Don't Risk Losing Cochlear Implant Processors When Swimming

Recently, this story was sent to us by an audiology group about one of their patients who was surfing with cochlear implants while on vacation.

A storm was brewing, and a large wave pulled off my son's entire cochlear implant processor and headpiece. Devastated, he swam in to tell me, but searching for it was nearly impossible in the strong surf. For the next 3 days while the storm raged, I went down to the shore and watched the pattern of the wind and the waves. On my family's last day of vacation, the storm had finally subsided so the I decided to snorkel near some rocks the waves had been hitting. During one dive as a wave pulled away sand from the floor of the ocean, the dad saw something red under a rock. When I swam down to investigate, I found the processor still connected to the headpiece, which was stuck under the rock! When I  pulled on the processor, the headpiece would not budge. I knew that I was running out of air and if he went back to the surface to get a breath, another wave would come and bury the device again. So, I gave one final tug which pulled the headpiece free. I returned to the surface with the entire device! As if finding the processor after 3 days in the ocean was not amazing enough, my family was astounded to see that it still worked!

This is a truly amazing story with a happy ending, but many families and individuals around the world are not as lucky. Some people clip their processor to some part of their clothing only to find it lost after being tossed by a wave, or crashing on mountain bike. Mishaps during recreational activities happen. Unfortunately, for people with cochlear implants those mishaps can be very costly. 

As a parent of a child with bilateral cochlear implants, our greatest fear came when our son participated in any activity where there was a chance he could lose his processors. We became helicopter parents even though we never wanted to limit our child’s ability to participate in any activity. As a result of this problem, we created the Ci Wear shirt.

Ci Wear makes specialty shirts designed to secure and help protect cochlear implant processor(s). It has patented pockets that include elastic bands to clip the processor to and a button hole inside of the pocket to run the sound cord under the shirt. This reduces the risk of a wave, hard fall or crash knocking off your processor(s).

If you have ever spent money on a case to protect your cellphone, then a Ci Wear shirt is for you. It is the perfect accessory for your cochlear implant processor(s), and gives you the security, comfort, and confidence to participate in and enjoy all types of activities without the fear of losing your device.

#swimming #cochlearimplants #Secure #CiWear 

IS THERE AN "I" IN IEP

By Eric Sherman

According to the Department of Education, “each public school child who receives special education and related services must have an Individualized Education Program (IEP). Each IEP must be designed for one student and must be a truly individualized document.

To create an effective IEP, parents, teachers, other school staff--and often the student--must come together to look closely at the student's unique needs. These individuals pool knowledge, experience and commitment to design an educational program that will help the student be involved in, and progress in, the general curriculum. The IEP guides the delivery of special education supports and services for the student with a disability. Without a doubt, writing--and implementing--an effective IEP requires teamwork.” 

If the IEP is designed to be a collaborative process, why are parents always fighting for their child to receive appropriate services or school placement? 

We have learned over the years it doesn’t matter what the IEP team recommends, it comes down to what the school or the District wants to offer and the parent agreeing or disagreeing with the offer.

The first time we were hit with this reality was when we were requesting more speech for our son in a very contentious IEP meeting over speech services.  Our son has bilateral cochlear implants and is on the autism spectrum.  His co-occurring disability poses a lot of challenges, so we argued our facts and reasons why more speech was needed. The speech therapist, who never worked with our son or had conducted an assessment, explained to us that our son was being offered the same amount of speech as all the other students receive.  Needless to say, we jumped on the statement claiming the IEP was not individualized to our son, but predetermined by the District. The school district agreed to the additional speech hours, but has been trying to change our son’s speech services in every IEP since. 

We have found over the years, our IEP teams have not always been made up of knowledgeable school personnel looking to develop an educational program that is individualized to our son’s needs. We’ve had to fight school administrators, who’ve never met our son or lack any understanding about his disabilities as well as school service providers, who’ve never worked with our son, then write IEP goals and suggest inappropriate services.  We’ve even had school placement offered to us, when no one on the IEP team even knew anything about the program being offered.

For the most part, schools and school districts will do their best to create an IEP for a child with special needs within the bounds of their budgets, personnel, services and programs they have available.  But individualizing a program outside those limits becomes a real fight for parents.

