• 4.1 Employment of RNZFB members
• 4.2 Equipment and other infrequent expenditure items
• 4.3 Analysis of household incomes for working-age members
• 4.4 Constraints on costs associated with total income

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We have already discussed the small sample size and its impact on the statistical analysis of the data collected thus far. This small sample size is in part due to the extensiveness of the range of questions asked of respondents. In the end this excess of breadth over depth in the range of questions asked in the survey shows the extremely diverse range of costs that exist for blind and vision impaired people at the expense of gaining accurate estimates of the actual costs incurred. Work remains in the following areas:

• Improving the accuracy of the actual costs incurred by blind and vision impaired people by collecting more data.
• Understanding the relationship between the actual incurred costs and the real costs of blindness as a consequence of the inability of some respondents to meet their costs of blindness.
• Gaining an understanding of the qualitative reasons why blind and vision impaired people do not spend more money on particular costs of blindness.
• Gaining an understanding of the social impact of blindness, which eventually has its costs, although these may be difficult to measure in dollar terms. Full participation in society is considered a goal for the disabled community. Comparison of the level of involvement that blind and vision impaired New Zealanders have with various activities need to be compared with the participation rates for the rest of the New Zealand population.
• The questions on time use asked by Gravitas for the blind and vision impaired population need to be compared to the amounts of time used performing each activity by the remainder of the New Zealand population.
• Much more research is required to determine the costs of blindness experienced by blind and vision impaired people under the age of 18 years of age as a consequence of their small representation in the sample.

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It may appear that the authors are critical of the Gravitas report in that there were too many questions and not enough respondents. Given the limitation on the resources able to be committed to the costs of blindness project, there was always going to be a trade-off between the effort put into asking a wide range of questions and getting more respondents to answer the questions. As previously stated, it would be useful to ask a much larger group of people the same questions as has been done by Gravitas, but to do so now would create as many problems as are being solved. Combining the data from two surveys taken years apart is difficult and unless a substantially larger sample was obtained, little benefit will be gained from such an exercise.

The Gravitas report shows in great detail the extensive range of costs incurred by a wide range of blind and vision impaired New Zealanders in order to mitigate the effects of their true costs of blindness. When using estimates from both reports, researchers will need to be careful about the language they use. Many estimated costs are based on a small number of people and remain little more than indicative of the magnitude of the incurred costs. Showing the range of incurred expenditure for particular costs would prove useful for illustration of the diversity of experiences of the target population.

If the true cost of blindness is to be sought, the model presented in Section 2 needs to be based on sufficient data. Shortcuts could be taken if there is a desire to get a lower bound for the true cost of blindness for particular groups of blind or vision impaired New Zealanders. In particular, the costs that appear to have high expense (as indicated by the Gravitas findings), or are experienced by a large portion of the target population

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should be investigated further. In all cases, however, the investigators must ascertain if the cost incurred is close to the true cost that would be expended to mitigate all facets of blindness. Respondents must be asked why they spend this amount, and possibly do not spend more.

Consideration of the exploration and intended analysis of survey data (including subgroups), should be carefully done in the planning stage (before the survey is written and the sample is selected) to ensure that the collected data is capable of meeting the needs of the required analysis to meet the objectives. The work undertaken by Gravitas is extensive and shows the difficulty in obtaining the complete picture for the costs of blindness in New Zealand. Research currently planned by the Ministry of Social Development across many different disability types will face even greater difficulties than those overcome by Gravitas.

We strongly urge any further research to include questions about the reasons why people did not spend more than they currently do on activities. These questions would need to be validated in some way, however, possibly by asking how a person would spend an extra $20. This would give greater clarification on the nature of any unmet costs of blindness.

4.1 Employment of RNZFB members

A particular subset of the RNZFB membership of interest is the members of working age, by which we mean between the ages 18 and 65. Recall that there are members outside this age range that are in employment who were among the survey respondents.

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We estimate that 26% of the RNZFB membership are of working age. People of working age were over-sampled by Gravitas, and we know that 34 of these 115 respondents were in employment. On this basis, we estimate that 30% of RNZFB members that are of working age are currently in employment. This means that approximately 8% (we estimate 882 members) of the RNZFB membership are employed and of working age. Approximately 18% of the RNZFB membership is therefore of working age and not currently in employment.

Using the data collected by Gravitas, we have investigated the relationship between employment status of members and other demographic factors. The following points have been extracted from Exhibit A13:

• The majority (73%) working age RNZFB members are of European ethnicity. The data suggests that only 62% of the employed, and 77% of those not in employment are of NZ European descent.
• There are slightly more females (54%) than males of working age in the RNZFB membership, but no significant differences between the percentages of the employed (55%) and not in employment (53%).
• We estimate that 69% of working age RNZFB members are vision impaired. The vision impaired make up a slightly greater portion of the members that are in employment (71%) than those not in employment (68%). This phenomenon may be worth further investigation.
• There are slightly more (55%) working age RNZFB members living in metropolitan locations than other locations. However within the subgroup of working aged employed almost 70% of the RNZFB members live in metropolitan locations. There seems to be evidence that living in metropolitan areas means a member is more likely to be in employment but this requires further investigation.

