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Guidance for the Clinician in

Rendering Pediatric Care


Oral Health Care for Children With Developmental


abstract Kenneth W. Norwood, Jr, MD, Rebecca L. Slayton, DDS, PhD,

Children with developmental disabilities often have unmet complex
health care needs as well as signicant physical and cognitive limita-
children, developmental disabilities, oral health, dental care,
tions. Children with more severe conditions and from low-income fam- medical home
ilies are particularly at risk with high dental needs and poor access to
This document is copyrighted and is property of the American
care. In addition, children with developmental disabilities are living Academy of Pediatrics and its Board of Directors. All authors
longer, requiring continued oral health care. This clinical report have led conict of interest statements with the American
describes the effect that poor oral health has on children with devel- Academy of Pediatrics. Any conicts have been resolved through
a process approved by the Board of Directors. The American
opmental disabilities as well as the importance of partnerships be- Academy of Pediatrics has neither solicited nor accepted any
tween the pediatric medical and dental homes. Basic knowledge of commercial involvement in the development of the content of
the oral health risk factors affecting children with developmental dis- this publication.
abilities is provided. Pediatricians may use the report to guide their The guidance in this report does not indicate an exclusive
incorporation of oral health assessments and education into their well- course of treatment or serve as a standard of medical care.
Variations, taking into account individual circumstances, may be
child examinations for children with developmental disabilities. This appropriate.
report has medical, legal, educational, and operational implications
for practicing pediatricians. Pediatrics 2013;131:614619

Good oral health is an important component of overall health and

implies that teeth, gums, and oral mucosal tissues are intact and free
of disease. Conversely, poor oral health may affect quality of life and
a persons ability to eat, sleep, and function without pain. For many
children with developmental disabilities, their smile is their most
effective way of interacting with the world. Poor oral health may also www.pediatrics.org/cgi/doi/10.1542/peds.2012-3650
contribute to systemic illness (aspiration pneumonia, systemic in- doi:10.1542/peds.2012-3650
fection, and systemic inammation).1 The most common disease of All clinical reports from the American Academy of Pediatrics
teeth is dental caries (cavities), and the most common diseases of the automatically expire 5 years after publication unless reafrmed,
gingiva and supporting structures of the teeth are gingivitis and revised, or retired at or before that time.
periodontal disease, respectively. Dental caries occur when bacteria PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).
in the mouth metabolize carbohydrates to produce acid. The regular Copyright 2013 by the American Academy of Pediatrics
exposure of tooth surfaces to acid results in loss of mineral from the
tooth and subsequent cavities. Gingivitis and periodontal disease are
also caused by bacteria and by lack of routine oral hygiene proce-
dures. Bacteria-containing plaque forms on tooth surfaces and cau-
ses inammation of the adjacent gingival tissues. If plaque is
permitted to remain on the tooth for a period of time, it becomes
mineralized. This tartar or calculus provides a physical irritation to
the gingival tissues, eventually resulting in loss of the attachment of
gums to teeth and loss of supporting bone.


