The Effect of Recent Socioeconomic Changes

The socioeconomic changes in China since 1978 have had a major effect on every aspect of life. Strategies used by families to manage disability have had to adapt to this new socioeconomic environment. Overall, the decreased availability of free health care, the increased competitiveness of employment, and the trend toward increased personal autonomy have made it more difficult for families to adjust successfully to the disability of a family member. But the large urban areas have seen some developments that, if extended to the rest of the country, will lighten the burden for the families of the disabled.

Availability of Health Care

The significantly reduced numbers of urban residents entering state-sector jobs has resulted in a decrease in the proportion of the urban population that receive free health care.^[28] Moreover, my own data show that many state firms are decreasing their expenditures for health care by tightening eligibility criteria for health benefits or by increasing the proportion of copayment by the user. With the economic retrenchment of the last two years some smaller firms have been unable to pay for the health care of their employees, who must now cover these expenses themselves. At the same time the pressure for health institutions to become efficient and profitable has resulted in a rapid increase in the costs of treatment^[29] —over the last two years the average cost of a two- to three-month psychiatric hospitalization has increased from 500 yuan to 1,000 yuan. The overall effect of these changes is to make health care less available and less equitable. Since disabled persons are high utilizers of health services who are unlikely to have state-sponsored health insurance, they are severely affected by these changes.^[30]

The decreased accessibility to health care is changing families' strategies for the management of disabled family members. Families in which the patient nominally has full medical benefits must be more active in dealing with the patients' workplace to overcome the bureaucratic barriers that enterprises are erecting to limit their health care expenditures. An increasing proportion of families with uninsured, disabled family members are simply unable to afford medical care, so they try to maintain the patient in the home or seek out other, less expensive, interventions. In the case of uninsured schizophrenic patients, most families pay for the first hospitalization in the hope that this will lead to a full remission; but when they realize that hospital treatment is palliative not curative, they are less likely to have the patient hospitalized a second time or, if the patient is rehospitalized, may demand the earliest possible discharge. Some psychiatric hospitals have recently opened "observation wards" where family members provide all the nursing care for the patient during a brief seven- to ten-day admission; this

[28] My own data show that 25 percent of urban residents who get admitted to a psychiatric hospital have no medical insurance. The central government is aware of the magnitude of the problem, but there are, at present, no visible changes at the grass-roots level: "All Chinese to Enjoy Health Care by the Year 2000," China Daily , 8 September, 1990, 1.

[29] G. E. Hendersen, E. A. Murphy, S. T. Sockwell, J. L. Zhou, Q. R. Shen, and Z. M. Li, "High-technology Medicine in China: The Case of Chronic Renal Failure and Hemodialysis," New England Journal of Medicine 318, no. 15 (1988): 1000-1004.

[30] The government is aware of these problems and has allocated 30 million yuan per year (for the five-year period starting in 1989) to provide treatment for various disabilities: "Major Programme to Aid the Disabled," China Daily , 1 December 1988, 3. This degree of support will have little effect on the problem.

is a less-expensive option, which economically limited families with severely disturbed patients may be obliged to select.

Employment

Economic retrenchment and unemployment have resulted in an increasingly competitive job market that tends to exclude those with marginal employability—the disabled. It is now much more difficult for urban families to obtain a secure state-sector job for their disabled family member. Lacking the connections to arrange such a position, many families must either settle for jobs in collective or private enterprises that provide limited (if any) social security benefits or give up entirely on trying to find employment for their disabled family member.^[31]

For disabled persons who have obtained employment or who were employed at the time of onset of their disability, the new responsibility system has increased the pressure to perform up to expected standards. Several of my patients who have regained their work skills following a psychiatric hospitalization are unable to return to work because their fellow workers do not want to accept someone whose inferior performance might affect the productivity bonuses of all. Many firms now require persons who take leave for psychiatric treatment to undergo a complicated evaluation process before returning to work. Economic pressures have caused some enterprises to decrease the time ill workers are paid 100 percent of their salary (usually six months) and to reduce the amount of disability payments (usually 60 to 80 percent of the previous salary) paid to workers who become officially "disabled." Thus the right to continued employment and social welfare benefits is no longer guaranteed; to safeguard these rights, families with a disabled member must now be much more active in their negotiations with the leaders of the patient's workplace.

