Two years ago, Kara Janes was a resident of Lakewood Continuing Care Center, wheeling herself around the Waterville nursing home with a limp right side and oxygen tubes strung across her face.
Janes was a healthy graduate student at the University of Maine’s School of Social Work. She was living in the Waterville nursing facility for 10 days as part of a project called Learning by Living coordinated by the University of New England’s College of Osteopathic Medicine.
Janes instructed her family not to visit during her 10-day stay. She avoided using her right side, simulating the mobility of someone who had suffered a stroke. She ate pureed food. Nursing home aides woke her each night and helped her onto the toilet. She replicated the experience of someone living in a long-term care facility.
Two years later, Janes, who has completed her master’s degree in social work, is the program manager for At Home Downeast, a growing, volunteer-driven program that connects 60 elderly residents on the Blue Hill Peninsula with the services they need so they can remain in their homes.
“The common theme with people living [at Lakewood], they didn’t want to be there,” said Janes, 46. “They wanted to be in their own home. They were in there because they lacked a support system to keep them in their home.”
At Home Downeast aims to be part of that support system for its 60 members, whose average age is 82, Janes said.
“It takes creating a physical environment and a social environment in order to age in place,” she said.
The program, which started in February 2012, relies on 85 volunteers, many of them retired or approaching retirement age, who give At Home Downeast members rides to medical appointments and to the grocery store and visit members in their homes, sometimes providing them with meals.
Two registered nurses on staff carry out doctors’ orders in members’ homes, making sure they’re taking their medications. Some volunteers, including retired physical therapists, perform safety assessments of elderly residents’ homes and help to make their homes safe for old age.
At Home Downeast also plans social outings for its members, and Janes said she hopes to plan more — outings to Waterfront Concerts in Bangor, for example — as the program grows. Members call each other to check in. Others send fellow members birthday cards.
“We’ve decreased the numbers of elders with depression,” Janes said. “We’re getting them out of the house, so now they’re not as lonely. They’re not as isolated.
“We want elders to be thriving in place, not just surviving.”
Age-friendly communities, attitudes
Nationally, and especially in Maine, the population is aging, and communities will have to adapt. By 2030, more than a quarter of Maine’s population — 26 percent — will be 65 and older, according to state population projections, up from 14 percent in 2001. Nationwide, 20 percent of the population will be 65 and older by 2030, up from 12 percent in 2001.
The changes in a community can be as simple as adding seats in a grocery store so elderly customers can rest while shopping and providing easier-to-manipulate mailbox keys at the post office.
More significantly, Janes said, “We need to have a good transportation system. We have to have a better infrastructure in our communities, and we need to keep elders involved socially.”
Transportation is the No. 1 need for At Home Downeast members, Janes said. It’s an especially complicated challenge in a rural, coastal area like the Blue Hill Peninsula. The nine towns served by At Home Downeast cover 1,300 square miles, and members often need to get to medical appointments in Bangor — a 70-mile round trip from Blue Hill — and Ellsworth — 27 miles round trip.
At Home Downeast belongs to a national network of more than 100 similar programs, called the Village to Village Network, that helps elderly people remain at home rather than move to a nursing home.
“I want them to feel as if they still are a part of the community,” Janes said. “I don’t want them to experience loneliness and depression and fear as to what’s going to happen next. A village such as At Home Downeast really gives members peace of mind.”
Paying to stay at home
At Home Downeast collects fees on a sliding scale from its members. Depending on ability to pay, a couple might pay between $150 and $1,300 per year. The program doesn’t qualify for Medicaid reimbursement, but that means At Home Downeast can be more flexible.
“We don’t have to follow such strict guidelines, and we don’t have to go into the home with a ton of paperwork,” Janes said. “It’s more on the personal level, and that’s what they like, because when they go into the medical offices, they’re not being heard” during the course of a 15- to 30-minute appointment.
There might be some advantages to operating outside the Medicaid system, but any long-term, large-scale solution that allows elderly people to remain at home as they age will likely involve Medicaid.
While Medicaid is intended to provide health care for low-income children and non-elderly adults, the federal program has evolved into the nation’s primary payer for long-term care. Today, the entitlement program pays 43 percent of all long-term care costs, according to a 2011 analysis by Kaiser Commission on Medicaid and the Uninsured. Slightly more than half, 52 percent, of those using long-term care are elderly; most others have disabilities.
In Maine, the state’s Medicaid program paid more than $354 million for long-term care in 2010, up 33 percent (adjusted for inflation) from the amount it paid in 2000, according to the University of Southern Maine’s Muskie School of Public Service.
Two-thirds of the state’s spending on long-term care was spent in nursing homes in 2010. Under Medicaid’s rules, recipients are entitled to nursing home care. Though some states have secured more flexibility, it’s more difficult for states to receive Medicaid reimbursement for long-term care services provided at home.
“They should be entitled to stay in their homes that they have worked so hard for,” said Janes.
While Medicaid funds nursing home care by default, it’s significantly less expensive to pay for services that allow people to remain at home longer, if not indefinitely. In 2010, Maine paid $4,150 per month — $49,800 annually — for each of the 4,700 Medicaid recipients housed at a nursing home.
The state spent $491 monthly — or about $5,900 per year — for each Medicaid recipient who received daytime, nonresidential care outside the home. The cost for comprehensive health and personal care services provided at home was $843 per Medicaid recipient per month. Personal care services — health and homemaking services provided by an at-home aide — cost $558 per month per person.
According to Janes, the system is backwards.
“You hear of people liquidating their assets, getting rid of everything [and entering a nursing home], but that’s ridiculous,” she said. “If they’ve worked so hard for something, they should be able to stay in their home.”
Matthew Stone is BDN opinion page editor.