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Clinical Forum |
Contact author: Emily M. Homer, 408 East 16th Avenue, Covington, LA 70433. E-mail: emily.homer{at}sptsb.org.
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ABSTRACT |
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 TOP ABSTRACT ADOPTING A SYSTEMWIDE DYSPHAGIA...TYPES OF DYSPHAGIA TEAMS...COMPONENTS OF A DYSPHAGIA...ONE SYSTEM'S EXPERIENCECONCLUSIONAPPENDIX AAPPENDIX BAPPENDIX CAPPENDIX DREFERENCES |
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Purpose: Many school-based speech-language pathologists (SLPs) are hampered in participating in managing children with dysphagia by their school systems' lack of supportive policies and procedures. A need exists to better define the dysphagia-trained SLP's role and clarify the district's responsibility. The purpose of this article is to address the critical administrative issues and administrative components surrounding dysphagia in the schools and to offer the SLP some solutions to these problems.
Method: A narrative review of the relevant literature addresses the following questions that are important for administrative planning and implementation of programs for students with dysphagia in the schools: (a) Should school systems assume responsibility for working with students with dysphagia? (b) Why is a system-supported procedure recommended? (c) What service delivery models can a system use to serve students with dysphagia? (d) What components should be included in a dysphagia procedure?
Conclusion: SLPs should be proactive in providing dysphagia services to students in the schools. A procedure that is adopted by a school system for all of its employees to follow will offer direction and guidance. This system-supported procedure may provide assurance that dysphagia services are being provided in a professionally acceptable manner. Ongoing staff development and training is essential. A system can implement dysphagia services using existing staff, when possible, and policies and procedures that have been approved by the system.
KEY WORDS: pediatric dysphagia, public schools, system-supported procedure, interdisciplinary teaming, training
Many speech-language pathologists (SLPs) who graduate with coursework and training in dysphagia are interested in working with children and, as a result, are choosing to work in school systems (Owre, 2001). They bring with them knowledge and skills for working with students with dysphagia and the ethical responsibility to help students who need their skills (Lefton-Greif, 2001; Wagner, 1998, 2001). The result has been that SLPs have accepted the challenge of working with students with dysphagia in many instances in the absence of set procedures or policies concerning the diagnosis and treatment of swallowing disorders in the school setting. At the same time, the debate continues whether dysphagia should be addressed in a school system (Wagner, 2001). Some professionals have expressed to this author that dysphagia is a medical issue and is not the responsibility of the school system or the school-based SLP. In 2001, Lefton-Greif suggested that SLPs who have been trained in the evaluation and management of dysphagia were faced with the ethical dilemma of using their knowledge and skills in a setting that often offers little or no support in terms of a procedure to follow, roles and responsibilities of professionals involved, proper training on all levels within the school system, administrative support, financial support in terms of instrumental diagnostics and therapeutic intervention, and adequate personnel.
Since 2001, some school systems have adopted procedures to be used throughout their systems to offer guidance and direction in the identification and treatment of students with dysphagia. The process of establishing an interdisciplinary dysphagia program in a school system in Louisiana was described in Homer, Bickerton, Hill, Parham, and Taylor (2000). This system has an organized team that ensures that students with swallowing and feeding disorders receive adequate and safe nutrition and hydration while at school. Another system, the Macomb Intermediate School District in Michigan, formed a task force consisting of teachers, SLPs, occupational therapists (OTs), physical therapists (PTs), nurses, social workers, and administrators who wrote a manual of guidelines for serving students with dysphagia. Currently, the state of Michigan is working on state guidelines based on the Macomb system's work (M. Staskowski, personal communication, September 20, 2006). Connecticut's State Department has written in draft form an extensive document titled Guidelines for Feeding and Swallowing Programs in Schools and Birth to Three Settings (Isakson & Richards, 2006), which offers detailed information for school personnel on the management of dysphagia in the schools. Selected school districts in Florida, Texas, and Virginia have procedures that have been in effect for years.
These school systems have accepted the responsibility of diagnosing and treating dysphagia in the schools and, as a result, have addressed many of the dilemmas expressed in 2001 by Lefton-Greif. They have taken steps to ensure that students with dysphagia are fed safely at school and that school system employees have the knowledge and skills needed for feeding children with dysphagia in their classes. However, SLPs who work in school systems and states that have not included dysphagia services in their policies and procedures continue to experience many challenges associated with dysphagia identification and treatment in the school setting. The purpose of this article is to provide solutions to some of the pressing issues surrounding dysphagia in the schools.
