Guest guest Posted September 7, 2011 Report Share Posted September 7, 2011 I would suggest getting your appeal in as soon as possible - there is only a short appeal period and the letter informing you is probably already nearly a fortnight old by the time it reaches you. Suggest getting the appeal in and then prepare the substance of the appeal afterwards. Contact a Family has very good info re DLA on their website and you might be able to get telephone help from them as well (I'm not sure). Also I would try the NAS helpline to see if they have any info specific to autism and DLA. I just reapplied for Henry's DLA a couple of weeks ago and have been told over the phone it's been renewed indefinitely at the same rate but I am still waiting for that all-important letter.... Suggest checking again exactly what the criteria are to get medium rate DLA - care needs have to be substantial throughout the day, but it's good to look at case law etc. If Katy has significant night needs than you could even get higher rate care. They take the night as ending when the family would normally get up - they are usually working from 11pm to night ending at 7 am. As Henry gets up at 5.30 to 6am usually we get the higher rate of care - but he also has disrupted nights sometimes and when he gets up for the loo I have to get up quickly otherwise he will have all the lights on, his computer on, the telly on etc etc. And we now have the epilepsy back at night too. But I think simply having a child get up very early who then requires supervision to be safe can qualify them for the high rate of care. If you get the higher rate of care you may then also be able to get the higher rate of mobility, depending on what the child is like, of course. Good luck. It's very hard work doing those awful forms. Margaret > > Hi, > > Wondered if anyone could enlighten me. My daughter Katy is almost 16 yrs old and has been recieving top level DLA since the age of 3 yrs. We recently had to apply again and her Dla has been reduced to moderate to low support. They say she has now lost the top level because she does not have severe mental impairment. I feel Katy does have severe mental impairment,admittedly over the years with lots of input her condition has improved, but she still requires constant supervision to keep her safe. She has some speech but a very limited understanding of the world. The majority of the skills she now has are through memory rather than understanding. > > I've looked fro a definition of severe mental impairment and what I've come up with says that if the young person is aggressive then they can be classed as having SMI. Katy is not aggressive but the level of support she requires has not decreased. > > I'm worried she will not get the correct support she needs as an adult if DLA continues to be cut. > > Any advise or comments will be very appreciated. > > Thanks Sharon x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2011 Report Share Posted September 7, 2011 I would suggest getting your appeal in as soon as possible - there is only a short appeal period and the letter informing you is probably already nearly a fortnight old by the time it reaches you. Suggest getting the appeal in and then prepare the substance of the appeal afterwards. Contact a Family has very good info re DLA on their website and you might be able to get telephone help from them as well (I'm not sure). Also I would try the NAS helpline to see if they have any info specific to autism and DLA. I just reapplied for Henry's DLA a couple of weeks ago and have been told over the phone it's been renewed indefinitely at the same rate but I am still waiting for that all-important letter.... Suggest checking again exactly what the criteria are to get medium rate DLA - care needs have to be substantial throughout the day, but it's good to look at case law etc. If Katy has significant night needs than you could even get higher rate care. They take the night as ending when the family would normally get up - they are usually working from 11pm to night ending at 7 am. As Henry gets up at 5.30 to 6am usually we get the higher rate of care - but he also has disrupted nights sometimes and when he gets up for the loo I have to get up quickly otherwise he will have all the lights on, his computer on, the telly on etc etc. And we now have the epilepsy back at night too. But I think simply having a child get up very early who then requires supervision to be safe can qualify them for the high rate of care. If you get the higher rate of care you may then also be able to get the higher rate of mobility, depending on what the child is like, of course. Good luck. It's very hard work doing those awful forms. Margaret > > Hi, > > Wondered if anyone could enlighten me. My daughter Katy is almost 16 yrs old and has been recieving top level DLA since the age of 3 yrs. We recently had to apply again and her Dla has been reduced to moderate to low support. They say she has now lost the top level because she does not have severe mental impairment. I feel Katy does have severe mental impairment,admittedly over the years with lots of input