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.
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.
The Arc COVID-19 Resource Page
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
Gerontological Society of America site - COVID-19 Resources
COVID-19, Intellectual Disability, & Rights
Visitation at Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IIDs) and Psychiatric Residential Treatment Facilities (PRTFs) - Coronavirus Disease -2019 (COVID-19)
CMS has noted that ICF/IID facilities should promote and may not restrict visitation without a reasonable clinical or safety cause, consistent with requirements at 42 CFR 483.420(a) (“Standard: Protection of clients’ rights.”) and 42 CFR 483.420(c) (“Standard: Communication with clients, parents, and guardians.”). This document spells out the rights of residents and visitors. Issued February 10, 2021.
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
Massachusetts General Hospital's Down Syndrome Program has assembled some queries and answers for families on dealing with the re-entry process when stay-at-home restrictions are lifted. To access the advice sheet, click here.
Resources on Dementia and COVID-19
Alzheimer's Association page on Coronavirus (COVID-19): Tips for Dementia Caregivers
Alzheimer's Association page on Coronavirus (COVID-19): Tips for Dementia Caregivers in Long-Term or Community-Based Settings
Alzheimer's Society (UK) page of Coronavirus: Supporting a Person with Dementia at Home
Alzheimer Europe page on COVID-19 and Intellectual Disabilities
National Alzheimer's Project Act page on Resources on COVID-19
Lancet article on Dementia Care During COVID-19
Irish Guidance and Practical Resource Pack in Preparation for COVID Vaccination Programme
'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 University
Impact of COVID-19 on Provider Organizations Serving Adults with Intellectual and Other Disabilities
Report of a survey of US provider organizations re: impact of COVID-19 and people with intellectual and developmental disabilities. The report is the result of a collaboration among the NTG, HealthMattersTM Program, the YAI, and ACCSES.
NTG Bibliography on COVID-19 and Intellectual Disabilities
Bibliography of a number of journal articles and other print and web resources
specifically addressing COVID-19 and intellectual disabilities. These publications stem from 2020 to the present and represent the product of an extensive search via the web. The bibliography is being updated periodically, so check back for the latest version. The bibliography is the effort of a joint project between the NTG and the Health Matters Program's Healthy Brain Initiative (funded by a grant from the CDC).
AAIDD Research Brief - State of the Science on COVID-19 and People with IDD
This brief provides an overview of what the research to date reveals about people with intellectual and developmental disabilities (IDD), COVID-19, and vaccination. The research to date indicates that people with IDD (a) are more likely to be exposed to COVID-19 and have poorer COVID-19-related health outcomes than the general public; (b) are as likely as the general population to engage in preventive health strategies; and (c) have experienced massive disruption in health, home, and community services, exacerbating existing inequities in health care, and putting additional pressure on already over-taxed formal and informal support networks.
Guidance and Practical Resource Pack in Preparation for Covid-19 Vaccination Programme in Disability Services
This guidance and practical support pack was been developed in Ireland for the national Disability Services in preparation for the roll out of the national COVID-19 vaccination program.The guidance was developed in accordance with national guidelines and legislation, and on the basis that those who provide health and social care services must work on the presumption that every person who uses our services has the capacity to make decisions about whether or not they wish to consent to the COVID-19 vaccination.