Accommodations and Supports for Children with Pediatric Feeding Disorders
Introduction
Pediatric Feeding Disorders (PFD) occur in approximately 25-40% of toddlers and school-aged children and disproportionately affect children with developmental disabilities (Tarbell & Allaire, 2002). Children with feeding disorders are not a homogenous group. Their specific needs range from difficulties eating specific textures of food to more extreme refusals or inability to eat and drink that necessitate tube feeding or other medical interventions (Berlin, Davies, Lobato, & Silverman, 2009). Pediatric Feeding Disorders can deeply impact families, as the disorder constitutes a disruption to one of the most fundamental caregiving tasks; providing nurturance to a child. Feeding disorders may be caused by any number of underlying medical or developmental problems or their etiology may be unknown. Regardless of a child’s medical status or developmental course, inadequate nutrition or hydration may contribute to cognitive deficits that impact learning in school. These deficits include but are certainly not limited to: reduced concentration, low energy levels, poor stamina, difficulties problem-solving, and poor frustration tolerance. Additionally, children who struggle with feeding needs are often at much higher risk of complications from common illnesses, and they may miss significantly more school than their typical peers. As such, children with feeding disorders may be eligible for accommodations and/or special education instruction and related services. Families and educators alike often wonder how best to support children with PFDs. The purpose of this article is to (a) provide an overview of Section 504 Plans and Individualized Education Plans, (b) provide examples of accommodations and supports that may be appropriate for children with feeding disorders, and (c) share resources to support families and caregivers of children with feeding needs.
Multiple Pathways for Accommodations and Supports
Eligible children who attend public schools primarily receive support via Section 504 Plans or Individualized Education Plans (IEPs). Both Section 504 plans and IEPs provide accommodations for children with disabilities. However, Section 504 plans are generally limited to accommodations, and do not include specialized instruction (direct teaching from a licensed or certified special educator). Children who require accommodations and specialized instruction should be referred for a comprehensive evaluation to determine whether they qualify for special education services and are eligible for an IEP. See below for a more detailed description of both Section 504 Plans and Individualized Education Plans (IEPs). A brief description of Individualized Health Plans (IHPs) is also provided.
Section 504 Plans
Section 504 Plans provide specific accommodations to allow access to education in schools that receive federal funds under Section 504 of the Rehabilitation Act of 1973. Eligibility determinations are made by a team that includes educators, parents/guardians, and other qualified/relevant individuals. Children may qualify for a Section 504 plan if they have a “mental or physical impairment” that substantially limits a major life activity, and if they require reasonable accommodations to access the educational program. Team members are required to conduct an evaluation and carefully consider a variety of data sources. Most children with feeding disorders do indeed have an impairment in a major life activity (eating) and thus may qualify for a Section 504 plan. For more information about Section 504 plans, please reference the following Guide For Parents published by the National Association of School Psychologists.
Individualized Education Program (IEPs)
IEPs provide accommodations, supplementary aides, and services including specialized instruction and related services pursuant to the Individuals with Disabilities Education Act. IEPs are educationally-focused plans with relevant educational goals, objectives, and services. Depending on their individual needs, children with feeding disorders may qualify under the classification of Other Health Impairment, or they may qualify under other classifications due to concurrent disabilities. Eligibility and entitlement decisions are again made by a team of qualified individuals including school personnel and parents/guardians. For more information about special education services and IEPs please reference this Guide for Parents published by the National Association of School Psychologists.
Individualized Health Plans and Other Informal Plans
Some children do not qualify for or need an IEP or a Section 504 plan, but they may otherwise have an Individualized Health Plan (IHP) developed with the school nurse or they may have an informal plan with agreed upon supports from school personnel. Often times IHPs are developed concurrently with Section 504 plans or IEPs. If an IHP alone or an informal plan is working for a child, family, and school team, more formalized supports may not be necessary. However, families should know that they can request a formal evaluation at any time to determine whether their child’s needs warrant a more formalized or comprehensive plan.
