From the onset of SCI, the rehabilitation services and the resources required for independent living remain two of the key elements for successful community reintegration. This is particularly true for people with spinal cord injury who use more services (particularly related to housing) than other consumers with disabilities such as TBI or Stroke (Fuhrer et al. 1990).
Barriers and Problems Related to SCI and Housing
Multiple studies have researched barriers to securing appropriate housing for people with SCI. Two systematic reviews (Barclay et al. 2014; Dwyer and Mulligan, 2015) identified inaccessibility of housing, transportation and of other natural and built environments as impeding social participation and community reintegration in people with SCI. Pettersson et al. (2015) indicated that mobility issues are related to environmental barriers like: irregular or uneven surfaces, high steps, to mailbox/trash receptacles which are difficult to reach, doors that cannot be fastened in open positions, doors that do not stay open or close too quickly. In a survey of people with SCI in Nepal, Scovil et al. (2012) reported that 80% of participants were unable to enter their homes independently, and 50% had no accessible toilet, access to a water source, or road access to their home.
Barriers for community reintegration also include lack of social support from family and friends, inaccessibility of housing and transportation, feelings of isolation or decreased sense of belonging, not being psychologically prepared for returning home, and lack of personal control over the environment (Dwyer and Mulligan, 2015). The choice of residence is limited by many factors and the limitations are magnified as the severity of disability increases. The findings indicate those with tetraplegia move several times after discharge from rehabilitation. The moves are influenced by factors such as information, money, accessibility, insurance, and personal assistance. Individuals with SCI who eventually end up living with their parents or in an institution consider such living arrangements as their last option (Bergmark et al. 2008). A low FIM score appears to increase the risk to move to a nursing home amongst individuals with SCI after rehabilitation discharge (Gulati et al. 2010). The number of functional limitations was significantly associated with autonomy indoors and outdoors. This implies that the greater number of functional limitations, the greater the restriction in autonomy indoors and outdoors (Petterson et al. 2015).
Some qualitative findings revealed individuals with SCI experienced some difficulties when they returned home. Those difficulties are related to loss of camaraderie, lack of post discharge care and negative experiences with other persons related to being a wheelchair user (Dickson et al. 2011). The qualitative study of Smith and Caddick (2015) also revealed issues related to lack of control, flexibility and restriction of participation in work and leisure as key difficulties identified by people with SCI. Boschen (1988, 1990) found the level of satisfaction with the home is also related to difficulties encountered living in the home, primarily because of environmental barriers.
Despite opportunities to participate in transitional or independent living programs before discharge from rehabilitation, the common finding of this body of work is the move back into the community following SCI seems to be a real test of both the supportiveness of the environment and the resilience and resourcefulness of the individual in determining the success of the reintegration.
The evidence reveals the importance of the continuity of services between rehabilitation and return to the community (Fuhrer et al. 1990). The lack of accessible housing is an important barrier which may have an impact on the community reintegration process as well as on rehabilitation service costs. According to the findings by Kennedy et al. (2010), the transition process is difficult because of the lack of resources, mainly in terms of adaptation, accommodation and equipment. Anzai et al. (2006) found through univariate analyses that 7 factors were significantly associated with discharge to an ECU versus community: age, employment at time of injury, pre-existing medical conditions, social support, pre-injury living situation; and insurance or private funding for equipment. In the same study, multivariate analysis revealed 4 factors significantly related to location of discharge: insurance; private funding for equipment; age; pre injury living situation (Anzai et al. 2006). Urban and rural residents did not differ in terms of costs of acute care and length of stay, but urban residents experienced significantly longer rehabilitation hospitalization stays, despite no differences between residents in terms of the number of hours of physical therapy, occupational therapy or psychological services received (Mazurek et al. 2011).
Facilitators re: Housing After SCI
The research also looked at facilitators to positive housing outcomes in people with SCI. In a systematic review, Dwyer and Mulligan (2015) found that the accessibility of the environment (i.e., housing, community, transport, health professionals, and assistive devices), re-establishing self, support and connections were strong facilitators for community reintegration. In another systematic review, authors found amongst facilitators having adequate personal care assistance, having appropriate social support, having adequate specialized equipment and appropriate occupational therapy input (Barclay et al. 2014).
In this context, community services play an important role, especially in housing and peer support to return to independent living (Fuhrer et al. 1990; Tate and Forchheimer 1998). The quality of the built environment is one of the key determinants of the ability to find housing which meets the needs of people with SCI, which also affects their level of satisfaction with respect to where they reside. Significant predictors of living arrangement outcome were marital status, age at onset, sex (female was associated with greater independence), transportation barriers, medical supervision, and services received. Seven variables explained 63% of the variance in IL outcome; the greatest predictors are marital status; transportation barriers; education level; degree of medical supervision required; economic disincentives; services received; and severity of disability (DeJong et al. 1984).
