Wednesday, July 05, 2017

Having Children: The Gumball Lottery

When you decide to have children, you are playing the lottery.
It's like sticking a quarter in a giant gumball machine...
you just don't know what you are going to get.

The healthiest of those among us can attest to infertility, to miscarriages (even multiple miscarriages), children that would immediately develop unforeseen medical problems, children that would develop concerning developmental or social issues as they started to grow up, children that would develop cancer, and children that would become disabled from an accident. And even those of us who have adopted know that our children come with equal risk of medical concerns. There are no promises when you decide to become a parent. If you have a truly healthy child, you have won one of the most important lotteries in life. It was nothing you did or didn't do - you didn't do anything to "earn it", you are just fortunate.

In my case, I pulled a losing lottery ticket - the sour gumball. I had dreams of my unborn baby to become a future athlete, or mathlete. Never in my hopes and dreams did I expect to have a child with medical issues or otherwise. I did everything right - no caffeine, no drinking, no smoking, no over the counter medications, no antibiotics, I ate right and took all my prenatal vitamins and exercised as prescribed by my OB. I was thrust into a life I didn't ask for or want. But I will pull myself up by my "big girl panties" and do what this momma bear needs to do.

I have spent most of Braden's life advocating for him. I am his voice. He cannot speak, or walk or eat or do anything on his own.
(Photo from 2009 or 2010 before we got his hospital bed - paid for by Medicaid)

The past few years have been incredibly intensified. I have had to spend time I don't have, energy I don't have, and emotions I can't spare. I have already been fighting an uphill battle against my own state legislature. I have testified at the state capitol in several house and senate committees. I have sent hundreds of emails. I have made hundreds of phone calls.

All of this is just to fight to keep what we already have in place. No more, no less. All to keep his current medicaid waiver in place.

But Obamacare took some things away from us, and we took it - SILENTLY - because the changes were for the "greater good" of others who needed access to healthcare. Meanwhile, our private insurance rates have gone up annually, and our coverage has gone down. My son no longer gets about 4 medications that were part of his "mito cocktail" because we can no longer afford them. Medicaid no longer covers them, and private insurance no longer covers them.

And now, the federal government wants to repeal and replace Obamacare. You might assume I am for a new plan. But the new plan being proposed "The Better Care Reconciliation Act" (The ACA/AHCA/BCRA) terrifies me. The cuts are draconian. They are severe and cruel. Our government is not responsible for our healthcare, we have private insurance and we work two jobs each to provide for our family. But if this plan is enacted, we will be bankrupt, we will have to quit all our jobs and live off welfare because we can no longer afford our insurance, and our son will die because he will no longer have access to the things that keep him alive. You see, many friends of mine (special needs parents) have been FIRED because their companies can no longer afford to carry them on their company insurance - it keeps their premiums down to not have medically complicated families on their plan. There are NO LEGAL PROTECTIONS for us. This is NOT dramatic. This is REAL LIFE and REAL DEATH.

Some quick highlights of this plan for you:
* It cuts the Medicaid program we are already on.
* Our already increasing private insurance rates will skyrocket even higher
* . Experts expected that this would cause a death spiral, where only the sickest patients purchase coverage and premiums skyrocket.
* Maternity care and mental health will also be gutted
* Caps on lifetime limits of care
* Insurance can cut you off once you reach a limit they determine
* If you don't get it for US, what would happen if your parent/child/family member was in a tragic car accident and required extraordinary rehabilitation and care? What if your family member got cancer and needed treatments/medications your insurance would no longer cover? What if your parents/grandparents get older and less agile and need more medications, personal care or a nursing home? THIS WILL BE YOU TOO!!
* You can read about it here

This is a good place to look at an overview if you want something concise and accurate to look at.

Another viewpoint from Disability Scoop can be found here.

If you don't understand why it's so scary for those of us who didn't get a winning gumball in this child rearing lottery, let me share this with you. Braden's Medicaid waiver allows my family many opportunities we wouldn't otherwise have, and it helps my family not go bankrupt by paying for things that he requires to stay healthy and at home with his family.
A family that is not caring for a person with a disability and special health care needs may not understand just how expensive it is to care for their loved one.

This is a compiled list of things that neurotypical kids don't require and that neurodiverse children do, that Medicaid helps pay for. The cost for the items below are without insurance, and even if private insurance did pay for some of the items the total amount of money still adds up and ultimately affects the family's financial stability. And if caps go away, we will surely face bankruptcy providing life support for our sweet son who didn't deserve this life he got in this lottery.

-Custom Wheelchair: $9K
-Hospital Bed: $3K
-Bed Sore Prevention Mattress: $500
-Shower chair: $2K
-Suctioning machine: $700
-Travel Suction Machine: $500
-High pressure nebulizer: $2K
-Ventilator: $14K
-InHome Oxygen: $2K a yr
-PulseOx: $3K
-Chest Percussion Therapy Vest: $15K
-Cough Assist: $5K
-Heated Humidifier: $200
-Feeding tube supplies and formula: $400 a month
-Suctioning supplies: $200 a month
-Ventilator supplies: $700 a month
-Misc medical supplies: $500 a month
-Tracheostomy supplies: $400 a month
-28 prescription medications: $6K a month
-Diapers and wipes: $250 a month
-Random hospital admits: $2K-$500K
-11 specialty doctors checkups: $4K a year
-PT, OT, Speech: $10K a year
-Yearly EEG: $3K
-Yearly MRI: $4K
-Yearly EKG and Echo: $2,500
-Quarterly X-rays for urology: $2K
-Yearly sleep study: $2500
-Annual Bronchoscopy: $1,500
-Skilled Nursing: $46K a year
-Direct Support Professionals: $24K a year




Do you have a heart? Do you have compassion for your fellow man?
Do you realize that if you have not been touched by medical complications in your family that you have WON THE LOTTERY so far? It's nothing more than PURE DUMB LUCK if you haven't had to face anything difficult in the healthcare arena. You are not special, you are stupid lucky. Count your blessings and open your eyes to the fact that you are lucky, and one day you WILL BE OLD, OR SICK. How will YOU want to be treated?

Can I please ask you to contact your Senator and tell them? The humans of America are counting on you.

Find your Senator here.

#IamMedicaid #Medicaid #TrumpCare #ACA #AHCA #BRCA #ObamaCare