An Unequal Playing Field: Report on the Needs of People Who Are Blind or Visually Impaired Living in Canada

Release Date: November 2, 2005

Acknowledgements
This research was conducted by The CNIB National Research Unit. The project coordinator was Helen Simson, M.A., and the project manager was Deborah Gold, Ph.D. The report was authored by Helen Simson, Deborah Gold, and Biljana Zuvela.

This study has been funded by a generous contribution from the Office for Disability Issues, Social Development Canada, and by The Canadian National Institute for the Blind. The study has been guided by an 11-member National Advisory Committee (see Appendix B) that comprises consumers and providers. Many staff from The CNIB and other organizations provided advice, feedback, and suggestions. Most importantly, many consumers who live with vision impairment and many service providers contributed their time to the surveys, allowing for successful undertaking of this study. The findings of the study are strongly informed by their voices. We want to acknowledge those consumers and providers who gave us access to the details of their personal and professional lives.

Key Findings Highlights

Adult consumers

• 352 adult consumers living with vision loss took part in the study.

• 57% of adult participants were working age (21–64) and 43% were seniors (65+).

• 48% of all adult consumers reported gross annual incomes of $20,000 or less, regardless of marital or family status.

• 25% of consumers aged 21 to 64 reported that they are employed, and 49% reported that they do not have jobs.

• About 19.5% of working-age consumers had completed one or more university degrees, 17.8% had successfully completed high school, and 14% had achieved a community college diploma.

• The most common barrier encountered in the employment search involved employer attitudes — 27% of working-age participants reported that employers do not see the blind applicant’s potential, and another 26% indicated that employers are unwilling to hire someone with a vision impairment.

• The largest group of working-age consumers (26%) reported having received no employment supports.

• 74% of currently employed participants reported that they had received job accommodations, and the largest number of job accommodations was funded by employers (81%).

• About 22% of currently employed participants found their jobs through connections and word of mouth.

• 44% of all adult participants reported that they get out of the house on a daily basis — 27% of seniors and 57% of working-age participants.

• 55% of all adult participants reported that they do not use public transportation.

• 52% of the participants were not involved in volunteer work.

• Orientation-and-mobility skills training (46%), training in the use of low-vision devices (40%), and training in skills of daily living (38%) were the most frequently cited vision rehabilitation services received by participants.

• Almost half of participants (41%) reported that their needs for service were not being met.

• The most frequently cited unmet need was transportation (26%), followed by training in adaptive computer equipment, and acquiring adaptive equipment.

• The greatest barriers to meeting participants’ service needs were lack of knowledge about how to find the services to meet their needs (24%), expense (20%), and distance from the service (13%).

• The most frequently reported impacts of unmet needs on daily lives were reduced capacity to do things participants want to do (44%) and feelings of isolation (37%).

• Only 13% of all participants said they participate in advocacy activities.

• 85% of all participants reported that they use technical aids.

• 47% of participants who use technical aids reported that they taught themselves how to use them, and 41% received training from The CNIB.

• The percentage of participants who reported that they feel they need services they are not receiving was the highest in Ontario (48%), followed by Manitoba/Saskatchewan (46%), and Alberta (44%).

Parents of children with vision loss

• 54 parents of children with vision impairments, ages birth to seventeen completed the survey.

• Asked about their own primary needs for support, 50% of parents reported needing information about their child’s needs, 35% respite care, 33% peer support, 32% financial assistance, 32% parenting skills, and 28% advocacy.

• One-third of parents reported that their child had unmet needs.

• The most frequently reported reason for unmet needs was local unavailability of required services (33%), followed by long waiting lists (20%).

• Close to one-third of parents stated that their children never received birthday or other party invitations, 77% that their children do not belong to clubs, and 74% that their child does not play sports.

Medical service providers

• 94% of ophthalmologists and 96% of optometrists indicated support with maintaining independence in everyday domestic activities as the most significant need of their patients.

