• Cost Of Blindness - Executive Summary Table: By Cost Area Activity, Individual And Society
• Introduction
• Interesting Research Snapshots:
• Additional analysis shows "true" cost of blindness even higher
• Definitions
• Research Methodology
• Sampling Limitations
• Cost of Blindness-Personal Stories
• Quotes from Cost of Blindness Research
• Footnotes

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Cost Of Blindness - Executive Summary Table: By Cost Area Activity, Individual And Society

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Introduction

The "financial and time cost of blindness" to the approximately 11,500 RNZFB members and their families (e.g. "individuals") is a whopping $60.9m per year (1), according to independent research commissioned by RNZFB.

In addition to the $60.9m in costs of blindness shouldered by "individuals", costs of blindness to "society" (e.g. government, charitable organisations not including the RNZFB), friends and neighbours - amount to another $27.6m (including approximately $19m in benefits and compensation paid to persons for the primary reason of blindness or vision impairment, but excluding ACC).

"The individual costs of blindness are understood as those extra, non-optional costs incurred by blind or vision-impaired (RNZFB members) because of their blindness or vision impairment. The costs are above and beyond those that would be encountered if the person did not have a vision impairment," according to the research (available in accessible formats through the RNZFB).

This Cost of Blindness research, conducted by Gravitas Research and Strategy Ltd and Market Economics Ltd, shows that the individual costs of blindness "at a personal level can be diverse and highly individual", and can be grouped into these main categories:

• carrying out domestic tasks $24m
• day to day travel (excl work travel) $13.6m
• shopping $5.4m
• recreation $4.8m
• specialised equipment $3.2m
• medical $1.95m

(While these costs are quite large, additional analysis of this data, found on page 15, shows that even this excellent report does not tell the whole story about the cost of blindness.)

According to the Gravitas/Market Economics research, the costs of blindness can be diverse and highly individual, with a myriad of variables, ranging from the timing of the onset of blindness to the amount of support available. The

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magnitude of costs of blindness may also change over time e.g. ageing commonly carries additional costs of blindness for Foundation members.

Paula Daye, RNZFB Chief Executive, says: "Everyone involved in the blindness community knows that being blind or vision-impaired is expensive for individuals, families and society - in actual costs, time costs and opportunity costs. But determining the cost of blindness is like asking how long a piece of string is. No-one anywhere in the world has come up with the perfect, undisputed research on the cost of blindness. It's just too complex.

"This research cannot be used to derive a meaningful average cost per individual RNZFB member - the variations are too great for this type of averaging to have any meaning. But we believe it is the best research on the qualitative costs of blindness ever done in New Zealand and should prove enormously useful for the Foundation and Government to work with," Paula says.

RNZFB Chairman Don McKenzie, (featured on page 18) who is blind and whose wife is vision-impaired, says the RNZFB commissioned this research to inform Government, to protect the "Blindness Benefit" and to show that many beneficiaries with serious long-term disabilities could become taxpayers with the right sort of support. (2)

The completion of this major project comes at a critical time, as:

• The Ministry of Social Development (MSD) is planning to create a Single Core Benefit that could affect the Blindness Benefit, which is provided to approximately 1320 RNZFB members (2002 information)
• The MSD and the Health Research Council are preparing to launch an ambitious, multi-year research project to determine the total cost of disability in New Zealand

"I am delighted that we have completed this significant research and can deliver it to Central Government, along with additional analysis that makes even more compelling reading," says Don. Don is a member of MSD's Client Reference Group on the Government's Disability Strategy, which has met several times and is expected to meet again before the Ministry announces changes to benefits, possibly later this year.

He has championed the cause of RNZFB members, and the "uniqueness of blindness as a disability; the real needs of

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individuals with unique disabilities should be met with common- sense solutions". The RNZFB has argued historically that Government must never change criteria and refuse to provide a Blindness Benefit to blind people in employment. "If you are blind and employed, your costs go up, not down - because of adaptive technology equipment, transportation, and the like. If the goal is to get more blind and vision-impaired people into employment, the Blindness Benefit must remain as it is. You don't want to penalize blind people for succeeding," says Don.

The MSD has promised that no-one on a benefit would be worse off under the proposed changes. The RNZFB seeks reassurances that this remains the case, and asks that Government accept as "given" - due in part to this Cost of Blindness research - that there are significant and wide-ranging costs of blindness and vision impairment.

"Presently, every individual seeking the Blindness Benefit must sit down with a case manager and justify their need for funding. This is onerous and unnecessary, and especially in light of this Cost of Blindness research, simply not necessary. Some things are simply ridiculous, like a guide dog handler having to literally bring an empty bag of dog food or the receipt to prove this cost of blindness," says Don. (Note: Guide dogs are provided free to RNZFB members, but members pay for their upkeep).

