BEST PRACTICES: MANAGEMENT OF SHCN PATIENTS

Management of Dental Patients with Special

Health Care Needs
Latest Revision How to Cite: American Academy of Pediatric Dentistry. Management
2021 of dental patients with special health care needs. The Reference
Manual of Pediatric Dentistry. Chicago, Ill.: American Academy of
Pediatric Dentistry; 2021:287-94.

Abstract
This best practice presents recommendations regarding the management of oral health care for dental patients with special health care needs
(SHCN) rather than treatment for oral conditions. SHCN are defined as any physical, developmental, mental, sensory, behavioral, cognitive,
or emotional impairment or limiting condition that requires medical management, health care intervention, and/or use of specialized services
or programs. Nearly one in five U.S. children has a SHCN. The more severe their health conditions, the more likely they are to have unmet
dental needs. Barriers to care are discussed. Without professional preventive and therapeutic dental services, children with SHCN may
exacerbate systemic medical conditions and increase the need for costly care. Each oral health topic (e.g., dental home, scheduling appoint-
ments, patient assessment, planning dental treatment, informed consent, behavior guidance, preventive strategies) includes specific
recommendations. The document addresses patients with developmental or acquired orofacial conditions as a special cohort of children
with SHCN. Consultation and coordination of care with medical and other dental providers may be necessary for safe delivery of care and
to improve long term outcomes for these patients. As children with SHCN approach adulthood, planning and coordinating their successful
transition to an adult dental home ensures no disruption in the continuity of oral health care.
This document was developed through a collaborative effort of the American Academy of Pediatric Dentistry Councils on Clinical Affairs
and Scientific Affairs to offer updated information and guidance on the management of dental patients with special health care needs.

KEYWORDS: DENTAL CARE FOR DISABLED, DISABLED CHILD, DENTAL CARE FOR CHILDREN, PEDIATRIC DENTISTRY

Purpose or were inconclusive, recommendations were based on expert

Providing both primary and comprehensive preventive and and/or consensus opinion by experienced researchers and
therapeutic oral health care to individuals with special health clinicians.
care needs (SHCN) is an integral part of the specialty of pedi-
atric dentistry.1 The American Academy of Pediatric Dentistry Background
(AAPD) values the unique qualities of each person and the The AAPD defines special health care needs as “any physical,
need to ensure maximal health attainment for all, regard- developmental, mental, sensory, behavioral, cognitive, or emo-
less of developmental disability or other special health care tional impairment or limiting condition that requires medical
needs. These recommendations are intended to educate health management, health care intervention, and/or use of specialized
care providers, parents2, and ancillary organizations about the services or programs. The condition may be congenital,
management of oral health care needs particular to individuals developmental, or acquired through disease, trauma, or envi-
with SHCN rather than provide specific treatment recom- ronmental cause and may impose limitations in performing
mendations for oral conditions. daily self-maintenance activities or substantial limitations in
a major life activity. Health care for individuals with special
Methods needs requires specialized knowledge, as well as increased
Recommendations on the management of dental patients with awareness and attention, adaptation, and accommodative
SHCN were developed by the Council on Clinical Affairs, measures beyond what are considered routine.”5
adopted in 20043, and last revised in 20164. This update is Children with SCHN may include those with behavioral
based on a review of the current dental and medical literature (e.g., anxiety, attention deficit hyperactivity disorder, autism
related to individuals with SHCN. A search was conducted via spectrum disorder), congenital (e.g., trisomy 21, congenital
®
PubMed /MEDLINE using the terms: special needs, disabil-
ity, disabled patients/persons/children, handicapped patients,
dentistry, dental care, and oral health; fields: all; limits: within ABBREVIATIONS
AAPD: American Academy of Pediatric Dentistry. AwDA: Ameri-
the last 10 years, human, and English. Papers for review were cans with Disabilities Act. HIPAA: Health Insurance Portability
chosen from the resultant list of articles and from references and Accountability Act. SHCN: Special health care needs.
within selected articles. When data did not appear sufficient

