Psychiatric disability in the community : Surveying the social landscape in the post-deinstitutional era

This dissertation presents a discussion of life in the community for people experiencing psychiatric disabilities in the post-deinstitutional era, with the goal of developing knowledge that can suggest a focus for planning more relevant services and supports. While evaluations of deinsitutionalization have focused on possibilities for providing community, rather than hospital-based services for these individuals, the intention was to support a participatory life in the community, a life defined by much more than just care and treatment. The Mental Health Care Reform of 1995 in Sweden paved the way for this more community-based view of needs related to psychiatric disabilities, as local social services became responsible for supports to a participatory life, “like all others”. The general aim of this dissertation was to explore and analyze the results of a series of surveys of psychiatric disability, in order to develop knowledge of the social context of the lives which individuals experiencing these disabilities live in the community. More specifically, the aim was to; • describe contacts/interactions between these individuals and the societal organisations with which they seek services or support. • describe characteristics and needs of the individuals identified in these studies as expressed by representatives of the helping system and users who participated in the studies. • develop knowledge of the mechanisms involved in these patterns of seeking support by exploring and analyzing the empirical results within the context of theoretical (social) approaches to understanding psychiatric disability. The findings of this research are based on an analysis of the quantitative and qualitative results of three studies involving seven municipalities in northern Sweden. Of the 2385 individuals who personnel identified as meeting the criteria for a serious psychiatric disability, approximately half did not have active contact with the formal mental health system. They did however seek services, supports and opportunities that they saw as relevant to their lives and needs as community members. These included health, housing and financial assistance as well as opportunities for education and employment. Various mechanisms operating in the community, including stigmatizing attitudes, exclusionary practices and organizational systems and rules, were seen by respondents as obstacles to these individuals developing meaningful and participatory roles. Social approaches, when utilized to explore and understand issues regarding psychiatric disability in the community, support a focus on the social landscape in which ndividuals experience disability-related needs, as well as the dynamics of the disability experience. While in the deinstitutional era, needs were assessed relative to the individual’s relationship to the psychiatric care system, in the post-deinstitutional era, they should be assessed from a participation-relative perspective, where their position as community member, rather than as patient or client, describes the social location of need. Specialized support to general community resources and services in addition to psychiatrically defined supports, would likely reach many, especially younger individuals who might otherwise become seriously disabled