COVID-19 case-fatality disparities among people with intellectual and developmental disabilities: Evidence from 12 US jurisdictions.

BACKGROUND: There is evidence from two US states that people with intellectual and developmental disabilities (IDD) are at more severe risk during the COVID-19 pandemic. Research has not explored whether this increased risk is consistent across the US. OBJECTIVE: This study compared COVID-19 case-fatality rates among people with IDD in 11 states and the District of Columbia that are publicly reporting data. METHODS: Cumulative data reported through March 31 - April 13, 2021 were analyzed. Case-fatality rates and risk ratio with 95% confidence intervals for IDD settings were compared the overall case-fatality rate for the jurisdictions from Johns Hopkins' Center for Systems Science and Engineering COVID-19 data. RESULTS: Settings were reported as receiving any services, community or institutional residential services, or living in own/family home. Comparison of case-fatality rates between people with IDD and their respective jurisdiction populations demonstrates that case-fatality rates were consistently higher for people with IDD living in congregate residential settings (fifteen instances) and receiving 24/7 nursing services (two instances). Results were mixed for people with IDD living in their own or a family home (eight instances). CONCLUSIONS: These findings highlight that people with IDD, especially those living in residential settings, are experiencing higher case-fatality rates from COVID-19 than the general population across multiple US jurisdictions. Short-term and long-term public health interventions addressing COVID-19 risks will not be able to properly address the needs of people with IDD until all states begin reporting COVID-19 outcomes for this population.

Community Supports and COVID-19: Self-Determination in a Pandemic.

The coronavirus disease 2019 (COVID-19) is impacting people with intellectual and developmental disabilities (IDD) significantly. Early data on the impact of COVID-19 suggests that people with IDD are experiencing more severe health outcomes compared to the general population. In addition to their elevated health risks, people with IDD, like the rest of the population, are struggling with boredom, isolation, and loneliness as they shelter in place. As people with IDD seek a return to their jobs, friends and families, and the activities of their community, community-based provider organizations must strike a difficult balance between actions that are intended to protect the health and safety of people they support and actions that honor people's choices and encourage self-determination. Practical issues that community-based provider organizations must consider when striking the correct balance are discussed, and recommendations on ways to support people with IDD to make informed, self-determined choices during the pandemic are offered.

Cross-Systems Care Integration Impact on Adults With Intellectual Disability Utilizing Risk Weight and Comorbidity Data: A Comparative Effectiveness Study, 2014-2017.

Health disparities are documented between adults with intellectual and developmental disabilities (IDD) and neurotypical peers. As progress has been slow in improving health outcomes in people with IDD, the aim of this retrospective study was to compare effectiveness of a new Cross-Systems Care Integration (CSCI) model of care coordination to standard care coordination for 927 adults with IDD receiving Medicaid services in central Colorado from 2014 through 2017. Health care cost risk weight decreased (not statistically significant) only in individuals receiving the CSCI intervention. Depression diagnoses remained statistically unchanged, while both hypertension and hyperlipidemia significantly improved in patients receiving CSCI. Further study is warranted to extend duration of study and to examine additional study variables such as health-related quality of life.

Feedback and Strategies From People With Intellectual Disability Completing a Personalized Online Weight Loss Intervention: A Qualitative Analysis.

Coaching log notes for 15 participants from a 24-week blended online and telehealth randomized controlled trial were analyzed using thematic analysis and analyst triangulation to determine the factors that facilitated participant adherence to weight loss strategies, use of technology, and motivational interviewing. Several participants reported that restricting processed carbohydrates, limiting portion size, and maintaining healthy substitutions were effective nutritional strategies. Participants were less successful with adherence to their exercise goals, often due to time constraints and a lack of support. Results suggested consistent caregiver support improved participants' adherence to weight loss strategies and use of technology. Future programs should address obesity among people with intellectual and developmental disabilities by offering a range of interventions that are customized to their specific weight loss needs.

Healthcare for persons with intellectual and developmental disability in the community.

INTRODUCTION: While there has been impressive progress in creating and improving community healthcare delivery systems that support people with intellectual and developmental disabilities (IDD), there is much more that can and should be done. METHODS: This paper offers a review of healthcare delivery concepts on which new models are being developed, while also establishing an historical context. We review the need for creating fully integrated models of healthcare, and at the same time offer practical considerations that range from specific healthcare delivery system components to the need to expand our approach to training healthcare providers. The models and delivery systems, and the areas of needed focus in their development are reviewed to set a starting point for more and greater work going forward. CONCLUSION: Today, we celebrate longer life spans of people with IDD, increased attention to the benefits of healthcare that is responsive to their needs, and the development of important healthcare delivery systems that are customized to their needs. We also know that the growing body of research on health status offers incentive to continue developing healthcare structures for people with IDD by training healthcare providers about the needs of people with IDD, by establishing systems of care that integrate acute healthcare with long-term services and support, by developing IDD medicine as a specialty, and by building health promotion and wellness resources to provide people with IDD a set of preventative health supports.

Primary care: mental and behavioral health and persons with intellectual and developmental disabilities.

INTRODUCTION: There are multiple ways to address the mental and behavioral health needs of people with intellectual and developmental disabilities (IDD). METHOD: In this paper, we do not argue for a particular approach or set of approaches, but instead review the benefits of integrating mental and behavioral health supports with primary healthcare based primarily on our experience in and understanding of healthcare systems in the United States. It is estimated that between 35 and 40% of people with IDD also live with psychiatric disorders. NADD, an association for persons with developmental disabilities and mental health needs in the US holds that coexisting IDD and a psychiatric disorder interferes with a person's education and job readiness, and disrupts family and peer relationships. Historically, the presence of such disorders among people with IDD was not well understood or was discounted altogether. CONCLUSION: Over the past 15 years, however, greater attention is being paid to these comorbidities and their treatment, including the need to integrate mental and behavioral health treatments into primary care. Healthcare must account for multiple domains of quality of life, going beyond yearly physicals, and acute care visits, for example, to assess individuals' healthcare goals and support them in achieving those goals. While integrated healthcare delivery systems can be difficult to find and access for people with IDD, such approaches are more responsive to the comprehensive needs and desires of people with IDD.