Feature Issue on Loneliness and People with Intellectual, Developmental, and Other Disabilities

Faith communities can foster organic, mutual friendships and connections that can reduce loneliness among people with and without disabilities.

Stone Belt Arc created its Spiritual Support Program in 2017 to support the spiritual needs of people with intellectual and/or developmental disabilities (IDD) in Bloomington, Columbus, and Bedford, Indiana. An Indiana Bureau of Disability Services grant about five years later created the opportunity expand our concept and create a replicable model that we hope will become a Medicaid waiver or other financially supported service.

The program, a replicable model, offers four services: death and non-death grief support; end-of-life support; spiritual engagement; and Building Belonging, a cohort-style program for faith communities to learn more about disability inclusion.

Zie Hoagland (left), a spiritual engagement coach, and Jeff Strauser presented together at the Spiritual Engagement Celebration, a public event.

The spiritual engagement service supports people to explore and fulfill their spiritual health needs, including connectedness, belonging, love, reciprocal friendships, value, purpose, joy, and hope. Spiritual engagement coaches meet individually with participants to explore their own spirituality, what is most meaningful in their lives, what is missing, and/or spiritual goals. Then they discover what is in their community that might match their spiritual needs. Once they connect with a club, faith community, or group of people, they work on building relationships. Eventually, the goal is to fade out the support of the spiritual engagement coach and empower natural support wherever possible. A direct support professional (DSP) may still need to be present, so the spiritual engagement coach works with the DSP on strategies for providing support without interfering with these new relationships. The spiritual engagement coach does not fully close out the service until there is a plan for long term communication between the individual, their support team, and the natural supports. All of this is then put into a spiritual support plan and added to their person-centered-planning paperwork to ensure long term support, consistency, and communication if plans change. A chaplain, social worker, or other clinical professional provides supervision to the spiritual engagement coaches.

After piloting this service with two coaches and 16 participants, a follow-up survey of participants and their support teams revealed very strong results. Coaching support was mostly or fully faded out for 14 of the 16 participants.

Previously, to experience social opportunities, these participants had to know what they wanted, communicate what they wanted, have staff available to get there, and have staff follow through with their wishes. It may seem like this is the way it should be, but there are various aspects of this process that routinely break down. If a person does not know what their options are or have an opportunity to try things out, they may not know what they want. They may not have been asked, or they may have made requests and been told there is not enough staff to get them to the book club or other activity. Over time, they likely stop asking. This program, by contrast, is centered around the individual: who they are, what they want for themselves, what they believe, and how they want to find a connection in their community and beyond.

Much of our work is built around the concept of the Belonging Wheel, created by Erik Carter, which outlines the process of belonging (see Carter’s article elsewhere in this issue). This pilot continues to prove his model to be true. When we thoughtfully and intentionally foster mutually beneficial relationships, we not only increase belonging for everyone involved, but we also decrease loneliness in the most real, authentic, and meaningful way.

The opportunities this program has brought our communities have been significant, and there have also been challenges. Tight-knit faith communities have traditions that can be challenging to change, even for the purpose of inclusion. They often need extra support, education, and resources. Performing my doctoral thesis research, I found that while congregations are often reluctant to offer transportation or other natural support to someone new to their congregation, they do enthusiastically jump in if the individual is considered a needed and loved member of the community. This program has also allowed the time and space to be the bridge and foster meaningful relationships that lead to full access and belonging.

The spiritual engagement coaches are trained to support congregations to think in terms of the “How” model. Rather than asking someone with a disability if they can do something, such as lighting the candles for worship, congregants are encouraged to ask how they can support the person to do the task. This changes the conversation from terms of restriction and access to more open, inclusive language. It eliminates the power dynamic and opens possibility, creativity, and belonging. Now the individual can share with you what support they need, allowing for creative solutions.

Or perhaps someone wants to help lead worship, and asks to read scripture, but they can’t read. Again, ask how, and be creative. One solution might be to have a support person stand behind, telling them a few words at a time that can be repeated into the microphone. If the individual doesn’t use words to communicate, another creative solution might be having them press a button to play a scripture recording. This way, they are still participating and leading congregants through the service.

While there are many strategies, tools, and resources congregations can use to be more inclusive, the best strategy is to get to know the individual for who they are. Instead of making assumptions, especially about their limitations, learn about their goals for life, their gifts and passions, and how they experience God in their life. If you focus on who they are as a person, the inclusion will happen. This does not mean ignore their disability or deny that someone has limitations, it means that every person is not solely defined by our limitations and we all have gifts and wisdom to share.

Remember the belonging wheel. Exclusion is when you are not listening to the person, not learning about them, not seeing them as a needed and valuable member of the congregation. The goal of belonging is a mutual relationship with others that isn’t one-directional but recognizes that both people are needed and have something to contribute. This means belonging is really a wonderfully beautiful opportunity to learn how each person can make their unique contribution in the community.