critical review essay

Journal of Rehabilitation, Volume 79, Number 4 15

Journal of Rehabilitation 2013, Volume 79, No. 4, 15-22

Specialized Housing Policies, Resources, and Services for Americans with Multiple Sclerosis:

Priorities for a National Agenda Kathy Sheppard-Jones Phillip D. Rumrill University of Kentucky Kent State University

Malachy Bishop Brittany Waletich University of Kentucky ' University of Kentucky

Benson Kinyanjui Veronica Umeasiegbu University of Kentucky Southern University

Richard T. Roessler Rehabilitation Consultant, Fayetteville, Arkansas

This article presents a comprehensive set of recommendations for réhabilitation profes- sionals concerning specialized housing policies, resources, and services for people with multiple sclerosis (MS). Based on information about the specialized housing needs and barriers of adults with MS collected through a representative national survey, a set of rec- ommendations for rehabilitation professionals was developed. These recommendations were then reviewed and prioritized using the Delphi method, by a group of specialized housing experts, low-income housing services consultants, housing developers, transi- tional housing experts, and family members of adults with MS. The resulting recommen- dations are presented along with supporting data from the national survey and relevant information from the research literature. Together the recommendations represent a com- prehensive national agenda for addressing the specialized housing needs of people with MS and other conditions that may impact mobility and functional capacity.

H ousing and community living issues are a significant con- ty, placing them at risk for falls, injuries, and a restricted lifestyle,

cem for many people with Multiple Sclerosis (MS). Asaftirtherconsequenceofdisability status, limited mobility, and Characterized by a range of symptoms that may directly decreased fmancial resources, people with MS may face discrim-

or indirectly affect mobility, personal independence, community ination and misinformation in seeking accessible or specialized participation, employment, and fmancial status, MS has the poten- housing, tial to affect the housing situation of persons with MS through a variety of avenues. MS is a chronic immune-mediated disease of The term 'specialized housing' is defmed as housing that is the central nervous system that affects over 400,000 people in the designed to be, or has been made to be accessible, including United States, or approximately 1 in 750 Americans at any one needed supports. Specialized housing may include the modifica- time (Fraser, Kraft, Ehde, & Johnson, 2006; National Multiple tionandadaptationofanexistingresidence(suchas with the addi- Sclerosis Society [NMSS], 2012). The clinical course of MS is tion of ramps or grab bars or similar features), housing that is characterized by episodes of neurological symptoms frequently designed and built to be accessible, assisted or supported living, followed by permanent neurological deficits, increasing function- nursing care, and a variety of other community living options, al limitations, and decreased mobility (Buchanan, Wang, Martin, Although housing resources for, and housing research about per- Ju, 2006). As a result, many individuals with MS reside in hous- sons with disabilities in the US are well established, the special- ing with architectural barriers to mobility, independence, and safe- ized housing needs and experiences of people with MS have

received very little research attention. Information about the hous- Kathy Sheppard-Jones, Human Development Institute, University" ing needs of persons with MS has been based primarily on anec- of Kentucky, Lexington, KY, 40513. dotal evidence, and data on this subject have been extremely lim-

ited. Email: [email protected]

16 Journal of Rehabilitation, Volume 79, Number 4

In order to increase the limited understanding of the special- ized 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 bar- riers 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 spe- cialized 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 con- cern 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 con- cerns 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 hav- ing to go to a nursing home. For younger adults, independence and autonomy at home and in the community are an important component of accessing employment, establishing and maintain- ing social and family relationships, and participating in communi- ty activities. Being restricted in ones home, or entering nursing care, can thus represent a significant erosion of the quality of life.

Key housing-related issues for Americans with MS include the limited availability of specialized or accessible housing, hous- ing discrimination, and limited access to residential modifica- tions. While the Americans with Disabilities Act (ADA) addressed architectural barriers, with the goal of increasing the participation of people with disabilities in employment and com- munity activities, as well as ensuring accessibility to commercial real estate, it did not address accessibility in private housing. Consequently, more than 20 years after that landmark legislation, the lack of sufficient accessible housing, particularly in the private sector, continues to be a stark reality.

