Monday, April 28, 2008

The Speech

Hello, my name is Kyla [LastName] and on March 1st, 2008, my children became part of the 1.5 million uninsured Texas children. My daughter had been covered by the [Previous Insurance] Plan which closed its program at the end of February. When we discovered we would have to find alternate coverage, I optimistically assumed that HIPAA would protect her and we could simply move to another individual insurance plan. When we actually applied for this coverage, I discovered that wasn't the case. You see, KayTar is not a typical, healthy three year old. She has undiagnosed neurological attacks that are incapacitating and can last for up to 11 hours. She is deaf in one ear and has to have bi-annual hearing tests to be sure her hearing hasn't further deteriorated. In her short life, she has had two MRIs, two CT scans, two lumbar punctures, and three EEGs. Before losing her insurance coverage, she was in developmental, occupational, physical, and speech therapies because of her developmental delays. She sees a geneticist, neurologist, feeding disorders specialist, gastroenterologist, ophthalmologist, audiologist, otolaryngologist, her regular pediatrician, and was due to see an orthopedist prior to losing her insurance coverage. She has been in the ER six times for various issues. She has been hospitalized twice. She is on daily medications for chronic constipation and asthma. Although she is thriving in spite of it all, she is not the picture of a normal, healthy child, and she is too much of a risk for the insurance companies to accept. We were denied coverage. After being denied, we were referred to the High Risk Pool, which was created for children like KayTar, however, we are not eligible for this program because my husband's employer offers group coverage. Unfortunately for us, the group coverage is not an option either.


My husband's group plan would cost us 30% of our monthly income and we do not have 30% of our income to spare. On top of that, the insurance they offer is not comprehensive. None of KayTar's therapies are covered; none of her genetic appointments or tests, and many of the things that are covered have stringent limitations. KayTar's therapies alone cost over $400 per week. A single genetic blood test can cost well over $3,000. It does not make sense to pay over $900 per month on an insurance plan that will not cover necessary testing and treatment. Half of all working men and women do not have health insurance through their employer at all and many, like mine, cannot afford the coverage their employers offer. Because of this, KayTar has been without vital therapies and specialized medical care for two months. In that short amount of time, I’ve had to cancel her hearing test. I’ve had to cancel a crucial appointment with her feeding disorder specialist. A few months ago her feeding situation had declined so much so that we were beginning to discuss the possibility of a feeding tube, and now I cannot even take her in to see the specialist who can help her overcome these obstacles. If things were to decline further, we have no safety net. There are no treatments or therapeutic options for her without health insurance. We can’t even afford for her to be seen in the feeding clinic without insurance coverage. Due to recent changes in her neurological episodes, the pediatrician recommended another MRI, but that will also have to wait until we find a solution to our health care crisis. Since losing our insurance coverage just two short months ago, my daughter already lacks her necessary medical care, because we do not have access to affordable, comprehensive coverage. Can you imagine what it is like to choose between your financial responsibilities and your child’s health?

My husband has worked as a network administrator for the same banking system for over five years. He is a reliable employee; I can count the number of sick days he's taken on one hand. We pay our bills on time and take care of our taxes. We are financially responsible and more than willing to pay for our children's health coverage, this has never been the issue. The problem is that we don't have the option to do so. The only plan that will accept my daughter and offer her adequate coverage is the state CHIP plan. Unfortunately we are $260 dollars over the monthly income limit set for CHIP. Because we have no other viable options, my husband has requested a pay cut in that amount, so that our children can qualify for proper health coverage. Not only will this decrease our monthly income, it will also cap him out at work. He will no longer be eligible for raises or positional promotions. It shouldn't be this way; my husband should not have to handicap his career to provide for his children. Families who are willing and able to pay for adequate coverage should be allowed to do so, especially when the children have a serious need for comprehensive coverage.

This can be changed and our state leaders can change it. I speak for our family and families like ours when I say we are willing and able to pay for our coverage, we just need to be given a real opportunity to do so. All children deserve access to proper health care, regardless of their health status or income. If the CHIP program could be modified so that families like ours could pay into the system on a sliding scale to cover the cost of our children's care, it would go a long way toward bridging this very large gap. There are 487,000 children in Texas who are uninsured and above the CHIP income level cut off, let's work together to lower this number. Mohandas Gandhi said "We MUST be the change we want to see in this world." Today I stand before you and ask you to be the change my child desperately needs to see in this world. Do it for her, and the thousands like her. Do it because it is the right thing to do.


****

Tomorrow I'll be on my way before the sun comes up. EEK!

44 comments:

flutter said...

I am holding your hand, girl. Now go kick ass.

Chrissy said...

(standing ovation)

Wonderful speech. Just wonderful.

jen said...

Kyla, YOU BRING IT, GIRL.

