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Who will look after my brother?

My brother is ten years younger than me. He can not walk and he is autistic. His autism is very bad. He is violent, he self harms, he can't talk. He will always need 24/7 care.
There has something that has been bothering me for years. I know it's a long time away but who will look after him when my mum can't? Mum is a single parent and it's just me and her looking after my brother. But when she gets too old to be able to look after him, I have always wondered where he will go. I said I'd look after him, but mum said I need to live my own life and that looking after him will mean giving up whatever job I might have and giving up time with the family I will have.
But even if I do look after him when mum is too old too, I am ten years older than him. I will die before him and he will be alone for ten years. Who will look after him? I don't trust sending him to a care home or anywhere like that because of the horrible things you see in the news about autistic adults being abused by the care workers. I don't know what to do. I know I've got quite a while before I really need to think about this, but I would like to be prepared for if anything happened. I just need a plan. Do you have any ideas?
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Sam

Hi there,

Thank you for your letter. It sounds like you’re very worried for your brother’s future. I can hear that you love him very much. You sound like a very thoughtful person and your brother and your mum are lucky to have you around.

I realise that the recent news about adults being abused by care staff would have been really scary for you to see. It’s important, however, to remember that these sorts of incidents are very rare. There are a lot of care homes and services that are run by very professional people who care deeply for the people that they support.

It sounds like having more of a plan for your brother’s care would help you feel less worried about what the future might bring. It’s really good that you want to have a plan for the future, but it’s also important to be flexible. Life can be funny in that it can change very suddenly. It’s important to have an open mind about what would right for your brother, and to balance that with what would be right for you and your mum. Your mum is right, you have the right to live your life too. Your brother is a really important part of your life, but it’s OK to need support with making sure that you all get enough of the things you need.

Perhaps you could also talk to your mum about having a plan for the next 3 years or so, and then once you get to three years see where you want to go next. Taking things in smaller steps can give you the flexibility to look at where you are as a family and what needs you have at the time - as these can change.

There are some great support services for people with autism and for their families. Do you have any outside help at the moment? If so, do you feel you can talk to them about your concerns?

You might want to check out the messageboards and maybe post a message of your own, to ask for advice from other young people in similar situations. There is currently a very busy board called “living with deafness and disability” that has several posts from worried siblings. You could also visit the National Autistic Society  or Sibs (an organisation for the brother and sisters of people with a disability) for some more information.

If you want to talk about this a bit more, please feel free to speak to a counsellor about by logging in for a 1-2-1 chat or by calling 0800 1111.

Take care,

Sam

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