• • Jane Renton
  • guardian.co.uk,

Lady Pitkeathley once voiced the carers’ paradox – that they feel obliged to care but not to be cared for. Everyone needs a break, don’t they: but who takes over care for the carer when the carer’s not there?

As a parent of three disabled children variously registered blind, autistic and blind, and with Asperger’s syndrome, it is a tongue twister that resonates deeply. They say it takes a village to raise a child. To raise a disabled child it takes the disabled children’s team, a family support worker, a multiplicity of NHS clinics, local authority outreach workers, the charitable sector – and a village. But mostly, it takes the parents, because a child is always a child, no matter how disabled they are.

As vital as we are, there is an increased incidence of family breakdown in these households. We have been directly affected, with the children’s father suffering mental health difficulties resulting in two weeks away from home. No surprise when you consider that it can cost up to three times as much to raise a disabled child, and that only 16% of mothers with disabled children work, compared with 61% of other mothers. Around 52% will experience poverty, and it doesn’t take much imagination to realise how much more compounded the stress will be.

Take an example of a good friend of mine. She is a single parent – natch – and has four children, aged from six to 17. Her 14-year-old has autism and often refuses to leave the house. When they do leave the house, swearing, they all travel together in a large car – bigger, more expensive to run – which often devolves into a full-scale meltdown. Once, her 14-year-old put her 17-year-old in hospital with concussion. Just for her nine-year-old to go to Brownies, she has to book a taxi.

Sound familiar? No, and it shouldn’t. This is a family that succeeds against the odds to be active, creative and caring. Disability is not the issue here, it is the support they and other families like them receive – or don’t receive.

If you want anything doing, it seems you have to do it yourself. This is the route taken by some of our families here in Nottingham. The Rainbow Parent Carers Forum is a voluntary community group, securing independent funding and launching officially on 26 January. The group runs support sessions and empowerment training to encourage parents to demand rights for their children.

Unemployment, fatigue and low self-esteem are rampant in people who care 24/7 for demanding children. “Ignorance is no excuse,” said one local authority official to a carer who didn’t know her rights. It really does send shivers up your spine.

The Every Disabled Child Matters campaign aims to get “rights and justice for every disabled child [and] to ensure disabled children and their families have the services and support they need to lead ordinary lives”. There is the phrase, right there – “ordinary lives”. As a carer of a disabled child, people queue up to say how extraordinary you are, how they just “couldn’t do it”, and how “amazing” your achievements are. Say you just want an ordinary life with the right to work and access to the kind of childcare that any other parent might expect, and the halo slips.

Just 56% of parents who try to go back to work find sufficient childcare in their area, and the Disabled Children’s Access to Childcare initiative has by no means fully addressed the issue. Just last week, an analysis by the Institute for Fiscal Studies, commissioned by the Family and Parenting Institute, found carers will be disproportionately hit again.

Tax and benefit changes from 2010 to 2015 will result in a real-term drop of 6% in net income for households where someone claims carer’s allowance, compared with a 4% fall for other households. With eligibility to employment support allowance also being redrawn – largely to exclude mental health conditions – our family and many others with disabled children will be disproportionately affected.

It is difficult to imagine that going to work would be classed as a “short break”, but for some it is. Benefits are costly to the system and to the individual who needs to feel individually valued. Carers need a break, and for some people that is working. For some, it is a night out. These are ordinary, not great expectations.

http://www.guardian.co.uk/commentisfree