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An Evaluation of a Community-Based Sexuality Education Program for Individuals with Developmental Disabilities
Discussion and Implications
This study evaluated and analyzed the sexuality education program Responsible Choices for Sexuality Program for Individuals with Developmental Disabilities. In addition, implications for the Responsible Choices Program and others interested in developing or evaluating similar programs are provided.
Self-Disclosure of Sexual Victimization and Perpetration
Over one-fourth (i.e., 28%) of the consumers have disclosed past sexual victimization during the program, while approximately 13% disclosed sexual perpetration in the past. These percentages may be underestimating the prevalence given that the program educators were not asking for self-disclosures. These findings are not surprising in comparison to other research studies looking at the prevalence of sexual victimization in this population. In a review of studies, Lumley and Miltenberger (1997) found the prevalence of sexual victimization of individuals with developmental disabilities ranged from 25% to 83%.
There are several reasons that the percentage for this population is high. According to Lumley and Miltenberger (1997), dependence of an individual with developmental disabilities on a caregiver or any familiar adult can be dangerous when the individual with developmental disabilities complies with any request (e.g., sexual request). Poor judgment and lack of social skills also poses a problem when the consumer is unable to respond appropriately in a dangerous situation. Finally, lack of education also contributes to the high percentage of sexual victimization of this population, especially when a situation is sexually abusive and the individual does not know how to protect oneself.
In regards to sexual perpetration, if an individual is not familiar with what is appropriate and inappropriate, then he/she is more likely to engage in perpetration. Hence, the value of educating individuals is apparent.
Because of self-disclosures, Responsible Choices makes arrangements for two educators to be present during Session 5 (i.e., Safety Awareness) so that if a disclosure is made during class, one educator may discuss the disclosure with the consumer while the other educator continues to teach the class. This practice should be commended. Given the number of self-disclosures it may be necessary for Responsible Choices (and other sexuality education programs) to have more staff available during discussions of sexual victimization and perpetration.
Support Persons' Knowledge
The support persons (e.g., support staff, family members) answered a significantly greater number of the items correct after the 4-hour, support person training (i.e., at post-test) than before the training (i.e., at pre-test). This finding indicates the support persons are significantly increasing their knowledge of sexuality and developmental disabilities after attending the training.
However, one item (i.e., "The more disabled a person is the lower his/her sex drive") was actually answered incorrectly significantly more at post-test by the support persons. Responsible Choices will need to examine how the information on this item is delivered in the support person training to ensure that support persons are understanding the information correctly.
The two items which showed no significance were: (1) "People with developmental disabilities do not desire as much physical touch as does a non-disabled person," and (2) "Generally, victims of sexual abuse are abused by people that they know." A vast majority of the support persons (i.e., 89% for the first item and 96% for the second item) answered these questions correctly on the pre-test which gives little room for a significant increase at post-test and hence, limits the possibility of positive change for a significant finding.
The Responsible Choices Program has a distinction from most other sexuality education programs for individuals with developmental disabilities because it provides training for both the individual with developmental disabilities and the support persons. Since the support persons' knowledge about sexuality and developmental disabilities significantly increased after the training, the Responsible Choices Program's inclusion of a support person training should be a model for other sexuality programs for individuals with developmental disabilities. This is especially important given that when support persons are more informed they (1) are less likely to have misperceptions about sexuality and disabilities, (2) are more likely to give accurate information to the people they serve, and (3) can continue to support the positive sexual development of the consumer even after the completion of the program.
Another possible implication of these findings is to extend this training to support persons in residential or community settings who do not have a consumer going through the program. Also, parents and other caregivers who have young children with developmental disabilities could benefit from this type of training.
Observed Sexual Expressions by Consumers
At pre-test, the support staff observed their consumer
engaging in only a few behaviors on the sexual expression scale. According
to Ludlow (1991), many people believe that individuals with developmental
disabilities are sexually perverted. However, the current findings illustrate
that the majority of individuals with developmental disabilities are not
engaging in most of the sexually inappropriate behaviors described in the
scale.
The current findings do indicate some inappropriate sexual behaviors that are being engaged in by the consumer. Specifically, the majority of consumers have been observed invading others’ private space and almost half have been observed kissing and/or hugging other people who are not family, friends, or significant others. These findings are not surprising given that support persons often invade consumers' private spaces, such as cleaning their face without asking, watching them dress, and so on. Also, appropriate barriers are not taught to consumers in regard to hugging and kissing. As one illustration, Special Olympics used to have "huggers" who would hug participants as they crossed the finish line, even though they were complete strangers. In other words, the public cannot expect individuals with developmental disabilities to learn appropriate rules for kissing and hugging when the public does not engage in appropriate rules when interacting these individuals.
