I am Ady Barkan. Five years ago I felt like the happiest person I knew. I was 32, had a brilliant wife, a perfect little son, and a fulfilling job. And then I was diagnosed with ALS, a mysterious neurological disease, and had three to four years to live.
Today I am almost completely paralyzed, connected to a ventilator 24 hours a day and can only communicate using technologies that follow the movements of my eyes, the only parts of the body that I can still control. Living with ALS can be terrible. But I have a good life. And that’s because I have 24 hour housekeeping that allows me to live at home with my family.
The only way I can get this coverage is because I successfully forced my health insurance company to pay most of it, and we have some wealthy friends who will help fund the rest. Private health insurance rarely covers home care, and neither does Medicare. So without my additional resources, I would have to stay 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 accept.
I’m Scott Lancianese, a third generation miner from Mount Hope. Seven years ago, in 2014, I had a major stroke and lost my ability to speak and walk. The doctors told me that I was not living, that I would not have a normal life, and that I would not be able to walk, speak, or communicate with loved ones. That all changed because of home nursing. The home care I received saved my life; By Christmas of the same year I was able to regain my ability to speak and walk. Without Home Care Services, I would probably no longer live today.
In the United States, nearly one million children, adults, and the elderly with disabilities sit on waiting lists for Medicaid’s home care program, at risk of being ripped out of their homes and forced to live in unsafe facilities. During the pandemic alone, 132,000 disabled Americans died of Covid-19 in care facilities.
In his economic plan, President Biden proposed $ 400 billion for home and community care as it is needed to provide home care to the 800,000 waiting list, thousands of whom live in West Virginia, and our severely underpaid caregivers, most of them are women and people of color with better wages.
There are currently 66,000 West Virginians in need of home and community-based services, and over 15,000 home carers provide services. Financing home care will also boost the economy, as people who have to quit their paid work to care for a loved one will have the opportunity to return to work.
Senator Shelley Moore Capito and none of her Republican friends support the Build Back Better agenda, and even some Democrats say we cannot “afford” it. That’s just amazing, 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 scrape together the money.
Scott and his wife Vickie told me that they urgently need Sen. Joe Manchin and elected officials in Congressional to fully fund home and community care and to support caregivers and the people who depend on this basic care program in West Virginia.
This has to change. A majority of voters in both parties are in favor of full home care funding, and almost all people with disabilities prefer home care to residential care. It is time our elected officials listened to people like me, Scott, and Vickie.
Our time on earth is the most precious resource we have and, thanks to my home care, I recently celebrated my son’s fifth birthday and Scott can live safely and dignified at home with his wife, Vickie. Now is the time for Congress to fund home care in full so that millions of other disabled people and our loved ones can enjoy these priceless days with their families as well.