Specialized housing adaptation in multiple sclerosis: Relationships to demographic variables

3.1 Specialized housing

Although MS can result in considerable disability, the disease does not significantly reduce life expectancy unless the disability associated with the disease is severe (Weinshenker, 1995). Severe disability occurs in approximately 10% to 15% of all cases of MS (Minden, Marder, Harrold, & Dor, 1993), therefore, the majority of people with MS can expect to live as long as their peers. Having an accessible living environment enables individuals with MS to live independently at home with their families. Specialized and adaptive housing therefore, promotes quality life for individuals with MS and help the individuals cope with the challenges posed by MS. Despite the importance and role of housing to overall well-being, people with disabilities face lack of access to specialized housing in America due to discrimination, limited economic power and lack of modified housing that meet their needs. In a U.S Census among the 54 million people with disabilities, less than half owned or rented their own homes (Feinstein et al., 2006).

3.2 Age, multiple sclerosis and specialized housing

MS is typically diagnosed among persons between the age of 20 and 50 years. However, about 5% of all patients with MS experience the onset of their disease under the age of 16 years (Banwell, Ghezzi, & Bar-Orr, 2007). The natural history of pediatric-onset MS is different from the adult-onset disease. With pediatric-onset, MS takes longer to reach irreversible disability status; because MS onset occurs at a younger age, disability develops at a younger age as well.

The impact of childhood-onset MS on cognitive functioning has been recently explored. At least 30% of children and adolescents with MS perform significantly below age-expected normative levels on cognitive measures of executive functions, processing speed, attention, language and working memory. Such deficits have a major impact on academic functioning, and on social relationships (Banwell & Anderson, 2005). The high relapse rate and the morbidity of MS in the pediatric population has provided impetus for initiation of disease-modifying therapies (DMTs) that have shown to reduce relapse rate, disease progression, and to limit cognitive decline in adult patients with MS (Fisher, Priore, & Jacobs, 2000).

A new study conducted by pediatric MS specialists at the University at Buffalo has found that children with MS and other pediatric demyelinating disorders are at increased risk of childhood obesity, compared to children without these disorders. The findings were based on a study conducted by other researchers showing an association between obesity in adolescence and MS in adulthood (Ramanathan et al., 2011). MS patients at any age may have less cognitive reserve and, therefore, a lower threshold of tolerating fatigue and poor sleep than the general public (Ghezzi et al., 2002). However, adults may have greater stressors and a more unpredictable lifestyle compared with the structured daily routine for the school-age pediatric population, which is manifested as higher fatigue in adults with MS. Although fatigue and sleep disturbances have been studied in adult MS, very little is known about fatigue, sleep disturbances, and daytime sleepiness in pediatric-onset MS (Zafar, Ness, Dowdy, Avis, & Bashir, 2012). Amato et al. (2008) confirmed the association between fatigue and depressive symptoms in pediatric MS.

Few researches have systematically examined the health-related concerns of older adults (60 years and above) with MS. The current knowledge about aging with MS is inadequate to properly identify what the focus of interventions for this population should be. Finlayson (2002) found that the most common symptoms of older adults with the MS are fatigue, problems with balance, and weakness. In addition, those older adults reported having the most difficulty in doing heavy housework, making hot meals, managing finances, and bathing. Overall, most participants of that study reported their health as poor. Fleming and Blake (1994) found that older adults with MS were more likely than age matched peers to have urinary infection, pneumonia, septicemia, and cellulites, and less likely to have heart attack or failure, diabetes, and lung disease. These findings suggest that older adults with MS probably have different medical needs than their peers.

Most individuals with MS in all ages face common manifestations of symptoms such as fatigue, weaknesses in lower extremities, movement difficulties, visual problems, and poor bowel and bladder control. Concerns about maintaining independence in housing, particularly among persons aging with MS, appear to be substantiated. The individual’s MS presenting symptoms should be taken into consideration when providing home modifications and support in order to provide accessible services to improve the individual’s activities of daily living and mobility. Providing specialized housing and recognizing the importance of removing architectural barriers to facilitate mobility, independence, and safety is important for enhancing quality of life. Adhering to establish standards, guidelines, and benchmarks to ensure best practice in home care services that is age appropriate for the individual is necessary (Klewer, Pohlau, Nippert, Haas, & Kugler, 2001).

