Frontline Initiative: The Diverse Voices of Direct Support Professionals

In U.S. culture, religion and spirituality are often personal choices and they often stay private. Some of us grew up being told not to talk about religion and politics at public gatherings. The primary reason is that someone may disagree, which could lead to an argument, or someone being offended. Many people have the luxury of deciding when they want to share their personal beliefs and when they don’t. In other words, if someone does not rely on others for transportation or require support to participate in the community, then others don’t have to know what faith tradition they practice and where they attend religious services. They can keep that to themselves if they choose. Others do not have to be okay with them going to their spiritual gathering place; they just go. However, many of the people with disabilities who we support do not have the luxury of keeping things to themselves. If they want to attend a faith community, they have to communicate with those who support them to take them or arrange transportation. Throughout this process, there is a lot of room for direct support professionals (DSPs) to let their personal preferences or opinions get in the way of making that happen.

I have been doing DSP work for about 10 years. Now I am the spiritual support and volunteer coordinator for Stone Belt Arc in Bloomington, Indiana . I am like a chaplain, only instead of meeting people’s spiritual needs myself, I help connect the people we support to the faith community and/or spiritual practice that fits their wants and needs. This also means I help to educate and support congregations and community members about how they can be more hospitable, welcoming, and inclusive of people with disabilities. I have listened to DSPs, learning about their struggles, challenges, and barriers in supporting people in faith communities.

Cheyenne Schlegel and Allison Pak McKenny singing at worship service

Challenges in Providing Support in Faith Communities

First and foremost, there is a constant struggle for enough staff, especially Fridays through Sundays when most faith communities meet. It is so important that the people we support have freedom of choice in where they go and when. It means if two people living together practice different faiths, and only one DSP is available, it may mean that both people can’t attend their separate services. Or it means that we need to be creative in finding a way to support both people at different locations. I do not want to downplay this issue as I know we are dealing with chronic understaffing of DSPs throughout the country.

The second challenge I hear is how difficult it is to support a person who attends a faith/spiritual tradition that is different than yours. It can be a real challenge to sit and listen to something you may strongly disagree with. For some DSPs who have experienced trauma in a faith community, it is not easy to overcome or “not take personally.” This has led to some staff saying that this is the real reason they refuse to pick up shifts on Sundays (or other worship days). There is no easy answer here as I know the trauma is real and there isn’t a quick fix for this.

Some DSPs express that they aren’t pleased with the way the faith community treats the people DSPs support. At times that treatment is condescending, pity-focused, ignores the person, and so on . One example of this is when DSPs who support Donna said that they wanted Donna to change churches because the people there didn’t treat her well. They also didn’t like what was being preached each week. However, when I asked Donna what she wanted, it was very important to her that she continue to attend. The DSP really didn’t like this, but I had to remind them that Donna had over three generations of her own family who were buried in the cemetery at that church and had attended that church. For Donna, that was far more important. This can be hard for some of us to understand, as some of us don’t share the values of the people we support. Neither choice is wrong, but it’s individual for each person. This is why it’s important for each person to choose their faith community for themselves.

I could add to the complexity of the issues around transportation, and the struggles I hear and see from many DSPs. It is a struggle for many of us in direct care. So much so that I am doing my doctoral thesis on this topic to hopefully help this complex issue.

Schedule time to prepare yourself before entering the faith community of the person you support. Remind yourself who you are there for, and celebrate your choice in supporting someone else’s freedom to make that choice.

Some Recommendations for DSPs

I want to leave you all with some things to think about and some helpful tools.

1. First, I want to share this definition of spirituality with all of you, because it stresses the importance of empowerment. Empowerment is a person’s right and need to choose their own spiritual practices. Spirituality “can be defined in many ways but they all come back to whatever we experience as holy and sacred at the heart of life. It refers to a person’s felt connection with self, with others, with God (however God is defined), with nature, with place, with past, and with culture. Spirituality also has to do with choice, exercising free will and decision making, responding to the sense of call, vocation, and purpose we feel in our lives.” ~ Bill Gaventa, MDiv
2. The next tip I use often. I remind myself that this isn’t about me. This is about the person’s right to make a choice, their freedom to disagree with me and others, and my job to support them without judgment. While I may not share their beliefs, I celebrate their freedom to make those decisions for themselves. I find this directive very freeing, as it reminds me of my role as a supporter, not the driver of the person’s life.
3. You may not need to be present in the actual worship service. Instead, try to find a bench or seat outside the worship space and let the person know where you are.
4. Schedule time to prepare yourself before entering the faith community of the person you support. Remind yourself who you are there for and celebrate your choice in supporting someone else’s freedom to make that choice. You may even try to view the experience as strictly educational and listen with a more scholarly view. This may help with not taking things to heart.
5. See if other congregation members will sit with the person you support at events. You may also ask members from the person’s faith community to help with transportation and support. Not only does this help by not having to provide a DSP during that time, but the person is now building important relationships with their fellow congregation members. At Stone Belt Arc, we call them “spiritual companions.”

There are resources where you can learn more about providing support for people in a way that is consistent with what is important to the person you support. I provided some books, links to webinars, and a few websites. The National Alliance of Direct Support Professionals (NADSP) is also developing an E-Badge in Faith and Spirituality as a part of the NADSP E-Badge Academy . Look for this soon-to-be released opportunity. You can also get involved in the American Association of Intellectual and Developmental Disabilities’ Religion and Spirituality Special Interest Network . You can email us at info@aaiddreligion.org.

Finally, we at Stone Belt are hosting a webinar on September 15, 2022 entitled, Faith and Disability: Strategies for Helping Congregations Move from Exclusion to Embrace with Erik Carter, PhD. This webinar will address practical strategies and resources that direct support professionals, parents, and individuals can use to promote greater access and acceptance within area congregations.

Resources

Harris Lord, J., Hook, M., English, S.J., &Alkhateeb, S. (2008). Spiritually Sensitive Caregiving: A Multi-Faith Handbook. Compassion Press.

Matlins, S.M., & Magida. , S.J. (Eds.). (2015). How to Be a Perfect Stranger: The Essential Religious Etiquette Handbook. Skylight Paths Publishing.

Matlins, S.M. (Ed.) (2005). The Perfect Stranger’s Guide to Funerals and Grieving Practices: A Guide to Etiquette in Other People’s Religious Ceremonies. Skylight Paths Publishing.

NADSP E-Badge Academy E-Badge in Faith and Spirituality. https://ebadge.nadsp.org/

When Hospitality & Belonging Becomes Hard: Faith Community Strategies for Responding to Adults with Varying Needs

Faith and Disability: Strategies for Helping Congregations Move from Exclusion to Embrace with Erik Carter, PhD. Hosted By Stone Belt. September 15, 2022

Stone Belt Arc. Spiritual Support Program

For more information on the American Association on Intellectual and Developmental Disabilities: Religion and Spirituality Interest Network contact info@aaiddreligion.org