CNIB and Vision Loss

CNIB and Vision Loss

Services in Canada:

An Opportunity

to Collaborate

CNIB and Vision Loss Servicesin Canada

What CNIB Does: One Person’s Experience

“I first noticed a change in my vision in the fall of 2000. An initial diagnosis of dry AMD (age-related macular degeneration) was followed by a progression to the wet form of the disease a few years later. I didn’t know how to deal with what was happening, I was frightened and confused. …When I was referred for a low vision assessment at CNIB, I discovered a source of practical information for people with vision loss. I had thought that CNIB simply dealt with blind people and had no services to offer me. While optometrists and ophthalmologists provide the medical side of treatment, it is CNIB that provides the human services to help people live with the disease.”

CNIB’s Role

CNIB is a nationwide, community-based, registered charity committed to research, public education and vision health for all Canadians. CNIB provides the services and support necessary for people to enjoy a good quality of life while living with vision loss.

CNIB brings almost a century of experience, an operating budget of 60 million dollars, and a service delivery infrastructure that includes over 1,100 employees and 10,000 volunteers in offices all across Canada to our delivery of vision loss services.

Outside of Quebec, CNIB provides the majority of low vision rehabilitation services in Canada. These services are funded for the most part by donations from a variety of individuals, organizations and corporations.

The Issue

CNIB’s capacity to deliver vision loss services quite literally depends on the success of local bingos, car raffles and individual generosity. Provincial government support of these services ranges from five per cent to 35 per cent depending upon the province.

In Canada, it is a cruel irony that if one develops cataracts, a disease occurring in the front of the eye, a sophisticated sequence of referral and treatment is activated and funded by health care dollars to support and treat the cataract patient.

If, on the other hand, this same person develops chronic vision loss as a result of a common eye disease occurring in the retina or back of the eye – dry age-related macular degeneration – s/he will be advised to seek visionrehabilitation services from a charity: CNIB.

The roots of this situation are historical and CNIB must shoulder some

responsibility for not alerting governments sooner to our growing inability to meet demands for low vision rehabilitation services.

While the situation is reaching a critical point, CNIB is confident that current demands[1]and the predictable increase in demand for vision rehabilitation service that will occur as Canada’s population ages[2]can be met. The solution lies in developing collaborative partnerships between CNIB’s existing infrastructure and governments at all levels.

The Opportunity for Collaboration

CNIB believes the Canadian health care system will achieve significant savings in future health care spending by acting now. CNIB implores governments to take the following actions:

Invest health care dollars in vision rehabilitation support services toeffectively meet current and future demands.
Support an affordable and portable vision loss assistive devicesprogram.
Integrate vision health/prevention of vision loss into federal andprovincial health promotion strategies.
Improve access to vision health/vision loss services by encouragingand supporting vision sector partnerships.

There are three reasons for governments to act now:

Vision loss is common.
Vision loss can be prevented.
Vision loss can be rehabilitated.

Vision loss rehabilitation service delivery is one part of a larger continuum of vision health/vision loss care. CNIB services can mitigate the negative impact of vision loss on individuals, but we acknowledge that these services occur within a larger vision health/vision loss context ranging from prevention, through to diagnosis, treatment and, in the case of chronic vision loss, rehabilitation.

CNIB is committed to working in collaboration with other vision health

providers. We are engaged, for example, in nationwide collaborative

partnerships with ophthalmologists, optometrists, family physicians, opticians and other service providers.

CNIB was a founding member of the National Coalition for Vision Health and is actively working with this group to develop a national framework and strategy regarding vision health and vision loss services for Canada.

The question is: How can CNIB more effectively collaborate with governments to deliver effective vision rehabilitation services to Canadians? We would welcome an opportunity to discuss this question in more detail.

Vision Loss is Common

Currently, one in eight Canadians can expect to live with significant vision loss after the age of 75.

Currently 108,000 Canadians are blind, and another 278,000 areexperiencing significant vision loss despite proper eyeglasses.2

600,000 Canadians self-report severe vision loss in the 2001 Participation and Activity Limitation Survey (PALS, Statistics Canada).

The most prevalent condition seen in low vision clinics is age-relatedmacular degeneration (AMD). In 2006, AMD clients accounted for52 per cent of new CNIB clients.

