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Family Planning Services for Persons Handicapped by Mental Retardation

HENRY P. D A V I D , P H D , JOHN D . SMITH, MA, AND E R W I N FRIEDMAN, P H D

Abstract: The National Children's Center, Inc., and Planned Parenthood of Metropolitan Washington joined in organizing a special family planning service for persons handicapped with mental retardation. The limited utilization, despite considerable community recruitment efforts, and the few problems encountered with patients served suggest that handicapped individuals can be seen at lower cost and at greater efficiency in regularly scheduled clinics, provided staff are attuned to their special needs. Informal interviews with residential center and clinic staff, with parents, and

with clients confirm the need for (a) strengthening inservice training in sex education and contraception to prepare potential clients for more effective use of family planning services; (b) counseling with parents who place a high priority on training for independent community living but are reluctant to face the sexuality of their dependent offspring; and (c) increasing community awareness of the legitimate needs and rights of hard-to-reach handicapped persons in preventing unwanted pregnancies. (Am. J. Public Health 66:10531057, 1976)

Introduction
Fear, lack of knowledge, and misunderstandings have long obscured the nature and implications of the sexuality and family planning needs of mentally handicapped persons, be they developmentally disabled or emotionally disturbed. Although family planning services have burgeoned throughout much of the world, and the special needs of developmentally disabled and emotionally disturbed increasingly recognized and documented, organized eflForts to incorporate voluntary fertility-regulating resources into specialized service programs for the mentally handicapped have been sparse.' Studies of the psychosexual development of intellectually handicapped persons demonstrate a process which parallels that of normal peers. With the continuing trend from segregative custodial institutionalization to residential community living arrangements, mentally retarded individuals have commensurately greater opportunity for forming heterosexual relationships and are at greater risk for pregnancy. It is the purpose of this communication to summarize practical experience gained during a 1975 experimental program to provide family planning services to persons handiAddress reprint requests to Dr. Henry P. David, Director of the Transnational Family Research Institute, 8307 Whitman Drive, Bethesda, MD 20034. Dr. David served as Project Advisor and Report Editor; John D. Smith was Project Coordinator; and Erwin Friedman was Director of the National Children's Center, Inc., 6200 Second Street, NW, Washington, D.C. 20011. This paper, submitted to the Joumal April 14, 1976, was revised and accepted for publication June 29, 1976.
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capped by mental retardation in the Metropolitan Washington, D.C, area, including the views expressed by clients, parents, and residential and clinic staffs. Sponsored by the Office of Family Planning, Department of Health, Education, and Welfare, the program was conducted by the National Children's Center, Inc., in consultation with the Transnational Family Research Institute and in cooperation with Planned Parenthood of Metropolitan Washington (PPMW) and the American Institutes for Research. Details on methodology, specific findings, and selected annotated references are cited in the Final Report, copies of which may be requested from the Technical Information Service (see Acknowledgments).

Parents and Staff


Initially, insights were gained through observations and informal discussions conducted in 37 institutions of varied size and structure representative of those serving the retarded in Maryland, Virginia, and the District of Columbia. In addition, 27 families, primarily white and of middle and upper middle class background, volunteered to discuss experiences with their own mildly to severely retarded dependents living at home in the Metropolitan Washington area. Attitudes toward family planning services for mentally retarded persons seemed to be infiuenced both by the perception of the need for services by parents and professionals and the degree to which they deemed current resources adequate. Some believed that the extent of actual or potential sexual activity among the retarded was sufficient to warrant giving considerably more attention to sex education and fam1053

