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.