A case manager for another insurer routinely called my son’s physical and speech therapists to badger them, at one point actually screaming at each of them. She told Rob’s speech therapist that Rob already had a feeding tube — what was the point of trying to help him eat at all? It was exhausting to battle the insurance company for every need.
And we had what was considered “bene” private insurance. Imagine that. We gave up vacations, home improvements, after school activities for our children, and instead poured all our money into health insurance.
After a decade of the Affordable Care Act
, my family’s life has significantly improved
. We’re no longer terrified we’ll lose our home
, which we’ve made wheelchair accessible for Rob
. Before the ACA
, we regularly switched insurers to avoid maxing out on annual or lifetime caps
. We now know we can stick with the same
, good plan
After Rob’s visit to the Supreme Court, he wrote a poem. These are its closing lines: “better bad awful / awful bad, like the Supreme Court building is beautiful / this is the chamber where the Justices hear cases.” Rob often puts together strings of adjectives in his poems, and you can hear his concern about the court’s power in the transition from “better” per “awful bad.” Allo stesso tempo, he acknowledged the awe and hope he saw in the building itself that day. Rob captured the fear and hope with which all of us with pre-existing conditions and high medical needs regard the Supreme Court balance.
Let me bear witness to the terrifying times prior to the ACA. We cannot go back. I feel so strongly about this that I’ve joined Little Lobbyists, a family-led organization that advocates for children with complex medical needs and disabilities. Their mission, as is mine, is to ensure that no family has to endure uncertainty about health care again. I’ve become their blog manager, helping to share the stories of families like mine. Rob and I have accompanied the Little Lobbyist team to Capitol Hill, at press conferences, and at presidential campaign events.
The confirmation of Amy Coney Barrett represents an unprecedented threat to the ACA and at-risk families like mine. Our country is in the middle of a pandemic. Now is not the time to play politics with the lives of millions of Americans.