As federal agencies continue to report on COVID-19 vaccine distribution and priority populations, one group faces undue hardship from both the disease and the uncertain vaccine timelines: people with intellectual and developmental disabilities (IDD).
One independent federal agency, the National Council on Disability (NCD), is responsible for making recommendations concerning disability and the law. In light of COVID-19 vaccine activity, the NCD has notified the nation’s governors that those with disabilities, underlying comorbidities and people receiving home- or community-based services (HCBS) need to be given higher priority status. The NCD recommendations follow federal disability rights laws and are made as a matter of equity.
COVID-19 has hit people with IDD especially hard, with health complications and death rates disproportionately higher for them than for those without IDD. For individuals with Down syndrome there is an estimated four-fold increase in risk for COVID-related hospitalization and a tenfold increase in COVID-related deaths. Nationwide, HCBS recipients with IDD have between 3.6 and 4.8 times the mortality risk from COVID-19 as their peers in the same age group without IDD.
The Centers for Disease Control and Prevention (CDC) has identified a higher risk of infection or unnoticed illness among those who have limited mobility and cannot avoid coming into contact with others. The CDC also has recommended that those living in nursing homes and assisted living facilities be prioritized for the vaccine. Those with IDD who live in these settings have largely been included in these efforts. But many people with disabilities who are at high risk of infection and are living in other congregate settings have been excluded from vaccine prioritization. Finally, of the 4.2 million Medicaid HCBS recipients, nearly 800,000 are enrolled in IDD-specific Medicaid 1915(c) waivers. About 85% to 90% of them are under age 65 and half are living in private homes and are denied vaccine priority status.
The Power of Data
The best way to inform the public health response is through data, including rates of infection, hospitalizations, outcomes and deaths. Such information can help in identifying which segments of a state’s population of people with disabilities need to be prioritized for the vaccine. As states plan for the equitable distribution of the vaccine, they can include the aged and those with disabilities among their priority communities. In addition to data, how vaccine-availability information is disseminated among people with disabilities and other under-resourced communities, including what kind of internet and broadband access they have, should be considered. Many of those with disabilities and aging populations have experienced dramatic discrepancies in access to both.
States need to fully capture the number of their residents receiving HCBS or developmental disability services, or both, because they are likely to have one or more comorbidities that can increase their risk of contracting the virus and of experiencing poorer health outcomes. These populations also may be homebound for medical reasons and could benefit from mobile vaccination alternatives. The Administration for Community Living and the U.S. Department of Health and Human Services offer a number of resources for state leaders on best practices for vaccination accessibility.
Waiting for additional vaccines to become available to address vaccine equity for people with disabilities needs to be considered along with other populations that have faced higher risks during the pandemic. As states and their federal partners are shaping and running vaccine programs, people with disabilities should be included as a priority moving forward.
Haley Nicholson is senior policy director, health, in NCSL’s State-Federal Program.