COVID-19 Resources

Numerous organizations and agencies have issued documents and advisories related to COVID-19 and dementia, and COVID-19 and intellectual disability.  We are posting these resources here so they are easily accessible.  Please check back frequently for updates.

General Information

National Alliance for Direct Support Professionals (NADSP)

The National Alliance for Direct Support Professionals (NADSP) has put together a free toolkit of webinars and resources for Direct Support Professionals (DSPs) who are on the front lines.

CDC American Sign Language COVID-19 Informational Videos

Eleven videos, created by the CDC, featuring a certified Deaf interpreter deal with managing COVID-19 at home, symptoms of the virus, prevention tips, risk factors, and what older adults need to know about COVID-19. Videos include closed captions.

Mental Health and COVID-19 resources:

National Down Syndrome Society page on COVID-19

Q&A on Down Syndrome and COVID-19

The Q&A has two versions, one a brief series of content answers, and another longer version covering numerous questions that have arisen.  The Q&A is directed toward families and others concerned with impact of COVID-19 upon persons with Down syndrome of all ages.

Mental health and psychosocial considerations during the COVID-19 outbreak 
WHO's Department of Mental Health's advisory on supporting mental and psychosocial well-being in different target groups during the outbreak.  To read advisory

LuMind IDSC Foundation information page on COVID-19 and Down syndrome

COVID-19, Intellectual Disability, & Rights

NYS DoH Advisory on Hospital Visitation and Agency Support Staff
On April 10, 2020, the New York State Department of Health issued an updated health advisory regarding hospital visitation restrictions. Hospitals are required to permit a patient support person at the patient bedside for "Patients for whom a support person has been determined to be essential to the care of the patient (medically necessary) including patients with intellectual and/or developmental disabilities and patients with cognitive impairments including dementia." To read the advisory.

“We’re being punished again”: How people with intellectual disabilities are experiencing the pandemic 

A commentary on how the COVID-19 pandemic has 'exposing major cracks in the systems that protect Americans living with disabilities, particularly intellectual and developmental disabilities' living in group homes. Author notes that states’ policies could restrict the ability of persons with ID to get lifesaving treatment.  Read further.

Disability Rights California Statement on Discrimination Against People with Disabilities and COVID-19

DRS's statement calling for medical providers to end triaging medical cares and services due to a patient's disability. To read the statement.

COVID-19 Update: OCR issues bulletin on civil rights laws during public health emergency  

The Office of Civil Rights (OCR) bulletin reminds entities covered by civil rights authorities of their obligations under laws and regulations that prohibit discrimination on the basis of race, color, national origin, disability, age, sex, and exercise of conscience and religion in HHS-funded programs, including in the provision of health care services during the COVID-19 (coronavirus) pandemic.  For press release.

COVID-19 medical rationing

The Center for Public Representation has assembled a web page with numerous resource links and a state-by state listing of advocacy notices. To access the Center's webpage.

Australian organizations' public policy statement

The statement notes that in relation to COVID-19, people with intellectual or developmental disability are particularly vulnerable to adverse outcomes associated with COVID-19. Many individuals are within a high-risk category because of poor health status, low levels of health literacy, reliance on third parties to support access to care, and health and disability sectors that are not yet adequately equipped to meet their health needs. These groups, as people living with disability, are at further risk of prejudice and attitudinal biases that devalue their lives and deprioritize their access to preventative, screening and treatment measures for COVID-19.  Thus, the statement recommends that governments and leading health and disability organizations need to take urgent action to prepare and equip: (1) that all levels of the health care sector be able to work with these groups, and their support networks to prevent, screen, and treat COVID-19; and (2) that the disability sector be able to support the health care needs of these groups during this pandemic.

Mass. General Hospital Sheet on 'Re-entry Issues

Mass. General Hospital Down syndrome program has assembled some queries and answers for families on dealing with the re-entry process once stay-at-home restrictions are lifted.  To access the advice sheet, click here.

Resources on Dementia and COVID-19


COVID-19 and Pneumonia: Increased Risk for Individuals with Intellectual and Developmental Disabilities during the Pandemic

A report from the Lerner Center for Public Health Promotion at Syracuse Univerisity

     National Task Group on Intellectual Disabilities and Dementia Practices. © 2020                                                                        Edited 8/12/20

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