Life and Limb!

Next week sees the start of autism awareness month. I hope to be upbeat and positive about raising awareness by then! For now I could do with getting one or two things out there for consideration……
I was chatting to someone this week about the availability of support services for children with disabilities and their families when they said, “yes but you have services, right?” My reply was that we do but it is very much life and limb support. It is the absolute minimum support we could get by on. Yes we have some respite. Yes we have a small direct payments package. Yes Jen gets carers allowance.Yes we get some DLA. Yes we are lucky that we had the strength and know how to tackle a very difficult system and yes we are eternally grateful for it all.
Now let me qualify these and I’m sorry if I offend. Folk love to assure themselves that the proper support is there. It lets them off the hook somewhat.
Well let me suggest that supporting people with disabilities and vulnerabilities is actually everyone’s duty. (again sorry if that doesn’t sit too easy with some.) The responsibility for vulnerable and disadvantaged groups is one for everyone in our society for if it is not what have we got? Surely our very humanity has to be based on helping our fellow people. If that means some need more than others then that is what society is surely for. The alternatives are too disturbing to think about. The inequalities supported in Westminster by the current “elite”and privileged perhaps provide a glimpse of a society that is losing its humanity?
Like countless others we are going through a very testing time right now. We carry on for the love of our son, his rights as a person and as a contribution to our society.
For the record our respite package does not equate to even one night off a week to catch up on precious sleep. Our small D.P. package provides some developmental and therapeutic input to Andy for a few hours 3days per week, while we continue with all the extra domestic duties his support requires. There is no suitable local school for him. Jen’s carers allowance is taxable and works out at a little less than £1 an hour if you assume she has evenings and nights off. (which she doesn’t.) DLA is approximately £100 per week. It has to compensate for my part time working status and Jen’s loss of career. It is to cover all the additional costs of disability and provide some compensation to the rest of our family. One example is our astronomical fuel bills due to Andy’s sensory difficulties that mean he does not wear clothes in the house, requires to be in the bath 3 or 4 times a day and can often be up half the night. Our washing machine and tumble drier is on 3 or 4 times a day. We throw away uneaten food as Andy’s narrow diet changes. We drive him round and round the town to calm him. We try to compensate our other kids with after school activities. We are constantly replacing broken household goods and repairing our home. Full time care for our son would be over £100k per annum.image
I heard recently about an assessment of services by a social care manager ( who makes a handsome wage from disability) suggesting that a car on a mobility scheme ( which we don’t have!) should exempt the authority from paying for any transport costs for a person attending day services. This convenient if erroneous position fails to recognise the costs incurred by the entire family in this situation. The sacrifices of siblings and hard pressed parents are often completely overlooked although they too have a statutory right to support.
So there are some of the less interesting and perhaps challenging facts about autism and life for families affected. I am glad to clarify them. Next week will be more upbeat!

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