• 65% of ophthalmologists and 54% of optometrists indicated acquisition of low-vision aids as the most significant need of their patients.

Rehabilitation and education service providers

• Asked about their perceptions of the primary needs of their clients, 84% of participants indicated adaptation to vision loss (learning how to maintain independence), 79% emotional adjustment to vision loss, 67% technical aids, and 67% training in the use of technical devices.

• A lack of financial resources, shortage of staff, limitations in types of services offered, large geographical catchment areas requiring a great deal of travel time, and large caseload were reported as factors that constrain service provision to the clients.

Executive Summary of Key Findings

An Unequal Playing Field: Report on the Needs of People Who Are Blind or Visually Impaired Living in Canada examined the needs of people in Canada who are living with vision loss. The study was supported by a contribution from the Office for Disability Issues, Social Development Canada, and The Canadian National Institute for the Blind (CNIB).

The primary objective of the study was to develop a sound knowledge base about the needs of Canadians who are blind or visually impaired. This knowledge base is expected to inform service providers (within and outside of The CNIB), social policy-makers, and the public about the met and unmet needs of people with vision impairments living in our communities.

A comprehensive national review of needs was done through focus groups and submitted briefs in 1975 (Greenland 1976). Another comprehensive consumer needs study was conducted in the province of Ontario from 1994-95 (CNIB 1995). However, there has not been a large scale national quantitative study of the needs of Canadians at any time. In fact a review of literature did not reveal a comparable study worldwide, either in terms of the breadth and depth of information, or in terms of the number of participants.

This report examined the findings in light of the broad areas of access (to supports and services), inclusion (in education, employment, and community life), and participation (in civil society and its mechanisms for social advocacy. The Government of Canada outlines key outcomes in these areas. These outcome areas are disability supports, skills development and learning, employment, income, capacity of the disability community, and health and well-being (Government of Canada 2004). Our report utilizes these outcome areas to discuss our results.

Methods

After conducting a targeted literature review, several focus groups and preliminary information-gathering interviews, four surveys were designed to collect the necessary quantitative and qualitative data to answer our questions about the lives and needs of people. We collected information from adult consumers (352), parents of blind children (54), ophthalmologists and optometrists (55), rehabilitation agency service providers, and teachers of students with visual impairments (136).

The surveys for adult consumers and parents were comprehensive, collecting demographic information and inquiring about multiple dimensions of daily life such as health, education, employment, family finances, social/recreational life, services received, disability supports, barriers to supports and services, and unmet needs. The surveys for the two service provider groups were shorter, eliciting participants’ understanding of the needs of their clients/patients, the services that are available to support those needs, unserviced or under-serviced needs, and perceived barriers to gaining access to supports and services.

Recruitment of participants was achieved through random selection from the CNIB client database , through voluntary participation, and by randomly selecting names from the membership lists of professional organizations (for the ophthalmologists, optometrists, and vision rehabilitation practitioners).
Once the data were collected and analyzed, a preliminary overview of the key findings was disseminated to participants in 12 community consultations held from coast to coast in the summer of 2005, and the results of these consultations were incorporated into the interpretation and discussion of the findings. The final report contains a list of all communities and organizations that participated in the consultations.

Key findings

Income
Nineteen per cent (19%) of all adult consumers (aged 21–91) in the study reported gross annual incomes of $10,000 or less, and more than one-quarter (28%) of the working-age (aged 21–64) participants reported gross annual incomes of $10,000 or less. This included participants with and without dependents. About half (48%) of all adult consumer participants reported gross annual incomes of $20,000 or less, regardless of marital or family status. Seniors (aged 65–91) are not faring much better, as 46% have gross annual incomes of $20,000 or less. The low-income cut-off in Canada for a single person is $14,000–$20,337 and for a family of three is $21,426–$31,126. The most frequently reported source of income was some type of government income support program.

