Impact of 1001 on One Family (4 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.

When our child was born with two rare genetic syndromes, she was in the hospital for four months struggling to survive. My husband and I were struggling with how we were going to meet her immediate and long term needs. He is a teacher and I had to quit work to care for her. We had private insurance, but she was a “million dollar baby.” We were quickly approaching our private insurance policy’s lifetime cap, and our out-of- pocket costs were staggering.
We did not consider a nursing home for her. We wanted her home with us, where she belonged. But we needed help. Our private insurance stopped paying for home nursing, and it never covered her specialized nutrition and other needs. Thankfully, she received the Aged and Disabled waiver when she was less than a year old. This allowed us to access Medicaid for her despite our modest income.
We opted to continue to pay the premiums on our private insurance to continue to take responsibility for her care. However, we desperately needed Medicaid to cover the many items insurance would not. With this combination of supports, we watched her develop and thrive.
Without this support, however, our family would have been lost. Our daughter’s medical expenses, even with private insurance, would have escalated literally beyond our actual income. Is this the type of society we wish to live in? Where parents who work hard and play by the rules are forced to choose between bankruptcy or placing a child in a nursing home? Consider that for a moment: a child in a nursing home…
Our legislators are pushing a story-line that paints our Medicaid waiver as an extravagant expense, a luxury item being doled out to people who do not need such lavishness. Nothing could be further from the truth. Our waiver does not equal a life of luxury, for us or for our daughter. It allows her to one of the most basic human rights: the dignity to be raised at home and live among the people who love her. Tough economic times call for tough decisions. But attempting to make up the shortfall, to rectify the reckless and irresponsible economic actions of others, on the backs of our most vulnerable citizens, should not be an acceptable option under any circumstances.
Jennifer Akers
Westfield