If an educational program is to be truly individualized to the student’s needs as the law intends, those on the IEP team (including parents) need to be fully knowledgeable and have a good understanding of the student’s disability and their needs. It is imperative for the IEP team to know about all available services and school programs that appropriately address the student’s individual need without prejudice.

As long as schools districts consider limits on what they can offer students with disabilities, the “I” in IEP will always be hard to define. Parents have to be knowledgeable advocates for their child to make sure the "I" means individual. 

Please feel free to leave a question or comment about your child’s IEP and we will be happy to respond.  The more parents share, the better prepared we are to help our children with special needs.

Cochlear Implant Experience – Leah's Story and Review of Ci Wear

Leah, who’s a bilateral cochlear implant recipient shares about her 20th Wedding Anniversary Trip to Australia and how Ci Wear helped enhance her experience.

Hello Rock Stars of the Ci Wear Team,

I must admit that these few experiences I am sharing here - would have been very different deaf.  For the two separate days that we did these excursions, I wore my Bilateral CI Advanced Bionics Neptune processors all day. The CI Wear shirt is so comfortable.

1. Snorkeling at the Great Barrier Reef - the view was indeed inspiring - the colors were awesome, almost unfathomable the diverse landscape - but the sounds!  The water, the biologists guided talks, the snorkeling-helpers! I was really glad I could hear the helpers...  When I first sat on the edge of the platform and peeked into the water, it was so clear it looked like I was on the top of a skyscraper, I thought I was going to fall right down to the bottom! I heard all of the snorkeling helpers' reassuring words and direction when they were putting on my lifejacket and directing me on the placement of how to hold my swim noodle.  They even gave me a snorkel tube with red-tape, in case my head pieces fell off and I was in distress.  - But guess what?  THE CI HEAD PIECES STAYED IN PLACE!  And it is funny now, thinking out it… I was soooo nervous about ME falling, but was never in fear that my CIs would end up at the bottom of the ocean - as they were tucked in your fabulous shirt!

 

CI devices secured in Ci Wear shirt sleeve pockets

2. THE BEST EXPERIENCE WITH CI WEAR. We did the bridge climb in Sydney! It turns out the bridge form you fill out asks if you wear Hearing aids.  You can not wear hearing aids on the climb as they will blow off your head.  I explained that I wear CIs and that I would be okay on the climb with my CI Wear shirt.  They called over the head of security and the manager of the climb-office.  I demonstrated showing them the CI Wear pockets, the Neptune clips secured to the white bands, the pockets, the wire-feed section and from the processor to the magnetic head pieces.  And then without missing a beat - I said, “And if there IS a big-huge wind that does blow the magnets off my head... - (without stopping my words, I swept both my hands against my scalp - you should’ve seen their eyes!) … they are safe and secure, as they are tethered to me, and I can simple click the magnets together and toss them in my shirt. (and there they were, my CIs safe and sound).  The manager and security chief were SOOOO impressed!  They had never seen anything like it!  They commented how very well prepared I was to do the bridge climb!  We were in the front of the group and I heard the guide, the cars on the bridge, the commuter trains, and my husband’s romantic words at the top of the bridge, and my son’s woo-hoos when we completed this incredible activity!  www.bridgeclimb.com

Feeling like you're on top of the world when you can hear "Down Under."

3. When we got home the garden was very overgrown and a part of the fencing needed repair - the shirt was great. I could work up a sweat digging around, and I could dance around to my Spotify music playing on my phone, and all the while my CIs were safe and sound!

During work secure your CI with Ci Wear

Once again, thank you and many blessings to your company!

Get out there and hear!!!!

- Leah P

If you are looking for a comfortable wearing option that secures your cochlear implants try a Ci Wear shirt.  Visit us at  www.ciwear.com.

#cochlearimplants #CIShirt #Snorkling #hearing

Cochlear Implant Equipment – Why Does It Cost So Much To Replace?

By Eric Sherman

When your cochlear implant equipment is no longer under warranty, the cost of replacement parts such as sound cords, headpieces or the processor can seem quite pricey.  Sometimes our health insurance will cover part of the cost, but generally reimbursement for parts can be minuscule to the actual purchase price we pay.  For example, our insurance valued the cost of a $125 sound cord at $11 with our plan and then stated they were only going to reimburse us at 50% of the $11, because our CI manufacturer was not in-network.