With the exception of houses designed and built specifically for persons with a disability, the vast majority of new homes are constructed without consideration for people with disabilities or attention to the broader principles of universal design. According to Smith, Rayer, and Smith (2008) more than 90% of the housing units in the US are inaccessible to people with disabilities, and the majority of newly built single-family residences either have steps

at every entrance or narrow interior doorways, thus precluding access to persons using mobility devices such as wheelchairs, scooters, or walkers.

The lack of affordable accessible housing and adapted trans- portation is one of the greatest problems facing people with dis- abilities in the low-to-moderate income bracket, which is the eco- nomic reality for many people with MS (Smith et al., 2008). Analyses by the US Department of Housing and Urban Development (HUD) over the past decade have consistently iden- tified that the demand for affordable housing among non-elderly people with disabilities outpaces supply (Locke, Nolden, Michlin, Winkel, & Elwood, 2000; Steffen et al., 2011).

For those people with MS who want to maintain their current housing in the face of experienced or expected functional limita- tions, renovation or modification of the existing home may be an option. There are many informational resources and funding assis- tance programs available at the national, regional, state, and local level for individuals with disabilities, as well as a growing range of inexpensive assistive technologies and housing modification options available. Unfortunately, many Americans with MS are unaware of these oaptions, fail to recognize the need for or ben- efit of housing modifications, or lack of the economic resources necessary to pay for these modifications (Bishop & Sheppard- Jones, 2013). According to the National Center for Health Statistics, 75% of home modifications are paid for by consumers alone (Tabbarah, Silverstein, & Seeman, 2000). Home modifica- tions may be expensive, and persons with lower incomes, which statistically includes most people with disabilities, are less likely to live in dwellings with modifications or adaptive features (Struyk, 1987). Further, many people with disabilities, including a majority of elderly people with disabilities, live in older homes whose architectural design or structural integrity may not support modification or justify the high expenditure associated with the process.

Discrimination in housing has not been evaluated in the spe- cific context of persons with MS, however, housing discrimina- tion against persons with disabilities has consistently been found to exist in the US despite national and state laws designed to elim- inate discrimination (Turner, Herbig, Kaye, Fenderson, & Levy, 2005). In a study with relevance to many persons with MS, Turner et al. evaluated the experiences of persons who use wheelchairs seeking rental housing in large metropolitan areas. The findings suggested that when people using wheelchairs visit rental proper- ties they are systematically told about and shown fewer units than comparable homeseekers without a disability. In addition, persons using wheelchairs receive less information about available units and less information about the application process than persons without disabilities. Almost one in six rental housing providers who indicated that they had units available for the wheelchair user refiased to allow for reasonable unit modification. Almost one in five of those who had on-site parking refused to make the reason- able accommodation of providing a designated accessible parking space (Turner et al., 2005).

Journal of Rehabilitation, Volume 79, Number 4 17

The combined effect of the scarcity of affordable specialized housing, the cost and other barriers to modifying ones residence, and housing discrimination is that many individuals with MS reside in housing that is inaccessible, unsafe, and that restricts their ability to fully engage in their communities. The results of the recent national survey described above suggest that almost 20% of Americans with MS are limited in their homes because their residence does not meet their current accessibility needs; over 25% have been limited in making needed renovations or changes to make their homes safer because of finances; and over 10% reported that they have experienced housing discrimination (Bishop & Sheppard-Jones, 2013). There is a clear need for an agenda to begin to address these barriers through policy, profes- sional awareness, consumer education, and resource development. The remainder of this article describes the process of identifying and prioritizing recommendations for such action.

Methods The process of identifying and prioritizing the specialized

housing policies and services most important to people with MS involved the following steps. First, recommendations were gener- ated and refined by the authors through a comprehensive review and analysis of data provided by 5,082 participants in a survey of American adults with MS. The resulting recommendations were then reviewed and prioritized by an expert review panel using the Delphi method.

