Young disabled in the community

Summary

This chapter looks at some of the problems of young disabled people living in the community. So far there are very few ways of monitoring how persons are progressing in terms of precisely how they are managing to live at home, and the weight of stresses on the families. There is very little that can be measured in the quality of life at home, and sometimes the first evidence of care failure is the presence of a skin pressure sore. Details are given of a study of 100 young disabled people living in the community of Southampton, and some of the information given shows that a large proportion of these families are living under great strain. It is very important that methods are found for keeping in touch with such families in the community, so that warning signs of care failure are picked up and treated long before pressure sores develop. The system of having a Health Visitor whose job is to develop regular contact with such families is strongly recommended. Two methods of recording information are also given—a 24-hour chart to show the frequency of care problems in a dependent patient, and the ‘household matrix’ as a method for recording critical factors that are discovered in a patient’s life.