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ADOPTING A SYSTEMWIDE DYSPHAGIA PROCEDURE |
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TOPABSTRACTADOPTING A SYSTEMWIDE DYSPHAGIA...TYPES OF DYSPHAGIA TEAMS...COMPONENTS OF A DYSPHAGIA...ONE SYSTEM'S EXPERIENCECONCLUSIONAPPENDIX AAPPENDIX BAPPENDIX CAPPENDIX DREFERENCES |
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Forming a Task Force
School system personnel who are interested in establishing an interdisciplinary dysphagia team may find it helpful to form a task force consisting of district employees such as SLPs, OTs, school nurses, and teachers. This task force of professionals should be responsible for providing information to administrators concerning the importance of working with students with dysphagia and designing a plan for addressing dysphagia that fits within the structure of the system (Homer et al., 2000). Typically, the SLP is the most trained and knowledgeable professional in the area of pediatric dysphagia management in the school system and, therefore, should be the driving force in this effort (American Speech-Language-Hearing Association [ASHA], 2002; Homer, 2003).
The task force will need to prepare information that will assist the process of informing school personnel, including school system administrators, on swallowing and feeding disorders in children. The task force may begin this process by providing a clear definition of dysphagia, including its signs and symptoms, as well as information regarding which students are most at risk and the complications associated with the disorder (see Appendix A). Administrators who understand the disorder and its effect on students while at school will then be able to make informed decisions regarding the system's responsibility to students with dysphagia.
Summarizing Educational Relevance and Legal Responsibilities
A system may have questions regarding the educational relevance of providing swallowing and feeding services in the schools as well as the legal responsibilities for a system to provide these services. It is suggested that the task force prepare a summary of statements that support the responsibility of a school system to provide swallowing and feeding services to students with dysphagia in the schools. It is well documented that undernourishment affects a student's alertness, energy level, and cognition (Arvedson, 2000; Arvedson & Brodsky, 2002). According to the Individuals With Disabilities Education Improvement Act (IDEA, 2004), all students are entitled to a free and appropriate public education (FAPE). Students who suffer from undernutrition are less able to access the school curriculum and, as a result, are denied FAPE (Arvedson, 2000; Arvedson & Brodsky, 2002; Arvedson & Homer, 2006). In a survey conducted in a Louisiana school system, parents and teachers reported that students observed by the dysphagia team were eating better during mealtimes and appeared happier and more alert. They also indicated that some of the students were gaining weight and experiencing a reduction in the number of illnesses related to respiratory infections (Homer, 2003).
In addition to preparing information on educational relevance, the task force may summarize for administrators federal laws such as IDEA (2004), the Rehabilitation Act of 1973 as amended (Section 504), and the Americans With Disabilities Act (ADA), as amended in 1990, (1991), which offer information on providing services to students with disabilities. Furthermore, the task force may provide administrators with case laws that support dysphagia management in the schools and may provide a legal framework for services (O'Toole, 2000; Power-deFur, 2008).
Establishing the Number of Students With Dysphagia
In supporting the argument that initiating dysphagia services is beneficial, an estimate should be provided to the system administration of the number of students who may need these services. This accounting should include those students who have already been diagnosed with dysphagia, those with signs and symptoms of dysphagia, and populations known to be at high risk (Arvedson, 2000, 2001; Arvedson & Brodsky, 2002; Logemann, 1998; Newman, 2001; Sheppard, 2001). A detailed description of this process may be found in Homer et al. (2000).
Summarizing Safety Issues
Information on the safety risks associated with dysphagia in students may help administrators to make informed decisions. It may be beneficial for the task force to provide a summary of the safety issues that result from students with dysphagia being fed incorrectly at school. Students with dysphagia are particularly susceptible to undernutrition, especially if their swallowing and feeding disorder is left untreated. According to Arvedson (2000), "All children need adequate nutrition provided in nonstressful ways so they can maximize their learning potential in educational settings" (p. 28). A child suffering from undernutrition or failure to thrive often has significant developmental delays and frequently will exhibit some behavioral symptoms that may include lethargy and irritability. Students may be hypotonic, weak, and lack stamina. If undernutrition is severe and longstanding, brain growth may be affected (Arvedson & Brodsky, 2002). With improved technology and medical care, preterm and term infants with congenital problems are surviving. Students who begin their lives in the neonatal intensive care unit (NICU) of hospitals have a high prevalence of dysphagia. They are eventually placed in the schools, where the ongoing medical issues that surround them in infancy often continue as they become eligible to attend public school (Arvedson, 2000; Arvedson & Brodsky, 2002; Logemann, 2000; Newman, 2001).
Aspiration can be a major safety risk for students with dysphagia. According to Tutor (2001), the combination of aspiration and dysphagia has been linked with significant respiratory morbidity and, in some cases, mortality in infants and children. Treatment and/or management of students with dysphagia may prevent aspiration (ASHA, 2007; Logemann & Robbins, 2007). Students who are developmentally delayed often present with poorly developed oral motor skills. These students with oral preparatory and oral phase dysphagia are at high risk for coughing, choking, and congestion during meals (Arvedson, 2001; Sheppard, 2001; Sonies, 2003). According to Sheppard, some of these students will have eating behaviors that also predispose them to choking. Diet modifications, behavior management of feeding, and oral motor exercises to improve chewing skills are some of the interventions that may be used by the interdisciplinary dysphagia team to reduce the risk of choking (Arvedson, 2001; Sheppard, 2001).