her condition has improved, but she still requires constant supervision to keep her safe. She has some speech but a very limited understanding of the world. The majority of the skills she now has are through memory rather than understanding. > > I've looked fro a definition of severe mental impairment and what I've come up with says that if the young person is aggressive then they can be classed as having SMI. Katy is not aggressive but the level of support she requires has not decreased. > > I'm worried she will not get the correct support she needs as an adult if DLA continues to be cut. > > Any advise or comments will be very appreciated. > > Thanks Sharon x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2011 Report Share Posted September 7, 2011 PS " constant supervision to keep her safe " - of course she should have the medium rate of care then and if she has significant night needs as well then the higher rate of care. Do you have a good professional who can back you eg someone from CAMHS, or failing that, a paediatrician? Margaret > > > > Hi, > > > > Wondered if anyone could enlighten me. My daughter Katy is almost 16 yrs old and has been recieving top level DLA since the age of 3 yrs. We recently had to apply again and her Dla has been reduced to moderate to low support. They say she has now lost the top level because she does not have severe mental impairment. I feel Katy does have severe mental impairment,admittedly over the years with lots of input her condition has improved, but she still requires constant supervision to keep her safe. She has some speech but a very limited understanding of the world. The majority of the skills she now has are through memory rather than understanding. > > > > I've looked fro a definition of severe mental impairment and what I've come up with says that if the young person is aggressive then they can be classed as having SMI. Katy is not aggressive but the level of support she requires has not decreased. > > > > I'm worried she will not get the correct support she needs as an adult if DLA continues to be cut. > > > > Any advise or comments will be very appreciated. > > > > Thanks Sharon x > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2011 Report Share Posted September 7, 2011 hi sharon Get the disability benefits handbook (produced annually ) and in your library. Photocopy sections on DLA mobility and care component. Definitions in that. She should qualify from severe mental impairment from what you say and maybe also "virtual inability to walk". Remember to use their terminology together with examples of personal stories about Katy that illustrate. Eg if fly/wasp comes near she will run into road regardless of traffic to get away from wasp/have to hold her hand near traffic but even then she may choose to lie down in road or pull away from you etc DLA Hi, Wondered if anyone could enlighten me. My daughter Katy is almost 16 yrs old and has been recieving top level DLA since the age of 3 yrs. We recently had to apply again and her Dla has been reduced to moderate to low support. They say she has now lost the top level because she does not have severe mental impairment. I feel Katy does have severe mental impairment,admittedly over the years with lots of input her condition has improved, but she still requires constant supervision to keep her safe. She has some speech but a very limited understanding of the world. The majority of the skills she now has are through memory rather than understanding. I've looked fro a definition of severe mental impairment and what I've come up with says that if the young person is aggressive then they can be classed as having SMI. Katy is not aggressive but the level of support she requires has not decreased. I'm worried she will not get the correct support she needs as an adult if DLA continues to be cut. Any advise or comments will be very appreciated. Thanks Sharon x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2011 Report Share Posted September 7, 2011 hi sharon Get the disability benefits handbook (produced annually ) and in your library. Photocopy sections on DLA mobility and care component. Definitions in that. She should qualify from severe mental impairment from what you say and maybe also "virtual inability to walk". Remember to use their terminology together with examples of personal stories about Katy that illustrate. Eg if fly/wasp comes near she will run into road regardless of traffic to get away from wasp/have to hold her hand near traffic but even then she may choose to lie down in road or pull away from you etc DLA Hi, Wondered if anyone could enlighten me. My daughter Katy is almost 16 yrs old and has been recieving top level DLA since the age of 3 yrs. We recently had to apply again and her Dla has been reduced to moderate to low support. They say she has now lost the top level because she does not have severe mental impairment. I feel Katy does have severe mental impairment,admittedly over the years with lots of input her condition has improved, but she still requires constant supervision to keep her safe. She has some speech but a very limited