- Posts: 4
× Members
New to this forum - DLA to PIP questions
- Luke
- Topic Author
- Offline
Less More
4 years 5 months ago #239838 by Luke
New to this forum - DLA to PIP questions was created by Luke
Hi,
Just made the decision to subscribe to this forum as I have been on indefinite DLA (once a lifetime DLA) award for a long time and I have now received the letter regarding changing from DLA to PIP. Currently I am on middle rate care and lower rate mobility. I have Asperger's syndrome/Autistic Spectrum Disorder with comorbid dyspraxia which was diagnosed at an early age (10 years old) I am now 39 years old. Because of my Asperger's/ASD I can suffer from severe anxiety episodes which can be debilitating and I am on SSRI medication to control this (Escitalopram 20mg - which had to be increased to the highest dose due to me suffering from debilitating health anxiety (hypochondria). Considering my history of anxiety I have been very anxious about the whole process since I first heard of PIP being introduced a few years back even though my award would not be looked at for a long time. This even resulted in me being anxious in the workplace about PIP - I have been working for more than 11 years I currently work part time 3 days a week and with the change to PIP imminent I have again been getting anxious this week.
I do have some questions about some of the descriptors and if I meet them or not. For example for the mobility component of PIP there is a descriptor that says "1b Needs prompting to undertake any journey to avoid overwhelming psychological distress to the claimant". I can travel around on my own but every time I travel my mum has to make sure that I have my personal possessions on me like my phone and wallet because in the past if I loose them I can get very, very anxious to the stage that I stamp my legs up and down on the floor and scratch my neck violently which is self harm behaviour and constantly seeking reassurance. In this case my mind goes blank and I would find it a lot more stressful to travel on public transport in these circumstances. I also need to be told to get my bus and train incase I miss an appointment which could again result in severe anxiety. Would this count as "overwhelming psychological distress" and "prompting" for the purposes of PIP? If this was the case it only scores 4 points so I have been worried that I am likely to loose the mobility component but I have now been looking at two other descriptors that may apply to me " 1d Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid" - do you think I qualify for this and hence the standard rate on the grounds that I could say that I can undertake familiar journeys on my own but still need prompting as above but if I am on an unfamiliar journey the majority of the times I have someone with me - e.g. if I am going for a job interview my dad would normally give me a lift and give me directions if not he would tell me what train or bus to get and check on me to see if I have my personal possessions. Also if I am a strange city I am highly likely to be with my parents who will help me find my way back to the station/hotel etc. and make that there are no threats to my safety e.g. I have a high degree of social naivety due to my autism in which I cannot understand body language so I and oblivious to potential danger from others so should I qualify for 1d on the basis of this alone? I am also asking if I may be entitled to the enhanced mobility rate on safety grounds - as I have read about a recent tribunal decision that takes into account the severity of harm and if I get standard rate should I try an MR/appeal foe Enhanced on this basis? - the relevant descriptor here is "1f Cannot follow the route of a familiar journey without another person, assistance dog or orientation aid" - As I explained I do travel on buses and trains on my own sometimes but a lot of the time I have a friend or my parents with me. My parents look out for me because I am sometimes distracted easily by external stimuli and I might not look where I am going so they sometimes have to tell me not to. Because of my autism I am very socially naïve and I can easily be taken advantage of by beggars asking for money and because I find it very difficult to understand body language I would be oblivious to risk. Even though the risk of it happening on any journey may be low, I believe the potential harm resulting may be severe (assault, sexual exploitation) or in the case of a severe anxiety episode as explained above the risk of me harming others or being hit by a vehicle - I was looking at this ruling - link here - www.benefitsandwork.co.uk/news/3611-safe...-many-more-claimants which gives the example of a person with epilepsy in the bath and the theoretical risk of the house going on fire which although small presents the serious risk of harm - so does anyone think I may be entitled to enhanced rate mobility on those grounds as I normally have someone with me on over half my journeys I think that is part of the criteria?
