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Anna Kennedy needs you to complete this very important survey: Who will look after my sons when I am no longer around?
Click here to sign and show your support.

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After We Have Gone – an article by Jude who is Mum to Daisy Hutchinson our young charity patron

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Planning for our daughter’s future is a constant source of concern. Whilst we are young enough and able to, we can look after her. We can help fight her battles and make sure she gets what she needs. Every piece of support we have got for her, has been fought for.

Lack of funding, and inconsistent staffing seems to mean that a knockback is the auto response to support needed for our children with Autism and learning disabilities, in the hope that most parents will give up, due to exhaustion or lack of understanding of the process.

I (and my ex-husband) will continue to work hard to access the support our daughter needs and is entitled to, but what about after we are gone, or too frail to do what is necessary? Who will take over from us then?

We worry that our daughter’s needs will be neglected. She will slip through the net and what will become of her then? Her disabilities and vulnerabilities mean she needs a system, or a person to be there for her.

Most of the time, I am able to not allow myself to think too much for the future. It is too scary to contemplate. But when I do, I feel my heart breaking. My beautiful girl, who brings so much light and laughter into our lives might not be cared for after we are gone.

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