Tuesday, April 03, 2007

Terri's testimony supporting the Family Opportunity Act



Testimony of Terri XXXX in support of Senate Bill No.59

Thank you for allowing my husband and I to come and speak today. My name is Terri XXXX. I am a stay at home mother of a medically fragile baby and my husband is a police officer with the XXMPD. We are here today to ask for your support of the Senate Bill No.59 and to discuss further, the importance of providing a comprehensive “safety net” for all families that earn over the federal poverty level.

We are the parents of 23 month old Matthew King. He was born 2 months premature with a rare, life threatening four- fold heart defect. The defect was determined not to be genetic and was completely beyond our control as parents.

His heart defect has ballooned into a host of other medical issues.

By the time Matthew was 10 months old, he had undergone two open -heart surgeries at Lucille Packard Children’s Hospital @ Stanford . He will also require additional open- heart surgeries in the future. We are currently on a path for a third surgery that could arise any day. How many more will he need, we do not know?

We initially felt secure that we had such good health coverage with the police department. I am here to tell you, as a result of the extensive medical care he has received and the 6 months we spent in the intensive care units of two hospitals; 1.9 million of his 2 million dollar “lifetime cap” had been met.

Mike and I did all the right things to prepare for this baby. We took every test possible and all appeard to be good. We united together with our family to welcome this beautiful child into our lives.

There is nothing we could have done in advance to have prevented this from happening to our baby.

We are perfect proof that a loving and responsible family can do everything right in their life, and still end up being financially ruined because of the misfortune of a catastrophic medical event.

Even worse, how can we properly care for this medically fragile child, who will need a lifetime of extensive medical care without health insurance? Even with good health insurance, these precious cardiac children are very expensive to provide for.

We once read that parents should not even file for bankruptcy until the child dies, because the medical expenses are ongoing!

We have been told that we are not eligible to purchase private insurance for various reasons. Even if we could, would we be able to afford the premiums? Mike and I were facing horrible options.

What was suggested most often, was to manipulate the system by obtaining a divorce, with my husband taking the joint assets, so I could appear to be a poor, single mother. Not only is this fraud, but it’s not the example we choose to set for our children!

A representative of The XXXX Insurance Commissioners office stated that we did have options, but we just would not like them. Our options ranged from ridiculous to outrageous. The stated options were: Move out of XXXX, to another state that offers the high-risk pool. No one should be advised by a XXXX official to leave the state, where we have resided, voted, paid taxes and built our life together with our family by our side.

To us, it is no different than what Mexico does to their citizens, by encouraging them to move out and come to this country for better care.

In addition to this option, Mike “could just quit his job” that he values so dearly, and get another job, in hopes of getting more health insurance. Lastly, we could “give Matthew up for adoption!” We would not consider this at all! Why should we give our child up because he’s sick or disabled?

We have been told by many healthcare workers that if we were poor or illegal, Matthew would have qualified for full medical coverage by the state. We feel that the State of XXXX is allowing the system to be broken, by choosing to look the other way.

It gives the impression to the hard working citizens of this state that achievement is a liability and being dependant on the state is rewarded.

When my husband and I were in the Intensive Care Units’s for six months, we saw and heard of illegal alien mothers going home with Medicaid Cards for their babies . Why is it that the baby of an illegal alien mother, will get full healthcare coverage before our baby ~ if we were to run out of insurance?

Matthew is an American~born baby of a Gulf War Veteran who is a police officer that has served XXXX County for over twelve years. What I am saying here is, children like my son need access to medical care as well.

We listened to one mother brag about getting full healthcare coverage for her family, FREE, because she chose not to marry her children’s father.

Can you imagine, watching your child struggle and fight for life, while you worry and fret about how you will pay the medical bills, and the mother of the child next to you, is smiling and telling you that she knew how to get her bills covered?

There needs to be something in place for families like ours! It is society’s responsibility to help those that are trying to help themselves, but are up against impossible odds.

We are not asking for hand-outs. We are willing to pay for Medicaid or a high-risk pool.

