Waiting for a miracle?

The strange logic of annual benefit assessments for the disabled

The last few days saw the story of a 16-year-old’s brush with the benefits system. Edward Bright, who lost his limbs in early childhood due to meningitis, received a letter insisting he is reassessed regarding his qualification for benefits. Clearly very distressing to him and his family, this has thankfully now been resolved.

It all reminded me of growing up in Yorkshire, our family’s life being shaped by the effects of Jenny’s disability. Today day it’s the Department for Work and Pensions (DWP). Back in the 1980s it was the DHSS (Department of Health and Social Security), and it was the annual DHSS assessment that featured large in this of course.

Jenny in wheelchair, carrying her sticks

Jenny could walk with sticks inside and for short distances out of doors, but mainly had to rely on a wheelchair.

Jenny’s severe cerebral palsy had been caused by the complications of premature birth. For her this involved weakened limbs, spasms, spatial-awareness difficulties among other issues relating to her physical wellbeing. It was mainly her difficulty in being mobile which concerned my parents in the first place, leading to her condition being identified when she was two. And this difficulty in moving both hampered and challenged her throughout her life, from learning to crawl about to eventually being able to live independently.

As she reached adulthood, the annual assessment became much more pressingly important to her as it determined her income and by implication just how much she could do with her life. Yet even in childhood it was a loaded experience – I remember vividly her being instructed to walk a certain distance (by the age of ten she could do this with specially-adapted sticks, but not unaided), and having her balance checked. This was whether she could stand up without holding onto anything – she couldn’t, and always fell over.

She dealt with these assessments stoically, shrugging them off, but I could never see why she was being put through this degrading spectacle repeatedly, especially once she’d reached adulthood.

Were the authorities expecting a miracle cure? As a sizable proportion of disabled people with conditions such as cerebral palsy are, unfortunately never going to ‘get better’, why force them through reassessment when their condition remains stable. Should their condition deteriorate so that they can no longer adjust to their everyday environment, that would be the point at which reassessment would be justified.

Changes to disability benefits in recent years amount to moving the goalposts: suggesting that people whose abilities remain unchanged should suddenly lose their level of benefit. In practical terms, somebody who can walk say 50 metres, and used to qualify for a benefit on this basis would be told that because they can walk further than the new threshold of 20 metres, their benefits would be cut. Many disabled people are resourceful – let’s face it, they have to be – but non-disabled people often don’t realise how a seemingly minor expectation for adjustment can cause severe ripples.

For example, moving house involves – beyond the adjustments anyone would make – considerations such as the ability to remain close to viable taxi services and accessible public transport, the accessibility of local shops, proximity of friends and family as well as the doctors and hospitals they may have relied on for a long time. And feeling safe getting home. Introducing a massive change to their circumstances, completely independent of their physical ability is grossly unfair. Surely no way to treat the people our welfare system was designed to support.

About Ed Green

Writer and editor, Yorkshire bred, now living and working in Central London. This blog charts the writing of my memoir 'Twinned' - life with and without my disabled sister. It features disability issues, cerebral palsy, traumatic death, bereavement, twinless twins, guest posts, and throws in the occasional 'off topic' post.
This entry was posted in cerebral palsy, disability, family, human interest, lifestyle, memoir and tagged , , , , , , . Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s