To obtain information regarding sexual behavior and related policies in state residential facilities for individuals with mental retardation/developmental disabilities, we sent surveys to 168 members listed in the Association of Public Developmental Disabilities Administrators 1998–1999 directory. Response rate was 68.5%. For the 46 facilities where 50% or fewer of clients had profound retardation, sexual relations between clients was reported to occur “sometimes” or “often” by 29 (63%). Six of 115 (5.2%) administrators reported at least one client with a sexually transmitted disease (STD) in the past year. Of 110 instances of sexual abuse reported, the perpetrator was another client in 63% of cases. Ninety-six percent of administrators (n = 110) reported their facility had written guidelines concerning sexual abuse. Careful monitoring of STDs and the effectiveness of sex education will be instrumental in preventing HIV/STDs and helping prevent sexual abuse in this vulnerable population.
It is estimated that approximately 1.58% of persons in the general United States population exhibit mental retardation and/or developmental disabilities (Larson et al., 2000). Of this group, approximately 47,000 individuals live in state-operated Intermediate Care Facilities for the Mentally Retarded—ICFs/MR (Prouty, Smith, & Lakin, 2001). Persons with mental retardation and/or developmental disabilities are sexual beings. Surveys documenting sexual activity (Deisher, 1973; Mulhern, 1975; Timmers, DuCharme, & Jacob, 1981) and sexual abuse (Brown, Stein, & Turk, 1995; Furey, 1994; Furey, Niesen, & Strauch, 1994; Turk & Brown, 1993) in this population have been conducted. Clearly, sexual activity and sexual abuse puts individuals at risk for sexually transmitted diseases (STDs), including human immunodeficiency virus (HIV). For example, in a survey sent to departments providing services to persons with mental retardation/developmental disabilities in the United States, Marchetti, Nathanson, Kastner, and Owens (1990) found that 45 individuals were reported as being infected with HIV. Two years later, in a follow-up survey, Kastner, Nathanson, and Marchetti (1992) showed that number more than doubled to 98 persons. Although there is a literature addressing issues of sexual behavior, sexual abuse, and STDs of individuals with mental retardation/developmental disabilities, still very little is known. There are no recent studies regarding these issues involving a national sample from the United States, despite the public health importance of such data.
Individuals with mental retardation/developmental disabilities may comprise a group at risk for STDs due to their compliance with authority figures, dependency, lack of sexual knowledge, and limited functional ability (Sobsey & Mansell, 1990; Zirpoli, Snell, & Loyd, 1988). Our purpose in the present survey was to gather information from residential facility administrators regarding (a) the perceived frequency of consensual and nonconsensual sex between clients; (b) the incidence of pregnancy and reported STDs at their institutions; (c) the training of clients and staff in the area of sexual behavior and recognition and reporting of sexual abuse; (d) the use of condoms and contraceptive methods by clients; (e) the existence of institutional policies regarding pregnancy, sexual abuse, STDs, and HIV; and (f) specific instances of sexual abuse. The survey included 57 questions, several of which were taken directly from the surveys administered by Mulhern (1975) and Turk and Brown (1993) so that direct comparisons could be drawn. Because Mulhern's questions were written over 25 years ago, the wording of those questions do not always convey the fact that persons with mental retardation/developmental disabilities are sexual beings and that this aspect of their lives should be supported, not “dealt with” or “managed.” However, to be consistent with the Mulhern study, when reporting on the results, we used the wording associated with the original questions. We apologize for the perceived lack of sensitivity. We note that state residential facilities for persons with mental retardation/developmental disabilities are in a state of transition; these individuals are being re-assigned from institutions to community homes. Thus, results of this survey represent only a snapshot in the process.
Surveys were sent to the 168 members of the Association of Public Developmental Disabilities Administrators listed in their 1998–1999 directory. Approximately 80% of state residential facility administrators belong to this association. The members were directors of facilities in which seven or more persons with mental retardation/developmental disabilities resided. The one facility with only seven clients was in the process of closing (explaining the low number of clients).
