ALLENTOWN, Pa. - Independence can creep up on you. Judy Bowman found that out when she spilled the tea on herself one Saturday night last spring, about a year after she moved into a special apartment building here for people with disabilities. She had been visiting another tenant down the hall when "a whole pitcher of iced tea ended up on me."
It could have been more than an inconvenience: she has Charcot-Marie-Tooth disease, an ailment that causes slow degeneration of the muscles in the limbs, forcing her to use a wheelchair.
In the past, Ms. Bowman would have called her aide for help, but she didn't want to bother him over the weekend. So she guided her motorized scooter back to her apartment, took off her leg braces, undressed and got into a motorized lift that carried her into the bathroom, where she showered and washed her hair. She picked up the wet clothes, put them in the laundry basket, put on a nightgown and got into bed.
The process, full of trial and error, do-overs, frustration and triumph, took four hours, and she didn't get into bed until 3:30 in the morning.
Recalling that night, she said, "You can't imagine how happy I was." It was the first time she had been able to take a shower on her own in 25 years. "Geez. It was like, 'I'm free!' "
"Free" is what the Supported Independent Living program is about, said Sally Gammon, the chief executive of Good Shepherd Rehabilitation Network. The hospital built the complex of 18 apartments as an alternative to a nursing home for people who are disabled but crave a measure of self-determination.
Renters must be at least 18 years old and have a physical disability, impaired mobility or a traumatic brain injury.
People living with diseases like cerebral palsy or multiple sclerosis may prefer to live outside the completely dependent world of a nursing home, but they would probably have trouble living in standard houses or apartments, with their many barriers to access - awkward knobs and handles, for instance, and counters designed for adults who can stand.
Cobbling together funds from the federal Department of Housing and Urban Development, the affordable housing program of the Federal Home Loan Bank of Pittsburgh and private donations, the hospital was able to erect the $4 million building in 2003 with $2.1 million in so-called assistive technologies.
There are small things that, taken together, make a difference. Motorized slings carry people from their beds to their bathrooms and over to their wheelchairs. Counter height can be adjusted, and the counters are low enough to reach from a sitting position. The oven doors open to the side, and water taps and water temperature are controlled with push buttons instead of faucets.
The washer-dryer is a single unit so that heavy, wet clothes don't have to be moved. In some apartments, tenants can turn lights on and off, answer the phone or open the door with a remote control or with voice commands.
Mary Jane Frick, Good Shepherd's coordinator of occupational therapy for long-term care, said the apartments were not designed to meet every need, nor did they incorporate the newest or most gee-whiz technologies. Instead, the center tried to find the appropriate level of technology for the greatest range of residents.
The gadgets add up, removing barriers one by one, so "they don't have to rely on someone who won't show up in a snowstorm," said Cindy Lambert, the hospital's corporate director for government and community relations.
Ms. Gammon, the chief executive, says the project has saved money, too. A newly published study done for Good Shepherd by the Center for Outcome Analysis, a nonprofit research organization in Havertown, Pa., found that over the first year, those in the Good Shepherd apartments required 61 percent less public financing to live - about $26,000 per year compared with $67,000 for people who were qualified to move into the apartments but did not.
Rent for the apartments, which range from 540 square feet to 780 square feet, supplemented through federal grants, is less than $500 a month.
Still, the project has been a tough sell for the hospital, which found no federal reimbursement for incorporating the assistance technologies into the apartments. Medicaid, for example, pays for medical care, but the apartments are considered housing and are not eligible for Medicaid reimbursement, despite the medical savings they bring.
Under the current federal rules for reimbursement, "we're going to end up paying more for lower quality of life because we only pay for medical care," said Harry Ting, senior vice president for strategic planning and business development for Good Shepherd.
Allison Pfingstl, 26, has lived in the apartments for a year. She has cerebral palsy and was living with her parents in their home in Allentown until she read about the apartments and applied for a lease. In her house, her parents had to carry her up and down the stairs to go to bed or take a shower.
"This was my dream, to actually get my own apartment," she said. "I wanted to be out on my own, have my own independence, do what I want, when I want," she said.
Her mother does the grocery shopping, and she receives help from attendants during the day, but she no longer requires the round-the-clock care her parents provided. "I figure, you know, my parents aren't going to be around forever," she said. "Start now while they are living, and don't be stuck when they are gone."
At first, she said, her mother was worried about someone who needed so much care going out on her own, she recalled, but "my dad was just like, 'Go for it, girl!' "
Her apartment is one of the most gadget-heavy in the building. A remote-control device on her wheelchair opens the front door, turns the lights and ceiling fan on and off and helps her use the phone. Another remote lets her raise and lower the blinds with the press of a button. "Isn't that cool?" she says. "This is so awesome!"
But not everything, she explains, is entirely awesome. She recalled an accident with the sling that carries her into the bathroom. One day, it continued to lower itself after she was seated on the toilet. The lift bumped her head and left her unsupported on the seat.
"I hate that thing, really," she said. "I get panicky. I'm afraid I'm going to fall."
Other tenants in the building say the technologies make their disabilities easier to live with. Jeff and Marie Butz had increasing trouble living in regular housing; Mrs. Butz's diabetes has left her nearly blind, and both legs have been amputated. Mr. Butz has multiple sclerosis, which can cause spells of intense weakness. He does most of the cooking and laundry.
"I've got to keep him busy," Mrs. Butz said.
Ms. Bowman says that some of the technologies were not thought through completely. For instance, the knob on the washer-dryer is hard to turn. "I use a pliers for that," she said.
But, she says with great pride, these days she can take a shower in just half an hour.
By JOHN SCHWARTZ
