It was found that excess mortality for this group of people with disabilities was 7.4 times that of community-dwelling Medicaid beneficiaries of the same age who were not receiving home and community-based services, and 26.6 times that of the general population.
Mortality rates appeared to be higher for beneficiaries receiving Medicaid home and community-based services (HCBS) compared to beneficiaries not receiving these services during the COVID-19 pandemic.
Shared in a recent analysis published in Health Affairs, data was collected from 14 private health plans in 12 U.S. states during the initial months of the pandemic from March 2020 to December 2020. Data was gathered to examine excess mortality rates among recipients younger than 65-years who received Medicaid long-term services and supports (LTSS) in the form of HCBS.
Authors of the analysis shared that more than 23% of all COVID-19 related deaths in the U.S. have been linked to long-term care facilities. Though, very little is known about the impacts of COVID-19 on those with long-term services and support needs under disabilities who are not living in these facilities. Those with disabilities typically are receiving care through Medicaid HCBS.
It was found that excess mortality for this group of people with disabilities was 7.4 times that of community-dwelling Medicaid beneficiaries of the same age who were not receiving home and community-based services, and 26.6 times that of the general population. As a proportion of expected mortality, excess mortality for older HCBS recipients ages 65 and up was slightly higher but comparable to older nursing home residents.
The monthly sample for the analysis comprised about 55,000 adults younger than 65 years and 90,000 adults 65 and older receiving Medicaid HCBS.
These groups of HCBS recipients suffer from high mortality rates due to likely factors of societal barriers, individual risk factors and indirect impacts. People receiving Medicaid HCBS have high rates of secondary health conditions that contribute to greater risk of contracting COVID-19 and experiencing poorer outcomes. Some reside in group settings or attend congregate day programs, placing them at greater risk for exposure. In addition, people typically rely on daily in-person services delivered by caregivers who routinely enter their homes, which further increases risk for exposure to COVID-19.
Additionally, people with disabilities, family caregivers and direct care workers in the community faced significant barriers obtaining PPE and testing as COVID-19 spread. Staffing was also an issue in the availability of these caregivers, which contributed to patients going without essential daily supports and services. Though more research is needed, people with disabilities have reported delaying or going without routine preventive and specialty care during that time period. This can have dire impacts on this population, the analysis said.
Authors stated this study helps shine a light on a population that has largely been invisible in the public discourse and COVID-19 response. Their findings highlight the vulnerability of the HCBS population during the pandemic.
For example, early on in the pandemic, Congress required timely federal reporting on mortality in nursing homes. Studies have linked those reports to nursing home staffing, media attention and helped engage policy discussions and responses.
However, similar reporting was not required for people receiving Medicaid HCBS. Of the approximately 14 million people with LTSS needs in the U.S., only a small fraction reside in nursing homes.
According to the analysis, approximately 7.5 million Medicaid beneficiaries received HCBS in 2019, and 1.6 million resided in nursing homes and other institutions
While more conversations have been had about expanding access to HCBS and LTSS systems are progressing, gaps to these services remain in access and availability.
Authors encourage that as aging and disability communities and policy makers work on systems reforms, their findings indicate a need to also address major gaps that exist in access to timely, publicly available data and quality reporting for people receiving HCBS across the age spectrum.