Supporting people with intellectual and developmental disabilities (IDD) to thrive requires careful consideration of multiple avenues of community involvement. Yet little attention has focused on the place of faith community participation in the lives of adults with IDD. We examined attendance at religious services using National Core Indicator data for a sample of 12,706 adults with IDD residing in 24 states. Almost half of adults (48.3%) reported attending a religious service in the past month, and more than one third (34.6%) attended 3 or more times. Religious involvement varied considerably based on a variety of individual (e.g., race, disability type, behavioral support needs, communication mode) and contextual factors (e.g., geographic locale, residential type). Moreover, monthly involvement in religious activities was much less common than participation in other community activities (i.e., exercise, entertainment, eating out, shopping). We offer recommendations for supporting the spiritual lives of adults with IDD, as well as highlight areas for future research and practice.
The most compelling systems of services and supports strive to help people with intellectual and developmental disabilities (IDD) live well in community. This emphasis on ensuring people with IDD can participate fully in the breadth of activities that may enhance their quality of life has led the field to focus attention on dimensions of life as diverse as employment (Mank & Grossi, 2013), recreation (Datillo, 2013), relationships (Amado, Degrande, Boice, & Hutcheson, 2012), lifelong education (Grigal, Hart, & Weir, 2013), and residential living (Hewitt, Nord, Bogenschutz, & Reinke, 2013). Involvement in each of these areas can make important, but unique, contributions to overall well-being. Moreover, the disability field has already made significant strides toward understanding what full participation might look like and how it could be further enhanced.
Yet human flourishing can certainly be influenced by other areas of life. Spirituality and religion represent one such area of life for many people. Koenig, King, and Carson (2012) identified more than 250 studies examining the association among spirituality, congregational participation, and various indicators of well-being. Although far less attention has focused on this aspect of the lives of people with IDD (Carter, 2013), available research suggests disability is not a reliable predictor of the importance of spiritual and religious expression. For example, a National Organization on Disability (2004) study found that almost exactly the same percentage of Americans with and without disabilities (i.e., 84%-87%) considered their faith to be somewhat or very important to them. Smaller-scale studies also affirm the salience of faith and spiritual expression in the lives of people with IDD (e.g., Lifshitz, Weiss, Fridel, & Glaubman, 2009; Liu, Carter, Boehm, Annandale, & Taylor, 2014; Shogren & Rye, 2005).
To date, relatively little empirical attention has focused on the participation of people with IDD in religious services and other spiritual activities. A 2010 Kessler Foundation/National Organization on Disability survey of 1,000 people with disabilities found that half of respondents reported attending a place of worship at least once per month. Although disability category was not reported, respondents identifying themselves as having “somewhat or very” severe disabilities attended at lower rates than individuals with “slight or moderate” disabilities (45% versus 58%). Drawing upon the National Health and Nutrition Examination Survey-III, Gillum and Trulear (2008) found that less than one third of adults with mobility impairments (ages 20-59) attended religious services at least weekly. Other studies addressing congregational participation have been constrained by small participant samples or a narrow regional reach (e.g., McNair & Smith, 2000; Minton & Dodder, 2003; Orsmond, Krauss, & Seltzer, 2004; Shogren & Rye, 2005; Turner, Hatton, Shah, Stansfield, & Rahim, 2004).
Additional research is needed to address several critical gaps in this area of the community inclusion. First, large-scale studies focused specifically on the congregational participation of adults with IDD remain absent from the literature. Descriptive studies addressing employment, residential, and other community participation all suggest the outcomes of individuals with IDD are substantively different from those of individuals without similar disabilities (Newman et al., 2011). Also absent is information about who accompanies adults to these community activities. Second, adults with IDD are extremely heterogeneous in terms of their needs, characteristics, interests, and strengths. Exploring variations in the extent to which people with IDD are involved in congregational activities could yield new insights into salient factors that may impact active participation in this dimension of life. For example, demographic-related variables (e.g., age, gender, race/ethnicity), disability-related variables (e.g., severity, mobility, communication), and support-related variables (e.g., behavioral, residential) might each impact the extent to which people with IDD participate in religious activities. Similarly, regional differences in the religiosity of people without disabilities have been well-documented (Gallup, 2013; Putnam & Campbell, 2010), suggesting a broader contextual factor that may influence this type of community involvement. To date, this constellation of variables has not been explored as potential predictors of congregational participation. Third, involvement in most community activities tend to be fairly limited for adults with IDD (Datillo, 2013; Newman et al., 2011). Anchoring data on congregational participation to other types of community involvement could provide insight into the extent to which participation in religious activities is comparable.
