Informal care is the dominant mode of helping people with disabilities with their long-term care needs. Throughout the world, policy-makers are concerned about social and economic forces that may undermine the provision of unpaid care and seek ways to shore it up. A major premise of this support is that the disabled individual is usually not alone, but is embedded in a web of family and other relations. (Where disabled individuals are truly alone, their long-term care needs are likely to be especially great.)
Services and other initiatives aimed primarily at informal caregivers rather than the disabled individual include:
education and training; respite care; regulation of business to make it easier for family members to combine work and caregiving; tax benefits and payments to informal caregivers; and provision of pension credits for informal caregiving.These services are designed to increase the level of knowledge and emotional support of caregivers, provide relief from the unending burden of caring for a disabled person, or provide financial benefits to those who take on this responsibility.
Provision of aid to informal caregivers raises a number of difficult issues.
First, should public policy focus on individual persons with disabilities or on the family of people with disabilities? Despite the fact that most long-term care is provided by informal caregivers, almost all public long-term care programmes in industrialized countries consider only the needs of individuals with disabilities and not those of the family in which the individual is situated. In the United States, for example, services that principally benefit the family and not the disabled individual cannot be reimbursed.
Thus, help with the care of the children of disabled adults is not covered. In part this reflects the individualistic character of
industrialized countries; in part it reflects the historical underfunding of long-term care services. It is also a cost containment mechanism since many long-term care services (e.g. housekeeping) have an inherent desirability to people who are not disabled as well as to those who are. The one area where many countries take the family into account is in deciding how much service to provide, with additional informal support leading to reduced formal services. All of this ignores the fact that individuals live within families and that the informal care provided imposes a substantial burden on caregivers.
Second, how can public policy support informal caregivers without monetizing family relationships? Almost all informal care is provided voluntarily independent of any public policy interventions. This is done for a wide variety of reasons, of which a sense of family duty and love are important factors.A key issue for policy-makers is how to support informal caregivers without converting this non-monetary relationship into one dominated by market characteristics where services are only provided if money changes hands. While fear that monetizing family relationships would destroy informal caregiving, there is no evidence that supporting family caregivers will adversely affect how family members relate to one another. Where family caregivers are paid, however, there are questions about whether relatives will be fired if they perform inadequately.
Third, can support for informal caregivers be increased without costs exploding?The great strength of informal caregiving is that there is so much of it; it is the overwhelming source of care in the industrialized world and virtually the only source of care for people with disabilities in the developing world. But that means that the families of virtually all disabled persons in the community might qualify for benefits if provided (subject to financial and income eligibility standards).
Thus, even small benefits provided to large numbers of people (as is being proposed in the United States with tax benefits) will result in substantial expenditures; substantial benefits provided to large numbers of people will result in even larger expenditures. Public spending (or tax loss) can be controlled by making the benefits part of an appropriated programme without an entitlement to benefits, but doing that violates horizontal equity. That is, fairness demands that similarly-situated individuals be eligible for the same benefits, a criterion that is not met if some persons are denied benefits because the money has run out.
Fourth, what does support for informal care mean for the role of women in developing societies?In virtually every way, long-term care is a women’s issue. Because of greater longevity, long-term care is primarily needed by elderly women, and women are overwhelmingly the main providers of both informal and formal care. The fact that women are the primary providers of informal care has led some critics to oppose support for informal caregivers because they see it as a way of forcing women to stay home and out of the workforce. Indeed, Japan consciously chose not to provide for cash payments as part of its social insurance programme for long-term care out of fear that doing so would more tightly tie women to the task of providing informal care (Campbell & Ikegami, 2000). Supporters of aid to informal
caregivers counter that the goal is to create more options for people with disabilities and their caregivers. Moreover, they argue that
the reality is that most disabled people receive their care from women relatives and those caregivers need help.
In sum, as developing countries address the ageing of the population, a major issue is how to balance the provision of paid services with support for informal caregivers. Given limited resources, trade-offs between the two will likely be necessary, but a long-term care policy that ignores informal caregivers neglects the elephant in the room.