Glaucoma and cataracts are the next most common low vision presentations. Almost 250,000 Canadians have glaucoma.4

50 per cent of people with glaucoma are unaware that they have it and without an eye examination could experience irreparable and generally unnecessary vision loss.5

Cataract surgery is the most common surgical procedure performed in Canada.6

An increase in diabetic retinopathy, a highly treatable complication ofdiabetes, is the fourth most common cause of vision loss in Canada. Up to 25 per cent of people currently diagnosed with Type 1 diabetes could develop severe vision loss from diabetes in the next 20 years.7

1 Cost of Blindness symposium. Clear Vision document. 2004. Page 1.

2 Buhrmann et al. Foundation for a Canadian Vision Health Strategy. 2007. Page 5.

3 Participation and Activity Limitation Survey. Statistics Canada. 2001.

4 Buhrmann et al. Page 17.

5 Buhrmann et al. Page 17.

6 Buhrmann et al. Page 19.

7 Buhrmann et al. Page 15.

Leading Causes of Vision Lossand Blindness

Age-related macular degeneration (AMD): Most common cause of vision loss in the Western world. At present, more than 64,000 Canadians are blind as a result of this disease.1

Cataracts: Most common surgical procedure performed in Canada. It is the leading cause of blindness in long-term care facilities.2

Diabetic retinopathy: Coincides with the recent dramatic increase in diabetes. Rates of diabetes among Aboriginal peoples in Canada are three to five times higher than in the general population.3

Glaucoma: Almost 250,000 Canadians are affected with this disease and yet 50 per cent of patients are unaware that they have it.4

Note: Individuals are at higher risk of developing age-related macular

degeneration if they have a family history of eye disease, light-coloured eyes and skin, are diabetic, overweight or over age 50. People who smoke are three to four times more likely to develop AMD, which is the number one cause of significant vision loss in people over 50 in Canada.

1 Buhrmann et al. Foundation for a Canadian Vision Health Strategy. 2007. Page 13.

2 Buhrmann et al. Page 25.

3 Health Canada, Diabetes Among Aboriginal (First Nations, Inuit and Métis) People in Canada: The Evidence. 2001. Data source: Bobet, 1997; First Nations and Inuit Regional Health Survey National Steering Committee, 1999

4 Buhrmann et al. Page 17.

Common Secondary Complications

of Vision Loss When Left Untreated

Three times the risk of clinical depression compared to the generalpopulation.1

Injuries and falls. The Framingham Study, which tracked a population of 2,633 people in Framingham, Massachusetts, reports that “Visionimpairment is responsible for 18 per cent of hip fractures by older Americans at a cost of 2.2 billion dollars each year” (2005 dollars).2 3 A2004 report from Eye Research Australia confirms that “there are well established correlations between visual impairment and higher risk of falls(increased two times) and hip fractures (increased four to eight times).” 4

Premature institutionalization in long-term care homes; one study reportson average three years earlier than the general population.5 From a CNIBemployee: “One lady commented that she had begun preparations for long term care, feeling that as a result of her vision loss she would soon lose herindependence. She said that was two years ago and she no longer feels thatway. She added, ‘A visit to CNIB and talking with the counselor restored myhope.’”

Poverty. 48 per cent of adults who participated in a 2005 CNIB studyreported annual incomes of $20,000 or less regardless of marital or familystatus; 49 per cent reported chronic long-term unemployment; and 26 percent reported unmet needs for vision rehabilitation services.6

1 Quality of Life in Age-related Macular Degeneration. London, 2006.

2 Jutai J et al. Vision Rehabilitation Evidence-Based Review. Chapter 1: “Terminology, Demography, and

Epidemiology of Low Vision.” 2005. Page 8.

3 Felson DT, Anderson JJ, Hannan MT et al., Impaired vision and hip fracture. The Framingham Study.

Journal of the American Geriatrics Society, 1989;37:495–500.

4 Clear Insight - Overview. Eye Research Australia, 2004. Page 9.

5 Clear Insight - Page 9.

6 Simson H, Gold D, Zuvela B. An Unequal Playing Field: The Needs of People Who Are Blind or Visually

Impaired and Living in Canada. CNIB, 2005. Page 8.

Vision Loss Complications Can Be

Reduced By Vision Support

Services

“I am a Children’s Aid Society caseworker. One of my youngest children has been fortunate enough to have the assistance of a CNIB specialist. There are certainly the direct payoffs: customized programs and equipment to ameliorate her vision loss. But it may surprise you to know that there are other important and far-reaching benefits as well. As a result of your intervention, the child’s caregivers have gradually developed a new way of looking at her needs and future. Rather than viewing her as someone with deficits, the new view is of someone with possibilities and options.”

CNIB Services

Low Vision Services: Provides functional assessments of visual abilities, information and training in the use of low vision devices such as magnifiers, and instruction on how best to maximize residual vision.

Indoor and Outdoor Travel: Provides instruction on how to move safelyaround in the home, or travelling outside.

