Parents of Children With Medical Complexity Are Essential Health Care Personnel

CMC have significant chronic health conditions that involve multiple organ systems, substantial health service needs, major functional limitations, and high health resource use. They have high levels of medical fragility, technology dependencies (tracheostomies, ventilators, feeding tubes, intrathecal baclofen infusion systems, and others), and psychosocial complexities. We identify CMC as those who have ≥3 organ systems affected (≥3 Feudtner chronic complex conditions), technology dependencies, and complex developmental disabilities.¹  With delicately intertwined services from health and community programs, many parents care for their CMC at home. Without these parents, CMC would reside in care centers, hospitals, and ICUs. Thus, parents of CMC are essential health care personnel.

CDC guidelines ask that all persons who test positive for COVID-19 be quarantined. Home care nurses who have prolonged close contact with COVID-19–positive CMC and families without full personal protective equipment are excluded from work.²  Long-term care centers are reticent to offer respite care for CMC that have been exposed to COVID-19. Community-based respite providers are in short supply. Who will care for CMC if their parents are unable to do so? Parents of CMC work without reserve. When they test positive for COVID-19, parents have little recourse but to render uninterrupted care for their CMC. Parents risk their own well-being for that of their CMC. It is our duty to mitigate their risk through vaccination.

Parents of CMC perform as licensed health care personnel. They function as nurses in managing life-sustaining technologies and administering medications and as certified nursing assistants in caring for their children with disabilities. State Medicaid plans vary in how they implement options of home and community-based services to support care for persons with disabilities in their own homes.³  Some states recognize parents of CMC as formally employed certified nursing assistants, yet other states do not. Thus, some but not all parents of CMC are eligible for phase 1a COVID-19 vaccination. This inequity demands correction. The COVID-19 vaccine should be offered during early phases of distribution to all parents of CMC.

More than 2.9 million US children have been infected with COVID-19.⁴  By vaccinating parents of CMC against COVID-19, we add a layer of protection for CMC and their parents while proceeding with pediatric vaccine development and cocooning our most medically fragile and complex pediatric population. As a vaccination strategy, cocooning can protect susceptible persons from infection by administering vaccines to those around them. It is an applicable strategy in hospitals, ambulatory care settings, and communities.⁵  Immunizing parents of CMC tightens the cocoon of their own homes.

The CDC, with input from an independent panel of medical and public health experts on the Advisory Committee on Immunization Practices, has offered national recommendations on the distribution of COVID-19 vaccinations.⁶  The recommendations target 3 key goals: (1) to decrease death and serious disease as much as possible; (2) to preserve functioning of society; and (3) to reduce the extra burden COVID-19 is having on people already facing disparities.⁶  Additionally, recommendations uphold 4 ethical principles of vaccine distribution during initial phases of limited supply, including maximal benefit with minimal harm, justice, health care equity, and transparency.⁷  Aligning with these 3 core goals and 4 ethical principles, the CDC recommends that initial supplies of COVID-19 vaccine be allocated to health care personnel. We strongly recommend that parents of CMC be included in the early phases of vaccine distribution for health care personnel, thereby reducing the extra burden that families of CMC are experiencing related to COVID-19 and upholding ethical principles of beneficence, nonmaleficence, justice, and autonomy.

CMC represent <1% of all US children, yet account for an estimated 30% of total pediatric health care costs, 56% of hospitalized patients, 82% of hospital days, and 86% of hospital charges in US children’s hospitals.¹  They have the highest levels of medical fragility and intensive health care needs that drive them in and out of inpatient settings, particularly ICUs. These cost estimates do not include the cost of parents as (unemployed) health care providers for CMC. Parents of CMC prioritize the needs of their children over their own health and personal needs and often describe financial and social hardships.¹  These hardships are at risk for escalation during the COVID-19 pandemic as families balance the complex medical and functional needs of their CMC with competing family and personal needs. COVID-19 has great potential to be a breaking point, and COVID-19 vaccination a promising tipping point.

We commend the CDC for its rapid dissemination of guidelines for the distribution of COVID-19 vaccines and the strong collaborations of national and state leaders in this massive effort. We call for federal and state partners to recognize parents of CMC as essential, frontline health care personnel. We must offer COVID-19 vaccine during early phases of distribution to these parents. Identifying CMC for this intervention could be modeled after established processes of identifying children for palivizumab therapy for the prevention of severe respiratory syncytial virus infections, with pediatric providers supplying documentation of medical necessity on the basis of established complexity criteria. To guide busy pediatric providers in quickly identifying the CMC and their families, practices might begin with those children who are eligible for state Medicaid complexity and disability or technology waivers and those with home nursing services. Medical Homes can collaborate with families of CMC, family advocacy groups (Family Voices), generalist and subspecialist health care providers, educators, home nursing agencies, and public health programs to put policies into practice. This small change would affect <1% of US children and their families, yet it promises to have great impact.

The COVID-19 pandemic and vaccine distribution heighten our national awareness of inequities in our health care system. Parents of CMC are among the most essential and least recognized group of health care providers, easily taken for granted because they cannot and will not demand sick time, vacation days, salaries or benefits; resignation and retirement are not options. We are called to address state-by-state variations in respite care, financial supports and waivers, educational and vocational services, and community-based programs that support the participation and inclusion of all persons across the life span. COVID-19 vaccination for parents of CMC is a simple next step along this continuum of supporting and sustaining family caregivers on whom our health care system depends.

CDC

Centers for Disease Control and Prevention

CMC

children with medical complexity

COVID-19

coronavirus disease 2019