Dear Democratic members of the House,
I am writing to you in the midst of debate on the most consequential piece of legislation in over half a century. The Build Back Better bill before you could be a victory for the ages, unleashing yet unseen possibilities for people in every area of American life. Home care is just one fraction of this sweeping bill, but I want to highlight the personal stakes of this particular part of the investment.
As many of you know, I rely on 24-hour home care to survive. Without it, I would need to be in a nursing home, away from my wife and our two young kids. I don’t know if I could tolerate life in an institution, but millions of seniors and disabled people aren’t given any other option. This is unacceptable, especially in the middle of a pandemic in which nearly 136,000 people have already died from COVID-19 in nursing homes. Mothers, brothers, fathers, sisters, parents, siblings, friends, cousins, neighbors, dead because we have not invested in the care they need to live.
We are not, frankly, investing in any of the basic resources people in our country need to thrive, from health care to child care to housing. People, families and communities are suffering as a result, left to fend for themselves, closed off from their full potential. But it doesn’t need to be this way. You all have the opportunity to set us on a different path. That’s why we must not let this moment pass us by, and we must not let history repeat itself.
More than a decade ago, years before I was diagnosed with ALS, I was in my early 20s and looking forward to the transformative possibilities under Democratic control of the federal government. But you all remember very well what happened next; indeed, many of you were there. Despite a popular president and Democratic majorities in both chambers, our agenda went almost nowhere. We didn’t win labor law reform, immigration reform or a climate change bill. We didn’t even win a public health care option. The promise of the Obama presidency went unfulfilled as 2009 quickly became 2010, and then 2010 quickly became 2016.
Today we are at yet another inflection point in the history of our country, at the center of an even greater crisis than we faced a decade ago. So I urge you to seize the moment now. This is our chance. Honor the thousands of people who died in nursing homes with action. Ensure that those of us who are still living — disabled people and seniors — and home care workers are given the care and wages we need to live safely and with dignity. Almost a million people are on Medicaid’s waiting list for home care, in danger of being forced into nursing institutions. The people of America no longer have time to wait for some future solution, or a further delayed promise.
On the day we are born and on the day we die, and on so many days in between, all of us need medical care, and many of us will need home care. Five years ago, I was a healthy 32-year-old with a newborn son. Today, I am 37, and almost completely paralyzed. We cannot predict what will happen to each of us in this life, but it is within your power, as members of Congress, to guarantee home care to people who need it. New Hampshire Sen. Maggie Hassan, whose own son is disabled and has benefited from home care, made the case recently. “I don’t think it’s a conservative, moderate or liberal value to support independence and self-determination. That’s supposed to be what all Americans hope for each other,” she said. I agree. Everyone who needs it deserves home care.
I know this is a challenging time, and passing the most important piece of economic legislation since FDR’s New Deal will take courage. But courage is what brought many of you into politics and into Congress. Hold fast, and do not forget the people who are depending on you. I’m not sure how the next election will shake out, but one thing is clear: If you, as Democrats, do not deliver on the promise for fundamental change right now, you will lose.
I don’t believe in miracles, but I do believe in democracy. I believe we should order our world based on decisions that we make together; that our fate as individuals is tied inextricably to the fate of others; that political struggle is timeless, essential and liberating. The American people elected you to save our democracy, to protect life and to keep families together. At this crossroads in our country’s history, the power is now in your hands to answer their call. The time is now for you to meet the moment and build a more just and equitable future.
Ady Barkan is the co-founder of Be A Hero, a progressive political action committee that advocates a fair and just U.S. health care system. A documentary about him, “Not Going Quietly,” will be available on streaming platforms beginning Oct. 5.