The Independence Void
I’ve hit a bit of a brick wall in funding Steven’s growing call for independence.
Since he moved, he’s been asking for more time by himself (without me) and we’ve tried really hard to respect that. It feels like a good, positive move.
However, there always needs to be somebody around so I’ve had to ask the support workers to carry out additional shifts. Basically, it works out to an extra 6 hours per week plus 2 additional nightshifts. The workers have been brilliant and offered to do the extra hours at a lower rate because they could also see that this was a good thing for Steven. The Personal Budget is so tightly calculated and controlled that there is no spare money at all to cover these extra hours, so since December I have been paying the additional £100 myself. I’ve nearly exhausted my savings, so it is going to be impossible to maintain this expense. But to not do so will compromise Steven’s autonomy.
In December I claimed Carers Allowance for the first time. I thought this would help towards the extra support money I was having to pay out. Ironically, although I now have extra hours free during the week, my paid work has decreased significantly over the past year. Clients have finished and I don’t have the access to new ones like I used to. For some reason, I got awarded Carers allowance from 3rd October to 15th November (even though I hadn’t asked for it) but have had nothing since. We have fortnightly telephone conversations and they have sent me 9 forms to complete about my income but no more money has been forthcoming. I have no idea whether there will be an ongoing entitlement.
I hadn’t mentioned the extra hours to social services for a simple reason – fear. I know they have banged on about Steven’s independence since 2008 but they don’t really mean it. Not in the true sense anyway. They talk about it as a cover for cutting budgets. I feared that if I asked for any extra hours in the Personal Budget they would decide that it would be cheaper to provide Steven’s care in one of their dreadful supported living flats, or a residential placement. However, when we had the community DoLS assessment back in March, I thought I’d broach the subject with the social worker. She sounded very open and promised to speak to her managers.
Today, I received an email on the subject. Nothing has been agreed. They want more information before making a decision. They’ve asked for records of the money I’ve paid out and the time sheets covering the new shifts. This is awkward. Because the new shifts don’t form part of their normal contract, they haven’t been including them on the timesheet. I can see that there is a problem before we’ve even got out of the starting blocks. I guess I’m asking them to trust and believe me and the system doesn’t work that way. I guess it all boils down to me wanting to live in our home, whilst the State just sees our home as an extension of their office.
I wrote a blog a couple of years ago about how the system attacks families. One of the most common ways is by doing absolutely nothing at all. Putting off making a decision. Keeping the family in limbo for months on end. Asking endless questions to deter the claimant. I’ve come very close on several occasions recently to saying to both the Carers Allowance people and social services – “Don’t bother. It’s not worth the hassle”.
Trouble is, if I don’t pursue this, we’ll have to go back to the old support arrangements and Steven loses that independence, or autonomy, that he’s striven so hard to achieve.
From → Social Care