• 2.1 Examining the Costs of Blindness
• 2.2 Responses to the Research Challenges
• 2.3 Definitions Used
• 2.4 Research Methodology
• 2.5 Survey Data Analysis
• 2.6 Methodology Limitations
• 2.7 Report Structure

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This section discusses the methodology used to undertake the cost of blindness research. The section begins with a discussion of the challenges inherent in the research and how the research approach has sought to respond to these. The definitions used in the research are then discussed.

2.1 Examining the Costs of Blindness

It is recognised that the amount of functional sight does not always directly correlate with the degree of impairment a blind or vision impaired person experiences (Kelly, 1995). A range of social, psychological and physiological factors can affect how an individual reacts to the loss of sight (Kelly, 1995). Factors can include an individual's personality, degree of vision loss, cause of blindness, age at onset and societal influences (Hudson, 1994).

Reflecting the above, it is also recognised that the costs of blindness at a personal level can be diverse and highly individual (BCA, 2003; Chou, Misajon, Gallo & Keeffe, 2003). There are many variables which are likely to influence if, when and to what extent an individual may experience and recognise a cost as a cost of blindness. These can include: the timing of the onset of blindness or vision impairment; lifestyle prior to onset and the extent to which the previous lifestyle is restricted or limited; the amount of support available to a blind or vision impaired individual; and, the extent to which costs may be experienced or borne by those around them.

2.1.1 Life Stage and Timing

The timing of onset is likely to be a critical factor in the experience of the costs of blindness. The cost structure and impact of these costs is likely to differ by life stage and costs will almost certainly change over a lifetime. For example, becoming blind or vision impaired in the prime of one's working life is likely to impose significant financial, emotional and opportunity costs. Parents of a blind or vision impaired child are likely to incur substantive costs during the up-bringing of their child, with the distribution of the cost burden transferring more towards the individual as they age. If blindness or vision impairment occurs later in life, it may become increasingly difficult to distinguish the costs of blindness from other costs incurred by older aged persons generally. There is the additional likelihood of other disabilities, which causes further difficulty in teasing out respective costs. Vision impairment at an older age may also be perceived or experienced as resulting in fewer costs if changes in lifestyle are expected with age. Older age may bring lower aspirations and expectations, further impacting on the experience of both direct and opportunity costs.

The magnitude and impact of costs of blindness may also change over time. For example, with technological advances, a significant cost ten years ago may now be considerably reduced. However, technological advances may also bring new opportunity

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costs. A blind or vision impaired person who today remains computer illiterate is likely to face significant disadvantage and opportunity costs, for example reduced employment potential.

2.1.2 Level of Adaptation

The costs of blindness may also become less obvious to an individual as their adaptation to vision impairment increases. For example, an individual blind from birth is likely to have developed a higher level of adaptive functioning compared to an individual with more recent vision impairment. Given this, the individual blind from birth is likely to have become accustomed very early to many of the costs of blindness, probably making it more difficult for costs to be recognised.

2.1.3 Level of Aspiration

The extent to which a blind or vision impaired individual aspires to be independent or to achieve other goals may also be influential in the experience and recognition of the costs of blindness. If vision impairment impacts on an individual's ability to satisfy a goal, then the individual may rightly be defined as experiencing a cost of blindness.

For example, an individual striving to re-develop a level of independence after becoming vision impaired may experience different costs compared to another individual who accepts a lower level of independence. An individual may choose to become computer literate as a means of enhancing independence, incurring a range of costs in the process compared to an individual who may not pursue this goal. However, this decision may also result in opportunity costs for this person, for example reduced communication potential and reduced employment prospects. Furthermore, this decision may also result in a greater transfer of costs to others, for example a greater reliance on others for undertaking communication activities.

2.1.4 Separating Wants and Needs

The difficultly of separating 'wants' from 'needs' is a challenge when trying to measure the costs of blindness. Both vision impaired and fully sighted people have 'wants'; however, it may be incorrect to count these 'costs' in the current study. Central to distinguishing between the two is the concept of a cost being 'non-optional' (O'Neil, 2001). If, because of their vision impairment, the blind or vision impaired person has no option but to incur a cost in order to satisfy a need, this cost could rightly be determined a cost of blindness. Comparisons to fully sighted people may also be useful in determining what costs are 'non-optional'. If a cost is optional for a sighted person, but non-optional for a vision impaired person, then this cost could be defined as a cost of blindness.