The ideal housing arrangement for individuals with disabilities should be in their own homes or living with their families. When living with one’s family or within one’s own home is not possible because of increased care needs, appropriateness of the institutional living situation should be considered and determined. According to the Multiple Sclerosis Society of Canada (MSSA; 2006), although a small minority of young or youth individuals with MS require institutional care, it is vital for their quality of life that their housing and care be appropriate for their age. Too often, they are placed with much older individuals in settings designed for frail and elderly people. Often, this results in a significantly reduced quality of life, which may include depression and other mental problems. A higher percentage of older patients with MS live alone, have lower family incomes, have higher levels of functional disability, and therefore, are more likely to require assistance with activities of daily living (Klewer et al., 2001). Specialized housing needs based on age are higher with older adults with MS when compared to individuals with MS who are of younger age.

3.3 Gender, multiple sclerosis and specialized housing

MS is most common among Caucasians; especially more common among Caucasian women (NMSS, 2010). Women are twice as likely to develop MS as males, but men generally have a worse clinical outcome than women. This worse clinical outcome can be attributed to the fact that women use healthcare services more than men (Eikelenboom, Killestein, Kragt, Uitdehaag, & Polman, 2009). In addition, faster clinical progression is reported in male patients (Khaleeli et al., 2008). However, male and female patients are closely matched for disability and disease duration (Rocca et al., 2010). Many aspects of neuroanatomy and neuro-physiology are affected by gender, resulting in differences in brain function between sexes. Schoonheim and colleagues (2012) found that females with MS showed higher functional reorganization than males with MS, and that male patients performed worse on information processing speed and memory when compared to females. In this same study by Schoonheim et al., female patients showed a cognitive performance similar to that observed in healthy male and female patients. Anxiety, depression and fatigue levels were assessed, and no correlated evidence of gender effect was existed regarding to individuals with MS.

Gender is certainly a central variable in health status, access to and utilization of care, and other services such as specialized housing. The structure and utilization of specializing housing have massive impact on the economic stability of the individuals and their quality of life. The differences based on gender in utilization of specialized housing to some extent determines access to other services such usual sources of care, physician visits, preventive care such as screenings and immunizations, emergency care, hospitalization, pharmaceuticals, and general preventive care (Karoly, Ruehlman, & Lanyon, 2005).

In general, women and men with MS have very similar assessments and symptoms of their health, but women tend to make higher use of physician services (Rosemann et al., 2007). Traditional and stereotyped views of gender (fragile women and rugged men) contribute to health care utilization for a range of problems. For both men and women, traditional gender roles increase health care use in some instances and make it less likely in others. Sometimes these effects seem to be mediated by beliefs about biology, at other times by beliefs about the efficacy of specialized housing care itself, and on other occasions by dynamics of the physician-patient interaction. Men’s reluctance to disclose weakness or vulnerability underlies in part a general avoidance of mentioning emotions that convey distress. The pattern of minimizing unacceptable emotions is sufficiently common among men to support the notion of a normative alexithymia (Courtenay, 2000). This general difficulty in recognizing and describing feelings (or any symptoms of vulnerability or weakness) may partially explain men’s incomplete reporting styles. Other considerations suggest that gender differences in reporting may not emerge directly from gender identity or personal style. Because women as a group make more wellness physician visits, they may simply be more adept and efficient in reporting symptoms. Women may have a better understanding of the importance of providing a full disclosure in the process of diagnosis and treatment (Nicot, 2009).

