Guest guest Posted February 19, 2006 Report Share Posted February 19, 2006 Dear Les!!!! What are they talking about! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2006 Report Share Posted February 19, 2006 Dear Les!!!! What are they talking about! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2006 Report Share Posted February 19, 2006 Dear Les!!!! What are they talking about! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2006 Report Share Posted February 19, 2006 Lesley, They think she needs on now??? She is still small enough for you to carry her. Give her time to learn she has been in and out of the hospital so much this last year she hasnt had time to learn much. I think I would wait. Good Luck Crystal and Eva > > Hi all > > My OT assessment for Amelie to have help to fund a bedroom is a > nightmare, about to reupt... > > they say the panel wont agree it without a lift being installed which > will take up half the budget and trash my house to install and fit, I > may even have to loose my dining area to accommodate it! > > QQQ how many of the charge kids need a system to get them up to > bed??????? > > Amelie does have hypotonia but she is improving very slowly, do you > think they think she will never be able to walk? > > I need statistics before my next visit to defend my refusal to have a > lift installed its crazy! > > thanks Lesx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2006 Report Share Posted February 19, 2006 Lesley, They think she needs on now??? She is still small enough for you to carry her. Give her time to learn she has been in and out of the hospital so much this last year she hasnt had time to learn much. I think I would wait. Good Luck Crystal and Eva > > Hi all > > My OT assessment for Amelie to have help to fund a bedroom is a > nightmare, about to reupt... > > they say the panel wont agree it without a lift being installed which > will take up half the budget and trash my house to install and fit, I > may even have to loose my dining area to accommodate it! > > QQQ how many of the charge kids need a system to get them up to > bed??????? > > Amelie does have hypotonia but she is improving very slowly, do you > think they think she will never be able to walk? > > I need statistics before my next visit to defend my refusal to have a > lift installed its crazy! > > thanks Lesx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2006 Report Share Posted February 19, 2006 Lesley, They think she needs on now??? She is still small enough for you to carry her. Give her time to learn she has been in and out of the hospital so much this last year she hasnt had time to learn much. I think I would wait. Good Luck Crystal and Eva > > Hi all > > My OT assessment for Amelie to have help to fund a bedroom is a > nightmare, about to reupt... > > they say the panel wont agree it without a lift being installed which > will take up half the budget and trash my house to install and fit, I > may even have to loose my dining area to accommodate it! > > QQQ how many of the charge kids need a system to get them up to > bed??????? > > Amelie does have hypotonia but she is improving very slowly, do you > think they think she will never be able to walk? > > I need statistics before my next visit to defend my refusal to have a > lift installed its crazy! > > thanks Lesx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Sorry-I had a premature " launching " of last message- besides being weird-I think they are saying that if U want to procure funds thru the OT dept. they would have to install this lift thingy-Maybe U could accomplish what U want thru respiratory or GI. But, other than that, I can't imagine why U would need a " lift-thingy " > > Hi all > > My OT assessment for Amelie to have help to fund a bedroom is a > nightmare, about to reupt... > > they say the panel wont agree it without a lift being installed which > will take up half the budget and trash my house to install and fit, I > may even have to loose my dining area to accommodate it! > > QQQ how many of the charge kids need a system to get them up to > bed??????? > > Amelie does have hypotonia but she is improving very slowly, do you > think they think she will never be able to walk? > > I need statistics before my next visit to defend my refusal to have a > lift installed its crazy! > > thanks Lesx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Sorry-I had a premature " launching " of last message- besides being weird-I think they are saying that if U want to procure funds thru the OT dept. they would have to install this lift thingy-Maybe U could accomplish what U want thru respiratory or GI. But, other than that, I can't imagine why U would need a " lift-thingy " > > Hi all > > My OT assessment for Amelie to have help to fund a bedroom is a > nightmare, about to reupt... > > they say the panel wont agree it without a lift being installed which > will take up half the budget and trash my house to install and fit, I > may even have to loose my dining area to accommodate it! > > QQQ how many of the charge kids need a system to get them up to > bed??????? > > Amelie does have hypotonia but she is improving very slowly, do you > think they think she will never be able to walk? > > I need statistics before