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BEST PRACTICES: MANAGEMENT OF SHCN PATIENTS

heart disease), developmental (e.g., cerebral palsy) or cognitive to care for children with SHCN may range from limitations
(e.g., intellectual disability) disorders, and systemic diseases in access to a dentist willing to provide care, access to a pro-
(e.g., childhood cancer, sickle cell disesase).6 In some instances, fessional with experience and expertise, child’s cooperation,
the condition primarily affects the orofacial complex (e.g., and transportation issues. Because of these unmet dental care
amelogenesis imperfecta, dentinogenesis imperfecta, cleft lip/ needs, a dental home with comprehensive, coordinated services
palate, oral cancer). While these individuals may not expe- should be established.18,19
rience the same limitations as other patients with SHCN, Optimal health of children is more likely to be achieved
their needs are unique, affect their overall quality of life, and with access to comprehensive health care benefits.20 Common
require specialized, multidisciplinary oral health care. These barriers for medically necessary oral health care include finan-
individuals may be at an increased risk for oral diseases cial constraints.21-25 Insurance plays an important role for
throughout their lifetime.6-11 Oral health conditions associated families with children who have SHCN, but it still provides
with SHCN11 include: incomplete protection.23-25 Many individuals with SHCN rely
• build-up of calculus resulting in increased gingivitis on government funding to pay for medical and dental care
and risk for periodontal disease. and lack adequate access to private insurance for health care
• enamel hypoplasia. services.26 Lack of preventive and timely therapeutic care may
• dental caries. increase the need for costly care and exacerbate systemic health
• oral aversion and behavior problems. issues.27
• dental crowding. Nonfinancial barriers such as language and psychosocial,
• malocclusion. structural, and cultural considerations may interfere with
• anomalies in tooth development, size, shape, eruption, access to oral health care.25 Effective communication is essential
and arch formation. and, for hearing impaired patients/parents, can be accom-
• bruxism and wear facets. plished through a variety of methods including interpreters,
• fracture of teeth or trauma. written materials, and lip-reading. Psychosocial factors associ-
ated with access for patients with SHCN include oral health
Oral diseases can have a direct and devastating impact on beliefs, norms of caregiver responsibility, and past dental
the general health and quality of life. Individuals with certain experience of the caregiver. Structural barriers include trans-
systemic health problems or conditions such as compromised portation, school absence policies, discriminatory treatment,
immunity (e.g., malignancies, human immunodeficiency and difficulty locating providers who accept Medicaid.21
virus, history of organ transplantation) or cardiac conditions Priorities and attitudes can serve as impediments to oral
at a high risk for infective endocarditis may be especially care. The caregiver’s oral health promotion efforts and interest
vulnerable to the effects of oral diseases.12 Patients with in oral health-related education have been positively correlated
cognitive, developmental, or physical disabilities that impact with the level of function, capabilities, and independence of
their ability to understand, assume responsibility for, or co- an individual with SHCN.28 Parental and physician lack of
operate with preventive oral health practices are susceptible awareness and knowledge in the management of children with
as well.13 Oral health is an inseparable part of general health SHCN may hinder an individual with SHCN from seeking
and well-being.14 preventive dental care.28,29 Other health conditions may seem
According to the National Survey of Children’s Health in more important than dental health, especially when the re-
2017-2018, approximately 13.6 million children (18.5 percent) lationship between oral health and general health is not well
had a special health care need.15 One in four children with understood.30
SHCN (26.6 percent) had functional limitations, one in five Persons with SHCN may express a greater level of anxiety
(19.9 percent) were consistently or significantly impacted by about dental care than those without a disability, which may
their health condition(s), and nearly half (46.0 percent) were adversely impact the frequency of dental visits and, subse-
sometimes/moderately impacted by their health condition(s).15 quently, oral health.31 An assessment of anxiety or dental fear
The Surgeon General’s Call to Action to Improve the Health is challenging in this population and, in some cases, an
and Wellness of Persons With Disabilities included a call to estimation through parent or caregiver report is helpful.
double efforts in preventing disease and promoting the overall Patients with SHCN require additional considerations for be-
health and well-being of persons with disabilities.14 Because of havior guidance including the patient’s development, education
improvements in medical care, patients with SHCN are liv- level, cognitive ability, cooperation in medical settings, triggers
ing longer and require extended medical and oral health care.11 for uncooperative behavior, soothing strategies, adherence to
Many of the formerly acute and fatal diagnoses have become schedule or routine, current therapies, and other beneficial
chronic and manageable conditions.11 Oral health care is as accommodations32 as these can complicate the delivery of care.
important as the provision of medical services. The use of basic and advanced behavior guidance techniques33,34
Unmet dental needs are associated with SHCN status and allows the dentist to recognize the complexities of managing
complexity.16 Children affected with more severe conditions patients with SHCN.
have increased risk of having unmet dental needs.11,16,17 Barriers

