Richard Richard is 57 and is deafblind, with severe learning disabilities. He lives with his sister, Sharon, who has become his primary carer. Sharon supports him with personal care, liaising with social care, arranging medical appointments and leaving the house to visit the shops. Richard hasn’t always lived with Sharon. He used to live in a local independent living scheme but the placement broke down because of concerns about the quality of care. Sharon recalls: “The quality of the care there was so poor, his health and wellbeing deteriorated dramatically. We had no choice but to take him out of there, he couldn’t stay there anymore. It was then he moved in with me and my family there were no other options” – Sharon now balances caring for Richard with a full-time job. Richard has a direct payment which the family use to employ a friend to be his personal assistant when Sharon is at work. Sharon lives with high levels of worry and anxiety about Richard’s future and what would happen if she wasn’t there to fight his corner and make sure he can secure the support he needs: biggest fear is him ending up in an institutional care setting and that there wouldn’t be “My anyone to make sure he gets the support he needs. would love for him to be able to move into a “I good independent living scheme but I’m not optimistic about this happening. Even If we could find somewhere, Richard has had such horrific experiences in the past that I can’t see him agreeing to move out of the family home again. I will never trust the care system with Richard ever again and that is why I fear what will happen when I am gone.” support I would not be able to socialise or go out to do things I like.” “Without tend to under-estimate my son and they may not be as ambitious for him as I am.” “People
Richard Richard is 57 and is deafblind, with severe learning disabilities. He lives with his sister, Sharon, who has become his primary carer. Sharon supports him with personal care, liaising with social care, arranging medical appointments and leaving the house to visit the shops. Richard hasn’t always lived with Sharon. He used to live in a local independent living scheme but the placement broke down because of concerns about the quality of care. Sharon recalls: “The quality of the care there was so poor, his health and wellbeing deteriorated dramatically. We had no choice but to take him out of there, he couldn’t stay there anymore. It was then he moved in with me and my family – there were no other options” Sharon now balances caring for Richard with a full-time job. Richard has a direct payment which the family use to employ a friend to be his personal assistant when Sharon is at work. Sharon lives with high levels of worry and anxiety about Richard’s future and what would happen if she wasn’t there to fight his corner and make sure he can secure the support he needs: “My biggest fear is him ending up in an institutional care setting and that there wouldn’t be anyone to make sure he gets the support he needs. “I would love for him to be able to move into a good independent living scheme but I’m not optimistic about this happening. Even If we could find somewhere, Richard has had such horrific experiences in the past that I can’t see him agreeing to move out of the family home again. I will never trust the care system with Richard ever again and that is why I fear what will happen when I am gone.” “Without support I would not be able to socialise or go out to do things I like.” “People tend to under-estimate my son and they may not be as ambitious for him as I am.”
campaign-when-im-gone-securing-long-term-care-and-support-for-disabled-adults.docx