Impact of 1001 on One Family (9 of thousands)

FV Indiana members are sharing what the impact of proposed changes to Medicaid Waivers will be in their lives. We share their stories, and encourage each of you to continue contacting your Legislators.

My daughter, Maddie was born with spina bifida. Years later, we received a diagnosis of autism. Our daughter has always been our top priority. We have always done what is best for her. Without Medicaid, we don’t know how we could have paid for her medical needs.

My daughter is only 12 years old. In those 12 years, she has had 12 surgeries for her spine, bladder, hip and eyes. All of them helped increase her quality of life. None of them would have been possible without the Medicaid Waiver. At one point before we got the waiver, I had to take a voluntary pay cut to keep her on Medicaid. I had no insurance through work and my husband was not employed. Medicaid was our only way of covering her medical cost. Now that my husband is working and making a good wage, I can stay home to care for our daughter. According to the income guidelines, we make too much money to stay on Medicaid. My husband makes less than $30,000 a year. Somehow, we are supposed to pay for all of Maddie’s medical needs AND keep a roof over our heads? This is impossible. Her catheterization supplies alone cost almost $5000 a month.

If this bill is passed, my husband and I have limited solutions. All of which break my heart. One solution is to put Maddie on my husband’s insurance. With the increase in premiums and our out of pocket expense we would incur, my husband would have to work the maximum allowed by the FAA. He works as a flight attendant and is already gone 4 t 5 days a week. If he increases his hours, he would be gone 6 days a week and we would never see him. The other solution is to get a divorce. Is this the goal of our representatives? I know I am not the only parent who has had t consider this. Why should I have to break up my happy family just to make sure my daughter gets the help she needs?

I don’t think that they have realized the lengths parents will go to for their children. We won’t just “suck it up and move on”. Parents will take pay cuts, quit jobs and, yes, even divorce if that is what it takes to get their child what they need. This will increase the people needing welfare, food stamps and other assistance. Where would the savings be then?
Sarah Kennedy
Lebanon Indiana