| projo.com | The Providence Journal

Like many people with an aging mother, Diane Charbonneau had her hands full.

It fell to Diane, 47, to cook, administer her mother's insulin shots, organize the pills in her medicine box -- and drive her from doctor's office to pharmacy, again and again.

Asthma, diabetes, heart disease, osteoporosis - there was a lot to contend with.

But Diane Charbonneau had an added concern: Her 80-year-old mother, Lilianne Charbonneau, would not leave her "kids," Tammy and Ronnie, who are in their 30s and have Down syndrome. Lilianne could no longer manage their seven-room house in Woonsocket.

Diane, an MRI technologist, spent hours on the phone, trying to find a place for her mother and siblings. Told about "the kids," most facilities said no right off the bat. One assisted-living facility came very close to accepting the trio, but decided against it.

"We had to go back to square one," Diane recalled. "But there were no more squares."

Then one day last month, Diane Charbonneau got a phone call from Suzanne Ribero-Balassone. Diane burst into tears. Her prayers had been answered.

Ribero-Balassone is a nurse with the Program of All-Inclusive Care for the Elderly, or PACE, a new agency that helps elderly people continue to live in the community when they are frail enough to qualify for nursing home care.

She was calling to say that Lilianne Charbonneau had been selected as the first client of the PACE Organization of Rhode Island, based in Providence.

PACE takes over all aspects of its clients' care, organizing a team of caregivers -- doctors, nurses, physical therapists, nutritionists and others -- who monitor the clients' conditions and marshal whatever care is needed, as soon as it's needed.

"This isn't to replace a nursing home, or home-care agency," said Joan Kwiatkowski, chief executive officer of the PACE Organization of Rhode Island. "This is to add another option."

After four years in development, PACE opened its doors Dec. 1.

On Dec. 2, Diane Charbonneau noticed that her mother, who suffers from asthma, was wheezing. She placed a phone call to PACE. A nurse came to the house, consulted with a doctor, and prescribed a medication, which was delivered to the house.

Previously, this incident would have taken two days to resolve. Diane would have had to make a doctor's appointment, drive her mother to the office, and then head to the pharmacy. Instead, she made one phone call.

"This is a miracle," she says.

The PACE Organization of Rhode Island is the 35th PACE agency in the country. The concept originated 20 years ago in San Francisco, to help Chinese immigrants whose traditions rejected nursing home care.

Since then PACE centers have been organized in 20 states. (There are six in Massachusetts.) The vast majority of PACE participants are beneficiaries of both Medicare, the federal health plan for the elderly, and Medicaid, the state health plan for the poor. Under a special set of rules that apply only to PACE organizations, Medicare and Medicaid pay a set fee per patient to PACE, and leave the organization with wide latitude in deciding how to spend it. People who qualify only for Medicare can join PACE by paying the Medicaid portion -- $3,010 a month.

PACE pools the money and, free of many rules, spends it to keep the client living in the community. PACE will buy an air conditioner for a patient with lung disease, something not normally covered by health plans. PACE will pay for a few days in a nursing home when needed, and then bring the patient home. While Medicare and Medicaid won't pay for physical therapy unless the patient is improving, PACE will provide it merely to slow a person's decline.

And PACE will find a way for an aging mother to stay with her impaired children.

Recently, Lilianne and Diane Charbonneau came to PACE for an intake visit. With grant money and bank loans, the agency has built a 12,000-square-foot center off Eddy Street with a cafeteria, doctors' offices, a physical therapy room, lounges and an adult daycare center. There are also showers and even a hairdresser's sink.

Tammy, 34, and Ronnie, 33, came along, because they go everywhere with their mother. The family had lunch, and Tammy and Ronnie played cards with the staff, while Lilianne and Diane met with Jennifer Jaswell, director of marketing, to finalize their enrollment.

"You do need to receive all your services from PACE," Jaswell said. PACE clients give up their own physicians and receive care only from those associated with PACE. But if they have a specialist they favor, PACE will try to bring that person into its network, Jaswell said.

Diane translated this into French -- her mother grew up in Canada -- and Lilianne nodded.

