Using the family resilience model, we examined the association between empowerment, family member age, length of institutionalization, and resilience among family members of relatives with intellectual and developmental disabilities (IDD) following deinstitutionalization. Participants included 56 family members whose relatives with IDD recently transitioned to community living. Results strongly indicate empowerment plays a key role in positive family adaptation. Thus, following a relative's move from an institution to the community, empowerment is a promising form of protection that holds potential to increase family resilience. The results of the current study support the family resilience model as a foundation for future research regarding how families navigate significant transitions throughout the lifespan. Implications for practice and policy are provided.
Families of individuals with intellectual and developmental disabilities (IDD) experience unique challenges across the lifespan (see Fujiura, 2010; Given, Given, Sherwood, & DeVoss, 2013; Heller, Gibbons, & Fisher, 2015; Hewitt, Agosta, Heller, Williams, & Reinke, 2013). Although some families function well despite significant risk (Bayat, 2007), resilience among families of individuals with IDD is not well understood. Because family members are the largest providers of care for individuals with IDD in the United States (Larson et al., 2017), it is imperative that families be adequately supported. Thus, ongoing work is necessary to enhance understanding of what helps families navigate significant transitions throughout the lifespan with resilience (Henry, Morris, & Harrist, 2015).
One factor with potential to afford protection to families during transitions involving service provision is family empowerment. For the purpose of the current study, family empowerment is operationalized as family skills and knowledge to navigate complex systems in order to access needed services. Family empowerment includes family members' attitudes, knowledge, and behaviors regarding their ability to control and affect change in their lives and for others at the family, social system, and larger community and political levels (see Koren, DeChillo, & Friesen, 1992). Despite the importance of recent research emphasizing advocacy programs to increase family empowerment (Burke, Magana, Garcia, & Mello, 2016; Burke & Sandman, 2017; Taylor, Hodapp, Burke, Waitz-Kudla, & Rabideau, 2017), little is known about if or how empowerment translates into family resilience during times of significant change. Based on the family resilience model (FRM; Henry et al., 2015), we examined empowerment and demographic variables in relation to family resilience as perceived by parents and siblings (hereafter referred to as family members) whose offspring or siblings with IDD (hereafter referred to as relatives) recently transitioned from living in state-operated institutions to living in the community and receiving residential supports and services.
Review of Literature
Supports and services for adults with IDD have changed greatly over the last several decades as many states shifted from state-operated institutions to community living (Hewitt, Nord, Bogenshutz, & Reinke, 2013). These changes in service provision are often referred to as deinstitutionalization (Hewitt et al., 2013). The momentum in the deinstitutionalization movement is illustrated by the number of individuals living in state-operated institutions in the United States dropping dramatically from 194,650 in 1967 to 21,103 in 2015 (Braddock, Hemp, Tanis, Wu, & Haffer, 2017). By 2015, 15 states closed all of their state-operated institutions, with 12 facilities in other states projected to close by June 2019 and two more states planning facility closures by the end of 2021 (Larson et al., 2017). With many states in the nation working towards closure of state-operated institutions (Braddock et al., 2017; Larson et al., 2017), deinstitutionalization remains a current issue for professionals and a deeply personal issue for individuals transitioning to community living and their family members (Jones & Gallus, 2016).
Family members whose relatives remained in state-operated institutions may have limited awareness of current supports and services available in the community and might fear that living in the community is not safe for their relatives (Jones & Gallus, 2016). This may be especially true for family members whose relatives lived in a state-operated institution the vast majority of their lives. Indeed, the age composition of individuals remaining in state-operated institutions has steadily shifted from young to old with 77% of individuals who remained in state-operated institutions in 2015 over the age of 40 (Larson et al., 2017). This indicates that for many of these individuals and their family members, institutionalized care may be the only model familiar to them.
When individuals with IDD move from living in institutions to living in the community, it introduces a significant change in their lives and the lives of their family members as they learn to navigate new systems of supports and services and changes in routines, roles, rules, and rituals (Harrist, Henry, Liu, & Morris, 2018; Jones & Gallus, 2016). During this process, families may experience at least a temporary imbalance between new demands and the resources available to address the change. In turn, the extent to which families engage in resilience processes that foster positive outcomes may vary considerably. Thus, it is critical to identify factors that provide useful points of intervention for families during the process of deinstitutionalization in order to better understand family resilience in times of transition.
