Advocating for Your Child’s Educational Needs
By Margaret Kugler, MS
A child’s burn injury can be an overwhelming experience for the entire family. During the hospital stay, it is likely that you, as a parent or guardian, at times felt a loss of control. Your understanding of the injury and medical procedures may have been minimal and what you needed to learn was extensive. You probably advocated for your child’s care and well-being by sharing with members of the hospital staff the particulars about your child’s personality and personal needs. By informing them of his or her likes, dislikes, food preferences, and preferred comfort techniques, a team could be formed to provide the individualized care that would benefit your child most. The mutual sharing of information and collaboration by the patient–medical staff team enables everyone involved your child’s recovery to work toward a common goal and create a more successful outcome.
School reintegration following hospitalization can be just as overwhelming a process and experience. Before the injury, your child may not have needed any special school services. However, after a lengthy hospital stay, a student may be behind his or her classmates academically. Academic and/or physical accommodations at school may be necessary. Even if the teacher and school staff are familiar with your child, they may not have experience teaching a child with a burn injury. Teachers may have their own fears or misconceptions, which you will have to alleviate. Now it is your turn to be the educator and inform the school staff how they can best support your child. Likewise, you will need information from them on how they plan to assist your child. Sharing knowledge and collaborating with the school staff is your next step in taking charge of developing a plan that will lead to successful outcomes for your child in the academic environment.
You can advocate for your child by forming a “student school team.” With you and your child in the role of team leaders, you should
- Inform the school early on and update them frequently of your child’s prognosis while hospitalized.
- Educate them on burn recovery and your child’s upcoming needs at school.
- Identify which school personnel will be on your team.
- Stress to school staff that this is the same child they knew before even if he or she looks different or does things differently.
- Ask what resources and services the school will be providing.
- Collaborate to form an education plan.
Typically, a burn injury on its own and/or scarring are not considered disabilities that would qualify for special education accommodations. However, many schools and districts approach services differently and may have site-specific services. You and your child, working directly with the school team, can identify anticipated needs and determine the support necessary for his or her success in school.
If your child is returning to the classroom with functional, mobility, or cognitive needs, he or she may require special services, which can include the following:
- Accessible space
- Personal care
- Writing aides
- Nursing/health aide
- Assistive technology
- Therapies—such as speech, or school-based physical/occupational
- Physical education/recess activities
- Testing for special education services to establish or maintain academic goals
Keep in mind that services and plans take time to develop and get in place. However, as your child’s advocate and team leader, you can expedite the process by
- Submitting a written request to the school for evaluation and testing for special education services as soon as you suspect services will be needed.
- Including educators, medical staff, and therapists as part of the team in planning the accommodations for the immediate return to school and long-term needs of the child.
- Scheduling a school re-entry presentation, such as the Phoenix Society’s The Journey Back, to educate his or her classmates and school staff on the emotional and social transition the returning student is facing.
- Getting a detailed doctor’s note, which can be used by the school to develop guidelines, indicating specific physical restrictions and necessary classroom accommodations.
Returning to regular school and activities as soon as possible is encouraged. Attending school and socializing with peers is important for every child’s development and growth. Advocating for a written school plan that outlines services for the immediate return to school will give you the control to modify and adjust for your child’s needs throughout his or her childhood education years. It’s important to recognize that your child’s needs may change when transitioning to a different school or higher education grades.
Advocating for a successful school outcome benefits both you and your child. By taking charge and forming a team, you can help your child succeed in the school environment. Visit www.phoenix-society.org/journeyback for more resources on school re-entry.
Terms That May Be Included in Your Child's Education Plan
Individuals with Disabilities Education Act (IDEA)—All eligible school-aged children and youth with a disability who need special education and related services are entitled to receive a free and appropriate public education (FAPE) in the least restrictive environment.
Free and appropriate public education (FAPE)—FAPE addresses what is appropriate for individual student success. The education should prepare your child for the future—further education, employment, and independent living. (Some private schools may not offer the same services as public schools.)
Least restrictive environment (LRE)—The goal of an LRE is to promote participation with peers in the general education curriculum, if appropriate.
Individualized education plan (IEP)
- An IEP is administered by the special education department of a student’s local school district.
- Special and regular educators must be present to develop the plan.
- Academic education goals may be required to qualify for services.
- The written plan states those services that will be provided, as well as specific goals and desired outcomes.
- The plan is reviewed annually.
- Services that may fall under IEP include
- Academic assistance—one-on-one aide, resource teacher, tutoring (Additional special education testing may be required.)
- Writing assistance—assistive technology or scribe
- Transportation to/from school
- Speech therapy or school-based physical or occupational therapies
- Personal care—toileting, or health care needs (could also be in 504 Plan depending on level of assistance needed)
- If the goals and services needed could be met under regular education services, a 504 plan (see below) will be developed.
Transition plan—This plan is part of the IEP for high school students and addresses post-secondary education and development of career, vocational, and independent living skills.
504 plan (Section 504 of the Rehabilitation Act under the Americans with Disabilities Act)
- Written plan specifies the modifications and accommodations needed so that a student has the opportunity to perform at same level as his or her peers.
- A regular educator must be present to develop the plan.
- Plan must be reviewed annually.
- The need for any of the following may fall under 504:
- Assistance with placement of face mask or brace
- A hat for sun protection or sunblock before outside activities
- Itch medicine/medication during school hours
- Water bottle at desk, extra hydration breaks
- No backpack (light items allowed)
- Two sets of books, one at home and one for each classroom
- Extra time to complete assignments and homework
- Mobility assistance—extra passing time, elevator pass key, ramps
- Accessible classrooms, desks, aisleways for wheelchair or walker use
- Physical education—adaptive or modified; dress down and shower consideration
- Assistance with lunch tray, opening items
Margaret Kugler has an MS in vocational rehabilitation counseling and a PPS (pupil personnel services) credential in school counseling. She is Coordinator of Educational and Vocational Services at Shriners Hospitals for Children–Northern California. Margaret is devoted to helping children transition from the hospital setting to their community by providing them with much-needed information, skills, and resources.