Identifying and Estimating Expenses
The school system's administration may want an estimate of potential expenses that may be incurred following establishment of a dysphagia team. This can be determined by looking at four areas: personnel, training, materials, and instrumental evaluations.
Personnel. When educating students, school systems frequently operate using an interdisciplinary team approach (Freeman, Miller, & Ross, 2000). This team approach, which is already being used in school systems, can provide a successful framework for swallowing and feeding teams and may require little if any additional personnel. School systems frequently have on staff SLPs, OTs, PTs, and nurses, as well as teachers, paraprofessionals, and administrators. Some systems, however, will not have SLPs with dysphagia knowledge or training. Those systems may contract with private, experienced, and knowledgeable SLPs to assist in addressing dysphagia in the schools. Systems may choose to train their existing personnel by funding coursework and providing opportunities for continuing education in the area of pediatric dysphagia. As systems hire new SLPs, dysphagia training and experience could be considered as one criterion for employment.
Training. Training expenses will depend on each system's needs. An ongoing commitment to providing adequate training to SLPs as well as to teachers and other professional personnel helps to ensure that staff members have the information needed to safely address dysphagia in the school system. Once a school system has approved and adopted a procedure, it then has the responsibility of ensuring that the procedure adopted is thorough and is followed by all employees involved. In order to achieve this goal on a systemwide basis, there are three types of training that may be necessary: procedural, ongoing staff development on pediatric dysphagia, and cardiopulmonary resuscitation (CPR). The expenses associated with training will depend on the resources within the district and the community.
The first training need required for team members involves the specifics of the approved school system procedure. Each professional will need to know what dysphagia is, what its signs and symptoms are, and what the risks are for a student with dysphagia. Individual roles for team members will need to be defined. Adequate training of school system personnel will enable them to follow the procedure, which could affect the safety of students. SLPs, OTs, school nurses, special education teachers, and paraprofessionals will all need to be trained on the steps of the procedure.
The second training need requirement is for SLPs on the team. In most cases, SLPs will serve as the most knowledgeable professional or the dysphagia case manager. It should be noted that only SLPs with training and experience in dysphagia should serve as case managers (ASHA, 2002). The SLP will need ongoing training in the diagnosis and management of students with dysphagia as well as on the system procedure itself. Many university training programs emphasize adult dysphagia in coursework and offer minimal training in pediatric dysphagia. SLPs in schools may need to increase their dysphagia knowledge to include pediatric dysphagia. Although SLPs have a professional responsibility to improve and maintain their skills, it is also the responsibility of the school system to provide training in areas where their personnel need support (IDEA, 2004). The system may choose to send its SLPs to conferences or to bring in speakers with expertise in the evaluation and management of pediatric dysphagia to ensure that team members have the necessary training to work with students in their schools. Ongoing training is important to keep staff knowledgeable and current in all areas of the diagnosis and treatment of pediatric dysphagia (Homer, 2004).
Finally, school personnel will need CPR training and Heimlich maneuver training, updated on a regular basis, to ensure that the staff who are feeding students with dysphagia are adequately trained to respond in an emergency. Some districts will have trained CPR instructors on staff who conduct the training. Others will need to contract with external personnel to provide this training.
Materials. The management of dysphagia may include the need for materials. Typically, school systems have funds within their budgets for materials to be used by school staff, including SLPs. There may be additional expenses incurred for adaptive/assistive feeding equipment and commonly used therapeutic tools such as suction bowls, nosey cups, infant toothbrushes, chewy tubes, food processors, and protective gloves.
Instrumental evaluations. There will be cases when in order to proceed safely with the student's mealtimes at school, the dysphagia team will need a current videofluoroscopic swallow study (VFSS). The referral is driven by the needs of the school system to evaluate students' swallowing and feeding abilities adequately so that the students will receive the appropriate special services needed to participate successfully in their educational program. In these cases, the school system may need to assume financial responsibility for the VFSS. It is the experience of the Louisiana school system that the majority of these costs are frequently covered by the student's private insurance or Medicaid.
Designing a Plan for Addressing Dysphagia
Once the task force has gathered information, it can use the information to design a plan for how the school system can address the evaluation and management of students with dysphagia. This plan will take into consideration the system's resources and personnel. The plan will assist the task force in answering questions that may arise during the process of getting administrative approval.
The task force should follow the school system's chain of command when it presents its plan to the system administrators. The goal is to convince supervisors that a system-supported procedure would be in the best interest of the school system as well as its employees and students. Some benefits of a system-supported procedure in the schools include the following (Homer, 2003):
In summary, the task force may prepare information that attempts to answer all of the pertinent questions that school system administrators may have regarding the formation of a dysphagia team and procedure. As a result, the task force will be prepared to answer questions that may be presented with well-researched responses. Additional questions presented by the system administrators may require legal advice.
