• Education & Congenital Heart Disease: Strategies for Success in School

     
     
     
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    Like all parents, you may feel both anxiety and excitement when it comes time to enroll your child in school. For parents of children with congenital heart disease, these feelings may be more pronounced because of your child’s health issues. Likewise, if you are an adult who was born with congenital heart disease, you may have questions about how smoothly your transition to college or career training may go. Regardless of age, support is available to help people with congenital heart disease achieve the best possible education. 

    Read on for more information about how you can obtain help in educational settings, if you need it.

    Preschool, Elementary School, and Middle School

    The goal in treating children with congenital heart disease is that they will lead a typical life, which usually includes school experience. Many schools will be able to direct you to staff who can assist in meeting your child’s medical needs during the school day and in determining what paperwork needs to be completed. Your child’s pediatric cardiologist, pediatrician, nurses, and social workers can also assist you in finding out what you need to know about supporting your child’s school needs. Read on for tips that can help ensure your child’s school experience is as seamless as possible.

    Time management. Time management skills can go a long way in helping your child achieve the same educational experience as his or her peers. Overall, a goal of treating congenital heart disease is that your child have the same school attendance as a child without heart disease. Toward this goal, parents can try to group office visits to multiple providers on the same day to limit school absences.

    Post-procedure activity restrictions. A common concern among parents is acceptable activity levels for their child at school immediately following a surgical or interventional procedure. Any restrictions on your child’s activity level will vary based on the surgery or intervention that was performed. Before leaving the hospital, you can discuss school-related concerns such as the following with your child’s medical provider:

    • When can my child return to school?
    • When can my child participate in gym class?
    • Is it safe for my child to resume playing sports? If so, when?
    • Are there activities that my child should not participate in – and for how long?
    • When is it okay for my child to resume a swim program (or other activities that might expose incisions to water)?

    Before your child returns to school, be sure to contact the school to find out who you need to speak with and what forms you may need to complete. These important steps are to make sure teachers and staff are aware of your child’s restrictions and know how to help to keep him or her safe.

    Preparing medical information sheets. Your child’s school likely maintains health records and will send out a yearly medical information sheet. These sheets give you the opportunity to update the school about any medications your child is taking or procedures he or she has undergone. Be sure to give accurate, detailed information about dosage and frequency requirements for any medications to be administered by a school nurse. In addition, please share with the school nurse any tips or “tricks” you do at home in order to administer the medication.

    Keeping good medical records at home will make it much easier for you to fill out school forms each year. You can request copies of your child’s medical records from your hospital or any treating physicians’ offices. You may be charged a small fee for copying and mailing the records. Mended Little Hearts – an organization devoted to helping families of children with congenital heart defects – has a form that can help you organize information about your child’s providers, medications, and procedures in one place: the MLH Path Pack.

    Developing an emergency plan. Your child will spend most of the day in school, so it is important that school staff members have clear instructions on what do in case your child has a medical emergency. Create an emergency plan with the school administration. This plan should include who to call and what immediate measures the school can take in case of an emergency.

    Staff training in use of automated external defibrillators (AEDs) and cardiopulmonary resuscitation (CPR). AEDs are portable devices that can determine if the electrical activity of the heart is abnormal and can reset it to a normal rhythm using a quick electrical shock. When enrolling your child in school, find out if AEDs are available on site and where they are located. Ask what the school policies are for their use and how the staff are trained to use them. Basic CPR can help keep a person alive until medical help arrives. Anyone can receive training on how to do CPR effectively. Become familiar with your school’s policies for CPR training for their staff. If your child has special needs relating to a heart condition, make sure that appropriate school staff are aware of them as well.

    School nurse administration of medications. If your child must have medications administered during the school day, you can arrange to have a school nurse do so. You will be asked to fill out a consent form that lists dosage information for each medication. This form will need to be signed by the prescribing physician, and you will be asked to provide consent in order to allow the school nurse and prescribing physician to share the information. This is a measure to ensure the safe administration of medication and to be prepared for potential side effects or medical emergencies that may arise.

    504 Plan. This refers to Section 504 of the Rehabilitation Act of 1973, which is designed to protect the rights of individuals with disabilities. In schools, it protects the right to equal access to education in programs that receive federal financial assistance. A 504 Plan outlines items such as the types of medical training school staff may need have to support the needs of the student, what procedures should be followed in the event of a medical emergency, whether the student will be self-administering medication, what kinds of physical activity limitations may be in place for the child, and the dietary and other types of accommodations that will enable equal access to education.

