Mansha Mirza

Barriers to healthcare access among refugees with disabilities and chronic health conditions resettled in the US Midwest.

AbstractChronic conditions and related functional disabilities are highly prevalent among resettled refugees in the United States. There is a need to explore this population’s access to appropriate healthcare services in order to identify service disparities and improve interventions. Using a community-based participatory research approach, semi-structured interviews were conducted with key informants to identify healthcare access barriers affecting disabled and chronically ill refugees. Eighteen participants were interviewed, revealing three main barriers: (1) inadequate health insurance, (2) language and communication barriers, and (3) a complex maze of service systems. These barriers were found to operate at systems, provider, and individual levels. Broad-based policy and practice interventions are required to address barriers including: an expanded pool of medical interpreters, peer navigators, innovative health information technologies, and greater collaboration and information-sharing between service systems. Further research is needed to monitor the impact the Affordable Care Act on service access of refugees with disabilities and chronic conditions.

Beyond access: A case study on the intersection between accessibility, sustainability, and universal design

Purpose. A growing emphasis has been placed on providing equal opportunities for all people, particularly people with disabilities, to support participation. Barriers to participation are represented in part by physical space restrictions. This article explores the decision-making process during the construction of a new office building housing a disability-rights organization. The building project featured in this study was developed on the principles of universal design, maximal accessibility, and sustainability to support access and participation. Method. A qualitative case study approach was used involving collection of data through in-depth interviews with key decision-makers; non-participant observations at design meetings; and on-site tours. Qualitative thematic analysis along with the development of a classification system was used to understand specific building elements and the relevant decision processes from which they resulted. Results. Recording and analyzing the design process revealed several key issues including grassroots involvement of stakeholders; interaction between universal design and sustainable design; addressing diversity through flexibility and universality; and segregationist accessibility versus universal design. Conclusions. This case study revealed complex interactions between accessibility, universal design, and sustainability. Two visual models were proposed to understand and analyze these complexities.

Community Reintegration for People with Psychiatric Disabilities: Challenging Systemic Barriers to Service Provision and Public Policy through Participatory Action Research.

People with psychiatric disabilities represent a growing group within the population of nursing home residents in the USA. Despite a preference for living in community‐based settings, the availability of supportive services for community living is hindered by barriers at both the service provision and public policy levels. Therefore, understanding and responding to the community living and participation needs of people with psychiatric disabilities is a highly relevant area for action research. This paper discusses a participatory action research endeavor carried out in collaboration with key personnel at Centers for Independent Living who work to provide community reintegration services for individuals with psychiatric disabilities. The events of this 15 month partnership are extensively described, analyzed and discussed. Findings reflect the critical need for communication, dialogue and action to support people with psychiatric disabilities in the community.

Spirituality in Latino families of children with autism spectrum disorder

ABSTRACT Research on Latino parents of children with intellectual and developmental disabilities (IDD) suggests that these parents often use spirituality to conceptualize and to cope with their child’s diagnosis. However, there are no studies that examine religion among Latino parents of children with autism spectrum disorders (ASD). The current study explores how Latino parents of children with ASD incorporate spirituality into their conceptualizations of their child’s disability. In the current study, 34 Latina mothers of children with ASD were interviewed about autism-related services, family characteristics, and cultural beliefs including spiritual beliefs. Thematic analysis of the transcribed interview data relating to spiritual beliefs was conducted for the present study. Most mothers endorsed beliefs that their child with a disability was a message from God. Within this theme, mothers reported beliefs that their child was a blessing from God, a test from God, a sign from God or that the parent was special. Other parents believed that having a child with a disability was not an act of God, but related to biomedical factors, and another group of parents was unsure about the spiritual meaning of their child with a disability. Lastly, some mothers reported that their larger cultural group believed that having a child with a disability was a punishment or a negative sign from God but they markedly rejected that conception. These findings suggest that providers working with Latino families of children with ASD should acknowledge the importance of spirituality for these families.

Unpacking University–Community Partnerships to Advance Scholarship of Practice

ABSTRACT Today, more than ever, occupational therapists are engaged in close partnerships with community organizations and community settings such as service agencies, refugee and immigrant enclaves, and faith-based organizations, to name a few, for the purpose of engaging in scholarship of practice. However, we know little about the views of community partners regarding the development and sustainability of university–community partnerships. The purpose of this article is twofold: First, we will describe a pilot study in which we gathered qualitative data from community partners engaged in scholarship of practice with faculty and students, regarding their views about benefits of partnerships, challenges, and characteristics of sustainable partnerships. Second, based on this pilot study and extensive experience of the authors, we propose a revised version of a partnerships model available in the literature. We illustrate the model through examples of the authors’ collective experiences developing and sustaining successful university–community partnerships.