The Family Resilience Model
The FRM is a strengths-based approach to understanding family adaptation to significant risk (Henry et al., 2015; see Figure 1) that holds potential to explain what helps family members navigate a relative's transition from institutional care to community-based services. The conceptualization of family resilience, or positively adapting to significant risk, is based on the integration of ideas from family systems theory, family stress theory, and individual resilience (Hawley & DeHaan, 1996). The FRM employs earlier conceptualizations of family resilience as involving the processes of mobilizing family-level relational patterns and accessing new resources to foster positive outcomes (or adaptation) to significant risk (Pattterson, 2002a; Walsh, 2012).
The FRM proposes that, within ecosystems, on-going family interaction patterns (or family adaptive systems), and family meanings about specific situations, families can engage in the resilience processes of mobilizing their strengths and accessing new resources as protection against the potential negative effects of a significant risk and other vulnerabilities to show positive adaptation (or resilience outcomes; Henry et al., 2015). Adaptation occurs in family systems when families fulfill family functions and meet individual family members' needs despite the stressors and changes associated with deinstitutionalization (Patterson, 2002a). In the present study, we focus on resilience processes that protect against the potential negative outcomes that are common to a significant risk, allowing families to manage challenges that arise over time and under different conditions before, during, or after a change or stressor occurs (Henry et al., 2015).
Walsh (2012; 2016) conceptualized the key processes of family resilience as involving belief systems (e.g., positive outlook, meaning-making, spirituality), organizational processes (e.g., flexibility, connectedness), and communication processes (e.g., emotional sharing, collaborative problem-solving). Expanding upon Walsh's approach, Martin, Distelberg, Palmer, and Jeste (2015) broadly conceptualized resilience in caregivers of older adults as involving both individual and relational processes (e.g., perceived economic and social resources, relational accord, emotional regulation). Given the potential applicability of Martin et al.'s (2015) work to family members responsible for managing the care of relatives with IDD, we utilize a global conceptualization of family resilience processes that afford protection to families. In addition, we introduce family empowerment as a form of protection that holds potential to explain variation in global family resilience. Based on these ideas, we examined family empowerment (protection) and selected demographic factors (vulnerabilities) as variables impacting family resilience processes (hereafter termed family resilience) in the context of the significant risk of changes in the supports and services for relatives with IDD during the transition from institutional to community living.
Changes in supports and services as significant risk
Significant risk is inherently value-neutral and can arise from the introduction of either a positive or negative event that disrupts on-going family dynamics (e.g., routines, roles, rules, and rituals) associated with key aspects of family functioning (Harrist et al., 2018; Henry et al., 2015; Patterson, 2002b). Thus, the change in services and supports that accompanies the transition from institutionalization to living in the community can be considered, at least temporarily, a significant risk for families due to changes in on-going family routines, roles, rules, and rituals. When the institutional model of care for individuals with IDD peaked in the mid-20th century, research shows that the initial decision to institutionalize was not an easy one; yet, institutional care was often the only choice for many families and was encouraged by professionals at the time (Berry, 1995). Many families who chose to keep their relatives at home struggled to gain access to the services they needed for their children. Children with IDD were denied admission to public schools, unable to access expensive therapy services or adequate health care, and unable to secure appropriate care (Berry, 1995). Although the decision to institutionalize was often a painful one, institutions frequently promised the safety, access to medical care, and protection from social stigmas that families wanted for their relatives (Berry, 1995).
Although decades of research now clearly indicate that community living enhances the quality of life for individuals with IDD (Larson, Lakin, & Hill, 2012; Wehmeyer & Bolding, 2001) and is a human and civil right, initial opposition to deinstitutionalization by some families remains prevalent (Berry, 1995; Heller, Bond, & Braddock, 1988; Jones & Gallus, 2016; Larson & Lakin, 1991; Tabatabainia, 2003; Tossebro & Lundeby, 2006). Although families' opposition to deinstitutionalization often shifts to satisfaction with community living over time, it is important to understand why some families may oppose the transition of their relatives with IDD to community living. One possibility is that deinstitutionalization brings about significant change in services and supports and may mean routines, roles, rules, and rituals need to be modified or new ones need to be added to restore balance between the responsibilities of family members and available resources (Harrist et al., 2018; Jones & Gallus, 2016).
