Friday, March 06, 2009

The Speech, Remix Edition

Did you know I hate public speaking? Well, I do. And yet, today I spoke at a conference here in town about the expansion of our SCHIP program to include a buy-in program for families at 200%-300% of a federal poverty level, namely how such an expansion is not only socially responsible but also fiscally responsible for our state. It was an amazing gathering of people, important business leaders in our city and state, political figures, people from the medical community...it was just generally a really wonderful showing. It was also a room FULL of people and one small me, with a major case of stage fright. Somehow, though, I found my voice and stopped my knees from knocking long enough to squeak this out:

Hello, my name is Kyla [LastName] and in February of 2008 my daughter lost her health insurance. She had been covered by the Texas Children's Individual Health Plan which chose to close its program in early 2008. When I discovered we would have to find alternate coverage, I didn't expect any problems. I thought we could simply move to another individual insurance plan. When I actually applied for this coverage, I discovered that wasn't the case.

My daughter, [KayTar], has an undiagnosed neurological condition that affects several of her bodies' systems. It has caused brain lesions, debilitating neurological attacks, progressive hearing loss, a feeding disorder, sensory processing disorder, gross motor delays, muscle weakness, chronic constipation, asthma, and a higher rate of illness than typical children her age experience. She has needed developmental therapies to teach her to do the things that come naturally to most children, like walking, talking, and eating. She sees a team of physicians that treat her specific symptoms, and also continue to search for an underlying cause for her condition so we can treat her more effectively.

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 our state 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 laboratory test can cost well over $3,000. It does not make sense to pay nearly $1000 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] was without vital therapies and specialized medical care for four months. During that time, multiple physician appointments were canceled and her therapies had to be discontinued.

Her feeding situation has declined so much so that she had a feeding tube surgically placed in November to help maintain her nutritional needs. However, while she was without coverage, we couldn't even take her in to see the physician in charge of this portion of her care and we were unable to continue the therapy that helps her develop the abilities that are necessary for eating. There simply are no treatments or therapeutic options for her without access to affordable, comprehensive healthcare 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 more than 5 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 no one will give us the opportunity to do so. The only plan that is willing to cover my daughter and provide adequate coverage is our state CHIP plan, but we are $260 dollars over the monthly income limit for CHIP.

We had no other options when we contacted the Children's Defense Fund. We were at absolute end of our insurance search. Because we had no other viable options, my husband had even requested a pay cut to lower our income enough so that our children could qualify for coverage, but his employer never answered his request. I am happy to say that with the help of the Children's Defense Fund we were finally able to get our children into the CHIP plan, but to do so, we had to pay for unnecessary childcare to effectively lower our income enough to become eligible for the program.

While I am so thankful for this allowed deduction and believe it to be a great step forward, for our families like ours it should not be the only way to qualify for proper healthcare. We are not looking for something for nothing, we just want our children to have access to the care they need. We have always been willing to pay for this coverage, to pay into the system we are using, but unfortunately, no one will allow us to.

Our situation was further complicated in December after my husband received an automatic 3% cost of living raise. This put us $20.54 above the CHIP income cut off and once again he had to approach his employer and request that his pay be lowered. During the time it took to have his salary lowered, our children lost their insurance coverage again due to that negligible pay increase and we are currently awaiting their reinstatement into the program. It seems unbelievable that a cost of living raise can become a major crisis, but it is when our children's health hangs in the balance.

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 to cover the cost of our children's care, it would go a long way toward bridging this very large gap. There are approximately 500,000 children in Texas who are uninsured and above the CHIP income level cut off, let's work together to lower this number.


And then I got a standing ovation. It was awesome and overwhelming.

I also had the opportunity to speak with a lot of amazing people and do quite a bit of hand shaking and receive an embarrassing amount of compliments. No one seemed to buy the whole, "This isn't my forte! I get incredibly nervous up there!" story. I even spoke with someone who thinks she will be able to get the kids' SCHIP restart date pushed up. She is working on it and hopefully we will hear something next week.

As much as it pains me to gear up for these speeches (and it DOES pain me, oh the anxiety!), I continue to do it because I believe it is so important to get our story out there, the story that hardworking, responsible people can be left without recourse, that sick children are denied coverage to the care they are so very dependent on, that this doesn't only happen to THOSE people, it can happen to you, because it happened to me. Our system is broken and there are innocent people tumbling through these very large cracks every day and like it or not, we are all paying for it, socially and fiscally...and in the end, these uninsured children are paying the highest price of all.

In the end, I'm always so pleased to have the opportunity to share our story and as soon as I'm done speaking and the anxiety dissipates, I'm extremely satisfied with the work we are doing and the outcome of conferences like this one. When the facts (like it would cost every taxpayer in our state only .90 each month to provide coverage for those 500,000 uninsured children in our state. NINETY CENTS!) are presented in a forum like this, it really does make and impact and I am proud to be a small part of advocating for an issue that is so important.


PS: If you are a local, I also did an interview that should air on Houston Public Radio on Monday morning during drive time. Lan Bentsen and Barbara Best were also interviewed and it should be really wonderful. Tune in if you are able!

32 comments:

flutter said...

