It is well documented that individuals with disabilities experience significant disparities in access to and quality of health care, with people from marginalized and traditionally underrepresented communities usually experiencing even worse outcomes. While data on the subject is available, thanks in part to the work of organizations such as the Centers for Disease Control, the Disability Statistics Center, and the Agency on Health Care Research and Quality (AHRQ), these data sets are often difficult to find, access, and analyze. Smaller organizations are often unable to obtain information that could help them argue for meaningful change in the policy and science spheres.

The objective of this project is to create and regularly update a “dashboard” that would explore, summarize, and present publicly accessible data from existing nationally representative data sources related to health care disparities for individuals with disabilities, including subpopulations based on both disability type and characteristics such as race, ethnicity, gender, poverty status and other relevant intersections.

Research project R2 addresses one of the primary goals of our RRTC, which is to contribute to improving health outcomes of marginalized communities by examining the connection between social determinants of health (SDoH) and use of health care, employing data obtained from Medicare and Medicaid (or the Medicare-Medicaid Linked Enrollees Analytic Data Source). The R2 project will be a continuation of the work that was initially developed under the IDEAL RRTC.

Project staff will conduct statistical analyses to explore how marginalized groups within the disability community experience disparities, as well as how different SDoH contribute to these disparities. This project will inform system and community approaches to address observed health disparities.

The main goals of this project are:

• To quantify county-specific SDoH changes that are potentially related to utilization of health care and could possibly be affected by policy changes.
• To evaluate differences in the use of health care between samples of publicly insured U.S. adults with intellectual and developmental disabilities who are more or less likely to experience disparity.
• To explore the difference in impact of county-level SDoH on the use of health care by individuals in diverse racial/ethnic groups as well as those living in poverty.

In the U.S., approximately 1.2 million individuals over age 13 are people living with HIV (PLWH). Despite achievements in advancing screening and linkage to care, a number of PLWH never receive a diagnosis. PLWH who are undiagnosed do not have the opportunity to receive medical advancements to lengthen and improve their quality of life and could unknowingly transmit the disease to others.

People with disabilities are more likely to engage in higher risk sexual behavior and have an STI but disparities in HIV prevention and linkage to care remain largely unexplored. Understanding outcomes in HIV prevention and diagnosis at the intersection of disability and other social determinants of health (e.g., stigma, racism) is imperative to reducing HIV diagnostic delay and improving prevention and care outcomes.

Research project R3 is focused on HIV prevention and testing center accessibility among community-based organizations. The experience of R3 project director Tyler G. James, PhD, MCHES^® as an HIV testing, prevention, and linkage counselor in Florida inspired this project. He has spent a large part of his career advocating for people with disabilities living with HIV who experienced inaccessible health systems leading to poorer treatment engagement. As Dr. James explains, “Getting tested is the first step to getting diagnosed with HIV. Ensuring these testing centers are accessible to people with disabilities is necessary to ensure that these populations who are at-risk of HIV or living with HIV get the education and linkage to care they need to improve their personal health outcomes and help us reduce transmission of HIV.”

The two main goals of this project are:

• To assess multidimensional social inequity and its relationship with disability status and HIV prevention outcomes.
• To evaluate the accessibility of community-based HIV testing programs for PWDs. 

The COVID-19 pandemic and expansion of services at the intersection of information science, computer science, and health care are changing how health care is being delivered. For instance, it is now much more common for physicians to hold telemedicine appointments and for patients to communicate with clinicians through internet portals. These changes are placing marginalized populations, including those with intellectual and developmental disabilities (IDD), at risk for growing access inequalities due to a lack of tailored interventions and support. Data from the University of Michigan showed that only 37.1% of patients with IDD in the Department of Family Medicine have used a virtual visit in the past two years. This is despite agreement among patients with IDD and their caregivers that virtual visits would be an appropriate option to receive care.

Additionally, patients with IDD face elevated risk of adverse medication and health outcomes due to the simultaneous use of multiple drugs to treat a single ailment or condition (polypharmacy), medication interactions, and issues with adherence to guidelines provided by the clinical staff. A study by the R4 Co-Director and Co-Investigator Steven Erickson, PharmD, showed that patients with IDD were more likely than the general population to experience hospitalizations for an adverse medication event. Comprehensive Medication Reviews (CMRs) improved prescribing and medication use practices in various patient populations, yet none exist for those with IDD. CMRs take place when a pharmacist conducts in-depth interviews and assessments of a patient’s medication regimen to identify potential medication-related problems and to follow up on recommendations with prescribers.

Health care access for patients with IDD remains both ineffective and insufficient for their needs. The use of navigators, or clinical staff specially trained to guide a patient through a certain aspect of the healthcare system, could potentially improve access and adoption of virtual visit platforms. People with disabilities prefer peer navigators, or role models from the same community as the patient, because they may have lived through similar experiences, including experiencing negative attitudes and barriers to care. This study provides a new opportunity to assess the effectiveness of an integrated navigator and CMR program to improve virtual care access and medication safety.

The two main goals of this project are:

• To evaluate how effective a trained navigator program would be in terms of improving virtual care access, including video visit and portal use, among a group of patients with IDD (R4a).
• To evaluate the effectiveness of a virtual CMR program for patients with IDD. A pharmacist who will work to find and quickly address medication-related problems will be leading the program (R4b). 

It is well known that individuals with disabilities experience significant disparities related to access to and quality of health care. People with disabilities with compounded marginalization based on race, socioeconomic status, sexual orientation, or other identities typically experience the worst outcomes. Despite the passage of the Americans with Disabilities Act in 1990, research continues to demonstrate that that health care systems often do not provide the accommodations or services that individuals with disabilities require to receive quality health care. Research and legal cases suggest that the causes involve both provider-level factors, including implicit bias, as well as systemic discrimination, including a lack of sign language interpreters or accessible environments.

This research project is focused on changing health care systems and their associated programs, policies, and practices to enhance access to and quality of care for patients with disabilities, particularly those from marginalized and traditionally underrepresented communities. This project is modeled after the successful Healthcare Equality Index created by the Human Rights Campaign for promoting more equitable and inclusive care for LGBTQ+ patients and their families.

The main goals of this project are:

• To develop a “report card” consisting of items relevant to equity in health care access and quality for individuals with disabilities. People with disabilities will be able to provide input in the development of the card.
• To rate health care systems based on this report card.
• To create individualized reports that highlight both the quality of care these health care systems provide as well as their potential liability for not complying with the Americans with Disabilities Act and other regulatory guidelines.

High performers will be identified and recognized for best practices. Reference information about all associated clinics and health care systems will be available on the web to increase transparency and accessibility of information.