Addressing Ableism through Accommodations for Blindness and Low vision to achieve Equity (AAABLE) in Healthcare

New York University School Of Medicine, New York NY

Investigators

Abstract

PROJECT SUMMARY/ABSTRACT Visual impairment engenders mobility losses, debility, illness, and premature mortality. Visual impairment and related mobility losses correlate with high barrier volume in the healthcare domain, which can restrict equal access, widen gaps in health outcomes, severely compromising quality of life (QoL). In many cases, health and wellbeing are ‘attacked’ by vision loss in any form factor and psychosocial barriers such as anxiety and depression are compounding influences that increase as deficits scale. Imagine navigating a new hospital or clinic with little or no vision, using assistive technology that inconsistently operates or trying to read accessible content that is only employed in ‘some’ care areas. Navigating complex healthcare systems that require a client to ‘jump’ from island of accessibility to island of accessibility is not sustainable; the result is a tendency to directly avoid care centers, missing appointments or to create excuses to indirectly avoid this inaccessible quagmire. In fact, data suggests that patients with blindness and low vision (pBLV) are less likely to be screened for cancer and much more likely to be diagnosed with cancer later, on average, with larger tumor burden and higher stage, resulting in greater mortality rates. Our central hypothesis is that gaps in health outcomes stem, in large part, to inaccessible healthcare systems and require comprehensive frameworks that offer, maintain, and support reasonable accommodations. To better support pBLV and augment personal freedom and agency through the promotion of health and wellbeing, we seek to engage in a mixed-methods approach that leverages qualitative methods to systematically characterize the required support and accommodations and then quantitative methods to assess the performance of a new implementation framework with tailored performance metrics. Our Team is well-positioned to successfully execute all study goals, with unique leadership in accessibility and universal design, lived experience and care coordination/navigation, an evidence-based intervention to overcome factors impacting access to care. The proposal has three aims conducted across three phases, focused on characterization, creation and testing/validating this approach in an urban healthcare setting. First, we will identify factors that affect the accessibility of healthcare services for pBLV. We will then use intervention mapping to develop a patient navigation intervention to assist with the provision of reasonable accommodations for pBLV. Third, we will evaluate the navigation intervention to ensure the reasonable accommodations are both feasible and effective. Given this foundation and planned advances, we predict that this implementation framework will substantially mitigate barriers and associated adverse health outcomes, advancing equal access to high-quality care.