Hi, I need help — Scope | Disability forum
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Hi, I need help

Awilkinson Community member Posts: 8 Listener

I'm [Removed by moderator - personal information] a 27 y/o living in York with my husband and my mother. 
I was recommended this forum because I'm struggling a lot right now and need some actual help. Now, this isn't a cry for help and I don't need a therapist - I need actual assistance.

My husband and I are unemployed, and both of us are disabled. Basically, I get the highest level of PIP available for my mental and physical disabilities that leave me incapable of getting a job. I'm not visibly disabled, so it's always a struggle to get PIP and each assessment worries me. 

We live in my mum's house, which she fully owns with no mortgage. We're still not doing great money-wise, because she bought it a long time ago and it's one of the only positives keeping us from starving. Unfortunately, my mum isn't the best person to live with. She's never taken my disabilities seriously and thinks because I have a good day, I must be faking it for money. She does a bunch of other stuff that I won't get into, but it's abuse, and we have tried communicating in a rational, calm way how she upsets us in the past - which made her ignore us for 2 months solid in the same house, and still has an impact in our interactions to this day. So talking about it with her is out of the question. 

Neither I nor my husband can drive, own a car, or have much money. We live in our overdrafts, I because PIP isn't really enough to live on, and my husband because he's recently unemployed and pays for private therapy and driving lessons to try and "get us out of here" faster by improving himself. 

Because we live in York, the prices are costly on tiny flats, and we don't have the money or resources to move with all our stuff anyway (especially nowhere far, or when our disabilities prevent us from working consistently atm). 

I've looked into disability schemes to help disabled people have lives, and used the benefits calculator in the past, and basically I've been told because I'm married - I'm entitled to no help (outside of PIP).

I might be able to get Universal Credit, but I've been wrongly awarded it in the past and just finished paying off the £2k I owed them and the process would be a stressor for both me and my husband, especially as I would have to keep getting doctor's notes proving I couldn't get a job before eventually going through a very stressful ESA assessment that could take my PIP away if they make a different decision, and I also don't want to push my husband to get better mentally before he's ready with constant universal credit appointments asking him why he hasn't got a job yet. 

I can't even move and get housing benefits, because one of the disclaimers that can stop you getting housing benefit is purposefully putting yourself in a situation in order to get it (even though this is to escape abuse that will very likely help both me and my husband's mental health). I also can't get any help to buy disability schemes with trusts or charities - because I'm married. 

Any benefits that I could get are all completely tossed aside when they know I'm living with my mum, or that I have a husband. But it sucks because that system assumes that disabled people are fine being entirely financially dependent on other people, even if we're stuck in situations like this where we can't leave because we don't have finance. And even a part-time job, or an entry-level full-time job isn't going to make enough money for us to leave. 

I need help, and I'm not sure where to go to get it, since my mum has made a point to make me rely on her my entire life so I can't act without her help. I also can't use phones because of my disabilities, so most services like the doctors, therapists, citizens advice -literally anything people point me to in order to help me- all need phone calls, and any online agents are never available. In the few times I am energetic enough to attempt to get my husband or mum to call them, they're busy, so I'm unable to get the help. 

Is there any service I can use or access to get financial help leaving a situation like this? Or any help at all that doesn't rely on a phone, honestly. And it HAS to be one that helped married people, because people have already suggested I divorce my husband to get more help, and I'm refusing that as he is my only support. We understand we're fortunate in the situation, as mentally exhausting as it is on us, so we're hesitant to leave if it's to become homeless and put ourselves under more mental stress. We've lived away before, and we're aware of how difficult that can be mentally if we aren't properly supported and ready, and we're pretty sure my mum would never let us back if we left again. 

Could my husband maybe get a carer's allowance for looking after me? I get the maximum PIP daily and travel rates.


  • poppy123456
    poppy123456 Community member Posts: 49,593 Disability Gamechanger
    edited June 11
    Your thoughts on there being no entitlement to benefits because you live with your mother aren't correct. Your mothers circumstances will not be taken into consideration.

    I can't even move and get housing benefits, because one of the disclaimers that can stop you getting housing benefit is purposefully putting yourself in a situation in order to get it (even though this is to escape abuse that will very likely help both me and my husband's mental health).

    I'm not sure where you read that but it's not correct. If you find somewhere else to live you will be able to claim housing element of UC. New claims for housing benefit are no longer possible unless you're living in either temporary or supported housing.

