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Ethical principles and American public policy on disability.

Three ethical principles (e.g., autonomy, beneficence, and justice) that have influenced the shape of American public policy on disability are discussed, and the counterproductive imbalance between two of those ethical principles in disability policy (e.g., autonomy and beneficence) is explored. The fair opportunity rule of justice is defined and the effect of attitudes concerning the capability of persons with disabilities on the expression of the fair opportunity rule for persons with disabilities is discussed. The relationship between public perception of the capability of persons with disabilities to participate in community life and the expression of ethical principles in disability public policy is explored. The need for a capability-autonomy disability public policy perspective is presented, and recommendations, consistent with that perspective, directed at achieving the goals of current rehabilitation public policy are put forth.

American thought that has shaped disability policy has been strongly influenced by three ethical principles that are greatly valued by the American public. These principles are:

Beneficence- to do good for others, to take actions that promote the well-being of others (Beauchamp & Childress, 1983).

Autonomy- respect for the individual's rights to freedom of tion ("as long as it does not interfere with similar freedoms of others ") and freedom of choice (Kitchener, 1984, p. 46).

Justice- "treating persons fairly, which implies treating equal persons equally and nonequal persons differently if the inequality is relevant to the issue in question " (Welfel, 1987, p. 10). Justified distribution of the benefits and burdens of society (Beauchamp & Childress, 1983).

It could be hypothesized that since Americans strongly value compassion, freedom, and fairness, they will find acceptable any public policy on disability that clearly reflects the ethical principles of beneficence, autonomy, and justice. Therefore, it is no surprise to find these principles manifested in the purposes of the programs authorized by the disability legislation. Programs such as Rehabilitation, Social Security Disability Insurance (SSDI), and Supplemental Security Insurance (SSI) are all directed at promoting the well-being of persons with disabilities (beneficence driven). They also represent attempts to provide a just allocation of resources to meet the needs of persons with disabilities Oustice driven). Finally, while rehabilitation does so more than SSI or SSDI, they all are to some degree directed at promoting the independence of persons with disabilities (autonomy driven).

A Counterproductive imbalance Between the Principles of Beneficence and

Autonomy in the Public Policy on Disability

The current public policy on disability appears to be more beneficence than autonomy driven. This is most clearly evidenced by the great discrepancy between the level of public support provided for income maintenance and rehabilitation programs for persons with disabilities. Rogers (1987) has estimated that "public and private disability transfer payments (that is, cash payments made to compensate individuals for their disability) made to persons aged 18-64 reached $70.6 billion... in 1981 (p. 117)." On the other hand, less than 2 billion dollars was appropriated for the state-federal rehabilitation program for FY 1986 (National Council on the Handicapped, 1986). The imbalance between the two figures suggests that the American public may not believe that the full participation of persons with disabilities in American society is possible. The large difference in the funding for the two areas suggests that persons with disabilities are paternalistically perceived as a population of "deserving poor" with minimal capacity for self-support and independence (Erlanger & Roth, 1985; Hahn, 1982, Scotch, 1984). Consequently, most public money available for meeting the needs of persons with disabilities is directed toward beneficence driven income maintenance transfer payment programs rather than toward autonomy oriented habilitation/ rehabilitation programs.

The coexistence of income support and rehabilitation programs is clearly necessary. Both "should always be available to severely disabled persons in need" (Rubin, Garcia, Millard, & Wong, 1988). However, these two parts of the current public policy on disability operate in philosophically incompatible ways. One part, that being beneficence driven paternalistically oriented income maintenance programs, reinforces dependency and encourages many persons with disabilities to demonstrate an inability to ever obtain satisfactory work (Walls, Zawlocki, & Dowler, 1986). Income maintenance programs also produce disincentives to work by creating a situation in which the recipient's income may likely decrease upon entering employment (Conley, Noble, & Elder, 1986; Walls et al., 1986). The other part of the public policy on disability, that being autonomy driven independent living and vocational rehabilitation programs, encourages a self-perception by persons with disabilities of employability and potential economic self-sufficiency. As a result, a major internal philosophical conflict exists in the current public policy.

