Cyclic Vomitting Syndrome Association

Getting Though School with CVS

IEPs

Federal Statute and Regulations

The Individuals with Disabilities Education Act (P.L. 101-476).
IDEA is a federal law that guarantees a free and appropriate public education for every child with a disability. This means that if you enroll your child in public school, his/her education should be at no cost to you and should be appropriate for his/her age, ability and developmental level. IDEA is an amended version of the Education for All Handicapped Children Act (P.L. 94-142), passed in 1975. In 1997, IDEA was reauthorized (P.L. 105-17), further defining children's rights to educational services and strengthening the role of parents in the educational (These regulations apply to students of all ages pre-school, primary and secondary education).
A Guide to the Individualized Education Program

The Laws in Your State

It is a federal law that each child deserves and will receive an education. However, there are variations on how this is accomplished in each state. Your local school system can provide you with your states rules and regulations. Your states department of education, an advocacy group or even your local library will have this information for you as well.
National Dissemination Center for Children with Disabilities NICHCY Guide to State Resources

Don’t Try to Adhere too Strictly to the Rules

Special Education regulations contain many detailed requirements: deadlines, notification, and consent requirements, rules on who should attend meetings, who should evaluate, etc. Keep in mind that following each rule to the letter is far less important in the end than serving the educational needs of your student. Be ready to give your school reasonable leeway on procedural matters while still pressing firmly and steadily on quality programs and services. (Remember, you can be reasonable about postponements and delays while making sure that meetings, evaluations and other needed steps still occur early enough in the school year to be underway for your student before he/she falls too far behind.)

Getting Tested

Determining Placement

Determining the most appropriate placement for your child is a two-step process:

1. Determine your child's level of functioning and associated needs by requesting an evaluation or re-evaluation through the school or an independent professional(s). This evaluation should include specific recommendations for supports, educational services and levels of treatments.
2. In collaboration with your child's prospective teacher(s), service providers and school administrator; develop a well-defined and thorough IEP. Discuss the options for placement that meet the needs of your child. How does the school currently provide services for children with disabilities? Are there programs currently in place that can be modified to meet my child's needs? Using this information, you and the school together can determine your child's most appropriate placement.

Prioritize Issues.

Understand the order of importance of each of your child’s needs and which services or parts of a program can be de-emphasized to achieve the best goal in the end. Understanding the priorities and being willing to give up some things that are low priority, often helps resolve a case and helps preserve the relationship of the school and parent for future changes that may be needed.

Share all information with your school.

If your school needs more information on your child’s health situation, share it. If they request more information on past years in school, share that information. Remember, they need to know what to expect in order to understand why you feel certain services need to be provided.

Document everything and keep all documents.

Keep a record of every communication with your school.

1. Follow up an important conversation or meeting with a letter saying, for example: “Thank you for talking/meeting with me on (fill in date here) about my sons/daughters needs. I understand you have agreed to (whatever talk was over) by (date). Please let me know right away if my understanding is not accurate”.

2. Keep a log of all telephone and face-to- face conversations. Any event where something is said concerning your child’s needs or service/program options.

3. Take careful and very complete notes at any and all key meetings, particularly a team meeting.
4. Be sure that you have copies of everything the school system has.

5. Keep all documents in chronological order.

Be familiar with and understand
“Least Restrictive Environment” (LRE).

Special Education law requires that services be delivered in the least restrictive appropriate environment possible, meaning the setting closest to the regular education program.The IDEA sets up procedural guidelines to ensure a free appropriate education in the least restrictive environment tailored to each child's individual needs.

The law begins with the assumption that, to the maximum extent possible, children with disabilities should be educated with their non-disabled peers. Once the child's needs are assessed and necessary services and supports are determined, the placement options should begin with the regular or inclusive classroom. Children with disabilities do not have to start in a more restrictive or separate class and then "earn" the right to move to a less restrictive placement. If it is found that a regular education classroom would not meet the child's needs, even with support services, then another option may be pursued. Keep in mind that the child with a disability must benefit from the placement. The child should not be "dumped" in a classroom where the child is not receiving an appropriate education.

The law specifies that educational placement should be determined individually for each child, based on that child's specific needs, not solely on the diagnosis or category. No one program or amount of services is appropriate for all children with disabilities. A safe educational environment is important for all children. School safety concerns are addressed in IDEA. Educational services cannot be withheld as a disciplinary remedy. While students with disabilities may be suspended for disciplinary concerns that would also apply to general education students, educational services must continue at all times, even when a student is expelled for behavior not associated with his disability.

What if your child does not need an IEP?

Tips for getting educational needs met without an IEP

Meet with your school’s nurse before the first day of school if possible, to go over what CVS is and how the school can help in the event an episode begins at school.
Meet and discuss CVS and your child’s needs with the teacher who will have your student every day, the principal, bus driver, Art and Music teachers, coach, anyone in direct contact with your child.
Ask the principal if your student can see the classroom and meet the new teacher(s) early, before school starts. This will allow your student to know where the classroom is and know the teacher's face, removing some of the stress from the first day of school!
Have a plan of action ready before going to school the first day. For example: if an episode begins at school, your child has permission to leave wherever he/she is (with or without raising a hand and asking at that moment) and go straight to the nurse's office. There medications can be given (if appropriate), the nurse will provide as quiet and dark an office as possible and you can be phoned to come pick up your child.
Make sure the school has all the necessary phone numbers to reach you or another emergency contact in the event an episode begins during the school day.
Two or more weeks ahead of the first day of school, begin making changes in bed time, go to bed earlier, and begin waking your student up closer and closer to the time of day he/she will need to wake up to get ready for school.
Meet with the school counselor and begin the process of possibly setting up a 504 plan or an IDEA plan. They can help you make the decision if one is needed. If you already have a 504 or an IDEA in place, set up a time to discuss any possible changes you may need to put them into place.
Prior to school starting, ask the school to provide medical release forms for your physician to fill out and return in time for school to start so medications can be taken to school that very first day and given to the nurse.
Have your pharmacy refill prescriptions so you can provide medication to the nurse; remember: all must be in the pharmacy-labeled bottles with instructions written on them.
If riding the bus for the first time, ask the school if you can show your student around the bus compound, maybe even have the bus driver there to show him/her around the bus!
The night before that first morning, pick out clothes, check book bags, and maybe decide what is for breakfast in the morning. Do as much the week or night before as possible to keep that morning calm!
If your child is uneasy and worried about beginning an episode at school, reassure him/her that you are only a phone call away, and that the nurse and even the teacher know what to do.

Cyclic Vomiting Syndrome Association, Hope Starts Here