TO SCHOOL
Even if your daughter is one of the more fortunate ones who have only a small amount of pain from Endo, you will find that there are times when she is having a few bad days and can't go to school. Your daughter may be on the opposite end of the spectrum who has such severe pain along with other symptoms, that she is almost incapacitated and unable to attend school for months or even years at a time. Chances are your own daughter will fall somewhere between these two extremes.
While your first priority, of course, will be your daughter's health - both physical and mental - a secondary concern will be the old question "What are we going to do about her school and homework?" Therein lies the potential for another major battle between you and the educational system.
Some schools will be extremely understanding and will work diligently with you to make sure your child gets every possible intervention available to help her achieve. Then there are others schools whose attitudes and rigid policies seem set in stone. Even though the child has been diagnosed with an incurable disease, they want to apply all standard grading and discipline policies to the student. This can mean detention or possible suspension for missing too many days of school, zeros on missed tests and homework, and the inability for your child to get caught up on missed lessons.
But parents of children in public schools do have an option. . .the Medical 504 plan. Following is a very condensed version of what the Medical 504 plan is about:
This website is NOT intended to offer any legal advice
concerning Medical 504 plans. The intent is to make you
aware of this potential option for a child with a medical
problem.
The Individuals With Disabilities Education Act (IDEA) was passed in 1975 and provides for a free appropriate public education (FAPE) for each eligible student. Section 504 of the Rehabilitation Act of 1973 is a civil rights statute that was enacted two years prior to the federal special education legislation. Section 504 guarantees access to, and prohibits discrimination against, individuals with disabilities in any program or activity that receives or benefits from federal financial assistance. Though the federal legislation does not provide financial assistance for complying with Section 504, school systems as well as any other agency receiving federal funds must adhere to this civil rights law. Failing to do so could result in the loss of all federal funds.
The explanation above is actually referring to two different programs. The first one is IDEA. To be eligible for special education under this program, a student must have a disability in one of the 13 pre-determined categories specifically listed in the IDEA legislation which can adversely impact educational performance.
The second program mentioned is Section 504 and this more closely aligns with students who have Endo. Section 504 does not specifically list the names or categories of disabilities. To qualify under Section 504 an individual must have a physical or mental impairment which substantially limits a major life function such as learning, be regarded to have a disability or have a history of such a disability.
Section 504 has long been overlooked within the public school systems. In Connecticut, for example, Section 504 has only been routinely used in the past seven or eight years. The result of this usage, has been more accurate identification, under Section 504, of children who have health problems - those with physical but not mental impairments - and those who have very mild disabilities who do not meet the eligibility requirements under IDEA (a very specific list of disabilities) but who need assistance to access school programs and prevent discrimination. The fact that a child has a disability does not automatically entitle the student to special education and related services under IDEA, however, the child should be protected under Section 504 from discrimination if that criteria is met. A documented disability which adversely affects educational performance entitles students to specially designed instruction to meet the unique needs of the child.
WHY IS A 504 PLAN SO IMPORTANT?
If your daughter's school is cooperative and understanding and willing to work with you and your child to make up work and lost lessons, then maybe you don't need this. That is the situation I was in when my daughter was in middle school. Everyone including the principal, guidance counselor, nurse and the teachers bent over backwards to make sure that her needs were met. From the beginning, their attitude was for us as a family to get her medical condition under control then we would work together to get her educational needs met. And because of their attitude, it worked perfectly. But once she started high school, I knew that the cultural environment would not be as close-knit as we'd had before and I wanted the security of having a documented and implemented plan in place to guarantee her legal rights. That is why I opted for the protection of the Medical 504 plan.
HOW DO I BEGIN TO IMPLEMENT A 504 PLAN?
The procedures may vary somewhat for each state and for each school district. I'd recommend doing a little reseach into your state's special education program. You can do this by checking the internet or by calling your state Education Department and requesting information about Section 504.
Your first call should probably be to your child's guidance counselor where you explain your daughter's medical condition, how it has impacted her school performance (days absence, missed assignments, lower grades, etc), and request that a meeting be scheduled to discuss implementing a 504 plan. Once a meeting has been arranged, you should ask your child's doctor to write a letter explaining that he or she is treating your child. The letter should detail the medical history, including surgical findings, and current treatments and medications. If you have relayed information to the doctor about how the Endo has impacted her school performance and attendance, he should reference that in the letter as well. The letter should also state that future school attendance and performance could be impacted by the effects of the endometeriosis.
WHO WILL BE AT THE MEETING?
Again this could differ among schools, but for us, the meeting included my daughter, both parents, the school nurse, her Vice Principal, her guidance counselor and one of her teachers.
WHAT TO EXPECT DURING THE MEETING?
Some of these meetings are very simple and routine while others may take on a more adversarial feel. Because there is no federal money provided to the schools for Medical 504 implementations, some schools are still reluctant to implement this plan. If that is the case, then you will have to fight for your child's rights. This could happen in many ways, including filing a formal appeal. This is why researching your own state's special education laws and statutes are so important. Remember: Knowledge is Power.
