illness and disability

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ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/1/2009 12:02 AM (GMT -7)   
There is a lot of talk here (Australia) this week about reforming disability services, so that people can get the support they need when they need it, instead of having to work through a lot of bureaucrats and extended waiting lists.

Sounds good, doesn't it?

Anyway, I listened to the press conference where they were announcing all this, and the man gave the impression that these reforms would apply to people with catastrophic injuries, to people born with more traditional disabilities, and to people with mental illness.

??

Have I missed something? I know that mental illness is debilitating, but so are a raft of other illnesses. Surely it's the severity of the illness rather than the type of illness that determines how disabled someone is? For example, someone with mild bipolar might only be mildly disabled, whereas someone with severe Crohn's / lupus / RA etc could be truly incapacitated. Someone with severe bipolar might be really handicapped, whereas someone with mild Crohn's might be able to function in society unassisted.

I feel like I should write to the government and ask them to include severe illnesses - or at least auto-immune illnesses - in their legislation. What do you think? Am I missing something? Is there solid reasoning in the policy as it is, or are they just discriminating against sick people *again*?

Just as a bit of context for the overseas folks, the sick people are ALREADY slipping through the cracks here. Services are provided to help the mentally ill; services are provided to help the disabled; services are provided to help the elderly; but there is hardly ANYTHING for young sick people, no matter how incapacitated they are.

Anyway, what do you all think? Are they being reasonable, or are they being discriminatory?

Ivy.
Co-Moderator Crohn's Forum.


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 4/1/2009 5:08 AM (GMT -7)   
I think I have seen the ideology that creates this ethos, Ivy. There was a Government report on this a couple of decades ago, set in a time of "Get these skivers back to work!" enthusiasm.
eyes The idea in the background is that younger people have a larger social network ( shakehead), have more resilience (until it runs out of course) and most importantly of all from a funding point of view, have parents and siblings to look after them, thus freeing up resources for the older, more socially isolated, less capable patients. Of course, these people very likely got to be that way from neglect in their earlier years, when given resources they would have had a fighting chance of doing something with their lives educationally, socially and careerwise, thus contributing to the economy instead of becoming a net drain. You'd think an economist would have worked that out by now, but economists don't tend to exist in the twilight world of the chronically subsisting ill, do they ? And politicians never do anything long term; history is nothing but a catalogue of political problems left to simmer for thirty years by the only people who had any chance to nip them in the bud.
Politicians will talk of getting tough on benefit cheats to one audience, talk of improving benefits to another group, and talk privately of scrapping benefits to each other. What a politician says is in itself worthless as a promise, it is the context and the audience that defines whether the words are a true indicator. Bankers and political clubs tend to hear the truth as truly believed - the press and the public hear what will keep them onside. Ignore the headlines, ignore the bits of government papers that they release to the press. Read the whole paper - if you can suffer boredom that much ! - and you will usually find that the true picture emerges. The devil as always is in the detail; if you are lucky, they have debated the matter properly, there is no big hidden agenda making it all a foregone conclusion, and you will find that they have mentioned those who don't fit into the more socially acceptable tickboxes, and there is, in theory at least, provision for them.
But there is every chance that unless there is a pressure group specifically having a publicity campaign, doing press releases saying, "Look at Cathy, aged 21 and has no help because.." there will just be no resources. An invisible needs group is just left standing behind the door when resources are handed out. And as with chronic fatigue sufferers, young people who are chronically ill are innately disadvantaged when it comes to campaigning.
Is omission discriminatory ? Perhaps not purposely so, but in effect it is. yeah
eyes IMHO ! wink

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/1/2009 3:03 PM (GMT -7)   
Sno, this will probably appall you, but the UK is the major inspiration for these reforms here...

There's no government paper as yet. In true government fashion they've had the big press conference announcing that they're going to start thinking about it :-/ but there's nothing solid for the public to examine yet.

I absolutely agree with everything else you said. I do feel that sick people are one of the last frontiers in access & equity issues. I know that the other groups haven't received full equity yet, but at least they have been recognised by those in power...

Ivy.
Co-Moderator Crohn's Forum.


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 4/1/2009 7:06 PM (GMT -7)   
Man... :(... My post didn't get through (I was on earlier today, and I got this message... something about the server or somethin'...)

Oh well...

I was trying to say that I agree with you, Ivy.... Chronically ill people do tend to get the short end of the stick... Especially young people... (For the exact reasons, Sno mentioned... Which is funny because not every young person has parents looking after them... and some people have been through so much crap already... Why put them through more?)

Anyway... I also believe there are some types of illnesses that can be more severe than others... Take schizophrenia, for instance.... As far as mental illnesses go, I believe that's probably one of the worst...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/2/2009 4:15 AM (GMT -7)   
Yep, I agree, Celey.

It seems so blindingly obvious. I don't know why the people in power don't see it... unless they regard chronic illness as a can of worms that they daren't open - there are so many of us who are sick and struggling with these illnesses - so consciously avert their eyes to avoid it.

Ivy.
Co-Moderator Crohn's Forum.


fimk
Regular Member


Date Joined Apr 2009
Total Posts : 51
   Posted 4/2/2009 6:33 AM (GMT -7)   
Hi just joined the forum to add my thoughts. I am 57, I have had CD for over 30 years. When I first got sick none of the local doctors knew what it was therefore the disease progresses unchecked. I was so weak that I was unable to walk or do much of anything else. I finally found a doc in chicago that knew what it was and I began to get some relief. My point is that for 2 years I was totally unable to work and the bills kept coming. I appied for disabilty but was denied, appealled and denied agian. I sold every thing I ownwed and borrowed money where I could. Now after all these years and after marriage to a woman with a good income, they tell me that I qualify for disability. I don't need it now!
The problem with disability is that they want to classify people as totally disabled permanently. What needs to happen is temporairy disability to get people back on their feet again. Like most people, when I first got sick is when I needed the help the most. I was rejected because I was young and even though I was deathly ill, I had the potential to make my own way in the future. Now I am older and my earning potential is not as good so I qualify for disability. That is the way the government approaches it!

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/2/2009 3:10 PM (GMT -7)   
Fimk, I absolutely agree with you. (And welcome! It's nice to meet you).

I have had a similar experience: have spent much of the last ten years bed-ridden or housebound and have desperately needed help, but kept falling through the cracks in the system. Finally I was put in contact with a group who agreed that yes, I did qualify for help..... but I can't access any of that help, because there's no funding for it :-/.

You are absolutely right: someone really does need to acknowledge the relapsing and remitting nature of this disease, and provide acknowledgement, help and support accordingly.

I'm glad to know that you are doing better than you were 30 years ago.

Ivy.
Co-Moderator Crohn's Forum.

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