Significant risk arises when families experience change from an ongoing challenge or specific stressor that creates an imbalance between the challenges they experience and available resources (Patterson, 2002a). Although most adults with IDD leaving state-operated institutions do not move back into the family home, family members are often overseers of care as their relatives move into the community (Jones & Gallus, 2016). As families work to assist their relatives in a move to the community, they often rely heavily upon public social service systems. Families may perceive a lack of planning or collaboration during the deinstitutionalization process or experience inadequate supports or services to meet their relatives' needs (Jones & Gallus, 2016; Tabatabainia, 2003). These concerns highlight families' reliance on long-term supports and services. Knowledge of how to navigate new systems and changes in provisions of services may create a temporary imbalance between family members' demands and available resources. Thus, family empowerment, the skills and knowledge to navigate complex social service systems, may provide a mechanism for increasing positive outcomes for families overall. Indeed, both theoretical and empirical evidence suggests that empowerment in families regarding social service networks may play a role in helping both individuals and their families achieve better outcomes (Singh et al., 1995). Consistent findings that families do shift from opposition to satisfaction with community living over time (Jones & Gallus, 2016; Larson & Lakin, 1991; Tossebro & Lundeby, 2006) indicate not only that families see benefits for their relatives living in the community, but also that many families adapt successfully to the changes in service provision and to new roles, rituals, rules, and routines. However, the process of this adaption is not well understood; thus, it is important to identify factors of vulnerability and protection.
Selected family demographic factors as vulnerabilities
Because significant risk often co-occurs with other family vulnerabilities (Patterson, 2002a), it is important to consider the possibility that factors not directly related to the transition from institutionalized care to community living may be present. Vulnerabilities are any demands or on-going challenges a family experiences at the same time or during the process of managing a significant risk that increases the overall demands the family experiences (Henry et al., 2015). Vulnerabilities may arise in individual family members, family subsystems, overall family systems, and family interfaces with communities or polices (Henry et al., 2015). These vulnerabilities may contribute to a pile-up of stressors that complicate the transition (Patterson, 2002b). For example, changes in funding may compromise family members' abilities to access supports and services for relatives with IDD, the chronic illness of another family member may be present, or family members responsible for managing the care of a relative with IDD may experience health declines.
Family members may also experience additional vulnerabilities related to aging and caregiving. The lifelong nature of family caregiving for relatives with IDD increases the potential for caregiver distress or burden (Larson et al., 2017). Caregiver burden refers to the physical, emotional, psychological, social, and financial problems of family caregivers (Given et al., 2013). Triggered by the strain of care and restriction of daily activities (Given et al., 2013), caregiver burden can add vulnerability to overall family resilience. Caregiving in mid- and late-life also presents unique challenges. As family members age, rates of health and mental health difficulties increase, adding to the difficulties that accompany prolonged caregiving (Heller et al., 2015) and increasing family vulnerability.
Another potential vulnerability is the number of years a relative with IDD lived in an institution. Family routines and rituals are likely to be long-standing and entrenched in older, long-established families when their relatives transition from an institution to the community (Fiese, 2006; Harrist et al., 2018). Deinstitutionalization may disrupt existing routines and rituals; thus, vulnerability may be greater in families with relatives who lived in institutions for a greater length of time.
