Thursday, July 7, 2011

Guest Blogger: Helping to Find a Voice (The Lindsay Foundation)

Lately I find myself thinking more and more about Eslea's future. I'm not referring to graduation, friendships and other topics I often write about. More so I am thinking about her medical and therapy needs. I am blessed to have a job that carries wonderful medical coverage and thankful every time I get a therapy bill that has been paid before it even reaches my hands.
Speech therapy, occupational therapy, physical therapy, ENT, cardiologist, eye exams, and the list goes on. There is never a day I think for even a second that I would trade Eslea for million "typical" babies. She is worth every dime I spend. Yet, again, I worry about her future. More and more lately I hear stories of people with designer genes that lose coverage as they get older. Companies begin to drop coverage, bills start to mount. Eslea may not need help right now, but maybe in the future.
I depend so much on her services and fully believe that without them she wouldn't be meeting all the wonderful developmental markers.
What about other children with special needs? There are those that need services yet insurance denies coverage or well, the hundreds of other reasons why a medical service is lacking. What do they do? What will we do when it happens to us?
There are organizations out there that think about such things. They focus on our special kids and the long term care that they may need. Through donations, fundraising, and grants they find ways to help children reach their medical goals. Once such organization is  The Lindsay Foundation. This foundation is applying for a grant...a huge grant. They need it so that they can continue to help children, like ours, that need them.
For the first time I have a guest blogger. Mary Clare Tarpley is a real life and blogger friend whose family has personally been impacted by The Lindsay Foundation. I ask that you take time today to read her story and hopefully you too will feel moved to help this wonderful foundation. Your simple daily vote can mean the world to so many more children....including one like Mary Clare's son, Luke.

Finding and Funding Luke's Voice
Guest Blogger: Mary Clare Tarpley

I always thought that we had pretty good insurance, that is...up until my child was diagnosed with Apraxia of Speech and needed intensive speech therapy.  I received the first denial from UnitedHealth Care soon after my son had his first speech therapy session and  thought it was just a coding error on the submission.  6 denials and 4 appeals later, I now know that it wasn't a coding error.  UnitedHealth Care just flat out refuses to pay for any of the speech therapy that Luke needs to be able to communicate.  And before I get on a soapbox, I will get to the point.

To know that your child needs something and that you can't provide it for them is probably the worst feeling that a parent can have, a feeling of complete and total helplessness.

This is a feeling that I hope none of you will ever have to know. 

When realizing that our insurance company was not going to budge or even provide some speech therapy, I made it my mission to find a way.  If it meant that I would have to tell our story and go out of our comfort zone and ask for help, I would do it.  Pride has no place when it comes to the health and well being of your children. 

Enter The Lindsay Foundation and Laurie Hammond McMillan.  Laurie fought insurance companies for the 15 years of her daughter Lindsay's life.  She knows what helplessness feels like and after losing Lindsay, she formed The Lindsay Foundation so that no other family had to experience it.  The Lindsay Foundation's mission is to help families provide medical treatment, therapy, and equipment for their special needs children.
The first time that I spoke to Laurie on the phone I felt an instant connection.  She shared experiences with me, advice, and inspired me to keep fighting for Luke.  I think we spoke for over an hour that first night.  The thing that resonates most from that conversation was one word. 


I had never considered Apraxia of Speech to be a catastrophic, before then. 

I even tried to correct her and say that what Luke had wasn't catastrophic,

But it was...and before that conversation, I had no idea the real definition.

Catastrophic illness is defined as any illness that requires lengthy hospitalization, extremely expensive therapies, or other care that would deplete a family's financial resources, unless covered by special medical insurance policies.

My child has a neurological condition that could have a good prognosis, IF he had the proper treatment. Treatment that our insurance company called a luxury.  You read that correctly, UnitedHealth Care actually said that speech was a luxury during a phone call.  EASY FOR THEM TO SAY....they have a voice.

The Lindsay Foundation has provided a grant in the form of intensive and frequent speech therapy for Luke. 

I can honestly say that he would not be progressing as well as he has been without this therapy and for that I am forever grateful.  I may have never been able to hear these little words, if not for The Lindsay Foundation's help.

Please take a moment and register to vote for The Lindsay Foundation in the Vivint Gives Back Facebook Contest.  Each facebook account that likes Vivint can vote one time per day until August 27th.

You can read more about Luke at,
Unlocking Luke's Voice facebook page!/pages/Unlocking-Lukes-Voice/127569687314344 and


  1. the future is tough and insurance is even is a new language parents with a special needs child has to learn...and fast...from coding to if you call back you may get another person and maybe just maybe a different outcome...the "new" insurance regulations...and the insensitivity of insurance companies to saying speech is luxury...or a heart operation is optional...I am not sure many people think of health care until they need it...great post...and great info and making us more aware of others..thank you!! smiles

  2. Thanks. I did not know about the Lindsay Foundation and now I do. I'll make sure to vote. -CR

  3. It is hard enough not to be able to provide for our kids in the way that we are the ones not providing the therapies and then to think that we cannot even pay for therapies would be a great challenge. Thanks for the info. I like guest bloggers!