2.1.5 Level of Support

The presence or absence of a sighted partner may also impact on both the experience and recognition of the costs of blindness. Adaptive functioning may be significantly

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developed around the role of the sighted partner, thus reducing the personal experience of costs for the vision impaired individual. Such a situation is also likely to represent a transfer of cost burdens to the sighted partner.

2.1.6 Geographical Location

While there is little available literature, the costs of blindness are also likely to be influenced by geographical location, in particular urban or rural location. Relative availability of, and access to, necessary services is likely to be influential in different cost experiences.

2.2 Responses to the Research Challenges

An incidence-based costing approach is likely to have been most appropriate for capturing the costs of blindness over time and how costs are likely to change over time. However, this approach requires a level of detail on epidemiology and the long-term course of eye diseases beyond the resources of the current study. The research has instead used prevalence based costing which estimates the costs of blindness in a given time interval. This approach does not explicitly account for when a person became blind or vision impaired or the stage of disease progression. It does, however, assume that in deriving costs from a representative sample of blind and vision impaired people the costs identified will accurately account for the distribution and range of costs experienced in the whole population of blind and vision impaired people. These costs have been annualised in the final analysis.

The report utilises mean or average costs to extrapolate the costs identified through the survey. More analysis could be undertaken to present the range of costs in order to acknowledge the individuality of costs experienced.

To further understand costs by life stage, the research examines costs by relevant demographic characteristics such as age, gender, and employment status. Difference in costs according to these demographic differences is reported and discussed where statistically significant differences occur. A full set of tables is also provided in the appendices for information according to demographic characteristics (age, sex, location, and whether blind or vision impaired). Focus group discussions were also arranged by life stage to enable more in-depth examination of similarities and differences in costs by life stage.

A number of strategies were used in the costs of blindness survey to counter likely differences in respondents' experience and recall of costs. Throughout the recruitment process, respondents were provided with definitions of possible costs of blindness, including the range and types of costs likely to exist. To enable preparation for the interview, each respondent was sent further information on the range and types of costs and was encouraged to consider costs they may be consciously or unconsciously

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experiencing. In particular, emphasis was placed on discussing costs as being non-optional.

2.3 Definitions Used

2.3.1 Blindness and Vision Impairment

The definitions of blindness and vision impairment used in the current study are the same as those used by the World Health Organisation (1997).

• Total blindness is defined as anything less than visual activity of 3/60 but not including 3/60.
• 'Low vision' is defined as anything less than 6/18 but not including 6/18.

Throughout the report, the terms 'blind' and 'vision impaired' are used to distinguish between individuals defined as having total blindness and those defined as having low vision.

2.3.2 Costs of Blindness

The individual costs of blindness are understood as those extra, non-optional costs incurred by blind or vision impaired persons because of their blindness or vision impairment. These costs are above and beyond those that would be encountered if the person did not have vision impairment.

The 'individual' for the purposes of the current study is defined as including not only the blind or vision impaired person, but also members of the blind or vision impaired person's family. The reasoning behind such a definition is to recognise the impact of blindness or vision impairment on the family unit, beyond the blind or vision impaired person.

The societal costs of blindness are defined as the costs to society to provide the services, treatment, equipment, benefits and other support required to mitigate the effects of vision impairment.

'Society' is defined as including both local and central government agencies, charitable and voluntary organisations and individual members of society outside of the blind or vision impaired person's family, and may include flatmates, friends, neighbours, workmates, employers, fellow students, shop assistants and members of the general public, and so on.

2.3.3 Individual Direct Costs

At the individual level, the costs of blindness impact on the vision impaired person and their family. For this reason, as discussed above, the study defines individual costs to also include the costs incurred by immediate family members.

The individual costs of blindness are broken into further categories as follows:

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Direct Costs - Type 1: Money and time costs incurred for medical treatment and mitigation of vision impairment and blindness. This includes specialist visits, medication, surgery, sensory aids, artificial eyes and other equipment. It also includes travel associated with medical appointments.

