Speech-language pathologists in schools have found their roles expanding in recent years to include identification, evaluation, and management of students with feeding and swallowing disorders (dysphagia). These students come to school with a variety of diagnoses as a basis for their dysphagia. They present with a wide range of swallowing deficits and levels of severity that result in multiple challenges for the school-based dysphagia team. These challenges require a team approach, which can make a significant, positive difference for students with severe disabilities.
A school-based dysphagia team, whether district-wide or within a single school, typically consists of the parents/caregivers, SLP, occupational therapist, physical therapist, nurse, teacher, dietitian (ideally each school district has access to a knowledgeable pediatric-specialized dietitian), paraprofessionals, and others involved in the care of these medically complex and fragile children. No one discipline can, nor should, manage children with issues surrounding their feeding and swallowing. School-based teams should be in regular communication with medically-based teams that include physicians so that all health, developmental, and feeding issues are handled in ways that maximize each student's safety for oral (or tube) feeding and to facilitate the ability to participate fully in the academic process. The need for teams varies from district to district and, more importantly, from school to school within a district. There are several areas of SLP involvement, which include determining educational relevance of dysphagia services, knowledge of health issues, and processes for establishing a dysphagia team.
Relevant Laws and Regulations
In 1975, the Education for All Handicapped Children Act (P.L. 94-142) mandated local schools to provide services to students with severe disabilities, including medically fragile students. In the next several years, students were typically seen in separate facilities and had minimal or no contact with their typical peers. In recent years, however, local school districts have become increasingly responsible for serving students with complex needs in the least restrictive environment, which often includes their home-district school. All school personnel must become knowledgeable and skilled in working with medically fragile students as well as those with multiple disabilities. U.S. Supreme Court decisions also have influenced the provision of swallowing and feeding services to children in school settings.
A major impetus was added in 1997 with the Individuals with Disabilities Education Act (IDEA, 1997), followed by the 2004 Individuals with Disabilities Education Improvement Act (commonly known as IDEA 2004) and the recently released accompanying regulations that direct school systems in providing services to students with complex medical issues. In addition, state regulations may have an impact on provision of services for children with feeding and swallowing disorders. SLPs must apply the ASHA Code of Ethics and relevant scope-of-practice elements for swallowing disorders as well as state licensing laws. It is critical that SLPs have knowledge of legal and ethical issues involved in serving students with dysphagia, as well as an awareness of funding sources at the state and local levels.
Part B of IDEA pertains to students ages 3 through 21 years. In Part B, 13 disability categories are described that are governed by provisions of the act and its accompanying regulations. IDEA 2004 allows states to include a 14th disability-developmental delay-for children 3 through 9 years [PR 34 C.F.R. §300.8(b)]. Although dysphagia is not one of the designated disabilities, provision of dysphagia services may be appropriate when the problem indirectly affects academic achievement. A child who is classified as "other health impaired" may qualify for dysphagia services as long as the deficiencies result in the child's "limited strengths, vitality, or alertness" (Gorin, 1996, p. 1) that are likely to affect academic achievement.
Students with autism, developmental delay, mental retardation, multiple disabilities, orthopedic impairments, or traumatic brain injury may have accompanying or undiagnosed feeding and swallowing disorders. IDEA 2004 states that health services are part of related services providing education to children, along with the requirement that schools provide a free and appropriate public education.
Indeed, this mandate requires school personnel to ensure that children are safe at school, including mealtimes. Students must have stable health and sufficient energy to participate in school activities. The source of that energy stems from adequate nutrition (calories and specific nutrients) and hydration (liquid). Most students are in school during the hours that include breakfast, lunch, and snacks.
Serving Students with Dysphagia
SLPs may be the only professionals in schools who have specific dysphagia coursework and training, although their level of competence and comfort in dealing with children with dysphagia may vary. Not all graduate programs have a focused pediatric dysphagia course, which means that individuals must seek additional knowledge through reading, continuing education courses, seeking a mentor who has the appropriate knowledge and extensive experience, and getting some "hands-on" experience.
Provision of services to individuals with dysphagia is within the ASHA scope of practice. ASHA's Code of Ethics mandates that SLPs must be competent in any area in which they provide services (ASHA, 2002). Most SLPs are skilled collaborators and work well with professionals from other disciplines as well as parents and other members of families. Given the level of knowledge, skills, and scope of practice, it is logical that SLPs serve in the role as manager for the dysphagia team. SLPs that do not have the needed knowledge and experience are strongly encouraged to gain the knowledge needed to develop a program. Dysphagia is a low-incidence disorder; however, the number of students in need of services for feeding and swallowing disorders will increase as more children become mainstreamed into regular school classrooms. These students' health and well-being depend on appropriate and efficient services within the school setting.
Roles of SLPs can vary widely depending on the needs of students in the school system, their diagnoses, and composition of the team. Roles include, but are not limited to:
- Identification, evaluation, management, and treatment for dysphagia and related feeding disorders
- Direct and indirect services
- Consultative services
- Case management and collaboration
Underlying Health Issues
Knowledge of the causes of feeding and swallowing problems for each student is critical for determination of prognosis as a part of planning intervention. Systems that must be considered in the child who is medically fragile include the airway, nutrition and hydration status, gastrointestinal tract, neurodevelopmental status, as well as responsiveness to oral feeding attempts (sensory and behavior) if the student is safe for oral feeding.
