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SERVICES FOR CHILDREN WITH DOWN SYNDROME (DS) IN HONG KONG

KL Yam, CM Yu, CB Chow, J Lau

Hong Kong Down Syndrome Association (HKDSA)

Accessibility to medical, developmental, social and educational services is essential for children with DS to develop to full potential.

Objective: To evaluate service provisions, utilization and satisfaction from the perspective of parents of DS children.

Method: Questionnaires on services provision, perceived need, access, referral time, end-user satisfaction were distributed to members of HKDSA with children aged 0 to 18 years of age.

Results: 98 questionnaires were collected. Almost all received services from paediatricians, however only 65%, 61%, 39% and 23% received ophthalmology, ENT, dental and genetic services respectively. About 50% had received services from allied health professionals. Majority was studying in special education facilities. The most needed services were speech therapy, educational assistance, assessment and information provision. Parents perceived speech therapy, occupational therapy and physiotherapy most difficult to access. Majority was satisfied with the services provided. 92% of families were satisfied with services provided by DS clinics. Level of satisfaction was not related to perceived need, referral time, follow up frequency or perceived difficulty in access to service.

Conclusions: The study provided important information regarding the service need of families with DS children. Services provided by the DS Clinics, speech therapy, physiotherapy and occupational therapy should be strengthened. Referral to Ophthalmology, NET, Dental and Genetic Clinics should be enhanced.