Direct Costs - Type 2: Money and time costs arising from impediments to undertaking routine daily activities. Extra costs of daily activity include all costs associated with travel and additional equipment and assistance with daily living.

2.3.4 Individual Opportunity Costs

Opportunity cost defines cost in terms of an opportunity forgone and the benefits that could be received from that opportunity, or the most valuable forgone alternative (Wikipedia, 2004). In relation to blindness and vision impairment, opportunity costs can include the extra time spent undertaking activities, for example, as well as the inability to undertake an activity immediately as desired, the planning, scheduling and marshalling of resources required to do something. Opportunity costs can also include things that are missed out on, things that are selectively excluded or not pursued, and the need to concentrate lifestyle and activities around areas of life that are achievable.

Individual opportunity costs of blindness are broken into further categories as follows:

Type 1 Opportunity Costs: The range of costs incurred by blind or vision impaired individuals and household members, because of the time involved in compulsory activities and/or caring for vision impaired people, to undertake discretionary daily activities. The direct effect is on time available, the consequent cost related to their quality of life.

Type 2 Opportunity Costs: The costs incurred by blind or vision impaired individuals and household members who are unable to participate in some routine activities because they do not have enough vision to do so. This will directly impact the vision impaired individual and quality of life of other household members.

Type 3 Opportunity Costs: The costs to blind or vision impaired individuals and household members from lower earning power than equivalent people who are not blind or vision impaired. The direct effect is less money to buy goods, services and participate in activities. The consequent effect is on the individual and household quality of life.

2.3.5 Societal Costs of Blindness

The societal costs of blindness are defined as the costs to society to provide the services, treatment, equipment, benefits and other support required to mitigate the effects of vision impairment. Societal costs also include the time inputs of volunteers and other agencies in providing services to the blind and vision impaired.

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Societal costs of blindness are broken into further categories as follows:

Direct - Type 1: Public funding and subsidies for medical and equipment costs associated with vision impairment. This includes funding by government and vision impairment agencies.

Direct - Type 2: Money and time costs associated with supporting blind and vision impaired people to undertake routine daily activities. This includes travel subsidies, employment benefits, funding of education and employment training, postal concessions and volunteer support.

Societal Opportunity Costs: While not examined in depth, societal opportunity costs include that which is lost to society as a result of blindness and vision impairment. This includes for example, talented blind people having to live in another country in order to fulfil employment potential, blind people not being able to fully contribute to society, and blind people not being more visible in the community. These costs can also include that which is lost because of public perceptions of blindness, for example, an employer's expectation about the level of performance possible from a vision impaired worker.

2.4 Research Methodology

The components of the research are:

1. Literature review (separate 'summary' and 'by document' reports available but not included here).

2. Review and analysis of available secondary data.

3. In-depth interview discussions with key informants.

4. Focus groups with RNZFB members.

5. Telephone survey of RNZFB members.

The study draws on secondary and primary data sources as well as both qualitative and quantitative research methodologies. Further description of method is provided below.

2.4.1 Review of the Research Literature

A review of the national and international literature on the costs of blindness was undertaken.

Key words, structured around the objectives of the study, were used to conduct literature searches through the following databases and other sources: JSTOR, EBSCO Host, Index New Zealand (INNZ) and Te Puna, Expanded Academic, Web of Science, Medline, Digital Dissertations and the RNZFB library resources.

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A broad range of relevant research reports and other documents were identified. Key findings from each study were reviewed, documented and then further compiled under key headings with particular relevance to the current study. Findings are reported in Section Three and as relevant, drawn on throughout the report. Separate Literature Review documents are available; both an overall literature summary document and a by article review document have been completed as part of the research.

2.4.2 Secondary Data Review

A range of secondary data was sourced and reviewed, particularly to inform analysis of epidemiology and the societal costs of blindness. The following data was reviewed:

• RNZFB Annual Reports and Financial Statements.
• ACC Annual Reports and Financial Statements.
• MSD Annual Reports.
• RNZFB Membership Database.
• Statistics NZ Census (2001).
• Statistics NZ Population Forecasts.
• Statistics NZ Disability Survey (2001).
• Statistics NZ Time Use Survey (1998/1999).