my next visit to defend my refusal to have a > lift installed its crazy! > > thanks Lesx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Sorry-I had a premature " launching " of last message- besides being weird-I think they are saying that if U want to procure funds thru the OT dept. they would have to install this lift thingy-Maybe U could accomplish what U want thru respiratory or GI. But, other than that, I can't imagine why U would need a " lift-thingy " > > Hi all > > My OT assessment for Amelie to have help to fund a bedroom is a > nightmare, about to reupt... > > they say the panel wont agree it without a lift being installed which > will take up half the budget and trash my house to install and fit, I > may even have to loose my dining area to accommodate it! > > QQQ how many of the charge kids need a system to get them up to > bed??????? > > Amelie does have hypotonia but she is improving very slowly, do you > think they think she will never be able to walk? > > I need statistics before my next visit to defend my refusal to have a > lift installed its crazy! > > thanks Lesx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 I cannot imagine why she would not be able to walk! Most kids with CHARGE walk, although like everything CHARGE there is that end of the spectrum where they don't. Kim > Hi all > > My OT assessment for Amelie to have help to fund a bedroom is a > nightmare, about to reupt... > > they say the panel wont agree it without a lift being installed which > will take up half the budget and trash my house to install and fit, I > may even have to loose my dining area to accommodate it! > > QQQ how many of the charge kids need a system to get them up to > bed??????? > > Amelie does have hypotonia but she is improving very slowly, do you > think they think she will never be able to walk? > > I need statistics before my next visit to defend my refusal to have a > lift installed its crazy! > > thanks Lesx > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 I cannot imagine why she would not be able to walk! Most kids with CHARGE walk, although like everything CHARGE there is that end of the spectrum where they don't. Kim > Hi all > > My OT assessment for Amelie to have help to fund a bedroom is a > nightmare, about to reupt... > > they say the panel wont agree it without a lift being installed which > will take up half the budget and trash my house to install and fit, I > may even have to loose my dining area to accommodate it! > > QQQ how many of the charge kids need a system to get them up to > bed??????? > > Amelie does have hypotonia but she is improving very slowly, do you > think they think she will never be able to walk? > > I need statistics before my next visit to defend my refusal to have a > lift installed its crazy! > > thanks Lesx > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 i agree with kim now if it was somethitng like cp or spina vifita that would be a very different story knowing people from school with both these and knowing heaps of chargers i know more of those kids that cant walk than chargers thats my take on it anyway > > I cannot imagine why she would not be able to walk! Most kids with CHARGE > walk, although like everything CHARGE there is that end of the spectrum > where they don't. > > Kim > > > > > > Hi all > > > > My OT assessment for Amelie to have help to fund a bedroom is a > > nightmare, about to reupt... > > > > they say the panel wont agree it without a lift being installed which > > will take up half the budget and trash my house to install and fit, I > > may even have to loose my dining area to accommodate it! > > > > QQQ how many of the charge kids need a system to get them up to > > bed??????? > > > > Amelie does have hypotonia but she is improving very slowly, do you > > think they think she will never be able to walk? > > > > I need statistics before my next visit to defend my refusal to have a > > lift installed its crazy! > > > > thanks Lesx > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support groups does not constitute membership > in the > > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org > > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 That's ridiculous. Why do they want to waste public money on something which is it not proved is a current need and is unlikely to be a future need based on the prognosis for Charge children. I think you need to ask for another OT - one who has done some research on Charge, or get a Paed. report sent to the panal. Talk to Flo she might know what to do being a SW herself! is > > Hi all > > My OT assessment for Amelie to have help to fund a bedroom is a > nightmare, about to reupt... > > they say the panel wont agree it without a lift being installed which > will take up half the budget and trash my house to install and fit, I > may even have to loose my dining area to accommodate it! > > QQQ how many of the charge kids need a system to get them up to > bed??????? > > Amelie does have hypotonia but she is improving very slowly, do you > think they think she will never be able to walk? > > I need statistics before my next visit to defend my refusal to have a > lift installed its crazy! > > thanks Lesx > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Lesley, We