The Photovoice Voices Lost in Crisis project is a participatory action research project exploring the experiences of 13 adults living with an intellectual disability through the COVID-19 Pandemic in 2020. We sought to explore the impact the pandemic and societal responses had on the lives of adults with intellectual disabilities. Through the research, we wanted to identify concerns related to social isolation, mental health, and overall quality of life for persons with intellectual disabilities living in Ontario during the COVID-19 pandemic. The research used a photovoice methodology where participants were trained to use a tablet to take photographs of their experiences and wrote a reflective journal to reflect on their experiences through the photographs. The photographs were used as prompts in interviews which allowed the participants to further discuss their experiences. Results of the research have been disseminated at Night at the Museum Niagara Falls, proseminar for ADS MA students and in a photo gallery at the first PARN event February 2023. Currently, we are working towards developing two manuscripts for publication of the results of this project.
The Participatory Advocacy Research Network (PARN) is a group of self-advocates living with intellectual and developmental disabilities, allies, and researchers, who hope to create spaces and opportunities for self-advocates, their allies, and researchers to work together on research that will enhance the quality of life of people with intellectual and developmental disabilities. We have researchers from several departments at Brock University, as well as Nipissing University, McMaster, and Durum College and Mohawk College. We also are representatives from several community partners and self-advocacy groups, like Christian Horizons, Vita Community Living Services, Community Living Haldimand, Empower Simcoe, New-Visions Advocates from London, and the Community Living Ontario Council President. We are working towards the development of three outreach activities:
An online platform to share information about resources, services, lived experiences, and research
A community of practice to discuss research, problem-solve, and get feedback on research initiatives
A ‘Research Camp’ in a safe, accessible, and inclusive space to engage in workshops to learn about how to do research with this population, network, and disseminate research.
Kerry’s Place Autism Services developed Group Living Compatibility Tool (GCAT) to predict the potential compatibility of prospective housemates based on factors related to a person’s lifestyle and preferences. The objective of the GCAT is to improve the transition process. The GCAT is indented to identify whether two persons are likely to safely cohabitate and ensure the best quality of life for all parties. The GCAT measures compatibility across six categories: general house details, health needs, sensory preferences, lifestyle, social interaction, and behavioural profile. For each category, preferences for each person are assessed and compared to potential housemates. This research project aims to evaluate the psychometric properties of the Group Living Compatibility Assessment Tool (GCAT) created to address the concerns of while ensuring the individual is at the center of the decision-making process. An expert survey (n= 68), focus groups with self-advocates and family members (n= 31), and a scoping review were conducted to get feedback on the GCAT and make recommendations for a new version that will be piloted in the future.
The pandemic created significant challenges for students with disabilities transitioning to online education. This research sought to examine the experiences of students with disabilities in their transition to online education in the Spring of 2020 and Fall of 2020. The research involved a mixed methods design using an online survey and follow-up open-ended surveys and interviews with students with disabilities collected virtually. Using an initial survey (n= 222) and follow up survey and interviews, students reflected on the challenges and advantages of online education, modes of assessment and instruction that facilitated and impeded the educational experience, the types of accommodations used, and feedback for professors, the administration and student accessibility services. To date, the initial survey data has been published in the International Journal of Higher Education. Currently, a thematic analysis of the data as well as an interpretive phenomenological analysis of the interviews are being conducted. Next steps for this project are to write two manuscripts for publication.
Good Neighbour Project
The Good Neighbour project was conducted in partnership with Greg Bechard, Elmira Developmental Support Corporation. This research seeks to expand previous findings and examine the success of the Intentional Community and support for the residents of the community. This research will determine the phenomenological nature of the living arrangement, whether this living arrangement is beneficial for the people involved, and the factors that may have contributed to or limited these benefits. It should also act as a guide for the development of other living arrangements for people with developmental disabilities. To explore the sense of community, we used the Core Design Principles from Prosocial by Elinor Ostrom as our conceptual framework. We conducted 16 focus groups and 2 interviews with tenants, Good Neighbors, family members, and paid support workers. To analyze the results we conducted a Thematic analysis are focused on capturing relevant dimensions to the research questions and don’t necessarily focus on the frequency that areas were discussed. In a preliminary analysis, themes of reasons for selecting the Intentional Community, the importance of leadership, how the CDP emerged for tenants with disabilities and how they manifest collectively are addressed. Currently, the researchers are continuing to analyse and write up the results.
Discourse surrounding Diversity, Equity, and Inclusion (DEI) have become part of an expanding and evermore present narrative about how to improve practices within Applied Behavior Analysis (ABA). As suggested by Dr. Carol Pilgrim, in her 47th ABAI Presidential address, “wouldn’t it seem good to know the nature of this discourse, and be able to follow its development”? This project aimed to describe the changing discourse and the development of DEI at the ABAI Annual Convention since the inception of the DEI subcommittee in 2019. A descriptive analysis provided an overview of the events labelled as DEI, by identifying the frequency of presentation types, domains, and program areas. A summative content analysis was conducted on abstracts labelled as DEI (N = 488) and explored the areas of diversity (e.g., age, gender, disability, religion, ethnicity, and sexuality) and dimensions of diversity (e.g., recognizing discrimination and diversity, and cultural humility), equity (e.g., systematically addressing barriers and individualized accommodations), and inclusion (e.g., cultural competence and creating space). This presentation will provide an overview of the current state of practices and gaps between ABA and the movement toward more inclusive, equitable, and diverse practices.