The Principle of Justice and the Public Policy on Disability

The statement of purpose in the Rehabilitation Act of 1973 as amended in 1986 by P.L. 99-506 mandates the provision of independent living and vocational rehabilitation services for individuals with handicaps necessary "to maximize their employability, independence, and integration into the workplace and the community" (p. 1808). While this is a noble goal, it cannot be achieved for the majority of persons with severe disabilities in an environment pervaded by unjust structural and attitudinal barriers, and given the insufficient current level of funding for independent living and vocational rehabilitation services.

The fair opportunity rule under the principle of justice states that no persons should be denied the benefits generally available to members of a society, such as the right to participate fully in the social, cultural, and political aspects of community life, because of handicapping characteristics involuntarily acquired (Beauchamp & Childress, 1983). This rule allows us to consider the unequal distribution of economic resources in some situations as just. For example, the fair opportunity rule can be invoked to support the provision of publicly supported comprehensive and expensive services to individuals with severe disabilities. Utilizing large amounts of public funds to meet the comprehensive rehabilitation needs of these individuals is justified on the basis of it being necessary to provide them with a fair opportunity to achieve a reasonable quality of life.

Despite the fair opportunity rule, controversy exists concerning whether or not large amounts of public funds should be allocated to provide an accessible environment for persons with disabilities. Although the American public is likely to support equal access to the environment in theory, in reality it appears to be unwilling to allocate a large amount of the finite public funds for environmental modifications perceived to only benefit a small minority (Allen & Muchinsky, 1984). Therefore, sufficient public financial support for environmental modifications is dependent on a belief that such investments of public resources will have broader benefit. Such a belief is greatly dependent on persons with disabilities being perceived as capable of making a contribution to their communities. If persons with disabilities are seen as capable of making a contribution to society then the question is not, can we afford to remove environmental barriers for the benefit of persons with disabilities, but rather, what is the best way to remove them for the benefit of both persons with disabilities and society as a whole?

Turning to the problem of insufficient funding for independent living and vocational rehabilitation services, it has been estimated that close to I million persons with disabilities are served annually by state rehabilitation agencies with their $2 billion pool of funds (National Council on the Handicapped, 1986). The inadequacy of this appropriation can be demonstrated by thinking about converting to a voucher system. If this $2 billion pool of money were distributed equally among the I million persons served annually, each individual would receive a voucher for approximately $2,000 with which to purchase services in order to maximize his/her "employability, independence and integration into the workplace and the community" (Rehabilitation Act Amendments of 1986, p. 1808).

The challenging nature of this funding situation for the rehabilitation service charged with carrying out the mandate in the rehabilitation legislation can be illustrated by looking at the cost of vocational rehabilitation for a hypothetical but realistic case, the case of Ralph.

Ralph is a 29-year-old rehabilitation client with C-7 quadriplegia living in an inaccessible trailer in a rural area with no public transportation. He currently uses a manual wheelchair for mobility. He can only access the living room and kitchen area of his home. He lives with his father who is retired and has emphysema. Ralph has a vocational objective of computer programmer and has been accepted in a local community college 10 miles from his home.

To enable Ralph to have fair opportunity to participate in community life, it is likely that the rehabilitation service would have to provide the items and services outlined on Table 1. In this case, to enable Ralph to have accessible housing and transportation, and the opportunity to obtain an education, approximately $50,000 in expenses will be incurred. (Cost estimates on Table 1 can be expected to vary, depending on the part of the country in which Ralph resides). Given the current funding level for rehabilitation, for how many Ralphs can the state federal rehabilitation program maximize "employability, independence, and integration into the workplace and the community"? (Rehabilitation Act Amendments of 1986, p. 1808).

Conclusion

The manner in which the principles of beneficence, autonomy and justice are expressed in public policy is greatly shaped by public perception of the capability of persons with disabilities to participate in employment and other aspects of community life. In general, persons with disability are viewed as incapable of providing for themselves, or of functioning independently in the community (Hahn, 1987). Those persons with disabilities who succeed in providing for themselves and function independently are likely to be viewed as exceptional people. As long as most persons with disabilities are viewed as incapable of self-sufficiency or of playing a meaningful part in community life, the majority of the resources allocated for their needs will not be spent to promote their independence. Viewing persons with disabilities as incapable of participating in community life provides a rationalization for not spending the large sums of money necessary to remove environmental barriers. Operating from this perception of "helplessness or hopelessness," allocating most resources for the disability population for income maintenance programs would be both reasonable and beneficent. Justice does not require a society to provide people with support for the opportunity to try to achieve the impossible. A public policy directed toward that end would likely be viewed by many people as wasting public funds. However, if persons with disabilities are seen as capable of playing a meaningful part in community life, and that participation is being unfairly precluded by attitudinal and environmental barriers, as well as the current structure of our public policy , we are bound by the fair opportunity rule to make things more just.