Many of the other behaviors that were observed fall into this same category, such as (a) watching people when they are nude or undressing, (b) touching his/her own private parts in public, (c) touching another adult's private body parts in public, and (d) touching another adult's private body parts without permission. These inappropriate sexual behaviors may be learned from support persons, people around them, or television. In addition, many individuals with developmental disabilities have never been taught what is sexually appropriate or inappropriate in a manner they can comprehend or retain.
The Responsible Choices Program appears to be beneficial in increasing sexually appropriate behaviors. Specifically, the level of inappropriate sexual expression was significantly lower at post-test for 14 of the 36 behaviors. The remaining 22 behaviors did not show a significant change. However, since the consumers were not observed engaging in most of the inappropriate sexual behaviors, there was little or no room for significant change from pre-test to post-test. Also, the Responsible Choices Program may be helping support persons so that they are aware of their own interactions in relation to the consumers (such as invading their space and privacy).
Consumers' Knowledge of Sexuality
The consumers answered a significantly greater number of the items correctly at post-test than they did at pre-test. Also, the consumers answered a significantly greater number of the items correctly at post-test than they did at pre-test in each of the nine content domains: (a) Personal Care, (b) Social Etiquette, (c) Expressing Feelings in Relationships, (d) Safety Awareness, (e) Individual Sexual Expression, (f) Dating, (g) Sexual Expression in a Relationship, (h) Illegal Sexual Acts, and (i) Pregnancy and STDs.
The consumers seem to be retaining the information in each of the domain areas at post-test approximately 6-8 weeks after the program. Hence, it appears that consumers are learning more about all aspects of sexuality.
However, it is possible that IQ and time between the program and post-test could impact the ability to retain knowledge. Therefore, one research implication is for future evaluation efforts to examine whether knowledge increased from pre-test to post-test while controlling for IQ and time. If either of these control variables impacts the level of significance, then implications can be suggested for program modifications. For example, if time diminishes the significance, then one suggestion would be to provide a “refresher” training for the consumers. If IQ decreases the significance, then those consumers with lower IQ may need additional training. However, even saying this, Edmonson and colleagues (1998) determined that IQ level was not a limitation on sexuality knowledge, but knowledge scores were related to gender, place of abode at the time of testing, experiences, instruction received, and interest. Therefore, future research may want to consider these variables as possible covariates.
Regardless, the Responsible Choices Program appears to be significantly increasing consumers' knowledge of (a) identification of body parts and appropriate hygiene, (b) responsible relationships and appropriate expression of feelings, (c) appropriate social-sexual behavior, (d) sexual abuse prevention, (e) prevention of pregnancy and sexually transmitted disease, and (f) appropriate and safe sexual behaviors.
Support Persons' and Consumers' Satisfaction with the Responsible Choices Program
One important measure of the success of a program is whether the participants feel that they benefited from the program. Hence, a satisfaction survey was developed for the consumer and his/her support person(s). The mean average for both support persons' and consumers' satisfaction was 4.70 and 4.63, respectfully, on a scale ranging from 1 (low satisfaction) to 5 (high satisfaction).
Cleary, the participants feel that they are benefiting from the program. For example, one support person commented, "Every staff person should be required to have this training before working with consumers."
A suggestion for the Responsible Choices Program would be to add more qualitative questions to the satisfaction survey to assess what components of the program were most beneficial and what components could benefit from change.
Limitations
Although the results of this study provide important information for understanding the impact of the Responsible Choices Program, certain limitations do exist. First, the validity of the assessment instruments has not been established. Next, the time between the pre-test and the program, as well as between the end of the program and the follow-up, is not consistent due to scheduling conflicts of the program educators, support persons, and consumers.
According to Myers-Walls (2000), bias is frequent if those conducting the evaluation rely on the outcomes of the evaluations in order to maintain their employment or funding. However, the program administrator of Responsible Choices obtained outside evaluators to analyze the data collected from the program to provide decreased potential for bias in the analyses.
Lastly, the generalization of the evaluation results is limited because the consumers that participate in the Responsible Choices Program are a fairly homogeneous group as determined by the geographic region in the United States of the program.
Conclusions
This study evaluated and analyzed the Responsible Choices Program, a program which is based on the belief that persons with developmental disabilities are sexual beings and deserve to be empowered with accurate knowledge and skills to assist them in their natural sexual development and to avoid sexual victimization and perpetration.
The findings demonstrate a significant increase in the consumers' and support persons' knowledge of sexuality for persons with developmental disabilities. In addition, there were significant decreases in support persons' observations of inappropriate sexual expressions from pre-test to post-test. Although there were some behaviors where no significant changes in inappropriate sexual expressions were identified, this is due to a very small percentage of consumers engaging in certain sexual expressions at pre-test, therefore the potential for change would be minimal.
Along with an increase in knowledge for both consumers and support persons, there was a high level of satisfaction of both groups with the program. Clearly, the Responsible Choices Program for Individuals with Developmental Disabilities has demonstrated that it is addressing and meeting the needs of its community, with increases of knowledge from its participants, decreases in inappropriate behaviors, and high satisfaction with the program.