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Children with developmental disabilities, able to care for young children or org). Not all of these children t into
including conditions that affect behavior children and adolescents with complex the category of having a develop-
and cognition, often have limitations in medical conditions. In some cases, mental disability. Kerins et al6 esti-
their abilities to perform activities of behavioral conditions may make it dif- mated that for general dentists who
daily living. They may have special health cult to provide dental care in the currently treat children with special
care needs as well. Examples include traditional setting. In a survey of fam- health care needs in their practice,
children with autism spectrum dis- ilies of children with special health care one-third of their available visits would
orders, intellectual disability, cerebral needs, 24% reported that their children need to be for this patient population
palsy, craniofacial anomalies, and other needed dental care other than pre- to meet capacity needs.
health conditions. As a group, children ventive care in the 12 months before the Nelson et al7 divided barriers from the
with developmental disabilities are interview and 8.9% of respondents parents perspective into 2 categories:
more likely to have unmet dental needs reported that they were unable to ob- environmental and nonenvironmental.
than are typically developing children2,3 tain the needed care.1 In the group with Signicant environmental barriers in-
and are considered to be at greater unmet dental needs, the more severely cluded the inability to nd a dentist who
risk of developing dental disease. The affected children were more likely to would treat their child and to nd
reasons include frequent use of medi- have unmet dental needs than were a dental ofce where the staff members
cine high in sugar, dependence on a children whose medical condition only were not nervous about caring for
caregiver for regular oral hygiene, re- mildly affected their lives. The access a child with special needs. Included are
duced clearance of foods from the oral to care for these children was also nancial barriers resulting from Med-
cavity, impaired salivary function, pre- signicantly affected by family income. icaid reimbursement rates that are
ference for carbohydrate-rich foods, Medicaid reimbursement rates are of- below the usual and customary fees.
a liquid or pured diet, and oral aver- ten below the usual and customary Many children with special health care
sions.4 Medications to manage seizures fees. Low-income families were much needs have Medicaid insurance for
may cause gingival overgrowth. Other less likely to report being able to ob- dental care, but many dentists, includ-
medications, such as glycopyrrolate, tain care than were higher-income ing pediatric dentists, do not accept
trihexyphenidyl, and some attention- families,2 making it imperative that Medicaid insurance. Nonenvironmental
decit/hyperactivity disorder medica- health care providers advocate for low- barriers included the childs perceived
tions (amphetamine, atomoxetine), can income families with children who are fear of the dentist, the childs inability to
result in xerostomia, which increases at risk of dental problems. cooperate for dental exams, other
the risk of dental caries. In addition, health care needs that were more ur-
recent policies promoting community- gent, and the childs having an aversion
based living arrangements and in- BARRIERS TO ACCESS TO CARE
to things in his or her mouth.7
creased independence for people with Barriers to accessing dental care for
developmental disabilities may also children with developmental disabilities ORAL HEALTH CONDITIONS
contribute to the increased risk of include transportation difculties, lim- ASSOCIATED WITH
dental caries by decreasing direct ited numbers of dentists with the nec- DEVELOPMENTAL DISABILITIES
caregiver supports.4 The oral health essary expertise, and overall workforce
needs of this population have also in- capacity shortages.6 Pediatric dentists Children Who Do Not Take Food or
creased because children with dis- have the needed training to be able to Fluids Orally
abilities are much more likely to treat patients with developmental dis- Children who are unable to meet their
survive into adulthood than they were abilities. However, there are only 5000 uid and nutritional needs orally and
in previous decades.5 practicing pediatric dentists in the who depend on gastrostomy tube
United States, and this number as well feedings are at signicantly increased
as their distribution cannot adequately risk of poor oral health, particularly
ACCESS TO MEDICAL AND DENTAL address the treatment needs of these a build-up of tartar and subsequent
CARE patients. As a result, general dentists gingivitis.4,8,9 The increased calculus
Access to dental care may pose a often treat children with special health formation that is seen in children who
challenge for children with develop- care needs in their practices. It is esti- are primarily fed via a gastrostomy
mental disabilities because of lack of or mated that there are 11.2 million chil- tube may result from the lack of nor-
inadequate dental insurance or dif- dren with special health care needs in mal clearance of the oral cavity that
culty nding a dentist who is willing and the United States (www.childhealthdata. takes place when food is chewed and

