Coronavirus (COVID-19): Resources for the Autism Community

At ACT we are aware that the current health environment is deeply worrying for many families in our community, as well as autistic adults, and the professionals who support them. ACT is gathering information on this page to support families during the COVID-19 crisis, including resources specific to those who are neuro-diverse and useful general resources. As more become available, they will be shared via this page and on ACT’s Facebook page. We welcome your submissions to info@actcommunity.ca.

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Advocating for B.C. Families

ACT is gathering information from all relevant government ministries to keep you posted on any resources that are being made available to support families and/or adults affected by neuro-developmental conditions during the COVID-19 crisis. It is promising that B.C.’s Finance Minister, Carol James, has committed $1.7 Billion “devoted to fund critical services, including health care, housing and helping families and people with disabilities”, according to the May 24th edition of the Times Colonist Newspaper. However, B.C. families supporting individuals with disabilities are still waiting to understand what this means in terms of their increasingly fragile situations, as no government ministry has addressed their needs with specific information on their website.

ACT has provided relevant ministries with specific practical recommendations. We are monitoring the responses, or lack thereof, from government, including the Ministry of Children and Family Development and Ministry of Social Development and CLBC. We are also publishing the insightful community feedback ACT is receiving from families.

View the most recent updates and see ACT’s Tips on Advocacy
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Response from MCFD

The Ministry of Children and Family Development (MCFD) has yet to recognized the concerns of families of children with special needs on its website although thousands of families across B.C. depend on MCFD’s specialized services or funding. Many of these are single-parent families, very low-income and have no access to childcare workers, respite providers or therapists because of the need to obey social distancing requirements. Many special needs children have been removed from their daycares because they are vulnerable to infection. Families also fear that they will lose direct funding for their children for respite or autism funding if they can’t use it within the timeframe allotted. ACT is receiving many comments from families about their need for flexible support from MCFD and the absence of information. We are encouraging MCFD to communicate with families and will keep the community updated when we hear any details, on this page.

Response from Ministry of Education

The response from the B.C. Ministry of Education (MOE) to COVID-19 has been rolled out with the ending of Spring Break. Many families will be relieved that MOE’s website, unlike the Ministry of Children and Family Development’s site, recognizes that students with special needs are particularly vulnerable. However, it is unclear what steps individual school districts, schools and teachers will take to support children with special health and educational needs.

The B.C. Minister of Education and President of the BC Confederation of Parent Advisory Councils sent a letter via school districts (pdf) on March 27th, with specific information for families.

A special website ‘Keep on Learning’ was launched by MOE on March 27th with many excellent resources.

MOE has prepared a Frequently Asked Questions (pdf) SECTION 3 – Support for Children with Disabilities and Diverse (Special) Need, pages 5 & 6, address the concerns of families but there is little detail as yet. MOE has promised to keep this page updated as new information becomes available.

Response from MSDPR & Community Living BC

The Ministry for Social Development and Poverty Reduction (MSDRP) is responsible for providing a wide-range of services and funding for adults with disabilities, including those who are living independently – often in poverty.

As of March 26, when MSDRP Minister Shawn Simpson participated in a Community Living BC teleconference, positive information is being made available which gives hope that the specific and increased financial needs of adults with disabilities will be addressed during this current crisis

ACT’s notes from the CLBC Press Conference are being shared to fill the information gap, please keep in mind that this is not an official transcript and should not be depended on. Inclusion BC has published their synopsis at Q & A with CLBC

Response from Community Living British Columbia

Community Living BC (CLBC) is a Crown Corporation funded by MSDPR, largely for those who also have intellectual disabilities. It is providing a higher standard of communication and has updated information on its website


Advocacy Tips from ACT

ACT is receiving many concerned messages from families and professionals following the publication of our recommendations to the Ministry of Children and Family Development and the Ministry of Social Development. We are being asked for advice on how to advocate on a system-wide basis so that all citizens with special needs receive the support they need. More able members of our community are concerned that we are unlikely to hear from vulnerable families and adults living independently who are not able to advocate for themselves but are most at risk.

There are many ways to advocate constructively, which is our right and our duty as citizens of a democracy:

  • Concerned individuals can write Katrine Conroy, the Minister for the MCFD and voice concerns. Her email address is: MCF.Minister@gov.bc.ca. For those whose children are adults, they can write Shane Simpson, the Minister for Social Development and Poverty Reduction SDPR.Minister@gov.bc.ca Explain how the COVID-19 crisis is affecting you and your family and why increased funding and more flexibility in spending specialized funding like At-Home Respite and Autism Funding would help you keep yourself and your children safe during this crisis.
  • If advocates copy their emails to ACT at info@actcommunity.ca, we will compile them as part of a report we are doing on parental concerns at the lack of responsiveness from MCFD [as of March 26th, MSDPR is beginning to communicating via Community Living BC]. We will not make identifying information public.
  • A complimentary advocacy route is for family members, concerned professionals and self-advocates to contact their MLA’s, by email or telephone and express their concerns for themselves and other members of the special needs/ neuro-diverse community. Here is how to find your MLA:  www.leg.bc.ca/learn-about-us/members. Again, ACT would appreciate being copied on emails.
  • If you would prefer not to identify yourself directly to government, you can send your emails to ACT at info@actcommunity.ca and we will add them to the report we are doing. We will protect privacy.
  • Parents can also post their concerns on ACT’s Facebook page. www.facebook.com/AutismCommunityTraining
  • ACT will be continually updating our COVID-19 page which has links to the webpages for relevant ministries. Check on the latest information before writing your letters.
  • Join ACT’s confidential email list so that we can reach you with new information.
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Free ACT web stream: Autism, Anxiety and COVID-19

