Ethan's Future Health Care

NOTE: Please share this post broadly and contact your representatives in Congress. Each one of us has a voice, a story to share and a vote. This is our story…
Scared. Shocked. Angry. Confused.
We did not want this, We did not ask for this “opportunity;” we did not do anything wrong to deserve this AND we will not run from our obligations as parents to care for our child. However, we cannot afford to cover all of Ethan’s health care costs without help from a large community and our government.
What do Ethan’s future health care options look like?
Ethan will not have the opportunity to receive health care from his employer or pay the premiums for private insurance. Ethan’s significant disabilities will prevent him from finding employment and generating income. we hope we are proven wrong, as this is a very difficult reality to accept.
So, what are his future options?
While he is very fortunate today to be covered by a great employer-sponsored health care plan, thanks to Procter & Gamble, what happens when Ethan is no longer eligible for this insurance?
Remember, today Ethan’s health care costs exceed $1,000,000 per year and it takes three policies to provide for his needs (Private, Medicaid and BCMH). Even with these three policies, there is about $100,000 per year of costs not covered by any of them.
Ethan will age out of BCMH and private insurance.
What will happen if Medicaid is taken away from Ethan, too?
How will his future medical needs get paid for? Will we be placed in the position of having to make health care decisions for Ethan based on the cost? We already know we cannot afford to pay $1,000,000 per year (not even for one year). Ethan has already spent +380 days in the hospital over 4 years. Do we opt to not take him for urgent care at the hospital when private insurance and Medicaid are not available? For reference, ONE DAY in the hospital for Ethan costs $5,000-10,000, depending on his diagnosis and testing needs. If he ends up having surgery (Ethan has had 7 surgeries in the past 4 years), the costs are significantly higher and the hospitalization is longer.
We deal with a significant amount of uncertainty every day, just managing Ethan’s day-to-day care. We do not need the added stress of how to pay for Ethan’s basic medical care, or if our family will be forced into financial ruin.
We think you get the picture.
PLEASE talk with your U.S. Senators and House of Representative member about preserving Medicaid for those who truly need it.
Ethan needs it NOW and will be dependent on it in the FUTURE.
We have and we are. We have talked with the offices of Congressman Wenstrup and Senator Portman, and have left messages with Congressman Chabot and Senator Brown.
Stay Strong,
Alexia and Scott