VISIONS – December 2021

VISIONS December cover featuring cups of hot chocolate.

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VISIONS

Canadian Council of the Blind Newsletter

December 2021

“A lack of sight is

not a lack of vision”

From the President’s Desk

It is hard to believe, but as we continue to move forward we have now turned the calendar to December, and it is gratifying to see many of our Chapters planning their Christmas returns to getting together in person. While we take time to celebrate, we must also take time to reflect on the hardships faced by many of our members and families in British Columbia and Nova Scotia, who have faced terrible flooding recently. While still maintaining a cautious approach to the pandemic. The CCB family certainly sends our thoughts and prayers to those affected by this destructive anomaly. 

It is very compelling to see the results of the wonderful collaboration that produced the Cost of Vision Loss and Blindness in Canada report, and its subsequent addendum on the impact of COVID-19 on eye health. Our community has strong evidence why the Government of Canada should fulfill its promised National Vision Health Plan. The crisis of preventable blindness impacting over 8 million Canadians needs to be addressed to improve the lives of the 1.2 million Canadians living with uncorrectable vision loss who need better care and services.

It is through strong partnerships with all involved like our partners at Fighting Blindness Canada (FBC), and through strong leadership from their President and CEO, Doug Earle, and team, that we can achieve these goals as a community together.

This was illustrated by CCB working with FBC and others in the community to encourage the provincial governments to provide public access to Luxturna. This is the first Health Canada approved gene therapy, which restores sight for people by replacing the malfunctioning RPE65 gene and creating the precedent for public funding of future innovative treatments that are on the way. It is encouraging that these efforts have resulted in the provincial governments agreeing to start negotiations on November 25th to secure access to Luxturna.

On behalf of the Board of Directors, I would like to extend my thanks and congratulations to the CCB GTT staff and volunteers for their continued support to answer the technical needs of those blind or partially sighted.  Our GTT team continues to ensure their awareness and education of cutting edge technology and applications as they evolve, and ensures this expertise is available to all, whether beginners, or tech savvy.   A great job and a big thanks for always keeping the bar high.

In reflection, as we continue and advance our roles in eye care, wellness, and advocacy through many strong partnerships in communities, provinces and territories, nationally, and internationally, it is through the work of all that we are able to proudly speak on behalf of the community we represent so well.  This community is made up of members, committees, staff, the many volunteers who assist in the cause, and on behalf of the National Board of Directors, I would like to take this opportunity to wish everyone a safe, and very happy holiday season, and the best for 2022.

Jim Tokos

National President

Announcements

White Cane Week Event Schedule

White Cane Week events for 2022 are being expanded!  Because of that and needing to move things because of the COVID-19 pandemic both live and virtual White Cane Week events will be taking place in two different times during the year.  While there will still be White Cane Week events in February, several will be happening during Vision Month in May.

White Cane Week Scheduled Events – February 2022

February 12 Virtual

Expo Forum: Reforming Ontario’s Assistive Devices Program

Release of findings from patient survey on Ontario’s Assistive Devices Program designed to give the present state of this important program and provide recommendations on, whether or not, it needs to be reformed and/or updated.

February 18

White Cane Magazine publishing date

February 22 Virtual

Preventable Blindness Summit

A discussion on preventable vision loss and blindness for over 8 million Canadians, including the need for eye examinations, eliminating the COVID-19 backlog, cataract surgery and the need for reducing wait times, requirements of vulnerable seniors and children and investment in research to reduce the number of people living with uncorrectable vision loss by 2050.

Vision Month Scheduled Events– May 2022

May 2 and 3 Live in Ottawa

Hill Day

May 9

White Cane Magazine second edition publishing date

May 16 Virtual and Live in Ottawa

Vision Month Summit on National Vision Health Strategy, Vision Desk and increased Vision Health Research Funding.

A discussion on achieving the vision health communities push for a National Vision Health Strategy, a Vision Desk, and increased Vision Health Research Funding and how best to engage Canadians and government in preventing blindness and restoring sight.

May 17 Virtual and Live in Ottawa

CCB Vision Month 2022 Gala Dinner

May 28 Live in Toronto

Toronto Visionaries Experience Expo Vision Consumer Show

May 28 Virtual and Live in Toronto

View Point and Vision Month Forum – a combined FBC and CCB Event.

A Canadian Council of the Blind and Fighting Blindness Canada event discussing a patient’s right to be informed consent and full disclosure for whatever the treatment, including all of the informed therapies, their side effects, dosage frequency, all options, even costs (should never influence what a patient is prescribed) before a treatment decision is made.

