Celyn Vincent is a six year old girl with quadriplegic cerebral palsy and epilepsy. She requires round the clock care from her mother, Riven. Six hours of respite care is provided per week by social services. Yesterday, Riven Vincent asked for Celyn to be taken into care as her request for additional respite had been declined and she felt unable to cope. As yet, Celyn has not been taken into care, discussions are still on going as to the best way forward.
Riven Vincent is a user of Mumsnet and had David Cameron to tea pre election. During this visit he assured her that more would be done to support families with disabled children. A promise he is now being accused of breaking.
The statement released by Ms Vincent can be viewed here.
Carers are estimated to save the government in the region of £80 Billion every single year. Riven Vincent has estimated that the cost of caring for Celyn in residential care would be between £2000 and £3000 a week. The cost of a respite carer for Celyn is approximately £15 per hour according to Ms Vincent. It is likely that Ms Vincent is in receipt of Carers Allowance at a rate of £53 a week. Financially the provision of additional respite is obviously more cost effective. It will also have many other benefits for Celyn and her family which can't be measured. Time as a family, the ability to make memories. For Celyn's brothers and sisters to spend time with their mum. And for Ms Vincent to have time to rest and recover.
The fact that there is now a lot of attention on the issue of support for carers and the valuable work they do is great. However this isn't a one time only thing. Nor is it new. For many years now families have been expected to care for their disabled children (even when they become disabled adults) with little or no support for years. The planned cuts to disability benefits and services are likely to make this much worse meaning even more carers find themselves in this situation.
Personally I was refused all support when I left university as I was living with my parents (in a property they had moved to whilst I was at uni and which wasn't adapted) and we "could cope". The fact my Mum was working full time and also caring for my elderly Nanny (and my Dad had just had spinal surgery) and saying she couldn't cope was irrelevant. We were told we simply needed to "pull together as a family." This situation was only resolved because my parents refused to have me in the house and I was made homeless. That's a very distressing and painful procedure.
I know of other disabled people who have had to go down that route. Of a 40 year old who was given a suitable flat to live in but couldn't move from his parents house as no care was available. And of parents of now adult disabled children who have had to accept there child is never going to leave home and they'll have to keep trying to cope as best they can. Twitter is full of similar stories today.
The focus on care provision needs to move from the cost of it financially. It needs to look at the bigger picture. The question shouldn't be "can we afford to provide X service" but "can we afford not to?"
The fact that Celyn Vincent's family have found themselves in this situation has been described as "shameful". The fact that hundreds and thousands of carers and disabled people are in the same situation is even more shocking. I hope that Riven Vincent's brave decision to go public gets results for her and she can keep Celyn at home. But mostly that this brings the issue into the public eye more and that reforms are made to provide much needed support and independence for all disabled people and their carers.