The 12th Invest in ME Research Conference June, 2017, Part 2
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Disability Benefits Not Enough

Discussion in 'Finances, Work, and Disability' started by Yungas, Oct 3, 2011.

  1. Yungas


    Hi I am living in the U.k, too sick to work, I can barely afford food on my disability allowance.
    Is there any way I can get more benefit money?
  2. Esther12

    Esther12 Senior Member


    I'm currently on DLA, which is for those more seriously ill, but have just reapplied after some improvements to my health, so think that I'm quite likely to be off that now. Food inflation has been really high recently, and they've replaced the old disability benefits with a new system that pays less. A lot of people are going to be really struggling.

    Have you looked in to DLA?

    Have you looked in to charities that provide food parcels?

    Sorry to hear that you're struggling, I know that it's really difficult coping with illness and poverty at the same time.
  3. Wonko

    Wonko Senior Member

    The other side.
    I spent over a year trying to repay credit cards etc., if these are part of the problem I would suggest you contact one of the debt management charities (such as national debt line) for advice.

    My food bill has over doubled in the last year or so despite switching to budget/value products so can confirm that standard disability benefits are insufficient (even with cutting out everything non essential e.g I have basic cable internet, no tv, no phones other than free voip, dont drink, no longer smoke etc. I am still 40 a month short). If anything breaks I'm up shit creak.

    At a minimium you should be claiming housing benefit, council tax benefit and one of the ESA's, you may also be entitled to DLA and SDP (which could be upto another 130ish a week) if you can get them.

    Nice one Esther, I wasnt aware any charities provided food parcels to individuals, will look into it.
  4. justy

    justy Donate Advocate Demonstrate

    Hi Yungas, all i can do is sympathise im afraid, so many of us are in this appaling situation, I am lucky that my husband does work, but he had to change careers a couple of years ago and we took a massive pay cut. we are only just hanging on to our house by the skin of our teeth and can barely afford the basics now. Cant afford new shoes for the kids and ive been sewing my bra up for 2 years now!
    Wonkos list of benefits is good, theres not much else as far as i know.
    A big problem for us is that The govt is time limiting contributions based ESA so i lose mine in January next year as ive already had it for more than a year, that means we lose 90n odd quid a week and we are alreay sinking into debt.
    We are trying to get a lodger in at the moment which isnt ideal and also ive just applied for DLA. I suggest if you are applying for DLA or being reassesed that you join the benefits and work website which costs 19 for the year and entitles you to download step by step guides. I did this as apparently 50% of claimants are turned down a t the first post.

    Hope things improve soon Yungas.
    Take care, Justy.
  5. Carrigon

    Carrigon Senior Member

    PA, USA
    Same bad situation here in the US. I can only afford to buy food half the month. The other half, I'm in big trouble. I cannot afford anything. I can't afford repairs. Nothing. And trying to eat the cheaper junk food only makes me physically worse. None of us can live on a small disability check.
  6. Ocean

    Ocean Senior Member

    I'm in the US so no advice that would be relevant. Just wanted to say I feel you. I'm struggling too after years on disability and after losing my LTD benefits I had through my work. I wish I'd sued for it but was too sick to deal with it. I have government benefits but it's so low compared to what I was getting before through my work plan and even that amount was so low compared to my former salary. Now we are always broke and struggling. It's hard. I hope you will find some support. I have a feeling there is a bit more available in the UK than here but I could be wrong, I don't really know much about it, just an impression I have I guess.
  7. ukxmrv

    ukxmrv Senior Member

    in the UK you need supportive medical experts to write reports and then apply for DLA. Make sure that you are claiming all the benefits that you are entitled to. Their may be a CAB or disabled group close to you who can advise. Food banks can help.
  8. nancyhallatr


    For people in the U.S., there are options if you can do a little work. It took me a while to find something that worked for me and I made a few mistakes along the way. I did, eventually, find that I could do the same type of work I used to do (I'm an art therapist), on a reduced schedule, and make enough to supplement my disability income without exceeding the SSA's threshold for Substantial Gainful Activity.