You will. You go be that change you want to see.

will be waiting to hear the update!

Family Adventure said...

Just moved to tears. Let's make this happen!

Heidi

Vicky said...

I am a long term lurker; I often feel too shy to comment, like I'm intruding....

However, I wanted to add my best wishes and thoughts for that powerful and honest speech making the maximum impact.

I am sure it will make a difference, even if it's not immediately visible.

nomotherearth said...

GREAT speech. Go get 'em.

Trish said...

That's an incredible speech, and an incredible story. As an Australian citizen who enjoys full health cover (Medicare is funded through a 1.5% levy on taxable income, and is available to everyone regardless of income) I cannot conceive of a situation like yours in a country like yours. Good luck, and I hope that whoever your next President is, they will have the answers to fix this unbelievable situation.

cinnamon gurl said...

Guess you're already on your way, but this is a GREAT speech! Good luck! I know you'll do great.

Chaotic Joy said...

I am bursting with pride. This was fantastic. You totally rock, Kyla.

Becca said...

I have CHILLS! I'm so proud of you!

InTheFastLane said...

You are an agent of change and you rock! Now it is time for people to start listening and doing.

slouching mom said...

Brilliant, Kyla. You're gonna knock 'em dead.

Mad said...

You will rock the house! I believe in you.

womaninawindow said...

Be loud and firm and be heard. Yours is a voice worth listening to! good luck! good luck! good luck! Someone's gotta hear you!

liv said...

KICK. ASS. you are so freaking awesome. i'm really proud of you.

Christine said...

Kyla, you knock 'em dead.

I have so much hope for you and them and everyone.

painted maypole said...

you're in my prayers today.

the speech is fabulous. I'm crying. ;)

Beck said...

KYLA! THAT IS AWESOME!
And I am praying for you.

laurie said...

Best of luck! Love to know how it turns out for you! (came via Momocrats)

Mimi said...

Kyla, this is beautiful and powerful. A lot like you. Wonderful, wonderful speech.

Deb said...

It's a wonderful speech Kyla. Give 'em hell!

Christine said...

i love you kyla.

i am standing and cheering and applauding!!!!

Kristin said...

I'm waiting to hear how it went!

(Glad to see otolaryngologist in there...and Jason will be glad to see Mohandas) :)

Chickenbells said...

*Claps enthusiastically*
That is both a beautiful and moving speech, I hope that someone hears you and is also the change that we need to see!

Gretchen said...

AWESOME!

ewe are here said...

Brilliant.

Just brilliant.

Go get 'em!

amanda said...

YOU ROCK!!!!!

Queen Mommy said...

WOW.

Just wow...

Bea said...

This is powerful, powerful stuff, Kyla. I'm in tears.

ALM said...

Omigod. Amazing. I am in awe.

natalie said...

YES! YES! YES!!!!

I'm praying that the ears that need to hear are opened and that the words that need to be spoken are clearly expressed. You have a special gift, my friend...blow them out of the water!!!!

Pgoodness said...

that is a fantastic speech!

jeanie said...

Great speech. Good luck. May they hear.

Awake said...

Here from Mad's blog. I'm standing (in Iowa) in support. Go get 'em!

Sophie said...

All the very best for your speech, it sounds excellent.
Good luck.

alejna said...

That is an excellent speech. You are so very amazing.

I've been on pins and needles for news about how the press conference went. I've was cheering you on in my head all day yesterday.

Jenifer said...

Coming from Mad's...I am saying a prayer for you and your wonderful speech.

crazymumma said...

Now this girl, gave me a visual burned in my head. And in my heart.
You know how I feel about this. It should not be this way.

As Flutter said. Go kick some ass.

Avonlea said...

Catching up on reading blogs -- I hope that the speech went well. you go, Grrl!

carrie said...

I know you knocked their socks off with that.

I know you did.

Can't wait to hear all about it!

~aj~ said...

You already know I think it's fantastic, but it can't hurt to say it again right? FANTASTIC!

I was in the mountains of Missouri this week and had no computer access, but want you to know that I said many prayers for you and I was thinking of you all day on Tuesday!

kittenpie said...

Am now totally choked up. You're so right - it shouldn't be this way. I hope they pick up that challenge and make it their own, make a good mark on the world, or at least your corner of it.

Bon said...

Kyla, i know i'm late getting here and reading this. it was a great speech, and i can see why you're in the paper.

but you know what rings in my Canadian ears all through it? "we are able and willing to pay".

what you're asking for is wonderful, and i hope will be successful in seeing the CHIP program moved to a sliding scale. but...seriously. yours is the only country in the western world where the request that your child get needed medical care needs to be prefaced with "we are able and willing to pay." ask for the moon, baby.

Lawyer Mama said...

So proud of you!