Center for the Study of Ethics in the Professions at IIT

An official Statement of the American Association on Mental Deficiency

Preface

The American Association on Mental Deficiency supports the "Declaration of General and Special Rights of the Mentally Retarded" as adopted by the International League of Societies for the Mentally Handicapped, but recognizes the need to make statements more specific in nature and to make recommendations for action. Accordingly, the following document represents the Association's position on these matters, and is the Association's basic statement of its aims, in manners consistent with professional responsibility and professional opinion.

The Association will pursue these goals through its regional and national organizations, through its publications, and through its membership in other groups.

The Association will also help to design, to promulgate, and to implement programs of preparation for professional, paraprofessionals, and nonprofessional that will facilitate their safeguarding and implementation of the rights of retarded persons as expressed in this statement. The Association will assist in the drafting of model legislation; will, on request, comment on and assist in the development of specific proposals for legislation that would affect retarded persons ; and will participate in legal proceedings of significant import and appropriate focus. Professionals should bear in mind the statements in this document when preparing both general and individual programs for retarded persons, hen designing facilities and organizing services for retarded persons, when taking part on the legislative process, when taking part in the judicial process , when considering the allocation of fiscal and other resources, when hiring workers, when seeking employment, when teaching, when conducting research, and most of all, when participating directly in the treatment, training, and habilitation of retarded persons. When a professional seed that retarded individuals are being dealt with in a manner inconsistent with the principles expressed in this document, then that professional person should act in a conscientious manner to remedy the situation immediately through individual or group action, and by formal or informal process. This may be accomplished through job action, through administrative action, through legislative action, through judicial action, or through whatever public and private means are available, moral, ethical, and legal. The Association pledges to support such effects in order to ensure the fullest exercise of professional skills and judgment on behalf of retarded persons. Association and individual action should be taken whenever an issue arises that affects the community of interests of retarded persons, whether that effect is direct or indirect.

Mentally retarded citizens are entitled to enjoy and to exercise the same rights as a re available to nonretarded citizens, to the limits of their ability to do so. As handicapped citizens, they are also entitled to specific extensions of, and additions to, these basic rights, in order to allow their free exercise and enjoyment. When an individual retarded citizen is unable to enjoy and exercise his or her rights, it is the obligation of the society to intervene so as to safeguard these rights, and to act humanely and conscientiously in that person's behalf.

Basic Rights

1. The Basic rights that a retarded person shares with his or her nonretarded peers include, but are not limited to, those implied in "life, liberty, and the pursuit of happiness," and those specified in detail in the various documents that provide the basis for governing democratic nations. Specific rights of mentally retarded persons include, but are not limited to:

1. The right to freedom of choice within the individual's capacity to make decisions and within the limitations imposed on all persons.

2. The right to live in the least restrictive individually appropriate environment.

   Nonretarded adults have considerable latitude to control their own lives, particularly in terms of choosing place of employment and place of residence. Insofar as he or she is able to make these choices, a retarded adult should have the same freedom of choice. A classification of mental retardation is not, of itself, sufficient cause to restrict an individual's freedom of movement.

3. The right to gainful employment, and to a fair day's pay for a fair day's labor.

   A retarded individual should be allowed to work at whatever job he or she is capable of performing and should be paid at a level reflecting his or her productivity. If a retarded person cannot work in the community at large, and is appropriately employed ar the maintenance of the public or private institution at which he or she resides, then he also should be paid according to his or her level of productivity, and receive appropriate fringe benefits. In no event should a retarded individual be retained at any facility solely because his of her presence enables the institution to maintain itself.

4. The right to be part of a family.

   A retarded individual should not be summarily excised from his family, and should be permitted and encouraged to be with them whenever his developmental needs can be met satisfactorily in this manner. If he or she is an institutional resident, family visits should be encouraged. Except when such contact may be detrimental to the individual's well-being.

5. The right to marry and to have a family of his or her own.

   Any retarded citizen who can be effectively self-supporting, and who can be reasonably expected to discharge effectively the obligations of marriage and parenthood, should be permitted to marry and to raise a family ; in no even, once a retarded person is married, should this marriage be annulled on the basis of the exclusive circumstance of mental retardation, nor should that person's right to bear and rear children be abridged. If a genetically transmitted condition exists, the retarded person should receive appropriate genetic counseling to ensure his understanding of the condition. If it should become evident that a retarded individual has become incapable of rearing his or her children, as may occur with nonretarded parents, the same legal and professional procedures concerning parenthood that are applicable to families of nonretarded citizens should be applied to those retarded citizens.

6. The right to freedom of movement, hence not to be interned without just cause and due process of law, including the right no to be permanently deprived of liberty by institutionalization in lieu of imprisonment.

   If a retarded individual is brought to trial and ruled incompetent to defend himself, legal council must be provided, at public expense if necessary. A retarded person must not be remanded to any public institution interminably. When a retarded citizen has been judged to be incompetent to stand trial, that citizen must be provided an integrated, individualized habilitative program. Regular judicial and programmatic review of an individual' program must be maintained.

