48Oct Mental Illness Awareness Week

Individual Education Plans or IEPs

The Fall 2015 issue of NAMI's publication, "Advocate" has an excellent one page article with information and tips to help understand and create an IEP should your child need one. Click here to read, "Putting a Plan in Pace to Help Your Child Succeed at School," by Jacob Bradshaw, NAMI Intern.

When my husband and I realized that we needed to withdraw my daughter from 8th grade in order for her to attend treatment full-time for her depression and eating disorder, we had many concerns, not the least of which was what would happen with her education. I contacted her middle school guidance counselor, informed her of the latest development, and asked what we should do, what our options were to help Olivia continue her schooling.

“We don’t really have any,” she replied. “Since she’s not going to be here there isn’t much we can do. When she’s ready to come back to school, let me know.”

Though this answer seemed inadequate, I accepted it without question. After all, the counselor was the school employee; I wasn’t.

As Olivia’s treatment wore on, eventually, I complained to my therapist. “I don’t understand this,” I said. “At some point, Olivia will go back to school. I don’t get why the school isn’t doing anything to support us right now.”

My therapist looked me in the eye and said, “This is what I want you to do. Call up that guidance counselor and tell her this, ‘My daughter’s disability is preventing her from getting an education.’ That should get the ball rolling.”

Man, was my therapist right. The minute I made that call, action took place! Phone calls to the district were made. Meetings were scheduled. People became involved. Time lines were followed. I don’t know why the guidance counselor told us nothing could be done. I’m sure she was not being malicious. Perhaps she was ill-informed. Perhaps she didn’t understand that the severity of my daughter’s mental illness at the time was such that it would qualify as a disability. Either way, it doesn’t matter. The point is that children whose learning is compromised, for whatever disability-related reason, have legal protections.

Here are the top ten lessons I learned during our IEP process:
1.    Don’t assume the answer you’re getting is the correct one (especially at the outset). If you feel like you’re getting the run-around, or not getting the information you need, or don’t understand what you’re being told or why, seek out more information. Try to find said information from someone who specializes in the type of issue your child is having. My therapist happened to be a person with a lot of experience working with school districts, kids, and parents.
2.    When the process gets rolling, know your rights. By law, certain time-lines and protocols have to be followed from the start of the IEP process. If the school district isn’t following them, they are violating those laws. (I know a woman who sued her school district for this very issue – the school not following proper time-lines and proper protocol – and won. A bittersweet victory to be sure, but the money helped recoup some out of pocket expenses the family paid for treatment.)
3.    Be prepared. Write notes. A lot of notes. You’ll have to tell your story over and over again. I found it easier to remember the important information by typing up our history. That way, I could also hand that document over for back-up to the school psychologist and the school district. Also, keep a list of all current and former clinicians or anyone involved in your child’s treatment with names, addresses, phone numbers, and pertinent dates. Keep the same list for former and current medications including dosages and prescribing physician(s). Take notes at each meeting – record dates and times, attendance and what was said.
4.    Be brutally honest. There may be times, telling your family’s story, that you feel sad, ashamed, scared, enraged, guilty, grief-filled, and inadequate. Stigma is real; it’s the number one reason people don’t get the help they need. Don’t let fear stop you. Ultimately, the team is there to provide your child with the tools necessary to succeed.  
5.    Be cordial but insistent. In theory, you’re all on the same team. The adage that you get more bees with honey than with vinegar is, of course, true. I sent notes to the school district personnel who attended our early meetings to thank them for their help in putting a plan in place to help Olivia. But again, don’t take an answer as written in stone if you don’t agree that it’s best for your child. No one knows your child better than you do.
6.    Remember:  No one knows your child better than you do. Stay informed so you can be his or her best and most vocal advocate.
7.    Before the actual assessment process begins, ask if any additional tests are required. Testing for emotional disturbance is not a part of the standard IEP testing process in our school district. Once again, it was my therapist who reminded me to ask for an ISES assessment. ISES stands for Intensive Social and Emotional Services. If I had not requested this test specifically, my daughter would not have been tested on the very issues that were preventing her from attending school.
8.    Your child does have to be present for testing, so plan accordingly. There are many, many meetings that happen during the IEP process. Your child does not need to be present for most of them. He or she will, however, have to be tested in person. The timing happened to work out that my daughter returned home from residential treatment in May, shortly before the end of the school year. We were able to squeeze her testing in before the summer break. This was very important for having her IEP plan in place for the start of her freshman year of high school.
9.    You have the right to say no. As we were getting her plan in place, the special education team strongly encouraged us to enroll my daughter in a different school for high school. They suggested a school that specializes in working with children experiencing severe emotional disturbance. I rejected this suggestion. Olivia was adamant that she wanted to return to her “normal” school for the start of her high school career and be with her friends. I felt we had to give her the chance. Changing schools later would have been an option if she needed it. But what message would we have sent to her had we automatically said, “No, you can’t handle it”?
10.    As hard as it sounds, take care of yourself. Living with and loving a child with mental illness can be exasperating, draining, and downright hard. You may be juggling life with other children and a job, trying to do the best you can while being stretched far too thin. Whatever form it takes – reading a good book, doing an arts and crafts project, taking a bath, going to the gym – find a few minutes of down time to cope in the way that works best for you.

