An Unhealthy Medical Environment in Ontario
As I age, it is difficult to do so with dignity. The health needs expand and become more complex, but the available information – in usable formats – decreases seemingly in direct proportion to needs.
The provision of multiple formats seems to have undergone a metamorphosis. It is no longer easily available and no longer produced in a usable way. Recently, I had a Canada Pension Plan (CPP) form sent to me. It took six months to get it. It was simply a translation of the print form with Canada’s two official languages all jumbled together, and filling it out was impossible. One of the forms they offer is a survivor’s benefit form, which CPP recommends you fill out immediately. But if you are a person who is blind, I guess immediately means after you’re long gone. Health Canada and the Provincial Ministry of Health are particularly bad when it comes to informing people who are blind in formats we can use.
When you pick your medicines up at the pharmacy, all the health education materials are available in print only, and the medicines have no tactile markings. You can’t get an electronic summary from the pharmacist. Granted, now in Ontario you can have half an hour consultation with the pharmacist, however, in my view this is of limited value because you go away with nothing to have as a reference about some very complicated discussions, such as the effects of medicines, etc.
I now use blister packs in a little cardboard holder. Each has seven days worth of medicines in the right pouches , for the right time, starting on the left with the first dosage of the day in the morning. It would seem that you’re on your own. Searching through Google is a great resource. Talking blood pressure monitors, talking blood glucose monitors and talking thermometers are helpful. Some of the health material you can scan. It is however upsetting to know that your tax dollars have paid to inform sighted people, but not you as a taxpayer who is blind.
If you have to watch the contents of food, such as the amount of salt, then you are out of luck. All the packaging is not accessible, and the ingredients are only presented in Print. Health Canada and its Agencies require product manufacturers to list ingredients in products on their packaging. However, Health Canada obstinately refuses to make it possible for people who are blind to get access to this information. The Health Canada regulations are exclusionary and the human rights authorities play the jurisdictional game – It is provincial jurisdiction, or is it federal jurisdiction? So Health Canada can continue to adversely harm the health of people who are blind.
I thought it was appropriate to review some of the basic principles of multiple formats and provide some resources.
Multiple formats are not translations. They are descriptive processes where charts, graphs and diagrams are interpreted. Multiple formats have separate versions in the English and French languages.
Multiple Format Checklist
This checklist is an abbreviated form of the more detailed “Manager’s Guide to Multiple Formats” and its accompanying appendix of resources, produced through the Assistive Devices Industry Office of Industry Canada for the Government of Canada.
All Canadians have the right to public information in a format they can access. This right is protected by the Canadian Charter of Rights and Freedoms and other federal legislation.
The Government of Canada Communications Policy requires that public information be made available in multiple formats (formats other than traditional publishing) for access by people with disabilities.
Making publications available so they can be accessed by as many people as possible not only conforms with laws and policies, it’s also good customer service.
Today’s aging population, explosion in information technologies and increasingly diverse society have left the printed page as only one of many ways to deliver information.
Different Methods of Publishing
This checklist examines some of the more commonly used formats and communications methods used in today’s society.
Accessible Web Sites: Some people who are blind or have low vision use “screen reading” software that can convert written text on web sites into other formats they can access, such as audio or braille. However, the screen reading technology cannot interpret graphics or text that appears in graphical form. For this reason, web sites need to be made accessible by ensuring that all visual and multi-media components are available in text.
A number of measures to make federal web sites accessible are mandatory under the Government of Canada’s Common Look and Feel Policy.
Audio: Publications produced on cassette tape, c.d., or computer MP3 files are appropriate when the print version cannot be accessed. A professional narrator reads the text navigated by users through tone indexing that marks new sections. Today the best standard to use is the DAISY 4 standard.
Computer Diskettes and other portable electronic storage methods: For people who cannot be sent publications in electronic format via e-mail or over the web, diskettes may be a solution. There are a range of storage formats including CDs, DVDs and ZIP disks.
Braille: Braille is a reading system of raised dots. Named after its inventor, Louis Braille, the system’s basic “braille cell” consists of six dots grouped in two vertical columns of three dots each. There is English Braille and French Braille. Grade 1 Braille is the most basic representation of letters, numbers and punctuation while Grade 2 combines approximately 300 contractions and is the most commonly used.
Described Video: Described video, also known as audio description, has all relevant action scenes and on-screen text (such as credits) in a video, TV program, web-based multimedia or movie described and read by a narrator. Described video can be “open” or “closed”. When “open,” the descriptive audio can be heard by all viewers. When “closed,” viewers must turn on the TV set Second Audio Program (S.A.P., also known as the second audio channel for stereo broadcasting) for access.
E-Text: E-text, or electronic text, refers to publications in which all graphical components, including relevant photographs, charts and illustrations, are fully explained in text and stored electronically for distribution by e-mail, web page or diskette.
Large Print: Large print publications use a set of guidelines that improve readability beyond standard design and formatting. This includes a larger point size for characters – 16 points is recommended – plus the use of non-serif fonts, increased spacing and improved contrast. The aging trend means that more people than ever before have low vision and require large print. For this reason, it may be practical to have the original publication produced in large print.
