Wednesday, August 31, 2011

Back to School Days with Special Medical Needs: Getting Your Child's Special Needs Met with IEP and 504 Plans

Getting Your Child's Educational Needs Met with IEP and 504 Plans

This blog is the second in our "Back to SchoolDaze" series and is a continuation of our discussion about effective communication with teachers and school staff. This week we'll look at IEP and 504 Plans which are federal regulations put in place to guarantee an education for children with special needs (which includes medical issues).

IEP and 504 Plans are two separate plans with distinct requirements although there can be some overlap between the two. Each plan creates a legal document which outlines your child's specific needs and accommodations while at school. Parents and schools generally work together to create the plan for the child.  

Although the subject is complex and confusing, it's important for you to be aware of the basics. Taking medication at school, meeting dietary requirements, attendance, schoolwork, the ability to perform at grade level, exceptions to grading policies, and perhaps even safety issues (like accommodations for allergies), may all be affected by your awareness of your child's rights.

Busy, budget-strapped school systems and administrators may not always have your child's best interests as a priority. It's not that they don't care- of course they do. It's just a matter of competing priorities, special interests, and needs. Parents need to be proactive advocates for their children and it starts with learning about these important issues. Your child's best interests are in your hands. And as you set a good example of standing up for your child's needs, you'll be teaching your child how to look out for him or herself as well.

Schools may or may not initiate the process of putting a plan in place. Some schools may even discourage you  for various reasons. With 1000's of schools across America, there is a wide range of good, bad and ugly. Unfortunately, there are plenty of lawsuits against schools that refuse to (or simply can't) meet the requirements of these federal regulations. Having a basic understanding of these plans will help give you the power and tools to ensure that your child's physical and educational needs are met at school.

Federal regulations have been set up to prevent discrimination against individuals with disabilities. As a part of these regulations, both IEP and 504 Plans ensure that all children are granted an opportunity to receive an education regardless of disability or physical limitation. There are subtle but very important differences between the two types of plans. Deciding which one is right for your child is essential and should be discussed with experts if you are unsure. A primary criteria is whether or not your child needs specialized education. If this is the case, it is most likely that you would need an Individualized Educational Plan (IEP).

IEP Basics: IEPs speak specifically to the rights of a "Free Appropriate Public Education (FAPE)" and are derived from the Individuals with Disabilities Education Act (IDEA).  The Individualized Educational Plan (IEP) was developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives specialized instruction and related services.

"Special education" under IDEA does not mean placement into a special education classroom. It means the child has been identified as having unique educational needs related to his or her disability and is entitled to an IEP to meet these needs. To be eligible for special education services, it is necessary to prove that the child has a disability that interferes with his or her education and performance. Children who receive special education services under the IDEA are automatically protected under Section 504.

Not all students who have disabilities require specialized instruction. For students with disabilities who do not require specialized instruction but need the assurance that they will receive equal access to public education and services, a document called a 504 Plan is created to outline their specific requirements.

504 Plan Basics: 504 Plans are derived from Section 504 of the Rehabilitation Act and the Americans with Disabilities Act (ADA). Section 504 is a civil rights law that applies to all institutions receiving public funds including public schools, libraries, etc. and is designed to guarantee that people with disabilities will not be discriminated against.

Under Section 504, the child with a disability may receive accommodations and modifications that are not available to children who are not disabled. Examples of common 504 Plan accommodations include preferential seating, modified homework and testing schedules, and assistive technology (like recording devices for note-taking, special keyboards for physical disabilities, etc.).

Some state laws require a health care plan to be in place for all students who require medication and/or treatment while in school attendance. This could be a 504 Plan, IEP, or another document called an Individualized Health Care Plan (IHCP or IHP). IHCP's give detailed information about the medical services your child will require at school. See last week's blog for more information on IHCP's.

IEP or 504 Plan or IHCP: Which One? Very generally speaking, the question of whether you need an IEP or 504 Plan is that of special accommodation. Does your child need something different than what is already available at the school? If there are already systems in place to meet your child's healthcare needs, then an IHCP might be all you need. Most schools have systems in place to deal with taking pills, food allergies, asthma and other more common health issues. But if your child needs special accommodations, then an IEP or 504 Plan is probably needed. And the primary distinction between these two plans is the need for specialized instruction. If your child needs specialized instruction, then the IEP provides for this.

Of course there are exceptions and caveats to all of this and here's an important one: If your child is experiencing learning difficulties due to excessive absences from illness, he or she might qualify for an IEP under the "Other Health Impairments" section of the Individuals with Disabilities Education Act (IDEA).