What our plan looked like: My daughter’s IEP ended up including supports that were mostly outside the classroom. When she was attending those first few months of 8th grade (before we had to pull her out), school work was never the problem. Her emotions were. Therefore, we didn’t need accommodations such as extra time for assignments or tests. We were signed up instead with a program called Coeds. Over the summer after she returned home and all through her freshman year, we had a team of people to support her and my husband and me. Starting out, Olivia met with her specialist four times a week. During these meetings, they talked and worked on positive coping skills. One time a week, my husband and I met with a “parent” specialist who listened to our concerns and helped us problem-solve school and learning related issues. Once a month we had a family meeting where all of met to discuss our progress. When freshman year started, my daughter also had access to the school therapist, and met with her weekly. Olivia joined the water polo team and then the swim team. Her meetings with the Coeds specialist reduced to a couple of times per week. All of this support was vital to the successful completion of her freshman year of school. By the end of that year, we were able to relinquish the Coeds program, and by the end of her sophomore year, we were able to relinquish the school-based therapist.

Right now, Olivia’s junior year is well under way and she’s doing great. She’s getting good grades, still participates in athletics, has a good group of supportive friends, and even got a Varsity letter in swim at the end of last year. Her IEP is still in place, and will be reviewed at the end of this school year. The IEP process included a lot of bureaucracy, but the work was well worth the effort. Each morning, I drop my daughter off at the curb in front of school, tell her to have a great day, and she does.  

(Note: An IEP should not be confused with a 504 plan or with Home-Health education. Click here to read the differences between a 504 and an IEP. In our school district, there is a process available to receive in-home tutoring for students who are going to miss at least 2 consecutive weeks of school due to a medical issue; this is Home-Health education. Contact your local school for more information.)

That's my two cents. What's yours?: Have you had experience with IEP or 504 plans? If so, do you have a tip I missed that might help someone else?


  1. This is a great road map for those going through the process of IEP – which by definition (individual) doesn't always take into account the individual needs! Thank you for sharing!!

  2. You've created such a helpful resource here, Tracey. Thank you!

    Our family has personal experience with creating and maintaining a 504 plan for our teenage daughter. While there are differences between 504 plans and IEPs, I think all of your suggestions are helpful in both situations.

    I'd like to suggest adding two more resources: the National Disability Rights Network (NDRN) http://www.ndrn.org/en/issues/education.html, as well as each state's protection and advocacy organization (see here for a map http://www.ndrn.org/index.php). These are part of the same network of federal and state-based organizations specializing in the rights of people with disabilities. They can be a helpful source of information, as well as advocacy and representation for individuals as well as on the systems level.

