With the emergence of COVID-19, information is being spread at an unprecedented pace, but it often lacks clarity and consistency. For families with children who have disabilities, this situation brings a host of additional worries and unanswered questions.
A study from late 2019 revealed a growing number of children with developmental disabilities, with nearly 14 million in the United States having special health care needs, according to the National Survey of Children’s Health. While there are established policies and programs aimed at supporting these children, resources focused on emergency preparedness are scarce, particularly for those with disabilities of all ages.
Preparation communication often overlooks individuals with disabilities, despite them being some of the most vulnerable during a pandemic. While news outlets frequently discuss educational and social distancing strategies, they rarely provide guidance specifically for families with children facing disabilities.
Navigating quarantine can be particularly challenging for families whose children have complex medical requirements. Unfortunately, the guidance available is limited to a few websites offering general suggestions. In a tragic instance in China, a 16-year-old boy with cerebral palsy lost his life after being separated from his family due to quarantine measures.
School closures can exacerbate difficulties for these families. If classes shift online, how accessible will they be? Will school districts continue to provide necessary services? Disruptions in routine, especially for children who thrive on structure, can significantly impact their behavior and overall well-being. Moreover, explaining these changes can be daunting for parents.
Public health officials recommend regular hand washing and avoiding face touching, yet children with disabilities may face sensory or motor challenges that hinder these practices. Alternative suggestions should be made available. Families are also struggling to find basic supplies, such as hand sanitizer, as store shelves remain empty, leaving them uncertain about how to obtain essential items.
Access to frequent medical care is crucial for children with disabilities, but as healthcare systems become overwhelmed, receiving care may become increasingly difficult. Children requiring ongoing treatments might be advised to remain at home if they display any symptoms, while non-verbal children could struggle to communicate any potential COVID-19 symptoms.
Additionally, the lack of clear guidance regarding home support staff complicates matters. While health care providers and schools have received directives, families employing respite or community habilitation staff have been left in the dark. It is vital for families to develop contingency plans for continuity of care, especially in light of potential caregiver illness or absences due to social distancing.
Effective communication about COVID-19 is essential for everyone, but families with children who have disabilities, particularly those who are medically fragile, need tailored guidance. We also must not forget adults with disabilities, many of whom require specialized support. It is critical that all COVID-19 communication is accessible, ensuring that everyone can understand and utilize the information.
Finally, it’s important to recognize the impact of statements like “COVID-19 primarily affects older adults and those with pre-existing health conditions.” Such comments can inadvertently convey that the lives of children at risk for complications are less valuable. The language we use matters, and it should reflect the importance of every individual’s well-being.
As information about COVID-19 continues to evolve, we at Home Insemination Kit are committed to providing the latest updates. For ongoing information, we encourage readers to consult resources from local public health departments, the Centers for Disease Control, and the World Health Organization to stay informed.
For more insights, check out this other blog post on Home Insemination Kit. You can also learn more about the topic from Make a Mom and find excellent resources at UCSF.
Summary:
The COVID-19 pandemic has created unique challenges for families with children who have disabilities. With limited resources and guidance, these families face heightened concerns regarding medical care, educational accessibility, and maintaining necessary routines. Clear communication and tailored information are essential to support these vulnerable groups during this crisis.
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