Independent Living: 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.

Support Services: Provides information and advocacy support for resources available from CNIB, as well as resources focusing on social issues such as concessions, housing, finances and leisure pursuits, available from partner community resources.

Consumer Products Support: Provides a unique retail experience in asupportive and interactive environment that allows people with vision loss to become familiar with devices prior to purchase.

CNIB Organizational Overview

CNIB is a nationwide, community-based, registered charity committed toresearch, public education and vision health for all Canadians. CNIB providesthe services and support necessary for people to enjoy a good quality of lifewhile living with vision loss.

Founded in 1918, CNIB is Canada's principal vision health service organization. Active in every region of the country, CNIB staff and volunteers work in offices and often travel to provide support to people in their homes and in rural communities. Through CNIB, Canadians have access to rehabilitationcounselling and training, innovative consumer products, peer support and one of the world's largest libraries for people with print disabilities.

At CNIB we focus on abilities and independence; we understand that there can be good quality of life for any of us experiencing vision loss, and there arepreventive steps we can all take to maintain vision health.

CNIB is on hand for anyone searching for vision health information, as wellas the services and support necessary to help overcome the practical andemotional hurdles of vision loss.

CNIB is unique within the Canadian health sector in that it is the onlyprovider of rehabilitative services in the health care system for vision-relatedissues, except in Quebec where these services are part of theprovincial framework of coverage.

CNIB works in partnership with the medical and paramedical communities,serving as the referral body for the delivery of unique vision supportprograms.

CNIB provides specialized services for people of all ages, including supportand training on independent living skills, assessment and training on theuse of low vision aids to compensate for vision loss, safe and independentmobility both within and outside the home, access to a wide variety ofconsumer products and access to one of the largest lending libraries ofbooks in audio, braille or e-text.

CNIB challenges conventional attitudes pertaining to vision loss, delivering a progressive message about ability, not disability.

CNIB Research

CNIB supports and oversees research to advance knowledge in the field ofvision health. Our research funding supports projects that focus on ways tocure, treat and prevent eye disease, and improve the quality of life for people living with vision loss.

At CNIB we also carry out our own research projects, focused on topics

important to our mission. Topics include needs assessments, employment,quality of life issues, rehabilitation outcomes and social policy.

Funding

Through the CNIB Grants and Fellowships Program, we fund both new and experienced researchers in their investigations in the fields of vision health and vision rehabilitation. Funding applications are peer-reviewed by scientists who are experts in vision health.

We support education through fellowships awarded annually for post-graduate training in ophthalmic and optometric subspecialties.

For a comprehensive list of our granting opportunities, please visit us online at. Most funding applications have a deadline of December 1 ofeach year.

Past Projects

Our in-house social research projects have helped us to better understand the needs of people with vision loss; to learn about social and health policy gapsrelating to the timely diagnosis, treatment and prevention of eye conditions;and to build our knowledge in order to improve service and influence policy.

Job Success: Examined factors that enable people living with vision loss tofind gainful employment.

Youth Study: A comprehensive study of the lifestyles of Canadian youth livingwith vision loss, focusing on social lives, leisure activities, employment andeducation.

Nationwide Needs Study: Also known as An Unequal Playing Field, this far reaching survey looked closely at demographics of Canadians living with vision loss, and the quality-of-life issues they face.

Current Projects

Age-Related Vision Loss and the Vision Health Guide: This study is aimed

ultimately at providing seniors with the best possible tools and information tomanage their own vision health. A guide to vision health and the creation of anationwide network of consumers and professionals are the outcomes.

Physical Activity for Youth Living with Vision Loss: This project explores

the physical activity levels of youth with vision loss, compared to the generalpopulation, and the barriers to physical activity that people with vision lossmay perceive and experience.

Clear Print Initiative: Projects on print legibility include the Clear Print

Evidence-Based Review, typeface font testing for people with different eyeconditions and the GO Transit studies on best typeface font for signage.

CNIB National Revenue and

Expenses

In the fiscal year 2006/07, government support ranged from five to 35 per cent of total revenue depending upon province. For the organization as a whole, governments provided just 28 per cent of CNIB’s total revenue. Support from the public – mainly through private charitable donations –remains our foremost source of funding. For 2006, public support amounted to 47 per cent of CNIB’s total national revenue.

[1]In 2005, CNIB served 105,000 of the 600,000 Canadians who self-identified as having significant vision loss through the 2001 post census survey, Participation and Activity Limitations Survey. Statistics Canada, 2001.

[2]One in eight persons over the age of 75 will experience severe vision loss.