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LSHSS
Clinical Forum
Schoolchildren With DysphagiaAssociated With Medically
Complex Conditions
Maureen A. Lefton-Greif Eudowood Division of Pediatric Respiratory Sciences at Johns Hopkins Medical Institutions, Baltimore, MD
Joan C. ArvedsonChildren’s Hospital of Wisconsin–Milwaukee Medical College of Wisconsin–Milwaukee
S chool-based speech-language pathologists (SLPs)
are increasingly facing the need to be knowledgeable
about swallowing and feeding problems in children.
Improved survival of preterm infants with very low birthweight,infants with major cardiorespiratory conditions, and children with
neurological insults has resulted in more children with medically
complex conditions who have swallowing and feeding problems
in the schools. These children vary in their manifestations of
swallowing deficits and more generic feeding difficulties such as
behavior-based feeding problems, “ picky” eating in the presence
of adequate skills, and delayed development of oral skills without
true swallowing deficits. Essential activities of daily living for all
children include safe swallowing and functional skills for oral
feeding.
According to the American Speech-Language-Hearing Associ-
ation (ASHA) Guidelines for the Roles and Responsibilities of
the School-Based Speech-Language Pathologist (ASHA, 2000,
p. 281), interventions for swallowing and feeding problems may be integrated with interventions that contribute to effective com-
munication. In addition, all children deserve adequate nutrition
and nonstressful mealtimes in order to have sufficient energy to
focus in ways that can maximize their learning and participation
in educational settings. These children are less likely than they were
in the past to be in self-contained special education classrooms or
special schools. The mandate to provide the least restrictive en-
vironment for all children in integrated programs has added to
the roles that SLPs are expected to perform in schools. Thus, all
school-based SLPs need to be prepared to carry out evaluations and
ABSTRACT: Purpose: This article reviews population trends
and general characteristics of children with dysphagia in schools,provides an overview of dysphagia teams and the roles of the
speech-language pathologist (SLP) in school and hospital settings,
and describes assessment and treatment of swallowing and
feeding problems in children with complex medical histories.
Method: A review of the literature of swallowing and feeding
problems in young children and population trends for children
who are at risk for dysphagia was completed. Two case studies
are presented to illustrate the complexities that are common
to this population and to provide practical information to
maximize the health and education outcomes of children with
dysphagia.
Results: SLPs in schools are increasingly evaluating and treating
children with dysphagia associated with medically complexconditions. There is a rising incidence in preterm births and the
survival of medically fragile children, suggesting that a greater
number of children will be at risk for dysphagia in the future.
Limited evidence is available to support most therapeutic
interventions.
Conclusion: School-based SLPs are uniquely positioned to identify
swallowing and feeding problems, evaluate and treat children with
dysphagia, participate on dysphagia teams in the school setting,
and interact with the medical team.
KEY WORDS: deglutition, feeding, swallowing, pediatric, team
LANGUAGE, SPEECH, AND H EARING S ERVICES IN S CHOOLS • Vol. 39 • 237–248 • April 2008 * American Speech-Language-Hearing Association
0161-1461/08/3902-0237
237
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interventions with these children who have swallowing and feeding
issues.
Children with ongoing complex medical issues face a variety
of challenges that frequently include swallowing and feeding def-
icits. This article focuses on (a) the population trends and gen-
eral characteristics of children with dysphagia in schools, (b) an
overview of dysphagia teams and the role of the SLP in school
and hospital settings, and (c) assessment and treatment methodsthat are educationally relevant for children with complex medical
histories.
POPULATION TRENDS AND GENERALCHARACTERISTICS OF CHILDRENWITH DYSPHAGIA IN SCHOOLS
Population Trends Related to Pediatric Dysphagia
The prevalence of oropharyngeal dysphagia in the general
population and school-age children is not well defined; however,
there is general agreement concerning the increasing incidence
of pediatric dysphagia. Currently, approximately 12% to 13% of
school-based SLPs regularly provide services to children with
dysphagia (ASHA, 2004). Recent medical advances and birth
trends suggest that schools will need to service growing numbers
of children with these problems in the future.
Children with histories of prematurity are at increased risk for
impairments in deglutition (the act of swallowing) and disruptions
in feeding. They are more likely than term infants to experience a
period of non-oral feedings, at least one aspiration event, and the
need for alternative feeding methods (Burklow, McGrath, Valerius,
& Rudolph, 2002). These types of feeding problems have been
observed in children with significant respiratory challenges and
neurological problems (Burklow et al., 2002).The Centers for Disease Control and Prevention (CDC) has
reported an increase in preterm (<37 weeks gestation) births over
the past 2 decades. In 2003, the preterm delivery rates were 16%
higher than in 1990 and 30% higher than in 1981 (Martin et al.,
2005). From 2002 to 2003, the rate of premature births increased
from 12.1% to 12.3% of all 4,089,950 births registered in the United
States (Martin et al., 2005). This means that more than one half
million births in this 1-year period in the United States were preterm.
This rising incidence of preterm births suggests a future increase
in the number of children in school settings with impairments
in deglutition or at risk for such problems. In addition to the issues
surrounding prematurity, some term infants may have high risk
factors for swallowing and feeding problems. These risk factorsmay include craniofacial anomalies, cardiorespiratory deficits, air-
way problems that may require surgery (e.g., tracheostomy), and
gastrointestinal deficits (e.g., tracheoesophageal fistula, eosinophilic
esophagitis, motility problems).