2.4.3 In-depth Interviews

Eleven in-depth interviews were conducted with key informants to provide understanding of key issues for the research and to inform development of the final research design (refer to Appendices for Interview Schedule).

Key informants were identified by the RNZFB as having expertise in the costs of blindness as well as other areas with relevance to the study. These areas included: research with the blind and vision impaired; benefit provision; consumer groups; disability; Maori and Pacific; issues for the deafblind; employment; education; and the elderly.

The final sample of informants was selected by the researchers in consultation with the RNZFB. Selection aimed to provide a broad mix of relevant expertise and representation within the research.

Many of the key informants were blind or vision impaired themselves. Relevant findings on the costs of blindness from these interviews have been incorporated into the research findings where appropriate.

2.4.4 Focus Groups

Four focus groups were conducted with RNZFB members to further examine the day to day costs of blindness.

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Budget constraints limited the total number of groups possible. One group respectively was conducted for: youth, persons of working age, elderly persons, and parents of blind and vision impaired children.

Participant Selection

Specifications for the composition of each group were set to achieve a diversity of representation based on: sex, ethnicity; age, type of vision impairment, employment status (employed, self-employed; unemployed), location, and living situation. Partners, caregivers and other support people were also invited to participate.

RNZFB staff members were asked to identify RNZFB members fitting the eligibility requirements and composition targets set for each focus group. Purposeful recruitment was then undertaken from the compiled lists of potential participants. Recruitment was undertaken by telephone and conducted by members of the RNZFB 0800 team using a pre-prepared recruitment script (refer to Appendices for recruitment script). Each confirmed participant was sent a confirmation letter in the format of their choice, confirming their participation and providing further details on the objectives of the research and the focus group.

The final composition of each group is detailed in the Appendices.

Research Process

A total of thirty-eight people participated in the four focus groups (refer to Appendices for further description of group participants). All groups were conducted at Awhina House, Auckland and moderated by at least two members of the research team. Groups were moderated using semi-structured interview schedules developed by the researchers in consultation with the RNZFB (refer to Appendices for example of interview schedule).

Each group took between two and three hours.

2.4.5 Telephone Survey

A national telephone survey was undertaken of 200 RNZFB members using Computer Assisted Telephone Interviewing (CATI). The survey gathered data on the financial, time and to a lesser extent, opportunity and qualitative costs of blindness.

Questionnaire Design

The questionnaire was developed by the research team in consultation with RNZFB staff (refer to Appendices for questionnaire). The development of the questionnaire was informed by information derived from all previous stages of the research, in particular the literature review and key informant interviews.

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The questionnaire focused primarily on deriving information on quantitative financial and time costs. While there was some exploration of opportunity and qualitative costs, it was recognised that these costs are generally more appropriately explored through qualitative methods.

The questionnaire used in the survey was comprehensive and highly structured so as to provide in-depth and detailed examination of costs experienced. Prior to and throughout the interviews, respondents were reminded of the range and type of costs likely to exist and reminded to focus only on those factors legitimately defined as costs. Interviewers were trained to prompt and probe on answers as appropriate to further ensure compliance to this requirement.

Respondent Selection

To ensure that the survey sample collected reasonable data from the range of members, quotas were set by age, sex, ethnicity, location, eye condition. Quotas were also set to ensure that a minimum number of employed and student members were surveyed.

Within these quota characteristics, respondents were randomly selected from the RNZFB membership database.

Recruitment was carried out by telephone by staff of the Gravitas Research Survey Centre in Auckland. A structured recruitment script was used to determine initial interest in participating and to cover issues such as confidentiality (refer to Appendices for recruitment script). Those interested in participating were sent a follow-up letter in the format of their choice. It provided further information, including areas to be covered in the interview. The letter assisted undecided respondents to decide about participation as well as assisting confirmed participants to prepare for the interview.

Those receiving letters were re-called approximately one week later to either complete the interview or to confirm participation and establish an appropriate time and day for the interview to be completed.

