Impact of 1001 on One Family (6 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 Joseph was born seven years ago we were sent home with what we thought was a healthy baby boy. It didn't take us long before we knew something was amiss. Joseph was not your typical newborn. He cried nonstop, never slept and had trouble nursing and drinking from a bottle. His growth was delayed and he wasn't developing head control. At four months old, after many doctor visits, ER visits, and failed attempts to help him he was admitted into the hospital for failure to thrive. It was during that hospital stay that Joseph was diagnosed with Schizencephaly. We were told that Joseph could suffer from a magnitude of things ranging from seizures, respiratory issues, developmental delays, physical delays, communication delays, etc. The list never seemed to end. During those dark hours of trying to understand what was happening to our child we also had to think about how we would be able to financially and physically care for him. A nursing home NEVER entered our mind. This was MY child and it was never even a question that I would take care of him no matter what I had to do. But I knew it was going to take a great deal more than I was prepared for. I was walking into unknown territory. I didn't know anyone with a disability. All of my friends and family had typical children. I would have to figure this out on my own. Thankfully the social worker at the hospital signed Joseph up for the Medicaid Waiver waiting lists. I was told it would be several years before his name would come up on the list. I applied for several programs such as Medicaid but was denied due to our income even though I had to quit my full time job to care for Joseph. We were using our private insurance but it only took that one hospital stay to learn that our coverage wasn't as good as we had thought. As time passed and Joseph's development and health became more complex we began to accrue significant medical debt. His bills from medications, specialized formula, specialty doctor visits, hospital stays, etc began to pile up. When Joseph turned five he became eligible for the Aged and Disabled Waiver. This waiver wasn't available to him prior because even though his needs were complex he didn't have a "skilled medical need". At the age of five, because he was non ambulatory, incontinent, and couldn't bath or feed himself he became classified as "nursing home level of care". This waiver was a Godsend to us. Not only did it give us an attendant to help me, it also gave Joseph Medicaid Disability. This allowed us to start the climb out of debt.

Then Mikayla was born. Mikayla is 9 months old and was born 2 months premature. She was 1 lb 15 oz at birth and during her stay in the NICU she was diagnosed with PVL. She had had a stroke while I was pregnant. This was a blow that we never saw coming. I had been monitored very closely during my pregnancy due to Joseph's medical conditions even though there is no known cause for Schizencephaly. The pregnancy was going well and there was no reason to think I would go into premature labor nor that Mikayla was anything but healthy. But for reasons that baffle all the doctors she was born early and with a brain injury. She is also on the Medicaid Waiver waiting lists. It will be 10-12 years before her name comes up on the list. We don't know what her development or health will be like at that time but it is a comfort to know that the waiver will be there to help me keep her in my home where she is surrounded by people who love and adore her.

Medicaid waivers are not an easy resource to understand. The topic is complex and involves many factors. But their are two things that people should remember when trying to understand. (1) The waivers allow families to stay out of bankruptcy rather than having to choose between putting their child in a nursing home or going bankrupt and (2) The waivers allow my children and others the opportunity to be an active member of their family and community. Adults and children with disabilities should not be looked on as burdens to society rather as the gift they truly are to the world. My children have so much to give and contribute and all I ask is that they are given the opportunity to do so. Surely you can understand....Don't you want the same for your child?

Heather Dane, Indianapolis