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Managing patients with SHCN includes proper coordination staff in order to accommodate the patient in an effective and
and transition into adult care. Pediatric dentists are concerned efficient manner. The need for increased dentist and team time
about decreased access to oral health care for patients with as well as customized services should be documented so the
SHCN as they transition beyond the age of majority.35 Finding office staff is prepared to accommodate the patient’s unique
a dental home for nonpediatric patients with SHCN can be circumstances at each subsequent visit. 39 Consideration for
challenging. Pediatric hospitals, by imposing age restrictions, length of time, time of the appointment (e.g., morning, first
can create another barrier to care for these patients. This presents appointment of the day, limited patients in the waiting room)
difficulties for pediatric dentists providing care to adult patients or need for introductory visits helps to ensure a positive
with SHCN patients who have not yet transitioned to adult experience.6
primary care. Outpatient surgery centers and in-office general When scheduling patients with SHCN, familiarity and
anesthesia may be alternatives, although they may not be appro- compliance with Health Insurance Portability and Account-
priate for patients with medically complex special needs.36 The ability Act (HIPAA) and AwDA regulations applicable to
Commission on Dental Accreditation requires dental schools dental practices are imperative.18,50 HIPAA insures that the
to ensure that curricular efforts focus on educating students patient’s privacy is protected, and AwDA prevents
on assessment of treatment needs of patients with SHCN.37 discrimination on the basis of a disability.

Recommendations Patient assessment

Reducing the risk of developing oral disease is an integral Familiarity with the patient’s medical history is essential. An
part of the comprehensive oral health care for children with accurate, comprehensive, and up-to-date medical history is
SHCN. The goals of care include: (1) establishing dental necessary for correct diagnosis, effective treatment planning,
home at an early age, (2) obtaining thorough medical, dental, and decreasing the risk of aggravating a medical condition
and social patient histories, (3) creating an environment con- while rendering care. The intake interview should address the
ducive for the child to receive care, (4) providing compre- chief complaint, history of present illness, medical conditions
hensive oral health education and anticipatory guidance to and/or illnesses, medical care providers, hospitalizations/surgeries,
the child and caregiver, and (5) providing preventive and anesthetic experiences, current medications, allergies/sensitivi-
therapeutic services including behavior guidance and a multi- ties, immunization status, review of systems, and family, social
disciplinary approach when needed.6 Attention to detail is and dental histories.41,42 The interview should include patient’s
important for all aspects of care including scheduling appoint- development, education level, and cognitive ability to help
ments, assessment, treatment planning, consent, education predict cooperation.32 Many children with SHCN may have
and anticipatory guidance, treatment, recalls, and transition of sensory considerations or limitations to communication that
care when the patient reaches adulthood. can make the dental experience challenging; the dentist should
include such concerns during the history intake and be pre-
Dental home pared to modify the traditional delivery of oral care to address
A dental home should be established by 12 months of age,38 the child’s unique needs. If the patient/parent is unable to
especially for children with SHCN. The dental home provides provide accurate information, consultation with the caregiver
an opportunity to implement individualized preventive oral or with the patient’s physician may be required.
health practices, help establish routine dental care, and reduces At each patient visit, the dental team should consult and
the child’s risk of preventable dental/oral disease.38 Dentists verbally update the patient’s medical history, noting any recent
are obligated to be familiar with the regulations of the Amer- medical attention for illness or injury, change in health status,
icans with Disabilities Act18 (AwDA) and ensure compliance. newly diagnosed medical conditions, allergies/sensitivities, and
Regulations require practitioners to provide physical access changes in medications. Obtaining a written update at each
to the dental office (e.g., wheelchair ramps, disabled-parking recall visit enhances documentation and awareness of the
spaces). patient’s history and health status. The patient’s record should
identify any significant medical conditions.
Scheduling appointments A comprehensive clinical examination includes evaluation
The caregiver’s and patient’s initial contact with the dental of the head, neck, and oral structures, along with caries- and
practice allows both parties an opportunity to address the periodontal-risk assessment.43,44 Caries-risk assessment pro-
child’s primary oral health needs and to confirm the appropri- vides a means of classifying caries risk at a point in time and,
ateness of scheduling an appointment with that particular therefore, should be applied periodically to assess changes in
practitioner. Along with the child’s name, age, and chief an individual’s risk status.43 The examination also should in-
complaint, the receptionist should determine the presence clude assessments of occlusion, habits, and traumatic injuries.
and nature of any SHCN and, when appropriate, the name(s) The dentist should review all available adjunctive diagnostic
of the child’s medical care provider(s). The office staff, under aids such as radiographs, photographs, or blood tests.
the guidance of the dentist, should determine the need for an A summary of the oral findings and specific treatment
increased length of appointment and/or additional auxiliary recommendations should be provided to the patient and parent.

