For 60 years, Sense has provided support to disabled people with complex communication needs and their families.Throughout this time we have seen how devoted family members play a key role in supporting, enabling and empowering their loved ones. Parents and family members provide support day-in and day-out, and year after year, often with limited opportunities to take a break. They also often become experts in their loved ones’ care; co-ordinating support and advocating on their behalf. We know that as carers of disabled adults become older, their caring role becomes harder. They may lack the energy they once had to deal with the day-to-day tasks and responsibilities, and once they begin to develop their own health issues and illnesses, may quickly lose the ability to provide high levels of care. It is a common experience for the families we support to worry about ‘what will happen to my loved one when I’m gone?’ Our report shows that over two thirds of people caring for a disabled relative fear for the future. Despite this, few have felt able to put a plan in place – 75 per cent of families have not made a plan for what should happen when they are no longer able to provide care. 75 per cent of families have not made a plan for what should happen when they are no longer able to provide care.
helpfamiliesplan Executive summary Families of disabled people with complex communication needs often provide their loved ones with around-the-clock support. Family carers provide support day-in and day-out, and year after year, often with limited opportunities to take a break. Although many disabled people with complex needs will live independently in residential services or in supported housing, many others remain living in the family home well into adulthood. As a result, family carers often continue to provide a high-level of support for their loved ones, as they themselves enter older age. Due to the central role they play in providing care and support, many family carers have profound fears about what will happen when they are no longer able to fulfil their caring role. Despite this, only 25 per cent of families have felt able to make concrete plans about who should care in the eventuality of their illness or This situation is creating profound uncertainty and worry for the future among disabled people and their families. It also means that some disabled people with complex communication are at risk of
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.”