Examples of Accommodations and Supports
Families and educators often wonder what accommodations and/or services might be necessary for a child with a Feeding Disorder. Again, these determinations are made by teams based on a child’s individual needs. Most schools have not historically considered feeding therapy as a related service. However, school teams can determine that feeding therapy is a necessary component of a child’s Individualized Education Program. If school districts don’t have the expertise internally to provide feeding therapy, they can contract with a qualified feeding expert in the community. School districts may also provide speech and language therapy and occupational therapy as part of an IEP for educationally relevant tasks that may indirectly support a child's feeding needs. For example, occupational therapists may provide fine motor training to support pencil grasp which may also support a child’s ability to hold and use feeding utensils. Similarly, speech and language therapists may help a child strengthen oral motor skills to support speech articulation, and these exercises may indirectly improve a child’s eating/feeding abilities. Many families pursue private feeding therapy for school-aged children, and private therapists are encouraged to directly collaborate with school-based therapists to discuss strategies, accommodations, and/or services that may benefit the child. Below is a non-exhaustive list of accommodations/services that families and school teams may consider when determining appropriate supports for an individual child.
Possible Accommodations/Services for Children with Feeding Disorders Who Eat Orally
Extra time for eating (for children with reduced endurance for self-feeding)
Opportunity to bring special foods from home (for children with restricted diets, food allergies, or need for specific textures/consistencies)
Opportunity to snack during instruction or short breaks from instruction during day for snacking (for children who may not reasonably be able to consume sufficient calories during a designated lunch period)
Familiar adult to provide supervision during eating (for children who are safe to eat at school per medical team but who may be at some risk for aspiration or choking)
Verbal or visual cues to chew/swallow
Verbal or visual cues to help child take appropriate drink/bite-size to prevent choking
Verbal or visual cues to monitor amount of food in mouth (for children who tend to “pack” food in cheeks or put too much food in mouth)
Use of behavioral motivators (for children who need positive encouragement to eat)
Use of specific chairs, utensils/cups/straws or positioners
Use of fidgets or other sensory supports
Lunch bunch group (adult supported peer group) to provide modeling and socialization during meals and snacks
Reduce distractions during mealtimes
Alternative location for mealtimes as requested
Possible Accommodations/Services for Children with Feeding Disorders Who Require Tube Feedings
*Note: Children who require tube feedings at school may also eat orally, in which case any of the above accommodations may apply
Opportunity to administer tube feeds where the child is most comfortable (i.e. nurse’s office, lunch room, or classroom)
Designated support staff (nurse or trained assistant) to administer tube feeds, as needed
Use of specific chairs or positioners during and following tube feeds (for children who need to be in an upright position to manage reflux or other medical issues)
Monitoring for safety during tube feedings
Stoma site management by school nurse, as needed
Emergency plan with school nurse should the tube become dislodged at school
Resources
Pediatric Feeding Disorders can profoundly impact children and families. Both families and educators often need resources to determine how best to support this population of children at home and in schools. Feeding Matters is a national organization whose purpose is to unite families and experts to support children with PFDs. They seek to accelerate identification, ignite research, and promote collaboration care. Feeding Matters maintains an incredible database of articles, videos, books, and other resources for professionals and families. They also offer a one to one coaching program where experienced parents connect with and mentor other parents who are raising a child with feeding needs. For more information about Feeding Matters, please visit their website at www.feedingmatters.org. Families and providers local to the Chicago area can also access a tremendous network of support through the Chicago Feeding Group. The Chicago Feeding Group provides a forum for parents, students, and professionals to connect and learn more about pediatric feeding. Visit www.chicagofeedinggroup.org for more information.
Summary
Pediatric Feeding Disorders are relatively common, particularly among children with special needs. This article provided an overview of various pathways to accommodations and services and included examples of possible accommodations, supports, and resources children might need. Families are encouraged to reach out to educators in their child’s school to discuss their child’s specific areas of need. School psychologists, social workers, counselors, school nurses, speech and language therapists, and occupational therapists are particularly well equipped to advocate for children and families with feeding needs. Additionally, families should also know that they can seek out the support of their child’s private therapists or consult with a special education advocate to assist them in securing necessary services. See below for additional resources.
Additional Resources
American Speech-Language-Hearing Association (ASHA)
National Association of School Psychologists
School Social Work Association of America
American School Counselor Association
The American Occupational Therapy Association, Inc.
National Association for School Nurses
References
Tarbell, M. C. & Allaire, J. H. (2002) Children with feeding tube dependency: Treating the whole child. Infants & Young Children: An Interdisciplinary Journal of Special Care Practices, 15(1): 29-41.
Berlin, K. S., Davies, W. H. Lobato, D. J., & Silverman, A. H. (2009). A biopsychosocial model of normative and problematic pediatric feeding. Children’s Health Care, 38, 263-282.
-Dr. Kimberly Melton Lechner, LCPC, NCC, PEL