disability rights

"I moved from Al-Tafila to Madaba Governorate when my children had cochlear implants, “Shaher Al-Huloul said, while eyeing sadly his four children who had received cochlear implants to treat deafness.

Shaher did not know that his move to Madaba Governorate near the capital would not change the living conditions of his children, since he could not secure the costs of the rehabilitation services that would help them speak. "In Madaba, I met with the same suffering...I want to register them in a special center, but that requires money,” said Shaher.

Absence of Rehabilitation

Shaher sits with his children in the living room, repeating audio segments in front of them, moving his lips repeatedly, in order to help them speak some words and improve their ability to communicate.

Shaher says that depriving a child with a cochlear implant of rehabilitation prevents him or her from being mainstreamed in the community and amounts to an obstacle to getting into school. Shaher has three girls and one boy, all of whom have hearing disabilities and have had cochlear implants.

The eldest daughter Aya, 17, is enrolled in a school for the deaf; she has not received adequate rehabilitation services to enable her to benefit from the cochlear implant.

The denial of access to adequate rehabilitation services is not the only concern Shaher faces with his family. The costs of maintenance and replacement of spare parts create an added financial burden and worry for Shaher. "I have no choice but to borrow from banks; someone with a cochlear implant requires lots of money," says Shaher bitterly.

Shaher explains that he spends large sums on buying spare parts for his children's equipment: wires, battery cases, frequent maintenance, and the necessary updates every few years. This costs about JOD 5,000 each time, he explained. Shaher shows a number of spare parts he has already replaced, including five damaged wires worth up to JOD 250.

The battery cases are also damaged frequently, requiring replacement. Shaher points out that four of these cost more than JOD 1,000.

The government-run Prince Hamza Hospital has been the only authorized entity since 2007 for cochlear implants paid for by the Ministry of Health. The hospital has performed a total of 520 operations since offering the surgery in 2007, said the hospital director Kifah Abu Tarbush. The costs of the operation are covered by the Civil Health Insurance Fund or through exemptions, while the equipment is provided as a donation by state entities. In the private sector, the value of the device is about JOD 10,000, while the cost of carrying out the operation is JOD 13,000, according to Abu Tarbush. Royal Medical Services hospitals have also conducted over 800 cochlear implant surgeries since beginning to offer the procedure in 2003.

Cochlear implant surgeries are also being carried out at Founder King Abdullah University Hospital in Irbid Governorate. A global hearing system company has approved the hospital as a center for cochlear implants and hearing treatments, establishing it as a research center in the Arab region.

A number of private hospitals in Jordan also carry out this type of surgery. …

Hospital audiologist Maysoun Al-Samadi says that post-cochlear implant rehabilitation depends on the child's age, health condition and whether he or she has acquired language in the past.

She stressed the importance of the role of parents in rehabilitation and follow-up, but they should be guided by specific instructions to help develop children's speech skills.

According to Al-Samadi, the speech clinic is facing great pressure, as it deals with about 200 regular cases requesting services from different governorates. Al-Samadi says, "Sometimes we cannot offer more than two sessions a week for a person, but children need daily rehabilitation."

The clinic's clients are rehabilitated by two specialists, each receiving five to six children a day. They are also assigned other duties in the hearing clinic, according to Al-Samadi.

A cochlear implant consists of two external parts: one fixed behind the ear to pick up sounds with a microphone before processing and transferring it to the second inner part that is implanted under the skin behind the ear.

The inner part carries a thin cable and small electrodes are in contact with the cochlea that forms part of the inner ear. The cable sends signals to the cochlear nerve, which in turn sends auditory information to the brain to activate hearing.

Ahmad Alaeddin, 16, was lucky to get a cochlear implant at the age of six. He did not have to delay the operation until it was his "turn" in the waiting list. Ahmad underwent a cochlear implant in 2012 in an Arab country after contacting a medical institution there, but disappointment followed.

The family had difficulties in securing the cost of speech rehabilitation sessions and maintaining the device after the operation was over and Ahmad had returned home.

Ahmad underwent speech rehabilitation sessions in Prince Hamza Hospital for one month, after which the family resorted to private sector centers.

Ahmad is now studying in the eighth grade and is taught in a special school for people with hearing disabilities. Ahmad's mother says that her child's speech has deteriorated because of the family’s inability to commit to speech rehabilitation sessions as their cost has soared over time.

Ahmad underwent intermittent rehabilitation sessions for five years, before he completely stopped attending. The family was unable to adhere to the rehabilitation program because of the high cost of its sessions. "Living conditions are difficult; I could not sustain the sessions for him," said Ahmad's mother.

Ahmad's family spends JOD 50 a month buying batteries for the outer part of their son's cochlear implant. When the implant is damaged the family incurs even higher costs to send the device abroad for costly repairs.

Ahmad was deprived of hearing for a full year because of the damage to his old external device and the inability of his parents to replace it. According to Ahmad’s mother, the repairs cost at least JOD 2,700.

Ahmad later obtained an alternative external device which was provided by government-run health insurance after waiting for one year, his mother says.

