Book Clubs for Individuals with Down Syndrome

1. Susan Loveall (University of Nebraska-Lincoln)
2. Rebecca Baxter (LETS Go)
3. Alicia Davis (University of Nebraska-Lincoln)
4. Sinéad Flynn (Down Syndrome Ireland)
5. Aisling Brown (Down Syndrome Ireland)
6. Mary Frances O’Dwyer (Down Syndrome Ireland)

Correspondence: sloveall-hague2@unl.edu

As the life expectancy of individuals with Down syndrome increases, so should the supports and opportunities available to them in adulthood. However, as individuals with Down syndrome graduate from high school/secondary school and are no longer receiving formal education services, some opportunities may become more limited (Channell & Loveall, 2018). This includes, for example, less access to social opportunities and community engagement, as well as to speech and language services and reading instruction. This is problematic, given that they will likely continue to have speech, language, and reading difficulties across the lifespan (Abbeduto et al., 2007) and given the increased risk of cognitive decline (Hodapp et al., 2019). Book Clubs have the potential to improve and increase language, reading, and social skills, community inclusion, social interactions, social connectedness, and feelings of belongingness, and overall quality of life (Conner & Plocharczyk, 2019; Hollins et al., 2016; Rogers, 2022). Although there has been no published research documenting Book Clubs specifically for individuals with Down syndrome, there are examples of successful models. The current symposium will include presentations of two such models: one in the United States (by Davis & Loveall) and one in Ireland (by Flynn, Brown, & O’Dwyer). Both are collaborations with Down Syndrome-specific associations. These practitioner presentations will highlight the structure, function, and benefits of their book clubs, including what makes them successful. Rebecca Baxter will serve as discussant to highlight key components and benefits of book clubs.

References

Abbeduto, L., Warren, S. F., & Conners, F. A. (2007). Language development in Down syndrome: From the prelinguistic period to the acquisition of literacy. Mental Retardation and Developmental Disabilities Research Reviews, 13(3), 247-261.

Channell, M. M., & Loveall, S. J. (2018). Post-high school transition for individuals with Down syndrome. In International Review of Research in Developmental Disabilities, 54, 105-135.

Conner, M., & Plocharczyk, L. (2019). Back to the future: Library book clubs for individuals with intellectual disability (ID). The International Journal of Information, Diversity, & Inclusion, 3(4), 68-77.

Hodapp, R. M., Core, R. E., Burke, M. M., Mello, M. P., & Urbano, R. C. (2019). Health issues across adulthood in Down syndrome. In International Review of Research in Developmental Disabilities, 57, 229-265. Academic Press.

Hollins, S., Egerton, J., & Carpenter, B. (2016). Book clubs for people with intellectual disabilities: The evidence and impact on wellbeing and community participation of reading wordless books. Advances in Mental Health and Intellectual Disabilities, 10(5), 275-283.

Rogers, S. (2022). An inclusion book club supports literacy and communication. Leader Live.

A Book Club Collaboration: Where Creative Minds Come Together

1. Alicia Davis (University of Nebraska-Lincoln)
2. Susan Loveall (University of Nebraska-Lincoln)

Correspondence: alicia.davis@unl.edu

The “Book Club” at the University of Nebraska-Lincoln was formed in 2016 as a collaboration between the speech-language pathology clinic at the university and the local Down Syndrome Association. Currently, it consists of 10 young adults with Down syndrome or other intellectual and developmental disabilities or differences, three graduate students studying speech-language pathology, two undergraduate volunteers, and two faculty members.

Goal of Book Club

The goal of Book Club is to use reading as a tool for socialization, language development, and learning for all members.

Meeting Structure

Consistency in routine is a key component of our meetings. We meet once a week for one hour on Thursday evenings. We meet in the lobby of our clinic and chat until it is time to start. In our meeting room, we sit around a rectangular table. We follow the academic calendar and take time off between semesters. Each night a different graduate student leads the group discussion using PowerPoint slides. Meetings start with a question of the day. We then have a snack and review the rules. The rules have been agreed upon by all members, and we update them as needed each semester. After reviewing the rules, we talk about the book. The leader starts us off with 2-3 questions. Then we break into two smaller groups to discuss what we read and answer the questions. One of our rules is that everyone gets a turn to talk! After discussion, we come back together as a big group to share any big ideas/insights. Then we vote on how many chapters to read for the next meeting and share announcements.