Interview Coverage

The survey questionnaire covers the following potential cost areas:

• Daily living including personal tasks and shopping
• Equipment (including training)
• Accommodation and Home Alterations
• Education and Training
• Employment
• Transport and Travel
• Medical and Health
• Social, Recreational and Leisure

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• Unpaid and Voluntary Work

Interviewing Process

The survey was fully piloted at the close of 2003 and a second round of piloting was conducted in early 2004. Final interviews were conducted between 2nd March and 4th April 2004.

The interview was comprehensive, with interviews taking on average 54 minutes. Respondents were offered the opportunity to break the interview at any stage and resume at a later time - if they were feeling tired or needed time to consider questions. The response rate (proportion of members contacted who completed the interview process) was 67.3%.

In some instances, interviews were conducted involving both the respondent and a support person (usually family members or caregivers). Where the RNZFB member gave consent, some support persons were also solely responsible for responding to certain sections (e.g. shopping). In a few cases, surveys were totally completed by caregivers on behalf of the RNZFB member. This ensured these members' participation in the survey, as they were otherwise unable to participate independently (e.g. because of disability).

2.5 Survey Data Analysis

2.5.1 Data Weighting

The data collected was weighted by age, sex, location, ethnicity, vision acuity and whether employed or not - using the RNZFB membership database as the target population.

2.5.2 Estimating Costs

Once the sample collected was weighted to be reflective of the structure of the RNZFB membership, mean and total costs were calculated for each of the cost areas covered. Mean costs were expressed as mean costs per member - acknowledging that not all respondents and members incur every cost.

In order to put a financial value on time spent undertaking tasks and helping blind and vision impaired people in addition to time that sighted people would spend on such activities, we have valued time at $12 per hour. This is consistent with the monetary value assigned to volunteer time in the "Value-Added for Voluntary Agencies" (VAVA) project conducted by Price Waterhouse Coopers. In comparison, the Transfund Project Evaluation Model valued time for non work travel purposes at $7 per hour and time for work travel purposes at $21.30 per hour in July 1998. These values are used by Transfund to estimate the financial cost of people being trapped in congested traffic. The value used for the VAVA project falls between the upper and lower estimates provided by the Transfund evaluation methods, and because this project assesses costs for both

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employment and non-employment tasks, the project team has decided to use the VAVA project value of $12 per hour for consistency purposes.

Three populations for blind and vision impaired people in NZ have been considered. The first is the RNZFB membership. Since the RNZFB membership is a subset of all blind and visually impaired people in New Zealand as membership is voluntary and eligibility criteria based on sightedness apply, two further potential populations have been considered. These estimate the total number of blind/vision impaired people according to ophthalmologists and international literature and the second estimate is based on reporting in the Disability Survey conducted by Statistics NZ in 2001.

2.5.3 Cost Calculations

Costs were recorded in the survey in a number of ways, based on the cost area under discussion and respondent's situation and recall. These include dollar costs, time spent in hours and recording of equipment owned or held. Typical cost values were then applied to equipment and time and these cost assumptions are detailed in the relevant sections and in the appendices.

All costs were annualised and capital items were depreciated to provide a typical annual cost.

2.5.4 Cost Allocation

The survey questioning established who met the costs identified and where these were shared and to what extent.

Throughout the report, costs are categorised as being incurred by either the 'individual' or 'society'. These are defined in preceding sections of the report.

2.6 Methodology Limitations

The limitations of the research methodologies used in the current research are discussed.

2.6.1 Survey Methodology

The limitations of using survey methodologies in cost of blindness research have been previously discussed, particularly in relation to the reliance on participants to identify and recall costs (Chou et al, 2003). Previous authors have also noted that some everyday costs can be taken for granted (BCA, 2003; RNIB, 2000; Curtis & Disabled Persons Assembly, 1986). It has also been recognised that surveys may provide only an assessment of current costs and do not account for ongoing costs and the "dynamics of disability" (Curtis & Disabled Persons Assembly, 1986). Surveys can also be particularly time consuming for both participants and the interviewer (Newbold,1987).

Two studies have used personal diary keeping in conjunction with other methods (BCA, 2003; Chou et al, 2003). Diary keeping is likely to provide a more accurate measure of

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costs, as once the cost is incurred it is immediately recorded, thereby eliminating reliance on recall (Chou et al, 2003). The method does, however, require a considerable amount of commitment on behalf of the participant and a significant resource investment.

