COVID-19 and Intellectual and Developmental Disabilities

Before administering the vaccine to persons with intellectual and developmental disabilities (IDD), a health care practitioner will have to obtain consent at the point of service. In Ontario, they will need a signed Ministry of Health and Long-Term Care screening and consent form and proof of consent. There may be insufficient time and resources for the health care practitioner administering the vaccine to go through the full informed consent process with the person with IDD. Caregivers play an essential role in facilitating the consent process.

Health care providers and caregivers could pro-actively use Easy-Read materials, social stories, and visual resources to:

• Explain what is meant by consent and why it is needed in the current context.
• Explain information about the vaccine, including benefits, risks, and burdens. Discuss what it means if they decide not to get the vaccine.
• Ask if the person with IDD has questions.
• Provide Substitute Decision Makers with all information needed to decide.
• If no Substitute Decision Maker is available or willing to sign, in Ontario, the person with IDD can appoint a Power of Attorney for Health Care. If this is not possible, contact the office of the Ontario Public Guardian and Trustee.
• Provide and prepare the COVID-19 vaccine screening and consent form consent forms that are dated and signed on the day of each vaccine.
• As for other healthcare decisions, we recommend a “promoting capabilities” approach to the decision to receive the vaccine.
• With needed supports and accommodations, many adults with IDD who are not independently capable of making this decision will meet the “understand and appreciate” test of legal capacity even in jurisdictions that do not have Supported Decision Makers legislation.
• The capacity threshold for a person with IDD to appoint a Power of Attorney for Healthcare is lower than for making a healthcare decision.
• If a person with IDD is deemed incapable of the decision to receive the vaccine and is non-assenting, seek additional assistance to determine and address the basis for the person’s non-assent (e.g., Behaviour Therapist to address needle phobia, Occupational Therapist to address sensory needs, clinical ethics, and legal inputs).

Anyone who becomes severely ill from COVID-19 will be incapable of making decisions regarding their care while ill. This is also true for people with intellectual and developmental disabilities (IDD). Given this, it is important that people with IDD be engaged in COVID-19 Advanced Care Planning that anticipates that types of healthcare decisions that will need to be made should they become ill and hospitalized. People with IDD can participate as much as possible in such planning. They do not need to pass a legal test of capacity to be involved. In Canada, these plans are not regarded as advance directives. Rather, such discussions and plans are meant to inform future decisions made by the person’s Substitute Decision Maker when the person becomes incapable. In some jurisdictions, people with IDD have been given a do not resuscitate order as an advanced directive without any engagement of the person in this decision. Ethically, this is an example of ableism that results in the unwarranted exclusion of people with IDD from healthcare decisions.

Those involved in the health care of a person with IDD should be familiar with the roles of a supportive and substitute decision maker and the importance of responding from the point of view of the person’s will and preferences. They should be able to assess the person with IDD’s decision making capability. They should advocate for the person with IDD by challenging ableist biases and inappropriately technical language.

Learn more about Advance Care Planning for Adults with Developmental Disabilities During the COVID-19 pandemic in the video below:

Yes, adults with intellectual and developmental disabilities (IDD) and their caregivers should be prioritized for COVID-19 vaccination. Research has shown that adults with IDD are at higher risk of severe COVID-19 disease outcomes and are more likely to die of COVID-19 than those without IDD. In addition, the current public health measures (e.g., isolation, physical distancing, wearing masks), are often very challenging for people with IDD and have a detrimental effect on their mental health and wellbeing. For a detailed explanation of why this group should be prioritized for COVID vaccination in Canada read the resources below.

References

• Campanella, S., Rotenberg, S., Volpe, T., Balogh, R., and Lunsky, Y. (January 21, 2021). Including People with Developmental Disabilities as a Priority Group in Canada’s COVID-19 Vaccination Program: Key Considerations. Blog post at Health Care Access Research and Developmental Disabilities, CAMH, Toronto, ON.
• Inclusion Canada (January 19, 2021). Call on governments to prioritize people with developmental disabilities, their families and support staff for COVID-19 vaccine

Thus far, few studies reported on the perspectives of people with intellectual and developmental disabilities (IDD) during the pandemic. Researchers in Spain surveyed 582 adults with IDD about the effect of the pandemic and public health measures on their typical supports. Participants reported on the loss of social contact, recreational activities, and changes in work and academic activities. How their supports changed depended very much on the person’s living context. Those living in specific settings had fewer natural supports, and those living with their family relied heavily on the family to address their needs because of service closures. It should be noted that people with IDD also provided support to others, such as family members, roommates, and friends.

What does this information mean?

• Consider a person with IDD’s living circumstances when assessing changes in their support needs during the pandemic.
• For adults with IDD living at home, consider the additional stresses on and needed supports to family caregivers due to service closures.
• The act of supporting others can help in coping with pandemic stress. Encourage and empower people with IDD in their initiatives to be a support to their friends, family, and others

References

• Navas, P., Amor, A. M., Crespo, M., Wolowiec, Z., & Verdugo, M. Á. (November, 2021). Supports for people with intellectual and developmental disabilities during the COVID-19 pandemic from their own perspective. Research in Developmental Disabilities, 108. Download this publication.
• Researchers and advocacy groups in the UK are currently conducting a large study interviewing people with IDD and their caregivers on the effect of the COVID-19 pandemic on their lives. Follow the development and results of the UK Coronavirus and Learning Disability Study via their website, YouTube and social media @CoronavirusLD.