On-Screen Text: On-screen text converts the spoken word and other audio contained in videos, TV programs, web-based multi-media and movies to text. The text can be in the form of subtitles used to communicate the spoken word in a different language or in the form of captioning for people unable to access audio. Closed captioning is seen with a decoder while Open captioning is visible without a decoder.
SignWriting: “SignWriting” is a writing system using visual symbols to represent the handshapes, movements and facial expressions of American Sign Language, Langue des Signes Québecoise and other signed languages. SignWriting is currently used mainly to teach signs and signed language grammar to beginning signers. It is also increasingly used as an alternative to standard text in teaching grade school students whose command of sign language is greater than that of printed English or French.
How to Prepare for Multiple Formats
Use Plain Language: Keeping your text as clear and as easy to read as possible is not only beneficial for clients with learning disabilities and low literacy skills, it improves comprehension for all clients and will make adaptation to other formats easier.
Produce a Full-Text Template: At the same time a published product is developed, all of the graphical and multi-media elements should be fully explained in text by the original authors. This file is known as the “full-text template” from which multiple formats can be produced in an accurate and seamless way. The template is a multiple format in itself, representing e-text that can be used for distribution.
Adjust Budgets: Use a cost-effective approach that includes multiple formats according to demand. In some circumstances, it may be appropriate to combine two formats into one. For example, a print product could be produced as large print.
Produce upon Request: Using the full-text template, produce multiple formats upon request. There is an obligation to provide publications in a format clients can access.
Inform everyone in the publishing process: Share this guide with everyone involved in the development and distribution of publications including front office people, authors and editors, graphic designers, webmasters, project managers, communications people and order desks. Inform both staff and outside contractors.
How to Price, Promote and Accept Multiple Format Requests:
All formats priced the same: All formats of an information product must have the same price. Similarly, if the conventional product is free, so too must be all of its multiple format equivalents.
Promote availability: There are a number of ways you can promote the availability of multiple formats. Use varied media including radio and the web; register with 1 800 O-Canada (1-800-622-6232); advertise with radio reading services; and include a message on all products, such as “This publication is available upon request in accessible formats.” The message can be produced in Braille and large print.
Accepting requests: Multiple format requests should be accepted at all the same order points as conventional products, including product catalogues, toll-free numbers and web sites. Ask clients what format they require for access. In some cases, a full-text electronic version can be e-mailed if the client has e-mail access. Avoid referring all clients to the web as a one-stop solution because, as popular as the web has become, not all clients have web access or the ability to properly navigate the web. Also, be prepared to accept requests that come in via a multiple format.
Summary Checklist:
Have webmasters follow the Common Look and Feel (CLF) Policy. See the CLF web site at:
http://www.cio-dpi.gc.ca/clf-upe/
Promote the availability of all publications in multiple formats.
Familiarize all order desks with multiple formats and prepare them for requests. Inform them that there is an obligation to provide information in a format clients can access.
Create a full-text template for all publications as publications are first developed.
Have a full-text template produced for all existing publications that are promoted and considered popular.
Provide full-text templates to multiple format suppliers to produce formats as they are requested. The templates are also a multiple format in themselves and can be sent to clients via e-mail or diskette, as appropriate.
For More Information:
For more details, consult the “Manager’s Guide to Multiple Formats” and its accompanying appendix of references.
Web Link:
www.collectionscanada.gc.ca/the-public/003/005003-4200-e.html
It seems to me that very little attention is being paid to the availability of multiple formats by various services both public and private. As shown by the above, the information is available, and the how-to knowledge exists, yet most websites only offer downloads in PDF. I had to deal with the frustration of Service Canada telling me to call the originating department for a multiple format publication that they would send the general public directly from their office. One can only wonder, does service mean making it harder for people who are blind to access information? The call centre staff still do not know about multiple formats, and I had to tell them where on the web it said a brochure was available in DAISY format. Before they read it for themselves, I was treated like a crack-pot.
I wanted to get a form from a Service Canada office. They could tell me its street address, but not where it was in the building. That particular building is a block long, and at least 30 or 40 businesses on the same floor. Obviously there is no descriptive narration or wayfinding to help people who are blind find Service Canada service centres.
It seems to me that the low demand for multiple formats is in part due to the herculean effort required to get them. They are not promoted. It takes months to receive them, if at all, and they keep saying, “Well, it’s on the web.”
You would’ve thought that health professionals would be the most concerned and sensitive to these needs. My experience is that the exact opposite is the reality, with one notable exception – a specialist who will dialogue with me via email. I also sometimes tell medical professionals how to block and copy material and send it to me electronically. When I have access to the information, I am in a stronger position to self manage my health care.
There has to be a significant improvement in the flow of health related information to people who are blind by government agencies, practitioners and public education organizations like the Heart and Stroke Foundation. Telling people who are blind that they are a not for profit voluntary organizations is not a justification, but rather a sad commentary on their exclusionary attitudes. This is just how I see the issue.
Chris Stark