Handicaps “unexplained”

Press, 19 May 1981, Page 19

Handicaps “unexplained”

NZPA Brisbane Many parents of mentally retarded children feel they are kept waiting far too long before being told the extent of their child’s handicap, according to an Auckland senior, social worker, Mr Russell Jaffe. Mr. Jaffe told a section of the Australian and New Zealand Association for the Advancement of Science that a survey had revealed that periods of one to two years were not uncommon before parents were. told.

“This period of waiting, searching,; hoping, could be an agonising one indeed. Several parents noted that it was actually, with considerable relief that they were finally told the child’s true diagnosis,” he said. Mr Jaffe, who works at Carrington Hospital in Auckland, made a detailed survey of 50. mentally retarded children to study the effect on families and their lifestyles. He was investigating the extent to which they were able to cope and the support that, they got from their wider family and social network and from the social services.

Mr Jaffe said that for most parents it mattered little how they were told of their child’s problem — it was important that they were told.

The degree of support they were offered in the first year after diagnosis was equally important.

Amongst other findings of the survey were:— • Fear of the future showed out prominently as, the most difficult aspect of g adjusting to having a- retarded child; . • About half of those who had no more children were concerned about the possibiliy of having another retarded child, or at the stress of having to cope with additional children; • Nearly two-thirds of the parents felt the need to have m,ore children in order to balance their family; and • Fairly large groups of families had practically no

: supporrat ail from the wider family — grandparents, un- ! des and aunts (in some cases ; .. grandparents could not accept the handicapped child). The . survey showed that parents felt generally they became -more tolerant and understanding after their' child's mental retardation had been diagnosed, and this was reflected in the attitudes - of other children in the family. “However, many spoke of how they had extremely difficult times in the past, particularly the first five years. “Many parents felt that help in the very first years was absolutely essential, and

thus the importance of the development of (early intervention) programmes can clearly be seen. “The support that families actually did receive was generally of high quality, but often, the services were fragmented ’and parents had to search them out and make impassioned demands before help;was given. .

“Agency support ought to be seen as a right, and not a privilege.” said Mr Jaffe. He said that the use of hospitals and hostels to care for the children at times to give the parents relief was greatly appreciated.