Community Responses to Adults with Developmental Disabilities

by Anthony Jang '15, Sandra Yan '14.5, Dipal Nagda '17
December 16, 2014

Anthony, Sandra, and Dipal are community fellows for Partnership for Adult Learning (PAL), an organization that promotes partnerships between Brown students and adults with developmental disabilities in Rhode Island. 

The Swearer Center’s Partnership for Adult Learning (PAL) pairs Brown student tutors with adults with developmental disabilities in Rhode Island. In conjunction with Writers’ Group - another Swearer Center program that provides creative writing workshops to adults with developmental disabilities - we convened a panel on Sunday, November 16th to explore topics related to the lives of adults with developmental disabilities. PAL works primarily in a one-on-one setting, in which the tutor-learner pair explores a topic of interest to the learner. For example, previous pairs have worked on skills such as math, reading, Braille, and computer skills, while others have worked on learning about elections and volcanoes.

However, we have noticed that due to this one-on-one structure, many of us can easily fall into the pattern of meeting with our learners, writing notes about sessions, and preparing sessions in very specific ways. While this set of individual connections is important, we risk losing sight of the broader issues and contexts affecting our learners’ ongoing lives.

We recognize the importance of being aware of the lives of our learners outside the Brown classrooms; this awareness encompasses an understanding of the impact of current medical/community healthcare systems, as well as general societal perspectives and assumptions about adults with developmental disorders. To that end, the panel - which consisted of family members, healthcare professionals, and social workers - addressed topics and questions posed by Brown tutors. These included typical challenges caregivers face while working with adults with developmental disabilities, institutions that exist in Rhode Island to support these adults, and suggestions and advice for us, as tutors.

Through our discussion, we learned that programs such as PAL and Writers’ Group may help address a common issue faced by adults with developmental disabilities - isolation. Many of our panelists stressed how deinstitutionalization (the idea of shifting healthcare out of hospitals to the community) has not been as effective as hoped. Many people with developmental disabilities today are cared for by a small number of professional care workers in group homes or community health centers. Dr. and Mrs. Susa, parents of a son who has a developmental disorder, noted that they and other parents worry about long term care for their adult children with developmental disorders. Because of a high incidence of turnover in the field, group homes and community health centers face a challenge when providing a continuity of care to adults with DD over a long period of time. Thus, one of the most important things that PAL can do is facilitate relationships of friendship and trust with our learners. From the panel, we learned that programs such as PAL and Writers’ Group allow adults to form connections within their community outside of group home settings, encouraging them to meet students, learn new things, and engage in creative activities.

We also learned that there are multiple ways in which stigma can affect how we interact with people with developmental disabilities. For example, Kerri Lynch, an occupational therapist at Butler Hospital, noted that when those without disabilities make mistakes or act out in negative ways, one might attribute such outbursts to a “bad day” or being rude “in the moment.” When someone with a developmental disability has a bad day, that same bad day is translated into that person having a “behavioral” issue directly related to their disability, instead of attributing it to their unique personality. We learned that these attitudes toward adults with developmental disorders can easily be overlooked, and that we should be aware that we may be unconsciously perpetuating these stigmas.

Listening to professionals who have worked with this community for years was an insightful and humbling experience for us. They have reminded us that while our work with adults with developmental disabilities may seem insignificant compared to those who devote their whole lives to it, we are making a valuable contribution within a system that may otherwise not provide enough opportunities for adults to interact with their community.