The enactment of the Americans with Disabilities Act in 1990 removed a great injustice and has begun to allow persons with disabilities to enjoy their full rights as citizens. Improvements in health have contributed to increased life expectancy and an increasing aging of the population, as well as an increasing survival of children born with disabilities. Americans can look forward to a longer life and, since aging and increasing disabilities are correlated, increased periods of disability. As a society, the United States can expect a growing proportion of its population to have chronic or permanent disabilities.
A characteristic of many persons with disabilities is a need to have personal assistance in order to function. Whether a guide for a blind person, a sign-language interpreter for a person who is deaf, an attendent for someone who is mobility impaired or a caregiver for someone who is severely retarded, persons with severe, chronic disabilities need the services of caregivers. With the increase in the number of persons who are permanently or chronically disabled, through birth, accident or simply aging, the needs for assistance will increase. Little thought has been given to how this assistance is to be provided.
How to provide care and assistance for persons with disabilities will be a major question of social and economic policy in the early twenty-first century and it will be one that cannot be answered by traditional simple solutions based on the family, social security or public welfare. It is a matter of one of Murphy's Laws: for every complex problem there is a simple solution that will not work. The task is to find a more nuanced solution that will work.
This paper is about the caregiver crisis: its causes, its consequences and some approaches to its solution.
More and more people with disabilities
There are no solid figures on the number of people with disabilities. Partly this is because national statistics on incidence are not available and partly a matter of definition. The ADA defines it as "physical or mental impairment that substantially limits one or more of the major life activities".
It is also a matter that there are degrees of impairment involved. Some individuals with impairments can function autonomously in society with minor accomodations. For example, a person who has lost a leg or an arm can function autonomously with a prosthesis. Others, however, can function only with assistance, part- or full-time. An elderly person may be able to function independently in her house but may need someone to drive her to market. A person with severe mobility impairments, such as quadraplegics, may need almost full time attendents. The issue of caretaking turns on those persons with disabilities that need assistance.
According to the Census Bureau, 19 percent of the United States population in 1993 had a disability amounting to some 48 million persons. Half of these had severe disabilities.
On the basis of its Survey of Income and Program Participation (SIPP), the United States Census Bureau has estimated that there were 8.7 million persons who needed assistance in 1993.
What is clear is that the number of these persons in the population is growing faster than the rate of population growth and therefore the proportion is growing. There are clear projections on population. The Census Bureau estimates that by 2010, some 12 million persons (4 percent of the population) will be 80 or older, compared with 6 million in 1996. Since disability is strongly correlated with older age, this will affect disabililty needs.
It can be estimated that early in the next century, one out of every X [number to be provided] Americans will need part- or full-time personal assistance, compared to one out of every Y Americans in 1990.
Caretaking can be provided by the family, by the private sector, by the community or by the State. None of these will really work as they are now configured.
The family: no shelter any more
Throughout history it has fallen to the family of the person with disabilities to provide care. A family member (or members) undertook to provide the care of another. In the extreme case represented by the Mexican family portrayed in Laura Esquivel's Like Water for Chocolate, the youngest daughter's pre-ordained role is to provide care for her mother in her old age. Wealthier families in Victorian England might provide a companion, in the form of a genteel, but impoverished spinster. Wealthier families in developing countries would hire maids for the task. None of these are really feasible except for the very rich.
A consequence is that the care-provider drops out of the labor market in order to devote time to care.
As household size decreases, geographical mobility increases and the need for every adult in the household to earn wages increases, the cost of providing care will escalate.
Households where a member has to drop out of the labor force to provide care will become increasingly impoveished. This has economic effects, not only on the affected household, but on the economy as a whole in the form of reduced consumption and savings.
Insurance: no easy choice
The medical costs of disabling illness are often covered by insurance, although this too is becoming questionable. Disability based on chronic illness often involves running out of insurance as plan limits are reached. Pre-existing conditions become a grounds for refusal of insurance. More importantly, insurance usually will not cover long-term care except in an institutional environment and provision of personal assistance at home is not covered at all.
