My son is 5 years old, with moderate hearing loss due to incomplete development of the cochlea. He attends kindergarten at our neighborhood school in a mainstream classroom. In addition to his hearing loss, he also has a tracheostomy. He is normal intelligence, and his speech and language are at close to age level, but he has some speech intelligibility issues due mostly to the tracheostomy but also due to him hearing sound poorly.
During his preschool years, my son had a single Oticon Ponto Plus worn on a soft band. The district issued him an FM system for use in school (Inspiro with Roger X plug in receiver) for preschool. His speech comprehension and sound articulation dramatically improved with the FM system, since he was able to pick out more of the soft letter sounds during “learn to read” lessons. My son upgraded to Phonak Sky V 70 P bilateral behind-the-ear hearing aids over summer vacation. Our insurance paid for the new hearing aids, but not for integrated FM receivers. The hospital audiologist advised that we should request for the school district to issue integrated FM receivers so that we could purchase and use a Roger Pen system at home. The cost of the Roger Pen system is about $1100, and we are willing to pay for it out of pocket because it seems really awesome and useful. My son has lengthy daily breathing treatments due to his medical conditions, which create a ton of background noise. He’s generally bored and annoyed during his breathing treatments, because even with hearing aids on, he can’t really hear or understand speech around him.
The district audiologist states that the district has a policy of issuing only plug-in Roger X receivers for use at school, and that they won’t pay for integrated FM receivers. Our current IEP didn’t request the use of an FM system for home use, because the old hearing aids didn’t have that capability. Now that the new hearing aids have the capability of home FM system use, we want to use it.
Does a DHH child have a right to use an FM system at home? If a child has the right to use an FM system at home, does the district have to provide integrated FM receivers? Do we have the right to demand one style of FM system (the newer Roger Pen with Roger 18 receivers) over another system (the older Inspiro with Roger X). If we end up having to purchase the integrated FM receivers out of pocket for use with our home FM system, is the school then obligated to use the technology we purchase? We’re willing to prioritize our purchases to spend some money on a home Roger system because we think it will help his hearing overall. If the school says we have to leave his Roger X receivers at school, then we will also have to purchase two integrated Roger 18 receivers for home/school use, which would add another $2000 to this scheme.
I applaud your efforts in advocating for your child.
My background is in clinical audiology and I am not a legal expert, so please know that this response should not be considered legal advice.
The following website, although it is written for the State of New Jersey, addresses many of your concerns: http://www.drnj.org/atac/?p=63
To summarize, the school is only required to send the FM/Roger system home if it is specifically related to a goal on the IEP. You could work with the IEP team to try and add this. Additionally, the school is not required to purchase any particular FM system or receiver, if there is an alternative (i.e., cheaper or more universal) system that serves the same function or enables the student to successfully achieve their IEP goals.
If you do purchase the integrated Roger receivers on your own, you would need to discuss with the school audiologist whether your son would be able to use them at school or not.
I hope this helps and I wish you the best in navigating the IEP process.
My son was implanted at 2 years of age with a CI. He is now 3 years old. He was diagnosed with Auditory Neuropathy Spectrum Disorder and he is severely to profoundly deaf. They describe his disorder like a static radio most of the time it’s static but every once in a while he hears something but not enough to form speech or understand what a sound is. The CI was not a guarantee that it would work, but as my husband and I are both hearing and no one else in the family with hearing loss we figured we should give it a try. We have also been signing with him since he was 15 months old. Our son is now in school, and at his last IEP meeting we were told that they probably don’t have the funds for an interpreter or enough children to start a deaf class. I don’t know how to get my son the education he needs! I just don’t think it’s fair. He is very smart, very visual, and has an amazing memory. What can I do and how can I fight for my son’s education??
You indicate that your son has auditory neuropathy and received a cochlear implant at age two. Some children with auditory neuropathy will benefit from cochlear implants, but most will need sign language for the very reason you described—auditory neuropathy produces static rather than a clear auditory signal, making it very difficult or impossible to access spoken language auditorily, even with a CI. It sounds like you have been doing everything right for your son by providing sign language since he was 15 months old.