The purpose of this study was to examine the faith community involvement of adults with IDD. We sought to answer five questions: (1) To what extent do adults with IDD participate in religious services or spiritual practices? (2) What individual and contextual factors are associated with variations in this participation? (3) Who accompanies these adults to religious services and how does this compare with other community activities? (4) How does this avenue for community involvement compare to participation in other community activities? (5) Are individuals who attend religious services more likely to engage in other community activities than those who do not attend religious services?
To answer these questions, we analyzed data from the National Core Indicator project (Human Services Research Institute & National Association of State Directors of Developmental Disabilities Services, 2012). This data set is well-suited to answer these research questions given its national sample size, the large number of participating states, the inclusion of a range of relevant demographic factors, and its ongoing approach to annual data collection. Thus, it provides a unique source other scholars can use to track changes in participation over time.
National Core Indicators
The National Core Indicators (NCI) began in 1997 as a collaboration between the Human Services Research Institute (HSRI) and the National Association of State Directors of Developmental Disabilities Services (NASDDDS). This long-standing research project developed indicators as a quality assurance technique to be used by state developmental disability agencies in assessing the performance of public service systems. Data elements (i.e., core indicators) are collected across a variety of areas, including community participation, choice and decision making, safety, employment, relationships, and service coordination.
In the present study, we analyzed data from the NCI Adult Consumer Survey (ACS). This standardized interview involves a sample of individuals age 18 and over who are receiving at least one service in addition to case management. The ACS is conducted as a face-to-face, structured interview with adults with IDD who are receiving services. Background information is gathered from the person's records and includes demographics, employment data, and health status. Section I contains subjective items answered only by the person receiving services. Section II can use proxy respondents on items addressing community participation, choice, rights, and access to services. The survey has undergone multiple rounds of development and testing to strengthen its validity and reliability (HSRI & NADDDS, 2012). Interviewers are recruited through advocacy organizations, state staff, university students, or University Centers for Excellence in Developmental Disabilities (UCEDDs). All interviewers receive standardized training on all aspects of the ACS.
Participating states commit to completing a minimum of 400 ACS surveys, yielding a 95% confidence interval with +/− 5% margin of error. The sampling strategy enables generalization to the population of individuals with IDD receiving at least one publicly supported service beyond case management. In 2012 to 2013, the data cycle represented in this study, a total of 12,706 individuals across 24 states participated in the ACS. (Data collected from regional organization were excluded due to potential overlap with state data.)
We requested NCI Adult Consumer survey data for the 2012 to 2013 data cycle by following the official data request process outlined by HSRI. We requested data for religious service attendance, demographic and background information, employment, relationships, and health and wellness. In total, we received data on 181 variables for 12,706 individuals; invalid cases (i.e., the surveyor determined the individual receiving services did not understand questions or gave inconsistent responses; an entire section was not completed) were prescreened out prior to our receipt from HSRI. In 57.1% of all interviews, the Community Inclusion questions were answered directly by the individual with IDD; a proxy responded for all other interviews. The percentage of individual responses varied slightly across questions, ranging from 55.6% for errands/appointments to 58.3% for shopping. We included both individual and proxy responses to these questions in all of our analysis.