Family members, siblings, and other informal caregivers play an essential role in the support of adults with intellectual and developmental disabilities (IDD) during the COVID-19 pandemic. Many are worried about their family member with IDD and express worries about the disruption of routines and activities, emotional, physical, and mental wellbeing and about the future. For some families, it is now approaching a year of disruption of activities where most responsibilities are on the family with inadequate community supports.

The types of concerns depend on the living situation of the person with IDD. For example, siblings with a brother or sister with IDD living with family at home worry about having to provide care to both their parents and brother or sister. They also worry about parents falling ill with COVID-19 and not being able to provide care to their sibling. When a loved one lives in a supported residential setting, family caregivers have limited access, which is very stressful to all involved. There are some families who have not seen their loved one in person for almost a year.

Caregiving is increasingly stressful when a person with IDD shows increased challenging behaviours during lockdown measures and at the same time supports have decreased. Caregivers experience increased mental health problems during the pandemic, which not only presents a risk to themselves but also to those they care for.

What does this information mean?

• Consider supports needed for parents, siblings and other immediate family members when caring for an adult with IDD during a pandemic.
• Inform caregivers about supports, self-care strategies, and respite options. For example,
  • The Ontario Caregiver Organization provides resources, access to supports for caregivers in Ontario, and a 24/7 helpline.
  • The Sibling Collaborative is a Canadian national family support network for adults supporting brothers and sisters with an intellectual or developmental disability.
• Actively include siblings and other family members in efforts to disseminate COVID-19 health resources and information to adults with IDD.
• Provide resources to caregivers that facilitate advance care planning with the adult with IDD. For example, COVID-19 Advance Care Planning: A guide for caregivers of adults with intellectual and developmental disabilities.

References

• Rose, J., Willner, P., Cooper, V., Langdon, P. E., Murphy, G. H., & Stenfert Kroese, B. (May, 2020). The effect on and experience of families with a member who has intellectual and developmental disabilities of the COVID-19 pandemic in the UK: Developing an investigation. International Journal of Developmental Disabilities, 1-3. Download this publication.
• Willner, P., Rose, J., Stenfert Kroese, B., Murphy, G. H., Langdon, P. E., Clifford, C., . . . Cooper, V. (August, 2020). Effect of the COVID-19 pandemic on the mental health of carers of people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 33(6), 1523-1533. Download this publication.
• Redquest, B. K., Tint, A., Ries, H., & Lunsky, Y. (January, 2021). Exploring the experiences of siblings of adults with intellectual/developmental disabilities during the COVID-19 pandemic. Journal of Intellectual Disability Research, 65(1), 1-10. Download this publication. Download this publication

Many adults with Down syndrome have medical conditions that are known to cause higher risk for severe COVID-19 outcomes. Compared to the general population, they are more likely to have diabetes, obesity, heart disease, sleep apnoea, lung diseases, and dementia. Signs of frailty occur at a younger age than in the rest of the population.

Adults with Down syndromes are 4 times more likely to be hospitalized for COVID-19 illness and 10 times more likely to die of COVID-19. Those who are hospitalized have more severe disease and suffer more complications like sepsis and acute respiratory distress syndrome. Hospitalized patients with Down syndrome are also more likely to need mechanical ventilation than those without Down syndrome and stay longer in the hospital. The Centres for Disease Control (CDC) recognized people with Down syndrome as a high-risk population as of December 2020.

Once in the hospital for COVID-19, people with Down syndrome are more prone to superinfections, such as bloodstream infections and bacterial pneumonia. Bacterial pneumonia is a leading cause of death in Down syndrome. Co-morbidity and increased risk of complications such as bacterial infections can influence COVID-19 outcome in people with Down syndrome.

Lockdown measures can increase social isolation, depressive symptoms, and functional impairment in people with Down syndrome. Aggressive behaviours may decrease, but this could also be related to increase of negative and depressive symptoms.

*please note that COVID-outcomes for children with Down syndrome differ from those for adults.

What does this information mean?

• Consider adults with Down syndrome an at-risk population for severe COVID-19 outcomes.
• Specific prevention and management strategies and protocols are needed to minimize the effects of COVID-19 in the population with Down syndrome.
• Progression of sepsis in COVID-19 patients with Down syndrome must be closely monitored.
• Consider the negative impacts of isolation and lockdown measures and provide additional support and assistance in promoting social contact in alternative ways (e.g., video calling, physically distant walks).

