Timely and appropriate COVID-19 care urgent for people with an intellectual disability

Posted on: 21 April 2020

It is vital that people with an intellectual disability (ID) get the care that they need during the COVID-19 pandemic, Professor Mary McCarron, Director of the Trinity Centre for Ageing and Intellectual Disability (TCAID) has said.

Professor McCarron commented

The response to the pandemic has identified many groups at risk. Those who are often least able to speak for themselves, people with intellectual disabilities, are not only at high risk but their unique needs are not getting enough attention


Older people with ID are vulnerable to the adverse outcomes associated with COVID-19, because many already have comorbidities (co-occurring diseases).  Older people with Down syndrome may be particularly at risk, as many have pre-existing cardiovascular and respiratory problems, confounded by a 55% risk of dementia in those age 55+ which increases to 88% in those age 65 years of age and older. However, having an intellectual disability in and of itself is not a risk for COVID-19, and we need to exercise caution not to introduce bias or stigma.


The risk factors for poorer outcomes and mortality are the same for everyone: underlying multi-morbidity is the key concern. Also, like everyone else, most people with ID who get COVID-19 will develop mild symptoms and will recover, some unfortunately will not and will die.  The added risk factors in terms of high levels of multi-morbidity in the ID population mean we need a heightened focus on prevention.


Older people with ID have smaller social networks and fewer social supports than the general population.  Disruption to their routines and contacts due to COVID-19 places them at greater risk for social isolation and loneliness, potentially leading to poorer mental health outcomes.  For those living at home with an ageing parent, themselves among the highest COVID-19 risk groups, Professor McCarron said:


There is a real worry about what might happen if someone in the house becomes ill.  And that’s why it is so important to put support in place so that health services can act quickly and appropriately to increase the chances of full recovery.


McCarron is part of a consortium that have been running free webinars since the beginning of April about COVID-19, to help health and social care staff respond to the pandemic. Partnering with the Trinity Centre for Ageing and Intellectual Disability (TCAID), are the All Ireland Institute of Hospice and Palliative Care, the Daughters of Charity Disability Support Service, St Francis Hospice Raheny, and Tallaght University Hospital. The webinars have attracted more than 5,000 online learners and, additionally, thousands of comments have been received from around the globe. Professor McCarron commented:


There is concern across the disability sector given the challenges associated with testing, physical distancing and resourcing. Underpinned by research from IDS-TILDA and listening to people with an intellectual disability, service providers and carers who have attended the webinars, a number of recommendations have emerged to address the health and well-being of people with ID during the pandemic.  


The recommendations are: 

  1. Make reasonable accommodations and prioritise COVID-19 testing and follow-up for people with an intellectual disability (ID)

Prolonged and /or unnecessarily long periods of social isolation while waiting for COVID-19 testing or test results will be particularly challenging for people with an ID and their caregivers.  They must receive priority testing and expedited follow-up with results. For many people with ID, having the COVID-19 test will be a difficult and unpleasant experience.  Testing must be accessible, and avoiding testing trauma will require staff who have the skills and competencies to both communicate and support people with ID.  Clinics doing the testing must be accessible with easy-read materials available and trained staff able to make reasonable accommodations for people with ID.  Expedited reporting of test results should be by health professionals experienced in communicating with people with ID and their carers.


  1. Enhance Risk Protection to minimize the number of people with ID exposed to the virus

Preparedness is key.  It is imperative that everyone adheres to the Health Protection Surveillance Centre and Health Service Executive guidelines and gets the basics right:  hand hygiene, social distancing, along with cough and sneeze etiquette.  Reducing risk for people with ID requires prevention and response measures. Staff caregivers will be the most likely, though unintended, carriers.  Staff must be supported to recognize their own symptoms and stay at home.  Staff temperatures must be monitored daily and appropriate and adequate personal protective equipment (PPE) must be available. We need to limit the movement of staff within group homes and across the organizations. Services must have identified isolation areas within homes or across the service so that individuals with suspected or confirmed symptoms can be transferred, if necessary, in a timely manner and cared for with dignity and respect. One staff or person with ID with symptoms equates to an outbreak and a full risk minimization process must be enacted.