The president of the Association, in collaboration with the Centers for Disease Control (CDC), mailed the surveys. The former handled the receipt of the surveys to ensure confidentiality, meaning that no one else could link respondents to their survey responses. The initial mailing consisted of (a) a letter sent by the president describing the purpose of the study, (b) the survey form, and (c) a self-addressed response envelope. Included in the letter was a statement that participation was completely voluntary and that members could, without any penalties, choose not to participate or could skip any questions that made them feel uncomfortable. A number was associated with each survey form so that the president of the Association could contact those administrators who had not returned a form. Approximately 6 weeks after the initial mailing, a post card was mailed to the administrators who had not yet responded to remind them to return the completed survey. The post card mailing was followed by a phone call to the administrator's office one week later to assure receipt of the survey. If requested, the survey was faxed to the administrator's office. The CDC received the surveys from the president with no identifying information. The numbered list that linked each questionnaire to a facility was destroyed 3 months after the initial mailing.
A pilot study was conducted prior to the formal mailing. Fourteen board members of the Association were given the survey to complete anonymously and asked to offer comments. All comments from the 10 returned surveys were incorporated into the final version and helped to clarify the questions. These data are not included here.
The majority of the 57 questions were multiple choice and pertained only to individuals with mental retardation/developmental disabilities over 18 years of age. Many of the questions were taken directly from the survey conducted by Mulhern (1975). General areas covered by the survey included (a) the perceived frequency of consensual and nonconsensual sex between clients (e.g., How often do you think consensual sex occurs between clients? Never, rarely, sometimes, often); (b) the incidence of pregnancy and reported sexually transmitted diseases at their institutions; (c) the training of clients and staff in the area of sexual behavior and recognition and reporting of sexual abuse; (d) the use of condoms and contraceptive methods by clients; (e) the existence of institutional policies regarding pregnancy, sexual abuse, STDs, and HIV; and (f) specific instances of sexual abuse.
Administrators were asked to provide detailed information on the two most recent cases of sexual abuse. The definition of sexual abuse for the purpose of the survey was adapted from Turk and Brown (1993), who adapted their definition from Sgroi (1989):
Sexual abuse occurs when the perpetrator exposes his/her genitals or looks at or touches certain parts of the victim's body or requires the victim to perform sexual acts and when one or more of the following apply: the second person 1) withholds their consent; 2) is unable to give their consent because the severity or nature of their learning disability [mental retardation] severely affects their understanding of the basic elements of sexual behavior, 3) some other barrier to consent is present for the victim which means that they are unduly pressured in this specific situation, including: the presence of a parental, familial, caretaking or other authority relationship between the persons involved; the use of force, a weapon or the threat of injury or punishment by the first person; the abuse of a power relationship which precludes consent by the weaker person. (pp. 197–198)
We note that sexual abuse can include noncontact abuse (i.e., voyeurism, pornography, indecent exposure, and verbal harassment).
In addition to questions pertaining to sexual relations and sexual activity among clients at their facility, administrators were also asked to indicate their own gender, how long they had been employed at the facility, how long they had been in their present position, the number of male and female adult clients residing at the facility, and approximately what percentage of their clients had mild (IQ = 55–70), moderate (IQ = 40–54), severe (IQ = 25–39), or profound (IQ = < 25) mental retardation. (The full survey is available from the first author.)
All data collected on the survey forms were coded, stored, and analyzed using SAS V8 (1999–2000, SAS Institute Inc., Cary, NC). A portion of the data was summarized and stratified by institutions with 50% or less and over 50% individuals with profound mental retardation/developmental disabilities due to the differences in reported sexual behavior. The reason for this is because more than twice as many administrators of facilities with more than 50% of their clients exhibiting profound mental retardation (80%) versus those with less than or equal to 50% (37%) reported consensual sex between clients occurring never or rarely. For some questions regarding sexual abuse, respondents could check more than one choice; therefore, percentages do not necessarily add to 100%.
Of 168 surveys, 115 were returned (response rate = 68.5%). Thirty-eight of the 50 states from all four regions of the country (Northeast, Midwest, South, and West) were represented.
