• 3.1 Introduction
• 3.2 Defining "Costs of Blindness"
• 3.3 Previous Costs of Blindness Studies
• 3.4 Individual Costs of Blindness
• 3.5 Societal Costs of Blindness
• Footnotes

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3.1 Introduction

Previous research has traditionally been undertaken to understand the costs of blindness to wider society (Chou et al, 2003; Wright et al, 2000). Such studies have often sought to provide evidence of the cost effectiveness of enhancing blindness prevention strategies. While this focus is understandable, there is increasing awareness of the need to also investigate the costs of blindness as experienced by persons whose situation is beyond prevention (BCA, 2003; Chou et al, 2003; RNIB, 2000; Newbold, 1987; WHO, 1997). There is also increasing recognition that costs of blindness research must understand the lifetime costs of blindness, including time, opportunity and social costs, as well as financial costs and the costs of service provision.

3.2 Defining "Costs of Blindness"

The 'costs of blindness' are defined in various ways within the literature (Chou et al 2003; Wright et al, 2000; Newbold, 1987; Curtis et al, 1986). Definitions are both specific and broad in terms of defining what constitutes a cost. A number of different costs have also been defined - for example, direct, indirect, optional, non-optional, extra, and total costs.

Some consistency in definition terminology and approach is apparent. Regardless of exact definition, previous studies commonly make a distinction between those costs incurred by the individual and those incurred by wider society. A number of studies use the term 'direct' costs when referring to the 'societal' costs of blindness, while 'indirect' costs is commonly used to refer to 'individual' costs (Chou et al, 2003; WHO, 2003; Wright et al, 2000).

The World Health Organisation (WHO, 2003) sees the 'direct' costs of blindness being measurable though government and organisational expenditure. WHO calculates the global, direct costs of blindness to be US $25 billion per annum. They estimate this figure to at least double, if 'indirect' or individual costs are also accounted for.

Chou et al (2003) also define the costs of blindness as 'direct' and 'indirect'. 'Direct' costs are defined as "resources consumed by health care interventions or programmes, which aim to prevent and treat eye disease and provide rehabilitation and government supports..." (2003: 336). 'Indirect costs' are seen to include "'out-of-pocket' expenses, the value of production lost to society, costs to the individual, and cost to his or her family and friends due to vision impairment" (2003: 337).

Newbold (1987) also conceives the costs of blindness to fall into two categories; costs faced by the affected individual, their family and carers, and costs to society.

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In a recent study, Blind Citizens Australia (BCA) investigates the 'direct', 'indirect' and 'opportunity' costs of blindness (2003). The BCA refers to the 'non-optional costs' of blindness. While this term is not defined further, it is similar to the notion of 'extra costs' (Curtis & Disabled Persons Assembly, 1986). In the Curtis study, 'extra costs' are defined as those "...above and beyond the costs that would be encountered if the person did not have a disability" (1986:02). Similarly, a 2000 study by the Royal National Institute of the Blind is also concerned with 'extra costs', particularly those related to everyday living (RNIB, 2000).

The World Health Organisation (WHO) moves beyond the more simplistic distinction of 'direct' and 'indirect' costs of blindness to identify multiple costs of blindness - 'personal', 'social' and 'economic' (WHO, 1997). The costs of blindness are seen as extending from the individual and his or her family, to the wider community and then, globally. The WHO report also advocates that the economic and social costs of blindness be considered from the perspectives of both the blind or vision impaired individual as well as the country as a whole (WHO, 1997). This position recognises the range of variables that can influence and shape interpretations of the costs of blindness, for example, an individual's personal perception of their situation and their culture. In essence, the costs of blindness are seen as specific to the person, his or her society and their cultural context.

3.3 Previous Costs of Blindness Studies

Newbold (1987) undertook a seminal study on the costs of blindness in New Zealand in the late 1980s. Commissioned by the RNZFB, the research provides a largely qualitative examination of the costs of blindness from the perspective of blind and vision impaired individuals. The study examines direct costs (such as equipment costs), indirect costs (such as travel costs), lost earnings and the experience of other household members and carers (Newbold, 1987).

In the first study of its kind in the United Kingdom, the Royal National Institute for the Blind (RNIB) undertook costs of blindness research in 2000 (RNIB, 2000). The research identifies 'extra costs' incurred by blind or vision impaired persons in five key areas: Household Tasks, Assistance, Communication, Shopping, and Transport. The study recognises the need to understand costs according to life stage, and consequently study participants are segmented by parents of vision impaired children, vision impaired students, those seeking employment, parents, working age and the older aged.