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Table 1 provides the estimated percentage of working age RNZFB members grouped by employment status and living situation. Over half of all working age RNZFB members live with a partner (with or without children), which is also the case within each employment status subgroup. The proportion of working age RNZFB members who are not employed and are living with family or parents is about three times larger than the percentage for their employed peers.

Table 1: Living situations and employment status of working age RNZFB members, given as percentages. Note that the final column gives the average percentage irrespective of employment status.

We must note that as a consequence of no employed single parent with children being among the survey respondents, there is an estimated percentage of zero, which is clearly misleading. Further research should reveal better estimates for these percentages, and once obtained, they need to be compared to the corresponding values for the wider New Zealand population.

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4.2 Equipment and other infrequent expenditure items

Anecdotal evidence suggests that specialist equipment used by the blind and vision impaired is considerably expensive. Apportioning these expenses to weekly or monthly expenditure is extremely difficult. If the true costs of blindness are to be estimated, it will be the sum of the costs of adaptive equipment actually purchased, and the cost of the unmet equipment needs. Unmet needs come in several forms, being the delays in obtaining equipment as the consumer cannot just walk into a standard shop and buy the products to take home and use; the inability to use products to their full potential; and delays in obtaining equipment while waiting for services such as needs assessments, funding, and product delivery.

It may prove useful to ascertain how frequently blind and vision impaired people obtain the most recent standard equipment. For example, the technological gap could be measured by determining the age of the personal computers the blind have and compare this to the age of the personal computers owned by sighted peers.

When asking questions of any survey respondent about an expense incurred infrequently, errors will be encountered, as many respondents do not know how much money is actually spent on certain activities. The frequency and magnitude of these expenses makes this a difficult task. In the end, a qualitative assessment may in fact be more relevant, as this may show how improvements in policies and practice can be made.

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4.3 Analysis of household incomes for working-age members

To further investigate the ability of blind and vision impaired people to gain employment that allows them to fulfil their potential, the distribution of the incomes could be analyzed. Individual incomes rather than household incomes would need to be found, but using household income in the meantime indicates that there is a significant difference in the distributions of household incomes for the blind RNZFB members vs vision impaired RNZFB members.

• The flaws in this analysis of household income in place of individual incomes include:
• The inclusion of income from MSD benefits on top of actual earned income.
• The effect of personal relationship circumstances. In particular, do we know if the two groups differ in their likelihood to be in a permanent relationship?
• Ability to seek employment. For example, some people who are sole parents may be unable to seek work while their children are young. This would not include those people who are experiencing difficulty finding employment.
• Other factors influencing the potential income of individuals would need to be considered, such as age, gender, education levels, time since diagnosis/onset of blindness or vision impairment etc.

An interesting phenomenon seen in table 2 is that there are more working-age blind people living alone than working-age vision impaired people, whereas there are many more working-age vision impaired people in total. Ultimately, these figures need to be compared to the New Zealand

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population in general to see if blind and vision impaired people are more likely to live alone than their sighted peers.

Table 2 Estimated percentage of working-age members classified by their living situation and their visual acuity

4.4 Constraints on costs associated with total income

One of the chief concerns the authors have is that the costs of blindness are being estimated using the actual expenditure that is currently borne by blind and vision impaired individuals. This does not tell us what the costs of blindness are, just how much money is being spent on specific activities as redress for the impact of blindness. There are two main drivers for the financial constraints placed on the amount of expenditure for blind and vision impaired New Zealanders trying to meet their costs of blindness.

First of all, the total amount of money that an individual has to dedicate to their costs of blindness varies. A person's employment status is a major driver in this regard. The amount of financial assistance available through Work and Income to meet these costs depends on the person's living arrangements, personal income, a spouse's income, and age of the individual (refer current regulations for the Invalid's Benefit and Disability

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Allowance paid by the Ministry of Social Development). Refer to the different propensities here and the different costs.

The second factor that limits the amount of money spent on specific activities is that of competition between the various costs met by a blind or vision impaired individual on all aspects of life; this may in part be dependent on the access to income through employment and from Work and Income payments, but insufficient data exists to test this theory. Refer to the correlation between the taxi and daily living costs here.

Gravitas has asked respondents about the main reason for not using taxis at all, or for not using taxis more than they currently do. Of the 194 respondents to this question who actually had the option of using taxis at all, 75 (38.7%) Stated that they had "no need" for greater use, and 59 (30.4%) said that it was "too expensive". We estimate these figures represent 41.8% and 28.1% of the RNZFB membership respectively, that can make use of taxis. It is possible to argue that the individuals who do not need to use taxis more than they currently do, may not need to use taxis because they have made life choices not to as against the lack of any need whatsoever. This cannot be substantiated without further investigation of the personal circumstances and aspirations of these respondents.

The number of individuals that said that taxis were too expensive strongly backs the notion that there is a significant difference between the actual incurred costs of blindness and the true costs of blindness met through expenditure on personal taxi usage. This difference can be estimated for personal taxi costs using the data collected by Gravitas. This was the only cost that was investigated in this manner, but an attempt to repeat this type of analysis using the daily living costs has also been undertaken by the authors. See Section 7 for more detail.

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The model given in Section 2 does not allow for competition among the various costs of blindness, nor does it allow the total level of income to be considered. Both of these factors will have a material impact on the distribution of the costs of blindness borne by the individuals, but this expenditure should again not be confused with the notional true cost of blindness sought.

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