Despite the improved survival rate of preterm low birthweight
infants, robust predictors of neurodevelopmental outcomes for
these infants remain unavailable. Nonetheless, there is general
agreement that school outcomes are inversely related to younger
gestational ages and lower birthweights, and directly related to
abnormal findings obtained from neuroimaging studies and neuro-
developmental examinations that were conducted during the
neonatal period (Allen & Capute, 1989; McGrath & Sullivan, 2002)
Preterm births account for more than 40% of all cases of cerebral
palsy (CP) (Hagberg, Hagberg, Beckung, & Uvebrant, 2001). In
addition, comorbidities associated with prematurity may negatively
influence a child’s growth and development. In particular, respiratory
disease and neurological involvement may contribute to impair-
ments in deglutition that persist beyond infancy (Burklow, Phelps,
Schultz, McConnell, & Rudolph, 1998). Furthermore, long-term
follow-up of school-age children and young adults who weredelivered prematurely has demonstrated that these children have
depressed academic, neurodevelopmental, and growth-related
outcomes compared to similar persons who were delivered at term
(Hack, 2006; McGrath & Sullivan, 2002).
General Characteristics of Children
With Dysphagia in Schools
School-age children with dysphagia are a heterogeneous group
of individuals with a variety of underlying diagnostic conditions
and a wide range of disabilities. In practice, the descriptor “school-
age” may be the most common feature shared by these children.
Infants who were considered to be medically fragile may have
grown into students with complex past medical histories. These
children are at increased risk for impairments in deglutition; those
with an early need for respiratory support may be at greatest risk
(Burklow et al., 1998). Some children continue to demonstrate
dysphagia involving one or more phases of swallowing. Others
have “outgrown” their swallowing problems. Still others may
demonstrate a regression in swallowing and feeding skills when
they are challenged with increased nutrition or hydration requirements,
when they are presented with foods that require more developmentally
mature oral sensorimotor skills (e.g., chewing), or when they ex-
perience intercurrent illnesses (e.g., respiratory or gastrointestinal).
These children are also at increased risk for behavioral-based
feeding difficulties (Burklow et al., 1998).Although children with complex medical histories, particularly
those associated with neurological impairment and respiratory
disease, are at increased risk for swallowing dysfunction, not all
have significant problems. The dysphagia team needs to monitor
“high-risk ” children for indications of potential swallowing dys-
function when children present with signs of common mealtime
problems such as rejection or limited intake of foods or liquids,
increased congestion while eating and drinking, coughing or chok-
ing during meals, a wet or gurgly voice quality before or after
swallowing, and excessive drooling. These children may be absent
from school more often than their peers because of respiratory
infections. The dysphagia team also needs to be alert to a small
number of children who present with swallowing dysfunction that appears to be isolated or not associated with complex medical
problems (Lefton-Greif, Carroll, & Loughlin, 2006). These chil-
dren may be identified as having problems when school activities
include snack or lunch.
Children with neurological conditions. The underlying condi-
tion and its evolution are primary factors that influence the mani-
festation and possible resolution of dysphagia. In children with
neurological conditions, the specific characteristics of the swal-
lowing dysfunction will be determined by the site of pathology.
The prognosis for recovery will be influenced strongly by whether
the underlying neurological condition is acute or chronic and, if
chronic, whether it is static or progressive. SLPs should be familiar
238 LANGUAGE, SPEECH, AND HEARING SERVICES IN SCHOOLS • Vol. 39 • 237–248 • April 2008
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with major etiologies of dysphagia in childhood and the levels
of the nervous system affected (Table 1). Children with static
neurological diagnoses typically show gains in skills across a range
of domains as they make developmental progress, whereas those
with progressive neurological conditions may make developmental
gains for varied periods of time, but may eventually lose skills,
including swallowing and feeding skills. In addition, function may
be influenced by growth and developmental changes even whenchildren have static neurological etiologies. For example, some chil-
dren with CP may do well with pureed foods and develop problems
when they need to transition to solid foods that require chewing.
The most common neurological etiology in children with swal-
lowing and feeding dysfunction is CP, which is a static condition.
Although precise data are not readily available, it is estimated that
85% to 90% of children with CP have swallowing difficulties at
some times in their lives. More than half (57%) of all children
with CP are estimated to have problems sucking in the first year of
life, 38% with swallowing, and 33% with malnutrition (Reilly,
Skuse, & Poblete, 1996).
SLPs need to be aware of the four primary types of CP: spas-
tic (70%), choreoathetoid (20%), ataxic (10%), and mixed (most
often spastic and choreoathetoid combined). Children with spastic
diplegia (lower limb involvement primarily) are predicted to be total
oral feeders with essentially normal cognitive skills. They should
be verbal communicators, unless there are other complicating fac-
tors. These children rarely have seizures. Children with spastic
quadriplegia (involvement of all four extremities) have muscles that
are both stiff and weak. They are the most severely affected and
are far more likely to demonstrate oral feeding problems that in-
volve oral deficits and pharyngeal phase problems with possible
silent aspiration (Arvedson, Rogers, Buck, Smart, & Msall, 1994).
Children with choreoathetoid CP have muscles that spontaneously
move slowly and without normal control. In some of these chil-
dren, movements may be ballistic (abrupt and jerky). Childrenwith ataxic CP have poor coordination and shaky movements,
usually with muscle weakness and trembling. These children have
trouble making rapid or fine movements. They walk unsteadily
with legs widely spaced. The diagnosis of CP is often difficult
in early infancy. The specific type of CP often cannot be dis-
tinguished before a child is 18 months old. The type of CP should
be clearly delineated by the time children enter school.
