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3.5. Trials and Tribulations of a Sibling Caregiver

3.5.5. The Cost Factor

The Joseph Rowntree Foundation of the United Kingdom undertakes research programmes and “innovative development projects which it hopes will be of value to policy makers, practitioners and service users”. One of these projects is entitled

“Disabled People's Costs of Living”. The project was authored by Noel Smith, Sue Middleton, Kate Ashton-Brooks, Lynne Cox and Barbara Dobson with Lorna Reith. It was basically an inquiry to establish additional requirements of persons with disabilities including details of the related monetary expenses. This was necessary since it has never been denied that persons with disabilities do face additional costs to fulfil their basic needs but there is no evidential material on the exact quantum involved. A costing budget illustrative of these additional needs of persons with disabilities was developed in this research using a “rigorous consensual standard methodology”. Their findings have brought to light the additional costs relating to a person with disabilities. The findings have great relevance to this present research: where the person with disabilities is not earning, the cost of their needs is borne by the caregiver or another person that is supporting the caregiver.

Smith et al. (2004) explain that studies relating the financial burdens borne by persons with disabilities are not lacking (Sainsbury, 1970; Blaxter, 1976; Hyman, 1977;

Townsend, 1979; Martin & White, 1988; Grant, 1995; Burchardt, 2000; Gordon et al., 2000, as cited by Smith et al., 2004). In addition, Baldwin and Carlisle (1994), as cited by Smith et al., 2004, discovered that the presence of a person with disability in a family generally relegates the family into poverty.

70 Doessel & Williams (2011), in quoting Sen (2004), explain that disability encompasses dual form of handicaps i.e. the ‘earnings handicap’ and the ‘conversion handicap’.” The first manifests itself because many persons with disabilities are either unemployed or work at jobs with inferior status and in consequence receive lower remuneration (Shaar

& Mccarthy, 1992). Their study also revealed that when persons with disabilities attempted to seek employment, they constantly meet obstacles and to overcome them they have to be from a family with connections with influential people, are financially sound and possess a status in that society which is illustrated by their sources of income, status through marriage and the house that they live in.

The second component of conversion handicap for persons with disabilities to perform the same task as non-disabled person, a higher source of income is necessary to effect payment for caregivers, purchase of wheelchairs or the installation of ramps. (Doessel &

Williams, 2011, quoting Sen, 2004). Effectively they conclude that the inability of a person with disabilities to enjoy the same status of life as a non-disabled person with the same amount of remuneration constitutes the very essence of this handicap (Doessel &

Williams, 2011, quoting Sen, 2004).

Many studies have tried to identify the additional costs incurred by persons with disabilities and, where they have no income, by their caregivers or their financial supporters. Wang et al.(2010) state that “the extra costs experienced…people with disabilities” commence with “the direct costs due to functional disabilities, such as the cost for treatment, special care, special services and aid devices.” These are followed by

“the added cost of daily living specific to functional disabilities incurred as a result of unsuitable or discriminatory social service practices and policies, such as the cost of food, housing, transportation and communication, which may be higher than the cost for

71 people without functional disabilities.” Finally, there is “the opportunity cost, such as other family members’ income reduction due to supporting the older person.”

Berthoud (1991), in analysing the types of costs that are directly related to a person with disabilities (or his caregiver or financial supporter), identified the following four specific cost areas.

Firstly the basic needs of a person with disability are not very different from others but additional costs arise because of caregiving services, transport and extra fuel. Secondly, there are periodic costs compared with those that are one-off; the former encompasses expenses such as attire, nourishments and fuel whereas the latter include expenses such as special renovations needed or the acquisition of a more appropriate house. Thirdly, there are certain costs which are specifically incurred only by persons with disabilities such as caregiving, medical and transportation costs. Finally he details some negative costs whereby the costs are reduced for persons with disabilities exampling that a deaf person would not have the need for a radio etc.

