In 1979, 26-year-old Doris Lentz found a home at Bell House.
Next month, she’s losing it. The residents and staff she considers family, some of whom have been together for 35 years, must scatter.
The dorm-like building that is home to 22 people with cerebral palsy and similar disabilities is closing because of efforts to move people out of institutions. North Carolina says Bell House is too big to qualify for federal money that’s designated to help people live full lives in their community.
Lentz, who is 61, says she knows what institutional life is like. When her mother died, the young woman spent more than three years in a nursing home before coming to Bell House.
“I thought about killing myself,” Lentz says, “but I’m glad I didn’t.”
The residents of Bell House, ages 23 to 83, have healthy minds in severely disabled bodies. Their care is costly; the director calls $50,000 a year per person “bare-bones.”
The government foots most of the bill. Bell House, like care facilities around North Carolina, is feeling the pinch of Medicaid cuts designed to reel in rising costs.
But the biggest challenge is that Bell House doesn’t fit into tidy categories. For years it got Medicaid “waiver” money, through a program now known as N.C. Innovations, to promote independent living. Now the state says it’s too big to qualify, no matter how much it feels like home to residents.
About 50 people around the state have been forced to choose between moving or losing the aid, but Bell House is the only place hit hard enough to close, says Dave Richard, the N.C. Department of Health and Human Services official who oversees the money.
He has visited Bell House and says it’s run by a deeply caring staff, with residents who want to be there. But Bell House is caught in the federal and state push to move people into smaller settings. “We hate to see this happen,” Richard said Friday.
After a two-year struggle to keep Bell House alive, its directors voted to close by Oct. 31. State officials are helping residents search for new places to live.
Rhonda Christenbury, a Charlotte barber, and her mother, Ann Scott, have been looking at group homes and assisted living centers for Lentz, a relative they call “cousin.” They’d like to see her come to Salisbury, where most of the family lives and where Lentz spends holidays.
But Lentz wants to stay in Greensboro. It’s her home now. And she wants to remain close to her Bell House family. “I know it’s not going to be like Bell House,” she said of her next home, “but I hope it’s going to be similar.”
Building a home
Bell House has its roots in an era when people with disabilities were segregated. In the 1960s, Greensboro had a cerebral palsy school that drew students from across North Carolina, says Bell House Executive Director Jeni Kirk.
Marie Bell, the mother of one of those students, wanted a place where graduates could live and be as independent as possible. People with cerebral palsy have damage to the part of the brain that controls motion. The condition ranges from major impairment of speech and all daily activities to milder disabilities – think RJ Mitte, the actor who played Walt Jr. in “Breaking Bad.”
“They have a bright mind and a body that just doesn’t work for them. They just want to get out of Dodge and live on their own,” Kirk says.
Bell spent 12 years finding land, raising donations and lining up federal support. Bell House opened in 1979.
Lentz is among four original residents still living there.
The rooms look like college dorms from the 1970s, with cinderblock walls painted in bright colors of the residents’ choosing. Lentz’s decor is heavy on Panthers paraphernalia.
Margaret Ferguson, a medication technician who has done a variety of jobs at Bell House, started working soon after Lentz moved in.
Her work is more than a job. She visits residents when they’re in the hospital. Sometimes she’s among the last people they see in this life. She says when she arrived 33 years ago, “I knew I was meant to be here.”
There are relative newcomers, too, like 67-year-old John William “Buddy” Shubert, who moved from a Charlotte nursing home 31/2 years ago. He enjoys the simple things, such as making a shopping run to a nearby Walmart. “You have more freedom here,” he said.
Cynthia Bell, a professor of occupational therapy at Winston-Salem State University, has been bringing students to Bell House for a decade. They even did a quality-of-life survey, which validated what Bell (no relation to the founder) has observed.
“One of the things that Bell House has done so well is understand the folks that live there,” she said. “They’ve allowed them to find independence. It’s been a wonderful model of care, I think.”
The Bell House budget is complex.
Medicaid and federal HUD money is at the core, Kirk says, with United Way support, grants and donations fleshing out the government aid.
But the N.C. Innovations waiver program is what became Bell House’s undoing. It’s federal money that passes through the state, designed to keep people with disabilities out of nursing homes and other institutions. The goals are twofold: improving lives and saving money.
At first that program was a boon to Bell House. Five residents qualified. The program brought in about $150,000 a year, which paid for staff to spend one-on-one time helping eligible residents meet personal goals. That allowed the home to spend more of its United Way and grant money on the other residents.
Bell House also had a waiting list full of people who qualified. A few years ago, directors decided to expand. They’d gotten permission to add 18 beds and launched a capital campaign, quickly garnering a $1 million start-up donation.
About two years ago, the federal government cracked down on the waiver money. States were ordered to stop spending it on residents living in institutional settings.
Bell House’s status was murky. Nursing homes, mental institutions, hospitals and “intermediate care facilities” were definitely out. People living in group homes and assisted living facilities could be eligible, as long as those facilities provided private sleeping quarters, freedom for residents to set their own schedules and open access to visitors.
Bell House is licensed as an adult care home, a category that covers many assisted living homes. It met the requirements for individual freedom and privacy.
But Richard says the mandate was clear: The program isn’t intended to cover people in facilities as big as Bell House. State policy says new group homes must house no more than three people to be eligible, though people living in homes with up to six can keep their funding.
North Carolina identified about 50 people who would have to give up the money or find a new home, Richard said, including the five at Bell House. With 22 people, it was much too large.
“We fought viciously and diligently to get an exception to that rule,” Kirk recalls. But ultimately the expansion plan was scrapped. Still, she and the board vowed the home wouldn’t close.
A slow death
For the past two years, since the federal money ended, state officials have helped fill the gap and worked with Bell House on making sure residents would have a good home. The Bell House board looked for other sources of money and kept trying to get an exception.
In July, Kirk says the board hired a consultant who could size up the situation without emotion. The verdict: You’re losing $15,000 to $20,000 a month. This can’t last long.
On the morning of Aug. 26 the board met at Bell House. The vote was tearful but unanimous: We’ll close in 60 days.
Kirk, who had laid out the situation to a reporter matter-of-factly, lost her composure when she recalled what came next: Summoning the residents and staff to break the news. “I don’t think I’ll ever stop crying,” she said, wiping her eyes.
Kirk sent out a news release that night. Amid the explosion of news coverage and outrage, some hoped for a last-minute reprieve.
U.S. Sen. Kay Hagan, a Democrat, is a longtime supporter and former board member. She and her family spent many Christmas mornings making breakfast for residents.
Gov. Pat McCrory, a Republican and former mayor of Charlotte, has been known to frequent the Latta Arcade barbershop where Christenbury works. She talked about bending his ear to save Lentz’s home.
But by mid-September, it was increasingly clear there would be no reprieve.
“While I am devastated by this news, I will continue to support Bell House’s residents during this time, and my office stands ready to help them make a smooth transition to new homes that can provide them with the level of care that is right for their needs,” Hagan said in a statement to the Observer Friday.
Two of the younger residents, Amber Lawson and Chris Baldwin, went out last week and got tattoos: the Bell House logo, a stylized person in a wheelchair with arms raised in triumph. They may have to move, but they’ll never forget.
Kirk talks about holding onto hope until she turns out the lights. But she has also brought in counselors from the Hospice facility next door.
After all, the family is dealing with a death.