In the past, many parents and professionals denied the importance of sexuality and reproductive health education and services for persons with developmental disabilities, believing these individuals had no sexual feelings or desires and were not suited to have families of their own. Fortunately, many changes in societal thinking have taken place, and the focus now is on promoting the reproductive and sexual dignity and autonomy of persons with developmental disabilities.
The inability to obtain appropriate sexual counseling for persons with developmental disabilities is largely a reflection of the absence of well-trained counselors. This type of counseling may be outside the realm of practice for many primary care physicians; therefore, it is vital to refer persons with developmental disabilities to appropriate consultation and counseling services.
It is important for primary care physicians to incorporate sexuality education into the medical management of persons with disabilities. An extremely compelling reason for promoting sexuality education for individuals with developmental disabilities is the prevention of sexually exploitation and abuse.
Note: The amount and level of information discussed should be based on how much each individual patient can understand.
People with mental retardation or intellectual impairment are more vulnerable to sexual abuse than those without disabilities because they are more likely to not understand what is happening during abuse, to be too afraid to resist, and to feel the need for acceptance by the abuser. Studies indicate that as many as 90% of people with developmental disabilities will experience some form of sexual abuse at some point in their lives. People who are abused are often afraid to discuss their painful experiences and are taught to not question their caregivers or authoritative figures – the people most likely to abuse them.
All forms of sexual abuse are serious and may have harmful psychological, behavioral and physical effects on the victim. The most severe consequences usually stem from long-term abuse by a known, trusted adult beginning at an early age.
Routine reproductive health maintenance is necessary for all persons, including those with developmental disabilities. A lack of routine preventive care results in lost opportunities for early detection and intervention for gynecological, breast and prostate problems.
Adequate reproductive healthcare is often not given to people with disabilities because of the following:
Many persons with developmental disabilities or intellectual impairment are capable of raising and loving their own children. Allowing parents to raise their children, when at all possible, is usually better for the children and is usually cost-effective, even if they require more support services.
Informed consent should be obtained for exams, tests and procedures. Informed consent must be provided by the patient voluntarily; after the physician has made the patient understand all of the potential benefits, risks, alternatives, and consequences involved. It becomes especially important for long-term reproductive health decisions such as sterilization, abortion, and long-term contraceptive use (e.g., Norplant). Consent is achieved through a subjective process, not by a document or signature. Physicians should always provide sufficient information about what it is they are requesting consent for and assure the patient that he or she has a choice. While many persons with developmental disabilities are able to provide such consent, some may not be able to. This may make it difficult for them to receive the most appropriate care.
Parents with disabilities face the same spectrum of challenges that any parent does. They may encounter additional challenges as a result of how they were treated as child or as a result of low socioeconomic status. Challenges may include:
Parents with disabilities may require additional support and training in order to function effectively as parents. Common needs include assistance and training in the following skills:
Additional support may be obtained from the following types of resources:
American Academy of Pediatrics, Committee on Children with Disabilities. (1996). Sexuality Education of Children and Adolescents with Developmental Disabilities. Pediatrics, 97(2), 275-278.
American Academy of Pediatrics, Committee on Child Abuse and Neglect and Committee on Children with Disabilities. (2001). Sexuality Educaiton for Children with Disabilities. Pediatrics, 108, 508-512.
Carr, L.T. (1995). Sexuality and People with Learning Disabilities. British Journal of Nursing, 4(19), 1135-1141.
Keywood, K. (1998). Hobson’s Choice: Reproductive Choices for Women with Learning Disabilities. Medicine and Law, 17(2), 149-165.
Valenti-Hein, D., Dura, J. (1996). Sexuality and Sexual Development. In: Manual of Diagnosis and Professional Practice in Mental Retardation.
Baxley, D.L. (2005). Sexuality Education for Children and Adolescents with Developmental disabilities: an Instructional Manual for Parents or Caregivers of Individual with Developmental Disabilities Retrieved on June 15, 2006 from http://www.albany.edu/aging/IDD/docs.htm
Couwenhoven, T. (2001). Sexuality Education: Building a Foundation for Healthy Attitutdes, Disability Solutions, 4(5). Retrieved on June 15, 2006 from http://www.disabilitysolutions.org/pdf/4-5.pdf
Couwenhoven, T. (2001). Sexuality Education: Building a Foundation for Healthy Attitutdes, Disability Solutions, 5(6). Retrieved on June 15, 2006 from http://www.disabilitysolutions.org
Fishman, M.E. et al. (1997). Collaborative Office rounds: Coninuing Education in the Psychosocial/Developmental Aspects of Child Health. Pediatrics, 99(5).
Hinsburger, D. (1995). Sexuality Update: Loving and Disability: Not Just Theoretical. The Habilitative Mental Healthcare Newsletter, 14(2).
Murphy, N.A., Elias, E.R. (2006). Council on Children with Disabilities: Sexuality of Children and Adolescents with Developmental Disabilities. Pediatrics, 118, 398-403.
National Information Center for Children and Youth with Disabilities. (1992). Sexuality Education for Children and Youth with Disabilities.” NICHCY News Digest #ND17. Accessed November 25, 1998 at http://www.nichcy.org/pubs/newsdig/nd17.htm
Valenti-Hein, D., Schwartz, L. (1995). The Sexual Abuse Interview for Those with Developmental Disabilities. James Stanfield Company. Santa Barbara: California.
Smith Consultant Group and McGowan Consultants. (1998). Sexuality Rights. In M.L. Snyder (Ed.) Health and Wellness Reference Guide (pp. 535-538). Neri Productions, State of Tennessee Commission on Compliance.
American Society for Reproductive Medicine, 205-978-5000,
The Arc, 800-433-5255,
California Department of Developmental Services, 916-654-1690,
California Regional Centers, 915-654-1958,
http://www.dds.ca.gov/rc/RCInfo.cfm
Exceptional Parent Magazine, 800-247-8080,
Family Planning Council,
http://www.familyplanning.org
Human Sexuality and Physical Disability Program, University of Minnesota, 612-625-1500
http://www.med.umn.edu/fm/phs/home.html
March of Dimes Birth Defects Foundation, 914-428-7100,
The National Task Force on Abuse and Disabilities, 310-391-2420
Planned Parenthood Affiliates of California,
Planned Parenthood Federation of America, Inc.,
http://www.plannedparenthood.org
Theodore A. Kastner, M.D., M.S.
Felice Weber Parisi, M.D., M.P.H.
Joan M. Reese, M.D., M.P.H.
Patricia Samuelson, M.D.
Funded by a grant from the California Department of Developmental Services
For more information, contact:
Center for Health Improvement
1330 21st Street, Suite 100
Sacramento, CA 95814
(916) 901-9645
This document does not provide advice regarding medical diagnosis or treatment for any individual case, and any opinions or statements contained in this document are not intended to serve as a standard of medical care. Physicians are encouraged to view the considerations presented in this document in light of evolving scientific information. This document is not intended for use by the layperson. Reproduction of this document may be done with proper credit given to California Department of Developmental Services and the Center for Health Improvement.