Her new life isn’t perfect. Last winter she argued with the landlord to turn up the heat in the Philadelphia building where she now lives. Once, she missed a doctor’s appointment because the doorbell downstairs was broken and she didn’t hear the shuttle driver buzz her. And sometimes her little apartment gets lonely.
But Arlene Johnson, 67, wouldn’t dream of trading her new life for her old one. “Not in a million years,” she says.
After languishing for two years in a nursing home, Johnson is living on her own. She’s one of many long-term institution residents regaining independence, their numbers projected to soon swell into the thousands. This growth is happening in large part because more federal and state programs are designed to help them do it. Between 2001 and 2007, Medicaid spending on nursing home care rose a modest 9.8 percent, according to the National Center for Assisted Living. Its spending for home- and community-based care, in contrast, soared by 81.5 percent. And a federal program that encourages states to use Medicaid dollars to help nursing home residents transition back to independence received a five-year, $2 billion extension in the new health care reform bill.
But longtime nursing home residents often face big hurdles to life on their own. Determining whether they’re capable can be a complicated task, requiring a thorough evaluation of circumstances that may seem beyond control.
Out of control
For Johnson, life spiraled downward after she developed a serious infection following knee replacement surgery and had to have one leg amputated. Soon, her husband died; she was alone. Johnson tried to stay on in the row house where she’d raised her family, but flights of steps in front and back made it almost impossible. When she returned to the hospital for another operation, she reluctantly agreed to recuperate in a nursing home.
“I didn’t need to be there; I could look after myself,” Johnson says. “Another woman had lost a leg just like me, and she refused to get out of bed. All she did was eat and watch television. I didn’t want to end up like that.”
As the months passed, however, returning to life on her own began to seem impossible. Simply finding a place to live presented an almost insurmountable obstacle. “I had to find a place that didn’t have steps,” she says. Newspaper ads don’t include such details. You have to go see for yourself. “How was I going to do that?”
Then, one day last year, she heard about a woman in the nursing home who was leaving to live on her own, thanks to a counselor who helps people make the transition back to the community.
“I waited for him in the corridor,” Johnson remembers. “And I told him I wanted to be next on the list.”
The counselor’s name is Nathan Bowman-Johnston. He works for the Philadelphia Corporation for Aging, and its Nursing Home Transition program finds resources for people who are older or have disabilities but want to live independently. Many people taken to a nursing home “may not even have a wallet or an ID,” Bowman-Johnston says. “If they end up staying more than a month or two, they may lose their home when they stop paying rent. We often have to start from scratch, getting a birth certificate or some sort of identification, setting up a bank account, finding a place for them to live.”
Arlene Johnson had it relatively easy. Her finances were in good order. Her Social Security checks were still being deposited into her own bank account. Because she qualified for Medicaid, some of the money that would have gone to the nursing home could be used to help pay for the services she would need—home health aides, delivered meals, a personal emergency-response medical system.
First, she needed an apartment with wheelchair access. Bowman-Johnston located a vacant one-bedroom unit in a large senior complex with an elevator. He helped Johnson fill out the application, but after it was accepted, plenty of complications remained. Her son-in-law, a contractor, widened the bathroom door to accommodate her wheelchair. The carpeting was replaced with hardwood to make it easier to wheel herself around. Grab bars were installed in the bathroom.
While Johnson was in the nursing home, thieves stripped her old row house of many possessions. “Basically I had to start over,” she says. Bowman-Johnston helped round up furniture and kitchen supplies and arranged for delivery. A nurse at the nursing home bought Johnson a microwave.
Bowman-Johnston arranged for a home aide to help Johnson with chores. He also set up weekly visits from a nurse. Johnson was lucky enough to find a doctor who made house calls, although she would have to travel to her surgeon’s office for checkups. Medicaid would pay for all medically related travel. For other transportation, public service was available on demand for a small fee.
While making the arrangements, Bowman-Johnston stayed in close contact with Johnson. “We have to manage expectations,” he says. “What will you do in this situation—your aide doesn’t show up and there’s no food in the refrigerator? We have to make sure people are really motivated to do it.”
When Arlene Johnson finally unlocked the door of her new apartment, she remembers, “I felt like I was getting my life back again.”
Even after six months on her own, Johnson struggles sometimes. Using public transportation, especially if she has to shop at several stores, is difficult. She often asks her daughter to drive her to get groceries. “That’s not easy for me, being dependent on other people.” Standing on one leg when she has to cook for herself isn’t easy either.
And there have been unexpected crises. One morning the fire alarm in the building went off—a false alarm, as it happened. But for a panicked moment she wasn’t sure if the fire was real and whether she could get out on her own.
“You do get frustrated at times. You pray a lot,” she says. “You have to be patient. But you also have to be very, very determined.”
Peter Jaret lives in Petaluma, Calif.
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