COVID-19 resources for health care providers and caregivers

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How to prepare for vaccination

• Getting Ready For My Shot: Accommodation request and preparation form. This tool includes a tip-sheet for caregivers of people with intellectual and developmental disabilities with strategies for how to prepare for vaccination. Prepare the accommodation request and vaccination preparation form together with the person you care for and bring it to the vaccination appointment.
• COVID-19 vaccines: Getting set to go. A webinar recording that includes many tips for caregivers on how to prepare and create a positive vaccination experience for people with intellectual and developmental disabilities.

Easy Read materials

• Things to know about the COVID-vaccine, Easy Read resource by H-CARDD, CAMH, Toronto.
• What happens when I get the vaccine, Easy Read resource by H-CARDD, CAMH, Toronto.
• Having a Vaccine for Coronavirus, by Books Beyond Words, UK. A wordless story designed to help people think about the coronavirus vaccine and what having the vaccine will mean. The pictures can help people to ask questions and talk through their feelings and concerns with a supporter so that they feel prepared when they receive their invitation.

Social stories

• COVID-19 vaccine: Ready, Set, Go!, Social story, by Surrey Place, Toronto
• Preparing to get the Covid-19 Vaccine: Some Strategies To Help If You Are Nervous About Needles, Social story by MacKenzie Health, Richmond Hill, Ontario
• What I need to know about COVID-19 and the COVID-19 vaccine, Social story by Aptus Treatment Centre, Toronto, ON
• Covid-19 vaccine social story, by Reena, Toronto
• Kory’s story about getting the vaccine, Easy Read resource, by H-CARDD, CAMH, Toronto

Other support strategies

• COVID-19 Vaccine Accessibility and reasonable adjustments for individuals with severe learning disabilities whose behaviour challenges, by The Challenging Behaviour Foundations, UK.
• Muscle relaxation routine. Practice this routine prior to going to the vaccination site.
• Left Arm Diagram and Right Arm Diagram, Surrey Place. Visual supports for keeping the arm in place during vaccination.
• Square Breathing, Geneva Centre. Practice this routine prior to going to the vaccination site.
• Celebrate getting the vaccine as an achievement with a certificate of completion. Use these templates to create your own vaccine diploma and record the date of the second vaccination
  • Certificate of completion 1
  • Certificate of completion 2

Videos

• Amanda gets a COVID19 Vaccine, Surrey Place, Toronto
• Getting Ready for your vaccine, Partners for planning, Toronto
• Krystal gets her COVID-19 vaccine, Azrieli Adult Neurodevelopmental Centre, CAMH, Toronto

• Easy Read accessible documents on COVID-19, consistent with Public Health Ontario guidance as well as the Ontario COVID-19 website. These information sheets have been adapted by H-CARDD with permission from Opening Doors UK. Available in English and French at H-CARDD COVID website are:
  • What is Coronavirus?
  • How to stay safe: Physical Distancing
  • How to stay safe: Handwashing
  • Stay in, Stay well
  • If you get sick
• Books Beyond Words, UK published a series of wordless stories around COVID-19 that help you facilitate a conversation with a person with IDD, including:
  • Beating the virus: A short wordless story, that will help people to understand what to do if you have Coronavirus and how to keep yourself and those who you care about safe. The story also shows how to safely help others who may be self-isolating. Supplementary text at the end of the story gives information on where people can seek help if they are unwell and signposts to other useful resources.

COVID advance care planning

• COVID-19 Advance Care Planning: A guide for caregivers of adults with intellectual and developmental disabilities, by the Primary Care Program, Surrey Place (in English and French). This tool guides caregivers of adults with intellectual and developmental disabilities (IDD) through the process of advance care planning regarding possible medical treatments for COVID-19. For adults with IDD, this process involves the adult’s substitute decision maker, a healthcare provider, and others who know the adult well, whom the adult trusts, and who are willing to support this process.
• Advance Care Planning for Adults with Developmental Disabilities During COVID-19, Surrey Place, information webinar for caregivers (webinar recording).
• Jack plans ahead for Coronavirus, by Beyond Words, UK. A wordless story and guide for family and caregivers. This is an illustrated resource on end-of-life care planning in the context of coronavirus for family and caregivers.