The RNZFB and the Association of Blind Citizens of New Zealand Inc (ABC NZ Inc) will be presenting the Cost of Blindness research to a wide range of Ministers, MPs and Ministry officials from March. ABC NZ played a major role in bringing the Cost of Blindness research project to fruition and, over the decades, lobbying to protect the Blindness Benefit.

Interesting Research Snapshots:

• This research does NOT capture the costs experienced in educational settings. While there certainly are costs to individual members and their families (related to additional time, tuition, parental loss of income, etc), these costs were not obtainable in this research.
• RNZFB members have to spend over and above the costs experienced by their sighted counterparts to achieve the same level of participation in society - in work and social activities.
• Social costs of blindness suggested by the research include relationship failure, family difficulties, depression, and loss of social connectedness.

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• 41% of all blind and vision-impaired shoppers feel they pay more for their goods because they have a restricted ability to take advantage of sales and specials (many are only advertised in print). Transportation and in-store support also are major hurdles.
• RNZFB members, most of whom lose their sight gradually over time, say that losing their driver's licence leads to a terrible loss of independence and, frequently, self-worth.
• Members have to spend much more time and effort preparing for tasks or travel, and then additional time doing them - far more time than required by sighted people. This gobbles up time that otherwise could be used for generating income, gaining tertiary qualifications or simply enjoying life.
• Members report enormous amounts of "dead time"; waiting for public transport or friends or family, waiting for callbacks when trying to arrange transport, etc.
• 24% of respondents had to add special safety features, 20% extra lighting, and 5% had to make structural changes to their house (including safety railings, bigger windows, etc.)
• Family members reported providing 290 minutes of support per week for domestic and personal tasks alone (almost all of this is unpaid work).
• Society helpers provide an average of 174 minutes of weekly assistance (80% of these are unpaid).

Costs NOT included:

Some costs of blindness that researchers did not include in either the $60.9m costs to individuals or the $27.6m to society were:

• $21m annual costs of providing service by RNZFB to its approximately 11,500 members (only one-third of this funding comes from Government sources)
• $690,000 'postal concession' - postage costs for delivering talking books and braille that are not charged to the RNZFB by New Zealand Post
• Untold medical costs for secondary health conditions related to blindness or vision impairment (one-third of respondents said they suffered from bruises, strains, broken bones, etc., frequently suffered in falls. These injuries would have carried hard costs and time costs for treatment, travel, etc.)

Additional analysis shows "true" cost of blindness even higher

Additional "number crunching" was done on the Cost of Blindness data

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by Dr Jonathan Godfrey, Lecturer in Statistics, Massey University, and graduate student Deborah Brunning. "We've gone deeper into the research by Gravitas and Market Economics - which was an enormous job of data collection. We are convinced that the costs highlighted in this research, while large, must be considered conservative and that they don't tell the whole story," says Jonathan.

The $60.9m highlighted in the Cost of Blindness research as financial and time costs should be considered something like a Gross Domestic Product number - the value to the economy of these people and what they spend. It's not a measure of the "true costs of blindness," says Jonathan, a newly elected member of the RNZFB Board, a guide dog handler and one of the few blind people in New Zealand with a PhD. He stresses that the true costs of blindness must include:

• actual costs incurred (like those captured in the Gravitas/Market Economics research)
• costs not incurred because you can't (RNZFB members are often isolated because going out is simply too hard, and may involve asking for help from others)
• costs you don't incur because you must organise your life differently (like not having the choice of owning a car, playing most sports, frequently going shopping or to the pub with mates)
• opportunity costs (having lower educational opportunities and earning potential means countless opportunities easily available to sighted people are not available, certainly not 'easily' available, to blind and vision-impaired people)
• life choices (feeling pressured to live in a major city and near public transport, or staying home and not spending money because going out is just too hard)

"If you are forced to live on, say, $10,000 a year due to your blindness, that's not a decision you have taken. Your income level, and the things you cannot buy or do or experience, are absolutely part of the 'true' costs of blindness. The 'true' costs of blindness are not solely what you spend because you are blind. It's also what you cannot spend because you lack the financial resources or the ability to engage in society," says Jonathan.

