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10:21am 10/12/2008
mood: hopeful
by school I mean what we in the uk refer to as university

In short I have to do a project on a 'life line' of either myself or a fictional case study, I have chosen the later as don't want my personal life to be too exposed

So going to have a wooden figure on one arm labels attached given by society ie crazy, mad, stupid, thick, attention seeker etc and other labels given by the individual

Could I be cheeky and ask for your idea's for either side, just let me know which it is for.

I need labels in terms of health (all forms ie mental, physical, learning disability etc) gender and sexuality, race, religion, heritage, etc, etc

Any futher info needed please ask away

Photo of project to be posted once finished probably monday at latest. As is due on wednwsday nwxt week!

Cross posted
(carers argh) Please think SHORT! 
10:14am 19/06/2008
mood: aggravated
I have this carer now whose actually quite good. She has a nursing degree, she's motivated and she knows what she's about.

But I'm 4'4", and these days I use my wheelchair around the house anyway, so I genuinely need things down where I can reach them. She's only 5'5" anyway. I've had any number of carers who were much taller than she is and I haven't had this problem with them before.

But this girl puts things not only above my head, but above hers, without even thinking about consulting me. So then I only discover these things by the time she's gone for the day -- let alone the weekend -- and I can't do anything about it on my own.

I said something about it one day, and not only did she not understand, but she laughed it off and then started mocking me about how hard it is for her to be hunched down all of the time. I get laughing something off, but when someone is trying to give you feedback that is important to them, it isn't the time.

06:54pm 31/01/2008
  Does anybody know a cure for emergency support workers who do not understand the phrase "Please start with item 1 in the care plan, then do the next thing, then the next thing, and so on"?

Why do people who don't know me persist in "What do you want for dinner?" when I ask them over and over to do stuff IN THE ORDER IT'S WRITTEN DOWN???? It's written down in that order for a good reason, guys. Really good reasons, in fact.

I hate dealing with emergency staff.

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Can they do this to me? 
05:09pm 03/09/2007
  Update: Thanks, but it turns out the carer in question was quite wrong, and they have no power to do any such thing to me against my will.

Hi, I need help because I'm terrified.

I have an in-home care provider three days a week, and today we got into an argument. I have been having problems with care providers from this service, but I've always chalked it up pretty much to personality differences.

Today this care provider went ballistic on me and started talking about how she was my "last hope" with this service and implied that if things didn't work out that they were going to put me in a nursing home, against my will or not.

I live in Washington State. Part of this threat has to do with wound care on my posterior due to pressure sores. I have a couple of questions, obviously. Can they do this to me against my will? What do I have to do to give power-of-attorney to one of my siblings and make absolutely sure that this company isn't considered my legal guardian?

Thank you in advance for all advice.
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03:47pm 23/01/2007
  I'm so glad I found this community! I'm set to become poster number one if things don't change here ASAP!

I'm 33, retired, and have fsh muscular dystrophy. I hired a service that sends a caregiver out every afternoon. Currently, I have two people assigned to me, one on Mon/Thur/Fri, and one of Tue/Wed. Tue/Wed lady is great, I really like her. But Mon/Thur/Fri lady bugs me to no end. She's competent (barely), but she's annoying, ignorant, dumb, and really, really annoying. Unfortunately, I didn't feel that not liking someone was a valid reason to fire them. Now she's complaining about her back hurting her too much to transfer me. Transferring me is the most important part of her job. I asked the service not to send her out anymore, and she asked the service not to be sent, but the service claims they're too swamped and can't send anyone else out at the moment.

I'm so frustrated! It's aggravating having to hire strangers to come into my home to take care of me. It feels like an invasion of privacy sometimes. But I can't be by myself all afternoon while my husband works. It's a necessary evil.

But it's even more frustrating when I don't get along with the caregiver. How do you deal with it when you get a caregiver you don't like? Do you suck it up and deal with it? Or do you ask the service to replace them? I'm not talking about a caregiver who can't do the job, jsut someone who annoys you. They complain about what you watch on tv, or have a stupid laugh, or ask stupid questions, or spout opinions regarding current events you disagree with, or all of the above, and just rub you the wrong way. Is that a valid reason for firing them (after all, you have to put up with them in your home)? Or does that make you a picky jerk? What are your opinions?
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New Community Invitation 
01:11pm 23/01/2007
  Cross posted everywhere

Hello everyone. My name is Andrea. I am a mother to a Deaf child, sister to someone who has Cerebral Palsy and is a FIERCE disability right activist, and I myself have ADHD. I am also a Student at Antioch University Seattle in a BA completion program with a class assignment that I would love for you to be a part of. My class is centered around how individuals can use their personal stories to create social change.

For my project, I would like to gather stories of experiences of medical care from people in the disabilities community. I plan on creating a booklet or zine of related art, photography, and primarily your stories to then pass on to the University of Washington's department of disability studies ( http://depts.washington.edu/chdd/ ). It is my hope that by offering your experiences, future medical care providers will have a better understanding of their impact when working with future patients.

