Finances and extra costs
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Not eligible for any help

BendyBethBendyBeth Member Posts: 1 Listener
Hi. I just need somewhere to vent because I'm sitting here crying and feeling completely useless/angry.
I've multiple disabilities - I'm autistic and have genetic physical disabilities - I'm 33. I live with my partner. I lost my ESA (support group) the moment I moved in with my fiance and am now down to subsisting on PIP (standard mobility, high rate care).

I've been studying with the OU for 3 years and just found out that I'm not eligible to apply for a maintenance loan as I started before 2018 so I'm feeling incredibly disappointed about that.

I just feel so angry. Angry that the government expect my partner to be able to support me financially - he's under so much stress trying to earn more and more so that we can move house (my neighbours won't respect our disabled bay and it's causing my mental health to really suffer).

I'm at the end of my tether and am desperate to find some financial help from somewhere. I'm angry that I cannot work I'm angry that I'm autistic, I'm angry that we have a totally heartless government and I'm angry that I can't argue my way out of this financial cul-de-sac I'm in. I'm normally so good at finding loopholes and solutions to problems but I keep hitting a brick wall.

How are we supposed to survive!?


  • April2018momApril2018mom Posts: 2,869 Member
    Hello @BendyBeth?

    Have you called your local council social services team or not? Call Citizens Advice Bureau for advice on benefits. You may also find this article useful to read.
    See this link for more details on PIP.
    Use this tool to work out what benefits you may qualify for as well.
    Are you seeing a therapist or not? It might help you. Alternatively give MIND a call or try finding self help books online, at your local bookshop or ask your local library. There are also mindfulness courses online, look online or ask around. To find out more, please visit this link. Start with your family doctor first. Ask for a referral to mental health services in your area. 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger

    As all areas are now a full Universal Credit area then the only benefit that maybe possible to claim is this but it will depend on your circumstances and partner earnings, whether or not you're entitled to anything.

    Unfortunately, when you moved in with your partner as you were claiming Income Related ESA, which is means tested meant that your partner working would mean that you weren't entitled to claim. Thankfully PIP isn't means tested.

    A benefits calculator will tell you whether or not you can claim UC but you'll need to claim as a couple.

    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • david235david235 Member Posts: 170 Pioneering
    Part-time maintenance loan entitlement for OU students has been a double-edged sword. Those who are entitled to a maintenance loan will be assessed for means-tested benefit as if they claim it, even if they do not claim it - this is because students are expected to live on student finance so far as is possible, not benefits. Before the maintenance loan was launched, most OU undergraduate students found that study with the OU did not affect their benefits. The same is true for all Masters and Doctorate students in England - it is assumed that part of their study loan entitlement (I think it is 30%) is for maintenance for means-tested benefits purposes, even if the entire loan has gone on fees.

    As you have found, many continuing OU undergraduate students who want to claim a part-time maintenance loan cannot do so as the loans are only available to new students or those for whom a break or change in studies means that Student Finance England treat them as a new student.

    It is perhaps worth getting in touch with the OU Disabled Students Group if you have not done so already. They cannot change your loan entitlement, but you might find some helpful support there.

    As @poppy123456 says, if you were on income-related ESA then your benefit entitlement as a member of a couple is means-tested on your joint income. It might be that you would qualify for Universal Credit as a couple - you would need to do the calculations. Like ESA(IR), UC is assessed on joint income as a member of a couple.

    The benefits system is tough on the long-term disabled when it comes to relationships. Many long-term disabled people have had no chance to work and therefore no chance to establish entitlement to non-means tested income replacement benefits such as contributions based ESA or new style ESA. Means-tested benefits are assessed on the joint income and assets of a couple, so one partner working often means there is no entitlement to means-tested benefit.