Generation of Specialized Housing Recommendations Information about the housing needs and barriers of adults

with MS was gathered as part of a national survey involving the use of selected NMSS Chapter databases and the North American Research Committee on Multiple Sclerosis (NARCOMS) registry database. The survey methodology was designed to recruit over 4,000 adults with MS for a large national sample that could ade- quately represent the housing concerns of US adults with MS. Participants were identified through a combination of random and random cluster sampling that yielded a sample of 5,082 adults with MS that was subsequently established to be representative of the US population of adults with MS with regard to geographic, gender, age, racial/ethnic, income, educational, and living situa- tion characteristics (Bishop et al., n.d.). The majority of the sam- ple was recruited through the NARCOMS Patient Registry, a long-term national MS registry populated through voluntary enroUee participation. This component of the sample included 4,467 participants, out of the 15,000 active registrants contacted, providing a response rate of 30.4%. Participants were also recruit- ed through the National MS Society chapter mailing lists in sev- eral Southeastern and Midwestern states (some of which had mail- ing list members in multiple states in the region). This NMSS sample included 615 participants, representing a 32.6% response rate.

The survey questionnaire was developed with input fi-om people with MS, professionals with the NMSS, and specialists in disability and housing. Topics covered included demographic data, illness data, residential information, functional status, and experiences with specialized housing and use of specialized hous-

ing resources. The questionnaire elicited quantitative and qualita- tive data. The details of the sampling, recruitment, questionnaire, and data analysis for this survey are provided elsewhere (Bishop et al., n.d.; Roessler, et al., n.d.).

Taking in aggregate the results of the analyses from the NAR- COMS/NMSS specialized housing data set, the research team developed a list of 22 specialized housing priorities, based on a comprehensive review and analysis of both the qualitative (Roessler et al., n.d.) and quantitative (Bishop et al., n.d.; Bishop & Sheppard-Jones, 2013) results of the national survey. These rec- ommendations, therefore, emerged from the participants' experi- ences.

Delphi Analysis The present investigation involved application of the Delphi

method to identify and prioritize issues and recommendations. The Delphi method was developed in the 1950s as a systematic approach to gathering and organizing expert opinions about a complex issue or problem. The method has since been used in a wide variety of research contexts, including technology, educa- tion, the social sciences, social policy, and public health for plan- ning, cost-benefit analysis, and forecasting (Dawson & Brucker, 2001; Linstone & Turoff, 1975; Vázquez-Ramos, Leahy, & Estrada Hernández, 2007). The Delphi method is designed to elic- it the perceptions or judgments of experts knowledgeable in a spe- cialized area, and then refine these opinions through subsequent reviews of the available information, with the goal of an eventual convergence or consensus of opinion (Boberg & Morris-Khoo, 1992).

The Delphi method was designed specifically to establish group consensus among geographically dispersed participants in an economical and efficient manner. Each of the panelists is given an opportunity to reexamine and independently judge aspects of the studied phenomenon as presented and shared by other mem- bers of the group. Features of the procedure include anonymity, controlled feedback (i.e., the procedure of conducting several rounds of questionnaires between which summaries of the results from the previous rounds are communicated back to the partici- pants), and statistical group response (Dalkey et al., 1972).

Although there are many variations of the Delphi method (Boberg & Morris-Khoo, 1992), the process is generally com- prised of several steps, including the recruitment of a panel of experts in a particular field; repeated questioning of each group member through the use of sequential questionnaires; the prepa- ration of a statistical summary after each round, which is devel- oped as feedback and presented to the panelists with the next round of questions so that the respondents may evaluate and revise their opinions through awareness of others' responses. The statistical analyses generally include some combination of the mean, median, and mode of the panelists' answers and a measure of dispersion (e.g., standard deviation) (Vázquez-Ramos et al., 2007).

