BELFAST – Mentally disabled adults live among us in a variety of settings. Some are fortunate to have stayed for many years in the comfort and familiarity of their family homes, being cared for as they age by their parents or other caregivers.

Others live in supervised group settings, ranging from nursing homes to private apartments, depending on the extent of their disability.

But for a number of special-needs Mainers, a relatively new option is gaining popularity. “Shared living” connects mentally disabled individuals with private families in a long-term living arrangement that promotes their independence and self-worth.

Mentally disabled people and their families like shared living because it’s humane and individualized. Host families like it because they get trained and paid to work with a rewarding population of unique personalities. And the state – which pays for most of the cases – likes it because it saves money.

Wayne’s world

Back in the late 1980s when Alan Wood was working at the Augusta Mental Health Institute, he became aware of a disturbing pattern affecting long-term patients.

“People would be discharged from the hospital, where they had everything done for them, to an apartment or other living arrangement where they had to do just about everything for themselves,” Wood said last week. It seemed like a recipe for failure, and many patients would decline rapidly and show up on the wards again within a matter of weeks or months, he said.

There was one patient in particular, Wood noticed, who passed through AMHI’s revolving doors more than once. His name was Wayne. A soft-spoken guy in his late 30s, he had lived in AMHI’s dreary residential units pretty much nonstop since he was 22.

No one ever came to visit him. In addition to his diagnosis of schizophrenia, he was mildly mentally retarded. Before coming to the Augusta facility, he had lived at the Pineland Center in New Gloucester, infamous for its warehousing of vulnerable disabled patients.

Wood said he and Wayne developed a friendly camaraderie, and after Wood left his job at AMHI, he often thought about the gentle, lonely man.

Then, in 1994, AMHI clinicians contacted Wood and his wife, Julie, with a proposal. Wayne was once again up for discharge, but this time the goal was to find him a stable, long-term home with a family. Would Alan and Julie be interested? The couple didn’t need much time to think about it before they agreed.

Thirteen years later, at age 53, Wayne is a productive, self-confident member of the Wood household, as well as a man-about-town in Belfast. He has his own upstairs apartment, comes and goes on his own schedule, and has developed a network of friends with whom he goes to movies and gets pizza. He has a special girlfriend, two jobs and a bantering familiarity with a number of downtown merchants and local residents.

The Woods keep an eye on him. They notice if he hasn’t showered. They watch his diet and remind him to take the medicines that keep his schizophrenia at bay. They include him in most of their social activities, including visits with their grandchildren, evening television viewing and annual vacations, just as if he were – well, family.

During an interview last week at the comfortable in-town home he shares with the Woods, Wayne admitted he was tired after working a late shift the night before, washing dishes at a popular local restaurant. He seemed drowsy and distracted and didn’t have much to say – until Julie Wood reminded him about his recent excursion to the neighborhood movie house.

What did you see? she asked gently, challenging him to remember.

“‘Pirates of the Caribbean,'” he answered promptly, sitting up straighter with an enthusiastic smile spreading across his face. “It’s a good movie. Captain Jack Sparrow!”

Shared living

Wayne is one of about 200 adults in Maine with mental retardation or autism who reside with unrelated families in a long-term relationship known as “shared living.” The great majority of these individuals are enrolled in MaineCare, the state’s Medicaid program.

MaineCare pays host families like Alan and Julie Wood about $30,000 to $35,000 a year to open their hearts and homes to these individuals, and to assume the varied responsibilities and challenges that come with their care. The program pays another $15,000 a year or so per client to the private agencies that identify and train appropriate families, match them up with residents, troubleshoot any problems and provide respite services as needed.

According to Sandi Macomber, director of community-based services for LifeShare, a New Hampshire-based for-profit company that is expanding into Maine, the demand for shared living is on the upswing throughout the state. LifeShare, one of several shared-living agencies in Maine, has had an office in Portland for about a year and expects to open offices soon in Bangor and Augusta.

There are numerous people with a wide range of mental and physical disabilities who have lived most of their lives with their parents, Macomber said. Many of these individuals are now in their 40s and 50s, and their aging parents may be reaching the end of their ability to care for them adequately. Shared living offers families the opportunity to place their loved one in a caring private home with the degree of individual attention they’re used to receiving, she said.

For clients like Wayne, who are socially high-functioning but who don’t do well living entirely on their own, shared living offers many advantages over institutional or group home settings, Macomber said. To the best of their ability, they are encouraged to work in the community, manage their own finances, shop for and prepare food, and develop social connections.

But even people with more profound challenges than Wayne’s – including severe physical disabilities such as those that may accompany cerebral palsy and other neurological disorders – shared living offers an attractive alternative to institutional care.

And it’s not only the clients who thrive in these settings, Macomber said. In most cases, the families who agree to share their lives with a disabled adult find great personal satisfaction and reward in the relationship.

“The problem is, we don’t have enough homes,” Macomber said. “We’re trying to recruit more families.” Host families must undergo a thorough background screening, home inspection and training, she said, and should expect LifeShare staff to check in regularly.

Fostering independence

The Maine Department of Health and Human Services uses state and federal tax dollars to pay for several forms of residential care for about 2,700 people with mental retardation and autism, according to Bill Hughes, program manager for developmental services at DHHS.

Options include nursing homes with round-the-clock professional nursing staff, group homes with 24-hour supervision, multiple-occupancy apartments with just a few hours of support a week, shared-living arrangements, and single-occupancy apartments for those who can manage on their own with a minimum of supervision. The goal, Hughes said, is to match each individual with the least restrictive living situation without compromising safety or health.

While group homes still fill an important need, Hughes said, they no longer are considered the best choice for relatively healthy individuals with milder degrees of mental retardation. For a growing number, he said, shared living is the new ideal.

“In the best cases, the individual owns his own home and a family joins them,” he said. That way the client remains in a familiar setting and retains the most control. But other scenarios, such as Wayne’s 13-years-and-counting relationship with Alan and Julie Wood, also can work out well, he said.

Shared living also makes financial sense, costing the state about $50,000 to $55,000 a year per person versus the $85,000 per person average for the residential services program as a whole, which includes high-cost nursing homes and other pricey placements, Hughes said.

“Clearly, there are some savings, but that’s not our reason for doing it,” he said.

For Wayne, the benefits of shared living are self-evident.

Back when the state was trying to establish him in group homes or other institutional settings, he would spend long hours in his room, avoiding personal contact and neglecting his diet and hygiene, according to Alan Wood.

“Without support, he just had a difficult time following through,” he said.

Now, with the Woods’ caring presence and the Belfast community’s generally warm acceptance of disabled individuals, Wayne’s self-confidence and outgoing nature have had a chance to bloom.

“Our goal is to see that he develops the greatest independence he can possibly have,” Alan Wood said. “We’re really just a safety net.”

“And he’s a great guy,” Julie Wood added. “We feel very fortunate that Wayne lives with us.”