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Hearing impaired children need unbiased advice: implant awareness.

ORLANDO, FLA. -- Most parents do not receive unbiased information about options for their children with hearing loss, Donna Sorkin said at the annual meeting of the American Academy of Otolaryngology--Head and Neck Surgery Foundation.

Pediatricians who know what parents of a hearing-impaired child may face can advise and support parents if they have to argue with schools to get what their children need, said Ms. Sorkin, vice president of consumer affairs at Cochlear Americas, Denver, and a long-time advocate for appropriate educational options for hearing impaired children.

"Once children are identified with hearing loss, they are fed into the early intervention pipeline," Ms. Sorkin said. The type of at-home intervention they receive may skew what type of education strategy they follow, which may not be the most appropriate. These home visits vary.

"Interventionists are not physicians," she said. They may be representatives from schools for the deaf or from the local department of health. Parents with higher education will do research and get information from physicians and audiologists outside of the early intervention system, but less educated parents are more likely to rely only on information from the home visit.

The Individuals with Disabilities Education Act (IDEA) is a statute, which means that any jurisdiction that receives federal money--including any public school in the United States--must follow the guidelines set down by IDEA. The IDEA is carried out by states and local schools and entitles any child with a disability, including those with hearing impairments, to fair and appropriate public education.

One part of the IDEA applies to infants up to age 3 years. Under this part, an early interventionist comes into the home as soon as the child is identified with a hearing impairment. Care may include hearing aids, listening therapy, family training, instruction in sign language, and even transportation to those services. However, if the interventionist has limited experience or a biased point of view, parents may not understand the full range of options available to their children.

Another section of IDEA covers children with educationally significant disabilities up to age 21, including those with cochlear implants.

"This is the part of the law that addresses the accommodations that schools provide to children," Ms. Sorkin said. Public school districts are responsible for providing the services needed to give the child a fair and appropriate public education. If the parents feel that the service is not appropriate, they have the right to ask for additional services or more the child to another school.

The law says that if a child can be in a mainstream school setting, schools should try to comply. Children and parents are entitled to periodic IDEA hearings, and if parents disagree with what the school district has decided for their child, they can enter into an IDEA hearing to contest it.

However, parents often feel intimidated, Ms. Sorkin said.

"I've been involved in IDEA hearings before, and the experts are on one side of the table and the parents are on the other side, and they are often very hesitant to contest a school's decision. But many schools don't offer the [full] range of options for children, and parents may not know that they have the right to ask for an option offered elsewhere."

The most important considerations are the specific needs of the child. The word "need" is in the law, Ms. Sorkin said, so she encourages families to use that word. "Rather than saying that 'this is what I want for my child," say that 'this is what I need for my child,'" she said. That means looking at the unique aspects of the child and the parents' preferred mode of communication. If the parents prefer their child be in a normal school setting with a cochlear implant, rather than in a class for students with other disabilities or in a sign language program, schools should be responsive.

The law also states that children with disabilities must have opportunities for peer interaction. Parents who choose to have their children communicate by sign language may interpret this as interaction with other deaf children, while parents who want their child to be aural and communicate with spoken language will interpret it differently. They may want their children in a mainstream class with speaking children.

In a survey of 600 families with hearing-impaired children, 29% said they had difficulty accessing proper educational services for their child, Ms. Sorkin said. Although that is the minority, 63% said that their child's school didn't fully understand the needs of a child with a cochlear implant.

Approximately one-third of parents said that the school would not provide audiology services, and 24% reported that the school wanted the child to use a different communication method from the one the family preferred.

Pediatricians and clinicians can provide some guidance to parents by telling them that they should not be pressured to teach their child sign language if their child is aural and has an implant, and that schools should provide services in keeping with use of the implant, such as a room with good acoustics.
Types of Schools
Attended by
Children With
Cochlear Implants

Home school                                 2%
Private oral school for hearing impaired    8%
Mainstream private school                  10%
Public "center based" school                23%
Mainstream public school                    57%

Note: Survey of 600 families of
children with cochlear implants.

Source: Cochlear Americas

Note: Table made from pie chart.
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Title Annotation:Clinical Rounds
Author:Splete, Heidi
Publication:Pediatric News
Geographic Code:1USA
Date:Feb 1, 2004
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