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      The COVID-19 pandemic and quality of life outcomes of people with intellectual and developmental disabilities

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          Abstract

          Background

          People with intellectual and developmental disabilities (PWIDD) are contracting and dying of COVID-19 at significantly greater rates than nondisabled people and people with other disabilities. Despite the increased risk of COVID-19 for the IDD community, there has been less attention drawn to the impact of the pandemic on people with IDD, especially beyond their health and safety. Yet, PWIDD also face unique challenges as a result of the pandemic compared to other populations.

          Objective

          The purpose of this study was to explore the impact of the COVID-19 pandemic on the quality of life outcomes of PWIDD.

          Methods

          We conducted a secondary analysis of Personal Outcome Measures® interviews from 2019 to 2020 ( n = 2284).

          Results

          There were significant differences in the following quality of life outcomes of PWIDD between 2019 and 2020: continuity and security; interact with other members of the community; participate in the life of the community; intimate relationships; and, choose goals.

          Conclusions

          Our findings suggest the COVID-19 pandemic has negatively hindered the quality of life outcomes of PWIDD in a number of different areas. While the pandemic has been undoubtably hard on the IDD community, in many ways it has simply intensified an underfunded and fractured IDD service system. However the IDD service system evolves during and after the pandemic, it must be done in a way that prioritizes the quality of life of PWIDD and what is most important to them.

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          Most cited references24

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          Intellectual and Developmental Disability and COVID-19 Case-Fatality Trends: TriNetX Analysis

          Background Despite possibly higher risk of severe outcomes from COVID-19 among people with intellectual and developmental disabilities (IDD), there has been limited reporting of COVID-19 trends for this population. Objective To compare COVID-19 trends among people with and without IDD, overall and stratified by age. Methods Data from the TriNetX COVID-19 Research Network platform was used to identify COVID-19 patients. Analysis focused on trends in comorbidities, number of cases, number of deaths, and case-fatality rate among patients with and without IDD who had a positive diagnosis for COVID-19 through May 14, 2020. Results People with IDD had higher prevalence of specific comorbidities associated with poorer COVID-19 outcomes. Distinct age-related differences in COVID-19 trends were present among those with IDD, with a higher concentration of COVID-19 cases at younger ages. In addition, while the overall case-fatality rate was similar for those with IDD (5.1%) and without IDD (5.4%), these rates differed by age: ages 75– IDD 21.1%, without IDD, 20.7%. Conclusions Though of concern for all individuals, COVID-19 appears to present a greater risk to people with IDD, especially at younger ages. Future research should seek to document COVID-19 trends among people with IDD, with particular attention to age related trends.
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            COVID-19 Outcomes among People with Intellectual and Developmental Disability Living in Residential Group Homes in New York State

            Background People with intellectual and developmental disabilities (IDD) may be at higher risk of severe outcomes from COVID-19. Objective To describe COVID-19 outcomes among people with IDD living in residential groups homes in the state of New York and the general population of New York State. Methods Data for people with IDD are from a coalition of organizations providing over half of the residential services for the state of New York, and from the New York State Department of Health. Analysis describes COVID-19 case rates, case-fatality, and mortality among people with IDD living in residential group homes and New York State through May 28, 2020. Results People with IDD living in residential group homes were at greater risk of severe COVID-19 outcomes: case rates – 7,841 per 100,000 for people with IDD compared to 1,910 for New York State; case-fatality – 15.0% for people with IDD compared to 7.9% for New York State; and mortality rate – 1,175 per 100,000 for people with IDD compared to 151 per 100,000 for New York State. Differences in cases and mortality rate were confirmed across regions of the state, but case-fatality rate was only higher for people with IDD in and around the New York City region. Conclusions COVID-19 appears to present a greater risk to people with IDD, especially those living in congregate settings. A full understanding of the severity of this risk will not be possible until US states begin publicly sharing all relevant data they have on COVID-19 outcomes among this population.
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              Defining social inclusion of people with intellectual and developmental disabilities: an ecological model of social networks and community participation.

              Social inclusion is an important goal for people with intellectual and developmental disabilities, families, service providers, and policymakers; however, the concept of social inclusion remains unclear, largely due to multiple and conflicting definitions in research and policy. We define social inclusion as the interaction between two major life domains: interpersonal relationships and community participation. We then propose an ecological model of social inclusion that includes individual, interpersonal, organizational, community, and socio-political factors. We identify four areas of research that our ecological model of social inclusion can move forward: (1) organizational implementation of social inclusion; (2) social inclusion of people with intellectual and developmental disabilities living with their families, (3) social inclusion of people along a broader spectrum of disability, and (4) the potential role of self-advocacy organizations in promoting social inclusion.
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                Author and article information

                Journal
                Disabil Health J
                Disabil Health J
                Disability and Health Journal
                Elsevier Inc.
                1936-6574
                1876-7583
                18 May 2021
                October 2021
                18 May 2021
                : 14
                : 4
                : 101117
                Affiliations
                [1]CQL, The Council on Quality and Leadership, 100 West Road, Suite 300, Towson, MD, 21204, USA
                Author notes
                []Corresponding author:
                Article
                S1936-6574(21)00063-7 101117
                10.1016/j.dhjo.2021.101117
                8436150
                34144897
                04226fe7-3567-48e3-a1ee-42d42b4f80ab
                © 2021 Elsevier Inc. All rights reserved.

                Since January 2020 Elsevier has created a COVID-19 resource centre with free information in English and Mandarin on the novel coronavirus COVID-19. The COVID-19 resource centre is hosted on Elsevier Connect, the company's public news and information website. Elsevier hereby grants permission to make all its COVID-19-related research that is available on the COVID-19 resource centre - including this research content - immediately available in PubMed Central and other publicly funded repositories, such as the WHO COVID database with rights for unrestricted research re-use and analyses in any form or by any means with acknowledgement of the original source. These permissions are granted for free by Elsevier for as long as the COVID-19 resource centre remains active.

                History
                : 15 April 2021
                : 10 May 2021
                : 10 May 2021
                Categories
                Original Article

                covid-19,pandemic,quality of life,people with intellectual and developmental disabilities,personal outcomes

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