Medical Home Portal - 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. It can affect the way we see ourselves and sometimes affects the way we are seen by others. Our society often ignores issues of sexuality and relationships in regard to people with disabilities, but your medical home can provide youth and their families with useful information and support in this area. This page is meant to help families identify their concerns and questions and encourage them to ask questions during visits to their primary care doctor.

What are healthy relationships?

The term “healthy relationships” covers a wide range of topics. Younger children can be helped by learning about appropriate behaviors and personal safety. Adolescents may 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 choices.

As parents, it is of great value 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 ask about what type of teaching and information is being offered at their child's school and decide if they can reinforce or add to these lessons. Parents whose children have specific behavioral issues or impulse control challenges may need to seek 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.

Sexuality

Families and youth are encouraged to talk about sexuality with their primary care doctor. 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 doctor can help find the information you need. The medical home doctor 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
How a certain disability may affect sexuality throughout one’s lifespan

Different doctors will have varying levels of expertise in dealing with sexuality issues, and they may refer you to specialists with more knowledge and experience, depending on your family’s needs and your youth’s diagnosis. It’s important to keep in mind that human sexuality applies to people with disabilities. This includes 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 doctors can help youth with specific diagnoses to understand how that 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 Parents and Patients

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).

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
This project includes four training modules for families on topics such as "The Journey to Adulthood – What Every Parent Needs to Know". 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.

Authors & Reviewers

Initial publication: December 2005; last update/revision: April 2020

Current Authors and Reviewers:

Author:	Sarah Hokanson, RN, CRRN
Reviewer:	Tina Persels

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

Authoring history

2014: first version: Alfred N. Romeo, RN, PhD^R; Tina Persels^R; Shena McAuliffe, MFA^R; Gina Pola-Money^R

^AAuthor; ^CAContributing Author; ^SASenior Author; ^RReviewer