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Advice please DLA going over to PIP for my son

Janey1969Janey1969 Member Posts: 5 Listener
edited January 31 in PIP, DLA and AA
Hi my name is Jane and I have a15/16 year old son with cerebral palsy, hydrocephalus, autism and also wants to change gender and counts calories. He has wanted to kill himself to which he had private 1 to 1 sessions with a wonderful man at chamns and some great support from school. Over these teenage years it has been really hard work, heartbreaking and exhausting but I wont give up on him. His mental health has struggled badly he hates been disabled and gets so angry. My son walks with a kwalker and has a wheelchair and requires help in various aspects, dressing, washing and more.  I try to go day by day and and at his pace and slowly we are getting there.  I now have this dilemma of swoping from DLA to PIP and they asked do I think he is capable of his own finances. I'd like to say yes and hopefully in a couple of more years I think he may well do so but at present I dont think he is ready. I want him to be independant as possible, he isnt at all street wise and likes to stay in his room with his door shut all the time. My son breaks down quite often about his looks, his weight, his disabilty theres so much going on in his head and I dont know if he knows whether he is coming or going. He is amazing with creativity and English and french etc but when it comes to maths he is totally lost and takes so long to get his head around it all. He sees things 1 way only and once his mind is set that is it. There is no way I could put him on a bus and let him go to a destination on his own he would have a major breakdown.  Sorry to waffle on I just dont know how to answer this letter. I want so much for him to achieve and believe he will eventually it just takes a while longer than other the same age. I need to say no he isnt capable of pip on his own but I feel so awful writing that but I know my son. I just dont know what to do. Can anyone offer any advice please Regards Jane xx -
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Replies

  • lisathomas50lisathomas50 Posts: 4,363 Disability Gamechanger
    @Cher_Scope may know more 
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  • Janey1969Janey1969 Member Posts: 5 Listener
    Thanku xx
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  • calcotticalcotti Member Posts: 2,254 Pioneering
    I am not clear whether you asking about how to fill out the PIP2 health form or about whether you should becoming an appointee to act behalf of your son in respect of his benefits.
    Advice on becoming an appointee is here https://www.gov.uk/become-appointee-for-someone-claiming-benefits. 
    Information I post is for England unless otherwise stated. Rules may be different in other parts of UK.
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  • Cher_ScopeCher_Scope Posts: 4,084

    Scope community team
    edited January 31

    Hi @Janey1969 and welcome to our community.  Thank you for getting in touch 😊

    It’s understandable to be apprehensive about your son reaching an age where he starts transitioning to more ‘adult’ services and provisions such as PIP.  Some people in similar circumstances follow the appointee route, as helpfully linked to by @calcotti above.  This can be stopped should your son reach a point where he can safely manage his money however in the short-term gives you the rights to deal with benefits on his behalf. 

    Are you confident with filling in the PIP2 claim form?  Please let us know if you need any help doing this.  And, I’d recommend you take a look at Scope’s advice in the first instance.

    It’s good to hear that your son received support from CAMHS around his suicidal thoughts.  That must have been a scary time for both of you.  If ever these thoughts do resurface, please get medical help asap and remember support services such as The Samaritans and SHOUT can provide immediate help. 

    You also mentioned that your son wanted to change gender.  Are you getting sufficient support with this?  Mermaids are a great organisation to provide help and resources with this journey and I’d highly recommend taking a look at their website if you haven’t already.  Is the counting of calories something you’ve discussed with your GP too?  I understand this is a habit that can quickly become harmful so I’d recommend speaking more about with a professional when you can.

    I’m going to tag in our resident Cerebral palsy Information Specialist @Richard_Scope so he can add any suggestions, where appropriate.  But please do keep in touch and let us know how you get on.  If you have any questions, fire away.  We’re here to support you 😊

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  • Janey1969Janey1969 Member Posts: 5 Listener
    edited January 31
    Thanku @Cher_Scope my son is under medical supervision re calourie counting and he has an amazing consultant, she is a lovely lady so fingers xd. Also he has a lovely councillor that video times every week for both him and myself and she liases with the school if I need her too, she also has put him in contact with a group re gender change but he felt they weren't right for him and she has just mentioned Mermaids to him this week so we are going to contact them aswell. I think I have tried to cover  every angle without too much pressure on him aswell as his mental health is so important, I dont want him to feel everyone is coming from all angles and it becomes too much. I was also thinking of putting down being an appointee aswell. To people on the outside world he will put on a brave face and tell them he is fine and doesnt need anyone's help but behind closed doors it is a whole different matter. My son will fall to pieces and the outbursts are awful at times its heartbreaking to watch and hurtful aswell because he lashes out at myself and sisters verbally. He just doesnt want to accept his disability and the difficulties he faces. He says he should beable to do everything for himself and hes not a baby anymore. I do show him alternative ways to do things and sometimes we end up laughing and sometimes anger kicks in but we do find ways. He is just so embarrassed even though I reassure him it's fine and acceptable and unique to be different.  I truely thanku for taking the time to answer and sharing your advice it means so much to me. Sometimes a little chat and off load makes all the difference. Thanku again for your kindness Jane xx
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  • Janey1969Janey1969 Member Posts: 5 Listener
    @calcotti thanku for your advice 

    Regards Jane xx
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  • Ross_ScopeRoss_Scope Posts: 4,213

    Scope community team
    Hello @Janey1969

    Wishing you a warm welcome to the community :) 

    I just wanted to see how you are at the moment? Have you found the advice given by members useful? :) 
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  • Janey1969Janey1969 Member Posts: 5 Listener
    @Ross_Scope Hi thanku yes I did find advice useful. I just told the truth and sent it off so fingers xd it gets sorted. These forms are horrible and really upsetting at times especially when cases are genuine. I hear so many stories its worrying. 

    Thanku to everyone that's offered advice. I havent been on here for a week or so as my son got a viral infection that completely knocked him for six but he is all better now thank goodness xxx
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