The International Family Quality of Life Project, begun in 1997, involves the collaboration of a team of researchers from Australia, Canada, Israel, and the United States whose aim was to conceptualize “family quality of life” and develop a survey tool. The authors describe the basis for the conceptualization and explain the survey development process. An initial version of the survey (the Family Quality of Life Survey—FQoLS‐2000) was used to collect FQoL data across several countries in the early 2000s. The experiences of survey respondents and administrators and subsequent data analysis suggested modifications that resulted in an updated version—the FQoLS‐2006. This new version focuses on 9 areas of family life: health, finances, family relationships, support from other people, support from disability‐related services, influence of values, careers and planning for careers, leisure and recreation, and community interaction. The authors explore each of these areas in relation to 6 underlying concepts: importance, opportunities, initiative, attainment, stability, and satisfaction. Other sections entail obtaining information on the family make‐up, family member, or members, with intellectual disability, and an overall summary of FQoL. The authors note that information from the FQoLS‐2006 should be useful for a wide variety of purposes related to providing supports to individuals and families.

The FQOLS-2006 provided a comprehensive measure of FQOL, which, with some additional modifications, could be used to better inform service provisions and ultimately enhance the quality of life of people with intellectual/developmental disabilities and their families.

A superiority of verbal intelligence over non-verbal intelligence, relative strengths in verbal memory and basic reading, and a relative weakness in visual/spatial memory are likely to be core characteristics of children/adolescents with 22qDS, transcending performance features that are typical of individuals with low IQ.

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These findings appear to provide support for the widely held clinical opinion that parental diagnosis of cleft lip and/or palate impacts how parents cope with and adjust to their child's diagnosis.