For the Daily Living component - I will give a few examples which I believe are relevant to my condition - engaging with other people - engaging with other people face to face - do you believe I meet criteria 9) c) "Needs social support to engage with other people" - again, because of my condition I cannot understand body language and need someone else to explain things to me like when I know to speak especially in a group conversational situation otherwise I will interrupt the conversation. I have difficulty knowing if I am speaking to much or to little and my parents frequently have to tell me is I am talking too much in a group conversational situation. I also need to be told if I am speaking to fast or to slow. I can also get very anxious if I feel left out in a social situation and could have anxiety attacks if someone did not help me like friends or my parents. Should this qualify as "social support" and not "prompting" getting me 4 points? Another question if about "communicating verbally" - when I have been taking phone calls in work I can find it difficult to understand what is being said if the call is very complicated meaning that have made mistakes in the past and have needed someone to help me to break the information down into more manageable chunks this is due to the theory of mind and executive function deficit of Aspergers and my dad sometimes has to explain to me complicated instructions like where to go to get shopping and I have to ask him to repeat himself. I thought I should qualify under this but got a bit worried when I read the guidance defining "complex verbal information" as more than one sentence! Do you think I should qualify. Again because of the executive functioning deficits of my Aspergers I find it very difficult to motivate myself and need to be told by my parents when to wash and bathe and I also need assistance - in the shower my Mum washes me under my arms - would that qualify for 4 points under "4f) Needs assistance to wash their body between the shoulders and waste" . I certainly need supervision and prompting under 4)c) I find unassisted washing and bathing difficult also due to my dyspraxia and short attention span. Same for washing and dressing - e.g. I cannot put on a tie without physical assistance and my parents often need to physically intervene to make sure I am dressed properly including making sure my coat is on properly - would this meet "Needs assistance to be able to dress and undress the upper body" and would a belt or tie be defined as this and entitle me to 4 points? Asking for any advise to put my mind at rest and what rate should I get? Obviously I have been very anxious about my PIP migration for a long time, mostly worried about loosing money but could I get more than on DLA and if I end up with the same is it worth appealing on the descriptors I have outlined above (if I did not get those full points) Also because I was on lifetime DLA and I have autism which is a lifelong condition which will not change could I be eligible for a long PIP award e.g. 10 or 6 years and could I be exempt from a face to face assessment as me and my parents are concerned that I might get someone who does not understand ASD and end up with me not getting the award I am entitled to resulting in a lot of stress for me and my family. I am going to mention that on the form, what are my chances of getting no face to face also asking how long should the process take I have been asked to post the form by 15th November I will keep you posted and appreciate any advise especially if it results in a higher award eventually being granted.
Regards,
Luke
Just made the decision to subscribe to this forum as I have been on indefinite DLA (once a lifetime DLA) award for a long time and I have now received the letter regarding changing from DLA to PIP. Currently I am on middle rate care and lower rate mobility. I have Asperger's syndrome/Autistic Spectrum Disorder with comorbid dyspraxia which was diagnosed at an early age (10 years old) I am now 39 years old. Because of my Asperger's/ASD I can suffer from severe anxiety episodes which can be debilitating and I am on SSRI medication to control this (Escitalopram 20mg - which had to be increased to the highest dose due to me suffering from debilitating health anxiety (hypochondria). Considering my history of anxiety I have been very anxious about the whole process since I first heard of PIP being introduced a few years back even though my award would not be looked at for a long time. This even resulted in me being anxious in the workplace about PIP - I have been working for more than 11 years I currently work part time 3 days a week and with the change to PIP imminent I have again been getting anxious this week.
