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It's arrived!

edited 30 November -1 at 1:00AM in Disability Money Matters
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kingfisherbluekingfisherblue Forumite
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edited 30 November -1 at 1:00AM in Disability Money Matters
My son's letter to apply for PIP has finally arrived. He is 21, and has been on an indefinite award since he was eight years old. I've been expecting it since he turned 16, and the brown envelope dropped through the letterbox yesterday.

I'm going to ring for the forms on Monday. I've already started to gather evidence of his needs in relation to the descriptors. I'm waiting for an updated EHCP, so I'll include that along with his prescription sheet, feeding plan from SALT, and other relevant information.

My only concern is that the GP and hospital do not list all of his diagnoses. They tend to list Down's Syndrome and four conditions that he was born with. Those conditions were repaired at birth, but left him with long term problems including dysphagia, abnormal peristalsis, and others. He also has hypermobility, which is not usually mentioned either, despite him needing a wheelchair as a result. He has a GP appointment in a couple of weeks, though, so I am going to discuss it with him then. I'm not sure which GP it will be, as we have a new doctor who replaced our now retired GP. Another doctor in the surgery cannot be described as helpful by any stretch of the imagination. The third doctor is dour, but accurate. None really know my son though. This should be fun!
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  • poppy12345poppy12345 Forumite
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    You don't need a diagnosis to be awarded PIP. It's how those conditions affect your ability to carry out the activities based on the PIP descriptors.


    You said you have relevant evidence to send with the form, which includes the EHCP, which sounds fine to me.


    When filling out the forms you should put as much information as possible about how his conditions affect him, for each descriptor that applies.



    I'd advise you to also add a couple of real life examples of what happened the last time he attempted that activity for each descriptor that applies to him.


    This is exactly what i done for my daughters recent PIP review. I used extra A4 paper for all the information. I wrote it out roughly to start with and then typed and printed it out, so it made it easier to read. Adding her name and NI number on each sheet i used.


    Based on the information i sent and a call to someone on her contact list from the mental health team she had a paper based assessment this time. Award remained the same, Enhanced for both parts.


    This link will help you understand what the descriptors mean too.

    https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria#daily-living-activities


    Good luck.
  • Fizzy11Fizzy11 Forumite
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    I quite agree with Poppy. Give as many examples as you can for each descriptor. I found it helpful to go online & download the descriptors & the meaning from whichever charity you feel is most helpful for your son. I used the Autistic Society & Mind for my son. Don’t forget to base everything on the very worst day & the hardest thing is don’t like the positive parent you are.
  • poppy12345poppy12345 Forumite
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    Fizzy11 wrote: »
    Don’t forget to base everything on the very worst day
    No no no, sorry but that's potentially the worst advice ever and possibly potential benefit fraud.


    PIP isn't about your worst day and you should never base anything on your worst day.



    PIP is about how your conditions affect you at least 50% of the time over a 12 month period. So, it's about your good and bad days.


    If someone fills out their forms based on their worst day and then when it's time for their assessment, it's one of their better days then the HCP is likely to see straight through this. They could think " well, if that's their worst day then they can't be as bad as they say they are"



    Please be honest because it's the only way to be, nothing more, nothing less.
  • kingfisherbluekingfisherblue Forumite
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    Thank you. I'm aware that PIP isn't about diagnooses, but about how you are affected in relation to the descriptors. It would be useful to have all of them listed though - he has several that are never listed. I'll have to use additional paper, and planned to do this anyway. I think I'm going to bullet point everything, as this will be clearer to read.

    I've already started to gather examples. On the budgeting question, I will include how excited he gets when he finds money on the ground - he found 2p once, and thought that he could get a Subway 12" sandwich meal. He handed in his 2p, and then held out his hand for change :D. Obviously I paid the full amount for him, but it shows how he cannot make any budgeting decisions at all.