- Airway–all interventions to enhance oral feeding require a stable airway. In cases of airway problems, the work of feeding may not be possible since the work of breathing takes precedence. SLPs should note the status of breathing (quiet or noisy, nasal breathing with lips together or mouth open, inspiratory stridor, gurgly sounds that may be a sign of secretions in the supraglottic airway), need for oxygen, or presence of a tracheostomy. Children with major airway issues may have a nurse or assistant with them at school who's responsible for their well-being. Parents are the primary source for information related to special considerations needed for their children. Treatment by the SLP or any other therapist must never jeopardize the health and well-being of a child.
- Nutrition and hydration status–children in pre-school and early elementary education should gain weight steadily, although not as rapidly as in the first two years of life. A lack of weight gain over a period of a few months is like a weight loss in older children and adults. Constipation is a frequent consequence of inadequate nutrition, especially reduced fluids and fiber. These children may not want to eat. Medications can have an effect on nutrition and appetite. Members of the dysphagia team should know the medications that children are taking, along with possible side effects. Related professionals do not make medication recommendations, but note changes in a child's level of alertness in school. They check with parents about changes in sleeping patterns. In preteen and teen years, a child's nutrition needs change, usually requiring increased caloric intake. Some of these students may require supplemental nutrition. Individualized plans are essential to ensure these issues are addressed.
- Gastrointestinal (GI) status–members of the dysphagia team should monitor students closely for signs of GI problems. In the case of known GI concerns, they can communicate with the student's physicians on a regular basis to update status and to note concerns. Gastroesophageal reflux (GER) is quite common in children, but manifestations of GER may be variable and typically vary over time. Although the manifestations of GER are due to effects of gastric acid, abnormalities of motility and sphincter function cause GER. Complications can vary considerably from recurrent emesis/vomiting, malnutrition, and esophagitis with food refusal. For example, some children vomit intermittently and keep eating without any decrease in appetite or hunger. Other children may vomit only occasionally, but they get stressed and may need to be seen by their physician to determine underlying causes and the best course of treatment. It is not within the scope of practice for SLPs to diagnose or manage GER in any setting, although they may initiate referrals.
- Neurodevelopmental status–students with developmental delays or deficits should have management plans that address their developmental skill levels, not their chronologic age. Students with defined brain damage (e.g., stroke, brain tumor, traumatic brain injury) and other neurological deficits (e.g., muscular dystrophy, cerebral palsy, etc.) are usually at higher risk for aspiration with oral feeding, particularly on thin liquids (Arvedson, Rogers, Buck, Smart, & Msall, 1994). Members of the dysphagia team in consultation with parents and the child's physician may make a recommendation for a videofluoroscopic swallow study when information regarding the physiology of swallowing would be helpful.
- Responsiveness to oral feeding attempts–Some students have had significant medical/surgical issues when they were younger, but are medically and surgically stable by the time they present to the school dysphagia team. However, they may not eat and drink as expected for children of their age and skill levels. Other children without a significant medical/surgical history may eat selectively and sparingly. Oral sensorimotor skills may be primarily delayed or disordered, usually in combination and not in isolation. Problems are not typically strictly motor or sensory, but behavioral responses that may relate to past experience with being "forced" to eat and drink. There may be refusals, e.g., pushing a spoon or cup away as it approaches the mouth, turning the head away from the feeder, throwing food, getting upset, or throwing a tantrum. SLPs can assist in determining the best means of communication and development of ways to build on what the student does independently or with minimal assistance.
Establishing a Dysphagia Team
A system-wide procedure is likely to be the best scenario in establishing a dysphagia team. Benefits include consistency of approach throughout the school district such that all employees are knowledgeable about how to react and what procedure to follow when presented with a student with a swallowing disorder. According to Robert L. Hammonds, an attorney for St. Tammany Parish School District in Louisiana, "The keys to minimizing liability exposure are planning, procedures, training, and the proper execution of those procedures." The procedure's driving force is the Individualized Education Program (IEP). During the IEP meeting, team members should:
- Gather medical history
- Discuss individualized health plan that parents sign
- Release of medical records form signed by parent
- Discuss the need for clinical swallowing/feeding evaluation or an instrumental swallow study at a medical facility, if indicated
- Develop an IEP to address swallowing/feeding issues
- Sign the IEP (parents and school personnel sign in agreement of the plan)
Intervention may incorporate various strategies that are as evidence-based as possible in terms of efficacy and potential functional outcomes. Strategies include, but are not limited to:
- Posture and positioning
- Dietary changes (caloric enhancement per dietitian, as well as texture, taste, temperature alterations of food and liquid)
- Utensil modifications (per occupational therapy consult and recommendation)
- Oral sensorimotor therapy
- Broad-based sensory approaches
- Caregiver education and training
Advantages of a team approach include the carryover possibilities from one discipline to another. This carryover does not mean taking the lead for a strategy that may be outside an individual's scope of practice, but to monitor and provide reminders as directed by the lead professional for that particular task.
Issues related to feeding and swallowing are complex. There is potential for significant medical and legal risks. However, the mandate to provide services to students with dysphagia in school is clear. The opportunities for SLPs with appropriate knowledge and skills are growing as more children with these needs are spending several hours five days per week in the school setting. Adequate nutrition as an underpinning for full participation in the educational program is essential.