With Diane translating, Jaswell said that in an emergency, the family should call 911, but let PACE know as soon as possible afterward.

"Say she has a bad cold," Diane asked, "can I set up an appointment with Dr. Teno?" Jaswell replied that she should first call Ribero-Balassone, the nurse who is the case manager for Lilianne.

Lilianne had adored her French-speaking doctor, but agreed to switch to Dr. Joan Teno, the PACE medical director. Diane noticed that throughout the first visit with Teno, the doctor always touched the patient, always maintained contact with a gentle hand. Afterward, Lilianne told her daughter, "I felt good with my doctor."

And Teno feels good with PACE. Teno is also associate medical director of Home & Hospice Care of Rhode Island and a Brown University researcher who studies end-of-life care and the quality of care for seriously ill people. She had heard of PACE programs in other states and was always a fan of the concept.

"It's always been my biggest frustration with how our health-care system works -- how fragmented it is," Teno said. "There are very few places where I can work with a multidisciplinary team. One is hospice, the other is PACE. That's fun. That's the type of medicine I like to practice."

Research on the first 10 years of PACE programs found that clients spent less time in hospitals and nursing homes and used specialists less often than other people on Medicare. They used fewer drugs than nursing home residents and had a lower death rate. Their care cost less, too.

But PACE tends to occupy a small niche. Only three PACE entities have more than 1,000 clients; the typical size is 200 or 300 people. The PACE Organization of Rhode Island expects to eventually enroll 180 people, and then open centers in northern and southern Rhode Island. (Charbonneau was the sole enrollee on Dec. 1, and about 10 more people are expected to sign up on Jan. 1.)

"I do think there is something in PACE that requires it to be small in scale," said Robert Greenwood, spokesman for the National PACE Association. There are only so many patients a multidisciplinary team can handle. Once the patient base grows, it requires setting up a new team, never an easy process.

Indeed, building a PACE organization is always arduous, typically requiring a series of grants for planning, construction and equipment purchase; and endless paperwork to win government approvals on several levels. The PACE Organization of Rhode Island, instigated by a group of long-term-care providers, took four years to come to fruition.

Kwiatkowski, the chief executive officer of the Rhode Island PACE, says the program doesn't work for everyone. To be eligible, a client has to need help with at least two activities of daily living. She has to be willing to transfer to a new set of caregivers, and have all her care coordinated from a central location. And the whole family has to agree with the program's mission.

But Kwiatkowski hopes that the mere presence of PACE in Rhode Island will influence the rest of the health-care system: "I hope we will serve as an important catalyst for people to think about a more client-centered approach as well as a more flexible approach."

On a recent afternoon, Pauline Bourassa, an occupational therapist employed by PACE, went to Lilianne Charbonneau's home in Woonsocket. As Tammy and Ronnie watched, Bourassa demonstrated a new way to put on socks. She stretched a sock over a curved piece of plastic, like a tube cut in half, with rope handles. Then Lilianne, who cannot bend down, sat in a chair, grasped the handles, pulled the plastic device over her leg, and -- voila! -- the sock was on her foot.

"Good work!" Tammy exclaimed, patting Bourassa on the back.

Tammy had been putting on Lilianne's socks and shoes each morning. But Tammy and Ronnie can expect to be busier with other things in the future. The two came to Lilianne when they were infants, among the dozens of foster children she cared for over the years. But unlike the others, Tammy and Ronnie never left, and when they were teenagers Lilianne adopted them.

Extremely protective of them, she kept them out of state programs for the developmentally delayed after they finished school. Now, they have been enrolled in state services, and the pair will soon be learning more independence and getting jobs.

When Bourassa left, Lilianne grasped her walker and made her way into the dining room to talk. Lilianne has lived in two countries, lost two husbands, bore six children, and buried three. Her health started to decline last year when a son and her second husband died within three months. She's fallen several times, and her bones are fragile.

"Seven rooms are too big for me now," she said of her house.

In February, Lilianne, Tammy and Ronnie will move into the bottom floor of her son Roger's house in Burrillville. It's being renovated to accommodate them.

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