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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.

Concerns about care and COVID-19 risks

People with disabilities may experience , however this group was about . They may also experience negative outcomes due to . 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, . We must recognize that .

Worldwide alarm was raised about the discriminatory nature of guidelines that may if hospitals become overwhelmed. 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 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, to promote the . Consultation in policy and guideline development should include people with disabilities and disability organizations to guard against ableist beliefs.

Ä¢¹½´«Ã½-based family concerns

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 , , cancellation of respite and group programs and the .

Even if PSWs or home nurses are available, families may suspend the service to . The lack of supports and resources, paired with extra care responsibilities during COVID-19, may compound the .

With school closures, demands. This may be particularly hard for parents of children with disabilities because learning and school participation are often supported by a team of . Some of these supports have been discontinued, while others have been moved online.

Some children with disabilities will if there are inadequate accommodations while for others, online learning is simply not an option. Families of children with disabilities are also , including less access to the .

We must consider the accessibility of remote learning and , as well as the stress placed on families of children with disabilities when remote and in-home supports and resources are not available.

Group living environments

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. , where people with disabilities living in supportive housing have nearly all contracted COVID-19 and six people had died as of April 28, 2020.

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 .

This disproportionately affects people with disabilities, given that in 2016 over . 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 concerns

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 , which may be exacerbated during the pandemic. The well-being of children with intellectual or language disabilities and the need for precautions such as staying indoors.

(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.

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 , with children who have disabilities already experiencing . If mental illness is , specific attention needs to be paid to the mental health of children with disabilities who may be in need of protection.

What should I do?

Raise concerns about children with disabilities and their families and advocate for:

1. Inclusion of people with disabilities in policy development.

2. Ensuring human and equipment resources are available for home and centre-based care.

3. Accessible information.

4. Promotion of social inclusion to advance mental health and child safety.