CCB and AIRA Partnership

As we head into 2022, I am pleased to let you know that our partnership with AIRA continues. Below are the details.

I’ll also tell you about a pending plan for AIRA to partner with the TD Bank, and some AIRA holiday specials so read on!

Organization Plan  

Aira is proud to partner with The Canadian Council of the Blind (CCB) to make visual interpreting services available to more people. To encourage the CCB members to try our service, we are extending special CCB Membership pricing starting on October 1st, 2020.  

CCB Member Intro Plan:

Minutes: 30 per month

Price: $20.00 per month

Plan Share: no additional users  

CCB Member Enhanced Plan:

Minutes: 140 per month

Price: $99.00 per month 

Plan Share: up to two additional users  

To qualify for these plans, one must be a member in good standing of The CCB or its affiliates or chapters for the current membership year. Membership will be verified through the CCB head office.

Aira provides visual information through our smartphone app and trained agents, 24/7, 365 days per year. Agents are screened and adhere to strict security protocols. Our app uses the camera of your smartphone plus GPS and other powerful tools to give you the visual information you need, on your terms. To learn more about Aira, visit our web site at

www.aira.io or call our Customer Care Team at 1.800.835.1934. 

From the AIRA partner @TDBank: Aira will be rolled out in 2022 for TD branches in Canada to further optimize independence and accessibility for our blind and low vision community in Canada.

Regarding other news, AIRA’s Holiday Cheer promo will take place from now through December 31, 2021. 

You can win prizes just for using the AIRA Access Network partner locations. Each Friday through the end of 2021AIRA will draw an account from those that have used any of AIRA’s Access Network partner offers since the beginning of the contest. There will be two separate drawings, one for US customers and one for customers in Australia, Canada, New Zealand and the UK. 

Access Network partner offers include any location-based offers, like airports in Toronto, Winnipeg and Vancouver. On-line Access Network offers include museums and zoos from the Nova Scotia Museum to Shedd Aquarium and the Smithsonian National Zoo. Vispero, maker of JAWS, ZoomText and fusion also has an Access Network offer that qualifies. 

For more details about this promotion, visit:

http://www.aira.io/access-promotions-overview.

Submitted by Leo Bissonnette, CCB 1st Vice President

Emily’s Story

Emily Payne is a CCB member from Newfoundland. She is 61 years old, a mother of two, and was born with a lazy eye and near sighted.

Emily had vision issues as a child, and continued to lose more sight over her life. She was diagnosed as legally blind in her right eye by the time she was an adult, and her sight in her left eye continued to deteriorate as well.

13 years ago, Emily moved back to Newfoundland from Nova Scotia, where she was living at the time. At this point her eyesight was so bad; she had to give up her driver’s license.

Emily continued to struggle with her eyesight, and with the onset of cataracts, coupled with a bleed in her eye, by the end of April 2020, she had lost all clear vision in her good eye.

She met with her doctor, who suggested surgery. The surgery would remove the cataracts, and replace the lens in the eye with a special lens that would correct her near sightedness. With financial support from her sister to cover the cost of the surgery, which she is extremely grateful for, Emily went ahead with the procedure in March of 2021.

“The day after surgery, I could see the best I’ve ever seen in my life.” Emily recalls. “I can now see myself clearly in the mirror, and without glasses–something I could never do before.”

It’s been 8 months and she’s still feeling childlike wonder every time she opens her eyes and looks around.

“The biggest thing for me is seeing colours and texture.” she explains. “going for a walk and seeing buds growing on trees, seeing stars—it’s these little things that you don’t’ notice that really make a difference in life.”

Her improved vision has made a big difference in her physical activity as well.

“This is the first time in life I’ve had normal vision, and it’s made such a difference in my mobility.” Emily says. “I can move faster now, and with confidence. In fact, I recently just walked 5km, something I wouldn’t have done before the surgery.”

Emily has been very involved with CCB over the past 5 years, which she credits as being a life saver. She loves the camp, games, sports and the events CCB hosts, and she really blossomed as a person by becoming involved with the organization. It gave her a chance to be herself amongst people who understood what she was going through. A true peer supportive environment.

Emily is still a full member of CCB and proud!

Emily’s story is a true reminder of a big part of CCB’s mandate—eye health. It speaks to the importance of taking care of your eyes, and seeing an eye doctor on a regular basis. CCB is proud to have Emily as a member, and we wish her well as she continues to explore her new world.

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ArriveCan App

In recent weeks much has been written about the ArriveCan app: concerns about the accessibility of the app for visually impaired individuals wishing to travel to the United States. The CCB National Advocacy Committee has been very active on this file having had productive discussions with the Canadian Border Services Agency.