Some children with spastic quadriplegia or with choreoathetosis
who have been total oral feeders as young children and through
elementary school years, often with marginal nutrition and hy-
dration status, may require supplemental nutrition that can range
from increased caloric density of some food and liquid under the
guidance of a dietitian, to a combination of oral and tube feeding, to
essentially total non-oral feeding as they reach puberty. Children
who are slow feeders (with mealtimes typically longer than 30 min)
are also likely to have difficulties in meeting their nutrition and
hydration needs, even if they are not at major risk for aspiration and
subsequent pulmonary problems. Those children at defined risks
Table 1. Determinants of manifestation and progression of dysphagia associated with neurological conditions (Adapted from Rogers, 1996 andIchord, 1994).
Site of pathology Acute
Chronic
Static Progressive
Central nervous system Hypoxic-ischemic encephalopathy Cerebral palsy Intracranial malignanciesCerebral infarctions Genetic disorders TumorsIntracranial hemorrhage Down syndrome LeukemiaInfections Skeletal dysplasias Lymphoma
Meningitis Familial dysautonomia Degenerative white and gray matter diseasesEncephalitis Riley-DayMetabolic disorders
(mucopolysaccharidoses)Botulism Congenital anomalies of the brain
Infections (HIV encephalopathy)Acute bilirubin encephalopathy
(kernicterus)Arnold-Chiari malformation
Demyelinating processes (multiplesclerosis)
Metabolic encephalopathiesMobius sequence
Rett syndrome
Traumatic encephalopathySyringomyelia
Spinocerebellar disordersTraumatic brain injury ( TBI)
Congenital varicella
Congenital ataxiasBrainstem injuries
Cerebrovascular infarctions
Ataxia-Telangiectasia
PoliomyelitisArteriovenous malformations
Joubert syndrome
TBI
Spinal muscular atrophy
Chronic posticteric encephalopathy
Brain stem tumor
Brain stem tumor
Peripheral nervous system Trauma ( basilar skull fracture) Polyneurophathies Spinal muscular atrophy
Poliomyelitis
Neuromuscular junction Botulism Myasthenia gravis
Muscles Inflammatory Congenital Metabolic myopathiesPolymyositis Myopathies Glycogen storage diseaseDermatomyositis Myotonic dystrophy Mitrochondrial
Muscular dystrophy D uchenne m uscular dystrophy
© 2006 M. A. Lefton-Greif and J. C. Arvedson. All Rights Reserved. Reprinted with permission.
Lefton-Greif & Arvedson: Dysphagia in Children With Medically Complex Conditions 239
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for pharyngeal phase swallowing problems along with the reduced
nutrition/ hydration status become candidates for feeding tubes.
Members of the dysphagia team have primary responsibilities for
monitoring health status and for assisting parents to get adequate
pertinent information to allow them to make the best decisions
possible for each child.
In contrast to children with conditions that are identified early
in life, some children develop swallowing and feeding prob-lems as they get older. Children with neuromuscular or progres-
sive underlying conditions (e.g., spinal muscular atrophy
[SMA] Type II, muscular dystrophy, leukodystrophies, ataxia-
telangiectasia, and untreatable brain tumors) may be referred to
an SLP for evaluation when swallowing function deteriorates,
part icula rly when they need increased ti me to e at lunch at schoo l
because chew ing beco mes more difficult . Other child ren may
pres ent with swal lowi ng and feed ing probl ems when they retu rn
to school following an acute event (e.g., traumatic brain injury or
cerebral vascular accident).
Children with progressive neuromuscular conditions are prone
to increased problems with oral feeding as their disease process
advances (Table 1). Although these children may stabilize and
appear to make gains fairly early in the course of their disease,
over time, their skills will deteriorate and they may not be able to
continue as total oral feeders. Some of these children, especially
those with muscular dystrophy, have intact cognitive skills and
receptive language. Speech intelligibility and swallowing function
may deteriorate given the cranial nerve or muscle involvement.
The manifestation of the dysphagia will parallel the site of the
lesion, and the prognosis will be determined by the course of the
underlying condition. These students may exhibit dysphagia in
any or all phases of swallowing (i.e., oral preparatory/bolus
formation, oral, pharyngeal, or esophageal).
Children with respiratory conditions. Children with respiratory
problems as part of their complex medical conditions and devel-
opmental delays are at increased risk for oropharyngeal dysphagia(Seddon & Khan, 2003; Toder, 2000). Neurological impairment and
underlying lung conditions are likely to co-exist, interact, and
contribute to respiratory vulnerability by (a) disrupting the child’s
temporal coordination between breathing and swallowing and
thereby increasing the risk of aspiration and (b) decreasing the
child’s ability to tolerate the respiratory and nutritional sequelae
associated with dysphagia.
Temporal coordination of breathing and swallowing is critical
for protection of the lungs because breathing and swallowing share
the pharynx as a common pathway for food and air. Aberrant
respiratory–swallowing coupling may favor aspiration, particularly
when inspiration occurs while a bolus is adjacent to an open airway
(Hadjikoutis, Pickersgill, Dawson, & Wiles, 2000; Paydarfar,Gilbert, Poppel, & Nassab, 1995; Shaker et al., 1992). Incoordi-
nation between respiration and swallowing occurs in children with
neurological conditions such as CP (Rempel & Moussavi, 2005)
and may result in hypoxemia and pneumonia (Loughlin, 1989;
Rogers, Msall, & Shucard, 1993). Chronic lung disease (CLD), the
most common adverse outcome of prematurity, is also associated
with atypical respiratory–swallowing patterns (Timms, DiFiore,
Martin, & Miller, 1993).
Pharyngeal phase dysfunction, particularly when characterized
by disruptions in respiratory–swallowing coordination, may re-
sult in an increased risk for aspiration of saliva, liquid, or solid food
into the airway. Furthermore, the failure to cough or clear the throat
in response to aspiration (i.e., “silent aspiration”) is common in
children with complex medical histories and dysphagia (Arvedson
et al., 1994; Brumbaugh & Accurso, 2002; Frazier & Friedman,
1996). The risk of pulmonary infection increases when aspiration
occurs without an effective cough or airway clearance response
after a foreign material enters the airway.