Because of the often sensitive nature of these stories, anonymous contributions would be more than welcome. I have set up an account for those who would like to add their stories anonymously. Please see the community for more information. Please also let me know if you have any additional ideas for the direction of this project.

This community is part of a six week project. It is my hope that well after the project itself is completed, the community will continue to be a place of support and sharing

Image Description: Banner with text that reads "A story for change. What is your story?" With the image of the disabled parking logo in yellow on black pavement with the word "Change" writen underneath. Beside the symbol is an open book with the text over it that reads "A community project for positive medical care."


For more information, visit our community page.

Hiring PCAs 
11:21pm 16/09/2006
  There is a great article here in Ragged Education about hiring and working with PCAs.

Do people here have things to add to it? How many do manage your own PCAs? Mine are done via an agency, there is no other option where I live. If I had the option, I would be unlikely to change, I think... the agency *has* to make sure that someone is here, and if I did my own managing then I would not have the safety net. I don't have people who I could call informally if nobody arrived and that would scare me - I could end up in hospital from the health effects of a missed shift.

OTOH, the agency does manage to eat half the total amount of money from the government for doing it...

Scholarships for the disabled 
10:00pm 14/09/2006
  I thought it might be a good idea to compile a database of scholarships for the disabled, focusing on college students but not exclusively so. If you would like to be apart of this, either to supply information or to receive the final file, look up this post title on creactiv_voice for further instructions.  
Are you American, disabled, and need help getting or getting training for a job? 
04:39pm 12/09/2006
mood: curious
Vocational Rehabilitation is the service intended to help you with just that. Here is where you can find your local office

If you have a problem with Vocational Rehabilitation Services, you can contact CAP or Client Assistance Program. Find out about what CAP is here . Im working on a state-by-state spreadsheet of CAP agencies, since those sites dont seem to provide such. If anyone can find one that does, please contact me.

Tell us about your experience with Vocational Rehabilitation or CAP at creactiv_voice

OR Creactivists Voice on Yahoo!

OR Creactivists Voice on MSN
Have you seen this? 
08:20pm 01/09/2006
  Evictions off campus due to suicide attempts OR admission to a hospital for depression

I was outraged when I did. The last thing a depressed student needs is to be immediately tossed onto the streets. Yes I understand that these colleges/universities may not have the resources nor the necessitity to build mental institutions on campus, but certainly they should be required to treat their fellow human beings with some measure of dignity, if not even a trace of compassion. I do not accept the premise that they are seeking whats in the students' best interests. I wonder if in fact they are serving their own, in seeking shelter for their insurance policies away from legal storms. The problem for them is that within the ADA the legal standard for individuals with disabilities is the most integrated policies possible, in concurrence with the standards specified by the individual's treatment providers. There are certain factors that need to be considered here, such as whether or not the students could be defined under the law as persons with disabilities, etc. Even if these institutions of learning are safe due to these specific circumstances, it seems they are building their campus policies on quicksand rather than modern legal ethics.
WRAP Program in Nashua NH 
10:13pm 31/07/2006
mood: giggly
cross-posted in disability, Vermont, and New Hampshire interest communities courtesy of creactiv_voice

WRAP Program in Nashua, NH

This round of the 6 week program has already started, and they recommend that you don't start in the middle. The next round is slated for late November of this year, so sign up now!

For more information and to get on the waiting list, email:

michael@ dbsanashua.org
Rate your local Vocational Rehabilitation Office at creactiv_voice 
12:13pm 29/07/2006
mood: crappy
Be heard at creactiv_voice
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12:14pm 02/05/2006
mood: chipper
My friend is also disabled. He has needed (and received) home care for a few yrs now. He will most likely have it for the rest of his life. There is no hiding from it. he problem is, he can't shake off the feeling that he is paying for his carers to be there. They could always terminate the contract, they aren't there helping him b/c they're his friends (although they've become close friends b/c they all get on & they have to see him so often) Do those of you w/ more complex disabilities feel like that? If yes, how do you cope w/ it?

I suppose abled friends do, or would, help their friend w/ things as much as they could, such as pouring beer down his/her throat in the pub, but it's hard to imagine why somebody abled would want to spend time doing everything for somebody disabled when they didn't have to, unless they were training to do nursing and/or care work, or had been a carer for somebody in the past.

*I'd appreciate comments on this, or maybe E Mail it to clairemuncaster@tiscali.co.uk, b/c I'll be deleting it soon. I don't like the idea of my friends care workers seeing it.
09:18pm 16/04/2006

I've just joined on the recommendation of the lovely rickybuchanan.

I've needed(and received) home care for a few years now, but about six months ago I started getting limited help with showers and dressing. I've also had some carers in for respite care to give my spouse a break.

It's a weird experience. Mostly they're okay, some make the experience easier than others but just occasionally they make me want to tear my hair out. Or their's. ;)

Anyway, nice to meet you all.
12:10am 07/03/2006
mood: aggravated
Well hello!

