My Life Is in Joe Manchin’s Hands—Does He Care?

Senator Joe Manchin has always said he listens to, and needs to hear from, those whose lives in West Virginia will be directly impacted by his decisions on legislation. Manchin has repeatedly said he would take into account how President Biden’s Build Back Better Act would affect the Mountaineer State population. This includes whether he would support fully funding home and community-based services (HCBS), which the framework President Biden laid out on Tuesday provides $150 billion for.

Passing the Build Back Better Act and its historic investment in HCBS is our nation’s best chance to improve the lives of disabled people, seniors, care workers, and their families. Congress must not miss this once-in-a-generation chance to make needed investments in home care and the caregivers who provide it.

For families like mine, doing so is literally a choice between life and death. But don’t just take my word for it. Between all the intense negotiations, ads on the airwaves, and congressional reporters shouting questions at him, it’s safe to say the very last thing Manchin wants to hear from is another “out-of-stater telling West Virginians what is best for them.”

Senator Manchin, Scott Lancianese lives with his wife Vickie and dog Winnie in Mount Hope, West Virginia. Scott was a coal miner for 38 years. During that time, he had one serious accident followed by a severe stroke seven years ago. After three relatively short stints at a local rehab center, Scott was able to come home, thanks to home and community-based services. Scott had a voice caregiver, a PT caregiver, an occupational therapy caregiver, and a nurse that came to his house once a week, all of which allowed him to progress steadily. The alternative would have been to send him to a nursing home.

Vickie credits caregivers home-and community-based services with helping Scott get back to where he is today. It also allows the couple to spend the holidays in their own home alongside their visiting kids, grandkids, and their dogs, which they love to spoil. In the community, Scott is affectionately referred to as the “Mayor of Maple Fork” because he knows everybody’s business and likes getting out and visiting with everyone. If he were institutionalized none of this would have been possible. His message to Manchin is that Congress must invest in home and community-based services because “care is essential.”

Let’s talk about Tracy Wood, who lives in Wheeling, West Virginia, with her six biological, adopted, and foster kids, including her son Gavin, who has a traumatic brain injury. Tracy has two nurses, which she makes clear is the biggest struggle for her: finding people who can help.

To keep a good nurse, they need to be able to be paid a 40-hour a week wage. They need paid benefits. They need to have paid time off. They need to have health care. Every single nurse Tracy’s ever had has a second job. There is no reason they would have to spend 40 hours a week with her child helping her and then have a second job on top of that, which takes away from their families.

Without the community- and family-based services, Tracy would lose her job. Her other children would suffer because taking care of Gavin would consume 100 percent of her time. The unacceptable alternative would be to institutionalize him—she says it’s terrible to think what that would do to such a precious soul. Tracy said as she gets older, she’s going to depend on home and community-based services for him to be a part of her family. Echoing Scott, she implores Manchin to invest in these services because “Care is essential.”

Every person deserves to live safely and with dignity, yet sadly here at home, that fundamental right is not extended to all. Nationwide, millions of disabled people and seniors do not have access to home care. More than 820,000 adults and children are currently on Medicaid waiting lists for HCBS.

It’s beyond shameful that in the richest country on earth, countless Americans are forced to live in fear of being ripped away from their families and forced to live in institutions where during the pandemic over 138,000 disabled children and adults have died of COVID-19.

With so much on the line for those of us receiving home and community-based services, many of us would love nothing more than to give Manchin an earful. However, due to COVID restrictions, making our voices heard in a show of force is not even a remote possibility. So I say this to him:

The choice is right in front of you: fully fund home care or continue the deadly status quo. This can’t wait. Lives are on the line.