Who cares?

There is currently a big campaign being mounted about the projected future cuts to disability benefits, and rightly so. But until this week less was heard about the stealth cuts being made to other services, such as respite for the carers who save the state a fortune.

Unless you have been a carer, you will have no idea how hard it is to get respite. Not just a respite service which is suited to the child or adult cared for , but any respite at all. At the moment the only respite we receive is a fairly heavily specialist playscheme in school holidays, usually two five hour days a week if we can book a place. We are very lucky to have that.

This week there has been a bit of media interest following a plea for help on Mumsnet by a lady called Riven Vincent, who had reached the point of desperation in caring for her daughter, who has huge physical care needs due to cerebral palsy. Riven is herself disabled and as a fellow MS sufferer I know I couldn't cope in that scenario either. There are families caring for adults who are similarly struggling and it is happening all over the country. Health and social care has become budget rather than needs led.

Most of my experience of caring is for my children. I was lucky to have been given advice early on about Carer's Allowance, for which I was able to apply once son 2's severe needs had been identified about 14 years ago. This little bit of cash has been a lifeline, as due to his needs I was unable to return to anything more than a few hours part time work from home. At the moment I am not even earning from the writing work I now do after losing my job.

So yes, I get Carer's Allowance. That is £53.90 a week and is taxable if you reach the tax paying threshold. On top of that I can earn up to £100 a week (should I be able to find flexible work) but not a penny more, otherwise I lose the Carer's Allowance. To get the benefit the cared for person has to be on the middle or high rate of Disability Allowance for care (i.e. considerably disabled) and the carer has to be caring at least 35 hours a week. I did a quick tot up this morning and worked out that Son 2 needs a minimum of 80 hours a week care in term time and considerably more in school holidays. By care I mean that due to his non-existent sense of danger one of us has to be in the same room as him or within earshot and constantly checking. We live our lives in fight or flight mode and after 16 years it is taking a toll on our health. You'll notice that I haven't included night time hours in my calculation, as these vary, but again he needs supervision if awake. Whilst Hubby has always helped out with care in non-work hours, only one of can claim the benefit. If you care for more than one qualifying person, as I did for a few years, you can only claim the benefit for one of them.

We can cope with Son 2, just, but he is not as challenging as many severely autistic children. We were lucky enough to get specialist educational help early on which has helped his ability to cope a little. Hell no, we got that help because I, as his carer, fought tooth and nail for it. Carers are constantly having to fight bureacracy and advocate for the person they care for. In the next couple of years the process will start again to find adult services for him and I just don't know how I'm going to do it. Like so many carers, the constant battles have taken all the mental and physical energy from me.

Through his late son, David Cameron has personal experience of disability and being a carer. I really hoped that this might just feed through into policy, but instead the government seems intent on dismantling financial and practical support for disabled people and their carers. Please read this blog post by Catherine Hughes for lots more insight and links on disability cuts.

Life sucks.