Seeking legal opinion. When presented with the issues surrounding dysphagia, special education supervisors frequently want to know whether school systems are required by IDEA to identify and treat this condition. This remains a legal question that is subject to interpretation by a myriad of school board attorneys (Homer, 2003). In 1997, a Louisiana school system drafted questions for its school board attorney regarding issues surrounding establishing a dysphagia team in the schools. The attorney's responses offered support and guidance in the formation of the team (Homer et al., 2000). School systems may want to seek the advice of the attorney who represents their particular system. It is suggested that the task force draft specific questions for the attorney that reflect the issues and concerns of their system within the legal parameters of the state (Homer et al., 2000). Task force members may assist the attorney by providing him or her with informational materials on dysphagia, its signs and symptoms, and its implications. As with many other professionals who are approached with this issue, it cannot be assumed that attorneys understand dysphagia or its potentially dangerous effect on students. By providing attorneys with information, research completed in the legal arena should better address each system's most pressing issues related to the seriousness of pediatric dysphagia. As you structure your team and procedure, look at things from a legal perspective each step of the way, including documentation, delineation of responsibilities, administrative support, and team decision making (Homer, 2004).
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TYPES OF DYSPHAGIA TEAMS IN THE SCHOOLS |
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TOPABSTRACTADOPTING A SYSTEMWIDE DYSPHAGIA...TYPES OF DYSPHAGIA TEAMS...COMPONENTS OF A DYSPHAGIA...ONE SYSTEM'S EXPERIENCECONCLUSIONAPPENDIX AAPPENDIX BAPPENDIX CAPPENDIX DREFERENCES |
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School-Based Team
The school-based team is perhaps the ideal way for students to receive services for dysphagia. In this team approach, the essential personnel for the interdisciplinary dysphagia team are assigned to the school. The dysphagia-trained SLP addresses dysphagia as well as other speech/language concerns. In addition, the other professionals assigned to the school are also involved with the dysphagia team. Most schools have an SLP, OT, PT, nurse, teacher, principal, paraprofessional, cafeteria manager, and social worker (counselor or mental health provider) who are serving students for other disorders. When dysphagia team personnel are based on the school campus, they are able to provide regular monitoring of students who are being fed by the teachers and paraprofessionals. Team members are available to interact frequently with other school staff as well as with parents/guardians. As part of their speech and language therapy program, students may receive regular therapeutic intervention to improve oral motor skills and to train them to use compensatory strategies. In the event of an emergency, the most knowledgeable dysphagia professional is on campus.
Adopting a school-based team approach requires that a district have a dysphagia-trained SLP for every campus. In many schools and systems, the personnel based at schools may not have the experience or training to work with students with dysphagia. Therefore, they may need to consider other models.
System Core Team
A system core team, consisting of an SLP, OT, and nurse who specialize in dysphagia, travels to various school sites to serve the students with dysphagia. The system team works collaboratively with the school-based personnel (including the teacher, administrator, SLP, OT, and nurse). This team model eliminates the need for many dysphagia-trained SLPs in a school system. Instead, the members of the system team have a larger caseload of students with dysphagia, thereby enabling them to develop more experience and knowledge. Fewer professionals also means that ongoing training and staff development are obtained more easily. The system team can focus on training school staff to follow the swallowing and feeding plan and to report to the team any concerns and changes in the student's feeding skills. Ongoing monitoring by the dysphagia team may be more difficult than when the case managers are school based.
Combination Team
SLPs with training and experience in dysphagia are often interested in working with the students on their caseloads who exhibit dysphagia. In many school systems, a combination of the school-based team and the system core team may be the most efficient use of personnel. When possible, the system uses a school-based team. This decision would be based primarily on the dysphagia-trained SLP. In the schools that are not served by a dysphagia-trained SLP, the students with dysphagia would be the responsibility of the system core team. The benefits of the combination team are the same as the school-based team and the system core team (Homer, 2003).
The school system in Louisiana (Homer et al., 2000) has used the combination team model for the past 10 years. Through the years, the number of dysphagia-trained SLPs in the district has increased significantly. Fifty-nine percent of this school system's SLPs serve as dysphagia case managers. In using the combination model, it is easy to see the benefits and disadvantages of both the school-based model and the system core model. Many SLPs who have dysphagia training in graduate school are pleased to be able to use their knowledge and skills in the school setting.
Other Options
Systems may design other team models that meet their particular needs. For instance, systems that do not have any trained personnel on their staff may need to contract with private SLPs. Other systems may choose to send their personnel for intensive training.
It has been the experience of the Louisiana school system that the primary success or failure of a team is contingent on its personnel, their training, organization, and dedication. All models have within their design the ability to serve students with dysphagia successfully. The important piece in this puzzle is that only adequately trained personnel work on the interdisciplinary dysphagia team (Green & Wills, 2004; Power-deFur, 2000; Wagner, 2001). The end result of all of these teams is that students receive the services they need to ensure their safety when eating and to allow them to function at school.
