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PIP and night care with autism
- Ferryfan
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9 years 11 months ago - 9 years 11 months ago #135099 by Ferryfan
PIP and night care with autism was created by Ferryfan
Hi
Have only recently joined - have quite a lot of complex physical health issues along with Asperger Syndrome. Some of the physical stuff has come to light over the past year but I have been diagnosed with Aspergers in my forties - I am now in my fifties. I will probably put a few new topics in as there are a lot of things that I need assistance with and find it difficult in my 'real' life.
My question is - I have a lot of psychological problems at night, they are worse at night due to not being able to get out and about at night. I live alone, and because of my Asperger Syndrome I find company extremely difficult, in some cases impossible, I function far better alone than I do with anyone around. Depending on what is happening around me during the day has impact on how I feel and sleep at night.
It is very difficult to go anywhere being a woman alone and I do not feel safe going out, even going to the shop in the late evening I find very difficult as I do tend to get approached by people, often beggars and drunks, seem to be magnet for them. This can set off my anxiety which will lead to verbal aggression from me, then followed by a night of disturbed sleep as I am trying to deal with my anxiety over it.
With DLA I said that I prefer to be alone which I do, only because it lowers my anxiety levels and makes me 'normal' so to speak. Before when I was self harming and spending nights in A&E, I was on the high rate, but part of my care plan was trying to manage my anxiety levels so that I didn't do this. So I managed to stop self harming but still have a lot of problems at night when anything goes wrong in the daytime. On review of my DLA they lowered me down to indefinite low rate when basically I am not really any better. I asked for a reconsideration and they basically agreed with the original decision. Shelter were nothing short of useless and suggested I withdraw an appeal which I had started (as they warned me I could lose it totally and was taking a huge risk). I will not use Shelter again, plus the advisor lied to me and told a social worker a totally different version of what she told me. And I found her intimidating.
On phoning the DLA people the woman on the phone said that I was considered "better"!! Which I am not, seems that using the high rate to manage my self harming meant I was better. So I am not able to control the anxiety symptoms that I was able to afford to do before, so it is all flooding back. I have minimal help from an autistic organisation and am quite isolated really. My physical problems are making things worse as well. There is such a lot to say and I could go on and on, but when it comes to night stuff on claiming PIP when I get the claim form what do I say? I need care at night but I am not able - due to my autism to have someone with me in my flat watching over me - this would be impossible. I need to be able to afford to access things at night and be able to help control stuff in the daytime as well. I do try and explain to support staff in the short time I do get a month but I feel they don't see how bad things really are despite me repeating myself.
What I need an answer to is what do I say if I need help at night - as this is often worst - but having someone with me would actually exacerbate the problem due to my autism. Thanks!!
Have only recently joined - have quite a lot of complex physical health issues along with Asperger Syndrome. Some of the physical stuff has come to light over the past year but I have been diagnosed with Aspergers in my forties - I am now in my fifties. I will probably put a few new topics in as there are a lot of things that I need assistance with and find it difficult in my 'real' life.
My question is - I have a lot of psychological problems at night, they are worse at night due to not being able to get out and about at night. I live alone, and because of my Asperger Syndrome I find company extremely difficult, in some cases impossible, I function far better alone than I do with anyone around. Depending on what is happening around me during the day has impact on how I feel and sleep at night.
It is very difficult to go anywhere being a woman alone and I do not feel safe going out, even going to the shop in the late evening I find very difficult as I do tend to get approached by people, often beggars and drunks, seem to be magnet for them. This can set off my anxiety which will lead to verbal aggression from me, then followed by a night of disturbed sleep as I am trying to deal with my anxiety over it.
With DLA I said that I prefer to be alone which I do, only because it lowers my anxiety levels and makes me 'normal' so to speak. Before when I was self harming and spending nights in A&E, I was on the high rate, but part of my care plan was trying to manage my anxiety levels so that I didn't do this. So I managed to stop self harming but still have a lot of problems at night when anything goes wrong in the daytime. On review of my DLA they lowered me down to indefinite low rate when basically I am not really any better. I asked for a reconsideration and they basically agreed with the original decision. Shelter were nothing short of useless and suggested I withdraw an appeal which I had started (as they warned me I could lose it totally and was taking a huge risk). I will not use Shelter again, plus the advisor lied to me and told a social worker a totally different version of what she told me. And I found her intimidating.
On phoning the DLA people the woman on the phone said that I was considered "better"!! Which I am not, seems that using the high rate to manage my self harming meant I was better. So I am not able to control the anxiety symptoms that I was able to afford to do before, so it is all flooding back. I have minimal help from an autistic organisation and am quite isolated really. My physical problems are making things worse as well. There is such a lot to say and I could go on and on, but when it comes to night stuff on claiming PIP when I get the claim form what do I say? I need care at night but I am not able - due to my autism to have someone with me in my flat watching over me - this would be impossible. I need to be able to afford to access things at night and be able to help control stuff in the daytime as well. I do try and explain to support staff in the short time I do get a month but I feel they don't see how bad things really are despite me repeating myself.
What I need an answer to is what do I say if I need help at night - as this is often worst - but having someone with me would actually exacerbate the problem due to my autism. Thanks!!
Last edit: 9 years 11 months ago by .
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- Gordon
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9 years 11 months ago #135137 by Gordon
Nothing on this board constitutes legal advice - always consult a professional about specific problems
Replied by Gordon on topic PIP and night care with autism
Ferryfan
Whilst DLA looked at issues overnight separately from those that a claimant had during the day, PIP does not really make such distinguishments, rather looking at the severity of the problems that the claimants has.
That does not mean that problems overnight will not be considered, but you will perhaps need to explain in more detail why your issues relate to the PIP Descriptors.
