It’s good to hear from you. Although we are agonising at the moment about how this new phase of Ben’s life is going to pan out, we realise what a lucky man he is, as so many of his compatriots are struggling just to enjoy their lives with little support.
we have spent Ben’s whole life trying to enable him to be as independent of us as possible, like his two siblings, as we believe that everyone has this fundamental right, and if it requires significant funding and support from agencies whose sole purpose is to do just that, rather than us, then we consider it to be his and our rights as citizens.
its not been easy, and has caused immense anguish to us both over the years, but Ben’s life now is a testament to what can be achieved. No adult with learning disabilities should be put in a situation where they are totally dependent on a family member in today’s Britain. and no family member should be feeling that they are the only ones with sole care and responsibility. A word of caution though: ultimately we are still fighting with and for him every step of the way and will do until we die, but we have been enabled ourselves to lead a much more normal life than if he had been living with us.
I really feel for you. You must be feeling quite wretched, thinking that all of the responsibility is on your shoulders. Where in Wales do you live? Ben lives in Pembrokeshire but one organisation that has provided him with an increased amount of freedom and feelings of self-worth is PPF; Pembrokeshire People First. This organisation, I am sure, exists in other counties too and it may be worth searching it out.
if you would like more info regarding all of the things we have gradually implemented to enable Ben to live independently, don’t hesitate to get back to us. When my husband and I read your message, we both felt profoundly sad. You shouldn’t have to feel like this!