I Oppose Amy Coney Barrett’s Nomination to the Supreme Court (by Shannon Striner)
Sienna Striner. She has short brown hair, a big smile, and wears a yellow t-shirt with the words, “I am Sienna. I can & I will. Just watch me.”
I am the mother of two beautiful girls, Sienna, age 4, and Haley, age 7. Sienna is a remarkable little girl who loves life. She is a smiley, energetic, empathetic ray of sunshine. Her favorite activity is spending time with her big sister, whom she adores. If we let her, she would watch Sesame Street all day. Elmo is a way of life in our house. She loves music, books, therapy, and playing outside. She is mischievous, funny, and beautiful. She has the ability to bring smiles to our family on the worst of days. We wouldn't change one thing about her. Sienna happens to have an extra copy of her 21st chromosome, also known as Trisomy 21 or Down syndrome.
When I see President Trump trying to repeal the ACA and take services and medical care away from our community, it breaks my heart. Once again, we as parents are forced to suit up for battle and prove that our children are worthy of health care. Health care is a right. Not every parent of a child with disabilities has the endless resources that Judge Amy Coney Barrett seems to have. As a fellow mom of a disabled child, I would expect Judge Barrett to fight for the ACA alongside us, but her record demonstrates just the opposite.
Sienna's diagnosis came as a surprise to us. After I endured four miscarriages, she was our miracle baby. Our miracle baby surprised us on the day of her birth with her diagnosis and a heart condition. We were completely unprepared to raise a child with a disability. After I delivered her, a kind nurse explained to me how lucky we were to have Sienna here in Pennsylvania after the passage of the Affordable Care Act (ACA).
Sienna was born with multiple pre-existing conditions that insurance could have refused to cover prior to the ACA. The nurse also explained that as a disabled child in Pennsylvania, Sienna qualified for Medicaid--which is in danger of losing significant funding if the ACA were to be repealed. At the time, in the fog of Sienna’s diagnosis, I didn’t realize the significance of that conversation. Over time, the depth of her words revealed themselves.
As I entered this new world of early intervention, therapies, and medical needs, I began to realize just how much of a financial toll this would have taken on us if it weren't for the protections of the ACA and Medicaid. Custom orthotics, outpatient weekly therapies, overnight hospital stays, adaptive strollers, walkers, safety sleepers, echocardiograms, communication devices, bloodwork--the list goes on. One after the other, I opened the explanation of benefits statements, and when I saw the hard costs of all the services we needed, I was shocked. Sienna receives seven weekly therapies.The costs of those alone are $3,400 per week. Without the ACA, her therapies and medical care would have quickly exceeded a lifetime cap. Sienna would have been uninsurable for the rest of her life and left without access to life-saving care.
Shannon Striner with her daughters Haley and Sienna. Shannon has long blond hair & wears a bright pink sleeveless shirt and white jeans. Haley has long brown hair & wears a sleeveless white dress with a butterfly print. Sienna wears a dress with the same fabric in a blue background. The family is standing outside in front of a picket fence.
We are fortunate to have Medicaid helping with the significant additional expenses not covered by our private insurance. Without Medicaid, we could never afford it all, and Sienna would suffer in the long run. We’d be forced to make tough decisions: like what's more important, that Sienna eats safely and communicates clearly or that we keep a roof over our heads?
I am proud to be Sienna’s mom. This journey is full of wonder, joy, and unimaginable love. It changes life's most ordinary moments into the extraordinary. But with constant attacks on our health care, it's also agonizing work, hard decisions, and constant advocacy. It gets exhausting fighting for your child, having to prove their value to the world.
I want to personally thank you, Senator Casey, for your efforts in advocating for our families. You have made a huge difference in our lives. As an everyday Mom, I am also here to demand that you and your colleagues continue to fight for the ACA so that our kids can access the health care they need to not just survive, but thrive. Everyone loses if our children are unable to reach their fullest potential.
Shannon Striner is a member of Little Lobbyists. She lives in Pittsburgh, Pennsylvania. This blog is adapted from remarks she presented to Senator Bob Casey on October 1, 2020.