don't have any adaptions to our home for Jack. He didn't weight bear for the longest time and only started walking when he was 4yrs and 4mths old and even then he was very, very cautious and held onto furniture, walls and whoever was close by. He goes up and down the stairs himself now but still holds onto the rail with both hands and goes up and down putting both feet on one step if you know what I mean. He still can't walk up or down stairs the same way as we do. When he first started going up and down stairs he would crawl up them and bump down them on his bottom.He still does this when he's tired !!! We are currently waiting for an OT assessment from Social Services to see if they can help with adapting our bathroom for Jack. We have the tiniest bathroom with just a shower over the bath. Jack can't get in or out on his own and I can't see him being able to do so for quite some time. We are going to take the bath out and put a shower cubicle in which would give him a bit of independance. Grants here in Scotland are still means tested for disabled children so we'll have to see if we get any help with the cost. I'm not holding my breath waiting though I think the law changed in England and Wales last year so it doesn't matter how much income the parents have when assessing grants for adapting the home. We are actually having someone come to see us tomorrow night from the Children's Disabilities Team to see if there is anything they can offer us regarding respite etc. Jack's almost 9 now but better late than never I suppose. We don't want overnight respite but some help during school holidays would be great. Good luck with the OT assessment. They must be able to compromise surely ?? Maybe they think that it will put you off and you'll say 'oh forget it' but you stick to your guns. Hugs Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Lesley, We don't have any adaptions to our home for Jack. He didn't weight bear for the longest time and only started walking when he was 4yrs and 4mths old and even then he was very, very cautious and held onto furniture, walls and whoever was close by. He goes up and down the stairs himself now but still holds onto the rail with both hands and goes up and down putting both feet on one step if you know what I mean. He still can't walk up or down stairs the same way as we do. When he first started going up and down stairs he would crawl up them and bump down them on his bottom.He still does this when he's tired !!! We are currently waiting for an OT assessment from Social Services to see if they can help with adapting our bathroom for Jack. We have the tiniest bathroom with just a shower over the bath. Jack can't get in or out on his own and I can't see him being able to do so for quite some time. We are going to take the bath out and put a shower cubicle in which would give him a bit of independance. Grants here in Scotland are still means tested for disabled children so we'll have to see if we get any help with the cost. I'm not holding my breath waiting though I think the law changed in England and Wales last year so it doesn't matter how much income the parents have when assessing grants for adapting the home. We are actually having someone come to see us tomorrow night from the Children's Disabilities Team to see if there is anything they can offer us regarding respite etc. Jack's almost 9 now but better late than never I suppose. We don't want overnight respite but some help during school holidays would be great. Good luck with the OT assessment. They must be able to compromise surely ?? Maybe they think that it will put you off and you'll say 'oh forget it' but you stick to your guns. Hugs Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 thanks Ellen... how are you doing this week, notnhad chance to chat to you for ages lol Lesleyxxx ameliexx > > > > > Hi all > > > > > > My OT assessment for Amelie to have help to fund a bedroom is a > > > nightmare, about to reupt... > > > > > > they say the panel wont agree it without a lift being installed which > > > will take up half the budget and trash my house to install and fit, I > > > may even have to loose my dining area to accommodate it! > > > > > > QQQ how many of the charge kids need a system to get them up to > > > bed??????? > > > > > > Amelie does have hypotonia but she is improving very slowly, do you > > > think they think she will never be able to walk? > > > > > > I need statistics before my next visit to defend my refusal to have a > > > lift installed its crazy! > > > > > > thanks Lesx > > > > > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > > http://www.imagestation.com/album/?id=2117043995 > > > > > > Membership of this email support groups does not constitute membership > > in the > > > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > > > For information about the CHARGE Syndrome > > > Foundation or to become a member (and get the newsletter), > > > please contact marion@... or visit > > > the web site at http://www.chargesyndrome.org > > > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > > > > > 8th International > > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Indeed Lesley, Elaine is right, you stick to your guns. I will try to reply to your query tomorrow. I have been on sentry duty outside 's room tonight (that girl can certainly string out the sneaking out of bed thing!) and I only got around 4 hours' sleep last night so brain not quite functioning. Elaine, I also have some suggestions for you as adaptations are an expensive business if means tested. Will e-in from work. Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Indeed Lesley, Elaine is right, you stick to your guns. I will try to reply to your query tomorrow. I have been on sentry duty outside 's room tonight (that girl can certainly string out the sneaking out of bed thing!) and I only got around 4 hours' sleep last night so brain not quite functioning. Elaine, I also have some suggestions for you as adaptations are an expensive business if means tested. Will e-in from work. Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Hi Elaine, In for a penny............... Having replied to Lesley after all, might as well get to you as something at work may interrupt. work certainly gets in the way. About the bathroom and adaptations, we too have a tiny one with an over bath shower. What our now gone lovely OT did was install a rail on the outside of the bath (I think it is called a Swedish rail - it is an " n " shaped one (well, she called it an upside down " u " ). It is screwed to the floor and secured over the bath and adjustable in height and oh so esily removable without leaving any mess whenever the child no longer needs it. She then supplied a wide two height standing stool that would have to try quite hard to fall off. Basically, uses the stool and holds on to the rail to get into and out of the bath independently. She has got it down to a fine art. The same OT then had a rail installed on the wall over the bath so she can hold onto that for stability to wash or have a shower. This sort of thing would certainly save you having the whole bathroom adapted and would give Jack his independence and the family an ongoing choice about bath and shower. If you would like photos, we can send. The other thing we do is use bog standard Mothercare antislip bath mats in the bath to enable to stand and hold onto the rail safely. I seem to recall the OT telling me that you can have equipment and adaptations up to £1000 without falling into the means tesing. Is it the same in Scotland? For your info, we also had a movable frame round the toilet to help her on and off, a stair rail and metal rails to enable her to get down the two steps leading to the garden. All this was in the same year (around 1-1/2 years ago) and we did not exceed our £1000. On the assessment for respite thing, it is never too late. Are you now also legal for direct payments? We have just had an assessment for input for ongoing social activities as well as the summer thing. Will let you know the outcome. The assessment was quite an emotional journey as it made me really closely examine some things I just kind of like to keep a lid on. I was waiting for the outcome to also get back to Lesley about her abysmal offer from Social Services. Good luck with the assessments. Arm yourself with the Sense factsheets too if you can. The social worker who assessed was really thorough but admitted to knowing little about CHARGE or deafness so we are sending her the factsheets tomorrow. She has a blind daughter so at least she knew this bit, but of course, we all know CHARGE is about the multiplicity of the children's challenges. She appeared to take this on board so here's hoping her manager and the panel feel the same way. Keep us posted on how you get on. Off to bed........ Flo > > Lesley, > We don't have any adaptions to our home for Jack. He didn't weight bear > for > the longest time and only started walking when he was 4yrs and 4mths old > and > even then he was very, very cautious and held onto furniture, walls and > whoever was close by. > He goes up and down the stairs himself now but still holds onto the rail > with both hands and goes up and down putting both feet on one step if you > know > what I mean. He still can't walk up or down stairs the same way as we do. > When he first started going up and down stairs he would crawl up them and > bump down them on his bottom.He still does this when he's tired !!! > We are currently waiting for an OT assessment from Social Services to > see if > they can help with adapting our bathroom for Jack. We have the tiniest > bathroom with just a shower over the bath. Jack can't get in or out on his > own and > I can't see him being able to do so for quite some time. We are going to > take the bath out and put a shower cubicle in which would give him a bit > of > independance. > Grants here in Scotland are still means tested for disabled children so > we'll have to see if we get any help with the cost. I'm not holding my > breath > waiting though I think the law changed in England and Wales last year > so it > doesn't matter how much income the parents have when assessing grants for > adapting the home. > We are actually having someone come to see us tomorrow night from the > Children's Disabilities Team to see if there is anything they can offer us > regarding respite etc. Jack's almost 9 now but better late than never I > suppose. We > don't want overnight respite but some help during school