understanding of the world. The majority of the skills she now has are through memory rather than understanding. I've looked fro a definition of severe mental impairment and what I've come up with says that if the young person is aggressive then they can be classed as having SMI. Katy is not aggressive but the level of support she requires has not decreased. I'm worried she will not get the correct support she needs as an adult if DLA continues to be cut. Any advise or comments will be very appreciated. Thanks Sharon x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2011 Report Share Posted September 7, 2011 Hi Margaret and . Thanks for your advise. I thought we had put enough detail in our form. We told them she gets up in the early hours and we have to supervise her otherwise she will take food she shouldn't have ,as she has severe allergies.In school she is supervised all the time.If given the chance she'll pick food off the floor. I told them all this.... Thanks for the example about the wasp .I can use this as she is terrified of dogs and will run off when she sees one. We really have to hold her and talk to her, as she is so scared. We contacted them as soon as we recieved notification her DLA had been reduced and we have to write another letter and they will reconsider. if we are not successful we have told them we wish to appeal. We were recieving motability before but they want to stop this. I was really flabbergasted with their decision. We have decided to take Katy to the appeal if it goes that far and they can see for themselves her problems. Thank you , you have helped. Sharonx > > > hi sharon > > Get the disability benefits handbook (produced annually ) and in your library. Photocopy sections on DLA mobility and care component. Definitions in that. She should qualify from severe mental impairment from what you say and maybe also " virtual inability to walk " . Remember to use their terminology together with examples of personal stories about Katy that illustrate. Eg if fly/wasp comes near she will run into road regardless of traffic to get away from wasp/have to hold her hand near traffic but even then she may choose to lie down in road or pull away from you etc > > > > > > > > DLA > > > > > Hi, > > Wondered if anyone could enlighten me. My daughter Katy is almost 16 yrs old and has been recieving top level DLA since the age of 3 yrs. We recently had to apply again and her Dla has been reduced to moderate to low support. They say she has now lost the top level because she does not have severe mental impairment. I feel Katy does have severe mental impairment,admittedly over the years with lots of input her condition has improved, but she still requires constant supervision to keep her safe. She has some speech but a very limited understanding of the world. The majority of the skills she now has are through memory rather than understanding. > > I've looked fro a definition of severe mental impairment and what I've come up with says that if the young person is aggressive then they can be classed as having SMI. Katy is not aggressive but the level of support she requires has not decreased. > > I'm worried she will not get the correct support she needs as an adult if DLA continues to be cut. > > Any advise or comments will be very appreciated. > > Thanks Sharon x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2011 Report Share Posted September 7, 2011 Hi Margaret and . Thanks for your advise. I thought we had put enough detail in our form. We told them she gets up in the early hours and we have to supervise her otherwise she will take food she shouldn't have ,as she has severe allergies.In school she is supervised all the time.If given the chance she'll pick food off the floor. I told them all this.... Thanks for the example about the wasp .I can use this as she is terrified of dogs and will run off when she sees one. We really have to hold her and talk to her, as she is so scared. We contacted them as soon as we recieved notification her DLA had been reduced and we have to write another letter and they will reconsider. if we are not successful we have told them we wish to appeal. We were recieving motability before but they want to stop this. I was really flabbergasted with their decision. We have decided to take Katy to the appeal if it goes that far and they can see for themselves her problems. Thank you , you have helped. Sharonx > > > hi sharon > > Get the disability benefits handbook (produced annually ) and in your library. Photocopy sections on DLA mobility and care component. Definitions in that. She should qualify from severe mental impairment from what you say and maybe also " virtual inability to walk " . Remember to use their terminology together with examples of personal stories about Katy that illustrate. Eg if fly/wasp comes near she will run into road regardless of traffic to get away from wasp/have to hold her hand near traffic but even then she may choose to lie down in road or pull away from you etc > > > > > > > > DLA > > > > > Hi, > > Wondered if anyone could enlighten me. My daughter Katy is almost 16 yrs old and has