Of the administrators who responded, 67% were male and 33% were female. These administrators (superintendents or directors) had been employed at the facility for a mean of 15 years (standard deviation [SD] = 9, median = 13, range = 1 to 36) and in their positions for a mean of 7 years (SD = 6, median = 5, range = 0.2 to 22). The mean number of clients at responding facilities was 262 (SD = 211, median = 200, range = 7 to 878), with a mean of 63% males (SD = 13, median = 61%, range = 0 to 100%) and 37% females (SD = 13, median = 39%, range = 0 to 100%). With regard to level of functioning, administrators reported that a mean of 54% of residents had profound mental retardation (SD = 28, median = 60%, range = 0 to 100%); 19%, severe (SD = 12, median = 18%, range = 0 to 65%); 14%, moderate (SD = 14, median = 10%, range = 0 to 90%); and 13%, mild (SD = 19, median = 5%, range = 0 to 86%) Data on level of functioning were not available from 5 administrators. For 38% of the administrators who responded (13 administrators did not respond to this question), there was a state law against sexual relations between clients; all had state laws against sexual abuse. With regard to written policies, 95% of those who responded had written policies covering sexual abuse, and many had written polices to address HIV (77%), STDs (56%), and pregnancy (38%). Thirty percent had written policies for all of these, and 4% had policies for none of these.
Procedure Used to Address Sexual Relations Between Clients
When asked to describe the institutional procedure used for addressing sexual behavior at their institutions, 61% of administrators responded that the institution had a clearly delineated set of guidelines covering as many aspects of sexual behavior as could be expected to occur, 7% used a regularly convening panel to deal with sexual problems as they arose (no guidelines), 3% responded that they had no guidelines, and 29% chose “other” (1 response was missing). When asked to describe the best procedure for dealing with sexual behavior, 69% responded that it would be best to have a clearly delineated set of guidelines, 9% said a regularly convening panel, and 22% said “other” (2 missing).
Staff and Client Training
Nearly all respondents (99%) reported that prior to starting their jobs, staff members were screened for criminal behavior. Most (86%) reported that staff members were trained to recognize and report sexual abuse before starting their jobs. Twenty-four percent of those responding reported that staff received both yearly and “as needed” training to recognize and report sexual abuse in addition to preemployment training. Only 7% reported that staff members were trained on an “as needed” basis, and only 1% reported that staff members were not trained. Almost all respondents (88%; 4 missing) reported that clients were offered sex education, which was reportedly offered to clients with mild (100% of facilities), moderate (84% of facilities), and severe (63% of facilities) mental retardation/developmental disabilities. There was no option for clients with profound mental retardation/developmental disabilities (IQ < 25) because of the assumed limitation in comprehension. This may have been an erroneous assumption by the authors of the survey given that it has subsequently been pointed out that these individuals could benefit from some types of training.
Use of Contraception
Sixty-five percent of respondents reported that their female clients used contraception to prevent pregnancy and not for other medical reasons (1 missing). Table 1 shows the percentage of institutions reporting that a given type of contraception was used by their clients. A single pregnancy in the last year was reported by each of three responding facility administrators (2.8%; 3 missing).
Reported Occurrence of STDs in the Last Year
Six responding facilities of 115 reported one or more instances of an STD in the last year: a single instance of genital herpes (2/115), a single instance of genital warts (2/115), two instances of genital herpes and one instance of genital warts (1/115), and a single instance of syphilis (1/115). No cases of HIV were reported.
Sexual Behavior and Condom Use in Facilities With 50% or Fewer Clients With Profound Mental Retardation
Analyses of survey responses pertaining explicitly to sexual behavior were restricted to the 46 facilities (40%) with 50% or fewer clients with profound mental retardation (5 missing). Administrators were asked to categorize the extent to which sexual behavior represented a major, significant, minor, or no problem in management and caring for clients. Sexual behavior between clients was reported to be a significant problem for 37% of the facilities responding; none replied that it was a major problem, 57% replied it was a minor problem, and 7% replied it was no problem. Sexual behavior between clients and staff members was reported to represent a major problem for 2%, a significant problem for 4%, a minor problem for 22%, and no problem for 72% of the facilities responding. Over half of those responding reported that consensual sexual relations between clients occurred sometimes (48%) or often (15%); 4% reported it never occurred and 33% reported it rarely occurred. Seventeen percent reported that abusive sexual relations between clients sometimes occurred (4% never, 78% rarely, 0% often). Condom use by clients was reported to occur sometimes by 28% or often by 2% of those responding (33% never, 37% rarely), although 61% (n = 46) reported availability of condoms at the institution health clinic. This is in contrast to the 22% of institutions with more than 50% of their clients having profound mental retardation that had condoms available from the institution health clinic. As can be seen in Table 2, respondents varied in their responses to questions as to whether certain sexual behaviors occurred, are permitted to occur, and should be permitted to occur (meaning not currently permitted).
