Specialized housing needs of Americans with multiple sclerosis: Descriptive results of a national analysis

BACKGROUND: This article presents the results of a comprehensive national analysis of the specialized and accessible housing situation among Americans with multiple sclerosis (MS). This study represents the first national assessment of specialized housing among Americans with MS. OBJECTIVE: The objective of this study was to comprehensively evaluate the specialized housing situation for US adults with MS, and specifically, to identify the most pressing needs and most frequently identified barriers to achieving safe and accessible housing. METHODS: In order to achieve a representative national survey, a sample of 5082 adults with MS was randomly selected from the membership of the North American Research Committee on Multiple Sclerosis patient registry and selected chapters of the National Multiple Sclerosis Society in states in which the NARCOMS registry had lower representation. The sample represents approximately 1% of the estimated 400,000 Americans with MS, and includes persons with a wide range of geographic, age, racial/ethnic, income, educational, and residential characteristics. RESULTS: Residential accessibility was limited for almost 20% of the participants. A large percentage of people with MS reported that they do not have accessible bathroom/bathing facilities, an accessible kitchen, or a needed wheelchair accessible exterior entrance or ramp to their entrance. Awareness of specialized housing resources was very limited. Particularly at risk for requiring specialized housing were adults over age 50. CONCLUSION: The specialized housing needs of Americans with MS are diverse and extensive. Additional research, policy, and advocacy attention to the housing needs of this population is needed. Specialized housing should be made a larger professional focus among rehabilitation professionals.