Quality of life for persons with developmental disabilities

A uniform and consensus definition for quality of life is not currently available. Although the topic of quality of life is pertinent for individuals with neurodevelopmental and related disabilities, the most appropriate means for assessing it as a basis for developing or evaluating programs need to be identified. A global viewpoint of one's quality of life when emotional, physical, or cognitive limitations are manifested may be too narrow for capturing a realistic perspective for planning programs. A more holistic approach that includes both individual and parental or caregiver perceptions may better address the conceptualization of quality of life for persons with developmental disabilities. Models of quality of life for this population reflect lifespan challenges for achieving personal satisfaction in the following areas: (1) physical well-being or functional status, (2) social and emotional well-being, (3) material well-being, and, (4) developmental abilities. This paper addresses current models of quality of life and methodological considerations for investigating this concept with persons who have developmental disabilities. Multidimensional methods of measurement, possibly including proxies, are necessary for a comprehensive approach to studying such an elusive construct, particularly when cognitive function is limited.