Abstract
Supporting young children, who experience complex multiple disabilities in their homes and communities, has become an important feature of early intervention programs throughout the country. How parents and professionals view quality of life issues for these young children can provide information for interventionists, policy makers, and care givers. Qualitative research methods were employed over a three-year period to investigate perceptions of parents and professionals regarding support for young children who experience complex multiple disabilities.
Descriptive themes emerged from the data that characterize features of support resulting in quality of life for young children living in rural Alaska who experience complex multiple disabilities. Some of these themes were “getting the right equipment at the right time,” “caring and consistent professionals,” and “responsive and flexible medical and support systems.” Findings indicated discrepancies between parents who live in rural Alaska and professionals over (a) perceptions of what support means and (b) the focus of some policies and systems.
Get full access to this article
View all access options for this article.