References

• Down Syndrome Resource Foundation: https://www.dsrf.org/
• Global Down Syndrome Foundation: https://www.globaldownsyndrome.org/covid-19/
• Canadian Down Syndrome Society: https://cdss.ca/resources/covid19-information/
• Espinosa, J. M. (May, 2020). Down syndrome and COVID-19: A perfect storm? Cell Reports Medicine, 1(2). Download this publication.
• De Cauwer, H., & Spaepen, A. (May, 2020). Are patients with down syndrome vulnerable to life-threatening COVID-19? Acta Neurologica Belgica. Download this publication.
• Dard, R., Janel, N., & Vialard, F. (July, 2020). COVID-19 and Down’s syndrome: Are we heading for a disaster? European Journal of Human Genetics, 28(11). Download this publication.
• Villani, E. R., Carfì, A., Di Paola, A., Palmieri, L., Donfrancesco, C., Lo Noce, C., . . . Brusaferro, S. (August, 2020). Clinical characteristics of individuals with down syndrome deceased with CoVID-19 in Italy—A case series. American Journal of Medical Genetics, Part A, 182(12), 2964-2970. Download this publication.
• Clift, A. K., Coupland, C., Keogh, R. H., Hemingway, H., & Hippisley-Cox, J. (October, 2020). COVID-19 Mortality Risk in Down Syndrome: Results From a Cohort Study Of 8 Million Adults. Annals of internal medicine, M20-4986. Advance online publication. Download this publication.
• Malle, L., Gao, C., Hur, C., Truong, H. Q., Bouvier, N. M., Percha, B., . . . Bogunovic, D. (October, 2020). Individuals with down syndrome hospitalized with COVID-19 have more severe disease. Genetics in Medicine. Download this publication.
• Villani, E. R., Vetrano, D. L., Damiano, C., Paola, A. D., Ulgiati, A. M., Martin, L., . . . Carfì, A. (October, 2020). Impact of COVID-19-related lockdown on psychosocial, cognitive, and functional well-being in adults with down syndrome. Frontiers in Psychiatry. Download this publication.

There is little information about COVID-19 trends for adults with intellectual and developmental disabilities (IDD). UK data showed that people with IDD are 4-6 times more likely to die from COVID-19 than those without IDD, and evidence is growing across the world. Currently, there is no published Canadian data. Overall, people with IDD die at a younger age of COVID-19 than people with COVID-19 in the general population. People with IDD under the age of 18 are more likely to die from COVID-19 than young people without IDD. The outcomes of COVID-19 are more severe for people with IDD living in congregate settings and nursing settings with many residents. Death and hospitalization rates are dramatically higher for those with Down Syndrome.

[Audio]: Listen to an interview with researchers from Upstate Medical University and Syracuse University, Margaret Turk, MD and Scott Landes, PhD, explaining their findings on COVID-19 death rates in people with IDD: https://www.upstate.edu/hloa/2020/060520-turk-landes-interview.php

What does this information mean?

• People with intellectual and developmental disabilities should be identified among the vulnerable populations who should be considered a priority in planning for emergency preparedness and immunizations.
• Information about disability specific risks for COVID-19 (e.g., for Down Syndrome) should be used by policy makers, public health agencies, and health care providers to strategically protect vulnerable individuals.

Research considerations

• Detailed health surveillance data, including disability status and demographic information, is needed to understand the factors leading to more severe COVID-19 outcomes for people with intellectual and developmental disabilities.
• Available relevant data should be shared publicly during an emerging pandemic.

References

• Turk, M. A., Landes, S. D., Formica, M. K., & Goss, K. D. (May, 2020). Intellectual and developmental disability and COVID-19 case-fatality trends: TriNetX analysis. Disability and Health Journal, 13(3). Download this publication
• Landes, S. D., Turk, M. A., Formica, M. K., McDonald, K. E., & Stevens, J. D. (June, 2020). COVID-19 outcomes among people with intellectual and developmental disability living in residential group homes in New York State. Disability and Health Journal, 13(4). Download this publication
• Clift, A. K., Coupland, C., Keogh, R. H., Hemingway, H., & Hippisley-Cox, J. (October, 2020). COVID-19 Mortality Risk in Down Syndrome: Results From a Cohort Study Of 8 Million Adults. Annals of internal medicine, M20-4986. Advance online publication. Download this publication
• Landes, S. D., Turk, M. A., & Wong, A. W. W. A. (December, 2020). COVID-19 outcomes among people with intellectual and developmental disability in California: The importance of type of residence and skilled nursing care needs. Disability and Health Journal. Download this publication
• Public Health England. Deaths of people identified as having learning disabilities with COVID-19 in England in the spring of 2020. (November, 2020). Available at https://www.gov.uk/government/publications/covid-19-deaths-of-people-with-learning-disabilities
• Joy, M., Richard Hobbs, F. D., Bernal, J. L., Sherlock, J., Amirthalingam, G., McGagh, D., . . . de Lusignan, S. (December, 2020). Excess mortality in the first COVID pandemic peak: Cross-sectional analyses of the impact of age, sex, ethnicity, household size, and long-term conditions in people of known SARS-CoV-2 status in England. British Journal of General Practice, 70(701), E890-E898. Download this publication
• Monthly COVID-19 data reports, including death rates, published by Sterker op Eigen Benen, Radboud University Medical Centre, Netherlands, available at https://www.sterkeropeigenbenen.nl/factsheet (accessed January 21, 2021)
• UK Government, Office for National Statistics, Updated estimates of coronavirus (COVID-19) related deaths by disability status, England: 24 January to 20 November 2020 (accessed Feb 23, 2021)

Many adults with intellectual and developmental disabilities (IDD) experience vulnerabilities that place them at risk of becoming severely ill if they develop COVID-19, including:

IDD severity: some people with IDD might have difficulty understanding and following preventive public health measures. Those who are non-verbal are less able to advocate for themselves.