"We estimate that 66% of members want to use taxis, but that only 55% of members currently do incur a personal cost for them. That's just using the information from people that do recognise their taxi use is limited. How do we really find out who isn't using taxis to meet all their

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needs?" What may not be obvious is the fact that blind people who want to use a taxi - but don't - would frequently choose to stay home rather than try to use buses which requires;

1) getting from your door to a bus stop
2) getting onto the right bus;
3) getting off at the right stop or terminal;
4) repeating this with two or three other buses;
5) finding your way to the final destination; and then reversing the process to go home.

RNZFB notes that the Total Mobility (TM) scheme is significantly underfunded and its criteria vary across the country - taxi subsidies range from 10-50% and can end without notice when the regional provider's TM funding runs out.

Definitions

The definition of blindness used in this research is that used by the WHO (1997) - total blindness is defined as anything less than visual acuity of 3/60 but not including 3/60; low vision is defined as anything less than 6/18 but not including 6/18. This is stricter than the RNZFB's criteria for membership - your visual acuity does not exceed 6/24 in the better eye with corrective lenses, or you have serious limitations in your field of vision generally not greater than 20 degrees in the widest diameter. (This does not affect 'costs of blindness' because these costs are for blindness and vision-impairment.)

Research Methodology

Information in this report was collected through: a national survey of 200 RNZFB members using Computer Assisted Telephone Interviewing; 11 in-depth key informant interviews; four focus groups with RNZFB members; a review of national and international literature on the costs of blindness; and an extensive review of secondary data sources. The report was completed by Gravitas/Market Economics in December 2004. Analysis work was commissioned by the Royal New Zealand Foundation of the Blind and the Association of Blind Citizens (NZ) Inc in 2005. The report was released publicly in March 2006.

Sampling Limitations

The survey sample is considered "detailed and robust and therefore provides comprehensive cost data on the sample collected," according to the researchers. It was considered that this research, and limited resources, would best be done seeking to emphasise "depth rather than breadth."

Cost of Blindness-Personal Stories

Every RNZFB member is unique, and their costs of blindness equally

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unique. But in an effort to "put a face on the Cost of Blindness research", Outlook asked a number of members to "open their books". (Note: inclusion in this story does not necessarily mean that these members were interviewed for the Gravitas/Market Economics research).

Don and Rosemary

Rosemary and Don McKenzie with guide dog Senna commuting from Waiheke

Don and Rosemary McKenzie are semi-retired, living on Waiheke Island. Don is totally blind, a guide dog handler, and Chairman of the RNZFB. His wife Rosemary, also a member, has some useful but fading vision. They have two children and "five, going on six" grandchildren. Both have had professional careers as physiotherapists and, thus, have had higher incomes than most RNZFB members, but also higher expenses.

"We have had to spend more to function at a necessarily high level and be part of our community," says Don. "Our extra equipment alone has cost over $27,000 including computer screen reader, braille printer, notetaker and braille labeler (upgraded about every five years). "We know that our sighted professional contemporaries are demonstrably better off than we are, and that it's never been an equal playing field. But we have run the race, with the support of New Zealand's current social security provisions as they relate to the blind and as they ought to relate to all people with serious and unrelenting incapacity." The McKenzies say their disability means it takes extra time and effort to live, function and participate as marriage partners, parents, professionals and the offspring of ageing parents. Over the years they've employed home help and handymen for domestic chores and property maintenance. Their disability also dictated that they live close to a bus route.

Rosemary manages the supermarket shopping but she sticks to known product lines. "Venturesome supermarket shopping is seldom an option and researching comparative deals in other kinds of purchases is a fraught business."

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Don and Rosemary McKenzie's Cost of Blindness:

• Guide dog (food, health and fencing): $2315
• Home help (including reading support): $1456
• Property maintenance: $4504
• Supermarket delivery: $250
• Equipment (*PC, screen reader, *notetaker): $5440 (* amortised over 5 years)
• Monoculars and extra lighting: $750
• House location (near buses, extra storage): $1000
• Medical: $680
• Taxis: $1251

Total (couple): $17,646 pa

Total (individual): $8,823pa

(Don recently spent $6,000 on hearing aides. This is likely a cost of blindness, since many vision-impairments also have a linked hearing disability.)