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When appropriate, the patient’s other health care providers difficulties with chewing, swallowing, speech, and/or oral
(e.g., physicians, nurse practitioners, therapists) and caretakers functioning. The primary motivation for parents to have
should be informed of any significant findings. An individ- their child with SHCN undergo orthodontic therapy is to
ualized preventive program, including a dental recall schedule, improve the child’s facial attractiveness, oral function, and
should be recommended after evaluation of the patient’s caries quality of life.48,49 The decision to initiate orthodontic treat-
risk, oral health needs, and capabilities. ment should factor in the child’s ability to tolerate treatment
and the expected outcomes of care.
Medical consultations
The dentist should coordinate care via consultation with the Informed consent
patient’s other care providers. When appropriate, the physician All patients must be able to provide signed informed consent
should be consulted regarding medications, sedation, general for dental treatment or have someone present who legally can
anesthesia, and special restrictions or preparations that may provide this service for them. Informed consent/assent must
be required to ensure the safe delivery of oral health care. A comply with state laws and, when applicable, institutional
multidisciplinary approach may be necessary in complex case requirements. Informed consent should be well documented
management. The dentist and staff always should be prepared in the dental record through a signed and witnessed form.50
to manage a medical emergency.
Behavior guidance
Planning dental treatment Behavior guidance of the patient with SHCN can be challeng-
The goals of oral health care for individuals with SHCN align ing. Communication may be limited due to anxiety, intellectual
with those for all children with careful consideration of the disability, or impaired hearing or vision. Because of dental
risks, benefits, and prognosis of the proposed plan to the indi- anxiety, a lack of understanding of dental care, oral aversion, or
vidual’s condition. Understanding the patient’s cognitive level, fatigue from multiple medical visits and procedures, children
sensitivities, oral aversion, and triggers to negative behavior with SHCN may exhibit resistant behaviors. These behaviors
will help improve delivery of care and communication. Den- can interfere with the safe delivery of dental treatment. With
tists should communicate with patients with SHCN at a level the parent’s/caregiver’s assistance, most patients with physical
appropriate for their cognitive development.32 The dentist and intellectual disabilities can receive oral health care in the
should not assume that patients with impaired communica- dental office. Protective stabilization can be helpful for some
tion have associated intellectual disability, unless specified.32 patients (e.g., those with aggressive, uncontrolled, or impulsive
Patients with hearing or visual impairment may require non- behaviors; when traditional behavior guidance techniques are
verbal communication and cues with the help of the caregiver. not adequate)33,34 for safe delivery of care and with consent.
Other considerations include treating active disease prior to When non-pharmacologic behavior guidance techniques are
any major medically-necessary procedures (e.g., cardiac surgery, ineffective, the practitioner may recommend sedation or gen-
initiation of oncology treatment), deferring all elective dental eral anesthesia to allow completion of comprehensive treatment
treatment during active phases of medical care if a child is in a safe and efficient manner.
immunocompromised or at hematologic risk6, and prescribing
antibiotic prophylaxis if risk for infective endocarditis or Preventive strategies
distant site infection (e.g., in the presence of uncontrolled Individuals with SHCN may be at increased risk for oral
systemic disease, if the individual is immunocompromised) is diseases; these diseases further jeopardize the patient’s overall
high.45 The practitioner should have a thorough knowledge of health.7 Education of parents/caregivers is critical for ensuring
indications and contraindications for the use of pharmacol- appropriate and regular supervision of daily oral hygiene. The
ogic agents (e.g., antibiotics, analgesics, sedatives, anesthetics) team of dental professionals should develop an individualized
in relation to the patient’s medical condition. In some situa- oral hygiene program that accommodates the unique disabil-
tions (e,g., anatomic airway issues; high risk of complications ity of the patient. Assistance from other health professions
with procedures, surgeries, or general anesthesia; the need for (e.g., occupational therapy) may be beneficial. Brushing with
high level specialist care), treatment in a tertiary hospital setting a fluoridated dentifrice twice daily helps prevent caries and
is indicated. There is anecdotal parental concern for increased gingivitis. If a patient’s sensory issues cause the taste or texture
risk of development of neurodevelopmental disorders such as of fluoridated toothpaste to be intolerable, a toothpaste with-
autism with general anesthesia exposure. Research has shown out sodium laurel sulfate (SLS) to eliminate foaming nature, a
that exposure to general anesthesia before the age of two years fluoridated mouthrinse, or an alternative (e.g., casein
and the number of exposures were not associated with the phosphopeptide-amorphous calcium phosphate [CPP-ACP])
development of autism,46 however, further research regard- may be applied with the toothbrush.51 Toothbrushes can be
ing the risks associated with neurodevelopmental disorders is modified to enable individuals with physical disabilities to
warranted.47 brush their own teeth. Electric toothbrushes and floss holders
Indications for an orthodontic evaluation include facial may improve patient compliance. Caregivers should provide the
asymmetry, abnormalities in nasal breathing, malocclusion, and optimal oral care when the patient is unable to do so adequately.

