Supporting Congregational Inclusion for Children and Youth with Disabilities and Their Families

By Carter, Erik W.; Boehm, Thomas L. et al. | Exceptional Children, April 2016 | Go to article overview

Supporting Congregational Inclusion for Children and Youth with Disabilities and Their Families


Carter, Erik W., Boehm, Thomas L., Annandale, Naomi H., Taylor, Courtney E., Exceptional Children


Supporting full participation in all aspects of life has been a long-standing focus of policy and practice for young people with disabilities and their families. Indeed, the Individuals with Disabilities Education Act (IDEA; 2006) considers special education to be "an essential element of our national policy of ensuring equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities" (20 USC [section] 1400[c][l]). Although considerable attention has concentrated on the educational, vocational, and residential needs of children and youth, much less is known about supporting the presence and participation of young people with intellectual and developmental disabilities (1DD) and their families in congregational life. Recent studies affirm that congregational involvement and spiritual expression can hold considerable importance in the lives of people with IDD, just as they do for people without disabilities (e.g., Lifshitz, Weiss, Fridel, & Glaubman, 2009; Liu, Carter, Boehm, Annandale, & Taylor, 2014; National Organization on Disability, 2010). Similarly, studies focused on parents with sons or daughters with IDD have highlighted the salience of faith and congregational connections for these families (Brown, Anand, Fung, Isaacs, & Baum, 2003; Poston & Turnbull, 2004). For example, Boehm, Carter, and Taylor (2015) found that strength of religious faith was among the most prominent predictors of family quality of life as reported by parents of youth and young adults with IDD. Other studies have also documented strong linkages among indicators of congregational involvement and family well-being (e.g., Lustig, 2002; Minnes, 1998; Rogers-Dulan, 1998; Tarakeshwar & Pargament, 2001).

Although several national organizations have crafted strong statements upholding spiritual expression as a human right and asserting the importance of supporting people with disabilities well in this aspect of life (e.g., American Association on Intellectual and Developmental Disabilities/The Arc, 2010; TASH, 2010), the scholarly literature provides few insights into what it might look like to support congregational inclusion well (Ault, 2010). For the more than 335,000 congregations across the United States, myriad questions remain about how best to support the presence and participation of young people with IDD and their families within the life of a faith community. Ault, Collins, and Carter (2013) found that 56% of parents of children with disabilities in their study had kept their children from participating in a religious activity because support was not provided and 32% of parents said they changed their place of worship because their child was not included or welcomed. Potential supports that may be valued by these families include respite care, spiritual counseling, individualized supports within worship services and religious education, and programmatic adaptations and accessibility (e.g., Ault, 2010; Ault et al., 2013; Griffin, Kane, Taylor, Francis, & Hodapp, 2012; Jacober, 2010). Given the considerable diversity among these families as well as the multifaceted strengths and needs of children with IDD, it is likely that parents hold varied views regarding which supports would be most helpful to them. Research addressing how parents view and prioritize such congregational supports could provide valuable guidance to congregations striving to welcome this segment of their community effectively. Additional research is also needed to explore those child- and family-level factors that may be associated with how parents perceive the value of various congregational supports.

Although relatively little research has focused on the extent to which congregations are supporting people with disabilities and their families, available studies suggest the welcome of faith communities has been somewhat uneven (e.g., Amado, Degrande, Boice, & Hutcheson, 2012; Ault et al. …

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