18 Journal of Rehabilitation, Volume 79, Number 4

Participants For the purpose of the present analysis, the authors identified

a group of 15 potential panelists for membership in the Delphi group, of whom ] 2 (86%) agreed to participate and 75% of whom participated in all of the rounds. These professionals were identi- fied through professional reputation, literature searches, and pro- fessional recommendations as experts in various aspects of hous- ing, specialized or transitional housing, and/or multiple sclerosis. The panelists were providing services in 13 states (some panelists provided services in multiple adjoining states) located in the Southeastern, Midwestern, Northeastern, and Western regions of the US. The panel included professionals from National Multiple Sclerosis Society Chapters, state housing agency specialized housing experts, consultants on low-income housing services, housing developers, transitional housing experts, and family members of adults with MS.

Procedures Tn the first round of the Delphi process, this list of priorities

was sent to the panelists along with a summary of the methodolo- gy and results of the national survey, and instructions about com- pleting the survey. The panelists were asked to review the results of the national survey and the list of identified priorities and then rate the importance of each using a 7-point, flilly anchored rating scale ranging from 1 (Top priority) to 7 (Not a priority). The pan- elists were also asked to comment on the priorities, and then to suggest and also rate any additional priorities that they identified based on their review of the findings.

Upon receipt of the completed questionnaires, the research team computed descriptive statistics for each priority and ana- lyzed the comments and suggestions for additional priorities. In the subsequent rounds, the panelists were reminded of their prior rating, and provided with the panel's mean and modal ratings and the standard deviation for each item, along with a brief explana- tion of these statistics.

After three rounds there appeared to be consensus and con- vergence on 12 of the 22 priorities, predetermined to be estab- lished for items that had a mean rating of 3 (high priority) or high- er across each round. Further, panelists' comments suggested that there was conceptual overlap or similarity between some of the lower-rated items and those rated as top priorities, and recom- mendations that were consistently noted by the panelists as essen- tially similar were eliminated. As a result, the research team iden- tified that there was consensus on a set of 12 priorities, and elect- ed to conclude the study after three rounds.

Results and Discussion In order to organize and most effectively communicate the

recommendations, the research team sorted the recommendations into two categories reflecting their content: (1) Information Development recommendations, reflecting areas in which people with MS may benefit from more information on certain aspects of specialized or accessible housing, and more effective delivery mechanisms, and (2) Advocacy or Policy recommendations, in which policy development or broader advocacy efforts may be

required. The recommendations are presented below in order of their rankings (i.e., those ranked most important are listed first). These results are presented in a blended Results/Discussion sec- tion, a format that permits discussion of the details and related findings associated with the specific recommendations, and which Bellini and Rumrill (2009) suggested is common in qualitative rehabilitation research.

Information Development Recommendations The first two informational recommendations addressed

information about accessing and financing accessible housing, and are discussed together. They were:

Recommendation 1. Develop and make available more information about accessible housing opportunities, and work to better understand how best to get information about accessible housing to people with MS. Make sure that information and refer- ral sources for accessible housing and independent living services are widely publicized and available

Recommendation 2. Develop or make available more infor- mation about financial resources for home modifications.

These recommendations speak to one of the overriding find- ings in the survey, the lack of knowledge among consumers about specialized housing resources and options. The survey also iden- tified a significant need among Americans with MS for increased information about the financial resources available for making residences more safe and accessible. The US Supreme Court's 1999 Olmstead Decision has lead to a shift in federal and state spending from facility-based to community-based long-term care. In the wake of this decision the options for financing specialized housing, and for maintaining independence and safety through housing modification, have increased significantly. In the past decade, significant developments have been made in home modi- fication and assistive technology in such fields as occupational therapy, rehabilitation engineering, and assistive technology. Further, there is a growing number of informational resources and legislative, financial, and structural supports available to individ- uals with disabilities related to specialized housing, assistive tech- nology, housing modification, universal design, and affordable housing and funding assistance programs. Research indicates, however, that there remains a lack of awareness about available resources among people with MS and rehabilitation professionals (Bishop & Sheppard-Jones, 2013; Bishop et al., n.d.; O'Day, 1998; Putnam & Tang, 2008). In the national survey conducted by the authors, for example, less than half of the participants were familiar with Independent Living Centers (48.4%) and less than 13% knew whether their state had programs that provide resources to people with disabilities for accessible renovation or other services needed to live independently, such as personal attendants.