Responses undertaken within the current study to address limitations of the survey methodology have been discussed in preceding sections of the report.

2.6.2 Additive Effect of Other Disabilities

Given the age profile of blind and vision impaired persons, vision impairment is often experienced with other disabilities. The multiple experience of disability may have an additive effect on the costs of blindness experienced, for example, mobility being further restricted by physical disability.

The current study has not attempted to factor in this potential additive effect and has instead sought to concentrate singularly on those costs clearly attributable to blindness and vision impairment. It is acknowledged that 'extracting' one cost from another is likely to have been difficult for those respondents experiencing multiple disabilities.

2.6.3 Limited Evaluation of Indirect Service Related Costs

Key informant contributors to the research suggest that costs of blindness may indirectly result from the level or type of service provision to blind and vision impaired people. For example, some perceive mainstreaming education to have reduced the level of specialised teaching support provided to blind and vision impaired students and the loss of some skill development previously achieved through an institutional approach to education. These outcomes are in turn suggested as creating further difficulties for young blind people, for example, in the area of employment. While acknowledging that such indirect costs may exist, it is beyond the scope of the current study to undertake the level of evaluation required to examine such issues further.

2.6.4 Sampling Limitations

Any sample is constrained by its size. A sample of n=200 is not large and has a maximum error of +/- 6.9% at the 95% confidence level (based on a random sample). Since the survey sampled blind and vision impaired people rather than their families, it is possible that data collected on the impact on families is under-recorded. However, the survey process is detailed and robust and therefore provides comprehensive cost data on the sample collected. In this sense the method can be considered to emphasise depth rather than breadth in terms of the sample coverage. This was felt to be most appropriate for a study of this kind, given limited resources.

Sample numbers of students and employed people surveyed are small and data presented is un-weighted. Consequently, results should be considered as indicative only.

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2.6.5 Education Related Costs

At the time of submitting the final report, a range of data on the costs of providing education services remains unavailable to the researchers (for further information please refer to the separate document, 'Data Collection Issues Encountered During the RNZFB Cost of Blindness Research').

2.6.6 Comparisons in Time Spent Undertaking Activities

The research provides some discussion of potential differences in the average time blind and vision impaired individuals spend undertaking certain activities and the average time spent by the general New Zealand population. This discussion is drawn from a comparison of the Costs of Blindness survey findings on time spent undertaking activities and comparable data from the 1998/1999 Statistics NZ Time Use Survey. Data is compared for activities where the questions used in the survey are comparable to those used in the 1998/1999 Time Use Survey.

The comparisons provide some means to estimate whether blind and vision impaired individuals spend more or less time on certain activities compared to the general population. The findings should, however, be treated as indicative only as there are a number of methodological limitations preventing definitive quantitative comparison. In particular, the 1998/1999 Time Use survey data was collected using personal activity diaries while the Costs of Blindness survey data is derived from respondent self-recall and estimates. The diary methodology will provide more reliable data as respondents are asked to record actual time spent undertaking activities over a defined period of time, with records likely to be made immediately on completion of a task. In comparison, the recall method relies on respondents making assessments of time spent during the interview process itself. We believe this is likely to result in an under estimation of the time spent undertaking activities.

The sample size for the Costs of Blindness survey is also small, providing a further limitation on the reliability of comparisons.

In addition, care is needed when interpreting the meaning of any differences identified between blind and vision impaired individuals and the general population. For example, less time spent on an activity by blind or vision impaired individuals may indicate more time spent by others undertaking or supporting completion of the activity concerned.

Due to the limitations of drawing time spent comparisons from the available data, the findings are only described qualitatively and no quantitative data on differences are presented.

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2.7 Report Structure

The review of the research literature is initially presented followed by a discussion and cost estimates of welfare provision to blind and vision impaired people within New Zealand. The current and future number of blind and vision impaired people living in New Zealand is then estimated. Subsequent sections then examine the costs of blindness related to education, employment, daily living, and transport and mobility. The social costs of blindness are also discussed. Findings are then discussed and final conclusions drawn, including research implications and future research needs.

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