Call To Action for a Child with a Disability

I want to share with my readers an issue that affects my family. While I usually reserve this blog for fun things, like beach activities, events along the Gulf Coast and other coastalness, it is also about the life I have. And part of my life is a child with a disability. We all have things, from time to time, that hinder our life in a temporary way, or alter our ability to do something we like or want to do at a specific time. My son is hearing impaired and has been subject to a lifetime disability; one that others with hearing issues seem to get greater assistance with.
This is a call to action because a government organization is considering a new rule that will affect hearing impaired individuals. While it may seem tragic to many, I am in favor of this rule and want to share my thoughts with you, my readers. I also want to encourage you to submit your thoughts to the government for consideration. We all have a voice; I’m using mine now for my son who I advocate for and will always advocate for.

The deadline for submitting a comment is September 2, 2014 so there is not much time.  The organization is the Center for Medicare Medicaid Coverage and comments can be made by clicking here.  Proposed ruling can be found on www.Regulations.gov.  The entire proposal being considered also includes issues not relevant to the hearing aid ruling.  The hearing aid ruling is in Section VII, Scope of Hearing Aid Coverage Exclusion.  The final ruling will be made around November 1, 2014

The issue of Hearing Aids

The Center for Medicare Medicaid Coverage is considering a new rule that would classify bone-anchored hearing aids (BAHA) as hearing aids rather than prosthetics.  This new rule would eliminate the BAHA from Medicaid and Medicare coverage and ultimately, private insurance coverage.

I am in favor of this proposed new rule.

My 19 year old son was born with bilateral atresia (no ear canal) and microtia (no outer ear).  He has had surgery to “fix” the microtia issue but will go through life without ear canals. While we have found that unilateral atresia is somewhat common, bi-lateral atresia is quite rare so his needs are specialized and difficult to satisfy.  He was fitted with an analog bone-conduction hearing aid at birth, worn attached to a baseball cap and still wears it that way. It is basically an old analog air-conduction hearing aid rewired so an oscillator can be attached and provide bone conduction.  In the mid-1990s, 2 companies were making this type of hearing aid; one has since stopped because of the competition of the bone-anchored hearing aid.  My son continues to use his original bone-conduction hearing aid.  There are not many options for how to wear it.  We have attached it to a baseball cap, which is how he has worn it since birth.  There are many situations where he cannot wear a hat, but he deals with this in various ways.  We let people know why he has the hat on and that under the protection of the Americans with Disabilities Act, he has a right to wear the hat in all situations so that he can hear.  Otherwise he would be discriminated against.  Another option to wearing the bone conduction aid is to put it on a wire headband.  It is very painful for him to wear since it has to fit tight enough as to not fall off.  He does not wear it this way. In 2005, we were introduced to the BAHA as the miracle of hearing; the best solution for him, etc.  Although quite expensive, we were able to afford it because it was considered a prosthetic.  Our insurance paid for both the surgery and the BAHA according to our plan; we paid the remainder. Regardless of the cost to us, we will always seek out the best options for our son so that he can hear well.

The BAHA did not osteo-integrate, the implanted piece fell out, rendering the BAHA useless.  Attached to a “soft band”, which the manufacturer gave us, the BAHA remained unusable because of the sound produced from interference of the band to the speaker.  Several years later, we purchased an updated version to wear on the soft band because we had heard it was an improved device and worked better on the soft band.  It was a product that could be wired to an MP3 player, a cell phone, computer or other listening device.  It had Bluetooth capabilities and would allow the wearer to hear in different situations, such as a noisy restaurant or an auditorium lecture. Unfortunately, it was not half of what was promised for my son’s hearing situation. Disappointed, it is unusable and unreturnable.

I have since met several people who have struggled through the same issue.  Internet forums contain reviews of other former BAHA wearers who have encountered the same problems of either non-osteointegration or soft band static.

I am in favor of this proposal for the following reasons:

  1. First of all, the bone-anchored hearing aid is called a hearing aid and it works like a hearing aid, aiding the wearer to hear better. Whether the wearer has a congential defect that prevents sound to get to the cochlea in a normal way or the wearer has a hearing loss, but not deafness, for another reason, the bone-anchored hearing aid assists the wearer with hearing better.
  2. A prosthetic is something that replaces what is missing, like a missing leg, a missing arm, a missing cochlea. The bone anchored hearing aid does not replace sound; it enables it, but only when it works properly. The bone-anchored hearing aid was allowed to be a prosthetic in the mid-2000s and people took advantage of this for insurance and Medicaid/Medicare purposes.  The doctors we met about this product were giddy over how awesome it was and that because it is a prosthetic, insurance will cover it.  I believe that insurance coverage meant the doctor could sell more of these and perform more surgeries and make more money. They went out of their way to both encourage and pressure us to consider this option for our son. It was the “best thing for him”.  But we found that it was not because the implanted piece (necessary for the bone-anchored hearing aide to function best) did not osteointegrate; it did not stay implanted, it fell out and the surgical point on my son’s head has since healed over.  At this point there was nothing the doctor could do to help us.  Had this been a prosthetic leg, I believe they’d have gone out of their way to make it work.  However, the option we were given was to wear it like a hearing aid.  Well, doesn’t that sound like it was a “hearing aid” to begin with?
  3. Another reason is that because of the push to get as many qualified people as possible wearing the BAHA (insurance and Medicaid/Medicare paid), it became the “best and only option” in the U.S. These were the key words I have heard from many doctors and audiologists. There are many options available in other countries that my son would like to try, but with the BAHA somehow deemed “the best”, the FDA has not approved these other hearing aids to be sold in the U.S. or have made the application process so difficult that foreign companies are not applying for FDA approval because there is little competition due to the fact that the BAHA is eligible for insurance coverage and other hearing aids are not.   This is information I’ve been given by a current audiologist.  His contact at a well-known brand of hearing aids has passed this information to us.  And for this reason, we cannot get access to these other hearing aids, nor can we get anyone to rewire an FDA approved air-conduction hearing aid so it can be used as a bone conduction aid.  By considering the bone-anchored hearing aid a prosthetic, the U.S. government has reduced the market for new products and innovation with its borders.  No hearing aid company (American or foreign) would be interested in competing for market share when the current rules make the playing field so uneven; insurance being the main cause of unevenness.  If audiologists and hearing specialists are rallying around the BAHA because it is covered by insurance, there is no incentive for innovation of hearing aids that could help the same population.

