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Cochlear Implants in Children: Ethics and Choices

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Slightly less than half (between 20 and 25) of the 52 families we talked with about insurance-related issues said or implied that their insurance carrier paid for post-implant mapping and speech/auditory therapy in full (or close to it). In about the same number of cases, insurance companies paid for some, but not all, of the mapping or habilitation expenses. In general, insurance companies appear to be more willing to pay for mapping than for speech and auditory therapy, perhaps because they see the latter as a long-term commitment. Moreover, a number of parents said that their insurance company would only pay for speech and auditory therapy expenses after a deductible had been met, or would only pay a maximum of several hundred dollars a year; anything beyond that was the parent’s responsibility. In any case, it is clear that many of the families we talked with had to pay for much of the post-implant speech and/or auditory-verbal therapy their child received (outside of school) themselves.

[The insurance company] put a limitation on the amount of speech therapy a cochlear recipient can have. It’s not adequate to get through the year at all. And we come out-of-pocket literally in the thousands of dollars for speech therapy for our children.

Father of a 10-year-old girl implanted at age 4
and an 8-year-old boy implanted in 1996

Another family said that, after the surgery, they started paying for speech therapy themselves. However, they soon noticed that their insurance policy stipulated that a maximum of 2 months of therapy would be covered. They subsequently got the company to pay, and, as the mother of the implanted child said, once they started it I wouldn’t let them stop. I said, You can’t deny benefits based on services for a disability. The father argued: Are you telling me that you’re going to pay for a prosthesis [the implant], but you won’t pay for the training . . . to learn to use it? . . . . Is that your position? And, ultimately, the insurance company that we dealt with didn’t really have any experts who knew anything about it, and we went out and hired our own, and they filed reports, and they said, All right, we’ll try it for a year and see if she improves. Not surprisingly, the parents subsequently reported to the insurance company that progress was being made, and payments from the company have continued. Other parents also reported more success in getting their insurance company to pay for post-implant needs when the therapy is called “prosthetic device training” rather than “speech therapy.”

As noted, another post-implant issue that is of importance to many of the families we interviewed is paying for upgrading the external speech processor. Most of the children currently use a body-worn processor that is about the size of a deck of cards. The alternative is a BTE processor that is more cosmetically attractive, especially for teenagers, as well as more functional, particularly in sporting events. We asked parents if they have had any upgrades, or if any were anticipated, and, if so, if their insurance company would pay for it. In only a few cases did the insurance company pay for an upgrade or did parents expect them to. Rather, almost invariably, parents expected to have to pay for this significant cost themselves if it was not available from the cochlear implant company at the time their child had the surgery.[4]
 
4. Because of rapid changes in cochlear implant technology, some implant companies offer coupons, or other discounts, for new processors that are not ready for distribution at the time a person actually has implant surgery. In addition, if both BTE and a body-worn sound/speech processors are available at the time of the surgery, the implantee may be given both of them as part of the cost of the operation. Each sound/speech processing device must be programmed separately, however.