PEDIATRICS Volume 131, Number 3, March 2013 615

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swallowed. Children with quadriplegic autism.11 Children with oral aversion States, with a prevalence that varies by
cerebral palsy often have increased may need to be sedated or be pro- racial/ethnic background, and are es-
periodontal disease as a result of poor vided general anesthesia so that den- timated to be present in 1 in 1000
oral hygiene, in part because of de- tists can adequately examine, clean, births.14 Children with structural anom-
pendence on caregivers.10 The risk of and restore their teeth. alies of the face and mouth (eg, cleft
dental caries is increased by enamel lip, cleft palate, Crouzon syndrome,
hypoplasia, poor nutritional status, and Children With Functional Apert syndrome, and Pierre Robin
medicines that reduce saliva or contain Limitations in Self-care sequence) frequently require multiple
sugar. Children with oral dysphagia Self-care skills in children with in- surgeries and experience distur-
often pocket food and uids, further tellectual disability and neurodevelop- bances in dental and speech de-
promoting dental decay. Pured foods mental disabilities are compromised velopment. They may have extra teeth
may adhere to the teeth longer than because of delays in motor and cog- located in or around the cleft, missing
regular foods. Gagging, choking, and nitive abilities, which leads to an in- teeth, or malformed teeth. The posi-
reux can expose teeth to acidic gas- creased reliance on others for health tion of the teeth can make it difcult
tric contents. The lack of oral experi- and oral health care activities.12 Chil- to thoroughly remove plaque and in-
ences and severe motor impairments dren with functional limitations in self- creases the risk of dental caries.15 In
can result in hyperactive bite and gag care are at increased risk of dental addition, these children often have
reexes, which can interfere with not caries and periodontal disease as oral aversions and resist home oral
only oral hygiene but also with the a result. It is not uncommon for chil- hygiene activities. Orthodontic care is
dentists access to the childs mouth. dren with intellectual disability to also commonly required to correct dental
have oral aversions and to have be- malocclusions in these patients, and
havioral problems in the traditional orthodontic appliances signicantly in-
Children With Oral Aversion
dental ofce setting. Behavioral prob- crease the risk of dental caries. Failure
Increasing numbers of children with lems create an additional barrier to of palate repair and bone grafting is
oral aversions are being seen in care, because parents are hesitant to more likely in the presence of unhealthy
pediatricians and dentists ofces. bring the child to the dentist and be- gingival tissues, making oral hygiene
Some children have developed oral cause many dentists are not comfort- particularly important in these children.
aversions as a result of being born able managing difcult behavior.
preterm and having had prolonged One example of a disorder with cra-
Children with Down syndrome have niofacial anomalies is Goldenhar syn-
intubation and other noxious experi-
dental issues similar to those in other drome. Children with Goldenhar
ences to the mouth. Children with au-
children with intellectual disabilities, syndrome have distinctive clinical
tism spectrum disorders often have
but in addition, they are more likely to features, including mandibular hypo-
oral aversions characterized by hyper-
have crowding of teeth, making it more plasia, facial asymmetry, vertebral
sensitivities to textures, smells, tastes,
difcult to perform oral hygiene, and anomalies, microtia, and central ner-
and colors, thus signicantly limiting
are more susceptible to periodontal vous system anomalies.16 In some
the foods they will eat. Resultant nu-
disease.13 Because there is a large cases, cleft lip and palate are present,
tritional deciencies can affect oral
range in the functional status of chil- and the oral manifestations can range
health. Deciencies of vitamins A and
dren with Down syndrome, general- from malocclusion to complete lack of
C can result in poor healing and in-
izations about behavior in the dental the mandibular ramus. Intellectual
creased gum bleeding. Vitamin D de-
ofce have minimal value. There is the disability is also a common nding in
ciency can result in soft teeth.
perception that children with Down children with Goldenhar syndrome,
Malnutrition can affect the immune
syndrome are at decreased risk of
system and result in increased gingi- and therefore their ability to perform
dental caries, possibly because of
vitis and other oral infections. Pref- oral hygiene and other self-care ac-
factors related to salivary function;
erences for soft foods can lead to tivities is compromised. Also, because
however, scientic evidence is lacking.
increased food adherence to teeth. children with Goldenhar syndrome
Oral aversion can interfere with oral can have limited oral opening and/or
hygiene such as brushing or ossing. Children With Craniofacial a malocclusion, oral hygiene is more
Poor oral hygiene may be the most Anomalies difcult, putting them at increased
inuential risk indicator associat- Orofacial clefts are one of the more risk of both dental caries and
ed with new caries in children with common birth defects in the United gingivitis.17