The sample for our analyses included 12,706 adults with IDD age 18 and older. The majority was male (58.0%) and the average age was 42.3 (SD = 14.8). The sample was predominantly White (70.9%), followed by Black or African American (20.1%), other races (3.6%; e.g., Asian, Pacific Islander, American Indian or Alaska Native), and multiple races (1.1%). Individuals identifying as Hispanic or Latino comprised 4.3% of our sample, and are treated as a mutually exclusive group. Among the 95.3% identified as having an intellectual disability, their level of disability was reported as being mild (36.5%), moderate (30.2%), severe (15.1%), profound (12.2%), or unspecified or unknown (6.0%). The primary language for most (98.0%) adults was English and 75.8% used spoken words as their primary means of expression. In terms of residential location, 4.5% lived in an institutional facility, 29.0% lived in a group home, 13.9% lived independently or with a roommate, 37.7% lived with family, and 14.9% lived in another context (e.g., foster home, homeless, nursing facility). Geographically, 29.0% lived in the East/Northeast, 22.1% lived in the Midwest, 33.1% lived in the South, and 15.8% lived in the West.
Our primary focus was on religious participation. Interviews asked, “In the past month, did you go out to a religious service or spiritual practice?” When the answer was yes, respondents were asked, “How many times in the last month did you go to religious services?” Thus, we calculated both the percentage of individuals who indicated any involvement as well as the total number of times they reported such involvement. In some cases, respondents reported attending religious services, but did not include the frequency.
We explored the extent to which religious participation varied based on a number of selected demographic and contextual factors included in the NCI. Gender was recorded as (a) male or (b) female. We categorized age as (a) younger than 30 years, (b) 30 to 44 years old, (c) 45 to 59 years old, and (d) older than 59 years. We categorized race as (a) Hispanic, (b) Black/African-American, (c) White, (d) multiple races, or (e) other. Because the NCI data asked race/ethnicity items as seven dichotomous race categories and one ethnicity category (Hispanic), we treated Hispanic as an exclusive category, and assigned the “Multiple Race” designation to any respondent that selected more than one race category, but did not select “Hispanic” for ethnicity. For every respondent identified as having an intellectual disability, we also noted whether their level of intellectual disability was described as (a) mild, (b) moderate, (c) severe, or (d) profound. We re-coded disability type as (a) autism spectrum disorder, (b) Down syndrome, (c) behavioral challenges (“mental illness/psychiatric diagnosis—behavioral challenges”), and (d) psychiatric disabilities (combining “mood disorder,” “anxiety disorder,” “psychotic disorder,” and “other psychiatric diagnosis”). Mobility was reported as (a) “Moves self around environment without aids,” (b) “Moves self around environment with aids or uses wheelchair independently,” and (c) “Non-ambulatory, always needs assistance to move around the environment.” We reported the need for behavioral supports in three areas: (a) self-injurious behavior, (b) disruptive behavior, and (c) destructive behavior. We dichotomously coded whether or not each adult required any support in each area. The language of focus adults was reported as (a) English or (b) other. We re-coded primary means of expression as (a) spoken or (b) “sign language/finger spelling,” (c) “communication aids/device,” and (d) “gestures/body language/other.” We recoded guardian status as (a) yes (combining “full” or “limited” guardianship) or (b) no. To summarize residential type, we recoded the 15 responses under the question “How would you characterize the place where this person lives?” into five categories: (a) institutional facility, (b) group home, (c) independent, (d) family, and (e) other. We grouped the 24 states participating in this cycle into four regions as an indicator of geographic locale: (a) East/Northeast, (b) Midwest, (c) South, and (d) West. For all items, the response of “don't know” was treated as missing data.
We used descriptive statistics to determine the frequency of religious attendance for the overall sample as well as to summarize findings based on selected individual and contextual factors. We then used chi-square tests of independence to compare the percentage of adults with IDD who attended religious activities at least once per month based on the following factors: gender, age, race, level of disability, degree of mobility, type of disability, behavioral support needs, primary language, communication mode, residential location, guardianship status, and geographic locale. For mutually exclusive categories, we compared categories to one another (e.g., males vs. females). For categories in which more than one variable could be selected (i.e., behavioral support needs, type of disability), we compared those exhibiting the characteristic to those who did not (e.g., adults with self-injury behavioral support needs versus those who do not have such needs). To compare avenues of community participation, we used difference of means tests.