I was sorry to hear that the school’s IEP team decided not to provide sign language for your son. Your son is entitled to a free appropriate public education (FAPE) under the Individuals with Disabilities Education Act (IDEA)—the federal law which governs every public school district in the U.S. For deaf students, the IDEA specifically states that communication needs, including the need for sign language, must be considered by the IEP team when making educational placement and services decisions. Furthermore, an IEP team may not use “lack of funds” as a reason not to provide interpreting or any other special services required for him to obtain FAPE.
The IDEA grants parents of children with documented special needs, including deafness, the right to appeal an IEP team decision. Every IEP team must, by law, provide parents with written procedures for appealing an IEP team decision. You should request the written procedures from your school district immediately and file an appeal according to the procedures described in that document.
In my experience, school districts often do not understand the communication needs of deaf children. However, you can and should advocate for your son through well-established legal procedures. In so doing, you will also be educating the school district – paving the way for future families with deafness—as well as for your son. I encourage you to be confident and persistent, because your son has the right to a free appropriate educational program, which in his case should include sign language.
My 8 yr old daughter has sensorineural profound deafness. She’s using hearing aids and is at par with her hearing friends in mainstream education. She’s a bright child with immense understanding and grasping power. English has been her second language here, her first language was her mother tongue.
We are relocating to USA this year. Her language skills in English are comparatively low, say 30-40% of a hearing child in US. I would like to know the basic expectations of school from her so that I can make her understand the needs and prepare her accordingly. Likewise, what will be the process to take her admission in mainstream education school?
Depending on where you move in the United States, there are two services I would seek. First, the staff at the school will need to meet with you to decide if your daughter is eligible for special education services. During that meeting, the school will review your child’s hearing levels from her audiogram and her school performance up to this point. If they request to do any testing, ask them to complete the testing in her first language and in English. This will give the school team an idea of how to proceed with her education. If you believe that support from a teacher who specializes in working with children who have a hearing loss would benefit your daughter, let the school know that you want a teacher of the deaf and hard of hearing at the meetings. A teacher of the deaf and hard of hearing has been trained to work with children who have different types of hearing loss and who communicate in different ways. This teacher can work with the school and the classroom teacher to make sure that your daughter is getting the education she has a right to under the US law. Second, I would ask the school for access to a teacher who specializes in teaching students who are learning English as another language. This teacher will have been trained specifically to work with students who have first languages other than English. This teacher along with the teacher of the deaf and hard of hearing can work with the mainstream or general education classroom teacher to make sure that your daughter’s education is optimized. In my personal opinion, this team of teachers bringing their knowledge together would be a great start for your child.
As a hearing parent of a deaf child and an active participant in advocating for the best academic and social placements, it is very concerning to see so many videos, articles and social media feeds “bashing hearing parents ” and their choices in raising their children. When this happens, it makes it very difficult to trust that the “deaf community” has my child’s best academic and social growth at heart versus pushing a hidden agenda. In addition, deaf of deaf (deaf families) seem to exclude other deaf /hard-of-hearing children with hearing parents creating at times hostile learning environments.
Is there any current research addressing the social emotional impact on deaf/hard-of-hearing students based on the aforementioned ? Are there longitudinal studies that measure the overall mental health/wellness of these students as they meet academic/vocational goals as well as balance their basic family system and the negativity on social media regarding having parents who are hearing?
When looking at post-high school academic options, what are colleges/universities specifically for deaf/hard-of-hearing students doing to ensure the overall wellness of these students? I would be concerned to send my child to a school that supports this type of propaganda.
If you experience anybody “bashing” parents for the decisions they make, they’re obviously coming from the perspective of their own anger and frustration. Parents need to make a plethora of decisions about raising and their deaf child and are bombarded with opinions, facts, and suggestions from several different communities; educational, medical, audiological & speech, deaf education, etc. Many of these “opinions, facts, and suggestions” lack support in the relevant research and, as you know, there are no “right answers.” There are only decisions that one can make in the best interest of the family’s needs and goals. The field of deaf education has yet been able to discover the optimum educational path and communication method to optimize psycho-emotional development. Don’t ever let anyone’s criticism of your decisions have anything but a negligible impact on you.
