The 504 Plan

by Danielle Shaw
So, you’ve made it through the early years with your baby, and now it’s time for the real fun to begin—school! All parents are nervous when their “baby” starts kindergarten, but when your child has medical needs that you worry about, it can be even harder and more nerve wracking. Here are some tips for items that you may want to have in your child’s educational plan if he or she has sacral agenesis/caudal regression syndrome (SA/CRS). If your child does not have any school-related issues other than medical ones (that is, he or she does not need services such as speech therapy), he or she may qualify for a 504 Plan rather than an IEP (Individualized Education Plan). There are some differences between a 504 Plan and an IEP, but one of the most important is that a 504 Plan does not have goals in it like an IEP does. Instead, 504 Plans cover just a child’s school-based medical needs and accommodations. This process should begin before your child starts kindergarten. You should ideally meet with people such as the principal, guidance counselor, and teacher the spring before your child starts kindergarten. When we began this process when our son was starting kindergarten, the school staff provided us with a Parent Input Sheet that asked us questions about our son’s disability and medical needs in school. This was a good place to start to organize our thoughts. The questions were:

What do you feel is your child’s disabling condition that necessitates that he or she have a 504 Plan?
How does it impact his or her daily life activities?
How does it impact his or her educational program?
What necessary accommodations do you believe your child needs in order to be successful in school?

It is a good idea to answer these questions as thoroughly as you can in developing the 504 Plan. Even if you think something is not something the school staff will be willing to do, just jot it down. It can all be worked out when you meet with them. Some items that you may want to cover in your child’s 504 Plan include:

Bathroom procedures: help with changing Pull-Ups or catheterizing
Latex precautions
Physical therapy and occupational therapy services
Extra copies of books to be kept at home so your child doesn’t have to carry books back and forth
Medications
Procedure for medical emergencies
Use of a seat cushion
Accommodations for gym (such as no contact sports or no activities that put pressure on the neck such as heading balls or somersaults)

After some back and forth with the school staff, we ironed out our son’s 504 Plan. I am providing the plan here as a sample to help in developing your plan. Every child is different, and this is just an example, but it gets you thinking along the lines of what a 504 Plan can include.

SAMPLE 504 PLAN FOR A KINDERGARTEN STUDENT WITH SA/CRS

Reason for Service

Student is transitioning into a school-aged program from preschool. His primary disability is orthopedic impairment. He has a medical diagnosis of caudal regression syndrome/sacral agenesis, which has affected his pelvis, legs, and bladder and bowel function. In addition, Student has a hearing loss in his right ear. He cannot sit pretzel style and uses a cushion when sitting. Student ambulates with a rolling walker or crutches. Student’s kidneys are low in the front of his body. Therefore, his kidneys are unprotected by his ribs and could be damaged if he has a blow to the abdomen. He plays normally with other kids but must avoid contact sports (being too rough, tackling, etc.). Student also has fused vertebrae in his neck, so it he should not do any activities that will put stress on his neck, such as “heading” a ball or doing somersaults. Because the nerves to Student’s bowel and bladder do not function reliably, he is not fully potty trained yet, and the urologist does not foresee continence for student without later surgical intervention.

Latex Precautions

Because of his neural tube disorder and frequent surgeries, Student has a high risk of developing an allergy to latex and natural rubber and must avoid being in the same room with latex gloves, Band-Aids, balls, balloons, erasers, and so on.

Medical Accommodations

Bathroom breaks: Student will have regular bathroom breaks spaced at preset intervals with times to be determined (especially after eating and after physical activity).
He will go to the nurse’s room for assistance.
He will have extra changes of clothes and Pull-Ups kept at school at all times kept in the nurse’s office.
Student will be allowed to take extra bathroom breaks as needed.

School Accommodations

Use of a walker or forearm crutches to ambulate the school environment
Seat cushion provided by parents
Seat cushion when attending performances, assemblies or prolonged periods of time (student chair when needed)
Ongoing written communication between parents and teacher
Preferential seating for hearing: teacher to face Student’s left side when speaking to him or delivering instructions
Wheelchair provided by parents for field trips as needed
Parents will provide written permission for Student to be lifted on and off a bus for any District-provided transportation
Avoid contact sports and any activities that put stress on his neck ex. “heading” balls and doing somersaults.

Transportation

Parents will provide transportation to and from school.

Medications

Ditropan; Sennosides

Procedures for Medical Emergencies

In the event of a building emergency the following steps will be taken regarding the safety of Student.
Teacher 1 will escort Student to safety.
Teacher 2 will escort Teacher 1’s other students to safety with the assistance of other staff in the event of an emergency

Evolution of the Plan

Remember that the 504 Plan should evolve with your child. As our son has grown older, we have modified some parts of the plan, adding some items that we found over the years to be helpful, including accommodations for our son’s short stature and suggestions for his increasing independence. Some of the things we added include:

Addition to bathroom plan: In an effort to increase independence, Student will become aware of the times he is supposed to go to the nurse and will not need to be reminded. Student will be allowed to take extra bathroom breaks as needed. (One year we started off with him wearing a watch with an alarm on it that buzzed on vibrate when he needed to go to the nurse for bathroom help. Another year the teacher taped a sticker on his desk noting the times: “Nurse: After recess and after specials.” These were great reminders for him. As he has gotten older, he has, of course, gotten better with knowing his “nurse times,” and he does not have to be reminded—as much!)
Addition to mobility area: Student will use forearm crutches to ambulate the school environment. He will have a crutch holder (supplied by parents) installed on his desk.
Addition for heavy textbooks yet increasing independence with carrying supplies: Student will be provided a separate set of textbooks (when needed) to be kept at home but will carry his own supplies as much as possible (e.g., a cinch bag for supplies, a backpack lunchbox).
Addition for short stature: Things that are too high to reach should be lowered, including a closet hook to be installed at a lower height.

Last, we added a “Parents’ Vision” for our son, which reads: “Student’s parents’ vision is for Student to be fully included in all aspects of school and life in the community. They envision Student continuing to develop unique ways to accomplish tasks so he can become increasingly more independent and confident in his abilities.” I think this vision is a good, brief first paragraph for the 504 Plan, helping anyone who reads it to see that he is much more than SA/CRS.