Participation in Religious Activities
Less than half adults with IDD (48.3%) attended a religious services or spiritual practice at any point within the past month. Among those who had such participation, 12.6% attended one to two times per month and 34.6% went three or more times in the past month (M = 3.8 times per month, range, 1–40).
Factors Associated With Participation in Religious Activities
Table 1 displays variations in religious attendance based on various individual and contextual factors. No significant differences were found for the variables of primary language or guardianship status. The relation among attendance and gender, χ2 (1, N = 11,768) = 19.05, p < .001; age, χ2 (3, N = 11,876) = 14.42, p = .002; and race, χ2 (4, N = 11,670) = 14.42, p < .001, were significant. For example, African Americans with disabilities (60.1%) were significantly more likely to attend religious services than either White (43.9%) or Hispanic (47.4%) adults. Among those with intellectual disability, reported level of disability was associated with variations in religious participation, χ2 (3, N = 9,976) = 132.24, p < .001. The highest levels were found among adults with moderate intellectual disability (52.7%), followed by adults with mild intellectual disability (47.9%), severe intellectual disability (44.9%), and profound intellectual disability (33.9%). All differences were significant except when comparing adults with mild and severe intellectual disability. Among disability types, adults with Down syndrome (59.6%; χ2[1, N = 11,876] = 65.74, p < .001) were significantly more likely to attend than adults without Down syndrome, and adults with ASD (40.3%; χ2[1, N = 11,876] = 29.51, p < .001), behavioral challenges (40.6%; χ2[1, N = 11,876] = 34.18, p < .001), or psychiatric disabilities (42.9%; χ2[1, N = 11,876] = 49.43, p < .001) were significantly less likely to attend than individuals without those conditions. The relation among attendance and mobility was significant, χ2(2, N = 11,683) = 106.03, p < .001. Individuals needing supports in the areas of self-injurious behavior (39.2%; χ2[1, N = 11,464] = 86.08, p < .001), disruptive behavior (43.1%; χ2[1, N = 11,497] = 49.85, p < .001), and destructive behavior (40.3%; χ2[1, N = 11,472] = 70.92, p < .001) were significantly less likely to attend religious services than individuals without each of these support needs. The relation among attendance and communication mode was significant, χ2(3, N = 11,510) = 165.41, p < .001, indicating people who used mobility aids or were non-ambulatory were less likely to attend. Adults who did not have a formal means of communication (35.4%) were significantly less likely to attend than adults who relied on speech (50.4%), a communication aid/device (51.1%), or signing/finger-spelling (47.4%). Residential type accounted for some variation in attendance, χ2(4, N = 11,728) = 116.49, p < .001, ranging from 53.2% for adults living with family to 35.7% for adults living in institutional facilities. Finally, geographical regional differences were also apparent, χ2(3, N = 11,876) = 339.28, p < .001, ranging from 58.4% in Southern states to 47.6% in Western states, 42.7% in Midwestern states, and 37.7% in Eastern/Northeastern states.
Involvement in Other Community Activities
Across the entire sample, significant differences were apparent in the extent to which adults with IDD participated in various community activities. In this section, we report both the percentage of individuals attending each activity, as well as report findings from tests comparing frequency of attendance per month. Religious activity involvement in the prior month was significantly lower for adults with IDD than going out for exercise (58.7%, t[12,323] = 25.9, p < .01), going out for entertainment (71.3%, t[12,314] = 59.2, p < .01), going out to eat at a restaurant (84.9%, t[12,329] = 116.8, p <.01), and shopping (88.3%, t[12,401] = 142.4, p < .01). Table 2 displays variations in community participation during the prior month based on selected individual and contextual factors.