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Practitioners should encourage a non-cariogenic diet for with clinical manifestations of oligodontia and anomalies in
long term prevention of dental disease.52 When a diet rich in size or shape, can cause lifetime problems and be devastating
carbohydrates or the use of high calorie supplements is medi- to children and adults.8 From the first contact with the child
cally necessary (e.g., to increase weight gain), the dentist and family, every effort must be made to assist the family in
should provide strategies to mitigate the caries risk by altering adjusting to and understanding the complexity of the anomaly
frequency of and/or increasing preventive measures. Medica- and the related oral needs and provide an overview of goals
tions and their oral side effects (e.g., xerostomia, gingival and progression of treatment.61 The dental practitioner must
overgrowth) should be reviewed as these can have an impact be sensitive to the psychosocial well-being of the patient, as
on caries and periodontal risk.6 well as the effects of the condition on growth, function, and
Patients with SHCN may benefit from sealants. Sealants appearance. Congenital oral conditions may entail therapeutic
reduce the risk of caries in susceptible pits and fissures of intervention of a protracted nature, timed to coincide with
primary and permanent teeth.53 Topical fluorides (e.g., sodium developmental milestones. Patients with conditions such as
fluoride, silver diamine fluoride)may be indicated when caries ectodermal dysplasia, epidermolysis bullosa, cleft lip/palate,
risk is increased. 54 Interim therapeutic restoration (ITR), 55 and oral cancer may require a multidisciplinary team approach
using materials such as glass ionomers that release fluoride, may to their care. Coordinating delivery of services by the various
be useful as both preventive and therapeutic approaches in health care providers can be crucial to successful treatment
patients with SHCN.56 In cases of gingivitis and periodontal outcomes.
disease, chlorhexidine mouthrinse may be useful.57 Use of a Patients with oral involvement of conditions such as osteo-
toothbrush to apply the chlorhexidine is an option if caregivers genesis imperfecta, ectodermal dysplasia, and epidermolysis
are concerned about the child’s potentially swallowing the bullosa often present with unique financial barriers. Although
antiseptic. An increased recall frequency for patients having the oral manifestations are intrinsic to the genetic and con-
severe dental disease is indicated. Patients with aggressive genital disorders, medical health benefits may not provide for
periodontal disease require referral to a periodontist for eval- related professional oral health care. The distinction made by
uation and treatment if the treatment needs are beyond the third-party payors between congenital anomalies involving the
treating dentist’s scope of practice. orofacial complex and those involving other parts of the body
Preventive strategies for patients with SHCN also should is often arbitrary and without merit.62 For children with ecto-
address traumatic injuries. This would include anticipatory dermal dysplasia, hypodontia, or oligodontia, removable or
guidance about risk of trauma (e.g., with seizure disorders or fixed prostheses (including complete dentures or over-dentures)
motor skills/coordination deficits), mouthguard fabrication, and or implants may be indicated.63 Dentists should work
and what to do if dentoalveolar trauma occurs. Additionally, with the insurance industry to recognize the medical indication
children with SHCN are more likely to be victims of physical and justification for such treatment in these cases.
abuse, sexual abuse, and neglect when compared to children
without disabilities.58 Craniofacial, head, face, and neck injuries Referrals
occur in more than half of the cases of child abuse.59 Because A patient may suffer progression of his/her oral disease if
of this incidence, dentists need to be aware of signs of abuse treatment is not provided because of age, behavior, inability to
and mandated reporting procedures.58,59 cooperate, disability, or medical status. Postponement or denial
of care can result in unnecessary pain, discomfort, increased
Barriers treatment needs and costs, unfavorable treatment experiences,
Dentists should be familiar with community-based resources and diminished oral health outcomes. Dentists have an obli-
for patients with SHCN and encourage such assistance when gation to act in an ethical manner in the care of patients.64 If
appropriate. While local hospitals, public health facilities, the patient’s needs are beyond the skills of the practitioner,
rehabilitation services, or groups that advocate for those with the dentist should make necessary referrals in order to ensure
SHCN can be valuable contacts to help the dentist/patient the overall health of the patient. In some cases, the complex
address language and cultural barriers, other community-based nature of disease and/or existing conditions necessitate mul-
resources may offer support with financial or transportation tiple referrals and a team (e.g., cleft lip/palate team) approach
considerations that prevent access to care.60 to providing comprehensive care.