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COMPONENTS OF A DYSPHAGIA TEAM PROCEDURE |
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TOPABSTRACTADOPTING A SYSTEMWIDE DYSPHAGIA...TYPES OF DYSPHAGIA TEAMS...COMPONENTS OF A DYSPHAGIA...ONE SYSTEM'S EXPERIENCECONCLUSIONAPPENDIX AAPPENDIX BAPPENDIX CAPPENDIX DREFERENCES |
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The components that are necessary to include when designing a dysphagia team should flow easily into what the school system already does as part of its policies and procedures. Table 1 lists the suggested components of an interdisciplinary dysphagia team procedure that will help to ensure that the procedure is comprehensive.
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Assignment of a Dysphagia Case Manager
Once a referral is made, a team member will need to be designated as the person responsible for managing the case. The dysphagia case manager is responsible for (a) making and accepting referrals; (b) conducting the initial clinical evaluation (along with other team members) to determine the presence of dysphagia; (c) working with the team to conduct the individualized educational program (IEP); (d) arranging the VFSS when indicated, including securing physician referrals; (e) working with the nurse to secure diet orders; (f) writing the swallowing and feeding plan and training classroom personnel; (g) monitoring the student's swallowing and feeding plan implementation; (h) providing therapeutic intervention; (i) responding to issues and concerns; and (j) ensuring that the procedure is being followed.
If the school-based or combination model team is used, then at the beginning of the school year, the school system will need a process in place where dysphagia case managers are assigned for every school in the system. In order to achieve this, there should be an administrator who understands dysphagia and the importance of having only trained professionals assigned as case managers. Ideally, this would be done by a coordinator of speech/language services or a speech/language administrator. As referrals are received, the dysphagia case manager should be assigned to the student. In some cases, the manager will be the SLP who is assigned to the school, or there may be a system team that travels to schools. In other cases, it may be necessary to assign the student to an SLP who works at another school and would need to serve the students with dysphagia at a neighboring school. This is typically done when there are not enough dysphagia-trained SLPs in the system and caseloads would need to be adapted. The dysphagia case manager leads the team members through the process.
Communication With Parents/Guardians
Parents/guardians are our most important ally in our efforts to ensure that students are safe at school. It is necessary to involve parents/guardians immediately when a concern about swallowing arises. One of the most important components of a dysphagia team is a system for open and active communication with the parent/guardian. Parents/guardians provide invaluable knowledge about their children regarding feeding habits at home, medical history, cultural considerations, and personality characteristics. Parents/guardians are the experts on their children and, in many instances, have figured out the safest way to feed them. By respecting parents' knowledge, you establish their role on the problem-solving team and often avoid contentious situations. There will always be cases where parents/guardians are uncooperative or make requests that do not seem to be in the students' best interest; however, in the majority of cases, parents/guardians are caring and loving and want the best for their children (Homer, 2004). Handleman (1995) suggested that "asking the parents what they regard as helpful can often serve to validate their perspective and promote successful collaboration" (p. 361). Because parents/caregivers may not be aware of or knowledgeable about dysphagia and its implications, the team may serve as a support and information source. When the atmosphere is one of collaboration and respect, the entire team functions better.
Method for Evaluating the Student
Once the referral process is complete and the parents/guardians have been contacted, the team will need a method for evaluating the student to determine whether he or she needs to be followed by the dysphagia team. According to Sheppard (2001), the assessment and treatment of students with dysphagia in the schools should address the primary physiological and sensory-motor issues as well as the functional consequences of dysphagia. The following issues and consequences should be stated in educationally relevant, functional terms:
IEP
The IEP drives the rest of the procedure. An IEP conference is called immediately once the decision is made that the student has dysphagia. The essential team members who need to attend the IEP are the parent/guardian, teacher, SLP, OT, nurse, and administrator. Other personnel such as the social worker and dietician may be invited as needed. At the IEP conference, important subjects that should be addressed are (a) gathering additional medical history, (b) informing parents/guardians of the findings of the team based on screening and evaluation, (c) discussing and signing the individualized health plan (IHP), (d) discussing the need for and setup of the VFSS or clinical evaluation, (e) obtaining a signed release or medical information form to allow the system to talk to physicians and other medical personnel, and (f) reviewing information gathered in order to write a swallowing and feeding plan. The school system must follow the rules and regulations outlined in the Family Educational Rights and Privacy Act (FERPA) of 1974 and the Health Insurance Portability and Accountability Act (HIPAA) of 1996 before contacting the student's physician.
When the IEP process is completed, the parents/guardians should sign the IEP. The IEP can be an effective tool for communication, planning, implementation, and documentation.
Swallowing and Feeding Plan and Training
Once the IEP-approved plan is in place, a swallowing and feeding plan should be written based on all of the information available at the time. The swallowing and feeding plan (see Appendix C) should provide the teacher and paraprofessionals with the information needed to feed the student at school safely and effectively. It is suggested that the plan include (a) identifying information including the name, location, and phone number of the dysphagia case manager; (b) brief case/medical history; (c) detailed feeding recommendations including positioning, special equipment, diet/food preparation, feeding plan techniques/precautions, and any additional information that may be pertinent; and (d) verification of teacher and paraprofessional training of the swallowing and feeding plan.