been recieving top level DLA since the age of 3 yrs. We recently had to apply again and her Dla has been reduced to moderate to low support. They say she has now lost the top level because she does not have severe mental impairment. I feel Katy does have severe mental impairment,admittedly over the years with lots of input her condition has improved, but she still requires constant supervision to keep her safe. She has some speech but a very limited understanding of the world. The majority of the skills she now has are through memory rather than understanding. > > I've looked fro a definition of severe mental impairment and what I've come up with says that if the young person is aggressive then they can be classed as having SMI. Katy is not aggressive but the level of support she requires has not decreased. > > I'm worried she will not get the correct support she needs as an adult if DLA continues to be cut. > > Any advise or comments will be very appreciated. > > Thanks Sharon x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2011 Report Share Posted September 7, 2011 Hi Sharon, The NAS website is/was pretty good on this - 'severe mental impairment' was the core of our arguments, although we had to go to tribunal to get the higher rates. We also got letters from our SW, gastroenterologist and psychiatrist in support. Norfolk also has a Disability Rights officer employed by the County Council and he also gave us a lot of help and advice. Perhaps your Council has such a person too? My advice would be to fight hard for the higher rates-they make such a difference when our children become adults, as we've learned from hard experience. Good luck Patience > > > > > > hi sharon > > > > Get the disability benefits handbook (produced annually ) and in your library. Photocopy sections on DLA mobility and care component. Definitions in that. She should qualify from severe mental impairment from what you say and maybe also " virtual inability to walk " . Remember to use their terminology together with examples of personal stories about Katy that illustrate. Eg if fly/wasp comes near she will run into road regardless of traffic to get away from wasp/have to hold her hand near traffic but even then she may choose to lie down in road or pull away from you etc > > > > > > > > > > > > > > > > DLA > > > > > > > > > > Hi, > > > > Wondered if anyone could enlighten me. My daughter Katy is almost 16 yrs old and has been recieving top level DLA since the age of 3 yrs. We recently had to apply again and her Dla has been reduced to moderate to low support. They say she has now lost the top level because she does not have severe mental impairment. I feel Katy does have severe mental impairment,admittedly over the years with lots of input her condition has improved, but she still requires constant supervision to keep her safe. She has some speech but a very limited understanding of the world. The majority of the skills she now has are through memory rather than understanding. > > > > I've looked fro a definition of severe mental impairment and what I've come up with says that if the young person is aggressive then they can be classed as having SMI. Katy is not aggressive but the level of support she requires has not decreased. > > > > I'm worried she will not get the correct support she needs as an adult if DLA continues to be cut. > > > > Any advise or comments will be very appreciated. > > > > Thanks Sharon x > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2011 Report Share Posted September 7, 2011 Hi Sharon, The NAS website is/was pretty good on this - 'severe mental impairment' was the core of our arguments, although we had to go to tribunal to get the higher rates. We also got letters from our SW, gastroenterologist and psychiatrist in support. Norfolk also has a Disability Rights officer employed by the County Council and he also gave us a lot of help and advice. Perhaps your Council has such a person too? My advice would be to fight hard for the higher rates-they make such a difference when our children become adults, as we've learned from hard experience. Good luck Patience > > > > > > hi sharon > > > > Get the disability benefits handbook (produced annually ) and in your library. Photocopy sections on DLA mobility and care component. Definitions in that. She should qualify from severe mental impairment from what you say and maybe also " virtual inability to walk " . Remember to use their terminology together with examples of personal stories about Katy that illustrate. Eg if fly/wasp comes near she will run into road regardless of traffic to get away from wasp/have to hold her hand near traffic but even then she may choose to lie down in road or pull away from you etc > > > > > > > > > > > > > > > > DLA > > > > > > > > > > Hi, > > > > Wondered if anyone could enlighten me. My daughter Katy is almost 16 yrs old and has been recieving top level DLA since the age of 3 yrs. We recently had to apply again and her Dla has been reduced to moderate to low support. They say she has now lost the top level because she does not have severe mental impairment. I feel Katy does