Too Few Canadians Accessing Low Vision Services (Low Vision Story, Part 2)
ByJoAnne Sommers

Only one in 10 Canadians with low vision problems is getting the support services they need, according to the head of the country’s only accredited low vision clinic.

One of the major issues in terms of accessing appropriate services is the lack of awareness on the part of both patients and some eyecare professionals of what exists, says Ann Plotkin, head of the Low Vision Clinic, Centre for Sight Enhancement (CSE) at theUniversityofWaterloo. As well, relatively few people who get a low vision diagnosis are referred to the services they need, she says.

“People often go into stun mode when the doctor tells them they have a problem, such as wet AMD (Age Related Macular Degeneration), which has few treatment options. As a result they don’t hear what comes next. Rehabilitation options exist but either they are not told about them or they don’t comprehend what they are hearing.”

Such a response isn’t surprising, says Ken Patterson, westernCanadasales representative for HumanWare, a leader in assistive technologies for vision, including products for the blind and visually impaired.

« As a society, we take vision for granted and the moment we start struggling, we tend to give up because we think there’s nothing we can do, » he says.

Plotkin says it is important for eyecare specialists to put a low vision diagnosis in the proper perspective for their patients.

“People often get hung up on the word ‘blind’. They don’t understand that it’s only a number (for example: 20/200) and that it doesn’t mean they have no remaining vision. ECPs should try to keep things positive and if they aren’t in a position to help the patient, they should immediately refer them to a low vision clinic or a specialist who can. Don’t wait until the person is legally blind and their quality of life has been severely compromised.”

Finding a low vision specialist can also be a significant challenge. “There aren’t enough services available in Canadaand some cities have no one who provides low vision services,” says Ryan Heeney, national sales manager, Canada for Eschenbach Optik of America.

According to Heeney, most low vision patients are served by optometrists because of the relative scarcity of ophthalmologists inCanada. And while low vision clinics do a good job, they are few and far between.

Plotkin agrees. “There are not enough people inCanadawho do low vision assessments,” she says. “The work is very labour-intensive and it is not a money maker so people aren’t attracted to it. I spend an average of two hours on each patient appointment, which means I can see only four patients most days. You have to be willing to listen to patients while they talk about their problems and frustrations, and try to understand what they need. A lot of after-care, including report writing, is also involved.”

Another challenge is that very few people meet the standards set by the National Accreditation Council of Agencies Serving the Blind and Visually Impaired. The U.S.-based organization is the standard-setting and accrediting body that works with agencies and schools to provide services and programs to people who are blind.

TheUniversityofWaterloohas the only accredited low vision clinic inCanada. Located within the School of Optometry’s Optometry Clinic, Low Vision Services provide a range of vision rehabilitation services, including assessment, prescription, instruction and rehabilitation; information and referral for medical, social, educational, vocational and financial services; consultation with and referral to other specialty clinics within the School of Optometry and to community services; and basic and clinical research into various aspects of low vision.

Plotkin says that while the services of ophthalmologists are covered by the Ontario Health Insurance Plan (OHIP) there are simply too few of them to fill the need. That’s why her organization has been urging the government to cover optometrists’ services as well.

“At present, they fund low vision assistive devices but not optometrists’ services. It costs $125 for a low vision assessment and many people either don’t want to pay for it themselves or can’t afford to.”

Who Should You Call?

Here’s how to get in touch with low vision service providers:

InOntariocontact the Ministry of Health and Long-Term Care, Assistive Devices Program, for a list of authorizors in the vision category. Elsewhere, you can contact provincial associations of optometry and ophthalmology to find out who is doing low vision work in your area.

You can also contact agencies and services that work with people who have vision impairments, such as CNIB, MAB-Mackay and VIEWS for the Visually Impaired and Balance. Organizations that work with specific diseases include NOAH (National Organization For Albinism and Hypopigmentation) and AMD.org. Other resources include disability offices at universities and seniors’ centres.

By JoAnne Sommers

It is already being called an epidemic and with the rapid aging of Canada’s population, vision loss is sure to become a far greater concern in the near future. According to CNIB, someone in this country develops blindness or vision loss every 12 minutes. An estimated 836,000 Canadians — one in 38 of us — are currently self-identified as living with blindness or partial sight. In addition, more than three million other Canadians live with some form of age-related macular degeneration (AMD), diabetic retinopathy, glaucoma or cataracts. While they may not have experienced vision loss yet, if left untreated most of these people are at high risk.

After age 40, the number of cases of vision loss doubles approximately every decade, reflecting the fact that many causes of low vision are age-related. Statistics Canada says that by 2026 one out of every five Canadians will be a senior, which means the incidence of low vision will almost certainly rise dramatically.

