Healthy Relationships

According to the World Health Organization, "Sexuality is an integral part of the personality of everyone: man, woman, and child; it is a basic need and aspect of being human that cannot be separated from other aspects of life."

Sexuality is a normal part of the human experience at any age, and it is about much more than sex. Expressed in many ways, sexuality can include the way we walk, dress, and interact with each other. It affects the way we see ourselves and also influences the way we are seen by others. Our society often ignores issues of sexuality in regard to people with disabilities, but your medical home can provide youth and their families with valuable information and support in this area.

The term “healthy relationships” encompasses a wide range of topics. Younger children will benefit from learning about appropriate behaviors and personal safety. Adolescents will need to learn about their developing bodies, and may wonder if they can have children someday. Young adults may need information about how their specific diagnosis and medications might affect fertility or contraceptive options. This page is intended to help families identify their concerns and questions and encourage them to ask questions during visits to their primary care provider.

As parents, it is important to introduce age-appropriate information and terms to children. In some schools, children are taught about sexual maturity and adolescent development, but this education is not always offered. Parents can inquire about what type of instruction and information is being taught at their child's school and decide if they can reinforce or add information to these lessons. Parents whose children have specific behavioral issues or impulse control challenges may need to provide social skills training and other healthy relationship training at earlier ages to help their children understand how to act appropriately and safely in social situations.

Families and youth are encouraged to have discussions about sexuality with their primary care clinician. A well-child check-up or visit is a safe time to get accurate and reliable information. If your youth’s specific medical condition can affect cognitive development, social skills, secondary sex characteristics development, and organ functioning, your clinician can help find the information you need. The medical home clinician will usually provide information about:

Good hygiene and regular health maintenance;
Independent or assisted management of bowel and bladder;
Menstruation, fertility, and birth control;
Sex activities and protection from sexual diseases;
Sex abuse and/or exploitation; and
How a particular disability may affect sexuality throughout one’s lifespan.

Different clinicians will have varying levels of expertise in dealing with sexuality issues, and they may refer you to specialists with more expertise, depending on your family’s needs and your youth’s diagnosis. It’s important to keep in mind that the usual variations in human sexuality apply to individuals with disabilities, including variations in sexual orientation, curiosity, comfort with different topics, and gender roles.

Specific Diagnoses

Understanding your unique body is part of understanding sexuality, and some diagnoses may affect how your body works or how you perceive your own sexuality. Medical home clinicians can help youth with specific diagnoses to understand how their diagnosis may affect how they view their sexuality, and how their body functions. To read more about specific disabilities and sexuality, see the links below.

Developmental Disabilities

Physical Disabilities

Physical, Emotional and Intellectual Disabilities

Resources

Information & Support

For Professionals

Sexuality and People with Disabilities ( PDF Document 257 KB)
This Medical Home newsletter provides information for primary care providers and families including Sexuality and People with Disabilities; American Academy of Pediatrics recommendations for education about sexuality; tips for parents; and resources, books, and websites for parents and providers.

Gynecological Providers for CSHCN ( PDF Document 114 KB)
Gynecological providers in Utah who self-identified a willingness to treat children and youth with special health care needs in a 2005 survey to all Utah gynecologists.

For Parents and Patients

Annotated Bibliography: Sexuality and Disability
This bibliography was compiled by Amy Levine, M.A., SIECUS Librarian and Darlene Torres, Library Assistant. Sexuality Information and Education Council of the United States (SIECUS)

Healthy Relationships, Sexuality and Disability Resource Guide ( PDF Document 1.2 MB)
Online 43 page rich resource guide for young people living with disabilities, and their families and health care providers. Topics include puberty, sex ed, social skills and relationships, sexual orientation, sexual health, human rights, and abuse prevention. 2014 Edition prepared by a partnership between the Massachusetts Department of Public Health (MDPH) and the Massachusetts Department of Developmental Services (MDDS).

Making Choices: Are You Ready? ( PDF Document 43 KB)
This handout provides brief information about healthy relationships and sex; from the Kentucky Commission for Children with Special Health Care Needs.

Puberty in Children with Special Health Care Needs (Utah Family Voices) ( PDF Document 59 KB)
Information and resources about puberty, sexuality, parental challenges, and the role of the clinician.

Menstrual Management Fact Sheet ( PDF Document 49 KB)
Information, tips, and resources from the Utah Family Voices Health Information & Support Center.

Plan Your Health, Live Your Life ( PDF Document 8.1 MB)
Transitions are for everyone. This 6-page planning document has information for teens as they become adults including career goals, health, pregnancy planning, immunizations, STIs, personal safety, emotional health, finances, and more; developed by the Utah Department of Health and collaborative partners.

PACER's National Family Advocacy and Support Training Project (FAST)
This page has a piece on "The Journey to Adulthood – What Every Parent Needs to Know" in regards to youth and maturity. Also includes information on Transition to Adulthood and more for young adults and families, in English and Spanish.

Self-Exams for Females ( PDF Document 33 KB)
This handout provides brief information about how to do a breast self-exam; from the Kentucky Commission for Children with Special Health Care Needs.

Self-Exams for Males ( PDF Document 42 KB)
This handout provides brief information about how to do a testicular self-exam; from the Kentucky Commission for Children with Special Health Care Needs.

Clean Teeth ( PDF Document 33 KB)
This handout provides brief information about brushing and flossing teeth; from the Kentucky Commission for Children with Special Health Care Needs.

Exercise ( PDF Document 34 KB)
This handout provides brief information about exercising; from the Kentucky Commission for Children with Special Health Care Needs.

Youth Leadership Toolkit
Good video site for youth and young adults to learn about employment and related topics in an easy access online format. Developed by Independent Living Research Utilization (ILRU) in collaboration with the Center for Persons with Disabilities and the Becoming Leaders for Tomorrow Project.

Helpful Articles

Murphy NA, Elias ER.
Sexuality of children and adolescents with developmental disabilities.
Pediatrics. 2006;118(1):398-403. PubMed abstract / Full Text
This American Academy of Pediatrics' Clinical Report provides additional information and guidance for providers relating to puberty, psychosocial considerations, sexual abuse, sexuality education, and the pediatrician's role.

Authors & Reviewers

Initial publication: July 2008; last update/revision: March 2014

Current Authors and Reviewers:

Author:	Sarah Hokanson, RN, CRRN
Reviewers:	Alfred N. Romeo, RN, PhD
	Tina Persels
	Shena McAuliffe, MFA
	Gina Pola-Money

Funding: Thank you to the Utah Medical Home Young Adult Advisory Committee for reviewing this section.