Posted on April 2, 2024

The fulfillment, wholeness, and connection that people experience through spirituality is universal. For people with intellectual and developmental disabilities (IDD) who receive services, perceptions and attitudes about their spirituality, ways they engage with faith communities, and what supports they need to strengthen their spirituality often present challenges.

To address these topics and more, we turned to leading experts engaged in facilitating access to spirituality, faith, and/or religion in the lives of people with disabilities who are members of AAIDD’s Religion and Spirituality Interest Network:

• Erik Carter | Executive Director, Baylor Center for Developmental Disabilities
• Sharon Coutryer, PhD | Executive Director, STARS Family Services
• Deborah Fisher, Psy.D. | Psychologist, Deborah Fisher Consulting
• Anne Masters, PhD, FAAIDD | Director, Office for Pastoral Ministry with Persons with Disabilities, Archdiocese of Newark
• Diane Sturmer | Community Bridge Builder, Faith Community Inclusion team member

In this Capstone, these experts first help us better understand spirituality, including what it is and why it’s so essential for people’s quality of life. Then, they identify some common barriers that often arise in supporting spirituality, as well as some best practices for provider organizations, faith communities, and other stakeholders. Finally, we offer a variety of tools, research, articles, and more that can help you in supporting people’s spiritual journey.

Defining Spirituality

The experts shared some valuable insights into what spirituality is. They described it in a variety of ways including the connectedness of a person to a power that is ‘bigger’ than they, a search for deeper understanding, and the pursuit of one’s place in the world – to list a few. Dr. Sharon Coutryer captured this by saying “it is a belief or sense that there is something greater than oneself that is divine in nature. It is a search for meaning and purpose in one’s life.”

Deborah Fisher summarized it as “spirituality is the process through which a person experiences a sense of who they are in the context of the natural, social, existential, and physical world around them. It may or may not include a religious faith or belief system.” 

Providing more perspective on the relationship between religion and spirituality, Erik Carter adds that “religion is a common context within which spirituality is explored and expressed, but it is not the only context. It can also be expressed through meditation, prayer, connection with nature or people, creative acts, service to others, and an abundance of other personalized practices.”

Importance of Supporting Spirituality

Spirituality can play a critical role in people’s lives, so supports and services need to be reflective of that. Diane Sturmer says that “all of us have a soul that needs to be nourished. The gifts of all people need to be shared so we can all grow.” Anne Masters builds off of what Diane described, stating “the importance of spirituality within a holistic framework of human health and wholeness is well documented. Therefore, not supporting this dimension of persons with disabilities or inhibiting it, undermines a person’s potential for health and wholeness. It dismisses a rich potential for human relationships and community participation in valued roles and growth.”

Digging deeper into the impact of spirituality on overall quality of life, Erik Carter highlights that “research studies consistently show that spirituality can make significant contributions to quality of life and flourishing among adolescents and adults with IDD. Spirituality often intersects with so many other quality of life domains, such as employment (e.g., living out one’s vocation or calling), social relationships (e.g., developing friendships within a religious community), community inclusion (e.g., taking part in activities within and through one’s religious community), mental health (e.g., accessing emotional support and spiritual counseling), and self-determination (e.g., making and acting on personal decisions).”

While spirituality can play an important part to a rich and fulfilling life, there are often unique issues and barriers involving spirituality in the lives of those with IDD who receive services.

Challenges In Supporting Spirituality

The contributors to this Capstone listed a number of potential difficulties that human services organizations, families, friends, faith communities, and other stakeholders may encounter when supporting people with IDD in embracing their spirituality.

Erik Carter

• The more subjective aspects of spirituality — such as the beliefs people hold, their experiences of the divine, and their sense of calling — can be more difficult to discern or express when someone experiences complex communication challenges or cognitive impairments.
• Direct support staff may feel reluctant or even resistant to arranging support or partnerships related to religion.
• Faith community leaders and members often feel ill-equipped to invite and embrace people with IDD into the full life of their congregation.

Taken together, the spiritual lives of people with IDD are often overlooked or poorly supported.

Sharon Coutryer

It’s finding the time or putting the time aside and making it a priority! With so many activities to focus on during the day, we tend to lose sight of those activities that may be fundamentally the most important thing an individual with IDD would benefit from.