"Other Health Impairment" is one of the 14 categories of disability listed in the IDEA. Under this section, a child who has an “other health impairment” is likely to be eligible for special services to help the child address his or her special educational needs resulting from the disability. Children with cystic fibrosis, cancer, or other medical conditions that require extended hospital stays or periods of disability may fall under this category and be eligible for private tutoring.

There is often confusion when it comes to private schools and their ability to serve children’s needs in this area. It is important to remember that IEP and 504 Plans are only guaranteed for children at schools that receive government funds and/or services. It would be vital to speak in depth to administration of any private school you are interested in your child attending to see whether or not this is the case for them and how, exactly, these matters are handled.

Where to Start? If your child has a disability or chronic health condition and may have need of accommodations during the school year, the place to start is to request a meeting in writing with the teacher, copied to anyone else you feel is appropriate (e.g. the nurse, principal.) This needs to be formally written, not a quick ‘note’ sent in your child’s folder or email. This starts a ‘clock’ on a timeline the school must work within to ensure the child’s needs are handled in a timely manner.

Outline your main concerns in the letter and state you are requesting a team meeting to discuss the need for an IEP or 504 plan for your child. They are required to respond to you and schedule a meeting within a short time. Your child’s medical provider can also help a great deal by providing a letter stipulating what your child’s needs are. If your child’s care team or hospital has access to one, medical social workers are wonderful resources as well.

I did not need a 504 Plan for my own two children with cystic fibrosis until this year. My children's needs have always been met by providing the school with a letter that served as a health care plan (the subject of last week's blog). But as my oldest goes into middle school, it's time to take the steps to ensure that we have a plan in place to deal with the complexities his illness might bring especially as he moves into high school.

So, now that you have a basic understanding of IEP and 504 Plans, I hope you'll join me next week for a blog on how to present and discuss these plans with your school administrators in ways that create a positive, collaborative relationship rather than an adversarial one.

There are no absolute guarantees that what you put in your plan will be met. Designing a well-written plan that is likely to be accepted by the school and will meet your child's needs now and into the future is an art form that requires patience, knowledge, and good communication skills. Take the time learn about this now rather than waiting until there's a problem at school. Your child's future is at stake.

Lisa C. Greene is the mother of two children with cystic fibrosis, a certified parent coach, parenting educator, and public speaker. She is also the co-author with Foster Cline, MD of the award-winning Love and Logic® book “ParentingChildren with Health Issues.”   For more information, visit

This information is not meant to replace professional medical, legal, or mental health care. 

Conners, S., M. Ed (2002), Section 504, the Americans with Disabilities Act (ADA)
vs. The Individuals with Disabilities Education Act (IDEA): What is the Difference,
Online at:

Holly, Tips for Completing a 504 Plan,

Logsdon, A. (20XX), Top 5 Comparative Points Between Section 504 and IDEA,
Online at:


University of WA (2002), What is the difference between an IEP and a 504 Plan?,
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US Dept of Education, Office for Civil Rights,

Wednesday, August 24, 2011

Back to School Days with Special Medical Needs: Start the School Year on Track with a Parent-Teacher Meeting

Communicate Upfront with Teachers and Staff 

It's that time of year again- back to school. And with it comes an air of excitement, anticipation and, for parents, some stress and worry. "Will my child like his or her teachers?" "Will he or she get along with the other kids?" "Will my child do well this year?" And, for those of us with special medical needs, "How will I ensure that my child's needs are taken care of?"

Of course, as loving parents, we want everything to go "just right". But, as we all know, the reality is that things don't always work out the way we'd like. Kids get teased and left out, teachers aren't perfect, children don't always go to the head of the class, medications get forgotten, and there are plenty of things that can get in the way of "the perfect school year." And of course, there's always head lice to keep us on our toes. (Ewww!)

The good news is that each of these "experiences" can provide our child, and us, with a new opportunity to learn and grow. And, with a bit of thoughtful planning, we can increase the odds that the year will go well and our child's special needs will be met.

Let's start with effective communication. This is the most important thing you can do to help your child get started on the right track. This includes communicating with the teachers, school staff and administration, your child and your child's peers. This first blog will deal with communicating with your child's teachers.

About a week or two before school starts, request a meeting with your child's teacher(s). The subject matter of this meeting should be to discuss and document your child’s medical requirements and the process for getting those needs met at school. You’ll also want to be prepared to educate about the basics of your child's medical condition.

Depending on your child’s needs, this initial conversation might result in starting the process of creating an IEP or 504 Plan (which we’ll discuss in next week’s blog) especially if this is your child’s first year at this school. This conversation should take place every year with your new teacher even if you have an IEP or 504 Plan in place.

Be aware that if your child needs to take any medication at school including over-the-counter drugs, a medical authorization form for each medication needs to be signed by your doctor and turned in by the first day of school. Be sure to check on your school’s medication policies as far as labeling, location, and how the meds will be given to your child (by the teacher? Nurse? Office staff?).

