Monday, 6 February 2012

Let Them Eat Cake: #5633 in a Regular Series.

Here we go again.....

Maria Miller, the Under-Secretary of State for Not Having a Clue says there is "no shortage of jobs"

Let's leave for the moment that fact that there IS a shortage of jobs (400,000 jobs for 2.96m unemployed is "a shortage" - you'd think, having studied Economics at the LSE, she'd have grasped this). Her assertion that it is down to people's lack of "appetite for the jobs on offer" is insulting to all jobseekers, but especially so for the disabled (or those who care for them) who want to work, but can't.

Many disabled people do work and most want to, if they are able. It is not that their 'skills' do not match; it is the access to and flexibility of these jobs which determine whether disabled people can take them, and too often there is still a mis-match here. Every time you've whinged about the attention a colleague is getting as he's measured for a specialised office chair due to a severe back problem, consider how much more you'd resent him if he gave up work and relied on disability benefits? It's simply not true that disabled people don't want to work. And have you noticed how 'flexible' working almost always means flexibility for the employer rather than the employee?  "Can you fit with these odd work patterns? Then welcome!" 

She's right on one thing - it's not just about the jobseeker, but also their family, and this is particularly important for disabled people, whose families are already disproportionately affected, and where family cohesion is tricky even without the demands of a low-paid, long-hours job.

Regular readers of this blog (and my Twitter followers) will already know how challenging caring for a teenager with Autistic Spectrum Disorder can be. This didn't evolved in a vacuum, though. When she was born, we were much more preoccupied with the diagnosis of Sturge Weber Syndrome, the prognosis for which was very variable and generally not good. Despite this we tried to lead as normal life as possible; I returned to full time work when she was six months old, despite her epilepsy, which manifested at the same time. We were advised at the time to apply for DLA for her, but we resisted, as we didn't feel that the demands on us where any greater than any other child of her age. By the age of three, and within days of starting school, it became clear that there were some fairly major behavioural issues to be addressed (not unknown with SWS). We, and school, struggled for several years to deal with this, and despite her statement and 100% (at one point 200%!) 1:1 support, it was touch and go whether we could keep her in school. Multiple exclusions, regular calls at work for one crisis or another, it was exhausting and demoralising. Her additional ASD diagnosis came in Y3, which helped a little, as we at least knew what we were dealing with and could try and devise strategies to help her. Throughout this time, we both continued to work - we were lucky in having understanding employers (we were also both conscientious and good at our jobs, which helped) and good after-school/holiday provision. Even with support, though, it was very difficult, and took its toll on us emotionally. Still we didn't claim DLA, despite advice from doctors that we should.

Oh. And did I mention the glaucoma and detached retina, which claimed the sight in one eye just before her 11th birthday? We carried on working through the operations, radiotherapy, 60-mile rounds trips to hospital, going cap-in-hand for special leave when we had exhausted both annual leave entitlements. 

Just before she was due to transfer to secondary school, I was made voluntarily redundant from my outsourced, former local authority job. We decided that as school transition was likely to be traumatic, it made sense to live off my severance money to allow me to be available to help her. And so it's proved. I stretched the severance as far as I could, and then - finally - persuaded my partner that we really should claim the DLA to which we had probably been entitled for 13 years. As the claim was approved immediately, without recourse to appeals/tribunals,  I assume I was right on this.

Adolescence isn't easy at the best of times and the additional anxiety and confusion it causes for those on the spectrum is unimaginable to the neurotypical. It would be nonsensical to try and return to full-time work for the next couple of years - she is, if anything, coping less well than she did in Y7, and it is vital that we keep her in school and (hopefully) get her some GCSEs (not the full EBacc - sorry Michael!!) if she is to have any chance of meaningful employment. As it is, her prospects are pretty bleak.

