My mother's GP tells her she must fight. Problem is, caring for someone 24/7 generally takes the fight out of you

As depressing stories go, few beat that of Alison Davies, a single mother, and her 12-year-old autistic son, Ryan. Both of them are thought to have jumped from the Humber Bridge on the weekend of 14 April. Davies, who suffered from chronic depression, left a note saying she felt "a failure as a mother".

It's a story that all relatives of an autistic child can relate to. I say "child": my brother Frazer turns 26 this year, but with his love of cartoons, pets and really bad Carry On-style puns ("oooh, what a lovely pair!" as you eat - obviously - a pear), he will always seem young.

Like Davies, my mother is a lone parent, my father having died while she was pregnant with Frazer. Like Davies, too, there is no end in sight for her. Other parents plan their future, what they'll do when the kids grow up, but for those with a disabled child, there's no need. They know exactly what they'll be doing.

I'm sure most people would agree that parents in these circumstances deserve well-organised and well-resourced state help, especially given that many carers find their career disrupted or finished. With all the unpaid work they put in, after all, carers apparently save the UK approximately £57bn a year. Yet you realise, as soon as you start looking into the system, that the provision is inadequate and the bureaucracy frustrating. My mother often screams that, if it were possible, she would happily forget about state help altogether. Sadly, it is not.

The frustrations take many forms. One arose back in 2001 when the benefits system changed and incapacity benefit replaced Frazer's severe disablement allowance, placing him in the same category as sufferers of recurrent back pain, for instance. Since then, it has been necessary for my mother and Frazer to prove, every five years, that yes - no miracle cure here! - he remains autistic. Last time, this involved them travelling from Essex to Tottenham, my mother handing over a clinical psychologist's report, and the comment being made: "I'm so sorry. I can't understand why you've had to come here." Naturally they're looking forward to the next trip.

Like many other disabled people, Frazer falls into what might be called a "moderate" category: on the one hand, he needs help with most simple daily tasks (shaving himself, handling money, boiling a kettle); on the other hand, he has no severe behavioural difficulties. The problem is that, with state provision always stretched, social services understandably cater to those most disabled.

So, for instance, there was no appropriate school for Frazer: all the resources available were for children with extreme disablement. My mother visited two "special" schools, one for autistic children with behavioural problems such that they had to be locked in at all times. At the other school, she was asked if Frazer could read (he can) and told: "Oh well, he definitely doesn't want to come here, then." Frazer ended up coping admirably with the comprehensive system, surviving one of the biggest schools in the country and gaining three Gs at GCSE.

My mother is eligible for four weeks' respite each year. She started using this tentatively a few years ago: the other residents of the respite home were much more severely disabled than Frazer - mostly unable to walk or talk. She stopped using the service, however, when one of the residents with severe behavioural difficulties found a fire extinguisher while Frazer was staying

there, and began terrorising the other residents by smashing every window in sight. When my mother looked into the chances for him to stay somewhere with people who have a level of disability similar to his, she was told there was nowhere appropriate anywhere in Essex.

Even the paltry financial help of a carer's allowance is off-limits: a charity worker encouraged my mother to apply for it recently, only for her to be told that, as she was already on benefits (an old-age pension, which I didn't realise was a "benefit"), she couldn't claim the £46.95 a week. Think about that: £46.95 a week. You are eligible for this only if you claim no other benefits (or if the benefits that you do claim amount to less, in which case you get granted the difference) and if you look after someone for a minimum of 35 hours a week. It works out at £1.34 per hour at most (forget that many carers work around the clock). It is the lowest earnings-replacement benefit available, and this for a job that often involves more work in a year than many of us see in a lifetime. It is, quite frankly, a fucking disgrace.

But what can you do? My mother's GP has told her repeatedly that unless she makes a nuisance of herself to the social services, calling them every day, being increasingly unpleasant, she will stay at the bottom of the pile for ever. They're fire-fighting the extreme cases, so that's how it works. The problem is that caring for someone 24/7 generally takes the fight out of you.

This is exactly how the "moderate" cases of living with a child's disability (households in which parents can just about cope) turn into "extreme" cases (households in which parents become utterly desperate). It's a situation that seems likely to breed many more Alison Davieses.

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