Introduction to Lifetime Of Caring

The idea for the Lifetime of Caring project grew out of the work of the family carers sub-group* where real concern was expressed that families are often viewed negatively by services. Families are either seen as a problem, over protective or holding the person with learning disabilities back. The contribution that families make in supporting their son or daughter is frequently minimised. At the same time families expressed their frustration and anger at the way services often marginalise them.

In particular, older family carers emerge as a group who deserve more recognition for the long years of support and care that they devote to their learning disabled son or daughter. Not only does the evidence suggest they are a substantial group of carers but, more worryingly, their learning disabled son or daughter is less likely to be receiving and individualised service, if they are receiving any at all. ('Fair Shares For All', Walker C. & Walker A. 1995)

*Which was brought together by the Department of Health as part of the consultation process for the White Paper – ‘Valuing People: A New Strategy For People With Learning Disabilities in the 21st Century’ (DoH. 2001)

During the consultation older family carers talked of their long years of struggling with services to get a good deal for their son or daughter. Many has given up and were continuing to battle on with minimal, or even, no support. Nearly all expressed concern about what would happen to their beloved son or daughter when they could no longer support them through either ill-health of their own death.

It is very good news that 'Valuing People' does recognise older family carers and their adult children as a priority. The Lifetime of Caring project is designed to help services think about how they could better support these families.

The material is divided into three main parts. The first section, Families and Valuing People is designed to help people who plan to manage services to recognise the issues and work to achieve the objectives set out in the White Paper. This section can be used by Partnership Boards to think about how they are going to develop work with families growing older together.

The second part of the material is designed as Open Learning Materials for people working in services. The material offers people the opportunity to reflect on their own working relationships with families and what they can do to engage older family carers more successfully.

The materials can be used in a number of different ways. They are written to encourage the reflective learning of an individual reader. But they could also be used to encourage group learning through discussion. Individual trainers, delivering in-house training might want to use some or all of the reflective exercises to stimulate learning and discussion. All of these exercises have been piloted extensively in a number of different service settings.

Finally, the third part of the material is a Resource Section that provides information on services that have successfully developed innovative ways of supporting older family carers and their adult children with learning disabilities. It also makes suggestions for further reading and useful website addresses.