Family empowerment as protection
Walsh (2012) conceptualized each family as possessing strengths that can be mobilized, as needed, and used in concert with other resources (e.g., community services) in the ecosystem to manage significant risk. Within the FRM, this premise is reflected in the concept of protection, which includes both tangible and intangible family resources that modify risk, minimize negative cascades, and promote competence despite challenges (Henry et al., 2015). Protection may arise within individual family members, family subsystems (e.g., sibling, or couple relationships), overall family systems, or the interface of families and community services (Henry et al., 2015). In the current study, the focus is on family empowerment as a strength that family members may call upon to successfully manage the transitions associated with deinstitutionalization of a relative with IDD (Walsh, 2012). As conceptualized in this study, family empowerment is broadly defined as “the ongoing capacity of individuals or groups to act on their own behalf to achieve a greater measure of control over their lives and destinies” (Koren et al., 1992, p. 308). Thus, family empowerment includes the process of families accessing knowledge, skills, and resources that enable them to navigate the complex social service systems that are likely to increase positive outcomes during times of transition (Singh et al., 1995). Indeed, both theoretical and empirical evidence supports family empowerment regarding social service networks as beneficial in helping both individuals with IDD and their families move toward positive adaptation (Singh et al., 1995).
Family empowerment can be expressed across three domains: attitudes, knowledge, and behaviors. The feelings, beliefs, knowledge, potential actions, and actual actions reflected in these three expressions of empowerment occur within the family and as families interact with service systems and community and political environments (Koren et al., 1992). Collectively, these domains provide insight into how families work to influence their social environments to promote positive outcomes and higher quality of life (Singh et al., 1995). Family empowerment is likely to increase family members' abilities to manage their own daily life tasks, work with social programs to receive needed services for their relatives with IDD, and advocate for improved services for individuals with IDD and their families overall (Koren et al., 1992). Research shows empowerment is related to several factors associated with resilience including lower levels of stress and higher levels of family functioning, education, employment, mental health status, and family involvement, among other positive outcomes (Resendez, Quist, & Matshazi, 2000). Although family empowerment holds potential as a mechanism for families to mobilize existing strengths and access new resources, family vulnerabilities such as difficulties associated with the aging of family members (Hahn et al., 2016) and the length of institutionalization of relatives with IDD may attenuate empowerment's effectiveness as protection. Thus, this possibility merits investigation.
The FRM is not yet widely applied in the field of IDD, limiting knowledge of resilience processes among families of relatives with IDD. Research on the association of protection and vulnerabilities with resilience processes that afford protection during times of transition is necessary to address the gaps in literature and contribute to building conceptual models of factors associated with family resilience. In a step toward this goal, we applied selected variables representing concepts in the FRM to the experiences of a unique cohort of families whose relatives recently transitioned from living in an institution to living in the community.
On November 1, 2012, the Oklahoma Department of Human Services passed a resolution to close the two remaining state-operated institutions that were providing services to approximately 240 individuals with IDD in Oklahoma (Oklahoma Commission for Family Services, 2012). The closing of these institutions, Northern Oklahoma Resource Center of Enid and Southern Oklahoma Resource Center in Pauls Valley, was carried out through institutional phase down plans over the next two and a half years. In the current study, we examined the possibility that family empowerment and the additional vulnerabilities of the age of the parent or sibling overseeing care and length of institutionalization for their relatives with IDD were associated with increased protection to mobilize toward family resilience.
With the overarching goal of better understanding factors that contribute to family adaptation, two research questions guided the study. First, how are family empowerment (one form of protection) and selected vulnerabilities (family member age and relative length of institutionalization) associated with family members' perceptions regarding available family resilience? Second, do these selected vulnerabilities moderate the association of family empowerment and available family resilience? Specifically, three hypotheses were tested: (1) family empowerment is positively associated with family resilience and therefore acts as protection; (2) family member age is negatively associated with family resilience and therefore acts as vulnerability; and (3) relative length of institutionalization is negatively associated with family resilience and therefore acts as vulnerability. Additionally, although existing research did not allow for specific hypotheses, we examined the possibility that each of the vulnerability variables might moderate the association between family empowerment and family resilience: age of the family member and length of institutionalization.
This study was based on self-report data collected from family members between January and May 2015 as part of a larger mixed-methods study (Jones & Gallus, 2016) focused on enhancing understanding of family members' experiences during the mandated transition of relatives from institutional care to community living. Permission to conduct the study was granted by the supervising university's Institutional Review Board. The Oklahoma Department of Human Services—Developmental Disabilities Services provided the research team with a list of names and contact information for 153 family members, all of whom were also the legal guardians of their relatives with IDD who had transitioned out of state-operated institutions between August 2012 and April 2014. Family members were excluded in the sampling frame prior to recruitment if (a) they resided outside of Oklahoma or (b) their relatives with IDD had not lived in the community for 6 months or more.