Cases of Sexual Abuse
Administrators (N = 115) were asked to provide details of the most recent two instances of sexual abuse that occurred at their facility. A total of 110 cases were reported; most occurred in 1999, but other cases occurred one or more years prior to the survey, with the oldest happening in 1986. Forty-three respondents each provided details on two cases of sexual abuse, and 24 provided details on one case. In 90% of the cases, the perpetrator was a male, and in 65% of the cases the victim was a male. Perpetrators had a median age of 35 years (range = 16 to 73), and victims' median age was 33 years (range = 14 to 90). In 2 cases there were multiple male perpetrators (2 and 3), and in 3 cases there were multiple (3) female perpetrators. The perpetrator was most often another client (63%), although in 28% of the cases, it was a staff member or volunteer, and in 1% it was a family member; for 7%, the type of perpetrator was indicated as “other” (1 missing). The functioning level of the victim was as follows for the cases reported: mild (21%), moderate (39%), severe (31%), and profound (9%) mental retardation (2 missing).
Abuse was reported to occur in the victim's residence (42%); the perpetrator's residence (6%); in both the victim's and perpetrator's residence (23%); and, to a lesser extent, in other places, including public toilets, day placement, in transport, or “other” (29%). The type of abuse reported included touching (36%), penetration (21%), noncontact abuse (11%), attempted penetration (6%), masturbation (3%), other (6%), and combinations of these (17%). The abuse was discovered most often because the victim disclosed it (45%), it was witnessed (37%), medical evidence was found (2%), and for other reasons (17%). The action taken as a result of the abuse varied. The following actions were reported, alone and in combination, most frequently: in-house investigation (73%), reported to the police (54%), victim provided with medical/mental health care (60%), and victim tested for STDs (23%). A formal disciplinary hearing (9%) and going to court (6%) did not account for a large portion of the responses. Other action taken was reported in 28% of the cases, and no action taken was reported for 4% of the cases. People or agencies reported to be involved in the sexual abuse case included (by percentage of respondents reporting): police (49%), health care provider (26%), hospital emergency department (25%), mental health service provider (23%), health department (17%), rape crisis center (12%), and other (35%). Finally, of the 110 cases of sexual abuse detailed, conviction (7%) and dismissal (24%) together accounted for less than a third of the outcomes (15%, none; 65%, other). Of the three choices pertaining to the outcome for the victim (STD, pregnancy, or other), only the choice other was chosen (62%). Examples of other include moving the victim to another bedroom and limiting contact with perpetrator, sex education, and counseling.
There has been a trend over the last 2 decades toward moving individuals with mental retardation/developmental disabilities into community residences. However, there are some individuals, mostly those with profound retardation, who remain in institutional settings. Persons working with individuals who have mental retardation/developmental disabilities are responsible for helping them reach their full potential. This includes helping them to express themselves sexually as well as protecting them from harm (Sundram & Stavis, 1994). Because these individuals are sexual beings, they are at risk for STDs in the same way as other populations (Welner, 2000). In the present study, instances of STDs in the last year were reported by 5% of responding facilities. However, because most STDs are asymptomatic and can be detected only by screening tests, these data most likely underestimate the occurrence of STDs; in this survey, no information regarding screening practices was collected.
As previously noted, several questions in the present survey were taken from a 1975 survey by Mulhern of sexual behavior and policies in 82 residential facilities for individuals with mental retardation. Almost two thirds of administrators of facilities with 50% or fewer of their clients having profound mental retardation/developmental disabilities reported that sexual relations between clients occurred sometimes or often, indicating the frequency of sexual expression in this population. Results from the present survey show that sexual behavior is not perceived as a “significant problem” for most administrators of facilities with 50% or fewer of their clients having profound mental retardation/developmental disabilities. Thirty-seven percent of respondents for these facilities reported that sexual behavior represents a significant problem in the management and care of clients, similar to the 42% reported in Mulhern's (1975) survey. Moreover, our results suggest that two thirds of clients living in these facilities generally do not use condoms, although more than half of the respondents reported that condoms were available from the institution clinic. Mulhern (1975) did not collect information on condom use. This indicates that education, including peer discussion groups, could be improved to increase correct and consistent condom use. This becomes increasingly important as the risk of HIV infection among persons with mental retardation/developmental disabilities increases (Kastner et al., 1992; Marchetti et al., 1990). An investigation of a case of HIV transmission between clients in a residential facility determined that it was unclear whether sexually active residents had been educated as to safe sex practices and, if so, whether they were using them (Chura, 1992).