Age: Adults with IDD die at a younger age (majority between 18 – 74 years), compared to the general population in which most deaths from COVID-19 occur above 75 years old. The case-fatality rate for people with IDD ages 0-17 is higher than for those without IDD.

Additional illnesses or health conditions: Adults with IDD are more likely than others to have underlying health conditions that are known to increase the risk of people being severely ill from COVID-19, including cardiovascular problems (e.g., hypertension, coronary heart disease, abnormal heart rate) diabetes, respiratory conditions, obesity, kidney disease, weak immune system dementia. Some reports on COVID-19 deaths in people with IDD also noted mobility impairments, mental health conditions, dysphagia, and epilepsy as co-morbidities.

Delayed diagnosis: Symptoms of COVID-19 might be missed in adults with moderate to severe disability who might be unable to communicate their symptoms to others or who might manifest them in less common ways than those without IDD (e.g., fatigue).

Residential settings: People living in congregate group-home settings are at higher risk of becoming infected if there is an outbreak in the home. Those who live independently might have difficulties accepting new precautions and resist restrictions on their outdoor or social activities, monitoring, or reporting new Acute Respiratory Infection symptoms. People who are supported by elderly or sole caregivers are at risk of losing their key supporter if these caregivers become ill with COVID-19 and need to self-isolate or be admitted to hospital.

What does this information mean?

• Provide accessible and easy to understand COVID-19 information and other supports necessary to help people with IDD adhere to public health measures.
• Age thresholds for prevention and management of COVID-19 disproportionately disadvantage people with learning disabilities.
• Priority must be given to supporting measures to prevent the spread of COVID-19 in congregate living settings and nursing care facilities with large numbers of residents.
• Create a crisis plan for those living with older parents, who are providing care and are at risk of severe illness form COVID-19.

Research considerations

• The current pandemic reveals the need for public health surveillance systems to include disability status as a basic demographic characteristic. Continued collection and reporting of robust data are essential to understanding the factors that lead to poorer outcomes for people with IDD.
• Knowledge about the factors leading to poorer COVID-19 outcomes for people with intellectual and developmental disabilities should be considered when developing and planning preventive and public health measures during a pandemic.

References

• Grier, E., Lunsky, Y., Sullivan, W., and Casson, I. (April, 2020). Health care of adults with intellectual and developmental disabilities in a time of COVID-19 Blog post in Canadian Family Physician. Download this publication.
• Perera, B., Laugharne, R., Henley, W., Zabel, A., Lamb, K., Branford, D., Courtanay, K., Alexander, R., Purandare, K., Wijeratne, A., Radhakrishnan, V., McNamara, E., Daureeawoo, Y., Sawhney, I., Scheepers, M., Taylor, G., & Shankar, R. (2020). COVID-19 deaths in people with intellectual disability in the UK and Ireland: descriptive study. BJPsych open, 6(6), e123. Download this publication.
• Landes, S. D., Turk, M. A., & Wong, A. W. W. A. (2020). COVID-19 outcomes among people with intellectual and developmental disability in California: The importance of type of residence and skilled nursing care needs. Disability and Health Journal. Download this publication.
• Turk, M. A., Landes, S. D., Formica, M. K., & Goss, K. D. (2020). Intellectual and developmental disability and COVID-19 case-fatality trends: TriNetX analysis. Disability and Health Journal, 13(3). Download this publication.

The key symptoms of COVID-19 (fever, new cough, loss of sense of smell or taste) may not be as clear in people with intellectual and developmental disabilities (IDD). Symptoms of COVID-19 might be missed in adults with moderate to profound levels of disability who might be unable to communicate their symptoms to others or who might show them in less common ways than those without IDD (e.g., fatigue).

A review of 50 COVID-19 deaths in adults with IDD showed a wide range of symptoms indicating that the person with IDD was unwell. The most frequently reported symptoms were difficulty breathing, cough, or fever. None of the reviews, however, mentioned that the person had lost their sense of smell or taste, although this is a key symptom in the general population. Some people with IDD are unable to report such symptoms verbally, and a loss of appetite might be a better indicator in this respect.

A Dutch study tracking and monitoring COVID-19 trends in adults with IDD report as the most common symptoms with a COVID-19 infection: fever (42%), fatigue (41%), nose cold/sneezing (40%), cough (38%) and shortness of breath (25%). A high prevalence of fatigue among infected adults with IDD was noted. Some adults with COVID-19 experience gastrointestinal symptoms such as diarrhea and nausea.

