Legislative advocacy

I have been bitten by the advocacy bug. In 2009, I had the opportunity to attend the first ever Texas Advanced Leadership and Advocacy Conference (TALAC) conference hosted by the Center on Disability Development at Texas A&M University. During that conference, we visited the capitol and identified areas of legislative advocacy that were important to us that we might want to get involved in. Before the legislative session was over, I testified before the House Insurance Committee in support of a bill that would require insurance coverage "for the treatment of speech, language, and hearing impairment". Even though the bill never made it out of committee, it was an awesome experience and it gave me the inspiration to continue legislative advocacy efforts.

The Texas Legislature convenes for regular session every two years, so 2011 is the first new session since my TALAC experience. In the time since TALAC, I have been researching the laws that have been passed in other states, as well as considering the past effort in Texas to secure insurance coverage for hearing aids. I decided I was going to give my best effort to make something happen in Texas. If there was one thing I learned from TALAC, it's that the lawmakers do want to hear from us "little people". They are so used to hearing from the professional lobbiest and and the companies/industries that that have a vested interest in legislative changes, that is a breath of fresh air for them to see a "real person" take the time to make contact and make their voice heard.

I have started a sister blog to chronicle the efforts so I won't repeat everything here, but please, check out "Texans Support Insurance Coverage for Hearing Aids" for ongoing information on our progress.

I will summarize the issue here though:

Current law: The current insurance code in Texas requires that insurance companies offer group plan purchasers (i.e. employers) the option of purchasing speech and hearing coverage. There is no requirement as to when the employer is notified of this coverage or that they be told how much it would cost. The employer has the option of not accepting the coverage or, if they choose to add any coverage for speech and/or hearing services, to negotiate any level of coverage they wish. This assumes that the benefits representative for the employer realizes that the offer of coverage, which is typically buried in the final paperwork, is available or that these services are not already covered under a typical policy. This negotiation takes place between the employer and the insurance company; the employee is never offered the option of coverage if the employer chooses not to elect coverage for speech and hearing benefits. The vast majority of employers do not offer this coverage, even though the change in premiums is minimal.

Proposal: The proposed bill has two parts. This bill would:

• Require insurance companies to notify group plan purchasers of the offer of coverage at the time of initial quotes and bid the policy with the speech, language and hearing coverage included as an option. This would allow employers the ability to make a more informed choice as to what benefits they wish to provide for their employees. This provision, if passed as written, would apply to covered individuals over the age of 18.
• Require insurance coverage for minors under the age of 18, or those over the age of 18 if covered as a dependent for the treatment of speech, language, and hearing impairment. The coverage under this provision these services would be provided at the same rates as other illness covered under the policy.

If you are willing to join the effort by contacting your state representative or senator, please let me know!

I had an appointment with the audiologist today...

I had an appointment with the audiologist today and, while it wasn't what I hoped, it confirmed what I really already knew. I have had a significant drop. My last full audi exam was in '08, so here is how it compares (frequency: '08 result/today's result/amount of change, NMR = no measurable response):

Right ear:
250 Hz: 15 dB / 20 dB / -5
500 Hz: 15 dB / 20 dB / -5
1000 Hz: 20 dB / 40 dB / -20
2000 Hz: 55 dB / 70 dB / -15
4000 Hz: 80 dB / 110 dB / -30
6000 Hz: 75 dB / NMR / >-35
8000 Hz: 70 dB / NMR / >-40

Left ear:
250 Hz: 20 dB / 25 dB / -5
500 Hz: 25 dB / 30 dB / -10
1000 Hz: 45 dB / 50 dB / -10
2000 Hz: 55 dB / 65 dB / -10
4000 Hz: 85 dB / 110 dB / -25
6000 Hz: 100 dB / NMR / >-10*
8000 Hz: 100 dB / NMR / >-10*

*I only think these weren't any worse because they were so close to non-existent before.

So, this is the first time I have had a test where there were frequencies that were absolutely, totally gone. Before, they may have been jet-engine loud, but hey, there was still *something* there! I have known for a while that I wasn't hearing as well, but to see it confirmed in black and white is just hard. No, it's more than hard, IT SUCKS! (And I hate that word, my kids get in trouble for saying it so don't tell them Mommy used that word here, okay?)

I left the audi's office and went and browsed a bookstore for a while just to give myself time to absorb it. Thankfully, my mom had the kids so I had a rare few minutes alone, plus my cell phone battery had died, so I had a good excuse not to have to call and explain my results to anyone right away. It makes it more real when you tell someone else, you know.

We have new insurance that has coverage for hearing aids, which was one of the reasons I scheduled this appointment, to see if power aids might give me more benefit. The audi said he really didn't think they would help much more than what I was getting from the aids I had now, since I was getting fair amplification in the ranges where my hearing was still registering.