April 2nd, 3pm Pacific Time

To mark World Autism Day with a practical initiative, ACT has invited three respected mental health clinicians, who have presented for ACT on autism and mental health, to answer questions on ‘Anxiety and COVID-19’.

Visit the event details page for live streaming information and how you can submit your questions

Practical Advice for the Autism Community from Dr. Anthony Bailey

Dr Anthony Bailey, Professor and Chair of Child and Adolescent Psychiatry at the University of British Columbia is well known to the autism community. Dr. Bailey has kindly written an article for us that is helpful as we all struggle to support our families in this time of uncertainty.

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Worldwide, families are experiencing a sudden change in their life situation. Nearly a billion children are out of school. Recreation centres, restaurants and cafés are shutting their doors, many workers are being sent home or laid off, and in some countries the entire population is being asked to stay at home. There are numerous reliable sources of information about COVID-19 in the mainstream media and on government websites; the purpose of this brief piece is simply to draw attention to some issues that might crop up in families affected by ASD.

One of the clearest relevant fact sheets about the virus is written by a colleague https://cpa.ca/covid-19/, who draws attention to how anxiety and fearful reactions are contagious and can be counterproductive in managing the current situation. Helping individuals with ASD get through this disruption in part relies on our own ability to stay calm and to model sensible behaviours; indeed, as at other times, strategies that are helpful for people with ASD are often beneficial for us all.

The closure of public and private places to decrease the risk of viral transmission is disrupting many family routines, which by itself is stressful, often particularly so for individuals with ASD. Consequently, it is helpful to almost everyone to keep to as many old routines as possible and to substitute new ones if necessary. Sticking to the usual sleeping and waking times, and planning to vary meal times as little as possible, keeps the normal reference points of our day. Getting dressed, even if we are not expecting to leave the house, also keeps us in touch with our usual behaviours.

With regard to youngsters who may be out of school for quite some time, we don’t know yet just how much use the different school boards will make of remote learning, but this may be slow to kick in, or only keep children occupied for a limited number of hours. So, it may be necessary to arrange some types of home-based structured activities in order to minimize the possibility of more time spent on repetitive behaviours or obsessional interests.

When both parents are at work, or in working single-parent households, it may be possible to ask for help from local older teenagers who are out of school, or indeed from adults who have been sent home from their own jobs. Of course, this could be the moment to encourage children and youth to play their part by helping with every day household tasks and acknowledging their contribution. For some individuals it might be appropriate to help older people in the community who are staying at home, perhaps by running errands, walking dogs, doing yard work etc. These strategies may not be relevant for some less able individuals, and although individual therapists may have to cease their contact with child and youth clients, their expert knowledge about the individual can still be tapped for suggestions for appealing activities.

Many people are anxious about contracting the virus. Additionally, the pandemic is figuring so prominently in the media that it is very hard to resist the temptation to update ourselves far too often. If this is a problematic behavior for someone with ASD, then a helpful strategy can be to suggest checking on the news just once or twice a day; but if that fails limiting access to electronic media may be helpful, although possibly liable to cause some friction! There is also the potential for repetitive questioning about the pandemic, or an overdeveloped sense of risk or vulnerability, particularly in individuals who already worry about their health or have OCD. As with other types of repetitive questioning, it can be helpful to allocate a limited time at a fixed point in the day (after the evening meal often works well) when questions can be asked and answered.

Many individuals with ASD prefer certainty, whereas at this stage of the pandemic so much is uncertain. Providing false reassurance nearly always backfires, and it is generally more helpful in the long run to say when some things are unknown, such as when life will get back to normal. We can, however, be clear about some things. COVID-19 is unlike the worst pandemic of modern times -the Spanish Flu of 1918. That influenza outbreak was particularly virulent in young adults, whereas the vast majority of younger people who contract COVID-19 will have a relatively mild illness. The reason that governments worldwide are taking such far-reaching precautionary measures is to protect the elderly and people with serious medical conditions, who appear to be particularly vulnerable to developing a severe illness. That is why visits to or by grandparents are being discouraged, but we can still stay in touch by phone or other media. For younger, or less verbally able individuals, Social Stories can be an effective way of explaining why something invisible has had such a big impact on our lives.

