Housing and Attendant Care

Housing

Housing is a primary need for all individuals. The necessity of having a safe home compatible with one’s personal needs increases when an individual is vulnerable. One of the first questions asked when a person has sustained and survived an SCI is where he/she will be able to live. Successful community reintegration is intimately linked to housing within the background of the person’s needs, the attributes of relevant environmental factors, and the preferred choice of living environment of the person with the injury. Until recently, SCI authors generally only discussed the issue of the suitability of a home regarding its physical accessibility and adaptations (Heywood 2004; Forrest and Gombas 1995; McAweeney et al. 1996). Forrest and Gombas (1995) showed that a lack of accessible housing increases a person’s length of stay on the rehabilitation unit, thus increasing the overall cost of healthcare services after SCI.

The choice of living environments for people with SCI is critical because of their increased need for human and environmental support, requiring them to carefully consider who they will live their life with and where. In some cases, individuals with SCI do not have a choice because of the lack of accessible housing inventory. Having a range of choices of housing likely hastens and enhances the transition from rehabilitation to community while improving the personal match to the living environment.

Eighteen non-intervention housing articles and two systematic reviews on housing are presented below.

Author Year; Country
Score
Research Design
Total Sample Size		 Methods Outcome

Barclay et al. 2014; Australia
Systematic Review
Reviewed articles from 2001 to 2013.
N= 23
Level of evidence: Critical Review Form was used to evaluate studies
Type of studies: 5 qualitative, 17 quantitative (cross sectional surveys or questionnaires, no intervention studies), 1 mixed method
AMSTAR= 6

Methods: Literature search for published English quantitative, qualitative and mixed method studies related to evidence on social and community participation following SCI in addition to factors (i.e. personal & environmental) that influence participation.
Databases: OVID MEDLINE, AMED, CINAHL, PLUS, PSYCHINFO
Studies published from 2001 to 2013
  1. Factors identified as facilitating participation include having adequate personal care assistance, having appropriate social support, having adequate specialized equipment and appropriate occupational therapy input.
  2. Barriers identified that impeded participation include inability to access appropriate transportation, inaccessibility of natural and built environments, issues with healthcare services and rehabilitation providers.

Dwyer and Mulligan, 2015; New Zealand
Systematic Review
Reviewed articles since 2000
N=7
Level of evidence: The Mixed Methods Appraisal Tool (MMAT) was used to assess the quality of methodology
Type of study: 5 qualitative, 2 mixed method
AMSTAR= 6

 Methods: Literature search for published English qualitative studies in peer-reviewed journals to determine what individuals with SCI perceive to be the barriers or facilitators to community reintegration.
Databases: Ovid Medline, CINAHL, AMED, Cochrane Database of Systematic Reviews and PEDro
  1. The accessibility of the environment (i.e., housing, community, transport, health professionals, assistive devices), re-establishing self, support and connections were strong facilitators for community reintegration.
  2. Barriers for community reintegration 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.
  3. Contextual influences from environmental and personal factors (as opposed to factors related to body structure or function or activity level) predominated as both facilitators and barriers to community reintegration.

Author Year; Country
Score
Research Design
Total Sample Size		 Methods Outcome

Mazurek et al. 2011; USA
Case-control
Level 3
N=149

 Population: 149 SCI patients (111M 38F); mean age at injury: 36.3 yrs; 113 rural & 36 urban living
Treatment: No treatment.
Purpose was to assess the differences in injury-related factors, rehabilitation services and costs, and rehabilitation outcomes in individuals with SCI in rural areas vs. those in urban areas.
Outcome measures: Demographic and injury-related variables, rehabilitation services received, length of stay (LOS) in acute and rehabilitation settings, and costs.
  1. Urban and rural residents did not differ in terms of costs of acute care and LOS.
  2. Urban residents experienced significantly longer rehabilitation hospitalization stays.
  3. No differences between urban and rural residents in terms of the number of hours of physical therapy, occupational therapy or psychological services received.