Remember all activities must be performed reliable, this means
• Safely – in a fashion that is unlikely to cause harm to themselves or to another person.
• To a necessary and appropriate standard – given the nature of the activity.
• Repeatedly – as often as is reasonably required.
• In a timely manner – in a reasonable time period.
Also, if you cannot perform an activity on the majority of days, then you should not be classed as being able to perform it at all.
You do not need to be actually receiving care in order to need it, so the fact that you cannot have someone in your flat should not impact on your claim.
See our PIP Claim guide for more details.
www.benefitsandwork.co.uk/help-for-claimants/pip
If you have more questions then please reply to this post and we will do our best to help.
Gordon
Whilst DLA looked at issues overnight separately from those that a claimant had during the day, PIP does not really make such distinguishments, rather looking at the severity of the problems that the claimants has.
That does not mean that problems overnight will not be considered, but you will perhaps need to explain in more detail why your issues relate to the PIP Descriptors.
Remember all activities must be performed reliable, this means
• Safely – in a fashion that is unlikely to cause harm to themselves or to another person.
• To a necessary and appropriate standard – given the nature of the activity.
• Repeatedly – as often as is reasonably required.
• In a timely manner – in a reasonable time period.
Also, if you cannot perform an activity on the majority of days, then you should not be classed as being able to perform it at all.
You do not need to be actually receiving care in order to need it, so the fact that you cannot have someone in your flat should not impact on your claim.
See our PIP Claim guide for more details.
www.benefitsandwork.co.uk/help-for-claimants/pip
If you have more questions then please reply to this post and we will do our best to help.
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.
- Ferryfan
- Topic Author
9 years 11 months ago #135507 by Ferryfan
Replied by Ferryfan on topic PIP and night care with autism
Hi Gordon. Thank you for replying, apologies for leaving it so late, wasn't sure if my question had been accepted ot not as it was quite a long post. I do have quite a lot of problems in the daytime regarding my everyday life and this impacts on how I am at night. I have a deep mistrust of a lot of the crisis teams due to one occasion I ended up with a strange social worker turning up at my flat unannounced and it caused mayhem.
What I would like to know is the definition of the word "safe" with regards to benefits. The word safe can mean a few things, I might be safe in regard to being three floors up in a block of flats and safe from muggers on the street at night if I am home, but what with regards to the mental health definition of safe, the word is ambiguous. I said on my DL renewal form that I was safe - safe in regard to being safe from others when I was behind closed doors at home. But since then I have com to realise that their interpretation of safe might be different, than this is what might have caused the decision makers to think I didn't need support at night. So confused!! I spend most nights worrying about the future, and because I have Asperger Syndrome, these are obsessive, practically every night is taken up with these thoughts and other problems are on top of that.
I cannot really discuss self harming on here, but my high rate award helped me to live a life that helped me stop the thoughts about it - and acting on it. Since I cannot do a lot of things on the lower rate, my mental health had gone right back to how it was since before diagnosis. Whole days are now obsessive worrying and I feel I cannot contact people due to past problems. So feel isolated as a result..
I would like to know the decision makers define the word 'safe' as I feel that might have got me marked down.
Again, apologies for late reply, learning to find my way round the site and find my own posts!!
What I would like to know is the definition of the word "safe" with regards to benefits. The word safe can mean a few things, I might be safe in regard to being three floors up in a block of flats and safe from muggers on the street at night if I am home, but what with regards to the mental health definition of safe, the word is ambiguous. I said on my DL renewal form that I was safe - safe in regard to being safe from others when I was behind closed doors at home. But since then I have com to realise that their interpretation of safe might be different, than this is what might have caused the decision makers to think I didn't need support at night. So confused!! I spend most nights worrying about the future, and because I have Asperger Syndrome, these are obsessive, practically every night is taken up with these thoughts and other problems are on top of that.
I cannot really discuss self harming on here, but my high rate award helped me to live a life that helped me stop the thoughts about it - and acting on it. Since I cannot do a lot of things on the lower rate, my mental health had gone right back to how it was since before diagnosis. Whole days are now obsessive worrying and I feel I cannot contact people due to past problems. So feel isolated as a result..
I would like to know the decision makers define the word 'safe' as I feel that might have got me marked down.
Again, apologies for late reply, learning to find my way round the site and find my own posts!!
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- Gordon
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- Posts: 51284
9 years 11 months ago #135517 by Gordon
Nothing on this board constitutes legal advice - always consult a professional about specific problems
Replied by Gordon on topic PIP and night care with autism
Ferryfan
PIP only looks at the word "safely" in the context of the PIP Activities, so as an example would you risk hurting yourself if you were to prepare a meal, perhaps because you are unaware of the danger from knives or the heat from the stove or due to muscle spasms you might burn or cut yourself.
Alternatively, would others be at risk from you if your were to carry out one of the PIP activities, again as an example, when Mixing With Other People could you become abusive or threatening.
So, using your example of living on the third floor and the feeling of safety that this gives you, for this to be taken into account you would need to relate it to the PIP Activities, otherwise the Decision Maker will likely disregard it.
Gordon
PIP only looks at the word "safely" in the context of the PIP Activities, so as an example would you risk hurting yourself if you were to prepare a meal, perhaps because you are unaware of the danger from knives or the heat from the stove or due to muscle spasms you might burn or cut yourself.
Alternatively, would others be at risk from you if your were to carry out one of the PIP activities, again as an example, when Mixing With Other People could you become abusive or threatening.
So, using your example of living on the third floor and the feeling of safety that this gives you, for this to be taken into account you would need to relate it to the PIP Activities, otherwise the Decision Maker will likely disregard it.
Gordon
Nothing on this board constitutes legal advice - always consult a professional about specific problems
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