I Refused.
I refused to take away (for the second time) Harper’s means of communication!!! I refused to return the eye-gaze device to Tobii.
This time I drove to the congressman’s office and explained our situation in person. Please NOTE: The congressman’s office can only help facilitate a response from an uncooperative government entity. They cannot force a response to be in your favor.
Fortunately for us, the response DID end in our favor within two days of that meeting.
The Tobii Communication Device is NOW Officially Harper’s!!
Thank you Congressman Ron Simmons and the hardworking staff members you have assisting you. Without your help, Harper wouldn’t have even been given the opportunity to prove herself capable of using this device for the second time.
Harper Howard TMHP approval letter
History
January 2013: Harper received her first trial with the Digital Eye Gaze Communication Devices from both Tobii ATI and Dynavox. After three months, her opthomologists and therapists determined the Tobii device was more capable of handling her eye gaze communication needs with her Cortical Vision Impairment.
On May 6, 2013 the borrowed devices were returned and the application process with private insurance as well as Texas medicaid began.
In November 2013, after taking SIX MONTHS to evaluate Harper’s extensive file on her three month trial, Texas Medicaid decided to deny Harper the purchase of such a life-changing communication device.
At this point it had been so long, I had just about given up hope until Harper went to visit a new CDKL5 friend who had the device and when placed back in front of it, I saw her enjoy the brief moment of reading an interactive book on the device.
I took a deep breath and started the battle once again.
In January 2014, with the help of her awesome pediatrician and speech communication therapists; and Tobii funding representative, we reapplied for the device.
This past April, after 60 days of no word from Texas Medicaid (other than a call back on Friday when protocol requires a 30 day response,) I was reminded by a friend that we could approach our congressman for assistance. I called their office and within a couple of days Texas Medicaid responded with an approval for another two-month trial of the device.
This was not exactly the response I was hoping for but I was assured that if we submitted progress notes where Harper showed any sign of progress with the use of this device it would not be taken from her.
Red tape and hoops.
At the end of May (NOW ONE YEAR SINCE THE ORIGINAL REQUEST) we were told we would have to resubmit the entire request for the device. And rather than simply supply Texas Medicaid with the progress notes as we were originally informed of when accepting the two-month trial back in April, we were now asked to also include the progress notes from Lewisville ISD, speech communication therapists, Nursing Care and myself.
This meant there was a high probability the device would once again need to be returned to Tobii.
However, thanks to the help of our congressman’s representatives, the Tobii funding department, corporative therapists and pediatrician’s office the device is officially Harper’s! And yes, it was worth it.