"pam" <[log in to unmask]> a écrit dans le message de
news:007901c49ba1$0c806ec0$0c0110ac@pamelallbmpn7i...
> I think wake staff might mean that your overnight attendant stays awake
all
> night in case you need help. People who work overnight and stay awake are
> paid more than those who can sleep during the night - rightly so, but
this
> is an added expense if you're paying out of pocket.
>



OK. That's what I thought. Still makes me wonder why a person with CP would
really NEED wake staff? I see its use for people who have breathing
difficulties (or a person on a respirator or having some other grave
illness), for instance, because staff might need to ressuscitate them ASAP,
but I wonder why a person with CP would really need that. OTOH, I could see
why a person with CP or other similar physical handicap might need to have
someone around who might be sleeping, but who could still react on a
relatively short notice if you ring a bell, for instance.

Which makes me wonder, Kathy Jo, whether your needs have been correctly
assessed. There are two potential situations that I think of:
- Having someone around, awake 24 hours/day makes you _feel_ more
comfortable, but is not really necessary. IOW, if you were alone a few
hours a day, you would need to learn to rely on yourself. In that way,
weaning out the support would be great for your sanity.
- Your parents and your case workers are trying to make sure you remain
dependent, that you come into a full-time centre, etc. by convincing you
(and eachother) that you really can't be on your own, that you need to be
kept on leash like a dog, etc.

Obviously I don't know you, I haven't met you and I haven't seen how you
move around. But I have two good friends with fairly severe movement
limitations who cope very well indeed with 2-4 hours per day of support. It
takes a certain amount of organisation and planning, but it can be done.

Another thought: 2-3 days ago, you were talking about a centre in another
town. I don't know the centre, nor your location vs that of your parents'
and job, but moving in a different city might be a way to cut links
"diplomatically" with your parents. I mean if you move into a centre 2 km
away from home, your parents could drop in often; but if you move 100 km
away, they won't drop in too often and you'll be able to live without their
clout.


--

Michel Gagnon