Valentine’s Day- My DLA Story #ombh

People may have read my blog before and may therefore, be familiar with how I became disabled last March/April. So excuse me if this is an old story. To make a long story short, for the benefit of other readers, I developed a problem with the joints in my pelvis which caused excruciating pain. This led to a loss of mobility. I was advised to take weight off my pelvis and side lie as much as possible from the fourth month of pregnancy. Because walking even with crutches became impossible. I was issued with a wheelchair, which I have used since last Spring.

I couldn’t stand up for long enough to make myself food, I couldn’t bend to load or unload the washing machine. I couldn’t tolerate car travel, because going over road bumps jiggled my joints causing agony for days afterwards. I was put on painkillers, which didn’t quite stop me being in lots of pain. But did increase my fatigue, and cause a certain fogginess of cognition. Both work and most of the tasks associated with my parenting role became impossible.

Becoming disabled is a curious process. For me, it was mixed with denial, fear, self-stigma and shame. I hid myself away, in pain, like a wounded animal. I turned on my partner, who had been the person helping me turn over in bed, who had helped me get my pants on each day, who had got me every painkiller and glass of water. I didn’t want to be a burden; I didn’t want our relationship dynamic to change to carer and caree. I was snappy with my child, who was being kind and as understanding as a three year old can be to her pregnant and pained Mum. I didn’t bother phoning friends. If people came to see me, it was great, but it tired me out for so long after each visit that I didn’t seek it out.

I understood that I needed help. I didn’t feel guilty- I work in healthcare– I often help others and consider it evidence of civilization that, in turn, I will be looked after when I need it. A few attempts to get the Social Care I thought I was entitled to didn’t quite work out (I was incorrectly assessed by an unqualified member of staff) but I did get some bits of adaptive OT equipment which helped me enormously. Several of the professionals I worked with advised me that I should think about benefits. Proudly, I resisted this- after all, I didn’t need benefits- I was able to earn my own living.

But the day came when I realized that in order to get a blue badge so that I could park near enough to shops to be able to make it in there, I needed a gateway benefit to confirm my disabled status. I realized that the accessible transport I needed to go anywhere cost money that I didn’t have. My wheelchair (on loan only) needed a cushion, and there were little bits of equipment that were important but that weren’t issued by Social Care. I needed a pedicure every six weeks because I could no longer reach my feet and I was getting in-growing toenails. I couldn’t get many of my clothes on, so had to buy a load of new maternity clothes that would go over my head. I couldn’t bear the cold on my back, so I had the house at a constant balmy 21 degrees. I couldn’t stand to make food, so I had to buy ready meals rather than cook everything from scratch like I always used to. I then had to buy ready meals to feed my daughter, for the same reason. I started to notice what a lot of extra expenses my disability was costing.

So I was brave, I made the decision to apply for DLA. DLA is variously described in the media as an out-of-work benefit, or as a target for scroungers. Actually, fraud rates for this benefit run at 0.5%, and given the complexity and length and humiliating detail of the form it is no great surprise. It is available to disabled people to cover the additional costs involved directly due to disability- such as the ones I detailed above. The benefit is awarded whether or not a person is in work, and in fact many disabled people are only able to work because of the benefit which can help with accessible transport costs, extra equipment, or help in the home so that their energy is reserved for paid work. In order to qualify, you must be disabled for three months before filling out the form, and be predicted to be disabled for six months after the form is filled out.

When I went into the appointment to apply for the benefit, I wasn’t expecting it to be quite as humiliating in the detail I was required to give. Modesty prevents me from sharing with you here, but toileting detail and all the small humiliations that had been kept within my family were aired with a stranger. At this point, I was unable to sit in my wheelchair for more than an hour or so. During the appointment, the pain increased and I became visibly sweaty and uncomfortable. She recognized the extreme pain I was in, and wholeheartedly assured me that we would get this done as quickly as possible. She did help to get to the end of the form, although I was in a lot of pain and didn’t give as full answers to the questions as I could have done were I not suffering so much.

Form completed, it was sent off at the beginning of July. I have to admit, I felt confident- after all, I was genuinely in need. However, the next I heard was three months later (September), when I got the news that my application had been refused on the basis that the assessor thought I would probably not be disabled after six months from submission of the form (i.e. January 2011). I had assessments from my G.P., my Social Worker, the reports from my Home Care team members, all of which supported the assertion that I was likely to remain disabled for some time. But, I accepted the process sometimes produces unexpected decisions, and asked them to look again at the decision. A month after this (October), and they got back in touch to say they had looked at the decision and had decided that I did not meet the criteria because I would not be disabled six months after filling in the form. At this stage, four months after filling in the form, I requested to know what information might be helpful in order to ensure the correct decision was taken when I appealed against the decision they had made. They assured me the reason for the decision was that I would not be disabled on 1st January 2011. I gently disagreed with their analysis of the content of the supporting documentation, which I had copies of on file. I asked what my next step was.

Once the initial decision has been communicated, and the decision has been looked at, the next step is to take the decision to a tribunal. So, I filled in the tribunal request and submitted it, and settled back to find out when the decision would be made. They got in touch with a date for my tribunal hearing. The date was MAY 2011. I made several telephone calls and got the members of my treatment team to do the same, to find out if there was no way to get re-assessed sooner. No, a full 10 months after the original application was the very earliest they could expedite my Tribunal. Let me make this clear; the Tribunal are charged with assessing if my disability was likely to remain in place post January 2011. I had numerous professionals who can attest that this is, indeed, the case. They still will not even consider my decision for a further 5 months. During this time, I am expected to continue to fund my entire range of disability related expenses.

So despite the fact that I have extensive letters on file from all the professionals involved in my care, detailing the effects of my disability on my life, I have no DLA. I cannot walk unaided for more than a couple of steps, I use a wheelchair for every journey outdoors, I have a car (taxed, insured) but I am only able to go out in taxis; despite this, I am still not in receipt of mobility component of DLA. I am in constant pain and unable to dress myself; it’s unsafe for me to shower in the house alone in case of falls; my partner has to get out of bed and get my wheat bag when the pain is too much for me to sleep with; I have to have painkillers brought to me when I wake in screaming agony; I cannot make my children meals, I cannot bathe my baby. Despite all this, I still do not receive Care component DLA. Without DLA as a “gateway” benefit, the services that I require, the re-housing that I need, the help with parking, childcare, taxis etc. are all out of reach. the benefit exists to help plug this gap- the financial cost of disability that is hidden from the able-bodied world. And it is so, so hard to claim.

Which does explain why the level of fraud for this benefit is so extraordinarily low. Why efforts to reduce the number of people in receipt of this benefit are disingenuous at best, discriminatory and damaging at worst. Why all right-minded people should, and will, resist this Government’s attempt to further restrict the life chances of people, like you or me, who happen to be disabled.

Today is Valentine’s Day. Have a heart- listen to the voices of the Broken of Britain campaign, sign this petition, and write to your MP. Explain that any of us can become disabled, that DLA is a disability benefit unrelated to work, and that it is desperately needed by those who are in receipt of it. We’re all in this together, after all.