   

To most of us, the replacement costs can seem outrageous even with insurance.  But… are the CI manufactures taking advantage of us just because there is no competition for their unique parts or are there other reasons such as their warranties on equipment; R & D, etc., to justify these higher prices. Depending upon the CI Manufacturer, warranties may be 1-5 years with free replacement on parts or processors and may include shipping.

Additionally, most people accept the idea that a lot of the cost comes from R & D.  CI devices continue to evolve offering better sound quality and new features that enhance the user’s listening experience.  Cochlear implants are medical devices that fall under government regulations. Compliance to these regulations can also add to the expense.  Then you have to look at the total size of the cochlear implant market which adds to costs.  According to the National institute of Deafness and Communication Disorders (NIDCD) as of 2012 there were 324,200 registered cochlear implant recipients worldwide,  and over 58,000 in the US.

 

I’m sure the numbers have gone up over the last 4 years, but in general terms this would be considered a niche market.  Furthermore, the 3 cochlear implant manufacturers divide up the total CI market making their market share even smaller.  Due to constant changes in technology and new product offerings, existing brand models become a subset of an already small market and thus become a limiting factor to mass produce proprietary items.  With no real aftermarket for replacement parts to sell generic options, people are left to pay the higher price from the manufacturers or search online to purchase parts from another person.  All of these factors seem to play into the higher cost of replacing parts for cochlear implants, but consider the replacement cost when the item is not under warranty. 

Like many families we’ve replaced our son’s processor, sound cords and headpieces numerous times while under warranty.  Most often our daily activities might cause these sensitive devices to fail.  For example, a child is sucking or chewing on their headpiece or sound cord, a processor getting damaged during an activity because of too much moisture from sweat or being knocked off the body.  These sensitive devices will fail and need to be replaced.

Think about this, your smartphone stops working within the manufacturer’s warranty period because you caused physical damage to it, like dropping it in water or cracking the screen. The manufacturer is not going to replace it, unless you’ve paid extra for an extended warranty. Yet cochlear implant manufactures know how important it is for you to hear and they usually, without question, provide you a replacement while under warranty regardless of how many times you request a replacement.

Given the advantageous warranties and the responsiveness of the CI manufacturers, the cost of replacement parts may not be that outrageous. Unfortunately, it is an unexpected expense and admittedly I complain about this as well. However; the cost may not seem as bad if you think about it in terms of what it would be without a warranty. Let’s hope cochlear implant manufacturers continue to support their CI recipients by maintaining or providing longer term warranties on their products. 

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IEP PREPARATION: CRITICAL INFORMATION YOU NEED

By Eric Sherman

If you are a parent of a child with a disability (e.g. hearing loss, autism, dyslexia, etc.) most likely you are receiving or will be receiving services from the school through an Individualized Education Plan (IEP).  As a parent, you are an important part of the IEP team and the process to develop the best educational plan that meets your child’s needs.  

Individualized Education Plan (IEP) meeting can cause a lot of anxiety for people, especially if you are anxious to get services in place to help your child at school. Far too often, parents will attend meetings unprepared without the proper information to be a productive participant in the development of their child’s IEP.

While at an IEP meeting, if you let the school present reports and goals to you, you are setting yourself up for a long and a potentially stressful experience.  Depending on your child’s disability the information provided can be daunting and tough to process often leading to a very unproductive, sometimes combative and emotionally draining meeting. 

As a parent, I got defensive after first hearing my son’s assessment reports. Instead of focusing on how to help create the best education plan to benefit my child, I was angry and arguing about what was being reported about my child.

Picture from Schoolpsychologyfiles.com

Often parents go into an IEP meeting trying to guess what the school is going to present…this is a big mistake.  As a parent, you have equal rights under the law to be an active participant in shaping your child’s education plan. Too many parents go to IEP meetings without information regarding their child’s educational needs. 

Prepare yourself; if it is an initial IEP or an annual review, you have the right to review present level performance reports and any assessments, as well as request suggested goals from service providers prior to your meeting.  These goals will need to be discussed and agreed to at the IEP meeting.   