I am looking for research that states that standardized testing is not the best measure for D/deaf and hard of hearing students and why. Can you point me in the right direction?
In a word, “no.” You might find someone who states that, but whether or not the research supports that claim is a different issue, and it is far more complicated than it might appear. The questions one should be asking are “To what extent are standardized tests (achievement? psychological? driver’s license?) valid for DHH learners? Which DHH learners? In what content areas? What accommodations are provided, if appropriate, and how effective are they?
You can find answers to some of those questions, as they pertain to academic achievement, in these two articles:
Cawthon, S. (2010). Science and evidence of success: Two emerging issues in assessment accommodations for students who are deaf or hard of hearing. Journal of Deaf Studies and Deaf Education 15 (2), 185-203.
Qi, S., & Mitchell, R. E. (2012). Large-scale academic achievement testing of deaf and hard-of-hearing students: Past, present, and future. Journal of Deaf Studies and Deaf Education, 17, 1-18.
Hello, I am a Teacher of the Deaf and Hard of Hearing. The current district I work for is closing the Deaf/Hard of Hearing Center Middle School and High school programs. There has been discussion around national trends being a main reason for the closures.
Do you happen to have any national trend data or know of these “national trends” that are closing center programs? There has not been any evidence provided and our current state continues to have center programming among the large school districts at the primary and secondary levels.
Another reason for the closure, is due to the reduced numbers of students being served in center programs due to early intervention and technology. Some students need to be served in center programs so why are educators assuming that, because of the reduced number of students, we have enough reasons to justify closing programs? Do you happen to have any insight to share and/or resources that would be valuable to this topic?
Specialized schools and programs are able to gather personnel, resources, and students in one place, enhancing school districts’ capacity to appropriately serve students.
However, you are describing what is becoming a common phenomenon – specialized schools and programs around the country are closing, and students are being sent to schools where they are the only deaf or hard-of-hearing individual. To a large extent this is driven by Federal education policy. The U.S. Department of Education encourages States to set goals increasing the amount of time students with disabilities spend in “regular” classes. This is done through the Department’s oversight of Federal funds. States must submit to the Department a State Performance Plan (SPP) and Annual Performance Report (APR). The SPP/APR displays data on the environments in which children are educated. (Indicator 5 covers children age 6-21, and Indicator 6 addresses preschool children.) This is a “numbers only” count – in other words, it is a simple count of where children sit, it does not address the quality of the setting for individual children.
In recent years the Department has started to look at student outcomes in order to evaluate States in a process know as Results Driven Accountability. However, the results are not cross-tabulated with setting for a particular child, so it is not possible to evaluate the impact of the setting on student performance. The Department frequently cites research that shows that “inclusion” settings are best (for example, Policy Statement on Inclusion Of Children With Disabilities in Early Childhood Programs September 14, 2015), but these studies don’t include deaf students.
The Department of Education has recognized the need for educational settings to support the language and communication needs of deaf and hard of hearing students. It has stated:
“Any setting that does not meet the communication and related needs of a child who is deaf does not allow for the provision of [a Free Appropriate Public Education] and cannot be considered the [Least Restrictive Environment] for that child. Just as the IDEA requires placement in the regular educational setting when it is appropriate for the unique needs of a child who is deaf, it also requires placement outside of the regular educational setting when the child’s needs cannot be met in that setting” (Letter to Stern, September 30, 2011).
The school district must continue to ensure that all students are receiving the services, supports, and placements outlined in their Individualized Education Programs. Further, it may be required to provide parents Prior Written Notice. This must be given whenever a school district changes the educational placement of a child or the provision of FAPE (34 CFR §300.503).
