New book on the lived experience of disabled people and how their voices are ignored
In 1989, I, went to Sweden with a group of disabled young people, to see what lessons could be learnt from the Swedish approach to supporting people with disabilities.
Now 32 years later, one of these now not so young people, Don O’Neal, has written a powerful book about his and experiences of trying to have his voice heard and his needs met from the care system.
At the heart of the book is a collection of case studies which show how some disabled people are living in a state of fear and left to struggle without the information and care they need to live a happy life. The case studies are a powerful insight into the alarming and disturbing treatment of some disabled people at the hands of social workers and the adult social care system. They illustrate the failure of the social work industry to carry out their duties and responsibilities and the lack of ethics and empathy in the way some social workers practise.
“The case studies give a frank and detailed account of what it can be like for adult social care service users dealing with social workers and the hoops they have to jump through to get what they are entitled to.”
“The voice of disabled people who suffer on the receiving end of adult social care should be heard so that improvements are made in the way adult social care is administered. “
You might not agree with all of Don’s observations or those of the other disabled people he interviewed, but the book deserves to be read if only to remind everyone responsible for developing and delivering care how important it is to systemically embed the voice and lived experience of disabled people into the management and evaluation of the care system. The book also outlines the ways money could be saved and how budgets could be used more effectively.
“The Book is a raw reminder of how people can be left behind and ignored and how legislation does not always lead to culture changes in service delivery.”
Order the book: The Lack of Care Act 2014: Service users’ perspectives of a failing adult social care system.
This blog was originally published by Leicestershire Cares.