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Ethical dilemmas encountered by Independent Living Service Providers.

Emergence of the independent living paradigm indicated that the perceptual problem of disability is attributable to the environment and societal values, rather than within the person with a disability. Solutions to consumers' problems/needs focus on peer counseling, advocacy, consumer control and the removal of architectural barriers. The desired outcomes in independent living are enhanced choices in life (e.g., living arrangements, assertiveness, mobility, and community activity) (DeJong, 1979).

Hahn (1984) indicated there is a changing perception of disability from a "functional limitations model," emphasizing improving the person to cope with the environment, to a "minority group model," emphasizing that disability is the product of interaction between the environment and the person. Consequently, conflicts in the field of rehabilitation stem from civil rights issues, prejudice, discrimination, and public policy.

Under the Rehabilitation Act Amendments of 1986 (Public Law 99-506) persons accepted for independent living services must meet the following eligibility criteria: (a) a physical and/or mental disability posing a substantial handicap to independence or community integration and (b) a reasonable expectation that the client will benefit from services to achieve independence or community integration.

Individuals employed in centers for independent living delivering services directly to persons with disabilities (e.g., one-to-one or one-to-a-group) may have a wide range of occupational titles. For the purpose of this article, these persons are called independent living service providers (ILSPs). The roles of ILSPs include: (a) referring, (b) counseling, (c) advocating, (d) transporting, and (e) personal assistance. Therefore, services may include, but are not limited to: (a) attendant referral, (b) peer counseling, (c) housing assistance, (d) benefits counseling, (e) legal and/or personal advocacy, (f) transportation, (g)job development, (h) financial counseling, (i) special services for persons who are deaf and/or blind, (j) vehicle repair/modification, (k) assistance training, and (l) substance abuse counseling (Rubin & Roessler, 1983, p. 211-212).

Parham, Hart, Newton, and Terraciano (1983) indicated that conflicts in independent living service delivery are attributable to professionals' perceptions, programs' missions, and funding sources antithetical to the consumer's choice. Persons in the independent living movement often state "dissatisfaction with the dependence fostered through actions of primary care personnel ... or autocratic service providers" (Budde, Petty, Nelson, & Couch, 1986, p. 69). Secondly, paternalism is an issue whereby ILSPs may view the consumer's goals as inappropriate or limiting.

Such conflicts in service delivery create ethical dilemmas for ILSPs. Unfortunately, a paucity of research exists describing variables impacting upon independent living programs (Nosek, Roth, & Zhu, 1990) as well as ethical dilemmas encountered by ILSPs. Secondly, little information is available in the literature regarding ethical dilemmas or the need for ethics training as perceived by this group of service providers. Although Geist (1980) stated philosophical issues related to nonvocational goals as an ILSP training need, the low frequency of staff training in independent living programs is a major concern (Nosek et al., 1990).

Concept of an Ethical Dilemma

An ethical dilemma is a situation whereby a person encounters: (a) a choice between two rationally defensible courses of action, (b) actions supported by one or more ethical principles, and (c) actions having potential significant consequences (Harding, 1985; Purtilo, 1983).

These ethical dilemmas may involve conflicts between any two or among several ethical principles: (a) autonomy, (b) beneficence, (c) fidelity, (d) justice, and (e) nonmaleficence (Beauchamp & Childress, 1983). Autonomy means respecting a consumer's choice and his/her right to self-determination. Beneficence means promoting the growth, well-being, and/or legitimate interests of others. Fidelity means adhering to obligations to others (expressed or implied) and abiding by rules or regulations. Justice means being fair, rendering to others that which is due, and the equitable allocation of resources. Nonmaleficence means avoiding intentional harm to others.

Few ethical dilemmas have been systematically identified in the literature, as well as the perceptions of the need for training to address these dilemmatic situations by ILSPs. Therefore, the purpose of this article is to identify the types of ethical dilemmas encountered by ILSPs and their perceptions of the need for training to address these dilemmas. Hopefully, these results will begin to fill that void in the literature.

Specifically, the following research questions were addressed:

(1) What ethical dilemmas do ILSPs report encountering?

(2) What degree of importance do ILSPs perceive for the development of effective training materials to prepare them to deal with each of those dilemmas?