Freedom of choice related to selecting where they will live constitutes a salient feature of life satisfaction for many. Though people with SCI may have limited options (Boschen 1988; 1990), Anzai et al. (2006) found certain social and personal factors (e.g. age, having insurance or private funding) reduce the risk of moving to a nursing home after discharge from rehabilitation. Those discharged home also had a significant improvement in their FIM score from the onset of rehabilitation to discharge (Gulati et al. 2010). Drawn on a qualitative study, individuals with SCI who described their community in social and relationship terms presented a more positive perspective of the community than those who described it in terms of physical space and access (Kuipers et al. 2011).
Effects of Appropriate Housing and SCI
It is difficult to study the effects of housing in a controlled scientific manger; stable housing is a basic human need, and it would be unethical to inflict homelessness on people to study its negative effects for example. However, observational and qualitative research does illuminate the effects of proper housing somewhat.
Marital status and transportation barriers are the most important predictors related to living arrangement post-SCI (DeJong et al. 1984). Boschen (1996) found the best predictor of residential satisfaction was having the perception of choice of residence; satisfaction with residential placement was correlated with life satisfaction. Moreover, the level of satisfaction was higher among persons with SCI living in their own apartment. In previous work, Boschen (1988) revealed having one’s own apartment was preferred by the individuals with SCI and their choice was determined by the quality of the environment, particularly in terms of accessibility.
Living in an environment considered to be minimally restrictive which enables active participation in daily decisions according to the principles of independent living is more likely to contribute to improved quality of life (DeJong and Hughes 1982). Factors identified as facilitating participation include having adequate personal care assistance, having appropriate social support, having adequate specialized equipment and appropriate occupational therapy input (Barclay et al. 2014). Safety at home is important to people with SCI, particularly related to fire; many participants indicated they would need assistance with this dimension of home safety (Cesar et al. 2002).
According to Tate and Forchheimer (1998) participation in an independent living program (e.g., peer counseling, group support) can provide better knowledge of the resources needed and may lead to better personal control and adjustment upon return to the community, though follow-up results show insignificant impacts (Forchheimer and Tate 2004); more and better research is necessary.
There is qualitative evidence (Barclay et al., 2014) that facilitators to social and community participation include having adequate personal care assistance, appropriate social support and adequate specialized equipment and appropriate occupational therapy input. Barriers include transport, inaccessibility of natural or built environment, and issues with healthcare services and rehab providers.
There is qualitative evidence (Dwyer & Mulligan, 2015) that contextual influences from the environment and personal factors predominated as both facilitators and barriers to community reintegration following spinal cord injury. The accessibility of the environment, re-establishing self, support and connections were strong facilitators for community reintegration.
There is level 5 evidence (Pettersson et al., 2016) that the number of functional limitations that power mobility device users with a spinal cord injury have is significantly associated with autonomy indoors and outdoors.
There is level 5 evidence (Forrest and Gombas 1995) that discharge from hospital was delayed for a significant portion of SCI patients due to lack of accessible housing, which leads to unnecessary increase of cost of care.
There is level 5 evidence (Fuhrer et al. 1990) that ILCs with MRP relationships serve more clients than those without, and that the most frequently serviced individuals are those with SCI who attend for peer counseling, skills training, and discharge planning.
There is level 5 evidence (DeJong and Hughes 1982) that living with a spouse and/or children, living alone, or living with unrelated persons were more desirable arrangements than living with parents and spouse/children together, living with distant family (i.e. grandparents), or living with parents and siblings.
There is level 4 evidence (DeJong et al. 1984) that marital status, transportation barriers, education level, medical supervision requirements, economic disincentives, services received, and severity of disability are predictors of independent living.
There is level 5 evidence (Boschen 1996) that issues of choice and control are important when planning living situations and setting goals with clients because they are directly related to residential and life satisfaction.
There is level 5 evidence (Boschen 1990) that individuals with SCI have lower perceived life satisfaction, locus of control and satisfaction with certain aspects housing than a normative sample.
There is level 5 evidence (Boschen 1988) that accommodation options for a person with a disability are limited. The preferred accommodation is a private house or apartment.
There is level 5 evidence (Anzai et al. 2006) that living with someone prior to SCI, having insurance or private funding for equipment, and being younger decreases the risk of being discharged to an extended care facility following SCI rehabilitation.
There is level 5 evidence (Cesar et al. 2002) that individuals with SCI have a need for assistance with fire safety to increase their perception of home safety.
There is qualitative evidence (Bergmark et al. 2008) that suggests individuals with SCI move multiple times after injury. In most cases they start living with their parents and/or in an institution before moving into their own homes.
There is qualitative evidence that suggest individuals with SCI have difficulties adjusting to life at home (Dickson et al. 2011). Reported difficulties are related to the loss of camaraderie, lack of post-discharge care and negative experiences with other people related to being in a wheelchair.
There is qualitative evidence (Kuipers et al. 2011) that suggest individuals with SCI who described their community in social and relationship terms reflected more positive views about this community compared to those who described their community in terms of physical space and access.