Sth Aust CFS org. my issue with the local CFS Society.

[taniaaust1]

The SA government has had a big investigation being done on disability and disability services by something they set up called the Social inclusion board. This was to investigate and put to the government where changes are needed.

Over 2000 individuals (thou it caused near collapse, I gave a public talk to the board at one of the meetings) along with 120 different organisations took part in the consultation process. Im very annoyed as I just looked and SA CFS org didnt choose to have any input at all in this.

They should of known this was going on.. those on the panel even told me they'd send them info on this as I enquired and saw the SA CFS org wasnt on the original consultation list as the ones doing the disability investigation for the gov. didnt know about our org. Tthe investigation meetings were also publicized about the state but I wanted to make sure they knew about it and could provide imput on how we are affected and the problems with the services for us so also spoke to the panel about our org making sure they'd be informed). I also are quite sure I also emailed the CFS org about it.

I got in the post Friday, the SA blueprint (119 pages long) which has come out of this consultation with orgs and people, (which is a gov implimentation plan is going to be formed for disability for 2012-2020). Anyway i rechecked the different disabilities groups involvement in this.. Autism org, the org for the blind, Downs Syndrome Society, the intelectual disability societies etc.... I see that the SA CFS society didnt use this very rare chance to help bring change for those of us on a government level with this illness at all.
....

All I can say.. is Im so so sad about that.. They could of shared how we have trouble with centrelink getting disabilities cause of a severe illness which varies and so many other things eg the high discrimination of gov depts due to the illness we have and gov. depts being naive about it. (I note the MS society wasnt involved either).

This is a huge opportunity which has been lost. We need change on goverment levels.. but our orgs which should be our voices, when they have the chance and gov is investigating what needs to change.. they dont bother being involved to change things and dont put a submission or anything in.

..

anyway.. the blueprint which has been put together from the consultation of the other disability groups and individuals who did partake which is going to goverment for implimentation is at http://www.socialinclusion.sa.gov.au/page.php?id=27
........................

I'd like to add to this that I rang in crisis the CFS assoc about a month ago for emotional support and desperate due to me situation.. and asked them what are they doing to help change things.. and the reply I got was that I need to be patient and things will change with time as more doctors nowdays know about CFS then did in the past.

told I just need to be patient... Ive been dealing with gov discrimination and the discrimination now of doctors and others to do with this illness for 14 years. I choose and went to jail for a month as I couldnt feed myself well and was going hungry so wanted to go to jail as it was the only way I saw out of my problems.. I still cant always cook for myself... and the person at the org just tells me I need to "just be patient". He/she obviously isnt having trouble just feeding himself and has never feared for his life with this illness.
(He was a nice person but obviously just didnt understand how serious this condition is in some of us. I truely believe that if I get bad again, I could die, if it wasnt for my children living with me in the past when I was worst.. I would of died. So Im in constant fear of I may get bad again knowing I cant look after myself).

I really hope the org reads this.. they should be ashamed of themselves for doing nothing when they could of hugely done something to help support us all. NO ONE should be in the situation some of us are in Sth Australia .. and only change at very high levels can change this for us. This should of been a top priority thing even if the only thing which was done for the year at the org level.

 

[taniaaust1]

Some info from the goverment investigation (which Premier of SA, Mike Rann set up in 2009 just finished now).

The invesigation was set up as "we are sorely lagging behind the nation when it comes to supporting people with disability"

Sth Australia has the highest percentage of disabled compared to the other mainland Aussie states. A less percentage of disabled get the help they need compared with the other Australian states..

Over 33% of carers of the disabled here are children 15 years or younger eg children caring for disabled parents etc . Some of these child carers are as young as 5 years old.

"Proportion of people with disability who reported needing assistance who did not recieve it, 2003 4%
2009 14%"

(note that statistic would be screwed up as that is those who manage to actually get on waiting lists.. I kept been knocked back and taken off such lists. There is a very high percentage of disabled here who need help but cant get it).

