DSRF's intrepid reporter brings both information and comedy in the latest edition of DSRF News with Andrew Bingham. Here's what's up in the month ahead at the Down Syndrome Resource Foundation.
Longtime DSRF supporter the Edith Lando Charitable Foundation has donated $4,000 to our educational programs for children and youth with Down syndrome. The Foundation is dedicated to building the self-esteem of young people, and they are certainly growing the confidence of DSRF’s students. Thank you!
Spring has sprung and COVID-19 vaccines are now available for BC adults with Down syndrome! Andrew brings you up to speed on all this and much more in the April edition of DSRF News with Andrew Bingham.
UPDATE: March 26, 2021 - COVID-19 Vaccination Prioritization for People with Down Syndrome Ages 16-18 in British Columbia
We have received clarification regarding COVID-19 vaccines for individuals with Down syndrome ages 16-18, who seemingly fell through the cracks in the BC guidelines released on March 23 (see below).
"Clinically Extremely Vulnerable" (CEV) letters will now be sent not only to those who are currently receiving CLBC support (ages 19+), but also to those who are currently 18 and have already received approval for CLBC services once they turn 19. Please click here to read an announcement from our partners at CLBC for full details.
For those with Down syndrome in the 16-17 age range (or 18-year-olds who aren't yet approved by CLBC), we recommend seeking a doctor's order for immediate vaccination. This is consistent with the government's previously published guidelines suggesting that if you are not on the CEV list but believe you should be, to go to your personal physician for assistance. We have been told that if a doctor orders a vaccine for a person 16-18 with Down syndrome, they will be able to book an appointment.
UPDATE: March 23, 2021 - COVID-19 Prioritization for Adults with Down Syndrome in British Columbia
Today, the Province of BC provided clarification on who is included in the “clinically extremely vulnerable” category of the Phase 3 COVID-19 vaccination group, and specifically who qualifies as having “significant developmental disabilities that increase risk.” They also announced when and how this group can begin booking vaccine appointments. Here is what we know, along with our interpretation and a few questions for which we are trying to find answers.
“You have a significant developmental disability, such as adults with Down syndrome and other conditions, that is significant enough that you require support for activities of daily living and you use or receive support from: Community Supports for Independent Living (CSIL), Community Living British Columbia (CLBC), or Nursing Support Services program for youth aged 16 to 19.”
DSRF Interpretation: Based on the above, all adults with Down syndrome who are 19+ AND are registered with CLBC or CSIL are eligible. We are seeking clarification on whether adults with Down syndrome aged 19+ who do not receive support from CLBC or CSIL are eligible, and also on whether youth with Down syndrome aged 16-18 who do not receive Nursing Support Services are eligible. We will post this information as soon as we have it.
DATES AND PROCESS:
If you're on the clinically extremely vulnerable (CEV) list, you will receive a patient invitation letter. The letter will be mailed to your home address on file with your Personal Health Number. Letters will be mailed starting March 24 and should arrive by April 15. People who are part of the CEV list are likely to have received or continue to receive care from special clinics or programs; have had indicative medications prescribed; have used hospital services; or have had other interactions with similar programs and services that have all enabled the government to identify individuals who are CEV by the data available.
ONCE YOU HAVE RECEIVED YOUR LETTER: Starting March 29, you can call your health authority to book a vaccine appointment (the phone number will be listed in your letter). Before you call, we recommend you review information from the BC Centre for Disease Control on the planning, timing and safety of the vaccine with consideration of your health condition.
When booking your appointment, you'll be asked to provide:
First and last name
Date of birth
Confirmation you have received the patient invitation letter
Contact information (email you check regularly or phone number that can receive text messages)
Personal Health Number (found on the back of your B.C. driver's licence, BC Services Card or CareCard)
IF YOU DON’T RECEIVE YOUR LETTER: If you're on the clinically extremely vulnerable list and you haven't received your patient invitation letter by April 15, it may be because:
You recently moved to B.C.
You had a treatment in another province
You don't get medication through the BC PharmaNet system
Your home address on file is outdated
Starting April 15, you can try booking an appointment using the online Get Vaccinated registration and booking tool or call centre. Using your Personal Health Number, the registration system or phone agent will confirm if you're eligible.
If the registration system doesn't confirm your eligibility and you believe you should be included on the clinically extremely vulnerable list, you can contact the provincial call centre or visit the provincial online registration and booking system, scheduled to launch on April 6, to confirm if you are on the CEV list. If you are not on the CEV list, you can reach out to your physician or nurse practitioner about your eligibility. There is still opportunity for people to get on the list if you fulfill the definitions of one of the CEV conditions (through review with your physician).
WHAT TO EXPECT AT THE VACCINE CLINIC:
You must bring your patient invitation letter and your Personal Health Number to your appointment.
Get ready for your appointment:
Wear a short-sleeved shirt and a mask
Arrive a few minutes before your scheduled appointment time
You can bring one person with you for support.
All clinics are wheelchair accessible. You will be provided a mask if you need one.
At the clinic you will:
Complete a check-in process
Get either the Pfizer or Moderna vaccine dose. A choice will not be offered.
Wait in an observation area for about 15 minutes
You can expect to be at the clinic for 30 to 60 minutes in total
Stay tuned to @DSRFCanada on all major social media platforms for further information as we receive it.
January 14, 2021
In light of scientific evidence that individuals with Down syndrome are at four times higher risk of hospitalization and ten times higher risk of death from COVID-19 than the typical population, the Down Syndrome Resource Foundation has appealed to the Government of the Province of British Columbia to recognize people with Down syndrome as an increased risk group, and to prioritize them in COVID-19 vaccine distribution.
Specifically, DSRF strongly recommends that adults with Down syndrome over the age of 40 be considered high priority for vaccination, and we believe this is consistent with the province's strategy of reducing deaths first.
In addition, for both physical and mental health reasons, DSRF recommends that individuals with Down syndrome between the ages of 16 and 39 be given priority consideration. Those in this age group are also known to have associated immune dysfunction, congenital heart disease, and pulmonary pathology. Additionally, developmental disabilities are a common characteristic of Down syndrome, which makes this population especially at risk of pandemic-related mental health problems.
Click here to read DSRF's full letter to the Province of BC
DSRF CEO Wayne Leslie appeared on CBC News Network on January 16, 2021 to discuss this important issue. Here's the segment: