Wednesday night I flew into Baltimore at about 11pm. Weather and traffic were terrible (it was very nice to have a chauffered car waiting for me so I didn't have to hail a taxi) and it was about 1am before I got to my hotel room. The hotel reminded me a lot of the W in Chicago and I was a little sad to see the lobby wasn't filled with drunken bloggers when I arrived! (Suggestion to Swanky Hotels: You should keep drunken bloggers on staff to loiter in the lobby, they really brighten the mood.) Once I got to my room, I plugged in my laptop and much to my dismay couldn't connect to the Internet. As my hands began to shake from the early symptoms of withdrawl, I dialed the tech support line and whoever it was that answered the phone in the middle of the night was a lifesaver. He hooked me right in, free of charge! After briefly checking in online, I hopped in the shower and tried to go to sleep, but it takes me forever to fall asleep in a new place! This was actually the first time I've stayed in a hotel all by my lonesome, which was a little strange, but also nice and quiet.
My alarm went off at 7am and I started to get ready. I ordered breakfast as advised, but it did not sit well and I ended up getting pretty sick. I thought I had come down with KayTar's stomach virus, but thankfully that wasn't the case. I was fine the rest of the day, just suffered from low blood sugar symptoms once a few hours passed without food. After checking out, I walked over to the CDF office with a very nice man named Thomas and we met up with other participants and drove to the clinic. It took a while for the celebrities to arrive, so we all had a chance to chat a little. I spoke with Sharon Ladin who told me about this new website that was just recently launched Speak Now for Kids, which is advocating for children's healthcare reform and is looking for stories from all across the nation about uninsured and underinsured children. (if you have a story to share, please do!).
Once the celebrities arrived, we all took our seats in a big circle of chairs (surrounded by media, EEK!) and started the discussion. I was the first speaker! Two other mothers were present to share their stories, which dealt primarily with being underinsured, and several of the doctors from the clinic shared their own experiences with patients in varying situations. I think it went very well! From there, we went downstairs and a few of the celebrities read stories to the children in the clinic, after which we all hopped on a bus and drove to the Capitol. While on the bus, I sat next to Regina King and chatted a little while scarfing down some pasta and a delicious brownie (with nuts! it felt so rebellious!) and by that time we had arrived.
It had turned into a beautiful and was even a little warm on the long walk up to the building! I'm not used to running around in heels and my feet are paying for it today! On the way up, I had a chance to talk with Keri Russell and Jessica Alba. Everyone was very friendly and personable. It was a wonderful group of women! At varying times of the day I also had the pleasure of talking with Jurnee Smollett, Ali Wentworth, Malaak Compton-Rock, Michelle Fenty, Katie McGrath (JJ Abrams' wife, who was incredibly kind and passionate about children's health reform), as well as many people from the Children's Defense Fund, including Marian Edelman Wright, and women from related organizations. It was quite a day, that's for sure.
Once we arrived in the room, which was gorgeous, we were joined by four congresswomen from varying states and once again I was able to share our story. It was warmly received, as it usually is and I hope these women will be able to use it as a reference when explaining the crack in the system to those who cannot see the cracks for themselves. There are millions of children falling straight through the holes in our current system, just like mine did. We have say enough is enough and fix things and fix them the right way this time.
After that meeting, Susan Gates from the CDF walked me back to the office so I could catch my car back to the Baltimore airport. My driver totally hit on me, which is one of those sentences I never thought I'd write, probably because I don't have many drivers and also because I've been married for (a month shy of) 9 years and don't get hit on regularly. He was laying it on thick though, it was pretty entertaining, and he got me to the airport on time, too! The security gate was pretty backed up and I made it to my gate just in time for boarding. Once I got to the airport here in town, I still had another hour of driving ahead of me (this time I was driving myself and no one was complimenting me, what a pity), but Josh let the kids stay up to see me. KayTar was standing at the garage door and shouted "HI MOM!" and squeezed me to death when I walked in. BubTar was like, "What'd ya get me?!" And just like that life went right back to normal.
It was such a whirlwind trip, I was there for less than 24 hours, but we really managed to pack it in. I met so many wonderful people and heard so many different stories, it was a little overwhelming. It will probably take a few days to really process it all, but I'm so glad I had the opportunity to go and share our story once again in a forum that will allow our voices to be heard far and wide. Sometimes I really wonder how I ended up in the middle of all of this, but I think in the end it will pay off, not just for my children, but for all of the children of this great nation.
Today KayTar's story was featured in Marian Wright Edelman's Child Watch Column. You can follow that link to read all about it. If you are new to my blog and don't know about our insurance struggles, it is an excellent summary.
PS: Can you believe I don't have a SINGLE photo? It was raining when I left the hotel so I kept my camera in the suitcase so it wouldn't be damaged. I should have photos by next week, though, and I'll be sure to share them.
PPS: I didn't proofread this. Don't judge me. ;)
PPPS: I almost forgot, I made a 99 on that exam I has to take on the same afternoon that I flew to Baltimore!
Showing posts with label CDF. Show all posts
Showing posts with label CDF. Show all posts
Friday, May 08, 2009
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!
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!
Wednesday, March 26, 2008
The Interview
Want to hear something surreal?
Our story is being told today in a hearing at our state Senate. If you follow the link, it is the Committee on Health and Human Services at top of the page. There is audio and video, but for some reason I can't access it on my computer.
Our story. In the Senate. Wow.
The interview went well, with the exception of BubTar shouting "Mooooom! Come wipe my buuuuuutt!" while she was tape recording the conversation. CLASSY! Honestly, I feel like I ramble on at times, but she said I did really well. It felt like it went well.
At the end she said, "Did L tell you that your story will probably be used on a national, as well as state level?"
I'm sure I answered with an eloquent, "Uhhhhhhhhh....okay, sure." while my mouth hung agape.
Then she said, "And we may want you to speak to the media, too."
And I passed out. Okay, I DIDN'T pass out. But I thought about it.
And she also said there is a book being published this year that our little tale might end up in, too.
That's when my head exploded. Okay, not REALLY. But almost.
Wow. Just wow.
Also, the CDF will be one of the featured charities on American Idol's Idol Gives Back show on April 9th. They are going to be working to get our story (and other's, too) up on their website so it is ready for any traffic the show generates.
Crazy, right? RIGHT.
I'm entirely out of my comfort zone here, and yet, onward we march. It is such an important cause, not only because it personally affects our family, but because it affects so many families and it is swept under the rug so often. There is a gross misconception about the state of healthcare in our nation and it is time that people realized that. And so I'm sharing our story. What else is there for me to do?
PS: Photos from Austin, as promised, and as stolen from Jana's flickr.
Me, Julie, Sage
Sage, Jana, Me
Our story is being told today in a hearing at our state Senate. If you follow the link, it is the Committee on Health and Human Services at top of the page. There is audio and video, but for some reason I can't access it on my computer.
Our story. In the Senate. Wow.
The interview went well, with the exception of BubTar shouting "Mooooom! Come wipe my buuuuuutt!" while she was tape recording the conversation. CLASSY! Honestly, I feel like I ramble on at times, but she said I did really well. It felt like it went well.
At the end she said, "Did L tell you that your story will probably be used on a national, as well as state level?"
I'm sure I answered with an eloquent, "Uhhhhhhhhh....okay, sure." while my mouth hung agape.
Then she said, "And we may want you to speak to the media, too."
And I passed out. Okay, I DIDN'T pass out. But I thought about it.
And she also said there is a book being published this year that our little tale might end up in, too.
That's when my head exploded. Okay, not REALLY. But almost.
Wow. Just wow.
Also, the CDF will be one of the featured charities on American Idol's Idol Gives Back show on April 9th. They are going to be working to get our story (and other's, too) up on their website so it is ready for any traffic the show generates.
Crazy, right? RIGHT.
I'm entirely out of my comfort zone here, and yet, onward we march. It is such an important cause, not only because it personally affects our family, but because it affects so many families and it is swept under the rug so often. There is a gross misconception about the state of healthcare in our nation and it is time that people realized that. And so I'm sharing our story. What else is there for me to do?
PS: Photos from Austin, as promised, and as stolen from Jana's flickr.
Me, Julie, Sage
Sage, Jana, Me
Subscribe to:
Posts (Atom)