Post-Implant Concerns

"We did not know the requirements and the suffering we would go through after the cochlear implant. We could not afford to send Ahmad to speech training centers because all our money had been spent and we were indebted," said Ahmad's mother, Weshah. The family also supported their second child Amir to receive an implant, compounding the costs and difficulties.

The eldest son Ahmad stayed for three years on a government wait list hoping to get a cochlear implant that would enable him to overcome his hearing disability. But delays on the wait list drove the family to borrow money to buy the equipment privately at a cost of JOD 16,000. The family received an exemption to have the operation performed free of charge, the mother says.

Ahmad underwent cochlear implant surgery when he was four, but the family had difficulties in accessing speech rehabilitation sessions.

Ahmad, now 15 years old, is unable to speak, and does not go to school like his peers.

Ahmad has previously been bullied by fellow schoolmates who stole, tampered with and dismantled the device; creating a new financial challenge for the family to repair and maintain the device.

The family spent JOD 1,500 in maintaining the device so that the child would not be deprived of hearing, according to his mother.

Seven-year-old Amir underwent cochlear implant surgery at the age of two, but suffered an internal part failure one and a half years after the operation, and had to undergo a second surgery to repair the part. .

The boy’s mother keeps a piggy bank in which she puts small sums of money whenever available to support the cost of a future rehabilitation session for Amir. The cost of one speech rehabilitation session is JOD 18, plus transportation fees that are not easily affordable.

The family also faces financial difficulties in providing spare parts like wires and battery cases, and covering the cost of maintenance, since the family's breadwinner, previously a driver, has had no income since losing his sight, according to Ahmad's motherUm Ahmad.

"We regret that the boys have had cochlear implants; we advise any person in Jordan who is not financially capable not to do it," Um Ahmad said sorrowfully.

Ellen Ghaith, 3, is still very new to her cochlear implants. Ellen had a cochlear implant in Prince Hamza Hospital about a year ago. She attends two to three speech rehabilitation sessions a week at the hospital's rehabilitation center.

Ellen's mother does not hide her concern about the future. She hopes that children with cochlear implants will receive attention in schools, especially those run by the Ministry of Education, adding that the family has no ability to pay for a private school.

The child's mother says that she monitors her daughter to ensure she does not fall or strike an object in a way that could harm her, following the doctor's instructions. "One is now concerned for the hearing aid and for the child themselves; they need special care," says Ellen's mother.

A survey conducted of 193 people under the age of 18 who have had cochlear implants revealed that maintenance was mostly the responsibility of parents. Results showed that 88% of cases depended on parents to bear those costs.

An analysis of the results shows that 62% of the total children in the sample needed to replace the external device at some point. Most managed to secure another device, while 18% repaired their old devices, according to the children's families.

It was also found that 39% of children who had a cochlear implant less than five years ago needed to replace the external device.

Legal Problems

The assistant secretary-general for technical affairs at the Higher Council for the Rights of Persons with Disabilities, Ghadir Al-Hares, confirms the lack of accurate data on the number of persons with cochlear implants and the number of those among them who have received rehabilitation services. The lack of data on persons with disabilities is one of the biggest obstacles faced by the council, she added.

Al-Hares said the council had recently signed a memorandum of understanding with the General Statistics Department to include questions relating to disability in some of the department's surveys.

According to Al-Hares, people with cochlear implants are considered disabled, as defined by Law No. 20 of 2017 on the Rights of Persons with Disabilities.

The Law on the Rights of Persons with Disabilities defines a person with disabilities as "any person who has a long-term disability in physical, sensory, mental, psychological or neurological functions that, as a result of interference with physical and behavioral barriers, prevents the person from engaging in any of the main activities of life, exercising one of the rights or one of the fundamental freedoms with independence", according to Article 3 of the law.

The Director of the Department of Civil and Political Rights of the National Center for Human Rights, Nahla Al-Moumni, acknowledged that persons with cochlear implants face special legal challenges. Even though long-term training and support is required, patients may be viewed as having no disability because of the effect of the surgery.

Al-Moumni pointed out that representatives of a group of families of people with cochlear implants had filed a complaint with the Center demanding that their children be included in the category of persons with disabilities and be able to receive the benefits that this group enjoys, including adequate health coverage and support to maintain their devices.

The complaint also requested the opening of comprehensive centers for the rehabilitation of people with cochlear implants in the governorates. The complaint asked for the training of a number of educational staff in the Ministry of Education to deal with students with cochlear implants.

Sultan Amari, a member of the constituent committee of the Forum of the Parents of Children with Cochlear Implants, an umbrella group of the families of these children, says that they have organized several sit-ins to demand a number of measures, including considering people with cochlear implants as persons with disabilities, providing and sustaining spare parts, and including cochlear implants (internal and external devices) in a free comprehensive insurance system, and providing hearing and speech rehabilitation centers in all governorates in a convenient and accessible manner, among other grievances.

The concerns expressed by the parents of the children with cochlear implants are worrying to Eline's mother, who says, "When I hear so much about the cochlear implant, and share the various stories of suffering associated with cochlear implants, I regret having given my daughter such device.” She adds, "I may not be able to be always by her side."

As for Ahmad and Amir's mother, her dreams are more modest: "We want our children to talk to express their pains, not to become like other children; our children are devastated."