CHARLESTON – For Ady Barkan, having access to home 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 keep the proposed funding for home health care in the $ 3.5 trillion budget reconciliation program.
Barkan was diagnosed with ALS in 2016 after a successful career as a lawyer and political activist for progressive causes.
According to the Mayo Clinic, ALS – amyotrophic lateral sclerosis – is a disease that attacks the nervous system and causes muscles in the body to shut down, 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 health care. It’s a story he tells in “Don’t go quietly,” a documentary released on August 13 in several theaters in the United States and will be available on streaming services on October 13.
In an exclusive interview on Tuesday from his home in California via live video chat, Barkan used an optical sensor system that allows him to select characters to type in 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 – which in just a few short years left me almost completely paralyzed”, said Barkan. “Therefore, I needed 24 hour home care to stay alive.
“I am particularly fortunate to have succeeded in forcing 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 children 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 put up with.
Now 37, Barkan continues to advocate for causes, including the need to expand healthcare, especially home healthcare. Barkan has testified before Congress, met with presidential candidates and even confronted former Republican U.S. Senator Jeff Flake on a plane for supporting a provision of the tax cut plan proposed by former President Donald Trump that increased taxes. Insurance premium.
Barkan supports the $ 3.5 trillion budget reconciliation package drafted by Democrats in the US Senate. The budget reconciliation package is based on President Joe Biden’s U.S. Plan for Families which includes $ 400 billion over eight years to fund home and community health care, as well as incentives to encourage employment. in the field of home health care.
Congressional proposals for the $ 400 billion include an increase in the federal Medicaid matching dollars for home health and financial incentives for states to adopt programs, help 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 elderly and disabled people are still on the Medicaid home care program waiting list, at risk of being torn from their homes and forced to live in dangerous nursing homes,” said Barkan. “During the pandemic alone, 133,000 people with disabilities died in nursing homes across the United States. So what is at stake with this funding is nothing less than human lives.
It remains to be seen whether Senate Democrats will keep budget reconciliation at $ 3.5 trillion or lower the final price. 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 voted on the final price.
“We are the richest nation in the history of the world”, said Barkan. “We have money for the Space Force, for tax cuts for billionaires, for a huge army. It is in our power to fully fund home and community care and the entire reconciliation program. It is simply a matter of reorienting our priorities to value basic health care and real human life. “
The budget reconciliation package only needs a simple majority of 51 votes to pass the Senate, without needing a single Republican vote. Capito has been a staunch opponent of the budget reconciliation plan, calling it “Tax and spending frenzy”.
Barkan called on Capito for supporting the budget reconciliation process in 2017 to pass Trump’s tax cuts. These tax cuts were paid in part by eliminating individual mandate penalties under the Affordable Care Act. Removing these penalties would reduce the number of people with health insurance by 13 million by 2027 and lead to a 10% increase in premiums in most years of the decade, according to the Congressional Budget Office.
“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 health care I and millions of others need. to survive”, said Barkan. “Now when we have the chance to pass essential programs to help West Virginia, she opposes it. It is clear that the honorable senator is not on the side of workers and families.
Although Capito does not support the budget reconciliation package, it has shown its support for home health care. Capito and Manchin both announced more than $ 5 million in funding on Wednesday for West Virginia’s Money Follows the Person program.
“With West Virginia’s aging population, I have always made it my priority to work to provide the resources that support access to the quality health care and services our senior population depends on,” Capito said in a statement. “Often the best way to do this is through home and community health services, as opposed to institutional care, such as nursing homes. “
“Ensuring that West Virginia’s older population and people with disabilities have access to quality care, whether at home or in community care facilities, has always been a top priority for me.” said Manchin. “I am pleased that the HHS is investing in the Money Follows the Person program, which will give West Virginia additional funding and greater flexibility to support West Virginia people who depend on Medicaid.”
Co-founder of Be A Hero, Barkan has teamed up with West Virgins to tell stories similar to his own. One of those stories is that of Scott Lancianese of Mount Hope. A coal miner with a family history in mining for three generations, Lancianese suffered a severe stroke in 2014 that left him unable to speak or walk. He credits access to home health care for helping regain the ability to speak and walk.
“Congress needs to invest in home and community services to help everyone in my situation,” Lancianese said in a statement.
“Scott said without home care he probably wouldn’t be alive today” said Barkan. “There are 66,000 West Virgins like Scott who depend on home and community care. And more than 15,000 home care workers in the state, many of whom are on the brink of poverty, given the profession’s low wages. With the reconciliation package, we will be investing in all of these West Virgins and their families. “