Like Newbold (1987), the RNIB study does not attempt to quantify the extra costs of blindness, however, the study concludes that existing benefits provided to vision impaired individuals in the United Kingdom cover only a small proportion of their needs (RNIB, 2000).

The Blind Citizens of Australia study (2003) investigates costs by age, employment status, gender, ethnicity and geographic location. Consistent with the work of WHO (1997), key

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findings include that non-optional costs of blindness are highly personal, that gender and culture are significant factors in how individuals perceived non-optional costs and, that costs are compounded by the experience of other disabilities and old age.

The BCA study also shows a relationship between income and community participation. Vision impaired individuals with higher incomes are shown to have higher non-optional costs due to increased community involvement, while those with fewer means are often unable to participate in such activities as they struggle to meet even basic needs.

A further cost of blindness study is currently being undertaken in Australia (Chou et al, 2003). The research will collect costs of blindness data using two questionnaires as well as cost diaries which will be completed by participants in monthly batches over one year. Identified cost categories include those relating to medicine, health and community services, informal care and support, and other expenses. A preliminary study piloting the diary method concludes the average, extra monthly cost of blindness to be AUS$316.72 (Chou et al, 2003).

3.4 Individual Costs of Blindness

3.4.1 Communication

Blindness or vision impairment severely reduces the amount of information that people are able to receive and impacts on the way information can be processed (Ryan, 2002). A number of studies have examined the additional costs associated with this impairment. These include the inaccessibility of principal sources of information such as newspapers, magazines and books (Newbold, 1987), the need for special communication equipment and technology (La Grow & Good, 2003; RNIB, 2000; Hanley 1992) and the need for additional support in undertaking communication activities (Newbold, 1987).

The RNIB (2000) discusses costs associated with higher than average telephone use and with alternative communication methods (e.g. tape recorded letters) as well as the opportunity costs associated with being unable to access a variety of information.

Newbold (1987) discusses the communication difficulties often encountered by blind and vision impaired people in social situations. The inability to attract and maintain eye contact makes it particularly difficult to initiate and conduct conversations. The inability to receive visual feedback and to detect responses such as sincerity, humour or irony, can also make it hard to respond appropriately within interactions with others. Newbold (1987) notes that the blind or vision impaired can easily become passive in social situations, relying on others to initiate contact. Communication can be stressful and frustrating, leading blind and vision impaired people to withdraw from public situations or develop a tendency to associate only with close friends (Newbold, 1987).

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3.4.2 Daily Living

Identified additional costs related to daily living include: the cost of specialised household equipment and/or the need to modify existing equipment (RNIB, 2000), the additional time taken to undertake daily activities (Newbold, 1987), and the need for either paid or unpaid assistance to undertake household and other daily living activities (Newbold, 1987; Guralnik, 1999; RNIB, 2000). The RNIB (2000) also notes increased costs associated with 'over-cleaning', both in terms of the time taken as well as excessive use of cleaning products and equipment.

The RNIB (2000) study reports that the elderly often live alone and therefore may be more dependent on home modifications and outside hired help to maintain their independence. The authors note that the situation of the elderly blind and vision impaired may be further complicated by other disabilities, illness or general body decline.

Results from the 2001 New Zealand Disability Survey show that 71% of adults in households with sight limitations used some kind of special equipment or service for people who are blind or vision impaired (Statistics NZ, 2003). Equipment used includes glasses and contact lenses (39,900 people) and hand held or desk-mounted magnifiers (18,200 people). The survey also concludes that 97% of adults in residential facilities with sight limitations use special equipment or services. This included glasses or contact lenses (5,500) and large print reading materials (1,900 people).

3.4.3 Accommodation

A number of studies conclude that blind and vision impaired people face significant additional costs related to their accommodation (BCA, 2003; Newbold, 1987). Identified costs include: the need for special house design or layout, the need to consider (and pay for) housing location in relation to access to amenities, public transport and proximity to work, the difficulty of finding suitable accommodation, and additional safety and security concerns.

3.4.4 Shopping

Identified costs of blindness associated with shopping include: greater reliance on others to undertake shopping (Newbold, 1987), additional time taken to complete shopping activities (Newbold, 1987), and lost savings due to the difficulty of shopping at larger discount stores as well as the difficulty of fully capitalising on sales or specials (RNIB, 2000).