There is another law in place to protect language and communication access in schools: the Americans with Disabilities Act (28 Code of Federal Regulations § 35.101 et seq.). That law requires public schools to ensure that students with disabilities have an equal opportunity to participate in all school activities. It mandates that schools provide auxiliary aids and services to ensure “effective communications” for persons with disabilities. This is defined as “communications that “are as effective as communications with others.” The Departments of Justice and Education have issued guidance on schools’ obligations to provide effective communications and how IDEA, the ADA, and Section 504 of the Rehabilitation Act work to protect the rights of deaf and hard of hearing students (Frequently Asked Questions on Effective Communication for Students with Hearing, Vision, or Speech Disabilities in Public Elementary and Secondary Schools, November 2014).
School districts should ensure that they are basing their decisions on the best interests of their students and families. Parents and educators who are concerned about a district’s actions should talk to their district representatives. If they believe their or their children’s rights are being violated they may wish to invoke the procedural safeguards under IDEA (34 Code of Federal Regulations § 300.500 et seq.), which include filing a State complaint or a due process complaint.
I have a 6 year old with CIs, implanted at 11 months; he has perfect speech. We have a IEP meeting soon, and they want to discontinue speech support. He is mainstreamed and has difficulty staying focused in the classroom. Any help at all we can get for his meeting, we would greatly appreciate. Currently we have a ToD an hour a day five days a week, an educational Interpreter, and right now speech 1 day a week for a half hour in a group setting. That is what they are looking to discontinue.
Speech Language Services are not only limited to working on speech production. Our scope of practice includes vocabulary development, pre-teaching concepts, teaching advanced language structures, phonological awareness skills, comprehension of language as it relates to processing text and creating text, executive functioning including memory, judgement and pragmatics. It is rare to find a deaf child who has skills in all these areas that develop without careful intervention and monitoring. Speech-language clinicians are intrinsic to optimal development of these skills, and this is the tack I would take in this meetings. [Try to find an advocate who can support this in the IEP meeting and make sure it is written into the program.]
I really want to know if the Informed Consent for a Clinical Trial is only read by a deaf person or there is an interpreter during the procedure who is able to help the volunteer to better understand what is written. Is a Video Interpreting (relay) service (VIR) usually employed or a Computer Assisted Realtime Transcription (CART) service? Do you think that a platform with VIR service could help the deaf person’s understanding?
Essentially, the answer to your question is “it depends on the individual.” For most deaf individuals, at least in the United States, reading an appropriately-worded informed consent document is sufficient. It is the responsibility of both the researcher/medical professional and their institutional ethics review panel to ensure that the document is, indeed, “appropriately worded.”
For deaf individuals with lower levels of literacy, of course a sign language interpreter would be helpful (either live or via VIR). The kind of interpreting, in that case, also would need to depend on the individual, because there are deaf adults (as well as children) who do not have fluent sign language skills. Those who are low-language, for example, would need very different kinds of interpreting than those who are skilled in Italian Sign Language. Deaf individuals who are “oral,” also might need support with an informed consent document, either through further explanation or more simplified language.
I am a hearing, fluent ASL signer who is considering adopting a deaf child from a developing country. I have very limited information about his health history or hearing beyond the fact that the child “does not hear or speak at all.” The child’s estimated birth date is March 2012 and he has been living in an orphanage since being abandoned by his birth family for a couple(?) years. He is reported to imitate other children well and generally be content and happy. There does not seem to be any exposure to signed language and I assume zero early intervention or auditory assessments made. I am very aware of the importance of early language exposure. I can provide a signing environment probably from age 4.5 onward. I am wondering if you would see any benefit to his overall cognitive, social-emotional and academic development in also pursing a CI? Is it possible for a child to “catch up” from such a late start? I know that amongst older Deaf people this situation of coming to language late is not as unusual as it is today. My hope for my child would be that they would be able to become a critical thinker, I don’t place as much value on speech skills as I do on the possible boost to English literacy that might come from auditory input a CI could provide. I am an interpreter and I am trained as an elementary school teacher (though I don’t teach deaf kids) .