The second component of the first recommendation address- es the importance of identifying the most effective means of dis- seminating specialized housing information so that it reaches those who can use it. Recent research suggests that people with MS seek information through a range of media (e.g., the Internet,

Journal of Rehabilitation, Volume 79, Number 4 19

books, pamphlets, support groups. National MS Sociefy, etc.), and there is considerable variabilify in the preferred route of informa- tion access based on individual demographic and accessibilify variables (Bishop, Frain, Espinosa, & Stenhoff, 2009). Ultimately, if information is not available in a format and medium that can, or will, be accessed, it will not serve its purpose. An important focus in developing this information should be identifying the most effective and comprehensive dissemination mechanisms, includ- ing identifying and targeting those most likely to need the infor- mation. Disseminating this information to health care and MS professionals as well as people with MS, and actively evaluating the reach of dissemination efforts is also important.

Recommendation 3. Develop or make available more infor- mation about financial supports that may be available for residen- tial purchase or renting.

The fact that there is a lack of affordable, accessible housing for people with disabilities has been well established (e.g.. Smith et al., 2008), yet programs and resources exist that can help to address this need. Unfortunately, the results of the survey sug- gested a very low level of awareness of programs and resources that may be helpful with respect to residential purchasing or rent- ing. Most participants were unfamiliar with, or had never heard of programs that provide financial assistance in obtaining housing (e.g., the Public Housing Authority, Tenant-Based Rental Assistance [TBRA] programs that may provide rental subsidies to persons with low incomes or physical disabilities, or US Department of Housing and Urban Development [HUD] benefits such as rent subsidy and home modification allowances). This recommendation addresses the gap that appears to exist between the funding programs and the people who would benefit from them. As addressed in a later recommendation, these programs are frequently available based on eligibilify and income level require- ments, so increasing awareness of these resources would repre- sent only one step in addressing the growing need for affordable aecessible housing.

Recommendation 4. Develop or make available more infor- mation about housing features that utilizes universal design and aging in place principles.

Universal design refers to the principle that manufactured products and the built environment should be designed to be usable by all people, regardless of their experience, knowledge, language skills, and physical abilities (Center for Universal Design, 1997 cited in Rayer et al., 2008). The "aging in place" concept is based on the insight that most individuals prefer to remain in their homes rather than move to nursing homes or other facilities as they grow older (National Council on Disabilify, 2010). Aging in place is enhanced when people have access to appropriate support and services, including home modifications, and to the accessibilify and affordabilify of home care and per- sonal assistance, house maintenance, shopping, and transportation (National Council on Disabilify).

This recommendation suggests the importance of educating people about universal design, and the features of a residence that

promote accessibilify, and highlights the growing awareness of the benefits to persons with MS and other disabilities of housing that is designed, built, and maintained on these principles. Another element inherent in this recommendation suggests the promotion of awareness about considering the accessibilify of a residence from a long-term perspective, and the extent to which a residence will meet ones changing accessibilify needs before purchasing or committing to living in a residence.

Recommendation 5. Develop or make available more infor- mation about legal rights and protections related to disabilify and accessible housing.

Promoting self-advocacy by creating awareness of housing rights is an important component of increasing access to afford- able and accessible housing for persons with disabilities. Participants' awareness about housing laws and rights, and their experience with violations of these, was evaluated in a number of ways in the national survey. Specificaüy, participants were asked to identify their level of understanding of housing-related laws, identify whether they had experieneed discrimination, and pro- vide qualitative responses to open ended questions about their experiences with discrimination. Generally, as is true for the gen- eral public, participants' did not appear to be well informed. For example, less than half (45.7%) of the participants were aware of the legal protections provided by the Fair Housing Act and the Fair Housing Amendments Act, as compared to 72.5% who reported that they were familiar with the protections associated with the Americans with Disabilities Act. Less than a quarter (23.6%) were aware of their state's Commission on Human Rights.