My 19 year old son is not a good candidate for the bone-anchored hearing aid. He is still wearing the same analog, air-conduction hearing aid with an attached oscillator to transmit sound through his bone (skull) that was fitted at birth. We have recently purchased back-up of the same model.  It is an old analog technology that has not kept up with innovation similar to the technology of the bone-anchored hearing aid or modern air-conduction hearing aid, with Blue-tooth capabilities and other amazing technological advances that could allow my son to hear better.  It does not even hook into a headset for school.  Until recently, there were no bone conduction headsets that the FM hearing system, used in schools, could hook up to.  I have homeschooled my son because the schools could not accommodate his hearing situation and he needed to hear what was being taught; shocking because by law the schools are supposed to accommodate everyone.  They told me there was nothing they could do. My son needs a bone-conduction aid and it is not fair to him or other Americans with his rare situation to be left behind with old technology because of an insurance ruling and a technical definition.

Thank you for reading my comments on this issue.  I hope you will consider commenting to the Center for Medicare Medicaid Coverage.  We all have something we advocate for and if this is not your issue I respect that.  Remember, though, that you have a voice for what you believe in and I hope you use it.

 

 

Advertisements

Things To Do In New Orleans For Families

My husband and I try to take the family to New Orleans every year.  There is so much to do and it is a good weekend trip from most northern Gulf Coast communities.

We’ve been to the Audubon Zoo, the WWII Museum, walked around the French Quarter and more on past vacations to NOLA.  We always combine family activities with the pursuit of good Louisiana food.  Our family owns Dixiedining.com, an award-winning Southern food and culture review website.  We basically eat our way around the South, taking in the cultural differences in each location which could include festivals, art shows, concerts, shopping, museums, zoos and more.

The French Quarter offers so much that it is fun to return to often. The shopping, art gallery viewing, French Market and the artists, street performers and musicians around Jackson Square are always enjoyable. A walk along the Riverfront, Streetcar rides to the different neighborhoods nearby and horse-drawn carriage rides offer a different view of the area.  It’s all in the name of great family fun.

 

So once, again we made our pilgrimage for 2014. Here’s a list of what we did and what we recommend you and your family do on your next trip to the Crescent City.

8 Things We Did:

1. Shopping Magazine Street: food, historical music venues, art galleries and thrift shops

One of many pieces of art you will find around the Magazine Street shopping area.

One of many pieces of art you will find around the Magazine Street shopping area.

2. Art Galleries in the French Market: our favorites were The Art of Dr Seuss, Caliche & Pao, Rodrigue Studio, and Kezic GalleryCAM01389

3. Mardi Gras World: a guided tour of where Mardi Gras floats and festivities are made

 

4. Ogden Museum of Southern Art: check out their schedule for events (music after hours) and traveling exhibits

Outside the Ogden

Outside the Ogden

 

5. Street Car/Trolley Ride: under construction in places this year so check for information before you plan your ride.  Usually great fun

6. Crescent City Farm Market: Wow, what a selection.

7. Bowling at Mid-City Lanes/Rock n Bowl: bowling by day, bowling/dinner/concert venue by night

8. Lafayette Cemetery: be sure to follow the tours. The NOLA cemeteries can be scarey and dangerous on your ownwpid-cam01422.jpg

More family-oriented things we recommend to do: Audubon Zoo, Aquarium, Riverboat ride, horse-drawn carriage ride, Civil War Museum.

10 Restaurants We Tried:

1. Joey K’s: loved the Po Boys

2. District: Donuts, Sliders, Brew: Donuts were greatwpid-cam01353.jpg

3. Vincent’s Italian: great Italian food; the boys opted for Calamari and loved it

4. Old Coffee Pot Restaurant: try the Calas for breakfast.  Other items available, too.

5. Domilese’s: Po Boys

6. Hansen’s Sno Bliz: always a line; always yummyphoto (39)

7. Pascal’s Manale: Gary and I enjoyed their famous barbecue shrimp. Kids ate calamari again. Thumbs up.

8. Cochon Butcher: So good.

9. Cafe Beignet:  2 locations. Very good for breakfast.photo (91)

 

10. Elizabeth’s: family friendly, good food

For more dining information go to Dixiedining.com. The Louisiana restaurant page is filled with tried and true places we recommend as a family. Our blog contains more detailed information on some of them.  Also, check the festival listings so you can catch one on your vacation.