We request the school to provide us with our son’s reports and suggested goals, at least 5 days prior to the scheduled meeting.  It is customary for the IEP team members to contact us in advance to discuss our son’s present level of performance and thoughts about goals.    For us, this has been the easiest and most efficient way to create the best education plan for our son. 

Here’s a version of an email I’ve sent, copying all the service providers, requesting information:

Dear {school administer},

For our child’s upcoming IEP review {date}, we request copies of all assessments, present level performance reports and suggested goals prior to our meeting.  This information will help us prepare and engage in a constructive manner that will help the IEP process move more efficiently.  Generally, there is a lot of information presented at our son’s IEP meeting and having this information (at least 5 days in advance) will help us get through the meeting in a shorter period of time.

We invite anyone on our child’s IEP team to contact us with any questions.  We can be reached by email or phone. We look forward to receiving the requested information as soon as available or at least 5 days prior to the scheduled IEP date.

Thank you for your help in this matter.

Sincerely,

By requesting this information prior to our IEP meetings, we’ve been able to move through the IEP process more effectively. This has enabled us to spend more time addressing appropriate goals and services and less time on reading and processing reports.   In many cases, the suggested goals provided prior to the meeting were appropriate for our child.  Thus, we were able to move on to goals and services that we felt needed to be discussed further.  Other times, the reports and suggested goals forewarned us there was going to be an issue with particular services. 

IEP’s can become very adversarial and stressful, especially if you feel you’ve been blindsided by the school.  Being alerted to possible issues, allows you time to investigate a solution and to discuss with the IEP team or it prepares you to look at your options if there is going to be a disagreement.

One of the reports and suggested goals we received prior to the IEP alerted us that the school was engaging in inappropriate and unprofessional behavior that violated our parental rights.  We made certain that this behavior was well documented at the IEP meeting in case we needed to go to due process.  To become more informed and learn the specifics to what we did, please click here and we will email part 2 of our story to you.

Remember YOU are an essential part of developing an appropriate education plan for your child.  Requesting reports and suggested goals, prior to your IEP will help you save time; keep you focused and better prepared to discuss your child’s educational needs.   It may alleviate some of the stress and anxieties that are associated with IEP’s.  It has certainly been helpful for us.

#SPED #IEP #Hearingloss #autism #specialneeds

Accessory | Smartphones | Mobile Device | Cochlear implants

Mobile and Hearing devices shouldn't stop you from activities when you want to stay connected.

According to Pew Research, 90% of adults have mobile devices.  Many of those

Cochlear implant in sleeve pocket

adults like to stay connected or listen to music during different activities.  A smartphone, MP3 player or hearing device, such as a cochlear implant processor can be cumbersome and uncomfortable to wear depending on the activity and the accessory needed to use the device.

The concern is always how to secure your device without the risk of dropping or damaging it. Armbands, belts, clips or pouches can be uncomfortable and still allow for cords to be snagged and ripped out of the device or off your head.

Ci Wear's patented design secures and integrates your device into the shirt keeping you connected - eliminating uncomfortable accessories and flapping cords that can cause damage to a device or potential injury.

  

Ci Wear shirts offer you the added security & comfort to use your device anywhere.

• Sleek looking sleeve pocket with elastic band to secure device
• Inner pocket opening to run cords under shirt to eliminate flapping cords that can be annoying or get snagged
• Collar loops keep cords to the back of your head and allow for rapid replacement if dislodged
• Excellent wearing option for waterproof devices during water activities.
• More focus on your activity and less on your device

If you're struggling to find a functional, appealing and comfortable wearing option for your device when working out. Visit www.ciwear.com.

#Fitness #Running #IPhone #Samsung #Music

MORE IS NEEDED TO EDUCATE CHILDREN WITH HEARING LOSS AND AUTISM SPECTRUM DISORDER (ASD)

By Eric Sherman

In its 2009–2010 Annual Survey of Deaf and Hard of Hearing Children and Youth, the Gallaudet Research Institute estimates about 40 percent of children with hearing loss exhibit another disability and notes the prevalence of Autism Spectrum Disorder (ASD) to be 1 in 59.^[1]  Early intervention is critical for the development of speech, language, communication skills and learning.  Some families are fortunate to discover their child’s hearing loss at a young age, so an early intervention can be implemented to help their child stay on track with their hearing peers.  What happens when you put your child through a cochlear implant surgery, spend years of AVT or speech therapy and it seems your child is making very little progress?