More than 1 in 10 (10.6%) participants reported having expe- rienced discrimination in housing, with the discrimination described as occurring in the context of a variefy of housing-relat- ed environments/activities, including renting housing (5.1%), modifying housing (1.7%), purchasing housing (0.5%), and other settings (2.3%). Many of the participants described experiences in which their requests for housing accommodations or accessible parking were rejected or ignored. This recommendation highlights the need for people with MS to have access to legal information and resources, and for professionals to educate their clients about their legal rights and protections and assist with advocacy.

Recommendation 6. Develop or make available more infor- mation about transportation, including local public transportation systems, mass transit and paratransit, as well as modifications to personal vehicles.

Transportation is a means by which options for accessible housing and communify participation are increased. In the nation- al survey, over half of the participants reported that they did not have aecess to public transportation at their residence (60.6%). While the significant majorify reported that they do not require public transportation to meet their daily needs, 6.2% reported that they do. Further, among those who stated that they required pub- lic transportation to meet their daily needs, 27.2% reported that they do not have access to publie transportation at their residence.

20 Journal of Rehabilitation, Volume 79, Number 4

Extending the findings from the national survey sample to the larger US population of 400,000 people with MS, it may be esti- mated that almost 25,000 Americans with MS rely on public transportation to meet their daily needs, and over 25% of these do not have access to public transportation at their residence. Tn their qualitative responses, many participants suggested that their pub- lic transportation system was neither available nor practical, and many participants living in rural or small communities reported that their community did not have a public transportation system (Roessler et al., n.d.). Although the majority of people in the sur- vey reported that they drive their own car, and that their trans- portation needs are well met, hundreds of participants faced sig- nificant transportation barriers.

Approximately 5% reported that they currently drive cars with modifications (Bishop & Sheppard-Jones, 2013). Many other participants identified that they required vehicle modifications, and described the following vehicle modifications as essential: a power chair or scooter carrier attached to the car, or a vehicle in which these mobility devices will fit; hand controls; a steering wheel handle; a lift for their wheelchair or scooter; or a wheel- chair accessible van.

Recommendation 7. Develop or make available more infor- mation related to the availability of, and resources for personal care or home health supports.

The percentage of participants in the national survey reporting that they rely upon assistance in the home (42.3%) was consistent with recently reported findings based on large US samples (Minden et al., 2004; Minden et al., 2006), as was the fact that the majority of those relying on assistance reported that they rely predominantly on family members. It was further observed that many Americans with MS have difficulty in obtaining needed home assistance. Approximately 20% of those participants who reported that they need, but are not receiving assistance in the home reported that assistance was not available to them, and over 60% reported that assistance was not affordable. The clear implication of this findings is that rehabilitation professionals and advocates should actively evaluate the availability and affordability of housing assistance and residential care services in their local area, advocate for resources where needed, and help increase awareness among persons with MS about affordable assistance options. Underscoring the importance of this recommendation is the additional finding that people who have assistance in the home also reported increased confidence that they would be able to remain independent in the future (Bishop et al., n.d.).

Advocacy or Policy Recommendations Recommendation 1, Work to develop programs to subsidize

investments in home and vehicle modifications.

A major barrier identified by the participants was the cost associated with housing and vehicle modifications. Although over 40% of the participants in the survey reported having previously made a renovation or change to their home to make it more safe or accessible, over one quarter (26.3%) reported that they have

been limited by their finances in making needed renovations to make their homes safer because of finances.

Because many of the programs that may be available to help pay for modifications have eligibility restrictions based on income level, many persons with MS have household incomes that pre- clude them from economic assistance, but do not have sufficient income to pay for renovations themselves. Although receiving services through Independent Living Centers and the state-feder- al vocational rehabilitation program may lead to assistance with vehicle or housing modifications, relatively few people were aware of these programs that do not have income-based eligibili- ty restrictions.

Recommendation 2. Work to increase the availability of safe and affordable housing with recreational facilities.

This policy recommendation addresses both quality of life and health concerns, and was derived from comments by many participants about the fact that, due to mobility restrictions and limited access to the community, they had very restricted opportunities available to them with respect to social, recreational activities, and physical exercise. Further, many participants living in affordable public housing situations suggested that their neighborhoods were "bad" or unsafe. This recommendation also speaks to the broader and previously identified need to increase the number of locations in which affordable accessible housing options for Americans with disabilities are available.

