Thank you for having me here today. My name is Jamie Davis Smith. I’m a proud MomsRising member from Washington, DC and the mother of four young children, including my wonderful 11-year-old Claire. Claire was born with a serious genetic disorder. Her heart is in the wrong place and part of her brain is missing. She is unable to speak, walk steadily, use the bathroom alone, or feed herself. She requires close supervision and tremendous support from family and health care workers to get through each day.

Not surprisingly, Claire has had countless medical needs over her short life. In fact, her younger siblings have spent so much time accompanying her to doctor’s appointments and hospital stays that they refer to Children’s Hospital as “Claire’s Hospital.”  

Claire gets her primary insurance through my husband’s employer – it’s a fantastic, comprehensive plan, but it doesn’t come close to meeting her needs. Her primary insurance has refused to cover a hearing aid, a wheelchair, a bed she could safely sleep in, and therapies her doctors say she needs. My husband and I live comfortably, but we don’t earn nearly enough to pay for these essential services.

Thankfully, Medicaid came to our rescue. Claire qualifies for Medicaid under the Katie Beckett Waiver, a program instituted by President Ronald Reagan to cover children who would otherwise have to be institutionalized. Thanks to Medicaid, Claire can live at home with her parents and her siblings. She can attend school and receive the personalized care she needs to learn and grow . She has a personal care attendant to help her safely perform her basic daily functions. And thanks to Medicaid, she has had multiple lifesaving surgeries and medications over the years, without bankrupting our family.

Medical research and care has advanced significantly over my lifetime. Doctors can now cure some of the conditions Claire was born with that would have killed her not long ago. Yet this state-of-the-art medical care could become unavailable to kids like Claire if Medicaid funding were cut. Without Medicaid, we would likely return to an archaic time when institutionalized care was the norm and children like Claire did not have high survival rates -- not due to their underlying conditions, but to their inability to access lifesaving care.

We never planned to have a child with disabilities. Nobody does. But we were so glad that when we did, those services were available to our family. The Graham-Cassidy health care repeal bill would gut Medicaid. It would undermine the program that is a lifeline for Claire and children like her. My family contributes financially to our economy.  We willingly contributed to funding Medicaid and other safety-net programs long before Claire was born. In return they have been there when we needed them. In return, we were able to lean on programs that allow Claire to have a safe and fulfilling life, while remaining with her family.

If Graham-Cassidy becomes law, Medicaid would be gutted and millions of vulnerable people -- including Claire -- could lose the health care that keeps them alive.

If Graham-Cassidy becomes law and my husband were to lose his job, Claire would be uninsurable for the rest of her life due to pre-existing conditions.  

If Graham-Cassidy becomes law , my family would not be able to afford the maternity coverage we would need if I became pregnant again.

We need to decide if we will be a country that helps the most vulnerable among us, or a country that leaves them behind -- a country that allows people with disabilities to live with dignity or a country that lets people with disabilities be forced into institutions and die prematurely.

I urge every senator to think about these questions and vote ‘no’ to the Graham-Cassidy health care repeal bill, for the sake of my family and all families in America. Thank you.