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Research Summaries

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Sex Education Programs for People With Mental Retardation

Original article authored by: Marita P. McCabe

This summary includes the following sections:

Introduction

In this review article (published in 1993), the author looks at the state of sexual education programs for people with developmental disabilities. The author outlines the opportunities and services needed by people with developmental disabilities. These opportunities and services include:

  • training to sufficiently develop satisfying close personal relationships,

  • information about sexuality, including sexually transmitted infections (STIs), reproduction and contraception, and

  • freedom to pursue an intimate relationship with another consenting adult.

The author examines the factors impacting the sexual rights of people with disabilities, such as: caregiver and parent attitudes, the individual’s needs and knowledge of sexual health issues, and the nature and adequacy of current sex education programs.

Sexuality and Sex Education

Perhaps as a result of society's discomfort with the sexuality of people with developmental disabilities, there has been relatively little research on the topic. Existing research indicates that many institutionalized individuals experience some sexual activity, though the range of behaviors is likely to be limited. This is most likely due in part to caregivers' suppression of the individuals’ sexual expression.

Even less research exists on the population of developmentally disabled individuals living in the community. One study by Timmers, DuCharme, and Jacob (1981) found that 65% of men and 82% of women with developmental disabilities had experienced sexual intercourse, though a much smaller number actually engaged in this activity with frequency. Unfortunately, problems such as small sample size, failure to describe severity of the disability, and reliance on caregiver reports of subjects' behaviors have undermined the strength of much of the research that has been done in this area.

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Attitudes Toward Sexuality

While sexuality is a normal part of development for all humans, society often views sexuality of individuals with developmental disabilities as a problem. As a result, these individuals' needs and rights are often ignored or denied. Studies indicate that the level of discomfort is so high that even mild displays of affection, tenderness and simple human touch are sometimes discouraged.

Researchers have explored the attitudes of both caregivers and parents. The findings on caregivers' attitudes are inconsistent. Those working within institutions often recognize that sexual activity exists, but they do not necessarily condone it. Group home staff are generally more liberal and accepting than institutional or nursing home staff (Brantlinger, 1983).

The variation in caregivers' responses may be partially explained by such factors as the setting in which the caregiver works, the selection and phrasing of questions asked of the caregiver, and the era and country in which data are collected.

For parents of children or adolescents with developmental disabilities, attitudes are influenced by concerns for the child's well being, lack of knowledge about how to provide sex education, and simple denial of the child's sexuality.

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Sexual Needs and Deinstitutionalization

Heshusius (1982), in his extensive interviews with people with mental retardation, found four common themes of concern or interest around sexuality:

  • enjoyment or anticipation of sexual contact,
  • anxiety about sexual contact,
  • the role of sex as it relates to marriage, and
  • lack of knowledge of basic facts.

Actual knowledge about sexuality and related topics varies among those living in institutional and non-institutional settings but is fairly low overall. Findings from two studies indicate that:

  • Adolescents living in the community, especially those in co-ed environments, have a slightly higher level of knowledge than those living in institutions. Further, mental age is a more accurate predictor of knowledge than IQ or actual age (Hall and Morris, 1976).

  • Both adolescents with and without disabilities have fairly low levels of knowledge, but those with disabilities are more likely to get their information from peers (often misinformed) than from more reliable sources like books. Thus, the access to accurate information is low, increasing the need for more comprehensive sex education programs for this population (Rogers and Watson 1980).

The recent trend towards deinstitutionalization of the developmentally disabled population calls for an extensive amount of program development in the area of sexual health. Such programs would need to include caregivers, parents, and community members as well as those individuals transitioning out of institutions.

Adequate resources are also needed to maintain the quality of community programs over time. Proper support and education for both parents or caregivers and individuals in transition are essential in order to reduce the risks of abuse and exploitation.

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The Need for Sex Education

In one study, basic nutrition, sex education, teen pregnancy, marriage and parenthood, developmental tasks, and decision-making were information needs identified by adolescents with borderline or mild mental retardation (Schulz and Adams, 1987). Over half of the adolescents in the study said their needs were currently unmet in these areas.

Homosexuality and masturbation, as well as appropriate means of sexual expression and the ramifications of inappropriate expression, should also be addressed in sex education curricula for this population (Smith et al., 1985). Lack of sex education may place persons with mental retardation at increased risk for unwanted pregnancy, STIs, and abuse, particularly when they are deinstitutionalized.

Many sex education programs have focused on development of sexual skills, improvement of sexual knowledge, or in-depth education on one issue. Many of these programs lack the evaluation or assessment data necessary to determine their adequacy or efficacy for this population. However, some evidence suggests that sex education programs for persons with mental retardation lead to positive changes in behavior modification and social skills development (Foxx, McMorrow, Storey, and Rogers, 1984; Mueser, Velenti-Hein, and Yarnold, 1987).

Rosen (1970) noted that programs have traditionally focused on suppressing inappropriate behaviors instead of reinforcing appropriate expressions of sexuality.

Hinsburger (1987) identified some important problems to be addressed in program curricula, including:

  • developing a strong self-concept and increasing personal power,
  • establishing peer relationship skills,
  • developing a positive attitude toward sexual behavior,
  • resolving feelings around past negative experiences, and
  • accepting sexual behavior by others in the individual’s environment.

According to Hinsburger (1988), successful programs would focus on respect for the client's history, improved knowledge and attitude change, assessment of the individual's home environment (whether parents and/or caregivers should be included in the program), and increased autonomy for the individual.

A thorough needs and knowledge assessment should also be completed. Programs should be personalized in order to meet individual needs. Until adequate programs are developed, the sexual rights of individuals with developmental disabilities cannot be fully met.

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Implications for Practice

  • Curricula should be comprehensive — not only to improve sexual knowledge and reduce risky or inappropriate behavior but also to develop self-esteem and personal empowerment and improve relationship, negotiation, and assertiveness skills.

  • Curricula should be presented in a format and manner that is appropriate and accessible to the individual given his or her disability.

  • Training and support are needed for caregivers and parents to:

    • help them overcome any discomfort they may have with this topic, and

    • enable them to better support the development of the individual's whole sexual being.

  • Adequate program evaluation and/or assessment must be implemented consistently to improve services and bridge the gap between research and practice.

McCabe, M.P. (1993). Sex Education Programs for People With Mental Retardation. Mental Retardation Journal. 31(6), 377-387.

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