Five years ago, I went to sleep each night thinking I was the luckiest and happiest person I knew. I was 32 and had a brilliant wife, an adorable infant son and a fulfilling career organizing for social justice. We owned a house in paradisiacal Santa Barbara, Calif. Then I was given a death sentence.
I was told I had amyotrophic lateral sclerosis, or A.L.S., a mysterious neurological illness. I asked my doctor how long I could expect to live. He said three to four years.
Today I am nearly completely paralyzed and am typing these words using technology that follows the movement of my eyes, which are the one body part that I am still able to control well. I have a breathing tube implanted in my windpipe, and to compensate for my failing diaphragm, I’m hooked up to a ventilator 24 hours a day. I am fed through a small hole in my belly.
Living with A.L.S. can be horrendous. But I have a beautiful life. I laugh every day, and I am never depressed. I am still organizing for social justice. My life is good because I live at home with my wife, Rachael, and our two young kids. Most nights before dinner, my toddler, Willow, sits on my lap, and we watch “Sesame Street.” Although I’m not the father I had hoped to be, I’m grateful for each moment with my children. And it’s all possible because I have 24-hour home care.
I can afford this care only because I forced my health insurance company to pay for most of it and we have some very wealthy friends who cover the rest. Private health insurance rarely covers home care. Neither does Medicare. My team of seven caregivers is skilled, reliable and very stable. And that is possible only because we pay them well above the low market rates. Without home care, I would have to be in a nursing home to stay alive. And to be honest, I don’t know if that would be a quality of life that I would be willing to tolerate.
In Japan, where health care is guaranteed, one study found that people with A.L.S. were much more likely to choose to go on a ventilator to extend their life as people with the disease in the United States. This means more Americans with A.L.S. opt to die. I argue it’s because home care is prohibitively expensive and life in a nursing home is so miserable. My doctor’s initial prognosis was based on the assumption that I would not undergo a tracheotomy and receive the home care necessary to survive with a ventilator.
Home care is literally keeping me alive. But across the country, almost a million children, adults and seniors with disabilities sit on waiting lists for Medicaid’s home- and community-based care, in danger of being removed from their homes and sent to live in institutions.
In his jobs and infrastructure plan introduced this year, President Biden proposed $400 billion for home- and community-based care. That’s what’s needed to clear the 820,000-person waiting list and provide professional caregivers — the majority of whom are women of color — with better wages. Funding for home care would also give new choices to the one-tenth of caregivers — most of whom are women — who were forced to leave their paid jobs or retire early to take care of a loved one.
The significantly scaled-back bipartisan version of this plan eliminated the president’s proposal for in-home care funding. Republicans did not support the president’s original proposal, and even some conservative Democrats said we cannot afford it. The fate of the funding now depends on how hard the president, Senate majority leader Chuck Schumer and Speaker Nancy Pelosi fight for that commitment.
Most people want to stay in their homes and communities as they age, so fully funding home care is a matter of ensuring everyone has the choice to live at home. During the Covid-19 pandemic, about 134,000 nursing home residents have died from the disease.
The pandemic has shown the urgent need to transform America’s social contract. We are the richest nation in the history of the world. We have money for endless wars, a Space Force and tax cuts for billionaires. But when it comes to ensuring everyone has basic health care, we can’t seem to scrape together the money.
Our time on this earth is the most precious resource we have. And yet America’s misplaced national choices are depriving millions of disabled people and our loved ones of invaluable years and priceless days.
Recently, with the help of my wonderful home caregiver Izzy, I took my son, Carl, to basketball practice for the first time. When we got home and continued shooting hoops in the driveway, I wept tears of joy. After I was diagnosed, when Carl was only 4 months old, I didn’t think that I would ever get to watch him learn to dribble. But thanks to my caregivers, I can tolerate my paralysis, and I was able to do just that.
It’s now been five years since I was diagnosed, and Carl is old enough to form memories that will last the rest of his life. He will remember me even after I’m gone. But I am not gone yet. And every day, thanks to my home care, I experience the deep love of my children and family. Everyone deserves as much.
Ady Barkan is a co-founder of the Be a Hero organization. A documentary about him, “Not Going Quietly,” was recently released.
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