One positive change has been the development of welfare enterprises and factories that employ varying numbers of disabled persons. These enterprises are either fully under the supervision of the Ministry of Civil Affairs (which administers most of the state welfare programs) or are state or collective enterprises that are given tax incentives if 30 to 50 percent of their workers are disabled persons. As of March 1988 there were 24,000 such enterprises that hired 395,000 disabled persons;^[32] but demands for increased economic efficiency have threatened many of these sheltered workshops with closure.^[33] Unfortunately, very few of these enterprises are willing to hire persons with mental disorders.

[31] A draft law on the protection of the handicapped that is currently under consideration by the State Council should, eventually, make it easier for families to obtain employment for their disabled members: "Law for Handicapped Ready for Discussion," China Daily , 4 September 1990, 3.

[32] "Rural Handicapped Need Special Help," China Daily , 17 March 1988, 3.

[33] "Deng Pufang Appeals for Help," China Daily , 22 March, 1989, 3.

Changes in Social Values

The increased cost of health care and the decreased ability of the disabled to obtain employment with social security benefits is increasing the economic burden of disability for the family. At the same time, the reforms have enhanced the importance of economic factors in the determination of social status in Chinese society, and so families with disabled members now find it more difficult to improve or even maintain their social status. Several of the families I treat have not bought such items as televisions, refrigerators, or washing machines, because of the expenses incurred for treatment of their ill family member or because they feel that they must save for the economic security of the patient.

Exposure to the West is slowly enhancing the value placed on independence and personal autonomy and diminishing the value placed on responsibilities within the extended family;^[34] as these new values become more firmly established, adult disabled persons will be less willing to be chronically dependent on their family, and family members will feel less morally obligated to provide lifelong support for the disabled individual. In my own clinical work there are several cases in which patients have been divorced by dissatisfied spouses or chronically hospitalized by families; it is my impression that such cases, though still uncommon, are on the increase. Lin and Lin report that rejection of seriously mentally ill family members is a common final outcome in Chinese families living in Westernized societies.^[35] The socioeconomic changes currently in progress in mainland China may produce a similar outcome; if this occurs, there will be increasing pressure on the state to build more chronic-care facilities for the mentally ill.

Destigmatization

One change that may decrease the rate of rejection of disabled members from households is the official recognition and destigmatization of disabilities. The election of Deng Xiaoping's paralyzed eldest son, Deng Pufang, as chairman of the Disabled Persons' Federation of China and his frequent efforts to publicize the plight of the disabled and to change government policy on their behalf have helped to demystify disabilities, to focus public attention and resources, and, most important, to lighten the burden of guilt and shame that the families with disabled members bear.

Progress in decreasing the stigmatization of mental illnesses has been slower than with other disabilities, but there has been some progress. The most visible sign that psychiatry has finally moved out from the shadows was that the opening banquet of the 1988 meeting between the American

[34] A. Y. King and M. H. Bond, "The Confucian Paradigm of Man: A Sociological Perspective," in Chinese Culture and Mental Health , ed. W. S. Tseng and D. Y. H. Wu, 29-45 (London: Academic Press, 1985).

[35] Lin and Lin, "Love, Denial and Rejection."

Psychiatric Association and the Chinese Psychiatric Association was held in the Great Hall of the People. The recent development of counseling centers, crisis intervention centers, child behavior clinics, telephone hot lines, parenting training classes, and so forth in the large urban areas indicates an increased awareness of the importance of psychological factors.^[36] A spin-off effect of this psychologization of the urban intellectuals is that mental illnesses are demystified; they are seen as extreme manifestations of the psychosocial stressors that are experienced by all. It is unclear how quickly and how extensively this new "popular" view of mental illness will infiltrate the public consciousness, but as it does it will relieve some of the guilt and shame experienced by the families of the mentally ill, who will then be more willing, presumably, to utilize available services. In my own clinical work with urban families, an increasing proportion of families identify social stressors as the primary etiology of schizophrenia; this may be an early indicator of the "psychologization" of mental illnesses in China.

Demographic Transition

One other factor that is affecting the strategies of families with disabled members is the decrease in family size. With smaller families more functional roles must be assigned to each individual, and so the loss of one family member through disability has a greater effect on the family. Single-child families in which an unmarried child develops a serious disability are particularly hard-pressed: there is no one who can assure the security of the parents in their old age, and there is no sibling who can assume responsibility for the disabled child when the parents die. If the parents are unable to find a spouse for their disabled child, they may seek the assistance of their extended families in providing for their own and their child's future, but in most cases the child will become a ward of the state when they die. The numbers of such cases will inevitably increase as the family size decreases.