ST LOUIS DYSLEXIA PROJECT

[sirlbeck]

Today is another day that we saw yet another child whose school referred them to the pediatrician for a dyslexia diagnocis. This child has an IEP, has already been extensively evaluated by the school psychologist. The school councelor has referred the child to Dr. Whitson for a dyslexia diagnosis. Are we missing something? We so desparately want to make a difference and make a change in the right direction for these MANY children so that our society will not miss out on the benefits of what they can bring to the table! Please read our story.

I am the office administrator and clinical director of a very busy primary care pediatric practice. My life partner is a private practicing pediatrician. I have dyslexia. My eight year old daughter has dyslexia.

Dyslexia can not be diagnosed by visiting a pediatrician for a sick visit. This is a complex diagnosis that requires the expertise of a neuropsychologist. Dyslexia is not diagnosed by one simple test over a 30 minute time frame with a quick visit to the local pediatrician. It is diagnosed after a series of tests usually administered over several hours. Most of the time the testing may be needed for several hours over a two or three day period.

I share the frustration of every parent that has been referred to our office to see their pediatrician by their school because the teachers suspect dyslexia. As professional primary care providers we feel handcuffed. We feel helpless. We feel frustrated. How can we get this child the help they need? Why aren't our schools, who are in the business of teaching children, able to give these children the resources they need to get help?

I had the same initial roadblocks when seeking a diagnosis for my daughter. The school (private not public) just thought she was slow. Her pediatrician had no resources. Only after another parent informed me of a special school in St Louis by the name of Churchill Center and School was when I called Churchill Center and School for help and direction. They provided me with the name of a local pediatric neuropsychologist. At which time I immediately called to set up an appt for evaluation. The appt was split into two separate days and I believe the sessions were 4 hours each. In order to get the testing performed, I had to pay up front $2500.00. I was more than happy to do whatever was needed to get help for my child. I came up with the money. Finally.... we had a diagnosis and could move forward. So was public school the answer? After much research, reading, discussion, more research, talking to parents of kids with like minded children and even more research and self educating we knew that the public school system would not meet our daughters' needs. We knew that Churchill was the answer. 2012-2013 is our daughter's first year at Churchill. Unless you are fortunate enough to be a "trust fund baby" it is a struggle for any parent to pay for this school, however very much worth every penny. We are so thankful to have this school in our area! Again, we are soooo very lucky! Our daughter is getting, in our opinion, the best intervention possible and we know that she is destined to succeed! She no longer cries every night with homework. She is beaming with confidence now. (She had ZERO confidence prior to starting Churchill). Her little spirit has been restored more than my wildest expectations!

This takes me back full circle to the primary care pediatric practice I administrate. What if the child is covered under medicaid insurance? Even if the parents can afford to pay up front for an evaluation, how do most parents afford $35,000/year tuition for grade school? What if they do not have a car? Many of our patients depend on public transportation just to visit our office.

So our practice has 3500 active patients. If the statistics are correct (10% at the least and 25% at the most), 350-875 of our patients are faced with a form of dyslexia. Have I mentioned that we practice in the city and provide care to a payor mix of 80% Mo medicaid and 20% private insurance? How do we help these children? How do we re-instill the confidence and restore the spirit in so many children that are not as lucky as my sweet Ava?
Thank you so much in advance for your insight and help. With Sincere Regards, Sara Irlbeck, RRT, AE-C