Multiple factors influence each child’s ability to tolerate the
respiratory consequences associated with oropharyngeal dysphagia(Seddon & Khan, 2003; Toder, 2000). These factors may include
but are not limited to:
& the severity of swallowing dysfunction and whether an
effective cough is produced if aspiration occurs
& nutrition status
& the competency of airway clearance mechanisms (e.g.,
mucocillary clearance)
& the degree of pulmonary reserve (due to chest wall or spinal
deformities)
& the presence of residual CLD (CLD of prematurity).
Toder provides an excellent review of common respiratory problems
in adolescents with developmental disabilities.
OVERVIEW OF DYSPHAGIA TEAMS ANDTHE ROLES OF THE SLP IN SCHOOLAND HOSPITAL SETTINGS
Collaboration between school and medical-based teams is
crucial for meeting the needs of children with complex medical
issues related to their swallowing and feeding. These children
often have medical, and in some instances, surgical issues that will
have an impact on their health, development, and overall well-
being. All of these issues may impact negatively on the child’sability to participate in educationally focused activities. Thus,
successful evaluation and treatment of children with dysphagia
requires the expertise of professionals in multiple disciplines as
well as coordination of these efforts.
Members of school-based dysphagia teams need to work with
caregivers and health care professionals to determine the best means
to address the needs of these children in order to maximize their
participation in the education process. School-based teams do not
have the benefit of “onsite” access to immediate medical care for
these children, or to determine whether to treat or not treat a child
who does not appear safe to feed or how to advance a swallow-
ing and feeding program in children with previously documented
oropharyngeal dysphagia and silent aspiration. In turn, hospital- based teams rely on their colleagues in the schools for monitoring
each child’s progress and reporting any changes in status that need
to be addressed.
Team processes, structures (e.g., interdisciplinary or multidis-
ciplinary), and respective members may vary in different settings
and according to the needs of specific children (Homer, 2003;
Lefton-Greif & Arvedson, 1997). All SLPs participating on school
or medical teams must have extensive knowledge of and experience
with the various etiologies underlying dysphagia. They also must
demonstrate skills to interpret signs and symptoms of oropharyn-
geal dysphagia in the context of associated pulmonary and nutrition
sequelae. SLP roles may include, but are not limited to, assessing
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and treating oral sensorimotor, feeding, and communication prob-
lems during meals; identifying needs for medical referrals that
may result in additional diagnostic workups; initiating referrals
for instrumental swallowing evaluations that may involve other
specialists; and consulting and collaborating with caregivers and
other professionals. In addition, hospital-based SLPs may also
conduct and interpret instrumental swallowing evaluations and
assist with goal writing for implementation of children’s individ-
ualized educational program (IEP). In conjunction with maintaining
ongoing communication between family and medical professionals,
the school SLP will be responsible for monitoring the child’s
progress and initiating re-evaluations as the child demonstrates
improvement or regression in the clinical presentation or underlying
condition.
ASSESSMENT AND TREATMENT THAT AREEDUCATIONALLY RELEVANT FOR CHILDRENWITH COMPLEX MEDICAL HISTORIES
Some school systems have a standard approach for evaluating
students with dysphagia. Others may use an IEP as the mechanism
for starting this process (Homer, 2003). The dysphagia team in
St. Tammany Parish, LA, developed a team approach for the
diagnosis and treatment of children in the school setting (Homer,
2003). Their goals, which may be adapted by other school-based
teams, include the following:
& Ensure safe nutrition and hydration to every child during
school hours.
& Evaluate the student.
& Provide information to support the need for a videofluoroscopic
swallow study (VFSS) and observe the procedure when
possible.& Design and implement a treatment plan.
& Develop compensatory strategies to facilitate safe swallowing.
Team collaboration will be discussed further in the assessment and
management sections of this article.
Assessment in the Educational Setting
In most instances, by the time a child is in school, a diagnosis
of the underlying etiology has been made. Thus, the school-based
SLP is not examining a child for a differential diagnosis, but
rather for determination of function and safety for oral feeding.
Prognosis related to long-term safe and efficient oral feedingis likely to relate more closely to the etiology than to specific
observations during a single feeding evaluation. That said, school-
based SLPs have the advantage of being uniquely positioned to
interact with each child’s “real-world” environment. They have
opportunities to observe children eating and drinking in the typical
school environment. They can make their assessments of skills
and deficits over several meals or snacks, which allows the
team to consider the “whole child” in planning intervention
strategies.
Every evaluation of a child with swallowing and feeding con-
cerns begins with a thorough history, as do all evaluations that
are carried out by SLPs. The history focuses on swallowing and
feeding progression in relation to the child’s symptoms, underlying
medical conditions, nutrition status, and developmental progress.
Knowledge of general anatomy and physiology, and most impor-
tantly, neuroanatomy and neurophysiology of the upper aero-
digestive tract and the related body systems, is necessary because
that knowledge forms the basis for clinical observations.
The SLP’s physical examination begins with observations of the
child’s general appearance and overall well-being. It is important to
consider growth parameters and to observe respiratory patterns.
Although portions of this examination focus on oral sensorimotor
skills, it is critical that the SLP acquire information regarding the
acquisition of gross and fine motor developmental milestones as
well as level of cognitive and language (receptive and expressive)
development. The examination of the oral peripheral mechanism
is basically an examination of cranial nerve innervation so that
the sensory and motor deficits can be delineated. It also provides
important information regarding oral structures and motor func-
tion in regard to range and strength of oral movements neces-
sary for speech and feeding. Guidelines for oral sensorimotor
evaluation of children with swallowing and feeding problems
can be found in multiple sources and will not be covered in de-
tail here (Arvedson & Brodsky, 2002; Arvedson & Lefton-Greif,
1998; Logemann & O’Toole, 2000). Professionals who are involved
with any child who feeds orally should observe an oral feeding at
school, preferably with a familiar feeder.