    I will be basing everything on an average day. To base it on his worst days only would be fraud, and I will not go down that path. In addition, medical evidence would not support that. My son chokes on food due to physical abnormalities in his oesophagus. As he has grown older, the choking has become much less frequent. This is a natural and expected part of one of his conditions. On his worst days, the choking is really quite bad and can last several hours. However, these times are no longer daily and are far less frequent. If I described his worst days only, I would be lying, as it implies that he is like that most of the time. Believe me, I am very thankful that he no longer chokes to the same extent as he used to!

    I am also listing his disability equipment and who provided them. For example, his wheelchair is from NHS wheelchair services, his magnifier is from the Low Vision Unit, and his insoles are custom made via the Orthotics department at the hospital. He also uses a trolley to push things rather than carry them, but I bought that myself. Most things have been provided by outside services rather than by ourselves though.
  • poppy12345poppy12345 Forumite
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    I've already started to gather examples. On the budgeting question, I will include how excited he gets when he finds money on the ground - he found 2p once, and thought that he could get a Subway 12" sandwich meal. He handed in his 2p, and then held out his hand for change :D. Obviously I paid the full amount for him, but it shows how he cannot make any budgeting decisions at all.
    Perfect example! I used a similar example when i filled out my daughters PIP form, including an example of a conversation we'd had a couple of months before.



    She scored points for descriptor C for making budgeting decisions but she can't make them at all, so really should have scored more. As her award was already Enhanced for both i didn't argue obviously.



    Good luck with the claim and if you have any questions please just ask, i'm sure someone will help.
  • venisonvenison Forumite
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    KFB hope it all goes ok for your son I have my DLA to PIP assessment this coming Tuesday.
    Boycott the right wing press !
  • Fizzy11Fizzy11 Forumite
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    poppy12345 wrote: »
    No no no, sorry but that's potentially the worst advice ever and possibly potential benefit fraud.


    PIP isn't about your worst day and you should never base anything on your worst day.



    PIP is about how your conditions affect you at least 50% of the time over a 12 month period. So, it's about your good and bad days.


    If someone fills out their forms based on their worst day and then when it's time for their assessment, it's one of their better days then the HCP is likely to see straight through this. They could think " well, if that's their worst day then they can't be as bad as they say they are"



    Please be honest because it's the only way to be, nothing more, nothing less.
    I’m sorry I disagree. If you read the advice from charities about completing the PIP forms they say use the worse day & it definitely doesn’t tell you to talk about good days. To say I’m committing fraud is disagraceful. With something like Epilepsy there are no good days because a seizure can happen at any time so you live with that day in & day out.
  • edited 16 June 2019 at 6:19AM
    poppy12345poppy12345 Forumite
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    edited 16 June 2019 at 6:19AM
    Fizzy11 wrote: »
    I’m sorry I disagree. If you read the advice from charities about completing the PIP forms they say use the worse day
    I stand by what i say and i'm sure if others read this, they will agree. Never ever fill out forms as if it's your worst day!! I've also never read any advice from any charity that advises you to fill them out using your worst day. This link is on of them.

    https://www.epilepsysociety.org.uk/how-fill-your-pip-form#.XQXQsY8o9PY
  • _shel_shel Forumite
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    Fizzy11 wrote: »
    I’m sorry I disagree. If you read the advice from charities about completing the PIP forms they say use the worse day & it definitely doesn’t tell you to talk about good days. To say I’m committing fraud is disagraceful. With something like Epilepsy there are no good days because a seizure can happen at any time so you live with that day in & day out.

    That's nonsense. Im a form filler for CAB and we never tell clients to fill it out like that. It would be lying aka fraud, liable to get rejected as the assessors know how different things effect people.

    Besides PIP isn't about it effecting you 100% but 50% of the time.
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  • kingfisherbluekingfisherblue Forumite
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    venison wrote: »
    KFB hope it all goes ok for your son I have my DLA to PIP assessment this coming Tuesday.


    Thank you. Good luck on Tuesday, and let us know how your assessment goes.



    KFB x
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