  1. Assign Registered Intellectual Disability Nurses (RNIDs) to support social led services and acute hospitals

Many people with ID are not able to verbally report their symptoms. As well as the typical symptoms of fever and breathlessness, many people with ID may also present with atypical symptoms such as changes in appetite, diarrhea, and other gastrointestinal symptoms, as well as behavioral changes. Frontline staff and family caregivers need specific training on how to recognise, document and alert healthcare professionals of such symptoms as early as possible, and on how to sensitively, yet closely, monitor and aid individuals showing symptoms. Mobile disability hubs, tele-conferencing facilities linking to the acute hospitals and or palliative care services, and an ID-specific hotline are needed so that frontline staff can get support and advice if required from RNIDs and other relevant health care professionals. Hospitalisations that do occur will benefit from RNIDs being assigned to the acute hospital setting to assist with communication between clinicians and patients with ID.


  1. Ensure critical care services are not based on a Clinical Frailty Scale

With increasing pressure on health care systems, some countries are triaging patients for hospital and ICU admission based on clinical frailty measures. Given pre-existing conditions, many people with ID could meet frailty scale criteria.  For example, those with Down syndrome who have earlier onset of dementia may find themselves with frailty scores insufficient to meet criteria for COVID-19 critical care. Care decisions must be guided by the Health Service Executive’s Ethical Framework. Decisions to transfer to the acute setting must be multi-principled by considering the person’s premorbid health status, their will and preference (if known), the presence of multi-morbidity, overall health status and general frailty. No decision on the value of care should be based upon perceived frailty resulting from intellectual disability alone. To avoid crisis decision-making, it is also imperative that there are advanced care plans in place particularly for those most at risk, for example, older individuals with multiple morbidities.


  1. Facilitate the best care pathways

When people with ID have multiple health concerns, particularly with pre-existing cardiovascular disease, diabetes and respiratory problems, they are likely to have poorer outcomes from transfer to the acute hospital setting. People with ID who are older with high levels of health needs may benefit more from being cared for in a familiar environment by familiar staff.  We need to understand the benefits and burdens of our actions. Admission to the acute hospital is not the first line of defense; it is the last line of defense.  There are others when they become acutely sick with COVID-19 who may benefit from transfer to the acute hospital system and this care pathway must also be considered.  Recognizing that transfer to an acute hospital for some may be very traumatic experience, reasonable accommodations must be made to support the presence of a paid caregiver or a family member during this period.


  1. Make life for those in isolation and/or cocooning bearable

Isolation is likely to be a difficult time for many people with ID, and each person will experience it differently. Factors which influence how difficult are many: changes in established and usual routines, reduced choice with one’s day, loss of contact with familiar staff, missing family and friends, and fear of those wearing PPE. Strategies are needed to reduce fear and increase coping and tolerance for ‘safe relating’. We need to support staff in the development and implementation of innovative strategies and techniques, such as making one’s room/isolation area feel like ‘home from home’ with the use of familiar things, personal items, their chair, social stories, access to their favorite music ,TV programmes, easy read materials and a daily calendar to add structure to the day. Social connection with valued friends and family members may be possible using Skype, Zoom and other multimedia.  At all costs, we need to avoid the use of restrictive practices to support isolation and instead be proactive and prepared, adhering to national and international guidelines and The Convention on the Rights of Persons with Disabilities. Only in very exceptional circumstances, where the person is at risk to themselves or at risk to others, should more restrictive practices be considered, and their use should be guided and underpinned by the Ethical Framework for Decision-Making in a Pandemic, published by the Department of Health.


  1. Provide care for the carers

The circumstances surrounding illness, care, and death of a person with ID will have a prolonged and significant impact on family and staff caregivers.  The challenges require that carers are supported to be honest and open about what care can or cannot be provided in the current setting.  Collaboration between the acute hospital, palliative, hospice and disability sectors is essential.  There may be multiple bereavements of residents in the same home and profound grief amongst staff and peers.  The tremendous stress that carers will experience must be recognised and opportunities identified to provide respite, counselling and other resources.


With regard to care homes that test positive for a case or cases of COVID-19, Professor McCarron said:


We need to avoid the stigmatisation of these care homes and a blame culture which will add horrendous stress to staff who, for many, are already overwhelmed in trying to respond to the care needs of people in this pandemic.


Professor McCarron concluded;


Ultimately, it will not be about how many people test positive for COVID-19, but rather how they, and those who were in isolation with them, were cared for, and for those who unfortunately don’t survive, how they were supported through death and dying, and the impact that all of this had on family and staff caregivers.


COVID-I9 and ID Resources: https://www.tcd.ie/tcaid/about/covid19.php

Twitter: @ageingwithID

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Ciara O’Shea, Media Relations Officer | coshea9@tcd.ie | +353 1 896 4337