The Community Capacity Development Initiative (CCDI) involves a series of workshop-type training sessions for support professionals on the principles of applied behaviour analysis (ABA), positive behaviour supports, as well as the process for conducting functional behaviour analyses and developing behaviour support plans. This research involved three phases to comprehensively evaluate CCDI. The current phase, phase two, aims to evaluate former CCDI participants’ perceptions of the effectiveness of the CCDI at increasing community capacity, identify the factors that facilitate or impede its efficacy, and the impact the CCDI has had on the people the agencies support through the initiative and beyond. This research follows a sequential mixed-methods design which involves online surveys, follow-up interviews or focus groups (based on agency preference and availability), and potentially observations with previous CCDI service providers and service users. The next steps for this research are obtaining REB approval and then distributing the surveys to former CCDI participants.
The pandemic presented agencies supporting adults with developmental disabilities with additional challenges in safely providing quality support, leading to increased stress and isolation among management teams. Prosocial is a process-based group intervention that uses Acceptance and Commitment Training to promote effective group functioning and psychological flexibility (Atkins et al., 2019). Using a quasi-experimental (waitlist-control) design, we evaluated the effects of a 4-session virtually-delivered Prosocial intervention on the group functioning of two management teams (n1=12, n2=7). This comprehensive evaluation included pre-post qualitative and quantitative questionnaires of well-being and group functioning and direct observations of goals and engagement conducted during weekly management meetings. Agency developed goals focused on reconnecting and supporting each other and improving meeting processes (e.g., staying engaged and reviewing helpful and unhelpful behaviours). Direct observations and content analysis of open-ended survey questions indicated progress toward the goals and improved group functioning and collaboration. However, the team’s group functioning ratings showed no significant improvements. Social validity data on participants’ experiences suggested that Prosocial was beneficial and feasible. Given that this study is one of the first formal empirical evaluations of Prosocial, we will describe the successes, challenges, and recommendations for future administrations of Prosocial.
The Dual Roles and Changing Relationships project was developed in response to the expressed interest of adults with intellectual and/or developmental disabilities (IDD) and their caregivers who had previously taken part in the Voices Lost in Crisis photovoice project. During the Voices Lost in Crisis project, participants with IDD and their caregivers, highlighted how their relationships had changed since the beginning of the COVID-19 pandemic, and how much of this change resulted from the need for caregivers to take on the dual role of support person and parent. This research project aims to bring to light some of the additional concerns that arose from the restrictions put forth by the COVID-19 pandemic. Using participatory action research methods, this project will be developed in collaboration with adults with IDD and their caregivers. Currently, the project is in it’s initial stages, with efforts in place to recruit members of the IDD community and their caregivers as co-researchers and advisors.
Perspectives of ABA
Due to lifetime developmental differences and systematic barriers, many people on the autism spectrum and their families seek out Applied Behaviour Analysis (ABA) services and support. Although ABA is an evidenced-based behavioural intervention that addresses social and behavioural challenges and teaches skills to improve quality of life and independence, ABA has become quite a controversial approach criticized by self-advocates, families, and professionals. Autism advocates have proclaimed that this practice is derived from a deficit approach that focuses on erasing diversity with potentially traumatic consequences. With such scrutiny and controversy surrounding the practices of ABA and to ensure best practice, the experiences of self-advocates need to be at the forefront of the research and discussion surrounding best practices in service. Unfortunately, these voices continue to be devalued in current literature. Accordingly, in partnership with researchers from Western University, this research aims to understand the perspectives, experiences, and impacts of ABA-based practices for autistic people and develop strategies for including autistic voices in research and services provided to autistic people. Surveys and interviews will be conducted with Autistic to explore their lived experiences with ABA services and supports. This research will be used on enhance the knowledge surrounding best practices that support neurodivergent populations.
#ABA (Content analysis of Twitter posts project)
Naturalistic observation of verbal behaviour on social media is a novel method of gathering data on the acceptability of topics of social interest. In other words, online social opinion is a modern-day measure of social validity. We sought to gain an objective understanding of online discourse related to the field of applied behaviour analysis. We conducted an analysis of Twitter posts related to Applied Behavior Analysis (e.g., #ABA, #BehaviorAnalysis,#appliedbehaviouranalysis). Our initial sample consisted of 119,911 Tweets from the past ten years (2012 – 2022). We selected a random subset (n = 12,000) for further analysis using a stratified sampling procedure to ensure that Tweets across years were adequately represented. Two observers were trained to code Tweets for relevance and sentiment toward the field. We will discuss trends regarding the valence (i.e., positive, negative, neutral) of relevant ABA Tweets toward the field in the broad context of observed Tweets. Further, we conducted a content analysis on a sample of the influential Tweets to determine the nature of the discourse demonstrating a bias towards and against ABA. This project would help us to understand the dominate discourse around ABA and identify ways to improve our communication and practice.
QoL project with CLB & CBI
The QOL project was developed in collaboration with Community Living Burlington and CBI Health. This is a community-based project that is being co-developed with each of the partner agencies. The goal of this project is to provide information about how the Individual Support Plans developed by Community Living Burlington ---developed to support the short and long-term goals, human rights and quality of life for the persons they support--do or do not align with the short and long-term goals, the promotion of human rights and support for improved QOL outlined in the Behaviour Support Plans written and implemented by CBI Health. This project is currently in the phase of obtaining Research Ethics Board approval, with an expected start date in early fall 2023.