Wednesday, March 21, 2012

School Accommodations for Kids with ME/CFS and Related Illnesses

[UPDATE 9-21: Our sons are now in their early 20's. The younger one fully recovered from his ME/CFS at age 16, after ten years of mild illness. The older one still has ME/CFS and three tick infections. Both graduated from college. The younger one is working full-time and supporting himself. The older one was able to move in with his girlfriend and live on his own and has been working about 30 hours a week this summer successfully, which is a huge step forward! I have not yet written a full blog post about accommodations in college, but they are just as important as in the younger grades. This post does provide a brief outline of how to talk to school personnel (including at colleges/universities) about ME/CFS and some accommodations in college that can help. It is at least as important to provide as many effective treatments as possible for your child/teen/young adult so that they can manage school more easily! In this post, How My Son Went from Couchbound to College, I outline some of the treatments that helped him improve enough from a terrible senior year (with 95 days' absent!) to starting college on time with his peers in the fall. You can also refer to the Treatments tab in this blog for a full summary of the treatments that have helped all of us.]

I know I’ve been promising this post for a long time (and it will probably be at least two posts), but I’ve been trying to gather some information to pass along and also wanted to wait until we got through our latest (hopefully last!) 504 meeting for our 17-year old son.  We finally accomplished that two weeks ago, and I sincerely hope that by sharing our experiences, we can possibly prevent some of you from going through the same sort of challenges and difficulties we have faced over the last 8 years.

First, a bit of background for those who may not be regular readers of this blog.  We have two sons, now ages 17 and 14, who have had ME/CFS since they were 10 and 6, respectively.  The older son has also recently been diagnosed with Lyme disease plus two other tick-borne infections, and treatment of those has made him much, much worse this past year.  In all, we have dealt with four different schools over the past eight years, negotiating accommodations of all kinds for our sons; they have been, at times, full-time in school but absent a lot, part-time in school with very limited classwork, and for our older son this year, mostly homebound.  They have always been in public schools, but we have developed accommodation plans with elementary schools, middle schools, and a charter high school. [

Let’s start with the basics:   
What are accommodation plans?  Here in the U.S., there are two types of plans that can be developed for kids with any kind of disability, including the disabilities caused by ME/CFS, fibromyalgia, POTS, Lyme disease, EDS, and other related conditions: 504 Plans and IEPs (Individualized Education Programs).  Oddly enough, these two types of accommodation plans fall under completely different parts of the legal system.

A 504 Plan can be created under Section 504 of the Rehabilitation Act of 1973, which applies to all public schools (sorry, if your child goes to private school, the law doesn’t cover him or her).  Section 504 is anti-discrimination legislation, administered by the Office of Civil Rights.  Unfortunately, this legislation does not provide any funding to schools, so a 504 Plan is appropriate if your child does not need accommodations that will cost the school much money (i.e. going to school part-time, teachers reducing the volume of work, waiving attendance requirements, allowing typing or a scribe, etc.). ME/CFS qualifies under Section 504 as “a physical or mental impairment which substantially limits a major life activity.”

Some kids with ME/CFS and similar illnesses qualify under the Individuals with Disabilities Education Act (IDEA) for an Individualized Education Program (IEP).  This is the appropriate way to go if your child is severely disabled, if his or her level of achievement has been affected by ME/CFS, and/or if the accommodations will cost the school money.  As a part of IDEA, schools can receive funding from the government to help pay for the accommodations in an IEP.  Within IDEA, ME/CFS qualifies as “other health impairment”: “…having limited strength, vitality or alertness to environmental stimuli, that results in limited alertness to the educational environment, that is due to chronic or acute health problems…and adversely affects a child’s academic performance.”

So, here are some steps to get you started:

Learn the law and understand your child’s rights.  This is a critical first step.  For reasons we have never understood, schools always seem to want to get by with minimal accommodations, and there is always at least one person on staff who will fight you every step of the way.  You need to understand your child’s rights so that you can be an effective advocate for him or her. You can read more about 504 Plans and IEPs at and the ADDitude website.  Here's a helpful chart about IEPs and 504 Plans. Another excellent resource is the Parents Information Center (PIC); there is usually one in every state or region (Search for “parent information center” and your state; here is the PIC in Delaware).  If your child has ME/CFS, he or she does qualify for a 504 Plan or an IEP.  The school is probably not aware of the full range of accommodations they can provide, just because they haven’t encountered them in the past.  I will write another blog post later this week, listing examples of different kinds of accommodations that can help kids with CFS.