holidays would be > great. > Good luck with the OT assessment. They must be able to compromise surely > ?? > Maybe they think that it will put you off and you'll say 'oh forget it' > but > you stick to your guns. > > Hugs > > Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE > Scotland > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Hi Elaine, In for a penny............... Having replied to Lesley after all, might as well get to you as something at work may interrupt. work certainly gets in the way. About the bathroom and adaptations, we too have a tiny one with an over bath shower. What our now gone lovely OT did was install a rail on the outside of the bath (I think it is called a Swedish rail - it is an " n " shaped one (well, she called it an upside down " u " ). It is screwed to the floor and secured over the bath and adjustable in height and oh so esily removable without leaving any mess whenever the child no longer needs it. She then supplied a wide two height standing stool that would have to try quite hard to fall off. Basically, uses the stool and holds on to the rail to get into and out of the bath independently. She has got it down to a fine art. The same OT then had a rail installed on the wall over the bath so she can hold onto that for stability to wash or have a shower. This sort of thing would certainly save you having the whole bathroom adapted and would give Jack his independence and the family an ongoing choice about bath and shower. If you would like photos, we can send. The other thing we do is use bog standard Mothercare antislip bath mats in the bath to enable to stand and hold onto the rail safely. I seem to recall the OT telling me that you can have equipment and adaptations up to £1000 without falling into the means tesing. Is it the same in Scotland? For your info, we also had a movable frame round the toilet to help her on and off, a stair rail and metal rails to enable her to get down the two steps leading to the garden. All this was in the same year (around 1-1/2 years ago) and we did not exceed our £1000. On the assessment for respite thing, it is never too late. Are you now also legal for direct payments? We have just had an assessment for input for ongoing social activities as well as the summer thing. Will let you know the outcome. The assessment was quite an emotional journey as it made me really closely examine some things I just kind of like to keep a lid on. I was waiting for the outcome to also get back to Lesley about her abysmal offer from Social Services. Good luck with the assessments. Arm yourself with the Sense factsheets too if you can. The social worker who assessed was really thorough but admitted to knowing little about CHARGE or deafness so we are sending her the factsheets tomorrow. She has a blind daughter so at least she knew this bit, but of course, we all know CHARGE is about the multiplicity of the children's challenges. She appeared to take this on board so here's hoping her manager and the panel feel the same way. Keep us posted on how you get on. Off to bed........ Flo > > Lesley, > We don't have any adaptions to our home for Jack. He didn't weight bear > for > the longest time and only started walking when he was 4yrs and 4mths old > and > even then he was very, very cautious and held onto furniture, walls and > whoever was close by. > He goes up and down the stairs himself now but still holds onto the rail > with both hands and goes up and down putting both feet on one step if you > know > what I mean. He still can't walk up or down stairs the same way as we do. > When he first started going up and down stairs he would crawl up them and > bump down them on his bottom.He still does this when he's tired !!! > We are currently waiting for an OT assessment from Social Services to > see if > they can help with adapting our bathroom for Jack. We have the tiniest > bathroom with just a shower over the bath. Jack can't get in or out on his > own and > I can't see him being able to do so for quite some time. We are going to > take the bath out and put a shower cubicle in which would give him a bit > of > independance. > Grants here in Scotland are still means tested for disabled children so > we'll have to see if we get any help with the cost. I'm not holding my > breath > waiting though I think the law changed in England and Wales last year > so it > doesn't matter how much income the parents have when assessing grants for > adapting the home. > We are actually having someone come to see us tomorrow night from the > Children's Disabilities Team to see if there is anything they can offer us > regarding respite etc. Jack's almost 9 now but better late than never I > suppose. We > don't want overnight respite but some help during school holidays would be > great. > Good luck with the OT assessment. They must be able to compromise surely > ?? > Maybe they think that it will put you off and you'll say 'oh forget it' > but > you stick to your guns. > > Hugs > > Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE > Scotland > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 flo and elain ive had that kinda stuff to i cant have showers cant stand up probly but its funny i love my shower if im at respite or at my friends house and they only