And as for me? Today she said "Why don't you get a job?", seemingly oblivious of the amount of time I expend simply trying to get her to comply with everyday tasks. A lack of empathy, sure, but then, she is on the spectrum. What's the excuse of the general public or their cheerleader Maria Miller?

It is not the skills I lack, Ms Miller. It is the availability of work which I can mould around the needs of my child. I spent ten years trying to juggle work and caring, and I sometimes wonder if I didn't put work before family too often (after all, my employers were paying me and I had entered into a contract with them). Here's what I need to be able to work and care:

Term-time only - Holiday childcare for secondary-aged children is patchy, expensive and of varying quality. Sports camps are not viable, as they require co-operative working in groups, and are frequently noisy. If she struggles in school, where staff and pupils know her, there is little chance of her coping with strange faces and (possibly) unsympathetic peers. There are some schemes for disabled children, but I'm wary of this compartmentalisation and anyway, funding for these is being squeezed. Apart from any other considerations, she finds school mentally exhausting and she needs (as do most teenagers, actually) to use the holidays to recharge her batteries. 

Truly flexible - and no, I don't mean the night shift in a 24hr supermarket. Something home-based, so I can work through the good days (rare) where I get no interruptions, yet be able to drop everything and deal with a crisis. I'm keen and willing to work, but cannot currently commit to standard hours or travelling. With 20+ years' admin/managerial experience, there should be something I could do from home (which, we're told, is the way of the future), but I've not been able to find anything so far. 

Security - the one thing you really can't do where ASD is concerned is introduce uncertainty. Any job I do will need to be sufficiently ordered that it doesn't present too many fluctuations. For that reason, self-employment isn't really a good option. Trying to build a business simply isn't compatible with caring for someone on the spectrum (especially if, like me, you are profoundly non-entrepreneurial). I know, I had a go at it, with spectacularly little success. Given how many businesses fail anyway, and given the dire economic climate of the next few years, you really need to give it your full attention, something you cannot do if you are a carer.

I may be the primary carer, but it's a family enterprise. My partner, after a full day's work, is there to take some of the strain when he gets home, and my younger child accepts that she will be subject to a level of neglect which other children could not comprehend. Her needs are not even taken into account in the DLA application process, although she is massively affected by her sister's condition. To keep the family together (and therefore avoid additional strains on the welfare budget) I need to ensure that I'm there for all of them and when they need me. After all, we want to discourage family breakdown, don't we?

I don't expect to be able to command anything like the salary I did before (which, I hasten to add, was still only just about the national average after 22 years), but we took a 50% cut to the household income to care for our child, so you can't say we didn't make sacrifices. We saved the country 13 years' worth of DLA payments, by meeting the additional costs of my daughter's disability ourselves, despite modest incomes (and yes, I am looking at you, David Cameron).  At present, I'm doing a full-time job for £55pw - no 20 days' annual leave entitlement, no opportunities for promotion, no trade union (although plenty of moral support from my fellow Twitter ASD friends). It's long-hours, I'm subject to regular verbal (and sometimes physical) abuse, and I have no recourse to any protest. We're working, but there is no money for much beyond mortgage, food and utilities. Our sofa needs replacing (the arm has split and the foam is spilling out), the carpets are nearly 20 years old and are getting dangerously threadbare; the recent wet weather has exposed weaknesses in the pointing on the front wall,which is allowing moisture to seep in. None of these will be addressed any time soon.

Now, I'm sure she will claim that she is talking generally about unemployed people , but she is the Minister for Disabled People, and so most people will assume that she is talking about the disabled seeking work. Yet another neat little smear tactic. Seemingly, Miller doesn't make the connection between getting (and retaining) a job and the impediments to that which the Welfare 'Reform" Bill creates. Almost everything she says could be justified if the WRB wasn't undermining disabled people's ability to retain their jobs.

"Every family should be a working family" says Ms Miller. Well, we are, and I am. I find the sneering assertion that I have "no appetite" to work deeply offensive.

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