Background and aims Becoming independent is for young people with Down syndrome (DS) not a standard development, because of their intellectual impairment. Parents often wonder what level their child with DS might reach. This study aims to measure the level of self-sufficiency and problem behaviour in a large population based sample of 16–19-year-old people with DS.
Methods Parents of Dutch children with DS born in 1992, 1993 and 1994 were invited to participate (n=513). Data were collected by a written questionnaire for the parents, containing the Dutch SRZ (measuring social independence), the Child Behaviour Checklist, the Children’s Social Behaviour Questionnaire, and additional questions on skills and background. Differences between mean values were evaluated using t-tests.
Results Mean age of the 322 participating young people with DS was 18.3 years (52.8% boys). Considering their basic daily skills, they reached a level of around 70% of independent functioning. Girls had a higher level of functioning than boys (p<0.001), except for the subscale social orientation. With regards to behaviour problems the young people with DS had more behavioural problems on the subscales social problems, thought problems and attention problems. Only on the subscale anxious/depressed young people with DS scored fewer problems (p<0.001). Social problems were most present in the subscales orientation problems, not understanding social situations, and resistance to changes.
Conclusions Young people with DS do not reach a complete level of independent functioning. Behavioural and social problems have an important contribution to the limited self-sufficiency of this group.