Once a swallowing and feeding plan is drawn up, it is necessary to train the teachers, paraprofessionals, and parents on the specifics of the plan. According to Winstock (2005), all staff members involved in preparing the student's food or feeding the student should receive training in the management of eating and drinking difficulties, including first aid to deal with choking. This training is extremely important because it teaches the primary feeders how to feed the student safely. To document that training occurred, teachers and paraprofessionals should verify the training by signing and dating the swallowing and feeding plan. This eliminates the confusion that results when one party claims that it was not informed on how to feed the students. Employees and administrators should keep a record of all training and attendance (Banotai, 2003; Homer, 2003).
The swallowing and feeding plan is the tool that lets all of the personnel know how to feed the student safely and effectively. In addition, the swallowing and feeding plan provides the feeders with a written reference to refer to, which will need to be updated periodically.
IHP and Training
The IHP, part of the IEP, informs teachers of the protocol for addressing health issues and provides specific information on how school personnel should react in a health emergency. Each system will have its own method of informing classroom personnel of a student's health issues. Examples of health issues that may be addressed include food allergies, diabetes, and asthma. According to Lotze (1995), when initiating a feeding program for children with developmental disabilities, it is important for parents and caregivers to be aware of the increased risks of choking and airway obstruction. As a precaution in the event that the student chokes or the airway becomes obstructed while at school, an IHP or emergency plan should be written. The swallowing and feeding plan can be incorporated into the IHP to provide detailed information in the IEP on feeding the student safely. Once the IHP is written, the school nurse will come to the student's school to instruct the teachers and paraprofessionals on what to do if the student is choking. The training should be student specific. Parents/guardians sign the IHP once it is completed, which is typically done at the IEP conference.
Medical Referrals
Working as an interdisciplinary team includes close collaboration with the student's physician. Regular contact with the student's physician by the school team will ensure that the physician is informed of the student's status at school and of the specific and unique concerns that face the school system's team (Wagner, 2001). In cases where a student with dysphagia needs a referral for a VFSS, the district should have in place a system for securing physician referrals. The parents/guardians or the dysphagia case manager may contact the physician to discuss the student's dysphagia issues. Once the orders are received, the dysphagia team may assist in setting up the study. In some cases where the district assumes financial responsibility for the VFSS evaluation, it may be more efficient for the school system to set up the study directly with the hospital, including instructions that the school system will cover the cost of the study that is not covered by private insurance or Medicaid. This facilitates payment if it becomes necessary. Communication with the hospital SLP who will be conducting the swallow study is essential. Hospital SLPs usually speak to the parents/guardians before a swallow study. When the referral is initiated by the school system, it is extremely important that the dysphagia case manager inform the hospital SLP of the reasons the system is making the referral for the swallow study. This communication between the medically based team and the school team is essential to ensure interactive decision making in the area of dysphagia (Arvedson, 2001). When talking solely to the parents/guardians, the hospital SLP often does not get a complete picture of the concerns. The system is responsible for the student's health and safety while at school and may have questions and concerns that parents/guardians do not have at home. It is advised that the dysphagia case manager send written information to the hospital SLP in addition to talking on the phone (see Appendix D). When possible, a member of the school team, preferably the dysphagia case manager, should attend the VFSS. The school-based SLP is aware of the system's issues and concerns and can work with the hospital SLP to ensure that the study addresses all of them. FERPA (1974) and HIPPA (1996) guidelines must be followed whenever a district employee contacts a physician, SLP, or other medical personnel regarding a student in the schools.
It is optimal to have physician referrals for clinical evaluations and diet orders. Whenever possible, the school team wants to use procedures that are already in place within their system. Frequently, physicians give orders for other diets such as diabetic diets and peanut allergies. In the case of dysphagia, it may be necessary to temporarily alter the student's diet for the sake of safety while waiting to receive diet orders from the physician.
Implementation of the Swallowing and Feeding Plan
An interdisciplinary dysphagia team will need to have in place a system for implementing the swallowing and feeding plan. The plan should be implemented immediately following the IEP and training. The dysphagia team members will monitor the student's swallowing and feeding progress to ensure that the classroom staff is following the student's plan safely.
Therapeutic Treatment
Management of students with dysphagia will be individualized and dependent on the level of services that the students require. Some students will need to be monitored on a frequent basis; others may need fewer monitoring checks. Some students will benefit from direct therapy to improve oral motor skills and to work on compensatory strategies. Students who are more physically and/or cognitively involved may require that the case manager eat with them once a week to monitor their progress.
