Impact of 1001 on One Family (5 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.

First of all, my family has never benefited from a Medicaid Waiver. When my son was born in 1986---10 weeks premature and diagnosed with a rare condition which required a tracheostomy and ventilator to breathe, there were no such waiver programs in the state. We had private insurance, but were left with tens of thousands of dollars of out of pocket expenses after his first hospitalization of nearly 6 months.
I was raised by a fiercely independent family----my father, Gordon Gilmer, was an elected official for 29 years, that taught me to “take care of my own”---work hard, pay your bills (and your taxes) and when problems arise---you deal with it. However, the staggering amount of medical bills we incurred was not something you could “manage”. Plus, the hospital wouldn’t even let him come home without 24 hour, round-the-clock nursing, and our insurance only covered a fraction of those expenses. After several years of us making monthly payments, the hospital wrote-off a portion of the uncovered expenses and we negotiated with the home care company a payment plan---which depleted our retirement and savings accounts, so that my son could live at home instead of a nursing home. And, I had to quit my job to take care of my son. Thankfully, my marriage was still intact and my husband was gainfully employed. However, many marriages do not survive this type of pressure—the divorce rate is much higher when you have a child with special needs.
I tell you this to help paint the picture of what families face who have kids with severe medical or developmental disabilities. Had we had a Medicaid Waiver option, my son’s hospitalization probably would have been shorter---because we would have been guaranteed the home nursing support we needed for him to be safe. I could have continued working, at least part time, as was the plan.
We were lucky---my son, although he still has to sleep with a ventilator and has a cardiac pacemaker, is working, attending college and contributing to society. He beat the odds of total disability---but some aren’t as fortunate.
Please tell your legislators that you want to strike Section 139 from the Senate Amendment of HB1001, the budget bill. This language was thrown into the budget bill amendment without any discussion or committee work. Families who benefit from Medicaid Waivers are tax-paying, voting, engaged members of our community and their voice will be heard! Please help be the voice for children with special needs.