Deborah Fisher

• Family expectations may differ from the person’s own interests.
• DSPs may have different spiritual or religious beliefs which they may find difficult to set aside in the effort to support someone else’s spiritual belief.
• For people whose religious or spiritual beliefs are not within the mainstream, there may need to be more effort involved with finding communities or opportunities for that person.
• DSP schedules may interfere with the times that faith or spiritual communities’ activities occur.
• Spiritual communities may not be accessible or able to accommodate a particular person’s needs.

Anne Masters

• A tendency of people without disabilities to focus on cognitive aspects of faith traditions, rather than the interior orientations these refer to.
• Discomfort of administrators or care staff with religion and spirituality can interfere with their comfort or confidence in their ability to do so.
• Inaccessible spaces, practices, communication, and devaluing attitudes about persons with disabilities can inhibit participation in a faith community and faith motivated citizen activism.

Strategies for Promoting Spirituality

Erik Carter

Several practices can help ensure the spiritual preferences and priorities of people with IDD are honored:

• People with IDD should receive the opportunities, encouragement, instruction, and assistance they need to explore and express the spiritual aspects of their lives.
• Staff should strive to understand the preferences and priorities of people with IDD related to spirituality, which requires careful listening, observing, and question asking.
• Staff can play a key role in identifying, arranging, and/or providing the support people with IDD need in this aspect of their lives.
• Agencies should reflect on their policies related to spirituality, provide any needed training to their staff, explore partnerships with faith-based organizations, and ensure that spirituality is considered within person-focused planning whenever appropriate.

Deborah Fisher

As with all other efforts to support a person with IDD, best practices involve starting with the person:

• Ask them what (or if) they have historically participated in spiritual practices or communities. If so, where and when? Have them provide as much detail about that.
• Ask them to describe whether they would like to continue to have those experiences and opportunities. If so, where, when, with whom?
• If they have not participated in the past, would they like to pursue those now? Note: staff must be careful to maintain clear boundaries between their own spiritual/faith/beliefs and exploring these preferences with the person.
• Together with the person and friends or family, explore what is available, when, and establish a process for facilitating access. This process may require staff learning about different faith/spiritual communities, expectations about those, as well as helping the person advocate within the communities, with lay and professional leaders, about accommodations.

Anne Masters

It is probably simpler if the person already belongs to a particular faith tradition, because at its core, spirituality is about connectedness with other people, community participation, and a sense of something beyond oneself, even if one doesn’t believe in God. Presuming this:

• Begin with participating in different areas of congregational life: worship, fellowship, social justice, education in the faith, etc.
• Identify social roles for the person to fill based on their interests and capacities, with an expectation for further developments.
• Identify people in the community to help with this, known possibly as sponsors, mentors, or partners.
• Education about the faith should grow out of these experiences and be shared based on how the person learns and communicates. It’d be great if this could happen within a mixed context, folks with and without disabilities learning together.

Diane Sturmer

For the person directly working with the individual with IDD, they need to:

• Be a listening ear and a heart that cares about the soul of the person. 
• Give the person opportunity to connect and participate in a faith community of their choice.

For the faith community, they need to:

• Examine their own feelings and thoughts about the person.
• See a person as a person and think about ways that the faith community can work alongside the person together for a greater purpose. (Not for, but with)

Additional Resources About Spirituality

We are happy to share a number of resources that were passed along by our experts, which link to tools that will help you better understand and support spirituality in people’s lives. Please note that even if certain resources were developed for a specific faith tradition, the concepts can be applied more universally.

• AAIDD Religion and Spirituality Interest Network
• Spirituality, Disability, and Quality of Life
• Collaborative on Faith & Disabilities
• Welcoming People with Developmental Disabilities and Their Families: A Practical Guide for Congregations
• Faith Inclusion Network
• Putting Faith To Work: A Guide for Congregations  and Communities
• Larger Table: Reflections at the Crossroads of Faith and Disability
• The Office for Pastoral Ministry with Persons with Disabilities, Archdiocese of Newark
• STARS – Disability Ministry at College Church
• Webinar: Spirituality & Physical/Mental Health