The October 2001 edition of ReCAPP focuses on:

Educating Youth with
Developmental Disabilities

It includes the following sections:

This edition of ReCAPP focuses on how we, as educators, can best meet the sexuality education needs of young people with mental or emotional disabilities.

Developmental disability is a significant, chronic condition due to a mental and/or physical cause that begins before age 22 and results in substantial functional limitations. (The Waisman Center, University of Wisconsin)

Definitions shift slightly from agency to agency. Many states base their definition on the Federal Individuals with Disabilities Education Act (IDEA), identifying eligibility criteria for public assistance. In these cases, "developmental disability" refers to a severe and chronic disability that meets the following conditions:

• It must be attributable to mental retardation, cerebral palsy, epilepsy, head injury, autism, a learning disability related to brain dysfunction; or to another mental and /or physical impairment manifested before the person attains age 22.
  
  
• The impairment must be likely to continue indefinitely. It must result in substantial functional limitations in three or more of the following areas: self-care; receptive and expressive language; learning; mobility; self-direction; capacity for independent living or economic self-sufficiency.
  
  
• The impairment must also reflect the person's need for a combination of special care, habitation, or other services which may be of life-long or extended duration, and which are individually planned and coordinated.

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There are many misconceptions about disabled people and their sexuality. Too often, developmentally disabled people are perceived as "forever children," without any sexual feelings or needs. In fact, people with developmental disabilities have many of the same needs, feelings, and desires as "able" people, and sexuality information is just as important for disabled youth.

In their position statement on "Sexuality of Persons with Disabilities," the Board of Directors of SIECUS (Sex Information & Education Council of the United States) states, "Persons with physical, cognitive, or emotional disabilities have a right to sexuality education, sexual health care, and opportunities for socializing and for sexual expression. Family, health care workers and other caregivers should receive training in understanding and supporting sexual development and behavior, comprehensive sexuality education, and related health care for individuals with disabilities." (SIECUS Report: Sexuality Education for People with Disabilities, February/March 2001)

Those of us who work with youth must guard against making inaccurate assumptions about disabled individuals and learn how to deliver appropriate information to young people with developmental disabilities.

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First, all adults who live or work with disabled children should examine their own feelings and values about sexuality and sexual norms, especially related to people with disabilities. These feelings and values can profoundly affect youth.

Young people can have a wide range of mental and physical abilities. It is therefore crucial that educators designing sexuality education programs thoroughly understand the youths' specific disabilities, including the medical aspects and the impacts on psychosocial development. (Tepper, SIECUS Report, February/March 2001)

However, there are a few general tips for educators to remember when teaching developmental disabled youth:

• Assess your group first to find out their knowledge level;
  
  
• Keep teaching brief, specific, and clear;
  
  
• Be visual with instruction (use pictures and drawings to illustrate what you say);
  
  
• Break skills down into many small steps; and
  
  
• Be prepared to repeat instruction frequently and practice skills more.

Mitchell Tepper, Ph.D., M.P.H., of The Sexual Health Network and SexualHealth.com, identifies six objectives which form the basis of the annual workshops he conducts for young people with various disabilities. These objectives are:

1. To ensure that all participants have a basic understanding of sexuality, sexual anatomy and physiology and the possible effects various disabilities may have on sexuality;
   
   
2. To affirm participants' status as sexual beings worthy of love, relationships, and self-protection;
   
   
3. To improve participants' ability to engage socially with others, negotiate privacy, and establish meaningful relationships;
   
   
4. To ensure that participants have an understanding of their sexual rights and how to minimize physical and emotional risks of sexual expression;
   
   
5. To critically examine messages received from the media and other sources about body image; and
   
   
6. To critically examine messages received from the media and other sources about gender roles.

(Tepper, Becoming Sexually Able: Education to Help Youth with Disabilities, SIECUS Report, February/March 2001)

The most important goals of any sexuality education program include promoting a positive self image (including a healthy perception of individual sexuality) as well as developing self-understanding and confidence in social abilities. (Tepper, SIECUS Report, February/March 2001) These goals are no less important for youth with disabilities.

