Up to the age of 3, Karissa was part of the Early Start Program, a program which provides various services to children with special needs. Through this program, Karissa was able to receive occupational therapy twice a week, physical therapy once a week and speech therapy. She was also a part of a once-a-week mommy and me class as well as getting a home visit from a special ed teacher every week.
The Early Start Program is an amazing program, especially for those that may not have insurance or cannot pay for services. We have wonderful insurance that does provide these services, however, they were not able to meet Karissa's needs for weekly, or even twice weekly services, which was one the reasons for enrolling Karissa in the Early Start Program.
As Karissa's third birthday was rapidly approaching, I was starting to become frantic in trying to figure out what we were going to do. Once a child turns 3, all services provided by Early Start are stopped and the child is then transitioned out of the Early Start Program and into the school district. While we were still able to get OT and PT through our insurance, Karissa was only able to be seen once a month, if we were lucky.
The school district only provided speech therapy in a group, which would have been completely useless for Karissa. They also wouldn't provide OT for reasons that are still completely unknown to me and wouldn't provide PT until a child turns 5. HUH? Are you kidding me? I was ready to go to battle with the school district once Karissa started back in the fall. Obviously, that never happened. Lucky for them because they would have had one angry parent on their hands. Actually, they already did, but I will save that for another post.
So, our only other option became getting services through CCS, California Children's Services. We submitted the paperwork and had the neurologist submit what was needed. The outcome?: SERVICES DENIED. EPILEPSY NOT A QUALIFYING CONDITION. Um, excuse me?
I got on the phone with the CCS people and they were so indifferent. I told them what services Karissa needed and that it had been well-documented that the services she was previously getting were helping her in her development. They had the documentation. They were clearly aware that the services she had been provided were helping her in her development. I remember the lady saying "Is your daughter autistic? Does she have Down's Syndrome? No? Ok, well, we can't provide your daughter with services then. Epilepsy is not enough of a diagnosis." At that point I was tempted to ask the MD to lie for us so Karissa could continue to receive services.
What? So my child has to be autistic? Or have down's? Wait, are you even remotely aware that there are children I know with autism and down's that are functioning at a MUCH HIGHER LEVEL than Karissa? That they will continue to be provided with services for as long as needed (or not needed)? I know I probably shouldn't say it and will probably make some of my readers angry, but I really have a lot of animosity in regards to autism. I am trying really hard to keep my filter in check here, so I will stop with that.
Oh, and if you were wondering, Karissa's skills did indeed decline once services were stopped. Towards the last month of her life, we noticed that she wasn't able to walk as well and that her balance was off. It was heart-breaking to see.
Regardless of anything I have just said, I feel that part of the problem is a lack of education and awareness regarding a disease that can be debilitating, and in some cases, lead to death. It is hard to go to battle with people who happen to think that epilepsy is not a big deal. Or, with those that think that people with epilepsy are normal except that they may have a seizure from time-to-time. But can you really blame them? Sadly, they just don't know any better.
There is so much that needs to be done in regards to not only education and awareness, but research and finding new treatments, and even a cure. The disease's toll has been overlooked, and its research underfunded, far too long. And, allowing those with epilepsy to receive services that may help them have a better quality of life, while important, is just the tip of the iceberg.
5 years ago