I realize XXXX is always cutting budgets because there isn’t enough money. The pie is only so big. I need for you to see the importance of making this issue a piece of that pie and allocate money to it.

Currently, it is easier to deny the program and have those families needing help move away or get divorced.

In your positions, it is easier to shake your heads and say, “Yeah, that’s too bad.... but nobody will support it.”

Please do something now about this, for many legitimate XXXX families are in dire need and that need is growing. I would like to ask you to please put yourselves in our shoes and think about what you would do, if this happened to your child or spouse and you were given the same options we were given.

Families who live in the State of XXXX who earn over the federal poverty level need better and decent options.

Just because we are not at or below the poverty level, does not mean we can afford the extensive and exorbitant medical expenses for our child.

Why doesn’t the State of XXXX have a high- risk pool like thirty four other states in this day of age? Who or what is blocking this essential need?? Furthermore, why doesn’t the State of XXXX have a Medically Needy Program to help families of medically fragile children? (Such as California and Massachusetts)

It would benefit our state to develop high-risk pools for the productive citizens. These productive citizens would then continue to add to our society, and not be forced to add to the dependant burden our State is already straining to finance.

There is no one in any better position, than this senate committee to make this happen.

Thank you kindly for allowing me to talk to you.

8 comments:

i'm_inspired said...

Mike and Terri,

We're so anxious to hear the outcome of these testimonies. They are excellently composed!

God Bless you and precious Matthew!

Grandma W said...

The Nevada people with "the most needs" are lucky to have both you and Michael in their corner. I pray the Holy Spirit opens the hearts and minds of the Nevada Legislature. This is the BEST community service you could perform for your fellow man. You go girl & guy!! Right and Justice are on your side. Love Mom

Tonya said...

Very well said. I pray this gets passed.

Grandma Sue said...

Dearest Terri,

I can just imagine what an emotional experience this was for you to have to stand before a group of legislators and try to make them understand what they need to do to change the current laws to provide for those caught in the middle - not rich enough nor poor enough. I am so sure that the way you and Michael presented yourselves as well as the topic you were discussing made quite an impression on those present. I commend you for being strong enough to do this, but you have shown this inner strength throughout the past 23 months raising our little braveheart Matthew.

I love you so much and am so very proud of you for standing up for what is right for so many people.

Matthew will tell both of you some day just how proud he is to have such wonderful parents. He is truly our miracle and our gift from God.

Love, Sue

Denise said...

i said it before and i say it again, what you spoke was nothing but the truth, and you are proof. this testimony, outlining what they told you to do in order to get the services illustrates how broken the system is. i remember when you were interviewd for the tv and mike saying that it was not the lesson he would teach his son, how to commit fraud, to divorce in order to accomplish fraud. that in itself told me what kind of person he is, and i admire both of you for your strength and courage to be david against goliath!

you are an incredible force, both of you, and i believe there is little you couldn't accomplish when you believe so deeply.
i am proud to know you and love you!

Grandma W said...

4/9/07 - 2nd comment

I had the opportunity and privilege to "read" this speech prior to hearing it; however, for reasons unknown, I found Terri's words very powerful and compelling. The focus also was on the "urgency" for this bill sp59.

It touched chords in my heart watching the past photos of our beautiful, wonderful Matthew who suffered so much for being so little. God bless you Terri for all the pain you and Michael have endured and for the willingness to move forward for ALL the medically fragile children and adults in Nevada. You are a "powerful" voice that can't be ignored by any honest Nevadan or American. If the Legislature can turn a deaf ear on your voice, they are "brain dead". Love mom aka grandma wright

Liam's Mom - Gina said...

Yes, hearing your words were much different than reading them. You are a moving speaker as well as your sweet husband. Great work in your preparation and delivery! I am so proud of you!

Richie said...

Terri speaks from her heart and also as a MOM. Who can argue with anything she has said. She also said it very well and if those she spoke to did not understand this appeal message for help then I would have to presume that they were all deaf. Good job Terri. Proud I am of both of you.