My 6-year-old daughter Esmé is medically fragile, which means she has special health care needs. While she doesn’t have a clear diagnosis, we know that she has four separate genetic mutations that cause a suite of symptoms, including seizures, developmental delay, and heart and kidney abnormalities. Overall, life has been extraordinarily difficult for Esmé.
Last week the United States Congress narrowly passed the American Health Care Act (AHCA), also known as Trumpcare, a bill that has the potential to make my daughter’s life much more difficult in many ways. The bill includes major cuts to Medicaid, which we rely on to supplement Esmé’s private insurance, as well as cuts to Medicaid-funded programs, such as special education. Furthermore, the bill erodes federal protections for individuals with pre-existing conditions and risks driving up Esmé's healthcare costs substantially.
My Congressman, John Faso, in the New York 19th district, voted for this legislation. Following his vote, he has been lambasted on social media by people in his district. I have tried to speak with him about healthcare reform since well before the first attempt at a healthcare reform vote in March. But Congressman Faso has been rather difficult to get in touch with. So far, he has refused to appear at open Town Halls, instead opting to appear at televised, closed-door, ticketed events.
Over the last few months I have been very focused on meeting with Congressman Faso, making multiple calls a week to his various offices and writing an open letter to him, which was published on Romper. At one point I was berated by one of his DC staffers, who insisted I was not in the district (I am). After endless phone calls and emails, we finally got a meeting with him, and I was able to tell him exactly what I thought of his vote.
When I introduced Congressman Faso to Esmé, I told her, “This is your Congressman. He represents you in Congress in Washington, D.C.” At the time, I did not say out loud what I wanted to say: that she and Mommy were there to talk to him because he wasn’t doing a good job representing her interests, and that he wasn’t standing up for what is good and right. But I said it to him by the end of our meeting.
When Congressman Faso met with us, he was surprisingly pleasant. We repeatedly tossed her drool-covered toys between us as I fought back tears and lobbed my frustration, anger, and confusion at him. I read my prepared statement to him. (You can read the full statement here.) I was impressed by his composure.
However, I was not impressed by the answers he had for me.
There is a general misconception about the populations Medicaid serves. Although the media often frames Medicaid as a welfare program exclusively for low-income Americans, it is worth noting that almost 75% of Medicaid expenditures are spent on the elderly and individuals with disabilities. In his district, Congressman Faso has almost 26,000 constituents like Esmé, who are disabled and receiving some form of Medicaid benefits.
Some of the services Medicaid provides to people with disabilities include caregiving hours, prescription drug and medical equipment coverage, home modifications for accessibility, and supplementing special education in schools, to name a few. For those of us raising medically fragile children in states like New York that have Medicaid waiver programs, Medicaid offers supplemental insurance, overing only the things that our insurance company will not, such as the copays on doctors visits, medications, and the overnight nursing care that allows my daughter to avoid staying at the hospital for an extended period of time.
Thanks to Medicaid, I have overnight nursing care, so I don’t need to pause before I walk into my daughter’s room in the morning, terrified she might have had a seizure in the night, or that I will find her not breathing and cold, as some of my friends have found their own children.
There are many children who are far more fragile than my daughter who live in states that do not participate in Medicaid waiver programs. Some of these states, like Florida, have lengthy waiting lists. Thanks to Medicaid, I have overnight nursing care, so I don’t need to pause before I walk into my daughter’s room in the morning, terrified she might have had a seizure in the night, or that I will find her not breathing and cold, as some of my friends have found their own children.
Trumpcare will cut approximately 10 percent from the Medicaid budget, or $840 billion. Congress passed this bill without a report by the Congressional Budget Office (CBO), but we now know the CBO scoring says that over the next decade, the bill will leave 23 million Americans without health insurance. For high-cost individuals like Esmé, these cuts could be absolutely devastating in many areas of their lives. It could reduce their access to medications, as well as their ability to remain in their homes.
When I met with Congressman Faso, I told him that I was horrified that he would vote along side the likes of Congressman Brooks from Alabama, who, during an interview with CNN, suggested that “people who lead good lives” don’t have pre-existing conditions, so they won't have to pay extra for coverage. Instead of asking my Congressman what types of naughty things he thought my daughter must have done to her body when she was just a mass of a few dozen cells, I simply reminded him that Esmé could easily have been his child, or his grandchild.
Keeping someone like Esmé alive requires a network — not just family members and friends, but also a local community and a compassionate (and healthy) country.
I also reminded the Congressman that disabled individuals of all income brackets rely on Medicaid waiver programs. They are an essential safety net for families like mine, who could easily be bankrupted by the extra medical costs. It is not an exaggeration to say that Medicaid keeps our family afloat — and we are comfortably middle-class, so I don't want to think about people in more dire financial circumstances.
Congressman Faso listened to my statement and told me that he was touched by our story. He said that he wouldn’t’ debate me point by point, and that it was clear we had philosophical and political differences. He drew me a graph that showed me that Medicaid would still get more money each year than the last, just not as much more. He also explained that he was working on legislation to carve out some protections for the children on Medicaid who are severely medically fragile. I told him that following his vote the other week, I was skeptical about his good intentions. But I agreed to be in touch with his staff about his legislation.
Having a medically fragile child gives you some valuable insight into the human heart and its capacity for empathy and kindness. It gives you insight into community, into what people are actually willing to put on the line for those like Esmé, whose health and safety rely on the goodness of others.
People like Congressman Faso have a choice. They can look the other way. They can make excuses not to be there for constituents like Esmé. Or they can stand up for what is good and right.
Even in the best-case scenario, taking care of a child with a complex medical condition is exhausting. I’m constantly trying to find a way for Esmé to attend school safely. I'm constantly managing her caregiving team, planning for her future, and, yes, accessing proper medical care. My child has almost died in my arms, and I spend every single day of my life in service of her health. It is not something I can do alone. Keeping someone like Esmé alive requires a network — not just family members and friends, but also a local community and a compassionate (and healthy) country.
People like Congressman Faso have a choice. They can look the other way. They can make excuses not to be there for constituents like Esmé. Or they can stand up for what is good and right.
I hope that our visit to Congressman Faso opened his eyes. I hope that we spurred him to action. I hope that he will think of my daughter the next time he has to vote on legislation that will affect her. After our visit, he wrote me a letter thanking me for the meeting. The first line of the last paragraph said that he would pray for Esmé and our family. To which I’d say, simply: Don’t pray for us, or others like us, Congressman. Instead, find the courage to vote for us.