The study by Morciano et al.(2012) concludes that “disabled people face higher costs of living than do non-disabled people” because “additional costs include the cost of adapting the home, overcoming the difficulties of getting about, and acquiring assistance with everyday tasks that non-disabled people can do unaided.”

Smith et al. (2004) suggest that standard of living of persons with disabilities is impaired due to several reasons. They identify the following examples:

 In terms of healthcare and welfare services, they explain that persons with disabilities have certain specific needs which are either not provided by the

72 statutory authorities or they have to wait for a very long time or its acquisition is a very challenging task (Large, 1991, as cited by Smith et al., 2004) and, as such, they usually acquire it at their own cost.

 Discrimination is also a contributory factor to the financial burden borne by the persons with disabilities Indirectly it personifies itself for example as inaccessible modes of public transport resulting in the need to hire private transport, inability to enjoy banking services because of unavailability of braille or sign language guidance or simply not being able to take advantage of bargain sales due to the shops being non-disabled friendly. Charging additional life insurance premiums or insurance premiums for their cars and mortgage exemplifies direct discrimination (Lamb & Layzell, 1994, as cited by Smith et al., 2004).

 Persons with disabilities also suffer isolation in society. Based on the “Disability in Great Britain” report (Grundy et al., 1999, as cited by Smith et al., 2004), two-fifths of the persons with severe disabilities had not gone on any trips, enjoyed shopping nor visited their family members and friends in the month preceding the conduct of the interview. Although not denying that

“inaccessibility of social venues” could be a contributory factor, Smith et al.(2004) nevertheless are confident that “the primary cause of social exclusion”

is most “likely . . . insufficient income.”

Having considered the general areas of additional costs for persons with disabilities and their caregivers, we shall now look at the different types of costs discussed in the report by Smith et al. (2004). Personal Assistance

The report reveals help with household task and chores is required. Depending on the nature of the disability, additional costs are bound to arise: laundry costs where excretory control is lacking, the cost of a maid or helper where the caregiver cannot manage to turn or bathe the disabled person, and paying for a substitute when the caregiver has to attend to his/her own matters. Where the disability involves hearing impairment, interpretation or communicational services may be needed. In the case of a seemingly sight deficiency, even cutting one’s fingernails may be a task for some disabled people.

73 Food and Drink

The nature of the disability may require the patient to take special food supplements or high protein or vitamin-saturated food or drink just to sustain their health (not as an additional booster). These products are usually expensive and tend to cut a deep hole in the pockets of the caregiver or the financial supporter.

The study by Smith et al. (2004) also illustrates the difficulty in bringing the person with disabilities outside the home for food, including ensuring that the intended destination is accessible to disabled person. As a result of such difficulty, food may have to be ordered for delivery to the home. This can end up being expensive. An example would be cost of celebrating a birthday at McDonald’s, which is normally quite reasonable. If the disabled person is unable to go there, the food, drinks and the

‘organised merriment’ is imported to the house instead, entailing extra costs. Clothing and Footwear

The durability of clothing and footwear is greatly diminished when used by a person whose disability forces excessive strain on them and brings about a higher rate of wear and tear. Extra cleaning or washing due to constant unavoidable soiling also contributes to diminished durability. Additional materials, such as mackintosh sheets, incontinence pads, diapers, etc. need to be used on an on-going basis when the disabled person has no control over their bowel or urinary functions.

74 Housing

Accommodation must be able to meet the needs of the person with disabilities. In many cases, adaptations or modifications have to be made to the home. A person in a wheelchair must be able to access the switches for lights, fan, air-conditioners and other electrical appliances. Toilet facilities may have to be modified to meet their needs. The television should be placed to facilitate viewing. The disabled person must have access to fresh air but the windows must have suitable latches so the person can open and close them on their own. In the case of a split-level or multi-storied building, additional modifications must be made to provide the disabled person with adequate access to all necessary places that they need to go. This may require the installation of a lift or, in the case of a wheelchair-bound person, they must be able to manoeuvre the wheelchair throughout the house with minimal assistance. All these alterations, modifications and renovations will incur costs, albeit not on a recurring basis. Household Goods

Many special household items need to be purchased to accommodate a person with disabilities. For a person with limited mobility, a calling bell is essential. A visual indicator will be needed by someone with a hearing impairment, while a visually-impaired person would need a sound or vibration-based device to summon a caregiver in case of emergency. Sometimes additional safety devices and gadgets must be installed to facilitate the caregiving engagement.

