22 April 2009

The case of Karyn Costello

| johnboy
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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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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.

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

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

You could dispense with the negativity. That would help.

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.

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

: )

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!

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.

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.

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.

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

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.

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….

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?

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.

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?

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!

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.

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!

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.

it also doesnt help that all gov disability agencies nationwide are very topheavy with much more admin than carers/health professionals in their employ

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.

Nothing has changed as the result of the Gallop Report or signing the UN convention. All the good intentions and platitudes from politicians will not substitute for woefully inadequate levels of funding. Getting indignant about it is not about to make a big impact on the State or federal budgets. For years, Ministers of both political persuasions have been telling me there are no votes in disability.

Anybody who thinks that we have a wonderful system that enables people with disabilities to be adequately supported with anything like an appropriate lifestyle compared to their non-disabled peers has obviously never had anything to do with the system.

Ms Costello’s situation – while horrible – is not much different to many others playing out around this town right now.

BeyondThought9:25 pm 22 Apr 09

Nice to see our photocopy salesman comment on something other than soccer.

Ah, there it is. Thanks Berra…

I stand corrected.

Please sit down. At your age you need to rest your legs…

From memory Katie managed to palm this one off as a QLD or a Commonwealth responsibility.

However, I may be wrong…

I had it confirmed to me today, from an impeccable source, that the issues relating to Ms Costello’s current situation do not fall under Katie Gallagher’s area of responsibility. Rather, the issue actually comes under Mr Hargreaves as Minister for Disabilities. So while Katie may wax lyrical, or not as the case may be, in relation to Ms Costello, Mr Hargreaves is the single point of failure here. Again Mr Hargreaves you need to spend more time getting to grips with issues concerning your portfolio.

You are there to help people that fall under your Ministerial responsibility, not ignore them. You are failing our community and the opposition, and in this case Mr Doszpot, are doing your job for you, yet again. No re-election for you….

Granny said :

On 18 July 2008 Australia joined 29 other countries in ratifying the UN Convention on the Rights of Persons with Disabilities.

Yes, but anyone can sign a meaningless piece of paper, and have no real intention of doing anything to solve the problem.

It’s almost as meaningless as saying sorry………..

I’m sure Katy has her reasons for not dealing with this issue; probably had an important luncheon to attend, or went for a quick walk around the lake with her mates.

Well, I am happy to stand corrected, Johnboy.

johnboy said :

Pretty much entirely wrong on treaties granny.

It remains to the pleasure of the commonwealth parliament to actually enact laws to bring the treaty provisions into force.

No laws, no local effect of the treaty.

Our co-signatories could do something to try and make us get a move on (sanctions, boycotts, embargos etc), but mostly they don’t care either.

Which is why locals need to get the Gov’t to back up their words with actions. But that could never actually happen, could it?

Pretty much entirely wrong on treaties granny.

It remains to the pleasure of the commonwealth parliament to actually enact laws to bring the treaty provisions into force.

No laws, no local effect of the treaty.

Our co-signatories could do something to try and make us get a move on (sanctions, boycotts, embargos etc), but mostly they don’t care either.

Granny said :

I have been told that ratifying a UN treaty is basically signing up to international law, although I am willing to be corrected.

Australia is a signatory to international law stating that a person with a disability is entitled to suitable housing. It would appear that the ACT Government is in breach of international law in this regard.

If the government decided tomorrow that sewerage and roads would be nice to have but were not a necessity, people would be outraged that basic needs were not being met.

The Australian Government has rightly supported the human rights of the one in five Australians with some kind of disability to the support they need to live in equality with the rest of society.

I would expect any ACT government to fulfil their legal and moral obligations in this regard.

Good and interesting points, Granny!

I have been told that ratifying a UN treaty is basically signing up to international law, although I am willing to be corrected.

Australia is a signatory to international law stating that a person with a disability is entitled to suitable housing. It would appear that the ACT Government is in breach of international law in this regard.

If the government decided tomorrow that sewerage and roads would be nice to have but were not a necessity, people would be outraged that basic needs were not being met.

The Australian Government has rightly supported the human rights of the one in five Australians with some kind of disability to the support they need to live in equality with the rest of society.

I would expect any ACT government to fulfil their legal and moral obligations in this regard.

Furry Jesus said :

I’m not much in favour of individual appeals to Ministers via the Opposition as a rule…. and success with mobilising political influence can easily create an unhelpful precedent for queue-jumping.

As stated FJ, Ms Costello did approach the Gov’t first. Nothing was done. When the Gov’t fails to act the opposition (in this case both Lib’s and Greens) have a responsibility to hold them to account. If they didn’t do that then not only would they would be failing in their primary role, the person involved would have no avenue to redress of their situation other than throwing themselves on the mercy of the court of public opinion (i.e. the media). 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,. Especially noting not all people have the same issues and some issues naturally take longer than others to address.