Guiding Principles

Our guiding principles are: 1) Book Club belongs to the members – we make decisions together; 2) The focus of Book Club is on the book + connections to our lives, 3) We make adjustments and changes as needed. We feel it is these guiding principles that have helped Book Club be so successful.

Struggles & Lessons Learned

We have learned a lot, and adjusted accordingly, over the last 10 years. Some of those lessons have been about what the Book Club members want to read, that it is important to build trust with families and communicate with them regularly, how to navigate Zoom, and to be prepared for tough conversations about mental health, emotion, Down syndrome, and disability.

Student Training

Graduate students develop skills in leading group discussions as well as building comprehension and practical application of literacy skills with the Book Club community members. Undergraduate volunteers have the opportunity to see what clinical experiences are like during graduate school and to interact and network with families and peers within a structured setting.

Benefits of Book Club

Book Club benefits all of its members, including faculty, students, and community members. It offers socialization, friendship, laughter, and community. It is an important part of our work as faculty and it challenges all of us to learn and grow.

Down Syndrome Ireland’s Library Book Club Initiative

1. Sinéad Flynn (Down Syndrome Ireland)
2. Aisling Brown (Down Syndrome Ireland)
3. Mary Frances O’Dwyer (Down Syndrome Ireland)

Correspondence: sinead@downsyndrome.ie

In 2022, Down Syndrome Ireland launched its National Book Club Initiative in collaboration with libraries across the country. This initiative offers an opportunity to bring people with Down syndrome and other intellectual disabilities together to enjoy books, share stories and build friendships in a community setting. Currently there are 20 book clubs running in libraries around Ireland, with several others in the early stages. In this presentation we will discuss the goals of the initiative, our collaboration with libraries, what works well in structuring the clubs, how this is informed by Aisling’s research, and how the model is evolving to expand club membership and move beyond the remit of a traditional book club.

Aims

• To encourage literacy and lifelong learning for adults with Down syndrome
• To support the development of social and life skills
• To enable community participation
• To facilitate social inclusion

Library Collaboration

Libraries play a key role in fostering a sense of community by hosting these book clubs. Facilitated by experienced librarians, the clubs work to promote inclusion and nurture a lifelong love of reading for people with Down syndrome. DSI provides training to staff, equipping them with the knowledge and skills to create an inclusive and supportive environment for club members. In addition to providing facilitators and spaces for club meetings in a community setting, libraries offer a range of free resources, while promoting social inclusion and bringing increased awareness of Down syndrome to the community.

Club Structure

• A 1.5 hour staff training on Down syndrome awareness and book club tips and ideas, delivered by one or two prospective club members and the DSI Adult Education Officer
• A monthly hour-long book club, including 15-20 minutes to browse
• A fixed meeting day each month, to be confirmed by a link person liaising with members and library staff
• Reading material decided between members and staff, with support from DSI

Aisling’s Research: Studying the Psychological Benefits of Library Book Clubs for Adults with Down syndrome in Ireland

This research will explore the lived experiences of adults with Down syndrome participating in book clubs. Aisling will be examining how reading and group discussion contribute to wellbeing, identity and social inclusion. The research will consider the implications of inclusive cultural environments for participation and practice in library contexts.

Looking Ahead

As this project continues to reach new library branches around Ireland it has begun to expand from the original model. In the last year, two clubs geared towards teenagers have started up and the first club for younger children has also begun. Several clubs are incorporating new facets, such as media literacy, into their monthly meetings. In these cases, the book club model is serving as a springboard for more general library culture clubs, which can then cater to the specific wants and needs of each diverse group.

Book Club Discussion

1. Rebecca Baxter (LETS Go)

Correspondence: rbaxter@letsgouk.org

This symposium only has two presentations. However, Rebecca Baxter will serve as discussant to highlight key components and benefits of book clubs for individuals with Down syndrome.