LuMind IDSC and other Down syndrome organizations have received inquiries from families about COVID-19 and their concerns for their loved one with Down syndrome. The information is currently evolving and we are closely monitoring current and accurate information surrounding COVID-19.
Down Syndrome and COVID-19 Caregiver Survey
If you care for a person with DS who has tested positive for COVID-19 or has symptoms of COVID-19, we invite you to complete a voluntary survey. It will take about 10-20 minutes to complete. It asks for: 1) general information about the person with DS, 2) their current health problems, 3) whether they were tested for COVID-19, 4) COVID-19 symptoms and 5) treatments and outcome.
LuMind IDSC joins National Consortium to Create Important Covid-19/Down Syndrome Resource
The unprecedented spread of Coronavirus (COVID-19) presents the world with a unique challenge and calls for a united response to better understand its impact on the Down syndrome community. LuMind IDSC Foundation (LuMind IDSC) is proud to collaborate with Down Syndrome Medical Interest Group-USA (DSMIG-USA), Global Down Syndrome Foundation (GLOBAL), National Down Syndrome Congress (NDSC), National Down Syndrome Society (NDSS), and National Task Group on Intellectual Disabilities and Dementia Practices (NTG) and Down syndrome medical experts to publish a new resource.
Press Release on COVID-19 and Down Syndrome National Down Syndrome organizations combine efforts to publish Q&A
Abbreviated Q&A on COVID-19 and Down Syndrome Top 12 Q&A about COVID-19 and Down syndrome
Expanded Q&A on COVID-19 and Down Syndrome Longer list of questions about COVID-19 and Down syndrome
You may also download the abbreviated Q&A and expanded Q&A PDFs files. We encourage you to share this resource broadly and for organizations to post it on their websites.
We encourage you to submit any further questions or comments to us at T21COVID@LuMindIDSC.org. We will share with the collaborating group and review as part of regular future updates of this resource. Our collective efforts will strengthen the community’s access to valuable resources to stay safe and healthy.
COVID-19 and Preserving Human Rights for People with Down Syndrome
As medical systems plan for a possible flood of COVID-19 patients, healthcare professionals in the United States may draft guidance to ration care in order to ensure the largest number of people will survive the pandemic. However, LuMind IDSC has read reports of at least two cases from Alabama and Washington State where the guidance could limit access to needed care for people with disabilities, including those with Down syndrome, in violation of non-discrimination laws. Several organizations, led by the Arc and The Center for Public Representation, recently filed complaints with the U.S. Department of Health and Human Services Office for Civil Rights (OCR).
LuMind IDSC is coordinating with other leading Down syndrome organizations to prevent discrimination in the provision of care and treatments for people with Down syndrome. Read more here.
Q&A on COVID-19 and Down Syndrome with Dr. Nicole Baumer
April 1, 2020
#T21COVID Hashtag on Social Media
Along with other Down syndrome organizations, LuMind IDSC has adopted the hashtag #T21COVID on social media (Facebook, Instagram, LinkedIn and Twitter) so that families can easily identify information on COVID-19 and Down syndrome.
Below is a link of relevant information from experts in the Down syndrome community. This listing will be updated as new information is released.
March 12, 2020
Early information out of China, where COVID-19 first started, shows that some people are at higher risk of getting very sick from this illness. This includes:
People who have serious chronic medical conditions like:
If a COVID-19 outbreak happens in your community, it could last for a long time. (An outbreak is when a large number of people suddenly get sick.) Depending on how severe the outbreak is, public health officials may recommend community actions to reduce people’s risk of being exposed to COVID-19. These actions can slow the spread and reduce the impact of disease.
If you are at higher risk for serious illness from COVID-19 because of your age or because you have a serious long-term health problem, it is extra important for you to take actions to reduce your risk of getting sick with the disease. Read more
March 12, 2020
Based on available evidence, children do not appear to be at higher risk for COVID-19 than adults. While some children and infants have been sick with COVID-19, adults make up most of the known cases to date. You can learn more about who is most at risk for health problems if they have COVID-19 infection on CDC’s current Risk Assessment page. Read more
These unprecedented times due to the Coronavirus (COVID 19) pandemic necessitates the need to stay home and practice social distancing. With schools closures, parents working remotely, and families staying at home, we find ourselves more socially isolated. We have compiled a list of online resources that may be helpful to families as more of us turn to online resources for both education and entertainment during these challenging times.
The U.S. Food and Drug Administration is issuing warning letters to firms for selling fraudulent products with claims to prevent, treat, mitigate, diagnose or cure coronavirus disease 2019 (COVID-19). They are actively monitoring for any firms marketing products with fraudulent COVID-19 prevention and treatment claims. An active listing of warning letters can be found on their website.
The World Health Organization (WHO) has created a Myth Busters page on their website to distinguish fact from myth.
WHO has also refuted viral claims that holding your breath can test for COVID-19. Facebook posts shared thousands of times claim that holding your breath for more than 10 seconds is an effective test for the novel coronavirus, and that drinking water regularly can prevent the disease. The claims are false; the World Health Organization and other experts said there was no evidence to support these claims.
Hackers are making fake coronavirus tracking apps that are actually ransomware, claiming to leak social media accounts and delete a phone’s storage unless a victim pays $100 in bitcoin. The concerns surrounding the coronavirus outbreak are being exploited by hackers taking advantage of people’s thirst for information. An Android app called “COVID-19 Tracker” is just one example of ransomware that masks itself as a real-time coronavirus map tracker, according to researchers.
March 10, 2020
Dr. Andrew Norwalk talks in this podcast about the novel Coronavirus (COVID-19) and, more specifically, about what the Down syndrome community needs to know about this virus. He discusses those with Down syndrome who may be at higher risk of serious illness due to underlying medical conditions.