Cover Story: Home Adapted Home

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July 2005

By Sarah Schmelling

SuppIL resident Judy Bowman uses an adapted stove to prepare a meal. Bowman was on the committee that recommended the various adaptive fixtures used in the apartments in the building.

It is true that Good Shepherd Rehabilitation Hospital owns and operates the new, forest-green and tan building across the street from its Allentown, Pa, campus. Some of the people with disabilities living there have even spent time in Good Shepherd’s long-term care facility. But Mary Jane Frick, OTR/L, ATP, Occupational Therapy Program coordinator of long-term care for Good Shepherd, wants to make one thing clear: the people who live in the Supported Independent Living (SuppIL) building are not “residents.” “There’s a difference,” she says. “Residents live in our nursing home. Tenants rent the SuppIL apartments.”

This is no arbitrary clarification. The SuppIL building is one of just a handful like it across the country, created with the core idea of allowing low-income people with physical disabilities to live as independently as possible. And the program’s planners have learned that true independence requires many elements never before incorporated into rehabilitation housing.

For Good Shepherd, it was no small task. In the planning stage for 5 years, and requiring funding tallying in the millions, the 18-unit, two-floor building opened on June 24, 2003, and now serves as a prime example of how assistive technology can help people with disabilities live independently at a lower cost of care.

“It’s another option,” says Cindy Lambert, Good Shepherd corporate director for government and community relations. “It is an alternative for people with disabilities to live outside of a nursing home.”

The process of creating the building was a learning experience for everyone involved, from Good Shepherd’s executives and rehab staff, to the architects and management team, to the tenants who call the SuppIL apartments home. Lambert, Frick, and others now hope they can share this knowledge to help create a new view of long-term care.

AN INDEPENDENT VISION
Lambert says the idea for the project originated from Good Shepherd’s longtime mission to “provide opportunities and resources for people with disabilities to reach their maximum wellness and independence.”

She explains that the hospital, founded by a Lutheran pastor in 1908, for years discussed the idea of providing “affordable, accessible living arrangements” for people with disabilities “who really didn’t need to be in a nursing home, but had no other means to live in the community.”

When Sally Gammon became president and chief executive officer of Good Shepherd in 1997, she put the project in motion and asked Lambert to head its planning.

Lambert had heard about Accessible Space Inc, a nonprofit organization in St Paul that creates accessible housing with grants from the US Department of Housing and Urban Development (HUD). She talked with the company and began to research similar facilities that gave her the idea “that if people needed affordable, accessible housing stock, the way to maximize what little resources there were…would be to capitalize on our abilities with our own therapists here to use technology, both low-tech and high-tech devices, because we have an affinity for that.”

The idea would be to design apartments where people with disabilities, Lambert says, “can self-direct others in the activities of daily living or with personal care, but to a lesser extent—less in the number of hours of help they need from another human being—by applying and using technology in the building.”

With approval from Good Shepherd’s board of directors, the hospital contracted with Accessible Space to apply for HUD funding, and received a grant of close to $1.5 million. They also received a $4 million Project Rental Assistance Contract to offset the difference between what tenants would pay for rent and fair market value.

While this funding was helpful, it paid for the “bricks and mortar” of the building, but not all of the technological specifications the apartments required. Because Good Shepherd wanted to demonstrate its “hypothesis” that a facility like this could save the government money through the use of technology, Lambert says the board had to “swallow pretty hard and say if we want to do the project right, we’re going to have to put our own resources into it.” The hospital allocated $2.1 million for the project.

These funds, along with grants from local banks, allowed SuppIL to get off the ground. Now they had to figure out just what these apartments would require.

Cindy Lambert

SPACE EXPLORATION
The project committee included not only Good Shepherd executives, but rehab staff and people with disabilities. Frick, who has spent many years working with assistive technology in long-term care, was the representative occupational therapist. “A great deal of planning was involved,” she says. “We really wanted it to be the best experience possible, so we needed to…provide them with the right level of technology—not too high, not too low—but really just the right level to meet their needs.”