have shower i dont get out they have to drag me LOL they have a chair for me to sti and the movable shower thingy and well i do it lol > > Hi Elaine, > In for a penny............... Having replied to Lesley after all, might as > well get to you as something at work may interrupt. work certainly gets > in > the way. > > About the bathroom and adaptations, we too have a tiny one with an over > bath > shower. What our now gone lovely OT did was install a rail on the outside > of the bath (I think it is called a Swedish rail - it is an " n " shaped one > (well, she called it an upside down " u " ). It is screwed to the floor and > secured over the bath and adjustable in height and oh so esily removable > without leaving any mess whenever the child no longer needs it. She then > supplied a wide two height standing stool that would have to try > quite hard to fall off. Basically, uses the stool and holds on to > the rail to get into and out of the bath independently. She has got it > down > to a fine art. The same OT then had a rail installed on the wall over the > bath so she can hold onto that for stability to wash or have a > shower. This > sort of thing would certainly save you having the whole bathroom adapted > and > would give Jack his independence and the family an ongoing choice about > bath > and shower. If you would like photos, we can send. The other thing we do > is use bog standard Mothercare antislip bath mats in the bath to enable > to stand and hold onto the rail safely. I seem to recall the OT > telling me that you can have equipment and adaptations up to £1000 without > falling into the means tesing. Is it the same in Scotland? For your > info, > we also had a movable frame round the toilet to help her on and off, a > stair > rail and metal rails to enable her to get down the two steps leading to > the > garden. All this was in the same year (around 1-1/2 years ago) and we did > not exceed our £1000. > > On the assessment for respite thing, it is never too late. Are you now > also > legal for direct payments? We have just had an assessment for input for > ongoing social activities as well as the summer thing. Will let you know > the outcome. The assessment was quite an emotional journey as it made me > really closely examine some things I just kind of like to keep a lid > on. I > was waiting for the outcome to also get back to Lesley about her abysmal > offer from Social Services. > > Good luck with the assessments. Arm yourself with the Sense factsheets > too > if you can. The social worker who assessed was really thorough > but > admitted to knowing little about CHARGE or deafness so we are sending her > the factsheets tomorrow. She has a blind daughter so at least she knew > this > bit, but of course, we all know CHARGE is about the multiplicity of the > children's challenges. She appeared to take this on board so here's > hoping > her manager and the panel feel the same way. > > Keep us posted on how you get on. > > Off to bed........ > Flo > > > > > > > Lesley, > > We don't have any adaptions to our home for Jack. He didn't weight bear > > for > > the longest time and only started walking when he was 4yrs and 4mths old > > and > > even then he was very, very cautious and held onto furniture, walls and > > whoever was close by. > > He goes up and down the stairs himself now but still holds onto the rail > > with both hands and goes up and down putting both feet on one step if > you > > know > > what I mean. He still can't walk up or down stairs the same way as we > do. > > When he first started going up and down stairs he would crawl up them > and > > bump down them on his bottom.He still does this when he's tired !!! > > We are currently waiting for an OT assessment from Social Services to > > see if > > they can help with adapting our bathroom for Jack. We have the tiniest > > bathroom with just a shower over the bath. Jack can't get in or out on > his > > own and > > I can't see him being able to do so for quite some time. We are going to > > take the bath out and put a shower cubicle in which would give him a bit > > of > > independance. > > Grants here in Scotland are still means tested for disabled children so > > we'll have to see if we get any help with the cost. I'm not holding my > > breath > > waiting though I think the law changed in England and Wales last > year > > so it > > doesn't matter how much income the parents have when assessing grants > for > > adapting the home. > > We are actually having someone come to see us tomorrow night from the > > Children's Disabilities Team to see if there is anything they can offer > us > > regarding respite etc. Jack's almost 9 now but better late than never I > > suppose. We > > don't want overnight respite but some help during school holidays would > be > > great. > > Good luck with the OT assessment. They must be able to compromise surely > > ?? > > Maybe they think that it will put you off and you'll say 'oh forget it' > > but > > you stick to your guns. > > > > Hugs > > > > Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE > > Scotland > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 flo and elain ive had that kinda stuff to i cant have showers cant stand up probly but its funny i love my shower if im at respite