Education
We asked about the highest level of education attained. About 13% of working-age consumers had attained an undergraduate university degree, while almost 6% had obtained a Master’s degree, and 0.5% had a doctoral level degree, thus 19.5% in total had completed one or more university degrees. Another 17.8% had successfully completed high school, and 14% had achieved a community college diploma. The Government of Canada reports that 25% of the general population of adults without disabilities have completed a university degree (Government of Canada 2002).

Employment
In general, adult consumer participants reported low levels of employment. For example, only 25% of consumers aged 21–64 reported that they are employed, and 49% reported that they do not have jobs. Most of these people had been out of the work force for years. The Government of Canada (2002) reports that 51% of people with disabilities (aged 25–54) have employment, and 82% of the general population (aged 25–54) is working.

What does this mean?
Comparisons to the Government of Canada (2002) report entitled Disability in Canada, 2001, which is a summary analysis of the Participation and Activity Limitations Survey (PALS) 2001 data, reveal that working-age people who are blind or visually impaired are not substantially under-educated compared to the general population of people with disabilities, yet only 25% report being employed versus 51% of people with disabilities in general. Even though the age grouping is different, enough of a comparison can be made to raise the question about whether a good education is enough to enable a blind or visually impaired person to find a job. Clearly, educational attainment is important, but type of disability appears to make a difference in becoming employed, and much needs to be done in the arenas of employer education and employment supports in order to change this picture.

Job search barriers
The most common barrier encountered in the employment search involved employer attitudes. Twenty-seven per cent (27%) of working-age participants reported that employers do not see the blind applicant’s potential, and another 26% reported that employers are simply unwilling to hire someone with a vision impairment.

Employment supports
In terms of actually having received employment supports (such as job search information, how to write an application, time management skills, and self-advocacy skills), the largest group of working-age consumers (26%) reported having received no supports. The picture was more positive among those with jobs. Specifically, when the employed participants were asked whether they had received job accommodations, the majority (74%) answered affirmatively. The largest percentage of job accommodations were funded by employers (81%); 16% of those receiving job accommodations funded them themselves. The most common means by which employed participants found their jobs was through connections and word of mouth (21.6% of those who were employed). The second most common means was through a family connection or friend (14% of those who were employed).

What does this mean?
These findings have several implications. It appears that most employed participants were connected with their jobs through somebody they knew, not through an employment support service. Further, it appears that many of their employers are prepared to provide accommodations and supports on the job. Therefore, employment supports provided to unemployed people may not be the right supports. It seems that people with vision impairments would benefit if they learned how to build their social networks. Of course, networking is a form of social inclusion, and we theorize that the more marginalized or excluded the person with a vision impairment, the more likely that person is to be unemployed, and vice versa. We wonder also if employers who do not hire blind people can be made more aware of their own ability to provide accommodations so that a skilled blind person can be more easily hired.

Social integration
Almost half (44%) of all adult participants reported that they get out of the house on a daily basis, but this is less frequent for seniors (27%, compared to 57% of working-age participants). Seniors were also more likely to report that they rarely get out of the house: 17% of seniors, compared to 7% of working-age participants reported this. Of the 36 people who reported they rarely go out, most said it was because they did not have someone to accompany them. Only 10% of all adult participants reported that they spent no time socializing. We found this to be a very positive finding, especially when examined together with the finding that 40% of participants spent 1 to 5 hours socializing per week. Also, almost half of adult participants reported that they do regular social or recreational activities 2 to 3 times per week.

Over half of all the adult participants (55%) reported that they do not use public transportation, and the most frequent reason cited was “I don’t need to use it.” However, when we asked about what would be required in order for participants to do the things they want to do but feel they cannot do, 13% said transportation. Only 9.3% of all adult participants (14% of working-age participants) expressed a feeling of independence by stating that they can do everything they want to do. However, 33% of working-age and 28% of all participants indicated they can do most things they want to do.

