Has IDEA been Interpreted Beyond Reasonableness?

Guest Opinion/Editorial, Cheryl DeConde Johnson , Ed.D. Senior Consultant,
Colorado Department of Education

A February 5, 2003 court decision [Stratham Sch. Dist. v. Beth and David P., 103 LRP 4317 (02-135-JD, 2003 DNH 022)] regarding the school's responsibility for cochlear implant mapping raises serious issues regarding the school's responsibility to provide medically-based services within the context of education. This ruling was based on the premise that the child could not benefit from his educational program without his cochlear implant being properly mapped. Therefore, by determining that mapping for cochlear implants was part of audiology services, the court ordered that the school district reimburse the parent's mileage to the mapping center (100 miles away) as well as pay their insurance co-payment for the mapping service provided by the implant center audiologist.

This action was supported by a prominent professional and parent advocacy organization, AGBell. AGBell encouraged this action by writing a "friend of the court" brief on behalf of the child and family. AGBell attorney, Arthur Ackerhalt, was quoted in the Portsmouth (NH) Herald stating: "We're very pleased with the result. This is what we advocated for when we filed the friend of the court brief. We believe it's the correct legal decision" (Feb 15, 2003). Further, AGBell clearly is supporting court actions that benefit oral children through its Education Advocacy Program. The Jan/Feb 2003 Volta Voices states the goal of the program is "to pursue test cases in order to set legal precedence for appropriate educational services" (p.4). While I believe we have an excellent relationship with our AGBell Chapter in Colorado , I do believe that this action could result in strained relations between school programs and parents in other states.

At question in this case is whether mapping is part of the medical device or a separate "audiological service".  The parents wanted audiology services on their child's IEP to assist their child in benefiting from special education. They contended that mapping services were included as part of audiology services under IDEA. Further, since the school district did not employ a "specially trained" audiologist to conduct the mapping services, the parents requested that the district pay for the audiology services as well as the transportation costs to the implant center to receive them. It is my opinion that since mapping is required for the device to function; it is part of the medical device and therefore should be the responsibility of the implant center and the parent. I have summarized several issues that must be considered in this discussion below.

Personal vs. Medical Device . Cochlear implants are medical devices for which mapping is required for the device to function. As an implanted device it is part of the child and utilized 24/7. As such, is this any different than a pacemaker required to keep a heart beating or the school dispensing insulin to diabetic children. I do not believe that schools should be responsible for mapping or maintaining the external components of a surgically implanted device. Rather, these components should be considered part of the biomedical instrument as they are non-functional without one another. And, what about providing services when school is not in session, e.g., during summer? What about infants and toddlers under Part C?

Insurance. We are all well aware of the declining coverage from insurance companies. Lack of hearing aid coverage has been particularly frustrating and even though cochlear implants are included in most policies, the coverage is often far less than the cost of the device, surgery, mapping, and rehabilitation or habilitation services. Coverage for speech therapy and other related services has also decreased significantly because insurance companies know that schools must provide these services under IDEA. Decisions such as this one further erode the insurance company's obligation to provide necessary cochlear implant follow-up. Parents should clearly understand expectations for follow-up appointments and accept responsibility for them. These provisions need to be detailed throughout the pre-implant process. Implant centers must continue to bill insurance companies. Manufacturers and advocacy groups should continue to aggressively educate reimbursement officials regarding necessary cochlear implant services and reimbursement rates. If schools provide mapping services through their audiologists, they must be prepared to bill the insurance companies for that service. However, doing so still does not negate the risk that insurance companies will view this as an educational service thereby limiting or eliminating mapping as a covered service.

Proper Function of Hearing Aids. Schools are currently required to insure that hearing aids used in school are functioning properly. For personally-owned devices, does "insure" mean the identification of problems and notification of parents so that programming or repairs can be made by the dispensing audiologist or does it mean that the school is also required to provide the programming and make the repairs?