I do have some questions about some of the descriptors and if I meet them or not. For example for the mobility component of PIP there is a descriptor that says "1b Needs prompting to undertake any journey to avoid overwhelming psychological distress to the claimant". I can travel around on my own but every time I travel my mum has to make sure that I have my personal possessions on me like my phone and wallet because in the past if I loose them I can get very, very anxious to the stage that I stamp my legs up and down on the floor and scratch my neck violently which is self harm behaviour and constantly seeking reassurance. In this case my mind goes blank and I would find it a lot more stressful to travel on public transport in these circumstances. I also need to be told to get my bus and train incase I miss an appointment which could again result in severe anxiety. Would this count as "overwhelming psychological distress" and "prompting" for the purposes of PIP? If this was the case it only scores 4 points so I have been worried that I am likely to loose the mobility component but I have now been looking at two other descriptors that may apply to me " 1d Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid" - do you think I qualify for this and hence the standard rate on the grounds that I could say that I can undertake familiar journeys on my own but still need prompting as above but if I am on an unfamiliar journey the majority of the times I have someone with me - e.g. if I am going for a job interview my dad would normally give me a lift and give me directions if not he would tell me what train or bus to get and check on me to see if I have my personal possessions. Also if I am a strange city I am highly likely to be with my parents who will help me find my way back to the station/hotel etc. and make that there are no threats to my safety e.g. I have a high degree of social naivety due to my autism in which I cannot understand body language so I and oblivious to potential danger from others so should I qualify for 1d on the basis of this alone? I am also asking if I may be entitled to the enhanced mobility rate on safety grounds - as I have read about a recent tribunal decision that takes into account the severity of harm and if I get standard rate should I try an MR/appeal foe Enhanced on this basis? - the relevant descriptor here is "1f Cannot follow the route of a familiar journey without another person, assistance dog or orientation aid" - As I explained I do travel on buses and trains on my own sometimes but a lot of the time I have a friend or my parents with me. My parents look out for me because I am sometimes distracted easily by external stimuli and I might not look where I am going so they sometimes have to tell me not to. Because of my autism I am very socially naïve and I can easily be taken advantage of by beggars asking for money and because I find it very difficult to understand body language I would be oblivious to risk. Even though the risk of it happening on any journey may be low, I believe the potential harm resulting may be severe (assault, sexual exploitation) or in the case of a severe anxiety episode as explained above the risk of me harming others or being hit by a vehicle - I was looking at this ruling - link here - www.benefitsandwork.co.uk/news/3611-safe...-many-more-claimants which gives the example of a person with epilepsy in the bath and the theoretical risk of the house going on fire which although small presents the serious risk of harm - so does anyone think I may be entitled to enhanced rate mobility on those grounds as I normally have someone with me on over half my journeys I think that is part of the criteria?
For the Daily Living component - I will give a few examples which I believe are relevant to my condition - engaging with other people - engaging with other people face to face - do you believe I meet criteria 9) c) "Needs social support to engage with other people" - again, because of my condition I cannot understand body language and need someone else to explain things to me like when I know to speak especially in a group conversational situation otherwise I will interrupt the conversation. I have difficulty knowing if I am speaking to much or to little and my parents frequently have to tell me is I am talking too much in a group conversational situation. I also need to be told if I am speaking to fast or to slow. I can also get very anxious if I feel left out in a social situation and could have anxiety attacks if someone did not help me like friends or my parents. Should this qualify as "social support" and not "prompting" getting me 4 points? Another question if about "communicating verbally" - when I have been taking phone calls in work I can find it difficult to understand what is being said if the call is very complicated meaning that have made mistakes in the past and have needed someone to help me to break the information down into more manageable chunks this is due to the theory of mind and executive function deficit of Aspergers and my dad sometimes has to explain to me complicated instructions like where to go to get shopping and I have to ask him to repeat himself. I thought I should qualify under this but got a bit worried when I read the guidance defining "complex verbal information" as more than one sentence! Do you think I should qualify. Again because of the executive functioning deficits of my Aspergers I find it very difficult to motivate myself and need to be told by my parents when to wash and bathe and I also need assistance - in the shower my Mum washes me under my arms - would that qualify for 4 points under "4f) Needs assistance to wash their body between the shoulders and waste" . I certainly need supervision and prompting under 4)c) I find unassisted washing and bathing difficult also due to my dyspraxia and short attention span. Same for washing and dressing - e.g. I cannot put on a tie without physical assistance and my parents often need to physically intervene to make sure I am dressed properly including making sure my coat is on properly - would this meet "Needs assistance to be able to dress and undress the upper body" and would a belt or tie be defined as this and entitle me to 4 points? Asking for any advise to put my mind at rest and what rate should I get? Obviously I have been very anxious about my PIP migration for a long time, mostly worried about loosing money but could I get more than on DLA and if I end up with the same is it worth appealing on the descriptors I have outlined above (if I did not get those full points) Also because I was on lifetime DLA and I have autism which is a lifelong condition which will not change could I be eligible for a long PIP award e.g. 10 or 6 years and could I be exempt from a face to face assessment as me and my parents are concerned that I might get someone who does not understand ASD and end up with me not getting the award I am entitled to resulting in a lot of stress for me and my family. I am going to mention that on the form, what are my chances of getting no face to face also asking how long should the process take I have been asked to post the form by 15th November I will keep you posted and appreciate any advise especially if it results in a higher award eventually being granted.