Volunteering
About half (52%) of those who reported on this question said they are not volunteering. In answer to the question about why people are doing volunteer work, participants could check as many answers as they wished. Of all responses, 82.3% stated that they wished to contribute to the community, 40.5% reported that they wished to meet new people, 35.4% wanted to have social opportunities, and 25.3% wished to gain skills and/or contacts for employment.

Vision rehabilitation services received
Orientation-and-mobility skills training (46%), training in the use of low-vision devices (40%), and training in skills of daily living (38%) were the most frequently cited services received by participants. Seniors did not receive mobility services as frequently as working-age participants. Seniors received training in the use of low-vision devices more frequently than working-age consumers. The majority (81%) of these services were received without charge to the participants. The majority of adult participants who received vision rehabilitation services felt they met their needs very well (44%) or adequately (38%). A referral from an ophthalmologist was the most frequently cited route to vision rehabilitation services (47% of those who received services). When asked if participants encountered any difficulties in their attempts to find or access services, the most frequently cited problems were difficulty finding information about them (15%), expense (14%), and difficulty getting to them (14%).

Unmet needs for service
While 68% of seniors and 32% of working-age adults reported that their needs for service were being met (59% of all), almost half of the participants (41%) reported unmet needs. The most frequently cited unmet need was transportation (26%). Other unmet needs included adaptive computer equipment (21% for working-age adults, 17% overall), training in the use of adaptive computer equipment (16%), low-vision devices (16%), peer support (15%), employment services (12%), and training in the use of public transportation (9%). Echoing responses on finding vision rehabilitation services, participants said the greatest barrier to meeting their needs was lack of knowledge about how to find the services to meet their needs (24% of all adults, 27% of seniors). Other barriers included expense (20%) and distance from the service (13%).

Impact of unmet needs
The most frequently reported impacts of unmet needs on daily lives were reduced capacity to do things participants want to do (44%) and feelings of isolation (37%).

Service providers’ perceptions
Provider participants’ understandings of clients’/patients’ needs were congruent with those expressed by the consumer participants, and in addition they recognized many of the same barriers to services as did the consumers. The providers also identified constraints on their capacity, both professionally and organizationally, to support consumers’ needs.

What does this mean?
While just about half of the participants have received vision rehabilitation services, and those who have received them are satisfied, a large number of participants perceive themselves to be in need of service they are not getting. In some part, this may be due to the fact that many of the participants are poor and do not have the funds or social support that would lead to knowledge about where to access service. Furthermore, social isolation, particularly for those living in rural or remote locations, may be connected to a lack of knowledge about where to find service and is definitely connected to a lack of access. Without access to the services and supports necessary to learn independence (e.g., orientation-and-mobility skills) or to gain access to important information (e.g., low-vision devices such as magnifiers or newspapers available by telephone), many people who are blind are socially excluded and kept from participation in the lives of their communities.

Advocacy
While 50% of working-age adults and 29% of seniors were aware of consumer advocacy organizations, only 13% of all participants said they participate in advocacy activities.

What does this mean?
One implication of this finding is the need for consumer advocate groups to develop awareness campaigns and potentially to focus on expanding their membership in order to strengthen their own capacities. In terms of seniors’ groups, we have concluded that there is no specific group in Canada that represents the needs of seniors experiencing vision loss, and such a group might be of great benefit to elderly people going through this life-changing experience. Linked to other evidence from this study, we suggest that it is difficult to become connected to other consumers when people are limited in income, in employment and opportunities, in access to transportation, and in socially inclusive activity.

Use of assistive devices
A significant portion of our survey for adults was devoted to learning about the use of assistive devices by consumers. Overall, 85% stated that they use technical aids such as tape recorders (56%), handheld magnifiers (52%), screen readers (36% for working-age adults, 5% for seniors), closed circuit televisions (24% for seniors, 15% for working-age adults), digital book player (29% for working-age adults, 8% for seniors), and many others. The majority of participants stated they use them at home (95%), while 14% stated they use them at work. About 11% use them while shopping, volunteering, or travelling.

