Tuesday, July 17, 2012

Washington: the Down and Dirty

The previous post was a presentation of my part in the briefing that occurred yesterday in Washington.  This post is meant to give a little more of the impressions we took from the day...

I spoke first at the briefing, then listened to the neonatalogist discuss the pressures a family with a child in the NICU are under.  Okay, been there, done that.  The expert from Florida got up and discussed the difficulties the Florida Medicaid system has been having (which is well-known if you are living in our world).  For those who are NOT aware, Medicaid, unlike MediCARE, is a STATE-RUN program.  That means it varies tremendously from state to state.  This has been a source of great frustration to me since we entered the system.  Anabelle gets FANTASTIC Medicaid coverage, the only real problems being with the bureaucracy of it all.  Children with her exact same condition in OTHER states cannot get anywhere near the kind of coverage that she receives, especially regarding our in-home nursing care, which is absolutely vital to the function of our family.  Listening to Mrs. Ray speak, I was feeling pretty good about the ol' PA.

Then Dr. Dorn got up and started talking about how the system functions in Louisiana.  My sails started to deflate.  AUTOMATIC renewals!  Medicaid and CHIP working JOINTLY!  ON-LINE APPLICATIONS AND RENEWALS!!!  No more leaving my child and going down to the Medicaid office on Crosby Street in Chester to renew her benefits, or make a simple address change.  *Sigh*  It's like SN heaven....

Ah, well, that's what we were there for, to encourage more states to push for updates and reform in the system.  We had nice feedback from everyone we met...except that one guy...

Inexplicably, the briefing organizers left sheets of paper on the table where attendees could write ANONYMOUS questions for the moderator to ask the panel.  Most people who had questions simply got up and asked us themselves.  The only person who filled out the anonymous sheet was the one with this question, "What are your thoughts on the moral question of paying all this money towards the care of children who will never become taxpayers?" *Claws Unsheathe*  The question was directed to the neonatalogist, who sort of stumbled over an answer, clearly trying to be politically correct about it, and then she turns to me and says, "Mrs. Linzey, do you have anything to say about this?"  HMMM, let me think about that one....

I declined.  For two reasons.  1. The program was running late, the attendees were gathering their things and heading towards the door, and I had a train to catch; and 2. Because if this ignoramus was going to hide behind a piece of paper instead of asking me his ice-hearted question to my face, then I was not going to deign to answer him.

But, for you, my dear friends and family, I would like to offer this response, should you ever be confronted with this question in regard to my daughter or any child you know know who is never going to become a "contributing" member of society:

Dear Mr. Clearly-Not-A-Parent: My child is a daughter, a sister, a granddaughter, a great-granddaughter, a niece and an irreplaceable friend to hundreds of people.  Anyone who has ever met her will tell you that their lives were never the same again.  She has taught me more about compassion, understanding and unconditional love in her two short years of life than I had ever known in the 32 before she was here.  What good is a government to ANY of its citizens, if its most important job is NOT to protect and care for those who are not able to care for themselves?  What purpose does ANY public program have if it is not to lift up those who are down?  I'm not sure what you think the function of organized government is if it should marginalize anyone who does not feed directly back into the system.  I am curious to know who you think should set the parameters of defining what makes someone a valued member of a society.  I am also curious to know what you think SHOULD have happened with my child.  She is alive.  Would you like to make her otherwise?  Please come back to me with your question when you have a plan in place for how to deal with these "undesirables", and the results of public polling on how many Americans think your plan is a model for the society they want to live in.  Thank you.


  1. Kate, you are an extremely eloquent and graceful speaker! I would have gone all Hulk on that idiot and really come across as a beligerent fool. My blood boils to hear such narrow minded things people can possible think of. I am so proud of you and the work you have done. You speak beautifully on behalf of your family and many other families with beautiful special children. As lucky as we are to have Anabelle in our lives, we are also lucky to have you! Keep rockin' super mama!!

    cousin jenn

  2. As usual Kate, your writings are inspiring to all.
    We love you...Robert & Patti