Regards,
Luke
Please Log in or Create an account to join the conversation.
- Gordon
- Offline
Less More
- Posts: 51067
4 years 5 months ago #239883 by Gordon
Nothing on this board constitutes legal advice - always consult a professional about specific problems
Replied by Gordon on topic New to this forum - DLA to PIP questions
Luke
Welcome to the forum, you might want to have a look at the following FAQ which explains where everything is
Welcome to Benefits and Work
In case you are not aware, your real name appears to be showing in the forum, if you want to change this then follow the instructions in the following FAQ
My full name is showing, how can I stop it?
First of all, have you looked at our PIP Claim guide?
www.benefitsandwork.co.uk/help-for-claimants/pip
We can't tell you which of the activities you should aim for and what you should write, our role is to make sure that you have the information and understanding to make these decisions yourself.
I've tried to answer the issues that you have raised but your post is very long and the large blocks of text make it difficult to follow, so if I have missed anything then re-post by replying to this post.
For the Going Out activity, you will need to pick your battle. Either you are unable to undertake a journey (leave your home) or you are unable to follow a route to a destination, you cannot argue both as they are considered to be mutually exclusive of you.
In both cases, you will need to show that would suffer "overwhelming psychological distress" and that it is this OPD that prevents you from completing the task. Severe anxiety may count as this but it is not clear from your post whether this prevents you continuing or not.
You may be able to use the arguments that you mention in your post in regard to undertaking a journey but it is important that you realise that it is your ability to complete the journey that is being assessed so you must concentrate on the issues that prevent you doing this. The things you mention appear to be a hindrance and I am sure that they are significant to you but they do not necessarily top you on your route.
You may be able to show that you need Social Support but your post suggests that you can communicate with others in a social situation, just not very well and this activity is about your not be able to do this at all, so you may need to rely on the "reliability" criteria these are explained in our guide.
I think that you can score for prompting due to your condition but you will need to explain why you need and what would happen if you do not receive it in some detail.
I'm not sure that you will score higher for problems with bathing as those assessing you will be looking at primarily physical problems that prevent you from washing parts of your bodies, I'm not saying that you cannot score for this but you will need to explain in detail and I think you would have to show a recognised condition such as OCD or body dysmorphia.
Again, communicating is about your physical ability to interact verbally with someone else, the standard required to score is quite high, see our guide for more info.
Gordon
Welcome to the forum, you might want to have a look at the following FAQ which explains where everything is
Welcome to Benefits and Work
In case you are not aware, your real name appears to be showing in the forum, if you want to change this then follow the instructions in the following FAQ
My full name is showing, how can I stop it?
First of all, have you looked at our PIP Claim guide?
www.benefitsandwork.co.uk/help-for-claimants/pip
We can't tell you which of the activities you should aim for and what you should write, our role is to make sure that you have the information and understanding to make these decisions yourself.
I've tried to answer the issues that you have raised but your post is very long and the large blocks of text make it difficult to follow, so if I have missed anything then re-post by replying to this post.
For the Going Out activity, you will need to pick your battle. Either you are unable to undertake a journey (leave your home) or you are unable to follow a route to a destination, you cannot argue both as they are considered to be mutually exclusive of you.
In both cases, you will need to show that would suffer "overwhelming psychological distress" and that it is this OPD that prevents you from completing the task. Severe anxiety may count as this but it is not clear from your post whether this prevents you continuing or not.
You may be able to use the arguments that you mention in your post in regard to undertaking a journey but it is important that you realise that it is your ability to complete the journey that is being assessed so you must concentrate on the issues that prevent you doing this. The things you mention appear to be a hindrance and I am sure that they are significant to you but they do not necessarily top you on your route.
You may be able to show that you need Social Support but your post suggests that you can communicate with others in a social situation, just not very well and this activity is about your not be able to do this at all, so you may need to rely on the "reliability" criteria these are explained in our guide.
I think that you can score for prompting due to your condition but you will need to explain why you need and what would happen if you do not receive it in some detail.