Methodology

Sampling Method

Fifty-five Independent Living Centers were identified with assistance from the Rehabilitation Service Area (RSA) Regional Offices in Chicago, IL and Denver, CO. A letter was sent to 55 Independent Living Center Directors in (RSA) Regions V and VIII requesting a list of ILSPs having at least one year or more work experience in their current occupation. Region V includes the states of Ohio, Illinois, Indiana, Michigan, Minnesota, and Wisconsin. Region VIII includes the states of Colorado, Montana, North Dakota, South Dakota, Utah, and Wyoming. The sampling pool resulted in a list of 79 ILSPs from Region V and 28 ILSPs from Region VIII for a total of 107 ILSPs. All 107 ILSPs were mailed the Rehabilitation Ethical Dilemma Survey (REDS).

Instrument Development

The REDS was developed through a multistage process for this study and contained 38 ethical dilemmas. A comprehensive description of that process can be found in Wong (1990). Interviews with 15 ILSPs were conducted to discern the types of ethical dilemmas they experienced in service delivery. Format of the interview included open-ended questions such as "What ethical dilemmas have you experienced in the area of (a) referral, (b) service provision, (c) case closure, and (d) follow-up?" Upon completion of all interviews and review of the literature, the data were interpreted for the purpose of constructing the ethical dilemmas. Each dilemma selected met the definitional criteria of an ethical dilemma as previously stated and was reviewed for clarity by an ethicist from the Department of Philosophy, and a professor and a doctoral candidate from the Rehabilitation Institute at Southern Illinois University-Carbondale (SIU). A total of 75 ethical dilemmas were originally generated. However, after several reviews, a total of 38 were finally included in the instrument. Those which were not included were due to the dilemmas being redundant or not meeting the criteria.

The dilemmas were then reviewed by two doctoral candidates and two ethicists from the Department of Philosophy at SIU to validate and obtain consensus on the competing ethical principles for each dilemma, as well as identification of dilemmas that were ambiguous. Several reviews were required before consensus of the competing ethical principles for each dilemma was reached. The survey dilemmas were also reviewed by three independent living center directors in which they were asked to rate each dilemma in terms of: (a) how likely ILSPs would perceive each dilemma as containing two conflicting courses of action, (b) each action being mutually exclusive, and (c) each action having potential significant consequences. Upon completion of theft review, analysis by the researcher, and final review by the ethicists, all 38 dilemmas were retained for the survey.

A mini-field test was conducted with two ILSPs for the purpose of completing the survey, followed by a personal interview to identify any instructions or items that were ambiguous, misspelled words, or other problems.

Data Collection

The final survey was mailed to members of the sample who were asked to rate each dilemma on two scales in terms of incidence in which they encountered the dilemma in their work (i.e., 1 = never, 2 = once a year, 3 = once every six weeks, 4 = once a month, or 5 = once a week) and how important it is to develop effective training materials to deal with each ethical dilemma (i.e., 1 = not important, 2 = somewhat important, 3 = important, 4 = moderately important, or 5 = very important).

TABULAR DATA OMITTED

A follow-up post card was mailed two weeks after the initial mailing and a second survey copy with a reminder letter was mailed four weeks after the initial mailing to nonrespondents.

Results and Discussion

Demographic Traits of ILSPs

A total of 39 usable surveys were returned from the 107 ILSPs in the sample for a return rate of 36.4%. Approximately 72% of the respondents were female. About 64% had three or more years of work experience. Approximately 28% held Master's degrees and 43% held Bachelor's degrees. Approximately 79% of the respondents were from Region V. Approximately 46% of the respondents ranged between 25-34 years of age, while 33% ranged between 35-44 years of age. Overall, 94% of the respondents ranged between 24-54 years old. Ninety-four percent of the respondents were Caucasian.

Ethical Dilemmas Encountered by ILSPs

All 38 ethical dilemmas on the REDS were encountered by ILSPs. Table 1 shows 21 dilemmas encountered by 50% or more of the responding ILSPs and the frequency with which each dilemma was encountered. Additionally, Table 1 also designates the perceptions of ILSPs regarding the development of training materials for each dilemma (Scale 2). As noted in Table 1 by asterisks, 10 of these ethical dilemmas were encountered by 75% or more of ILSPs at least once a year (i.e., 1, 2, 10, 16, 17, 18, 19, 20, 30, and 32). Six of these involved conflict between autonomy and beneficence (i.e., 1,2, 16, 17, 18, and 20).

