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When my daughter was close to entering the school system, I had a lot of fears as to how the school was going to manage her sugar levels.
Since she was diagnosed with Type 1 Diabetes at 15 months old, I started thinking about this transition when she was ready to enter Preschool, between ages 4 and 5.
If you are in the same boat of thinking:
What am was I supposed to do now? My child is in xx grade…
Keep reading so you learn what are the accommodations that you need for your diabetic child.
Do you need an IEP or a 504 plan?
As a parent of a child with a medical condition, such as diabetes, you need to set in place everything in your power to keep your child safe, but that he/she is successful at the same time in school.
For a child with Type 1 Diabetes, you need a 504 Plan for these school accommodations to take place.
An IEP (Individualized Educational Plan), is written for kids who have a severe mental health condition, low IQ, behavioral issues, or struggles severely with their academics.
Diabetes is considered to be a disability due to the child/adolescent needing insulin 24/7, and they require to be under adult supervision in order to prevent severe impairment or death. Most of the kids fall into this category.
What is a 504 Plan?
Here is what I found from the American Diabetes Association (ADA) website:
The term “504 Plan” refers to a plan developed to meet the requirements of a federal law that prohibits discrimination against people with disabilities, Section 504 of the Rehabilitation Act of 1973 (commonly referred to as “Section 504”).
A 504 Plan sets out the actions the school will take to make sure the student with diabetes is medically safe, has the same access to education as other children, and is treated fairly. It is a tool that can be used to make sure that students, parents/guardians, and school staff understand their responsibilities and to minimize misunderstandings.
The purpose of the 504 Plan is to ensure your child’s academic success and access to the learning environment. Since blood sugar levels do affect their learning and concentration, a 504 Plan is a must.
On the ADA website, I found some templates of 504 plans that you can use for the development of your child’s school plan.
Also note, that these are guidelines. You should always refer to your child’s school district and see how they do their own 504 plans, but if they have no idea how to do one, these are good starting places.
There is also the Children with Diabetes website, where parents submit their own redacted 504 plans, and they are categorized by grades, age, and if the child is on multiple injections or on a pump. They are free to download, with no email input.
How Does a 504 Plan Meeting Work?
In order for you to have a 504 Plan for your child, you will need to schedule a meeting with the school counselor, school nurse, and as many of your child’s teachers who can attend.
At this meeting, you should discuss:
- the medical condition that your child has
- this is the time to bring up any other struggles your child may have (other than Diabetes)
- bring any supporting documents such as medical documents from your child’s Endocrinologist with you to the meeting.
As the meeting progresses, the counselor or another school personnel should help you outline the accommodations that may help your child succeed.
Considerations To Have On Your Child’s 504 Plan
If the Diabetes management that you want is not written on the 504 Plan, the school will be unable to act, since they are not legally protected. So make sure to revise the 504 Plan as many times as necessary during the year, and make sure that everything listed there is updated.
The 504 plan is designed to allow your child to still be as independent as possible, but to receive the help/accommodations they need when they need it.
Make sure you have the following on your child’s 504 Plan:
1. Train school staff to treat your child’s Diabetes
You in conjunction with the school will identify the personnel that will be managing your child’s Diabetes. This person needs to:
- know how to test blood sugar levels and interpret the results
- know how to measure and administer insulin, (either by syringe or insulin pump)
- know how to respond to hypoglycemia (low sugar) events; in an event like this, they would need to know how t0 use Glucagon and/or Baqsimi.
2. Location and time for testing
The school needs to provide an appropriate area for daily blood sugar testing. It can be in the nurse’s office or in the same classroom. Wherever your child feels most comfortable. Tests can be done anytime.
If your child uses a Continuous Glucose Monitor (CGM), like Dexcom G6, this will not be needed, unless there is an extreme high (400+ mg/dL or extreme low (below 55mg/dL). You can write on the 504 Plan to test them.
3. Access to restrooms and water
Your child needs to be allowed unrestricted access to the restroom, accessibility to a water bottle and/or water fountain, snacks, and the nurse’s office when he/she is not feeling well.
4. Insulin delivery
The nurse or designated school personnel will supervise daily glucose monitoring and administer insulin via injection or insulin pump.
In the case of school personnel not knowing how to administer insulin and read glucose levels, the school needs to inform the parents about the issue. Training for this personnel will be needed in this case.
5. Blood sugar testing
Having extreme highs and lows can have an effect on your child’s learning, therefore the following needs to be added to the 504 plan:
- Blood sugar should be tested before important tests. Some parents make the child and/or teacher write the current glucose number on the side of the test. So, if the child “fails” the exam, or does not do well, it most likely could be attributed to his/her glucose level during the time of testing. Now, this is not to be abused that every time your child does not do well on a test because they did not study enough, to have your child retake the test. As parents, we need to be honest and teach our child to be honest as well in this scenario
- If your child needs to snack during a test due to a low, the time it takes for their glucose level to be in their normal range, it should be taken into consideration and needs to be added at the end of the test as an extension. If it takes 20 mins for this to be done, then 20 mins need to be added towards the end of the test time.