    Individualized education program (IEP). Some children with congenital heart disease will also have cognitive disabilities. If your child is enrolled in a school that receives federal funds, he or she may be eligible for an Individualized Education Program (IEP). An IEP is a structured educational plan that determines educational goals for a student over the course of the school year and also provides information pertaining to support services that will be provided in the school for that child. IEPs are mandated in public schools by the Individuals with Disabilities Education Act (IDEA). Students who are assessed as eligible for special education services are required to have an IEP.

    Identifying neurodevelopment issues. Researchers are becoming increasingly aware of neurodevelopment issues in children with congenital heart disease. These neurodevelopment issues consist of developmental disabilities and delays in the cognitive functions of the brain and in the brain’s relationship with emotion, behavior, and motor skills. If you suspect that your child has neurodevelopmental issues, a developmental pediatrician can evaluate your child. Mended Little Hearts, a nonprofit organization devoted to supporting children with congenital heart disease and their families, has a helpful webinar on this topic.

    Managing attention deficit/hyperactivity disorder (ADHD). Although further research is required, it appears that ADHD may be more common among children who have congenital heart disease. While the stimulant medication used to treat ADHD is not recommended for some types of congenital heart disease, it is not contraindicated in all cases. If your child requires stimulant medication, please discuss the benefits and risks of ADHD medication with his or her physician.

    Emotional support for your child. In middle school, it is normal for kids to be concerned about being “different” compared to others. These differences are oftentimes minor, such as clothing or hairstyles. Certainly, medical issues such as congenital heart disease can create even more anxiety. Familiarizing yourself with signs of depression and other mental health issues can help you identify a problem early. Psychological counseling can help your child deal with these issues and others, as necessary.

    High School

    Most of the considerations for making sure your adolescent with congenital heart disease receives the necessary support during the school day are similar to the earlier years of elementary and middle school. However, your child may be ready to assume more responsibility as a teenager. When possible, allowing your teenager to take greater responsibility for his or her health (with proper guidance) is an opportunity to prepare your child for adulthood.

    If assistance is needed to determine the necessary steps required to take in ensuring your teenager’s needs are met at school, there is help available to you. Many schools will be able to direct you to staff who can assist you in meeting your child’s medical needs during the school day. Your child’s pediatric cardiologist, pediatrician, nurses, and social workers can also assist in determining the requirements for supporting your child’s needs at school. The suggestions below can help your adolescent maximize his or her school experience.

    Time management. An important part of making sure your child has a school experience comparable to his or her peers is reducing absences from school. With prior planning, this will not be a significant problem for most adolescents with heart disease. When scheduling office visits for your teenager, try to visit multiple providers on the same day to limit absences from school.

    Post-procedure activity restrictions. A common concern among parents is acceptable activity levels for their child at school immediately following a surgical or interventional procedure. Any restrictions on your child’s activity level will vary based on the particular surgery or procedure that was performed. Before leaving the hospital after your child’s procedure, you can discuss school-related concerns such as the following:

    • When can my child return to school?
    • When can my child participate in gym class?
    • Is it safe for my child to resume playing sports? If so, when?
    • Are there activities that my child should not participate in? If so, for how long should he/she refrain?
    • When is it okay for my child to resume a swim program (or other activities that might expose incisions to water)?

    Before your child returns to school, be sure to contact the school to find out who you need to speak with and what forms you need to complete. These important actions are to make sure teachers and staff are aware of your child’s restrictions.

    Preparing medical information sheets. Your child’s school likely maintains health records and will send out a yearly medical information sheet. These sheets give you the opportunity to update the school about any medications your teenager is taking or procedures he or she has undergone.

    Keeping good medical records at home will make it much easier for you to fill out school forms each year. You can request copies of your child’s medical records from your hospital or any treating physicians’ offices. You may be charged a small fee for copying and mailing the records. Mended Little Hearts – an organization devoted to helping families of children with congenital heart defects – has a form that can help you organize information about your child’s providers, medications, and procedures in one place: the MLH Path Pack. Not all categories of the form apply to teenagers, but it can be helpful overall.

    Developing an emergency plan. Your child will spend most of the day in school, so it is important that school staff members have clear instructions on what do in case your child has a medical emergency. Create an emergency plan with the school administration. This plan should include who to call and what immediate measures the school can take in case of an emergency.