General Information for Travelers with Disabilities                                                                    

As a Canadian citizen you will not be denied boarding of your flight or entry into Canada if you do not use ArriveCAN. (This information is found directly on the ArriveCAN website: Use ArriveCAN to enter Canada – Canada.ca)

Persons with a disability are exempt from having to provide their information by ArriveCAN and will not be subject to any consequences.

A verbal declaration can be provided to the CBSA and paper format of any required documents such as your vaccine status and COVID test results can be given to the CBSA and/or to PHAC officers.

If you have an inquiry, please contact the ArriveCAN traveller support line by phone at 1-800-461-9999 (toll-free in Canada and the USA). Live agents are available from Monday to Friday from 7am to 8pm. Saturday, Sunday and Federal statutory holidays from 10 am to 6 pm ET.

Mandatory vaccination to board

tarting October 30, 2021, persons 12 years of age and older need to be fully vaccinated in order to board domestic or international flights departing from most airports in Canada, including charter and foreign airlines carrying commercial passengers.

There is a transition period until November 29, 2021, which will allow travellers who don’t qualify as fully vaccinated to travel if they can show a valid COVID-19 molecular test taken within 72 hours of travel.

In addition to the proof of vaccination requirement, all existing mandatory pre-boarding and health requirements for passengers remain in place, including health check questions, and wearing masks inside airports and while on board the plane.

Pre-entry testing and other requirements to follow for your trip- COVID-19 vaccinated travelers entering Canada – Travel restrictions in Canada – Travel.gc.ca

  1. Get a pre-entry Covid-19 Test within 72 hours of the scheduled departure time of your last direct flight to Canada
  1. Provide proof of a COVID-19 negative molecular test result to enter Canada
    1. Accepted types of molecular tests: – The most common is the PCR or Polymerase chain reaction but there are others including (NAT, NAATs and RT-LAMP). Antigen tests are not accepted.
    1. These test use methods such as nasopharyngeal swab, nose swab, or saliva sample.
  • When you arrive at the border, you must present an accepted negative molecular test result (paper or electronic proof) that includes:
    • Traveller name and date of birth
    • Name and civic address of the laboratory/clinic/facility that administered the test
    • The date on which the test was conducted
    • The type of test conducted
    • The test result
  • Quarantine plan is required for travellers who do not qualify as a fully vaccinated traveller.
    • These travellers must be prepared to quarantine for 14 days. You may be asked to explain your quarantine plan at the border.
  • Provide an official proof of vaccination
  • Checklist of what you need to have ready at the border:
    • ArriveCAN receipt, if applicable
    • Pre-entry COVID Test Result
    • Proof of Vaccination
    • Other travel documents

The CBSA is committed to meeting its obligations under the Accessible Transportation for Persons with Disabilities Regulations, by providing the following accessibilities services:

  • Expedite the border clearance process by directing the traveller, along with any support person who is accompanying them, to the front of the line or to a different line designated for expediting the border clearance process;
  • Assist the traveller with proceeding through the steps of the border clearance process, including by providing verbal or visual cues or additional instructions;
  • Assist the traveller with completing a declaration card, or collect a verbal declaration;
  • Provide assistance to the traveller with the placement of personal items on a counter for inspection and with their retrieval, if the traveller must undergo more extensive clearance; and
  • Provide instructions in writing or, if possible, in American Sign Language or Langue des signes Québécois, where requested.

While all new border services officer (BSO) recruits receiving training on disability awareness as part of the CBSA’s Officer Induction Training Program, the Agency is in the midst of developing a dedicated training course to educate CBSA staff of the support options that need to be offered to persons with disabilities as they undergo border processes.  This course is expected to launch in December 2021.

For more general information on services the CBSA provides to travellers with a disability: https://www.cbsa-asfc.gc.ca/travel-voyage/disability-handicap-eng.html

Access to Luxturna:

Provincial governments agree to negotiate access to new sight-restoring gene therapy treatment.  I am pleased to advise that the pan-Canadian Pharmaceutical Alliance (pCPA), representing Canada’s provincial governments, issued a letter of engagement today with Novartis to launch the negotiation process with the goal of providing a national framework agreement for access to, and public funding of, voretigene neparvovec (brand name: Luxturna). 

This is a major milestone.  

The provincial governments agreed that they hope to publicly fund Luxturna and have now entered into negotiations to accomplish this goal. pCPA advised their performance goal for the length of negotiations is up to 4 months. 