On International level, Australia ratified the United Nations Convention for the Rights of Persons with Disability (UN CRPD) in July 2008 but the principles of this arent being met.

One of my fears have been addressed in the recommendations.. I have a fear of being put into an old folks home if I get very sick to the level I was in the past. One of the recommendations being put forward is to get those under the age of 50 out of such homes and into more suitable age appropriate accommedation.

They have also addressed issues with the legal system I had which dont cater for those with disablity.. I once had to plead guilty for something I didnt even do in court, as it was the only way I could get disablity support (no support for if someone is innocent) and saying I was guilty got me a case worker throu a long drawn out court case, which I wouldnt have been able to handle otherwise.

I did share about what legally happened to me to the board..so are very happy to see they are recommending an overhall of the legal system as far as disablity goes to make it better for the disabled. No one innocent should have to plead guilty just so they have support.

(Unfortunately I didnt get time to talk much about CFS at the talk I gave as I had so many other disablity issues to address there so hence why it was so important for the SA CFS org to have gotten involved).

 

[Mary Poppins]

It's unfortunate, isn't it Tan? I will say this though, 'social inclusion' has been a human services buzz word for about 2 years now. It's highly fashionable to be seen to be doing things to maximise 'social inclusion'; the thing is, most people don't really know what it is or how to achieve it as an outcome.

Thanks for posting this, and also thanks for the work you've done in highlighting the challenges experienced by us. You're a bit of a superstar

 

[ginahgulla]

The SA government has had a big investigation being done on disability and disability services by something they set up called the Social inclusion board. This was to investigate and put to the government where changes are needed.

Over 2000 individuals (thou it caused near collapse, I gave a public talk to the board at one of the meetings) along with 120 different organisations took part in the consultation process. Im very annoyed as I just looked and SA CFS org didnt choose to have any input at all in this.

They should of known this was going on.. those on the panel even told me they'd send them info on this as I enquired and saw the SA CFS org wasnt on the original consultation list as the ones doing the disability investigation for the gov. didnt know about our org. Tthe investigation meetings were also publicized about the state but I wanted to make sure they knew about it and could provide imput on how we are affected and the problems with the services for us so also spoke to the panel about our org making sure they'd be informed). I also are quite sure I also emailed the CFS org about it.

I got in the post Friday, the SA blueprint (119 pages long) which has come out of this consultation with orgs and people, (which is a gov implimentation plan is going to be formed for disability for 2012-2020). Anyway i rechecked the different disabilities groups involvement in this.. Autism org, the org for the blind, Downs Syndrome Society, the intelectual disability societies etc.... I see that the SA CFS society didnt use this very rare chance to help bring change for those of us on a government level with this illness at all.
....

All I can say.. is Im so so sad about that.. They could of shared how we have trouble with centrelink getting disabilities cause of a severe illness which varies and so many other things eg the high discrimination of gov depts due to the illness we have and gov. depts being naive about it. (I note the MS society wasnt involved either).

This is a huge opportunity which has been lost. We need change on goverment levels.. but our orgs which should be our voices, when they have the chance and gov is investigating what needs to change.. they dont bother being involved to change things and dont put a submission or anything in.

..

anyway.. the blueprint which has been put together from the consultation of the other disability groups and individuals who did partake which is going to goverment for implimentation is at http://www.socialinclusion.sa.gov.au/page.php?id=27
........................

I'd like to add to this that I rang in crisis the CFS assoc about a month ago for emotional support and desperate due to me situation.. and asked them what are they doing to help change things.. and the reply I got was that I need to be patient and things will change with time as more doctors nowdays know about CFS then did in the past.

told I just need to be patient... Ive been dealing with gov discrimination and the discrimination now of doctors and others to do with this illness for 14 years. I choose and went to jail for a month as I couldnt feed myself well and was going hungry so wanted to go to jail as it was the only way I saw out of my problems.. I still cant always cook for myself... and the person at the org just tells me I need to "just be patient". He/she obviously isnt having trouble just feeding himself and has never feared for his life with this illness.
(He was a nice person but obviously just didnt understand how serious this condition is in some of us. I truely believe that if I get bad again, I could die, if it wasnt for my children living with me in the past when I was worst.. I would of died. So Im in constant fear of I may get bad again knowing I cant look after myself).