Monitoring of the student presenting with dysphagia has been the most prevalent model of dysphagia intervention in the Louisiana school system (see Table 2). This model is only implemented after the proper assessment and training of personnel has taken place (Homer, Beauxis, & Fish-Finnigan, 2003). Monitoring activity includes (a) educating staff and parents/guardians, (b) observing the staff providing intervention using the swallowing and feeding plan and IHP upon completion of training, (c) modifying any interventions or equipment, (d) documenting the current feeding status and progress of the student, (e) documenting and researching any complications in the feeding progress, (f) observing the student feeding in several settings at school (e.g., cafeteria, snack time in the room), (g) developing a new swallowing and feeding plan as needed, (h) serving as a resource to the staff and parents/guardians regarding feeding issues, and (i) serving as the interventionist as needed. The therapeutic aspect of dysphagia treatment, however, should not be overlooked. Students have benefited from direct dysphagia therapy in the schools (Homer et al., 2003).
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Administrative Management
The school system in Louisiana has a coordinator who is designated to address the administrative issues surrounding dysphagia management in the schools. There is a need for management of the logistical aspects of the dysphagia team. The dysphagia team administrator's responsibilities include tracking students with dysphagia, including new referrals, transfers in and out of the system, and students who have been discharged from school-based dysphagia services. The administrator is in a position to assign case managers, monitor implementation and documentation of the procedure, purchase materials and equipment, and organize training and staff development. In addition, the involvement of an administrator may facilitate the referrals and scheduling of the VFSS evaluations. The complex nature of dysphagia warrants the involvement of an administrator providing support and networking for therapists in the schools as well as serving as a mediator with difficult cases. SLPs on dysphagia teams that travel throughout a school system, without access to an administrator for dysphagia services, may be responsible for performing many administrative organizational and supporting duties.
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ONE SYSTEM'S EXPERIENCE |
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TOPABSTRACTADOPTING A SYSTEMWIDE DYSPHAGIA...TYPES OF DYSPHAGIA TEAMS...COMPONENTS OF A DYSPHAGIA...ONE SYSTEM'S EXPERIENCECONCLUSIONAPPENDIX AAPPENDIX BAPPENDIX CAPPENDIX DREFERENCES |
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Comments on Dysphagia Intervention by School Board Personnel
Fifteen SLPs and two OTs in the Louisiana district responded to a request for observations on intervention by the dysphagia team. According to the SLPs who responded, every student with dysphagia in the system has a dysphagia plan that results in safe feeding at school. There has been an observed increase in the amount and variety of food intake and a decrease in coughing/choking during meals with use of strategies by the dysphagia team. Students appear better nourished, happier, and better able to learn because of improved nutrition. In addition, one SLP noted that when the feeder feels more comfortable and is adequately trained, then the student also picks this up and eats better. An SLP working in an elementary school stated that her student's diet progressed from a puree diet with thickened liquids to chopped soft diet with thin liquids, moving him toward a more normalized diet. Team members also reported the importance of working as a team and the result of increased team collaboration on other issues with the student in addition to dysphagia. It was the consensus of several SLPs and OTs that with proper management of the student's dysphagia, the psychological aspects of feeding were lessened, which resulted in decreased food refusal and the appearance of feeling more secure.
What We Have Learned
It has been 10 years since the Louisiana school system began investigating the establishment of an interdisciplinary dysphagia team. There have been many lessons learned throughout the years. Initially, the dysphagia team adopted the acronym SWAT (SWallowing Action Team) as its name. However, the team was perceived as coming on too strong in its expert approach with parents/guardians of children with dysphagia. The result was that parents/guardians did not feel part of the decision-making process and were resistant to team suggestions. Once the team learned that the parents/guardians are our most important team member, the procedure has gone remarkably smoothly. We are now referred to as the Dysphagia Team, a term that school system employees are familiar with.
Initially, core team members were concerned that teachers and paraprofessionals in the classrooms would not be able to understand the complex issues related to dysphagia and the serious implications of not following the plan. In reality, the teachers and their staff have embraced the team and not only follow the plans, but constantly share with case managers their observations and concerns. They work as active dysphagia team members, supplying essential knowledge of the student and the classroom routine to the case manager.
Throughout the 10 years, the school system has provided staff training yearly. Case managers receive approximately 9 hr of staff development in the system's dysphagia procedure and the diagnosis and treatment of pediatric dysphagia per year. The classroom staff in the early intervention, severe/profound, and mild moderate classes receive basic training on understanding dysphagia and on the procedure primarily from the dysphagia case manager but also as part of their annual staff development. Ongoing training has proven to be effective. Teachers ask thoughtful questions and rely on the expertise of the dysphagia case manager for solutions to their concerns. Dysphagia case managers consult with one another regarding cases and issues of concern. The more experience the team has gained in school-based dysphagia management, the more it has realized that knowledge gains in this area are an ongoing and consistent need.
Students with dysphagia may go long periods of time without apparent swallowing and feeding changes. However, they also can have moments of crisis that pull core team members together to help the student, their parent/guardians, and classroom staff. It is during these more intense times that team members learn the benefits of having a group of professionals with their own areas of expertise. The result has been that members of the dysphagia team recognize each other's contribution. Mutual respect is evident, and team members have expanded their teamwork to other educational areas.
