Issy is continuing to do well in treatment. It’s not a sprint, It’s a marathon. It isn’t easy for her, and it isn’t easy for her dad and I.
I wrote in a previous post about the company MESSA. They are currently funding Issy’s stay at the Great Lakes Center for Autism Treatment and Research. If you remember, our CMH would only pay for 30 days. MESSA came in and gave us a nurse advocate and a contact person at the company.
Our initial contact person with the company took our case to the top where a decision was made to “probably not” fund her but they wanted more information. She was scheduled to come home. Rather than allowing her to be released then possibly re-admitted, MESSA offered to pay for her care while they gathered more information. At $765/a day we are beyond grateful.
MESSA agreed to pay for Issy to stay from March 12 until March 22. During that time, I worked with my nurse case manager and gathered EVERY medical record and treatment report we had. EVERY. SINGLE. ONE. Seriously, can you imagine?
On March 22, the decision was made to hire a third party expert (from most likely out-of-state) and have him (or her) look at all of the information and make a decision. So they extended Issy’s stay until April 5.
After receiving all of the medical records, the third party expert requested a neurological evaluation. This is where things begin to take a turn.
A few years ago, we had a neurological evaluation done at the University of Michigan Motts Children’s Hospital. The expert has this in his pile of information. Why would they need another?
We decided we didn’t have much of a say, so we agreed to have an appointment be set up for Issy. It was with a neurologist who has a local practice in the Kalamazoo area. Matt and I, our nurse case manager, and staff from the center all planned on going to this appointment. Just days before the appointment, however, the neurologist backed out, explaining that Issy’s case was too complicated.
*Why would a doctor back out of a basic evaluation with a new patient? As far as I know, no one talked to him. Did he hear about Issy from all of the newscasts and newspaper stories? Did the expert contact him? Did MESSA?
*Why would an evaluation from a doctor in Kalamazoo trump an evaluation done at the University of Michigan?
I asked my nurse case manager if we could just reschedule another evaluation at University of Michigan. It’s about two hours away from where Issy is in treatment but we’ve never EVER held back from seeing experts because of the drive. (During early intervention, Issy and I drove six hours round trip for a two hour appointment EVERY Friday with our behaviorist. And I was happy to do it! I knew how lucky I was to have such an amazing program in place.) This is when the nurse case manager said that the only problem with that is it would be inconvenient for us to go back if they wanted to schedule an MRI.
*Insert the sound of screeching breaks here*
For Issy to have a test like an MRI done, she would have to be sedated. And I’m not talking about a Xanex here. She would need to be asleep. Like, sleeping beauty sleeping. So this means an anesthesiologist, needles (she is traumatized by needles). Remember the whack job that said Issy caused a miscarriage? The subsequent hospitalization was at a place not equipped to handle children with autism. They injected her with sedatives constantly. She is still traumatized by that. We all are. To do the MRI, it would mean needles, sedatives, and holding her down.
I asked both my nurse case manager and my contact at MESSA about this expert. I felt like, if he (or she) is requesting this information, I would like to know what his credentials are. Is he a doctor? Autism expert? Lawyer? Or Accountant? I was told that I was not allowed to know that information.
Not allowed to know that information.
I told my nurse case manager and my contact at MESSA that I wasn’t comfortable having unnecessary medical tests done on my daughter for “informational purposes only”.
My nurse case manager and my contact at MESSA told me that I could always refuse medical testing.
Then Issy’s funding goes away, right? It goes away because the expert doesn’t have enough information or maybe because I’m not being compliant.
I was frustrated and upset and told that to both my nurse case manager and my contact at MESSA. They both said I wasn’t grateful enough for what MESSA was doing for me and that I needed to see a therapist.
I need to see a therapist. *sigh* Do you suppose being an advocate for your child always results in personal attacks? Based on my experience, it does.
Issy’s treatment is being paid for by MESSA until April 19. We are grateful.
I’m also keenly aware that treatment can be pulled at any minute. MESSA can simply say, “our third party expert doesn’t feel this treatment is necessary or something that should be covered by MESSA”. And what can I say to that?
My life is at stake along with her entire future. This family is being held hostage by bureaucracy and red tape.
So I continue to try to get national attention for Issy. I still feel (perhaps foolishly) that if a nation is watching, she will not be denied treatment. I also feel that national attention will bring help for all of the families just like ours.
What do you think? Am I being ungrateful? Looking a gift horse in the mouth? Being unnecessarily oppositional? Or am I being a protective mom? Guarding against unnecessary medical testing and unnecessary interruptions in treatment?
Well, I’m certainly going to continue to fundraise. Now more than ever. So many of you have given. And for that we are so very grateful. We still need in excess of $130,815.00 to get her funded in treatment until she “graduates” on November 1.
Please check out our Go fund me page here: http://www.gofundme.com/2fppdc
If MESSA pulls the plug on funding, we have enough from private donations to have her stay until May 13.
I’m trying not to panic.
Also, I sincerely hope I am the LAST MOTHER THAT HAS TO GO THROUGH THIS. No mother should be told to go to therapy for a perfectly normal response to an abnormal situation.
My go to phrase is “parents should be able to find help AND access it.”
No personal attacks
No jumping through excessive hoops
Not strung along
Here is a list of the treatment extensions MESSA has given us. Each extension is a nail-biter. Not knowing if there will be an answer. Wondering if Issy has worked hard enough, if she’s shown progress, if we’ve done enough to seem worthy. And each time I let myself hope that the call will say, “we have decided to fund the balance of Issy’s treatment.” It hasn’t. MESSA has put me in a very unique hope/Hell place. Once again, I hope I’m the last mother to have to be here.
From Feb 12-26
From Feb 26-Mar 8
From March 8-Mar 22
From Mar 22-April 6
From April 6-19
5 extensions. Yay and ouch.
Thanks for reading.