  3. What a great post! I think a lot of parents get so caught up in the problems their children have and what is medically needed that we forget the school doesn't automatically know how to handle the issues, especially if they don't really understand what is truly happening in a child's brain.

    We didn't need an IEP or 504, but in my son's senior year of high school, his inappropriate behavior was starting to pop up at school (nothing violent). He was seeing a psychiatrist, but hadn't been officially diagnosed with a mental illness yet. The vice principal called me one day to say that my son was going to be suspended for 3 days because he called one of his teachers a whore (not to her face and not in her classroom). I felt awful having to do this because of the stigma, but I had to disclose that my son was being evaluated by a psychiatrist; that yes, what he said was malicious, but he was spiraling out of control with many issues, including impulse control. I begged that he not suspend my son, at this critical time when the colleges he was accepted at would be reviewing that latter part of his senior record. Luckily, the vice principal did not suspend my son, and yes, a few months later, my son was on a mood disorder medication, and soon thereafter, on to college. : )

    My point is that if the school thinks your child is acting inappropriately, don't be surprised if you find out they simply think your child has a mean streak. It seems the schools, while maybe better now, may simply punish the behavior as if your child is 100% "normal".

    As you've written about already, Tracey, it would be great for parents and teachers/administrators to be partners in identifying problems, such as depression, before a child gets "in trouble" at school for a disability of brain chemistry!

  4. Thank you for your comment Brenda. I'm sorry to hear of your sons trouble, but thank goodness he had you to advocate for him. You bring up such an important point re: behavior. Even when people (parents, teachers, other school officials) know that a child is suffering from a mental illness, it is still looked upon as a "behavior" problem. The behavior is the symptom! Not the problem. When I sit on the panel of NAMI's Parents and Teachers As Allies program, we make sure to specify that the behaviors teacher may be seeing in a classroom could suggest not that the child has behavioral problems (although this can be the case) but that the problems could be more than that. It is such a struggle to break the hold that the fear of stigma has on everyone, including school personnel too. I recently heard the story of a teacher who said she's been desperately trying to get the parents of a boy with a diagnosis of mental illness to get him the help he needs, but the parents won't do it. She's incredibly frustrated, of course. But yes, as I've written about before, early detection and early intervention is critical to recovery. NAMI's statistic on the length of time it's takes most people to get the treatment they need–because of stigma–is 8 to 10 years! Eight to 10 years! Think about how much treatment could have gone into those wasted years. Anyway, one big push is to get better detection into schools and teachers will be a big part of helping kids to get the help they need. Progress is coming, slowly but surely.

  5. So great to hear you and NAMI are training teachers on what to be on the lookout for.

    Years ago an elementary school teacher told me she suspected one of her students had ADHD, but she wasn't allowed to say anything to the parent. Maybe she or the school could have been sued(for what, I don't know). She could, of course, say certain things to the parents, like what behaviors the child exhibited. But to suggest that the parents take their child to get tested for ADHD? No, the teacher in no way could suggest such a thing! Why not? Partially because maybe the child didn't have ADHD. Maybe the child was having a reaction to food dye, the teacher suggested.

    So in fear of offending parents or in fear of school staff/districts getting sued, school personnel used to keep their mouths closed until something awful happened? Instead of early intervention in hopes of preventing a crisis? In hope of getting the child help so that he or she is more successful and happy (and therefore the parents and teachers, too!)? We are finally heading in the right direction, thank goodness.

    Maybe an attorney or school employee needs to chime in on this topic. I am curious what a school employee is "allowed" to say to a parent beyond listing off unacceptable or odd behaviors. What liability would the school have if a parent was offended at the suggestion that his/her child might have a mental illness? We know there can be a certain amount of denial when facing such a huge problem…

  6. What a great resource for families. Thank you sharing your family with us. I know a lot of parents who were afraid their kids would be labeled , I think if we could eliminate the stigma and knew the services that came along with asking for help, that would be a great benefit.

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