why no IEP?

There have been so many difficulties in receiving services for my kiddos. Everything has been a hurdle. Our mental health providers were always trying to sign us up for additional services. They were always surprised that the girls did not have services in school. We applied for disability for our one kiddo and she was turned down even though she had qualifying issues and diagnoses. We reapplied with an additional diagnosis and received approval, but we did not change the section on challenges and needs for support. It is absolutely bizarre.

We could not get an IEP (individualized education plan) through her school even though they were calling us weekly to complain about her behavior. They were upset that she was such a disruption to the other students and wanted to know why we could not control our child while she was at school. Basically their complaints were the definition of why a child receives an IEP. When we put our oldest in day treatment for the first time, the staff was shocked to hear that she only had a 504 plan and not an IEP. The behavior she exhibited at day treatment was less than what the school experienced and the day treatment administration began the IEP process immediately.

There is no academic difference between the 504 plans and IEPs in my experience. However, in practice, IEPs seem to get a response from teachers much more easily. Teachers would complain about my girls and I would have to ask them to please read the 504 plan because their complaints already had plans in place for them to utilize. With the IEP, there seems to be a lot less back and forth with “please read the plan”. IEPs just seem to speed up the process of problem solving between our home and the school.

IEPs are also supposed to give you a lot more access to school programs, but my oldest is at a smaller school without a lot of resources to begin with. My youngest just got her IEP approved and starting next term she will be assigned to several support programs and personnel. I am hoping to see some large gains going forward. I will keep you posted.

Before the pandemic, I had the worst time trying to get the school resources my children need to be successful. They suffer from intense amounts of anxiety, attention deficits, lack of social skills and just generally seem to be missing several executive functions. After the pandemic, the process was so effortlessly smooth. It was like I had changed school districts. It was actually quite unnerving. I was ready for a fight to get an IEP for my youngest because the one for my oldest was so difficult to approve. My oldest is the one who struggles the most, while my youngest just skirts by most difficulties. Now they both have IEPs.

I wish I could tell you there was some trick to getting an IEP, but really it was about the personnel in charge. If the personnel want to fight every step of the way, that is what is going to happen. If they want to be helpful and get things moving, then that is what you can expect going forward. Watch for staff changes! Try again if the staff changes or when your children progress to a new school.

One thing that really speeds up the process is to get outside testing. Having testing done outside of the school will make less work for the school whose employees are typically overloaded and struggling to get all their tasks done by the deadlines set by the government. Testing can be expensive, so please work with your insurance providers before you start. Find out how much they will pay and which medical providers they prefer. These tests can typically take several days to conduct, so getting on the wait list as soon as possible is important. Your child will need to be present for one or two appointments, which can last 3-5 hours at a time. They like to break it up so the child will not get worn down. You and your partner (if you have one) will also have at least two appointments. One appointment will be before they meet your child to go over concerns that you have about your child. The last appointment will be after your child completes the testing and they are able to analyze the results. This process takes 1-2 weeks depending on the setup of your medical provider. Then parents will have a meeting with the provider to go over the results. The provider will write up a lengthy report (20-30) pages that will go over the testing, results of the testing, their diagnoses and their recommendations.

Our insurance paid for the majority of our most recent testing and the entirety of our previous testing. We went to an out of network provider last time because we needed to get autism testing and it is really difficult to get autism testing done. You will typically be on a waiting list with your insurance’s preferred provider for a year. Since our kids were older and had not been diagnosed previously, most preferred providers would not even schedule us. The one preferred provider who would see us was booked out for almost two years. As we had already had some psychological testing done in the last couple years, going to a provider out of network was relatively cheap out of pocket. It was around $3,000 and we were able to submit a claim to our insurance to recoup half of that cost.

Outside testing is definitely worth the money! If the school did the testing, you would not get such thorough testing. Nor would you have any medical diagnoses. You would also not receive a long appointment to go over results, recommendations and diagnoses to get more services outside of school.

I know it is a long, arduous problem to get resources for your child. However, nobody else will do it for you. Use what resources you have to determine what your next steps should be. Once you have a list of steps, you can prioritize your actions and start making slow, but eventual progress. If you would like me to go over first steps in another post, just let me know. Until next time!