Military Special Needs Network

Proudly Supporting all Military Families with a Special Needs Dependent

I’d Like a Guidebook, Please!

Fridays_FriendsDo you remember a moment in your life where you know the information being told to you isn’t believable?  The person giving you the information is convincing, but something isn’t sitting right in your gut.  Deep down, you know you have to do something, but what?  I remember that moment vividly.

I was driving home from an appointment in Cary, NC with Ian fast asleep in the backseat.  I had just been told by a pediatric neurologist that Ian needed a corrective cranial re-shaping device and that our insurance wouldn’t cover it.  His head was asymmetrical, his ears misaligned, he was suffering chronic ear infections, and a helmet would help.  There was an “if he doesn’t get this device…” moment in that appointment.  If Ian didn’t get the re-shaping device, his doctor was unsure of the long term negative impacts and a potential corrective surgery would be in my son’s future.

What a lousy appointment.

As I was driving back home the “a-ha moment” happened…and I realized that I was going to change the Tricare policy on cranial re-shaping helmets.  I was going to get Ian the helmet he needed AND change a Tricare policy.  Yup, that’s what I was going to do.

I had no idea what I was doing because no one hands a guide over to you on “how to change a Tricare policy.”  Upon reflection, I would have really liked it if someone had given me that guide book.

I had no one to talk to about this because I didn’t know anyone that changed a Tricare policy. I felt alone and frustrated and of course my husband was deployed.  All I knew is that we had been given so much inaccurate information, and I was confused.   All the information that I had been told about Ian’s skull shape, Tricare policy, costs, everything was incorrect.  I wanted and deserved the truth; my son deserved the truth.

So, here are the steps that I followed and I would refer to this as my “guidebook”.

1. Research policy.  Since I was going to change a Tricare policy, I needed to know that policy inside and out.

2.  Be prepared to be heartbroken again and again.  Every time I filed an appeal, I would get my hopes up.  I knew better, but I still got my hopes up.

3.  It’s okay to cry.  It’s also okay to be angry and frustrated.

4.  Find a support group.  I found so many cranial groups on Facebook, other websites, at the Orthotics office, and it’s been nice.  You need to reach out and ask for help.  It’s amazing how many people are willing to support me in changing a Tricare policy.

5.  Know who to contact about a policy change, and don’t be afraid to call them.  I want to change a Tricare policy so I called up my Congressman and Senator.  They took my call and have been working with me for over a year.

6.  Be patient.  Like I just wrote, I’ve been working on this for over a year.  Tricare for Kids passed, but there is still more work to be done.  As much I want change to happen overnight, the reality is that it doesn’t.

7.  Remember, who you’re fighting for.  When Ian runs up to me and hugs me, I remember again and again why I’m fighting.

Something I learned:  I should have asked Ian’s doctor for the policy, both hospital and Tricare.  I was told that hospital policy didn’t allow for a pediatric neurologist appointment until he was one year and that wasn’t true.  I was also told that Tricare would cover his orthotic device, and that wasn’t true.  What I should have done was placed the burden of proof on his doctor and asked for the policies in writing.

I can’t let what I should have done rule my life though.  However, I can take what I should have done and share it with you all.  I can also thank you all for your support.

I still have a lot of work to do ahead of me, but I won’t give up.  I just keep on referring to my guidebook and I know I’ll be okay.

Written by Susan Reynolds. Susan is the founder of “Re-shaping Our Children’s Future By Using Our Heads.” Last year her son Ian was diagnosed with plagiocephaly and to help fix it, he required a cranial re-shaping helmet. Through mis-information, lack of education, and lack of medical coverage for his helmet, she decided to make a change. After talking this decision over with some good friends, and my husband, she started working on changing the Tricare policy for military families. Susan has also championed the Tricare For Kids legislation, as mentioned above, and has been nominated for Military Spouse of the Year.

Comments, discussion and insight always welcome!

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This entry was posted on January 25, 2013 by in Disability Rights, Tricare and tagged , , , .
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