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By Michelle Phoenix, Assistant Professor School of Rehabilitation Science, CanChild Scientist, McMaster University
COVID-19 has been disruptive to all families, but the effects of school closures, medical equipment shortages and social distancing are further amplified for families of children with disabilities.
As an assistant professor in the School of Rehabilitation Science at McMaster University, a CanChild Scientist and adjunct scientist at Bloorview Research Institute, I study children’s rehabilitation services including family-centred care, ethics, access and equity. I’m concerned about the challenges that children with disabilities and their families face during COVID-19, and can offer some ideas for taking prompt action and promoting allyship.
People with disabilities may experience serious complications or death due to COVID-19, however this group was missed in messaging about at-risk populations. They may also experience negative outcomes due to reduced quality of care. Public screening facilities may be inaccessible or increase exposure for children and families.
Parents who have COVID-19 may lack the specialized child-care supports needed to isolate from their child. If a child contracts COVID-19 or otherwise requires hospitalization, parents and personal support workers (PSW) may be denied hospital entry. We must recognize that caregivers provide communication and care support, improving care and protecting patients.
Worldwide alarm was raised about the discriminatory nature of guidelines that may limit acute care and resources for people with disabilities who have COVID-19 if hospitals become overwhelmed. People who use ventilators are worried and may avoid health care for fear that their ventilators may be given to someone else during an equipment shortage. Some people with disabilities in the United Kingdom were sent do not resuscitate (DNR) forms during the pandemic. Learning and developmental disabilities have been given as reasons for some DNR orders.
These practices are unethical and devalue the lives of people with disabilities. In Canada, disability organizations have made recommendations to promote the rights of people with disabilities. Consultation in policy and guideline development should include people with disabilities and disability organizations to guard against ableist beliefs.
Many children with disabilities require medication, personal protective equipment (PPE, such as gloves and masks), home care, respite and rehabilitation services. These resources are scarce or unavailable given PPE shortages in communities, delayed or cancelled dispensing of medical equipment, cancellation of respite and group programs and the potential for staffing shortages.
Even if PSWs or home nurses are available, families may suspend the service to limit exposure to COVID-19 when staff are providing service in multiple homes. The lack of supports and resources, paired with extra care responsibilities during COVID-19, may compound the physical and mental health challenges already experienced by many parents of children with disabilities.
With school closures, parents are struggling to manage children’s education while balancing childcare and work demands. This may be particularly hard for parents of children with disabilities because learning and school participation are often supported by a team of professionals such as educational assistants and speech-language pathologists, and by specialized technology. Some of these supports have been discontinued, while others have been moved online.
Some children with disabilities will face greater challenges with online learning if there are inadequate accommodations while for others, online learning is simply not an option. Families of children with disabilities are also more likely to experience socio-economic disadvantage, including less access to the internet and technology.
We must consider the accessibility of remote learning and rehabilitation services, such as speech therapy, as well as the stress placed on families of children with disabilities when remote and in-home supports and resources are not available.
People with disabilities of all ages who are cared for in group environments, such as facilities specifically for people with disabilities or long-term care (LTC) homes, face heightened risks for contracting COVID-19. Participation House, in Markham, Ont., is a devastating case, where people with disabilities living in supportive housing have nearly all contracted COVID-19 and six people had died as of April 28, 2020.
Staffing shortages and their tremendous impact on residents and their families is alarming. The spread and death rate of COVID-19 in Canada’s LTC homes is dire, accounting for over 80 per cent the COVID-19 related deaths in Canada.
This disproportionately affects people with disabilities, given that in 2016 over 2,900 people with disabilities lived in LTC homes, more than half of whom were under 65 years old. This pandemic has highlighted the gaping cracks in the care and living supports for people with disabilities and their families that must be attended to now and after this crisis has passed.
Mental health challenges such as loneliness, depression and anxiety are some of the anticipated consequences of COVID-19. Specific attention should be paid to the mental health needs of children with disabilities. Children with neuromotor disabilities such as cerebral palsy are more likely than others to have mental health symptoms, which may be exacerbated during the pandemic. The well-being of children with intellectual or language disabilities may be negatively affected due to difficulties understanding the pandemic and the need for precautions such as staying indoors.
COVID-19 information has not consistently been shared in accessible formats (such as closed captioning and sign language interpretation), further marginalizing people with disabilities and increasing their health risks. The mental health of children with disabilities may be improved if information is made accessible to promote understanding and coping. For example, closed captioned videos explaining concepts such as social distancing.
Strategies used by children with disabilities to promote mental health may not currently be available, such as routines and social supports in schools and recreations programs. Children and families living with disability are often more socially isolated than others. Therefore, it can be difficult to create opportunities to interact with others, especially those that rely on language (for example, video chats).
Another threat during social isolation is increased risk for abuse, with children who have disabilities already experiencing higher rates of abuse and neglect than other children. If mental illness is the next wave of the pandemic, specific attention needs to be paid to the mental health of children with disabilities who may be in need of protection.
Raise concerns about children with disabilities and their families and advocate for:
Inclusion of people with disabilities in policy development.
Ensuring human and equipment resources are available for home and centre-based care.
Promotion of social inclusion to advance mental health and child safety.
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