Pediatric cancer - IEP vs. 504

[Natasha]

My 10yo son was diagnosed with brain cancer this summer. When school started he was not doing great, and school pushed for wheel chair and (as we learned last week) made his aide check water intake, bathroom breaks, etc - none of that was requested by us or listed in the doctor’s note. My kid has been feeling better, and he (with support of his medical team) wants to participate in school more, does not need the wheelchair, can attend PE at his discretion, etc. School has been extremely reluctant to easen the restrictions they themselves put in the first place and even reached out to the medical team over my head asking about my son’s prognosis (!) and advocating for physical restrictions. They received no such information because the medical team refused to provide it, but this is when I really lost all trust.  Of note, there is neither 504 nor IEP in place as of today. We called them out on multiple improper acts; all of a sudden last week they started saying that my kid needs 504 vs. IEP. I have now educated myself about both to a certain degree. I have a couple of large concerns: (1) right now he is feeling better, and he does not need help with instructions - but this may change very fast; (2) even more concerning, 504 does not require parents’ participation. I am afraid they will bound my child to wheelchair and refuse to allow him to group settings on their own demise regardless of what I or his doctors say. I don’t know how many good days he has - hopefully a lifetime, but that’s just hope. So, I really want him to be able to live while he can and not be isolated because school is trying to minimize their liability. All insights would be very much appreciated!

[Carolyn Rowlett]

First, I am very, very sorry for what you are going through.  I wish the best for your son.

Second, I get the feeling that there is "disconnect" between the school and the parents.  They started putting restrictions in place without your knowledge and tried to get medical information improperly, and you "called them out" for their acts (totally get it!).  I'm wondering if an in-person meeting with the people who are making these decisions would help.  I would email the principal and ask for one.  You could explain what your hopes are for your son in the school setting, ask what information they need from you and his medical team, ask what their concerns are, and insist on better (and direct) communication.

I understand your concerns with a 504 Plan, but it sounds like as of now he would not qualify for an IEP.  You do not have to consent to an evaluation for a 504, but I'm not sure you will be able to avoid this in the future.  Even though parents are not required members of a 504 team, it is the rare school district that does not include parents in such decisions.  They also have to consider the opinions of his medical team which sees him on a regular basis.  They cannot just put him in a wheelchair unless the evaluations show a need.  Every restriction they place on him must be backed up with data.

Bottom line, as I'm sure you are aware - by law, your son is entitled to the least restrictive environment that allows him access to the educational setting.  This is NOT about what is convenient for the school.  I would start out "nice" because that really is the best path for getting your son what he deserves and needs.  But know your rights.

[JSD24]

It is best practice to include parents in the 504 process.  You need to sign off on a HIPAA waiver for the school & medical team to communicate beyond the basics - I think they can ask if they are his doctor & that's about it.  Oh, they can verify written info that was provided to them too.

If the 504 isn't right, it's a civil rights violation and you can file a complaint with the Office of Civil Rights should this happen.  W/o an IEP or 504 in place, the school shouldn't be restricting your child from anything because he's a gen ed student.

In the world of CYA (cover your a$$), the school should be documenting the info they have that supports the restrictions they are putting on your child.  This should be part of his records & under FERPA, you are allowed to look at these records.  If you want to know why something is being restricted, ask for their data.  If you find errors in their records, you can add clarifying info.  Ex:  they are having him in a wheelchair for hours every day, you can get a note from his medical team as to when this is appropriate.

As an aside, brain surgery will often result in issues similar to a TBI (traumatic brain injury) even after he stabilizes.  Students can have an IEP for TBI.  I hope he continues to only make positive progress in his recovery and goes on to live a long and happy life.