Specialized Housing Policies, Resources, and Services for Americans with Multiple Sclerosis: Priorities for a National Agenda

By Sheppard-Jones, Kathy; Bishop, Malachy et al. | The Journal of Rehabilitation, October-December 2013 | Go to article overview

Specialized Housing Policies, Resources, and Services for Americans with Multiple Sclerosis: Priorities for a National Agenda


Sheppard-Jones, Kathy, Bishop, Malachy, Kinyanjui, Benson, Roessler, Richard T., Rumrill, Phillip D., Waletich, Brittany, Umeasiegbu, Veronica, The Journal of Rehabilitation


Housing and community living issues are a significant concern for many people with Multiple Sclerosis (MS). Characterized by a range of symptoms that may directly or indirectly affect mobility, personal independence, community participation, employment, and financial status, MS has the potential to affect the housing situation of persons with MS through a variety of avenues. MS is a chronic immune-mediated disease of the central nervous system that affects over 400,000 people in the United States, or approximately 1 in 750 Americans at any one time (Fraser, Kraft, Ehde, & Johnson, 2006; National Multiple Sclerosis Society [NMSS], 2012). The clinical course of MS is characterized by episodes of neurological symptoms frequently followed by permanent neurological deficits, increasing functional limitations, and decreased mobility (Buchanan, Wang, Martin, Ju, 2006). As a result, many individuals with MS reside in housing with architectural barriers to mobility, independence, and safety, placing them at risk for falls, injuries, and a restricted lifestyle. As a further consequence of disability status, limited mobility, and decreased financial resources, people with MS may face discrimination and misinformation in seeking accessible or specialized housing.

The term 'specialized housing' is defined as housing that is designed to be, or has been made to be accessible, including needed supports. Specialized housing may include the modification and adaptation of an existing residence (such as with the addition of ramps or grab bars or similar features), housing that is designed and built to be accessible, assisted or supported living, nursing care, and a variety of other community living options. Although housing resources for, and housing research about persons with disabilities in the US are well established, the specialized housing needs and experiences of people with MS have received very little research attention. Information about the housing needs of persons with MS has been based primarily on anecdotal evidence, and data on this subject have been extremely limited.

In order to increase the limited understanding of the specialized housing needs of Americans with MS, the authors recently completed a two-year research project, sponsored by the National Multiple Sclerosis Society, to evaluate the need for specialized housing, the resources available to meet these needs, and the barriers faced by persons with MS seeking accessible and affordable housing. One goal of this project was to identify and prioritize the specialized housing policies, resources, and services that are most important to people with MS. This was achieved though a process of developing recommendations based on information provided by participants in a large national survey of American adults with MS, and then assembling an expert review panel to prioritize these recommendations. The purpose of this article is to present the results of this process in the form of recommendations for specialized housing policy, resources, and services for people with MS. In order to contextualize and provide background for the resulting recommendations, we begin with a brief review of the key housing issues faced by adults with MS. We then describe the methods and present the results of this research, and discuss their implications for rehabilitation professionals.

Specialized Housing Issues for Adults with Multiple Sclerosis

Maintaining ones housing has been identified as a major concern among both working age and older adults with MS (Finlayson, 2004; Finlayson & Van Denend, 2003; Iezzoni & Ngo, 2007). Over one-in-four people with MS in the US reports being "worried a lot" about not having sufficient money for food, housing, and utilities (Iezzoni & Ngo, 2007). In a study of the concerns of older adults with multiple sclerosis, Finlayson (2004) found that their three primary concerns were loss of mobility and independence, becoming a burden to others, and the fear of having to go to a nursing home. …

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