Finally, what began as radical and difficult has evolved into acceptance and routine. Addressing dysphagia in the Louisiana school system is viewed by the SLP staff as part of their job description. It is no longer something extra, but part of what they as SLPs bring to the school environment. SLPs who have recently graduated are no longer surprised to find out that dysphagia is part of their caseload. They come to the system with coursework and practicum in dysphagia and are ready to use their skills.
The past 10 years have shown that there is a need for these services in the schools. Children spend most of their time and in many cases eat most of their meals at school. Public school SLPs have the opportunity to become specialists in swallowing and feeding for students 3 years of age and above. They have met this challenge in the Louisiana system and, as a result, have experienced the result of healthier students at school.
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CONCLUSION |
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TOPABSTRACTADOPTING A SYSTEMWIDE DYSPHAGIA...TYPES OF DYSPHAGIA TEAMS...COMPONENTS OF A DYSPHAGIA...ONE SYSTEM'S EXPERIENCECONCLUSIONAPPENDIX AAPPENDIX BAPPENDIX CAPPENDIX DREFERENCES |
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School systems have within their structure a team of professionals who together can form an interdisciplinary dysphagia team, with each professional contributing his or her own skills. As school systems begin the process of addressing dysphagia, the ultimate goal should be a system-supported procedure that outlines what is done, when it is done, and who is responsible for each task. This provides school system employees and the school system with set procedures that, when followed, guarantee that the system has taken steps to ensure that the student is fed safely at school. In designing a procedure, a system should consult with the trained professionals to be certain that the procedure contains the essential components. This article provided some guidelines for a dysphagia procedure. Finally, the benefits of SLPs using a team approach to managing students with dysphagia may ensure that students are healthier and safer at school. They are better able to participate in their curriculum and in school activities and are reportedly happier. As a school system goes through the process of setting up a program for diagnosing and treating dysphagia, it is recommended that it asks the question, "What is best for the students?" Using this question to guide the decision-making process will make it easier and facilitate arrival at the correct conclusion.
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APPENDIX A |
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TOPABSTRACTADOPTING A SYSTEMWIDE DYSPHAGIA...TYPES OF DYSPHAGIA TEAMS...COMPONENTS OF A DYSPHAGIA...ONE SYSTEM'S EXPERIENCECONCLUSIONAPPENDIX AAPPENDIX BAPPENDIX CAPPENDIX DREFERENCES |
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Who is at risk for dysphagia?
Swallowing disorders occur in all age groups, from newborns to the elderly, and can occur as a result of a variety of congenital abnormalities, structural damage, and neurological disease or disorder. Primarily those at high risk for a swallowing disorder are those who may be identified as:
What is aspiration?
What are the signs and symptoms of dysphagia?
What are the complications of dysphagia?
What are some feeding concerns that parents/caregivers may report?
Sucking and swallowing in coordination Weak suck Breathing disruptions or apnea during feeding Excessive gagging or recurrent coughing during feeding New onset of feeding difficulty Feeding periods longer than 30–40 min Unexplained food refusal Nasal regurgitation Increased drooling Receives nutrition via tube feeding Premature infants intubated or ventilated for more than 12 days |
APPENDIX B |
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TOPABSTRACTADOPTING A SYSTEMWIDE DYSPHAGIA...TYPES OF DYSPHAGIA TEAMS...COMPONENTS OF A DYSPHAGIA...ONE SYSTEM'S EXPERIENCECONCLUSIONAPPENDIX AAPPENDIX BAPPENDIX CAPPENDIX DREFERENCES |
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APPENDIX C |
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TOPABSTRACTADOPTING A SYSTEMWIDE DYSPHAGIA...TYPES OF DYSPHAGIA TEAMS...COMPONENTS OF A DYSPHAGIA...ONE SYSTEM'S EXPERIENCECONCLUSIONAPPENDIX AAPPENDIX BAPPENDIX CAPPENDIX DREFERENCES |
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APPENDIX D |
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TOPABSTRACTADOPTING A SYSTEMWIDE DYSPHAGIA...TYPES OF DYSPHAGIA TEAMS...COMPONENTS OF A DYSPHAGIA...ONE SYSTEM'S EXPERIENCECONCLUSIONAPPENDIX AAPPENDIX BAPPENDIX CAPPENDIX DREFERENCES |
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ACKNOWLEDGMENTS |
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Received June 13, 2006
Accepted June 11, 2007
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REFERENCES |
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TOPABSTRACTADOPTING A SYSTEMWIDE DYSPHAGIA...TYPES OF DYSPHAGIA TEAMS...COMPONENTS OF A DYSPHAGIA...ONE SYSTEM'S EXPERIENCECONCLUSIONAPPENDIX AAPPENDIX BAPPENDIX CAPPENDIX DREFERENCES |
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