Community care for adults with Williams syndrome: how families cope and the availablitiy of support networks

By: Udwin, O (et al)_.
Series: Journal of Intellectual Disability Research 42 (3) 1998: 238-245. 1998Content type: text Media type: unmediated Carrier type: volume Subject(s): COMMUNITY CARE | COPING | FAMILIES | SUPPORT | WILLIAMS SYNDROMESummary: A study of the adjustment difficulties and needs of 70 adults with Williams Syndrome found that the majority continued to live at home and remained heavily dependent on their families for their self-care. Twenty nine families(41.4%) had no contact with a social worker in the preceding two years and 34 out of 48 families whose children still lived at home (70.8%) had no access to respite care. Advice regarding benefits and appropriate living and occupational arrangements for the adults was also patachy. Despite progressive medical problems and high rates of behavioural and emotional difficulties only 20 adults (29%) were receiving regular health checks while 21 (30%) had some contact with a mental health service in the preciding 2 years. In the majority of cases, families continued to shoulder the main burden of care for their sons and daughters with Williams Syndrome well into adulthood, with little support from statutory and voluntary agencies. The implications of these finds are considered with regard to the principles of community care. [AJ].
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A study of the adjustment difficulties and needs of 70 adults with Williams Syndrome found that the majority continued to live at home and remained heavily dependent on their families for their self-care. Twenty nine families(41.4%) had no contact with a social worker in the preceding two years and 34 out of 48 families whose children still lived at home (70.8%) had no access to respite care. Advice regarding benefits and appropriate living and occupational arrangements for the adults was also patachy. Despite progressive medical problems and high rates of behavioural and emotional difficulties only 20 adults (29%) were receiving regular health checks while 21 (30%) had some contact with a mental health service in the preciding 2 years. In the majority of cases, families continued to shoulder the main burden of care for their sons and daughters with Williams Syndrome well into adulthood, with little support from statutory and voluntary agencies. The implications of these finds are considered with regard to the principles of community care. [AJ].

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