AIDS: a continuing challenge for rehabilitation professionals.

With the AIDS epidemic universally recognized as one of the major challenges of our time, rehabilitation professionals have a mandate to not only participate in implementing strategies, but also to function as leaders for the nation as it responds to the problem of AIDS. This mandate is supported by Canon 9 of the Code of Professional Ethics for Rehabilitation Counselors, which states: "Rehabilitation Counselors shall establish and maintain their professional competencies at such a level that their clients receive the benefit of the highest quality of services the profession is capable of offering" (McCrone, 1988, p. 102).

In addition, as new information emerges the definition of the two key concepts of HIV positive (or HIV+) and AIDS continues to change.

The Teacher Education Resource Manual (1991) provides some useful medical information regarding HIV as reported by Keeling. The resultant HIV definition is:

"The Human Immunodeficiency Virus (HIV) causes a chronic, progressive, immunologic deficiency disease with a spectrum of manifestations. Taken together, these manifestations comprise the continuum of HIV disease. This continuum consists of a series of identifiable and predictable phases, or stages, that follow one another in sequence. People with HIV disease move along this continuum at varying rates, depending upon the influence of a variety of factors" (p. 4).

Four major stages/phases of the HIV disease are cited by Keeling as:

* Acute (primary) HIV Disease;

* Chronic Asymptomatic HIV Disease;

* Chronic Symptomatic HIV Disease; and

* Advanced (severe) Disease (AIDS). The U.S. Department of Education (1987) defines AIDS (acquired immune deficiency syndrome) as:

"A disease caused by a virus that destroys a person's defenses against infections. These defenses are known as the immune system. The AIDS virus, known as human immunodeficiency virus, or HIV, can so weaken a person's immune system that he or she cannot fight off even mild infections and eventually becomes vulnerable to life-threatening infections and cancers" (p. 1).

It is incumbent upon the rehabilitation professional to continuously seek the current definition of these two concepts and information on their implications for service delivery.

The number of people who are HIV+ and who have AIDS is significant. As of February 1992, 213,641 cases were reported in the United States, with 138,395 cases resulting in death. Currently, the 40-75 percent of people with AIDS who are receiving the treatment AZT have a 35 percent reduction in the risk of death (Morbidity and Mortality Weekly Report, 1990) and the promise of new hope. The number of people in the United States who are infected with the AIDS virus (HIV+) but have not developed the disease is now estimated at 1 million (Center for Disease Control, 1992). Thus, Wong, Allen, and Moore (1988) note:

"... as the disease is brought under better medical care and as the prognosis improves for persons with AIDS, the rehabilitation professional will be called upon to provide rehabilitative and restorative services for this group. This will require a broad and diverse number of counselor skills. Some of the major tasks faced by all rehabilitation personnel who serve persons with AIDS will be overcoming the social, personal and institutional barriers that confront this group" (p. 39).

Rehabilitation professionals also have a responsibility to serve as advocates in indicating that AIDS is not a moral issue, but a health (life/death) issue of human resources in the community. A major role for rehabilitation professionals is to provide employers with education about the disease of AIDS, its future impact on the workforce, and how to adjust to new medical conditions and needs of all employees.

The need for rehabilitation educators and other professionals to be involved in the eradication of AIDS is also unquestionable. Rehabilitation professionals are in a unique position to provide education to employers and also to students who will then practice the profession of rehabilitation counseling and work with businesses and people who are living with AIDS. The impact of the rehabilitation educator and professional is m manifold:

* they have a powerful opportunity to impact on attitudes;

* they are in a position to provide educational information that can reduce the individual's risk of becoming HIV+; and

* educators will be contributing to a better quality of life for persons living with AIDS by their sensitive, enlightened involvement with students who will then be working as rehabilitation professionals.

As people who are HIV+ are living longer, the involvement of rehabilitation professionals becomes more important. Equally important is the need for educators to reflect on he philosophical foundations of rehabilitation counseling that focus on the quality of life for people with disabilities. Clearly, rehabilitation educators and professionals have a role to play that has far-reaching, positive implications.