As can be observed on Table 1, the three most frequently encountered ethical dilemmas by ILSPs (i.e., 16, 18, and 20) involved conflict between the ethical principles of autonomy and beneficence. Although this appears to be congruent with independent living philosophy emphasizing consumer control, consumer choice, and self-determination, there are dilemmatic situations of concern for ILSPs. Ethical dilemma number 16 involved intervening to meet health care and safety needs of the consumer as requested by the consumer's friend conflicting with adhering to the consumer's request to respect his/her privacy. Ethical dilemma number 18 involved supporting a consumer's choice of services conflicting with providing services that can increase the consumer's potential. This type of dilemmatic situation was suggested by Parham, Hart, Newton, and Terraciano (1983) whereby the ILSPs' perceptions of optimal services differed from the consumer's choice. Ethical dilemma number 20 involved concurring with a consumer's decision to reside with his/her aging parents conflicting with preparing the consumer to live independently outside a sheltered housing environment. This is consistent with findings by DeJong (1979) which suggested that living arrangements and community activities are a major outcome of the independent living paradigm.

An implication of encountering these types of dilemmas suggests that ILSPs respect consumer autonomy in the service-delivery process. Consequently, ILSPs will find it necessary to exercise counseling and decision-making skills as they explore options with consumers in major life decisions. These counseling and decision-making skills could be practiced during pre-service and in-service training whereby participants explore ethical dilemmas and role play with consumers.

Ethical Dilemmas for which ILSPs Requested Training

All 38 ethical dilemmas were rated by at least 75% of ILSPs (item 11 was the exception at 74.3%) as somewhat important or higher. The four most highly requested ethical dilemmas by ILSPs for training included dilemma item numbers 1, 18, 19, and 20 with underlying themes of respecting consumer choice conflicting with maximizing consumer potential, safety, or financial security. Of these 38 dilemmas, a total of 25 involved conflicts between beneficence and autonomy (i.e., 1, 2, 3, 5, 15, 16, 17, 18, 20, and 27), beneficence and fidelity (i.e., 9, 10, 11, 22, 24, 25, 26, 28, 29, and 33), or beneficence and justice (i.e., 8, 32, 34, 35, and 37). An additional nine dilemmas involved conflicts between nonmaleficence and autonomy (i.e., 19, 23, 31, and 38), nonmaleficence and beneficence (i.e., 6, 13, and 14), nonmaleficence and justice (i.e., 36), or noumaleficence and fidelity (i.e., 30). Additional dilemmas for which training was requested by 75% or more ILSPs are designated in Table 2.

Table 2

Ethical Dilemmas for which Training was Requested (in descending order)

8. Providing an employer with all requested consumer information conflicts with serving as an advocate for the consumer in the job placement process.

5. Withholding information about a consumer's medical condition from other professionals at his/her request Conflicts with making appropriate referrals for necessary medical services.

13. Acting to maintain the credibility of a badly needed independent living center with the disabled community by covering for an incompetent colleague conflicts with "blowing the whistle" on that colleague to ensure quality services.

23. Providing consumers with case file information they request conflicts with withholding distressing information from consumers.

31. Informing a consumer about a fatal disease so he/she can plan for the future conflicts with not disclosing distressful medical information to a consumer whose physician has not explained the disease to him/her.

37. Funding a service such as surgery to prolong a consumer's productive life conflicts with providing other services to large numbers of consumers at equal cost with the same funds.

7. Maintaining consumer confidentiality regarding a poor work history to increase employment opportunities conflicts with providing an employer with the necessary information for making an informed hiring decision.

4. Maximizing a consumer's placement success by withholding information from an employer conflicts with maximizing opportunities of other consumers with that same employer.

12. Providing a large amount of available funds to a small number of severely disabled consumers to meet agency priorities conflicts with providing a large number of less severely disabled consumers with adequate and timely services.

