Falling through the cracks

I am that person. The one that slips through all the cracks. The one that no one can help because of the stupid rules. I don't meet the criteria for anything, and I'm just supposed to survive.

Here's the outline. I'm too ill to work. Simple. Dr won't let me, and unless my health improves significantly this is likely to be the case for all of my life. Maybe in the future if the government realise that instead of trying to fit the disabled person around the job, but instead adapts the job to fit the disabled person, maybe then there would be a chance. I would love to do a job from home, maybe something based on writing, but it would have to be flexible (some days I can't get out of bed), I'd have to have the right equipment (some days I can't use a computer) not to mention I also have a child! I would love to do a documentary to raise awareness of M.E (but would rather not star in it!). But these things are just not possible unless the governments puts provisions in place. Don't get me wrong, it is easier now than say 10/20 years ago for someone with a disability to find work. But it still remains practically impossible for someone with a varying illness, or an invisible illness to find a job or accepting employers. I mean, seriously, who wants to hire someone that has to be honest in the interview and say that they would probably require an extensive time off sick? I know I wouldn't.

Because of this inability to work, I can't get job seekers allowance, or income support. The job centre have said that I simply can't have it if I can't look for work. Ah huh! I hear you all say, ESA! Well no. My husband does work, as my dad is retired and I have a lot of family support, and he works full time. But he only earns £13,000 a year before tax. Our rent is £695 and that doesn't include that fact we have to pay bills, get food, o yeah and once again we have a child! If you want to claim ESA, you can't have a partner who works full time, they have to work 24 hours or less, regardless of what they earn. So yeah, can't get that either. This leaves me in the situation where I can't work, so can't claim the benefits meant to help those looking for work, but I can't claim the benefit meant to be there to support those who can't work. So what do I do? Not eat? Not have electric or heating? The answer, for me at least, is that I have parents that can help me. But that won't last forever and others aren't as lucky.

When Niamh was born we became entitled to working families tax credits, child tax credits and child benefit. These, with the exception of child benefit, are meant to top up what you already earn. Well. I suppose it does do that, but we barely earn enough to live. With child benefit being capped, the child tax credits are used to feed and clothe Niamh, none of it whatsoever is used for anyone other than her. The working tax credits are very minimal and we use them to eat. We do receive housing benefit and council tax benefit, but a minimal amount, nothing near what our rent and council tax actually is.

I did get DLA, but that is now being re-assessed and I'm completely frightened about the prospect of loosing it. It is literally the only income I have. When they say the cost of living is approximately 25% higher for disabled people. They're not wrong. If I can't have someone take me to an appointment, I can't get public transport alone because I can't push my wheelchair whilst holding on to Niamh. Not to mention that pushing a self propelled wheelchair is exhausting! So I need a taxi, an expense as it is, but when you add that it has to be a specially adapted taxi, the fare then tends to increase. I have had normal taxis before that have refused to take me, even though I can transfer from the wheelchair, and don't have to be in it all that time. They have even refused when Chris has been with me to fold the wheelchair up and place it in the boot. They don't need a special licence for me, but the company policy is that wheelchair users can only go in specially adapted cabs, of which there are one, maybe two. Less available, and more expensive, brilliant!

Then there's food. Well, my digestive system often decides it hates me, and with chemical sensitivities and food allergies, eating became more expensive. I HAVE to eat organic otherwise I seriously suffer for it. Most of the time obviously can't afford to do this so I just have to suffer nausea and stomach cramps.

Then, theres medication. I have an awful lot of prescription medication. I used to be on pre-pay because it worked out cheaper. But you still have to have the money when it comes up for renewal. Then I had maternity excemption, which ran out a couple of weeks ago when Niamh turned one. Lucky for us though being in child tax credits and working tax credits put us in the "too poor to afford prescriptions" bracket. Otherwise there is NO way I would be able to afford the medication I'm on that helps me SO much. Then theres the vitamins that I'm on that I can't get on prescription. I am on high doses of manyy vitamins, (Co-enzyme Q10, Vitamin C, Vitamin D, Calcium and Evening Primrose Oil) which are expensive. I also depend on melatonin to sleep and I have to import this as you can't buy it in the chemist or get it on an adult prescription. I can't even add up what this cost me a month.

In the past I have had to buy equipment to improve my life as the wait for it has been so long. Crutches and my wheelchair to name a couple. This means that my wheelchair probably isn't as effective as one prescribed and made for me, but I didn't want to be housebound for another year!

Anyway. That's my story. Now you can see why I am SO scared of not being eligible for the DLA anymore. It is quite literally all I have. We don't have a disposable income. We put all our money into rent, food, bills, Niamh, and things relating to my disability. There is nothing left. Sometimes having enough in the first place is practically impossible!

The sad thing is, I'm not the only one. There are many disabled people out there struggling to live. There are many others who aren't disabled too. SO many people fall through the cracks because they have a disability that varies. They have a partner. They work too many hours for too little pay. They aren't old enough, regardless of their situation (did you know that you are entitled to working families tax credits, even without children, as long as the main wage earner is over 25, NO one could explain to me or Chris why there was this age limit). I haven't even listed a small percentage of problems faced.

I was actually informed (by nodding her head when the question was asked) by someone at the job centre that we (as a couple, even before we had Niamh) would be better off if Chris simply gave up work. This would allow me to claim ESA, Chris to claim careers allowance (instead of my care needs being split between him and my family and therefore no one claiming anything). My ability to claim ESA would result in our full rent and council tax being paid for us. Plus the actual ESA as extra income. Chris could even work up to the standard 24 hours a week, and all this would happen. So... why not? Because we have REALLY strong morals (possibly stupidly at this point). I was brought up, that you work to put bread on the table unless you are physically incapable of doing so, and Chris can. Then if you can't you use your savings, and only then do you ask for help, and when you ask for that help your family should help you too. I have worked myself into a wheelchair, I have used my savings and I have finally asked for help, and my family have offered this financial support as well as physical support in caring for me. All these things stop us making that hard decision for Chris to leave work, or reduce his hours. A decision that is looking more and more likely to occur, despite our best and ongoing efforts!

I am completely in support of welfare reform that streamlines the system, and makes everything less confusing and more accessible for those in NEED of it. This may stop people like me from falling through the cracks. It just needs to be well thought out, and in my opinion this has occurred too fast to be thought out to the extent it needs to be. Just saying!

Anyway enough is enough. It has taken me all day to write this as it has not been a good health day, but was hoping in writing it it might get some of it out of my head and enable me to sleep better tonight.

Here are mine and Niamh's 366 pictures from today:

And Niamh, having snuggles with auntie in her PJ's (PJ day and lots of family support today)

Night all.