Providing information in writing is essential. Even if you are unable to schedule a face-to-face meeting, make sure that you provide written documentation about your child's needs well before school starts. Teachers and staff are very busy during the first two weeks of school. They are less likely to pay close attention to anything you hand them when they have thirty kids running around the classroom on the first day of school.

I provide two basic documents to my kids' teachers a week before school. One is a letter that explains how the diagnosis of cystic fibrosis affects my children and what their needs are. Most illnesses have a wide range of symptoms and medical requirements and it helps the teacher to know what the particulars are for my child. The "teacher letter" is written in a way that helps the teacher understand each need plus it creates a partnership between me, the teacher and my child.

The other document I provide is a general pamphlet about my child's medical condition. Most medical conditions have something like this through a non-profit organization that supports the illness. If a pamphlet is not available, use a printed explanation from a trusted source like the National Institutes of Health (NIH). The point is to give the teacher, staff, and school nurse some basic information about your child's medical condition. You can view samples of the documents I use at the following link. Feel free to copy and modify as you see fit.

Many schools require a more formalized document called an Individualized Health Care Plan (IHCP or IHP). Your child's IHCP should include things like the medical services your child should receive at school including medication, when, where, how the services will be provided and by whom, and an emergency response plan that details possible emergencies and what to do. The IHCP should be shared with your teachers, kept in your child's school record, and attached to an IEP or 504 Plan if there is one in place (more on that next week). Schools often have their own version of an IHCP that can be filled out so be sure to ask. If not, samples of health care plans can be found online including ones written for specific medical conditions like diabetes, asthma, allergies, etc.

So, that's the first step to having a good school year- making sure that your child's school administrators and teachers are fully aware of your child's medical condition, the individual aspects of it that affect your child, and what your child will need at school.

It's also a good idea to provide this information to all staff who will come in contact with your child each day. Don't forget PE teachers, coaches, music teachers, special classes and "yard duties" (as my kids call the people who help on the playground).

Open, honest, thoughtful communication done upfront, before problems occur, will help ensure that your child will be understood, properly cared for, and safe throughout the year. 

Lisa C. Greene is the mother of two children with cystic fibrosis, a certified parent coach, parenting educator, and public speaker. She is also the co-author with Foster Cline, MD of the award-winning Love and Logic® book “Parenting Children with Health Issues.”   For more information, visit

Tuesday, August 2, 2011

Chronic Illness: When Two Stories Unite

As I (Lisa) travel around the country, I love connecting with people. I did a talk for a hemophilia organization and met a man with an interesting point of view about his illness.

I noticed him when we were waiting in line to register. He was a tall, older, African-American man with a certain grace about him despite a limp and a cane. He was dressed in lots of clothes including an overcoat; uncharacteristic for mild San Diego. But it was cold and rainy that day. He had a wide, toothy smile that lit up his whole face as he heartily greeted the volunteers working the registration table.  

Sitting down to eat some breakfast, he asked if he could join my daughter and I. "Of course!" I reply. After the typical pleasantries, I asked him, "So what brings you here to this conference?" "I have hemophilia and I am finally coming out of denial." "Oh?" I ask, "What do you mean?"

And he proceeded to tell me about how he'd been meaning to come to this conference for years but just couldn't face the fact that he had hemophilia. Finally, due to bad health, he couldn't ignore it any longer and had decided to get support. He was tired of doing it alone.

"You see," he explained, "I am one of seven children. And I tried to keep up with all of my brothers and sisters. I didn't want them to see me as weak or sick so I just basically shoved the fact that I have hemophilia into the back of my mind. I did the bare minimum to take care of myself but I've lived a life that now I am paying for. I hope others don't make the same mistakes."

I explained to him that I was there to talk with parents about raising children with hemophilia and I asked if he had any wisdom to share, if there was anything he wished his parents had done differently.

"I wish they would have taught me and my siblings about my hemophilia, talked about it openly within the family. The whole family was in denial. It's like my hemophilia didn't exist. So I didn't learn how to take care of myself and I didn't learn how to cope with it well. And now I am paying the price.  My life is kind of a mess right now. I am searching for answers and meaning."

I encouraged him that sometimes we just don't know where the turns in the road of life will take us and that by telling his story, he will help others and perhaps find meaning himself. Because we are our stories and we all have a story to tell. He seemed stunned as though the thought hadn't occurred to him.

A tall black man and a short white gal- two hearts and two stories connecting for a moment in time. I hope that I made a difference in his life like he did in mine.

Lisa C. Greene is the mother of two children with cystic fibrosis, an author and national public speaker. She wrote the award-winning book “Parenting Children with Health Issues” with Foster Cline, MD and published by Love and Logic. For more information, see