This was the case with our son.  Two years of AVT, after receiving a cochlear implant, it was becoming increasingly frustrating to find our son was nowhere near his hearing peers in communication and language skills.  We knew language development could be a long process, but something else was wrong.  Our AVT thought it best to seek additional medical evaluations to see if there was something else prohibiting our son’s language development.  After having evaluations done, our son was diagnosed as being on the Autism Spectrum or having ASD.  Having a child with hearing loss takes lot of work and commitment by a family, add autism to the mix and it is like trying to solve a puzzle without knowing what pieces are in play.

With intensive behavioral and speech therapy over the years, our son has done well.  He has become more verbal and can certainly communicate his needs and wants.  What is difficult is unlocking the doors into his learning style.   There is this blurred line between his autism and hearing disability.  When our son has difficulty doing school work; we are always questioning whether he is hearing the information, does he have a problem processing the information or is he just not interested in the material because it has no real meaning to his everyday life.

Our son has been lucky, over the past 3 years, having a teacher who is very creative and skillful in teaching and engaging her students in interesting ways.  Unfortunately, we have had DHH teachers, audiologists and other service providers struggle to help our son because of their lack of knowledge, training or willingness to learn more about ASD.

It’s clear from our experience, our school district is in need of more information and training of how to educate a child with a dual diagnosis of hearing loss and ASD.  They seem to address the disabilities individually as oppose to collectively, and how they may impact a child’s overall education.  We have a school audiologist who wanted to create a goal for our son where he tells his aid or teacher when his CI processors are not working.  This is a good goal and skill for a child with hearing loss.  Add autism to the mix and the goal may become very complex and difficult to achieve. 

A child with ASD may have to be taught what it means for their processor not to be working and then trained what to do after they determine they are not working.  Furthermore, generalization of whether the processor is “working or not working,” “broken,” or “on or off” could be confusing and difficult to understand.  Our son would consider his processor being “on” if his headpiece was attached to his head.  Also, a child with autism might like the silence and prefer not to notify anyone their processors are off. 

The dual diagnosis of hearing loss and ASD has been documented for the past 20 years; however, research and clinical guidelines on how to identify and teach young children with this dual diagnosis are sparse.^[2]  School professionals and educators need more tools and training to better equip the growing number of children afflicted with ASD and hearing loss.  Both Advance Bionics and Illinois State University have done work in this area addressing this issue and calling attention to the need for better diagnostic tools, early intervention and training of education professionals. Significantly more needs to be done!

More about Ci Wear

Ci Wear is a patented specialty shirt designed to secure cochlear implant processors or other mobile/hearing devices, adding a layer of protection to prevent wires from being snagged or entangled.  Shirts are manufactured in the USA and are available in youth and adult sizes. www.ciwear.com.

References:

1. When It’s More Than Hearing Loss
2. Autism and Hearing Loss: What You Need to Know to Help Your Families 

Government Run Health Care – Possible Consequences For Cochlear Implants?

By Eric Sherman

The following was a post I saw online from a CI parent, from another country, which has universal health care and it got me wondering what could be the possible consequences for cochlear implant users if a universal health care system was implemented in the United States:

“Our government funded system holds one contract only with another implant company - therefore blocking AB from our market. No insurance cover for implants, so its government funding or private. We implanted AB because we had to pay private. I know our country blocks users from accessing some clinics due to wearing AB and not Cochlear. A lot of politics at play here.”

Our recent attempt at using Medi-Cal to try to purchase CI equipment really opened our eyes to how one of our government’s health care programs runs in this country. 

When needing to order headpieces, we were told that it could take up to 90 days to receive approval from Medi-Cal.  Around the 90^th day, we were informed we needed a case number to receive an authorization.  I spent additional weeks trying to find out a case number.  When I finally reached the Nurse Case Manager, she said she had no record of my son ever receiving a cochlear implant.  My son has been in the system for 11 years.

My son qualified for Medi-Cal because of his severe hearing loss and the program was used as a secondary insurance to receive his cochlear implants.

 

The nurse asked for a recent audiology report, so we sent our son’s last audiogram.  The nurse then informed us the audiology report was not acceptable and that they need to verify my son is deaf and has cochlear implants at one their approved facilities.   

