No one likes to be betrayed. Thus, David Cameron stands accused by families with disabled children of failing them, not because he is a Conservative, not because he is a rich boy, but because he is one of them, and they believed that he would not let them down.
Even the burd was fooled (though I wasn’t the only one). I remember reading his personal commitments on supporting disabled children in the run up to the election and persuading myself – and many sceptical others – that he got this, that he knew what was needed and he could be trusted. If, for no other reason, than because he could feel their pain.
What a difference a few months makes.
Disabled people have been targeted as public enemy number one in terms of welfare reform. These families will be hit by those changes, and hit hard. Admittedly, the ConDem government has pledged to keep housing and other benefits, as well as tax credits, intact for households where someone receives disability living allowance but this ignores the reality that many of these households receive other, income-related benefits that will draw them into the reach of the sweeping changes.
In any event, freezing their income when living costs are rocketing won’t protect them from financial hardship. And unlike pensioners, they don’t get free TV licences, more generous personal tax allowances or winter fuel allowance to help offset big bills.
To protect their current paltry entitlement is not enough, for it was never enough in terms of giving them the support they need and frankly, deserve. Alarm clock heroes? Parents caring for a child with complex disabilities don’t get the luxury of a full night’s sleep. Their alarm clocks are set to go off on the hour, every hour in order to turn, change and medicate their child. None of us can begin to understand the extent of their caring responsibilities unless we have experienced them ourselves.
Which is why they trusted Cameron and now feel so utterly betrayed. Riven Vincent isn’t the first parent to think the unthinkable of putting their child into care. Having worked with families like hers, it comes up again and again. What makes them most angry is knowing that they might think it but will probably never do it, and that the state knows this too. That’s why it can persist with a system of rationing support according to those most in need. It’s why everything is a battle, even to obtain a regular supply of the right kind of nappies. And it’s why when it comes to making cuts, services and support for families with disabled children are always first in the firing line.
Because normally they are too exhausted and isolated to fight the bigger battles.
The internet, however, has changed all that. There are huge communities of parents of disabled children out there, venting to each other, night after night, seeking support from those who have been or are going through the same travails. They now have an efficient and effective way of providing each other with vital moral support and most important of all, of mobilising themselves.
These families have had at least a hint of better (in England, Scotland is a story for another day). Ed Balls when Children’s Minister (no doubt with the hidden influence of the hand of Gordon Brown, who too has his own personal experience in this area to call on) developed a national strategy for disabled children and backed it up with shedloads of money. It wasn’t enough, and some of the money and recommendations got lost in translation, but families were beginning to see and feel a difference. As part of the dawn of a new government, Aiming High for Disabled Children has largely been torn up, its focus narrowed and crucially, the funding bias shifted from local authorities to health boards. The promise of an £800m investment in respite care largely replaces the £600m or so that was already in services and support.
Making the resource transfer will involve a hiatus when many families will fall through the net or be frustrated by empty promises of a better tomorrow. In years gone by, they would have disappeared from view, reserving their energy for the coping and getting by that was required. Not now. Not when you can post a comment borne of frustration and exhaustion, and become a front page cause celebre the next day.
There will be more Riven Vincents, for there are thousands more like Riven Vincent out there.
David Cameron’s problem is twofold. These most vulnerable families will be amongst the hardest hit by the cuts to public services, the welfare reform proposals and the gathering inflationary storm. But worst of all, his betrayal of them is a personal affront that transcends the political. Unfortunately, for Mr Cameron, the Riven Vincent story is only the start of it. These families will haunt him all the way to the next UK election and it is hard to see how he can emerge unscathed.
A Burdz Eye View 
I never doubted David Cameron’s empathy for his “ain folk” – it’s no surprise that they’re his former school chums and their daddies, not families whose lives are consumed by the randomness of disability.
His shiny-faced Cabinet contains more millionaires than women and Eton has produced more Prime Ministers than the entire Labour Party. Don’t give me empathy.
I would suggest that the respite across all families in the UK should be increased by 650 days a week with each MP doing the day before PM’s Questions each week. It’d be a laugh watching them forgetting their questions half way through and at least stop them shouting a bit. They can stop when every family has had one night respite each.