Go, mama,GO!

Pgoodness said...

You are awesome! I am proud you are out there, being uncomfortable, trying to make a difference. Inspiring, you are!!

Magpie said...

I'm giving you a standing ovation from NY.

Anonymous said...

I have tears rolling down my cheeks after reading your speech! What an incredible thing you are doing for not only your children but so many others. I am Canadian and although our univiseral healthcare system has it's issues they are nothing like what you deal with in the US. Everyone should have access to proper healthcare. It can be done, it is being done and it works. It is not perfect but I cannot imagine denying a child life sustaining treatment and care. You are doing a wonderful thing and you need to keep going. You will and are having an impact! Good for you!!!

Chaotic Joy said...

I am so proud of you, friend. Watching you go through this process the last couple years has really opened my eyes and given me a whole new perspective on the way the healthcare system in this country is broken. God bless you. :)

Woman in a Window said...

You are an awesome force! Keep going, you're not only helping your family. These are important issues for every family. Hoot hoot!

alejna said...

I have tears in my eyes.

You are doing an amazing thing, speaking out and sharing your story like this.

motherbumper said...

And I give you another standing ovation for the great white north. And it really puts it in perspective when you break it down to less than a dollar a month from each taxpayer would help half a million children. Tell me who says can't spare that 90 cents and I'll raise an eyebrow next time I see them buy a coffee (a coffee that would probably cover two taxpayers expenses.)

InTheFastLane said...

You ROCK! And I hope you get more than ovation.

Lisa b said...

wow. wow. wow.
Kyla I get chills just thinking about your struggle to get kaytar coverage. Having a child with special needs is enough of a job without that extra burden.
you rock babe.

crazymumma said...

The thing about you? You move mountains woman. You are articulate forthright and emotional, in a way that can access the hardest of hearts.

The insurance situation is ridiculous and I was prompted to wonder. How would a child, any child but particularly a child with K's issues, with parents lesser....informed. Less strong.

How would that child fair?

your voice is raised for many. To hell with the stagefright.

Mimi said...

Kyla, I am so proud of you. I know you find these things hard to do, but you muster so much grace, power, dignity, and kindness that you are an unstoppable health care advocate. It's impossible for people to dislike you, and you narrate your story so compellingly I don't at all wonder why you keep getting called on.

I am in awe. So impressed. Hats off to you, roomie.

Lady M said...

You are an amazing, smart, well-spoken woman. Your children and many others thank you.

Christine said...

oh kyla, i continue to be impressed and amazed by you. you are fighting the good fight for parents and children everywhere. bravo, bravo.

Becca said...

You are so awesome! Thank you for being the face of this problem. You have done nothing wrong, work hard, pay taxes, and are just like everyone else, as you said. We are all so close to being in exactly your situation and it's time for something to be done about it.

Ben and Bennie said...

Another one in South Carolina is standing while applauding. I am so proud to call you my friend.

tierd said...

Awesome, Kyla! I wish we could have seen/heard you speaking the words, but reading them was second best and it was a fabulous speech, my friend! Way to go!!!

Hetha said...

Holy shit you rock! I'm so thankful to you and for you.

Bon said...

dude. i had chills reading this.

you've got my standing O too. now i just hope the right ears are listening.

~aj~ said...

I am so proud of you...stepping outside of your comfort zone to be an advocate for your children and to help all the other uninsured children out there. Way to go!

I knew you'd do awesome, but a standing ovation? WOW. It gave me chills just to read about it!

metro mama said...

Yay, you! I'm not surprised about the standing O.

I'm told it gets easier the more you do it. Keep it up!

Jaden Paige said...

That is amazing and awesome. I'm so glad your speech was well-received! Now let's all pray that they actually DO something about it!

mamatulip said...

Oh my GOD, Kyla, this is an AWESOME speech. Have you considered sending it in to your local/national paper as a Letter to the Editor?

KC said...

What a great speech - I, too, would have loved to be in that audience to hear it live.

I know what you mean about public speaking - the gearing up, the anxiety- it drives me crazy. But it sounds like you communicated just beautifully.

xo!

ewe are here said...

Of course you got a standing ovation... what a speech!

Amazing.

Jo said...

You did a great job! Good for you.

Avonlea said...

Good for you for continuing to speak about this!

90 cents is nothing -- our state needs to do this!!

DiVaughn said...

Kyla, after reading your speech, the standing O doesn't surprise me either. WTG girlfriend!

Did you hear Governor GoodHair is refusing federal unemployment funds? I read the slush fund is going to be bankrupt by the end of the year w/o it. Hopefully we'll have jobs by then! If it's not one thing, it's two or three. Thank you for advocating for Texans...your friend Diane from up I-10. :)

painted maypole said...

i'm so proud of you!!!

Gwen said...

Kyla, you realize you are made of win, don't you?

natalie said...

I'm so proud of you!!!! Your family will have a huge impact on the face of healthcare in our country. I know you would give anything in this world to NOT be the family that changes history... but you are and you handle it with such grace and dignity.

becky said...

It makes me so sad to think that people (like you and your husband) actually can not enjoy a pay increase as it means losing vital health coverage. Somethin's gotta change.