    As your husband is no longer working then you will now be entitled to Universal Credit. (assuming you don't have savings/capital of more than £16,000) You will need to claim as a couple because it's means tested. As a couple with no children you will be entitled to £578.82/month (assuming at least one of you are 25 and over) plus your husband will be able to claim carers element of UC which is £185.86/month. This means your maximum UC entitlement will be £764.68/month. If you find someone else to live then this will increase because of the housing element. As a carer he will have no work requirements.

    If you claim UC you will need to make sure you report your health condition, supported by a fit note within 7 days. You will then be referred for the work capability assessment. (like ESA)

    If he claims carers allowance this will be deducted in full from any UC entitlement. He must also make sure he doesn't earn more than £139/week, if he works again in the future.

    If he's worked at some point in the last two tax years 2020/21 and 2021/22 then he will be able to claim New style ESA. He will need a fit note to be able to claim this. However, because of the overlapping benefits rules he won't be entitled to the full amount for the ESA and Carers allowance because they are overlapping benefits. The ESA will also be deducted in full from any UC entitlement.

    He can also look at claiming PIP for himself. However, it's not awarded based on any diagnosis so whether there's any entitlement will depend on how his conditions affect him.

    For help for yourself, you can refer yourself for a needs assessment from your local Authority. You can do this online here. https://www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/getting-a-needs-assessment/

    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • Hannah_Scope
    Hannah_Scope Posts: 5,879 Disability Gamechanger
    Hello @Awilkinson

    I'm so sorry to hear about what you are going through. I see Poppy has given some great advice for the benefits side of your query. I was wondering if you had reached out to anyone with the housing side of your query?

    Shelter have many advice pages I think you'd find useful to read. Including getting on the housing register and a page on emergency grants, loans and money help. Where moving house costs could be covered by a grant. Can I ask, would you still want to live in the York area?
    Hannah - She / Her

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  • Stellar
    Stellar Community member Posts: 111 Courageous
    edited June 12
    to add on to what everything else you've said:

    - you can flee to any other local authority in the country as you'll be fleeing domestic abuse, so if you want or need to move to a completely different part of the country, you can use this is an opportunity

    - your husband is trying to apply individualist logic to a situation where you need a collectivist response from others. It's not going to work. You are dealing with structural barriers, not individual ones. "Bettering himself" to "get out faster" wont be as helpful as he thinks it will. frankly, you will need the money to put towards a private rental.

    He might have to stop paying for / reducing private therapy as well as put driving lessons on pause. There is no way around this. Even if you "get out faster," it'll be many months before you're resettled somewhere else especially if you have to wait for social housing.

    - regarding to services - most of them use phones because it's convenient for them and they forget others cant use phones (to give the most charitable interpretation, a lot of the time they choose not to respect boundaries or access needs to hope people that need help give up). the other alternatives are to use email or go down in person. you also have to borderline harrass them to get anywhere. this is even the case for those who can use phones.

    i get the stress here - if need be maybe contact your MP or local counsellor for help?

    - regarding divorce the reason services are advising you and your husband to divorce is that marriage equality for disabled people dosen't exist in the UK.

    here are a lot of articles online about this topic (like this article and this 2nd article), however a lot of them relate to abuse in a partner, but given your mum is your abuser, there is a lot of overlap.

    as much as you dont want to, you and your husband might have no choice but to divorce so that you can get the money you need. hopefully it dosen't come to that, but you must accept it's a possibility. he can still support you even if you're not married.

  • Alex_Scope
    Alex_Scope Posts: 7,562 Scope online community team
    Thanks for sharing your thoughts on this @Stellar and thanks for reaching out and posting @Awilkinson, I appreciate it's a very difficult situation for you.

    I'd echo much of the support shared here, including Shelter, asking for a needs assessment, and reaching out to your local council or MP.

    While the possibility of divorce might well be an option for some, taking into account marriage inequality, it's important to consider the suggestion of divorcing to access more benefits could come across as unsettling or perhaps hurtful to others. 

    Let us know how things are going for you @Awilkinson and if we can support you further, please ask!
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  • Awilkinson
    Awilkinson Community member Posts: 8 Listener
    Genuinely didn't expect a response, especially one of this scale, so I'm a little overwhelmed right now. I appreciate the options you guys have given me already and it's already proving to be helpful, and soothing for me to cope knowing we actually have options. I know I haven't responded to most posts or comments people have taken the time and effort to send me, and I'm sorry for not giving them the care and attention they deserve. For now, I'm safe and ok and already doing better mentally going forwards. I haven't contacted anybody yet, but these links and waymarkers are sure to help me get started later. Thank you.
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    Please let us know if there's anything else we can do to help @Awilkinson. How have things been for you more recently?
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.


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