Challenges and Recommendations

All of the HIV/AIDS literature reflects that counselors must be aware of their own attitudes and biases. Counselors, educators and others involved in working with the community need to develop a knowledge base that has the potential to be revised quickly, establish linkages with individuals in related disciplines, learn from persons living with AIDS, and advocate for empowerment for all people with disabilities.

Not only is AIDS a health issue, but it touches on all major sources involved in quality of life issues, Specifically, AIDS has the potential to cause people to explore their values, beliefs, sexual behaviors, views of death/dying, relationship development, fears, hopes, dreams, religion, and more. As powerful as the ramifications of AIDS are, many people feel that they are not at risk because they are not homosexual males living in San Francisco or an African-American intravenous drug user living in New York. AIDS is no longer someone else's problem. No one is immune from its human, economic, medical, social, ethical, and political impact.

Awareness of the need to provide services to people with AIDS within public vocational rehabilitation programs is not well established in our society. It is critical that public vocational rehabilitation examine its personnel, professional training, allocation of resources, policies, counseling process, and educational programs to learn what has been and can be accomplished to best meet the needs of people with AIDS.

Some inherent problems within the rehabilitation community are lack of knowledge of psychosocial issues and discomfort about meeting the needs of clients with AIDS. Little research has been disseminated to alleviate this dilemma. An additional problem is focused on individual values and ideas pertaining to people with AIDS. Another problem is that many rehabilitation workers are only superficially aware of the employment discrimination experienced by people with AIDS.

A major dilemma encountered by the rehabilitation professional was presented by Feist (1991) when she reported that:

"Often they [rehabilitation professionals] are faced with an ethical dilemma when clients refuse to inform those with whom they come in contact of their disease. Although confidentiality is crucial in the code of ethics .... many practitioners are unsure of when confidentiality should be breached" (p. 225).

Another challenge is the lack of a systematic set of practices on how to serve as an educator to employees or as a vocational advocate for the consumer with AIDS. Overall, rehabilitation's response to these cited problems and related issues is the essence of the challenge. Everyone needs to be involved.

Similarly, Haney (1988) viewed many of the potential psychosocial consequences of AIDS as disconnections: disconnections from the past, present, and future; from loved ones; and from ways of defining ourselves, such as job activities, capabilities, skills, and physical appearance. "Finally, AIDS may lead to a disconnection from things many of us take for granted, such as a sense of power and control over our lives, hopes, dreams, and aspirations. This further exacerbates the sense of isolation, alienation, and aloneness that people with AIDS experience" (p. 251).

Among the approaches for empowering people who have AIDS to effectively cope with disconnections is through the perceived sense of power and control one experiences by contributing to the community through the workforce. Providing a sense of purpose and direction in extending the quality of life for the consumer is fundamental. Establishing a sense of power and control is an essential strategy in empowering the person with AIDS to live life fully. The acquisition of power by the individual is a cornerstone in the practice of rehabilitation and underscores the essence of the public vocational rehabilitation process. Rehabilitation professionals cannot circumvent their responsibilities to work with people who have AIDS or are HIV+. Regardless of the nature of the disability, our first priority is focused on the individual.

Haney (1988) further noted in reporting from the Advisory Committee of People with AIDS that the beginning of helping people with AIDS not to view themselves as victims is by not buying into the notion yourself. "To label us as 'victims'... implies defeat and we are only occasionally 'patients,' which implies passivity, helplessness, and dependence upon the care of others. We are 'people with AIDS'" (p. 253).

Continuing with his theme of "disconnection," Haney (1988) proposes an additional caution regarding the significance of the role of hope for everyone involved with people living with AIDS:

"AIDS is truly devastating in its effect of disconnecting the person with AIDS from things that have a lot of meaning. For example, many people who have AIDS become unable to work. This has the potential of destroying a sense of productivity and contribution and disconnecting the person with AIDS from a sense of self-worth. Furthermore, this disconnects the person with AIDS from a sense of future, something to work toward and look forward to. Persons with AIDS need assistance to realize a sense of purpose and meaning, whether through job rehabilitation, assistance redefining self-worth, or help finding a flexible job so the person with AIDS can work when feeling energetic" (p. 252).