Letters of invitation, an overview of the study, informed consent, self-report questionnaires, and a self-addressed stamped envelope to use for returning the completed questionnaires were mailed to 135 family members. Documentation of consent was waived for participant confidentiality and all participants indicated consent by their willingness to complete and return the survey by mail. Of 135 surveys mailed, 56 (41.5%) were completed and returned.
Participants included 56 family members. Of these, 64% were parents (48% mothers and 16% fathers) and 36% were siblings (29% sisters and 7% brothers). The mean age of family members was 66.7 years (SD = 9.9) and the majority (80.4%) reported their race/ethnicity as Caucasian. Mean age of relatives with IDD was 50.3 years (SD = 8.5) and the mean length of institutionalization was 42.3 years (SD = 8.7). Table 1 includes additional demographic information for family members and their relatives with IDD.
Family members reported their age, gender, relationship to relative, marital status, race, and level of education as well as employment status, income, and health information. In addition, family members were asked to provide information about the residential history of their relatives (i.e., son, daughter, sibling) who had recently moved to the community. All relatives in the current sample were also participants in the 2015–2016 Oklahoma National Core Indicators (NCI) Project. Thus, relatives' demographic information was collected as part of the Oklahoma NCI Adult Consumer Survey (ACS.) Family members were informed that consent to participate in the study included linking relative data from the ACS and family member data from this survey.
Family empowerment was assessed using the Family Empowerment Scale (FES; Koren et al., 1992), adapted for use with family members of adults with IDD. The FES is a 34-item rating scale developed to measure levels of empowerment in families with children with emotional, behavioral, or mental disorders and shows promise for use with families whose children have a disability. The FES measures empowerment on a five-point Likert scale that taps into empowerment at three levels: (a) family (“I believe I can solve problems with my child when they happen”), (b) service system (“I know what services my child needs”), and (c) community/political (“I know how to get agency administrators or legislators to listen to me”) across three domains: (a) attitudes, (b) knowledge, and (c) behavior (Koren et al., 1992). For each subscale and for the total scale, higher scores reflect more empowerment. A total FES score, calculated by summing all of the items, is utilized in the current study. The FES reports adequate reliability, with internal consistency ranging from .87 to .88. and test-retest reliability ranging from .77 to .85 (Koren et al., 1992). Alphas for the current study ranged from .77 to .90 with good reliability overall (.88).
Family resilience was assessed using the 22-item Multidimensional Individual and Interpersonal Resilience Measure (MIIRM; Martin et al., 2015). The MIIRM was developed to measure individual and family resilience in a population of older adults (aged 50 to 99 years) and includes eight domains: self-efficacy, access to support networks, optimism, perceived economic and social resources, spirituality and religiosity, relational accord, emotional expression and communication, and emotion regulation (Martin et al., 2015). Sample items include “I am able to adapt to change,” and “Overall, I expect more good things to happen to me than bad” (Martin et al., 2015). Items are summed to form a total score reflecting overall family resilience, with higher scores reflecting higher levels of resilience (Martin et al., 2015). Alpha for the MIIRM is .72, indicating the measure demonstrates adequate internal consistency. Alpha for the current study was .76.
Plan of Analysis
Multiple regression analysis was used to develop a model for predicting total family resilience from family empowerment, family member age, and length of institutionalization. Additionally, two interaction terms, total family empowerment X family member age and total family empowerment X length of institutionalization, were created and entered into the regression to test for moderation effects. Missing data was accounted for using listwise deletion, yielding a total sample of 53 on all variables. Prior to analysis, data were tested for violations of normality, independence, and homoscedasticity. Examination of Q-Q plots and a nonsignificant Shapiro-Wilk test (Shapiro & Wilk, 1965) revealed normally distributed residuals. Additionally, examination of scatterplots showed independence and homoscedasticity. Multicollinearity was assessed first by computing and analyzing correlations and then by examining variance inflation factors (VIF). Although none of the independent variables were significantly associated with each other (see Table 2) and all VIF were lower than 10, some association between the independent variables was assumed. Thus, variables were centered to remove nonessential multicollinearity prior to creating interaction terms and completing analyses. Following transformation, the highest VIF was 1.18.
