count the changes we have seen.

willo 1:13 pm 23 Apr 09

agreed….and yes it is not going to change anytime soon……

s-s-a 1:04 pm 23 Apr 09

those groups tend to only get involved after an isp has been set up to fund their involvement

Not necessarily. Sometimes auspicing agencies can help the person get their ISP – certainly they would be better placed to work thinkgs out than the discharge planning people at the hospital. ADACAS could certainly get involved now.

The sad truth is that despite people becoming disabled on a regular basis, every single time it happens it’s like playing a broken record. And after nearly 10y involvement in the system I have no faith in it changing any time soon.

willo 12:12 pm 23 Apr 09

ssa those groups tend to only get involved after an isp has been set up to fund their involvement…..ACT disability needs to step up on this one and either give ms costello support in her own home or set her up in their accommadation support program in an act disability group home…..I would not be holding your breath though the department is crying broke atm….

s-s-a 12:02 pm 23 Apr 09

Does she have her own home? I thought from an earlier story in the CT that she was in public housing?

Anyway, the issue is that she needs support even if suitable housing is ready and waiting. And I know that costs money and I know that bureaucrats from the department will happily sit in their comfy offices and tell you there isn’t any. But then again after work they get to go home to their comfy houses and families and forget about it…

BerraBoy do you know if any of the agencies like Community Options or ADACAS are involved?

BerraBoy68 10:48 am 23 Apr 09

s-s-a said :

We should all be standing together to ensure that everybody gets what they needs.

Excuse the pun.

You know I once got told by someone in a disability NGO to basically “shut up, you’ve got what you want”. I continued to put time and effort into trying to change/improve the system for a couple of years until I worked out that I was bashing my head against a brick wall. An issue that was a key recommendation of the Gallop Report was in progress when I was pregnant with my daughter who is now at school (because I can remember trying not to look nauseous in meetings) and the issue has not progressed significantly.

How many other people have been waiting to leave hospital in the ACT longer than Ms Costello? I’d say she’d be at the head of that queue

There are people who have been assessed as needing a high level of support and cannot get an ISP for WAAAAAAY longer than 2y. I agree they are not in hospital, but at least in hospital Ms Costello has her personal care needs reliably met. I know people living on two meals a day and showering 2-3 times a week because they can’t get enough support for someone to help them with lunch and shower them daily. Not to mention people who are forced to only empty their bowels on Monday Wednesday and Friday because that’s when the community nurses can fit them in. And too bad when there’s a long weekend!

There is funding available to get young people out of nursing homes. Perhaps Ms Costello should get herself moved?

Ms Costello needs to get home, to her own home. Being kept anywhere other than her own home is unacceptable, as is anybody waiting 2 years for basic care that helps them live a decent life.

It seems we’re actually arguing the same points on many issues, other than that of Ms Costello trying to jump some perceived multidimensional but singular queue.

s-s-a 9:10 am 23 Apr 09

We should all be standing together to ensure that everybody gets what they needs.

Excuse the pun.

You know I once got told by someone in a disability NGO to basically “shut up, you’ve got what you want”. I continued to put time and effort into trying to change/improve the system for a couple of years until I worked out that I was bashing my head against a brick wall. An issue that was a key recommendation of the Gallop Report was in progress when I was pregnant with my daughter who is now at school (because I can remember trying not to look nauseous in meetings) and the issue has not progressed significantly.

How many other people have been waiting to leave hospital in the ACT longer than Ms Costello? I’d say she’d be at the head of that queue

There are people who have been assessed as needing a high level of support and cannot get an ISP for WAAAAAAY longer than 2y. I agree they are not in hospital, but at least in hospital Ms Costello has her personal care needs reliably met. I know people living on two meals a day and showering 2-3 times a week because they can’t get enough support for someone to help them with lunch and shower them daily. Not to mention people who are forced to only empty their bowels on Monday Wednesday and Friday because that’s when the community nurses can fit them in. And too bad when there’s a long weekend!

There is funding available to get young people out of nursing homes. Perhaps Ms Costello should get herself moved?

BerraBoy68 8:06 am 23 Apr 09

Granny said :

I really hate people from the disability sector squabbling over funding. We should all be standing together to ensure that everybody gets what they needs.

If somebody else gets something good you certainly won’t hear me complaining about it.

As long as people with a disability and their carers are forced to beg for their human rights, the reactive squeaky wheel system will be reinforced.

If one in five Australians have a disability in one form or another they should stand together and they will be listened to.

Basically this woman is being confined in an institution against her will.

This is just wrong.

Well said Granny!

BerraBoy68 8:05 am 23 Apr 09

s-s-a said :

I’m not sure a women who has waited for Government action to get her out of hospital and into her own home for 2 years can be described as ‘quie jumping

Quite simply it is. Squeaky wheels get oiled. Especially in this sector and this situation.

Actually it’s not. How many other people have been waiting to leave hospital in the ACT longer than Ms Costello? I’d say she’d be at the head of that queue.

You seem to be implying that we are all in one long queue that deals with all disability issues, which isn’t the case as the system actually does have different areas to help various groups of people, so there are actually many queues of people lining up for various services at the same time. To say Ms Costello should wait because someone else may need respite care for family member (for example) is a bit nonsensical. The main issue is that many people are awaiting action on various issues and the Gov’t needs to get a system in place that can handle these issues simultaneously.

willo 10:33 pm 22 Apr 09

Granny said :

I really hate people from the disability sector squabbling over funding. We should all be standing together to ensure that everybody gets what they needs.

If somebody else gets something good you certainly won’t hear me complaining about it.

As long as people with a disability and their carers are forced to beg for their human rights, the reactive squeaky wheel system will be reinforced.

If one in five Australians have a disability in one form or another they should stand together and they will be listened to.

Basically this woman is being confined in an institution against her will.

This is just wrong.

absolutely!

Granny 10:29 pm 22 Apr 09

I really hate people from the disability sector squabbling over funding. We should all be standing together to ensure that everybody gets what they needs.

If somebody else gets something good you certainly won’t hear me complaining about it.

As long as people with a disability and their carers are forced to beg for their human rights, the reactive squeaky wheel system will be reinforced.

If one in five Australians have a disability in one form or another they should stand together and they will be listened to.

Basically this woman is being confined in an institution against her will.

This is just wrong.

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