Overall, rehabilitation professionals must continue to examine their own inherent values and attitudes to ensure that they are not unconsciously projecting an insensitivity for the needs and rights of all people with disabilities, including people with AIDS.

Knowledge through education is the solution to supporting the underlying rehabilitation values of a "belief in all people's worth and dignity, belief in the individual's capacity for growth and self-determination, acceptance of the uniqueness of the individual, and the importance of self-help and client participation" (Haney, 1988 p. 253).

The need for assertive action by rehabilitation professionals and educators and their peers is clear:

First, there is a need for the development of training materials dealing with issues concerning AIDS. These materials could include tapes, films, case studies, and attitude scales, in addition to counseling alternatives and strategies.

Second, there is the need for professionals in related disciplines to provide accurate, up-to-date information to rehabilitation professionals. An interdisciplinary team approach would include nursing and related medical professionals, legal personnel, government representatives, sociologists, and all types of professionals involved in empowering people with AIDS.

Third, internship placements in rehabilitation agencies where the rehabilitation student will encounter persons living with AIDS must be considered. Helping to reduce the fear of being infected with the HIV virus and attitude modification in specific work settings is another assertive action.

Valid research which relates to all areas of living with AIDS is needed and can be supported through the use of master's theses and doctoral dissertations. Finally, professional ethics necessitate that rehabilitation educators and counselors vigorously share knowledge and provide information to their students and communities about what is perhaps this generation's most frightening illness.

We need to experiment with a variety of methodologies for presenting AIDS education to rehabilitation professionals and counselors, students, employers, and to the community at large. It is suggested that strategies include lectures, discussions, values clarifications, videos, readings, conferences, workshops, computer programs, panels comprised of persons living with AIDS, and any other creative approaches that can be identified.

Backer (1987) suggests that rehabilitation has a role both in the healthcare cost containment and return-to-work aspects of dealing with the AIDS crisis in the workplace. "Rehabilitation professionals can contribute their knowledge of effective rehabilitation techniques and various technologies that can help workers with AIDS cope with the demands of work. Knowledge of rehabilitation principles and programs can guide policies and practices in the workplace regarding AIDS, including attitude-changing education for management and other workers" (p. 39).

Summary

As people providing AIDS education, we need to be aware of the pitfalls or limitations of AIDS education. One is that people may be defensive about discussing this sensitive topic. Thus, as educators, we must be nondefensive and prepared to deal with the questioning of assumptions.

It is critical that information be targeted so that it is age appropriate, that it is multiculturally appropriate, that we avoid discussion of people's religion, and that we not blame an individual for his or her sexual orientation.

The best hope for prevention rests on effective public information and education. Rehabilitation professionals have a vital role to play in this particular area and in disseminating the belief that AIDS can be prevented through awareness of behaviors that place people at risk for HIV infection. A selected set of resources is provided in Table 1 to assist in this area.

We must keep in mind that information and data is constantly changing and that we must therefore employ effective methods to remain current. This reinforces the tremendous need to approach AIDS education and prevention from a holistic, multicultural perspective. The Americans with Disabilities Act (ADA), for example, is a new tool that, if we fully understand and exploit its possibilities, can provide a whole new dimension to our mission regarding people who have AIDS. Also, we have not begun to address many of the unique approaches we can apply toward the specific disability/disabilities of each individual. This is an area that warrants our constant attention.

If we do not accept the role demanded of us by the AIDS crisis, rehabilitation professionals and educators will become part of the problem rather than an important part of its solution. Clearly, we can be proud of our successes throughout the history of American rehabilitation in resolving complex disability issues, and the AIDS epidemic requires not less but more of a proactive stance. Our responsibility as rehabilitation professionals and advocates for individuals with disabilities directs us to focus on meeting the challenges of awareness, support, quality of life, and independence for people with AIDS.

