RELATED ABSTRACTS
Only 40.7% of physicians in the U.S. report being very confident in their ability to treat disabled patients, and only 56.5% strongly agreed they would welcome disabled patients into their practices (Iezzoni et al., 2021). Among medical students, one third hadn’t covered 6 out of 12 intellectual disability-related topics, and half expressed they needed more education on intellectual disability (Burge et al., 2008). People with intellectual and developmental disabilities (IDD) face not only systemic ableism (Persad et al., 2009; Mello et al., 2020) but also bias and resulting mistreatment from their healthcare providers (Ward et al., 2010; Swaine et al., 2013; Havercamp & Scott, 2015). These inequities can be mitigated by more education for healthcare students (Eddey et al., 1998; Long-Bellil et al., 2011) and increased interaction with disabled people (Sahin & Akyol, 2010).
I am partnering with the Arc of Massachusetts to create an Operation House Call-like program for undergraduate pre-med/pre-health students. Operation House Call brings disabled people to medical schools to talk about their experience with healthcare and sends medical students to provide home-health visits to disabled people. As a pre-med student, I am organizing presentations to pre-med/pre-health clubs at UMass on the difficulties people with IDD face when seeking healthcare and how treatment practices can improve. I will connect students with organizations where they can gain experience working with people with IDD and provide a resource, developed by people with IDD, with suggestions for treating patients with IDD.
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Inclusive youth sports opportunities for children with disabilities remain limited in countless communities. As a result, many children are unable to experience the physical, social, and emotional benefits of sports participation. This gap is shaped by a long history of discrimination influenced by institutionalized ableism, government policies, media representation, and socio-cultural values that continue to affect inclusive participation in athletics today. Consequently, children with disabilities remain underrepresented in community sports and face barriers to meaningful participation.
My civic engagement project addresses this gap by implementing a TOPSoccer program in Amherst, Massachusetts through partnerships with the Amherst Youth Soccer Association and the Massachusetts Youth Soccer Association. TOPSoccer is a nationally affiliated program of US Youth Soccer that provides children with disabilities the opportunity to participate in soccer within a safe, fun, and supportive environment. The program uses a structured “buddy system,” pairing each player with a trained volunteer, who provides individualized support and encouragement throughout the season.
Informed by research on ableism in youth sports and the benefits of inclusive programs, my project aims to create a welcoming and accessible space where children of all abilities can participate. Inclusive sports participation can foster social connection, support physical and emotional well-being, and increase opportunities for community involvement among children with disabilities. Ultimately, my project seeks to reduce barriers in local youth sports while demonstrating how community-based initiatives can challenge ableism and expand inclusive opportunities for children with disabilities.
Equal access to healthcare for individuals with disabilities is a foundational stone that needs to be addressed. Provider disability bias or a lack of proper education on working with disabled individuals may be leading to the inequality and lower standard of care that many patients with disabilities face. The lack of a suitable curriculum in most graduate healthcare schools (e.g., medical, physician assistant, nursing, etc.) to educate providers on disability will continue to impact how individuals with disabilities receive care in healthcare settings. This study aims to implement a disability curriculum for pre-health undergraduate students and gauge what participants took away from the education by measuring their change in attitudes towards disability using the Disability Attitudes in Healthcare Scale (DAHC), Erroneous Assumptions Scale, and the Questionnaire on Disability and Opportunity (QDIO). Pre-health students will complete the online curriculum developed by the New Hampshire Disability and Health Program (DHP), which includes video components created by people with disabilities. Participants will then reflect through short response questions on what they learned about working with people with disabilities in healthcare. The study is expected to find that the attitudes of future healthcare professionals towards working with people with disabilities are more positive after learning more about the barriers people with disabilities face and how to better get around those barriers.
RELATED ABSTRACTS
Auditory neuropathy spectrum disorder (ANSD) is one of the many hearing impairments, where sound may enter the inner ear, but does not have a clear path from the ear to the brain. Since the indicators show up in different ways it is often hard to diagnose and treat. This objective of this research is to better understand the genetic origins of ANSD and study if genetic testing could help spot where the hearing problem comes from by following a literature review in PubMed database. In a clinical trial, researchers studied 23 people who had ANSD who had no blood relations and collected information from their medical records. Specimens were collected from each patient, and their DNA were deconstructed using advanced genetic technique, which included whole-exome and next-generation sequencing, with results confirmed by additional testing. According to the clinical findings, the patients were organized into three separate groups: non-syndromic ANSD, which is when hearing loss occurred alone; syndromic with peripheral neuropathy, where ANSD occurred with nerve problems outside the brain and spinal cord; and syndromic plus central nervous system involvement with hearing disorder and brain / spinal cord problems. The researchers established numerous genetic variants in genes such as Otoferlin (OTOF), Pejvakin (PJVK), and Diaphanous-related formin 3 (DIAPH3). The severity of hearing loss among patients ranged between mild and profound. In general, the study demonstrated that ANSD can be caused by mutations in various genes which makes genetic testing a valuable tool. It can help differentiate ANSD from other related conditions, determine whether it is part of a larger disorder, and provide useful information for predicting the outcomes and guiding treatment discussions, options and decisions.