An Unhealthy Medical Environment in Ontario

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

 

 

ADVOCATING FOR ACCESS: Securing Our Rights by Speaking Up

Note to Readers

 

This article was written at the end of the 20th century. More than a decade later it is interesting to see the results.. It is evident that the access rights obtained have a short shelf life. Our son is fighting the same access to information struggle we thought had been resolved 20 years ago. Access to financial information is still problematic for persons who are blind and past agreements have been forgotten or ignored. Much progress has been made with telecommunications and broadcasting services but each change seems to start without access built in resulting in the same barriers arising time after time with the introduction of each new service enhancement.

 

Chris Stark

 

ADVOCATING FOR ACCESS

Securing Our Rights by Speaking Up

 

BY MARIE LAPORTE-STARK

 

Humans are creatures of habit. It is difficult, and quite often frustrating, to bring about change. And when services are finally made more accessible to consumers, organizations often take the credit without mentioning how the service improvements came about.

 

As a so-called  advocate,  I can give you the other side of the story.

 

Although my goal is usually to improve my own quality of life, it is certainly rewarding to know that changes I helped bring about have greatly benefited a lot of other people.

 

When I was a child growing up with blindness in the late  50s and early  60s, my parents were given the choice of keeping me at home without an education, or sending me to a school in Montréal for children who were blind. Access to information was not a problem at l Institut Nazareth. Braille was used in all written communications, including text books and exams.

 

My eyes were quickly opened to communication barriers when I ventured towards personal independence as a young adult moving to university. Volunteer readers had to be used to record textbooks, and they were not always reliable. Notes had to be borrowed from other students, who were not always present in class. Essays had to be typed on a portable typewriter. Each teacher had to be approached for oral exams and a description of charts and other materials on blackboards. These were my first steps towards standing up for my rights, towards advocacy.

 

A few years later, raising children illustrated to me in an even more tangible way just how important it is to have information. Knowing what my children were doing by the sounds they made meant that I could effectively manage their care without even being in the same room. My daughter points out that it was disconcerting to hear me tell her not to play with something when I was not even in the room!

 

Within the home, access to information was rarely a problem. The children made lots of noise, the kettle sang when the water was hot, I labelled the microwave controls in Braille, the television dial clicked once when each channel was changed and the cat mewed when it wanted to be let out.

 

However, outside the house, access to information was problematic at best. Fortunately, while our children were young, my husband   who also has a vision disability   had enough sight to do the groceries, reading prices or checking bills with a magnifying glass. As his sight deteriorated, however, the information barriers gradually grew, challenging our independence, self-reliance and control over our personal lives.

 

Early on, the education system showed inflexibility and intolerance towards parents who were blind. Although students who were blind and integrated into the mainstream school system could have textbooks in Braille, I was told that I could not have Braille copies of the books used by my children. And yet, note after note came home urging parents to participate in their children’s education, to practise math and other drills with their children. (Of course, these notes were not in a form that I could read.)

 

Using the ingenuity and skills that had gotten me through university, I found ways around most of these barriers to participation in my children’s education. However, I slammed full-speed into a brick wall when it came to report cards. Even before they learned to read, our children were expected by school authorities to read their report cards to us, or else we were expected to get a volunteer to read the documents to us.

 

Our children were uncomfortable with this, even after they had learned to read. And using a volunteer from outside the family seemed to be an unwarranted intrusion into our family   an invasion of privacy.

 

Tackling the school board on this issue showed just how hard it is to change people’s attitudes. One teacher said:  Don’t worry about what is on the report card, as I will do what is best for your child.  A particularly insensitive principal stated publicly that his responsibility was services to children and not parents. If we could not read print report cards, that was not his problem, but our responsibility. (I guess we were to accommodate the school by finding ways to read print.)

 

This reverse accommodation  expectation propelled the issue to the superintendent of schools and the board of education, who replaced rejection with bureaucratic apathy. A board trustee even came to tell us that our demands for access to report cards were hurting our children’s education.