Get help from an Advocate.  Under these laws, it is your right as the parents of a disabled child to bring an Educational Advocate along with you to all school meetings.  We highly recommend you do this, right from the start.  Without an advocate, you are probably going to encounter major battles.  Every time this happened, it stunned me--why wouldn’t the school want to help a sick child?--but it happened every time.  We are very fortunate to have two parents in our local ME/CFS group who act as Advocates professionally and who were able to recommend another Advocate to us when we needed one for this last meeting (the school was strongly against our using our friends as Advocates because their son attends the same school).  So, how to find one if you aren’t so fortunate?  Call your state Department of Education, your local PIC office, even local colleges and universities.  You are looking for someone with extensive experience in education – and particularly special education, IEPs, and 504 Plans – who is willing to serve as your Advocate. Some will work for free or charge only a small fee. Here's an article on How an Advocate Could Help Your Child. When we finally brought an advocate with us, it was like someone had flipped a switch. He barely even said anything, but just having him in the meeting changed everything--the teachers and principal who'd been fighting us all year suddenly fell over themselves to help our son. Take some hard-won advice: Bring in an Advocate right from the start.

Understand what is going on behind the scenes.  This is something else that shocked us – over and over and over again.  Know this--that when you go into a school meeting, thinking you are there to discuss your child’s needs and figure out together how to help him/her, the school administrators and/or teachers have already met ahead of time on their own and determined what they think they can provide to your child … and it’s rarely what your child needs.  I know this sounds cynical, but I am one of the least cynical people on the planet (some might even say na├»ve and too-trusting!).  My husband and I have walked out of almost every school meeting (at four different schools!), in shock and feeling like we’ve been ambushed. 

Educate school staff about ME/CFS.  It is likely that the school staff (504 coordinator, guidance counselor, IEP coordinator, principal, teachers) are unfamiliar with ME/CFS and almost certainly don’t understand how debilitating it is.  I have always brought a stack of copies of informative articles to every 504 meeting to hand out. Here are some that might help:

When things don’t work out, get extra help.  Don’t give up!  It’s not only possible you won’t get what your child needs in the first meeting, it’s likely (again, I am an optimist, but this is based on hard experience).  So, if you can’t make any progress in the first meeting, bring extra help to the next one.  If the principal was not present, get him or her involved; this worked for us earlier this year when our son needed homebound instruction, and the vice principal just said, “Sorry, we’d like to help, but we can’t afford it.”  The principal came in, listened to a recap, and said, “Of course, we have to help this student.  We’ll have to find a way to pay for it.” (If he had needed homebound from the start, he would have had an IEP instead of a 504 Plan and the government would have paid for the tutors). Back in middle school, when a math teacher was causing problems and the principal was no help, we contacted the District 504 Coordinator. She had a lot more experience with different kinds of accommodations, and she told the school they had to accommodate our son. You can also contact your state Department of Education. If all else fails, you may need to hire a lawyer or a mediator (check with your local PIC or your state DOE). But first ... find an Educational Advocate! (see above).

So, that’s a basic outline of how to get started.  To recap, some of the best resources include:

When we were just starting out with all of this eight years ago, the most valuable resource by far was a book, co-written by Dr. David Bell (pediatric CFS expert) and Mary Robinson, the mother of 2 kids with CFS: AParents’ Guide to CFIDS: How to Be an Advocate for Your Child With Chronic Fatigue Immune Dysfunction.  This book covers school accommodations in detail and was very helpful to us (see the link below).

Next up, a long list of example accommodations that might help your child.
Please share your comments here with other parents, based on your own experiences (and certainly let me know if I've gotten anything wrong here!) 

NOTE: If you are a parent with a child/teen/young adult with ME/CFS (or related illnesses), you might be interested in a Facebook group for parents of sick kids that I started.


Renee said...

