Adult family care: Our goal is to keep them independent

One day last summer, Edna Noonan saw a newspaper ad placed by a couple in Lee, her own small hometown outside Lincoln. Ken and Linda Currier were looking for employees to help them provide live-in senior care in their Ridge Road home.

The ad was a flash of hope for Noonan, who was then driving 120 miles round-trip to Bangor to visit her 80-year-old aunt and escort her to doctor’s appointments. She fired off a letter asking the Curriers who was eligible for the new adult family care program.

Licensed last August, the adult family care home in Lee was one of four pilot sites in a statewide initiative to create nursing home alternatives. Now, a little more than a year after state officials introduced adult family care, there are seven homes open and five proposals pending.

The fledgling program still faces problems. A lack of public awareness has been one obstacle. At the same time, the handful of established homes have already proved a blessing to families like Edna Noonan’s.

For months, Noonan battled feelings of guilt when she thought about placing her Aunt Berniece in a nursing home. The spirited 80-year-old woman had lived in the same house in Bangor for 45 years. But the early stages of Alzheimer’s disease brought on behavior that seemed increasingly dangerous.

Aunt Berniece sometimes forgot to eat and was afraid to go to sleep, because she was convinced there were people in her cellar. She phoned her niece late at night, in tears, when she thought she heard voices. She called the police often and slept with a chair wedged under her bedroom doorknob.

Once a week — or more often, if her aunt’s worried neighbors called her — Noonan drove an hour to Bangor. She arranged for people to sit with her aunt, but when they arrived Berniece refused their help.

When she found a knife hidden under her aunt’s pillow, Noonan was scared enough to take action.

Berniece agreed a year ago to move to Bangor’s Westgate Manor nursing home, where she received excellent care, her niece said. Noonan continued her long interstate commute until she learned of the new option in her own back yard.

With a maximum five beds per site and a maximum two homes per operator, adult family care wasn’t meant to be another chain-type, institutional option. Brought to Maine from Oregon by Department of Human Services Commissioner Kevin Concannon, its goal is smaller, more personalized, homelike settings, run by families rather than career businesspeople.

The proposal sounded ideal, but the demanding business reality of opening senior care homes has scared off some prospective family operators.

Still, state and local proponents say the project is working, even if homes are multiplying more slowly than expected.

“It just made it so hard,” Noonan said of the distance that once divided her aunt and herself. “I lived on a guilt trip for so long, and it means a lot to me knowing we’re both in the same town.”

Trailblazers

Adult family care began in Maine with homes in Brewer, Cherryfield, Lee and Bangor. One was opened by a nurse, another by a former nursing home employee, a third by another veteran of long-term care for the elderly.

Only the Curriers, of Lee, came to the table without a health care background. Ken’s experience was in electrical work and construction; Linda maintains a career with the state Department of Labor.

But after Ken’s mother was diagnosed with Alzheimer’s two years ago, her declining health changed the couple’s entire life structure. Florence needed 24-hour supervision but didn’t initially qualify for a nursing home. She lived at a boarding home for a year, but her care became too big a challenge for the owners.

So she returned last year to sleep in her son’s living room in Orono. Her illness would soon lead the Curriers to buy a large new home, hire a staff and quickly learn the business of adult family care.

They installed a $9,000 sprinkler system and call buzzers, built a wheelchair ramp to the house and, perhaps most importantly, ensured that the environment would reflect the program philosophy.

“When their families come in, they’re like part of our family. It’s just as much the residents’ home as it ours,” said Linda. “Our goal is to keep them independent and let them make their own choices. They don’t have to eat breakfast when everyone else does or go to sleep at a certain time.”

Edna Noonan is able to visit her aunt several times weekly, take her to church every Sunday and bring her home to dinner often. There, Aunt Berniece plays with her cat, Prince, who now lives with her niece.

At Care Ridge Estates, residents bring their own furniture and decorate their own rooms. When they feel well, they help out in the kitchen, washing dishes or making cookies.

Those details make all the difference, Noonan said. Her aunt calls Care Ridge her home, its owners and staff her “extended family.”

Noonan and her husband spent 10 days in Nova Scotia last summer, for the first time in years, secure in the knowledge that Aunt Bea was content.

Aunt Berniece is also pleased by the beauty of the Curriers’ home, with its high ceilings, bright sunlight and hardwood floors.

“She’s very prideful,” Noonan explained. “Knowing everything is so brand-new — it gives her something to boast about.”