Gulati et al. 2010; UK
Case-control
Level 3
N=30

 Population: 30 of 39 surviving traumatic SCI patients; mean age 73 yrs (range 65-88); 24 incomplete; 21 cervical, 3 thoracic, 6 lumbar level
Treatment: No treatment. The purpose of this study was to describe functional outcome and discharge destination of elderly patients with traumatic SCI.
Outcome measures: Data from the National Injuries Unit database (2000-2005) included the following variables: demographics, cause of injury, level of injury, type of cord injury, associated injuries, discharge outcome and hospital stay, American Spinal Injury Association impairment scale, Functional Independence Measure Score (FIM).
  1. 11 patients (37%), all with incomplete injuries, were discharged home and had significantly higher FIM scores at the onset and discharge from rehabilitation compared to those discharged to a nursing home or other hospital.
  2. Those discharged home also had a significant improvement in their FIM score from the onset of rehabilitation to discharge.

DeJong et al. 1984; USA
Case Series
Level 4
N=75

 Population: 75 individuals (63M 12F); 71% <35 years old; 51 had SCI ≥3 years,
Treatment: No treatment. The purpose was to determine factors that predict the ability of persons with SCI to live independently following discharge from rehabilitation.
Outcome Measures: Overall independent living (IL), socio-demographics, disability (Barthel Index and 4 other factors), environmental aspects (attendant care, housing, transportation, work disincentives, services received), and interface variables bridging functional limitations and environmental barriers (unmet equipment needs).
  1. 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.
  2. 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.

Pettersson et al. 2015; Sweden
Cross-sectional
Level 5
N=48

 Population: 48 power mobility device (PMD) users with median age of 64 years, 33 males, 15 females, 26 participants with paraplegia, 22 participants with tetraplegia. Participants have traumatic or non-traumatic SCI for at least 10 years. 31 participants used their PMD only outdoors, 17 used their PMD both indoors and outdoors.
Treatment: No treatment. The purpose was to describe environmental barriers, accessibility problems, and PMD users’ autonomy indoors and outdoors.
Outcome Measures: Environmental barriers were assessed using the environmental component of the Housing Enabler assessment. To analyze accessibility, a matrix, that juxtaposed the profile of each participant’s functional limitation with the environmental barriers found present in the dwelling, was used. Autonomy was assessed by Impact on Participation & Autonomy (IPA) instrument.
  1. The only variable significantly related to being either in the ‘less restriction’ or ‘more restriction’ groups was median number of years living with SCI (i.e., the more years living with SCI, the less restriction in autonomy indoors).
  2. The functional limitations of reduced fine motor skills and poor balance were present in nearly all who used a PMD both indoors and outdoors but were significantly lower among those who used a PMD outdoors only.
  3. 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.
  4. The 3 environmental barriers that generated the most accessibility problems in exterior surroundings and at entrances were the same for PMD users both indoors and outdoors. The barriers included: mailbox/trash receptacle difficult to reach, irregular or uneven surfaces, high steps, doors that cannot be fasted in open position, doors that do not stay open or close quickly.
  5. Location of PMD use was not significantly associated with autonomy either indoors or outdoors.

Scovil et al. 2012; Nepal
Cross-sectional/Qualitative
Level 5
N=37

 opulation: 24 people (14M 10F)

mean age: 33 yrs (range 14-59); YPI:

2 days to 14 yrs; injury level: lumbar: 9; thoracic: 11; cervical: 4. Participants were visited 11-27 months post discharge. 84% had been injured through falling, 15 were wheelchair users, 4 required walking aids and 5 could walk unassisted.
Treatment: No treatment. The purpose was to evaluate the ongoing health and community reintegration of patients with SCI.
Outcome Measures: Semi-structured interviews, the Modified Barthel Index, and the Participation Scale were used to evaluate health, independence in daily living, community participation and barriers due to socioeconomic issues, housing, accessibility, and availability and use of mobility aids.
  1. Inappropriate wheelchairs, inadequate housing and rugged terrain restricted accessibility.
  2. 80% of wheelchair users could not enter their homes independently.
  3. Half of those interviewed had no accessible toilet, access to a water source, or road access to their home.
  4. 19 owned their own home, 5 rented.