My personal experience was very positive. The guidance counselor from the middle school had already taken it upon herself to call and personally visit the guidance department at the high school to talk about my daughter's medical situation. In addition, the nurse at her middle school had already contacted the high school nurse to discuss her ongoing medical needs. In essence, my initial 504 meeting was just a formality to discuss what intervention steps were needed and sign the legal documents.
Because I did not know exactly how the meeting would go, I was prepared. First I had the letter from the Pediatric Gynecologist who is treating my daughter. Then, I had the brochures from the Endometriosis Association explaining what Endo is and how it can impact a woman's daily life. Since my daughter was a new student at the high school where no one knew the real girl and also because most people don't have a clue what endometriosis is, I created an informational packet which began with basic details about my daughter. This included her academic performance, her school activities, extra-curricular activities, and a glimpse into her personality.
From there, I wrote more information about Endo which I had extracted from the National Institute of Child Health and Development website. I had a section entitled "Teenagers With Endo Speak Out". These excerpts came from the website called TeensWithEndo (see Resource section). I wanted the attendees to get a true understanding of what this disease can do to a teen. I also put a section into my packet entitled "Moms Speak Out About Their Daughters" and those excerpts were taken from the DaughtersWithEndo website (again, see Resource section).
The packet also included information about my daughter and her Endo. Using her own words, I wrote down how she feels when she's in school and having lots of pain. We documented what happens when she is sent home from school because the pain is too intense. From there, I wrote about the potential problems I saw for her at the new school because of the Endo.
I think everyone in attendance was impressed with the details I had provided. It certainly educated them more about Endo and let them see my daughter as a real person and not just another name on a piece of paper.
WHAT KINDS OF HELP CAN A 504 PROVIDE?
The needs of each girl will be unique depending on the severity of her Endo symptoms, the size and layout of the school, and the attitudes of the staff. Here are just a few of the types of interventions that might be included in the plan.
***A second set of text books that can be kept at home so she doesn't have to carry so much weight in her backpack.
***Specify a reasonable amount of time for her to make up and turn in work that was missed due to absences. This can also apply to homework if she was unable to do it because of the pain even though she was not absent from school.
***Waive the need for her to get a hall pass to go to the nurse between classes.
***She's not penalized with detentions or other disciplanary actions if she is late to class because she's in pain. (Here is where the size and layout of the school can come into play. My daughter is at a large school with 3 stories and sometimes just getting to class can be a slow process.)
***Her grades cannot be reduced if she doesn't "actively participate" in class discussions. Sometimes they may not feel bad enough to go to the nurse or go home, but they just don't feel up to talking in class. In many classes, a percentage of the grade is derived from this class discussion.
***Document the need for special tutors, either at school or home, to help your daughter catch up on lessons, homework and labs if she has missed an unusually large number of consecutive schools days. The timing and location for the tutoring should be written in the report.
***Document the availability and timing of a home bound tutor if there is a chance that your child may be unable to attend school at all for long periods of time. Even if your child does not seem to need this type of assistance at this time, you should at least mention it as an option that could be implemented if her needs changed in the future.
The above items are certainly not an all inclusive list but hopefully it will provide ideas about the types of interventions that are there for your child. More ideas may even be suggested by the staff members who are in attendance at the 504 planning meeting. For example, the Vice Principal suggested we allow my daughter to use the elevator at school which is for the exclusive use of disabled students because of the 3 storied school. For several reasons, we decided that was not needed for her but I was appreciative that they brought it up.
There is a lot of information on the internet about the Medical 504 plans and you should research and become as familiar as possible with all the aspects of this before asking for your meeting. As Endo parents have learned, knowledge is power!
WHAT ABOUT COLLEGE?
The idea of your daughter going off to college and living on her own without you there to help with the medical problems can be cause for concern. Yet this is the exact normal life we all want for our daughters.
Having a daughter with Endo just adds a few additional steps into your search for the right college. Again, the severity of her condition will be one of the key elements when looking for schools. Several things to keep in mind are the size of the campus, access to medical care on and off campus, and the distance between your home and the campus should you need to get there for any emergency.
But perhaps one of the most important things to check out is the type of disability programs the college has in place. These can vary greatly among schools. Don't be misled into thinking that a smaller school will automatically have a better disability program for that is not necessarily true. If your daughter is thinking about a particular school, call them and discuss your daughter's condition and find out about the programs available to her. One of the most important things is for her to know that she has a solid support system available to her if needed. As I've said before, knowledge is power. You and the school should discuss these programs with your daughter and let her know that her medical information is confidentil. The school will only share her unique needs with those staff members who need to know.
Also, once she has decided upon a school, ask your current doctor for recommendations of a doctor who practices in or near the same city as the college. You may want to talk to the new doctor by phone or schedule a meeting where he can review the history of your daughter's condition. Also, you should ask your regular doctor if a copy of her medical records should be sent to the new doctor near the college. By doing this, both you and your daughter will be assured that an understanding and knowledgable physician is close by should the need ever arise.
