Submitted by deb on Mon, 06/27/2011 – 22:45
Parents of some children with Periodic Paralysis will need to work with the school to achieve a plan which will allow their child to reach their full potential. The information in this article reflects the experiences of children in US schools. We hope it will be helpful to parents, school administrators, teachers, school nurses and physicians as they work together.
There are two formalized ways of working with the school; One is the Individualized Education Plan (IEP) – A detailed description of the educational goals, assessment methods, behavioral management plan, and educational performance of a student requiring special education services. The other is a 504 Plan. 504 plans ensure equal access to education for students with disabilities. To qualify, a child’s disability must adversely affect educational performance and progress, even if the child is achieving good grades.
What do these plans cover?
- IEPs address the need for physical assistance, academic adaptations, specialized instruction, technology and equipment, and related services like occupational, physical and speech therapy. An IEP team must meet at least once a year. Changes cannot be made to the plan without the parents’ OK.
- 504 plans address all the same areas as IEPs, with the exception of specialized instruction. The educational team includes parents, teachers, administrators and people like physiotherapists, speech therapists etc.
Some Questions and Answers
A parent asked: Is placing a child on a 504 plan a bad thing from the school’s point of view? What are the steps to get a 504 in place?
Answer: Schools do not like 504 plans because the special education department (who gets the funding) is not responsible for overseeing 504 plans. The regular teachers and staff are responsible. Some schools may choose to implement an IEP because they get better funding and the responsibility for the student falls on the special ed teacher instead of the regular classroom teacher.
There is no problem with being on an IEP as long as the child is getting their needs met but special education doesn’t like to be responsible for accommodations and modifications that can be met in the regular classroom, especially with a student that doesn’t have cognitive problems. If a student with PP is put on an IEP, they would probably also qualify under OHI (Other Health Impaired) if there are no consistent cognitive problems.
The question is who is responsible for the paperwork, follow-ups, meetings etc? If your student has frequent absences and needs home instruction, or has cognitive problems due to periodic paralysis an IEP is probably better than a 504. Special education teachers are better trained to meet these needs.
If your child only needs allowances for snacks, water (or Klor-Con), standing up to stretch, resting when necessary, etc. these can be handled by a regular classroom teacher so a 504 is fine. A 504 Plan is implemented with a doctor’s diagnosis and request for accommodations or modifications, where implementing an IEP usually requires that the student go through the series of cognitive tests. Unless the child is having weakness most PP students will pass these tests with no trouble.
Don’t let them refuse you due to not passing IEP testing. They may not test for cognitive problems which is fine. But they should be made aware that the child’s cognitive problems may not be apparent unless they are experiencing potassium fluctuation at the time of testing. If your school wants to go with an IEP instead of a 504 it is not a problem as long as the special education teacher goes into the regular classroom to monitor to ensure that the accom./mods are being met. If your student has episodes that last for days and is missing a lot of school, you may want an IEP so you can request home instruction. You should not be paying for tutoring.
There are legal limits on failing students with special needs. Every district has a maximum number of days a student is allowed to be absent before going on the “failure review list”. This is a list of students that are brought before the faculty or chosen committee to determine if they should be retained another year. Students that have missed more than the maximum number of days are included on this list. If the student may be absent more than the maximum amount of days due to their disabling condition, the 504 Plan or IEP should state that the maximum is lifted and failure/passing is determined only on academic accomplishment. This coupled with additional days allowed for assignments and/or length or number of assignments can allow students to pass without meeting the maximum days limit.
The length and number of assignments required for passing should be limited to what is minimally required to show mastery of subject matter. (This is referred to as “Couple Days”.) A doctor’s note stating that the student may miss days or be tardy due to the diagnosed medical condition is sometimes required. A doctor’s excuse should not be required because of waking up paralyzed and getting to school late, and being too weak to get to school should not require a doctor’s visit. Document the date and condition and turn this into the school and doctor periodically to support general doctor’s note. If the doctor doesn’t want to cooperate see if documenting the date and situation is acceptable to the school. It’s important to make sure that the student is responsible and works their hardest when they can, and there’s no perception that the student is taking advantage of the situation, or the Plan will fail.