I asked about a CI and especially what he knew or thought about the new hybrids. The audi said it would be worth a consultation and suggested I call the clinic doing the trials for the hybrid CI. I am not sure I am quite ready to go that route yet, but I am closer than I was. It never hurts to gather information.

Mostly I am just tired. I am tired of being the one to make my hearing loss look 'easy', the one to make all the accomodations in communicating, the one putting forth all the effort. The audi told me those words I have heard many times that I now cringe at: "I don't 'look' like my loss". In other words, I cope really, really well for as significant as a loss as I have. It doesn't mean I hear any better, just that I have found ways to not let on to other people that I don't hear, and tonight that is not something I am proud of. Part of me just wants to leave my aids in a box and start being deaf so no one else will expect me to hear!

I am in the midst of a huge pity party and in a few days the world will be okay again, but tonight I am in mourning for all those dB's that I heard as recently as two years ago that now are no longer accessible to me, that sliver of sound between '08's slope and today's lines on a grid that means much more than just a mere pen mark. It's a slice of more consanants I won't hear, more meaning that will fly over my head, more requests for something to be repeated because I didn't quite catch that. I am mourning the connection to my loved ones, the accquaintances that might have become close friends and the people I haven't met yet that I may pass by because I don't want to trouble them with the effort it takes to communicate in my world, my not-quite-deaf-but-definitely far-from-hearing world. And today it just got a little farther...

A Proud Momma Moment!

A little background: Foster plays for his school's third grade football team. The girls formed cheer squads for each grade's football team, so the third grade girls cheer for the third grade boys. But if you have a male sibling playing football, they will let the girls from other grades cheer for their brother's team (Thank the Lord!) so that means my 5 YO kindergartener is cheering on a team with girls serveral years older and a few in between. There are three high school and middle school cheerleaders that help coach the girls and they are fantastic with the young ones! I love them to pieces but they are teenagers and don't always understand Faith's hearing loss and how it affects her (not their fault at all), but they do make an effort and I appreciate all they do. So that sets up my proud-momma-moment.

Monday Faith had cheer practice. Ella had fallen asleep in her car seat, so rather than wake her up, I let Faith out and parked where I could watch from the car and let Ella keep sleeping. Faith was at the end of the line (where she usually is because she is one of the smallest) and it was becoming obvious from her behavior that she couldn't understanding what was going on. I had a mommy-dilema; I couldn't leave a sleeping baby alone in the car, but Faith was struggling and needed help!

I was feeling bad about not being in a position to intervene when I saw Faith get one of the teen's attention. She talked with Faith for a quick moment, then I see her move Faith the the center of the group right in front of the other coach leading the practice. Faith quickly caught up on the new cheer they were working on and this momma's eye's got teary.

When Faith came bounding to the car after practice finished up, I asked her non-chalantly, "What were you talking to Baily about during practice?"

Faith answered, "I couldn't understand Shannon and so I told Bailey an' I asked if I could move an' then I could hear her better 'cause I was close to her an' then I could do my cheer!"

WOW! Faith spoke up in a group of older girls she doesn't know very well to say she couldn't hear and needed to move closer to the coach! Talk about being a great self-advocate! I was so proud! I was glad I got stuck in the car so Faith had the opportunity to do that for herself without mom stepping in.

It also makes me laugh because self-advocay goals are one thing I personally should be included in just about every child's IEP, of course they would be tailored to fit the child's ability levels and their needs. Whenever I have brought this up to our committee, I am told by some of the 'professionals' that Faith is much too young to be expected to advocate for herself. (I do have to say we have an awesome deaf ed. teacher that recognizes that Faith is capable of self-advocacy and has said as much.) I can't wait to share that little story with some of them! :)

For a person with hearing loss, the skill of being able to speak up and ask for help when you need it is not as easy as hearing people often think, regardless of age. For a five-year-old to be able to speak up is huge! One of my biggest goals is for Faith to feel comfortable and confident as a hard-of-hearing person, and this little act helped reassure me that we have at least planted the seeds.

El shaddai - God is Sufficient

Our God is so good! I am amazed by the care He takes to comfort me in times of despair. Mark was laid off from his job last week and quite frankly, I am scared to death! Then on Sunday, I was driving out to my mother's house and a small miracle happened. The drive itself was unusual in that I was driving the Mustang and didn't have kids with me. Since I was in the Mustang, the radio was on (the on/off button is broken and if I managed to turn it off, Mark would shoot me!). Because of my hearing loss, I very rarely listen to the radio since it is just meaningless noise most of the time. The only songs I can really enjoy are old songs, ones that I learned and remember from before the onset of my hearing loss. The radio station Mark usually listens to is a contemporary Christian station and I honestly wasn't paying any attention to the songs - they were all recent releases I didn't know and couldn't understand. Then a familiar melody began to play. A simple song carrying a very strong message delivered just as I was wrestling with the fear of how my family was going to survive.