3.4.5 Transport and Mobility

Transport and mobility has been identified as a significant additional cost area for blind and vision impaired persons (Newbold, 1987, Curtis et al, 1986). Access to affordable transport has been inextricably linked to the blind or vision impaired person's ability to be

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active within the community (BCA, 2000). Issues related to transport and mobility generally have also been identified as being vital to success in other areas of the blind or vision impaired person's life (Hanley, 1992).

In their general study of disabilities, Curtis et al (1986) identify transport as the most significant area of cost to individuals with a disability. The authors conclude that the cost of transport can severely restrict the disabled person's ability to participate in activities outside the home and estimate that transport costs account for half of the overall extra cost faced by those with a disability.

Other transport related costs identified include: the expense associated with high taxi use (Newbold, 1987), high reliance on public transport and the subsequent difficulties and time costs associated with using such transport (RNIB, 2000, Newbold, 1987) and the reliance on others when travelling by private car (Newbold, 1987).

The costs associated with having a guide dog have also been previously discussed (Newbold, 1987). Training costs are significant, with training and acquisition a lengthy process. It costs more than $22,500 to train a guide dog, a significant cost to the Foundation's donors and programme sponsors (RNZFB website). Costs to the individual include the cost of food, vet bills and the requirement for a fenced property with a reasonable sized section. Newbold (1987) suggests that having a guide dog may restrict mobility due to some premises and taxis not allowing guide dogs on premises.

3.4.6 Parenting

Additional costs faced by the parents of vision impaired children have been identified to include medical expenses, the need for home modifications (e.g. safe playing areas), and the loss of work, employment opportunities and income as a result of the level of care needed by vision impaired children (RNIB, 2000).

3.4.7 Social Costs

It has been noted that blind and vision impaired people are at risk of becoming socially isolated. The extent of their social world may become restricted due to the difficulty of learning new faces or recognising old acquaintances (Whitbourne, 1985). Increasing social isolation can result in a loss of varied, stimulating and fulfilling social roles, support and contact (Mott & Riggs, 1992). Older people may lose confidence in social situations, increasing their risk of becoming housebound and in developing feelings of insecurity, loneliness and worthlessness (Advisory Council for the Community Welfare of Disabled Persons, 1989).

A range of psychological impacts from blindness and vision impairment have also been described. These include grief, depression and disorganisation of one's personality (Scott, 1991), resentment, fear, uncertainty, denial and anxiety (Sacks, 1996; Hudson, 1994).

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Higgins and Ballard (1999) investigate the meaning of blindness in the lives of four blind people through open-ended interviews. The authors stress the need to consider disability as a social issue in that disability occurs in the manner dictated by society. They believe that disability should not be solely defined by the medical model but must also account for the disadvantage or restriction of activity which occurs when a society takes no or little account of people with impairments and excludes them from mainstream social activities.

The authors challenge the notion of the 'personal tragedy of disability', believing that disability is not randomly distributed, but rather caused by social and cultural standards of living. They discuss the stereotypes and stigmas attached to being blind with typical stereotypes seen as presenting blind and vision impaired persons as helpless, docile, dependent, melancholic, aesthetic (more sensitive to music and literature) and serious minded.

Six themes emerge from the research on the lived experience and meaning of being blind. These are the idea of being blind as: different; expensive, requiring special instruction, having limited life (in terms of opportunities), possessing a bond with other blind and pride in identity, and being excluded from the opportunity to teach others.

3.4.8 Costs to Partners, Family, Friends and Carers

Fewer studies were identified which focus on the costs of blindness experienced by partners, families, friends and carers of blind and vision impaired persons. However, some studies have recognised the substantial financial, time and opportunity costs that are incurred when undertaking care and support roles (Chou et al, 2003; Newbold, 1987; Curtis et al, 1986).

In an American study, Meyers, Lukemeyer, & Smeeding (1998) observe that children with disabilities or chronic illness require extra care that may be expensive not only in terms of dollars, but also in terms of time and forgone opportunity. This includes additional time spent by family and others in care giving and subsequent lost employment and income opportunities.

