Q&A Section

Question1

"I have a VP shunt and I'm worried... If it breaks during COVID-19 would I be more likely to get a shunt infection?"

- Kevin, family member of a child or youth with a disability

Response from Dr. Adam Kirton (Pediatric neurologist at the Alberta Children's Hospital in Calgary):

"Thanks for your question Kevin. There is no increased risk. COVID is a viral infection that does not appear to infect the nervous system or devices like shunts directly. In contrast, shunt infections are caused by bacteria that usually come from inside the body.

Even if you had to go to hospital, infection risks there are lower than ever because people are in isolation and being extra cautious about infection prevention."

 

Question2

"I am worried about being able to help if I catch COVID19. I am worried that children with disabilities will not be helped if we start running out of ventilators. Will that happen in Canada?"

- Dora Lee, Teen/Youth

Response from Dr. Jennifer Zwicker (Director of Health Policy at the School of Public Policy, University of Calgary):

Thanks for this important #MyCOVIDDisabilityQ Dora Lee! In Canada youth with disability have a right to equal access to health care services. Ministers @CQualtro (Carla Qualtrough) and @PattyHajdu (Patty Hajdu) provided provincial and territorial ministers of health with this guidance: https://www.include-me.ca/covid-19/resource/letter-provincial-and-territorial-ministers-minister-qualtrough-and-minister-hajdu

 

Question3

"My child is 7 years old. He has autism and is in a first grade specialized class. Before COVID-19, he started to improve, and he was well taken care of with school and activities nearly every day (pool, taekwondo, entertainment centre). Now he is confined to a 4 1/2 apartment. Are there resources available to help with access to recreational material like a swing, ball or trampoline? In my child's case it could help a lot." 

- Guendouzi Nadjet, parent of a child or youth with a disability

Translation of response from Dr. Keiko Shikako-Thomas (Canada Research Chair in Childhood Disability, Participation and Knowledge Translation):

Having a routine is especially important. Dr. Keiko Shikako-Thomas suggests structuring your child’s time around their preferences. You know your child best! Do they prefer movement, quiet time, or perhaps music? Build a routine that has work, leisure, and relaxation components. Don’t forget to build in structured time for your child to communicate how they are feeling to you. Having a space where they are listened to and their needs are answered can be reassuring. If your child likes active play, use what you have at home before going out to buy expensive equipment! You can find ways to play with stairs, or by running around the building. Even jumping on the bed can be a DIY trampoline! Finally, take a look at the resources for inclusive leisure and mental health that Dr. Shikako-Thomas identified: https://twitter.com/KShikakothomas/status/1263142335292026885?s=20

 

Question4 olaf

“I'd like to receive information about places that could give us help on-line. My son is autistic and it'll be a really good help if we could get some therapy even on-line”

– Flavia, parent of a child with a disability

Response from Dr. Olaf Kraus de Camargo (Associate Professor in the Department of Pediatrics at McMaster University): 

Thank you for this question, Flavia. The answer depends where you live in Canada. In Ontario, your son needs to be registered to the #OAP (https://tinyurl.com/mycovidOAP). If you already have a service provider, contact this service provider. Many are offering virtual care and support that has been quite helpful to some of my patients. On the website https://tinyurl.com/mycovidASD you can also find free workshops that address common issues in Autism.


 

Judy question1

"What is the connection between Kawasaki disease and COVID? What symptoms should I be looking for in children?"

- Judy, family member speaking on behalf of a child or youth with a disability

Response from Dr. Francois Bolduc (Associate Professor in the Department of Pediatrics at University of Alberta):

What is the connection between Kawasaki disease and COVD-19?

This connection is an emerging issue. Individuals who tested positive for COVID-19 were noted to have a major inflammatory response similar to Kawasaki syndrome. We now refer to it as Multisystem inflammatory syndrome in children (MIS-C). This connection was reported in a 6 months-old infant and has now been seen in more individuals. A recent report from Italy in the journal Lancet also reveals an increase in the number of cases of Kawasaki syndrome since the COVID-19 pandemic.

What symptoms should we be looking for in children?

According to the Centre for Disease Control (CDC), Kawasaki syndrome is characterized by a combination of symptoms including fever, rash, enlarged lymph nodes, as well as other symptoms and can lead to acquired heart disease.

The American Heart Association (2017) also developed a set of criteria to recognize Kawasaki syndrome. In the more typical form, the symptoms include fever associated with 4 or more of the following:

  • redness of the eyes (conjunctivitis)
  • changes of the lips or mouth
  • neck lymph node enlargement
  • skin rash, redness of the palms and soles
  • firm swelling/thickening of the hands and feet

In addition to the symptoms listed above, it is crucial to look for abdominal and neck pain as well as vomiting and diarrhea as the gastrointestinal system can be involved.

There is also an incomplete form of the syndrome where patients can present partial symptoms. The criteria for this form include fever for 5 days or more, plus up to three of the criteria mentioned in the classic form.

For more information on the link between Kawasaki Disease and COVID-19, please see the CDC Summary on how to care for children with Multisystem inflammatory syndrome (MIS-C) during COVID-19 (scroll to the bottom of page).

 

Judy question2

"Do adults with intellectual disabilities and low immune system get the typical adult symptoms of COVID or the pandemic version? Want to know what to look for in my 26 year old who functions like a 2-year-old."

- Judy, family member speaking on behalf of a child or youth with a disability

Response from Dr. Francois Bolduc (Associate Professor in the Department of Pediatrics at University of Alberta):

Everyone’s immunological response to COVID-19 may be different. The advice is similar to what is recommended to the general population for most individuals to prevent risks.

