Fighting for a Voice

Victory tastes so sweet after a battle hard fought.  And oh have I fought.

For the last 3 years I’ve done everything in my power to give my son a voice.  I’ve made hundreds of phone calls, attended seminars and conventions, pleaded doctors and therapists to help me, hired company reps to come to our home, and even paid out of pocket for speech evaluations. I’ve done all of this in an attempt to get a device that will allow Oliver to communicate and connect vocally with the world.  But as with so many of these quests, I have hit an innumerable amount of walls along the way.

People have told me that he was too young, that he was too disabled and that we needed to take more time to ‘evaluate his best access’.  They’ve warned me to be ‘careful not to confuse him technology.’ They’ve told me they aren’t qualified to work with someone with his level of disability or that their facility is not contracted with our HMO and all kinds of other discouraging comments and concerns.  But none of these things have deterred me.  I’ve had a gut feeling since very early on that Oliver would be able to use an eye gaze AAC (augmentative and alternative communication) device.

It wasn’t until the NAPA therapists urged me to sign him up for speech therapy there during his last intensive, that I finally got the support for which I’ve been looking all these years.  

In true NAPA style, his speech therapist, Niloo, jumped right in on day one with the most perfect eye gaze device he’d ever tried and full confidence in his ability to learn to use it.  He made great progress in a short amount of time and it became apparent that this was the device that would give him his voice.  The $18,000 price tag seemed like only a minor stumbling block to me once I heard him ‘speak’ for the first time.  From that moment, I knew I wouldn’t rest until he had full time access to this life-changing technology.

After his session that day, I spent hours on the phone figuring out if it would be covered by our insurance, running all the codes to double check the percentages, calculating co pays, researching the process by which one obtains such a device, talking with my nurse case manager about prescriptions, his CCS therapists about support, calling MediCal to determine secondary coverage, and so much more.

For the last 5 months I’ve dedicated countless hours to following up, asking questions, getting the school involved, getting prescriptions, getting new prescriptions, calling IEP meetings, pushing people to get the paperwork done, faxing, re-faxing, checking, rechecking, calling the reps, calling the doctor, calling the insurance company, calling the reps again, and on and on and on.  

After all of this work, the last three weeks have been spent holding my breath, waiting to hear if the insurance company would approve it or not.

Today, after 2 ½ hours on hold with our insurance company, I was told they’d approved 80% coverage of our device.  The words weren’t even out of the representative’s mouth before my tears started to fall. Between sobs of elation I thanked him profusely for all his help. I hung up the phone and began cheering with absolute joy. 

These moments, although rare, are so very cherished in our life.  Often months or years of work, heartache and failed attempts have gone into these battles and winning one is a feeling that I’m not sure words can describe.  

This process is not over yet, but at this point all that stands in our way is the 20% that our insurance doesn’t cover.  So my mission now is to figure out what it will take to get this through MediCal as quickly as humanly possible.  

We are so close. So very very close.  The brief moments I’ve gotten to hear Oliver ‘speak’ have been pure magic and I cannot WAIT until he has access to this technological blessing each and every day. I have already begun to learn things about my son that I have completely missed for four years, despite the fact that I am his primary caregiver and mother.  I am so excited to hear everything he has to say and to see what else will develop when he is finally given the gift of speech.  

It’s coming my beautiful boy. We’re almost there.