Housing and Attendant Care
Individuals go through a demanding functional rehabilitation process following a spinal cord injury (SCI). Having an SCI involves taking into account important issues (e.g., financial support, insurance, technological devices or equipment, etc.) when planning for discharge home. Appropriate housing and attendant care are cornerstones of successful reintegration. In cases where individuals are more vulnerable, the quality of these resources, in particular in term of functionality and availability, can make the difference between independent living or not.
For the past three decades these issues have been of interest to and addressed to some extent by both the academic and disability communities. The work done by the disability community has been oriented towards the perspective of increasing access to more specific resources such as support and equipment, as well as to mainstream resources such as transportation, housing, health, and educational services. These advocacy actions have been undertaken to increase choice and control over issues related to the living arrangements of persons with disabilities, in particular those with SCI. Within the academic community many of the studies related to independent living have focused largely on impact research relating to several dimensions of the life of persons with disabilities, as well as on the community as a whole. We present in this chapter the findings involving persons with SCI.
Housing is a fundamental need of all people. Finding appropriate living arrangements within the community can be difficult for many individuals with SCI after they are discharged from rehabilitation. Yet housing is key to a successful transition from rehabilitation to community reintegration. Because of the cost associated with altering the physical environment to accommodate an individual with an SCI, housing presents a financial challenge and therefore housing can be a significant obstacle limiting one’s opportunities to resume an active role and fully integrate within the community. This issue is also connected to two other important factors: 1) community resources related to availability and capacity to provide support, and 2) opportunity to choose one’s living environment. Both factors have been documented as playing an important role in the quality of community reintegration and residential satisfaction.
Attendant care services are a resource designed to provide a person with SCI with support so they can engage in activities of daily living that are considered important. This support is usually put into place after discharge from rehabilitation when the individual returns to his/her community. Several important decisions are required when considering attendant care services, such as who will provide the support, how it will work, who will pay for it, etc. At the same time, the relationship between rehabilitation services and community resources must be also considered in the context of the built environment to ensure the best opportunities for independent living among individuals with SCI. For example, the quality of the built environment, particularly housing adaptations, is very important because it can influence how the attendant care services will be provided in terms of the intensity and frequency of care.
In this chapter we provide a review of literature related to housing and attendant care services, and the influence of these factors on the quality of life of individuals with SCI living in the community. In order to develop a more comprehensive analysis of this material, the literature selection and review methods used have been expanded beyond those traditionally used for the other SCIRE reviews (see SCIRE Methods). Specifically, two new databases with a focus on the social sciences were searched (Social Sciences Abstracts and Social Work Abstracts), and the inclusion criteria were broadened to include any study (including qualitative studies) that was at least partially community-based which examined factors influencing satisfaction with housing and attendant care needs after SCI, issues with access, and/or interventions improving outcomes.