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ily planning services. Others were of the opinion that heterosexual activity was infrequent, that currently existing family planning services, in general, were adequate to meet the need, and that whatever additional resources and efifort could be marshaled to assist the mentally retarded would be more wisely invested elsewhere. Among both parents and professionals, the latter view was much more frequently voiced. Despite differences of opinion, there was consensus on the desirability of sex education, expressed in terms of the need for handicapped persons to have a greater understanding of their bodies, an appreciation of what it means to be a man or woman (i.e., social and sex role behavior), and knowledge of the reproductive processes. Few saw current efiForts in this area as adequate. Although most facilities visited had not initiated any formal program of sex education, awareness of the need was widespread. Deterrents to starting a program seemed to be of four types: (1) fear of parental opposition; (2) lack of available staff time and organizational resources; (3) absence of trained staff to organize and maintain such a program; and (4) conviction that sex education is an inappropriate activity when clients are too handicapped to benefit from a formal program. All of these reasons were mentioned more than once, and the first reason was the most often encountered. Whether or not based on a realistic appraisal of parental opinion, professional staff and administrators believe disapproval by parents to be the single most powerful obstacle to be overcome if sex education programs are to be successfully introduced. The concerns of parents regarding sexual maturation were similar to those discussed by the professionals. Parents recognized the difficulties of adequately teaching sex, even to the non-retarded child or adolescent. Sex education of the retarded was viewed as a far more formidable undertaking, and many parents doubted whether they were the most appropriate persons to assume the pnmary responsibility. The difficulty of the task is compounded by the extreme social isolation of the retarded. Normally, children learn much of what they know about sex from their peers. But the retarded, as one mother observed, "are so cut off from others that they don't even have the opportunity to pick up the usual m(.sinformation about sex." While rejecting the contention that they were a major source of opposition to sex education programs, parents agreed on the desirability for some kind of discussion forum to help them deal with the difficulties of providing meaningful sex information and guidance to a mentally retarded child. Institutions and community agencies which postponed the development of programs because of anticipated parental opposition were seen to be "passing the buck." While parents favored sex education for retarded children in principle, they tended to see it as a particularly difficult task and one from which they did not wish to be excluded. Among the 37 institutions visited, only a few had a routine procedure for evaluating a client's need for contraceptives and for dispensing them when indicated. These tended to be large residential institutions, where in some cases virtually all female residents of childbearing age were automatically placed on a regimen of oral contraceptives. In 1054

other facilities, when a need for family planning services was suspected to exist, an appointment was made in a family planning clinic where the woman received an examination and prescription. Sterilization appeared to be in the forefront of parental thinking. Parental attitudes were influenced by: (a) their fear of pregnancy for their daughters or of their sons being accused of fathering out-of-wedlock children; (b) the extent to which they expected their child to be living unsupervised in the community; and (c) their attitudes toward the possibilities of marriage and parenthood. Most parents who feared the possibility of pregnancy favored close and continual supervision over sterilization, with the thought that should their child ever participate more independently in community life, or live in a group home, they would then favor sterilization. Retarded sons sometimes posed special problems for parents because the community tended to overinterpret their erotically-suggestive behavior as evidence of intent to commit rape and sexual violence. Parents felt that their retarded sons would be the first to be suspected of rapes or molestings which might happen in the community; sterilization was viewed as a partial safeguard. If the attitudes toward sterilization among parents and in institutions could be compared, it would be fair to say that institutions were considerably more wary. Their cumulative experience with the legal and political debates and pressures had caused a very cautious policy to evolve. Only one of the residential facilities visited continued to perform sterilizations. In this facility they were considered to be infrequent, performed only on the most profoundly retarded, and then only with parental consent. In the other facilities, the general policy was to advise parents who inquired that they would have to make their own arrangements with a physician outside the institution. While the administration and staff had accepted these regulations, they were uncertain about their wisdom. One administrator reported that the court imposed a restraining order upon him in the case of four women who were to be sterilized, although both the parents and the women had given consent. He explained that the law maintains a person is not to be presumed incompetent unless the courts so decide; in this case consent was not regarded as legally valid. Parents' openness to the possibility that their children might experience heterosexual relationships, marriage, and childbearing depends very much on their belief that their offspring are capable of living independently. Attainment of independent functioning is the highest priority goal. Both parents and institutional staff most often expressed the opinion that heterosexual activity was infrequent, that currently existing services were adequate, and that additional resources might be more wisely invested in programs more directly oriented to training for independent living. The reported incidence of pregnancy was low. There were conflicting views regarding the extent of sexual intercourse. There was also a widespread belief that fantasy rather than fact explained most reports of sexual activities by residents of institutions. Staff and parental efforts were more oriented toward facilitating simple forms of social interaction and less toward contraceptive counseling and family planning services. AJPH November, 1976, Vol. 66, No. 11