Unused devices were common. Nearly 22% of participants stated that they have been prescribed a device that they have not acquired. About half (55%) of those who said this gave the expense as the main barrier. Other reasons included not finding them useful or not knowing where to get them.
In terms of training in the use of devices, 47% of the 301 participants who use them stated that they taught themselves how to use them, and 41% stated they received training from The CNIB. About 11% indicated that a supplier or a vendor provided training. Overall, participants who received any degree of training in the use of assistive devices felt that the training had been effective.

What does this mean?
It is quite unacceptable to think that almost half of the participants who received assistive devices have had to teach themselves how to use them. A recent study has shown that many of these devices, such as magnifiers and CCTVs, require several training sessions in order to be most effective in uptake by consumers (Scanlan and Cuddeford 2004). Our own findings also imply that cost is a barrier to some people in some locations. Only four provinces have technical aids and devices funding programs. Each of these has different requirements and regulations to follow, and thus each is different.

Meanwhile, in the six other provinces and three territories, people requiring assistive devices must rely on their own funds or charity to gain them. Again, access to social inclusion and civil participation is bound to be constrained by a lack of access to assistive devices, which are required in order to read. Exclusion from information is an insidious form of social exclusion, perhaps the least obvious to the general public and those who are focused on the built environment but nevertheless of prime importance.
Without access to information, those who are blind or visually impaired are fundamentally left out of key social processes (such as the written news media) and communities of connection through the written word (such as electronic media such as e-mail and the Internet). Functioning in daily life is also affected by the lack of access to assistive devices. People with low vision can independently shop, do their banking, and order food in a restaurant if they have access to the portable magnification devices available to assist them with these activities.

Regional differences
Our full report provides information on differences between different jurisdictions in the country. It is interesting to note that the percentage of participants who reported that they feel they need services they are not receiving was the highest in Ontario (48%), followed by Manitoba/Saskatchewan (46%), and Alberta (44%). This is interesting because Ontario, Saskatchewan, and Alberta are three of the four provinces in the country that have funded assistive devices programs. We suggest further sociological or psychological research would be required to examine the implications of this finding more closely, especially since we did not conduct correlational analyses on this data.

Parents’ surveys
Only 54 surveys were received from parents. We wanted to get a sense of the situation of children and the parents’ perspectives in order to round out the data, although the lives of youth had been comprehensively studied in a previous project (CNIB 2004). Our findings indicated that the children ranged in age from 1 year to 17 years, and just over half of them were under age 10. About 61% of the children had at least one other disability in addition to their vision impairment. The reporting parents (most were mothers) were evenly split as to whether they felt that the responsibilities associated with raising their child with a vision impairment had prevented them from engaging in employment in the past.

Supports needed by parents
Parents reported needing information about their child’s needs (50%), respite care (35%), peer support (33%), financial assistance (32%), parenting skills support (32%), and advocacy (28%), as well as other supports. Parents reported that these needs were not fully met. In fact, only half of those needing parenting skills support had received it, and only one-third of those requiring advocacy help had received what they needed. In terms of their children, one-third of parents did report that their child had unmet needs. The most frequently reported reason for unmet needs was local unavailability of required services (33%), followed by long waiting lists (20%).

Social integration
Close to one-third of parents who answered the question about social activity participation stated their children never received birthday or other party invitations. Similarly, only 23% of children belonged to clubs, and 74% of parents said their child did not play sports. Only 22% of children had attended summer camp. Parents were fairly equally likely to answer that they felt either that their child had a satisfactory social life or that the child did not.

Medical service providers
While a great deal of information was collected from medical service providers regarding their practices and their patients, we focus here on their perceptions of the most significant need of their patients. The greatest majority of both ophthalmologists (94%) and optometrists (96%) indicated support with maintaining independence in everyday domestic activities as the most significant need. Acquisition of low-vision aids came second, with 65% of ophthalmologists and 54% of optometrists reporting this need.