Young (2003) examined patterns of nursing home admissions for males and females with Alzheimer’s disease. He also examined reasons why women may be less likely to remain in home and family-based care. Results from logistic regression analyses showed that females and males were institutionalized for different reasons. Men were institutionalized primarily for medical and care-giving need factors, while women showed less physical and less cognitive impairment, and their model of placement showed more importance of family care-giving pattern. According to the MSSA (2006) structuring specialized housing for individuals with MS should be sensitive to gender differences and accommodate individuals’ needs regarding to their value or cultural views. For example, some cultures prefer to receive same-sex care provider as a considerable value of modesty and privacy. In addition to that, creating private places for males and females in the housing facilities is necessary to fulfill the individuals’ needs occasional rest and the frequent use of restrooms.

3.4 Race/ethnicity, multiple sclerosisand specialized housing

Studies showed that white individuals (of Northern European origin) are about twice as likely to have MS as African- American individuals. However, it seems like risk for developing MS is not the only racial difference in MS (Chaya & Rena, 2003). Stachowiak (2004) found that African Americans who develop MS have a later age of disease onset than white Americans (age 33.7 versus 31.1 years, respectively) and are more likely to develop ambulatory disabilities than white Americans with MS. African Americans were diagnosed about a year after symptom onset, while the white participants were diagnosed two years after their symptoms started. One theory is that the African American patients were experiencing more severe symptoms, which led to a quicker diagnosis (Plowden, John, Vasquez, & Kimani, 2006).

Research has reported that it appears that African Americans are somewhat more likely to develop mobility problems than white Americans. African Americans with MS have increased virulence, extended recovery times, and an accelerated disease progression (Confavareux et al., 2006). African Americans with MS experience a greater proportion of co-morbidities such as hypertension, seizure disorders, and diabetes (Buchanan & Wang, 2002). African Americans are more likely to experience physical limitations, long-term disability, and require ambulatory assistance earlier than Whites. Significant physical and cognitive limitations in African American population lead to social dysfunction, disparity, and increased vulnerability (Marrie, Cutter, Tyry, Vollmer, & Campagnolo, 2006).

Stachowiak (2004) posited that MS in African Americans progressed from relapsing-remitting MS to secondary progressive MS about three years more quickly than whites. There is evidence that African Americans with MS have a higher chance of becoming dependent on a wheelchair, however, a deeper analysis shows that part of the reason for this is because African Americans in the study were on average 2.5 years older at disease onset, which predicts more disability than the white participants. The median time until wheelchair dependency, was eight years shorter in African Americans, as it happened 30 years after onset of MS in African Americans compared to 38 years after disease onset in whites. In addition to increased physical risks, African Americans with MS experience social risks as poverty and mistrust of the health care system and therefore have developed decreased health-seeking behaviors (Hammond, 2010). African Americans are less likely to have adequate health insurance to seek proper healthcare (Plowden, 2006). The lack of adequate health insurance may account for the presence of multiple health conditions among African Americans with MS. Early onset of MS, along with progressive physical and cognitive impairment, and lower chances of getting treated, altogether limit potential employment opportunities and access to human and social capital.

3.5 Income/employment, multiple sclerosisand specialized housing

Although Green, Todd, and Pevalin (2007) stated that most individuals with MS are in a higher social class and have higher levels of education than people in the general population, MS causes neurological changes that typically interfere with activities of daily living and may impact a number of life domains (Rudick, Miller, Claugh, Gragg, & Farmer, 1992). For example the progressive nature of MS can prevent an individual from participating in employment and hence limit the individual’s income. The social and economic consequences of MS can therefore (Mohr, Dick, & Russo, 1999) lead to a decline in standards of living (Hakim, Bakheit, & Bryant, 2000) including limited access to specialized housing.