A participatory program evaluation of a systems change program to improve access to information technology by people with disabilities

Purpose. To pilot-test and evaluate an innovative program providing information technology (IT) access to people with disabilities transitioning out of nursing homes into the community using a participatory approach. Methods. Pre- and post-training data was collected on the 61 program participants to reflect three broad areas related to the IT training experience: performance; self-efficacy; importance, satisfaction and control. Additionally, semi-structured interviews were conducted with seven participants and five members of the program staff to explore environmental barriers to IT access for this group and the efficacy of the program in addressing these barriers. Data analyses followed a mixed methods approach incorporating both qualitative and quantitative techniques. Results. Participants showed substantive changes in different spheres of IT use after completion of training. Post-training changes were significant particularly in areas related to self-efficacy, importance and satisfaction pertaining to use of IT. Qualitative findings substantiated the quantitative results and also revealed the numerous barriers to IT access that persons with disabilities continue to face within their communities. Conclusion. Results indicate the feasibility, effectiveness and value of IT access to people with disabilities particularly those transitioning from institutional life to community living. Further action research aimed at increasing IT access for this group within local communities and neighborhoods is needed to address this issue at a broader societal level.

A Scholarship of Practice Revisited: Creating Community-Engaged Occupational Therapy Practitioners, Educators, and Scholars.

ABSTRACT Trends in policy, practice, and research point to the need for a community-engaged Scholarship of Practice (SOP) model that can be used to inform the development of occupational therapy practitioners, educators, and researchers. This article describes a community-engaged SOP model, the evidence justifying the need for such a model, and strategies to effectively create community-engaged practitioners, educators and career scientists within occupational therapy. We highlight several examples of community-based participatory research to further inform this model, and in turn, translate this knowledge back to communities for action and systems change that can affect the lives of people with disabilities and the communities in which they seek to live and participate long term.

Crossing Borders, Pushing Boundaries: Disabled Refugees' Experiences of Community and Community Participation in the USA

Purpose – Disability-related politics and discourse in developed countries seldom includes the voices of disabled people from immigrant ethnic communities. Attending to the experiences of people with disabilities among immigrant communities is particularly salient when considering questions about community participation and citizenship in the context of immigrant-receiving societies such as the USA. This chapter aims to shed light on this topic by examining the narratives of refugees with disabilities resettled in the USA. Methodology – A global ethnography framework was used to collect narrative data from eight Cambodian and seven Somali refugees with disabilities through observations, in-depth interviews, focus groups, and social network surveys. Additionally semistructured interviews were conducted with 10 service providers/key experts. Data were analyzed using grounded theory techniques. Findings – Data from the study revealed that the Cambodian and Somali participants were distinct in terms of their access to sources of support and community and in their experiences of community participation barriers. Depending on their respective circumstances, they engaged in various tactics and strategies to negotiate these barriers and to create new networks of support and advocacy. Limitations – The study sample was purposively selected and therefore findings represent only the views and experiences of the participants precluding any claims about generalizability. Furthermore, owing to the cross-cultural nature of this research there is a possibility that certain linguistic and cultural nuances were missed during data collection and analysis. Implications – Findings suggest a need to recognize and support heterogeneous disability experiences and diverse expressions of “disability activism” enacted in individually, contextually, and culturally preferred ways in order to draw disabled people from diverse groups into the broader disability community in the USA.

Soul Searching Occupations: Critical Reflections on Occupational Therapy’s Commitment to Social Justice, Disability Rights, and Participation

In this chapter we analyze the construct of participation and the reality of participation disparities for people with disabilities. We also critically reflect on the professed role of occupational therapy (OT) in advancing social justice by facilitating disabled people’s participation in society. We begin the chapter by debating the construct of participation as a nuanced, individually-determined phenomenon. We also highlight the futility of attempts to capture this construct through a single magical number or normative comparisons. Taking a more critical perspective, we draw attention to the heterogeneity of participation experiences even among people with disabilities. We follow this with a pitch for pluralized notions of disability participation to include diverse expressions of individually, contextually and culturally-defined interests.

Working With Clients With Limited English Proficiency: Mapping Language Access in Occupational Therapy

ABSTRACT Nearly one in ten US residents have difficulty speaking and understanding English and are deemed to have limited English proficiency (LEP). Despite federal mandates for provision of interpreters and other language access services, individuals with LEP experience notable health disparities. Occupational therapists must be prepared to equitably serve this population, however there is a dearth of research evidence and practical recommendations about our professions readiness to serve this growing population. This paper maps the current healthcare policy environment and existing language access research relevant to occupational therapy. Implications for the future of occupational therapy research, education and practice are discussed.