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Children With Chronic Dental those with special health care needs, a variety of settings.25 The application
Erosions Secondary to Maladaptive but presumably, their responses would of uoride varnish during an oral
Behaviors apply to children with special health screening is a great benet to children
Children with neurodevelopmental dis- care needs as well. There are similar at high risk of caries and who may
abilities may have increased maladap- ndings in family medicine residency have limited access to dental care. Thus,
tive behaviors that can affect oral programs. In a survey of residency it should be a high priority for children
health, such as bruxism (teeth clench- directors, 95% of respondents agreed with developmental disabilities.
ing or grinding) and repetitive biting on that oral health knowledge is important Unfortunately, access to pediatric
nonfood objects. However, there is little for family medicine residents, but the dentists is limited in many areas.
information in the literature on these likelihood that residents were taught General dentists may not begin seeing
issues, especially biting on nonfood about oral health screening measures children until 3 to 5 years of age and
objects. One study showed signicantly ranged from 9% to 84%. The oral health often lack the expertise to manage the
more physical signs of bruxism in measure least taught to residents was oral health needs of children with
children who had autism spectrum asking about the mothers oral health.21 developmental disabilities. Children
disorders.18 Bruxism is more common with disabilities should follow the
Identication of Children Who
during sleep and is one of the most rst visit by rst birthday recom-
Require Referral for Dental
common sleep disorders. Bruxism can mendation even if it means traveling
result in occlusal trauma, such as ab- a long distance to see a pediatric
normal wear patterns and even teeth The American Academy of Pediatrics dentist. The importance of the pedi-
fractures. It can result in gum re- recommends the establishment of a atric medical home to coordinate with
cession and tooth loss. Some risk fac- dental home by 1 year of age for chil- a pediatric dental home cannot be
tors for bruxism are common in dren at high risk of dental caries.22 overstated. Children with certain
individuals with disabilities such as Pediatricians should encourage pa- craniofacial abnormalities and other
sleep disorders and malocclusion. The rents of children with developmental at-risk conditions should have their
usual approaches to bruxism that re- disabilities to seek dental care at their initial pediatric dental visit during the
quire the ability to cooperate with and rst birthday and to help them identify rst 6 months of life. The early es-
tolerate appliances may not be suc- resources to overcome any barriers tablishment of regular pediatric den-
cessful. A systematic review of 11 such as transportation. The American tal care at the age of 6 to 12 months
studies in individuals with develop- Academy of Pediatric Dentistry recom- with 3- to 6-month follow-up visits
mental disabilities and bruxism sug- mends that all children visit a pediatric throughout childhood means that the
gested that behavior modication and dentist when the rst tooth comes in, pediatrician should rarely have to
dental treatment may be the best usually between 6 and 12 months of make a decision about when to refer
approaches to this problem.19 age (rst visit by rst birthday).23 In a child with developmental disabilities
addition to determining caries risk, an for dental treatment. The Oral Health
INTERPROFESSIONAL early rst visit offers opportunities to Risk Assessment Tool was developed
PARTNERSHIPS establish a pediatric dental home and by an expert group of pediatricians
to provide dental-related anticipatory and pediatric dentists and is available
Oral Health Education in Medical guidance. Currently, 40 states have online (http://www2.aap.org/oralhealth/
and Residency Training Medicaid programs that reimburse RiskAssessmentTool.html). This tool can
Education in oral health during medical medical providers for preventive den- be used to document the caries risk of
and residency training is very limited. In tal care, including uoride varnish a child patient and assist with deci-
a survey of pediatricians, only 36% said application.24 Fluoride varnish is a sions regarding referral to a pediatric
they had received previous training in concentrated topical uoride that is or general dentist.
oral health, with 13% reporting training applied to the teeth by using a small
during medical school.20 The majority of brush and sets on contact with saliva.
survey respondents recognized the im- The advantages of this modality are Safe Use of Procedural Sedation
portance of evaluating their patients that it is well tolerated by infants and and Analgesia/Anesthesia
for dental caries, but only 41% felt that children, has minimal risk for inges- Many children and adults with de-
their ability to identify caries was very tion, has a prolonged therapeutic ef- velopmental disabilities nd treatment
good or excellent. This survey focused fect, and can be applied by both dental in the traditional dental setting chal-
on healthy young children rather than and nondental health professionals in lenging. Even routine dental procedures

