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Hi, a new member here - Carers UK Forum

Hi, a new member here

Tell us a bit about yourself here.
Hi My name is Marie, I am the main carer for my daughter Kate who is 24 and has a diagnosis of autism with moderate learning difficulties. We have coped with Kate and met all her needs with no input from social services until this last 6 months. Kate's behaviour has deteriorated due to the lack of structure in her life, a structure previously provided by school and college. After leaving college Kate volunteered at a local charity shop for 2 mornings a week, she is very chatty but this can be to her detriment. Kate may be 24 chronologically but developmentally is about 8 to 10. Kate got very bored with the charity shop as some mornings there were more staff than customers. After nearly a year at home with nothing to occupy her she became very challenging. I contacted the National autistic society and to cut a long story short was put in touch with someone who offered help and advice. Kate now attends a local authority day centre and works in the kitchen, where she helps prepare food and does cleaning etc. I was made aware that there may be a financial contribution on our part but to be honest I was so grateful for any help and relieved that Kate was now occupied that I did not give it much thought. I have been told that there is to be a charging assessment carried out next week and they want to see evidence of all Kate's income and will determine how much she is able to pay towards the 3 days at the resource centre. I do not fully understand how much she may possibly be asked to pay, she gets middle rate DLA and Employment Support Allowance. The latter is entirely for Kate as she is obsessed with DVDs and CDs, shoes, pyjamas, slippers clothes to name but a few. Her DLA goes towards her upkeep including, broadband, sky package entertainment. I have heard that there is an amount called protected income but can not find out how much this is. I can't believe that in order for Kate to be kept occupied and for her to work in the kitchen she will be financially penalised and will have less money to spend on the many things she is obsessed with. I am beginning to think I should have just muddled on and topped up my anti depressants in order to cope.
Hi Marie, welcome to the forum. Don't worry too much about the financial assessment, it's standard procedure. Can I ask if you are her DWP "appointee"? I have a son with severe learning difficulties, aged 36, brain damaged at birth, but very fit, very sociable, but poor concentration and inability to read and write and most of all handle his money, causes many problems. He has had a mental capacity assessment which concluded that he could say what he liked or didn't like, but had no idea of the implications for his budget. As a result, he has access to some of his money in one bank account, but I control the rest (he lives alone with support). It's really important that you have some time to yourself, and that your daughter learns to manage without you. When did she last have a Needs Assessment, and you, a Carers Assessment?
Hmm, seems odd to me that she has to PAY to help in the kitchens, cooking and cleaning! Is that because she has to be heavily supervised, and therefore it isn't really considered 'work' but simply 'occupational therapy' of whatever.

It does seem a shame that she cannot actually use the skills she has to 'earn a living' or at least, earn a bit of a living. And even if her skills are not 'sellable' skills in the marketplace, that her abilities are not devoted to doing 'something' with them!

How did she do at college? Could she continue with it in some way?

Sorry if I'm being extremely niaive and ignorant about the situation.