Sue, I don't have children of course who need this, but I wanted to read your post and comment on how great it is that you are writing this for others. Amazing! What a gift for those who need this info. and encouragement.

Anonymous said...

thanks for sharing, excellent info as always, best wishes to you and your family

Anonymous said...

Children and young adults with cfs/me being able to continue their education is something I feel very strongly about. I know how hard it was for me but I got there in the end. Thank you so much for writing this so others out there have the information to help them. And good luck to you all – it is great your sons have such supportive parents! :)

Anonymous said...

Hi Sue - I think the information you provided can be very helpful to others on this journey. Our experience even with much of what you have written was very different. I won't o into great details here but even with all the help some schools will keep dishing it out. We had hired an educational lawyer for 8 months - very pricey and it didn't get us anywhere. She said this would most likely carry on this way until or daughter got out of high school. (Please note that like most kids with this stuff our daughter was a high honors, athletic, very social and well liked girl. No history of any school issues.) Well, I couldn't afford to carry a lawyer for4 - 5 years. The person I had to deal with in the state education department wouldn't do anything until I physically had her going to school and then they would help. The Office of Civil Rights was nice and supportive but they have their limits too. They would mediate if we needed to but they won't monitor the situation. You can keep filing complaints against the school. We had to do phone conversations between our treating doctor and the school doctor,nurse, and usually one other person. I was treated criminally. Even though the school never believed the diagnoses the school doctor finally said after several meetings that there wasn't anything he could do other than put a stamp of approval on what our doctor was doing. The school would repeatedly delay getting tutors for us or even when they had tutors signed up they wouldn't start them for a month. They would not work at finding tutors for us either. Sometimes I have reached out to some of my daughters teachers from the past and explained the situation. I have had more support that way and have gotten some of the necessary tutors. We brought the vice president of the CT CFIDS and FM Association to some of these meetings. She brought lots of info and tried to educate the school personnel. Bottom line - the school didn't care. They didn't even read half the stuff or share it with the team. After two years of fighting I had decided that I wasn't fighting anymore. My daughter isn't stupid and the stress was ruining my life along with other health issues so if she ended up having to do a GED so be it. I will say the tutors we have had couldn't be any better. So supportive. They work with Megan so they understand some of what she is going through. We still have a ways to go to graduation from high school so I don't know who this will all turn out. I'll let you know in the future. Oh, when called to talk to our principal about getting help he said, "Oh, sorry, I don't get involved in this kind of stuff!!!" As most of you know you have to decide where to pt your energy. It can become very trying when you can't get the support from the schools, can't find good doctors or supportive doctors, then whatever other issues are big in ones life. Any info that can be shared like Sue's may just help the next person going through this. Thanks you Sue. Kim

Sue Jackson said...

Hi, Kim -

I've heard parts of your story before, but thanks so much for sharing it here. It is absolutely horrible that you and your daughter were treated so badly.

You are so right - these battles with school are exhausting and upsetting.
Good for you for your persistence and hard work.

I'm glad to hear you finally found some good tutors to help support her.


Lisa S said...

This is great information. Here's what I would add:

Always, always take your own notes, and consider voice recording all formal meetings. I don't know how many times I thought we agreed to something in a meeting that the school then said never happened.

Keep a notebook with printouts of emails sent / recieved, meeting notes, etc. One good way to keep a record of meetings, is to send an email right after the meeting, saying, "Thank you so much for meeting with me; here is what I understood we discussed" and include your own most pertinent notes. Then you have a paper trail. This is especially important when the meeting was informal, such as with a teacher after class.

Consider carefully how much to share with your child. Even older children that understand what is going on and know that it is their right to have advocates, can get overwhelmed by the idea that "they are causing so much trouble."

This is a hard-one to quantify, but -- school personnel will often send a subtle message that you are the are too overprotective, hovering, bitchy, whatever. Do not let yourself ever buy into this message, regardless of whether there is a shred of truth to's a ploy on their part to get you to back down.

And lastly, look around your area for homeschooling resources if that is an option for your family. I was one of those people that said, "Oh, I could never do that." The truth is, I was already spending tons of energy on fighting the school, so at least in our case, it was a huge weight lifted to let all that go. Our life is so much less stressful now, and in all honesty, it takes very little time to learn the amount kids learn in school, and frees up energy for extracurricular activities that are also important (many of which the local schools are obligated to allow kids to participate in after withdrawing to homeschool).

