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Publications Library

COVID-19
This bibliography is a working document that contains select general population publications related to Long-COVID with possible implications for intellectual disability.  Currently, there is a dearth of publications related specifically to Long-COVID.  As they appear, they will be added to future versions of this bibliography.

Long-COVID and Intellectual Disability Bibliography

Working bibliography

Concerns over the impact of Long-COVID upon adults with intellectual  disability and the omission of clear guidance on this issue as lead the NTG to prepare an "Advisory on Long-COVID and Impact on Cognitive Function in Adults with Intellectual Disability."  The document is now available for download and use via this website.  The Advisory contains the NTG's position on this condition and addresses the background and definition of the cognitive aspects of Long-COVID, its symptoms and effects, what to look for with respect to symptoms, and what agencies and others can do to help adults affected by Long-COVID. The Advisory covers these main points: (1) Long-COVID can include ‘brain fog’ (problems with thinking, motivation, and carrying out life activities); (2) Adults with intellectual disability infected with the SARS-COV-2 variant virus may experience Long-COVID, (3) Partners, families, and agencies need to be on the ‘look-out’ for changes in cognitive functions that may be due to Long-COVID; (4) Screening and assessment should be undertaken to determine presence of Long-COVID; (5) Accommodations and adaptations should be put in place to help mitigate effects of Long-COVID.

Advisory on Long-COVID and its cognitive effects on adults with intellectual disability

NTG Statement

NTG Long-COVID Application for Direct Support Professionals

Application of the NTG Statement on LONG-COVID, Intellectual Disability, and Dementia to Direct Support Professionals

Resource document

CMS released this toolkit to combat the COVID-19 pandemic within nursing homes.  It is designed to aid nursing homes in the US to receive virtual technical assistance for homes that have an opportunity for improvement based on an analysis of previous citations for infection control deficiencies using publicly available data found on Nursing Home Compare. This effort augments the CMS's five-part plan to ensure safety and quality in America’s nursing homes and recent agency efforts to combat the spread of COVID-19 within these facilities.

CMS Best Practices Toolkit for Nursing Homes to Combat COVID-19

Reference

An updated COVID-19 and Down Syndrome Resources Guide is now available. Covered is new information on the Delta variant, current safety recommendations, and important updates useful to families, organizations, and adults with Down Syndrome.

COVID-19 and Down Syndrome Resources Guide

Resource document

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 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 Centers for Disease Control and Prevention). 

COVID-19 and Intellectual Disabilities Bibliography

Working bibliography - Current v1'6'23

The Irish COVID-19 Guidance and Practice Resource Pack (a practical support pack) was 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.

Guidance and Practical Resource Pack in Preparation for Covid-19 Vaccination Program in Disability Services

Resource document

This NTG statement, issued December 11, 2020, provides the rationale for placing adults with intellectual disability affected by Alzheimer’s disease and other causes for dementia on priority lists for receiving special consideration in mitigation strategies for managing the spread of COVID-19 and for receiving inoculation by vaccines designed to inhibit infections by the COVID-19 virus.

NTG Statement on COVID-19, Intellectual Disability, and Dementia

NTG Statement

AAIDD Research Brief: 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.

State of the Science on COVID-19 and People with IDD

Resource document

The aim of this internet-based survey was to obtain information from community-based organizations (CBOs) affiliated with ACCSES, a national provider association based in Washington DC, as to what types of difficulties provider agencies were encountering during a transitional phase of the coronavirus COVID-19 pandemic. The study was conducted in collaboration with the University of Illinois at Chicago in the summer of 2020.

Key Findings

- CBOs providing direct services noted experiencing contagion, lockdowns, loss of staff, challenges in obtaining PPEs, and lack of state or federal guidance.

- Maintaining safe living environments and coping with infected staff and clientele were urgent concerns.

- CBOs reported financial and clinical support challenges, as well as staffing problems.

- Testing availability, lack of sufficient PPEs, dealing with clientele and staff boredom during lockdowns, and increased costs for equipment and staff (with no commensurate increases in fees) were noted as problems.

- Re-opening challenges were reported, including funding, staffing, PPEs, liability, and lack of guidance. CBOs found ways to work-around some programmatic issues, by using telehealth, drive-by visits, instituting rigorous safety measures, and offering virtual services, when possible

NTG Collaborative Study of COVID-19 Impact on Provider Agencies

Research report

'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

Prevalence of Underlying Health Conditions in COVID-19 Infections - United States

Report

Report produced by the National Council on Disability reviewing effects of COVID-19 in congregate care settings

Strengthening the HCBS Ecosystem: Responding to Dangers of Congregate Settings
during COVID-19

Report

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