Acceptance of a capability-autonomy perspective allows the principles of autonomy, beneficence, and justice to support the types of public policy changes suggested by the National Council of the Handicapped (1986) as necessary for achieving the mandate of the Rehabilitation Act of 1973 as amended in 1986. For example, the National Council on the Handicapped (1986) has recommended the following changes concerning disincentives to work and transportation:

Congress should amend the Social Security Act to assure that SSI and SSDI recipients who become gainfully employed are permitted to retain benefits and have access to medical insurance in circumstances where the loss of such benefits would substantially negate the income they might earn (p. 33). Congress should amend Section 16 of the Mass Urban Transit Act to require full accessibility to mass transportation to be achieved over a realistic period of time (p. 33).

If we accept the idea that persons with disabilities are capable of meaningful participation in community life then the question arises, does our public policy on disability allocate sufficient funds to provide persons with disabilities with a fair opportunity to acquire, the education, transportation, housing, individualized independent living support, and employment services that would be considered necessary for maximizing their autonomy? Without expanding the resources allocated to meet the needs of persons with disabilities, it is unlikely that our society will be in compliance with the fair opportunity rule for persons with disabilities.

References

Allen, J.S., & Muchinsky, P.M. (1984). Assessing raters' policies in evaluating proposed services for transporting the physically handicapped. Journal of Applied Psychology, 69(1), 3-11.

Beauchamp, T.L., & Childress, J.F. (1983). Principles of biomedical ethics (2nd ed.). New York: Oxford University.

Conley, R.W., Noble, J.H., & Elder, J.K. (1986). Problems with the service system. In W.E. Kieman & J.A. Stark (Eds.), Pathways to employment for adults with developmental disabilities pp. 67-83). Baltimore: Paul H. Brookes.

Erlanger, H., & Roth, W. (1985). Disability policy: The parts and the whole. American Behavioral Scientist, 28, 319-345.

Hahn, H. (1982). Disability and rehabilitation policy: Is paternalistic neglect really benign? Public Administration Review, 42, 385-390.

Hahn, H. (1987). Civil rights for disabled Americans: The foundation of a political agenda. In A. Gartner, & T. Joe (Eds.), Images of the disabled, disability images (pp. 181-203). New York: Praeger.

Kitchener, K.S. (1984). Intuition, critical evaluation and ethical principles: The foundation for ethical decisions in counseling psychology. The Counseling Psychologist, 12(3), 43-55.

National Council on the Handicapped. (1986). Toward independence: An assessment of federal laws and programs affecting persons with disabilities-with legislation recommendations (ISBN 0-936825-00-6). Washington, DC: U.S. Government Printing Office.

Rehabilitation Act Amendments of 1986, Pub. L. No. 99-506, 100 Stat 1808.

Rogers, C. (1987). The employment dilemma for disabled persons. In A. Gartner & T. Joe (Eds.), Images of the disabled, disabling images (pp. 117-127). New York: Praeger.

Rubin, S.E., Garcia, J., Millard, R.P., & Wong, H.D. (1988). Preparing rehabilitation counselors to deal with ethical dilemmas: A major challenge for rehabilitation counselors. In S.E.

Rubin & N. Rubin (Eds.), Contemporary challenges to the rehabilitation profession (pp. 303-315). Baltimore: Paul Brookes.

Scotch, R.K. (1984). From good will to civil rights. Philadelphia: Temple University.

Walls, R.T., Zawlocki, R.J., & Dowler, D.L. (1986). Economic benefits as disincentives to competitive employment. In F.R. Rauch (Ed.), Competitive employment issues and strategies (pp. 317-329). Baltimore: Paul Brookes.

Welfel, E.R. (1987). A new code of ethics for rehabilitation counselors: An achievement or a constraint? Journal of applied Rehabilitation Counseling, 18(4), 9-11.
Received: December 1988
Revised: June 1989
Accepted: July 1989


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Author:Millard, Richard P.
Publication:The Journal of Rehabilitation
Date:Jan 1, 1991
Words:2359
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