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 ParentAdvocates.org 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 naïve 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:

• ME/CFS in Children: Fact Sheet for Educational Professionals (CDC)
• School Nurses Can Improve the Life of Students with ME/CFS 
• School Fact Sheet (Mass. ME/CFS Association)
  
• The Impact of Severe ME/CFS on Student Learning and K-12 Educational Limitations

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:

• Your local Parent Information Center (PIC) – search for “parent information center” and your state
• The Children's section of the CDC's website on ME/CFS
  
• The Parent Advocate website
• Your state Department of Education website

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.