I’m Ady Barkan, and in 2017, I confronted U.S. Senator Jeff Flake of Arizona on a plane and begged him to be a hero and vote against the GOP tax bill that threatened to take away the health care I need to survive.
Senator Flake voted for the bill and is no longer in office, but four years later, millions of people like me and Phoenix mom Allison Lefebvre are still struggling to secure health care for our families. Our fight now is for home care.
I require 24-hour home care because I have ALS, a neurological illness that, over the course of just a few short years, has left me nearly completely paralyzed and hooked up to a ventilator. Private health insurance rarely covers home care, and neither does Medicare, so I can only afford home care because I successfully forced my health insurance company to pay for most of the costs.
Otherwise, I would have to be in a nursing home away from my wife and our two young children 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. This is a decision that all too many Arizonans and Americans face every single day.
I’m Allison Lefebvre and my sons, Miles and Caleb, rely on 24-hour home care. They were both born with the most severe form of Spina Bifida, a common neural tube defect that is considered to be the most disabling neurological birth defect. After spending the first five months of his life in the hospital undergoing eight surgeries, Miles now relies on a ventilator to breathe.
Miles and Caleb will never “get better” and I won’t be around forever to care for my sons. Home care is essential to maintaining the complex care plans that they require. And yet, every 90 days, we meet with state agencies for evaluation. We spend our time in constant battle with these agencies because they look to cut the crucial and life-saving services my sons need.
Without our team of caregivers, I cannot bear to think of what life would look like for Miles and Caleb, or my other two children who also deserve love and attention. Home and community-based services must be fully funded so that children with disabilities like mine can lead meaningful and safe lives.
Home care is a critical service for thousands of Arizonans. There are currently 158,000 Arizonans who depend on home and community-based services, and over 67,000 home care workers in the state.
But while the need for home care is great, acquiring services is out of reach for too many. Across the United States, almost a million people sit on the waiting lists for Medicaid’s home care program, in danger of being forced to live in unsafe nursing institutions, where 133,000 disabled Americans have died from Covid during the pandemic.
We need the full, proposed funding for community-based care because that’s what’s needed to provide the nearly one million people on the waiting list with home care services. This funding will allow older and disabled Arizonans the chance to live at home with their families. At the same time the landmark investment will provide our grossly underpaid caregivers, the majority of whom are women and people of color, with better wages, and have the double benefit of creating more than 18,000 new jobs in Arizona each year over the next 10 years.
Allison, Miles and Caleb, and the thousands of home care workers and recipients in Arizona need Senators Kyrsten Sinema and Mark Kelly, as well as the rest of Arizona’s elected officials in Congress, to fully fund home and community-based care. If they vote “Yes,” thousands of Arizonans will be able to live safely and with dignity at home, surrounded by their loved ones.
We all know that House Republicans Biggs, Gosar, Lesko and Schweikert are standing in the way of the Build Back Better agenda. It is simply baffling because why would they stand in the way of caring for disabled and older Arizonans?
After all, we are the richest nation in the history of the world. We have money for an enormous military, we give tax cuts to billionaires, and companies making record profits pay zero taxes. But when it comes to ensuring everyone has basic health care, too many of our representatives in Washington would rather protect the rich and powerful rather than help the disabled and aging community in Arizona.
The majority of voters in both political parties support fully funding home care, and nearly all people with disabilities prefer at-home care to institutionalization. It’s time our elected representatives listen to people like Allison and her sons, to people like me, and to the thousands that want to stay at home rather than being ripped from their families.
Thanks to home care, I was recently able to celebrate my son’s birthday. Caleb and Miles are able to live safely and with dignity at home with their family. Now is the time for Congress to fully fund home care so millions of other disabled people and our loved ones can also experience these priceless days with family.
Ady Barkan is co-founder of the Be A Hero organization. A documentary about him, Not Going Quietly, was released last week.
Allison Lefebvre is mom to Caleb and Miles Lefebvre and is the founder of Something So Worth It, a nonprofit to support children with disabilities and their families. They live in Phoenix.