or at my friends house and they only have shower i dont get out they have to drag me LOL they have a chair for me to sti and the movable shower thingy and well i do it lol > > Hi Elaine, > In for a penny............... Having replied to Lesley after all, might as > well get to you as something at work may interrupt. work certainly gets > in > the way. > > About the bathroom and adaptations, we too have a tiny one with an over > bath > shower. What our now gone lovely OT did was install a rail on the outside > of the bath (I think it is called a Swedish rail - it is an " n " shaped one > (well, she called it an upside down " u " ). It is screwed to the floor and > secured over the bath and adjustable in height and oh so esily removable > without leaving any mess whenever the child no longer needs it. She then > supplied a wide two height standing stool that would have to try > quite hard to fall off. Basically, uses the stool and holds on to > the rail to get into and out of the bath independently. She has got it > down > to a fine art. The same OT then had a rail installed on the wall over the > bath so she can hold onto that for stability to wash or have a > shower. This > sort of thing would certainly save you having the whole bathroom adapted > and > would give Jack his independence and the family an ongoing choice about > bath > and shower. If you would like photos, we can send. The other thing we do > is use bog standard Mothercare antislip bath mats in the bath to enable > to stand and hold onto the rail safely. I seem to recall the OT > telling me that you can have equipment and adaptations up to £1000 without > falling into the means tesing. Is it the same in Scotland? For your > info, > we also had a movable frame round the toilet to help her on and off, a > stair > rail and metal rails to enable her to get down the two steps leading to > the > garden. All this was in the same year (around 1-1/2 years ago) and we did > not exceed our £1000. > > On the assessment for respite thing, it is never too late. Are you now > also > legal for direct payments? We have just had an assessment for input for > ongoing social activities as well as the summer thing. Will let you know > the outcome. The assessment was quite an emotional journey as it made me > really closely examine some things I just kind of like to keep a lid > on. I > was waiting for the outcome to also get back to Lesley about her abysmal > offer from Social Services. > > Good luck with the assessments. Arm yourself with the Sense factsheets > too > if you can. The social worker who assessed was really thorough > but > admitted to knowing little about CHARGE or deafness so we are sending her > the factsheets tomorrow. She has a blind daughter so at least she knew > this > bit, but of course, we all know CHARGE is about the multiplicity of the > children's challenges. She appeared to take this on board so here's > hoping > her manager and the panel feel the same way. > > Keep us posted on how you get on. > > Off to bed........ > Flo > > > > > > > Lesley, > > We don't have any adaptions to our home for Jack. He didn't weight bear > > for > > the longest time and only started walking when he was 4yrs and 4mths old > > and > > even then he was very, very cautious and held onto furniture, walls and > > whoever was close by. > > He goes up and down the stairs himself now but still holds onto the rail > > with both hands and goes up and down putting both feet on one step if > you > > know > > what I mean. He still can't walk up or down stairs the same way as we > do. > > When he first started going up and down stairs he would crawl up them > and > > bump down them on his bottom.He still does this when he's tired !!! > > We are currently waiting for an OT assessment from Social Services to > > see if > > they can help with adapting our bathroom for Jack. We have the tiniest > > bathroom with just a shower over the bath. Jack can't get in or out on > his > > own and > > I can't see him being able to do so for quite some time. We are going to > > take the bath out and put a shower cubicle in which would give him a bit > > of > > independance. > > Grants here in Scotland are still means tested for disabled children so > > we'll have to see if we get any help with the cost. I'm not holding my > > breath > > waiting though I think the law changed in England and Wales last > year > > so it > > doesn't matter how much income the parents have when assessing grants > for > > adapting the home. > > We are actually having someone come to see us tomorrow night from the > > Children's Disabilities Team to see if there is anything they can offer > us > > regarding respite etc. Jack's almost 9 now but better late than never I > > suppose. We > > don't want overnight respite but some help during school holidays would > be > > great. > > Good luck with the OT assessment. They must be able to compromise surely > > ?? > > Maybe they think that it will put you off and you'll say 'oh forget it' > > but > > you stick to your guns. > > > > Hugs > > > > Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE > > Scotland > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 flo and elain ive had that kinda stuff to i cant have showers cant stand up probly but its