First I'd like to say, whoever thought of creating this community is a GENIUS. THANK YOU. It's a rather unique problem, we who have in-home care providers have, and I often feel odd bitching about it in my own journal, for fear of the "What are you bitching about? *I* don't have someone in *my* house mopping my floors for me!" reaction from some of my friends list. Which may or may not happen, but still... It's awkward to me.

So anyway. I'm Nicole, I live in Eastern WA, and I'm 31. I was born with Spina Bifida Mylomelinglocyl and am partially paralyzed from the waist down. I'm also only 4'4", so I have trouble with tall tasks in my home as well. After I burned my foot with a heating pad, a doctor of mine signed authorization papers so that I could get an in-home care provider back in 2002. It's been a rocky road ever since.

I'm VERY particular about the kind of help I want and don't want in my house.

I noticed that this community calls them "carers," and that's not a word I've heard used where I'm from. Is this a word specific to the U.K.?

On the 1st of March, I opened the door to a brand new carer, who, when I asked her when R. would be back, bruesquely informed me, "I'm your new person." My immediate inner monologue replied, "The hell you are." I mean, talk about shocking to find out that way that your carer has been changed on you! Better yet, I talked to the office manager and they don't have anyone else available for me for the time bieng. ARG.

And on that cranky note, I look forward to getting to know you all. ;)
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Sick carers 
01:47pm 10/01/2006
mood: crappy
My PCA came to work with a seriously bad back today. As it happens, I needed the shopping done that shift because there is NO food in the house.

But she is too sick to shop, she says, could it be done another day? What can I say that!?

So, no shopping done, and lunch is random cobbled together stuff that I don't like much... at least I am so sick with the heat-waves that I don't feel very hungry!

I am fucking furious, EVERYTHING has gone wrong today - missing meds, sick carer, she left early because she arrived early but didn't tell me she was early (I was asleep) so "Bye!" when I wanted stuff done... and it is waaaaaaay too hot today.

I hate everything! :(
Now maintained by 
10:59am 06/11/2005
  This community is now being maintained by rickybuchanan (I'd do the link thing but I don't know how too!). Thanks to everyone who offered to take it over.  
Taking over 
12:53pm 04/11/2005
  I no longer wish to run this community... if anyone wants to take it over please e-mail me (star_heartuk@yahoo.co.uk) otherwise I will delete it next tuesday  
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When you don't like a carer 
02:50pm 02/11/2005
mood: aggravated
I had a carer yesterday who came once a few weeks ago and apparently also a few months back but i don't remember her from then. When she came a few weeks ago I found her a bit difficult to deal with but not "omg don't send her again shes the worse carer ever" difficult.

Yesterday she turned up 30 mins early (if I had been working that afternoon I wouldn't have been home yet) and she asked what time i'd got home from work and when I said 3pm (I worked the morning shift plus a couple of extra hours) she commented that she had had a long break before coming to me and I was her last client of the day and she hated having breaks. I distinctly got the impression that she would have been on my doorstep at 3 if she had known I'd be in - Last time she came she was early and I told her that I don't get home until 4.30 at the earliest if I'm working afternoons so not to come that early again - and she said she remembered my saying that.

Also I asked her to put some washing on... she had just washed a load of dishes and left them on the draining board and then puts my clothes to wash, leaving teh wrapper from the washing powder tablets right next to/on top of the clean dishes. I didn't see that until after she left but UM, HELLO?! Washing powder is highly poisonous! Needless to say tonight's carer will have to rewash all of the dishes.

I rang my agency and said I'd found her rude. They told me it's not like her and so I felt like i had to add "Maybe I was having a bad day but that's what I thought." and other explanations and apologies. Then she asked if I'd prefer not to have that carer again and I said something along the lines of not unless they were really desperate and that I was REALLY SORRY to be causing such a problem.

I found it really hard to ring them and ask not to have her again and being told how shes normally someone people get on with DID NOT HELP

Damnit, I need a hug.
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If we have any arrangement - STICK TO IT! 
06:02pm 11/10/2005
  I am feeling a bit *("!& off with my care agency right now.

The agreement we have is that when my carers arrive they KNOCK on the door (because my doorbell is tempramental) and I let them in. If I don't answer the door the carers are supposed to try the door and if it is open (which it is when I'm at home) come in and call out to me. You know in case I didn't here the door or i've fallen or whatever. They are supposed to tell my carer to knock not ring the bell as it doesn't always work but this often gets ignored and pretty much the only ones who do are the ones I've told.

Today's carer rang the bell and it didn't work so she sat outside in her car and rang the office. They told her to wait 15 mins then put a note thru my door asking me to contact them and let them know if i am safe. thankfully I heard the note come thru the letter box and was able to get to the door quickly and shout to her to come back.

But what if I had have been stuck on the floor after a fall? I only have care visits once a day which is fine for my needs... I just can't believe they wouldn't try the door to see if it was open or ring me/my next of kin to check on me.

having to chase after her and finding she'd been sat outside for fifteen minutes while I'd been sat wondering where she was made me feel really stressy and bad. She told me that it wasn't my fault and I know that but it feels like it. ARGH!

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