Meyers, Lukemeyer, & Smeeding (1998) define 'subjective private costs' to be significant costs of disability. This term is defined as qualitative emotional, psychological and interpersonal costs not usually accounted for in traditional cost measures which tend to focus on the costs of medical care, rehabilitation services, special equipment and indirect costs such as the caregiver's lost productivity. The authors also see the need to capture additional monetary costs associated with transportation to doctors and specialists, home and vehicle modifications, extra costs of more specialized childcare, special food and even clothing.

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Half of the families in the Meyers, Lukemeyer, & Smeeding (1998) study were shown to incur direct, out-of-pocket expenses for special medical expenses, food, transportation, or other goods and services directly related to their child's special needs. The authors conclude that the indirect costs of caring for disabled children are as substantial as those direct costs.

A limited number of other studies have reported similar costs incurred by those responsible for supporting and caring for blind and vision impaired people. Chou et al (2003) note that family members may have to give up or reduce their employment in order to provide assistance. Blindness or vision impairment can also result in a change in who is the family breadwinner and increased likelihood that partners and others will be required to take on a larger proportion of activities associated with the home and everyday living (Newbold 1987).

3.5 Societal Costs of Blindness

A number of research projects have investigated to varying levels of detail the costs of blindness to wider society. Most studies have focused on government and organisation costs related to benefits, medical subsidies and lost productivity.

The World Health Organisation (2003) calculates the global government and organisational costs of blindness to total some US$25 billion annually. The University of Melbourne's Centre for Eye Research Australia (CERA, 2004) estimates the governmental cost of Blind pensions and entitlements to be AUS$625 million annually. An earlier American study identified an annual cost of blindness to society of US$4 billion to the American government (Chiang, Bassi & Javitt, 1992).

Two more recent studies have attempted to quantify the government and wider societal costs of blindness. Wright, Keeffe & Thies (2000) assess the costs of blindness to the Australian government and community through examining the cost of providing government pensions, subsides, concessions, equipment and services. The study undertook a case study approach and calculated costs for three scenarios of vision impairment: a retired person with age-related macular degeneration (Case One); a working age person with diabetic retinopathy (Case Two); and a school student with congenital vision impairment (Case Three). Annual direct costs were concluded at AUS$14,686 ($9,749 - $22,507) for Case One; AUS$17,701 ($9,669 -$26,720) for Case Two; and AUS$15,948 ($5,106 - $23,798) for Case Three.

A recent UK study (Ethical Strategies Ltd, 2003) also examines government and societal costs of blindness. Cost areas examined include: healthcare including hospitalisation, surgery, diagnostic procedures, medications, physician visits and nursing time; costs to patients and families including prescriptions, home adaptations, visual aids, time costs including time spent by relatives and household members caring and assisting blind or

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vision impaired persons, and other costs including social services and benefits provided, as well as lost productivity.

Using a case study approach, the researchers generate cost estimates for five scenarios of vision impairment. (3) This requires the modelling of typical patterns for the onset and progression of conditions, treatment schedules and subsequent requirements for rehabilitation and support services. A series of assumptions are also developed for each case regarding the use of resources, treatment received and the cost of providing respective treatment and services. To test the assumptions made, sensitivity analyses are applied either by suppressing or removing some of the assumptions included in the overall assessment.

Estimated lifetime costs are provided for each case study. These range from £19,120 for Case Three through to £257,184 for Case Five. Reflecting age of onset, 48% of the costs for the 50 year old male represented productivity forgone, while 61% of costs for the 16 year old female were attributed to productivity loss. Almost all the costs (96%) estimated for 70 year old female in long-term residential care were attributed to the costs of the residential care provided.

Prevalence estimates were identified for three categories - children, working age and the elderly. Results indicated that the cost of 306,480 cases (based on the official Blind register) of blind and partially sighted persons in the UK cost between £1.4 and £2.9 billion in 2002. The authors recognise that the blind register underestimates the prevalence of cases and also generates a further cost of £4.1 to £8.8 billion for a projected total of 919,440 cases.

Footnotes

3.
1. A 50 year old male suffering from severe vision loss as a result of proliferative retinopathy (£237,591).
2. A 70 year old female with AMD in long-term residential care (£196,876).
3. A 65 year old male with cataracts in both eyes living in a local authority sheltered accommodation (£19,120).
4. A 60 year old female with glaucoma who lives with her husband at home (who provides most of her care services) (£40,324).
5. A 16 year old female student with severe vision loss as a result of retinitis pigmentosa who lives with her parents (£257,184).

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