I'm not sure that you will score higher for problems with bathing as those assessing you will be looking at primarily physical problems that prevent you from washing parts of your bodies, I'm not saying that you cannot score for this but you will need to explain in detail and I think you would have to show a recognised condition such as OCD or body dysmorphia.
Again, communicating is about your physical ability to interact verbally with someone else, the standard required to score is quite high, see our guide for more info.
Gordon
Nothing on this board constitutes legal advice - always consult a professional about specific problems
The following user(s) said Thank You: Becky
Please Log in or Create an account to join the conversation.
- Luke
- Topic Author
- Offline
Less More
- Posts: 4
4 years 5 months ago #239936 by Luke
Replied by Luke on topic New to this forum - DLA to PIP questions
Hi,
Still makes me a bit concerned that I will get a downgraded award from my current DLA award as I have been worrying about the change for years. I have had several other adverse experiences in the past whilst out and about including walking into a road sign whilst not concentrating due to a distraction, another event in which I caused a minor injury to a small boy due to an object I was carrying and I have also lost my dad at a football match in which I was late for the kick off in all these times I got very worked up and I was with my parents at the time. Could it be argued that I would get so anxious I would not be able to complete the journey reliably due to my mind going blank and potentially being a risk to others on public transport as in most of these cases I was accompanied by someone who could calm me down if I was alone I may have needed my dad to collect me or run me home? I have also got lost even in familiar places and got very anxious as a result without someone to guide me could this help? From what Gordon has said I now feel more worried about loosing support, I am in the process of filling in a detailed PIP2 form but because of my anxiety issues I can get worried about being worse off as I have been for years. If I did get an adverse PIP decision which resulted in a reduced award from my current DLA award I will right to my MP (as well as go to MR/appea of coursel) as I may think the new system is not fit for purpose for people with autistic spectrum conditions as it should take into account the social naivety of people with ASD more when giving an award - a lot of people with Aspergers like me and my friend although they are capable of following a route and planning a route they have the potential to encounter many dangerous situations out of doors due to thier lack of social understanding - my Mum would never let me wonder around a strange city on my own and my friend who is also going through the same process and also has ASD has actually recently been assaulted physically recently for this reason but he can plan and follow journeys very well most of the time do you think the system should be fairer for those with an ASD?
Still makes me a bit concerned that I will get a downgraded award from my current DLA award as I have been worrying about the change for years. I have had several other adverse experiences in the past whilst out and about including walking into a road sign whilst not concentrating due to a distraction, another event in which I caused a minor injury to a small boy due to an object I was carrying and I have also lost my dad at a football match in which I was late for the kick off in all these times I got very worked up and I was with my parents at the time. Could it be argued that I would get so anxious I would not be able to complete the journey reliably due to my mind going blank and potentially being a risk to others on public transport as in most of these cases I was accompanied by someone who could calm me down if I was alone I may have needed my dad to collect me or run me home? I have also got lost even in familiar places and got very anxious as a result without someone to guide me could this help? From what Gordon has said I now feel more worried about loosing support, I am in the process of filling in a detailed PIP2 form but because of my anxiety issues I can get worried about being worse off as I have been for years. If I did get an adverse PIP decision which resulted in a reduced award from my current DLA award I will right to my MP (as well as go to MR/appea of coursel) as I may think the new system is not fit for purpose for people with autistic spectrum conditions as it should take into account the social naivety of people with ASD more when giving an award - a lot of people with Aspergers like me and my friend although they are capable of following a route and planning a route they have the potential to encounter many dangerous situations out of doors due to thier lack of social understanding - my Mum would never let me wonder around a strange city on my own and my friend who is also going through the same process and also has ASD has actually recently been assaulted physically recently for this reason but he can plan and follow journeys very well most of the time do you think the system should be fairer for those with an ASD?
Please Log in or Create an account to join the conversation.
- BIS
- Away
Less More
- Posts: 7610
4 years 5 months ago #239952 by BIS
Nothing on this board constitutes legal advice - always consult a professional about specific problems
Replied by BIS on topic New to this forum - DLA to PIP questions
Hi Luke
Unfortunately, we cannot alleviate the stress you feel about the whole process or the worry you feel about being downgraded. Some people are downgraded when they move across from DLA and others aren't, but we do not have any breakdown about the figures from one condition to another. All you can do is put in as much information as you can, detailing just as you have done here, the difficulties you experience when you are out and about. Also, make sure that your mum puts in a letter on your behalf - also detailing what she knows about the challenges you face and the fact she would never allow you to wander alone in a strange place as this would potentially put you in danger.