    I live apart from my long-term partner of almost twelve years and only get to see her rarely - though we hope that will change now that she has moved to a flat that is sufficiently adapted and large enough for me potentially to fit. We have wanted to get married for many years, but feel we cannot do so until we can live together, otherwise we face the awkward situation of trying to persuade DWP that we have got married but are still two single people with no joint financial affairs for benefits purposes. In effect, we would likely be persuading DWP that we got married one day, parted the next, and are now separated.

    If we live together we will get married. We will then be in a somewhat more fortunate position than you are, as we both have contributions based ESA (she's long-term disabled too). Looking forward, she's only just over seven years from State Pension age as she's fifteen years older than I am, at which point she'd move from ESA(Cont) to Retirement Pension and we would move, as things stand, to Pension Credit rather than any ESA(IR) or UC we were on.

    In relation to your parking situation, I presume that your council is one that only marks advisory disabled bays when a bay is requested near a disabled person's home. These bays, which have DISABLED painted by them but no sign are not enforceable in any way. Such a bay is only a request that it is left for a Blue Badge holder.

    If another Blue Badge holder is regularly using "your" bay then there is nothing you can do about that as a matter of parking enforcement.

    If "your" bay is regularly being used by others, then there is an argument to have the bay upgraded to an enforceable bay if it is being used by non-Badge holders (which means that council has go through the process of designating the bay for disabled parking in Traffic Regulation Order) or another bay installed if the current bay is being used by other Blue Badge holders. It might be worth enlisting the help of your local councillor to work with the council to see what can be done; if you are otherwise happy in your home, it might be worth trying to salvage the parking situation rather than move.

    I wish you and your fiancé all the very best.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    @david235 please note the new pension credits changes that took place in may this year.

    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • david235david235 Member Posts: 170 Pioneering
    @david235 please note the new pension credits changes that took place in may this year.
    I had forgotten about that change. That means my partner and I will likely finish up on long-term ESA(IR) or UC if we become a couple - at least until I reach State Pension age in around 25 years' time! I can only hope that we are both still alive then. Sadly, part of loving someone who is significantly older than me is accepting that if we both live a full span, I will spend the last part of my life without this amazing woman. The thought of living without her is not easy. Still, it will be better to have loved and lost than never to have loved.

    My partner has yet to move to PIP from her indefinite DLA award, which is rather old and has no Care component as it does not take account of the significant and sadly permanent deterioration in her health four years ago. We were both too exhausted to deal with a change of circumstances application that would move her to PIP also, for a while, she was scared that she'd move from higher rate Mobility DLA to standard rate Mobility PIP.

    The most likely outcome of a properly written PIP claim now is enhanced rate of both components. We may well get on with preparing a claim, then report a change of circumstances when we are ready rather than waiting for the letter requiring her to claim PIP.

    If my partner successfully obtains PIP Daily Living then she will get lower rate SDP added to her existing ESA(IR) and HB. If we became a couple we would not be moved to UC on the current rules in this scenario because of the entitlement to the SDP and we would be entitled to higher rate SDP as I have enhanced/enhanced PIP. (I don't currently receive SDP because I live with other non-dependant adults).

    It is looking increasngly important that she moves to PIP and hopefully is awarded a Daily Living component (and therefore SDP) before the forced moves to UC start. This is a wake-up call to us both.

    I very much doubt we have seen the last of the changes in the system, also existing claimants are supposed to start to move to UC next year as you have repeatedly noted. Like everyone here, we can only go by the system as it is at the time in question.

    The hardest part of the current situation has been our inability to get married. She nearly died four years ago - and it was very hard not to have all the outward recognition of being married. The hospital she was in did not seem to understand how someone that did not live with her and rarely saw her face to face was nevertheless, by mutual consent, effectively her husband. There were times I longed for a wedding ring to hold on to, especially when it seemed likely she would lose her battle for survival. I know we could wear rings and call each other husband and wife without being legally married, but that is not the right choice for us.

    If it was not for the complications we would have had with the DWP, we would have likely married many years ago even though circumstances would have required us to continue to live apart.
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