33. Providing a consumer with a requested service such as agency transportation conflicts with following agency policy that limits a service (vehicle use) for group activities.

25. Returning a consumer to work at the insurance carrier's request conflicts with providing placement services when the consumer is job ready.

26. Abiding by a supervisor's recommendation against providing a medical service conflicts with providing medical services you believe would be beneficial to the consumer.

34. Providing a consumer who's quadriplegic with a service such as van modifications costing $10,000 conflicts with providing other services at equal cost for several consumers.

29. Providing vocational services to a consumer conflicts with adhering to order of selection criteria of the agency.

35. Providing expensive educational funding to a consumer who requests it conflicts with providing other services at equal cost with the same available funds for several consumers.

11. Closing a consumer's case as a homemaker in accordance with the rehabilitation team's decision conflicts with providing further services to enhance employment potential.

Implications and Conclusions

Findings by Parham et al. (1983) indicated that ILSPs' perceptions, programs' missions, and funding sources may be antithetical to consumers' choices. These situations may create ethical dilemmas when juxtaposed with the independent living philosophy indicated by DeJong (1979) and the "minority group model" proposed by Hahn (1984).

A paucity of research exists on the types of ethical dilemmas encountered by ILSPs and their perceptions on the need for training to address these dilemmas. Results of this study could guide the development of ethics pre-service and in-service training for ILSPs as it suggests relevant dilemmas germane to independent living and fill a training need indicated by this occupational group.

The development of ethics training materials could enhance current skills of ILSPs in: (a) identification of ethical dilemmas in case studies, (13) developing resolutions to ethical dilemmas, and (c) providing opportunity to express counseling and explore decision-making skills in role play scenarios with consumers.

Although the REDS may not have identified all ethical dilemmas encountered by ILSPs and generalization of these situations to other geographic locations in the country should be made with caution, this study has contributed to filling the void in the literature regarding ethical dilemmas encountered by ILSPs and their perceptions on the need for training to address these dilemmas. Additional research is needed to corroborate these findings, identify other types of ethical dilemmas and the perceptions of ILSPs regarding training needs to address dilemmatic situations.

References

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

Budde, J.F., Petty, C.R., Nelson, C., & Couch, R.W. (1986). Evaluating the impact of independent living centers on consumers and the community. Journal of Rehabilitation, 52(2), 68-72.

DeJong, G. (1979). Independent living: From social movement to analytic paradigm. Archives of Physical Medicine and Rehabilitation, 60, 435-446.

Geist, C.S. (1980). Development of an independent living rehabilitation program curriculum. Journal of Rehabilitation, 46(2), 53-55.

Hahn, H. (1984). Changing perception of disability and the future of rehabilitation. In L.G. Perlman, & G.F. Austin (Eds.), Social influences in rehabilitation planning: Blueprint for the 21st century. A report of the Ninth Mary E. Switzer Memorial Seminar (May 1985). Alexandria, VA:National Rehabilitation Association.

Harding, C.G. (1985). Moral Dilemmas. Chicago: Precedent Publishing.

Nosek, M.A., Roth, P.L., & Zhu, Y. (1990). Independent living programs: The impact of program age, consumer control, and budget on program operation. Journal of Rehabilitation, 56(4) 28-35.

Parham, J., Hart, T., Newton, P., & Terraciano, T. (1983). Complementary concepts: Independent living and in-home respite care. Journal of Rehabilitation, 49(1), 70-74.

Purtilo, R.B. (1983). Ethics in allied health education: State of the art. Journal of Allied Health, 12, 210-221. Rehabilitation Act Amendments of 1986, Pub. L. No. 99-506, 100 Stat. 1807.

Rubin, S.E., & Roessler, R.T. (1983). Foundations of the vocational rehabilitation process, (2nd ed.) Austin, TX: Pro-Ed.

Wong, H.D. (1990). Ethical dilemmas encountered by rehabilitation counselors and independent living service providers. Unpublished doctoral dissertation, Rehabilitation Institute, Southern Illinois University, Carbondale, IL.
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Title Annotation:Service Delivery
Author:Millard, Richard P.
Publication:The Journal of Rehabilitation
Date:Oct 1, 1992
Words:2908
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