Having a child with special health care needs impacts family life. Many families with a child with special health care needs face daily struggles. One of these struggles is helping the child maintain good oral health, which families may be uncertain how to do. Family-centered services can help families obtain the best possible oral health care for their child at home and can also help oral health professionals offer the best possible care in the dental office or other care settings. Including others who participate in the child’s care, such as parents or extended family members, can help ensure that the child receives the best possible care, as well. These individuals should be involved in giving and receiving information about the child’s oral health care.

Ensuring That Care Is Family-Centered

Recognize parents as the managers of their child’s oral health care. Parents bring expertise to their role as care managers, since they are with their child every day and interact with all health professionals who care for their child.

Involve parents in the child’s oral health care by asking for and considering their opinions and responding to their concerns. Letting parents know that their input is important builds mutual respect. Asking them to fill out the form Getting to Know Me before their child’s dental appointment can provide oral health professionals with valuable information about the child’s condition, medications, likes and dislikes, and previous dental experiences.

Learning about the child’s interests; favorite colors and flavors (for toothbrushes and other oral health materials used and distributed for home use), music, characters, and movies or TV shows can help with appointment pre-planning. Learning about a child’s sensitivities (e.g., to flavors, scents, conversation topics, sounds, and colors) can also make the appointment go more smoothly, because this information can help oral health professionals avoid antagonizing or frightening the child. Inquiring from parents about what has worked well for the child at previous appointments can also be helpful.

Consider flexibility in scheduling, and facilitate any necessary referrals. Work to accommodate each family’s needs. Try to schedule appointments at a time of the day when the child is well rested or most likely to be compliant. Appointments scheduled at times when the child does not have to miss meals or medication/therapy regimens are most likely to go well. Often, CSHCN are most comfortable having appointments with the same oral health professional each time to establish familiarity and trust. After the initial appointment, shorter and more frequent appointments may be most appropriate. Ask parents about transportation and other needs when scheduling visits. Take into consideration that a child may have many appointments every week with different health professionals, creating scheduling difficulties for parents.

Schedule enough time to accommodate the child’s and parents’ needs and to answer questions, which will increase satisfaction and improve follow-through on recommendations. Review office policies and family responsibilities with parents to clarify concerns and to determine whether accommodations are needed. Consider suggesting to parents that the child accompany siblings to their dental appointments to become familiar with the dental office setting. If referrals to specialists are necessary, personally make the referral, and explain to parents what to expect at the consultation.

Share information about resources that provide support services. Learn about resources (e.g., Family Voices, Parent to Parent USA) in the community that can provide support services to assist in making oral health care appointments a success. Examples of support services include case-management services, translators, transportation through school districts, family resource centers, regional specialty centers, local health departments, associations for children with specific health disorders, and other support groups.

Be culturally responsive. Families have diverse traditions, and many have a primary language other than English. If the oral health care setting does not have bilingual staff who can interpret, some phone companies provide interpretation services to assist in scheduling appointments or responding to questions, or the family may have a case manager who can help find a translator. The National Council on Interpreting in Health Care may serve as a resource for finding interpretive services.

Provide services and written information in plain language and in a language the family can understand. Using a language the family understands is the responsibility of any dental office that accepts federal funds such as Medicaid as payment for services rendered. The National Standards for Culturally and Linguistically Appropriate Services (CLAS) in Health Care apply to all recipients of federal funds. CLAS standards indicate that language assistance must be provided in a timely manner and at no cost to patients or consumers, for both verbal and written communication, and by competent interpreters. Health care organizations, including dental offices, must ensure the competence of interpreters and bilingual staff who provide language assistance to patients or consumers with limited English proficiency. Family and friends should not be used to provide interpretation services, except upon request by the patient or consumer. Untrained interpreters may not understand technical terms and may omit information or interpret inaccurately, which can negatively affect a child’s oral health. 2

Places to obtain materials in non-English languages include community agencies (e.g., city or county health departments) that serve ethnic groups or diverse populations. Often, such places have or know of translators who can help. Professional associations such as the American Dental Association and the National Maternal and Child Oral Health Resource Center provide information in different languages on their websites. The Centers for Disease Control and Prevention’s Plain Language Materials & Resources page offers many useful resources for developing plain language materials.

Include families in decisions about their child’s care. By being a member of the decision-making team and learning about their choices, parents will be more likely to follow through with recommendations and treatment plans. Oral health professionals can encourage parents to become active partners in their child’s oral health by clearly explaining options for care and involving them in making decisions. Encourage parents to ask questions and take notes or to record the discussion. Provide them with informational materials; a brief, easy-to-understand written summary of your recommendations; and a card for recording appointment dates, services provided, and follow-up or recall appointments. (See Module 5, Section 5.2, Informed Consent.)

Transition CSHCN from pediatric to adult oral health care. Health care transition for adolescents with special health care needs seeks to meet their individual needs. Typically, transition planning should begin between ages 14 and 16. It is important to educate the adolescent and parents on the value of transitioning to a dentist who is knowledgeable about adult oral health. At a time agreed upon by parents, the adolescent, and the pediatric dentist, the adolescent should be transitioned to a dentist knowledgeable and comfortable with managing the adolescent’s particular oral health needs. In cases where this is not possible or desired, the dental home can remain with the pediatric dentist, and referrals for specialized oral health care should be recommended when needed. 3

Tips for Communication with Children with Special Health Care Needs

Determine the level of each child’s cognitive capabilities and communication skills. Some CSHCN have limited or no verbal communication skills. Talk with parents about how the child’s abilities might affect oral health care. Ask for their thoughts and ideas on how to make the experience a success and about what has worked well with other health professionals and at other health care appointments.

• Allow enough time to introduce concepts at a level that the child can understand.
• Speak directly to the child in a friendly, respectful, and calm tone.
• Talk to and make eye contact with the child while communicating with the child and parents.
• Repeat instructions when necessary, and involve the child in hands-on demonstrations.
• Use social stories (visual or written guides) and picture books to share information with the child.
• Use technology, such as apps and programs on electronic devices, to determine if a child who is nonverbal understands what is being said (receptive language skills) and to allow the child to express their feelings or what they want to communicate (expressive language skills).

Oral health care provided in an office can be pleasant and rewarding for children if enough time is taken to establish trust and to orient the child and parents to the office environment, equipment, and procedures.