PEDIATRICS Volume 131, Number 3, March 2013 617

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involve sounds, tastes, and other stim- precautions and seriously consider Nancy A. Murphy, MD, Interim Chairperson
ulation that can be difcult to tolerate. consultation with an anesthesiologist. Richard C. Adams, MD
Robert T. Burke, MD, MPH
To make preventive and restorative care Sandra L. Friedman, MD, MPH
more comfortable for patients with SUGGESTIONS FOR PEDIATRICIANS Amy J. Houtrow, MD, MPH, PhD
developmental disabilities, treatment is Miriam A. Kalichman, MD
1. Learn how to assess dental and Dennis Z. Kuo, MD, MHS
often provided with the use of either
periodontal health in children with Susan Ellen Levy, MD
sedation or general anesthesia. Seda- Kenneth W. Norwood, Jr, MD
special health care needs.
tion may be provided in the dental ofce Renee M. Turchi, MD, MPH
or in an outpatient surgical center fol- 2. Recognize risk factors that contrib- Susan E. Wiley, MD
lowing appropriate guidelines to ensure ute to poor oral health with the use
of the Oral Health Risk Assessment LIAISONS
patient safety. General anesthesia is Carolyn Bridgemohan, MD Section on De-
primarily provided in a hospital setting Tool (http://www2.aap.org/oralhealth/
velopmental and Behavioral Pediatrics
where the necessary precautions can RiskAssessmentTool.html). Georgina Peacock, MD, MPH Centers for
be taken to minimize complications. The 3. Identify dental professionals in the Disease Control and Prevention
community who will provide a dental Bonnie Strickland, PhD Maternal and Child
pediatrician should be aware that Health Bureau
children with disabilities often have home for children with developmen- Nora Wells, MSEd Family Voices
exaggerated and unpredictable re- tal disabilities (including providers Max Wiznitzer, MD Section on Neurology
sponses to sedation and conscious for children who require sedation/
anesthesia. anesthesia). STAFF
Stephanie Mucha, MPH
Sedation guidelines were developed 4. Include anticipatory guidance on
collaboratively between the American appropriate oral hygiene and hab- SECTION ON ORAL HEALTH EXECUTIVE
Academy of Pediatrics and the Amer- its for all children, especially those COMMITTEE, 20112012
at high risk because of special Adriana Segura, DDS, MS, Chairperson
ican Academy of Pediatric Dentistry in
Suzanne Boulter, MD
2006.26,27 These guidelines describe health care needs or developmen-
Melinda Clark, MD
the types of precautions that should tal disabilities. Rani Gereige, MD
be taken for mild and moderate levels 5. Advocate for oral care for children David Krol, MD, MPH
Wendy Mouradian, MD
of sedation in the dental or pediatric with developmental disabilities.
Rocio Quinonez, DMD, MPH
ofce. Children who are considered 6. Develop collaborations with dental Francisco Ramos-Gomez, DDS
candidates for in-ofce mild or mod- partners to coordinate care for chil- Rebecca Slayton, DDS, PhD
erate sedation include those that are Martha Ann Keels, DDS, PhD, Immediate Past
dren with developmental disabilities.
categorized by the American Society
of Anesthesiologists (ASA) Physical LEAD AUTHORS LIAISONS
Status classication system as ASA I Kenneth W. Norwood, Jr, MD Robert Delarosa, DMD American Academy of
or II. For children with ASA classica- Rebecca L. Slayton, DDS, PhD Pediatric Dentistry
tion III or IV or those with special Sheila Strock, DMD, MPH American Dental
health care needs or anatomic airway DISABILITIES EXECUTIVE COMMITTEE,
abnormalities, it is recommended 20112012 STAFF
that the practitioner take additional Gregory S. Liptak, MD, MPH, Chairperson Lauren Barone, MPH

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PEDIATRICS Volume 131, Number 3, March 2013 619

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Oral Health Care for Children With Developmental Disabilities
Kenneth W. Norwood Jr, Rebecca L. Slayton, COUNCIL ON CHILDREN WITH
Pediatrics; originally published online February 25, 2013;
DOI: 10.1542/peds.2012-3650
Updated Information & including high resolution figures, can be found at:
Services http://pediatrics.aappublications.org/content/early/2013/02/20
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PEDIATRICS is the official journal of the American Academy of Pediatrics. A monthly

publication, it has been published continuously since 1948. PEDIATRICS is owned, published,
and trademarked by the American Academy of Pediatrics, 141 Northwest Point Boulevard, Elk
Grove Village, Illinois, 60007. Copyright 2013 by the American Academy of Pediatrics. All
rights reserved. Print ISSN: 0031-4005. Online ISSN: 1098-4275.

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Oral Health Care for Children With Developmental Disabilities
Kenneth W. Norwood Jr, Rebecca L. Slayton, COUNCIL ON CHILDREN WITH
Pediatrics; originally published online February 25, 2013;
DOI: 10.1542/peds.2012-3650

The online version of this article, along with updated information and services, is
located on the World Wide Web at:

PEDIATRICS is the official journal of the American Academy of Pediatrics. A monthly

publication, it has been published continuously since 1948. PEDIATRICS is owned,
published, and trademarked by the American Academy of Pediatrics, 141 Northwest Point
Boulevard, Elk Grove Village, Illinois, 60007. Copyright 2013 by the American Academy
of Pediatrics. All rights reserved. Print ISSN: 0031-4005. Online ISSN: 1098-4275.

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