A tracheostomy takes away most people’s voice. But not Ady Barkan’s.
Barkan, the co-founder of the Be A Hero political action committee, has dedicated his life to advocating for progressive health care measures and for all Americans to receive the care they need at home.
In 2016, at the age of 32, Barkan received a diagnosis of amyotrophic lateral sclerosis (ALS) and was told he had three to five years to live. About a year later, he confronted former Arizona Sen. Jeff Flake on an airplane about a tax bill that Barkan believed would limit vital health care services. He filmed the encounter—and it went viral.
Be A Hero, founded in 2018, is named for his plea to Sen. Flake, and he is still working to amplify personal stories in the face of injustice. Recently, he has been arguing for the inclusion of homecare in the federal infrastructure bill. He is also getting attention for a documentary on his life, called “Not Going Quietly,” which is showing in select theaters and will air on PBS in January.
He sat down with HomeCare to share his thoughts on recent homecare legislation.
HOMECARE: How has homecare benefitted you and your family?
BARKAN: Since undergoing a tracheostomy, I require a ventilator to breathe. And so, I now rely on a team of caregivers for 24-hour homecare. My team of caregivers enables me to live at home, where I get to be an active participant in my family’s lives. Homecare allows me to work with my team at Be a Hero, fighting for health care justice. Without in-home care, I probably would need 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. So, homecare is literally keeping me alive. But across the country, almost 1 million disabled children, adults and seniors sit on waiting lists for Medicaid’s home- and community-based care, in danger of being ripped away from their homes and forced to live in unsafe institutions. We need the full, proposed funding so that we can clear the 820,000-person waiting list for Medicaid’s home care services and bolster the caregiving workforce by creating nearly a million new jobs.
HOMECARE: What are your thoughts on the infrastructure measures aimed at home and community based services? Since they didn’t pass initially, what should take their place?
BARKAN: We are pushing Democrats [in Congress] to act boldly to support homecare and fully fund it in the final budget. We’re seeing such strong support for homecare from Democrats because they realize it’s not only critically necessary, but also incredibly popular. In fact, a recent Data for Progress poll showed 77% of voters, including 66% of Republicans, support fully funding home- and community-based services.
But to fully achieve health care justice in America, we need to overturn the patchwork, for-profit health care system that we have today. The cruelty of our for-profit health care system is by design. And it has succeeded in failing all of us, except of course the CEOs it is set up to enrich.
Only a single-payer system would possess the scale and resources necessary to guarantee home- and community-based services for all. The federal government currently requires states to fund nursing home care for everyone eligible. This is not the case with regards to home- and community-based services. And because states manage their own homecare programs through Medicaid, eligibility requirements and services available vary widely across states. It’s by default and design that so many Americans who require care are forced into unsafe institutions like nursing homes. But under a Medicare for All system, home- and community-based services would be required to be covered and prioritized over institutional care. This is the goal, and yet again, another reason why we need Medicare for All now.
HOMECARE: What are your thoughts on the recently introduced Choose Home Care Act? What else are you watching?
BARKAN: I appreciate that the Choose Home Care Act would provide seniors with the opportunity to receive care at home through Medicare, instead of being forced into unsafe nursing homes. Nearly 133,000 disabled people died in nursing homes from COVID-19 during the pandemic. And even outside of the context of this past year, nursing homes are dangerous institutions where patients are merely warehoused, and isolated from their loved ones. Homecare makes it possible for me to lead a safe and independent life where I get to make meaningful contributions to society. We all deserve this much.
As I mentioned, I and my organization Be A Hero are intensely focused at the moment on securing full funding for home- and community-based services in the final budget bill in Congress so that every senior and disabled person can live safely and with dignity at home.
I’m also keeping an eye on efforts in Congress to lower the Medicare eligibility age from 65 to 60 and strengthen coverage to include vision, dental, and hearing care.
HOMECARE: Who are the biggest champions in Congress for a better health care system? Is there anyone with whom you’ve developed a good working relationship?
BARKAN: I’m deeply grateful to Congresswoman Debbie Dingell and Senator Bob Casey who are currently championing the Better Care Better Jobs Act in Congress to fully fund home and community-based services. I have a positive working relationship with each of them, and have interviewed them both publicly, which you can find online. Congresswoman Pramila Jayapal is also a fierce advocate in the House for strengthening and expanding Medicare.
On Medicare for All, Sens. Bernie Sanders and Elizabeth Warren have been outspoken advocates, and I’m in contact with both of them as well. Thirteen other senators joined them in co-sponsoring the most recent Medicare for All Act in the Senate, and more than half of the Democratic Caucus cosponsored the legislation in the House, so we’re lucky to have many champions for a better health care system, but not enough to get Medicare for All over the finish line just yet.
HOMECARE: What does the future of care in the home look like to you? What about health care over all?
BARKAN: For me, the ideal future for home care is one in which Congress, in the next month, approves full funding for home- and community-based services so that all of the nearly 1 million people currently on the waiting lists for Medicaid’s homecare program can access the care they need, and care workers can finally make a truly livable wage. In the richest nation in the history of the world, we can afford to provide every senior and disabled person with the care they need to live safely and with dignity, and in the future, I hope this right is guaranteed to all.
More broadly, I hope we move toward a more fair, efficient and effective health care system, which I believe is Medicare for All. A Medicare for All system would deliver to everyone living in America the high-quality care that we deserve, save the American people enormous sums of money, and eliminate the administrative waste and immoral price gouging by pharmaceutical and device companies. Medicare for All is the moral and rational choice. I hope we will achieve it someday.