Program Profile

Impact Feature Issue on Faith Communities and Persons with Developmental Disabilities

Incorporating Spiritual Supports Into Residential Services:
The PSCH Model


Terry Gleeson is Quality Assurance Director for PSCH, Inc., College Point, New York

Years ago, a colleague of mine wondered aloud how many of the people with disabilities whom our agency serves attended religious services regularly when they lived at home with their parents, but stopped after they moved into “the system.” PSCH, Inc. operates more than 20 residences for persons with developmental disabilities, as well as day treatment centers, a clinic, and service coordination in New York state. The question remained in the back of my mind. I was reminded of it whenever I read reports in studies and magazines about the beneficial effects of faith on people’s physical and psychological health, and when I saw a documentary on the low incidence of dementia symptoms among some groups of nuns. In recent years, an enormous amount of research seems to indicate that people live longer, deal with stress and crises better, and experience a greater sense of meaning and purpose in their lives when they have some degree of religious faith, and belong to some sort of religious community. If faith and worship could enhance quality of life, shouldn’t it be part of our delivery of quality services?

At first glance, the idea seemed ridiculous: how could a completely secular, nonprofit organization get involved in such a deeply personal and private part of people’s lives? How could my quality assurance department rationalize this form of advocacy? How could I, as a quality assurance director, justify to the board of directors and the executive director this use of resources? I knew that whatever the answers, they would have to be grounded in the language and principles of the field of developmental disabilities: I couldn’t talk theology, only philosophy. I had to avoid the subjective and anecdotal, and concentrate on the objective and empirical. Surprisingly, the answers were not difficult to find, and emerged from three main sources.

Firstly, in New York state we are very familiar with the principles known as the 3I’s&P – that is, we strive to enhance people’s Inclusion, Individualization, Independence, and Productivity. As an agency, we teach these principles at staff orientation, we include them in our policies and procedures and our staff evaluations, and we particularly train our clinical staff to incorporate these principles in their work. It occurred to me that probably there was no better instance of inclusion and individualization than connecting a person to a worshiping community in that most faith communities are committed not only to welcoming strangers and newcomers, but also to seeing beyond those characteristics that tend to stigmatize people with disabilities in broader society. Individuals with disabilities might experience a much higher level of acceptance and integration in a worshipping community than elsewhere. Further, if faith is such a personal, individual phenomenon, then the expression of that faith could be seen as a radical form of individualization: when people choose to participate in a worshiping community, they make a public statement about their deepest selves.

Secondly, the process of person-centered planning not only pursues the same goals of inclusion and individualization, but it envisages creating quality relationships between persons with disabilities and people in the broader community. Ideally, these circles of support not only enrich people’s lives, but may also provide another layer of protection and advocacy. Once again, it seemed worshiping communities might reasonably be expected to provide possibilities for trusting friendship and advocacy.

Thirdly, our agency was vigorously pursuing self-advocacy programs for the individuals we served and training for staff, and even the briefest exposure to a self-advocacy program sensitizes people to the broad issue of consumer rights. Now on the list of rights that we hand to every person at admission, and to all staff during their orientation, it states that every person has the right to “observe and participate in the religion of their choice.” Surely, as service providers, our responsibility did not end with simply informing people of their rights, but had to extend to protecting and promoting those rights, and facilitating their exercise.

When I absorbed all these fragments of information, it seemed to me that if we are genuinely working for an optimal lifestyle for people with disabilities, then we should be doing everything we can to facilitate their inclusion in worshipping communities, and that certainly we could no longer pretend that this was not important. The strategies that we adopted subsequently changed the face of our agency. Five years ago, a handful of those we served attended worship services, and only then because they were taken by family members; currently, more than half attend worship services with some regularity, and most of them are taken by staff.

In analyzing how this was accomplished, I think that one of the most important elements was that the agency’s administration communicated with one another and trusted one another. We could have achieved very little, if anything, if senior management was not a well-functioning team who listened to each other, and respected and supported each other. One of the significant features of this transformation was that it was accomplished by a relatively small group of people.

Nowhere was the power of this small group more apparent than in the area of staff training. The first area that we looked at was staff orientation, where staff were first introduced to the 3I’s&P and the concept of normalization; consequently, training materials were rewritten and trainers instructed to use participation in worshipping communities as an excellent example of inclusion and individualization. Similarly, self-advocacy training for individuals with disabilities and staff focused on the right to worship, and our internal auditors were instructed to inquire specifically of staff and those we serve about how this right was being protected. Residence managers were briefed at meetings, not only on the need to offer the option of attending worship, but also on ensuring that staff and transportation were available where required. The effect of this focused training was rapidly apparent: New staff arriving at their first assignment began asking why those they were serving were not going to church or synagogue. New managers just presumed it was normal to take people to worship and did so. Experienced staff who had wanted to take individuals to worship in the past, but did not feel that was permissible, now felt able to assert themselves. And, individuals with disabilities, returning from worship, began telling others about their experiences, sometimes even playing tapes and teaching them hymns. Within months, the number of individuals we serve who were participating in worship rose dramatically.

However, one of the difficulties of this initial success was translating it into more or less permanent structures. How could we sustain this phenomenon when management changed, staff were transferred or moved on to other jobs, or service recipients moved on to less restrictive environments? A number of tasks recommended themselves:

  • It is a simple assignment to establish, in the admission package, not only what an individual’s religion is, but also their current pattern of worship. We found that prior to their admission, a number of people were accustomed to weekly, even daily, services of some kind, and no continuity had been established. This not only deprived them of their customary spiritual supports, but also the support of the communities in which they had participated.
  • An agency’s policies and procedures can be rewritten to acknowledge the importance of each person’s spiritual life and to provide continuity in each individual’s pattern of religious worship, consistent with their right to choose. Further, the policies can remind staff of each individual’s human and civil rights to worship in the religion of their choice.
  • An agency’s database can be developed to identify those individuals who are particularly vulnerable to being excluded from worship opportunities, a sort of spiritual risk assessment tool. Our experience revealed that those least likely to participate in worship communities were those with infrequent family contact, limited ability to communicate and to ambulate, and greater support needs.

The response from clergy and congregations has ranged from unremarkable to excellent. Prior planning and discussion has eliminated some problems with wheelchair accessibility, special arrangements, and participation. However, one dimension of this initiative remains problematic: How much of a church’s or synagogue’s instruction and worship are truly accessible to persons with intellectual disabilities? Mary Therese Harrington, inA Place for All: Mental Retardation, Catechesis & Liturgy, comments “Catechesis [religious instruction] without liturgy [worship] is dry and suffocating. Liturgy without catechesis is asked to carry more than it can bear.” Agencies can strive to deliver people to the door of the church or synagogue, but they cannot form and educate people in their faith; they cannot design developmentally appropriate services; they cannot ensure that people’s experiences are reflected upon and then connected to the lessons of Scripture, the cycle of the seasons, the lives of holy men and women, and the dynamics of the liturgy. It is precisely in this problematic area that worship emerges as a community responsibility in which everyone has to play their part. Agencies have to learn to value and promote the spiritual well-being of individuals who use their services, they have to pursue inclusion and individualization, and facilitate genuine relationships between people with disabilities and the broader community. However, there must also be people and places to welcome the vulnerable when they arrive, to greet them with respect and lead them by the hand to a place of honor, and to genuinely minister to their needs.