Center for the Study of Ethics in the Professions at IIT

1. Introduction

Growing concern for the human rights of mentally retarded individuals over the past several years has resulted in a greater awareness of the need to scrutinize closely the programmatic procedures used in working with retarded clients. Particular attention has been focused on techniques assigned to influence client behaviors. These techniques may be categorized as follows:

1. Physical techniques, including deliberate modifications of environment and of the individual's place in the environment;

2. Psychological principles applied in a systematic manner to affect behaviors; and

3. Psycho-pharmacological agents given for the purpose of affecting behaviors.

It has long been,recognized that the effects of the environment on human behavior, whether through planned systematic intervention or the lack of intervention. have far reaching consequences which may, at times, be irreversible. Recent refinements in our understanding of the principles of human behavior have rendered such behavior intervention techniques increasingly effective. If properly applied, most professionals would agree that these techniques have significant potential for helping mentally retarded persons to develop their abilities. -However, the degree of control possible over other human beings requires a careful review of the attendant ethical and moral questions concerning behavior modification, behavior shaping drugs, and similar intervention techniques.

All individuals in our complex society are vulnerable to violations of their rights. However, the likelihood of having their rights violated is greater for individuals who are mentally retarded not only because they are less able to speak on their own behalf, but also because they are more dependent for assistance in daily-living on other individuals and social systems whose motivations and responsibilities are influenced by demands aside from the clients' interests. When making decisions connected with a client's service plan, every practitioner should, as a matter of course, take measures which assure that-the client's rights are safeguarded. At the same time, mentally retarded individuals should not be deprived of potentially effective services; and, therefore, qualified practitioners should not be instilled 'with such caution that their mentally retarded clients are denied access to needed services. Practitioners must take into account the vulnerability of this population when planning and administering any part of an individual's over-all program plan.2 While careful review procedures similar to those outlined below are essential, perhaps one of the better safeguards against rights violations is empathy. Practitioners should ask themselves, would you agree to the identical treatment for yourself?

The purpose of this document is to outline procedures for prevention of abuse while encouraging the use of these techniques to assist mentally retarded individuals to achieve life-enriching goals.

2. Individual Plans

All agencies or organizations rendering direct services to mentally retarded individual's" should have policies and procedures which incorporate the following:

1. Implementation of programs should take place only after there is written documentation of required approvals of goals, techniques and design of the program in accordance with the procedures outlined in Section III of this policy statement.

2. There should be routine, active participation by the client in selecting his or her own program goals and techniques with consultation as necessary from parents, guardians, or legal representatives. The client's consent should be obtained based upon a reasonable assurance that he or she understands the program's objectives, procedures, rationale, and any alternative approaches available; in addition, the client should be permitted to withdraw consent at any stage of the program and be fully informed in advance of his or her right to do so.

3. There should be a periodic reassessment of every client's habilitation plan by his or her program coordinator. Goals and techniques should be considered separately to assure that the combination selected (1) fits logically into the client's comprehensive, individually tailored habilitation plan and (2) is a minimal intervention strategy consistent with reasonable and optimistic expectations of improvement in the client's ability to function independently.

4. There should be up-to-date written documentation of the 4 status of the client's comprehensive individually tailored habilitation plan. Such documentation should include:

   1. the identification of current priorities among the client's service goals, including appropriate justification;

   2. the rationale for selection of intervention strategies to achieve such goals;

   3. records documenting the client's progress toward goals with an interpretation of the effectiveness of the intervention strategy applied; and

   4. evidence that priorities are altered in keeping with the client's growth and development.

   Ongoing clinical documentation is a major source of evaluative data to: (a) the practitioner, the client, and the client's representative; (b) responsible governmental or non-governmental officials within the administrative hierarchy in which the practitioner functions as well as other administrative and judicial review bodies to which he or she may be accountable; and (c) research scientists.

5. The use of techniques to influence a client's behavior for the convenience of staff and without particular, planned benefit to the client is not acceptable and should be prohibited.

6. Supervision of each aspect of a program should be the responsibility of a qualified and competent person and should be monitored by the client's program coordinator.

3. Review Procedures

All programs designed to influence behavior should undergo review on an individual or class basis by at least two bodies:

1. A professional review body which should determine the appropriateness and validity of the goals and techniques; and

2. A human rights review and protection board 6 which shall assess the ethical and legal implications of the proposed behavioral goals and the validity of the procedures for obtaining informed,consent.