Kennedy et al. 2010; UK
Cross-sectional
Level 5
N=80

 Population: 80 people with SCI; ratio of 2:1 (men: women); mean age = 50.37 yrs (range 18–81 yrs); 3–18 months post discharge; 8 complete and 23 incomplete tetraplegia; 17 complete and 23 incomplete paraplegia; 9 unknown.
Treatment: No treatment. The purpose was to assess the needs and perceived environmental barriers of SCI patients living in the community 3–18 months after discharge.
Outcome Measures: A postal survey using a number of standardized measures and open ended comments.
  1. The majority of participants (67.9%) felt there were issues after discharge that made transition difficult, mostly due to accommodation and adaptations (29%).
  2. 49% of respondents experienced a delay in acquiring the necessary adaptations.
  3. The lack of resources making transition most difficult were, in order, adaptations (35%), equipment (27%), and poor access (19%).

Anzai et al. 2006; Canada
Observational
Level 5
N=52

 Population: 52 participants (40M 12F); mean age 45.3; 33 participants had a C4 lesion; 31 were categorized as AIS – A.
Treatment: No treatment. The purpose of the study was to identify and describe the factors associated with whether individuals with high lesion SCI were discharged from rehabilitation to an extended care unit (ECU) versus other settings, including private homes, group homes, and acute care.
Outcome measures: Location to where participants were discharged; individual characteristics, health-related characteristics; personal context, hospitalization factors; and health resources.
  1. 21 participants were discharged to an ECU (12 as a permanent destination, 9 as interim placement). Of the 9, 3 participants eventually returned to the community.
  2. 25 participants were discharged to a home; 2 to a group home; 1 to a shared care apartment; and 3 to acute care.
  3. Univariate analyses revealed 7 factors 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.
  4. Multivariate analysis revealed 4 factors significantly related to location of discharge: insurance; private funding for equipment; age; pre injury living situation.

Cesar et al. 2002; USA
Observational
Level 5
N=69

 Population: 69 individuals (55M 14F); ≤5 years post injury; 31 paraplegia and 38 with tetraplegia; living in the community.
Treatment: No treatment. Purpose was to assess the living situation of recently injured individuals, to identify any safety concerns, and to address potential solutions to eliminate the concerns.
Outcome Measures: Safety in the home Environment.
  1. Most perceived themselves relatively safe in their environment (safe from crime in home, safe going out in neighborhood, feel safer when go out with friends than alone).
  2. 45 felt prepared for a fire in their home; 24 expressed a need for assistance with fire safety concerns.
  3. No statistical difference in overall perceptions of safety between those with paraplegia and those with tetraplegia.

Boschen 1996; Canada
Observational
Level 5
N=82

 Population: 82 individuals (66M 16F) with traumatic SCI (age range = 18 – 35); ≥1 year post- injury; 46 participants with tetraplegia
Treatment: No treatment. The purpose of this study was to evaluate the correlates of life satisfaction, residential satisfaction, and locus of control among individuals with SCI.
Outcome Measures: self-administered questionnaire (Living with Spinal Cord Injury): residential choices; perceived activities choice scale, activities choice congruence scale; and Locus of Control Scale.
  1. 57 lived in private houses or apartments (often with parents), 8 in apartment projects with shared attendant services, and 4 in institutions.
  2. >50% had to move to new residence due to injury.
  3. Half of the respondents reported their current accommodations were determined by them having a physical disability.
  4. The greatest single predictor of residential satisfaction is perceived current residential choice.
  5. Residential satisfaction was correlated to life satisfaction; one’s living accommodations are central to one’s life situation.

Forrest & Gombas 1995; USA
Observational
Level 5
N=105

 Population: 105 acute SCI participants (80M 25F); mean age 42 yrs (range 17-83); 63 with paraplegia and 42 tetraplegia
Treatment: No treatment. The purpose of study was to determine the frequency with which lack of accessible housing delays the discharge of an SCI subject, and the related costs of the delay.
Outcome Measures: Frequency and length of delay of discharge due to lack of accessible housing; cost of the delay.
  1. Of the 105 participants included in the study, 11 stayed on the rehabilitation unit between 6-210 days longer than was medically necessary because of lack of accessible housing; the average delay in discharge was 60 days.
  2. The average cost of a 60-day stay at the institution was $29,280, compared to $1,620 at a transitional living unit, which translates to an average saving of $27,660 per patient.