7. The right to speak openly and fully without fear of undue punishment, to privacy, to the practice of a religion, (or the practice of no religion), and to interact with peers.

   A retarded individual should not be made to fear that interacting either exclusively with his or her retarded peers, or with member of society at large, will subject him or her to recrimination. Further, he or she must not be made to fear that complaint about or concern with the character of his or her public care will result in retribution. Every effort should be made for each retarded citizen to have time and space for his or her exclusive use.

Specific Extensions

2. Specific extensions of, and additions to, these basic rights, which are due mentally handicapped persons because of their special needs, include, but are not limited to:

1. The right to a publicly supported and administered comprehensive and integrated set of habilitative programs and services designed to minimize handicap of handicaps.

   The retarded individual may reasonably expect a program of habilitation geared to his or her individual needs at public expense. This program of habilitation should recognize the individual's handicap(s), but should be geared o allowing that individual to function in a way as nearly possible approximating the functioning of nonretarded citizens. Each individual, however severe his handicaps, should be helped to realize his maximum potential through an individualized habilitative program that takes maximum advantage of all relevant services, including social welfare services, medical services, housing services, vocational services, , transportational services, legal services, and financial assistance services. The program should be subject to regular reevaluation and open review, and should be adapted to reflect the growth and learning of the retarded individual. for those severely handicapped individuals who may never be able to function independently, it is the responsibility of the larger society to provide effective and humane supervised care using the full spectrum of resources essential to the person's optimal development in the least restrictive setting consisting with the individual's capacities and needs.

2. The right o a publicly supported and administered program of training and education including, but not restricted to, basic academic and interpersonal skills.

   The society musty make every effort to enable its retarded citizens, form childhood, to learn and us the skills that are necessary to function in the least restrictive setting possible and to function in the community at large with the least supervision that is appropriate. Among the skills that retarded persons should be afforded the opportunity to learn are self-help skills, money handling, use of transportation services, adaptive interpersonal behavior, reading, writing, the ability o take advantage of other services and sources of assistance in the community, and rewarding use of leisure time.

3. The right, beyond those implicit in the tight to education described above, to a publicly administered and supported program of training toward the goal of maximum gainful employment, insofar as the individual is capable.

   The public should provide a comprehensive set of appropriate programs of vocational training designed for retarded citizens. These may be provided through such situations as residential institutions, day care centers, sheltered workshops, vocational rehabilitation centers, or in apprenticeship programs in the larger community. To the extent possible, government at all levels should attempt to see that positions are available for retarded individuals upon completion of their training, either in publicly sponsored programs or in private employment. Governments also should encourage the employment of retarded workers, by eliminating legal and other artificial barriers to their obtaining jobs.

4. The right to protection against exploitation, demeaning treatment, or abuse.

   Retarded individuals should not be exploited, either by those who have been entrusted with their care or b members of the society at large. (Such exploitation the past has frequently resulted from the individual retarded person's inability either to perceive the exploitative aspect of a situation or to defend himself or herself against it.)

5. The right, when participating in research, to be safeguarded from violations of human dignity and to be protected from physical and psychological harm.

   In securing that right, it is essential that research with retarded persons be carried out only with the informed consent of the subjects (or, in very special cases, of their legal guardians), that retarded persons be made aware of their rights not to participate, and that such research as may be done with retarded persons adhere to recognized contemporary standards of ethics and scholarship.

   Nonparticipation in research must never be followed by aversive consequences or the threat or implied threat of aversive consequences. Given the limited ability of many retarded persons to comprehend the nature and possible risks of a research program, it is necessary that particular care be taken to assure that research subject are truly informed on what is required of them, what risks (and possible benefits) are involved, and what will be done with the data. Investigators have a responsibility to confine their research with retarded persons to those studies whose outcomes are likely to bear some ultimate benefit to retarded persons.

6. The right, for a retarded individual who may not be able to act effectively in his or her own behalf, to have a responsible impartial guardian or advocate appointed by the society to protect and effect the exercise and enjoyment of these foregoing rights, insofar as this guardian, in accord with responsible professional opinion, determines that the retarded citizen is able to enjoy and exercise these rights.

   A retarded individual frequently requires the food offices and efforts of nonretarded citizens in order to have his or her welfare safeguarded. In most instances, this fellow citizen will be a member of the retarded individual' family. Occasionally, however, it becomes necessary to have an unrelated citizen or agency act in the retarded person's behalf. The appointment of such an guardian is generally made by the courts; the guardian may be responsible both for the retarded person's estate and for his person. Such appointments should continue to be made by the courts, but only with competent professional advise. The guardian of a retarded individual should not be a public official responsible for the direct and immediate care and management of that particular person.

   It is the responsibility of the guardian to determine, in a manner consistent with reliable contemporary knowledge, the extent to which the individual with whose care he or she is entrusted can function independently, to determine the extent of that person's ability to enjoy and exercise his or her rights, and to seek the exercise thereof.