    The current SGA limit is $1,000. This means that you can earn up to $1,000 a month without losing benefits. It's scheduled to increase to $1010 in 2012. You can deduct medical expenses related to your disability including both prescription and OTC medication, doctor visits, appliances like canes and walkers, and other supplies as long as your doctor will write a letter verifying that these are medically necessary. That way, if you go over the limit, you can offset the over limit amount with expenses. You have to be careful, though...the limit is absolute. If you earn (gross...before taxes and FICA) $1001 and can't offset that $1, you'll lose all benefits for the month.

    The SSA keeps track of your income, presumably through tax returns. If you work, they'll contact you periodically to explain income. They may do that even if you don't work. I had to explain leave with pay when I left my last full time job. I get a form about once every 18 months. I'll list my income for each month in which I earned more than $1,000. A few months later, I'll get a request for receipts and a letter from my doctor (next time, I'm going to attach the receipts and letter to my explanation and see what happens). A month or two after that, I'll get a letter stating that I'm still disabled according to their rules.

    Among my mistakes was an attempt to work about 3/4 time at about $60 an hour. I thought this might enable me to earn quite a bit more than I was getting through SSDI. This was through an outpatient mental health clinic. The SSA allows people to make an unlimited amount of money, and still retain benefits, for a "Trial Work" period of nine months. The Trial Work threshold is $720. Any month in which you earn more than $720 is a trail work month. The months are not consecutive and the time frame is 60 months. One of the advantages of trial work is that you get to keep Medicare for a long time after returning to work, if that's the outcome of your trial work. It would have been a little less than ten years for me.

    I'd used a few trail work months teaching art therapy at a local college. I used the rest building a caseload at the clinic. A few months after I'd used all my trial work months, I was exhausted and very symptomatic. So, I stopped working at the clinic (which was on the verge of bankruptcy anyway). I'd been doing sporadic pool coverage for a small psychiatric hospital. I kept doing that for a while as it allowed me to work when I felt up to it. Eventually, they offered me a 12 hour a week job that has been perfect. My SSDI was restored and I've continued receiving benefits since then.

    I have to plan for my days of work and compensate afterward. The days before and after my mini workweek are spent resting. If I have a symptom flare, I may need more time to recuperate. I walk with a cane due to problems with balance and weakness in my legs. My co-workers have been great about taking over the more physical tasks that I can't accomplish myself. I take a day or two off every month and more during three paycheck months (in order to keep my earnings near or below the threshold). There are times when it takes a physical toll, but being able to do what I love and to be part of a group of other therapists makes me feel great in other ways. I have the benefits of working, yet I can also manage ME symptoms.

    I would urge anyone interested in trying to work to contact your local office of your state department of vocational rehab. They'll help with benefits counseling (to make sure you don't lose SSDI or other benefits), training, and maybe even a computer and some work clothes. They'll pay for tuition, books, etc. if you need more education in order to do a job. They can help you develop a home business if that's something you'd like to try.
  9. SilverbladeTE

    SilverbladeTE Senior Member

    Somewhere near Glasgow, Scotland
    Off topic a bit but...
    As many know, the scum in the UK (Far Right, pretend Conservatives, which they aren't as they're actually selfish low lifes, big difference), have bene pushing more and more against welfare etc.
    So you see all these moronic "Little Britain" types supporting more stringent benefits tests, , etc etc...and who's the FIRST to bleat when it's THEM who needs it, hm?

    Another thing folk don't get is that Welfare is *THE MINIMUM DEEMED NECESARRY TO HAVE A SIMPLE DECENT LIFE*, that is, basics and jsut enough that you cna have small luxuries to keep your spirit going
    Meanwhile...many working folk have ended up on LESS than this, and idiots are getting at the folk on benefits, instead of asking why the hell wages have become almost worthless?

    Average UK Wage rise this year 2.3%, average Exec of a FTSE100 company +50% pay rise same time.
    That my friends, tells you EVERYTHING.