There can be other medical causes of these symptoms. Molecular or antigen tests for active novel coronavirus (PCR tests) are used to confirm a diagnosis of COVID-19.

What does this information mean?

• Watch for new respiratory infection symptoms, cough (usually dry), fever, and shortness of breath or any combination of these. Other less common or atypical symptoms associated with COVID-19 besides upper respiratory symptoms (runny nose, sore throat, headache) are lower respiratory symptoms (productive cough), fatigue, gastro-intestinal symptoms (diarrhea, nausea, vomiting), reduced sense of smell, muscle aches or confusion. For detailed information on COVID-19 symptom monitoring in residential care settings, see “COVID-19 Health Monitoring & Supportive Care in Home and/or Developmental Services Residential Care Settings”, Sector Pandemic Planning Initiative, Outbreak Management Working Group, Version 1.0- July 10, 2020 (Ontario resource).
• Health monitoring is important for some physically vulnerable persons with IDD without symptoms. It is also important for adults with IDD who might be unable to communicate new respiratory infection symptoms or might experience atypical symptoms. Alert their primary care provider as soon as new symptoms are noticed.
• Check for symptoms that might not be noticed or reported (e.g., fever). Measure body temperature once or twice a day before taking medications such as Tylenol. Temperatures above 38C or 1C above the person’s usual body temperature indicate a fever. Look also for the following behaviours in persons who are unable to report feeling unwell: looking flushed or pale, feeling hot or cool to the touch, being atypically fussy or groggy, having “goose bumps”, shivers or tremors, diarrhea, excessive sweating and/or being more thirsty than usual.
• Check for worsening respiratory infection symptoms especially in people with IDD who have COVID-19 and are physically vulnerable to developing severe illness (e.g., new continuous coughing, new shortness of breath, new rapid breathing at a rate of more than 25 breaths per minute at rest, or new rapid heart rate at a rate of more than 100 beats per minute at rest).
• For persons with challenges communicating, consider checking oxygen saturation levels twice daily if possible. A drop in oxygen saturation levels from usual levels (e.g., 93-100%) to less than 93% (or 5% below the person’s pre-illness level) is significant and a reason to call your primary care provider.

References

• Death from COVID-19 reviewed as part of the LeDer programme. (July, 2020). Heslop, P., Learning Disabilities Mortality Review (LeDer), University of Bristol, UK. Download this publication.
• Monthly COVID-19 data reports, including death rates, published by Sterker op Eigen Benen, Radboud University Medical Centre, Netherlands, available at https://www.sterkeropeigenbenen.nl/factsheet (accessed January 21, 2021)

There is very little information about COVID-19 case rates and disease outcomes for people with intellectual and developmental disabilities (IDD). A New York study showed an overall higher incidence (the number of confirmed cases per 100,000 people) of COVID-19 for people with IDD in residential group homes (7,841 per 100,000 people) compared to the state’s general population (1,910 per 100,0000). People with IDD living in care and nursing facilities with more residents have a substantially higher risk of testing positive for COVID-19 compared to those living in smaller settings, on their own, or with family. Higher transmission rates in care facilities could be due to limitations in physical distancing and reliance on assistance from care staff.

Recent studies from Scotland linking census data and COVID-19 test results, showed that adults with IDD were almost twice as likely to become infected with COVID-19 compared to those without IDD during the first wave of the pandemic.

What does this information mean?

• With limited data available, it is difficult to know whether increased case rates in group homes are due to the type of residential setting or other factors, such as age or underlying health conditions. Robust data collection and monitoring is needed to understand the risk factors that lead to poorer COVID-19 outcomes for people with IDD.

References

Landes, S. D., Turk, M. A., Formica, M. K., McDonald, K. E., & Stevens, J. D. (2020). COVID-19 outcomes among people with intellectual and developmental disability living in residential group homes in New York State. Disability and Health Journal, 13(4). Download this publication.  doi:10.1016/j.dhjo.2020.100969

Landes, S. D., Turk, M. A., & Wong, A. W. W. A. (2020). COVID-19 outcomes among people with intellectual and developmental disability in California: The importance of type of residence and skilled nursing care needs. Disability and Health Journal. Download this publication.

Henderson, A., Fleming, M., Cooper, A., Pell, J., Melville, C., MacKay, D., & Hatton, C. (February, 2021) COVID-19 infection and outcomes in a population-based cohort of 17,173 adults with intellectual disabilities compared with the general population. Online preprint.

When a person with intellectual and developmental disabilities (IDD) whom you care for shows worsening symptoms from COVID-19 he or she might have to be admitted to a hospital. Once Emergency Medical Services are activated (i.e., by calling 911), caregivers or support persons may not be able to accompany the person with IDD to the hospital.