Accommodations and communication

• The COVID-19 Hospital Transfer Form, by the Primary Care Program, Surrey Place (in English and French). Designed for family and other caregivers of adults with intellectual and developmental disabilities. In the event of a hospital admission for COVID-19, this form communicates essential information to hospital staff, including medical information, substitute decision-maker contacts and information about support needs.
• Communication rights toolkit, by Communication Disabilities Access Canada. Patients with COVID-19 (coronavirus) who need communication tools and supports due to speech-related disabilities face greater risks of discrimination and isolation during this pandemic. This toolkit includes an accommodation request form that patients can bring to the hospital.

Social stories

• Social stories to facilitate a conversation about going to the hospital with COVID-19.
  • Going to the hospital with COVID-19 , by Surrey Place, Toronto, 2020
  • When I am in the hospital with COVID-19, by Surrey Place, Toronto, 2020

• Decision Making in Health Care of Adults with Intellectual and Developmental Disabilities: Promoting Capabilities, by the Primary Care Program, Surrey Place, Toronto. This tool provides practical steps to help healthcare providers meet their obligation to respect the decision-making rights of people with intellectual and developmental disabilities.
• The term Substitute Decision Maker (SDM) is used in Ontario law for the person who would make health and personal care decisions on a person’s behalf when they are unable to do so is. Speak Up Ontario provides information on the substitute decision maker hierarchy and how to identify an SDM in Ontario. Visit Speak Up Canada for similar information in other jurisdictions.
• For information on Power of Attorney, download the Power of Attorney Kit from the Ministry of the Attorney General, Ontario.
• Health Care Planning: Things to know about health care decisions, by H-CARDD, information webinar for caregivers (webinar recording).

• H-CARDD COVID, a website with resources and many tips about good mental health for adults with IDD during the pandemic https://www.hcarddcovid.com/info
• COVID-19 Self-help Booklet Series, CAMH, Toronto. The Self-help Booklet Series is for people with intellectual disabilities and can be used with the support of family members, friends, staff, and health care professionals. There is a how-to guide accompanying each booklet. The booklets are intended to give people with intellectual disabilities an opportunity to talk through their feelings and make plans for staying well at this difficult time.

• Down Syndrome Resource Foundation (DSRF): Preparing Your Loved One with Down Syndrome for a COVID-19 Test, by Down Syndrome resource Foundation, Canada
• Having a Test for Coronavirus, Books Beyond Words, UK. A wordless story about getting tested for coronavirus. The story shows how testing works at a drive through centre and using a self-test kit at home. This story can help support someone to understand what testing involves, to ask questions and to make informed decisions about what is right for them.
• COVID-19 Testing Social Story, Geneva Centre for Autism, Ontario

• Grief and loss during COVID-19, H-CARDD EHCO ONMH, Toronto (webinar recording)
• Palliative care for people with learning disabilities (PCPLD), UK (webinars and podcasts)
  • ‘Supporting people with learning disabilities in Bereavement‘, (webinar recording)
• When Someone Dies from Coronavirus, by Book Beyond Words, UK. A guide for family and caregivers. An illustrated resource on how to respond when somebody dies from coronavirus and coping with grief and bereavement.

• When it’s not safe to stay at home, by Beyond Words, UK. An illustrated guide to supporting people at risk of abuse at home during coronavirus. Includes information on recognizing domestic abuse and sources of support.
• In Ontario: ReportON is a telephone line and email address to report actual or suspected abuse or neglect of adults with intellectual or developmental disability.

Continue to promote healthcare visits for non-COVID care with a person’s family doctor. Share a video to explain virtual care:

Use patient engagement tools that facilitate the online healthcare visit:

• About My Health, Developmental Disabilities Primary Care Program, Surrey Place
• My Health Care Visit, Developmental Disabilities Primary Care Program, Surrey Place
  *These tools will soon be available as e-forms on the Ocean patient engagement platform by CognisantMD. Contact us for more information.

NEW! This tool is now available as an e-form, integrated with a patient’s electronic health record. Patients can fill in the form on their devices (e.g., laptop, iPad) before a health visit, and the information will be shared directly in a secure way with the doctor’s office. Ask if your doctor uses the Ocean communication platform and alert them to the electronic version of this form. Physicians can access the e-forms via Ocean, at CognisantMD. Patients and caregivers can also fill in the e-form online and print it to bring to the doctor’s visit. Access the forms here.