Photo provided Ady Barkan attends the debut of his documentary ‘Not Going Quietly’ earlier this month.
CHARLESTON — For Ady Barkan, gaining access to home health care saved his life. Barkan is now taking his message to West Virginia to encourage U.S. Senators Joe Manchin and Shelley Moore Capito to maintain proposed home healthcare funding in the $3.5 trillion budget reconciliation package.
Barkan was diagnosed with ALS in 2016 after a successful career as a lawyer and a political activist for progressive causes.
According to the Mayo Clinic, ALS — amyotrophic lateral sclerosis — is a disease that attacks the nervous system and causes the shutdown of muscles in the body, even paralyzing the muscles used for breathing. It was once known as Lou Gehrig’s disease.
As his ALS symptoms worsened, Barkan had to fight with his insurance companies to cover home healthcare. It’s a story he tells in “Not Going Quietly,” a documentary released Aug. 13 in several theaters across the U.S. and will be available on streaming services Oct. 13.
In an exclusive interview Tuesday from his home in California via video live-chat, Barkan used an optical sensor system that allows him to select characters to type answers to questions, which are then read by computer since Barkan can no longer speak.
“When I was 32, I was diagnosed with ALS — a mysterious neurological disease — that over the course of just a few short years has left me almost completely paralyzed,” Barkan said. “As a result, I required 24-hour home care in order to stay alive.
“I’m particularly lucky that I was able to successfully force my health insurance company to pay for most of the care,” Barkan continued. “I would probably need to be in a nursing home away from my wife and two young kids in order 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.”
Now 37, Barkan continues to advocate for causes, including the need for expanded health care, especially home healthcare. Barkan has testified before Congress, met with presidential candidates, and even confronted former Republican U.S. Senator Jeff Flake on an airplane over support in a provision of the tax cut plan pushed by former President Donald Trump that increased insurance premiums.
Barkan supports the $3.5 trillion budget conciliation package being written by Democrats in the U.S. Senate. The Budget reconciliation package is based on President Joe Biden’s American Families Plan that includes $400 billion over eight years for home-based and community-based healthcare funding, as well as incentives to encourage employment in the home healthcare field.
Congressional proposals for that $400 billion include an increase in federal Medicaid matching dollars for home-based health and financial incentives for states to adopt programs, helping cover administrative costs, and matching grants. Lawmakers also want to make the Money Follows the Person program permanent with annual funding.
“Across the country, 820,000 seniors and disabled people still sit on the waiting list for the Medicaid home care program in danger of being ripped away from their homes and forced to live in unsafe nursing institutions,” Barkan said. “During the pandemic alone, 133,000 people with disabilities have died in nursing homes in the United States. So, what’s at stake with this funding is nothing less than human lives.”
It remains to be seen if Senate Democrats will keep the budget reconciliation at $3.5 trillion or shrink down the final price tag. Both U.S. Senators Joe Manchin of West Virginia and Kyrsten Sinema of Arizona voted in favor of the procedural vote to begin work on the budget reconciliation package, but both have spoken out about the final price tag.
“We are the richest nation in the history of the world,” Barkan said. “We have money for the Space Force, for tax cuts for billionaires, for an enormous military. It is within our power to fully fund home and community-based care and the entirety of the reconciliation package. It is just a matter of reorienting our priorities to value basic healthcare and actual human life.”
The budget reconciliation package only needs a simple 51-vote majority to pass the Senate, not needing a single Republican vote. Capito has been an outspoken opponent of the budget reconciliation plan, calling it a “tax and spending spree.”
Barkan called out Capito for supporting the budget reconciliation process in 2017 to pass the Trump tax cuts. Those tax cuts were paid for in part by eliminating the individual mandate penalties within the Affordable Care Act. According to the Congressional Budget Office, removing those penalties would decrease the number of people with health insurance by 13 million by 2027 and result in a 10-percent increase in premiums in most years of the decade.
“I also find it baffling that Senator Capito is now opposed to reconciliation because in 2017, she was eager to use it to pass the Trump tax bill that threatened the healthcare that I and millions of others need to survive,” Barkan said. “Now, when we have the chance to pass vital programs to help west Virginians, she’s against it. It’s clear the Senator is not on the side of working people and families.”
While Capito does not support the budget reconciliation package, she has shown support for home-based healthcare. Both Capito and Manchin announced Wednesday more than $5 million in funding for West Virginia’s Money Follows the Person program.
“Given West Virginia’s aging population, I have always made it a priority to work to provide the resources that support access to quality care and health services our elderly population relies on,” Capito said in a statement. “Oftentimes, the best way to do this is through home- and community-based health services, as opposed to institutional care, such as nursing homes.”
“Ensuring West Virginia’s elderly population and individuals with disabilities have access to quality care, whether at home or at community-based care facilities, has always been one of my top priorities,” Manchin said. “I am pleased HHS is investing in the Money Follows the Person program, which will give West Virginia additional funding and greater flexibility to support West Virginians who rely on Medicaid.”
The co-founder of Be A Hero, Barkan has teamed up with West Virginians to tell similar stories to his own. One of those stories is of Scott Lancianese of Mount Hope. A coal miner with a family history in the mines going back three generations, Lancianese had a serious stroke in 2014 that left him unable to speak or walk. He credits access to home healthcare for helping regain the ability to speak and walk.
“Congress needs to invest in home and community-based services to help everyone that’s in my situation,” Lancianese said in a statement.
“Scott has said that without home care, he probably wouldn’t be alive today,” Barkan said. “There are 66,000 West Virginians like Scott who depend on home and community-based care. And over 15,000 home care workers in the state, many of whom teeter on the brink of poverty, given the profession’s low wages. With the reconciliation package, we’ll invest in all of these West Virginians and their families.”
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Home healthcare advocate uses life story to urge federal funding - The Inter-Mountain
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