Boschen 1990; Canada
Observational
Level 5
N=82

 Population: 82 individuals with traumatic SCI (aged 18-35); mostly male with tetraplegia; age-matched data from the Institute of Behavioural Research Canadian Quality of Life data-bank (1981).
Treatment: No treatment. The purpose of the study was to compare life satisfaction, housing satisfaction, and locus of control between individuals with SCI and non-disabled individuals.
Outcome Measures: Living with a Spinal Cord Injury questionnaire composed of 29 items from the Canadian Quality of Life Survey and 60 items from Locus of Control Scale.
  1. Life satisfaction and locus of control were significantly lower for individuals with SCI than for the normative sample.
  2. There was no significant difference in overall residential satisfaction; however those with SCI rated their housing problems as more serious, most often related to environmental barriers.
  3. Individuals with SCI who lived in private residences had significantly greater residential satisfaction then those in apartment projects; however life satisfaction was not impacted.

Fuhrer et al. 1990; USA
Observational
Level 5
N=71

 Population: 46 independent living centers (ILCs) which have relationships with one or more medical rehabilitation programs (MRPs); 25 MRPs which have relationships with at least one of the 46 ILCs recruited.
Treatment: No treatment. Purpose was to identify types and scope of relationships which exist between ILCs and MRPs and to identify barriers and facilities of these relationships.
Outcome Measures: Types of contacts which exist between the respondent’s center and MRPs, and perceived barriers to a workable relationship with MRPs.
  1. Most ILCs and MRPs reported making ‘referrals to or providing information about’ the other; and most ILCs reported ‘peer counselling of MRP patients’ and ‘training in daily living skills’.
  2. 92% of MRPs reported use of ILC services to address housing, 84% for attendant care, 79% for transportation, and 67% for personal/ psychosocial problems, during discharge planning or outpatient follow-up.
  3. ILCs with MRP relationships served significantly more people monthly than those without MRP relationship.
  4. The use of ILC services was most frequent for individuals with SCI; >70% of individuals with SCI required ILC peer counselling services, >60% required skills training and >55% required discharge planning services.

Boschen et al. 1988; Canada
Observational
Level 5
N=82

 Population: 82 persons (65M 17F); mean age = 28 (age range =18-35); 46 with tetraplegia.
Treatment: No treatment. The purpose of the study was to examine current accommodations, housing options, and preferences.
Outcome Measures: Questionnaire to identify factors influencing choices of accommodation; preferences of types of housing; and number of housing options perceived to have been available.
  1. Seventy percent live in a private house or apartment, 19% live in an apartment project with shared attendant care services, 5% live in an institution, and 6% live in other accommodations; 69% live with one or more people and 31% live alone.
  2. Most important accommodation deciding factors in order are: location, wheelchair accessibility, family ties, finances, vacancy, and attendant care availability.
  3. Preferred accommodation was own house or apartment.

DeJong & Hughes 1982; USA
Observational
Level 5
N=33

 Population: Retrospective population of 111 people with SCI who were discharged from rehabilitation; Current population of 33 members (20M 13F) of the Massachusetts Interagency Council on Independent Living (ICIL) (19 under 35 years old; 18 not disabled).
Treatment: No treatment. The purpose of this study was to develop a long-term outcome measure of independent living by identifying outcomes from previous research and ranking and weighing their relevance to current independent living.
Outcome Measures: Retrospective extraction of data relating to living environment and productivity; New survey for ranking and weighing living arrangements and productivity.
  1. A greater weight is allocated to productivity (57%) than living arrangement (43%) when determining independent living.
  2. ‘Living with spouse/significant other and/or children’, ‘living alone’, and ‘living with friends, unrelated persons, and/or siblings’ were ranked and weighted as most positive living arrangements.
  3. ‘Living with parents and with spouse and/or children’, ‘living with relatives such as grandparents, uncles, aunts, or adult children’, and ‘living with parents or with parents and siblings’, were ranked and weighted as less desirable living arrangements.
  4. Living in an institution was ranked and weighted as least positive.

Smith & Caddick 2015; UK
Qualitative
N=20

 Population: 20 participants (15 males, 5 females), mean age of 31 years old, lived in a care home for an average of 2.3 years. 14 lived in a care home, 6 lived in the community having recently left a care home within the last 6 months.
Treatment: No treatment. The purpose was to examine the impact of being in a care home on health and wellbeing of people with SCI.
Outcome Measures: Semi-structured life story interview, approximately 2 hours on average in length. An interview guide was used to facilitate discussion (describe life and how it had been lived over time within a care home). An inductive thematic analysis was conducted on transcripts.
  1. The following 3 themes were identified. Living in a care home environment severely damages quality of life, physical health and psychological well-being.
  2. The subthemes include a lack of independence, freedom, control, flexibility, inability to participate in community life, inability to sustain meaningful relationships, safety problems, restricted participation in work, leisure and physical activity, lack of meaning and self-expression, loneliness, difficulties with the rehousing process, depression, suicidal thoughts and actions.

