Sexuality Education for Persons with Developmental Disabilities: Selected Resources

Description

Sources of advice on sexuality in individuals with developmental disabilities

Conventional sexuality materials for parents often fail to address the concerns of the parent of a child with a disability. Families and service providers alike may not even be sure that sexuality education is an important feature of caring for and educating the child with a disability, particularly if the child’s disability is cognitive or developmental in nature. The goal of this article is to point the reader to selected readily available references on sexuality education for persons with developmental disabilities.

Web Resources

These sexuality resources on the Internet are easy to access and do not require user registration. If the web site listed is not available, try searching for the organization through a good search engine such as Google.

AAP Policy Statements

The American Academy of Pediatrics has two policy statements relative to sexuality education. Both the 2001 policy statement “Sexuality Education for Children and Adolescents” and the 1996 policy statement “Sexuality Education of Children and Adolescents With Developmental Disabilities” are available online.

SIECUS

A good starting point for sexuality resources in general are the web sites for the Sexuality Information and Education Council of the United States (SIECUS) and Planned Parenthood. From the SIECUS home page, users can link to a listing of informative annotated bibliographies including Sexuality and Health, and Sexuality and Disability. Both include print resources, web sites, vendors, publishers, and organizations.

These bibliographies were originally published in the SIECUS Reports of February/March 1999 and February/March 2001, respectively, and are fairly up to date. Unique among sexuality education resources is a link from the SIECUS home page to an entire section for religious institutions. From this page, users can link to an annotated bibliography on Religion, Spirituality, and Sexuality as well as other web pages on religion and sexuality. This material is not adapted or customized for persons with disabilities but may nonetheless be of interest.

NICHCY

“Sexuality Education for Children and Youth with Disabilities” from NICHCY, the National Information Center for Children and Youth with Disabilities remains mostly relevant despite its age. Sections include information on defining sexuality and how it develops, social skills, teaching children about sexuality, affects of disability on sexuality, and relationship issues for young adults. A final section includes information on sexual orientation, reproduction, birth control, protection against sexually transmitted diseases, sexual exploitation, and sexual abuse. The long resource list is useful.

Print Resources

Sexuality, Your Sons and Daughters with Intellectual Disabilities

Several print resources in particular deserve special mention. “Sexuality, Your Sons and Daughters with Intellectual Disabilities” by Karin Melberg Schwier and Dave Hingsburgher (2000, Brookes Publishing, 800-638-3775) is a readable and comprehensive resource that is uniquely respectful of persons with disabilities of all ages and abilities. The book’s chapters include “Hold Me Tight”, “Put Me Down”, “Leave Me Alone”, and “Let Me Go”; the authors skillfully interweave first person vignettes from parents and from persons with disabilities with the text and their own stories.

The final section of the book consists of 17 pages of recommended resources. If a parent or professional is only going to obtain one of the resources listed in this article, this should be the one.

Circles

Nearly all resources for sexuality education for persons with developmental disabilities refer to the Circles programs by Marilyn P. Champagne and Leslie W. Walker-Hirsch (1993, Circles I: Intimacy and Relationships [revised]; 1986, Circles II: Stop Abuse; 1988, Circles III: Safer Ways; James Stanfield Publishing, 800-421-6534). This curriculum is designed for use with persons with mild to moderate developmental disabilities.

The program guides learners in identifying the physical conduct appropriate for persons in a series of concentric circles, working outward from the center which is the most intimate level of physical contact. A few persons may be in the “close hug” circle while others are in the “wave” circle and still others in the “stranger” circle. This curriculum may be more costly than families can afford but once purchased by an agency or organization would be very useful for many years to come.

Socialization and Sexuality

Originally published in 1973, Winifred Kempton’s training guide was completely revised in 1998 with the publication of “Socialization and Sexuality, A Comprehensive Training Guide for Professionals Helping People With Disabilities That Hinder Learning” (1998, Program Development Associates, 800-543-2119).

In one handbook, Ms. Kempton and her associates Toni Davies and Lynne Stiggall-Muccigrosso provide a breadth of information from setting up “train the trainer” sessions to identifying key content areas for sexuality education to evaluating outcomes. In addition to the resources identified at the end of each of the 14 chapters, a 28 page bibliography makes the Guide a treasure for anyone planning for or already providing sexuality education.

Sexuality Education for Individuals Who Are Deaf-Blind

In “An Introduction to Sexuality Education for Individuals Who Are Deaf-Blind and Significantly Developmentally Delayed”, Kate Moss and Robbie Blaha provide practical information and advice for those working with individuals with multiple sensory impairments and other disabilities. The focus of this book is relatively narrow compared to the other resources noted here. Its usefulness lies in the straightforward formulation of issues such as modesty, appropriate touch and personal boundaries, menstruation, masturbation, sexual health care, and sexual abuse.

The final chapter consists of annotated references and readings related to sexuality education. The entire document can be viewed online. Print or CD-ROM copies can be obtained by contacting the National Information Clearinghouse on Children Who are Deaf Blind, DB-LINK (voice 800-438-9376, TTY 800-854-7013).

Summary

A variety of high quality, low to moderate cost, and accessible resources exist for families and service providers both on the Internet and in print. The resources listed in this article are by no means the only good resources. They do provide a starting point for learning more about this important aspect of caring for children and adolescents with developmental disabilities.

Maryanne Loebig MSN CRNP is a pediatric nurse practitioner in Pittsburgh PA. For the past ten years she has been the Clinical Coordinator for Student Health Services at the Western Pennsylvania School for Blind Children in Pittsburgh.

She holds an adjunct faculty appointment at the University of Pittsburgh School of Nursing and is on the auxiliary faculty for the University, Community, Leaders and Individuals with Disabilities Center (UCLID Center) of the University of Pittsburgh. Her email address is mloebig@wpsbc.org.

Originally published in Development and Behavior News

References

Frankowski, BL. Sexual Orientation and Adolescents. PEDIATRICS Vol. 113 No. 6 June 2004, pp. 1827-1832 [136]
Committee on Children with Disabilities (1 Feb 1996) Sexuality education of children and adolescents with developmental disabilities Pediatrics 97 (2) : 275-278 [137]