Community care for adults with Williams syndrome: how families cope and the availability of support networks.
Adults with Williams syndrome who live with family get almost no professional help—look for them and plug them into adult services now.
01Research in Context
What this study did
Udwin et al. (1998) mailed short surveys to UK families who had an adult son or daughter with Williams syndrome.
They asked where the adult lived, who helped each day, and what services the family got.
Most replies came from mothers in their fifties who still cared for their grown child at home.
What they found
Almost every adult with Williams syndrome still lived with parents.
Families said they gave most care themselves and saw little help from social workers, day programs, or respite staff.
Parents felt tired and worried about who would help when they got older.
How this fits with other research
Domaradzki et al. (2024) asked 32 Polish parents of younger children with Williams syndrome the same questions. They got the same answer: little outside help and high parent stress.
Dudley et al. (2019) surveyed adults with autism who lived at home. These families also reported low service use and many unmet needs.
The pattern holds across both diagnoses and age groups: when an adult with a developmental disability lives with family, professional support is scarce.
Why it matters
If you serve adults with developmental disabilities, check where they live. Those at home often fall off the radar. A quick caregiver stress screen and a referral to respite or adult day funding can lighten the load before crisis hits.
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02At a glance
03Original abstract
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 had no contact with a social worker in the preceding 2 years, and 34 out of the 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 patchy. 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 had some contact with a mental health service in the preceding 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 findings are considered with regard to the principles of community care.
Journal of intellectual disability research : JIDR, 1998 · doi:10.1046/j.1365-2788.1998.00122.x