Introduction

Despite considerable policy and legislative changes over the past century, society continues to exclude, neglect and frequently damage people with learning disabilities. Hence the need for families to advocate on behalf of their relatives. How might social work respond?

At the time this chapter was written an initiative from the English government was launched to pilot a named social worker for people with learning disabilities (SCIE 2017). The fact that such an initiative was perceived to be needed in 2017 is, at first sight, quite astounding. As I will demonstrate in this chapter there is overwhelming evidence from families dating over the past 50 years that they want a trusted person to support them both in navigating around the services they may require, and in managing the emotions and stresses associated with bringing up and supporting a family member with learning disabilities. There is also evidence, almost as convincing, that having that trusted person can avert a crisis when family carers become ill. But, with few exceptions, families have looked in vain for such an individual.

The Named Social Worker initiative was directed at individuals at risk of hospital admission or admission to an Assessment and Treatment Unit, not families. This continues a trend that was noted as long ago as 1996 by researchers Burke and Signo (1996: 109): ‘Many professionals consider that their work is with the person with disabilities, independent of their family … this could worsen family functioning because the whole family needs support and counselling’.

Although unfashionable, I tend to agree that attention to the whole family, particularly when the person in question lives with them, is vital. For that reason, in this chapter I draw extensively on the experiences of the families of people with learning disabilities and the work of local voluntary groups representing families. I use this to consider what role social work has played, and might play, in their lives. Much of this data comes from research conducted over a long period by the Open University's Social History of Learning Disability Research Group (Rolph 2002; Rolph et al 2005; Tilley 2006; Walmsley 2000) of which the author is a founder member. The chapter's scope stretches back to the mid twentieth century, as that was the period when collective parent advocacy began to take shape, and social work to respond.