We also examined how involvement in other community activities varied based on whether adults with IDD had participated in a religious activity in the past month. Across all four other community activities, adults with IDD who had attended a religious activity were more likely to have also participated in each other community activity. Specifically, 93.2% of adults attending religious activities had also gone shopping compared to 83.7% of adults who had not attended religious activities, (t[12,042] = 16.3, p <. 01). Among adults attending religious activities, 90.8% had also eaten out at a restaurant compared to 79.5% of adults who had not attended, (t[11,994] = 17.6, p < .01). Among adults attending religious activities, 64.6% had also gone out to exercise compared to 52.8% of adults who had not attended, (t[11,980] = 13.2, p < .01). Finally, among adults attending religious activities, 78.4% had also gone out for entertainment compared to 64.3% of adults who had not attended, (t[11,971] = 17.2, p < .01).
Persons Accompanying Adults Within Community Activities
For those adults who reported religious involvement, we summarized who accompanied them to these activities. The majority were said to attend with friends or family (60.8%), followed by staff (39.3%), housemates/co-workers (16.6%), or others not listed (1.6%); 5.9% attended alone. More than one companion could be selected. For example, among adults attending with staff, 18.3% also listed friends and family, and 35.6% also listed housemates/coworkers.
Looking across other forms of community involvement addressed in the NCI, we found that adults with IDD were more likely to be accompanied by friends or family when attending religious activities (60.8%) than when they were shopping (47.3%, t[10,827] = 28.2, p < .01), going out to eat (52.1%, t[10,343] = 17.7, p < .01), going out for exercise (30.2%, t = 56.1, p < .01), or going out for entertainment (46.5%, t = 26.8, p < .01) .
Ensuring people with IDD flourish in the community requires careful consideration of multiple dimensions of community involvement. Although the importance of supporting spiritual expression has received growing attention within professional circles (Ault, 2010; Carter, 2013), relatively little is known about the extent to which congregational involvement has a prominent place in the lives of adults with IDD in the United States. We explored the place of religious activity involvement in the lives of a national sample of adults receiving services from state-funded agencies. These findings extend the literature in several important ways.
First, involvement in religious activities was an avenue for community involvement among a substantial number of adults with IDD. We found that almost half of adults with IDD were reported to have attended religious services within the past month, and over a third attended three or more times in the past month. Although direct comparisons cannot be made to other studies, national data on congregational involvement among people without disabilities do provide a helpful point of reference for situating these findings. For example, a recent National Organization on Disability (2010) survey indicated 57% of Americans attend a church, synagogue, or other place of worship at least once per month. Similarly, a recent Gallup (2014) survey identified monthly religious service attendance rates among the general public ranging from 64% in Utah to 28% in Vermont. The prominence of congregational involvement in the lives of adults with IDD is not altogether surprising in light of prior studies addressing the place of faith among people with disabilities (e.g., Liu et al., 2014; National Organization on Disability, 2004).
Second, we identified a number of factors associated with variations in this aspect of community life. Some of these factors were demographic in nature and mirrored national trends in the general population. For example, African Americans with IDD were more likely to attend religious services than individuals of other races. On other factors—such as gender and age—participation patterns did not vary widely. However, some disability-related factors did appear to play a more influential role in the area of religious service attendance. For example, individuals with severe or profound intellectual disability were much less likely to attend religious services than individuals with mild or moderate intellectual disability. Similar participation patterns were evident in the areas of mobility, behavioral support needs, and primary means of expression, whereby individuals with more extensive support needs were reported to have had more limited involvement. Although we cannot pinpoint the nature of those barriers from the NCI data set, it may be that mobility challenges are exacerbated by architectural barriers and the limited availability of transportation, behavioral challenges are more difficult to accommodate amidst the formality of many religious services, and cognitive impairments require more creativity when congregations rely so heavily on reading and understanding of the spoken word. From a Social Role Valorization perspective (Wolfensberger, 1983), the exclusion from faith communities of individuals with significant disabilities has both quality-of-life and theological implications (e.g., the presence of spiritual gifts within every person, ultimate questions of the meaning and purpose of life). At the same time, these data affirm that barriers to the involvement of individuals with the most extensive support needs are not insurmountable. Indeed, 45% of adults with severe disabilities and 34% of people with profound disabilities reported some participation.