For personally owned devices, most schools provide services that include electroacoustic analysis of the hearing aid, real ear measurements and/or listening checks. They usually perform troubleshooting services that include minor hearing aid repairs such as replacing batteries and unclogging earmolds. The common practice is to notify parents of other problems so that the hearing aid can be taken by the parents to the dispensing audiologist for repair at the parents' expense. Shouldn't the responsibility for cochlear implants be treated the same? In doing so, I believe that most school programs currently conduct daily listening checks of the implant, replace coils, and perform auditory and speech perception measures to evaluate the effectiveness of the cochlear implant. However, when problems are identified, the audiologist notifies the parent and refers the child back to the implant center for mapping or other services.

School Resources. School resources are limited. The federal government only pays for about 12% of special education costs; state and local school districts pay the balance. Therefore, this decisionputs further stress on education programs that have limited resources. If one child gets more services, another usually gets less. But if it is "the law", insurance companies, advocacy groups, implant centers, and parents know that schools must provide the service. Schools cannot deny services as insurance companies are able to do. Schools also need to be careful stewards of taxpayer money and taxpayers will not be happy to learn that schools are now required to maintain medical devices, pay insurance premiums, and function as defacto insurance policies. In my opinion, schools should not be the "payer of last resort" for costs that are not specifically tied to educational benefit. However, because most schools are not prepared to provide mapping services in-house, most will like bear the cost of sending children to implant centers.

Role of Advocacy Groups.  Advocacy groups provide parents with information and support to obtain appropriate services for their children who are deaf and hard of hearing. As a professional and parent, I have always been a supporter of these programs and continue that role as a board member of Hands and Voices. However, I believe that AG Bell is misdirected in their endeavor. While the services obtained through litigation may help individual children, they are not changing the education system in a positive way. I recognize and fully support the need for major education reform if we are to improve outcomes for all deaf and hard of hearing children, including those who are oral and who use cochlear implants. But who is looking out for the children of families who do not have the ability or resources to assure services? The employment of AVT-certified therapists and provision of mapping services will not change the system. Rather, we should be using our resources to train our teachers and therapists in schools in appropriate techniques to maximize auditory and communication development, whether it be with a hearing aid or an implant. To your credit, AG Bell does have a Program Assistance Project under their Public School Caucus that is beginning to provide this type of support. However, as an AG Bell program, it is limited to programming for oral children even though the training could also strengthen auditory skill and speech development for children in simcom (simulataneous communication)/total communication programs.

Liability. Implant centers recognize and accept the liability associated with medical devices. If schools begin altering a medical device that has been surgically implanted, what are the potential liability considerations for both the school and the implant center? I do not think parents fully understand the importance of continued monitoring and mapping through the implant center, nor do they always realize that this will be a life-long requirement for the cochlear implant to function properly. Further issues arise when families move and require services from centers where their children were not implanted. Parents must be made aware of and accept this responsibility as their own prior to implantation.

The Future. I recognize the critical necessity of appropriate mapping for children to benefit from their cochlear implants. I am in favor of schools working with cochlear implant centers to facilitate mapping services. Presently these services include device troubleshooting and sound field and speech perception assessment to determine that the implant is providing appropriate stimulation for the child and notification to the implant center when it is not. We know that distance from the center for many families is a significant barrier to adequate follow-up. However, these issues need to be addressed and solved during the pre-implant process. I do believe that many school audiologists can and will provide mapping services in the future. Before this can happen however, technology must be refined, equipment and software must be available, training must be provided, and experience must be gained. Tele-medicine for remote mapping holds promise as an important step in this process.

I also believe that mapping should not be a required service but rather one that school districts could offer should they have the resources to do so. It is appropriate for schools that specialize in programming for students with cochlear implants such as Central Institute for the Deaf, Clarke School for the Deaf, and St. Joseph Institute for the Deaf, as well as large urban public school programs, to be able to offer these services. However, most of these schools are private, not public ones. As private schools, they are able to bill insurance for these services just as implant centers do.

As of this writing, the School Board of Statham School District in New Hampshire is still deciding whether they will appeal the state court decision to the federal circuit court. The Board recognizes the significant implications of this case and has contested the issue based on principal, not as an action specifically aimed at this particular child.

I hope that each of you will also consider the implications of this case. I hope you will agree that our efforts should be aimed at improving educational services in the schools so that all of our children will have access to high quality services to support their educational program.

Editors Note:  Hands & Voices would like to hear your reaction to this court case, email parentadvocate@handsandvoices.org to express your opinion. 



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