Almost all facilities reported having written guidelines for sexual abuse. When asked to describe what procedure is used for “dealing with sexual behavior at their institution, 61% responded that they followed a clearly delineated set of guidelines that cover as many aspects of sexual behavior as could be expected to occur. In contrast, only 23% of respondents to Mulhern's 1975) survey chose this answer. This indicates a greater awareness of sexual activity between clients and an awareness of the various consequences of unprotected sexual behavior as well as the need to have standard guidelines.
Nearly all respondents reported that staff members were trained to recognize and report sexual abuse before they started their jobs and that clients were offered sex education. Providing training to staff members is important because if no training or guidelines are provided, they will respond to suspected cases of sexual abuse based on their own attitudes and opinions (Brown & Craft, 1987). Adults with mental retardation/developmental disabilities are sexual beings who may engage in sexual behavior with other adults with mental retardation as well as those without mental retardation. Many individuals with mental retardation/developmental disabilities have the mental and emotional capacity to develop and maintain intimate relationships (Sundram & Stavis, 1994); others do not but could be at risk for sexual abuse. Sex education is a necessary part of human development for individuals with mental retardation as well as those without. Appropriate sex education may help in preventing sexual abuse (Sobsey & Mansell, 1990) in this population and in reducing the risk of STDs, including HIV. A good example is the AIDS Education and Skills Training Program given to persons with mild developmental disabilities. This program is focused on behavioral risk reduction and includes specific training on the correct use of condoms (Scotti et al., 1997).
A greater permissiveness for some sexual behaviors was noted when compared to Mulhern's (1975) results. In our study, a larger percentage of administrators of facilities with 50% or fewer individuals with profound retardation reported that sexual behaviors, ranging from kissing between heterosexuals to intercourse between females, was permitted and should be permitted than were reported in Mulhern's previous survey 25 years prior to this one. For instance, 45% in the present study reported that heterosexual intercourse was permitted as compared to 8% in Mulhern's survey, and 65% in the current survey reported that it should be permitted as compared to 41% previously. This indicates an overall greater acceptance of the sexuality of clients.
Surveys of sexual abuse of individuals with developmental disabilities or mental retardation have been conducted in the United Kingdom (Brown et al., 1995; Turk & Brown, 1993) and, to a more limited extent, in the United States (Furey, 1994). Similar to other reports (Brown et al., 1995), results of the present survey showed that most abuse takes place in the victim's or perpetrator's residence and that the perpetrator is usually known to the victim, and is most often another client. Clients may represent the largest proportion of perpetrators because they are less likely to keep the abuse secret or find a private place to carry out the abuse as compared to perpetrators who do not have mental retardation (Brown & Stein, 1997). It is important to note in the present study, however, that in 28% of the abuse cases, the perpetrator was a staff member or volunteer. Furey (1994) investigated the issue of sexual abuse of individuals with mental retardation in the United States, specifically in Connecticut, and found results comparable to those in the United Kingdom study. She also discussed the important fact that abuse was reported mostly by the victim; thus, instances of abuse where the victim cannot talk are likely underreported.
Our findings support other reports that consensual sex as well as sexual abuse occurs in state facilities, though is likely underreported. To address these issues in the most effective manner possible, administrators should pay particular attention to the interface between practitioners and clients, for instance by assuring that staff members are trained on policy issues and how to monitor sexual abuse incidents on a regular basis using competency-based training. In addition, administrators might want to consider whether their facility policies adequately cover the following: (a) sexual contacts; (b) sexual abuse; (c) checking or screening for STDs and on what basis or time schedule checking should occur; (d) to whom should the incidents of sexual abuse be forwarded and under what circumstances; (e) what sex education for individuals may be needed—both for individuals who can communicate and those who cannot; (f) what rights and confidentiality issues are present for individuals under both state and community agencies; and (g) especially for community agencies, does the agency policy on sexual behaviors match current national thinking? Administrators might also want to consider whether the federal government (Health Care Financing Administration—HCFA) should monitor instances of STDs in addition to their plan to monitor the use of restraints and injections given for behavioral problems.