Awareness gap

Today, all five beds at Care Ridge Estates are filled. Last month was the first time the home has run at full capacity. While the Curriers feel they have met their part of the bargain, they say the state’s Bureau of Elder and Adult Services could do more to spread the word about the new care option.

“We weren’t told we were going to have to go out and put ads in the newspaper,” Linda said. “We were told they had hundreds of people in need of beds.”

When Medicaid guidelines were changed in 1994, many nursing home residents with mental rather than physical ills no longer qualified for high-level coverage. Adult family care, a less intensive, less costly alternative, was designed to fill the gaps for those left with no place to go.

Then Medicaid guidelines were changed again last year, to cover more people with Alzheimer’s and similar disorders.

“A year or so ago we were facing an enormous problem with people in nursing homes and no place to go,” explained Bureau Director Chris Gianopoulos. “People went in thinking there would be an endless supply. Since then, that tremendous pressure has eased somewhat.”

The people and places that would supply adult family care homes with residents — hospitals, nursing homes, social workers and nurses — “tend to be comfortable with the models and settings they’re familiar with,” she said. They are just beginning to grasp the new model.

Some nursing homes plan to open their own “independent living” complexes. They don’t want to send away patients who could be customers.

“There’s a lot of feeling in nursing homes that they want to continue to serve these people. Letting go is difficult,” said Cathy Cobb, the Bureau’s director of community resource development.

Eddie Dugay said he realized early on that his wife’s adult family care home, Campbell’s Hill Adult Foster Care in Cherryfield, was losing potential residents because local social workers didn’t know it existed.

He visited doctors and hospitals to tell them about the program, and invited state assessors to Cherryfield for on-site education. “These people get a stack of mail every day,” he said. “A letter coming in from the Department of Human Services isn’t going to cut it.”

Senior Spectrum, the Central Maine Agency on Aging, was hired by the state last year to assess the medical eligibilty of elderly residents for different kinds of care. Nurse-assessors are also expected to educate consumers about available options.

Barbara Viti, R.N. trainer for Senior Spectrum, said she is working now to supply assessors statewide with more detailed information about adult family care. Public awareness is limited by the small number of homes, she said.

Dugay found some of those in charge of referrals didn’t know the new homes could take Medicaid patients. Others were unaware they offered round-the-clock care.

He doesn’t believe the state let him down, however. Dugay concurs with Cobb’s expectation that it’s the “operator’s responsibility to keep the beds filled.”

“A year from now, it will be easier,” he said. “The state has provided us with a vehicle, and I think we’re right in the driver’s seat.”

Room to grow

More adult family care homes are still needed, Gianopoulos said. Original plans called for the development of 20 sites by the end of 1996; there were seven. The bureau director said the state probably won’t have more than 15 homes by the end of this year.

She would particularly like to see the program grow in southern Maine, where real estate costs are a barrier.

Existing homes have the bureau’s full confidence, she said. Family members attend six days of training at the Department of Human Services training institute, followed by three more days studying oral medications.

“Clearly we’d be happy if we had twice as many [homes], but I’d rather have seven and know that they’re good,” Gianopoulos said.

A spokeswoman for the Maine Health Care Association said “the jury is still out” on adult family care. An alliance of nursing homes, boarding homes and home health agencies, the group raised concerns about the qualifications of family caregivers at the program’s inception a year ago.

“There just isn’t enough of a track record yet to know,” said Paula Valente. “We haven’t seen problems, but I think the concerns are still there.”

Renovations are often required to convert private homes to senior care operations, and banks issuing building loans look at the homes as small businesses. Caregivers without a business background can be overwhelmed by the process, Gianopoulos said. The state offers families support and guidance.

Homes begun with state funding through the Maine State Housing Authority are required to serve at least one or two Medicaid patients. The lower out-of-pocket cost of adult family care — about $70 daily, compared to $150 or more for a nursing home — also appeals to people paying their own way.

Program administrators in Maine said two-thirds of adult family care residents in Oregon are covering the cost with their own savings.

“Their resources last a lot longer at those rates,” said Gianopoulos.

In Maine, the Dugays have applied to open a second home in Milbridge. The Curriers considered submitting a second proposal, but decided to wait until their first project is on firmer financial footing.

Their fourth resident moved from a nursing home to Care Ridge Estates last month. The 89-year-old, wheelchair-bound man has his own room on the ground level, with a window facing the rolling, snow-covered hill that leads to the house.

Linda Currier said he was thrilled at the prospect of a quieter, more private life.

“He wanted to be able to read the newspaper, look out at birds and sleep in his own bed. He wasn’t asking a lot.”