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Organizations and web sites with additional information on educating youth with developmental disabilities include:

• The Arc (for good information on statistics)
  www.TheARC.org
  
  
• The American Association on Mental Retardation (AAMR)
  www.aamr.org
  
  
• National Down Syndrome Society (especially for clinical information on sexuality in Down Syndrome)
  www.ndss.org/aboutds/clinical/sexuality/sexuality.html
  
  
• Our Kids (for statistics on sexual abuse)
  www.our-kids.org/Books/sexed.htm
  
  
• Educational Resources Info Center, Clearinghouse on Disabilities and Gifted Education
  ericec.org/faq/mr-sexed.html
  
  
• Council for Exceptional Children
  www.cec.sped.org
  
  
• SIECUS annotated bibliography on Sexuality & Disability
  www.siecus.org/pubs/biblio/bibs0009.html
  
  
• Making the Connection: Sexuality and Reproductive Health
  A guide to help program planners, providers, and policymakers worldwide understand the connection between sexuality and reproductive health
  www.siecus.org/pubs/cnct/cnct0000.html
  
  
• Idea Practices (answers questions about the Individuals with Disabilities Education Act - IDEA - and shares ideas)
  www.ideapractices.org/
  
  
• Sexual Health Resource Network annotated bibliography
  www.cw.bc.ca/sunnyhill/SexHealth/Index.asp
  
  
• American Academy of Pediatrics Policy Statement –Sexuality Education of Children and Adolescents with Developmental Disabilities February, 1996, pp. 275-278 (RE9603) includes goals, attitudes, and recommendations for parents available at:
  www.aap.org/policy/01225.html
  
  
• Health Promotion and People with Developmental Disabilities –
  www.dcs.wisc.edu/pda/hhi/devdis.htm
  
  
• Developmental Disabilities – Resources for Healthcare Professionals – Sexuality and Reproductive Health section:
  www.ddhealthinfo.org
  Once at site, do a search for "sexuality" to find pages.
  
  
• National Information Center for Children and Youth with Disabilities – Sexuality Education for Children & Youth with Disabilities section:
  www.nichcy.org/pubs/newsdig/nd17txt.htm
  
  
• New York State Commission on Quality Care, Sexuality Page:
  www.cqc.state.ny.us/sexualit.htm
  
  
• Family Village family info about disabilities site:
  www.familyvillage.wisc.edu/index.htmlx
  
  
• Consortium on Developmental Disabilities Councils
  www.cddc.com

Suggested books, curricula, resource guides, and articles:

• SIECUS Report: Sexuality Education for People with Disabilities
  Volume 29, Number 3
  February/March 2001
  www.siecus.org

• Being Sexual: An Illustrated Series on Sexuality and Relationships (curriculum)
  Authors: Dave Hingsburger and Susan Ludwig
  1993; Sex Information & Education Council of Canada.

• Talking Sex! Practical Approaches and Strategies for Working with People Who Have Developmental Disabilities When the Topic is Sex. 1999.
  Author: Lisa Maurer
  Curriculum available (cost: $40) from:
  Planned Parenthood of Tompkins County
  Education and Training Department
  314 West State Street
  Ithaca, NY 14850
  Phone: (607) 273-1526, ext. 134; FAX: (607) 273-8232
  Web site: www.sextalk.org

• Positive Approaches: A Sexuality Guide for Teaching Developmentally Disabled Persons. 1991.
  Author: Lisa Maurer
  Resource guide currently out of print but scheduled to be reprinted by Planned Parenthood of Tompkins County,
  Education and Training Department
  314 West State Street,
  Ithaca, NY 14850
  Phone: (607) 273-1526, ext. 134; FAX: (607) 273-8232
  Web site: www.sextalk.org

• Sexuality and Adolescents with Autism
  Author: Rebecca Koller
  Journal: Sexuality and Disability, Vol. 18, No. 2, 2000.

• Sexuality and People with Intellectual Disability (Second Edition)
  Lydia Fegan, M.A., Anne Rauch, B.A., and Wendy McCarthy
  1993. Paul H. Brookes Publishing.

• Reproductive Issues for Persons with Physical Disabilities
  Florence P. Haseltine, Ph.D., M.D., Sandra S. Cole, Ph.D., and David B. Gray, Ph.D., Editors
  1993. Paul H. Brookes Publishing.

• Meeting the Needs of Special Education Students in Human Sexuality Education
  Free informational CD available from the Kansas State Department of Education
  One-day training on this topic also available
  Contact: Dr. Darrel Lang, Health and Physical Education, HIV/AIDS Human Sexuality Education Program Consultant
  Kansas Department of Education
  120 SE 10th Ave., Topeka, KS 66612-1182
  785-296-6716
  dlang@ksde.org

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