In addition, techniques considered to be experimental in nature should be reviewed by a research review committee consisting of qualified research scientists who are competent to judge the merits of the proposal and the validity of the research design.

In order to conceptualize the gradations of review proposed, a classification of goals and techniques according to the type of review each would receive is discussed below:

1. Classification of Goals for Review. Goals should be considered in terms of their uniqueness or universality. In general, the more unique the goal, the more stringent the review should be. Two types of goals, requiring different types of review, are described below:

   1. Generally Acceptable Goals. On the basis of review by the professional review body and the human rights review and protection board, some behavioral goals will be approved as generally valid and applicable; these goals will require periodic reevaluation, but no additional review procedures.

   2. Controversial Goals. Certain other behavioral goals will require additional review whenever they are considered for individuals or groups of individuals. The review procedures should include (a) obtaining the informed consent of the individual; (b) evidence of participation of the mentally retarded individual or his or her representative in establishment of goals; and (c) specified time periods for the review of the appropriateness of such goals.

   Commentary: Goals which might receive blanket endorsement of review bodies are those which are highly valued and generally sanctioned by society. Examples of such goals would include acquiring: (a) developmental skills such as toileting, self-dressing and self-feeding; (b) social skills such as language and communication, cooperative behavior and certain work-related behaviors; (c) culturally desirable skills such as work skills, recreation skills, and skills related to mobility (bicycling, skating). Another example of generally sanctioned goals would be the elimination of behaviors which cause the client suffering, pain or harm, such as decreasing hyperactivity, alleviating severe depression, reducing severe and chronic anxiety, or eliminating physically self-damaging behavior. Programs should be designed to develop behaviors, not simply to remove them.  

   In some cases, review bodies might endorse certain goals as generally acceptable only for individuals enrolled in specific programs. Written entry requirements should be clearly stated in such cases.

   Examples of goals which should be examined on an individual basis are: (a) elimination of hallucinations; (b) elimination of seizures; (c) development of legal or non-injurious patterns of sexual behavior; (d) de-escalation of certain forms of aggressive or competitive behaviors; (e) development of socially acceptable types of affiliative behavior (loving parents); (f) strengthening or weakening certain types of assertive behaviors in determining the desirability of such goals information concerning the medical, social, psychological and/or the physical environment of the individual should be assessed.

2. Classification of Techniques for Review. Techniques should be examined in terms of their location on the following three continua: safety vs. danger to the client, enhancement vs. dehumanization of the client, and demonstrated efficacy vs. experimental nature of the procedure. In general, the greater the risk in the use of a technique, the more stringent the review should be and the more restrictive the use. Three types of techniques have been identified which require different types of review:

   1. Generally Acceptable Techniques. 7 On the basis of an assessment by the professional review body and the human rights review and protection board, some techniques which influence behavior will be approved as generally valid and applicable; such techniques will require periodic reevaluation but no additional review procedures before they are applied. Common types of psychological, physical and pharmacological interventions are included in this category.

   2. Controversial Techniques. Certain techniques for influencing behaviors may involve elements of risk, pain or infringements. In such instances more stringent review procedures should be imposed including (a) obtaining the informed consent of the individual; (b) evidence of participation of the recipient in the selection of techniques; (c) specific time periods for review of the effectiveness of such techniques as well as a system for minimizing risks; and (d) a procedure to appeal the decision." of a review body. When considering the endorsement of these techniques in a program, a review body should weigh the likelihood of a long-term con sequence which might be an undesired by-product of exposure to risk, pain or infringement on dignity.

   3. Experimental Techniques. Certain other techniques which may be proposed for influencing behaviors should be designated as "experimental procedures" because there is limited supportive evidence concerning their efficacy. Such techniques should be used only when they are judged to be in the best interest of the individual, and then only under conditions where their consequences can be carefully controlled under competent professional supervision. Experimental control methods should be employed to verify the relation of the experimental technique to the achievement of the client's goal. For such procedures, in addition to review procedures employed for controversial techniques under III B. above, a written research proposal should undergo review by a qualified researcher(s) to evaluate the scientific merits of the proposal and the validity of the experimental design of the study proposed.

