I used to think America’s health care system was fine. I was single, with a teaching job, with good benefits. In fact, I wished that I had more money in my pocket as opposed to the health insurance I accessed maybe once a year. That all changed when I became a mother…
Despite doing everything right during my pregnancy, my child was born with two rare genetic syndromes. As she struggled to survive, my husband and I struggled to figure out how we were going to meet her long term needs. She was approaching half of our lifetime cap for private insurance before we even got to take her home from the hospital. And when she did come home, we still had out of pocket costs for specialized formula, specialized equipment, etc. Adding to our financial stress was the fact that I needed to quit my job in order to take care of Grace.
Fortunately, in her first year of life, a social worker helped us obtain the Aged and Disabled waiver under Indiana’s home and community based services. It allowed her to access Medicaid Disability via Senate Bill 30, even though our income of one teacher’s salary had made her previously ineligible. Medicaid paid for home nursing, enteral nutrition, assistive technology, incontinence products and many other services that our private insurance would not cover. The waiver provided much needed nursing-level respite for us.
We still worried about maintaining creditable coverage so she had access to private insurance even with her pre-existing conditions. Any thoughts of my husband changing jobs were always dominated by what the private insurance benefits would be for Grace. We still struggled to pay for her other expenses…and we were lucky. Most families are still waiting for Home and Community Based Services. Indiana has waiting lists for most services. Middle class families find that they make too much money for many programs because the programs never consider the costs of raising a child with a disability.
I imagine many of you will read this and be thankful that this doesn’t resemble your life. I am glad it doesn’t…for now. Most of us will experience some level of disability in our lifetime, even if it’s just through aging. We’re saving the state money by caring for our child at home instead of placing her in a nursing home or institution. I’m also certain she’s an asset to society because she’s received the supports she needs to thrive.
The Affordable Care Act provides states with critical new dollars toward achieving a goal of supporting everyone who can live at home or in community-based living the supports to do so. We hope this means that no matter where we live in the US, Grace can have access to what she needs without waiting years for it to be available.