The SLP also assesses the child’s communication skills relative
to feeding and mealtimes. The primary question to be answered is:
Does this child appear safe for oral feeding? If the answer is yes,
then one considers whether possible alterations would enhance the
child’s efficiency, safety, and oral skills. The answer is no when
feeding is associated with potential signs of aspiration, including
the onset of respiratory-related problems (e.g., coughing, choking,
changes in breathing or phonatory patterns), declines in alertness or
activity level, or compromises in the ability to handle oral secre-
tions. When a child who has been eating orally does not appear tofeed safely, the SLP should consider an instrumental swallowing
examination to assist in decision making for short- and long-term
goals. There may be qualifications to the answers yes and no, such
as “not safe for total oral feeding, but child should be able to take
spoon feeding with small volumes of smooth or lumpy mashed
food,” or “child appears to be able to handle liquid and spoon feed-
ing, but is not ready developmentally for solid foods that require
chewing.” These qualifications are dependent on multiple factors
that include the ability of the child to protect the airway, the devel-
opment of oral sensorimotor skills necessary to meet nutrition needs,
and the child’s overall developmental skill levels. Considerations
for referral for instrumental evaluation can be discussed by the
dysphagia team with likely recommendation to the child’s pedia-
trician for a referral to radiology at the nearest hospital, preferably
with pediatric specialists.
Instrumental Swallowing Assessment
When a school dysphagia team has concerns about pharyngeal
phase swal lowi ng probl ems and possi ble aspir ation with oral
feeding, a VFSS is needed to delineate the oral and pharyngeal
phases of swallowing as well as to visualize the upper esophagus
in order to report on the complete swallowing sequence. The expec-
tation is that the VFSS will provide information needed for parents
and professionals to make decisions regarding the potential safety
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of eating at school and to develop appropriate interventions for the
child with dysphagia. A physician’s order is generally needed to
obtain a VFSS.
Before the instrumental examination, the school SLP should
notify the hospital-based SLP about the concerns noted by the
school staff and the reasons prompting this referral (Homer, 2003).
The information provided by the school-based SLP is crucial for
the hospital-based SLP to complete a valid and reliable study. TheAppendix provides an overview of information that would be
helpful for the SLP in the hospital setting before an instrumental
assessment. Communication between settings is enhanced when
a representative from the school accompanies the child and his
or her caregiver to the hospital for the instrumental assessment.
A signed release of information should be obtained to ensure
permission for sharing information.
Findings from the VFSS should be helpful as the school dys-
phagia team members work with parents to make the best decisions
regarding the extent of oral feeding for each child, as well as
possible restrictions in textures of food and liquid. In addition,
recommendations from VFSS findings should contribute informa-
tion that will enable the school dysphagia team to identify thera-
peutic strategies to facilitate improved efficiency of oral feeding,
to make modifications in posture and position, to select utensils, and
to make other adjustments as needed.
Ideally, findings from the VFSS will include a summary of the
swallowing function related to the potential etiology for swallowing
abnormalities and an estimate of how reliably the findings reflect
the child’s swallowing status. If aspiration was noted during the
examination, the child’s response (or lack of response) to barium
contrast entering the airway must be described. It is also impor-
tant that the report specifies which textures of food or liquid were
aspirated; whether the aspiration occurred before, during, or after
swallows (Arvedson et al., 1994); and the physiologic bases for the
aspiration events. It is also critical to know whether aspiration
problems arise from material entering the airway related to swal-lowing or from gastroesophageal reflux (it is beyond the scope of
this article to cover this topic). Although minimal amounts of silent
aspiration occur in normal and healthy individuals (Gleeson, Eggli,
& Maxwell, 1997; Huxley, Viroslav, Gray, & Pierce, 1978), col-
laboration with the child’s medical team is critical for estimating the
amount of aspiration that can be tolerated by any child with complex
medical conditions who is more vulnerable to the respiratory se-
quelae of aspiration.
Management
Children should be able to participate in family and school
activities to their maximum potential. Appropriate management
strategies and prognostic indicators will be determined by each
child’s specific profile of underlying conditions, medical and
neurodevelopmental status (including oral sensorimotor skill
development), family and social systems, educational setting,
and ethical considerations. The selection of appropriate goals re-
quires consideration of how these factors influenced swallowing
and feeding development in the past and how they may continue
to influence these processes. Interventions related to swallowing
and feeding disorders may include the following:
& providing information and guidance to students, families, and
caregivers about the nature of swallowing and swallowing
disorders;
& consulting and collaborating with medical providers throughout
planning and intervention;
& training caregivers and educational staff on safe eating and
swallowing techniques; and
& instructing families, caregivers, and educators about the
social–emotional relationship between feeding and swallowing
and educational success. (ASHA, 2000, p. 281)
The SLP’s role in direct therapeutic intervention is to focus on
developmentally appropriate oral sensorimotor and feeding skills
that support airway stability and nutritional adequacy. Table 2
provides a framework for consideration of goal development. Each
school district, team of professionals, and child with family will
be faced with unique challenges. Two case studies follow as exam-
ples of problem solving for children with complex medical issues.
