#6
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(08-11-2011, 08:38 PM)corinne Wrote: i think respite varies in different councils dallas1, when matt was under childrens services we got 42 nights a year and we have the same he is 18 it all falls down to where the councils put their money basically. for most things i could move 5 miles down the road and get a lot more support as its a different council.

tbh even if Louise had cctv by the time she saw lucie had stopped breathing and got downstairs and into the room it could be too late its not like she is in the next room (and running downstairs when you half asleep is dangerous anyway i know Smile)

have you tried going over their head Louise? try threatening with local radio or newspaper (the threat is usually enough) at the end of the day even if they put the referral in you would still have to be interviewed by dfg people who make the final decision. we have asked our social worker to refer for a driveway as matt when we asked when he was a child was told he wasnt disabled. he has said we have only got a slight shot of getting it but he has still supported us

Corrinne my daughter sleeps downstairs ,i know too well about running down to her half asleep -we do it every night.Dallas seizures can be life threatening .

She has a room downstairs as she cannot walk and is very heavy to carry.

cctv would solve the problem .
#7
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That is terrible, We had the ot from the council come out in jan about a dfg grant and still waiting to hear. All we wanted was a downstairs toilet put in.
#8
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Lucie has a tracheostomy and as a result i could claim 24 hour care for her. Is is very much dependent on area, i work for Bupa homehealth and i look after children with 24 hour packages, but am friends with someone from Lucies support group who also has a trachie but he only gets 5 nights a week. I dont claim for 24 hour care as i feel that we dont need the support as much as some of the other families who need support as we have been very lucky with our support network, and also other than the trachie lucie has no additional support needs and has no mental difficulties.
I am not putting Lucies privacy above her saftly, Lucie is currently sleeping in our bedroom as i feel it is unsafe dfor Lucie to be so far away from us. i have asked for the grant so that Lucie is in the next room as opposed to down the stairs along the corridor and around the corner.
I dont want Lucie to feel that she is always being watched, she is entitled to having privacy as much as you or me, how would you feel knowing that someone was watching you all the time? Also Lucie has friends sleep over as she cannot sleep at theirs and we are worried about the reaction from the parents when their children go home saying that we watched them sleep all night on a camera.
My doctor and peadiatrician have both agreed to support our application, our GP has even mentioned in her letter that we dont ask for any other support and we both work full time and she feels that we are doing this for the right reasons especailly taking Lucies privacy into account. Thanks corrine i will try threatening! Just wish we didnt all have to fight for things which will make our childrens lives easier, we have to do more for our children on a daily basis ye we're expected to be left with enough energy to fight the peaople who are supposed to be helping!


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