I am Ady Barkan. Five years ago, I felt like the luckiest person I know. I was 32, I had a brilliant wife, a perfect baby, and a fulfilling job. And then I was diagnosed with ALS, a mysterious neurological disease, and given three to four years to live.
Today, I’m almost completely paralyzed, hooked up to a 24-hour ventilator, and can only communicate using technology that tracks the movement of my eyes, which are the only parts of the body I’m still capable of. to control well. Living with ALS can be horrible. But I have a good life. And that’s because I have 24 hour home care that allows me to live at home with my family.
I can only receive this care because I managed to force my health insurance company to pay most of it, and we have rich friends who help with the rest. Private health insurance rarely covers home care, and neither does health insurance, so without my extra resources 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 put up with.
I’m Scott Lancianese, a third generation coal miner from Mount Hope. Seven years ago, in 2014, I had a massive stroke and lost my ability to speak and walk. The doctors told me that I would not live, that I would not have a normal life, and that I could not walk, talk or communicate with my loved ones. All of this has changed thanks to home caregivers. The home care I received saved my life; I was able to regain my ability to talk and walk at Christmas that same year. Without home care services, I probably wouldn’t be alive today.
In the United States, nearly one million children, adults and seniors with disabilities are on waiting lists for the Medicaid home care program, at risk of being torn from their homes and coerced. to live in dangerous institutions. During the pandemic alone, 132,000 Americans with disabilities died from Covid-19 in healthcare facilities.
In his economic plan, President Biden proposed $ 400 billion for home and community care, as that is what is needed to provide for the 800,000 people on the waiting list, thousands of whom live in Virginia- Western, home care and providing our grossly underpaid caregivers, the majority of whom are women and people of color, with better wages.
There are currently 66,000 West Virgins who depend on home and community services, and over 15,000 home care workers provide services. Funding for home care will also boost the economy by allowing people forced out of paid employment to care for a loved one with the opportunity to re-enter the workforce.
Senator Shelley Moore Capito and none of her Republican friends support the Build Back Better program, and even some Democrats say we can’t afford it. It is simply disconcerting because we are the richest nation in the history of the world. We have money for wars, for spaceships, for tax cuts for billionaires. But when it comes to making sure everyone has basic health care, our leaders can’t seem to muster the money.
Scott and his wife Vickie told me they desperately need Senator Joe Manchin and elected officials of Congress to fully fund home and community care and support healthcare workers and those who depend on this care program. essentials in West Virginia.
This must change. The majority of voters in both political parties support full funding for home care, and almost all people with disabilities prefer home care to institutionalization. It is time for our elected officials to listen to people like me, Scott and Vickie.
Our time on this earth is the most precious resource we have, and thanks to my home care I was recently able to celebrate my son’s fifth birthday and Scott can live a safe and dignified life at home with his wife Vickie. Now is the time for Congress to fully fund home care so that millions of other people with disabilities and our loved ones can also experience these invaluable family days.