  Table 1
     Selected References and Resources on AIDS

   1. AIDS: Changing the rules (1987). Washington, D.C. (Video)
      WETA-TV, Educational Activities, P.O. Box 2626,
      Washington, DC 20013. Telephone: [phone] or toll
      free at 1-800-845-3000
   2. AIDS Information for People of Color. San Francisco AIDS
      Foundation.
   3. AIDS Today--A medical case management quarterly. K. Thorn,
      Thorn Publications, 7657 Winnetka Avenue, Suite 629,
      Canoga Park, CA 91306.
   4. American Psychologist (1988). Special issue: Psychology
      and AIDS. 43, 11.
   5. Center for Disease Control (1990, March 13). HIV-AIDS
      surveillance report. Atlanta, GA: Author.
   6. Corthell, D.W., & Oliverio, M. (1989). Vocational
      rehabilitation services to persons with HIV (AIDS).
      University of Wisconsin-Stout: Research and Training
      Center.
   7. Drug users: Do not share needles. Health Education
      Resource Organization (HERO). (301) 945-AIDS
   8. Gay Mens' Health Crisis. [phone]
   9. Hispanics AIDS Forum 853 Broadway, Suite 2007, New York,
      NY 10003.[phone] or 870-1864
  10. Kain, C.D. (1989) (Ed.). No longer immune: A counselor's
      guide to AIDS. Alexandria, VA: AACD
  11. Kiester, E. (1990). AIDS & vision loss. New York:
      American Foundation for the Blind.
  12. Minority Task Force on AIDS. [phone]
  13. Mothers of AIDS Patients. [phone]
  14. National AIDS Information Clearinghouse P.O. Box 6003,
      Rockville, MD 20850, 1-800-458-5231; TTY/TDD:
      1-800-243-7012.
  15. National AIDS Information line: 1-800-342-AIDS (24
      hours per day). The Spanish Hotline: [phone].
      Hearing Impaired: 1-800-AIDS-TTY.
  16. Reichert, D.A., & MacGuffie, R.A. (1988). AIDS: An
      overview for rehabilitation counselors. Journal of Applied
      Rehabilitation Counseling, 19, 2, 34-37.
  17. U.S. Public Health--American Red Cross.
  18. U.S. Public Health Service--Center for Disease Control--
      What about AIDS testing? What you should know about AIDS.
      How you won't get AIDS.
  19. Wong, H., Allen, H.A, & Moore, J. (1988). AIDS: Dynamics
      and rehabilitation concerns. Journal of Applied
      Rehabilitation Counseling, 19, 3, 37-41.

Dr. Atkins is Professor, Department of Administration, Rehabilitation & Post-secondary Education, at San Diego State University and Ms. Hancock is a doctoral student in rehabilitation at the University of Northern Colorado.

Bibliography

1. Backer, T.E. (1987). The future of rehabilitation in the workplace: Drug abuse, AIDS and disability management. Journal of Applied Rehabilitation Counseling, 19 (2), 38-41.

2. Center for Disease Control (1990). HIV Prevalence Estimates in AIDS Cases Projection for U.S.: Based Upon a Workshop Report. Morbidity and Mortality Weekly Report, 39 (RR-16), 25-26.

3. Center for Disease Control (1992, March 26). [Interview with Dr. Louis Sullivan, Director of AIDS Division, Center for Disease Control.] U.S. Department of Health and Human Services.

4. Feist, S.M. (1991). Ethical and legal rights of persons with AIDS: Confidentiality issues. Rehabilitation Education, 5, 225-231.

5. Haney, P. (1988). Providing empowerment to the person with AIDS. Social Work, 251-253.

6. McCrone, W. (Ed.) (1988). Legal literacy for rehabilitation counselors. Buffalo, New York: State University of New York at Buffalo, Regional Rehabilitation Continuing Education Program: Region II.

7. McKusick, L. (Ed.) (1986). What to do about AIDS. Berkeley: University of California Press.

8. Teacher Education Resource Manual (1991). Resources to aid in the development of an HIV/AIDS curriculum for teachers in training. Rockville, MD: American College Health Association.

9. U.S. Department of Education (1987). AIDS and the education of our children: A guide for parents and teachers. Pueblo, CO: Consumer Information Center.

10. Wong, H., Allen, H.A., & Moore, J. (1988). AIDS: Dynamics and rehabilitation concerns. Journal of Applied Rehabilitation Counseling, 19 (3), 37-41.