The COVID-19 Hospital Transfer Form helps to share important information with hospital staff. Use the form to prepare, together with caregivers and the adult with IDD, for a possible transfer from home to the hospital. Fill in the form in advance of a person falling ill with COVID-19, so that it is prepared in the event of an emergency. Include the following information:

• Important medical information (e.g., allergies, diagnoses, medications)
• Substitute decision maker contact information
• Information about communication support needs
• Information about how to make the person in hospital feel calm and supported

Patients with COVID-19 who need communication tools and supports due to speech-related disabilities face greater risks of discrimination and isolation during this pandemic. Good communication is the single most important practice that reduces medical error. Communication Disabilities Access Canada developed a COVID-19 communication rights toolkit, with information about communication rights, tips on advocating for them, and an accommodation request form that caregivers and supporters can bring to the hospital.

What does this information mean?

• Encourage caregivers to prepare and share information with health care providers that will assist them in supporting and accommodating the special needs of a person with IDD. The information should include medical, communication and behavioral needs as well as details on substitute decision making. Use for example the COVID-19 Hospital Transfer Form.
• Educate hospital-based healthcare providers about the COVID-19 Hospital Transfer Form for adults with IDD. Hospital staff should ask for it or provide it to be completed on arrival of a patient with IDD and place it on the patient’s chart.

Many hospitals have restrictions for the visitation of COVID-19 patients. Visitation bans can prevent persons with an intellectual and developmental disabilities getting equal access to care. Support persons are not just visitors; they are a key part of a person with IDD’s care team. They can calm the person, facilitate communication with health care providers, and support a person in decision-making. The support person acts as a liaison between the family and hospital-based team.

Physicians can encourage support persons to advocate for a person with IDD’s right to accessible health care by creating awareness about disability rights and sharing resources with caregivers and support persons. It is important to collaborate with substitute decision maker (SDM), and others who know your patient well and are trusted by them. These relations should ideally begin before a person becomes ill and is admitted to hospital.

Information on the human right to accessible care during the pandemic

• The COVID-19 disability advisory group at the Government of Canada states that people with disabilities in Canada are entitled to have special considerations, adaptations and accommodations including essential support staff, interpreters or family members in most hospital settings including, acute hospital settings, long term care settings sand congregate residential settings.
• COVID-19 and the rights of persons with disabilities: guidance, United Nations, Human Rights Office of the High Commissioner, April 2020.
• The COVID-19 Pandemic and Rights of Persons with Disabilities, by the Library of Parliament, Canada, July 2020.
• Policy statement on the COVID-19 pandemic, Ontario Human Rights Commission, March 13, 2020.

Tools that help with advocacy for accommodations, including support visitors

• The Advocacy Toolkit by Arch Disability Law, Toronto, provides legal information and advocacy tips to people with disabilities in Ontario who need their support person, attendant or communication assistant to be with them in hospital during the COVID-19 pandemic. This information may not apply to you if you live outside of Ontario.
• COVID-19 Hospital Transfer Form, Developmental Disabilities Primary Care Program, Surrey Place, Toronto. Physicians can encourage patients and caregivers to fill out this form with information about the patient’s need. In the event of a hospital admission, this form should travel with the patient.
• COVID-19 Advance Care Planning: A guide for caregivers of adults with intellectual and developmental disabilities, Developmental Disabilities Primary Care Program, Surrey Place, Toronto. Physicians can encourage patients, substitute decision makers and other support persons to have a conversation about possible future hospital care for COVID-19. In the event of hospital admission, patients can bring this form that explains their values and preferences.

What does this information mean?

• Visit the hospital website to understand current hospital visitation rules. Contact someone in the patient and family services at the hospital to present concerns and problem solve.
• Inform caregivers and other support persons about the person with IDD’s right to accessible healthcare.
• Provide caregivers or support persons with a letter by their physician explaining the patient’s disability, communication and other special accommodation needs while in hospital, and why these accommodations are necessary.
• Provide caregivers or support persons with tools that help communicate a person’s needs, values, and preferences to hospital staff. See Tools and Resources.
• Educate hospital-based teams to encourage and value caregivers and family in the ability and skills they bring (knowledge of the past, communication, understanding moods, needs, wants, and fears) while still engaging the patient.
• If support persons feel they are not being listened to they, point them to disability advocate groups e.g., Inclusion Canada, People First of Canada.

Primary care has quickly adopted telehealth (phone, video) during the COVID-19 pandemic. These changes are welcomed by many. This approach to care, however, poses challenges for some adults with intellectual and developmental disabilities (IDD) who might lack access to technology, have complex health needs, or lack the skills or capacity to navigate the new way of interaction. Many are reliant on family or paid care professionals to facilitate patient-provider interactions during health care interactions. Sometimes families and paid staff are also unfamiliar with technology to navigate virtual care. Ensuring equitable, accessible, and ethically appropriate care for marginalized populations is key.

Some reported benefits of telehealth for adults with IDD are:

• Less exposure to communicable diseases for those who are medically at risk for COVID-19.
• Patient comfort. They can be seen in their natural environment, they can join and take a break from the conversation as needed, they can be in constant motion using the self-stimulation they need to self-regulate, they do not need to wear masks so they can see their health care provider’s face and they are not scrutinized for appearing not to cooperate with the mask protocol.
• Lower transportation costs and easier access to care for those with limited mobility.
• Ease of patient anxiety around health care settings (examining bed, otoscope, closed door), facilitating patients with behaviors that challenge in the health care setting.
• Elimination of the need for specific environmental accommodations that are sometimes impossible to control (e.g., odors, antiseptic, lights, noise).
• Building relationships with health care providers that later facilitate in-person visits.
• Facilitation of interdisciplinary care and gathering of care teams, including paid caregivers and family members.