People with MS are significantly less likely to be employed than are those in general population and are significantly more likely to have a below-average household income (Green et al., 2007). Although people with MS may have higher level of education the disabling impact of the disease and the cost of healthcare may mean that the individual is not able to work and have higher medical needs leading to below-average household income. Approximately 4 out of 10 people with MS changed jobs because of the disease. Illness related issues forced another 4 out of 10 to leave or be dismissed from their jobs. The length of the working days was also affected. Individuals with no limitations from their MS worked an average of double hours per week than those who use wheelchairs (Baum & Rothschild, 1981). Hester and Decelles (1985) explained that MS condition constitute more than one third of the progressive neurological diseases that lead to unemployment. Catanzaro and Weinert (1992) found in their study that 39% of 177 men and 19% of 427 women with MS retired because of their disability. Catanzaro and Weinert also found that income was inadequate to pay for medical expenses or to meet basic living expenses such as food, housing, and utilities. The impact of MS on employment of the individual invariably has a negative impact on the household standard of living. Green, Todd, and Pevalin, (2007) stated that full-time employment is not possible for individuals with MS due to fatigue caused by this disease. MS can also have an impact on the employment of others in their household as family members may give up working in order to take care of the person with MS (Catanzaro & Weinert, 1992).

Access to health insurance is another concern that can significantly affect financial life for individuals with MS. On one side, individuals with MS may face considerable insecurities when they become unable to work and lack the health insurance, disability insurance, and life insurance that are typically offered through employers (Rossler et al., 2003). Lucchetti with other researchers (2009) investigated the relationship between socioeconomic (SES) and health status in the context of an observational multicenter study of elderly hospitalized patients found that individuals with MS reported considerable difficulty paying for health care, while about 27% of 938 persons put off or postponed seeking needed health care because of costs, and 22% delayed filling prescriptions, skipped medication doses, or split pills because of costs.

Nearly 80% of people with MS are eventually unable to work full-time because of the severity and unpredictability of their symptoms. Not only is MS associated with underemployment, but also costs for equipment and services are substantial, and reimbursement typically does not cover the full expenses. Limited housing and care choices as well as reduced income may result that individuals with MS having to move out of their homes to care settings that are totally inappropriate.

Specialized housing representatives should pay full attention to the value of employment among individuals with MS. Society places a high value on work. People outside the workforce because of disability may feel hurt and inferior (Pain, Dunn, Anderson, Darrah, & Kratochvil, 1998). Employment is a major prerequisite to economic self-sufficiency and quality of life. The ability to work often differentiate the able bodied and the disabled. It is well known that MS affects the person’s ability to remain gainfully employed. Specialized housing should guarantee an access for their residents with MS to attain employment goals by providing an access to rehabilitation vocational services, accessible transportation to and from work, and peaceful atmosphere to complete work requirements inside the facility site. Work performance to be impeded by physical restrictions, person-environment interactions, and disease related symptoms. Here, assistive devices, human support, personal attributes, health promotion behaviors, and person-environment adjustments enhanced the ability to perform work related tasks (Gulick, 1997).

3.6 Social life, multiple sclerosis and specialized housing

MS is not only a medical phenomenon, but can be seen as a social phenomenon that impacts more than the individual. Social and leisure activities may be curtailed; curtailment is defined in the literature as shrinkage of their social and economic world (Aronson, 1997). This process of shrinkage is often accompanied by fundamental questioning of identity such as the feeling of losing the athletic or strong body. Alongside restricted life opportunity is the increased dependency on others, particularly on those with whom individuals with MS have close relationships such as partners and other family members (Green & Todd, 2008). The stress of care-giving can be considerable for a partner, and higher rates of marital separation and divorce have been reported among individuals with MS (De Andres, Guillem, Rodriguez-Mahou, & Lopez Longo, 2001). However, a recent study comparing people with MS to the general population found that apparent differences in marital status between the two groups were non-significant (Green, Todd, & Pevalin, 2007).

Nonetheless, the evidence for disruption of sexual relationships among individuals with MS is compelling. More than 70% of all women and 90% of all men with MS report some change in their sexual relationships such as the occurrence of sexual dysfunctions (Schapiro, 1998), although a deepening of intimate relationships as a result of MS has also been reported. Mohr et al. (1999) explained this change in the relationship is occurred to the extra responsibilities taken on by partners to support the partner with MS can take their toll on the emotional or physical health of partners and place a strain on the relationship.