FAMILY PLANNING FOR THE MENTALLY RETARDED

Clients' Views
Open-ended discussions were conducted with approximately 35 mildly to severely retarded individuals either individually and/or in groups of about ten. Ages ranged from 14 to 37 years; all but three or four were residents of institutions and participants in a program designed to prepare them for early transfer to community life. All of the women and most of the men expressed the view that in most cases dating generally led to marriage if the same two people dated long enough. Most agreed that dating could lead to sexual intercourse. Everyone except two younger severely retarded adolescents knew what that was and that it could lead to babies. Most of the men favored sexual intercourse and over one-half indicated that they had tried it. Almost all the women said that they would like to be married some day. About 90 per cent of the higher functioning women also expressed a desire to have children in a family situation. Most of these women said that they would like their family to be small, because they "knew" that it took a lot of money and work to maintain a family. Since a number of males appeared to favor sexual intercourse but did not want babies right away, the subject of birth control and family were discussed. About one-third of the males had heard of "the pill", but only one-half of that group had any notion that it had something to do with a woman's taking it to prevent pregnancy, and even in those cases, it was only a notion. Several men were familiar with condoms and their use as a precaution against venereal diseases, but few had any idea that they could also be used to prevent pregnancy. The women were fairly knowledgeable about "the pill". Most were vague or ignorant about other methods. Very few were using any method. One woman who did not impress the staff as being among the most highly functioning seemed well informed about oral contraceptives, IUDs, and diaphragms. She mentioned that her grandmother had told her about the "facts of life." It was the opinion of the staff that the sex education of a retarded person has as much to do with the education and manner in which the subject is treated in the home as it does with the student's learning capability. These informal discussions with actual and potential clients suggest that there is enough sexual activity occurring among moderately and mildly retarded institutionalized persons so that almost everyone has participated in or been the witness to some sort of sexual activity. While it is not always possible to separate fact from fantasy in such discussions, most of these persons are aware that "society" generally disapproves of their sexual activity. Despite this taboo, many of the persons who joined in the discussions are sexually active and plan to marry; some want families. Very few men or women had adequate knowledge about fertility regulation and no one had previously heard the term "family planning". It was not a topic in the training program for community life.

the efficacy of providing family planning services to mentally handicapped persons, varied recruitment approaches, staff training, medical service delivery, contraceptive use, client attitudes and education, and costs. Establishment of the specialized clinic was widely communicated to target institutions and professional persons, and publicized by mass media announcements. The recruitment efforts were rather unrewarding over a period of seven months. In all, the clinic attracted only 47 clients (44 women and three men) for a total of 71 visits. Of these, 41 came from direct contact with one large public institution, four were referred by county health and welfare departments, and two came as a result of radio announcements. The training for Planned Parenthood special clinic staff was conducted over a period of one month during once-aweek two or three hour sessions. Since the participants were all Planned Parenthood workers familiar with contraception, training focused on interviewing, counseling, and working with persons who are handicapped by mental retardation. Training consisted of three components: (I) lectures from and discussions with several acknowledged experts about fulfilling the needs of mentally retarded persons; (2) actual first-hand contact and observation of persons handicapped by mental retardation (which led a few individuals to de-select themselves from participation in the clinic); and (3) role playing a number of education and counseling sessions to get a feeling for what they were about to do. All the workers were screened volunteers except the physician, clinic manager, and clerk. Education materials were concrete and specifically oriented to the immediate situation. In explaining the physical examination, the interviewer/counselor would use her own body to demonstrate how the client would be lying on the examining table. She would have the client examine the speculum and hold it. In discussing sexual intercourse and contraception, the counselor often referred to a set of drawings prepared by Planned Parenthood of Seattle, Washington. For use in explaining contraceptives and in helping the client select a method, the counselor relied on a fiip chart developed by Planned Parenthood of Northern New York especially for slow learners. This approach and permitting clients to see and handle actual contraceptives seemed to be a practical method for helping them understand the process of contraception. Specialized educational materials* were developed at the National Children's Center, Inc., in consultation with Winifred Kempton. Experience suggests that such items: (a) should be concrete and realistic; (b) must be used repeatedly over a period of time; (c) are best understood in terms of the person's real life situation; and (d) require as their most important ingredient the patience and understanding of the
*More fully described in the Final Project Report available from the Technical Information Service. The following addresses may be useful to readers: (1) Winifred Kempton, Education Director and Consultant on Mental Retardation, Planned Parenthood of Southeastern Pennsylvania, 1220 Sansom Street, Philadelphia, PA 19107; (2) Planned Parenthood of Northern New York, 161 Stone Street, Watertown, NY 13601; (3) Planned Parenthood of Seattle, 2211 East Madison Street, Seattle, WA 98112. 1055

