Wednesday, June 17, 2015

More Prayers Answered, and How to Play the System

My last post talked about how Nathan's early start class regulations are changing, and since then, I've sent another email to the directors at our regional center and been vocal about my concerns. Other parents have done the same. We've also been praying that something would change. I didn't know what might be happening until today, at Nathan's annual meeting with his case worker from the regional center. Lots of surprises at this meeting!

Recently, Nathan's teacher did an developmental evaluation and his scores were above his age level. Now his class is supposed to be for children who are developmentally delayed. And when he started, he was delayed, just enough to qualify. His teacher warned me that regional center might cut services for him. So going into this annual meeting, I was prepared, but still not sure what might happen. I was asked a series of questions about his development, and once it was scored, he tested at 34 months for expressive language and 30 for cognitive ability. He's 30 months right now. In order to qualify, he has to have a noticeable delay, obviously! So we talked about how he might be transitioned out after 30 days and at first I was fine with this. He has improved dramatically! He is not at risk for autism or any other diagnosis. His chromosome duplication could have caused any number of issues, but it hasn't, and I am glad. But there was one reason why I need to keep him in these services, and it is a big one! This is when you have to know the system of special needs services and how they work, or Nathan would have been dropped, no question. And because of my experience with Julianna, I knew that there was more we could do.

At 33 months, a child with early start services will be given an evaluation with the local school district to transition the child to services that begin at 3 years old. This meeting is very important for Nathan because he gets speech therapy, right now through our health insurance, and it's a 40-min drive one way for me. Once he is 3, however, the therapy will be provided by the school district. Plus he will then have an IEP (Individualized Education Plan) with the district, which means he can also qualify for preschool at his same school through a special grant. I knew all of this because I've been talking to his teachers and trying to get a better understanding of how it all worked. If I were to allow Nathan to be discharged from regional center at 31 months, I would be two months shy of that important meeting. And this would delay his services, because once you are out of regional center, your child is treated like any other child in the district, and my wait time for having the evaluation for speech would be delayed, and might not have been considered as highly. So how would I get his services to continue for two more months, even though he clearly did not qualify anymore? His case worker understood where I was coming from and wanted to help me. And she was willing to help me work the system a little to get there.

I brought up the fact that my daughter has autism and receives services, and that puts him a higher risk, along with the chromosome 22 duplication. I told them that Julianna was discharged, at my request, from the regional center at 2 1/2, and it wasn't until after 3 years old that I noticed more symptoms and it then took years to get her back in the regional center. I didn't want this to happen again. I wanted to be absolutely sure that Nathan would be okay. She agreed, and noted that I requested at psychological consult for Nathan. And because these consults cannot be scheduled quickly, it would definitely put him right at that 33 month mark. Mission accomplished. The system works, as long as you know how to use it. Nathan will get his very important transition meeting before 3 years old, and there will be no delay in services. And hopefully, he will continue to attend this school at 3, assuming he gets the grant. But that wasn't all...what about the change in requirements? Would I still have to attend with him every day to qualify for the early start class?

She told me that regional center has since changed their ideas and come up with a way to transition the kids. (This is exactly what I've been emailing them about, by the way.) For the kids like Nathan who have already been attending the class, the parents are not required to stay, and they will phase out like normal. But for the kids who are just coming in, the parents will need to stay because the regulations have changed. She is hoping that this will be the final determination, though she's not sure yet. Either way, this meeting was wonderful!

I have learned SOOO much about special education laws and how to make sure my kids get the services they need. Maybe I should become an advocate?? And I'm so happy that our prayers have been answered. I'm so glad that Nathan will get what he needs to continue progressing. We are so happy to have this cute little guy! He has a bigger-than-life personality and a temper to match, but we love him!

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