To test for effects in the adaptation variable, which may result from the relationship of the family member (parent or sibling) to his or her relative with IDD, an independent samples t test was used. Results from the independent samples t test were not significant, suggesting no group differences in family resilience between parents (M = 82.03, SD = 9.77) and siblings (M = 86.13, SD = 8.04), t(51) = −1.53, p = .132, ns. Additionally, no significant differences were found between parents (M = 130.36, SD = 25.24) and siblings (M = 130.43, SD = 17.88) for family empowerment, t(53) = −.01, p = .991, ns. Due to lack of significant statistical differences between groups on these variables, relationship to relative was not accounted for in further analyses. As expected, ages of parents (M = 69.81, SD = 9.47) and siblings (M = 61.30, SD = 8.25) were significantly different, t(54) = 3.37, p = .001. Also as expected, length of institutionalization differed in families with parent participants (M = 38.89, SD = 7.85) and sibling participants (M = 48.45, SD = 6.44), t(54) = −4.64, p < .001.
Multiple Linear Regression
The results of the multiple regression analysis (see Table 3) indicate that the set of predictors explained 32.2% of the total variance in family resilience, R2 = .322, (R2 adjusted = .250), F(5,47) = 4.47, p = .002. Results show that holding family member age and length of institutionalization constant, family empowerment significantly predicted family resilience. A marginally significant effect was found for length of institutionalization. No main effect was found for family member age.
To test whether either family member age or length of institutionalization moderated the association between family empowerment and family resilience, 2 two-way interactions were entered into the regression (family member age X family empowerment, length of institutionalization X family empowerment). Results of the interactions were not significant (see Table 3), providing no evidence that moderation exists.
Post Hoc Analysis
Because family member age was not a significant predictor of family resilience, an exploratory post hoc regression analysis was completed to determine whether the removal of family member age would remove variance in family resilience accounted for by the model or if the variance would be reassigned to length of institutionalization. The results of the analysis indicated that length of institutionalization, family empowerment, and their interaction explained 31.6% of the total variance in family resilience, R2 = .316, (R2 adjusted = .275), F(3,49) = 7.56, p < .001, indicating that even after the removal of family member age, the regression model adequately estimated family resilience. As expected, the removal of family member age increased the regression coefficient for length of institutionalization and allowed for statistical significance (see Table 4) and the coefficient for family empowerment was not affected. Similarly, the interaction between length of institutionalization and family empowerment remained nonsignificant.
Guided by the FRM as a theoretical basis for understanding what contributes to family adaptation in the context of significant change (Henry et al., 2015), the goals of the current study were to empirically test for associations between family empowerment, family member age, length of institutionalization, and family resilience, and to test for interaction effects between family empowerment and the selected family demographic variables hypothesized to act as vulnerabilities. Previous research supports empowerment as a central focus of services for families to improve family outcomes (Koren et al., 1992; Resendez et al., 2000; Singh et al., 1995). The present results strongly indicate that, for family members responsible for overseeing the care of their relatives with IDD, empowerment plays a key role in positive family adaptation. Holding the age of family member and length of institutionalization constant, overall level of positive adaptation can be explained in part by level of family empowerment. Following a relative's move from an institution to living in the community, family empowerment is a promising form of protection that holds potential to increase family resilience.