Service Experience
A specialized family planning clinic was established by Planned Parenthood of Metropolitan Washington to explore
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teacher. It was also noted that small groups of about six or eight persons helped to bring out a number of issues for discussion, but that individual instruction and conferences were necessary to find out just what each person had learned. There were no unusual medical problems associated with contraceptive use among any of the women. All who accepted a method were in the raiige of mild to moderate retardation. Those who continued on oral contraceptives were reported to be taking them themselves, with monitoring by their institutional "cottage counselor" or nurse over a period of nearly one year. The two women who came to the clinic with guardians both had IUDs inserted. Surprisingly, for some of the clients, their visit to the family planning clinic provided them with their first pelvic and breast examination. Two clients were found to have suspicious breast lumps, two had previously undiagnosed high blood pressure, two had vaginitis, and three were found to be severely constipated. In all cases, the institutional staff member or guardian who accompanied the client was informed and referrals were made by the PPMW physician for treatment. There was no follow-up procedure. The general attitude of the clients who came through the special clinic was positive and cooperative. Of the 47 clients, only four declined to participate in any part of the program. Several clients expressed mild to moderate embarrassment talking about sex and their bodies, but this reaction was alleviated by the warmth and reassurance from the counselor that it was all right to talk about these things. Many of the clients expressed fear of the pelvic examination. Some would not lie quietly while the physician performed the examination. It was felt by the clinic administrator that if the patient could have used a mirror during the examination and the doctor shown each instrument to her, she.might have been more at ease. One of the interesting aspects of the clients' attitudes was that several of them seemed to regard contraception, especially oral contraceptives, as status symbols. Most were aware of and understood at least the general idea of conception and pregnancy, and many had the idea that contraception was practiced by nori-retarded people and that their use of contraception made them more like "normal" people. It was reported by institutional staff that a woman on oral contraceptives must derhonstrate the ability to take them regularly by herself or else she is switched to an IUD prior to release. This positive attitude toward contraception proved to be extremely helpful to the client and the counselor in communicating about family planning. In considering costs and benefits it was concluded that in a large, metropolitan area, recruitment efforts need not be as lowed keyed as initially thought necessary. Somewhere along the line, many people must have at least heard about the specialized clinic and the services being offered to mentally retarded persons, yet not one voice was raised in protest. Not many voices were raised in assent cither, but the issue, even if controversial, was apparently not the sort about which people protest publicly. There is obviously a readiness factor that must exist before people will utilize offered services. In terms of the mentally retarded, the readiness factor has to exist within the
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community of persons to whom care is entrusted. The large institution that sent most of the clients to the clinic had reached the action point on the readiness factor; the general community had not. It is hard to define what constitutes this readiness factor, but the ultimate ingredient is a perceived need for the service offered. Despite vigorous recruitment efforts few perceived a need for the service provided by the specialized clinic. It was concluded that a specialized clinic is not necessary to serve the number of handicapped persons who appear to be ready to accept a family planning service. Most people who are classified as mildly or moderately mentally retarded are capable of understanding conception, reproduction, and contraception. Clients who come to the clinic with a good background in sex education and contraception do not require any longer service time than a regular client; most mentally handicapped clients do not have such a good background, although they know how babies are made. In considering costs and benefits in serving hard-to-reach clients, note should be taken of the heavy financial burdens on the individual, the couple, and the community of an unwanted child, especially if that child is also handicapped by mental retardation. It was recommended that mentally handicapped clients be scheduled into the regular clinic sessions but that there should be someone on the staff trained to work with them. Informatioh and education for professionals, parents, and the handicapped themselves are needed to arouse community awareness and create a readiness factor for participation in family planning clinics. The issue of consent, which the experimental project only touched, needs further clarification. Because the special clinic had a consent process and because all clients came to the clinic with a guardian, there was no need to delve into this area. It may be more important if clients come to the clinic alone.

