A recent Irish study (Egan, A. 1997 Caring for people with intellectual disabilities: the need for residential care. Irish Medical Journal 90 (8).) shows that people with intellectual disabilities who are highly dependent and who have challenging behaviour are most in need of residential and day services. While most health boards have long waiting lists for residential and day services, the author of the study, Dr Anne Egan, argues that priority for services should be given to families caring for a child who is physically dependent and who has challenging behaviour.
The study was conducted in the South-Eastern Health Board area. Fifty mothers whose child or adult with an intellectual disability was in care were interviewed to discover what factors prompted parents to seek residential services. These findings were then contrasted with those of fifty other mothers who had a child of the same age and level of ability but who was still living at home. The findings showed that mothers of children with an intellectual disability who had problems in the areas of toileting, feeding and dressing were more likely to request residential services than parents of people who were more independent in these areas. Also, people who were over-active, had frequent temper tantrums or inappropriate sexual behaviours were more likely to require residential accommodation than those who did not display difficult behaviours. The mothers of those children who obtained residential services reported that they were more dissatisfied with the overall help given to them by their family, relatives, neighbours and friends than were mothers of children who continued to live at home.
Parents whose child got a residential place were more likely to see themselves as not coping as well as other parents, but they found a significant decrease in family stress after their child was admitted to care. Parents whose child continued to live at home reported a greater disruption in household routine, more sleep disturbance and felt that they were more in need of a break than the mothers of children who were in care. These parents also found that having to take days off work, transport to medical specialists and damage and breakages to furniture and equipment could place considerable financial strain on them. These additional costs are not always recognised by services and the state allowance may not be enough to compensate for the expense involved in caring at home for a child who has difficulties.
Services parents want
In the South-Eastern Health Board area, parents reported that the provision of special preschools, schools and workshops, together with the support they received from families and professionals, were among the most useful types of services they obtained. When mothers were asked what services they would like to see developed in the future, they mentioned special schools, adequately staffed workshops, respite care, counselling services and in-home help during crisis situations.
The main conclusion of this study is that individuals who are highly dependent on others for daily living tasks and those with challenging and antisocial behaviour are in increased need of residential care. Another reason to seek residential care given by mothers was to plan for their child’s long-term future. Egan recommends that the information which is routinely recorded on the National Intellectual Disability Database should include a simple grading system for the individual’s level of dependence, behaviour profile and an assessment of the family’s coping skills. This type of information would be useful in planning the future expansion of services on the basis of local need, would take into account the level of community support services (i.e. schools, workshops and home support), and would be in line with the principle of equity underpinning the National Strategy.