funny i love my shower if im at respite or at my friends house and they only have shower i dont get out they have to drag me LOL they have a chair for me to sti and the movable shower thingy and well i do it lol > > Hi Elaine, > In for a penny............... Having replied to Lesley after all, might as > well get to you as something at work may interrupt. work certainly gets > in > the way. > > About the bathroom and adaptations, we too have a tiny one with an over > bath > shower. What our now gone lovely OT did was install a rail on the outside > of the bath (I think it is called a Swedish rail - it is an " n " shaped one > (well, she called it an upside down " u " ). It is screwed to the floor and > secured over the bath and adjustable in height and oh so esily removable > without leaving any mess whenever the child no longer needs it. She then > supplied a wide two height standing stool that would have to try > quite hard to fall off. Basically, uses the stool and holds on to > the rail to get into and out of the bath independently. She has got it > down > to a fine art. The same OT then had a rail installed on the wall over the > bath so she can hold onto that for stability to wash or have a > shower. This > sort of thing would certainly save you having the whole bathroom adapted > and > would give Jack his independence and the family an ongoing choice about > bath > and shower. If you would like photos, we can send. The other thing we do > is use bog standard Mothercare antislip bath mats in the bath to enable > to stand and hold onto the rail safely. I seem to recall the OT > telling me that you can have equipment and adaptations up to £1000 without > falling into the means tesing. Is it the same in Scotland? For your > info, > we also had a movable frame round the toilet to help her on and off, a > stair > rail and metal rails to enable her to get down the two steps leading to > the > garden. All this was in the same year (around 1-1/2 years ago) and we did > not exceed our £1000. > > On the assessment for respite thing, it is never too late. Are you now > also > legal for direct payments? We have just had an assessment for input for > ongoing social activities as well as the summer thing. Will let you know > the outcome. The assessment was quite an emotional journey as it made me > really closely examine some things I just kind of like to keep a lid > on. I > was waiting for the outcome to also get back to Lesley about her abysmal > offer from Social Services. > > Good luck with the assessments. Arm yourself with the Sense factsheets > too > if you can. The social worker who assessed was really thorough > but > admitted to knowing little about CHARGE or deafness so we are sending her > the factsheets tomorrow. She has a blind daughter so at least she knew > this > bit, but of course, we all know CHARGE is about the multiplicity of the > children's challenges. She appeared to take this on board so here's > hoping > her manager and the panel feel the same way. > > Keep us posted on how you get on. > > Off to bed........ > Flo > > > > > > > Lesley, > > We don't have any adaptions to our home for Jack. He didn't weight bear > > for > > the longest time and only started walking when he was 4yrs and 4mths old > > and > > even then he was very, very cautious and held onto furniture, walls and > > whoever was close by. > > He goes up and down the stairs himself now but still holds onto the rail > > with both hands and goes up and down putting both feet on one step if > you > > know > > what I mean. He still can't walk up or down stairs the same way as we > do. > > When he first started going up and down stairs he would crawl up them > and > > bump down them on his bottom.He still does this when he's tired !!! > > We are currently waiting for an OT assessment from Social Services to > > see if > > they can help with adapting our bathroom for Jack. We have the tiniest > > bathroom with just a shower over the bath. Jack can't get in or out on > his > > own and > > I can't see him being able to do so for quite some time. We are going to > > take the bath out and put a shower cubicle in which would give him a bit > > of > > independance. > > Grants here in Scotland are still means tested for disabled children so > > we'll have to see if we get any help with the cost. I'm not holding my > > breath > > waiting though I think the law changed in England and Wales last > year > > so it > > doesn't matter how much income the parents have when assessing grants > for > > adapting the home. > > We are actually having someone come to see us tomorrow night from the > > Children's Disabilities Team to see if there is anything they can offer > us > > regarding respite etc. Jack's almost 9 now but better late than never I > > suppose. We > > don't want overnight respite but some help during school holidays would > be > > great. > > Good luck with the OT assessment. They must be able to compromise surely > > ?? > > Maybe they think that it will put you off and you'll say 'oh forget it' > > but > > you stick to your guns. > > > > Hugs > > > > Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE > > Scotland > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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