Group health insurance is usually job-related. If family members have to leave the labor force to give care, they will lose their insurance coverage in any case. The burdens of health insurance premiums will become greater.
Social security: bankrupting the future
The disability part of the social security system is one of those under most severe strain. In order to achieve actuarial balance, the tendency is to reduce coverage rather than increase it. Similarly, the threat to medicare and medicaid is being met by efforts to increase premiums and reduce coverage. In a situation where the needs of persons with disabilities are increasing, this is counter-productive.
Welfare: no out here
For families whose incomes have plummeted, welfare has been the traditional safety net. Ironically, it is easier to receive public support for care-giving when a family is poor than when it is not. Programs for the poor elderly have been a feature of the American welfare system for a century. The trend has been to seek means to reduce the welfare case load by finding remunerated employment for many of its beneficiaries.
The dilemma of care-giving where family members leave the labor force to provide support to their members with disabilities is that it will increase the welfare case load.
The question is how to provide the care necessary to permit persons with disabilities to exercise their rights while contributing to the economic growth of the country. The solution to the caregiver crisis rests with all of the current providers, at least for finance, but it centers on the caregivers themselves.
Who are the caregivers?
Family members apart, caregivers are lower-paid persons. In a society where status is based on wealth, caregivers are often lower-status. Just as has been found in the area of child-care, personal assistants provide an essential function but are not compensated for it.
The dilemma with raising salaries on the basis of the higher the pay, the higher the status, is that this makes it less likely that most families to afford outside care-givers.
There are few statistics about the characteristics of persons whose job is to give care to persons with disabilities. [Add any statistics that exist.] There is little question, however, that they constitute an important and growing segment of the service sector.
Upgrading the status of caregiving
In some societies, provision of care is highly valued for itself. It is a respected vocation, where the compensation is often in the form of a non-material status conferred by society. The vocation of service is considered, in those societies, higher than many professions that pay more.
There is little evidence that caregiving is given clear value in American society today, although there is some that in the past it had that characteristic. In frontier America, for example, doctors were given respect but often little money and yet people entered the medical profession out of vocation. Priests and pastors also are given respect, but relatively little money, and many people seek that profession.
Given a basic level of income, respect and status can substitute for income.
Care-giving in itself involves a certain amount of self-abnegation. The care-giver must subordinate her or his own desires to those of the person being given care. It is a taxing profession, where the rewards are usually indirect. It deserves respect.
Upgrading the status of caregiving involves a societal reflection on its value, reinforcement by the mass media and in the schools.
Increasing the training of caregivers
Care-giving is not an easy vocation. It has its own psychological dynamics and, depending on the disabilities of the person given care, has technical demands as well. Caregivers can benefit from training.
The easier part of training is technical: how to lift someone, hygiene, diet. But perhaps more important is training to confront the psychological dynamics involved, the nature of dependency, coping with anger (of the care-giver and of the person given care).
A life-course approach to caregiving
Since every family and every individual can expect to need or give care, it is in their interest to prepare for this. Preparation means, as a minimum, an understanding of the phenomenon, but it can also mean planning for financing care (a program of set-asides as part of social security), training in caregiving (and its value) as part of education.
A community role
America in the last years of the Twentieth Century is trying to re-discover community, the sharing of burdens and of rewards by all of the people living in the same place. Whether through devolution of political responsibilities, redirection of tax revenues or encouraging "a thousand points of light", public policy has sought to shift the emphasis on service-provision to the community.
Ensuring that each community can and will look after its own is one approach to solving the care-giving crisis. But it has to be seen in a more nuanced context. Sharing a burden means that each component, the family itself, the community and the larger State needs to have a clearly defined role and responsibility. Defining these roles and responsibilities is a challenge to policy makers as the new century dawns.
Self-supporting assistance
There is a curious feature to the economics of caregiving: no cost/benefit
analysis of care is usually done. Yet, many persons with disabilities,
if given assistance can (and should) be part of the labor force. To an
extent, if they earn more than the cost of assistance and are part of a
larger household or community, they, in effect can pay for the assistance
while, at the same time, generating a multiplier effect in the economy.
This has yet to be explored in depth.