A Portal to Success In 2004, a month after my son, Seamus, turned 2, he was diagnosed with a submucous cleft palate, a separation of the muscle in the soft palate. He had been in speech treatment through early intervention for about six months already, without progress. We saw a surgeon at Boston ... E-luminations
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E-luminations  |   October 01, 2012
A Portal to Success
Author Notes
  • Christyn O’Malley, is a registered nurse at Beth Israel Deaconess Medical Center in Boston and lives with her family in Foxboro, Mass.
    Christyn O’Malley, is a registered nurse at Beth Israel Deaconess Medical Center in Boston and lives with her family in Foxboro, Mass.×
Article Information
Speech, Voice & Prosodic Disorders / Telepractice & Computer-Based Approaches / E-luminations
E-luminations   |   October 01, 2012
A Portal to Success
The ASHA Leader, October 2012, Vol. 17, online only. doi:10.1044/leader.EL.17122012.np
The ASHA Leader, October 2012, Vol. 17, online only. doi:10.1044/leader.EL.17122012.np
In 2004, a month after my son, Seamus, turned 2, he was diagnosed with a submucous cleft palate, a separation of the muscle in the soft palate. He had been in speech treatment through early intervention for about six months already, without progress. We saw a surgeon at Boston Children’s Hospital, who opted to wait and see how Seamus progressed with speech treatment before operating.
A year later, at age 3, Seamus’ expressive language skills were at the 18-month level and he was not making any sounds other than vowels. We drove to New Jersey and had Seamus evaluated by Karen Golding-Kushner, a speech-language pathologist we found on the Internet because she, literally, wrote the book on Therapy Techniques for Cleft-Palate Speech and Related Disorders. She said Seamus had a severe compensatory articulation disorder and was substituting glottal stops for almost every other sound.
Golding-Kushner made recommendations for local SLPs, but also told us that she was using teletherapy for some sessions with another child who lived only one state away and came to the office on occasion. She said she could try to work with Seamus via teletherapy, but also said she would be happy to answer any questions the local SLP might have and help make more progress. To be honest, I was a little skeptical about using a webcam for speech treatment. I wasn’t sure how clearly we would see or hear each other through a computer.
Over the next year, Seamus had his submucous cleft palate repaired at Boston Children’s Hospital and continued speech treatment at school. We also started private speech treatment within our health insurance network with a local SLP, because his intelligibility was severely affected. The school and private SLP did their own style of treatment.
We returned to Golding-Kushner about a year later for evaluation of his progress. Unfortunately, Seamus had made very little progress in speech production, despite both surgery and “aggressive” local speech intervention. Seamus was nearly 5 years old, but his articulation testing still corresponded to an age level younger than 2 years. In the meantime, Seamus had found his own way of speaking that we had difficulty understanding (glottal stops). Golding-Kushner again made recommendations to a new local SLP. Six months later, Seamus had still not made any progress and he was still speaking in glottal stops. My husband and I decided that it was time to try telepractice.
In July 2006, we began weekly teletherapy sessions. Golding-Kushner also gave us a home program to work with Seamus daily. I remember—as if it were yesterday—working on one letter for months, trying to undo his “self-trained” way of speaking. I am in tears right now just thinking of the long road he has traveled. Seamus has such a nice disposition and is such a hard worker. He and Golding-Kushner have made a fabulous team, and his progress would have never been the same if it weren’t for her and our video webcam sessions. Within three years, he learned how to say all the sounds without glottal stops and used his sounds in conversation. He still had some “developmental” errors, such a substituting “w” for “r” and his “s” sounded like “sh.” We stopped teletherapy for a while because we thought the school SLP would be able to help with those errors. However, Seamus was still having trouble with them so we started teletherapy again.
We did have a few obstacles in the beginning. I remember losing our video connection in the middle of some sessions. Some days it happened more than others. We kept a phone line open next to the computer so we could continue working while rebooting the computer. Now, it is very rare that we lose our connection, and our sessions run smoothly. We have a computer microphone that we place in front of Seamus so Golding-Kushner can hear him more clearly. We also have a headphone that could be used instead.
We also had to wait many months until Golding-Kushner received a license to provide speech treatment in Massachusetts. She was in New Jersey and she already had seen Seamus twice in her office. But to work with Seamus using telepractice, she also needed a license in Massachusetts, which took six months. During that time, she guided us through a home program, but could not provide speech intervention to Seamus.
Another obstacle was trying to get reimbursed by our insurance company, Tufts Health Insurance of Massachusetts; Tufts denied payment because Golding-Kushner was out of network. We appealed multiple times, even through the Department of Public Health (DPH). The company working with the DPH found it was medically necessary for Seamus to be treated by Golding-Kushner and that, therefore, the insurance company would need to cover his treatment. The decision was supposed to be final and binding. The insurance company covered it temporarily, but appealed the ruling, stating that the services must be provided on an outpatient or inpatient basis or in the home. Telepractice, it turns out, was not covered.
Unfortunately, Golding-Kushner lived about six hours away from us, so weekly office visits were out of the question. As a result, we have paid out-of-pocket for years for our telepractice sessions. If we had gotten coverage, Seamus could have been seen more than once per week and we are sure treatment would have taken less time. I recently submitted reimbursement forms to our new insurance company, BCBS Anthem, and we were approved and reimbursed for eight teletherapy visits. We are eligible to resubmit for another eight weeks.
Despite the complications getting reimbursed, I honestly don’t know where we would be today without our weekly webcam connection to someone like Golding-Kushner, who specializes in Seamus’ speech disorder. We are so lucky to have this treatment as an option.
Seamus is 10 years old and just started fifth grade. His speech is completely intelligible to everyone. He has progressed leaps and bounds and continues to work hard in speech to make his sounds clearly. I am so very proud of him!
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October 2012
Volume 17, Issue 12