    Staff training in use of automated external defibrillators (AEDs) and cardiopulmonary resuscitation (CPR). AEDs are portable devices that can determine if the electrical activity of the heart is abnormal and can reset it to a normal rhythm using a quick electrical shock. When enrolling your child in school, find out if AEDs are available on site and where they are located. Ask what the school policies are for their use and how the staff are trained to use them. Basic CPR can help keep a person alive until medical help arrives. Anyone can receive training on how to do CPR effectively. Become familiar with your school’s policies for CPR training for their staff. If your child has special needs relating to a heart condition, make sure that appropriate school staff are aware of them as well.

    Student self-administration of medications. Medication administration is an important area where your adolescent may be able to assume some responsibility. If feasible, work with your child’s medical providers to teach your child to self-administer medication. If your teenager learns this skill now, he or she will be better prepared for the transition to adulthood. Contact your child’s school to find out its rules governing student self-administration of medication and to request any parental consent forms that may be required.

    If, however, your child cannot—or is not permitted to—self-administer medications during the school day, you can arrange to have a school nurse do so. You will be asked to fill out a consent form that lists dosage information for each medication. This form will need to be signed by the prescribing physician, and you will be asked to provide consent to allow the school nurse and prescribing physician to share information. This is an important safety measure to ensure the proper administration of medication and to be prepared for any side effects or medical emergencies that may arise.

    504 Plan. This refers to Section 504 of the Rehabilitation Act of 1973, which is designed to protect the rights of individuals with disabilities. In schools, it protects the right to equal access to education in programs that receive federal financial assistance. A 504 Plan outlines items such as the types of medical training school staff may need have to support the needs of the student, what procedures should be followed in the event of a medical emergency, whether the student will be self-administering medication, what kinds of physical activity limitations may be in place for the child, and the dietary and other types of accommodations that will enable equal access to education.

    Individualized education program (IEP). Some children with congenital heart disease will also have cognitive disabilities. If your child is enrolled in a school that receives federal funds, he or she may be eligible for an Individualized Education Program (IEP). An IEP is a structured educational plan that determines educational goals for a student over the course of the school year and also lists support services that will be provided within the school for that child. IEPs are mandated in public schools by the Individuals with Disabilities Act (IDEA). Students who are assessed as eligible for special education services are required to have an IEP.

    Identifying neurodevelopment issues. Researchers are becoming increasingly aware of neurodevelopment issues in children with congenital heart disease. These neurodevelopment issues consist of developmental disabilities and delays in the cognitive functions of the brain and in the brain’s relationship with emotion, behavior, and motor skills. If you suspect that your child has neurodevelopment issues, a developmental pediatrician can evaluate your child. Mended Little Hearts, a nonprofit organization devoted to supporting children with congenital heart disease and their families, has a helpful webinar on this topic.

    Managing attention deficit/hyperactivity disorder (ADHD). Although further research is required, it appears that ADHD may be more common among children who have congenital heart disease. While the stimulant medication used to treat ADHD is not recommended for some types of congenital heart disease, it is not contraindicated in all cases. If your child requires stimulant medication, please discuss the benefits and risks of ADHD medication with his or her physician.

    Emotional support for your child. In high school, it is normal for kids to be concerned about being “different” compared to others. These differences are oftentimes minor, such as clothing or hairstyles. Certainly, medical issues such as congenital heart disease can create even more anxiety. Familiarizing yourself with signs of depression and other mental health issues can help you identify a problem early. Psychological counseling can help your child deal with these issues and others, as necessary.

    College and Career Training

    The need for support services for students with disabilities related to congenital heart disease doesn’t end at childhood. When exploring possible college, university, or vocational schooling programs, you can contact that educational institution’s ADA (Americans with Disabilities Act) or disabilities services office or coordinator, if needed. By law, institutions must provide reasonable accommodations for qualified students. (The rules are slightly different for institutions that receive federal funds versus those that do not, but all are required to provide equal access to public accommodations.) You will be asked to submit documentation of your disability to the office or coordinator for review.

    Questions to Ask Your Doctor (or Your Child’s Doctor) and the School About Education

    • What staff at the educational institution are available to assist me with questions related to my child’s (or my) medical condition?
    • What other professionals may be of benefit to me or my child (health insurance/financial counselors, social workers, mental health counselors, career counselors)?
    • What do I need to know about accessing specialized educational services for my child or myself?
    • Are there school-related activities that my child (or I) should refrain from participating in?
    • What do I need to know about administration of medications at school?
    • Is there someone at my child’s school with specialized medical training?
    • Which and how many staff members are trained in CPR (cardiopulmonary resuscitation)?
    • Is my child’s school equipped with AEDs (automated external defibrillators)?
    • What kind of emergency plan for my child should I make with the school?