The effects on the family of the presence of a mentally retarded child.

Abstract

This study conceptualizes the presence of a retarded child within a family as constituting a stress which the family attempts to cope with by bringing its resources to bear on the problem. If the stress proves too great for the family's coping mechanism institutionalization may be sought. The Institutional Sample families did not appreciably improve over the year following the removal of their child; while the Community Sample showed signs of deterioration, particularly in the areas of sibling functioning. The follow-up findings could be interpreted in two ways to support alternate biases with regard to hospitalization. Those who are generally against institutionalization for the retarded, believing that young children should remain in their own homes if possible, may view the lack of improvement in the functioning of the institutional families after the child was removed as an indication that these families should be encouraged to remain intact. In order to achieve this goal every effort would need to be made to strengthen, shore up and assist these families to cope with their retarded member or, where necessary, to supply the child with a new home (a foster or adoptive family). Those who generally favour institutionalization for the retarded may interpret the evidence of the decreased functioning of the community families who kept their child at home as supporting the need for the wholesale hospitalization of retarded persons. This was advocated by Goddard in his study of the Kallikaks (10). In the former approach the focus is on the welfare of the retarded child and in the latter the emphasis is on the welfare of the family and society. Is it not possible to stop playing ‘either/or’ and consider both? There are frequent occasions when a child needs to be separated from his family for their benefit or his and where an alternate family (foster or adoptive) cannot be found. Must the choice be between forcing the family to keep him and allowing the family functioning to deteriorate, or removing the child to a large impersonal institution? Lorimer Lodge, which has cared for young retarded women for over a hundred years and also the Harold Lawson Residence for trainable retarded children aged 6–12 years (both operated by the Metropolitan Toronto Association for the Mentally Retarded), the work of Jean Vanier in France and Glen Lowther in Winnipeg on community homes for retarded adults all demonstrate viable alternatives to institutionalization. It is becoming imperative that more adequate and humane alternatives be found than the present impersonal and huge institutions for those retarded persons who require, or could benefit from, an out-of-home living arrangement. This will require a major shift in emphasis, planning and responsibility. At present in Ontario the local Association for the Mentally Retarded is the main moving force in the building of community residences. Considering the magnitude of the need, progress has been slow and such agencies as the Children's Aid Society need to set up residences, possibly in conjunction with the local Association for the Mentally Retarded. This study may be interpreted as supporting the contention that to have a retarded child in the home is an added stress on the family. Follow-up of families who responded to this stress by institutionalizing their retarded children suggests that in many instances this is not the ideal answer to the problem for the family or for the child, but that a more complex variety of solutions is needed.