The individual supported living (ISL) manual: a planning and review instrument for individual supported living arrangements for adults with intellectual and developmental disabilities

Abstract

Following the closure of large residential facilities over the past several decades, emphasis on community living for adults with developmental disabilities has strengthened. However, the concept of community living is ambiguous. The term is often associated with congregation of people with disabilities in ordinary houses 'in' the community. Group homes, the most common contemporary formal expression of 'community living', may use ordinary houses and accommodate a small number of residents comparable to a large family. Individual supported living (ISL) arrangements around a single person with a disability using person-centred principles are occurring with increasing frequency. The ISL manual was developed over 4 years in two sequential research projects to produce a quality framework articulating ISL and operationalising the framework into a review and planning instrument for ISL arrangements. The ISL manual was developed in three stages and overseen by a reference group of key stakeholders purposively recruited as well-versed in ISL. The first stage operationalised the quality framework over two half-day workshops with a group of key informants. Participants identified indicators and sources of evidence for each attribute of the quality framework. The quality framework, indicators, and sources of evidence were compiled into an initial evaluation instrument of nine themes consisting of 27 attributes. This was piloted in two rounds to enhance the utility of the instrument and develop the final manual which contained eight themes and 21 attributes. A comprehensive literature search was carried out to identify relevant empirical ISL studies. The literature search identified four empirical studies that incorporated ISL over the preceding 3 years. A previous literature search from the first research project that produced the quality framework spanned 27 years and identified five empirical studies. We concluded that the empirical base for developing evidence for the nature and outcomes of ISL arrangements was sparse. The ISL manual and scoring booklet developed in the current research project includes six illustrative case studies of ISL, instructions for potential users to review living arrangements or set up a new arrangement, and the review framework consisting of descriptions of themes and attributes, indicators, and sources of evidence. The dearth of empirical studies of ISL arrangements for people with developmental disabilities, despite increased policy emphasis on individualised options, underscores the importance of planning and review tools to promote quality outcomes. The ISL manual can assist adults with developmental disabilities, families, carers, and service providers to plan and review ISL arrangements. Further research will enhance the properties of this instrument and establish the relationship between quality of ISL arrangements and outcomes such as quality of life, and participation and inclusion.