The complete title of Erik Carter's Monday Morning presentation at the 2012 Summer Institute on Theology and Disability was What Matters Most: Families, Disabilities, and Compelling Congregational Supports. He shared research he is doing on practices of faith communities and the importance of congregational supports for youth with disabilities. Later in the week Eric lead a discussion meaningful markers that indicate a congregation is doing a god job of welcoming individuals with disabilities.

Research Project on Congregational Supports for Youth with Disabilities

People with development disabilities are often not very known or understood.  The problem: professionals sometimes wonder if it is their role to support people with disabilities in this dimension of their lives and many congregation leaders struggle to provide needed welcome and support.  Some background on the Strengths, Spirituality, and Well-Being Among Young People with Autism or Intellectual Disabilities Project:

• 6 million people have the label of developmental disability in the United States (approximately 3%).
• 30% of all families have a member of their immediate family or a relative who has a developmental disability.
 
• Developmental disabilities cuts across every demographic group.

Although people with developmental disabilities have the right to attend public school, they do not necessarily have the right to worship on Sunday.  People in this group may exhibit challenging behavior and the presence of those behaviors often impacts the worship experience.  Using an assessment scale for positive strengths, the study works with individuals and families to identify strengths and gifts. It is important to focus on gifts- we often introduce people with disabilities based on their deficits and how we introduce people really matters.  Consider the difference: 

• Jake would like to attend your congregation, but has autism and will needs some people to sit with him all of the time.
• Jake is a new member of your congregation, he'll fit in well with the others in his youth group and is great at remembering names.

Help people see gifts and strengths first! There is also a need to look at spirituality both within and without a congregation- both public (worship services, Bible study and private (prayer, scripture study) experiences.   What kind of supports do families need? In general physical accessibility is the least important need that families express. Consider other ways to support a family such as disability awareness, having an advocate in the congregation or sponsoring a support group. 

Meaningful Congregational Markers

Later in the week, I sat in on a breakout session with Erik where he led on a discussion on identifying markers of welcoming congregations. Erik began by citing a study that showed among 400 families, 33% had changed their place of worship because of lack of accessibility. If we are trying to creating inclusive and belonging congregations it is helpful to understand what we are talking about, what are the indicators that any congregation is welcoming? It is also important to note that there are differences in welcoming indicators for different group of people- consider the needs of members with a specific disability or families in different circumstances. Erik outlined 6 factors on current practices:

• Parent advocacy
• Professional advocacy
• Legislation
• Litigation
• Self-advocacy
• Research

While some people expressed concern that it is hard to measure "welcoming", some of the ideas that people had to measure inclusion, included:

• Was a person missed when absent? Does someone check in if they are gone?
• Authentic relationships (that include going through hard times together/arguing).
• A person to call when in need?
• A person that you can call a friend who is a peer.

Specialized Programs

My favorite part of this discussion was the place for specialized activities in a congregation. While a special class or program for members with disabilities may indicate awareness of disability, there are significant issues from segregating people with disabilities. The feelings of the group seemed to be mixed as to whether specialized programs were needed. I think that there was a general acknowledgement that the focus should be on inclusion, although some in the room seemed to feel that there is value in providing a supplementary experience that is specialized for members with disabilities and their families. While I agree that specialized ministry experiences may provide experiences that are helpful to individuals and families, it is important to also note that there are concerns around these programs. For example, by definition specialized programs are separate and apart from the main body of the congregation, even if they exist in the same building. While some programs operate on a reverse mainstream or peer-supported model, a specialized congregation always denotes a sense of 'otherness'. If you do feel like there is a need to create a specialized ministry experiences in your congregation, be careful of assuming disability is or should be someone's primary identity.

Summary

It was evident that there is a tremendous amount of potential to increase our understanding of what kinds of things a congregation can do to be more welcoming to individuals with disabilities and families who have a member with a disability. While it can be challenging to quantify and measuring aspects of congregational life that indicate welcoming and belong, Eric is leading an effort to do exactly that.