You see, God knows me, He knew my fear, and He knew that I could not be comforted through the words of a new song - I wouldn't be able to understand. In order to reach through my pain, He used a song from my memory, something that would bypass my hearing and touch my heart.

El shaddai, el shaddai, El-elyon na adonia,
Age to age you're still the same, By the power of the name.
El shaddai, el shaddai, Erkamka na adonai,
We will praise and lift you high, El shaddai.

Through your love and through the ram, You saved the son of Abraham;
Through the power of your hand, Turned the sea into dry land.
To the outcast on her knees, You were the God who really sees,
And by your might, You set your children free.

El shaddai, el shaddai, El-elyon na adonia,
Age to age you're still the same, By the power of the name.
El shaddai, el shaddai, Erkamka na adonai,
We will praise and lift you high,El shaddai.

Through the years you've made it clear, That the time of Christ was near,
Though the people couldn't see What Messiah ought to be.
Though your word contained the plan, They just could not understand
Your most awesome work was done Through the frailty of your son.

El shaddai, el shaddai, El-elyon na adonai,
Age to age you're still the same, By the power of the name.
El shaddai, el shaddai, Erkamka na adonai,
I will praise you till I die, El shaddai.

El shaddai, el shaddai, El-elyon na adonai,
Age to age you're still the same, By the power of the name.
El shaddai, el shaddai, Erkamka na adonai, I will praise you till I die.
El shaddai.

El Shaddai by Amy Grant

From Hebrews 4 Christians: The All-Sufficient God (click on the link to read more)

and from another source:
El-Shaddai means God Almighty. El points to the power of God Himself. Shaddai seems to be derived from another word meaning breast, which implies that Shaddai signifies one who nourishes, supplies, and satisfies. It is God as El who helps, but it is God as Shaddai who abundantly blesses with all manner of blessings.

He is sufficient! He will provide! He will bless us if we are faithful to trust in Him! What an awesome God we serve! I hope you take a moment to watch the video and be blessed!

A Request to Blog!

I have to say, TulipGirl made my day (maybe even my weeek!) I had a comment this morning that someone actually checks my blog! Whoohoo! LOL!! I am such a bad blogger! I think about it often and then I get busy on something else. I realized that my last post was the beginning of the school year and now here we are winding down. So much has happened this year!

Chelsea did go to private school, had a rough start because of the higher academic expectations, overcame and made some huge strides, got a part in the school play, had some awesome teachers, made some friends, and now she has decided to go back to public school for her senior year. It's not what I would choose for her, but we promised her the choice if she would try private school for a year. I am proud of her for trying it and how far she has come!

Foster has had a great year. He and his best friend, G. have survived the year with friendship intact. They get regular playdates after school and he sees G. on Wednesdays when the homeschoolers come to campus for their programs.

Faith has not let the hearing loss slow her down at all! Neither has Ella! Both girls recently scored above age level on all of their language tests. I am still worried about Faith's pre-reading skills, but all I have to compare her to is Foster (not the norm! His reading scores came back at 9.o recently, yes that's a 9th grade reading level - he's only in second grade). Everyone tells me she is just fine and right on track so I am trying not to worry! Ella is communicating up a storm. Just in the past month of so it seems she made the shift from repeating things that she hear to expressing her own ideas. Now she isn't completely talking in understandable sentences, but she definitely gets her point across! There other day Faith was at Granny's and Ella and I were at our house. Ella comes up to me with the phone. "Bai(t)... Bai(t)...!" (That's Ella's way of saying "Faith", the (t) is very soft.)

Me: Faith is at Granny's, Honey! What are you doing with the phone? Oh, do you want to call Faith?"

Ella nods furiously and hands me the phone. I call explain to my mom that Ella wants to talk to Faith and Faith gets on the phone. I hand the phone to Ella.

Ella: Bai(t)? Bai(t)? Where you?

Faith: I am at Granny's.

Ella: Wha' doin'?

Faith: Playing outside.

Ella: Dogs?

Faith: Yes, I am playing with the dogs.

Ella: Dogs! (I think this meant something like "Pet the dogs for me!" It was a statement where as the previous "dogs" was definitely a question.)

Faith: Okay!

Ella: Bye-bye! Ha' guhh da! (Have a good day! We always say this in the morning when dropping the kids off for school and Ella has picked it up. In her vocabulary, it goes with "bye-bye". LOL!)

Faith: Bye!

So there you have it! A complete telephone conversation from my hard-of-hearing 20 month old! I was so proud and a little amazed! Even all the therapy and testing and assurances from professionals didn't ease my fears as much as that innocent exchange between sisters on the phone. She's doing fine!







Here's a fairly recent photo of Ella. You can see her sparkly ear molds if you look closely.