This morning when I asked a family member who is also a lawyer, what areas of legal work she thought were likely to increase because of the pandemic, she immediately replied Divorce! We are not use to being cooped up with our families for so long and sometimes our nerves can start to fray. That makes it particularly important to create some personal space for each family member, but also to make sure (whilst we are still allowed) that we all leave the house for a reasonably long period of time each day. Exercise is an effective stress reducer and we can still take it whilst maintaining a reasonable physical distance from other people.

We are fortunate to be living in a highly developed country with a good health system. For the overwhelming majority of us the stories we will tell about this period in the years to come will be about our individual privations and our ingenuity, rather than the effects upon our physical health. We need to keep upbeat and take good care of ourselves if we are going to help individuals with ASD get through the pandemic without too much stress.

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Anxiety, Autism and COVID-19 Resources

During this time, many of us are experiencing increased anxiety levels. This can be especially difficult for individuals who have social-communication challenges. Anxiety is a particular problem for autistic individuals across the age range but is often unrecognized. The resources gathered below may be of help.

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Determining if your child’s symptoms are autism or anxiety-related can be challenging. Review the below resources for guidance.

ACT’s Mental Health and Autism Project, at Autism Videos @ ACT, is free and accessible without a password. For all of ACT’s resources on mental health, see our Guide to Mental Health Resources.

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Resources for Families with Younger Children

Includes advice for talking to children about COVID-19, social stories, visual aids, tips for coping with isolation, and ideas for engaging children at home.

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Coronavirus Specific Resources:
Ideas for Engaging Children:
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Resources for Youths & Adults with Autism

Learning about the COVID-19, preventing the spread, coping with isolation, managing routines and insights published by autistic adults.

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Stay Informed

The latest news from local and international public health agencies.

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Public Health Agency of Canada Coronavirus disease (COVID-19): Outbreak page.

Residents of British Columbia can find updates from the BC Centre for Disease Control on their COVID-19 page. Download the COVID-19 BC Support App and Self-Assessment Tool to receive the latest updates, trusted resources, and alerts. The Self-Assessment Tool is built in.

Visit the World Health Organization’s information for the public, including COVID-19 myth-busters.

BC Centre for Disease Control COVID-19 FAQ Guides:

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COVID-19 Resources in Additional Languages

Spanish and French language resources currently available. Chinese and Punjabi resources coming soon!

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Español

Recursos de salud mental

Recursos para familias con niños pequeños

Recursos de información relacionados con el coronavirus:
Ideas para involucrar a los niños:

Recursos para jóvenes y adultos diagnosticados con Autismo:


Français

Ressources en santé mentale:

Ressources pour les familles ayant de jeunes enfants

Ressources spécifiques aux coronavirus:
Idées pour engager les enfants:

Ressources pour les jeunes et les adultes diagnostiqués avec l’autisme:

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Best Practices for COVID-19

  • Prevention: Wash your hands, cover your mouth and nose when coughing or sneezing, and stay home when you’re sick.
  • Symptoms: Reported signs and symptoms include: fever, coughing, and/or difficulty breathing. If you think you are experiencing symptoms of COVID-19 you can try this quick, online self-assessment tool.
  • Experiencing symptoms: If you think you have symptoms of COVID-19 (for example fever, coughing, and/or difficulty breathing), please stay home, and self-isolate for 10 days after the initial start of your symptoms. After 10 days, if your temperature is normal and you feel well, you may return to your routine activities. Coughing may persist for several weeks, so a cough alone does not mean you need to continue to self-isolate beyond 10 days. Please seek medical care if respiratory symptoms worsen.
  • Travelling outside of Canada: An official global travel advisory is in effect. Avoid non-essential travel outside Canada until further notice. Visit the Government of Canada’s website for the latest travel advisory updates.
  • Health questions: If you have health concerns, call HealthLink BC at 8-1-1. Please be patient as they are experiencing high call volumes. For non medical information about COVID-19 Call 1-888-COVID19 (1-888-268-4319) or text 604-630-0300 from 7:30 am to 8 pm.

Source: Vancouver Coastal Health

An Update on ACT’s Live Events

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ACT has suspended two events scheduled for April 2020, as it is unlikely that Simon Fraser University will be available. Our May 22, 2020 event is still open for registrations but will be available via web streaming only. We will keep all registrants updated as that date draws closer. In-person attendance will resume when the provincial government allows. For information on ACT’s web streaming program, visit ACT Live Web Streaming.

ACT is planning to offer a number of free web streamed events in the coming weeks – we will be sending out updates as the information becomes available. Don’t forget that Autism Videos @ ACT has 60 workshops and events, all free, with no password required!

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Special Needs Organizations responding to COVID-19

ACT has created this listing of organizations that are actively advocating for provincial and federal governments to meet the needs of Canadians with disabilities.

In British Columbia:

BCEdAccess

Inclusion BC

Family Support Institute

Across Canada:

ARCH Disability Law Centre

Is your Canadian organization advocating for a stronger response to those with disabilities? Let us know at info@actcommunity.ca