have severe mental impairment,admittedly over the years with lots of input her condition has improved, but she still requires constant supervision to keep her safe. She has some speech but a very limited understanding of the world. The majority of the skills she now has are through memory rather than understanding. > > > > I've looked fro a definition of severe mental impairment and what I've come up with says that if the young person is aggressive then they can be classed as having SMI. Katy is not aggressive but the level of support she requires has not decreased. > > > > I'm worried she will not get the correct support she needs as an adult if DLA continues to be cut. > > > > Any advise or comments will be very appreciated. > > > > Thanks Sharon x > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2011 Report Share Posted September 7, 2011 Hi Sharon, The NAS website is/was pretty good on this - 'severe mental impairment' was the core of our arguments, although we had to go to tribunal to get the higher rates. We also got letters from our SW, gastroenterologist and psychiatrist in support. Norfolk also has a Disability Rights officer employed by the County Council and he also gave us a lot of help and advice. Perhaps your Council has such a person too? My advice would be to fight hard for the higher rates-they make such a difference when our children become adults, as we've learned from hard experience. Good luck Patience > > > > > > hi sharon > > > > Get the disability benefits handbook (produced annually ) and in your library. Photocopy sections on DLA mobility and care component. Definitions in that. She should qualify from severe mental impairment from what you say and maybe also " virtual inability to walk " . Remember to use their terminology together with examples of personal stories about Katy that illustrate. Eg if fly/wasp comes near she will run into road regardless of traffic to get away from wasp/have to hold her hand near traffic but even then she may choose to lie down in road or pull away from you etc > > > > > > > > > > > > > > > > DLA > > > > > > > > > > Hi, > > > > Wondered if anyone could enlighten me. My daughter Katy is almost 16 yrs old and has been recieving top level DLA since the age of 3 yrs. We recently had to apply again and her Dla has been reduced to moderate to low support. They say she has now lost the top level because she does not have severe mental impairment. I feel Katy does have severe mental impairment,admittedly over the years with lots of input her condition has improved, but she still requires constant supervision to keep her safe. She has some speech but a very limited understanding of the world. The majority of the skills she now has are through memory rather than understanding. > > > > I've looked fro a definition of severe mental impairment and what I've come up with says that if the young person is aggressive then they can be classed as having SMI. Katy is not aggressive but the level of support she requires has not decreased. > > > > I'm worried she will not get the correct support she needs as an adult if DLA continues to be cut. > > > > Any advise or comments will be very appreciated. > > > > Thanks Sharon x > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2011 Report Share Posted September 7, 2011 Good luck Margaret. It is worth going to appeal. We did this when my son was 8 or 9 and won. Think its been easier since to convince them we require the high rates of disability. Please do get the disability benefits handbook. It will make all hte difference to any appeal becuase you will know what they are looking for and understand their terminology. It is easy to slip up and use terms like superivise/wathch over interchangeably. Yet in their terms they mean totally different things. Also very important to always follow the chain of the logic below in order to meet the criteria.... Katy has a severe mental impairment caused by her autism and thus she does (example of behaviour). It is essential you highlight the brain "damage/dysfunction" rather than the autism. So, for instance the first question on the mobility section asks something along the lines of does she/he have a physical disability. The answer is yes! She/he is brain damaged/impaired. (Brain impairment/damage/dysfunction is seen as a "physical" disability. ~ DLA > > > > > Hi, > > Wondered if anyone could enlighten me. My daughter Katy is almost 16 yrs old and has been recieving top level DLA since the age of 3 yrs. We recently had to apply again and her Dla has been reduced to moderate to low support. They say she has now lost the top level because she does not have severe mental impairment. I feel Katy does have severe mental impairment,admittedly over the years with lots of input her condition has improved, but she still requires constant supervision to keep her safe. She has some speech but a very limited understanding of the world. The majority of the skills she now has are through memory rather than understanding. > > I've looked fro a definition of severe mental impairment and what I've come up with says that if the young person is