Coming from the heart!

     We've all seen what has been in the news as it pertains to healthcare.  The United State House passed their version of a healthcare bill back in May that will take away the healthcare of millions of Americans. The bill would drastically cut Medicaid, which is the sole form of health insurance for so many.  In other cases, it is a secondary insurance for many families that receive their health insurance through work and other forms. Now, we had the Senate republicans release what they are calling the Better Care Reconciliation Act that will be just as devastating to so many people and not just those relying on Medicaid.

     Everytime I think about the potential cuts to Medicaid and the affects it could have on not only my child but others as well, I'm reminded of what Jim Carnes of Alabama Arise said as it relates to Alabama.  He said that the state itself can be considered to be on Medicaid; if you have doctors leaving the state because of cuts.  When that happens, my child isn't the only one affected by that pediatrician that has left but, the one that is on Blue Cross is as well...as it may be the same doctor. Lets look beyond the doctors and look deeply at the overall affects.

     As you all may already know, Kerstin has a feeding tube, and it is the only way she gets nutrition, and her medicines to live.  All of her medicines, feeding tube(s), extensions, syringes, nutritional formula, gloves, diapers, wheelchair, bath chair, hand splints, neck support(s), AFOs, therapists, specialists, glasses, dentist, ophthalmologist,nutritionist and so much more is covered by Medicaid.  Completely covered!  If it was not for Medicaid, these costs would be devastating on our family.

     Recently, I had to do some paperwork after changing medical suppliers for Kerstin and the forms I needed to sign came with a complete breakdown of the cost of her feeding supplies.  Per nutritionist, Kerstin is to have 3- 8 ounce boluses of her nutrition and 1- 6 ounce bolus; the formula comes in 8 ounce containers that cost $9.33 per container or about $224. 00 per case (she gets 5 cases per month), her bolus syringes cost $650 per month, the feeding extension costs $100.00 and the 'button' (feeding tube) costs $300.00.  These costs DO NOT include any of Kerstin's medicines.

     Now, as titled "Coming from the heart!", I am coming from my heart with this entire post.  We've all heard and some may have even said things like "Medicaid shouldn't be given to the lazy", "these people need jobs" and so much more.  Well, I'm not lazy, I can't be, I have a daughter that is completely dependent upon me for her daily living care, even on days when to quote a line from "The Color Purple Musical", 'I wanna sit and do nothing', I can't.  I can't take on a full time job outside of our home because of her needs and care.  I have a part-time job and I am also continuing my education online.  Kerstin is a minor child on Medicaid...know any jobs for her?

     Kerstin's life depends on Medicaid.  Without it, she would not have had the medically necessary surgeries she's had, including the g-tube surgery that I fought against, out of my own fears.  Kerstin is thriving and surviving because she gets the much needed care provided through Medicaid.

     It's not too late to make your voice heard about healthcare!  Call, text, write, tweet and do it again!

#IAmMedicaid

Does she live at home?

     "Does she live at home?"  When you take your children to the doctor or they have been admitted to a hospital, do the doctors and nurses ask you does your child live in your...their home?  I cannot count the number of times I've been asked that!  Every time I'm asked, I always get a little bit upset.  I often wonder is it because of Kerstin's disability.  Could it be because she is now 12 and cannot do anything for herself?  Could it be the fact that I am a single parent to a child that needs care around the clock?

     Whatever the reason, I think there should be a way of knowing that bit of information without having to ask the PARENT that is sitting right there with the child!  I am pretty sure that if a child is being admitted to a hospital from a nursing facility, that information is readily available on forms and identification!  

     Just this year, back in February, I had a doctor ask me, if Kerstin lived in our home?  YES!! The questioning went further, do you think you will be able to continue to keep her in the home?  I was thinking to myself, "Do you ask other families this?"  If their child can walk and talk and do for themselves, are they asked these kinds of questions?  I told him, "As long as I'm able to do for Kerstin, she will live in HER home!"

     Do you ask or wonder if your friends and family members with their so-called "typical" or "normal" children, if they will keep them in their home?  Do you think you will be able to keep them there?  If it is not a thought that has crossed your mind, then think about that friend that has a little girl in a wheelchair, she can't walk, talk or do the things her peers are able to do.  How many times do you think she's been asked if her child lives at home?  What about the times doctors, nurses and others have wondered how long the child will be able to live at HOME?  

     It happens more than you realize or care to think about.  It hurts to be asked those questions!  It hurts to think of your child not being able to stay in the home they have known.  Some decisions are hard and they have to be made.  That is up to the individual's family, when and if that time comes.  For now,  as long as I am able, Kerstin will live in the home she's been in for 12+ years!

"There is nothing like staying at home for real comfort" 
~Jane Austen

Wordless Wednesday-October 16, 2013