@ Granny – a good start, now lets make it a reality in the ACT!

Hells_Bells744:48 pm 22 Apr 09

Sounds great Granny.

The only problem is they have enough trouble recognising basic human rights in general sometimes.

But they will be a force worth reckoning with.

Long overdue.

On 18 July 2008 Australia joined 29 other countries in ratifying the UN Convention on the Rights of Persons with Disabilities.

“Ratifying the Convention clearly demonstrates the Rudd Government’s international commitment to ensuring people with disability are treated equally and not as second-class citizens,” Attorney-General Robert McClelland said.

Joint Media Release: Australia Ratifies UN Disabilities Convention

More than one fifth of Australians are estimated to have some kind of disability and this is expected to increase with the ageing of the population.

“As we get older, more and more of us will have reason to hope that our society really does put universal access and inclusion for people with disability into practice – whether it is a matter of being able to fully use and access housing, public transport and buildings or just basic consumer appliances,” Mr Innes said.

HREOC Media Release: A great day for Australians with disability, but there is still much to achieve

The Convention marks a “paradigm shift” in attitudes and approaches to persons with disabilities. It takes to a new height the movement from viewing persons with disabilities as “objects” of charity, medical treatment and social protection towards viewing persons with disabilities as “subjects” with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society.

The Convention is intended as a human rights instrument with an explicit, social development dimension. It adopts a broad categorization of persons with disabilities and reaffirms that all persons with all types of disabilities must enjoy all human rights and fundamental freedoms. It clarifies and qualifies how all categories of rights apply to persons with disabilities and identifies areas where adaptations have to be made for persons with disabilities to effectively exercise their rights and areas where their rights have been violated, and where protection of rights must be reinforced.

http://www.un.org/disabilities/default.asp?navid=12&pid=150

Al least when the purchase of Calvary goes through people with disabilities will have a choice around which side of Canberra they’re inappropriately hospitalised on.

Having said that, I’m not much in favour of individual appeals to Ministers via the Opposition as a rule. There’s already a number of people who aren’t qualifying for the limited resources in the disability sector, and success with mobilising political influence can easily create an unhelpful precedent for queue-jumping. Karyn Costello sounds like a deserving person, but we don’t know who else needs similar help, let alone how much it would cost.

and sorry for may appalling grammer and spelling. Angry… very angry….

In addition to my comment @ #7, I probably didn’t make it clear in response to JB’s comment on the OP (i.e. “The lesson here might be to approach a Government MLA first if one has a problem?”)… that by all accounts Ms Costello’s advocate(s) did approach the Gov’t first but recieved no Action. Good on Steve Doszpot for addressing the issue, Ms Costelle at least has someone championing her casuse. I was also incorrect in blaming Ms Gallagher for the inaction as Hargravesis Disabilities Minister.

C’mon Hargraves, where’s Ms Costellos’ assessment? If it’s too costly, can we at least look at selling Grasby’s statue to raise the money for it?

Granny said :

So obviously we should just leave them to rot.

obviously not granny…..something needs to be done quickly…..this individual case is absolutely appalling……even more appalling is that this case is by no means isolated or unique…..

So obviously we should just leave them to rot.

I think you will find it is costing just as much to keep Ms Costello in hospital as it would cost to support her with proper dignity in suitable living conditions.

Unlikely.

I shouldn’t be up to the Minister to act, there should be a system in place that allows people in these situations to access the support they need. Unfortunately it’s not until you get yourself into a situation like this that you realise how woefully inadequate the system is.

Just because someone is proved to be in need of an ISP doesn’t mean one will materialise.

Letting people languish in hospital happens OFTEN, ALL over Australia.

Steve Doszpot has apparently been visiting Ms Costello for a few weeks now, offering suport and trying to get the Minster to act on her behalf. You’d have thought the Minister would have done so by now. It’s not as if she couldn’t have been aware of the issue.

At a time when Ms Gallagher could do with some positive press, she needs to come though on this. At present, her best simply isn’t good enough!

How much would it be costing to support this lady in hospital? A fair bit I imagine.

Comes out of a different budget though.

I think you will find it is costing just as much to keep Ms Costello in hospital as it would cost to support her with proper dignity in suitable living conditions.

But that’s hardly the point.

Hospitals are designed for those who need medical care, not as housing solutions.

Nobody would want to be stuck in hospital once they are well enough to be discharged.

I really don’t think this is good enough.

Muttsybignuts11:38 am 22 Apr 09

How much would it be costing to support this lady in hospital? A fair bit I imagine.

VYBerlinaV8_the_one_they_all_copy11:21 am 22 Apr 09

Stick in some extra speed cameras. Those cheeky buggers in wheelchairs fairly fly down some of our footpaths!

Problem easily solved – let’s spend some more money on public art.

Usually by the time something has been escalated to this point, the Government MLAs have shown their (un)willingness to act and one approaches the crossbenches/opposition out of desperation.

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