75 Transport

A majority of caregivers suffer additional expenses for transporting their charges to hospitals, to homes of other relatives, to the park or other places. Normal taxis are costly and are sometimes hesitant to pick up a person with disabilities on the pretext that their entry to and exit from the vehicle will take too long. The vehicle itself must be suitable to transport the person with disabilities (e.g., there must be enough space to fit a wheelchair and the caregiver must also be able to follow). Recreation

The person with disabilities is human and every effort should be made to make the person feel just like any other non-disabled person. Therefore, in addition to catering to their essential needs, their wish for recreation, and their desire to enjoy leisure outings should be entertained. This may, however, involve additional costs because non-chargeable alternatives (e.g., a visit to the park) are usually beyond the reach of the disabled because they are not either mobile or the place is inaccessible to them. Other venues may have stairways and no ramp for wheelchairs. Those facilities for person with disabilities are usually on the high end and are, in turn, financially too expensive.

The above illustrates the range of additional costs that a person may have to bear in undertaking the task of caregiving. Generally, voluntary behaviour intended to benefit other people or society as a whole is practiced by many, but it has been noted that the behaviour declines when related costs increase (Findler et al., 2005). Once one realises that the rewards from social activities do not match the high costs, i.e., that the costs

76 outweigh the advantages of prosocial behaviour, there is a tendency to refrain from such activities (Dovidio, 1984, as cited by Findler et al., 2005).

This clearly has a bearing on our research objective of discovering what motivates or demotivates sibling caregivers. Increasing costs discourage the undertaking of a caregiving responsibility. Government can remedy the situation by extending tax relief to caregivers of siblings to encourage them to assume the caregiving role upon the demise of the parents.

Although the trials and tribulations faced by sibling caregivers are numerous, an examination of various studies shows that a silver lining exists in every scenario. Tsao et.al. (2012) enlighten us as to the boons of caregiving: a person who perceived the positive attitude that his parents had of a disability borne by a sibling, and who had a good understanding of that disability, cultivated a strong sibling relationship (McHale et al., 1986, as cited by Tsao et al. 2012). Further, parents and teachers found that siblings of autistic children exhibited excellence in academic performance, had a good perception of themselves and exhibited healthy behavioural adjustment (Mates, 1990, as cited by Tsao et al., 2012). Persons with disabilities convey thoughtful and philosophical messages by reminding us of our vulnerability to misfortune, our susceptibility to calamity. They urge us not to be complacent behind the shield of a false sense of security (Vanier, 1998, as cited by Reynolds, 2012). However, this susceptibility is not only about injury or impairment but includes exposure to happiness, and contentment with what we are and what we have. It cultivates a bond between people, creating an atmosphere of shared dependency (Culp, 2010, as cited by Reynolds, 2012). Persons with disabilities have been known to assist with daily chores

77 at home in accordance with their abilities They take care of younger siblings, coordinate administrative tasks such as the filing of utility bills and calling for new gas cylinders, they take important phone messages and convey them accurately to the intended person, and they educate younger siblings and those with special skills. They have even put their skills to good use to generate some form of financial assistance for their caregivers.

Evidently, the sacrifices of the sibling caregivers can never be overrated; extra costs are incurred, psychological strains are endured and physical trauma is tolerated. Although the motivation for such endurance seems to come from the caregiver’s religious outlook and their sense of civic duty (as evidenced by prior literature), one nevertheless cannot deny that the wider acceptance of this responsibility will come with a better understanding of accountability in society. As the accountability to society first and foremost falls on the shoulders of government, the role of the state is examined next.