Case 1: 8-Year-Old Child With Complex Medical
(Neurological) Issues
Sammy has a diagnosis of CP, primarily characterized by
choreoathetosis and ballismus (abnormal jerking or swinging
movements). This combination of neurologically based motor
deficits resulted in complex interactive issues. Although Sammy
was nonverbal, his receptive language and cognitive skills appeared
only mildly reduced. He wanted to eat and drink, although his
parents reported that he expended significant effort as he worked
to bring his lips together, get his tongue moving in an organized
way to form a bolus, and produce swallows after as long as 60 s.
Sammy coughed at times on liquid that he drank by straw, which
resulted in less spillage than an open cup. Mealtimes were taking at
least 1 hr for a fairly small volume of food and liquid. Sammy had
not gained weight adequately for the previous several months.
Pertinent history. At 22 years of age, Sammy had demonstrated
incoordination of swallowing on a VFSS without frank aspiration.
His parents developed techniques to facilitate the most efficient mealtimes possible.
Current status. At school, Sammy was in a half-day program,
primarily because of his feeding problems. Sammy’s parents were
determined to keep Sammy feeding totally orally. The team mem-
bers needed to decide whether oral skill practice should be incor-
porated into speech motor focuses that were part of Sammy’s IEP.
Dysphagia team members have to keep in mind that over time,
Sammy’s difficulty in meeting nutrition and hydration needs will
likely become even more problematic as his caloric needs increase.
Case 2: 7-Year-Old Child With Complex Medical
(Respiratory) Issues
Emily was delivered at 36 weeks gestation. She was diagnosed
with mild CP, developmental delays, reactive airway disease, and
dysphagia. Emily’s mother took her to the pediatrician because of a
2-month history of coughing and congestion that began immedi-
ately after the volume of oral feedings was increased in an effort
to transition Emily from tube to oral feedings. Previously, most
of Emily’s nutrition and hydration was delivered by gastrostomy
tube (GT), and she was given limited amounts of pureed food and
a few sips of water daily. Her interest in eating and drinking was not
clear to caregivers. Her mother reported that the school wanted
Emily to increase oral intake so that she could eat lunch in the
cafeteria and participate more fully in school-related activities.
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Past history. Shortly after birth, Emily was noted to have pro-found hypotonia, a poor suck, and significant silent aspiration on an
upper gastrointestinal (UGI) series. A GT was placed after Emily
failed to progress with oral feeding during several months at a
rehabilitationhospital. Emily was also diagnosed withreactive airway
disease, moderate obstructive sleep apnea, gastroesophageal reflux,
recurrent pneumonia, and an undefined neuromuscular process. At
2 yearsof age, Emily participated in a VFSS that demonstrated a delay
in swallow onset that resulted in silent aspiration before swallows
with thin and thick liquids andpoor pharyngeal clearance with pureed
contrast. She developed respiratory problems characterized by
increased congestion and chronic coughing each time efforts were
made to increase her oral intake. Emily had developmental delays
and began walking at 3 years of age, speaking 3–
5 words at 2 years,and speaking complete sentences at 6 years.
Current status. A repeat VFSS showed no change in swallowing
function or patterns of aspiration from the prior examination. The
school and medical teams need to determine appropriate swallowing
and feeding goals with updated VFSS findings and, more impor-
tantly, in response to Emily’s respiratory changes when oral feedings
were increased.
Case Study Questions and Answers
What do school professionals do when they feel that a child
is not safe for oral feeding at school but parents insist that the
Table 2. Common factors that influence the determination of appropriate goals for children with dysphagia.
Factors Past Current
Appropriate goals(prognosis and
compensatory abilities)
Anatomic or Structural DefectsSite of defect and onset (congenital or acquired)Potential phase(s) of swallowing impairment Stressors
Neurological DeficitsSite and onset of pathology Nature of pathology (acute, chronic [static or progressive])
Potential phase(s) of swallowing impairment Stressors
Medical/Health InfluencesCardiopulmonary stability Nutritional statusImmune systemMedicationsEndurance
Neurodevelopmental StatusCurrent and anticipated skill levels (communication, gross & fine motor skills)
State (infants)Attention span, language, cognitive functionSensorimotor integration problemsTemperament or behavior (including feeding refusal, aversion, appetite)
Oral Motor SkillsInefficient or abnormal patternsPrevious non- & nutritive experiencesPrevious therapy experiences
Caregiver/Family FactorsEmotional /economic support systemsEducational levelParenting skills, concerns, needsCultural influences
Access to medical servicesRelationship w/ medical & swallowing and feeding teams
Educational/Swallowing and Feeding Team FactorsSettingTeam members (e.g., type, disciplines, training)Access to and availability of (re)habilitation servicesStrengths & weaknesses of team or team members
Relationship w/ caregiversIndividual educational plan goals
Other Factors: Ethical Considerations
Principles
© 2006 M. A. Lefton-Greif and J. C. Arvedson. All Rights Reserved. Reprinted with permission.
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child be fed and that “ he will be just fine if you use our techniques” ?
How do educational settings maximize student participation
when a child is not safe for oral feeding? SLPs and other members
of the school-based team are often placed in very difficult situations
when parents want a child fed in school “ just like the child does
at home.” When faced with such dilemmas, professionals may need
to invoke ethical principles and considerations ( Huffman & Owre,
2008) along with clinical decision making. Numerous factors needto be considered, primarily those related to the adequacy of
nutrition/hydration (or inadequacy in some cases) and pulmonary
status. It is important to remember that oral sensorimotor inter-
ventions or other therapeutic procedures must never jeopardize the
adequacy of the child’s nutrition, hydration, or respiratory status.
Parents should be included in the process of decision making,
making it collaborative rather than adversarial. Competent parents
have autonomy or the right to make informed decisions about fac-
tors affecting the health of their children. However, professionals
also have to make decisions based on evidence related to the
child’s overall status, with safety as the uppermost consideration.