6. Recognizing low blood sugars
All school staff in charge of your child should be trained on how to recognize these low glucose symptoms:
- saying things that do not make sense
If any of these symptoms are present, the school nurse/school personnel needs to test your child’s glucose levels, and give carbs to place your child in range if they are below 70 mg/dL.
If you are unable to attend a field trip, a designated person will accompany your child on any field trips away from school. This designated person can be the classroom teacher, a teacher’s aide/paraprofessional, or a family member.
8. Parental notifications
The school nurse, or designated school personnel, needs to notify parents when low-treating food/snacks supplies are running low. Come up with a plan on how to provide these low food/snacks back to the school.
If there are insulin pump problems, the school nurse or designated personnel, needs to inform parents as soon as possible. In this scenario, the parent/guardian will need to head over to the school and insert a new infusion site. Most of the school nurses, may not do this. Find out with your child’s school nurse, if they are willing to learn. This will be mostly for little kiddos, once your child hits middle school/high school, he/she can do it themselves, if they know how to.
When the school nurse is going to be absent. They need to inform the parents who will be substituting.
When there is a school lockdown. Some of these lockdowns are a practice in case of a real emergency but either way, parents need to be notified, even for non-diabetic kiddos.
School personnel needs to notify you as soon as possible of all these changes, via phone call, or letters sent to your home.
9. Substitute Teacher/Substitute Nurse
They need to be notified of your child’s diabetes.
Substitute teacher, he/she needs to know who is the person in charge of managing your child’s diabetes. If on a test, the substitute teacher should be notified in the lesson plan of the testing schedule before the test.
Substitute nurse, they will need to go over the doctor’s orders and the 504 plan established. Both need to be very clear on the steps the substitute nurse needs to take in order to manage your child’s Diabetes in case of an emergency and giving insulin for correcting highs and/or covering meals. Remember they do not know your child as the regular nurse does, so a very detailed instruction process will be needed to prevent delays and misunderstandings on the 504 plan and doctor’s orders.
10. Lunch Time
You can request your child to the front of the lunch line to get their lunch and/or milk so that he/she has time to get his/her food started before insulin is administered.
Some parents (myself included) want their child to be treated as a regular child. However, if they start going low, then a plan should be put into place to keep your child safe.
11. Going to the Nurse’s Office
Your child should ALWAYS be accompanied by an adult or a responsible student (when they are in Middle or High School) when going to the nurse’s office if he/she is not feeling well.
Stress about the importance of the dangerousness of having your child walk by himself/herself when he/she has extreme high and/or low blood sugars.
12. Emergency supplies and Lockdowns
Your child needs to have an emergency supplies bag that includes: a glucose meter, syringes, infusion sites, batteries, snacks, and insulin.
If included in the student’s roster, it will ensure that it accompanies your child during fire drills, field trips, and any time he/she leaves the school grounds or if there is a school lockdown.
In case of a school lockdown, additional bags will be needed in different school locations. I recommend school nurse’s office and classroom that your child spends most of his/her time in. They need to accessible during school lockdowns.
If there are extreme stubborn highs, over 300 mg/dL, your child should use his/her blood ketone meter (or urine ketone strips) anytime. Additional insulin needs to be given in order for blood sugar levels to come down.
14. Physical Activity
Make sure that the school personnel takes a look into your child’s CGM or do a finger poke before recess and even Physical Education class (PE).
I know that my daughter tends to go low every time she does some type of any strenuous physical activity.
Tell the teachers and other school personnel to have snacks to raise glucose levels available and accessible for treatment if needed.
A 504 plan is specifically designed for students who are at risk of not succeeding in school due to a disability covered under federal law.
Since your child has Type 1 Diabetes, he/she is covered under this federal law.
You need to advocate for your child to get the necessary accommodations in order for him/her to succeed in school.
At times you might need to educate school personnel in order for your child to get these accommodations. Do not give up, educate them. There is a lot of misinformation on social media/everywhere and this can get confusing.
Be a teacher towards your child’s school. Your child and your child’s school will appreciate it towards the end of the day.
If you think the school nurse needs more education on managing Type 1 Diabetes in children, you can refer them to the Sugar Surfing Training for Nurses website here. Dr. Ponder is a Pediatric Endocrinologist, who has Type 1 Diabetes himself, and he is AMAZING! He has a book called Sugar Surfing and it’s filled with knowledge.