Disabled carer if Disabled daughter and main carer for my Grandson — Scope | Disability forum
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Disabled carer if Disabled daughter and main carer for my Grandson

SandyFoxieD Member Posts: 3 Listener
Hi and sorry for the long rant but need some advice! 
I am disabled but also main carer for my daughter who has Moderate Learning disabilities and on full pip payment,  and main carer to my grandson to prevent him going into social services  care, my husband and I started the Child arrangement order process, sadly my husband died of bowel cancer the week before the court hearing but i have parental responsibility for my grandson and since he was 8 months old. Now he's 2yrs old. I am Struggling financially anyway but have had to apply for PIP after getting the long dreaded letter saying My DLA was coming to an end. Just received my assessment decision and they have only given me standard rate care! Previously I was full DLA indefinitely,  they have stated I choose to not take my medication which is not a choice as I need to keep my grandson safe, being on tramadol, codeine, duloxetine, naproxen, and paracetamol left me unable to function on a daily basis, sedated and unable to think clearly, being widowed and single carer for a young baby I could not risk not waking or falling asleep while little one was up and about! I have the worry of social services hanging over me as I need to apply (when I can afford it ) for a Special guardianship order and a three month investigation from Social services to go through. So no choice. And put up and shut up about how much pain I am in all the time. 
 Little one has developmental delay and speach and language delay and going through assessment himself. 
They have also refused to entertain my mobility as an issue I have degenerative disc disease, cervical and Lumber spine, fibromyalgia, arthritis in my ankles also dyslexic, do not go very far out of the house, also since the assessment have tripped and trapped my sciatic nerve again. But according to them i can walk 50 but no more than 200 metres which is nonsense, I can not walk 100 metre even on a good day! 
I am I'll health retired, got a very small nhs pension, carers allowance, both of which obliterate my UC payment to £95 a month and now trying to do the work capacity DWP assessment just to see if I could get more money than the £160 enhanced care component which I don't actually see due to the deductions of £614! I have just lost bereavement support allowance of £350 and now £295 with the change to pip from full care and mobility payment on DLA.  While I am going to ask for the mandatory re assessment for the pip decision 
I am really struggling to even cover my Bill's let alone food, nappies and Now Nursery lunch money and extra nappies. As little one has his 15hrs nursery placement. 
I am wondering if I should try and return to work with all disabilities, my carer responsibilitys while not being able to leave grandson with his mother due to safeguarding issues.  But if I do full time hours need to find £8000 nursery fees a year! Plus loss my pension and carers allowence, and have to find a job with high enough wage to cover it all, or if part time would still leave me struggling even if I could convince someone to give me a job either full or part time! Don't want to risk debt or worse losing my Husbands house which he work so hard to buy before he died. I really don't know what to do for the best! Everytime I try to reduce my cost it just gets me more financially worse off. Have not even had time to grieve yet either. 


  • thespiceman
    thespiceman Member Posts: 6,390 Disability Gamechanger
    Hello @SandyFoxieD   Pleased to meet you welcome.

    Sorry to hear what you have been through.

    I am one of the team of community champions. We guide, advise and help new members who join the community.

    I would like to add we have members of our community or a member of our team who may offer some advice and guidance.

    On your current situation. 

    I would have suggested speak to CAB or a welfare organisation regarding your benefit issues you are having.

    They do have knowledge and expertise on anything benefits.

    To reassure you I know some one will hopefully be in touch to assist you.

    In due course.

    Please take care.

    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • April2018mom
    April2018mom Posts: 2,869 Member
    Hello @SandyFoxieD. Welcome to Scope. It sounds like you have your hands full!
    Are you receiving benefits for him or not? I have had to reduce my hours in order to attend a lot of hospital appointments with my son but those have reduced lately so I am going back to work in the spring.  My son has a congenital physical impairment. He is going to be three this November, where has the time gone? 
    It is hard, isn’t it? Keep us updated. 
  • paffuto10
    paffuto10 Member Posts: 388 Pioneering

    Hello and welcome. I'm quite new myself but I hear there are advisors on here. 

    So sorry to hear about the sad loss of your husband and that you haven't even had the time to grieve. 

    You seem to have so much going on, I don't even know how you're managing.!! 

    Obviously you need some help and advice but where best to go? 
    I don't know but I can be here for support. 

    I can make one suggestion and that is to contact your MP. We just had the support from ours during our adult son's change from DLA to PIP.

    Son lives in supported living and was given zero points after receiving DLA for 20 years.!! 

    MP contacted them during Mandatory Reconsideration and it all got sorted quite quickly. Now receiving standard rate for both components. (same money he was getting on DLA) 

    Anyway, it might be worth a try and you can do it all by email.

    As for the "not taking meds" they used that one against my son too. 
    Personally I just feel it's the latest excuse.!!

    Jobs: It sounds as though that is too much for you at the moment. Also you could end up worse off and SS may use it against you in some way. 
    (apologies to members who trust SS but I've had some bad experiences with them) 

    Sorry I'm not much help Sandyfoxie but I'm here for support when you need it. x
  • Adrian_Scope
    Adrian_Scope Posts: 8,178

    Scope community team

    Hello @SandyFoxieD, I'm sorry to read how hard things are for you at the moment and that you didn't receive the PIP award you were expecting. 

    Do you need any help with appealing the PIP award? Have you submitted the mandatory reconsideration yet?

    With regards to your grandson, as he is now 2, do you know if you're currently entitled to the 2 year funding? It might help give you some respite. If you did return to work you should be able to get help with childcare costs through Universal Credit. 

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