#71 - JC

I love handicapped kids.  I love their honesty.  I love their enthusiam for simple things.  I love how they try so hard and can do so much.  They are willing to try things that adults don't even consider because they think it is too hard.  #71 is an exceptional child with Down's Syndrome.  He is probably an adult now, but in my mind, he will always be a kid because I haven' t seen him in 17 years.

He was my very first pediatric home health patient and he was a 15 month old with Down's Syndrome.  He was referred to therapy because he was getting closer to age 2 and wasn't walking yet.  He lived in a house with his very young parents and his grandparents.  Very clean, caring, loving people living together because they could not afford to go our on their own.  His dad was working offshore and his mom was a receptionist at a doctor's office.  His grandparents kept him during the day, so his parents could work for a little over minimum wage.  When I started therapy with him, he had private insurance through his dad's job.  But...I knew that this would end because he was close to meeting his lifetime maximum.  Amazing isn't it?  Not even 2, but because of the many medical problems that he had already had (born 8 weeks premature, airmed to Tulane hospital, heart surgery, neonatal ICU, stomach surgery, etc.) he was about to lose coverage.  And this was 17 years ago.  Anyway, during the course of our treatment, he did lose coverage and became eligible for Medicaid.  For those of you who are not familiar with Medicaid, this is the insurance for the people who fall below the poverty level.  It is subsidized by the federal and state government.  When I treat a patient like #71 with Medicaid, my reimbursement rates drop by 76%.  Amazing isn't it?  Then comes the better part.  Mom working for minimum wage and dad working offshore 7 and 7.  Mom gets paid bi-monthly and dad gets paid every other week.  On the month's that dad has three pay periods in a month time span... you guessed it...the family makes too much money for the month and they are disqualified from Medicaid and have to re-apply the next month.  This means that all medical services have to stop until they can get reinstated.  (Unless your therapist treats you for free :)  Anyway, after about a year of this, you guessed it again.  Mom quits her job because then they can have continuous medical coverage for #71.  The system forced the parents to quit work to get medical insurance for their disabled child.

By having a child with a handicap, these young parents, were locked into a lifetime of struggle and sacrifice.  They did it without remorse, because this is their child, but what kind of a system is this?  Like I said in the beginning, I haven't seen this family in years, but I think about them every time I pass their house. (*see side note below)  I wonder how they are doing.  If the financial struggle got the best of them.  If their marriage survived the stress.  If they have ever gotten out of the hole that they were thrown into when their child was born. 

I am an optimist and I hope the answer to all of those questions are yes.  But...I have worked in this field long enough to know that that is probably not accurate.  I will end this on a positive note and not get into the politics of the healthcare debate.  I am glad that the leaders of this country are starting to realize the crisis that we face in regards to the health of our nation.  I pray that someone will find a solution that makes sense and works.  I hope that #71 is a happy, healthy 19 year old now.  I remember that he gave the best smiles ever! The best kisses ever!  and The last time I saw him, he walked me out of his house to my car with no assistance!

*Side note - They lived out in the country.  They had an electric wired fence that lined their driveway.  The fence was to keep the cows in.  I remember the time that I backed into the electric fence with my royal blue suburban.  Then proceeded to move forward and scratch the entire passenger side of my car with the wire.  And then, let the cows out...  Good times :)  I love you dad!