I really hope the org reads this.. they should be ashamed of themselves for doing nothing when they could of hugely done something to help support us all. NO ONE should be in the situation some of us are in Sth Australia .. and only change at very high levels can change this for us. This should of been a top priority thing even if the only thing which was done for the year at the org level.

I am also from Australia but another state to South Australia. One thing I do know about the South Australain Society is that it gets damn all help from the gov with funding and most work is done by vounteers. I would suggest to the two posters above that they would be better to be pro active, and actually do something like assist the Society or even set up their own. I wonder if either of them are even members of the Society. It seems they expect people who are in a similar health predicament to themselves to do something for them, whilst they do nothing except complain.

Ginahgulla

 

[Mary Poppins]

I think that's an unfair and untrue assumption, Ginahgulla.

I notice this is your first post on PR. Have you read the forum posting rules? Found here http://forums.phoenixrising.me/misc.php?do=showrules

You'd benefit from reading them, I feel.

 

[taniaaust1]

I am also from Australia but another state to South Australia. One thing I do know about the South Australain Society is that it gets damn all help from the gov with funding and most work is done by vounteers. I would suggest to the two posters above that they would be better to be pro active, and actually do something like assist the Society or even set up their own. I wonder if either of them are even members of the Society. It seems they expect people who are in a similar health predicament to themselves to do something for them, whilst they do nothing except complain.

Ginahgulla

Nods.. I do know that they dont get well funded and are run by volunteers. Unfortunately they wont take me as a volunteer as I cant guarantee my reliablity.. and they will only take reliable volunteers. I arent one at all who just sits back and complains..but actually do a lot for us. I also once went into see them about volunteering for them thou i was so dreadfully ill myself.. that is why I know I cant help them as I was told one needs to be able to be reliable.

On the occassion I did that and went into their office to offer myself as a volunteer and was told that.. unfortunately I crashed on leaving their office to the degree my car got stuck in a public car park and I was unable to drive home (I dont now drive..but I can use online and if they decide to allow me to help them in some way and tell me what they want done.. I'd try to do it!!).

Im frustrated as I arent allowed to help them and then things like this thing not done or supported by the society. If they HELP the government realise more of the issues we are facing with our illness.. maybe we would get more funding.

I AM member of the SA society..so they do get money from me (their membership fee isnt much and I do appreciate that, they do not make profit out of their members)..

You tell me truely what more can I do for them if they dont want the help of those who have this so bad we cant be reliable??? (I'd love to be doing some thing for them). I was highly disappointed when I wanted to do something for our society but are seen as too unwell to be helping in anyway.

Anyway.. Im just making it clear I arent just sitting back and complaining and that is the position Ive been put in as I explained above.
I'd love to be doing more for them!! If the society sees this and has changed its mind and would like my help in some way even if I cant be reliable (I was kind of upset when i got told it only wanted reliable volunteers when I went into the office to enquire about volunteering).. please pm me.

 

[taniaaust1]

I am also from Australia but another state to South Australia. One thing I do know about the South Australain Society is that it gets damn all help from the gov with funding and most work is done by vounteers. I would suggest to the two posters above that they would be better to be pro active, and actually do something like assist the Society or even set up their own. I wonder if either of them are even members of the Society. It seems they expect people who are in a similar health predicament to themselves to do something for them, whilst they do nothing except complain.

Ginahgulla

I'll try again.. my post just vanished.. and YES i AM a member of the SA CFS society. I do not just sit back and complain. I do a lot for ME/CFS myself as I said thou Im mostly housebound.. I even went to one of the gov. investigation meetings and actually publically spoke.. while trying to bring change. I dont know how anyone could accuse me of just being a complainer.. Im a doer as much as I can do..

and Im only complaining as hopefully this will cause things to change as I hope next time something as important as this which could of helped us all maybe even more had our org been involved wont be left without input into it.