Rehabilitation and education service providers
After collecting general demographic data about participants’ professional service, we asked them about their perceptions of the primary needs of their clients. The most frequently reported needs were adaptation to vision loss (learning how to maintain independence) (84%), followed by emotional adjustment to vision loss (79%), technical aids (67%), and training in the use of technical devices (67%).

What does this mean?
Most (119) of these professionals were employees of The CNIB in a number of capacities of service provision. Only a few were teachers of the visually impaired, due to the fact that we did not get the desired response rate on the survey to teachers. Thus, it is not surprising that the focus of the needs is oriented to both adults and rehabilitation services. However, it is interesting to see that the greatest needs noted by service providers echo the responses of adult participants in our study. Both those receiving service and those providing it see where the greatest service needs lie and want to close the gap between those needs and meeting them.

Factors that constrain service provision
We asked service providers an open-ended question about the factors that constrain service provision to their clients. We then grouped their responses, and they are listed here in descending order of response rate. This question was answered by 88 (65%) of participants. About 40% of those who answered this question stated that a lack of financial resources was the greatest constraint. Other constraints discussed were shortages of staff (39%), limitations in types of services offered (24%), large geographical catchment areas requiring a great deal of travel time (13%), and large caseloads (11%).

Conclusion: Implications of the Findings

Implication #1
For working-age adults, the key to income, independence, and inclusion is employment. Negative employer attitude was listed as a definite barrier to obtaining employment, reinforcing the finding that sufficient education is not enough. This was reinforced throughout our community consultations. Our findings about low levels of employment and income surprised nobody, and many said that income support programs are not adequate to replace employment income, and they may be an incentive to stay out of the work force. Across many consultations, people stated the need for public education to change attitudes about blindness, so that potential employers understand that a person who is blind requires an opportunity, some accommodation, in order to work. Several parents and teachers also emphasized that skills of children who are blind must be developed so that they are working from a young age towards the world of work.

Implication #2
Research is required to examine the link between education and employment as it relates to the situation of people who are blind. It appears that for blind people at least, the education level attained does not have the same impact on likelihood to be employed as it does for the general population or even for those with other types of disabilities. Moreover, we might theorize that the level of accommodations supplied in post-secondary education permits students who are blind to achieve higher levels of education than are necessary for many types of employment, keeping them out of the workplace, and making it less likely that they will have the necessary work experience required by many employers.

Furthermore, persons who are blind or visually impaired may need different pre-job supports than those they are currently receiving, and employers may need greater awareness of the abilities of people who are blind or visually impaired.

Implication #3
Our findings on social and recreational life indicate that people who are blind in Canada are, for the most part, able to spend some of their time with others. However, a comparative study is required as we suspect these people are still far more socially isolated than those with sight, especially given that 10% of adult participants told us they never leave their homes. Comparative study in gerontology is also required to compare the social lives of elder seniors with vision with those who have significant vision loss.

Implication #4
Our findings on vision rehabilitation services imply that many people would have an easier time learning about and gaining access to these services if they were integrated into the overall vision health system. Referrals could then be made more easily, and people might become reintegrated and socially included more quickly.

Extensive recommendations form a part of the full report and appear as the last section. We have made recommendations for future research, policy recommendations, and recommendations related to public awareness.

References

CNIB. 1995. CNIB Client Needs Study (Ontario). Unpublished report. Toronto: CNIB Ontario Division.

Government of Canada. 2002. Disability in Canada: A 2001 profile. Ottawa: Human Resources Development Canada. (Web site: www.hrsdc.gc.ca accessed October 8–17, 2005).

Government of Canada. 2004. Advancing the inclusion of persons with disabilities. Ottawa, Canada.

Greenland, C. 1976. Vision Canada: Unmet needs of blind Canadians. Toronto: Canadian National Institute for the Blind.