Concluding Note
Many of the previously mentioned conclusions and recommendations were voiced at a final seminar designed to exchange experience and make suggestions for action. It was recognized that unless the communitywhich includes parents, schools, and institutionsperceives a need and is willing to use the special services offered, there is little motivation for operating such facilities. The opinion of the seminar participants was that there is a need for sex education and family planning services for the mentally handicapped, and that many teachers, school and institutional administrators, and parents agree that there is a need but that, since no one yet knows how to meet this need directly and adequately, the issue is continually shuffled to the bottom of the priority pile and is rarely faced concretely. The broad recommendation is to increase community awareness that a qualified service provider, e.g.. Planned Parenthood, recognizes the need for sex education and family planning for the handicapped and is prepared to help meet this need when requested within the context of training persons handicapped by mental retardation for independent living within the community.
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FAMILY PLANNING FOR THE MENTALLY RETARDED

To implement recommendations, it was suggested that plans be developed to: (I) provide services for the handicapped within regularly scheduled family planning clinics; (2) train stafiF of selected family planning clinics in working specifically with handicapped clients to assure sensitivity and quality of service; (3) offer in-service training in sex education and family planning to institutional staffs and parent groups to prepare clients for more effective use of proposed services; (4) counsel with parents to alleviate anxieties and relate family planning to efforts to train their children for more socially satisfying life experience, heightened self-esteem, and independent community living; and (5) work with other local resources to increase community awareness to the legitimate needs of otherwise hard-to-reach handicapped persons and to sensitize the public to the costs and benefits within the context of responsible sexuality and prevention of unwanted pregnancies.

REFERENCE 1. David H. P. and Lindner, M. A. Family planning for the mentally handicapped. WHO Bulletin, 52:155-161, 1975.

ACKNOWLEDGMENTS This communication is based on the Final Report submitted by the National Children's Center, Inc., Washington, D.C. in fulfillment of Contract HSA 105-74-141 with the Office of Family Planning, Bureau of Community Health Services. A copy of the Final Report is available from the Technical Information Service, 5285 Port Royal Road, Springfield, VA 22161. The opinions expressed are those of the authors and do not necessarily reflect the views of the Bureau of Community Health Services, Health Service Administration, U.S. Public Health Service. Segments of the Final Report are based on drafts prepared by Planned Parenthood of Metropolitan Washington (Deborah J. Keplinger) and the American Institutes for Research (E. Patricia McCormick and Raymond L. Johnson). A selected Annotated Bibliography was developed by Dianne Reynolds.

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Accidents continue to be the leading cause of death among persons aged I to 38. More than 2,000 persons are killed in accidents each week, and the toll of non-fatal injuries among all age groups is extremely high. The Journal of Safety Research is a professional journal reflecting the most current scientific and technical work in the areas of traffic, industrial, home, farm, public, recreational, product, and system safety. It features authoritative articles submitted by persons in psychology, law, medicine, public health, engineering, and government. A quarterly publication, the Journal also features abstracts of completed investigations as well as listings of in-progress research. Manuscripts for possible publication arc welcome and are given rapid review by an editorial board of experts in the various areas of research. The Journal of Safety Research is available from the National Safety Council, 425 North Michigan Avenue, Chicago, IL60611. Annual subscription price is $24 in the U.S. and Canada. For subscriptions delivered to other countries, add $1.50. The order number is 085.01. Any communications regarding the Journal may be directed to the Editor, Gerald J. Driessen, PhD.

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