Questions: Can you explain the legal obligation to provide service that an IEP mandates? Are the requirements (for the school’s compliance) as strict as with a 504 Plan? I have never felt entirely certain that schools are held to the same stringent requirements with a 504 plan as they are with the IEP. This leaves me feeling very vulnerable as it seems compliance is dependent on the teacher’s cooperation from year to year. It is my belief if the school doesn’t fully follow a 504 plan there may be no penalties for them – but an IEP may be more binding.
Answer: 504 Plans are under the ADA Act (Americans with Disabilities Act) where an IEP is under IDEA (Individuals with Disabilities Education Act). If the school refuses to comply with IDEA (IEP) you must go through Due Process before going to court, which takes longer. Complaints under ADA can go straight to court. It is actually easier and faster to get action with a 504 Plan than an IEP. Both are federal laws so they must comply. If schools know that you know your rights you rarely have to go to court. So it is actually easier and faster to get compliance with a 504 Plan than an IEP.
Question: What if I need help getting the school to implement my child’s plan?
Answer: There is a website that you can look up contacts for local dispute resolutions for special needs students in any state of the US. Pull up the website and put in your state. CADRE = Center for Appropriate Dispute Resolution in Special Education www.directionservice.org/CADRE
Guidelines for Parents of Children with Periodic Paralysis.
1. Ask the principal who is in charge of writing and approving 504’s in your district.
2. Ask the child’s doctor to provide a letter which states the child’s diagnosis and need for accommodations. A parent may get the best results by listing the accommodations the child needs for the doctor, and asking that they put it on their letterhead and sign it. This can save time for the doctor and avoid the frustration that occurs when the doctor doesn’t include all the accommodations that your child needs.
3. Some schools will allow the 504 team, administration and parents to determine accommodations. Some schools will require that this be developed with your doctor and provided to the school. Either way, the parent and doctor should develop a general protocol for the school to follow in case of breathing problems, irregular heart rate, extreme weakness or paralysis.
4. Enter first meeting with documentation and confident yet pleasant attitude. Try to develop a team atmosphere with the 504 team. These meetings can be very stressful. Take someone who understands the needs of your child, and can speak up if you need support. If you have information that you want the staff to review bring copies for everyone. Providing enough copies is very important!
5. Meeting time is always limited. Teachers and staff will leave when time is up! Prepare a clear written agenda organized by priority, most important issue first, second most issue second etc. Keep information clear, organized and very concise. Highlight points on the copies beforehand. Also include a photo of your child on the copies, or take a photograph of your child which can be placed on the table to remind participants that this meeting is about a child’s educational needs, not about departmental politics and budgets.
6. Understand that the school has many students and many needs to accommodate but your child deserves accommodations which will allow them to achieve educational goals. Here is a list of suggestions to meet the requirements of the IDEA Act. Check the items that pertain to your student and use them as a guideline for negotiations. If documented by physician *cognitive symptoms* may move student into IEP status.
Length of episodes: Hours: Give ___extra day(s) to complete assignments.
Couple days: Extend maximum days allowed to be absent per district policy.
Abortive Attacks: Home Instruction (taught in your home by district approved teacher). This will usually move you into an IEP status.
Moving between classes: Student who change rooms for classes may need to be dismissed a few minutes early from classes in order to move safely to their next classroom. A classmate, friend or helper may carry books and other materials between classes.
EMERGENCY PRECAUTIONS: If breathing or heart rate is affected call emergency. Make sure student is in a safe position, place in “coma” position to avoid choking on own secretions. Follow protocol provided by doctor and parents.
Areas of Weakness or Stiffness:___________________
Physical Education Guidelines: In PE class a child may push beyond safe capacity in order to keep up with their peers. Teacher should monitor the student for signs of weakness, clumsiness, change in color (may become flushed or ashen) and/or shaking. Student must constantly self-monitor physical activity. Student may stop activity at any time that the student feels necessary. Provide alternate PE assignments for activities that cannot be done safely as outlined below.
Heart: The heart may be affected when potassium fluctuates. If pulse is not steady and consistent follow doctor/parent protocol. If child complains of chest pain and/or shortness of breath follow doctor/parent protocol.
Cognitive: Potassium fluctuations may affect academic function. Some cases of PP are associated with ADD and ADHD, which may become worse when the student is weak, fatigued, overstimulated or hungry. Potassium fluctuation may produce cognitive clouding and/or labile emotions, child may lose focus, be unable to organize or function as normal. The student may withdraw emotionally and physically (i.e. head down on desk) in order to conserve energy stores and avoid emotional displays, such as tears, which are acutely embarrassing.