Oh, forgot to mention – no summer recess (in fact the opposite), no trips abroad on fact finding missions, no reclaiming anything except VAT on specialist equipment, second homes? (we wish), second jobs? (aye, right)… you’ll get the picture after a few years.
That’d generate a bit of empathy, even on my part. I’d still dislike George Osborne though.
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I heard the argument that Cameron’s personal experience with severe disability will make it easier for him to understand what carers go through before the election, and I thought it was bunk even back then. David and Samantha Cameron are millionaires who can pay private nurses to get up on the hour every hour inthe night. they never needed to choose between a specialist wheelchair and the heating bill. They were never subject to the endless grind of unremitting responsibility, because respite for them was a phonecall to a professional away.
This is not to say “I told you so”, or o accuse families with disabled members of naivete. It is to point out that shaming David Cameron is a pointless business, because he will never understand where youa re coming from, while crucially, he genuinely and deludedly believes that he already does.
It’s the Daily Mail, the Sun, Sky News and Mumsnet that you need to convince, them you need to lobby, to them you need to keep sending your stories. Only the threat of public opprobium will make this government move away from its sadistic strategy of robbing the weak in order to avoid the bleatings of the strong.
Another aspect of the government’s betrayal is its proposal to abolish legal aid for education cases. Parents of disabled children are already very vulnerable, and if they have an income that is low enough to qualify for legal aid, that’s a doubly whammy. And of course it’s highly likely that they will, as it’s rather hard to go out to work if you have to look after a disabled child all day. Yet if they need to go the Special Educational Needs Tribunal to get the help their child needs, they won’t be able to get any help through legal aid. That’s despite the fact that looking after a disabled child is a full time job leaving little time to prepare what can be a complicated case, and despite the fact that you get nowhere at a tribunal unless you bring expert evidence – which you can currently get on legal aid, but won’t be able to under the government’s proposals. If this goes through, the government might as well just admit outright that it actually doesn’t give a damn about the disabled.
A family like Caron’s above will get winter fuel allowance and a disabled household won’t because hers have the energy and the ability to muster protest while disabled household’s don’t. Politics in a nutshell.
BB
Betrayal is the correct phrase but dont betray those relied upon to care for your family when needed. NHS staff deserve their increments in the absence of a pay rise. Nurses did not cause the crisis, bankers did yet they get their bonuses. Please dont vent your anger on those that work in tough conditions day in day out. I know of one nurse who over three nights was verbally abused, nearly sexually assaulted and physically abused. By blanket banning increments you harm those who help you.
Great summary.
Have tweeted and shared, if we keep this up, we will shame them into noticing.
Thanks very much Sue. Appreciate it. And hopefully yes we will shame them into noticing and preferably, doing thingd differently.
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I wouldn’t use the language of betrayal quite as strongly as you, but I agree that there are issues. I really don’t get why a family such as us will get Winter Fuel Allowance come June when my husband turns 60 when a family with a disabled child won’t. I find it incomprehensible.
In an article where you’ve outlined that funding is going up by a third, from £600m to £800 m and that families where DLA is being received will not be penalised with the Housing Benefit cuts (which I think are wrong for everyone else), you still use some very condemnatory language.
We both know that more needs to be done. I’m also pretty clear that a deficit of 155 thousand million quid has to be dealt with. I might think it could be a bit slower than the Coalition’s plans, but it’s an elephant in the room that we can’t afford to ignore or we’ll end up like Ireland, Portugal and Greece. The challenge is to re-align resources to make sure that we get as much help to parents of disabled kids as possible, so we have to work out what we’d cut to make that happen. What would you cut?
I deliberately use condemnatory language because Cameron has betrayed these families. He made some very personal commitments to them in the run up to the election, based on his own personal experience, and that is now not being reflected in the approach that is being taken. Money is being taken out of the intiatives that went before to make up the package for respite care. The package amounted to at least £600 million over a shorter timescale. There is very little new money being added in here.
Cuts are only one half of the equation, though I would stop NHS consultants’ bonuses, and I would freeze not just pay but increments – worth so much more to people at the top end of public sector scales than at the bottom – but I’d also raise more income through a more progressive tax regime that doesn’t provide succour to non-doms, and I’d also start recouping our investment in the bailed out banks. I don’t want to wait for bigger profits on our “investment”. I’d just like the money back we put in, before it disappears in another crash. The ones that are making profit – again, allegedly – can start paying back.