The cases described above provide examples for possible decision-
making processes.
Case 1: Alternatives for school staff members include (a) the
parent coming to school to feed Sammy; (b) the parents
demonstrating their feeding techniques with at least two primary
staff members trained to feed Sammy for 10–15 min each
session, and parents making up the needed volume at home;
or (c) continuing to adjust Sammy’s schoolday so that he does
not need to be fed at school.
Case 2: The school staff and caregivers need to identify “safe”
activities that allow Emily to participate in her educational
program as fully as possible. It may be appropriate for goals
to focus on oral motor and communication skills development
during lunch (with her “safe” amount of intake) or at other times
during the day.When is a repeat VFSS indicated? Concerns about the poten-
tial long-term effects of ionizing radiation for children (de Jong
et al., 2006) mandate that a repeat VFSS should be considered
only when there are specific questions or concerns that require
information from a repeat study. The primary purpose of the VFSS
is to define the pharyngeal physiology. Therefore, when the dys-
phagia team determines that a student has demonstrated changes
that may alter management plans, a repeat VFSS can be considered,
particularly when definite pharyngeal phase disorders or problems
were noted on a previous examination. School SLPs play a very
important monitoring role for children with complex medical issues.
Indications of regression may include reduced levels of alertness,
prolonged feeding times, increased signs of respiratory illnessesor airway concerns (e.g., coughing, congestion, exacerbations of
reactive airway disease), signs of gastrointestinal problems (e.g.,
gagging, regurgitation or vomiting, or growth compromise), and
less efficient oral skills for forming a bolus and for initiating swal-
lows that may in turn result in prolonged mealtimes and adversely
affect the child’s nutrition and hydration status. Conversely, some
of these functions may improve. Some children may become more
alert or mealtimes may become shorter because of greater oral
efficiency. The bottom line is that observations indicate that change
is occurring and information is needed for the management of
feeding. The delivery of appropriate medical care is contingent on the
child’s physician being advised of any changes in condition.
Case 1: A repeat VFSS was requested when Sammy was 9 years
old. Mealtimes were taking 45–60 min, with increased effort
by Sammy and his parents, who continued to facilitate as
efficient mealtimes as possible. Sammy appeared more stressed
as he was eating and drinking. VFSS findings revealed
multiple events of silent aspiration, most pronounced just
before swallows of liquid because of delayed initiation of the
pharyngeal swallow, but also on residue of pureed and mashedfood consistent with reduced tongue base retraction to the
posterior pharyngeal wall and reduced pharyngeal contractions.
By that time, it was clear that Sammy could not be expected
to meet his nutrition and hydration needs strictly orally.
Case 2: Emily’s mother and pediatrician requested a repeat
VFSS as soon as Emily developed respiratory problems in
response to increased oral intake. The findings of the VFSS
showed silent aspiration of liquids secondary to delayed
pharyngeal swallow initiation and residue of pureed contrast
associated with poor base of tongue retraction and pharyngeal
contraction. Residue accumulated with successive swallows
but did not result in further aspiration on the images obtained.
This information enabled the school-based team to developmore appropriate and more consistent goals for school and
home. Specifically, Emily resumed her previous feeding
routines, including getting small tastes of pureed foods for
enjoyment and participation in school lunch activities.
On what basis can the school-based SLP incorporate oral
sensorimotor skills for feeding into the IEP? The Individuals With
Disabilities Education Improvement Act (IDEA, 2004) mandates
that school systems provide related health services. In turn, IDEA
requires school systems to provide free and appropriate public
education (FAPE) to all children, which means that school staff
members must ensure that children are safe at school. That safety
mandate includes the need for each child to receive nutrition and
hydration as appropriate while the child is in school. IDEA revi-sions advance trends for mainstreaming medically complex children
with swallowing and feeding problems. These changes have re-
sulted in increases in the prevalence of dysphagia in “regular ”
schools. The ASHA Guidelines for the Roles and Responsibilities
of the School-based Speech-Language Pathologist (ASHA, 2000)
make it clear that dysphagia is in the scope of practice for SLPs.
Those SLPs who have been trained in dysphagia have an ethical
responsibility to ensure that competent services are provided for
children on their caseloads. The ASHA guidelines (2000, p. 281)
state,
Swallowing function treatment is conducted to improve student ’soral, pharyngeal, and laryngeal neuromotor function and control andcoordination of respiratory function with swallowing activities. This
treatment can (1) facilitate chewing and swallowing safely andefficiently and (2) integrate swallowing function intervention withcommunication function intervention.
Case 1: Sammy’s SLP incorporated short periods of practice to
improve his oral sensorimotor skills. She included small volume
tastes of food and water to facilitate purposeful swallowing,
with hope that management of secretions would be positively
affected.
Case 2: At 7 years of age, Emily had a confirmed diagnosis
of congenital myotonic dystrophy (CMD, Type 2). This
condition is usually static (Table 1) and may include swallowing
deficits that affect all phases of swallowing as well as lower
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gastrointestinal tract dysmotility. Early treatment may include
feeding tube placement (Moxley & Yurcheshen, 2005). This
scenario is particularly interesting because identification of
Emily’s underlying condition should alert the school team of
the potential need to modify her IEP at more frequent intervals
as she ages. CMD is associated with poor and slow early de-
velopment followed by an accelerated rate of improvement.