Other influential factors, however, were more contextual. Consistent with studies of the general population (e.g., Gallup, 2014), we identified substantial regional variations in religious involvement. Adults with IDD living in the South reported higher rates of religious attendance (58.4%) than did adults living in other regions of the country (i.e., West, 47.6%; Midwest, 42.7%; East/Northeast, 37.7%). Similarly, the residential context in which adults with IDD live also was associated with variations in faith community involvement. Adults with IDD living with family members had greater involvement than adults living independently or in group homes, whereas adults living in institutions had the lowest attendance rates of all. Because families and friends were the most likely to accompany individuals with IDD to religious services, it is not surprising that individuals with IDD living with family members would have the highest rate of participation. Similarly, for those living in institutions, these supports may not be as readily present; indeed, individuals living in larger, congregate care settings have lower rates of participation across community activities (HSRI & NADDDS, 2015).
Third, involvement in religious activities was lower than all other areas of community involvement addressed within the NCI dataset. Part of this may reflect how services and plans of care are traditionally constructed for individuals with IDD, and the typical community activities (e.g., shopping, eating out, entertainment, health care appointments) for which agency support is provided. Yet individuals with disabilities, including those with significant disabilities, report their faith plays an important role in their lives (Liu et al., 2014; National Organization on Disability, 2004), and they do so at a rate comparable to all other Americans. If person-centered planning is indeed a hallmark of service quality, then the provision of supports to participate in a faith community of one's choice should carry the same weight and consideration as any other choice of importance for that person. Although available NCI data does not address the role of choice in its questions on congregational involvement, this is a critical consideration. Adults with IDD should have support to pursue the full range of community activity options that align with their personal interests, rather than having to select from a small subset of permitted activities or those for which staffing typically is provided.
Fourth, adults with IDD who attended religious services within the past month also tended to participate more frequently in other forms of community involvement (e.g., going out to eat, shopping, going out to exercise). This finding may reflect the fact that individuals who attend religious services also have fewer physical, cognitive, or behavioral limitations, as well as have greater access to supports and services than those individuals who do not attend religious services, and that these same variables also contribute to greater participation in other measures of community involvement. Yet, it might also reflect that the supports available to members of faith communities, as shared communities, may create opportunities for increased community participation across the other community measures. Clearly, further research is needed to tease out the extent to which membership in faith communities contributes to other forms of community participation for individuals with IDD.
Limitations and Future Research
Several limitations to this study highlight important areas of inquiry for future researchers. First, as with many studies involving adults with IDD, proxy reporting was used as an adjunct to or substitute for the direct answers of some adults. Specifically adults with IDD provided their own responses in 58% of all interviews, whereas persons who knew the adult well provided answers for all remaining participants. Although these proxies were asked to report on observable information, additional efforts are needed to identify pathways through which individuals with more extensive support needs and complex communication challenges can provide their own perspectives on studies addressing religious and spirituality.
Second, the NCI project does not include data on a comparative sample of adults without disabilities. Although broad comparisons can be made to national surveys addressing religious involvement among U.S. samples, the sampling procedures and measures are sufficiently different to make direct comparisons difficult. Absent a normative sample, we cannot speak to whether a “participation gap” exists between adults with and without IDD (cf., National Organization on Disability, 2010). Future studies are needed to explore the extent to which the presence of IDD predicts religious participation and, if so, why.
Third, the NCI project did not incorporate questions directly addressing the extent to which participating adults desire involvement in a faith community or consider it to be an important dimension of their lives. It is unclear whether decisions about congregational involvement were made by family members, staff, or individuals with IDD themselves. In other words, we cannot discern the extent to which there is a gap between desired and actual levels of religious attendance in this particular sample. As in many large-scale studies, a tradeoff was made between breadth and depth of coverage on any given topic. Although as many as 84% of adults with disabilities consider their faith to be somewhat or very important (National Organization on Disability, 2004), studies focused specifically on the salience of faith for adults with IDD are sorely needed.