Recommendation 3. Work to ensure more inclusive financial aid programs for people of modest means who are excluded from current benefit programs.

As described above, many people with MS reported that they find themselves in a situation in which they have an annual income too high to permit access to income-based eligibility programs, but not high enough to enable them to afford to make the renovations or changes necessary to increase their residential accessibility. As a consequence, they must either live in a residence in which they are restricted, move from their home to a more accessible residence, or simply face an increased risk for injury and placement in a nursing or long-term care facility. Part of the solution to this problem may be, as recommended above, to increase awareness about programs and resources that are available for assistance and that are not income based. However, attention should also be directed toward addressing this access policy, particularly as this barrier is faced by a large and growing percentage of the population.

Recommendation 4. Develop and provide broad access to an online resource that would enable accessible and affordable housing searches based upon geographic location, types of housing subsidies, and unit types available for people with disabilities.

This recommendation suggests the development of a searchable online database of accessible and affordable housing. Although the development and maintenance of such a resource, even at a local or regional level, would be time and resource

Journal of Rehabilitation, Volume 79, Number 4 21

intensive, the potential benefit of such a resource, which could also serve to disseminate specialized housing resources and information, would be significant and its utility would clearly extend beyond the needs people with MS.

Recommendation 5. Work to increase awareness (e.g., through training for architects and contractors, community advocacy, legislation, etc.) about the need for physically accessible newly constructed homes.

This final recommendation addresses the need for policy, advocacy, and education in the area of inaccessible housing design, particularly in the design and construction of new homes. The relatively low percentage of new homes that are accessible has previously been described, and there has long been a general mismatch between the housing industry and people with disabilities (Bums, 2004; Imrie, 2004; Imrie, 2003). Home builders often believe that universal design modifications are too expensive to incorporate, and designers are not aware of the usefulness of universal design principles and features, or the needs of people with disabilities in general (Bringolf, 2011). There are, however, many strong arguments for incorporating principles of universal design in housing, including several with significant implications for long-term financial savings.

Universal design increases the pool of potential buyers, as it maximizes the usability of a dwelling for a larger proportion of potential residents, including family members across the lifespan, visitors, and caregivers (Evans-Cowley & Nasar, 2007). This may be particularly true as a large proportion of the US population ages, and as the interest in aging in place grows, so too does the need for accessible residences (Baltes, Maas, Wilms, Borchelt & Little, 1999). From a rehabilitation perspective, the concerns with the present situation include both health promotion and the right of people with disabilities to equal access. Physical access is a basic civil right (Rodman & Cooper, 1995), and professional advocacy is critical to informing public attitudes and policies that increase both the mandates for universal design in new construc- tion and the resources for modifying existing construction. From a health perspective, the physical inaccessibility of a home can, in itself, lead to the need for long-term care in a congregate setting, which can be attended with significant cost and a variety of negative health outcomes. Homes that enable one to continue to maintain independence are seen as an important component of physical and psychological health promotion (Iwarsson, Horstmann, & Slaug, 2007). Finally, inaccessible housing is, in the long term, expensive. Each year, $150 billion is spent in the US to renovate existing affordable housing (Listokin & Listokin, 2001).

Conclusion Individually, these recommendations identify and address

significant needs and barriers faced by a large and growing sec- tion of the population and suggest specific actions that rehabilita- tion professionals can take to promote their clients' health and quality of life. The recommendations suggest areas for evaluation and assessment, for providing information and resources, and for

professional advocacy on a broader scale in policy, practice, and raising societal awareness. As a group, these recommendations provide a useñil and comprehensive action agenda for promoting access to specialized housing through practice, policy, and legis- lation from the local to the national level.

Author Note This research was funded through a Health Care Delivery and

Policy Research grant from the National Multiple Sclerosis Society, New York, NY. The authors wish to thank the National Multiple Sclerosis Society and the participating chapters, and the study participants for their support and assistance with this research

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