Frick says this was difficult because they were not targeting one specific population, but people with a variety of diagnoses. At the same time, the apartments would not work for everyone with a physical disability, she explains. “We decided it would be a population who could make their own decisions and yet did have some definite physical limitations.”

For their part, potential tenants had requirements that extended beyond adaptive equipment needs. The key condition potential tenants demanded was that if Good Shepherd was their landlord, they did not want the hospital to provide other services to them. “They were very clear that they did not want the person who owned the building to also be the provider of service,” Lambert says, explaining the reason for this was they did not want to be in a situation where, if they were unhappy with their service provider, they could be evicted from the building.

For the tenants, it was a question of independence. “The tenants all said they really wanted to do things on their own,” Frick says. “So they hire their own attendant care and go to outside agencies. If they need tech support, usually we’ll handle it through our day hospital. So they would call, just as anybody else would call, and make an appointment for an evaluation.”

All of the committee’s research led to universally designed apartments filled with assistive technology that may not be the newest, but is most appropriate.

One example is a laundry unit that allows tenants or their personal attendants to wash and dry clothes in one machine. This means less lifting for tenants, while also maximizing their time with attendants, who no longer have to run back and forth from a laundry room. Other helpful technology includes an oven with a side-opening door, which prevents tenants from having to reach all the way into it. Devices like this, Frick says, took a lot of research, “but I think they turned out really well.”

Perhaps the most popular of the devices is the self-propelled lift system. The tenant uses buttons to get into a customized sling that carries them via a ceiling track from the bedroom to the bathroom, where they can be lowered into the shower or onto the commode. The bathrooms also have multiple grab bars, push-button faucets, and automatic-flush toilets.

Nine of the apartments feature a voice- or switch-operated control system that, according to Frick, “allows the person in the apartment to fully control their environment.” Tenants use the system to open and close shades and doors, control the temperature, and turn on the lights, television, or computer. “They customize it to what they want to do,” she adds. “We have some people who just control the TV and lights, and then there are some people who do everything.”

The height and size of every room, shelf, and drawer had to be researched and agreed upon. Then there were features that cannot be seen, from the electrical wiring, to the blocking behind the plaster in walls used to support grab bars. All of these details had to be explained to the architectural and construction teams, Frick says, but they chose good companies whose staff consulted with therapists when making decisions.

Bowman uses a lift to assist her in using the bathroom facilities in her apartment. Because of adaptive equipment like this, she is able to live independently, with only minimal assistance from caregivers.

THE RESULTS
Now that the SuppIL building is celebrating its 2-year anniversary, Good Shepherd can truly say it is a success. There has been little turnaround—the apartments originally filled up in less than 2 months—and only a few people have gone back to living in nursing home environments.

“We’re seeing people with all kinds of physical disabilities who, as long as they have the motivation and the willingness to self-direct…make all the decisions [regarding] their lifestyle like any of the rest of us,” Gammon says. She uses an example of one man with cerebral palsy who was unhappy in the nursing home. Now, in SuppIL, she says, “every time I see him he’s smiling. He has control of his life; it’s a totally different situation.”

“There’s such an array of people who live there,” adds Frick. “There are people who are single or married; one woman lives with her small son and her mom lives down the hall. And they’re all very motivated and exciting to work with.”

The apartments have grabbed public attention, locally, nationally, and beyond. “I think people in our community are amazed,” Gammon says. “People want to go on a tour and meet the tenants and talk with them about their experiences.”

Good Shepherd has even been able to quantify its success. Using a grant from the Pennsylvania Department of Health, the hospital conducted a longitudinal study to prove the project’s potential cost savings. The results were staggering, showing that the savings to the government of a person living in an apartment like SuppIL’s instead of a nursing home are between $40,000 and $60,000 per person, per year.

