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

Medicaid in Alabama!

     Medicaid in Alabama!  Cuts to medicaid.  Lawmakers in the state saying it is too costly, they're not the only ones saying that, some citizens of the state say the same as the lawmakers that represent them.  Back in the Spring of this year, I was asked by my program director if I would attend a press conference at the state house on Medicaid.  She told me to prepare a 2 minute statement on how Kerstin has benefited from medicaid and how possible cuts would impact her life.  My first thought was 2 minutes to tell how a lifetime of much needed insurance has helped save my daughter's life and secondly, me, her mom, saying sharing some of our life story in front of a room full of reporters, law makers, advocates and strangers!  

     How was I going to do this?  As always, with Kerstin by my side and my older sister being our personal photographer.  I shared just some of what potential cuts could mean for Kerstin.  In order to get there, you'd have to know her story.  Kerstin has had 4 surgeries, 3 in one year, just a few years ago, she's had a few hospital stays, thankfully the last one back in May was not from an illness at the time but for a seizure study.  Aside from hospital stays, Kerstin requires numerous medicines and medical supplies to live...survive!  There are medicines for seizures, spasticity, along with her nutritional and feeding needs.  Without medicaid, it would be extremely difficult and near impossible to supply all of these needs for Kerstin on a part-time income.  
     I reported that the Pediasure Kerstin was on at the time cost about $11 per six pack, if you bought them in Walmart, that was just for the regular Pediasure not the specialized kind that she needs because of stomach sensitivities.  Pricing this on a site like Amazon, the cost is significantly higher, for a 24 pack, it is priced at $136.78.  That case would not last her a week!!   Because Kerstin is a growing child and her nutritional needs have changed, the new therapeutic nutrition she requires has changed as well, it is much higher in cost, $209.97 for a 24 count case.  Imagine having to pay those costs out of pocket and on a weekly basis just so that she could eat.  These costs do not even touch her medicines, or things like her feeding tubes, extension sets, syringes and diapers (wipes aren't even covered by medicaid).  Medicaid, makes all of this possible for Kerstin's survival.
     Along with all of her medicines and nutritional needs, Kerstin has a number of therapists, doctors and specialists.  These necessities are paid through medicaid.  Kerstin and patients on medicaid go to the same doctors, therapists, drug stores and use the same medical suppliers as patients with private insurances.  The thing that seems to be left unsaid is that, if medicaid is severely cut, that means that these same agencies, organizations and medical professionals may make cuts or leave the state altogether.  If that happens, my child is and people on medicaid are not the only ones without needed medical suppliers and providers.  These cuts could have negative and potentially harmful impacts throughout.  
     There are so many misconceptions out there about medicaid.  Some being that, the program is misused and that many people on it actually do not need the services.  I beg to differ, especially when it comes to my daughter.  As I said, in an earlier interview, she is a constituent of this state and needs all of the benefits because of her medical needs.  I am a part-time worker, part-time student, full-time mom and now a home school educator to Kerstin.  
     Just this month, Kerstin and I were interviewed again for continued input on medicaid in our state and it's potential cuts.  It is my hope that humanity is at the forefront of this story.  She was filmed at therapy, a much needed resource paid for by medicaid, then she was filmed at 'therapy'...her routine after therapy trip to Target (not paid by medicaid, lol).  

That portion has not been aired, dates to be announced. 

Reports:

WSFA :I am Medicaid' campaign aims to show lawmakers the humanity of what's at stake

Raycom News Network

Anniston Star