Blind spot

I was already blind in my right eye. Now, my left has a milky post-anterior cataract that cannot be removed (it’s too dangerous). This leaves me with about 15 per cent vision on a bright sunny day, and about 5 to 10 per cent on a dull cloudy day. I’ve continued my day-to-day life, no longer seeing the edges of stairs, traffic coming towards me, and the numbers on buses. I’ve started mobility lessons with a white cane, and I’m on the waiting list for a guide dog. I’m keen to keep working (I’ve been a journalist for many years), but I’ve had to reduce my hours as I’m often hit by fatigue just from getting around. Eventually, I decided to bite the bullet and apply for disability benefits.

Currently, disabled people or children in Britain can apply for two types of benefits. These are ESA (employment support allowance) to replace wages if you are unable to work, and the DLA (disability living allowance) to help with the extra costs of living. For the ESA, in addition to filling out forms and providing an assessment from your doctor, you need to be approved by a government-appointed agency, ATOS. This involves a face-to-face medical assessment by a trained medical assessor, but one who may not be familiar with, for instance, complicated sight issues. Citizens Advice warns that the reports from these assessments are often inaccurate. If your application is successful, you must attend compulsory “work-focused interviews,” where your prospects for employment are considered, even if you have a degenerative prognosis for sight loss. I was also told by a care worker, in private, that if I apply for ESA, I should describe my life in its worst possible terms, in order to persuade the assessor I have mobility problems.

In the event, I applied for the DLA, but not the ESA because I’m still in part-time work. I now receive the lower rate—around £19 week—which helps with the costs of taxis and canes. I’m lucky enough to know, through journalistic training, how to navigate government bureaucracy. Yet under the current system, many people far worse off than me have been overwhelmed not only by the application system, but also by stressful appeals, because the initial assessment did not understand medical issues that aren’t obvious and can fluctuate daily. Classic examples are the on-off pain and fatigue of multiple sclerosis, cancer or rheumatoid arthritis, or mental health issues which can, at first glance, be invisible. An independent report on the ESA last year concluded the system is “impersonal, mechanistic and lacking in clarity.” Charities have long been calling for reform.

Unfortunately, the government’s new welfare reform bill before parliament threatens to make a convoluted system even worse. Under the proposals, the DLA will be renamed PIP (“personal independence payments”). It will require face-to-face interviews for every individual on the benefit (a costly procedure) despite no evidence that this will lead to a more accurate assessment than the method currently used. From the department of work and pensions’ draft proposals, it is clear that fewer people will get the new PIP benefit, despite there being no evidence that those currently in receipt of DLA do not need it.

Even more worryingly, those who get ESA (which will be contribution-based) and are deemed able to work at some point in the future will only receive it for one year. Then they will have to be assessed again. Citizens Advice estimates that 75 per cent of people on ESA will be judged “fit for work” and will not get as much, or any, of the benefits as they did before. This is not because they are claiming benefits they don’t need, but because the “descriptor” (the definitions of what people can and cannot do on a daily basis) asked by assessors will be simplified to narrow basics.

So, for instance, instead of asking a deaf person, “How much can you hear?” they will be asked: “Can you understand a simple message?” Someone who had emphysema would, under the current system, get some points because they were limited in the distance they could walk, some points for not being able to bend and some points for not being able to stand for long. But under the new plans, the descriptions for bending have gone and the description for standing has been changed, so that someone in this position would only score points for difficulty walking. The severe disability premium, that helps disabled people on a low income and living on their own be more independent, is also set to disappear.

The government argues that its reforms will make the lives of the disabled more independent and focused on work, and guarantees that the most severely disabled will not be affected. But when the target is a 20 per cent cut on forecast disability benefit spending by 2015, one wonders how carefully these changes have been thought through on anything other than a cost-saving basis.

Undoubtedly, the system needs reform—and any room for possible abuse must be removed. But the best way to do this starts with more accurate methods of assessing people’s disabilities. One wonders why, given the need to cuts costs, the government is spending yet more money on independent assessors to judge disability rather than using a patient’s own doctors and specialists. Especially when these healthcare professionals will be more familiar with a patient’s case history, and therefore more likely to produce a more accurate assessment of their patient’s condition—for better or worse—in some cases saving money.

Disability does not fit one neat box. Many diseases fluctuate, improve, degenerate and can sometimes be invisible. For this reason, as the MS Society argues, there should be more empathy, flexibility and clarity in the system. Reform is certainly needed—but it would be depressing to think that, in undertaking it, we are only disabling the disabled still further.