Findings from this study support previous research that when family members act on behalf of their families by influencing environments and gaining positive control over their lives (Koren et al., 1992; Resendez et al., 2000; Singh et al., 1995;), the magnitude of risk is reduced through feelings of positive self-worth, power, and authority over life circumstances (Bailey & Gordon, 2016). Thus, family empowerment is a promising mechanism through which overall positive family adaptation can occur following state-mandated deinstitutionalization. More specifically, the current findings, which support the role of family empowerment in positive adaptation, may provide insight into families' negative reactions to transitions. For example, if having the skills and information necessary to choose supports and services helps families adapt, having no choice (or having the perception of no choice) over supports and services would have a deleterious effect. Indeed, much of the deinstitutionalization literature suggests families tend to initially oppose the shift from institutions to the community (Berry, 1995; Heller, et al., 1988; Jones & Gallus, 2016; Larson & Lakin, 1991; Tabatabainia, 2003; Tossebro, 1998; Tossebro & Lundeby, 2006) due to fears regarding community-based services and, therefore, have a strong desire to collaborate with state agencies and service providers in the transition process (Jones & Gallus, 2016). Thus, the finding that family empowerment holds potential to enhance family resilience is consonant with earlier research on families' needs during deinstitutionalization and, taken together, suggests that professionals have potential to aid families in the development or mobilization of empowerment during transitions.
Despite literature suggesting that age of the family member age and length of relative's institutionalization have the potential to indirectly influence families' overall well-being (Fiese, 2006; Heller et al., 2015; Williamson & Perkins, 2014), the present study results did not support either age of the family member or length of institutionalization as salient factors in family resilience. These findings further illustrate the potential value of supporting family empowerment to foster resilience. Simply put, regardless of how old or young the family member is and regardless of how long the relative lived away from the community in an institutional setting, a family member's ability to navigate the social service system to access needed resources for his or her relative appears to hold potential to foster resilience.
One possible explanation for why family member age and length of institutionalization did not significantly predict family resilience is that the effect was present but the limitations presented by the size of the sample did not allow for statistical detection. This explanation is partially supported by the marginally significant effect found for length of institutionalization. Another explanation for this may be that the variables hypothesized as vulnerability do not negatively affect overall family adaptation in times of significant transition and do not, therefore, contribute to vulnerability. Support for this is found in the results of the exploratory post hoc regression analysis. Because the removal of family member age from the model did not notably decrease the amount of variance in family resilience accounted for by length of institutionalization and family empowerment, it is reasonable to conclude that family member age is neither a vulnerability factor nor is it relevant for overall family resilience when family empowerment is considered. Support for this explanation is evident in the positive direction of association between both variables and family resilience. Although not statistically significant, this positive association is in the opposite direction from what would be evident if these factors were vulnerabilities. That is, if the factors truly acted as vulnerabilities, the association should have been negative.
Strengths and Limitations
Among the methodological strengths of the present study is the use of the FRM as a foundation for both the categorization of variables as factors and the association of the predictors with the outcome. The FRM provided a solid framework that highlighted relevant variables and eliminated the inclusion of variables not likely to be associated with family adaptation. Although the internal validity of the current study is strong, some limitations for external validity merit consideration. Although the sample was representative of the population of families whose relatives were leaving state-operated institutions in Oklahoma, it was relatively small and fairly homogenous. The majority of the participating family members were Caucasian females between 56 and 76 years of age; as such, these results may not be generalizable to younger family members, male family members, or other racial/ethnic groups. Additionally, it was not possible to determine differences between those who chose to participate in the study and those who did not. Because participants in the sampling frame self-selected, it is possible that more empowered family members completed the study and less empowered families chose not to do so.
Further, the study utilized a cross-sectional design. Longitudinal studies are needed to verify factors that increase or decrease family resilience as well as those that impact resilience trajectories following deinstitutionalization. This approach would provide stronger evidence of the pathways of resilience processes in families undergoing transitions across the lifespan. Also, the use of single-informant response items for a family-level construct addresses only one of several possible viewpoints on family phenomena (Olson, 1977). Although the FRM is robust to this limitation by including individual perceptions as one level of analysis, caution about generalizing the results to other family members is important. Thus, although valid for the current study because responses provide the primary family members' perceptions of how well their families function, future research should employ multi-informant measures and multilevel modeling techniques (or other methods resistant to these threats) to capture processes within families that may contribute to positive adaptation.