Green and Todd (2008) found negative impacts on children whose parents had MS. The restricted employment opportunities and lower standards of living for adults in the household are largely mirrored in the impact of MS upon children’s education, as there is less financial support for their children’s school and university years, and less money for luxuries such as holiday spending. Ms can also have an impact on children’s psychosocial relationship with the parent with MS, whereby they feel responsible for being asked to be care providers at times.

Regarding social life and leisure activities, individuals with MS described logistical problems that limit their ability to participate in activities outside home (Catanzaro & Weinert, 1992). Some issues related to this limitation are the lack of handicapped accessible toilets or wheelchair access. In some cases, restrictions are too great to be overcome, and people stop going out (Green & Todd, 2008). Attitudes of others toward individuals with MS are also working as a barrier to having a fulfilling social life.

Social support has a significant contribution to the quality of life aspect for individuals with MS. People with MS who are perceived as having more social support reported a higher level of mental health and more social support was found to contribute to better mental health (Schwartz & Frohner, 2005). Woodend, Nair, and Tang (1997) found greater spousal support to be associated with lower emotional distress. Miller (1997) indicated that people with MS who participated in supportive interactions had more of a sense of purpose to their lives and experienced less depression. Foote and colleagues (1990) found that patients with a higher level of hope perceived greater social support and suggested that to have practical implications for social workers to work with people with MS who have a higher risk of suffering from a lower quality of life and therefore need more social worker’s attention. This group includes more recently diagnosed patients such as people with young children at home who report more cognitive impairment, and who have a low level of social support. Workshops for newly diagnosed people with MS conducted by social workers can be useful for finding resources for social support.

When a family member is diagnosed with MS, participating in some type of counseling program is often of benefit to everyone involved. Individuals may be affected in different ways, both physically and emotionally. Seeking professional assistance helps to ensure that MS does not disrupt one’s family and happiness. Developing a coordinated system of social supports including accessible transportation is an important aspect to be considered when planning for housing for individuals with MS. The individuals’ well being is inextricably linked with that of their caregivers, whose need should also berecognized.

While it is rewarding to provide care to life partner, it can still be unrelenting, exhausting commitment, and too often is unrecognized or unsupported. As mentioned previously, a number of studies have found the stress of care giving impacts the caregiver’s own health which adds additional costs to the family expenses. Caregivers here need to be supported by a strong and integrated network of community-based services and programs. Facilitating services by providing psychoeducational groups and social supports group is an excellent approach may be utilized from in the specialized housing for individuals with MS. Bishop and Harley (2009) explained the importance of this kind of group to educate and facilitate the growth and changes regarding the nature of their illnesses. Also, the social support groups enable participants with MS to receive social support from peers in a forum that fosters the sharing of ideas, information, concerns, and problem-solving methods.

4.1 Housing-related legislation

Title VIII of the Civil Rights Act of 1968 as amended, prohibits discrimination in the sale, rental and financing of dwellings, and in other housing-related transactions, based on race, color, national origin, religion, sex, familial status, and handicap (United States Department of Housing and Urban Development, 2008). The Fair Housing Act defines housing discrimination against persons with disabilities as failure to design and build new multi-family dwellings so they are accessible and usable by people with disabilities with all ethnicity. The Act requires newly constructed multi-family dwellings with four units or more to have several features, including: an accessible entrance on an accessible route, accessible common and public use areas, sufficient door widths for wheelchairs, accessible placement of light switches, electrical outlets, and thermostats, reinforced bathroom walls for installation of grab bars, and others (US Department of Housing and Urban Development, 2008). Despite the Fair Housing Act, it is important to advocate for ethnic minorities with MS to gain access to specialized housing resources. Ethnic minorities may have low economic power to own their own homes, and may lack resources for renting and advocacy. There is evidence that ethnic minority individuals with MS do not have access to specialized housing when compared to their Caucasian counterparts. Discrimination may play roles in lack of access of specialized housing for people from different ethnic groups (National Academies of Science, 2004).