Hence, Emily’s developmental progress is likely to be more
rapid during school years than was previously expected or
predicated with other static conditions (e.g., CP), and her educa-
tional goals will need to be adjusted accordingly. Following the
VFSS, Emily’s SLP worked on oral sensorimotor skills (e.g.,
lip closure) during communication activities (e.g., bilabial
consonant productions) and during her “safe” lunchtimes (to
maintain food in her mouth). Further advancement of oral feed-
ings will need to be considered in the context of Emily’s pro-
gression. It is likely that a VFSS will be repeated before the team
recommends any significant increases in oral intake. At each
step of the process, goals need to support nutrition and hydration
adequacy as well as pulmonary stability.
What programs can the school provide when a child is fed by GT with physician orders that state “ child is to be kept NPO
(nothing per oral)” ? There is no simple answer to this question.
Multiple variables that change over time must be considered for each
child. All children have saliva that should be swallowed on a regular
basis. Saliva is important for moistening the mouth, pharynx, and
esophagus. The oral cavity is filled with bacteria. It would seem
logical that some children would benefit from sensory cues to
produce swallows regularly, whether saliva or tastes of food and
liquid. Oral stimulation with gum massagers and other utensils may
stimulate increased salivary production. Children who are not
swallowing saliva regularly may be at increased risk for aspiration
of their secretions.
Data are needed to determine whether miniscule tastes of food
or liquid may facilitate more frequent swallowing of saliva while
keeping children at minimal risk for aspiration complications. On
the basis of clinical experience, some children appear to produce
harder and quicker swallows when they get a drop or two of a strong
flavor (e.g., lemon juice, pickle juice, salsa, or spicy spaghetti
sauce). Each child’s responses to any kind of oral stimulation/
practice must be interpreted by SLPs in order to evaluate the child’s
status and potential for increased volume of oral intake. Oral stimu-
lation experiences should never be stressful to children. Children
should never be force fed. There is a fine line between nudging and
forcing.
Most children respond better to some form of oral stimulation
with or without true oral feeding when they are given frequent and
brief opportunities for practice. Children with severe neuromotor deficits and demonstrated pharyngeal phase swallowing problems
may never become total oral feeders to meet their nutrition and
hydration needs, but many will achieve some safe level of thera-
peutic and pleasurable oral feeding experiences. For these children,
more appropriate therapies may focus on oral hygiene, control
of saliva, and communication skills. Poor oral hygiene has been
shown to be an important risk factor for pneumonia in adults
(Langmore et al., 1998). Although comparable data are not avail-
able for children, it would seem logical that good oral hygiene
would be an important goal for all children, particularly those
with complex medical or health care issues. SLPs and other
members of the dysphagia team must be well aware that oral
sensorimotor intervention procedures should never jeopardize a
child’s pulmonary or nutrition/hydration stability.
Under what circumstances can the dysphagia team at school
consider a goal for weaning from GT feedings? For some children,
improving the efficiency of oral sensorimotor skills for feeding
may be one step in the process of increasing their volume of oral
intake. It is critical that a major focus on increasing the volumeof oral feeding should be done only with involvement of a physician
and dietitian who monitor the child’s overall health status and
adequacy of nutrition/hydration status. Many children with com-
plex medical conditions do not demonstrate appetite or hunger,
which is important and affects both the speed and efficacy of
treatment (Linscheid, Budd, & Rasnake, 1995). A psychologist
who specializes in behavior-focused intervention with feeding
disorders may also be an integral member of the team for those
focuses. Medical input on pulmonary status is needed for children
with underlying lung disease. These children may have more
difficulty tolerating aspiration than children without pulmonary
problems. Conditions for weaning include stable respiratory health
as well as other medical issues (e.g., seizure disorder well managed
with medications, gastroesophageal reflux controlled by medica-
tion, vomiting decreased or eliminated, gastrointestinal motility
disorder improved), demonstrated weight gain via tube feedings
with some tolerance for bolus tube feedings (e.g., no vomiting),
and safety in terms of minimal to no risk for aspiration with oral
feeding.
CONCLUSION
Students with complex medical conditions and dysphagia are
commonly attending regular schools as part of the IDEA mandates
for FAPE for all students in the least restrictive environment. SLPsin the schools are now faced with the need to have knowledge
and skills pertinent to these children. The complex interactions of
respiratory function and neurodevelopmental skills must be appre-
ciated and understood by SLPs, who in many instances take the
lead for the development of dysphagia teams and who incorporate
oral skills related to feeding into their goals for children who also
have communication deficits. A team approach is critical so that
“whole” child needs are considered in the educational environment.
SLPs are within their scope of practice to participate in the team
process and to evaluate and carry out intervention with children
who have oral skill and swallowing problems that may impact
their educational program.
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Received June 5, 2006
Accepted October 16, 2006
DOI: 10.1044/0161-1461(2008/023)
Contact author: Maureen A. Lefton-Greif, Division of Pediatric Pulmonary,
Johns Hopkins Children’s Center, The David M. Rubenstein Child Health
Building, 200 North Wolfe Street, Eudowood Division of Pediatric Respiratory
Sciences, Room 3017, Baltimore, MD 21287-2533. E-mail: [email protected].
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APPENDIX (P. 1 OF 2). SAMPLE FORM OF INFORMATION PROVIDED BY A SCHOOL-BASED SPEECH-LANGUAGEPATHOLOGIST (SLP) TO A HOSPITAL-BASED SLP BEFORE AN INSTRUMENTAL SWALLOWING EVALUATION
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APPENDIX (P. 2 OF 2). SAMPLE FORM OF INFORMATION PROVIDED BY A SCHOOL-BASED SPEECH-LANGUAGEPATHOLOGIST (SLP) TO A HOSPITAL-BASED SLP BEFORE AN INSTRUMENTAL SWALLOWING EVALUATION
© Lefton-Greif and Arvedson, 2006
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DOI: 10.1044/0161-1461(2008/023)2008;39;237-248 Lang Speech Hear Serv Sch
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