 

However, each time a report card arrived, the indignity spurred us on to redouble our efforts to obtain access in a dignified and equal manner like other parents. We filed a complaint with the Ontario Human Rights Commission. After several more years of debate, a new superintendent was appointed and soon we had a mutually acceptable agreement. An Alternative Format Policy was developed and adopted by the school board. By the time our son reached Grade Ten, we began to receive report cards we could read independently. This policy means that, today, other parents who are blind can obtain report cards and other materials in a form they can read independently   just as parents with sight have been doing for decades.

 

From this struggle, we learned that resolving such issues would be long, drawn out, emotionally draining and painful. There would be many disappointments and setbacks. However, we learned that many people with disabilities can benefit from the removal of barriers that force us into a role of dependence as a matter of administrative convenience, without regard for the human cost of such shortsightedness.

 

For years, our requests for information and accommodation were frequently met with: Well, can’t your children do that for you?  But we had long since decided that our children should not be required to assume any more obligations or responsibilities, because of our blindness, than other children. Perhaps the greatest example of this pass-the-buck attitude towards customer service occurred with a local grocery store.

 

For a number of years, we had been provided with help by store staff to select grocery products from the shelves for purchase. As a result of competition, the store began losing money and changed its approach to customer service. One day it was suggested that we should get our children to do the grocery shopping. When we protested, the owner dismissed our concerns.

 

Another complaint to the Ontario Human Rights Commission was filed, and dragged on for three years. Our point was that, if customers who are blind were provided with access to the same information provided to sighted customers   on signs, product labels, price stickers, and sales flyers   we would really enjoy doing our shopping without any assistance from the store.

 

As the issue moved towards formal review by the commission, the store was sold and the new owners were anxious to settle. Today, the store will provide assistance, in the form of a knowledgeable employee who walks through the store with one of us and selects products that we choose.

 

Also as a result of this settlement, the store’s weekly sales flyer is uploaded every week to a local computer bulletin board service (BBS). We often get the electronic version before the print flyer is delivered to our street. Now, any person who is blind and computer literate can access this sales flyer   and save money on specials just like the rest of the community.

As we battled the grocery shopping issue, we also began to have problems with money management, resulting from lack of access to bank statements and reports. The issue came to a head when the bank started rolling over term deposits at a low rate of interest because we had not reinvested the money. The bank said we had been sent print notices   which we could not read independently. We also discovered that home mortgages could now be paid on a bi-weekly basis, substantially reducing the interest paid. This had been promoted to customers in written form and many were benefiting long before we accidentally learned about it.

 

We discussed our concerns with bank officials. Over a period of several years, it became clear that the bank viewed our desire for access to information as a matter of charity. On several occasions they even went so far as to point out that it  gave money to an organization for the blind  and that was where we should be going for help with our financial management.

 

This time, we approached the Canadian Human Rights Commission for help, since banks are under the jurisdiction of the federal government. After yet another year of debate, the complaint was officially accepted by the commission in September, 1991. As discussions continued, the issue took on a life of its own and expanded to include electronic banking, banking machines and access to all bank publications.

In an effort to resolve the complaint, the Royal Bank of Canada introduced Braille statements for customers with personal chequing accounts. By that time, however, we would not settle for anything less than policy commitments and an acknowledgement of our right to equal access to bank-generated client information.

 

Eventually, in an effort to move this matter forward, we settled in 1996. However, the additional access to information and the promises of more to come, including access to automated banking machines (ABMs), are gratifying indeed. The industry may maintain that its efforts are not a result of complaints, but the fact remains that ABMs have been around now for more than a decade   and Braille has been around for more than a century   and yet access to information for customers who are blind is just now being seriously considered by the chartered banks.

 

The Royal Bank of Canada outlined a new policy to improve its service to people with visual disabilities, and agreed to report annually to the Canadian Human Rights Commission until adequate access to automated banking machines had been provided to customers who are blind. Less than a year later, the Royal Bank opened its first banking machine with audio output.

 

While the bank issue was crawling along, another information barrier was creeping into our home life. Bell Canada had asked the Canadian Radio-Television and Telecommunications Commission (CRTC) for permission to charge people who are blind for directory assistance. Yet the company had no intention of making telephone directories available in formats accessible to these customers. A small band of concerned consumers from across the country wrote letters, briefs, interventions and petitions to the CRTC, and ultimately the commission denied this component of the Bell Canada rate increase application.

