Table of Contents

HK J Paediatr (New Series)
Vol 5. No. 1, 2000

HK J Paediatr (New Series) 2000;5:87

Proceedings of 2nd Hong Kong Medical Genetics Conference

Down Syndrome and Human Dignity - Rights and Opportunities

CB Chow, E Yau, S Lee

HK J Paediatr (new series) 2000;5:85-89

Proceedings of 2nd Hong Kong Medical Genetics Conference, Hong Kong Society of Medical Genetics (Selected Abstracts)
15-17 October, 1999

The prognosis Down syndrome (DS) individual has improved dramatically over the last 20 years. However, ignorance about DS and negligence of their well being; and discrimination and deprivation of opportunities is still very common and widespread. In a recent survey, most (88%) parents felt that their DS children had been discriminated upon by society. At birth, in about a third of cases news was broken in an unsympathetic, discouraging and disrespectful way. Information provided was inadequate. For infants below 2 years of age, over half indicated they received satisfactory service as a whole. Major complaints were inadequate, uncoordinated services and lack of parental involvement in decision-making. One major concern is antenatal diagnosis. The ethical and legal implications of antenatal diagnosis have not been adequately discussed in Hong Kong.

For school age DS children, they still need a wide range of services. Initial educational placement is a developmental crisis for the family. A quarter of parents expressed that assessment was not fair and accurate. The shortage of manpower in the allied health professions was serious. There was also a lack of choices for schools and educational programs. Despite over 80% of the parents in the survey would like to participate in developing the education program for the child, about one-fifth of the parents did.

Segregation is apparent in many services. Education, community service and employment are still largely a captive environment for DS persons. Hong Kong has just started integrated education in 21 schools after decades of piloted schemes in pre-school system and the English speaking schools. The Child and Youth Centres are still exceedingly cautious of having DS persons as their clients. Employment chances are very limited.

Human dignity should built on equal opportunity, we have to give equal chances to DS individuals as evident from the parental/individual choice, our school and work system and the community acceptance of DS persons.


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