Colin Casson

Colin and Atonia Casson

Colin is in his early 60s and lives with his wife of 29 years and youngest son on Auckland's North Shore. His eyesight worsened in 1960 with Macular Dystrophy. He then developed Glaucoma and in 2003 was diagnosed with Cataracts. Four years ago he went from earning $50,800 a year as executive director of a chain of petrol stations, to earning just $12,230 from WINZ - a huge financial loss to say nothing of the social costs. "Everything takes longer. Sometimes it's only a few minutes, but other times it can be many hours." To compile and communicate his own costs of blindness, he had to get to the RNZFB's office - a journey of an hour - to use an adapted computer and email. Two trips were required, gobbling up a day for a task that would have taken 30 minutes when he was sighted. He finds it difficult to calculate his personal costs of blindness, but here are some:

Colin Casson's Cost of Blindness:

• Medical (including transport): $274
• Medication: $12
• Glasses: $320
• Foundation membership and disability card: $30
• Loss of earnings: $39,570
• Transport provided by friends (@$1.13 per km): $870

Total: $41,076pa

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Glenn Hanneman

Glenn, Lynda and Luke Hanneman

Glenn Hanneman emigrated from South Africa to Auckland four years ago with his wife and son. Born with vision problems, Glenn had attended the Pioneer School for the Blind in Worcester in the Cape, worked as a telephonist and then went into computer programming as an analyst. Glenn has only peripheral vision and his Age Related Macular Degeneration is worsening. He works full-time, using a CCTV, but is not eligible for the Blindness Benefit. "That's the biggest bugbear. Because I have a partner who's sighted and I work, I don't qualify. People who have a blind partner get the benefit. It's discrimination. Even though I can rely on someone else's sight - and her time - I still have additional costs from being blind. In the UK they've got it right. You get the benefit no matter what your relationships." Glenn's work contract ends in March. He is looking for another job but finds that it's not a level playing field. "There are usually 10 or 20 other people applying with the same qualifications, so inevitably it's easier for the employer to choose someone else rather than get over their prejudices. I also find that I'm paid significantly less because of my disability." Travel-wise, there are also inconsistencies in the free or discounted travel offered by different bus companies."Companies assume that because you're blind you don't work. I can't get a discount with Stagecoach because I have to travel outside of the discount hours in order to get to work on time."

Glenn Hanneman's Cost of Blindness

• Taxi services $400
• Bus services (no subsidy) $800
• Lawn and garden services $410
• CCTV purchase and maintenance $500
• Sport lawn bowls (transport and other costs) $300
• Income lost (paid below market rates) $3000

Total $5410pa

Quotes from Cost of Blindness Research

In addition to the "hard numbers" gathered by researchers, comments such as these from RNZFB members put the unique personal

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costs of blindness into context:

"...housework, it takes you at least twice as long because if you're vacuuming a floor, you'll go over an area more than you need to, to make sure it's clean." (Female older adult)

"The biggest thing, over and above everything is the time to teach our children simple techniques of daily living... It took me six weeks of morning, noon and dinner to get [my child] to drink through a straw." (Mother of vision-impaired child)

"When you own your own home, one of the ongoing costs is gardening and mowing lawns. You have to pay someone to do it. And also every three to five years you have to get your house painted and the guttering and roof (done). It's just ongoing. (Working aged male)

"Some of these sales might be 20% discount on say $200 - that is $40 off. But quite often it can cost that to get there. So what was the point? You might as well buy it from the shop across the road instead of [paying] $160 and a taxi." (Working aged male)

"We had one big expense moving into this place (the new house) - had a patio off the sitting room...was quite high up... no railing or steps off it... (putting up railings) was one of the first things we had to do...Had I been a sighted person, I could probably have left it like it was." (Older adult female).

"I could move further from the central city. Even though it would be cheaper, I just don't feel comfortable going... There wouldn't be as good public transport." (Male youth).

"The last (injury), which was a bad one, wrecked both my knees. I was injured in five places and it took me a year of physio at the hospital to get over that and sort my legs out. I never saw the obstacle that was in my way on a pavement, left there by kids." (Female older adult)

"You never plan when you retire that you are going to be blind... you think that you will be gallivanting [around] ... bit of this and that and popping around garden centres. And you just can't do those things anymore." (No attribution available)

"We go to a play group on a Friday. We live in West Auckland and we travel all the way to North Shore to be with peers for the children, then our children go to Homai pre-school, which is in South Auckland... the transportation at the time is unbelievable." (No attribution available)

"What do we do? Do we pay the money now and let her get on and do what she will be doing at school, or do we sit around and wait for funding? Of course the answer is that we had the money, so we did it [but] you are never going to get that money reimbursed." (Mother of vision-impaired child)

Footnotes

1. This is only related to the costs of blindness experienced by RNZFB members, their friends and families. If these findings were extrapolated onto the much larger blind and vision-impaired population of 46,700 (as estimated by leading New Zealand Ophthalmologists), the annual cost of blindness would be $359m. The RNZFB does not believe this extrapolation is valid but, clearly, this larger group would indeed bear costs of blindness.

2. In 1924, an amendment to the Pensions Act 1896 meant that the blind were the first disability group to become eligible to receive a pension.

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