Little Lobbyists Statement: COVID-19 Vaccine Prioritization Must Include Individuals with Complex Medical Needs and Disabilities and Their Caregivers

Individuals with complex medical needs and disabilities, including children, are at a higher risk of severe illness and death from COVID-19. Little Lobbyists calls on every state to prioritize COVID-19 vaccinations for individuals with complex medical needs and disabilities and their caregivers – including paid home health care providers and direct support professionals and unpaid home caregivers, including family members.

Guidance from the Centers for Disease Control and Prevention (CDC) clearly states that many individuals with disabilities have an increased risk of severe illness from COVID-19. This includes people of all ages with serious underlying chronic medical conditions, and those “who have limited mobility or who cannot avoid coming into close contact with others who may be infected, such as direct support providers and family members.”

At-home caregiving for people with disabilities is a crucial component of public health. In many cases, a significant part of caregiving is provided by family members in-home settings. This is increasingly true during the COVID-19 pandemic, either because families have had their professional caregiving hours reduced, or because family members have taken on an increased share of caregiving responsibilities to limit the number of people in their homes in order to decrease the possibility of exposure to COVID-19.

Thus far, COVID-19 vaccination prioritization and implementation has not been uniformly enacted by individual states. This creates a dangerous and untenable situation in which people with complex medical needs and disabilities and their primary caregivers may not be vaccinated for several months at least. The risk this presents to individuals with disabilities is two-fold. First, it increases the chances that those most at risk for serious illness will be exposed to and contract COVID-19. Second, and perhaps equally dangerous, if caregivers are infected and must self-isolate, then they can no longer provide necessary, critical, and often live-saving care to their family members with disabilities and/or complex medical needs. If this happens, there are not sufficient resources – State or otherwise – to provide the care and support their families need.

The lack of clarity and consistency in vaccine guidance has already led to significantly increased anxiety and risk for individuals with complex medical needs and disabilities and their families. This dangerous situation must be remedied immediately. Every State Department of Health’s vaccine distribution plan must clearly include people with complex medical needs and disabilities, paid home health workers and direct support professionals and home caregivers, including family members, who provide regular medical care to children and adults with developmental disabilities and/or complex medical needs.

COVID-19 Vaccine vials
Laura Hatcher