BIS
Unfortunately, we cannot alleviate the stress you feel about the whole process or the worry you feel about being downgraded. Some people are downgraded when they move across from DLA and others aren't, but we do not have any breakdown about the figures from one condition to another. All you can do is put in as much information as you can, detailing just as you have done here, the difficulties you experience when you are out and about. Also, make sure that your mum puts in a letter on your behalf - also detailing what she knows about the challenges you face and the fact she would never allow you to wander alone in a strange place as this would potentially put you in danger.
BIS
Nothing on this board constitutes legal advice - always consult a professional about specific problems
Please Log in or Create an account to join the conversation.
- Gordon
- Offline
Less More
- Posts: 51067
4 years 5 months ago #239971 by Gordon
Nothing on this board constitutes legal advice - always consult a professional about specific problems
Replied by Gordon on topic New to this forum - DLA to PIP questions
Luke
It is important that you understand that PIP is a very different benefit from DLA, the intention of the Government when they introduced the new benefit was to reduce the disability benefits budget by at least 20%, so the criteria is a lot stricter than DLA and the assessment process is now task orientated.
I'm not saying that you cannot score for the issues that you mention but you must explain your problems in terms that fit with the Descriptors that you are being assessed against, so as an example; your nearly losing your father at a football match is not a scenario that fits with the Going Out activity and you risk those assessing you dismissing your answers because they believe you have not understood the requirements.
So make sure you understand what the Descriptors say, that you target the Descriptors that you believe that you can reasonably meet and that you follow the advice in our Claim guide to help you answer the questions.
Gordon
It is important that you understand that PIP is a very different benefit from DLA, the intention of the Government when they introduced the new benefit was to reduce the disability benefits budget by at least 20%, so the criteria is a lot stricter than DLA and the assessment process is now task orientated.
I'm not saying that you cannot score for the issues that you mention but you must explain your problems in terms that fit with the Descriptors that you are being assessed against, so as an example; your nearly losing your father at a football match is not a scenario that fits with the Going Out activity and you risk those assessing you dismissing your answers because they believe you have not understood the requirements.
So make sure you understand what the Descriptors say, that you target the Descriptors that you believe that you can reasonably meet and that you follow the advice in our Claim guide to help you answer the questions.
Gordon
Nothing on this board constitutes legal advice - always consult a professional about specific problems
Please Log in or Create an account to join the conversation.
- Luke
- Topic Author
- Offline
Less More
- Posts: 4
4 years 5 months ago #240004 by Luke
Replied by Luke on topic New to this forum - DLA to PIP questions
Hi,
Thanks for the information feeling more relaxed about it now as their are plenty of options available. I think that the executive functioning impairment aspect of my Asperger's should be key in my application or any appeals or MRs as even though I am intellectually capable of undertaking the task it can often take longer for me to do so e.g. it takes me longer to work out change without using a calculator lol. It also takes me longer to process verbal instructions these things are very common with ASD and as it could be deemed I am not performing these tasks reliably it could be deemed I am not able to perform the task reliably for the purposes of PIP? - therefore scoring points? Could I also use short term working memory as a ground to say I have difficulty with planning a journey as it could take me longer to do so without assistance?
Luke
Thanks for the information feeling more relaxed about it now as their are plenty of options available. I think that the executive functioning impairment aspect of my Asperger's should be key in my application or any appeals or MRs as even though I am intellectually capable of undertaking the task it can often take longer for me to do so e.g. it takes me longer to work out change without using a calculator lol. It also takes me longer to process verbal instructions these things are very common with ASD and as it could be deemed I am not performing these tasks reliably it could be deemed I am not able to perform the task reliably for the purposes of PIP? - therefore scoring points? Could I also use short term working memory as a ground to say I have difficulty with planning a journey as it could take me longer to do so without assistance?
Luke
Please Log in or Create an account to join the conversation.
Moderators: Gordon, Gary, BIS, Catherine, Wendy, Kelly, greekqueen, peter, Katherine, Super User, jimmck, Chris