Patients with developmental or acquired orofacial conditions Transition into adult dentistry
The oral health care needs of patients with developmental or When patients with SHCN reach adulthood, their oral health
acquired orofacial conditions necessitate special considerations, care needs may extend beyond the scope of the pediatric
and management of their oral conditions may present other dentist’s practice. The successful transition from pediatric
unique challenges. Some children with acquired orofacial to adult dental care is integral to continuity of care and im-
conditions may have an oral aversion which can increase proved long-term outcomes of children with SHCN. 65
their anxiety and decrease cooperation in the dental setting. Education and preparation before transitioning to a dentist
Developmental defects, such as hereditary ectodermal dysplasia who is knowledgeable and comfortable in both adult oral

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health needs and managing SHCN are important. 66,67 Until 13. Charles JM. Dental care in children with developmental
the new dental home is established, the patient should main- disabilities: Attention deficit disorder, intellectual
tain a relationship with the current care provider and have disabilities, and autism. J Dent Child 2010;77(2):84-91.
access to emergency services. 68 In cases where transitioning 14. U.S. Department of Health and Human Services. The
is not possible or desired, the dental home can remain with Surgeon General’s Call to Action to Improve the Health
the pediatric dentist who should recommend appropriate and Wellness of Persons With Disabilities. Rockville,
referrals for specialized dental care as needed.60 A coordinated Md: DHHS, Office of the Surgeon General; 2005.
transition from a pediatric to an adult dental home is critical 15. U.S. Department of Health Resources and Services Ad-
for extending the level of oral health and health trajectory ministration’s (HRSA) Maternal and Child Health Bureau
established during childhood.36 (MCHB). Children with Special Health Care Needs.
National Survey of Children’s Health (NSCH) Data Brief
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