I was driving away from the grade school sobbing, during what can be described as the worst day of my life. People seeing my little boy hooked to oxygen probably would think, “how could a mother of a child hooked to oxygen find a trip to school the worst day of her life?” But it was.
“Your Son Can’t Go to School”
Simply, even though I had been told some pretty crummy news before, this was worse. I had been told that my son had Cystic Fibrosis, which in the end he did not. I had been told he had Bronchiolitis Obliterans, which he did not. They had told me he had other forms of very serious, possibly fatal or life-altering forms of interstitial lung disease, and he did not. Regardless of whatever his true diagnosis was, it was something we were managing. He was always my little boy and we would manage.
But sitting in the principal’s office with the principal of the school, the day before school was to start, being told, “the Fire Marshal has issues with your son bringing oxygen into school, so we are not going to allow him to go to school,” was not manageable, tolerable, or something we could suffer through in peace.
My begging the principal, pleading with him to please let Wesley go to school, was met with a smirk and silence. I was told that they had called someone at the state level, and received permission to do just what they were doing. I reminded them that Wesley was protected because he was disabled, and that they can’t NOT enroll him (or unenroll him) because he is disabled, that this is against the law. More Silence.
We were supposed to be meeting with an entire team of people. I had even been told to arrange for the durable medical equipment company to come and bring his oxygen. Apparently that was an entire lie.
During those next few weeks, I cried a lot. I would get forms from school for my older daughter like the slips for pictures, and they would just make me cry. She would get pictures taken and he would not. My appetite was gone; I would cry myself to sleep and then wake up again and just start crying again.
I felt like my son had been sent to the back of the bus. He had been told he was an inferior human being and didn’t belong. I could not wrap my head around how the school thought this was legal and okay. I went to back to school night and saw the sign for volunteering and ignored it. I’m not bringing anything to this school to support them if they don’t let my son go to school. I avoided making eye contact with the principal while I was there. I had no desire to really ever see him again. I loved this school, but I loathed him.
But never fear, we were gathering ourselves for a fight!
Taking on the School System
My sister is my advocate and a Special Ed professor. After the meeting with the school, I was able to get her on the phone, and she started making phone calls to see what agency could help us get Wesley into school. We immediately were referred to the Disability Law Center. At first they did not want to help us. Wesley’s case is tricky since at the time he had no IEP or 504 plan. We were in the process of getting one, but the school had failed to go through the process. When I finally got through to the attorney that the school literally unenrolled him because he needed oxygen, she realized she could help.
First we appealed to the superintendent. I knew this was pointless since this was actually his decision to start with, but we went through the process anyway. He of course denied our request to enroll Wesley.
Then we appealed to the School Board. Again I knew this was pointless as they just do whatever the superintendent says, but we went through the process anyway. We got our denial letter and moved forward.
Our next step was to file a complaint with the Office of Civil Rights (OCR). The Office of Civil Rights is a branch of the Department of Education. It is free to file, and you don’t have to have an attorney. You just go online to fill out the paperwork. Within about 24 hours, they email you back, have you sign some forms, and ask you to provide as much documentation as you can by email or fax if possible. I sent every shred of paperwork we had. They arrange for a time to call you, and then an investigator and one or more attorneys call you up on a conference call.
After taking your allegations, they first have to decide if they have jurisdiction over the matter. During that time, they evaluated our compliant and decided that there were two different allegations of discrimination. These were the two basic allegations, broadly:
- The District discriminated against our son by refusing to enroll him or disenrolling him due to his disability.
- The District failed to provide our son a free appropriate public educate (FAPE) by refusing to evaluate him for an IEP.
OCR is responsible for enforcing both Section 504 of the Rehabilitation Act and Title II of the Americans with Disabilities Act (ADA). Section 504 of the Rehabilitation Act of 1973 prohibits discrimination on the basis of disability by recipients of federal financial assistance, including schools. Title II of the Americans with Disabilities Act of 1990 prohibits discrimination on the basis of disability by public entities.
Then OCR takes your allegations and starts investigating. For us, we had filed our complaint in November, and they interviewed us and the District in person in April. We met separately. Ironically, on the second day of interviewing by the Office of Civil Rights, the superintendent resigned to the school board.
We were contacted in May by OCR to let us know that the school district was interested in negotiating in this matter. One of the school aides asked my daughter if her brother was coming to school the next year. The chatter had started! We had instructed her not to say a word about her brother, so she just shrugged her shoulders, not knowing how to answer. Honestly, we didn’t know what to tell her either.
As the summer moved on, we hoped and prayed OCR would get something going. We had put Wesley into an online school program, and he finally got his work done at the end of July. As he got sick throughout the year, he would get further and further behind, so he really struggled. My stress of being his teacher, his hating being the student of his mother, and not getting to have a normal school experience was weighing on us.
Finally, we got an email on August 1 from OCR. When I called, I found out they were really going to be getting him into school!
When to Use the Office of Civil Rights
OCR is responsible for investigating any discrimination relating to the Rehabilitation Act or the ADA. Wesley did not have a 504 plan, but the ADA and the Rehabilitation Act protected him anyway. OCR does not deal with most IEP situations. If your child has an IEP and the school is not following it, you cannot file with OCR. You need to go through due process to get that resolved. However, if your child was just unenrolled or refused enrollment like our child with or without an IEP, you can file with OCR, because the ADA and the Rehabilitation Act cover your child.
Once your child is enrolled, OCR won’t deal with the IEP, but they will work on getting your child back in school. Other issues that can be filed with OCR include segregation or group discrimination issues, such as if every single child on an IEP in a district is moved to a different school, or if a school district refuses to provide gym for all students receiving special education services.
If you’re really not sure if OCR can help you or not, you can always file a complaint. They will direct you to the state if they cannot help. Again, it is free and easy to file by going to http://www.hhs.gov/ocr/civilrights/complaints/index. There is a time limit of typically 180 days from when the event took place, so don’t wait too long if something is pressing!
Going to School!
School started August 23 and Wesley was able to go! So far we have had two meetings with the new superintendent, new principal, school psychologist, nurse, bus drivers and other various individuals. They are having us change schools, not really our first choice, but we will deal with it, and I won’t have to see the smug principal who took the dreams for my son away. I’ve had a phone call from the principal letting me know she has figured out how to do lunch room, PE and Gym when it’s too hot for him to be there.
This year we hope he will have a teacher, friends, and a school picture…all those things that were robbed from us last year. Wesley will start out with a 504 plan, and then they will begin to evaluate him for an IEP, something they should have done last year and never finished, thus the FAPE issue. A school is required to evaluate for an IEP within a certain amount of time. Since they never did any evaluation, nor did they even tell us they were refusing to evaluate him by providing prior written notice, they were obligated to follow through and evaluate him for an IEP.
We have negotiated the first issue, failure to allow him to enroll in school, but OCR will continue to investigate and come to a conclusion on whether Wesley was denied a free and appropriate public education. OCR will work with the school to negotiate a written agreement in which the school commits to taking specific steps to bring it into compliance with applicable laws and regulations.
Most importantly, Wesley finally got to go to school!