I want to also point out to you that I actually have been down to the SA CFS org (before they moved and at the time was situated right in the city) and voluteered myself as I wanted to help them but I was told they only wanted RELIABLE volunteers so they didnt want my help!! I cant promise to be reliable with anything as I just cant be.

That trip to their office to offer to volunteer to them resulted in my car being stuck in a public carpark and someone having to come and rescue me as that had me nearly collapse and my brain/ability to think got so bad that I got stuck in the car park as I couldnt work out how to work a ticket machine to get out.. so ended up breaking the boom gates to try to leave before I went unconsicous.. which then ended up with security there and them almost calling the police cause I broke something in my attempt to urgency get home. (I wrote about all that here when it occurred). That is how much effort I go to to try to change things and offer my services. I feel offended that you accuse me as being just a complainer when I do everything possible to try to change our situation and DO support the SA CFS society.

I was upset actually (felt rejected) when I got told they didnt want my help due to I cant be reliable as I have this illness badly. I really did want to be doing something to help them.. I cant do much but it would of been great to have been accepted that I could be useful to them in some way. I left there emotionally feeling like I was completely useless as I cant even be accepted to volunteer anywhere either .
(I've also tried that in other orgs too but NO ONE will accept a unreliable volunteer for anything). If I could start up my own org to help ME I would do so

If they have changed their mind and if there is ANYTHING I can do for them in a volunteer capacity.. (not being able to drive now at all it would have to be from my computer). I still volunteer and they can pm me. I'd only be too glad to be being useful.

I can understand why they would say they only want reliable volunteeers. I do really appreciate what they do but as I said.. im sooo frustrated with such a lost opportunity. So you tell me what I can do when Im not accepted to even help my local CFS org? It kind of hurts I was told I wasnt able to help out there so you've really hit a sore point when you said why dont I help them.

I would of also tried to join their commitee?? (sorry Im having trouble with me words and dont know if that is the right word.. something came in post about it the other day) etc as I think some with severe ME should be a part of the decision making process etc of our orgs and not just the less severe group who often dont really have a good understanding what those who have this more severe are facing.

Thing is the form said one had to ATTEND so many meetings per year or something along those lines if I applied.. I could only attend if the meetings for the org meetings were online or if it was arranged for me to get there in some way as I cant catch public transport due to my issues with perfume and I dont have a carer or someone to take me, I dont even often have someone to take me to medical appointments. Id really like so much to do that and hence then be helping us all more.

I want to help the local org so much ..so your post due to what has happened and my help being rejected is a real kick in the teeth.

Your post is just another example of how us who are more severe.. are being so little understand and unfairly judged by those who arent understanding this patient group as well. We want our voices heard too and what our needs met.

Is there a way our ME/CFS societies could be involving those who have severe ME more? Somehow we must be still be useful. (I just cannot see myself as being entirely useless).

 

[taniaaust1]

It's unfortunate, isn't it Tan? I will say this though, 'social inclusion' has been a human services buzz word for about 2 years now. It's highly fashionable to be seen to be doing things to maximise 'social inclusion'; the thing is, most people don't really know what it is or how to achieve it as an outcome.

Thanks for posting this, and also thanks for the work you've done in highlighting the challenges experienced by us. You're a bit of a superstar

"Social Inclusion" seems like a silly thing for the government to be calling that investigation as its far more then just being included in society.. social inclusion sounds like something which is just for people not to be lonely.

It was a investigation into the disability situation around if suitable support services were available and into the areas disability is discriminated against etc. etc. It basically covered ALL areas of problems in disability and what needed change.

Different illnesses have different areas where they will strike issues when it comes to their disabilities. eg a blind person may have issues with a council due to poor footpaths and a ME person can have more issues with our centrelinks with the process which goes on there with disability assessments which dont cater for illnesses in which are up and down so much, a deaf people will have other issues.