Tom Burd

MOVING FORWARD
For Frick, one of the biggest challenges of the SuppIL project is just being the “landlord.” It is hard “not running over there and encouraging the residents to figure out the right avenues to pursue” when they have problems, she says.

But the bigger picture issue Good Shepherd faces is having funding cut to programs like this, something the federal government has said it might do. That is why Lambert says they are doing everything possible to get the message out. “This was a prototype to demonstrate to people what can be done,” she says. “We’d like others to get on the bandwagon.”

The investment has been a worthwhile one for Good Shepherd, but there are still questions that need answering. “[We’re] glad we made the investment,” Gammon says. “But the question is how do we expand this level of living for others?”

For a start, Good Shepherd is building an outpatient clinic that will include a center for rehabilitation technology to demonstrate “cutting edge” devices, Lambert says.

Tom Burd, vice president of residential care, says the hospital is discussing a community reentry program, where people in nursing homes receive training and support to live on their own.

And, according to Gammon, the hospital is researching the possibility of creating a SuppIL-like building for people with greater financial resources.

All of this, they hope, will result in more alternatives to long-term care. People are “going to have to start looking at community-based programs, simply because the cost involved in an inpatient setting is becoming so prohibitive that the state and federal government cannot afford to sustain everybody in a nursing home environment,” Burd says.

“There is a huge need for this type of apartment,” says Frick, adding she thinks the government will see over time “that you’re going to initially have to put in some money to make apartments like this, but in the long run, people will be able to live a great deal longer independently. And the savings—not only in money, but in quality of life—you just can’t put a price on that. So I do hope this is just the beginning.”

A Dream Come True

Allison Pfingstl

For Allison Pfingstl, 26, having her own apartment is a dream come true. “When I lived at home, my mom would have to do everything for me,” says the Good Shepherd Supported Independent Living (SuppIL) apartment resident, who has cerebral palsy. “I can feed myself and all that, but I can’t dress myself or bathe myself.” Among other things, her mother had to carry Allison up a flight of stairs every night.

Now, Allison says, she has attendant caregivers she hires herself. She can press a button to turn on the lights and the television or even answer the phone, and she uses a variety of other assistive technology devices in her apartment to do more on her own than she ever has before. “I really love it,” she says.

Judy Bowman, who is in her fifties and has Charcot-Marie-Tooth disease, not only lives in a SuppIL apartment, but served on the planning committee. “At first [living here] was a challenge, but now I don’t know if I could ever go back to living in the place I was in before,” says Bowman, who used to rent an apartment in a private house.

She likes to tell the story of how, about a year ago, she took a shower on her own for the first time in close to 30 years. A pitcher of iced tea had spilled on her clothing, and she had the choice of waiting hours for her attendant, or trying to take a shower herself. She used the apartment’s lift system, which carried her from her bedroom to the bathroom and lowered her onto the shower bench. “It took me 3 or 4 hours,” she says, laughing. “Now I’ve got it down to half an hour.”

Bowman gave suggestions for many of the assistive devices selected for the apartments, including the side doors for the ovens and the push buttons on the front of the sinks to turn water on and off. She says she was also very interested in the all-in-one washer/dryer that Good Shepherd chose. “Now all we need is a machine that can wash, dry, fold, and then put away the clothes,” she jokes.

She says her children, who are adults, did not really like the apartment at first, “but now they see I’m happy.” And while there have been some problems, such as furniture moving when she uses it for support, she says Good Shepherd is always willing to listen to her concerns.

Overall, Bowman believes there should be more apartments like this, because they “give you a feeling you’re worth something.” She says she knows that a lot of people with disabilities feel “they can accomplish nothing, but that’s not true.” She describes a time early on in the apartments, when a person not in a wheelchair suggested they “take a walk,” then quickly apologized.

“I said, ‘No, say that, because that’s what people in wheelchairs do.’ If I’m with someone who’s ambulatory, then I am ‘going for a walk,’” she says. “I just get there faster.”

—SS

Sarah Schmelling is a contributing writer for Rehab Management.

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July 2005