Implications for Research
Although the current study utilized a sample of families whose relative had recently moved from a state-operated institution into the community, this is only one context of transition. Findings from the current study lay the foundation for future research to explore whether family empowerment functions similarly to enhance family resilience across other common transitions (e.g., entering and exiting the school system, employment, moving out of the family home) that bring significant changes for individuals with IDD and their families. Results of the current study highlight the importance of family empowerment on family adaptation following significant changes in service provision to individuals; however, every relative with IDD in the current study received services as a result of mandated deinstitutionalization. For family empowerment to have an effect on families' perceptions of their own ability to access provided services, there must first be services to access. Thus, more research on the influence of empowerment for other transitions in which additional barriers to services exist (e.g., eligibility requirements, income thresholds, waiting lists) should be conducted. Indeed, the effect of service provision change on individuals with IDD and their families may differ significantly depending upon the availability and quality of supports and services in the community and the extent to which families see these as viable ways of addressing their relatives' needs. Future research on resilience in families of individuals with IDD during times of significant change should explore both the timing of transitions as well as families' access to quality community supports.
Additionally, previous research suggests that utilizing the three FES subscales (i.e., family, service system, community/political) instead of an overall score may provide more salient information on the association between empowerment and resilience in families of adults with IDD (see Burke et al., 2016; Burke & Sandman, 2017), although no research suggesting prominence of one domain over the others exists. As the subscales are highly correlated, regression analysis including all subscales in this sample would be inappropriate. However, future research exploring the relationship between family resilience and empowerment at the family, service system, and community/political levels may provide insight for transition planning.
Implications for Practice and Policy
Family members are and will continue to be the largest providers of care for individuals with IDD in the United States and must be supported (Larson et al., 2017). Consistent with a strengths-based approach in the field of IDD, family resilience perspectives support the need for both policies and practices that enhance the existing qualities of individuals and families. This is especially true for families of individuals with IDD in times of transition. By increasing empowerment in families through knowledge, behavior, and attitude interventions, better outcomes for family well-being are possible. Results in the current study support previous work focused on increasing family empowerment via parent advocacy programs (Burke et al., 2016; Burke & Sandman, 2017; Taylor et al., 2017) and suggest that practitioners should work to empower families in order to promote better outcomes during times of transition across the lifespan.
The development or mobilization of empowerment requires a multifaceted intervention approach. Practitioners can help families build capacity for advocacy through interventions targeted at providing information and training regarding navigating the complexities of community-based services. However, information and training alone are not sufficient. In order for family empowerment to have full effect, professionals must work alongside families to remove ongoing and systemic barriers (e.g., direct support professional turnover, access to consistent quality services) that families too often encounter when their relatives move into the community (Jones & Gallus, 2016).
Although continued exploration of factors that enhance family empowerment and family adaptation across different transitions can provide practitioners with tools to help families navigate and successfully adapt to changes, we stress that availability of quality services is an essential prerequisite to family empowerment's protective qualities. If services cannot be accessed when needed and/or if power structures are unresponsive to individual and family need, families will likely have low perception of their own empowerment, removing any protective qualities it may have. Thus, although it is necessary for practitioners to work toward empowering families to better navigate social service systems, it is also necessary for professionals to work to remove barriers to service provision.
Although the focus of this study is on family empowerment and family resilience, it is critical to understand the implications of deinstitutionalization are most prominent for the relatives with IDD. Individuals with IDD have a fundamental right to live, work, and play in the community of their choosing. Citing the 15 states that have closed all of their state-operated institutions as evidence, Larson and colleagues conclude it is possible to serve individuals with IDD in community settings regardless of age and regardless of level of intellectual disability (Larson et al., 2017). Yet the capacity of some states to close all state-operated institutions may not sufficiently reflect the quality or availability of community-based services across the nation (Larson et al., 2017). The development of policies and practices for successfully moving individuals currently living in state-operated institutions into community settings will require individualized person-centered plans with meaningful opportunities for community inclusion (Larson et al., 2017) along with the development of effective family supports. In doing so, individuals with IDD will have the opportunity to live self-determined lives and their families will be more empowered and resilient during times of such significant change.
This research was supported in part by a grant from the Endowed Professorship on Parenting, Department of Human Development and Family Science, Oklahoma State University.
Thank you to the parents and siblings who participated in this research and allowed us to learn from their experiences.