Welcome to the Research Corner, where we are sharing relevant research done related to COVID-19 and people with intellectual or developmental disabilities around the world.
“COVID-19 Infections And Deaths Are Higher Among Those With Intellectual Disabilities”. Shapiro, J. National Public Radio (NPR). https://www.npr.org/2020/06/09/872401607/covid-19-infections-and-deaths-are-higher-among-those-with-intellectual-disabili
Data gathered through government departments in Pennsylvania and New York indicate that fatality rates for people with COVID-19 and I.D. are over double that of the general population, in New York state, and slightly less than double in the state of Pennsylvania. The stats from Pennsylvania were compiled by the Office of Developmental Programs and included people with autism. In New York State the data was gathered through the New York State Office for People with Developmental Disabilities.
“COVID-19 and Pneumonia: Increased Risks for Individuals with Intellectual and Developmental Disabilities during the Pandemic”. Landes, S. et. Al.(April 27, 2020). Lerner Center for Public Health and Promotion. https://lernercenter.syr.edu/2020/04/27/covid-19-and-pneumonia-increased-risk-for-individuals-with-intellectual-and-developmental-disabilities-during-the-pandemic/
Dr. Scott Landes, a Professor of Sociology at the Syracuse University has also been gathering data on this population from state and private research groups. His findings point to people with I.D., who live in group homes, as having a higher death rate than Hispanics and Blacks. People with I.D., in group living arrangements, have some of the highest death rates in the country. The possible factors that may be contributing to these findings are the fact that people with I.D. have more pre-existing co-morbidities than the general population. They are living in group arrangements so may have no way of effectively self-isolating and the staff that support them do not have enough PPE, work for low wages and are not seen as essential workers.
“Intellectual and developmental disability and COVID-19 case-fatality trends: TriNetX analysis”. Turk, M. et al (May 2020). Disability and Health Journal
There is the possibility of people with IDD being at higher risk of experiencing a greater severity of symptoms from COVID-19 and higher death rates. This hypothesis is tied directly to evidence that people with IDD have higher rates of health conditions than the general population, across all age groups, that are associated with increased severity and death from the virus.
This research confirms what has become evident in researching the impact of COVID-19 on people with IDD and that is that countries do not have adequate or any surveillance structures to track the impact of COVID-19 within this population.
There are two reports out of Europe that contain some relevant data. The Netherlands has an online database that registers cases of COVID-19 for people with IDD and in May 2020 that database indicated almost identical death rates between people with IDD and the general population. During that same period, the Swedish National Board of Health and Welfare reported that people with IDD, receiving government support for housing, had a lower death rate than the general population.
The database utilized for this research, the TriNetX COVID-19 Research Network, is a global network of data taken from electronic medical records across 42 health care organizations. That database, however, has a much higher representation from the US than from other countries.
Data indicates that, compared to the general population, there is a higher incidence of the virus amongst people with IDD in the 0-17 age range and a lower incidence in the 75+ age range. The percentage of overall deaths from COVID-19 increased with age, like in the general population, but this peaked between the ages of 17-74 rather than 75+.
“Guidance for the Treatment and Management of COVID-19 Among People with Intellectual Disabilities”. Alexander, R et al., Journal of Policy and Practice in Intellectual Disabilities. June 10, 2020, https://doi.org/10.1111/jppi.12352
People with an intellectual disability (I.D.) often have multiple health issues, higher mortality rates and they die at a younger age. The primary causes of death for people with I.D. include respiratory diseases, including pneumonia, heart disease and cancer and there is a higher rate of swallowing difficulties which lead to aspiration pneumonia. This group also experiences higher rates of mental health challenges and behavioural challenges. Health care providers tend to attribute the actions, reactions and symptoms experienced by people with I.D. to their disability instead of exploring other health factors. All of these issues mean that people with I.D. have poorer access to health care in general and will be much more disadvantaged during the COVID-19 pandemic.
In this paper, it is recommended that mental health and challenging behaviours need to be part of considering who is at high risk during COVID and this, in conjunction with the other above mentioned issues, should lead to many people with I.D. being assessed as being at high or very high risk of illness due to COVID. It is acknowledged, however, that those very protocols that are put in place to protect the safety of people, such as isolation and social distancing, may worsen mental health and behavioural issues.
Risk mitigation strategies:
- Everyone should have up to date hospital passports. These passports should be created in conjunction with the person and their support network. They should contain all relevant information that is important to the individual such as care preferences, health information and communication strategies.
- COVID-19 Care Plans – This document is designed specifically with COVID-19 in mind and covers the individual’s specific risk factors (i.e. diabetes, COPD, Schizophrenia), health care wishes, communication needs, effective support strategies and the person’s end of life wishes.
- Keeping family members and other carers involved. Engaging them in providing explanations and information to the person with I.D. Making sure they are knowledgeable in what to monitor.
- Capacity and law – It is important to highlight that if someone with I.D. has the capacity they make their own decisions including those to not follow recommendations. Pandemic laws are applicable to everyone, including those with I.D. Any conversations around restrictions need to balance protection with quality of life.
- Social distancing –All people with I.D. should avoid public transportation, stay at home and stay away from anyone with COVID-19. Anyone who falls into a high or very high-risk category should have no contact with people who are symptomatic, they should never take part in group gatherings or go into public spaces and they should have their food and medications delivered. It is important, however, to acknowledge that these changes, such as not accessing the community, are likely to increase mental health issues and behavioural challenges and so people with these issues need to have care plans that take this into consideration. This may require the design of support plans that incorporate infection control steps that allow for some access to the community. Support networks need to be a part of these conversations and everyone needs to balance the various risks.
- Do Not Resusitate (DNRs) – It is essential that people at very high risk have an advanced care plan in place that details their preferences and priorities. Discussions should occur around decisions to be made if the person reaches a point where they may no longer be able to benefit from intrusive treatments related to COVID-19 such as intubation.
- Ceiling of care/treatment escalation plan – People and their support networks should indicate wishes should the person get COVID -19. Do they continue to stay at home, at what point is hospitalization appropriate? Is full care and interventions part of the plan or would the person, at some point, be considered palliative and remain at home?
- Mental health and challenging behaviour – It is essential that any relapse in mental health concerns not just be attributed to existing mental health issues and that all potential medical concerns are explored. As already mentioned, someone with I.D. who is suspected of having COVID-19 or who has tested positive will be exposed to restrictions that may increase their mental health and/or behavioural issues. People with I.D. and mental health and behavioural challenges must be considered at high risk of severe illness due to COVID-19 and behavioural support plans should be revised with this in mind. On the other hand, emotional reactions to COVID-19 related issues are often normal reactions and should not be seen as unhealthy or abnormal.
- PPE – The equipment worn in order to prevent the spread of COVID impairs both verbal and non-verbal communication. This means that people who are supporting individuals with I.D. must make greater use of their eyes, gestures, tone of voice and other sources of non-verbal communication. Other suggestions include introducing yourself, putting a picture of yourself on your protective clothing and double-checking to make sure your message has been understood.
In conclusion, this paper emphasizes the importance of the early recognition of the symptoms of COVID-19. If someone is hospitalized there must be the transfer of good quality information such as a health passport and a COVID care plan and they must be accompanied by someone who knows them well.