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 Jamie, 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. Jamie 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 Jamie 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 CFS, fibromyalgia, POTS, 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.).
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 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, 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 The Parental Advocate
and the CFIDS Association’s Youth page (link to Education resources. 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 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 teen 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.
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!). Ken and I have walked out of almost
every school meeting, 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 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. My
favorites are a reprint from School Nurse News of an article by
Dr. Bell, "Treating Pediatric CFS," which is good for emphasizing the
seriousness of CFS and "Tips for Teachers of Young People with CFIDS" which is excellent for
teachers. Both of those can be
downloaded and/or printed from the
CFIDS Association’s Youth Education section. I also usually hand out a copy of the
CFIDS Association’s Pediatric CFS Fact Sheet (
available at this link, along
with other informative materials).
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 Jamie 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 Jamie 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 Jamie. 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).
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: A
Parents’ 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.