 

However, once raised, the issue of access to information within the telecommunications network would not go away until resolved. Several years of correspondence between the CRTC, Bell Canada and ourselves eventually evolved into a formal application for access to information. While we did not achieve all that we had hoped, the ice has been broken. Under the Telecommunications Act, we are entitled to know what we are paying for and what services we can expect for our monthly subscriber’s payment.

 

A similar issue intruded into our dialogue with the CRTC when the cable industry introduced new channels and required all subscribers to accept and pay for these services (known as a  negative billing  process). Of the many documents the cable company was required by the CRTC to provide to customers, none was given to us in a format we could read. So, we approached the CRTC and requested that Rogers Cable Company be required to provide its subscribers who were blind with the same information that was required to be circulated to all subscribers.

 

Like other issues, the focus kept expanding and a resolution seemed to slip further away. In an effort to get the process moving, we filed a complaint against the CRTC with the Canadian Human Rights Commission, expecting that it would dismiss the complaint if any positive movement toward greater access occurred. I believe that this action encouraged the CRTC to take both the Bell Canada and Rogers Cable issues much more seriously and issue its directives. We and other customers who are blind can now receive our Bell Canada account statements and bills, and the channel line-up from Rogers Cable, in Braille.

 

However, significant issues remain to be resolved. The CRTC has not established a policy to ensure that those companies it regulates include customers who are blind equally in their service-delivery systems.

 

Visual-only displays continue to become more common in the telephone industry to identify incoming callers and provide a host of other information. The information on these screens will become more essential as telephone companies move into direct competition with cable and direct satellite to home services for customers. Telephone directories, including Yellow Pages listings, needed to make full use of telephone service still remain marginally available to customers who are blind.

 

Another outstanding issue is access to television program channel listings. Most cable services offer program listings to subscribers which scroll down half of a television screen, with the other half of the screen and all of the audio devoted to promotional advertisements. All subscribers contribute to the service, but only sighted subscribers can use it to determine at a glance what programs are being aired at a specific time. Sighted subscribers also have access to several newspaper or magazine sources for this program information. Even though persons who are blind do not have access to this information, there is strong resistance to making this service accessible to them.

 

The use of visual displays and music as a pause in the announcer’s commentary, or as a filler or break in programming, also creates a communication barrier. This is quite a serious issue since, for example, the weather channel gives all individual temperatures visually with music and no verbal announcements. What is more important on a weather information service than the temperature information? Yet the CRTC would not issue a policy addressing these concerns. This placed the access burden back on the shoulders of persons who are blind by deciding that this issue had to be addressed service-by-service, through individual complaints, or at the time of license renewal by intervention.

 

However, the CRTC did decide that cable companies had to make their community channel program information available in a usable format for persons who are blind, and that the community announcements must be made available in both audio and visual formats. The precedent has been set, but full access is a long way away.

 

The Royal Bank of Canada is putting into service a few audio banking machines, and the Canadian Standards Association has established a committee to develop a standard for barrier-free design for ABMs. The Canadian Cable Television Association is supposedly developing industry guidelines on access for persons with disabilities.

 

In the spring of this year, the CRTC issued Public Notice 1998-44 announcing a Canadian television policy review requesting public comments. I am pleased to see that, among the many questions posed, Question 58 relates to making television programming reasonably reflective of, and accessible to, persons with disabilities, and Question 66 relates to the probision of video descriptive services for people who are blind.

What will the future hold? Will direct home satellite service be fully accessible to a person who is blind? Will the information displays on smart cards be usable? Will electronic ticketing systems be accessible? Will home shopping by phone or cable be user-friendly for all shoppers? I believe that our greatest challenge in the future is to maintain access as new technologies and service models are introduced.

 

Choice is an integral part of consumerism. I dream that in the next century, when I choose to request a Braille menu, a Braille phone bill or a Braille manual for my bread maker, my request will be embraced warmly by the service provider. Customer service is also for consumers who are blind. Companies must come to accept that equal pay for services really warrants equal access to service information, in the most effective medium for the user.

 

Marie Laporte-Stark is an advocate and freelance writer living in Ottawa, Ontario.