    Stop supporting all the main political parties, they have sold out to the corporations and have become horrors that are gonna drive us all back to the 1930s.

    LOL, society is that bad that folk are getting jealous of folk on gods, how blind, stupid and mssed up has it got? :/

    anyway for anyone in such straights as original poster, try your local CITIZENS ADVICE BUREAU, often good help there :)
  10. AndrewB

    AndrewB Senior Member

    England, UK
    You make a brilliant point in your second to last sentence there, we are actually seeing the start of peopling turning against each other at the behest
    of ridiculous tabloid baiting. Every time i see an article or a news item on benefits, the word 'scrounger' is nearly always attached.
    This plays into the hands of the government who really do plan of cutting welfare by way more, they have infact on just started.
    Im not on DLA, i worked in Media, and now i cannot work, i cant even attend my specialist referrals, ive found myself referred back to my GP
    because im too ill on occasions to meet my appointment obligations. Its madness, we're actually being punished for being sick, both in terms
    of financial help AND in cultural segregation. The one thing that drives me, is i have faith that we will all be made well, and soon.
    I cant see how it works to the governments interests to not look into making us all able to work, we want to work, we want a life, and
    when the Wessley school of treatment is discarded forever, we can look forward to government funded bio chemical research here in the UK.
    This savage disease is costing the UK (the world) too much, and it will only serve to cost more if we don't see a government taking serious steps
    at the very least in effectively treating the worse symptoms. For me its the fatigue, i can deal with pain, sometimes extreme as it is, i can deal with
    the head aches, weight fluctuations and nausea, but this fatigue is the ultimate leveler, its really does stop me in my tracks, literally.
  11. chloe


    Disability benefits are not enough for most people, in the U.S. and U.K. One possible solution is to elect to house ourselves in groups, which would substantially cut down on costs, help with comraderie and socialization, and we might be able to hire people to come in to help us - or on good days, one person could be designated as the person to run errands, etc. I know two people, besides myself, who are in chronic states of financial distress - but cannot find housing.

    We could possibly sort ourselves by gender, and use bedrooms for mostly sleep and put up bunk beds. It could be quite inexpensive to rent an apt with only one bedrrom and get bunkbeds from IKEA.

    It will be years before here is any solution to our problems, and certainly we know that scientists at the CDC and NIH have ignored us. Let's at least try to make ourselves comfortable!

    I'd be interested in people's thoughts. Feel free to send a message to me privately if you are more comfortable with that.

  12. AndrewB

    AndrewB Senior Member

    England, UK
    I firmly believe that these kind of respite centers will need to opened for ME patients exclusively, as the disease effects us all so differently
    in terms of severity and incapacity that i think its too hard on the average hospital to cope with.
    Even those of us living with family know, that there comes a point with repeated on extended peroids of severe relapse, where patients become
    bed bound, that kind of care is difficult to continually provide, when everyone else has to get on with their day to day activities.
    Im 30 years old, and im already a burden on my loved ones. Its something i know we all think about.
  13. Carrigon

    Carrigon Senior Member

    PA, USA
    I would like to live in a building with just other CFIDS/ME patients, but we each need our own room. On a day like I'm having today, I couldn't be near anyone. I'm having a severe flareup. I could never be in the same room with anyone on a daily basis. And when I need to sleep, I need to sleep. And when I'm awake, I'm up at all hours.

    I want to be around my own kind who understand what I go through. I'm sick of people giving me looks when I try to explain it, or they minimize how much we suffer. They don't have it and they don't understand. But others like us, usually do.

    I live now in a mostly senior retirement place with a few scattered disabled. No one understands here. The elderly aren't sick. It's more of an upper class place. They all worked a million years and retired with big pensions and high social security. They have no understanding of people who can't work and get in very little. And the few scattered disabled have all different kinds of disabilities. And most of them seem to think that because I can walk and don't look sick that I'm not really sick. There's just no understanding at all.

    We need housing for low income CFIDS/ME patients.
    GypsyGirl likes this.

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