Sue Jackson said...

Thanks so much for adding your tips, Lisa!! I totally forgot to mention the importance of keeping records and taking notes. That is SO critical. And to send an e-mail afterward confirming "this is what we agreed to." Even if the school intends to do that, I have found it takes them forever to get around to it. I have HUGE folders filled with Jamie's records - both medical and school. And printing out e-mails really came in handy this year with a contentious teacher.

Great tips! Thanks!


Anonymous said...

I have had ME since I was 11. Homebound or homeschooling was a challenge until I got an IEP. Schools have to provide transportation, teachers with special schedules, and allow children to visit schools when well enough. My IEP got me through my core credits so I could graduate and attend community college. I recommend having a meeting with teachers and kids to educate them about the disease. About how isolating it can be to not attend school. Set up times to visit at lunch if that is all the child feels well enough to do. Attend school games, dances, and other extra cirricular activities even if it's in a wheelchair. I learned a long time ago that the disease doesn't define you so don't let others define you because you have a chronic disease. . Attend theatre, listen to light music and attend club meetings if able or substitute things around town for credits. The school cannot discriminate and an Individual Education Plan must be followed. My family was my biggest advocates. If they can't be find an older patient in the community that can advocate and educate on behalf of you. Don't take no for an answer. Even though I was completely bedridden with severe ME from the age of 11. I graduated early and received 13 credits in community college through home schooling. Tests were broken up or given on the computer. Many years later I found yoga, and meditation at school. I highly recommend asking in your IEP if your child can get credit for PE by walking outside to the mailbox or a stop sign. If not special yoga for MS DVD's , therapeutic massage, acupuncture, physical therapy, water training can all be included. You can also create any class they don't have and get credit for it. Art classes up the street fulfilled creative credits and were able to accommodate a schedule of I'm just not well enough to sit up today. Anyway my heart truly goes out to you and your boys. I hope they heal with each day. I got to 70% remission with experimental antiviraltreatments and integrative therapy including acupuncture, yoga, meditation, chinese herbs, Oh and I forgot to say you ,the school counselor and principal should meet with you and your child's psychologist. My psychologist was my biggest advocate she knew it was a very real and debilitating disease. She helped me cope with chronic illness with all of these ideas and she was able to get me the special classes I needed and teachers to understand. 24 years later I'm married and living a semi independent life working almost full time.

Sue Jackson said...

Thanks so much for sharing your story and your tips. How wonderful that you are partially recovered, married, and living an almost-normal life now!

You have some excellent tips here. So glad to hear you were able to get an IEP and get through school.


Sue Jackson said...

Totally forgot something to include here until I read the comment above (there is just so much information!)...

The school is required BY LAW to provide your child an education in "the least restrictive environment." That mean that if your child can only make it to school for 1 class a day (or even less), they MUST allow him or her to do that - they can not force your child into 100% homebound instruction (as they tried to do with Jamie in middle school).

One local teen here has been attending just lunch and art class in school - just enough to allow her to remain connected to her peers but not so much that she tires out. She is getting all of her academic classes through homebound instruction. Her family had to bring in a lawyer to force the school to accommodate her.


Anonymous said...

I'm going thru the same with my son who suffers from fibro. Only now the school got family court involved and they are trying to TAKE MY CHILD AWAY. HERE'S WHAT THEY GAVE US A ELEVATOR KEY AND 2 HRS OF TUTORING WE CAN NOT AFFORD PRIVATE LAWYERS SO WE ARE STUCK WITH PUBLIC DEFENDERS IF ANYONE CAN HELP US PLEASE CONTACT ME

Unknown said...

I am so glad to have found your blog. I have a 15.5 yr old daughter who just relapsed with CFIDS (was nearly bedridden from 12-14 yrs old, went in remission and got back to school and gymnastics full time for 1.5 yrs, started gymnastics competition season, then relapsed 4 months ago). I also have a 17 year old daughter with Advanced Neurological Lyme Disease and two co-infections. Thankfully their school has been supportive and accommodating, but I will follow advice here and start keeping better records in case I need it down the road.