The benefits that you seek from a CI are not usually achieved by children whose families have not invested significant resources into auditory-based instruction (speech perception and production) from the time of implant, throughout the school years. That investment entails placing a high value on acquiring spoken language and being willing and able to commit time and energy toward the process. On the flip side, however, there is no guarantee that investing a high level of desire and effort will have the payoff that you wish for your child.
Your child’s auditory brain areas will not be fully mature until his early teens. It remains open to learning, even learning language, although those areas may be allocated to visual processing without acoustic stimulation prior to about age 7. So, you are working with a long list of unknowns, inevitable in the situation of adoption, especially when a child is born in a developing country. For example, you believe your child to be deaf. It may very well be true that your child is deaf; or maybe not. Even a moderate conductive hearing loss could account for apparent lack of hearing (thereby, ruling out a CI); or there may be an anatomical abnormality of the outer or middle ear, possibly reversible; or auditory neuropathy affecting neural transmission of sound to the brain. Or something else.
Among the unknowns is the child’s experience in utero and during birth; his early nutrition, diseases, and accidents; his genetic makeup; and whether he met nonverbal developmental milestones. There is no information about his speech motor skills. It would be informative to learn whether he attempts to communicate his needs (grunt, point, gesture, pull an adult to a relevant place). While he is said to be content and happy and imitates other children, does he engage in play with others? Does he recognize and comprehend symbols (for example, match pictures to objects)?
A CI is not a magic bullet. At the outset, with an uncertain history like your child’s, even CI candidacy may be difficult to ascertain. Following audiologic and development assessments, there is a requisite trial with a well-fit hearing aid. If a CI is obtained, benefit will be measured in small steps, focusing on gradual growth: whether the child accepts the new input, shows increased environmental sound awareness, turns to familiar voices, demonstrates changes in vocalizations. Many small steps precede the desired big gains. Catch-up, were it achievable, is very unlikely to be demonstrable early on. Your plan is to provide a signing environment, and speech appears to be of indeterminate value. Without a plan to provide consistent auditory (spoken) stimulation at home and at school, the CI will be significantly hampered in the facilitation of spoken language learning and positive effects on literacy and academic performance. Parents who consider a CI for their children often do so with the intention to get the most out of the tool. They speak to their child. They provide instruction that will help the child to speak. They stay the course through the school years.
Importantly, handle the transition from orphanage to home, first and foremost. Take time to tend to the emotional attachments with your child as much as you focus deliberately on his cognitive and academic development. Your child should feel safe and loved, without pressure to perform, as you establish communication through your relationship. Gently, consistently, reward all efforts to communicate. Initial stimulation should not be overwhelming. Your commitment to parenting will support your child’s learning. Be prepared to begin at the beginning, as if welcoming a new baby, with silly songs and first picture books.
Then, find the best pediatric audiologist in your region and make an appointment for a complete audiologic assessment. Follow up on all recommendations without delay. Filling in the unknowns will confirm your thinking one way or the other regarding speech and move you from a hypothetical answer to a personalized response on CI candidacy and estimates of CI benefit. If you choose a CI or a hearing aid, ensure consistent use and daily wear time. Minimize background noise in the house and at school. Focus the child on listening. Model spoken language and emphasize sound before vision. Use “listen cues” and wait time to establish listening attention. Then be expectant. And be patient. Keep in mind that hearing age will be more relevant than chronologic age.
My son got a cochlear implant at the age of 2 years; now he is 6 years old and he talks well. Will he be capable to learn the ISCE syllabus in school?
The ICSE (Indian Certificate for Secondary Education) is a national entrance examination in India administered by the Council for the Indian School Certificate Examinations. Neither the cochlear implant nor your son’s speech will be the determining factor in your son’s studying for and performance on the ICSE. How well he does depends on his mastery of the content in the subjects covered by the syllabus and his academic/cognitive abilities. Your son may need additional support for this effort, just as he might for his regular school subjects. But, his hearing loss should be no more of a barrier in preparing for secondary school examinations.