SIBLING CARE AND THE ROLE OF THE STATE

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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.

78 The government’s role extends further than merely providing facilities for the disabled at public places, allowing them to forego queuing up for an amenity, or giving incentives to companies employing disabled staff. It stretches to include the provision of all-enveloping support whereby the standard of living of a disabled person is equal to that of a non-disabled person. As seen from the previous discussion based on various identified literature, the major factor affecting caregivers is obviously financial.

Reynolds (2012) suggests that we should be “moving beyond disability as a problem to be fixed or cured, and instead considering it as one of the features of fragile human life that requires accommodation through the removal of barriers and/or providing resources for participation.” He reminds us that “disability invokes questions of accessibility and inclusion as a matter of justice and human dignity.” This in turn “necessitate(s) that personhood should neither be defined by nor reduced to disability as if it is something only and always negative.” Public policies should not be “ignoring it or trivializing”

matters relating to persons with disabilities because “there is a real disadvantage experienced by [such] people. The authorities should therefore “addresses such disadvantage [by] accommodating [their] intended participation in activities deemed essential for a community’s life together, both negatively by removing impediments and positively by furnishing with supplementary empowerments aimed at ensuring equity in opportunity.” This includes assisting caregivers whose objectives are in line with the above views.

3.6.1. Financial Problems of the Disabled / Caregivers

Lai et al. (2009, p.443) comments that his finding emphasises how the financial element of accommodating the needs of both their own families and the persons that they care

79 for, within their constrained budget, has an immense psychological impact on the caregiver. Wang et al. (2010, p.81) recognises that “having a family member with a functional disability influences the living standard of the whole family [since] without support and on the same level of income, a family with an older person with a disability will have a lower living standard than a family without one because the interaction between functional disability and an inadequate service system causes the extra cost to fall on the household, leaving less money for other commodities and services.”

Berthoud (1991) explains that “looking at extra costs is particularly appropriate if we think about what would happen if disabled people were given extra income.” He argues that it should not be income that will be used for a necessity (something which even an able bodied person would require) because “disabled people pay them anyway, before they are offered the extra income.” Additional income must have the ability to “allow them to buy the other items which had been displaced by the specific disability-related expenditure.” These are not luxuries but instead “goods and services which were required only because the individual was disabled, but which did not take precedence over basic needs while income was short.” So now the disabled person can have the same living standard as a non-disabled person. Therefore, Wang et al. (2010, p.81) state

“to reach the same living standard as that of a family without [a] person with a disability, a family would need additional income or support to cover the extra cost.”

Government action to ease the financial burden of the disabled and their caregivers, and the form of any assistance it provides, are the subject of the next section.

80 3.6.2. Formulation of Government Policies

It is the duty of government to aid persons with disabilities, safeguard them from sustaining any deprivation due to their disability and contribute sufficient support so that they can live their life to the fullest in spite of their impairment. This will be achieved by ensuring they enjoy a living standard that is equivalent to that of a person without disabilities. Miles (2002b) expresses that “charitable provision is a duty of the state, and kindly concern is the duty of kings and their subjects.” The results of the study by Morciano et al.(2012) show that “the extra costs of disability are substantial, and rise with severity.” They recommend that “comparisons of the incomes of disabled and non-disabled older people must make adequate allowance for these costs if meaningful inferences about their relative living standards are to be drawn.” Therefore, Berthoud (1991) suggests that these additional costs of caring for the disabled should be borne by the Government so that the caregivers can use their own earned income on purchase their own needs just like others who are not caring for persons with disabilities.

Wang et al. (2010) complain that “without sufficient support to families of people caring for a person with a disability, the families bear most of the costs of disability”, and that the extra cost “has a financial impact on the living standards of [the]families . . . due to the extra costs of addressing the functional disability, leaving less money for purchase of commodities and services.” They note that this “has implications for social policy responsibilities because, without government support . . . people with disabilities and their families are more likely to experience poverty and social exclusion.” They regret that “the implications of the costs of disability have not attracted enough policy

81 attention in China” and add that “policy debates about the impact of the shortcomings of current disability support policies on the rights of . . . people with disabilities and their families remain a low government priority.”

Lai et al. (2009) “show the importance of programs and services that address the financial needs of family caregivers.” Their research reveals that “social workers, helping Chinese-Canadian family caregivers to establish a sound financial foundation to carry out their filial obligation is crucial.” To this end, they advocate that “income assistance or tax relief [and] social work interventions are needed to develop systemic measures” that will facilitate financial aid to persons with disabilities and their caregivers.

Therefore, the Morciano et al. (2012) study concludes that “disabled people experience significant additional costs as a consequence of their disability.” Government policy makers should give due recognition to this in the social security systems “through the provision of benefits designed to compensate for disability-related consumption costs.”

They further advocate that “when carrying out analysis of the distributional impact of tax-benefit reforms, it is crucially important to make some allowance for these additional living costs, since failure to do so would give a misleadingly favourable view of the position of disabled people” (Hancock & Pudney, 2010, as cited by Morciano et al., 2012).

The above review of the literature clearly illustrates that a heavy burden is being placed on sibling caregivers. Whilst appreciating their dedication to provide care for a disabled sibling without placing them in an institution or a home, irrespective of their motivation,

82 we still need to recognise the problems they face, evaluate the obstacles they have to overcome and seek solutions to the difficulties they endure. The literature merely illuminates these problems; evidently a gap exists in terms of solutions. Therefore, to contribute to the literature, this study aims to empirically examine the need for the introduction of tax relief for sibling caregivers as a means of providing them with something of a reprieve. This solution is not new: it forms part of the fiscal policy of our immediate neighbours, Singapore and Thailand. Therefore, as an additional contribution, this study seeks the harmonisation of fiscal policies of countries in the region.

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