Clutching at the Heels of the Disabled: Why You Should Be Wrestling With the Idea of “Handouts” in Healthcare

white-1184178_1280I read a story this morning in the news about a woman in Texas who stopped on the side of the road to chat with a homeless man.  Since she passed him in the exact same spot  for three years her curiosity finally got the best of her . You can see it here.  He was thin, unshaven, filthy.  We’ve all passed “him” on the side of the road, haven’t we?  Remember the Man-With-The-Golden-Voice several years ago who hung out by the highway and  became a media sensation?  I passed him…sometimes twice a day on the way to my child’s school.  There he was–all wild haired and looking strung out. And then there he was on Dr. Phil with a Cliff Huxtable sweater and a haircut.  A former radio announcer who succumbed to addiction.  We were all cheering him on–he had a Golden Voice and would contribute to society with those gilded vocal chords.  And my, wasn’t he handsome with that haircut?  He could practically be someone we knew!

I digress. This woman from Texas stopped to ask this man why he was always in the same spot all day, every day.  He told her he was waiting for his mother because that is where she left him.

He was waiting for his mother. Right where she told him to wait for her. 

To be sure, his mother was not coming back and this man  struggled with mental illness.  But maybe she really did leave him right there the last time he saw her.  This could very easily be my beautiful boy.

Let me give you some background on this….

What you might not know is that he didn’t suffer from mental illness…that came later in life.  He also had Autism with a speech disorder and a learning disability.  He was raised in an affluent suburb with the best schools in the state but they failed to teach him to read.  This man’s parents were older when he was born, were highly educated, had good jobs and didn’t retire until they were forced to.  His grandparents were all elderly and required care themselves. His father had excellent medical benefits at work that covered most of his care and his mother was extremely resourceful and was able to access everything available from funding to therapies to alternative treatments.  This man’s parents saved as much as they could and because of his unique needs, his mother could not work full-time.  Care for a disabled child is a commodity.  In childhood, the man’s parents tried to give him the most enriching life possible with as much exposure socially as they could.  He found so much joy in being out in public going to sporting events, concerts, religious congregation events and festivals. His parents looked at spending money on these activities as investments since staying at home did not provide him with any social opportunities at all.  After he was about four years old, there were no more parties or play dates or neighborhood shenannegans. His parents were his best friends and gave him a life outside of the house.

This man was once an exceptionally adorable little boy and it was so easy for him to get attention and love almost anywhere he went.  That is, all the way up until adolescence.  It became confusing to him when people didn’t respond in the same way when he would wave at them and say “hey!” or approach their table in a restaurant just to say hello.  His parents put off making a trust because the idea of appointing a guardian was so daunting.  How do you ask someone to make sure your child is OK for the rest of THEIR lives?  How do you ask them to make sure that child has a guardian beyond THEIR lives as well?  Given his parents became increasingly socially isolated as he grew older, it was hard for them to even consider options.  So they just didn’t and hoped for the best.

The boy grew into a man and it was important to his parents that he felt like one. They insisted he held a job and helped him find work wherever they could.  As they grew older, their health issues became too much for them to be able to continue to change diapers or physically help move the man to safety when he got upset and ran in the direction of danger.  The man’s health care waiver ran out when he turned 22.  Reluctantly, his parents dipped into their accounts for his care and in less than 5 years, they ran through their life savings. The same amount of money that would have been considered sufficient in any other situation in old age.  The parents did everything right.  The man worked hard his whole life to be the most contributing member of society his parents could push him to be. And yet…..one day on the way to a doctor appointment, the mother asked the man to wait outside.  She was afraid that if the doctor saw she was trying to care for an adult with a disability he would be taken away…taken away to live in a substandard long term care facility…one that was short staffed where he would be living with strangers. The Medicaid cap would release him to the streets when it ran out. Well…frankly, it was better to let him wait outside, she must have thought.  That is until at that doctor appointment he determined she needed surgery immediately because all the nausea she was having recently turned out to be repeated heart attacks due to a blocked artery. Only she didn’t make it in time to let anyone know her beautiful boy was waiting on the curb for her.

And there he sat for 3 years.  Wandering for food. Wandering for help, but due to his speech disorder and illiteracy, there was no one who understood him enough to know who he was or what he was looking for.  He looked crazy. He looked drunk.  He sat and wandered until that nice lady finally stopped to ask him who he was.

This could be my son.  My beautiful boy.  The kiddo who is 11 years old right now. Of course, it is not.  I actually know nothing about this man from Texas or his background.  But I certainly can imagine this very real scenario.  It is a scenario that keeps me up at night with the exception of the kindly stranger and the happy ending on channel 10.  For those of you who believe people who live off the system have made their lot in life or that they are owed nothing…is this who you picture when you see the guy sitting on the side of the road?   Because that guy may have once been my beautiful boy….your white, upper middle class neighbor’s child who you thought was a ‘cool little dude’.  Where do you think those kids go when they have no one? (and if one more affluent person who knows my child says “well….THAT’S different” be prepared to introduce me to someone else you know milking the system.  Go ahead…I’ll wait right here.).  Because you personally know me and because you personally know him and we kind of look like you  does not make him more deserving than the dirty adult sitting on the curb you think you have never seen before.  That guy that is owed nothing. You just don’t recognize him because you keep your eyes on the road.

I don’t think…I KNOW that one day I will die. Unless I sell my soul to the devil, I am not sure how I will manage to work a  steady job through my own elderly death that will happen AFTER his . I keep reading how his care should all be on me.  And it most certainly is.  And my husband and I have done everything we are supposed to do.

Today.  Call your congress people TODAY.

Don’t know who they are?  Click here to get the name and contact of your National/State/Local representatives.  Don’t know what to say?  Pick out the parts of this article that spoke to you the most and read it to them.  Remind them that NO ONE is a throw away person….not any of their constituents.  Not even the ones that cannot vote.

Stop what is happening with the repeal of ACA.  $800 BILLION cuts in Medicaid are going to be made for tax cuts to people who don’t really need those tax cuts. Medicaid will come in block grants to states with caps….and those caps come quick.  Where will my baby go when he meets his cap?  1 out of every 6 children have a disability and many of them depend on their families to ensure the bulk of their care and with Medicaid to help where they cannot. I have split my time between working and paying taxes to the country I am asking to help and also providing his care.  What happens when my child is not in school and needs full time care?   How do you keep a job and ensure your commitment as a tax payer while also fulfilling your duty as a parent of a disabled child?  If I don’t have a job, he is a freeloader.  If I do have a job, I am a freeloader AND negligent. The circular logic for the reduction of assistance and subsidies is just that ridiculous.

I am glad to hear that man from Texas is doing well.  I am glad there are middle-class individual citizens out there who might stop their cars to find out how they can help.  This, however should not be my son’s disability policy. His life is worth more than a sound byte on the local news.

4 thoughts on “Clutching at the Heels of the Disabled: Why You Should Be Wrestling With the Idea of “Handouts” in Healthcare

  1. linda shovea March 29, 2017 / 1:34 am

    Oh God. I. Know.
    And this is my nightmare. Everyday. Every second.

    Like

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