aggressive then they can be classed as having SMI. Katy is not aggressive but the level of support she requires has not decreased. > > I'm worried she will not get the correct support she needs as an adult if DLA continues to be cut. > > Any advise or comments will be very appreciated. > > Thanks Sharon x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2011 Report Share Posted September 7, 2011 Good luck Margaret. It is worth going to appeal. We did this when my son was 8 or 9 and won. Think its been easier since to convince them we require the high rates of disability. Please do get the disability benefits handbook. It will make all hte difference to any appeal becuase you will know what they are looking for and understand their terminology. It is easy to slip up and use terms like superivise/wathch over interchangeably. Yet in their terms they mean totally different things. Also very important to always follow the chain of the logic below in order to meet the criteria.... Katy has a severe mental impairment caused by her autism and thus she does (example of behaviour). It is essential you highlight the brain "damage/dysfunction" rather than the autism. So, for instance the first question on the mobility section asks something along the lines of does she/he have a physical disability. The answer is yes! She/he is brain damaged/impaired. (Brain impairment/damage/dysfunction is seen as a "physical" disability. ~ DLA > > > > > Hi, > > Wondered if anyone could enlighten me. My daughter Katy is almost 16 yrs old and has been recieving top level DLA since the age of 3 yrs. We recently had to apply again and her Dla has been reduced to moderate to low support. They say she has now lost the top level because she does not have severe mental impairment. I feel Katy does have severe mental impairment,admittedly over the years with lots of input her condition has improved, but she still requires constant supervision to keep her safe. She has some speech but a very limited understanding of the world. The majority of the skills she now has are through memory rather than understanding. > > I've looked fro a definition of severe mental impairment and what I've come up with says that if the young person is aggressive then they can be classed as having SMI. Katy is not aggressive but the level of support she requires has not decreased. > > I'm worried she will not get the correct support she needs as an adult if DLA continues to be cut. > > Any advise or comments will be very appreciated. > > Thanks Sharon x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2011 Report Share Posted September 7, 2011 Good luck Margaret. It is worth going to appeal. We did this when my son was 8 or 9 and won. Think its been easier since to convince them we require the high rates of disability. Please do get the disability benefits handbook. It will make all hte difference to any appeal becuase you will know what they are looking for and understand their terminology. It is easy to slip up and use terms like superivise/wathch over interchangeably. Yet in their terms they mean totally different things. Also very important to always follow the chain of the logic below in order to meet the criteria.... Katy has a severe mental impairment caused by her autism and thus she does (example of behaviour). It is essential you highlight the brain "damage/dysfunction" rather than the autism. So, for instance the first question on the mobility section asks something along the lines of does she/he have a physical disability. The answer is yes! She/he is brain damaged/impaired. (Brain impairment/damage/dysfunction is seen as a "physical" disability. ~ DLA > > > > > Hi, > > Wondered if anyone could enlighten me. My daughter Katy is almost 16 yrs old and has been recieving top level DLA since the age of 3 yrs. We recently had to apply again and her Dla has been reduced to moderate to low support. They say she has now lost the top level because she does not have severe mental impairment. I feel Katy does have severe mental impairment,admittedly over the years with lots of input her condition has improved, but she still requires constant supervision to keep her safe. She has some speech but a very limited understanding of the world. The majority of the skills she now has are through memory rather than understanding. > > I've looked fro a definition of severe mental impairment and what I've come up with says that if the young person is aggressive then they can be classed as having SMI. Katy is not aggressive but the level of support she requires has not decreased. > > I'm worried she will not get the correct support she needs as an adult if DLA continues to be cut. > > Any advise or comments will be very appreciated. > > Thanks Sharon x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2011 Report Share Posted October 3, 2011 To those who have been successful in DLA application:- Do you mention Bio med and the commitment and management of it or is it safer not to mention it at all. Alison R Quote Link to comment Share on other sites More sharing options...
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