There are at least eight limitations to this study. First, although the survey was mailed to the director or superintendent of the state residential facility by name, we have no way of knowing if that person did, in fact, fill out the survey because the responses were anonymous. In some cases, the survey may have been passed to another person perhaps deemed to be more knowledgeable of sexual behavior issues of the clients. Second, those administrators who did not respond may be different than those who did. For instance, those who did not respond may have been more likely to have had a larger number of sexual abuse incidents or cases of STDs at their facility. Third, although the survey responses were kept confidential, the respondents may have been biased in their responses, for instance not reporting instances of abuse. Fourth, no question was formulated to assess the quality of client sex education or staff training. Fifth, the number of STD cases (including HIV) are likely underreported, and, unfortunately, we failed to include a question regarding whether screening for STDs was carried out and. if so, how frequently. Sixth, our survey was focused on institutions and did not include residential homes for persons with mental retardation/developmental disabilities living in the community. Seventh, in the survey respondents were not asked for detailed information on all instances of sexual abuse, only the two most recent instances. Finally, although we attempted to restrict analyses of some questions to facilities with more than half of their clients comprised of persons with mild, moderate, or severe mental retardation (not profound), it may be that the population referred to in this aspect of the present study is different from the populations referred to in the other studies used for comparison purposes.
We chose to survey state residential facilities for individuals with mental retardation/developmental disabilities; however, we realize that in the United States approximately 719,000 persons with mental retardation/developmental disabilities are living in the community in various residential situations, including living with family members (Prouty et al., 2001). Information pertaining to sex, STD education, and sexual behaviors (including condom use) among persons with mental retardation/developmental disabilities living in the community is lacking. In one survey of 27 adults with mild mental retardation living in the community, 67% reported being sexually abused at least once before the time of the survey (Stromsness, 1993). This finding indicates that surveys of this population would be extremely informative in providing a more complete picture of the status of safe sexual behavior, sex education, STDs, and sexual abuse so that appropriate services could be provided as well as offering a context for the present results.
In conclusion, attempts to examine the incidence of sexual behavior, consensual or abusive, in a population of persons with mental retardation/developmental disabilities, whether institutionalized or community based, is enormously challenging. There are at least three reasons for this challenge. First, administrators of institutions who are surveyed may be reluctant to fully cooperate due to privacy and potential liability issues. Second, when surveying persons with mental retardation/developmental disabilities, it may be difficult reaching them, and all persons may not be capable of providing accurate and reliable information. Third, to conduct a study with a meaningful sample size requires the cooperation of one or more large associations or organizations. Nonetheless, it is vital that we improve our understanding of this area to develop programs to minimize sexual abuse and negative consequences of consensual sex, such as STDs, as well as develop programs to enrich the lives of persons with mental retardation/developmental disabilities. Such work must be done with the utmost sensitivity, recognizing the distinct individuality of these persons and their privacy rights.
NOTE: We are indebted to all of the persons who contributed information to this survey. Appreciation is extended to Robin Puett for her valuable contribution to the survey design (National Center for Injury Prevention and Control, Division of Violence Prevention), and to Robert Prouty (University of Minnesota Research and Training Center on Community Living) and Ileana Arias (National Center for Injury Prevention and Control, Division of Violence Prevention) for their constructive comments on an earlier version of the manuscript. D. Gust was an officer in CDC's Epidemic Intelligence Service at the time of the analysis.
Authors: Deborah A. Gust, PhD, MPH, Behavioral Scientist ( firstname.lastname@example.org), National Immunization Program, Susan A. Wang, MD, MPH, Medical Officer, Division of STD Prevention National Center for HIV, STD and TB Prevention, Ray Ransom, MPH, Director of Informatics, Centers for Disease Control-Uganda, and William C. Levine, MD, MSc, Associate Director for Global AIDS Program/Thailand, Centers for Disease Control and Prevention, 1600 Clifton Rd. NE, Atlanta, GA 30333. James Grot, PhD, Former Director, Jack Mabley Center, 1120 Washington Ave., Dixon, IL 61021