Deaf Children in Under-served Countries

I received an email asking for help from a mother of a little 3 year old boy who is deaf who lives in Iraq, near Baghdad. She has known that he had a hearing loss for many months but has not been able to get services for him. Why? Well, she is a Kurd and the roads are not safe for a Kurd to travel between her home to Baghdad. And Baghdad is the only place nearby where services are available. The family raised enough money to travel to India so their son could be evaluated. Travel to India is cheap. The family was told that their son has a profound bilateral sensorineural hearing loss and would benefit from a cochlear implant. They were told that that cochlear implants were very expensive, so they were given hearing aids for the child.

How can a child in Iraq (or any other under-served country) get services?

 

Mom wanted to know from me how she could get a cochlear implant for her son. How much would it cost? What services would he need? Were there funds available to help her pay for services? The answers? I don’t know, no and no.

I asked the mom how the little boy was doing with his hearing aids. She said he was not wearing them because he just kept taking them off. I talked to her about how important it is for a child to hear if we want him to learn to talk and gave her some suggestions to help her son keep hearing aids on. But is keeping aids on enough? Who will help the mom teach her little boy to listen? Who will help her teach him to talk? Are there any auditory therapists in Iraq? Are there speech-language pathologists who know about working with children with hearing loss? No. So are hearing aids enough? Can a mom help him to learn without outside help?

Cochlear implant costs

 

Cochlear implant services cost different amounts in different places. In the US, almost every child who needs an implant can get one. Health insurance covers implants for most children, and Medicaid will pay for children who do not have insurance.

But what happens to children in other countries? In poor countries cochlear implants are more difficult to obtain. They are very expensive and not covered by insurance. When I was volunteering in Vietnam, a father came up to me and asked if he should sell all the family possessed to get a cochlear implant for his son. He was already 10 years old at the time and had other disabilities. I told him not to sell his land. It was one of the most difficult things I have had to do.

Cochlear implant availability

 

In some countries, there are no cochlear implant surgeons. In some countries, CI surgery is conducted by foreign surgeons who travel into the country to provide this service. After care may or may not be available in the country.

Is it alright to get a cochlear implant in a place where there is no way to get cochlear implant programming? No. Sometimes parents believe that they will be able to travel to another country to get cochlear implant programming. Kids with cochlear implants need to be programmed on a regular basis. In the beginning, services are needed often – every few weeks initially and then every few months.

If programming is not available then how good is the cochlear implant? Would it be better if a child had a hearing aid which is not providing sufficient benefit but that can be managed locally? I have seen it happen both ways and I am not sure that a cochlear implant that cannot be programmed is a good idea.

Telepractice

 

One of the ways some of these children who live in areas where there are no services is to take advantage of telepractice. Cochlear implants can be programmed via telepractice. Therapy can be provided via telepractice. Parents can be counseled via telepractice.

Until we have services available around the world, perhaps we can develop world side programs to reach families via telepractice. Is this ideal? Likely not, but it is a great option for kids who do not live hear centers where services are available.

 

About Jane Madell

Jane Madell has a consulting practice in pediatric audiology. She is an audiologist, speech-language pathologist, and LSLS auditory verbal therapist, with a BA from Emerson College and an MA and PhD from the University of Wisconsin. Her 45+ years experience ranges from Deaf Nursery programs to positions at the League for the Hard of Hearing (Director), Long Island College Hospital, Downstate Medical Center, Beth Israel Medical Center/New York Eye and Ear Infirmary as director of the Hearing and Learning Center and Cochlear Implant Center. Jane has taught at the University of Tennessee, Columbia University, Downstate Medical School, and Albert Einstein Medical School, published 5 books, and written numerous books chapters and journal articles, and is a well known international lecturer.