As the COVID-19 pandemic unfolds, information is being rapidly shared across various platforms. Unfortunately, the messages can often be unclear and inconsistent, leading to increased stress and confusion, particularly for families with children who have disabilities. The challenges faced by these families are magnified during this crisis, as they grapple with unique concerns and unanswered questions.
A study conducted in the fall of 2019 revealed a rise in the number of children with developmental disabilities, with nearly 14 million children in the United States identified as having special health care needs according to the National Survey of Children’s Health. Although there are established policies for special education, health care, and housing for children with disabilities, resources specifically tailored for emergency preparedness are scarce—most are generic and cover all ages of individuals with disabilities.
In times of crisis like this, preparedness communication often treats individuals with disabilities as an afterthought, despite their heightened vulnerability to health emergencies. News outlets frequently discuss educational strategies and social distancing for families, but very few provide specific recommendations for households with children who have disabilities. Quarantine measures can be especially challenging for families managing complex medical needs, leaving them with minimal guidance aside from a few resources online.
The impact of school closures extends beyond education; families face additional hurdles. If classes transition to online formats, will they be accessible for all students? Will school districts be able to sustain support services? The disruption of routines caused by quarantine and social distancing can significantly affect the well-being and behavior of children who thrive on structure. Furthermore, articulating the changes in schedules and closures can pose additional difficulties for these families.
Public health officials recommend regular hand washing and avoiding face touching, but children with disabilities may struggle with sensory processing issues or motor skill limitations that hinder their ability to follow these recommendations. Alternative strategies and clear communication about maintaining supplies are essential, especially as many families find store shelves empty of vital products like hand sanitizers. Families are left wondering where to find the necessary resources.
Children with disabilities often require consistent medical care, which has become increasingly difficult to access during the pandemic. As healthcare systems become overwhelmed, families may be advised to keep their children at home if they exhibit any symptoms of illness. Non-verbal children may have additional challenges in conveying their symptoms if they have been exposed to COVID-19.
Additionally, guidance for managing home staff—such as respite or habilitation workers—is lacking. While health care providers and schools have received directives, families hiring their own support workers find themselves without clear protocols. It is crucial to develop contingency plans to ensure the continuity of care and support, as many families rely on these caregivers to assist with their child’s needs.
Clear and specific communication regarding COVID-19 is critical for all families, particularly those with children who are medically fragile. This must also extend to adults with disabilities who require additional assistance and protection, especially in group living situations where virus transmission can occur more rapidly. It is vital that all COVID-19 information be accessible, ensuring that everyone can benefit.
When discussing the risks associated with COVID-19, it’s important to avoid language that suggests the lives of children with disabilities are less valuable. Phrases like “COVID-19 primarily affects older individuals and those with pre-existing conditions” can be deeply hurtful to parents of children at higher risk for complications.
As the situation surrounding COVID-19 continues to evolve, we remain committed to delivering up-to-date information. For ongoing updates and accurate resources, families should refer to public health departments, the Centers for Disease Control, and the World Health Organization, which is an excellent resource for understanding health during pregnancy and beyond.
For those looking for additional insights, be sure to check out our other posts, like this one on home insemination and the expert advice from Intracervical Insemination.
Summary:
The COVID-19 pandemic presents unique challenges for families with children with disabilities, as these families face uncertainties regarding health care, education, and support resources. Clear communication and specific guidance are essential to ensure they receive the necessary assistance during this crisis.