just for kids

august 2002

For most children August is the month before school starts. For parents it means rethinking what our children need as they grow older and bigger. For those of us who have children with diabetes, August is the perfect month to set goals and make sure our child will be safe at school. It is the perfect month to make sure shots are up to date, insulin is covering food and exercise, and the 504 Plan and IEP for your child meet your expectations. Last year we shared what you and your child can legally expect from the school and this year we wan to go over the facts again to make sure your child gets the most out of his/her educational experience. The rights of your child with diabetes at school are based on Section 504 of the Rehabilitation Act of 1973, the Americans with Disabilities Act, and the Individuals with Disability Education Act (IDEA). These laws provide protection against discrimination for children with disabilities, including diabetes, in any program or activity receiving federal financial assistance. This includes public schools and day care centers and those private schools and centers that receive federal funds. Some people are confused about the difference between a 504 and an Individualized Educational Plan (IEP). A 504 plan is a medical treatment plan and an IEP is a list of accommodations that will be made by the school to carry out the treatment plan. For example, if the 504 plan says that a child needs to have privacy for blood glucose testing, the IEP might state that the child will have access to a specific place and right to leave class without repercussions. Do note that when you sign a medical and educational plan, it must be complied with by school personnel. They are liable if they don't. Now that it's August, and hopefully you have met to go over a 504 treatment plan and to develop an IEP, it is time for the school nurse or other responsible person to get to work. Although you, as a parent, may not want to camp out at school to make sure the plan is fleshed out, nothing beats good communication and your own time schedule being checked off, so that on the first day of school everything is in place. What should be happening? The nurse should write a Healthcare Plan Checklist that will include: A preschool meeting with parents to go over a health form, emergency plan and a release of information form. Now the school will have the latest of information to protect your child. If any information changes during the year, make sure to call the nurse and update it. You, as the parent, will provide the equipment needed on a daily basis or let the school know if your child will be carrying the blood glucose monitor each day. You will want to bring the proper snacks, medications and treatments for hypoglycemia. The nurse will train the designated staff for emergency intervention. This does not mean that the teacher, bus driver, coach, etc. have the right to read personal and confidential medical files; it means that they can understand what your child's hypoglycemia or hyperglycemia looks like and how to intervene. The nurse will write up a blood glucose and insulin procedure form. This will occur after she observes your child and his/her ability to test for blood glucose levels and administer insulin. The nurse plans for nutritional needs of your child. The nurse outlines how she will maintain consistent communication with you, as a parent, plus the teacher and your child. What should your child's 504 Plan include? Medications and dosages, times etc. You may want to list all medications your child takes and note those that will not be given at school and those that will. Make sure you include details like insulin doses, sliding scales, and how many minutes before eating it is to be injected. You will need to include how much control your child can take over his/her treatment, that is, can he/she decide how much insulin to take. If your child can not do this, a sliding scale or chart or a phone call to you are ideas to cover this problem. Do make sure that one school professional will call you if the school is concerned about your child. For example, years ago I watched as a type 1 preadolescent I was treating went around the lunch room buying and trading desserts which he stashed in his school bag, pockets etc. for his "treats," or which he gobbled down as he made his rounds of the lunch room. He did not see me on my school visit. His behavior deteriorated every afternoon while teachers watched him devour desserts, yet they never said a word. It was only when things reached a crisis level that they wanted to know what to do. Make sure your child's teacher understands the importance of immediately communicating with you about behavior that affects your child's health and school performance. The plan should include blood glucose testing procedures. This should include the where and when. You should know that the school does not have the right to stop your child from testing blood glucose levels in the classroom as long as you can prove that the procedure will not endanger other students. You can make life easier for your child if you promise to dispose of sharps and other materials at home and not at school. The plan will include treatment plans for hypo and hyperglycemia. This is very important because we want our children to be able to concentrate and learn, not have insulin reactions or very high blood glucose levels which impair these processes. The 504 plan will include what precautions need to be taken before physical activity. The law says that your child can not be discriminated against, but you need to help the school out in terms of carbohydrate snacks before and during exercise. Make sure that you share guidelines for safety of exercise with low and high blood glucose levels, and what to do to correct these before going to the gym or out to play a sport or just run around on the play ground. All children need medical assistance sometimes. Let the nurse know what to do when your child gets the flu, becomes dehydrated, etc. Medical phone numbers to be used only when needed should be listed, as should family members' daytime phone numbers. Finally, list snacks, special treats and party foods your child can have. Most children, just as adults, like to feel like part of the group. Being different may not help his/her control, so your good thoughts about these issues are important. For example, if there is a birthday party for a classmate with a big cake with that sugary Crisco icing that they make in supermarkets and bake shops, what can your child eat, or can they eat? Understanding the reasons for behaviors in the classroom that are related to having diabetes. What should be included in the IEP? Remember, this is how the school will accommodate the 504 plan When those of us with diabetes have hyper or hypoglycemia, we often do not concentrate very well. The IEP should include the right to have information repeated without being penalized. Your child should be given the right to make up work and tests if they had a severe hyper or hypoglycemic reaction during an exam. Now for a word from the shrink. We all have these things happen to us, but if it becomes a process and not an incident, do get to the bottom of the problem and work it out with your child and the school. We all have read the studies that say that some children learn to use their insulin to lose weight so what will stop some children from using it to get out of situations that they find distasteful? The IEP should include some flexibility as related to absences. Your child may need to see a physician more often that a child without diabetes. In some schools, many absences impede children from getting awards etc., and your child should be eligible for these awards. Your child should have the right to leave the class to go to the rest room as needed or get water as needed. Your child should be given time for taking his/her medication, checking his/her blood glucose level, and eating snacks or completing meals. Interventions to help your child cope with feelings that have to do with diabetes should be outlined. What are we trying to do with these plans? The answer is simple. We are trying to provide a supportive place where our children can learn. We want to reduce absences from school so that our children get into the habit of going to school and love to learn. The school will foster learning while keeping disruptions at a minimum. We all remember how learning stopped when something unusual happened in the class. The school will be prepared for an emergency and hopefully be able to intervene before it becomes a full blown one needing outside emergency personnel. Your child will have the right to participate in all activities he/she wants to including sports activities. Finally, your child will be helped to have a positive self image and high self esteem. Do read the school's diabetes management guide. It will have generic information about diabetes that may not be up to date. You can be a very good educator as can your physician or health care team. We want those who help our children to be aware, educated and never afraid of helping. Many people have problems with needles, blood etc. Make sure you meet with the nurse or coordinator to find out if the people around your child will be comfortable. We don't want have a child helped by someone who makes the experience very scary or negative. I guess, what we want you to know is that you and your child have many rights and you need to make sure they are in place. We live in an "expert" world where we defer to others, but you know your child and if things aren't right, don't wait until they become untenable. Your child and family will suffer and it takes time to undo that type of stress and anxiety. You are the expert on your child and how well he/she deals with diabetes. Our final advice is simple. August is a good time to visit all of the health care professionals you usually see during the year. This would include the dentist too. Read the What's Hot article this month and you'll see why. If your physician suggests, you may want to see an ophthalmologist also to make sure your child's vision is OK. All immunizations need to be given and noted for school records and August is a good time to get these over with. Get out the calendar and make the appointments, and why not do it for you too? Good health. BSP