Respite care for disabled persons in general – and for mentally retarded persons specifically – is a service that provides disabled individuals residing in the community with out-of-home supervision and care for limited periods of time. Its primary contribution is to give the family a respite from the burden and responsibility of providing care, and thus preventing burnout, and even institutionalization of the disabled person.
Respite care for mentally retarded persons in Israel has made many advances in recent years, and there are currently 18 respite care facilities throughout the country. Of these, four are independent facilities functioning purely (or primarily) as respite care facilities; six are located in day centers and utilize the centers’ services when they are not otherwise in use, mostly during the weekend and holidays; and eight are located in residences that provide long-term care to mentally retarded persons but also allocate a number of beds for the provision of short-term respite care. In 1999, about 700 individuals of all ages utilized respite care services.
The goal of the study was to evaluate these respite care programs. It included structured face-to-face interviews with directors and other staff members at 16 respite care facilities, and telephone interviews with 127 parents whose children received respite care in 1998 or 1999. The following questions were examined:
- What are the characteristics of the respite care programs?
- What are the characteristics of respite care service users?
- What are the utilization patterns of respite care services?
- How do the parents evaluate the program and its impact?
The following are selected findings:
- Those who use respite care services are primarily young (76% of the respondents were aged 4-20), male (61%) and Jewish (76%), and many are from Jerusalem (31%). Almost half (44%) suffer from severe or profound retardation; most (62%) suffer from additional problems. Their parents say they require much time and energy. Most of the users stayed at a respite care facility for only very short periods of time, although others stayed for a week or more. Most utilized the service more than once; some of them did so on a regular basis.
- Satisfaction levels of the parents varied according to the user’s age and level of their child’s retardation. The highest levels of satisfaction were reported for users aged 11-20, and the lowest for children aged 10 or less. Higher levels of satisfaction were reported by the parents of more mildly retarded users than by the parents of more severely retarded users.
- Satisfaction levels also varied among the pure respite care facilities, those located at day centers, and those located at residences for the mentally retarded. Although the respite care facilities at residences were usually considered to have the best and most accessible services, and the respite care facilities at day centers were considered to have the worst and least accessible services, the parents of children who used the day centers reported the highest levels of satisfaction, while the parents of children who used the residences reported the lowest levels of satisfaction. This apparently is due to the fact that most of those who used respite care facilities at day centers had previously used the center’s services, and as such were already familiar with the staff and physical surroundings.
The findings of the study will be used by the Division of Services for Mentally Retarded Persons of the Ministry of Labor and Social Affairs in policymaking for the development of respite care services. The study was funded in part by the Central Fund for the Development of Services for the Retarded in the Local Councils.