Fourth, the NCI addresses only one context for spiritual and religious expression—religious service attendance. We cannot speak to the specific forms this involvement took, such as participation in worship service, involvement in adult religious education classes, contributions to service activities, participation in a small group, or attendance at social events (e.g., potluck suppers, celebrations). Nor can we address the satisfaction individuals had with this type and depth of involvement. Other qualitative studies have highlighted important aspects of spiritual expression that do not take place within formal religious services (e.g., Liu et al., 2014; Minton & Dodder, 2003). Future studies should look beyond attendance metrics and further explore the nature and quality of involvement in the breadth of activities that make up life in a faith community.
Fifth, our exploration of factors associated with religious attendance was limited primarily to personal variables within the NCI dataset. This constrained our ability to explore whether and how other factors beyond the person might impact faith community involvement, such as service system support (e.g., Carter, 2013; Hoeksema, 1995), family priorities (e.g., Ault, Collins, & Carter, 2013a; Boehm, Carter, & Taylor, 2015; Carter, Boehm, Annandale, & Taylor, in press), transportation availability (Carter, 2011), or congregational accessibility (e.g., Amado et al., 2012; LaRocque & Eigenbrood, 2005). Each of these factors warrants consideration in future research projects.
Implications for Practice
These findings have important implications at the intersection of supports and spirituality for individuals with IDD. First, service agencies must ensure adequate support is available to the nearly half (48%) of adults with IDD who reported at least some recent involvement in a religious community. Although position statements of several national organizations affirm the importance of supporting people with IDD well in the area of spiritual and religious expression (e.g., American Association on Intellectual and Developmental Disabilities/Arc, 2010; TASH, 2010), little attention has focused on equipping service providers to address these support needs in meaningful ways (Carter, 2013).
Second, very few (6%) of the individuals in this sample attended congregational activities alone, highlighting the importance of ensuring adults with IDD have the relationships and supports needed to maintain this aspect of community involvement. Families and friends were the most frequently named persons attending with the individual. Moreover, their involvement in this aspect of community participation was at a higher rate than their involvement in other areas of involvement with family and friends (e.g., going out to eat, shopping, going out to exercise). Although the NCI data do not address who these friends were (e.g., with or without disabilities) or where they were made (e.g., within or beyond the congregation), it is clear these relationships have a prominent place in this area of the lives of adults with IDD. Building upon these natural supports may be an important avenue through which service providers can support spirituality amidst challenging staffing patterns and limited supports.
Third, concurrent efforts may be needed to further build the capacity of congregations to invite and support the participation of adults with IDD in their community. Unlike schools and workplaces, no legal requirement exists to support inclusion in faith communities. Moreover, clergy often receive limited training in this area (Annandale & Carter, 2014; Kleinert, Sharrard, Vallance, Ricketts, & Farley, 2010) and many congregations still have barriers of architecture, awareness, and attitudes that could hinder the participation of people with IDD (Ault et al., 2013b; LaRocque & Eigenbrood, 2005). Professionals in the disability field could play an active role in equipping congregations with the information, resources, and/or guidance they need to support the participation of this segment of their community well.
Fourth, these findings emphasize the importance of ensuring there exists a meaningful avenue for addressing this aspect of community involvement within individual support plans. Efforts should be undertaken to ensure thoughtful questions about the importance of spiritual participation and supports within person-centered planning efforts. It is unclear whether the more limited or lack of involvement of some adults with IDD in this sample reflects their actual preferences, as well as what stands in the way of deeper involvement if it does not. Moreover, meaningful supports must be put in place to ensure adults who are actively involved in congregations are able to do so in ways and degrees that reflect their personal preferences. Doing this well likely requires providing the training and permission the direct support staff needs to support this area of participation and expression, just as they do for other aspects of community involvement (e.g., work, leisure, civic activities).
Finally, the more limited participation of persons with complex communication and mobility challenges suggests a need to reach out more broadly to all adults with IDD to ensure every interested person has opportunities to worship, learn, service, and fellowship within a caring community of faith. That faith community attendance may be impacted more by level or severity of disability than other forms of community participation (e.g., going out to eat, shopping) makes this discrepancy especially noteworthy.