According to the Board of Audiology, there are 34 Audiologists in the United States who hold a Cochlear Implant Specialty Certification.  Our son’s audiologist is one of them.  A simple phone call, from the case nurse to our audiologist, probably would have been enough to provide confirmation that my son was deaf and had cochlear implants.

To receive any benefits under Medi-Cal, you need to see a Medi-Cal provider.  There are only two Medi-Cal provider locations in Los Angeles where an audiologist could conduct an audiogram to confirm our son’s diagnosis.   UCLA was one of the facilities, so the Case Nurse set up an appointment for us. 

The UCLA audiologist was surprised they were being asked to do an audiogram on a CI child to confirm they had no hearing.  They happily did the test wrote up the report and submitted it.  We got a case number submitted it to purchase the headpieces and to this day we still don’t know if Medi-Cal paid for any portion of the headpieces…and it has been almost a year.

Our experience and the comment from someone living with a government run single payer system made me wonder what would happen here in the U.S. if single payer government run health care system was implemented:

• Would the government drive down the cost for cochlear implants that only one manufacturer could afford to deliver products to meet government price requirements?
• Could one manufacturer lobby for exclusivity for their devices?
• Would there be enough ENTs to choose from to do the surgery in a timely matter that would accept the government’s reimbursement rates?
• Would there be enough audiologists to choose from who accept the government’s reimbursement rates to activate and service cochlear implants?
• Would a universal health care system inspire new innovations by manufacturers if they already had a secured government contract for their device?
• Would a child miss valuable language development time waiting for an approval to receive a cochlear implant or even getting the needed equipment in a timely fashion?
• Would we be sacrificing quality care for costs?

These are just some important questions to consider when examining a possible government-run health care system.   

About Ci Wear

Ci Wear shirts are used as rash guard/swim shirt in the water or as a high-performance shirt on land. The shirt features raglan sleeves and flatlock stitching for added comfort and flexibility. The shirts are made in the USA and sell directly to consumers via online store. Available in adult and youth sizes. For more information visit www.ciwear.com.

#singlepayer #cochlearimplant #insurance 

CI WEAR FOUNDER RECEIVES PATENT FOR SPECIALTY SHIRT TO HELP DEAF SON-

Can Benefit Many Active Individuals                                                   

LOS ANGELES, Calif. (February 9, 2016)-Ci Wear, LLC. (www.ciwear.com) an apparel company focused on creating active gear for the hearing impaired, announced today the United States Patent and Trademark Office issued US Patent 9,242,093 for a specialty garment used during physical activity to conceal a hearing device and its wires to 

Shirt can be worn in all environments including underwater

protect against entanglement and dislodgment. This proprietary shirt design reduces the exposure of hearing devices such as cochlear implant (CI) processors,  smartphones and MP3 players; and their prospective sound cords/headphones. By integrating the device into the shirt, this adds a layer of protection from tangles and snags that cause loss or damage, especially during activities in tough environments such as  surfing, skiing, water parks, soccer, rock climbing and basketball.

              

"The idea for Ci Wear came from watching our son swim with his waterproof CI processors," explained Eric Sherman, inventor of the Ci Wear shirt. "We noticed our son spent a lot of time tending to his processors and headpieces, and not enough time playing. We wanted to find something our son could wear that improved his experience in the water and not be a hindrance."

By incorporating the hearing device, the user could slide their CI processors or any electronic device into the sleeve pockets, thread the cords through the shirt, and enjoy any physical activity without the need to make constant adjustments for comfort and protection of equipment. This patent is an important component of Ci Wear, differentiating its clothing from other apparel, especially in the area of active wear for individuals who use hearing devices. Ci Wear is focused on enhancing the users experience. Parents of hearing impaired children have expressed their appreciation for a product like this because it works wells with sports across the spectrum all while neatly concealing the hearing device and its sound cord/wire.

About Ci Wear

Ci Wear shirts are used as rash guard/swim shirt in the water or as a high performance shirt on land. The shirt features raglan sleeves and flat lock stitching for added comfort and flexibility. The shirts are made in the USA and sell directly to consumers via online store. For more information visit www.ciwear.com.

#Activegear #technology #Ciwear #cochlearimplant  #ProFinderContest