Challenges for adults with the IDD population taking part in telehealth:

• Adults with IDD might have difficulty describing symptoms and options for physical examination are limited.
• Limited preventative health screening to a population already at risk for preventive care disparities.
• Risk of increased use of medication for behaviors that challenge because of the limited ability to do physical examination.
• Diagnostic overshadowing created by their IDD and behaviors that challenge.
• Privacy concerns for those who live in a group home or home setting where others are present outside the circle care.
• Technological challenges. Patients with IDD may live with their elderly parents or group home workers who do not have the skills to navigate the online visit.

What does this information mean?

Adapt the physical and mental telehealth exam for adults with IDD

• Use and adapt tools for the general population to get the most physical exam information out of your visit. (See references).
• Use photographs and videos in a secure manner to facilitate skin, seizure, and other diagnoses.
• Use assessment tools like the tools that can be emailed out to the patient prior to the visit (e.g., the Glasgow Depression and Anxiety Scale for mental health diagnoses).

Consider medical legal and ethical issues

• If the visit cannot be done as well in a telehealth setting as it would be in person, it should be an in person. In deciding on the type of visit (phone, in-person, video), consider whether the visit would be increasing disparities or health risks for the person with IDD.
• Document any efforts to make the encounter as safe and effective as it would be for a person without an IDD.
• If the patient lives in a medical desert and the telehealth visit is all you have to offer; it is better that the patient has some care, then none.
• As with the non-IDD patient, if you do not know or cannot see the patient (phone call), make sure it is the correct patient you are talking with and correct associated parties. This will lower the risk of a breach of confidentiality. This can be more challenging for people with IDD because there can be numerous parties on the call, or they may not be in a secure area.
• Consider the issue of consent when speaking with a paid support professional or caregiver only. The person with IDD or a substitute decision-maker should be involved in treatment decisions as much as possible.
• Pay specific attention to privacy. Many adults with IDD are living in shared housing or congregate settings where it might be harder to find privacy for a virtual health care visit.

References

• Virtual Care Resources, Temerty Faculty of Medicine, University of Toronto, Continued Professional Development: https://www.cpd.utoronto.ca/covid-19/virtual-care/
• Benziger, C. P., Huffman, M. D., Sweis, R. N., & Stone, N. J. (2021). The telehealth ten: A guide for a patient-assisted virtual physical examination. American Journal of Medicine, 134(1), 48-51. Download this publication.
• Greenhalgh, T., Koh, G. C. H., & Car, J. (2020). Covid-19: A remote assessment in primary care. The BMJ, 368. Download this publication.
• Lunsky, Y., Bobbette, N., Selick, A., & Jiwa, M. I. (2021). “The doctor will see you now”: Direct support professionals’ perspectives on supporting adults with intellectual and developmental disabilities accessing health care during COVID-19. Disability and Health Journal. Download this publication.
• Santoro, S. L., Donelan, K., Haugen, K., Oreskovic, N. M., Torres, A., & Skotko, B. G. (2021). Transition to virtual clinic: Experience in a multidisciplinary clinic for Down syndrome. American Journal of Medical Genetics, Part C: Seminars in Medical Genetics, Download this publication.  
• Annaswamy, T. M., Verduzco-Gutierrez, M., & Frieden, L. (2020). Telemedicine barriers and challenges for persons with disabilities: COVID-19 and beyond. Disability and Health Journal, 13(4). Download this publication.
• Nadkarni, A., Hasler, V., AhnAllen, C. G., Amonoo, H. L., Green, D. W., Levy-Carrick, N. C., & Mittal, L. (2020). Telehealth during COVID-19—Does everyone have equal access? American Journal of Psychiatry, 177(11), 1093-1094. Download this publication.
• Constantino, J. N., Sahin, M., Piven, J., Rodgers, R., & Tschida, J. (2020). The impact of COVID-19 on individuals with intellectual and developmental disabilities: Clinical and scientific priorities. American Journal of Psychiatry, 177(11), 1091-1093. Download this publication.

Advance care planning is a process that promotes person-centred care of patients by clarifying their present goals and values, and their preferences for future health care. It is recommended that adults with intellectual and developmental disabilities (IDD), especially those who are physically vulnerable to developing severe Acute Respiratory Infection symptoms related to COVID-19, have an updated COVID-19 Advance Care Plan. This process involves conversations between the person’s substitute decision maker, a healthcare provider, and others who know him/her well, whom the person trusts, and who are willing to support this process. The plan also specifies the person who is willing and able to take on the role of substitute decision maker if the person with IDD is incapable of consenting to a proposed treatment.

What does this information mean?