Chest and Diaphragm Muscles – Chest muscles/diaphragm can become fatigued causing breathing problems. Do not require student to sing if they are weak. Do not require student to do activities that will cause them to breathe heavily. Do not require students to breathe cold air.
Trunk: Trunk muscle fatigue can cause problems sitting upright and walking.
Limit required length of walking distance to ____ feet at a time. Allow students to stop walking when necessary. Do not require students to sit on bleachers or upright for more than __ mins.
Hands: Avoid over use of finger movement. Allow taping for notes, copy of notes or open notes. Do not require holding objects for an extended period of time.
Arms: Avoid overuse of arm muscles. Avoid carrying over ____ lbs. Do not require student to hold arms up above waist high for more than ___ mins. Provide a set of text books at student’s home. Allow student to keep textbook in classroom if not needed for homework. Allow students to visit locker at any time to switch materials and supplies. Sit student in a location where the student can stretch arms when necessary.
Legs: Avoid overuse of leg muscles. Provide classes on one level if an elevator is not available. Sit student in a location where the student can get up and stretch legs when necessary. Do not require students to stand in line for more than ____ mins. Limit required distance or time spent walking to distance ____ or minutes at a time. Allow students to stop walking when necessary.
Jaw and Throat Muscles: Overuse of throat muscles can cause swallowing or speaking problems. Small regular movements but not constant movement is best. Do not require student to talk for over ____ mins at a time. Sit student where the student can stretch jaw without drawing attention to self. Do not require student to sing. Do not require students to breathe cold air.
Eyelids: Eyelids may become weak or paralyzed. Drooping eyelids are not indicative of drug abuse. Drooping eyelids are not indicative of sleep deprivation. If student’s eyelids are drooping, ask student if he is getting weak; it could be a sign that the student needs to follow doctor/parent protocol.
- Hunger: Allow students to keep snacks at hand (in backpack or desk) and to snack if needed to help avert episode. Type of snack depends on the form of PP the child has.
- Dehydration: Students should carry water bottle and be allowed to drink as needed.
- Cold: Avoid chilling: Do not require student to be exposed to cold or wet weather for more than ___ mins.
- Extreme Heat: Avoid overheating, provide shade, water, limit activity in hot and/or humid conditions. Do not require student to be exposed to temperature over ___ degrees for more than ___ mins.
- Exercise: Allow student to signal when they have reached their limit on physical exercise. Watch that student doesn’t push beyond capacity in order to keep up with peers.
- Rest after Exercise: Watch student after exercise or assign a peer buddy to monitor after exercise in case extreme weakness or paralysis occurs. At first sign of weakness or student’s request follow Doctor/Parent Protocol.
- Inactivity: Allow student to sit where they may get up and stretch legs periodically if needed. Some children can ward off attacks caused by immobility by chewing gum. This should be discussed and discreetly allowed.
- Sleep: Sleep is a strong trigger of episodes, so student may awaken with muscle weakness or paralysis. Arrange schedule so 1st period is study hall or a non-academic class (i.e. art, music) so student doesn’t fall behind academically if missed. Do not count the student tardy if the parents notify the school that the student is late due to an episode of PP.
- Lack of sleep: Parents should notify school if student had a lack of sleep the night before so the faculty will know it may be a harder day medically for the student.
- Stress causes adrenaline release which triggers weakness: If the student becomes visibly stressed back off and deal with the situation in a less stressful manner or after the student is sitting or lying in private in a safe location should paralysis occur.
- Medication: Asthma type “puffer” or potassium supplementation are commonly used to abort an episode of paralysis but must be taken immediately upon recognition of first signs of an attack, so provision for these measures should be discussed as arranged with doctor and school.
Provided by: Jacquee Miller – Master’s degrees in Education Educational Intervention Specialist with 12 years experience. Here are some websites on 504 or IEP in the USA:
What is a 504 plan? A parent’s guide to Section 504 in public schools Preparing the school for your child with muscular dystrophy US Government site on Civil Rights of the Disabled Access by Students with Disabilities to Accelerated Programs Government site with text outlining non-discrimination and reasonable accommodation in education