you can knock my weeble over but you can’t keep it down…

Maybe it was just bad timing the letter coming at the end of a gruelling seven and a half week summer holiday, talk about being kicked when you are down. I read it once, I read it twice and then I just wanted to cry. I despair. I despair of ever being to escape the hidden slavery that is the lot of the millions of carer’s across the country, I despair of us ever getting anywhere near the rights and entitlements laid out in the Carer’s Act, I despair of us ever having freedom, choice, or looking after our own health. I despair of ever being treated as people with rights, and most of all I despair for my disabled son and daughter’s futures. It’s a disgrace, really, the legal loopholes that allow the agencies to get out of being accountable for their shortcomings.

When my son turned 18 the transition process should have produced a fluid, seamless move from Disabled Children’s Services to adult services, it did not. The family were without overnight short breaks for 13 months… after complaining we were offered a 52 weeks recompense but couldn’t take this as my son was again without services. Having taken the complaint up to the Parlimentary Ombudsman we have been told that the CCG are not at fault. They are still willing to provide the 52 nights… fair enough, but the damage to our family has been done.  What really irks is that no-one is being held to account for the non-availablity of services. Basically they ‘can only work with providers who respond to them’.  So where does that leave us as carer’s? Where does that leave my son a if we are ill or injured? Where does that leave him if we are unable to care for him any more? Up shit creek with no paddle. It’s a simple as that. When the system has no services they don’t have to provide them. Forget the Carer’s Act, forget my son’s rights, my disabled and non disabled daughter’s rights and childhoods. When the system fails we have to pick up the shortfall… it doesn’t matter how many times it’s written down that we can’t cope without respite, let alone have any quality of life. It doesn’t matter that our teenage daughter, who is a recognised young carer, also struggles to cope and we are not able to support her as much as she needs. We as carer’s are locked into an emotionally abusive relationship with the system, our vulnerable relative’s welfare at stake, how can we walk away when, with no local services, they could be sent hundreds of miles away to one of the dreaded Assessment and Treatment Units where abuse of people with learning disabilities is commonplace. How can we walk away when they need us? The system knows we will not. We are the donkeys, the work horses, the system is the whip and we will work until we fall down in our harnesses.

Yes, maybe it was bad timing the letter coming when it did, maybe next week I will pick myself off the floor, write yet another letter of complaint and start the whole process again for the second period of 13 months that we were without overnight Short Breaks for my son. (And while I’m at it there’s one I need to write for my daughter too.) But right now, my inner weeble has been knocked over and is having a bit of a wobble….

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About barbgrant

full-time parent/carer and part-time OU student
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