Also, here are a few useful links I found that might be useful about children, young adults and COVID19:

 

Joan

"Is there any way that we can safely support persons with disabilities and their families better? Maybe more home visiting programs? Then the vulnerable persons with disabilities are not being asked to travel places to access services. And consultants can do more consultation to parents, support workers at home."

- Joan, family member speaking on behalf of a child or youth with a disability

Response from Dr. Michelle Phoenix (Assistant Professor in the School of Rehabilitation Science at McMaster University):

Some ideas for accessible and safe supports for people with disabilities:

  1. Use phone or video consults when possible. Availability may vary by service and agency, call your providers or check social feeds + website to know what you can access remotely.
  2. If in home supports are needed (e.g., nursing, PSW) ask about the number of clients your provider is seeing (1 would be ideal). Check and advocate for proper use of PPE. If you are responsible for securing PPE and access is difficult be vocal, this needs to be addressed.
  3. If hospital care is needed check "visitor" polices. Policies may differ by province and hospital. Caregivers are partners in care that can increase care quality, communication and safety. A campaign exists to increase caregiver access here: https://t.co/Es1fVX9MHL?amp=1

I hope families know they are not alone. Researchers, families, policy makers, service organizations need to collaborate to improve access to safe care. Thanks for raising the question. My detailed thoughts are here: https://www.cbc.ca/news/canada/hamilton/children-disabilities-coronavirus-1.5571099

 

Tammy

"Why did people on OSD only receive 100? Many of us have had to send people out to get our stuff now. And have to pay some people! Many had to go may times since stock is not available. We need to get ahead a bit on stuff and do not have the money to do so. We are also the most vulnerable amongst society living at the poverty level or below. So frustrating! No one ever seems to go bat for us in any political party." - Tammy, family memeber speaking on behalf of a child or youth with a disability.

Response from Nancy Lockwood (Program Manager at Citizen Advocacy Ottawa):

We have seen this question raised by various groups in Ontario with a disability focus. We agree that now, more than ever, we need to ensure that people with visible and invisible disabilities are receiving the supports they need. We are witnessing this firsthand among the people we support at our agency, Citizen Advocacy Ottawa. Like so many other agencies, we are developing new, creative ways to connect with the people we support during social isolation. These methods have included virtual support groups / social gatherings, caregiver groups, webinars and direct outreach via teleconference, phone and email. We are even holding virtual dances with a DJ to reduce social isolation!

Our governments are supporting people with disabilities in a variety of ways, in addition to direct funding. Many initiatives launched during COVID-19 are run by agencies that receive government funding (federal, provincial and municipal), demonstrating another way of impacting the lives of people with disabilities. For example, our agency's Fetal Alcohol Resource Program supports people with Fetal Alcohol Spectrum Disorder through a combination of funding from Kids Brain Health Network, CHEO Hospital via funds provided by Ontario's Ministry of Children, Community and Social Service, and the Children's Aid Society of Ottawa. This program supports hundreds of clients and has trained thousands of front line workers thanks to these funding partners. 

Concerning the Ontario Disability Supports Program (ODSP), the Ontario government initially announced a one-time benefit of $100 per individual or $200 per family for those receiving monthly ODSP payments. This plan has been revised,  likely due to public feedback, to a monthly addition to ODSP benefit until July 2020. Please see: https://www.mcss.gov.on.ca/en/mcss/programs/social/odsp/odsp-covid-fact-sheets.aspx 

Also, some individuals receiving ODSP will qualify for the Canada Emergency Relief Benefit (CERB). CERB funds will be treated as employment income. There is more information at the link provided above. People with developmental disabilities who qualify for Passport funding in Ontario may be eligible to claim additional expenses during Covid-19 https://www.mcss.gov.on.ca/en/mcss/programs/developmental/servicesupport/passport.aspx.

 

Krisquestion

"Why would a child with neurological disability  be considered higher risk? I have read papers from a number of reputable orgs that state this is the case, however, neurological disabilities have a very broad spectrum (autism through extreme medical fragility). Now that "they've" lumped them together and issued this blanket caution, I would like more specific physiological reasons for the concern. I'm anxious after reading these papers/articles... am I worrying unnecessarily?"

- Kris, family member speaking on behalf of a daughter with a brain injury.

Response from Dr. Keiko Shikako-Thomas (Canada Research Chair in Childhood Disability, Participation and Knowledge Translation):

Hi Kris! CHILD-BRIGHT Network has supported a quick look at the current research to answer your exact question. What we found, unfortunately, is that children with brain-based disabilities are not represented in the research on COVID to date. What it means is that we don't really know if we haven't asked children with COVID if they also have a disability, or if this information has not been reported in current public health initiatives. We can't tell, from the current research, if this group is at higher risk. General guidelines alert for possible higher risks due to frequent co-morbidities that children with disabilities may have, which may put them at risk of using the healthcare system more often, or needing hospital visits for other reasons associated to their disability. We will look at the research evidence again in a few months and see if there is more info. In the meantime we're also pledging for better data collection on this population. You can see the full review here https://www.child-bright.ca/new-blog/2020/5/15/covid-rapid-review and stay tuned to a survey coming out soon!

Response from Dr. Olaf Kraus de Camargo (Associate Professor in the Department of Pediatrics at McMaster University): 

Hi Kris, this is a topic discussed quite intensely. Two aspects need to be considered for children with neurodevelopmental issues: 1 - their breathing (ex: do they struggle usually to cough?, do they gag easily? Can they move themselves to facilitate coughing?) 2- some children with neurodevelopmental issues also present with some immunedeficiencies, which would also put them at a higher risk.

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