Since he's been food trialing successfully, his doctor has given us the go ahead to trial the top allergen, dairy. Dairy is the number one EoE trigger but Jacob insisted, and when he decides on something there is no changing his mind. I wasn't arguing to hard with me anyway for purely selfish reasons. To be able to whip up a box of gluten free mac 'n cheese without worry instead of conjuring up some creative meal is almost blissful. It's been a few weeks, and so far he seems to be doing well.
Now on to what has been one of the many aggravating experiences I have had as a mom , obtaining an IEP (Individualized Education Plan) for Jacob. At the beginning of the school year it became clear that Jacob needed some help in school. Writing, creative writing and critical thinking was proving to be a challenge for him. He couldn't keep up in class and was becoming more and more frustrated with himself. Since he attends a private school, services are not available. We decided to turn to the public school system for help.
In 1975, Congress enacted the Education for All Handicapped Children Act (Public Law 94-142). This act was passed to support states in protecting the rights of children with disabilities.The act was amended in 1997 and is now enacted as the Individuals with Disabilities Education Act (IDEA).
The first step to getting help for Jacob was to write a letter to the District asking for him to be tested. Once you have submitted this letter a timeline has been started that the District must abide by to stay compliant with IDEA. Within 15 days, the school must contact you to set up an appointment with the Student Study Team (SST meeting). At this meeting, concerns are discussed and it is determined if and what assessments should be done. The district has 60 days from the date the letter was submitted to perform the assessments. Once all this is done and IEP (Individualized Education Plan) meeting can be held.
A child can also qualify for help under a "504 plan". 504 refers to Section 504 of the Rehabilitation Act and the Americans with Disabilities Act. This section specifies that no one with a disability can be excluded from participating in federally funded programs or activities including schooling. A disability under this section is defined a "physical or mental impairment which substantially limits one or more major life activities". This can include illness, injuries, chronic conditions allergies and learning problems. A 504 will spell out the modifications and accommodations that the child needs to have an opportunity perform at the same level as their peers. Where a 504 stops, an IEP will continue and will outline those modifications and accommodations in more detail and add to them if needed.
In Jacob's case, due to his EoE, ADHD, and Tourette's, he automatically qualifies for a 504 plan. Whether he would qualify for an IEP requires the assessments from the district. After a few days of testing, interviews with his teacher and observations in the classroom, the SST team declared that yes, indeed Jacob qualifies for an IEP. So onto the dreaded IEP meeting.
There are 13 categories that a child can qualify under for an IEP.
- Developmental Delay (ages 3-9)
- Emotional Disability
- Hearing Impairment
- Intellectual Disability
- Multiple Disabilities
- Orthopedic Impairment
- Other Health Impairment
- Specific Learning Disability
- Speech or Language Impairment
- Traumatic Brain Injury
- Visual Impairment
The 2nd IEP meeting was not any better. Although they changed Jacob's qualifying category to autism, they were still insisting that his struggles are health related. They insisted that the modifications and accommodations that we wanted were things that a teacher would already do in the classroom and didn't see the need to outline it in the IEP. What they failed to recognize is that those modifications and accommodations, regardless of how stellar the teacher or school may be, needs to be acknowledged formally in writing. An IEP would follow Jacob wherever he goes, including into college. So for him to get the help he needs consistently, no matter where he is, it needs to be stated in the IEP.
In the end, it became clear that Jacob was not going to benefit from a 504/IEP in the public school setting. Being intelligent and diagnosed with a chronic illness, despite having a learning diffiiculty, has seemed to have worked to his disadvantage. We have decided to keep him in his private school. His teacher has done amazing things with him to help him succeed and it seems to be working. She has modified his classwork and homework. We have hired a private tutor who works with him 3 days a week. He is in private speech and language and occupational therapy, paid in part by our insurance but is mostly an out of pocket expense. We had hoped that by going through the public system, some of these expenses would be taken care of by the district, leaving us with only his medical costs.
My advice to parents who are considering a 504 or IEP for their child:
1. Become educated in the laws governing this process.
2. Know your child. What are their strengths and weaknesses. How do they learn best.
3. If possible, hire an advocate.
4. Don't back down. Although the intention is help every child with a disability, the funds and personnel and stretched. If a district sees an opportunity where they can potentially avoid providing a service, they will. This is where knowing the laws and your child can help you fight back.