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Disability, benefits & my rights

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  • Disability, benefits & my rights

    Hello -

    I'm reaching out for some advice on a difficult situation. I feel that I need to give the background to help to understand, so excuse the long-ish post...

    Three years ago, I was marketing earning 45k, enjoying a normal and good quality of life. Unfortunately, in 2016 I became extremely unwell and rapidly decline. I was forced to leave my work and ultimately became housebound. I then spent the next 3 years in a health nosedive, which unfortunately still ongoing. Ultimately I have been diagnosed with Ehlers-Danlos Syndrome (Hypermobile Type) and have a raft of co-morbidities (Dysautonomia, Severe Endometriosis, Functional Gastrointestinal issues etc.) that on top of dozens of daily dislocations are severely impacting my ability to function. I use a wheelchair or crutches to mobilise, I am on morphine & codeine daily to manage my pain, and I need help with most basic things including meal preparation, bathing etc. I was assessed for a higher rate for both Personal Independence Payment elements.

    When I initially became unwell, I was living with my boyfriend of 3 years but opted to move in with my mother so she could take over my growing care needs. However, after taking almost 3 years to work part-time and care for me, she is no longer able to sustain this (financially, physically or mentally) and needs to return to work. Therefore my current set up with my mother will end in December 2019.

    Over the last three years, while living with my mother, I have received Universal Credit with the Limited Capability for Work & Work-Related Activity premium, plus housing benefit towards my half of our private rent. I'm now in a position where my partner has offered to take over my caring needs but if he does this, I will lose ALL my benefits except for Personal Independence Payment. He is expected to fully cover my expenses - rent, household bills, personal expenses. I am left with almost nothing and totally reliant on him. However, if I were to go live alone, I would receive full rent paid by Universal Credit and a further 317.82 (UC) and 328.32 (LCWRA component). On top of that, I would also require a significant amount of daily support from social services and carers which comes at a not insignificant cost to the council.

    What I am asking for your help here with is understanding if my rights are being infringed. I am a citizen of this country with protected status. I have happily paid my taxes while working. I feel that this inane rule by DWP is outdated and possibly infringes on my rights to a relationship, a family and to live a normal life like any other able-bodied citizens. I dream of being able to return to work but realistically this situation could be indefinite. It feels unjust that disabled citizens across the UK are being forced to choose between our basic financial needs being met or our relationships. Not to mention this puts us under much greater risk of domestic abuse, of which disabled persons are already at a much higher risk.

    So the big question: Do I have any grounds to pursue the DWP or Government to change these laws? Or to put forward the fact that allowing me and other disabled citizens to continue to receive Universal Credit and housing benefit, would in fact be a significant cost-saving measure for the DWP and local council.

    I appreciate this is not the normal or straight forward query. So thank you greatly in advance for any time and insight you might be able to offer.
    Tags: None

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