Re: Amelie and the lift saga!!!

February 21, 2006

Dear Flo Kim and all

I loved it especially Flo go Flo!!

Your right I think anyway, they phoned me this evening to book

another visit and bring some man, to look at the build of the

property, so I quickly dropped in that none of my charge family seem

to need lifts etc, and so why do i need my house adapting this

severely??

She said well amelie is very sick and too young really to assess but

my OT is pushing for the bedroom, becasue she feels she is failing

us as a family in that amelie needs better sleeping equipment and

they cant fit anything in the tiny space in our room, so bless her

she is pushing for us, the trouble is like flo said its all or

nothing , she said tell me when ever if you dont want to continue

with the assessment and we will go away!!

So i will go ahead with the next visit and talk to the guy about the

whole building, but I know I dont want a lift installed so I feel as

though we will have to pull out and that will have achieved nothing

and Amelie will end up on the floor when she gets too long for the

cot!!

fingers crossed i will print the sense stuff for the OT that Flo

suggested and see what they say next.

lol everyone Lesley

ps amelie still well maybe home tomorrow they want her o2

requiremnets down to 1 litre before she can go home.

> >>

> >> Hi all

> >>

> >> Did all the charge children start off very floppy?? Amelie is

> >> rocking side to side and pushing her bum up a lttle bit like the

> >> crab position, but she doesnt want to weight bear on her legs at

> >> all, although she kicks them about like crazy when sat in her

chair.

> >>

> >> I am amazed that no one has a lift or elevator, I think they are

> >> trying to say to me that if they fund her bedroom,the

conditions are

> >> they have to do the whole hog, she even said every door frame

must

> >> be a certain size and the whole house would have to be done, I

kept

> >> saying charge kids do walk they are just delayed at walking.

> >>

> >> I need to go back to the OT and speak about this ASAP, if its

part

> >> of the terms and conditions then we need to say forget it and

> >> manage, the trouble is she needs the next size up cot and we

cant

> >> fit it in our room. so its becoming a serious catch 22.

> >>

> >> Amelie may be allowed home tomorrow if her sats are stable

> >> tonight..fingers crossed.

> >>

> >> Flo if your tuned in does have a lift to go upstairs.?

> >>

> >> lol Lesley

> >>

> >

February 21, 2006

Lesley,

Please tell them that it is not that you don't want them to continue the

assessment, it is simply that at this point you do not think it necessary to

install a lift that may turn out to be unused anyway and that statistics

suggest that Amelie may not need one in the future. It is great that the OT

is pushing for the bedroom but does it really have to come as a total

package? You are not disagreeing about her needs in relation to the

bedroom, just in relation to the lift, and yes, she may be too small and too

sick to assess accurately, so why assume the worst in terms of her future

ability? Is all or nothing the policy of your Local Authority in relation

to the Disabled Facilities Grant? Or is it that you can only apply for the

grant once and they are trying to cover all angles just in case? They

cannot predict what the future will bring. It is all too puzzling.

Lesley, is there an independent disability advise or advocacy group near you

who can advise on this matter? You have too much on your plate to be

dealing with this alone. If you get the urge to tell them to go away

forever and take their rotten assessment with them, please adjust it to you

need to think further about this and you will contact them shortly. Also,

if you get the urge to just agree to everything, do the same. That will

give you some breathing space to research a little about the conditions of

the Grant etc. We were going to apply for it for a downstairs toilet some

time ago, the OT agreed necessity which by implication means that

would have problems independently negotiating the stairs but there was

nothing else about any conditions.

Hope Amelie does come home tomorrow. There is nowhere better for her than

among her family where she can have the flexibility to develop and feel the

love of all of you. And there is nowhere better for you to fight your

battles from either so all round it would be a winner.

Flo

February 21, 2006

>

> i know im ramblin on but i dotn need a head rest and you dont need

> a lift LOL hugs ellen

>

> Well said Ellen! Services need to listen to service users and their

> families.

Flo

February 21, 2006

>

> i know im ramblin on but i dotn need a head rest and you dont need

> a lift LOL hugs ellen

>

> Well said Ellen! Services need to listen to service users and their

> families.

Flo

February 22, 2006

hoping you get her home tomorrwo flos right if you say no to soemthign they

wont help you in he futre its like they are thinking well u dont need us so

we wont help yu wonder if you could just get second opions from hosptial ots

they are great resourses i have used the hosptial one a few times acuraly

the school one well amelies not at school LOL but my school one in primary

had me with this special bath thing acutaly not disimlare to jesses she was

with the independant living centre do you have soemthign liek them ther e or

i know you said shes got hearing problems maybe the ent might have ots or

vision peoople might to ive used all these and they are quite useful just

thoughts think mum says was an ot who got me liking bright colours when i

was about that age so they do have good stuff love you xxxxxxxx ellen

>

> Lesley,

> Please tell them that it is not that you don't want them to continue the

> assessment, it is simply that at this point you do not think it necessary

> to

> install a lift that may turn out to be unused anyway and that statistics

> suggest that Amelie may not need one in the future. It is great that the

> OT

> is pushing for the bedroom but does it really have to come as a total

> package? You are not disagreeing about her needs in relation to the

> bedroom, just in relation to the lift, and yes, she may be too small and

> too

> sick to assess accurately, so why assume the worst in terms of her future

> ability? Is all or nothing the policy of your Local Authority in relation

> to the Disabled Facilities Grant? Or is it that you can only apply for

> the

> grant once and they are trying to cover all angles just in case? They

> cannot predict what the future will bring. It is all too puzzling.

>

> Lesley, is there an independent disability advise or advocacy group near

> you

> who can advise on this matter? You have too much on your plate to be

> dealing with this alone. If you get the urge to tell them to go away

> forever and take their rotten assessment with them, please adjust it to

> you

> need to think further about this and you will contact them shortly. Also,

> if you get the urge to just agree to everything, do the same. That will

> give you some breathing space to research a little about the conditions

> of

> the Grant etc. We were going to apply for it for a downstairs toilet some

> time ago, the OT agreed necessity which by implication means that

> would have problems independently negotiating the stairs but there was

> nothing else about any conditions.

>

> Hope Amelie does come home tomorrow. There is nowhere better for her than

> among her family where she can have the flexibility to develop and feel

> the

> love of all of you. And there is nowhere better for you to fight your

> battles from either so all round it would be a winner.

>

> Flo

>

February 22, 2006