There is no stopping us.
Maddox WILL conquer this world!
We recently changed health insurances (not by choice) and Maddox is scheduled to receive half the therapy next year that she received this year. Big bummer. If we want to pay out of pocket for the other half, we are looking a 30,000 of unanticipated costs. That is 90,000 over the next three years. I can’t help but think about the new addition we could have put on our house, the vacations we could have taken, the pool times three we could have installed, the new SUV (and gas) that would have bought us. To be honest it is taking me a while to give up my materialistic lifestyle dreams and face the reality of the life I never planned for.
But.....I’ll get there.
Anyhow, with that depressing insurance information I tried to be proactive and spent hours talking to various representatives. I spoke with social workers at the hospital, staff from Michigan works, emailed the governor and other staff in Lansing, looked into grant funding, reapplied for state assistance, worked with the staff at the Health Department, Social Security, Early Head Start, and two Insurance Companies trying to find Maddox an individualized health care plan that will meet her needs and allow us to invest that 90,000.
Seriously, I am going to vent on whoever created these insurance plans. They wrote them specifically for adults. Yes, 30 outpatient visits a year would rehabilitate a shoulder but 30 visits a year does not help a child learn the most important skills in their entire life like walking and talking.
Can you believe every single person I contacted led me to a dead end.
Every single one of them.
Those that know me, know that dead ends are not options.
If I arrive at one, I start chopping trees and making way for a new route because I don’t accept no for an answer.
I think this is the second time in my life that no has to be and being ok with it is like trying to pull healthy teeth. I just can’t do it.
I was talking to my dad the other day about how we were not going to be able to afford to get Maddox all the therapy she had been getting and that she needs. He made a comment that this situation is really tough, and he had been through it once before when trying to get the best hearing care for me.
(Sorry dad, I have to quote you, it is all part of the how the story came to be - and you should know better than anyone else that a stop sign means....I go).
He said, “Don’t you think we wanted to get you the very best audiologist when you were growing up? We did what we could, what was within our means.”
Meanwhile as he was telling me this, I was doing my famous I hear ya but I’m blocking you out trick. I kept pondering and pondering what he was saying. Nope, not gonna fly here. Nothing is outside of our means, I am bound and determined to get input from the best of the best.
In which case I have good news to share with you!!
THE BEST IS YET TO COME.
I found out in March that we have been accepted to the Trisomy 21 developmental assessment clinic in Philadelphia, Pennsylvania. This means that in August we will be evaluated by a team that specifically deals with Down Syndrome kids. Thousands of cases to refer to = research based practice. Amazing connections, I can’t wait! I have my list of typed questions already started!
In addition to the clinic, I also received a personal emailed today from a nationally known Speech Therapist named Sara Rosenfeld-Johnson. She is famous for her oral motor placement therapy techniques in which Kim (the speech therapist) has already implemented with Maddox AND we have seen results. I specifically asked to be evaluated by Sara, not one of her trained staff, and she responded with a warm welcome. Her summer will be spent near Rhode Island. My summer will be spent figuring out how to get to Rhode Island!!
East coast here we come!
I am so glad to hear that you are getting some help. Have you checked into "Crippled Childrens" Insurance. I believe it is "called special health care services" now. We used them for many years when Cory was little and they paid for EVERYTHING. We applied thorugh our local Health Dept. If oyu have not I owuld do some checking into it. There is NO reason she wouldnt qualify.
THURSDAY, JULY 7, 2011 - 08:56 AM