Defining Low Vision
Almost everyone can manage their activities when their vision is between 20/30 and 20/60. If a person’s vision falls between 20/60 and 20/190 they are considered partially sighted or as having low vision. At 20/200 or worse, they may have some vision but are classified as « blind ». (Note: some people may be classified as blind if their field of vision is less than 20° across, even if their vision is better than 20/200.)

“Fully 90 per cent of those we serve still have some usable vision,” says Dawn Pickering, professional practice leader for Low Vision Services with CNIB in Toronto. “Only 10 per cent of our clients have no vision at all.”

The Causes of Low Vision

A variety of disorders that affect the eye and the visual system may cause low vision, including birth defects, injuries, inherited diseases and conditions such as AMD, glaucoma, diabetic retinopathy, cataracts, refractive error and optic nerve damage.

The most common cause of vision loss is AMD and age is its greatest risk factor. While it may occur during middle age, studies show that mature adults (people aged 60+) are clearly at greater risk than other age groups. A study by the U.S. National Institutes of Health (NIH) found that people in middle age have about a two per cent risk of getting AMD; that figure increased to nearly 30 per cent in those over age 75. An estimated one million Canadians have some form of AMD.

Glaucoma is the second most common cause of vision loss among Canadian seniors. The onset of glaucoma generally occurs later in life and people over 60 are six times more likely to get it than the younger population, according to the U.S. Glaucoma Research Foundation.

Diabetic retinopathy, which affects 500,000 Canadians, is the leading cause of vision loss in those under 50. Nearly all Canadians with Type I diabetes and 60 per cent of those with Type 2 develop some form of diabetic retinopathy during the first 20 years they have the disease.

More than 2.5 million Canadians have cataracts, which, fortunately, can be surgically removed and vision restored.

The High Cost of Low Vision
Low vision has a tremendous impact on quality of life: those who suffer from it sometimes lose their ability to drive, read, enjoy leisure, recreational and social activities, and even distinguish different colours. Studies have suggested that many people will become clinically depressed after a diagnosis and that those with vision loss are often socially isolated.

Low vision also exacts an enormous financial toll. A 2009 study by CNIB and the Canadian Ophthalmological Society called “The Cost of Vision Loss” found that it has the highest direct health costs of any disease category in the country — greater than diabetes, all cancers or cardiovascular disease. Vision loss costs Canadians $15.8 billion every year, a staggering $4.4 billion of which comes from lost productivity due to underemployment and unemployment. Everyone bears these costs: taxpayers (through federal and provincial/territorial governments), employers, individuals with vision loss, their families and friends.

One major contributor to the lost productivity cost is the very low employment rate among Canadians who are blind or have vision loss — 32 per cent. The CNIB study notes that this is much lower than the employment rate for Canadians with disabilities in general. Although most Canadians with vision loss are well educated, many of them face numerous barriers to employment, particularly attitudinal ones. A diagnosis of vision loss as an adult can also have a devastating impact on an existing career.

Low Vision Services
While little can be done to restore the lost sight of someone with low vision, many services are available to assist them. The first step, says Ryan Heeney, is a proper diagnosis. “Anyone who has low vision should have a comprehensive eye examination by an ophthalmologist,” says Heeney, national sales manager for Canada with Eschenbach Optik ofAmerica.

Once the cause is identified, the ophthalmologist may make a referral to other low-vision and rehabilitation specialists, such as CNIB. CNIB’s vision support services are the most comprehensive inCanada, ranging from low vision assessments and indoor and outdoor travel training, to training in the use of adaptive devices for computers and providing access to a full range of specialized library services, all at no charge.

CNIB has 60 low vision specialists across the country who provide functional assessments of visual abilities designed to identify the individual’s needs and goals, and make referrals to appropriate resources – either within CNIB or with community agencies.

“We get to know them, determine which services are best suited to them and develop a rehabilitation plan designed to meet their needs,” saysPickering.

CNIB provides life skills training to help manage the essentials of daily living, with an emphasis on maintaining independence – from safe and effective methods of cooking and doing household tasks such as laundry, to banking, writing and personal care.

“People with low vision are able to live with much greater independence than in the past, thanks to improved medical treatment and major technological advances,” she says.

Those advances include desktop, handheld and portable magnifiers, digital book players, screen magnifiers and talking GPS systems.

Technology has come a long way in its ability to assist the visually impaired, agrees Ken Patterson, Calgary-basedWestern Canada sales representative for Human Ware, which manufactures assistive technologies for those with visual and learning disabilities.

“The field is changing quickly,” says Patterson. “In the past we only had desktop devices but today there are many more portable devices available in all shapes and sizes.”

It’s important to remember that no single solution will meet every need, he says. “The only way to find out whether something works is to use it and see if it allows you to do what you want it to do. Everyone sees differently and you have to try things out before you can determine their suitability.”