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someone please help!!!

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hi im new to this site and just hoping that someone can help me.  my daughter has had aspergers since birth and has received dla all of her life, with me being her  registered appointee and now following her pip assessment they have said she has scored 0 for every single question and is not entitled to anything at all!!! what am i suppose to do? how can they do this to people? she cant go out anywhere on her own, look after her own money, cook for herself or socialise, yet they are saying she can do all of it!! i really am confused and just dont know what to do. i just cant stop crying. why do pip think its okay to treat people like this? aspergers is not something you grow out of, so why stop my daughters benefits!!! 

Appeal the decision. I know this must be frustrating but you need to stay positive. You know exactly what your daughter is entitled to. If you can gather more evidence than you already have, I suggest you do it no matter how insignificant. Every little bit helps.

One thing I suggest you do (and know this will sound awful so apologies in advance) is to describe every difficulty she has as if it is her worst day. For example, I am very uncomfortable in crowded, loud, bright shops. For the majority of the time I can cope if I listen to loud music on my ipod to counteract it. On my worst day where I am especially sensitive, I will have a severe sensory overload where I can faint or a more embarrassing situation can happen. Of the two scenarios I would put my worst day on my application.

You have to describe the worst possible day of each unique sympton of your daughters aspergers syndrome for them to get a thorough understanding of her day to day life.

I really hope this helped you.

Good luck, stay positive and believe that they will listen to what you have to say xxx

Not everyone who has Aspergers needs dla/pip. I don't know your daughter but can you see why they might have scored her as zero on everything? What happened at previous assessments? I suspect that she may well need and deserve PIP but can you put that into words that will persuade the assessors?

Read the last page of the benefit refusal letter - WHAT TO DO IF YOU THINK THE DECISION IS WRONG; and go for the MANDATORY RECONSIDERATION option as your first step - towards perhaps if refused again the legal appeal route. It might well be usefull to ask - as you are entitled to do - for a full copy of the written documentation, including the face to face assesment record, as led to the current decision.

You can also telephone the NAS (0808 800 4104) and go for option 3.) To make an appointment with a specialist advisor on benefits, etc.

My 40 year old daughter has just been told she cannot get it either, but we are asking for a reconsideration on the following grounds - do the following points sound ok to others who have gone through the process? 

"I write to ask you to reconsider your PIP decision on behalf of my daughter....  The reasons for asking for a reconsideration are as follows:

You gave her 0 out of 12 for communicating.  This is a ridiculous score when she always has to have someone speak for her on the telephone, and has to have someone with her at all times at any official meetings such as the interview with yourselves, doctors appointments, or in any social situation (which she rarely attends unless it is close family because of this). 

You gave her 0 out of 8 for reading and understanding complex written information.  Any letters that arrive at her home have to be fully read by someone else (usually her sister or mother) and explained to her.  All forms have to be filled in by someone else.  And all appeals such as this one have to be made by someone else, as X is not able to fight her own case.

You gave her 4 out of 8 for mixing with other people – the only people X mixes with is her immediate family and very close friends of the family, and when we say mixes she sits alone most of the time and not part of the group, usually doing some craftwork to keep her calm.   We attempted to get her into a daycentre but she had to stop going as she did not mix or speak with the other people that attended or even rarely the carers there, and the noise was too much for her to bear.

You gave her 0 out of 6 for making budgeting decisions unaided, and mention the fact that she can draw money out and pay her gas etc.  She always has to have someone with her to go to the cash machine to draw money out of her account, and to also stop her from spending that money on too many craft products, and to make sure that it is spent on gas, electricity, rent, food etc. first.  You also mentioned the fact that she did not look unkempt or malnourished, which comment we thank you for, as that is through the efforts of her family rather than through X looking after herself.  Yes, we allow her the independence of living by herself, but everything in her life is monitored by her sister or her mother, and that is not what you seem to have understood from the interview, as X does not understand that side of the situation we find ourselves in.

You only gave her 4 out of 12 for planning and following a journey.  One of her sisters came with her to her interview and that journey was planned and followed through by her, not X.  She might not have difficulty in walking but she cannot go on a journey alone, as she would get lost or more importantly have a total autistic meltdown – you are lucky with the stress she was under the day of the interview that you did not witness one but that she was coherent on that occasion."

thankyou for your reply. its so nice to know that people care and are willing to help with advice. i am going to sit down and write down all of my daughters symptoms and like you said, it will give them a thorough understanding of her daily struggles. hopefully they will see that she genuinely deserves/needs pip. 

thankyou again xxx

Giving her zero points is a form of physiological warfare.

For example if you need 8 points and they give you 6 or 7. Then you feel you are close and you feel confident that with a bit of extra effort you can appeal and get 8.

But with zero points, it makes you want to give up hope and think that an appeal is a waste of time because going from zero to 8 is too difficult.