• Begin the advance care planning process as soon as possible, especially if the adult with IDD you care for is in a high-risk group for severe COVID-19 illness. The process of updating or doing advance care planning involves discussions and inputs from several people and it can be time-consuming.
• Include a summary of discussions of the person’s current goals and values. The plan can also include their input, as well as input from others, regarding treatment preferences related to treatment options for COVID-19.
• The plan might include specific directives regarding future treatments the person would or would not want. Such an Advance Care Plan will inform the substitute decision maker’s task of consenting to or refusing consent to the responsible in-hospital physician’s proposed levels of care or specific treatment plan at a time when the adult with IDD is incapable of providing such consent.
• Plan in the context of the COVID-19 pandemic. An Advance Care Plan and any related directives should foresee the possibility of an Acute Respiratory Infection from which most adults with IDD will recover. This is a different context from the one envisioned when most adults with IDD might have prepared an Advance Care Plan, namely regarding end-of-life care from a chronic and progressive health condition (e.g., Alzheimer disease). Neither an Advance Care Plan nor an Advance Directive gives or declines consent to specific treatments that might be proposed in the future. Such consent can only be given by a valid substitute decision maker whose decisions should be informed by and consistent with such plans.
• Update the plan as needed while the adult with IDD continues to be able to contribute. The adult with IDD does not need to meet the usual capacity test needed to consent to a treatment to participate in advance care planning.
• Develop or review an Advance Care Plan together with the person with IDD and others who know them well to ensure that their goals, values, and preferences for emergency and hospital treatments and end-of-life care are known and can be supported.

Plain language and visual materials can help in conversations with adults with intellectual and developmental disabilities. See the COVID resources section for social stories to facilitate your conversation, for example:

• Jack plans ahead for coronavirus: A guide for family and carers, by Book Beyond Words, Beyond Words, United Kingdom, 2020
• Going to the hospital with COVID-19 , by Surrey Place, Toronto, 2020
• When I am in the hospital with COVID-19, by Surrey Place, Toronto, 2020

It is important to think about and plan for several possible situations (“what if’s”), seeing the specific vulnerabilities of adults with intellectual and developmental disabilities (IDD), such as their environment and supporters. While COVID-19 Advance Care Plans are important for consent or refusal of consent to future proposed medical treatments, ‘what if’ or contingency plans have to do with other circumstances that are important to imagine in the context of the COVID-19 pandemic.

For example, think about:

• What to do when the adult with IDD for whom you care tests positive for COVID-19 and is physically vulnerable to developing severe illness. The plan would need to consider whether that person can be safely self-isolated in their current setting, monitored closely to identify worsening symptoms, and what should be done if the person’s symptoms worsen considering their Advance Care Plan. This could involve arranging in-home medical care and nursing supports.
• What to do if the adult with IDD who has severe mental-ill health or behavioural distress must do without their usual supports (e.g., some people living with Autism Spectrum Disorder)?

What does this information mean?

• Think about the possible situations that might occur when caring for a person with IDD during the pandemic (e.g., isolation when testing positive, loss of typical supports, loss of caregiver support) and develop contingency plans together with the adult with IDD, their primary care providers, and others involved in their care.
• Use accessible and easy read materials to discuss potential COVID-19 situations (see Tools and Resources).

Adults with intellectual and developmental disabilities (IDD) may find the testing procedures for COVID-19 challenging due to sensory issues or limited understanding of the reasons for testing.

You can support a person with IDD through the following strategies:

• Share plain language, social stories, and Easy Read materials to explain coronavirus and the purpose of the testing procedure (see Tools and Resources).
• Advocate for alternative means of testing (e.g., saliva test) with adults with IDD who cannot tolerate nasopharyngeal tests, which involve obtaining samples from deep inside the nose.
• Advocate for testing in specialized testing and care areas for COVID-19 that are accessible to people with limited mobility. When selecting a testing center to visit or refer to, consider phoning ahead and asking about physical accommodations for people with limited mobility.
• Some adults with IDD may show behaviours that challenge. Ensure that a support person who knows the person with IDD well is present during the testing procedure.
• For some adults with IDD the option of in-home testing is preferable and should be requested if needed.

In the absence of treatments and a vaccine, establishing and maintaining strict public health measures can help to slow down spread of the virus. Some of these public-health measures, however, cause significant hardships for people with intellectual and developmental disabilities (IDD). One factor might be that they have difficulty understanding why these measures are necessary.

You can help people with IDD understand COVID-19 and public health measures by using alternative and augmentative communication techniques. Head to our Tools and Resources section for a selection of materials that help in conversations about Coronavirus including, social stories, picture books, and Easy Read materials.

For any materials and techniques that you choose to use, make sure that they meet the person’s preferred communication method and level. Find helpful tips for health care providers about interacting with people with communication challenges at Communication Disabilities Access Canada and COVID-19 specific communication tips at Patient-Provider Communication.

Some people with IDD will just not be able to follow public health measures because of their disability. Encourage them to use an Exemption Card (examples at H-CARDD, CAMH).

References

Meltzer, A. (October, 2020). Public health crises and the need for accessible information. Medical Journal of Australia, 213(10), 478-478.e1. Download this publication