TIME = SIGHT 

For Canadians able to benefit from the treatment, they are losing photoreceptors every day was our reply.  There needs to be photoreceptor available for the treatment to restore sight, maintain their independence, and see the stars for the first time. 

Together with the CCB as well as our other vision partners, and the vision loss community, we have been actively advocating for access to Luxturna, and clear a path forward for future treatments to be publicly funded. 

When research delivers treatments to transform lives, Canadians need access to these innovative treatments. 

We will be updating www.ApproveLucturna.ca shortly and advising the community of this milestone. The new website content will encourage Canadians to email their Premier and Health Minister to thank them for working towards access to Luxturna by starting negotiations, but please expedite these negotiations. 

A day to celebrate, we are one step closer to public funding of Luxturna. 

Doug Earle, CFRE

President & CEO, Fighting Blindness Canada

Irene Lambert to Receive the Chris Stark Distinguished Advocacy Award:

For those of us, who have come to know Irene, we are pleased to share this wonderful news and we congratulate Irene!

Irene brings to all that she has done a passion and keen understanding to the various tasks she has taken on. All this was done starting in the 1960s at a time when individuals started advocacy initiatives. Irene and Chris were in that first generation of advocates. They then mentored others and helped consumer groups assume roles in the future…. Irene, when sharing her memories of her advocacy work, talks about her collaboration with Chris!

Barrier Free Canada – Canada sans Barrieres is pleased to share the winner of the Chris Stark distinguished advocacy award below! 

We congratulate Irene Lambert of Montreal as the winner of the 2021 Chris Stark Distinguished Advocacy Award and we thank all those who took the time to submit applications.

Irene exemplifies the true meaning of the definition of advocacy!

She has and continues to advocate tirelessly for Canadians with disabilities, she has fought countless battles in order to ensure that the rights of Canadians with disabilities are recognized and protected but most of all her agenda continues to be that of Canadians with disabilities!

Congratulations to you Irene on winning this prestigious award! 

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In The News

Eone Launch the Switch, Their Latest Watch for the Visually Impaired

Eone have launched their new timepiece, called the Switch. For anyone unfamiliar with Eone, they are a specialist watchmaker who create tactile watches that tell the time through touch. They are designed to make watches inclusive for blind or visually impaired wearers. They also happen to look awesome with a futuristic vibe.

The Switch uses the same ball bearing technology as their other watches like the Bradley.

Instead of traditional hands, ball bearings orbit a central track and a peripheral one that denote hours and minutes. On the new watch, those tracks have been deepened to improve the watch’s performance by limiting the impact of external debris. A solid quality of life update.

Further quality improvements include tapered edges to provide better visual cues for anyone with limited sight. Similarly, the edge of the case is now slightly angled so it’s easier to see the peripheral ball bearing, which means the bottom of the watch has a diameter of 41mm while the top is 39mm. And it’s all produced in stainless steel with silver, gold or black colorations.

A However, where the Switch really comes into its own is the display ring, or what you’d probably call the bezel on a regular watch. The ring is detachable through a twist and lock system that means you can swap between a number of different rings that each give the watch a unique style. It allows for dramatically more personalization and you can swap between designs based on the occasion.

At the simple end of things are regular 12-hour markings, which make the Switch almost identical to the Bradley. But things quickly get more exciting with the ‘sunflower’ ring, a type of guilloché with a spiraling pattern of small diamonds.

It’s not only visually interesting but is also incredibly tactile.

In the future, Eone plan to release new rings that you can buy separately, including limited edition ones and collaborations. That means you only have to buy the core watch once but you can change its style whenever you want.

The Switch costs $360 in silver or gold and $375 in black, with the basic ring, the ‘sunflower’ and an alternative 12-hour scale included in the price. Future rings are expected to cost $40, excluding limited or special editions.

For more information on this accessible watch, please visit:

by Michael Sonsino

REMINDERS

Membership Madness

Hi Everyone!  Becky from the office here. The rebate time is over.  White Cane week orders should be sent in as soon as possible.

Early Bird Draw Deadline – October 25, 2021

Chapter Rebate Deadline – November 29, 2021

All 2022 Memberships Due – December 31, 2021

White Cane Week Orders Due – December 13, 2021

WCW Insurance Requests Due – December 13, 2021

These dates refer to the time that the memberships arrive in our office either by mail, or by using the new online option introduced last year. https://ccbnational.net/shaggy/membership/

I look forward to receiving your chapters’ memberships.

Becky

DON’T FORGET DONATIONS!

Donations Received in the office in 2021 are the only ones that can be receipted for 2021.  Remember to send those donations in if you want receipts.

www.ccbnational.net                      1-877-304-0968

 [email protected]

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