Dickson et al. 2011; UK
Qualitative
N=17

 Population: 17 SCI participants (14M 3F); mean age: 46 yrs (range 26-62); YPI: 17 months to 32 yrs; injury level C5-C7.
Treatment: No treatment. The purpose of the study was to capture the experience of SCI from the perspective of the individuals with it.
Outcome measures: Analysis of recurring themes concerning difficulties adjusting to life post-hospital discharge: loss of camaraderie, lack of post-discharge care, other people’s reactions to SCI.
  1. 1. Participants reported ongoing difficulties in adjusting to home life: 3 recurrent themes were:
    – “loss of camaraderie”
    – “lack of post-discharge care”
    – negative experiences with other people related to being in a wheelchair

Kuipers et al. 2011; Australia
Qualitative
N=270

 Population: 270 participants with SCI (218M 52F); mean age: 43 yrs, (range 20-76); mean YPI:16 yrs (range 0.75-55 yrs); injury level: 107 with complete quadriplegia; 100 with complete paraplegia; 63 with spared ambulatory ability.
Treatment: No treatment. The purpose of the study was to explore and clarify the differing personal perspective of what a ‘community’ is.
Outcome measures: Telephone interviews were conducted to analyze core themes concerning patients’ communities, such as social integration, independence, and occupation.
  1. In addition to descriptions of community as ‘place’, findings echoed the three dimensions commonly included in measures of community integration; “social integration”, “occupation” and “independent living”.
  2. Participants who described their community in social and relationship terms reflected generally positive views about that community, whereas those who described their community in terms of physical space and access expressed a relatively greater proportion of negative views when describing their community.
Bergmark et al. 2008; USA
Qualitative
N=22		 Population: 22 traumatic SCI participants; 16 male; mean age at injury 29.2 yrs (range 17-49); mean YPI: 14.4 yrs (range 2-37); injury level C1-C7.
Treatment: No treatment. The purpose of study was to describe the factors which influence tetraplegic participants’ residence decisions and the general pattern of residence among tetraplegic individuals.
Outcome Measures: 15 open-ended questions, administered in an interview, either in person or on the phone.
  1. Participants lived in 5 kinds of places post-injury: own or friends’ homes, parents’ home, group home/board and care, skilled nursing facilities (SNF), and rehabilitation facilities.
  2. Participants moved on average 3.3 times after discharge.
  3. Factors influencing residence moves include information, money, accessibility, insurance, intimate relationships, personal assistance and caregiving.
  4. Participants living in parents’ home or institutions thought it was their “only option”, and is seen as a “stepping stone” towards moving into their own homes, which is their goal.

Discussion

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.

Conclusion

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.

In many cases, discharge from hospital is delayed for SCI patients due to lack of accessible housing, which leads to unnecessarily increased cost of care.

Independent Living Centres with Medical Rehabilitation Program relationships serve more clients than those without, and the most frequently serviced individuals are those with SCI who attend for peer counseling, skills training and discharge planning.

Marital status, transportation barriers, education level, medical supervision requirements, economic disincentives, services received, and severity of disability are predictors of independent living.

Choice and control are important when planning living situations and setting goals with clients with SCI because they are directly related to residential and life satisfaction.

Individuals with SCI have lower perceived life satisfaction, locus of control, and satisfaction with certain aspects of housing than a normative sample.

Accommodation options for a person with a disability are limited. The preferred accommodation is a private house or apartment. Living with a spouse and/or children, living alone, or living with unrelated persons are more desirable arrangements than living with parents and spouse/children together, living with distant family (i.e. grandparents), or living with parents and siblings.

Living with someone prior to SCI, having insurance or private funding for equipment, and being young decreases the risk of being discharged to an extended care facility following SCI rehabilitation.

Individuals with SCI have a need for assistance with fire safety to increase their perception of home safety.

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.

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