Commentary: In all cases, techniques should be applied by persons trained to meet minimum standards of competency under the supervision of a practitioner who is thoroughly knowledgeable and competent in the application of the particular techniques.8

Examples of psychological techniques 9 which are likely to fall into the "generally acceptable" category are (a) positive social reinforces such as verbal approval, smiles and, for children, hugs; (b) extinction; and (c) contingent observation.

Examples of controversial techniques which should be subject to review for each individual include restraints when life is not threatened, aversive conditioning, time out, seclusion,10 and, perhaps, overcorrection and educational fines. This category also applies when drugs are prescribed above recommended or where there -are legitimate differences in clinical judgment regarding correct dosage of certain drugs.

Life-protecting techniques which interfere with physical self-destruction by the temporary use of restraining methods should be readily available but ought to be time-limited options within a behavior-building program. Each occasion of use should be reported to the review bodies, and frequent use should result in re-examination of the client's entire program.

Examples of techniques requiring research review include acupuncture, certain forms of biofeedback direct electrical stimulation of the brain, and prescription of drugs released by FDA for clinical investigation but not for clinical use. The prescription of drugs which have not received FDA clearance should be prohibited.

There is no absolute break in the continuum of what constitutes research and what constitutes services. Therefore, it is important that there be documented recognition and justification by practitioners when a strategy is employed for an individual in untested circumstances, and that clinical documentation of the effects of the intervention be recorded.

4. Definitions

For the purpose of this paper the following definitions apply.

1. Experimental procedure - A technique used with a clinical objective for an individual when its efficacy has not been generally established and accepted within the profession prescribing its use.

2. Research - Scientific investigation designed to reveal (a) the mechanism by which a process works (basic) or (b) the efficacy of a procedure under specified conditions (applied).

3. Physical techniques - Any deliberate restriction of physical freedom designed to modify behaviors of an individual or group of individuals includes but is not limited to physical restraints, removal of an individual from one setting to another temporarily or permanently, and mechanically\ limiting freedom of movement.

4. Psycho-pharmacological agents - Those drugs prescribed for the purpose of influencing behavior.

5. Psychological technique- Deliberate application of procedures designed to achieve specific behavioral objectives. Includes but is not limited to positive reinforcement, contingency management, token economy, flooding, systematic desensitization, aversive stimulation, extinction, suggestion and hypnosis, and psychotherapy.

Footnotes:

1. The complex area of psycho-surgery is beyond the scope of this paper.

2. Obtaining a client's informed consent or that of the client's surrogate is an important means of safeguarding an individual's rights. Because informed consent is a central consideration in a variety of circumstances (e.g., sterilization, guardianship, involvement in research projects, etc.) a separate position paper defining and spelling out the application of informed consent with mentally retarded clients currently is being prepared by the Association.

3. The rights of the mentally retarded individual to make decisions which affect his or her life, and to have others intervene in such decisions only to the extent that the individual's ability to represent his or her own interests is .impaired, is discussed more fully in the AAMD policy statements, "Guardianship for Mentally Retarded Persons" and "The Right to Habilitation for Persons who are Mentally Retarded."

4. See AAMD Policy Statement on "The Right to Habilitation for Persons who are Mentally Retarded. "

5. See The Right to Habilitation for Persons Who Are Mentally Retarded.

6. See Human Rights Review and Protection Boards.

7. Even generally acceptable techniques are objectional to some individuals on religious or other personal grounds. Clients or their representatives should have the right to refuse any form of treatment or intervention when they feel it violates such religious or personal convictions. The client or his or her representative should be apprised of the possible consequences of such refusal .and appropriate remarks should be entered in the client's records and witnessed by the client or his or her representative.

8. Suggested standards of competency appear in the Florida Guidelines for the Use of Behavioral Procedures in State Programs for the Retarded, May, Jack G., Jr., et al. 1974

9. Because terminology is subject to interpretation, every technique which the local review body categorizes as generally acceptable, controversial or experimental should be operationally defined to accurately reflect the meaning intended by the review body.

10. Accreditation standards applicable to management of maladaptive behavior appear in Section 2.1.8 of the New and Revised Standards for Residential Facilities, as modified on November 14, 1974 published by the Joint Commission on Accreditation of Hospitals.

Adopted March 1975